Research Anthology on Improving Health Literacy Through Patient Communication and Mass Media 2021033755, 2021033756, 9781668424148, 1668424142

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Research Anthology on Improving Health Literacy Through Patient Communication and Mass Media

Copyright © 2021. IGI Global. All rights reserved.

Information Resources Management Association USA

Research Anthology on Improving Health Literacy Through Patient Communication and Mass Media, edited by Association, Information Resources Management, IGI Global, 2021. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/nyulibrary-ebooks/detail.action?docID=6686709. Created from nyulibrary-ebooks on 2021-09-02 06:30:41.

Published in the United States of America by IGI Global Medical Information Science Reference (an imprint of IGI Global) 701 E. Chocolate Avenue Hershey PA, USA 17033 Tel: 717-533-8845 Fax: 717-533-8661 E-mail: [email protected] Web site: http://www.igi-global.com Copyright © 2022 by IGI Global. All rights reserved. No part of this publication may be reproduced, stored or distributed in any form or by any means, electronic or mechanical, including photocopying, without written permission from the publisher. Product or company names used in this set are for identification purposes only. Inclusion of the names of the products or companies does not indicate a claim of ownership by IGI Global of the trademark or registered trademark. Library of Congress Cataloging-in-Publication Data Names: Information Resources Management Association, editor. Title: Research anthology on improving health literacy through patient communication and mass media / Information Resources Management Association, editor. Description: Hershey, PA : Medical Information Science Reference, [2022] | Includes bibliographical references and index. | Summary: “This book provides an overview of the importance of health literacy and the various means to achieve health literacy for patients using several strategies and elements such as patient communication and mass media and covers health awareness challenges that have been faced recently and historically and pushes for better patient-provider communication”-Provided by publisher. Identifiers: LCCN 2021033755 (print) | LCCN 2021033756 (ebook) | ISBN 9781668424148 (hardcover) | ISBN 9781668424155 (ebook) Subjects: MESH: Health Literacy | Health Communication | Information Dissemination | Communications Media Classification: LCC R118 (print) | LCC R118 (ebook) | NLM WA 590 | DDC 610.1/4--dc23 LC record available at https://lccn.loc.gov/2021033755 LC ebook record available at https://lccn.loc.gov/2021033756 British Cataloguing in Publication Data A Cataloguing in Publication record for this book is available from the British Library. The views expressed in this book are those of the authors, but not necessarily of the publisher.

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For electronic access to this publication, please contact: [email protected].

Research Anthology on Improving Health Literacy Through Patient Communication and Mass Media, edited by Association, Information Resources Management, IGI Global, 2021. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/nyulibrary-ebooks/detail.action?docID=6686709. Created from nyulibrary-ebooks on 2021-09-02 06:30:41.

Editor-in-Chief Mehdi Khosrow-Pour, DBA Information Resources Management Association, USA

Associate Editors Steve Clarke, University of Hull, UK Murray E. Jennex, San Diego State University, USA Ari-Veikko Anttiroiko, University of Tampere, Finland

Editorial Advisory Board

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Sherif Kamel, American University in Cairo, Egypt In Lee, Western Illinois University, USA Jerzy Kisielnicki, Warsaw University, Poland Amar Gupta, Arizona University, USA Craig van Slyke, University of Central Florida, USA John Wang, Montclair State University, USA Vishanth Weerakkody, Brunel University, UK

Research Anthology on Improving Health Literacy Through Patient Communication and Mass Media, edited by Association, Information Resources Management, IGI Global, 2021. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/nyulibrary-ebooks/detail.action?docID=6686709. Created from nyulibrary-ebooks on 2021-09-02 06:30:41.



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List of Contributors

Achakpa-Ikyo, Patience Ngunan / Benue State University, Nigeria................................................. 453 Adesina, Evaristus / Covenant University, Nigeria............................................................................. 15 Adeyeye, Babatunde / Covenant University, Nigeria.......................................................................... 15 Adikpo, Janet Aver / Eastern Mediterranean University, Cyprus..................................................... 453 Alvarez, Lizette / University of Southern California (USC), USA.................................................... 498 Babaleye, Taye Babaleye / Lead City University, Nigeria................................................................. 469 Bek, Mine Gencel / University of Siegen, Germany........................................................................... 418 Bellini, Maria Irene / Imperial College London, UK......................................................................... 203 Ben-Enukora, Charity / Covenant University, Nigeria...................................................................... 15 Bhati, Sakshi / Pittsburg State University, USA................................................................................ 143 Blight, Michael G / North Central College, USA............................................................................... 436 Browning, Ella R. / University of Pennsylvania, Philadelphia, USA................................................. 558 Chen, Mei / Seenso Institute for Public Health, Canada....................................................................... 1 Çobaner, Aslıhan Ardıç / Mersin University, Turkey........................................................................ 418 Costa, Liliana Vale / University of Aveiro, Portugal & DigiMedia, Portugal.................................... 108 Croda, Enrica / Ca’ Foscari University of Venice, Italy................................................................... 588 Daoud, Ines Mezghani / Carthage University, Tunisia...................................................................... 481 Edoh, Thierry O. C. / Technical University of Munich, Germany..................................................... 370 Eken, ihsan / Istanbul Medipol University, Turkey............................................................................ 612 Gefen, David / Drexel University, USA.............................................................................................. 505 Gezmen, Basak / Istanbul Medipol University, Turkey..................................................................... 612 Gomes, Lisa Alves / University of Minho, Portugal........................................................................... 274 Grant, Yasmin / Imperial College Healthcare NHS Trust, UK........................................................... 70 Idowu, Dela / Gift of Living Donation, UK......................................................................................... 89 Jha, Ajeya K / Sikkim Manipal University, Gangtok, India............................................................... 330 Jiang, Ran / Soochow University, China........................................................................................... 143 Jupka, Keri / National Center for Parents as Teachers, Saint Louis, USA....................................... 289 Karamanidou, Christina / Institute of Applied Biosciences, CERTH, Thessaloniki, Greece.......... 238 King, Gillian / University of London, UK............................................................................................ 89 Kovacs, Rachel S. / City University of New York, USA...................................................................... 127 Kubler, Andre / Imperial College London, UK................................................................................. 203 Kumar, Jitendra / Sikkim Manipal University, Gangtok, India........................................................ 330 Lach, Helen W. / Saint Louis University, School of Nursing, Saint Louis, USA................................ 289 Lee, Diane C. / Drexel University, USA.............................................................................................. 505 LeRouge, Cynthia M / Florida International University, Miami, USA............................................. 289  

Research Anthology on Improving Health Literacy Through Patient Communication and Mass Media, edited by Association, Information Resources Management, IGI Global, 2021. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/nyulibrary-ebooks/detail.action?docID=6686709. Created from nyulibrary-ebooks on 2021-09-02 06:30:41.



Copyright © 2021. IGI Global. All rights reserved.

Liuccio, Michaela / Sapienza University Rome, Italy........................................................................ 218 Mason, Alicia / Pittsburg State University, USA............................................................................... 143 Meddeb, Marwa / Carthage University, Tunisia............................................................................... 481 Medhekar, Anita / Central Queensland University, Australia.......................................................... 538 Moore, Jessica L. / Butler University, USA........................................................................................ 317 Moumtzoglou, Anastasius S. / P&A Kyriakou Children’s Hospital, Greece.................................... 635 Mukherjee, Samrat Kumar / Sikkim Manipal Institute of Technology, Sikkim Manipal University, Gangtok, India............................................................................................................ 330 Ngenye, Liza / George Mason University, USA................................................................................. 349 Nguyen, Julie / Central Queensland University, Australia................................................................ 538 Nurudeen, Nahimah Ajikanle / Lagos State University, Nigeria........................................................ 33 Ohs, Jennifer E / Saint Louis University, Saint Louis, USA............................................................... 289 Ojomo, Cynthia Omoseyitan / Afe Babalola University, Nigeria..................................................... 469 Okorie, Nelson / Covenant University, Nigeria................................................................................... 15 Oredola, Opeyemi Olaoluwa / Covenant University, Nigeria............................................................. 50 Owolabi, Toyosi Olugbenga Samson / Lagos State University, Nigeria............................................. 33 Oyero, Olusola / Covenant University, Nigeria................................................................................... 15 Oyesomi, Kehinde Opeyemi / Covenant University, Nigeria.............................................................. 50 Pernencar, Claudia / Nova Institute of Communication, Portugal................................................... 397 Peter, Ada Sonia / Covenant University, Nigeria................................................................................. 50 Prashad, Reshma / York University, Canada........................................................................................ 1 Rani, Jaya Rani / Sikkim Manipal Institute of Technology, Sikkim Manipal University, Gangtok, India.............................................................................................................................................. 330 Reis, Gorete / Évora University, Portugal......................................................................................... 274 Saboia, Inga / UFC Virtual, Brazil.................................................................................................... 397 Salaudeen, Mistura Adebusola / Hong Kong Baptist University, Hong Kong................................. 182 Sarper, Nazan / Kocaeli University, Turkey...................................................................................... 251 Seale, Deborah E / Des Moines University, Des Moines, USA.......................................................... 289 Spencer, Elizabeth A. / University of Kentucky, USA........................................................................ 143 Stamatopoulos, Kostas / Institute of Applied Biosciences, CERTH, Thessaloniki, Greece.............. 238 Tao, Donghua / Saint Louis University, Saint Louis, USA................................................................ 289 Trauth, Erin / High Point University, High Point, USA.................................................................... 558 Trocin, Cristina / Ca’ Foscari University of Venice, Italy................................................................ 588 Veloso, Ana Isabel / University of Aveiro, Portugal & DigiMedia, Portugal..................................... 108 Villafranca, Paloma López / University of Málaga, Spain................................................................ 163 Wray, Ricardo / Saint Louis University, Saint Louis, USA............................................................... 289 Wright, Kevin / George Mason University, USA............................................................................... 349 Xochelli, Aliki / Institute of Applied Biosciences, CERTH, Thessaloniki, Greece............................ 238

Research Anthology on Improving Health Literacy Through Patient Communication and Mass Media, edited by Association, Information Resources Management, IGI Global, 2021. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/nyulibrary-ebooks/detail.action?docID=6686709. Created from nyulibrary-ebooks on 2021-09-02 06:30:41.

Table of Contents

Preface.................................................................................................................................................... xi Section 1 Mass Communication, Health Awareness, and Challenges for Education Chapter 1 Back to the Basics: The Importance of Considering Health Literacy in the Development and Utilization of Consumer E-Health Interventions..................................................................................... 1 Reshma Prashad, York University, Canada Mei Chen, Seenso Institute for Public Health, Canada Chapter 2 Risk Communication for Viral Hepatitis Management Among Migrants............................................. 15 Evaristus Adesina, Covenant University, Nigeria Olusola Oyero, Covenant University, Nigeria Nelson Okorie, Covenant University, Nigeria Charity Ben-Enukora, Covenant University, Nigeria Babatunde Adeyeye, Covenant University, Nigeria

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Chapter 3 Indigenous Language Media and Communication for Health Purposes in the Digital Age.................. 33 Toyosi Olugbenga Samson Owolabi, Lagos State University, Nigeria Nahimah Ajikanle Nurudeen, Lagos State University, Nigeria Chapter 4 Indigenous Language Media, Communication, and Sickle Cell Disorder: Peculiarities of Indigenous Language Media in Tackling Misconceptions of Sickle Cell Disorder............................... 50 Opeyemi Olaoluwa Oredola, Covenant University, Nigeria Kehinde Opeyemi Oyesomi, Covenant University, Nigeria Ada Sonia Peter, Covenant University, Nigeria Chapter 5 Sexism in Medical Communication....................................................................................................... 70 Yasmin Grant, Imperial College Healthcare NHS Trust, UK  

Research Anthology on Improving Health Literacy Through Patient Communication and Mass Media, edited by Association, Information Resources Management, IGI Global, 2021. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/nyulibrary-ebooks/detail.action?docID=6686709. Created from nyulibrary-ebooks on 2021-09-02 06:30:41.



Chapter 6 Health Literacy and Ethnic Minority Populations................................................................................. 89 Dela Idowu, Gift of Living Donation, UK Gillian King, University of London, UK Section 2 Media Influence and Support Chapter 7 Portraying Rare and Misdiagnosed Diseases in Movies: A Content Analysis, 1980-2018................. 108 Liliana Vale Costa, University of Aveiro, Portugal & DigiMedia, Portugal Ana Isabel Veloso, University of Aveiro, Portugal & DigiMedia, Portugal Chapter 8 The Philip Seymour Hoffman Project: A Student-Generated, Media Literacy Focus on Opioid  Abuse................................................................................................................................................... 127 Rachel S. Kovacs, City University of New York, USA Chapter 9 Medical Tourism Patient Mortality: Considerations From a 10-Year Review of Global News Media Representations......................................................................................................................... 143 Alicia Mason, Pittsburg State University, USA Sakshi Bhati, Pittsburg State University, USA Ran Jiang, Soochow University, China Elizabeth A. Spencer, University of Kentucky, USA Chapter 10 Representation of Patients With Rare Diseases in Spanish Media...................................................... 163 Paloma López Villafranca, University of Málaga, Spain Chapter 11 Framing Family Planning: An Analysis of Nigerian Newspaper Coverage........................................ 182 Mistura Adebusola Salaudeen, Hong Kong Baptist University, Hong Kong

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Section 3 Patient-Provider Communication, Literacy, and Empowerment Chapter 12 Health Literacy and Patient -Reported Outcomes............................................................................... 203 Maria Irene Bellini, Imperial College London, UK Andre Kubler, Imperial College London, UK Chapter 13 Health-Related Communication and Rare Diseases: A Passport for the Patient Journey................... 218 Michaela Liuccio, Sapienza University Rome, Italy

Research Anthology on Improving Health Literacy Through Patient Communication and Mass Media, edited by Association, Information Resources Management, IGI Global, 2021. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/nyulibrary-ebooks/detail.action?docID=6686709. Created from nyulibrary-ebooks on 2021-09-02 06:30:41.



Chapter 14 Approaching Empowerment Holistically: are Physicians Willing And Able? The Case of Hematological Malignancies............................................................................................................... 238 Christina Karamanidou, Institute of Applied Biosciences, CERTH, Thessaloniki, Greece Kostas Stamatopoulos, Institute of Applied Biosciences, CERTH, Thessaloniki, Greece Aliki Xochelli, Institute of Applied Biosciences, CERTH, Thessaloniki, Greece Chapter 15 Health Literacy From a Pediatrician’s Perspective: Health Literacy................................................... 251 Nazan Sarper, Kocaeli University, Turkey Chapter 16 Learning to Live with Chronic Disease: Coronary Artery Disease..................................................... 274 Lisa Alves Gomes, University of Minho, Portugal Gorete Reis, Évora University, Portugal Chapter 17 Exploring Early Adopter Baby Boomers’ Approach to Managing Their Health and Healthcare....... 289 Deborah E Seale, Des Moines University, Des Moines, USA Cynthia M LeRouge, Florida International University, Miami, USA Jennifer E Ohs, Saint Louis University, Saint Louis, USA Donghua Tao, Saint Louis University, Saint Louis, USA Helen W. Lach, Saint Louis University, School of Nursing, Saint Louis, USA Keri Jupka, National Center for Parents as Teachers, Saint Louis, USA Ricardo Wray, Saint Louis University, Saint Louis, USA Section 4 Social Media and Virtual Support Groups

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Chapter 18 Exploring Healthy Connection: Communication, Social Networks, and Wellbeing........................... 317 Jessica L. Moore, Butler University, USA Chapter 19 Role of Social Media Promotion of Prescription Drugs on Patient Belief-system and Behaviour...... 330 Samrat Kumar Mukherjee, Sikkim Manipal Institute of Technology, Sikkim Manipal University, Gangtok, India Jitendra Kumar, Sikkim Manipal University, Gangtok, India Ajeya K Jha, Sikkim Manipal University, Gangtok, India Jaya Rani Rani, Sikkim Manipal Institute of Technology, Sikkim Manipal University, Gangtok, India Chapter 20 Online Social Support Groups/Communities: Implications of Theoretical and Empirical Findings for Individuals Coping With Health Concerns.................................................................................... 349 Liza Ngenye, George Mason University, USA Kevin Wright, George Mason University, USA

Research Anthology on Improving Health Literacy Through Patient Communication and Mass Media, edited by Association, Information Resources Management, IGI Global, 2021. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/nyulibrary-ebooks/detail.action?docID=6686709. Created from nyulibrary-ebooks on 2021-09-02 06:30:41.



Chapter 21 Impact of Patient Health Education on the Screening for Disease Test-Outcomes: The Case of Using Educational Materials From the Internet and Online Health Communities.............................. 370 Thierry O. C. Edoh, Technical University of Munich, Germany Chapter 22 How Is the Administrator’s Experience in Managing Health Facebook Groups? The Impact of Social Media in Patients With IBD...................................................................................................... 397 Claudia Pernencar, Nova Institute of Communication, Portugal Inga Saboia, UFC Virtual, Brazil Chapter 23 Social Support Through Digital Media? Breast Cancer Groups at Facebook..................................... 418 Aslıhan Ardıç Çobaner, Mersin University, Turkey Mine Gencel Bek, University of Siegen, Germany Chapter 24 Exploitation of Health on Instagram: Motivations, Social Support, and Influencers.......................... 436 Michael G Blight, North Central College, USA Chapter 25 Social Media Alternative for Health Communication in Nigeria........................................................ 453 Janet Aver Adikpo, Eastern Mediterranean University, Cyprus Patience Ngunan Achakpa-Ikyo, Benue State University, Nigeria Chapter 26 Media Awareness Preferences for Information on Sickle Cell Disorder Among University Students in Southwestern Nigeria........................................................................................................ 469 Cynthia Omoseyitan Ojomo, Afe Babalola University, Nigeria Taye Babaleye Babaleye, Lead City University, Nigeria

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Chapter 27 The Role of Social Marketing in Preventing the Spread of Non-Communicable Diseases: Case of  Tunisia.................................................................................................................................................. 481 Ines Mezghani Daoud, Carthage University, Tunisia Marwa Meddeb, Carthage University, Tunisia Section 5 Technological Tools for Health Literacy Promotion Chapter 28 Uberization of Healthcare.................................................................................................................... 498 Lizette Alvarez, University of Southern California (USC), USA

Research Anthology on Improving Health Literacy Through Patient Communication and Mass Media, edited by Association, Information Resources Management, IGI Global, 2021. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/nyulibrary-ebooks/detail.action?docID=6686709. Created from nyulibrary-ebooks on 2021-09-02 06:30:41.



Chapter 29 Promises and Challenges of Medical Patient Healthcare Portals in Underserved Communities: The Case of Einstein Medical Center Philadelphia (EMCP)............................................................... 505 Diane C. Lee, Drexel University, USA David Gefen, Drexel University, USA Chapter 30 My Digital Healthcare Record: Innovation, Challenge, and Patient Empowerment........................... 538 Anita Medhekar, Central Queensland University, Australia Julie Nguyen, Central Queensland University, Australia Chapter 31 Technologized Talk: Wearable Technologies, Patient Agency, and Medical Communication in Healthcare Settings.............................................................................................................................. 558 Erin Trauth, High Point University, High Point, USA Ella R. Browning, University of Pennsylvania, Philadelphia, USA Chapter 32 Empowering Patients Through Digital Technologies: The Case of Mobile Health Applications....... 588 Cristina Trocin, Ca’ Foscari University of Venice, Italy Enrica Croda, Ca’ Foscari University of Venice, Italy Chapter 33 Accessibility for Everyone in Health Communication Mobile Application Usage............................. 612 ihsan Eken, Istanbul Medipol University, Turkey Basak Gezmen, Istanbul Medipol University, Turkey Chapter 34 The Science of Individuality and Tailored M-Health Communication............................................... 635 Anastasius S. Moumtzoglou, P&A Kyriakou Children’s Hospital, Greece

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Index.................................................................................................................................................... 657

Research Anthology on Improving Health Literacy Through Patient Communication and Mass Media, edited by Association, Information Resources Management, IGI Global, 2021. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/nyulibrary-ebooks/detail.action?docID=6686709. Created from nyulibrary-ebooks on 2021-09-02 06:30:41.

xi

Preface

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Never before has information been so readily available and easily accessible to society. Through drivers such as social media and the internet, people are constantly connected to multiple news sources as well as the misinformation challenges that an influx of information can create. Medical information and the way in which healthcare practices and public health issues such as pandemics are communicated to society is an area that has been affected greatly by this proliferation of content. It is necessary to examine the impact that mass media has on the delivery of health information through various mediums, as well as how health professionals must improve their communication techniques in order to better convey necessary medical information to their patients. In doing so, patients will improve their health literacy, thus enabling them to become more empowered in their health decisions, as well as better able to navigate the multitude of health information and opinions that exist. Thus, the Research Anthology on Improving Health Literacy Through Patient Communication and Mass Media seeks to fill the void for an all-encompassing and comprehensive reference book covering the latest and most emerging research, concepts, and theories for those working in the healthcare profession or researching patient-provider communication. This one-volume reference collection of reprinted IGI Global book chapters and journal articles that have been handpicked by the editor and editorial team of this research anthology on this topic will empower health professionals, health researchers, medical students, professors, pharmaceutical companies, pharmacists, academicians, and anyone interested in how to promote health literacy. The Research Anthology on Improving Health Literacy Through Patient Communication and Mass Media is organized into five sections that provide comprehensive coverage of important topics. The sections are: 1. 2. 3. 4. 5.

Mass Communication, Health Awareness, and Challenges for Education; Media Influence and Support; Patient-Provider Communication, Literacy, and Empowerment; Social Media and Virtual Support Groups; and Technological Tools for Health Literacy Promotion.

The following paragraphs provide a summary of what to expect from this invaluable reference tool. Section 1, “Mass Communication, Health Awareness, and Challenges for Education,” highlights public health communication initiatives and challenges faced when attempting to educate and make the populace aware of health issues. The first chapter of this section, “Back to the Basics: The Importance of Considering Health Literacy in the Development and Utilization of Consumer E-Health Interventions,”

Research Anthology on Improving Health Literacy Through Patient Communication and Mass Media, edited by Association, Information Resources Management, IGI Global, 2021. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/nyulibrary-ebooks/detail.action?docID=6686709. Created from nyulibrary-ebooks on 2021-09-02 06:30:41.



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Preface

by Prof. Reshma Prashad of York University, Canada and Prof. Mei Chen of Seenso Institute for Public Health, Canada, indicates the problems associated with the lack of effective health literacy strategies in current consumer e-health interventions and then present a patient-centered, disease-specific, taskrelevant, and contextualized health literacy approach. The next chapter, “Risk Communication for Viral Hepatitis Management Among Migrants,” by Profs. Nelson Okorie, Olusola Oyero, Evaristus Adesina, Babatunde Adeyeye, and Charity Ben-Enukora of Covenant University, Nigeria, examines the role of risk communication in managing viral hepatitis among migrants at the different levels of pre-departure phase, travel phase, destination phase, interception phase and the return phase. The following chapter, “Indigenous Language Media and Communication for Health Purposes in the Digital Age,” by Profs. Toyosi Olugbenga Samson Owolabi and Nahimah Ajikanle Nurudeen of Lagos State University, Nigeria, observes that the reason most health information doesn’t get to the intended audiences and produce the desired effect is because they are not communicated in the most intelligible language to the people. The next chapter, “Indigenous Language Media, Communication, and Sickle Cell Disorder: Peculiarities of Indigenous Language Media in Tackling Misconceptions of Sickle Cell Disorder,” by Profs. Kehinde Opeyemi Oyesomi of Covenant University, Nigeria and Opeyemi Olaoluwa Oredola and Ada Sonia Peter of Covenant University, Nigeria, proposes that health education about the concept of SCD should be executed majorly in indigenous languages and through the indigenous media platforms. The following chapter, “Sexism in Medical Communication,” by Prof. Yasmin Grant of Imperial College Healthcare NHS Trust, UK, highlights that deeply engrained biases in medical communication still exist and are perpetrated by institutions and individuals, women included. The final chapter, “Health Literacy and Ethnic Minority Populations,” by Prof. Dela Idowu of Gift of Living Donation, UK and Prof. Gillian King of University of London, UK, illustrates how optimizing health literacy can benefit the delivery of healthcare to the population in a way that materially addresses the inequalities in the National Health Service (NHS). Section 2, “Media Influence and Support,” discusses the influence media has on communicating health issues to society as well as how it may aid in increasing medical literacy. The first chapter of this section, “Portraying Rare and Misdiagnosed Diseases in Movies: A Content Analysis, 1980-2018,” by Profs. Liliana Vale Costa and Ana Isabel Veloso of University of Aveiro, Portugal & DigiMedia, Portugal, examines the portrayal of rare and misdiagnosed diseases in nine movies from 1980 to 2018. The analysis embodies the representation of rare diseases and the suggested audiovisual strategies to comprehend the message conveyed. The next chapter, “The Philip Seymour Hoffman Project: A Student-Generated, Media Literacy Focus on Opioid Abuse,” by Prof. Rachel S. Kovacs of City University of New York, USA, demonstrates the prosocial role social media, and in particular Facebook, can play in media literacy by providing a framework for showcasing rigorous student research and harnessing creative responses to salient social welfare and policy issues. The following chapter, “Medical Tourism Patient Mortality: Considerations From a 10-Year Review of Global News Media Representations,” by Profs. Alicia Mason and Sakshi Bhati of Pittsburg State University, USA; Prof. Ran Jiang of Soochow University, China; and Prof. Elizabeth A. Spencer of University of Kentucky, USA, explores media representations of patient mortality associated with medical tourism within the global news media occurring between 2009-2019. The next chapter, “Representation of Patients With Rare Diseases in Spanish Media,” by Prof. Paloma López Villafranca of University of Málaga, Spain, reports on the representation of rare diseases through Spanish media and the way it evolved in the last six years. The findings highlight the effort that has been made by patient advocacy groups with rare diseases and their relatives and caregivers, who have been recognized and proactive to get the treatment and medication needed. The final chapter of this section, xii

Research Anthology on Improving Health Literacy Through Patient Communication and Mass Media, edited by Association, Information Resources Management, IGI Global, 2021. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/nyulibrary-ebooks/detail.action?docID=6686709. Created from nyulibrary-ebooks on 2021-09-02 06:30:41.

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Preface

“Framing Family Planning: An Analysis of Nigerian Newspaper Coverage,” by Prof. Mistura Adebusola Salaudeen of Hong Kong Baptist University, Hong Kong, examines the coverage of family planningrelated news in selected Nigerian online newspapers from September 2017 to April 2019, measuring the presence of eight news frames. Section 3, “Patient-Provider Communication, Literacy, and Empowerment,” examines improvements in the way that doctors, nurses, and other health professionals communicate with patients in order to further empower patients and help them feel empowered in their health decision making. The first chapter of this section, “Health Literacy and Patient-Reported Outcomes,” by Profs. Maria Irene Bellini and Andre Kubler of Imperial College London, UK, outlines a focus beyond life-prolonging therapy, aiming to minimize the negative effects of treatment, optimize quality of life, and align medical decisions with patient expectations. The next chapter, “Health-Related Communication and Rare Diseases: A Passport for the Patient Journey,” by Prof. Michaela Liuccio of Sapienza University Rome, Italy, discusses the role of information and communication to extract health data in rare diseases and reinforce physicianpatient interactions. It argues that information and communication are crucial to meet patients’ needs, drivers, and decision making that tend to occur during the patient’s journey (pre-diagnosis, diagnosis, and post-diagnosis). The following chapter, “Approaching Empowerment Holistically: are Physicians Willing And Able? The Case of Hematological Malignancies,” by Profs. Christina Karamanidou, Kostas Stamatopoulos, and Aliki Xochelli of Institute of Applied Biosciences, CERTH, Thessaloniki, Greece, explains that effective communication is key as it can contribute towards better clinical outcomes for patients as well as protect physicians from burnout due to emotional exhaustion. The next chapter, “Health Literacy From a Pediatrician’s Perspective: Health Literacy,” by Prof. Nazan Sarper of Kocaeli University, Turkey, discusses the controversy that exists about the benefits and risks of social media and mass media to health literacy due to information pollution. Self-diagnosis and marketing of under-the-counter drugs are problems of the digital age. Some projects aiming to improve digital health literacy skills will help people to reach reliable health-related information. Communication skills of healthcare professionals are also important. The following chapter, “Learning to Live with Chronic Disease: Coronary Artery Disease,” by Prof. Lisa Alves Gomes of University of Minho, Portugal and Prof. Gorete Reis of Évora University, Portugal, provides an overview of the impact of educational nursing interventions on health literacy and patient empowerment as a method to improve self-care skills that are necessary for dealing with chronic disease. The final chapter of this section, “Exploring Early Adopter Baby Boomers’ Approach to Managing Their Health and Healthcare,” by Prof. Deborah E. Seale of Des Moines University, Des Moines, USA; Prof. Cynthia M. LeRouge of Florida International University, Miami, USA; Profs. Jennifer E. Ohs and Donghua Tao of Saint Louis University, Saint Louis, USA; Prof. Helen W. Lach of Saint Louis University, School of Nursing, Saint Louis, USA; Prof. Keri Jupka of National Center for Parents as Teachers, Saint Louis, USA; and Prof. Ricardo Wray of Saint Louis University, Saint Louis, USA, discusses how early adopter baby boomers challenge prior notions about older adults’ passive approach to patient engagement. Section 4, “Social Media and Virtual Support Groups,” examines how social media and virtual support groups affect healthcare communication and supports patients. The first chapter of this section, “Exploring Healthy Connection: Communication, Social Networks, and Wellbeing,” by Prof. Jessica L. Moore of Butler University, USA, presents research on the salience of communication and social bonds in relation to human health and wellbeing, explores ways in which individual as well as relational health and wellbeing are affected by the use of social network sites, and argues a case for research on the health-related functions of expressive narratives in virtual settings such as online social networks.

Research Anthology on Improving Health Literacy Through Patient Communication and Mass Media, edited by Association, Information Resources Management, IGI Global, 2021. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/nyulibrary-ebooks/detail.action?docID=6686709. Created from nyulibrary-ebooks on 2021-09-02 06:30:41.

xiii

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Preface

The next chapter, “Role of Social Media Promotion of Prescription Drugs on Patient Belief-system and Behaviour,” by Prof. Samrat Kumar Mukherjee of Sikkim Manipal Institute of Technology, Sikkim Manipal University, Gangtok, India; Profs. Jitendra Kumar and Ajeya K. Jha of Sikkim Manipal University, Gangtok, India; and Prof. Jaya Rani Rani of Sikkim Manipal Institute of Technology, Sikkim Manipal University, Gangtok, India, performs a systematic literature search for papers that address social media-related challenges and opportunities for pharmaceutical drugs. It identifies the needs that propel patients to take recourse to SMPs; the benefits they derive from these and their limitations. The following chapter, “Online Social Support Groups/Communities: Implications of Theoretical and Empirical Findings for Individuals Coping With Health Concerns,” by Profs. Liza Ngenye and Kevin Wright of George Mason University, USA, examines these issues in greater detail as well as the theoretical and practical implications of this body of research for patients who use online support communities to help cope with and manage a variety of health issues. The next chapter, “Impact of Patient Health Education on the Screening for Disease Test-Outcomes: The Case of Using Educational Materials From the Internet and Online Health Communities,” by Prof. Thierry O. C. Edoh of Technical University of Munich, Germany, analyzes how medical education can contribute to improving screening outcomes. The following chapter, “How Is the Administrator’s Experience in Managing Health Facebook Groups? The Impact of Social Media in Patients With IBD,” by Prof. Claudia Pernencar of Nova Institute of Communication, Portugal and Prof. Inga Saboia of UFC Virtual, Brazil, clarifies the administrators’ user experience of social media health groups within the context of inflammatory bowel disease (IBD). The next chapter, “Social Support Through Digital Media? Breast Cancer Groups at Facebook,” by Prof. Aslıhan Ardıç Çobaner of Mersin University, Turkey and Prof. Mine Gencel Bek of University of Siegen, Germany, analyzes the use of online support groups for breast cancer in Turkey. After describing the general characteristics of such groups, the authors closely analyze the two Facebook groups on breast cancer. The analysis focuses on how the patients read the illness and their struggle to cope with the illness, how social support mechanisms are used, and which aims and motivations are foregrounded. The following chapter, “Exploitation of Health on Instagram: Motivations, Social Support, and Influencers,” by Prof. Michael G. Blight of North Central College, USA, focuses on the exploitative nature of Instagram as a community-based platform. The next chapter, “Social Media Alternative for Health Communication in Nigeria,” by Prof. Janet Aver Adikpo of Eastern Mediterranean University, Cyprus and Prof. Patience Ngunan Achakpa-Ikyo of Benue State University, Nigeria, assesses social media relevance as an alternative tool for health communication and clearly established that social media holds an integral locus in the day-to-day activities of the people, the same way it has for health communication. The following chapter, “Media Awareness Preferences for Information on Sickle Cell Disorder Among University Students in Southwestern Nigeria,” by Prof. Cynthia Omoseyitan Ojomo of Afe Babalola University, Nigeria and Prof. Taye Babaleye Babaleye of Lead City University, Nigeria, determines the preferred communication channels for creating awareness on SCD among university students in South-Western Nigeria. Survey research design was adopted. The final chapter of this section, “The Role of Social Marketing in Preventing the Spread of Non-Communicable Diseases: Case of Tunisia,” by Profs. Ines Mezghani Daoud and Marwa Meddeb of Carthage University, Tunisia, brings out the priority of enhancing the level of public awareness of NCDs. Section 5, “Technological Tools and Health Literacy Promotion,” examines how technological tools can assist with the promotion of patient literacy through such devices as digital records, mobile applications, and wearable technologies. The first chapter of this final section, “Uberization of Healthcare,” by Prof. Lizette Alvarez of University of Southern California (USC), USA, examines and discusses how xiv

Research Anthology on Improving Health Literacy Through Patient Communication and Mass Media, edited by Association, Information Resources Management, IGI Global, 2021. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/nyulibrary-ebooks/detail.action?docID=6686709. Created from nyulibrary-ebooks on 2021-09-02 06:30:41.

Preface

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the following three elements can be applied to implement a type of technology and to what audience: time, cost, and engagement. Through focused time, cost, and engagement efforts, healthcare can be optimized without reductions to the quality of information. The next chapter, “Promises and Challenges of Medical Patient Healthcare Portals in Underserved Communities: The Case of Einstein Medical Center Philadelphia (EMCP),” by Profs. David Gefen and Diane C. Lee of Drexel University, USA, describes some of the promises and challenges EMCP is currently facing in its attempts to convince communities in its catchment area to adopt that healthcare portal. The challenges are discussed in the contexts of poor social determinants of health (SDOH), unique social factors, as well as the importance of managing community trust in EMCP within the broader contexts of underserved communities of which the new portal is only part of the story. The following chapter, “My Digital Healthcare Record: Innovation, Challenge, and Patient Empowerment,” by Profs. Anita Medhekar and Julie Nguyen of Central Queensland University, Australia, describes My Health Record and its benefits, but also the challenge for the healthcare practitioners, hospital staff, as well as patients as consumers to accept, embrace, and uptake digital technologies and manage their healthcare records amidst concerns of slow adoption by the patient, data privacy, and implications of the secondary use of their personal data by non-government entities. The next chapter, “Technologized Talk: Wearable Technologies, Patient Agency, and Medical Communication in Healthcare Settings,” by Prof. Erin Trauth of High Point University, High Point, USA and Prof. Ella R. Browning of University of Pennsylvania, Philadelphia, USA, examines patient use of and feelings about wearable technologies for health attainment and management. The following chapter, “Empowering Patients Through Digital Technologies: The Case of Mobile Health Applications,” by Profs. Cristina Trocin and Enrica Croda of Ca’ Foscari University of Venice, Italy, investigates opportunities and challenges of patient empowerment and mobile health. The next chapter, “Accessibility for Everyone in Health Communication Mobile Application Usage,” by Profs. Ihsan Eken and Basak Gezmen of Istanbul Medipol University, Turkey, carries out user-based usability testing on the axis of e-nabız application with female users above 65 years selected according to certain criteria. The final chapter, “The Science of Individuality and Tailored M-Health Communication,” by Prof. Anastasius S. Moumtzoglou of P&A Kyriakou Children’s Hospital, Greece, envisions tailored m-health communication in the context of the science of individuality, emphasizing the variability, stability, and centrality of the individual. Although the primary organization of the contents in this work is based on its five sections, offering a progression of coverage of the important concepts, methodologies, technologies, applications, social issues, and emerging trends, the reader can also identify specific contents by utilizing the extensive indexing system listed at the end. As a comprehensive collection of research on the latest findings related to medical communication, the Research Anthology on Improving Health Literacy Through Patient Communication and Mass Media provides health professionals, health researchers, medical students, professors, pharmaceutical companies, pharmacists, academicians, and anyone interested in how to promote health literacy with a comprehensive reference that will enable the empowerment of patients globally. Given the need for better patient literacy, further patient-provider communication, and other aspects supporting health literacy, this extensive book presents the latest research and best practices to address these challenges and provide further opportunities for improvement.

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xv

Section 1

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Mass Communication, Health Awareness, and Challenges for Education

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1

Chapter 1

Back to the Basics:

The Importance of Considering Health Literacy in the Development and Utilization of Consumer E-Health Interventions Reshma Prashad York University, Canada Mei Chen Seenso Institute for Public Health, Canada

ABSTRACT

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Health literacy is a critical foundation that needs to be considered prior to the development and deployment of consumer e-health technologies. The authors indicate the problems associated with the lack of effective health literacy strategies in current consumer e-health interventions and then present a patient-centered, disease-specific, task-relevant, and contextualized health literacy approach. The goal of such an approach is to help patients better understand their illnesses make sense of their health data, make informed decisions, and more effectively manage their health conditions. The authors make five recommendations concerning health literacy in order to make e-health interventions effective. They also describe next-generation health literacy interventions that take advantage of emerging technologies such as speech recognition, natural language processing, artificial intelligence, automatic translation, and augmented reality. Finally, the authors point out a research and development direction towards an intelligent, integrated, and connected consumer e-health solution.

DOI: 10.4018/978-1-6684-2414-8.ch001

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Research Anthology on Improving Health Literacy Through Patient Communication and Mass Media, edited by Association, Information Resources Management, IGI Global, 2021. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/nyulibrary-ebooks/detail.action?docID=6686709. Created from nyulibrary-ebooks on 2021-09-02 06:30:41.

 Back to the Basics

INTRODUCTION There has been a proliferation of technology utilization in healthcare over the last decade, particularly consumer health. One of the main reasons for this focus is the staggering increase in chronic illnesses and comorbidities, which leads to unsustainable healthcare costs (Curtis, Cheng, Rose & Tsai, 2011). Therefore, healthcare providers are utilizing eHealth interventions to collaborate with patients to help them manage their conditions to prevent exacerbations that are costly to the healthcare system. However, adoption and use of these consumer eHealth interventions by patients have been low. The main factors contributing to the low rate of adoption and utilization is health illiteracy, coupled with low digital literacy, language and cultural barriers of the intended users (Nutbeam, 2000). Health literacy is of great importance to patients because they need to comprehend the health information presented to them in order to follow their doctor’s instructions and actively participate in decision making about their health and wellbeing (Norman & Skinner, 2006b). Health literacy aids patients in proactively managing their conditions to prevent further exacerbations. Health literacy can also help patients in discerning the quality and credibility of health information available online to determine its applicability to their conditions (McCray, 2005). The lack of health literacy, on the other hand, negatively affects patients, their families, their caregivers and the overall healthcare system both in terms of clinical and financial outcomes. This chapter discusses the significance of health literacy in facilitating optimal chronic disease management and in adopting consumer health technology. It first presents a background of the topic, followed by a discussion of the benefits of health literate patients. The challenges associated with the lack of considerations and effective health literacy strategies in current consumer eHealth interventions are addressed. Furthermore, the challenges concerning access limitations for people with disabilities and the lack of considerations about linguistic and cultural competency are discussed. Finally, practical strategies of how healthcare organizations can begin their journey of promoting health and digital literacy are recommended, and examples of effective health literacy interventions are provided.

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BACKGROUND The World Health Organization (WHO) defines chronic illnesses as conditions/diseases that persist for more than three months and cannot be cured with medications or vaccines (World Health Organization, 2017). Given that chronic illnesses do not disappear, healthcare organizations have to treat chronically ill patients on an ongoing basis for the rest of their lives. The cost of caring for chronically ill patients is economically unsustainable, and patients experience poor health outcomes as a result of receiving episodic care, this has a significant impact on the patient’s quality of life (Wodchis, Dixon & Anderson, 2015). Chronic diseases, such as heart disease, stroke, cancer, chronic respiratory diseases, and diabetes are the leading cause of mortality in the world, representing 60% of all deaths (World Health Organization, 2017). This invisible epidemic is an under-appreciated cause of poverty and hinders the economic development of many countries. In Canada, 68 billion dollars is spent annually on care for chronically ill patients, and that amount rises to 190 billion dollars when the indirect costs (sick days and loss of productivity) are added (Wodchis, Dixon & Anderson, 2015). Current approaches to chronic disease management are ineffective and result in a low clinical value (Wodchis, Dixon & Anderson, 2015). In addition to suboptimal clinical effectiveness, chronic illnesses 2

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 Back to the Basics

have a significant negative financial impact on both patients and the healthcare system. Effective and efficient chronic disease management is the first critical and essential step in transforming the healthcare system. A major shortcoming of current approaches is the collection of episodic data that is not beneficial to the proactive management of chronic conditions. Healthcare organizations have come to realize this and are therefore seeking ways to proactively engage patients via Consumer eHealth interventions in their homes and communities (Curtis, Cheng, Rose & Tsai, 2011). Given healthcare organizations interest in engaging patients via consumer eHealth interventions (portals, mobile technologies) coupled with patients’ interests in utilizing these technologies, health and digital literacy have become even more critical. However, many healthcare organizations have taken the wrong approach to engaging chronically ill patients as they have assumed that patients have both the health and digital literacy skills to accurately interpret and comprehend the complex health/medical information presented to them (Norman & Skinner, 2006b). Many research studies suggests that optimal benefits cannot be realized if patients are not provided with accurate and timely information from credible sources to inform their active participation and decision making in managing their chronic illnesses (Mancuso, 2009; Snowdown et al., 2015; Gruman, 2014). Discussed below are some of the benefits that can be achieved if healthcare organizations undertake the right approach to engaging, educating and empowering patients to utilize consumer eHealth interventions to manage their chronic conditions.

BENEFITS OF HEALTH LITERATE PATIENTS

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Health literacy requires a complex combination of knowledge of ones’ health and general health information (McCray, 2005). Patients need to not only understand their health status but also need to combine that with general health information to interpret its applicability accurately. Many studies show that patients with a lower socioeconomic status and low literacy levels choose to avoid utilizing consumer eHealth interventions due to a lack of health literacy and are further marginalized by a lack of support from their care providers in interpreting the information (Eng et al., 1998). The effective and efficient management of chronic illnesses requires engaged and informed patients. This encompasses providing health information to patients to facilitate their understanding of the factors contributing to their health, knowledge about their conditions, informed decision making about available treatments (Snowdown et al., 2015). There are many benefits to patients being health and digitally literate, this includes increased interest, increased engagement, and increased compliance with treatment plans and ultimately increased the level of adoption and utilization of consumer eHealth interventions (Veenhof, Clermont & Sciadis, G, 2005). Discussed below are the benefits of promoting health and digital literacy to optimize the value of consumer eHealth interventions.

Patient Engagement Healthcare organizations have recognized the need to engage patients in their care. Many studies have shown that engaged patients are more motivated and likely to conduct self-care (Wagner, 1998; Skinner, 2002). However, a critical factor in creating “engaged patients” is the ability to educate them about their illnesses, provide them with credible sources of health information in a timely manner and provide ongoing support throughout their journey (Wagner, 1998). Pairing the above strategies with providing access to their health records via portals or mobile devices have proven to be more effective than only 3

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 Back to the Basics

providing them with access to their record via portals or mobile technologies (Snowdown et al., 2105). Ensuring that patients are health literate is foundational to the success of any eHealth initiatives in which patients are the end users (Norman & Skinner, 2006a).

Patient Education Appropriate patient education is critical to the success of any consumer eHealth interventions. Many eHealth initiatives have produced less than optimal results because of the failure to acknowledge the importance of patient education (Parker, Baker, Williams & Nurss, 1995). Some of the critical factors that are often ignored or missed by healthcare organizations are the lack of consideration of the patient’s health literacy level, lack of consideration for the patient’s language, lack of consideration of the patient’s age and lack of consideration for patients with disabilities. When healthcare organizations do not consider the patient’s health literacy level, they are not providing the patient with the full opportunity to benefit from the eHealth intervention. Raw medical data is mostly complex for the average patient population; therefore, when healthcare organizations do not break down the information to a reasonable literacy level, patient does not benefit from having access to the information (Norman & Skinner, 2006b). As a result, patients turn to the internet to help them interpret the data and are very likely to come across non-credible sources of health information that could be detrimental to them (Institute of Medicine, 2004). Unsuspecting patients can be led into buying non-prescribed harmful medications or could be given unprofessional medical advice that can cause harm. It is therefore vital that healthcare organizations take the responsibility of providing their patients with credible sources of disease-specific health information to help them improve their health literacy levels and ensure that benefits can be realized from having access to their health information. Healthcare organizations can help patients enhance their health literacy levels by ensuring that the health information provided is at a reasonable reading level and help patients to make connections with the data and their health (Veenhof, Clermont & Sciadis, G, 2005).

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Patient Empowerment/Activation One of the main goals of patient engagement via consumer eHealth interventions is to empower/activate patients to become active participants and decision-makers in their care. Patients that are engaged and empowered through education are more likely to have better health outcomes as a result of proactive management of their conditions. (Wagner, 1998). Additionally, they tend to comply better with treatment plans and have a better sense of control over the impact of the conditions on their lives. Health literacy is the vehicle through which patients can be engaged, educated and empowered to take actions to change their behaviors and improve their health outcomes. It is, therefore, the responsibility of the healthcare organizations to ensure that patients are supported with disease-specific credible health information to inform their decision-making capabilities (Zelmer & Hagens, 2016). Informed decision-making is critical in the management of chronic conditions, as patients are constantly provided information upon which they have to make a decision. Therefore, clarification and support are essential for long-term behavioral changes and compliance to treatment plans. A lack of compliance is one of the critical factors influencing poor behavioral changes and subsequently health outcomes (Schulz & Nakamoto, 2013).

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 Back to the Basics

CURRENT CHALLENGES

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Despite the promising benefits of utilizing consumer eHealth interventions for chronic disease management, the lack of health and digital literacy has significantly impeded the full propensity of the benefits that can be realized (Nielsen-Bohlman, Panzer & Kindig, 2004). The negative impacts of the lack of or low levels of health and digital literacy will be discussed in this section. Additionally, challenges with the lack of linguistic and cultural competency in eHealth will also be addressed. This subsection will focus on an in-depth discussion of these issues and the impacts on the management of chronic conditions. To put this discussion in context, the strategies currently used to promote health literacy in consumer eHealth interventions will be reviewed along with their benefits and limitations. In general, health literacy education is lacking in all types of eHealth interventions. The majority of health-related technology developers do not consider health literacy when they develop their digital patient record systems, mobile health apps or self-monitoring devices, since their primary goal is to collect, store, and display personal health-related data (Gruman, 2014). As a result, when healthcare organizations deploy such technologies to empower consumers, they often provide access to patient record systems or other eHealth technologies without any health literacy component. Although consumers appreciate the timely access to their health data from patient record systems or their mobile devices, the most significant challenge they face is to make sense of the data and use it to manage their conditions (Zelmer & Hagens, 2016). Some patients feel that health IT solutions fall short of providing them with the information they need. In particular they do not always help them to understand their situation (e.g., why is my new prescription medication making me itch), make informed choices, or guide changes in behavior or changes in their treatment (Eng et al, 1998). Many patients desire the right information at the right time, particularly information about what action they need to take to follow through on medical advice and information that allows them to make informed choices, improve their care and treatment outcomes (Gruman, 2014). It has become clear to many healthcare organizations that have deployed eHealth technologies that a health literacy component is essential in helping patients to understand and use their health data to guide their self-care (Snowdown et al., 2105). These organizations either add some patient education materials copied from the Internet or add information from a licensed health information library for patients to browse. In such cases, the information provided is general and simplistic; it is an “add-on” rather than an integral part of the eHealth solution. This type of information can be browsed independently and often do not address a wide range of issues with which patients are concerned. In most cases, the health literacy component is inadequate and isolated from the tasks of making sense of the patient data, thus using such data does not always improve disease management, instead it results in the following problems.

Low Rates of Adoption Low rates of adoption of eHealth interventions are profoundly influenced by a patient’s level of health literacy (Rootman, 2003). Patients with low levels of health literacy who are not provided education or support through their healthcare providers are more likely to ignore the benefits of eHealth tools and therefore contribute to the low rates of adoption. For both the healthcare organizations and patients to benefit from the implementation of eHealth tools, health literacy levels need to be considered early in the development stage. Also, patients should be given the opportunity to provide feedback on both

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 Back to the Basics

the education materials, as well as the usability of the eHealth tool (portals, mobile applications, etc.) (Zelmer & Hagens, 2016).

Low Rates of Sustained Utilization Another challenge often faced by healthcare organizations that have implemented eHealth tools are low rates of sustained utilization (Curtis, Cheng, Rose & Tsai, 2011). Some organizations have up to a 50% reduction in utilization rates within a three-month period (Kim et al., 2016). Many factors that contribute to these dismal results, two of the most critical factors being the patients’ ability to comprehend the health/medical information presented to them and the second being the user-friendliness of the eHealth tool utilized (Kim et al., 2016). Despite the fact that consumer digital health tools are being heavily implemented for over a decade now, healthcare providers are still not fully acknowledging the importance of the two factors mentioned above. Within the Canadian context, surveyed patients consistently rate these two factors as the most important when deciding to continue or stop utilizing an eHealth tool (Zelmer and Hagens, 2016). Healthcare providers and organizations need to pay attention to these results if they intend to engage patients to become active participants in their care. Most importantly, patients should not be expected to comprehend and take action on complex health/medical information. Healthcare providers and organizations need to play an active role in ensuring that these two criteria are met to optimize patient adoption.

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Lack of Linguistic and Cultural Competency Considerations In the few cases where consumer eHealth interventions were targeted at marginalized patient populations, the lack of linguistic considerations further exacerbated the inequities and inequalities faced by this patient population (Sarkar et al., 2011). For example, despite the fact that a high percentage of marginalized patient populations includes immigrants whose first language is not English, minimal effort is placed on ensuring that literacy standards are met to accommodate these patient populations (Tieu et al., 2017). The actions described above further exacerbate the discrimination faced by the patients who most need these interventions to aid the management of their conditions (Sarkar et al., 2011). Instructions and guidance materials are not translated to accommodate the populations whose first language is not English; as a result, minority/immigrant populations are excluded due to their cultural and language differences. Similarly, some eHealth interventions promote disparities due to variances in education levels related to literacy (Cammaerts, 2003). Not only are marginalized and immigrant patients not able to understand the language utilized in some eHealth interventions due to language barriers, but they are also not able to comprehend the content of the message due to its complexity. The language in some eHealth interventions are too complex for marginalized patients with lower levels of education; they are not able to comprehend the instructions or medical results in the applications (Yamin et al., 2011). For example, one consumer eHealth intervention utilized in Canada provides only numerical cancer staging data to patients without providing a “legend” table explaining what the various stages are. Patients find this information confusing and turn to the Internet to help them with the classification. However the information the encounter is even more confusing to them. This results in less interest and participation from marginalized patient groups including immigrant populations. Another area that is often ignored in eHealth interventions is cultural competency. This refers to one’s ability to understand, acknowledge, and display sensitivity to another person’s culture, traditions, 6

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 Back to the Basics

or language. In a healthcare context, cultural competence is the providers and organizations ability to deliver health care services efficiently that meet the social, cultural and linguistic needs of patients (Yamin et al., 2011). A culturally competent healthcare system can help to improve clinical outcomes and quality of care. Cultural competency is a crucial indicator of whether patients from minority groups will uptake a specific technology or intervention (Cammaerts, 2003). Many eHealth interventions ignore cultural competency, for example, cultural impacts are not considered when solutions are designed to promote wellbeing.

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Limitations for Seniors and People With Disabilities Another form of discrimination faced by marginalized patients is ageism. Many eHealth interventions do not consider usability factors such as ease of use or size of text in the design of these applications; these factors cause challenges for patients (Tieu et al., 2017). As a result, patients with low vision or disabilities are automatically excluded from participating in the utilization of these interventions. In many cases, diabetes applications are failing to reach patients who may become blind as a result of diabetes (Sarkar, 2011). This defeats the purpose of the mobile diabetes applications which is to promote utilization of the tool to reduce further deterioration. Consumer eHealth interventions can create limitations for people with disabilities, for example, if a patient is not able to see instructions on a mobile diabetes application, they should be provided with voice support when utilizing this type of technology (Sarkar, 2011). It is therefore vital that healthcare providers and healthcare organizations ensure that consumer eHealth interventions are accessible to patients with disabilities; this would provide an opportunity for equitable utilization of healthcare resources and eliminate the potential for exclusion as a result of physical and mental disabilities (Yamin et al., 2011). For example, if a patient has a tremor in his/her hand he/she may not be able to utilize a mouse pointer, therefore other options for selecting or pointing needs to be available for this patient to fully utilize the technology. The omission of these considerations provides further opportunities for discrimination and exclusion. Seniors are another group of patients that consumer eHealth interventions can create challenges for. Seniors have multiple conditions and illnesses such as hand tremors, arthritis, cataracts and other physical challenges. As a result, consumer eHealth interventions can potentially cause exclusion to accessing healthcare services (Yamin et al., 2011). This further exacerbates current challenges for seniors and results in discouraging them from trying eHealth interventions that can be potentially beneficial to them. Also, consideration has to be made around costs to senior patients. Senior patients are unlikely to purchase expensive software or hardware. For example, in one study, senior patients preferred to use non-digital trackers to monitor their glucose because of the associated costs (Kim et al., 2016). Therefore, care providers and healthcare organizations need to reflect on this when considering various technologies and services for remote monitoring.

Limited Success With Consumer eHealth Interventions Consumer eHealth interventions have been widely implemented and utilized for well over a decade now; however, many healthcare providers and organizations are reporting suboptimal results based on their expectations around adoption and sustained utilization (Zhao, Freeman & Li, 2016). For example, one of the oldest patient portals implemented in Canada is now ten years old and is still experiencing low 7

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 Back to the Basics

sustained utilization due to the poor presentation of patients’ medical records. Patients are not provided disease-specific credible sources of health information within the portal. Patients have to find information about the meaning of their health record on the web or clarify results with their healthcare providers. Additionally, most of the health/medical information provided to patients via portals are still technically complicated in terms of language (Tieu et al., 2017). Patients would require a mid-level to a high level of medical knowledge to comprehend the information provided to them. Health/medical information is not provided to patients at an accessible reading level that is beneficial to patients of all cultural or educational backgrounds (Yamin et al., 2011). As discussed throughout this chapter, several factors contribute to poor results with eHealth interventions; these include a lack of considerations of patients/consumers health literacy levels, digital literacy levels, cultural backgrounds, education levels, disabilities, and age.

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SOLUTIONS AND RECOMMENDATIONS Consumer eHealth interventions are changing the nature of patient-physician interactions (Zelmer & Hagens, 2016). By leveraging these tools, healthcare organizations have the opportunity to provide patient-centered care, while achieving operational efficiencies. However, to achieve this goal, they have to consider health and digital literacy education and ensure it is an integral part of consumer eHealth interventions, before investing significant amounts of resources and effort in implementing and promoting eHealth tools. They can make use of a broad range of communication strategies to ensure that patients are trained to understand health information and its applicability to their health and wellbeing (Nutbeam, 2000). This will promote active engagement among patients and ultimately promote patient empowerment to become active participants in their care (Snowdown et al., 2015). Only through health and digital training can eHealth tools be utilized efficiently for patient benefit. This section will conclude by providing practical strategies of how healthcare organizations can begin their journey of educating and empowering patients through health and digital literacy to become active participants in their care and efficiently utilize consumer eHealth interventions to manage their chronic diseases. In particular, we advocate a patient-centered eHealth approach that integrates wellness, prevention, self-care education and chronic disease management. This approach requires that healthcare organizations change their perspective of patients from “end-users” to “front-seat drivers” and conduct a careful user analysis to design or select consumer eHealth applications that serve its intended purpose. We suggest that healthcare organizations conduct user studies to understand the tasks, challenges, concerns, and specific health literacy needs of the targeted users. We will also address the importance of considering the fundamental literacy, language, and cultural barriers of the targeted users when designing or selecting consumer eHealth interventions. We will recommend a patient-centered, disease-specific, task-relevant, and contextualized health literacy approach that enables patients to make sense of their health records and understand how such data can help them make informed decisions such as better managing their medications and lifestyle changes that contribute to their treatment outcomes and overall health. To help consumers understand their health conditions and use their medical data to manage their health conditions effectively, specific requirements need to be met. These requirements are:

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High-Quality, Up-to-Date Health Information From Reliable Sources There is a general lack of health literacy integration in consumer eHealth interventions (Yamin et al., 2011). As a result, most users turn to the Internet to search for health information that they need. However, as the quality of health information on the Internet varies considerably, both physicians and patients are concerned about the credibility of the medical information that general search engines provide. There is a need to identify and provide high-quality health information from trusted sources and create a medical search engine that can provide high-quality medical information in the way that helps consumers understand and manage their health conditions (Chen & Decary, 2017), especially where patient education is concerned. Furthermore, it is vital to ensure that the information is aligned with the latest clinical guidelines, so that the information patients receive reflects the best practices in the field of medicine.

Disease-Specific and Task-Relevant Information Support The scope of patient education content should cover the general health information related to preventive education and wellness promotion, as well as disease-specific and task-relevant information. The emphasis on disease-specificity and task relevance is significant because patients with different health conditions face a unique set of tasks and associated challenges. Therefore, the health information provided to patients needs to be relevant to their disease types, stages, and the specific tasks that patients need to perform in their self-management of the disease to improve their treatment outcomes. The information should help patients not only to understand their conditions, but to learn different ways to manage the multiple aspects of their conditions. This includes gaining the skills to make informed choices, effectively manage their medications and other treatments, modify unhealthy behaviors to improve treatment outcomes. In addition, patients need to have access to information that helps them deal with unforeseen challenges, complications, and concerns; they also need to know when, why, and how to make a lifestyle change or medication adjustment.

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Contextualized Information Support and On-Demand Learning Ideally, patients should follow a coherent education curriculum to learn everything they need to know about their health conditions and develop the ability to manage their conditions. However, the reality is that patients have to work, a family to care for, and many other responsibilities. Therefore, they do not have the time, energy and motivation to spend more time than they have to when dealing with their health conditions. Thus, providing contextualized, on-demand health literacy education while patients are performing the tasks related to their care might be the most efficient and practical way for them to learn. For instance, in the process of inspecting glucose monitoring data, hyperlinks can provide users with the crucial information that they need in order to make the connections between the levels of glucose and their diet and exercise. Information can also be provided on how their treatments should be adjusted based on the results. Depending on the needs and preferences of the patients, such contextualized information support should enable the patients to learn everything they perceive as relevant, give them the opportunity to engage in on-demand learning. For instance, in the context of self-initiated care activities, the patients should be given access to relevant online courses about their conditions, and comprehensive information on a given topic if they request it. 9

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Multiple Modes of Effective Presentations Health information needs to be presented in a way that is understandable to the target patients to facilitate utilization of the information for their self-care (Skinner, 2002). There is a variety of knowledge and skills that patients need to learn, and some are conceptual in nature (disease definition, causes, development), and some are related to procedures and process (e.g., insulin injection, prosthetic fitting). To facilitate patient understanding, we recommend the use of multiple modes of presentation, adding audio and visuals to textual information whenever possible. Especially for demonstrating the procedures or processes, we recommend the use of graphic illustrations, animations, or videos in addition to descriptive text. This is especially useful for people who have low levels of general literacy, poor language competence and people with specific disabilities.

Accommodation to Diverse Population Needs Most countries in North America and Europe are enriched by their cultural and language diversity. However, for eHealth technology developers, such diversity imposes one of the most significant challenges in application development. As a result, the vast majority of health websites, patient record systems, mobile apps and mobile self-care devices are created in one language only, mostly in English. As the eHealth technology market grows, it is necessary to enable multi-language capacity to meet the diverse needs of users from different cultural and language background. Also, developers should pay particular attention to the needs of seniors because that population group is at high risk for chronic diseases. Furthermore, the needs of people with lower levels of literacy need to be considered, because they are more likely to misunderstand medical directions, misuse medication and have more drug-related accidents. Therefore, it is essential to provide information in the way that they understand and can benefit from. There is no easy solution to accommodate the needs of diverse populations, however adding audio and visuals to textual information could help. In addition, even if some users lack the vocabulary to describe their symptoms while they search for health information, it is possible to use body images with body part indications and symptom descriptions so that users can point and click to find the information that is useful to them.

FUTURE DIRECTIONS OF RESEARCH AND DEVELOPMENT

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Next Generation Health Literacy Interventions An ideal model of patient education is one that can provide patients with high-quality medical information that is tailored to their specific diseases, challenges, preferences, and needs. The information should be provided in such a way that patients can truly understand it regardless of their general literacy level, language competence, and other limitations (Chen & Decary, 2017). With new technologies such as speech recognition, natural language processing, artificial intelligence, automatic translation, and augmented reality, this can become a reality. For instance, imagine that an intelligent medical agent available on a smartphone can have conversations with patients and give them the health-related advice they need using speech recognition, natural 10

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language processing, and artificial intelligence technologies. Through language identification and automatic translation, an intelligent agent could also understand the language that patients speak, respond to them in their language of choice and even translate health information from one language to another in real time. Patients could see the organs inside of their bodies via augmented reality and get information on how to deal with different symptoms and diseases. Through image recognition, a mobile device could scan the diseased skin of a patient then provide information about diagnosis, treatment options, and self-care. If the patient needs further advice or services, they could then consult a skin specialist via telemedicine without waiting or leaving their home. New technology developments can make these options possible in just a few years if countries have national strategies that leverage these resources and talents to develop such eHealth products that could benefit their citizens.

Intelligent, Integrated, and Connected Consumer eHealth Solutions Some of the descriptions above might seem fictional; however, some companies have already been successfully working towards these solutions, which integrate patient education and eHealth interventions using emerging technologies. For instance, Visiomed Group, a French company specializing in next-generation medical electronics has developed an integrated consumer eHealth solution that consists of a variety of smart self-monitoring devices, an artificial intelligence diagnostic system that uses selfmonitoring data from mobile devices to identify health problems and a telemedicine network linked to patient records and communication logs, as well as a health information library (Visiomed Group, 2017). Another company, Cogilex R&D, a national language processing, artificial intelligence (AI) and consumer health information technology firm from Canada has been developing an AI-based patient self-care application. This application integrates (a) an AI conversation agent that understands healthrelated instruction and actions using speech recognition and natural language processing (b) comprehensive contextualized health information support and searches from high-quality medical sources on the Internet (c) access to patient data from mobile self-monitoring devices and electronic health records and (d) access to online health-related services such as e-booking, telemedicine and prescription renewal (Chen & Decary, 2017). In addition, other technology companies and smart device makers are working towards this vision of intelligent, integrated and connected consumer eHealth solutions. With such high efforts in research and development, the future of consumer eHealth technology looks very promising.

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CONCLUSION In conclusion, we believe that only when patients have acquired the necessary health literacy for understanding their health conditions, can they make sense of their health data and achieve the desired outcomes. Patients will measure their health outcomes in terms of their perceived abilities to deal with unforeseen challenges, make informed choices, successfully manage their medications and other treatment interventions and form healthy behaviors. Patients will judge whether they will adopt and use a new eHealth application based on such perceptions. To increase the adoption and usage of consumer digital health interventions, health literacy/patient education must be an integral part of their development.

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REFERENCES Cammaerts, B. (Ed.). (2003). Beyond the digital divide: reducing exclusion, fostering inclusion. Brussels: University Press. Chen, M., & Decary, M. (2017). Seenso Health – Medical Search Made Easier and Better, in Privacy. Medical Search Engine Exhibited at Consumer Electronics Show 2017 (CES 2017), Las Vegas, NV. Chen, M., & Decary, M. (2017). A Prototype of Seenso Self-care Hub. Exhibition at The Canadian Conference on Medical Education 2017 (CCME 2017), Winnipeg, MA. Curtis, J., Cheng, S., Rose, K., & Tsai, O. (2011). Promoting adoption, usability and research for personal health records in Canada: The MyChart experience. Health Management Forum, 24(3), 149–154. doi:10.1016/j.hcmf.2011.07.004 PMID:22165576 Eng, T., Maxfield, A., Patrick, K., Deering, M. J., Ratzan, S. C., & Gustafson, D. H. (1998). Access to health information and support: A public highway or private road? Journal of the American Medical Association, 280(15), 1371–1375. doi:10.1001/jama.280.15.1371 PMID:9794322 Gruman, J. (2014). Self-Monitoring Health IT Falls Short of Providing the Information We Need. Available from: http://www.cfah.org/blog/2014/self-monitoring-health-it-falls-short-of-providing-theinformation-we-need Institute of Medicine. (2004). Health literacy: A prescription to end confusion. Washington, DC: Institute of Medicine. Kim, J. Y., Wineinger, N. E., Taitel, M., Radin, J. M., Akinbosoye, O., Jiang, J., ... Steinhubl, S. (2016). Self-Monitoring utilization patterns among individuals in an incentivized program for healthy behaviours. Journal of Medical Internet Research, 18(11), e292. doi:10.2196/jmir.6371 PMID:27856407 Mancuso, J. M. (2009). Assessment and measurement of health literacy: An integrative review of the literature. Nursing & Health Sciences, 11(1), 77–89. doi:10.1111/j.1442-2018.2008.00408.x PMID:19298313 McCray, A. T. (2005). Promoting Health Literacy. Journal of the American Medical Informatics Association, 12(2), 152–163. doi:10.1197/jamia.M1687 PMID:15561782 Mukhopadhyay, S., & Postolache, O. (Ed.). (2013). Pervasive and mobile sensing and computing for healthcare: technological and social issues. Heidelberg, Germany: Springer.

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Nielsen-Bohlman, L., Panzer, A. M., & Kindig, D. A. (2004). Health Literacy, A Prescription to End Confusion. Washington, DC: The National Academies Press. Norman, C. D., & Skinner, H. A. (2006a). eHEALS: The eHealth Literacy Scale. Journal of Medical Internet Research, 4(4), e27. doi:10.2196/jmir.8.4.e27 PMID:17213046 Norman, C. D., & Skinner, H. A. (2006b). eHealth literacy: Essential skills for consumer health in a networked world. Journal of Medical Internet Research, 8(2), e9. doi:10.2196/jmir.8.2.e9 PMID:16867972

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Nutbeam, D. (2000). Health literacy as a public health goal: A challenge for contemporary health education and communication strategies into the 21st century. Health Promotion International, 15(3), 259–267. doi:10.1093/heapro/15.3.259 Parker, R. M., Baker, D. W., Williams, M. V., & Nurss, J. R. (1995). The test of functional health literacy in adults: A new instrument for measuring patients’ literacy skills. Journal of General Internal Medicine, 10(10), 537–541. doi:10.1007/BF02640361 PMID:8576769 Reeve, C. L., & Basalik, D. (2014). Is health literacy an example of construct proliferation? A conceptual and empirical evaluation of its redundancy with general cognitive ability. Intelligence, 44(1), 93–102. doi:10.1016/j.intell.2014.03.004 Rootman, I. (2003). Literacy and health in Canada: Is it really a problem? Canadian Journal of Public Health, 94(6), 405–406. PMID:14700236 Sarkar, U., Karter, A. J., Liu, J. Y., Adler, N. E., Nguyen, R., Lopez, A., & Schillinger, D. (2011). Social Disparities in Internet patient portal use in Diabetes: Evidence that the digital divide extends beyond access. Journal of the American Medical Informatics Association, 18(3), 318–321. doi:10.1136/ jamia.2010.006015 PMID:21262921 Schulz, P. J., & Nakamoto, K. (2013). Patient behavior and the benefits of artificial intelligence: The perils of “dangerous” literacy and illusory patient empowerment. Patient Education and Counseling, 92(2), 223–228. doi:10.1016/j.pec.2013.05.002 PMID:23743214 Skinner, H. A. (2002). What motivates people to change? In H. A. Skinner (Ed.), Promoting health through organizational change (pp. 113–146). San Francisco, CA: Benjamin Cummings. Smith, J. L., & Haggerty, J. (2003). Literacy in primary care: Is it a problem? Canadian Journal of Public Health, 94(6), 408–412. PMID:14700237 Snowdown, A. (2015). Enhancing patient experience through personalization of health services. Healthcare Management Forum, 28(5), 182–185. doi:10.1177/0840470415588656 PMID:26135292 Tieu, L. (2017). Online patient websites for electronic health record access among vulnerable populations: Portals to nowhere? Journal of the American Medical Informatics Association, 24(e1), e47–e54. doi:10.1093/jamia/ocw098 PMID:27402138

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Veenhof, B., Clermont, Y., & Sciadis, G. (2005). Literacy and digital technologies: Linkages and outcomes. Ottawa, Canada: Statistics Canada. Visiomed Group. (2017). Bewell Connect Products. Products Exhibited at Consumer Electronics Show 2017 (CES 2017), Las Vegas, NV. Wagner, E. H. (1998). Chronic disease management: What will it take to improve care for chronic illness? Effective Clinical Practice, 1(1), 2–4. PMID:10345255 Wodchis, W., Dixon, A., & Anderson, G. (2015). Integrating care to older people and those with complex needs: Examining the lessons from international case studies. International Journal of Integrated Care, 15(1), 1–15.

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World Health Organization. (2017). Chronic Diseases and Health Promotion. Retrieved from: http:// www.who.int/chp/en/ Yamin, C., Emani, S., Williams, D. H., Lipsitz, S. R., Karson, A. S., Wald, J. S., & Bates, D. W. (2011). The digital divide in adoption and use of a personal health record. Archives of Internal Medicine, 171(6), 568–574. doi:10.1001/archinternmed.2011.34 PMID:21444847 Zelmer, J., & Hagens, S. (2014). Understanding the gap between the desire for and use of consumer health solutions. Healthcare Papers, 13(4), 9–21. doi:10.12927/hcpap.2014.23871 PMID:25148119 Zhao, J., Freeman, B., & Li, M. (2016). Can mobile apps influence people’s health behavior change? An evidence review. Journal of Medical Internet Research, 18(11), e287. doi:10.2196/jmir.5692 PMID:27806926

KEY TERMS AND DEFINITIONS

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Chronic Illnesses: Refers to diseases that last for three or more months and cannot be cured with medications or vaccines. They do not typically disappear. Consumer E-Health Interventions: Refers to the utilization of digital tools to engage consumers/ patients to complete an activity or make a change. Cultural Competency: Refers to one’s ability to understand, acknowledge, and display sensitivity to another person’s culture, traditions, or language. Digital Literacy: Refers to one’s ability to effectively utilized technology or technology related devices to accomplish a goal. Health Literacy: Refers to one’s ability to comprehend complex health/medical information presented to them. Linguistic Competency: Refers to one’s ability to comprehend (understand, read, or write) and verbalize a concept or idea in a specified language, for example English or French. Patient Empowerment: Refers to activities undertaken by healthcare providers or organizations to help patients gain confidence in completing an activity or making a change. Patient Engagement: Refers to activities undertaken by healthcare providers or organizations to involve patients in their care. This can also involve providing patients with credible health/medical information.

This research was previously published in Optimizing Health Literacy for Improved Clinical Practices; pages 73-86, copyright year 2018 by Medical Information Science Reference (an imprint of IGI Global).

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15

Chapter 2

Risk Communication for Viral Hepatitis Management Among Migrants Evaristus Adesina Covenant University, Nigeria Olusola Oyero https://orcid.org/0000-0001-7795-5516 Covenant University, Nigeria Nelson Okorie Covenant University, Nigeria Charity Ben-Enukora Covenant University, Nigeria Babatunde Adeyeye Covenant University, Nigeria

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ABSTRACT The burden of viral hepatitis is high with huge mortality and morbidity on human population. The increasing migration of people from areas highly prevalent of viral hepatitis poses a unique threat to the healthcare systems of the host nations. The deficient universal standards for screening, vaccination, and treatment of viral hepatitis have therefore made the burden of chronic liver disease and hepatocellular carcinoma to increase among migrant populations globally. This study examines the role of risk communication in managing viral hepatitis among migrants at the different levels of pre-departure phase, travel phase, destination phase, interception phase and the return phase. The study concluded on the need for concerted effort by national governments to develop a national communication policy with comprehensive risk communication strategies on viral hepatitis management among migrants.

DOI: 10.4018/978-1-6684-2414-8.ch002

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 Risk Communication for Viral Hepatitis Management Among Migrants

INTRODUCTION

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Studies on risk communication have crisscrossed several fields of human endeavours. Its imperativeness is fundamental to managing growing health concerns, especially in an era of globalization. Such concerns have been raised in the context of uncontrolled human migration. This has consequently placed more responsibilities on international aid agencies, governments as well as non-government organisations to providing information on potential associated risks. For centuries hepatitis has been a major global infectious disease affecting mankind (Mauss, Berg, Rockstroh, Sarrazin, Wedemeyer, and Kamps, 2014). The endemic nature of the disease is seen in its categorisations of viral and non-viral hepatitis. Viral hepatitis is a universal infection affecting majorly the liver and causing its inflammation. Viral hepatitis is caused by infection with one of the five known hepatotropic viruses, which are named as hepatitis A virus (HAV), hepatitis B virus (HBV), hepatitis C virus (HCV), hepatitis D virus (HDV), and hepatitis E virus (HEV), respectively (Alter, 2006; El-Serag, 2012; Ly, Xing, Klevens, Jiles, Ward, and Holmberg, 2012; WHO, 2016). While the fears on the link between migration and infectious disease such as tuberculosis, cholera, chickenpox, meningitis, leprosy, human papillomavirus (HPV) influenza (flu) have long been in existence, concerns are beginning to rise and attention given to viral hepatitis (Carballo, Cody, O’Reilly, and Felici, 2010). In a world in which human movement is becoming easier, faster and further than ever before in the history of human race, the role played by migration in the spread of viral hepatitis deserves a special consideration and an urgent call for communication policy and practice aimed at mitigating this deadly pandemic among nations and their people. This is very fundamental as the World Health Organisation has noted that 2 billion people in the world are living with the viral hepatitis disease (WHO, 2017c). In addition, an estimate of 350 – 400 million people are said to be living with the chronic form of the disease globally (WHO, 2016). Among the many factors contributing to the changing epidemiology of viral hepatitis, the movement of people within and between countries is a potentially important one. For instance, globally in the year 2015, there were an estimate of 244 million international migrants (McAuliffe and Ruhs, 2017). A more alarming statistics revealed that there were about 740 million internal migrants (McAuliffe and Ruhs, 2017). In view of the major health risk viral hepatitis poses on migration in whatever form, there is an urgent need to critically examine the role of health communication, especially the aspect of risk communication in managing this this major health challenge. Risk communication is very fundamental to managing infectious diseases and other public health risks. In fact the World Health Organisation has urged member countries to strengthen their efforts in this regard (Turner and Turner, 2008; Vaughan and Tinker, 2009).

Migration and Health in the 21st Century Migration has become a part of the major defining issues of contemporary era. Migration is a concept that cut across a wide range of movements and situations that deals with people of all walks of life and backgrounds (McAuliffe and Ruhs, 2017). According to the global migration indicator report 2018, there were 258 million migrants globally in the year 2017. This represents a 2.4% of the world’s population. Zimmerman, Kiss, and Hossain (2011) have observed that human migration is not in any way new, however it has evolved significantly in line with factors such as health, globalization, climate change, terrorism among others. This has resulted in the rise of migrant networks aiding (Castles, 2000; Gushulak, 16

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 Risk Communication for Viral Hepatitis Management Among Migrants

Weekers, and MacPherson, 2009). Despite new migration schemes, there is no commensurate organized development policy to manage health implications. Influenced by socio-economic background of migrants, the nexus between migration and health is complex. Health history and the extent and quality of the health attention they were exposed to before migrating and situation they had access to prior to moving. Such influence further extends to the incident surrounding migration; the conditions of areas of resettlement; nature of work being performed; housing conditions as well as social services (Wolffers, Verghis, and Marin, 2003). In addition, the level at which they are able to communicate with their families, language proficiency and their familiarity with their host country determines their health and wellbeing (Darj and Lindmark, 2002; McGuire and Georges, 2003)

Epidemiology of Viral Hepatitis Viral hepatitis is a universal infection affecting majorly the liver and causing its inflammation. It is caused by infection with one of the five known hepatotropic viruses, which are named as hepatitis A virus (HAV), hepatitis B virus (HBV), hepatitis C virus (HCV), hepatitis D virus (HDV), and hepatitis E virus (HEV), respectively.

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Hepatitis A Virus Hepatitis A is an inflammatory liver disease caused by contamination with the hepatitis A virus (HAV) (Mauss et al., 2014). Feinstone, Kapikian, and Purcell (1973) described the virus as a single-stranded 27 nm non-enveloped, icosahedral RNA virus, which was first identified by immune electron microscopy in 1973. Latest work has however traced HAV to a rodent origin as a result of large screening for hepatoviruses in more than 200 small mammal species (Drexler, Corman, Lukashev, Van Den Brand, Gmyl, Bruenink, Rasche, Seggewiβ, Feng, and Leijten, 2015) Hepatitis A is an acute viral disease of the liver majorly spread through the faecal-oral means either through person-to-person contact or ingestion of contaminated food or water as well as through blood and bodily secretions (WHO, 2012). The virus is excreted in the stool of an infected person and can be passed from person-to-person or through contaminated food and water. Hepatitis A rarely causes long-term liver damage or death. The hepatitis A virus (HAV) is extremely transmittable and spreads quickly in environmental contexts where there are poor sanitary conditions, poor personal hygiene, or contact with faecal material, such as children and adult diapers. In essence the disease occurs majorly in underdeveloped and developing countries. Furthermore, HAV epidemic have occurred due to foodstuffs contaminated by infected food managers, polluted water, raw or undercooked shellfish gotten from infected waters, contaminated produce, and children infected in day-care context (Dienstag, Szmuness, Stevens, and Purcell, 1978).

HAV Transmission Majorly the Hepatitis A Virus is spread through oral faecal means often by interpersonal contacts or intake of contaminated food or fluid. HAV is characteristically a self-limiting infection and usually causes mild ill health characterized by sudden onset of non-specific signs (Gillcrist, 1999). Mauss et al. (2014) observed that though HAV infection is limited to humans however, experimental HAV infection of pigs has recently been revealed (Song, Park, Park, Kwak, Kim, Lee, Park, Song, Lee, 17

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 Risk Communication for Viral Hepatitis Management Among Migrants

and Seo, 2016). Dienstag et al. (1978) noted that before the appearance of clinical symptoms, basically five day, the virus can be isolated from the faeces of affected person. The HAV according to Mauss et al. (2014) stays detectable in the faeces in the time line of two week. Anal excretion of HAV up to five months after contamination can occur in children (Mauss et al., 2014). In children lesser than six years, HAV usually shows no symptom. In adults, the disease comes with symptoms such as fever, exhaustion, abdominal discomfort, stooling, nausea and jaundice (Golla, Epstein, and Cabay, 2004). Centre for Disease Control in its fact sheet report further identified people who are at greater risk of contracting hepatitis A to include: (a) those who travel to or abode in countries where Hepatitis A is regular (b) people who have sexual contact with someone who has Hepatitis A (c) also men who have sexual encounters with other men (d) those who use energetic drugs, either injected or not (e) people who have clotting-factor challenge, (f) household members or caregivers of an individual infected with Hepatitis A are also liable to contracting the virus(C.D.C, 2015a). The HAV can spread further when: (a) a person infected does not properly wash his/her hands after going to the bathroom and then touches objects or food; (b) a caregiver does not rightly wash his or her hands after changing diapers or cleaning up the excreta of an infected person; (c) or there are sexual activities with an infected person. Figure 1. Possible causes of HAV

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SOURCE: (Mauss et al., 2014)

Hepatitis B Virus Hepatitis B disease is a transmittable liver disease that results from infection with the hepatitis B virus (HBV) (C.D.C, 2016). The HBV is a severe viral disease of the liver spread through mucosal exposure to the blood or body fluids such as semen, vaginal secretions, and saliva of an infected person. One third of the world’s population has serological evidence of past or present infection with HBV (WHO, 2015). Studies have revealed the disease to be more common in developing nations (Kane, 1996; Lavanchy, 18

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 Risk Communication for Viral Hepatitis Management Among Migrants

2005). The prevalence of HBV varies in the tune of 2% in developed countries where the prevalence is low to about 8% in developing countries where infection is widespread with sex, age and socio-economic status as chief risk factors for infection (Odusanya, Alufohai, Meurice, Wellens, Weil, and Ahonkhai, 2005; Erhabor, 2007). Hepatitis B virus incubation time ranges from 6 weeks to 6 months, with an average of 120 days. The HBV which is 100 times more infectious than HIV, occurs in two major ways namely acute and chronic. The Acute hepatitis B refers to the stage when a person is first infected with the virus. This is the time a person is most likely to have symptoms. The short-term infection occurs within the first 6 months after someone is infected with the virus and usually accompanied with symptoms such as nausea, anorexia, fever, malaise, headache, myalgia, right upper quadrant abdominal pain, dark urine, skin rash and jaundice (C.D.C, 2016). WHO (2016) stated that the HBV infection can vary in severity from a mild complaint with little or no symptoms to a severe situation that requires hospitalization. Some people, especially adults, are able to clear, or get rid of, the virus without treatment. Largely about two-thirds of people who have acute HBV infection have a mild illness which often goes undetected (McMahon, Alward, Hall, Heyward, Bender, Francis, and Maynard, 1985). Acute hepatitis B according to WHO (2017c) has no specific cure, hence care is usually aimed at maintaining comfort and adequate nutritional balance, which includes replacement of fluids lost from vomiting and diarrhoea. The chronic hepatitis B virus refers to a seemingly lifetime infection with the Hepatitis B virus. It is made up of persistence hepatitis B surface antigen (HBsAg) for at least 6 months in patients (W.H.O 2017). Persistence of HBsAg is the principal marker of risk for developing chronic liver disease and liver cancer later in life. The probability of a person developing a chronic infection depends on the age of infection (C.D.C, 2016). Up to 90% of infants infected with the Hepatitis B virus according to the Centre for Disease Control will develop a chronic infection while almost 5% of adults will develop chronic Hepatitis B (C.D.C, 2016). Chronic Hepatitis B therefore can lead to serious health challenges, such as liver damage, cirrhosis, liver cancer including death (C.D.C, 2016).

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HBV Transmission There are variations in the transmission modes of hepatitis B virus in different geographic areas (Mauss et al., 2014). In low incidence areas such as Western Europe for instance, the means are primarily unprotected sexual intercourse and intravenous drug use. While in high prevalence locations such as sub-Saharan Africa the major means of transmission is the perinatal infection (vertical), that is from a mother to her baby (Mauss et al., 2014). Horizontal transmission such as family unit, child-to-child transmission by means of minor breaks in the skin is the main transmission route in middle prevalence areas. Simply therefore the routes of hepatitis B virus transmission are through; sexual, percutaneous (intravenous drug use), perinatal, horizontal, transfusion, nosocomial such as needle-stick injury and organ transplantation. C.D.C (2016), further explains that HBV is spread in situations where blood, semen, or other body fluids from an infected person gains access into the body of individual not infected. The virus can be spread from an infected mother to her baby at birth. Worldwide, most people with Hepatitis B were infected with the virus as an infant. The virus is also transmitted through injection drug use, that is sharing needles, syringes, and any other equipment to inject drugs with someone infected with HBV can spread the virus. While uncommon, poor infection control has resulted in outbreaks of Hepatitis B in healthcare settings. 19

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 Risk Communication for Viral Hepatitis Management Among Migrants

Hepatitis C Virus The Hepatitis C Virus is another deadly disease which Pybus, Barnes, Taggart, Lemey, Markov, Rasachak, Syhavong, Phetsouvanah, Sheridan, and Humphreys (2009) described as a parental cause of viral hepatitis. The HCV according to the World Health Organisation is a blood borne disease caused by the hepatitis C virus (WHO, 2017c). The HCV occurs in the two forms of the acute and chronic state with the former just a mild sickness for just few weeks and the latter a critical lifelong sickness. Acute hepatitis C Virus often shows no symptoms and could rarely lead to death of carrier. On the one hand, 15–45% of infected persons are freed from the virus within 6 months of experiencing disease with no treatment (C.D.C, 2016; WHO, 2017c). On the other hand, 55–85% of persons with chronic HCV infection have high risk of liver damage as a result of the replacement of normal liver tissue with the scar tissue (WHO, 2017c).

HCV Transmission Hepatitis C is usually transmitted when blood of HCV carrier gains access into the body of an uninfected person. People have fallen victim of the HCV as a result of needles sharing, syringes, or any other unsterilized sharp equipment used in injecting drugs (C.D.C, 2016). Although not common, sexual transmission of Hepatitis C is likely. Contracting HCV through sex can occur by having sex with multiple partners if infected and engaging in rough sex. Since it is a blood borne disease, hepatitis C can also be transmitted through tattoos and body piercings (C.D.C, 2016) with non-sterile instruments. Although very rare, a baby could contract the virus from an infected mother. Also, approximately 6% of infants born to infected mothers will get HCV (Gillcrist, 1999). Still, most people don’t know how or when they got infected.

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Hepatitis D Virus Hepatitis D Virus (HDV) also known as Hepatitis delta virus was first discovered in Italy by Rizzetto Mario in 1977 when a new antigen was detected while observing patients with chronic Hepatitis B virus (Rizzetto, Gocke, Verme, Shih, Purcell, and Gerin, 1979). Consequently, only patients infected with the Hepatitis B virus are susceptible to having HDV (C.D.C, 2015b; WHO, 2017a). The delta virus replicates on its own, however it requires HBV for its assemblage and secretion hence, patients with HDV are always dually infected with HBV (Hall, 2007). Hepatitis D virus (HDV) infection is believed to account for more harsh effect of the viral hepatitis agent with quick progression to cirrhosis, liver cancer and death compared to HBV (Wedemeyer and Manns, 2010; Sy, Ratsch, Toan, Wollboldt, Bryniok, Nguyen, Van Luong, Velavan, Wedemeyer, and Kremsner, 2013). The disease occurs as either a super-infection of chronic hepatitis B virus infection or simultaneously with acute HBV (Wedemeyer and Manns, 2010; WHO, 2017c)

Hepatitis D Virus Transmission Hepatitis Delta Virus has been observed to have the same transmission mode with HBV. The HDV is a blood borne virus and majorly transmitted through exposure to the blood or blood fluid of an infected person. In industrialized countries, group with high risk tendency include those involved in illicit drug usage and individuals exposed to blood or blood products. HDV is said to be an active sexually transmitted disease as the rate of infection in heterosexual and homosexual people is less significant compared 20

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 Risk Communication for Viral Hepatitis Management Among Migrants

to HBV and HIV (Pascarella and Negro, 2011) The disease according to (WHO, 2017a) also spreads as a result of migration from locations where HDV is endemic.

Hepatitis E Virus Hepatitis E virus (HEV), the contributory agent of hepatitis E disease in humans, is one of the disturbing public health diseases in many parts of the world (Emerson and Purcell, 2003, 2007; Meng, 2010). Hepatitis E is an inflammatory liver infection caused by the hepatitis E virus (HEV). This infection is said to be endemic in many tropical countries with reduced sanitary conditions (Pischke and Wedemeyer, 2013; WHO, 2017b). Furthermore, HEV has been considered to be a travel-related and self-limiting liver infection that only causes fulminant hepatic failure in specific, high-risk groups (Pischke and Wedemeyer, 2013). Yugo and Meng (2013) categorized HEV into four recognized genotypes. The first genotype has been linked to cause large epidemics of acute hepatitis E in humans in Asia. While genotype 2 causes outbreak in humans in Mexico and several African countries, HEV genotype 3 is concentrated in industrialized nations with sporadic, cluster, and chronic cases of hepatitis E in humans. Genotype 3 HEV is also prevalent amongst domestic and wild animals such as mouse, pig and deer. Genotype 4 HEV is also zoonotic and is implicated with infrequent cases of hepatitis E in humans (Meng, 2010, 2013).

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HEV Transmission Mode HEV is transmitted primarily by the faecal-oral means that is drinking or eating contaminated food or water particularly in nations that have poor sanitized sewage and water systems (Debing, Gisa, Dallmeier, Pischke, Bremer, Manns, Wedemeyer, Suneetha, and Neyts, 2014; WHO, 2017b). HEV is usually transmitted via faecal-oral route for instance from animals to humans in infectious body fluids, and from contaminated food or water sources to humans and other animals (Yugo and Meng, 2013; WHO, 2017b). Environmental disaster and yearly flooding are also linked with prominent HEV outbreaks rates principally in places where river, pond, or well water use is prevalent (Bile, Isse, Mohamud, Allebeck, Nilsson, Norder, Mushahwar, and Magnius, 1994; Corwin, Tien, Bounlu, Winarno, Putri, Laras, Larasati, Sukri, Endy, and Sulaiman, 2005). There is no evidence for sexual transmission. Transmission from patient-to-patient has been said to be very rare however, there have been an outbreak of such in Uganda (Teshale, Grytdal, Howard, Barry, Kamili, Drobeniuc, Hill, Okware, Hu, and Holmberg, 2010) as well as from hematology wards in European countries (Wedemeyer, Pischke, and Manns, 2012). Blood borne transmission of hepatitis E virus was first traced in the late nineties (Fainboim, Fassio, Otegui, Eposto, Cahn, Marino, Landeira, Suaya, Gancedo, and Castro, 1999). Recent studies from Hong Kong, Japan, Great Britain and France have however confirmed it (Wedemeyer et al., 2012). WHO (2017b) highlighted means of HEV transmission as eating of undercooked beef derived from infected animals; transfusion of infected blood products; and vertical transmission from a pregnant woman to her foetus.

Non-Viral Hepatitis Non-viral hepatitis, also known as “toxic hepatitis,” is liver inflammation caused by harmful chemicals and other factors that destroy cells in the liver. Although, non-viral hepatitis shares many of the same

21

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 Risk Communication for Viral Hepatitis Management Among Migrants

symptoms of viral hepatitis, however non-viral hepatitis is not contagious. There are three major classifications of non-viral hepatitis namely; toxic, alcoholic and autoimmune (Wilbur, 2009). Figure 2. Sources of HEV Source: (Mauss et al., 2014)

Alcoholic Hepatitis Alcoholic hepatitis is a proven diagnosis featured by the fast growth of jaundice and liver malfunction most frequently due to excessive and long-term alcohol intake (Naveau, Giraud, Borotto, Aubert, Capron, and Chaput, 1997; McCullough and O’Connor, 1998; Lucey, Mathurin, and Morgan, 2009). Alcohol induced toxicity is one of the common causes of morbidity (WHO, 2014) and a major cause of liver sickness worldwide (Lucey et al., 2009). Although the quantity of alcohol consumption that places an individual at danger of having alcoholic hepatitis has not been determined scientifically (Torok, 2015), Niederau (2010) noted however that women are at a higher danger of having alcoholic hepatitis than men in a situation that the duo gender consume the same quantity. Every organ and system in the human body is at a risk of being damaged by alcohol with most considerable effects on circulatory, nervous, and hepato-gastroenterological body system (Testino, 2013; Testino, Burra, Bonino, Piani, Sumberaz, Peressutti, Castiglione, Patussi, Fanucchi, and Ancarani, 2014).

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Autoimmune Hepatitis Although described as a rare and heterogeneous infection, the autoimmune hepatitis is a major cause of liver morbidity and mortality (Corrigan, Hirschfield, Oo, and Adams, 2015). Autoimmune hepatitis is a disease in which the immune system of the body fights the liver cells. The disease according to Than and Oo (2015) was first described by Waldenström in 1950 when he discovered a chronic hepatitis in young woman which eventually led to liver cirrhosis. Manns and Strassburg (2001); Strassburg and Manns (2006); Strassburg (2015) noted that though Autoimmune hepatitis (AIH) frequently affects individuals older than 40 years, however, it must be considered a disease in all age groups

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 Risk Communication for Viral Hepatitis Management Among Migrants

The United States Department of Health and Human Services described the seriousness of the disease by its chronic nature that is it can last for many years thereby causing the liver to be hardened. The clinical appearance varies from nonappearance of symptoms to a severe presentation (Stravitz, Lefkowitch, Fontana, Gershwin, Leung, Sterling, Manns, Norman, and Lee, 2011). The AIH disease has the following symptoms: an enlarged liver, jaundice, itching, skin rashes, joint pain, abdominal discomfort, abnormal blood vessels on the skin, nausea, vomiting, loss of appetite, dark urine, pale or gray-coloured stools.

Toxic Non-Viral Hepatitis Toxic non-viral hepatitis is an inflammation of the liver caused by chemicals. Many chemicals that are intentionally or unintentionally inhaled or consumed can have toxic effects on the liver. Among these chemicals are drugs, industrial solvents and pollutants. Virtually every drug imaginable has at one time or another been indicated as a cause of toxic hepatitis. Viral hepatitis disease is therefore one of the public health issues in Nigeria, which require adequate risk communication because people tend to attribute the disease cause to spiritual problem due to inadequate knowledge of the disease.

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Global Burden of Viral Hepatitis Among Migrants Studies have revealed a poor knowledge, attitude and practice of the management of viral hepatitis in many populations (Schenkel, Radun, Bremer, Bocter, and Hamouda, 2008; Frambo, Atashili, Fon, and Ndumbe, 2014; Adekanle, Ndububa, Olowookere, Ijarotimi, and Ijadunola, 2015), this tend to be lower even among migrant population. This could be as a result of factors including poor knowledge of the diseases, their risk factors and symptoms, inaccessibility to efficient healthcare cum health information, as well as the lack of symptoms from the early stages (Taylor, Jackson, Pineda, Pham, Fischer, and Yasui, 2000; Strong, Hur, Kim, Pan, Tran, and Juon, 2015). Estimates from Sydney shows a low knowledge and high infection rate among Vietnamese men (O’Connor, Shaw, Wen, and Quine, 2008). Currently there are is no aggregate data on the prevalence of viral hepatitis among migrants residing in the United States of America (Sharma, Carballo, Feld, and Janssen, 2015). Surveys however conducted among 4300 Asian immigrant population to New York revealed that 13% positive rate (Pollack, Kwon, Wang, Wyatt, and Trinh-Shevrin, 2014). A similar study carried out among Somali immigrants residing in Minnesota showed that the HBV prevalence rate was high (Shire, Sandhu, Kaiya, Oseini, Yang, Chaiteerakij, Mettler, Giama, Roberts, and Therneau, 2012). Viral hepatitis disease is therefore one of the public health issues in Nigeria, which require adequate risk communication because people tend to attribute the disease cause to spiritual problem due to inadequate knowledge of the disease.

Risk Communication and Viral Hepatitis Management Risk communication could be engaged in diverse areas including disaster and environmental hazards but risk communication in the context of this paper deals with public health issues. At first risk communication was regarded as a one-way form of communication from experts to the general public, the repudiation of this conception by the subsequent recognition of risk communica23

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 Risk Communication for Viral Hepatitis Management Among Migrants

tion as an interactive process lead to the recent definitions of the concept. Accordingly, Covello (1992) defines risk communication as ‘‘the exchange of information among interested parties about the nature, magnitude, significance, or control of a risk’’ (p. 359). Glik (2007) describes risk communication as an exchange of information about the health risks caused by environmental, industrial, or agricultural processes, policies, or products among individuals, groups and institutions. Perko (2012) also defines risk communication as an interactive exchange of information and opinions concerning risks and risk management by stakeholders, using different means of mass communication. From these definitions, it could be deduced that risk communication involves two-way interactive communication process with groups such as experts (risk assessors and managers), vulnerable populations, the general public and others through various media of communication. Risk communicators engage the mass media, interpersonal communication, social marketing or the integrated method in attempts to achieve proper interaction. Recognizing the central role of risk communication in managing public health outbreaks and emergencies, the WHO has highlighted 5 key practices such as trust building, early announcement, transparency, regarding public concern, as well as advance planning. Establishing trust among the migrant population is very critical therefore in managing an endemic disease of viral hepatitis. This is essential to allow such people regard the health messages. Furthermore, to avoid a void in communication such as speculations and misinformation between the risk communication experts and the migrants, there is a need for early announcement. The mass media for instance play key role in risk communication. The mass media are often utilised as primary sources of information about health risks (Meyer, Rossman & Brosius, 2015; WHO, 2017). They are often employed to create awareness and promote basic knowledge about health issues that threaten human existence especially infectious disease as well as influencing attitudes and promoting the adoption of protective health behaviours (Catalán-Matamoros, 2011). Mass media health risk messages seek to induce behavioural change by presenting a health risk and describing the expected behaviour that may alleviate the threat. Therefore, recurrent exposure to mass media messages regarding the risk factors and modes of transmission of diseases as well as preventive measures tend to affect how people perceive diseases. However, some scholars have argued that overexposure could have a consequential effect where an individual becomes overconfident and begin to assume that he has more control over the risk factors (Catalán-Matamoros, 2011). Another medium of risk communication is through interpersonal communication. The importance of interpersonal communication in risk communication stems from the fact that it is practically interactive. In recognition to the significance of health risk communication through interpersonal communication process, Funk, Gilad, Watkins, and Jansen (2009) opine that awareness of an infection through word of mouth have the propensity to lower the incidence of that disease. Interpersonal communication through town-hall meetings and public enlightenment events are significant means of risk communication especially among rural populations. Besides, health workers most often engage themselves in interaction with patients regarding various disease epidemiology and management options through interpersonal communication thereby giving the patients the opportunity to understand how to manage their health properly. The integrated concept of risk communication is a holistic approach of utilising a combination of two or more media of communication to disseminate health risk information to stakeholders. Authors like Bishwajit, José, Junior, Sarker and Sandeep (2016) claim that the integrated concept of health risk 24

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 Risk Communication for Viral Hepatitis Management Among Migrants

communication has been proved to produce the best result since it eliminates inequalities in audience exposure to health risk communication. Irrespective of the medium of communication, Health risk communication basically encompasses the dissemination of information that informs the public about the root causes of diseases, the supposed threats, the level of attention it merits and the preventive measures that are required to be taken (Rodríguez, 2017). These messages tend to present a threat/s to good health and describe a behaviour or behavioural change that may alleviate the threat. Therefore, the major objective of risk communication is to provide the public with meaningful, relevant, accurate information regarding a health risk in order to advance knowledge and promote improved collective and individual decision making. Hence, risk communication is based on the assumption of the public’s right to know about health risks. Then information provided facilitates informed decision making regarding the health risk. Unless properly communicated, health risk communication could engender distorted risk perceptions which in turn can lead to confused behaviour with unforeseeable consequences (Mantovani, Crovato, Pinto, Mascarello, Cortelazzo, and Ravarotto, 2017). Effective risk communication is, therefore, perceived as a crucial factor for the prevention and cooperative management of health risks (Barry, Sixsmith, and Infanti, 2013), in order words, effective risk communication is, essential for limiting morbidity and mortality caused by communicable diseases, and its social and economic effects. Thus, for risk communications to generate the required result, its contents must trigger attention, stimulate comprehension and be able to influence decision-making (Meyer, Rossman & Brosius, 2015). To enhance appropriate comprehension of risk messages, therefore, the choice of words, coherency of message, as well as adaptations to various language and dialectical groups by means of translations risk messages to local languages and dialects should be considered. Furthermore, designing risk communication messages on viral hepatitis are very critical in any migrant population. Risk messages should be made up of practical schedules for migrants to reduce their risk. Such message should be communicated in clear, succinct language, with a great reverence for the audience’s concerns In regard to migrants who travel to viral hepatitis endemic areas, risk communication could be provided to persuade them to go for a complete dose of vaccination in addition to adopt and maintain healthy lifestyles to protect themselves from infection. The endemic nature of viral hepatitis requires a strategic approach of management, especially communicating the risk among migrant population who are at high risk of contracting. A two way and multi-dialogic approach communications and engagement with the migrant population is needed to raise awareness; encourage protective behaviour; inform to build up knowledge on hazards and risks; adopt positive attitudinal and behavioural practices. Effective risk communication must be applied in the phases of migratory process as identified by Zimmerman et al. (2011) to include the pre-departure phase, travel phase, destination phase, interception phase, return phase. The pre-departure stage is made up of the period before individuals leave their place of origin. This is the most appropriate time to utilize risk communication; especially the use of interpersonal networks to provide detailed to would-be migrants on the need to get tested against viral hepatitis and the importance of getting vaccinated. Such risk information should be provided in relations to the health risk of desired destination. Travel phase: this relates with transition moment between individuals’ origin place and destination or rather an interception spot. As noted by Zimmerman et al. (2011), this stage may include several transit locations. Risk communication initiatives have to be established to addressing issues surrounding 25

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 Risk Communication for Viral Hepatitis Management Among Migrants

viral hepatitis. The destination phase is when individuals settle either temporarily or long-term in their intended location. Interception phase is usually experienced by a minority especially those at-risk portion of the migrating population. This phase is described by conditions of short-term. The return phase is when migrants return to their place of origin, temporarily or to resettle indefinitely or permanently.

CONCLUSION Viral hepatitis has been established to be a growing public health challenge worldwide causing high morbidity and mortality. Although the majority of the burden is in developing countries, however the high rate of migration caused by globalization issues requires an urgent risk communication strategy to be adopted by developed nations alike. In essence there is a need to incorporate risk communication techniques in the planning and management of national viral hepatitis prevention, diagnosis as well as treatment. Risk communication can be used by host nations to advocate migrants getting tested and vaccinated against the viral hepatitis.

REFERENCES Adekanle, O., Ndububa, D. A., Olowookere, S. A., Ijarotimi, O., & Ijadunola, K. T. (2015). Knowledge of hepatitis B virus infection, immunization with hepatitis B vaccine, risk perception, and challenges to control hepatitis among hospital workers in a Nigerian Tertiary Hospital. Hepatitis Research and Treatment, 2015, 1–6. doi:10.1155/2015/439867 PMID:25685549 Adesina, E., Odiboh, O., Oyero, O., Adeyeye, B., Yartey, D., & Ekanem, T. (2018). Publishing African communication researches in open access outlets: An interrogation of Scopus between 1996-2016 Paper presented at the 31st IBIMA Conference, Milan, Italy. Academic Press. Adesina, Okorie, N., Oyero, O., Adeyeye, B., and Oyesomi, K. (2017). Media reportage and audience perception of hepatitis disease in Nigeria. Global Journal of Health Science, 9(10), 68. doi:10.5539/ gjhs.v9n10p68 Adeyeye, B., Amodu, L., Odiboh, O., Okorie, N., Adesina, E., Yartey, D., & Ekanem, T. (2019). Data on new media use for agricultural training and research at Agricultural Services and Training Centre (ASTC). Data in Brief, 22, 181–184. doi:10.1016/j.dib.2018.11.031 PMID:30581923

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Alter, M. J. (2006). Epidemiology of viral hepatitis and HIV co-infection. Journal of Hepatology, 44, S6–S9. doi:10.1016/j.jhep.2005.11.004 PMID:16352363 Barry, M. M., Sixsmith, J., & Infanti, J. J. (2013). A literature review on effective risk communication for the prevention and control of communicable diseases in Europe. ECDC. Bile, K., Isse, A., Mohamud, O., Allebeck, P., Nilsson, L., Norder, H., ... Magnius, L. O. (1994). Contrasting roles of rivers and wells as sources of drinking water on attack and fatality rates in a hepatitis E epidemic in Somalia. The American Journal of Tropical Medicine and Hygiene, 51(4), 466–474. doi:10.4269/ajtmh.1994.51.466 PMID:7943574

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Carballo, M., Cody, R., O’Reilly, E., & Felici, A. (2010). Migration, hepatitis B and hepatitis C. International Centre for Migration Health and Development. Castles, S. (2000). International migration at the beginning of the twenty‐first century: Global trends and issues. International Social Science Journal, 52(165), 269–281. doi:10.1111/1468-2451.00258 Catalán-Matamoros, D. (2011). The role of mass media communication in public health Health Management-Different Approaches and Solutions. IntechOpen. C.D.C. (2015a). Centre for Disease Control Fact sheet: Hepatitis A C.D.C. (2015b). Hepatitis D virus. C.D.C. (2016). Centre for Disease Control Fact sheet: Hepatitis B Corrigan, M., Hirschfield, G. M., Oo, Y. H., & Adams, D. H. (2015). Autoimmune hepatitis: An approach to disease understanding and management. British Medical Bulletin, 114(1), 181–191. doi:10.1093/bmb/ ldv021 PMID:25995334 Corwin, A. L., Tien, N. T., Bounlu, K., Winarno, J., Putri, M. P., Laras, K., ... Sulaiman, H. (2005). The unique riverine ecology of hepatitis E virus transmission in Southeast Asia. Liver International, 93(3), 255–260. Covello, V. T. (1992). Risk communication: An emerging area of health communication research. Annals of the International Communication Association, 15(1), 359–373. doi:10.1080/23808985.1992.11678816 Darj, E., & Lindmark, G. (2002). Not all women use maternal health services. Language barriers and fear of the examination are common. Lakartidningen, 99(1-2), 41–44. PMID:11871169 Debing, Y., Gisa, A., Dallmeier, K., Pischke, S., Bremer, B., Manns, M., . . . Neyts, J. (2014). A mutation in the hepatitis E virus RNA polymerase promotes its replication and associates with ribavirin treatment failure in organ transplant recipients. Gastroenterology, 147(5), 1008-1011. Dienstag, J. L., Szmuness, W., Stevens, C. E., & Purcell, R. H. (1978). Hepatitis A virus infection: New insights from seroepidemiologic studies. The Journal of Infectious Diseases, 137(3), 328–340. doi:10.1093/infdis/137.3.328 PMID:204711

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Drexler, J. F., Corman, V. M., Lukashev, A. N., Van Den Brand, J. M., Gmyl, A. P., Bruenink, S., ... Leijten, L. M. (2015). Evolutionary origins of hepatitis A virus in small mammals. Proceedings of the National Academy of Sciences of the United States of America, 112(49), 15190–15195. doi:10.1073/ pnas.1516992112 PMID:26575627 El-Serag, H. B. (2012). Epidemiology of viral hepatitis and hepatocellular carcinoma. Gastroenterology, 142(6), 1264-1273. Emerson, S. U., & Purcell, R. H. (2003). Hepatitis E virus. Reviews in Medical Virology, 13(3), 145–154. doi:10.1002/rmv.384 PMID:12740830 Emerson, S. U., & Purcell, R. H. (2007). Hepatitis E. The Pediatric Infectious Disease Journal, 26(12), 1147–1148. doi:10.1097/INF.0b013e31815dd7c2 PMID:18043454

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Erhabor, A. (2007). Sero-prevalence of Hepatitis in Children in a tertiary health institution in the Niger Delta of Nigeria. Nigerian Journal of Medicine, 16(3), 250–251. PMID:17937164 Evaristus, A., Olusola, O., Nelson, O., Oladokun, O., & Lanre, A., & Babatunde, A. (2018). Health management strategies for hepatitis care practices: An interplay of communication structures and social marketing theory. Paper presented at the 32nd IBIMA Conference, Ville, Spain. Academic Press. Fainboim, H., Fassio, E., Otegui, L., Eposto, M., Cahn, P., Marino, R., ... Castro, R. (1999). Prevalence of hepatitis viruses in an anti‐human immunodeficiency virus‐positive population from Argentina. A multicentre study. Journal of Viral Hepatitis, 6(1), 53–57. doi:10.1046/j.1365-2893.1999.t01-1-6120135.x PMID:10847130 Feinstone, S. M., Kapikian, A. Z., & Purcell, R. H. (1973). Hepatitis A: Detection by immune electron microscopy of a virus-like antigen associated with acute illness. Science, 182(4116), 1026–1028. doi:10.1126cience.182.4116.1026 PMID:4356028 Frambo, A. A. B., Atashili, J., Fon, P. N., & Ndumbe, P. M. (2014). Prevalence of HBsAg and knowledge about hepatitis B in pregnancy in the Buea Health District, Cameroon: A cross-sectional study. BMC Research Notes, 7(1), 394. doi:10.1186/1756-0500-7-394 PMID:24965844 Funk, S., Gilad, E., Watkins, C., & Jansen, V. A. (2009). The spread of awareness and its impact on epidemic outbreaks. Proceedings of the National Academy of Sciences of the United States of America, 106(16), 6872–6877. doi:10.1073/pnas.0810762106 PMID:19332788 Gillcrist, J. A. (1999). Hepatitis viruses A, B, C, D, E and G: Implications for dental personnel. The Journal of the American Dental Association, 130(4), 509–520. doi:10.14219/jada.archive.1999.0245 PMID:10203901 Glik, D. C. (2007). Risk communication for public health emergencies. Annual Review of Public Health, 28(1), 33–54. doi:10.1146/annurev.publhealth.28.021406.144123 PMID:17222081 Golla, K., Epstein, J. B., & Cabay, R. J. (2004). Liver disease: Current perspectives on medical and dental management. Oral Surgery, Oral Medicine, Oral Pathology and Oral Radiology, 98(5), 516–521. doi:10.1016/j.tripleo.2004.09.011 PMID:15529121

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Gushulak, B. D., Weekers, J., & MacPherson, D. W. (2009). Migrants and emerging public health issues in a globalized world: Threats, risks and challenges, an evidence-based framework. Emerging Health Threats Journal, 2(1), 7091. doi:10.3402/ehtj.v2i0.7091 PMID:22460280 Hall, G. F. (2007). Hepatitis A, B, C, D, E, G: An update. Ethnicity & Disease, 17(2), S2–S40. PMID:17684813 Usaini, S., Okorie, N., Bamgboye, O., Amodu, L., Afolabi, F., & Evaristus, A. (2018). Internet, social media and computer-mediated relationship among engineering undergraduate students. International Journal of Civil Engineering and Technology, 9(13), 1651–1657. Kane, M. A. (1996). Global status of hepatitis B immunisation. Lancet, 348(9029), 696–705. doi:10.1016/ S0140-6736(05)65598-5 PMID:8806283

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Lavanchy, D. (2005). Worldwide epidemiology of HBV infection, disease burden, and vaccine prevention. Journal of Clinical Virology, 34, S1–S3. doi:10.1016/S1386-6532(05)00384-7 PMID:16461208 Lucey, M. R., Mathurin, P., & Morgan, T. R. (2009). Alcoholic hepatitis. The New England Journal of Medicine, 360(26), 2758–2769. doi:10.1056/NEJMra0805786 PMID:19553649 Ly, K. N., Xing, J., Klevens, R. M., Jiles, R. B., Ward, J. W., & Holmberg, S. D. (2012). The increasing burden of mortality from viral hepatitis in the United States between 1999 and 2007. Annals of Internal Medicine, 156(4), 271–278. doi:10.7326/0003-4819-156-4-201202210-00004 PMID:22351712 Manns, M. P., & Strassburg, C. P. (2001). Autoimmune hepatitis: Clinical challenges. Gastroenterology, 120(6), 1502–1517. doi:10.1053/gast.2001.24227 PMID:11313321 Mantovani, C., Crovato, S., Pinto, A., Mascarello, G., Cortelazzo, M., & Ravarotto, L. (2017). Risk communication by health professionals: An analysis of press releases drafted by Italian veterinarians. Veterinaria Italiana, 53(3), 185–195. PMID:29152701 Mauss, S., Berg, T., Rockstroh, J., Sarrazin, C., Wedemeyer, H., and Kamps, B. S. (2014). Hepatology-A clinical textbook: flying publisher. McAuliffe, M., and Ruhs, M. (2017). World Migration Report 2018. IOM, The UN migration agency. McCullough, A. J., & O’Connor, J. B. (1998). Alcoholic liver disease: Proposed recommendations for the American College of Gastroenterology. The American Journal of Gastroenterology, 93(11), 2022–2036. doi:10.1111/j.1572-0241.1998.00587.x PMID:9820369 McGuire, S. Sr, & Georges, J. (2003). Undocumentedness and liminality as health variables. Advances in Nursing Science, 26(3), 185–195. doi:10.1097/00012272-200307000-00004 PMID:12945654 McMahon, B. J., Alward, W. L., Hall, D. B., Heyward, W. L., Bender, T. R., Francis, D. P., & Maynard, J. E. (1985). Acute hepatitis B virus infection: Relation of age to the clinical expression of disease and subsequent development of the carrier state. The Journal of Infectious Diseases, 151(4), 599–603. doi:10.1093/infdis/151.4.599 PMID:3973412 Meng, J. (2010). Hepatitis E virus: Animal reservoirs and zoonotic risk. Veterinary Microbiology, 140(3), 256–265. doi:10.1016/j.vetmic.2009.03.017 PMID:19361937

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Meng, J. (2013). Zoonotic and foodborne transmission of hepatitis E virus. Paper presented at the Seminars in liver disease. Academic Press. 10.1055-0033-1338113 Naveau, S., Giraud, V., Borotto, E., Aubert, A., Capron, F., & Chaput, J. (1997). Excess weight risk factor for alcoholic liver disease. Hepatology (Baltimore, Md.), 25(1), 108–111. doi:10.1002/hep.510250120 PMID:8985274 Niederau, C. (2010). Alcoholic hepatitis (2nd ed.). Dusseldorf: Flying Publisher. O’Connor, C. C., Shaw, M., Wen, L. M., & Quine, S. (2008). Low knowledge and high infection rates of hepatitis in Vietnamese men in Sydney. Sexual Health, 5(3), 299–302. doi:10.1071/SH07084 PMID:18771647

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Odusanya, O., Alufohai, F., Meurice, F., Wellens, R., Weil, J., & Ahonkhai, V. (2005). Prevalence of hepatitis B surface antigen in vaccinated children and controls in rural Nigeria. International Journal of Infectious Diseases, 9(3), 139–143. doi:10.1016/j.ijid.2004.06.009 PMID:15840454 Okorie, N., Amodu, L., Jegede, A., Adesina, E., & Martins, O. (2019). Global Media, Digital Journalism and the Question of Terrorism: An Empirical Inquest on ISIS. Media Watch, 10(2), 212–224. Okorie, N., & Bigala, P. (2016). Creating HIV/AIDS Awareness through Localized Communication for Health Development in South Africa. Journal of Health Management, 18(3), 439–446. doi:10.1177/0972063416651567 Okorie, N., Kehinde, O., Oyero, O., Wiliams, O. R., & Soola, E. O. (2014). Effective use of information sources for breast cancer care: Interplay of mass media and interpersonal channels. Journal of African Research in Business & Technology, 3(1), 1–12. Okorie, N., Loto, G., & Omojola, O. (2018). Blogging, civic engagement, and coverage of political conflict in Nigeria: A study of nairaland. com. Kasetsart Journal of Social Sciences, 39(2), 291–298. doi:10.1016/j.kjss.2018.05.007 Okorie, N., & Namtira, B.-J. (2017). Measuring Media Campaigns Effectiveness for Environmental Health for Sustainable Development: A Study of Ebola Outbreak in Lagos State, Nigeria. Journal of Health Management, 19(4), 553–562. doi:10.1177/0972063417727619 Okorie, N., & Salawu, A. (2016). Effective use of media awareness campaigns for breast cancer care among women: A comparative study. Journal of International Women’s Studies, 17(4), 160. Okorie, N., & Salawu, A. (2017). Can my wife be virtual-adulterous? An experiential study on Facebook, emotional infidelity and self-disclosure. Journal of International Women’s Studies, 18(2), 166–179. Omojola, O., Amodu, L., Okorie, N., Imhonopi, D., Yartey, D., & Adesina, E. (2018). Assessing the One-Lecture-One-Test Learning Model in Undergraduate Journalism Program Using Cohort Design. The Journal of Social Sciences Research, 4(12), 591–597. Pascarella, S., & Negro, F. (2011). Hepatitis D virus: An update. Liver International, 31(1), 7–21. doi:10.1111/j.1478-3231.2010.02320.x PMID:20880077 Pischke, S., & Wedemeyer, H. (2013). Hepatitis E virus infection: Multiple faces of an underestimated problem. Journal of Hepatology, 58(5), 1045–1046. doi:10.1016/j.jhep.2012.12.013 PMID:23266489

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Pollack, H. J., Kwon, S. C., Wang, S. H., Wyatt, L. C., and Trinh-Shevrin, C. (2014). Chronic hepatitis B and liver cancer risks among Asian immigrants in New York City. AACR. Pybus, O. G., Barnes, E., Taggart, R., Lemey, P., Markov, P. V., Rasachak, B., ... Humphreys, I. S. (2009). Genetic history of hepatitis C virus in East Asia. Journal of Virology, 83(2), 1071–1082. doi:10.1128/ JVI.01501-08 PMID:18971279 Rizzetto, M., Gocke, D., Verme, G., Shih, J.-K., Purcell, R., & Gerin, J. (1979). Incidence and significance of antibodies to delta antigen in hepatitis B virus infection. Lancet, 314(8150), 986–990. doi:10.1016/ S0140-6736(79)92561-3 PMID:91776

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Schenkel, K., Radun, D., Bremer, V., Bocter, N., & Hamouda, O. (2008). Viral hepatitis in Germany: Poor vaccination coverage and little knowledge about transmission in target groups. BMC Public Health, 8(1), 132. doi:10.1186/1471-2458-8-132 PMID:18433490 Sharma, S., Carballo, M., Feld, J. J., & Janssen, H. L. (2015). Immigration and viral hepatitis. Journal of Hepatology, 63(2), 515–522. doi:10.1016/j.jhep.2015.04.026 PMID:25962882 Shire, A. M., Sandhu, D. S., Kaiya, J. K., Oseini, A. M., Yang, J. D., Chaiteerakij, R., . . . Therneau, T. M. (2012). Viral hepatitis among Somali immigrants in Minnesota: association of hepatitis C with hepatocellular carcinoma. Paper presented at the Mayo Clinic Proceedings. Academic Press. 10.1016/j. mayocp.2011.08.001 Song, Y. J., Park, W. J., Park, B. J., Kwak, S. W., Kim, Y. H., Lee, J. B., ... Seo, K. H. (2016). Experimental evidence of hepatitis A virus infection in pigs. Journal of Medical Virology, 88(4), 631–638. doi:10.1002/jmv.24386 PMID:26381440 Strassburg, C. P. (2015). Autoimmune Liver Diseases: AIH, PBC and PSC (5th ed.). Germany: Flying Publisher. Strassburg, C. P., & Manns, M. P. (2006). Autoimmune hepatitis in the elderly: What is the difference? Journal of Hepatology, 45(4), 480–482. doi:10.1016/j.jhep.2006.07.008 PMID:16901573 Stravitz, R. T., Lefkowitch, J. H., Fontana, R. J., Gershwin, M. E., Leung, P. S., Sterling, R. K., ... Lee, W. M. (2011). Autoimmune acute liver failure: Proposed clinical and histological criteria. Hepatology (Baltimore, Md.), 53(2), 517–526. doi:10.1002/hep.24080 PMID:21274872 Strong, C., Hur, K., Kim, F., Pan, J., Tran, S., & Juon, H.-S. (2015). Sociodemographic characteristics, knowledge and prevalence of viral hepatitis infection among Vietnamese Americans at community screenings. Journal of Immigrant and Minority Health, 17(1), 298–301. doi:10.100710903-014-0015-x PMID:24715472 Sy, B. T., Ratsch, B. A., Toan, N. L., Wollboldt, C., Bryniok, A., Nguyen, H. M., ... Kremsner, P. G. (2013). High prevalence and significance of hepatitis D virus infection among treatment-naive HBsAgpositive patients in Northern Vietnam. PLoS One, 8(10), e78094. doi:10.1371/journal.pone.0078094 PMID:24205106

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Taylor, V. M., Jackson, J. C., Pineda, M., Pham, P., Fischer, M., & Yasui, Y. (2000). Hepatitis B knowledge among Vietnamese immigrants: Implications for prevention of hepatocellular carcinoma. Journal of Cancer Education, 15(1), 51–55. PMID:10730805 Teshale, E. H., Grytdal, S. P., Howard, C., Barry, V., Kamili, S., Drobeniuc, J., ... Holmberg, S. D. (2010). Evidence of person-to-person transmission of hepatitis E virus during a large outbreak in Northern Uganda. Clinical Infectious Diseases, 50(7), 1006–1010. doi:10.1086/651077 PMID:20178415 Testino, G. (2013). Alcoholic hepatitis. Journal of medicine and life, 6(2), 161-167. Testino, G., Burra, P., Bonino, F., Piani, F., Sumberaz, A., Peressutti, R., ... & De Cerce, G. (2014). Acute alcoholic hepatitis, end stage alcoholic liver disease and liver transplantation: an Italian position statement. World Journal of Gastroenterology: WJG, 20(40), 14642.

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Than, N. N., & Oo, Y. H. (2015). A concise review of autoimmune liver diseases. In AutoimmunityPathogenesis, Clinical Aspects and Therapy of Specific Autoimmune Diseases. InTech. Torok, N. J. (2015). Update on alcoholic hepatitis. Biomolecules, 5(4), 2978–2986. doi:10.3390/ biom5042978 PMID:26540078 Turner, M. M., & Turner, S. S. (2008). Risk communication. Handbook of Science and Technology for Homeland Security (pp. 1-11). Wiley. Vaughan, E., & Tinker, T. (2009). Effective health risk communication about pandemic influenza for vulnerable populations. American Journal of Public Health, 99(S2), S324–S332. doi:10.2105/ AJPH.2009.162537 PMID:19797744 Wedemeyer, H., & Manns, M. P. (2010). Epidemiology, pathogenesis and management of hepatitis D: Update and challenges ahead. Nature Reviews. Gastroenterology & Hepatology, 7(1), 31–40. doi:10.1038/ nrgastro.2009.205 PMID:20051970 Wedemeyer, H., Pischke, S., and Manns, M. P. (2012). Pathogenesis and treatment of hepatitis E virus infection. Gastroenterology, 142(6), 1388-1397. WHO. (2012). Prevention and control of viral hepatitis infection: framework for global action. 2012. Geneva: World Health Organization. WHO. (2014). Global status report on alcohol and health, 2014. World Health Organization. WHO. (2015). World Health Organization Hepatitis B Fact Sheet. WHO. (2016). Global health sector strategy on viral hepatitis 2016-2021. Towards ending viral hepatitis. WHO. (2017a). Hepatitis D Fact sheet. WHO. (2017b). Hepatitis E fact sheet. WHO. (2017c). Global Hepatitis Report, 2017. Wilbur, K. (2009). Nonviral hepatitis. Journal of Pharmacy Practice, 22(4), 388–404. doi:10.1177/0897190008328694

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Wolffers, I., Verghis, S., & Marin, M. (2003). Migration, human rights, and health. Lancet, 362(9400), 2019–2020. doi:10.1016/S0140-6736(03)15026-X PMID:14686372 Yugo, D. M., & Meng, X.-J. (2013). Hepatitis E virus: Foodborne, waterborne and zoonotic transmission. International Journal of Environmental Research and Public Health, 10(10), 4507–4533. doi:10.3390/ ijerph10104507 PMID:24071919 Zimmerman, C., Kiss, L., & Hossain, M. (2011). Migration and health: A framework for 21st century policy-making. PLoS Medicine, 8(5), e1001034. doi:10.1371/journal.pmed.1001034 PMID:21629681

This research was previously published in the Handbook of Research on the Global Impact of Media on Migration Issues; pages 235-252, copyright year 2020 by Information Science Reference (an imprint of IGI Global).

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33

Chapter 3

Indigenous Language Media and Communication for Health Purposes in the Digital Age Toyosi Olugbenga Samson Owolabi Lagos State University, Nigeria Nahimah Ajikanle Nurudeen Lagos State University, Nigeria

ABSTRACT All over the world, the issues of health and ill health have generated heightened attention among health professionals and communication experts. This is expected in view of the prevalence of increasingly lifethreatening ailments. It is therefore not surprising that matters bordering on health have been elevated to the front burner of policy and decision making both at the national and multinational levels. This chapter, therefore, observes that the reason most health information doesn’t get to the intended audiences and produce the desired effect is because they are not communicated in the most intelligible language to the people. Indigenous language media are potential channels through which health information could reach the grassroots where more than 70 percent of the nation’s populations are resident. It also perceived that health communication could be made to produce more effect in this digital era as more citizen journalists could be raised to communicate in the indigenous language.

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INTRODUCTION Globally, the issues of health and ill-health have generated heightened attention among health professionals and communication experts. This is expected in view of the prevalence of increasingly life-threatening ailments. Diseases such as cancer, hepatitis, liver cirrhosis, Ebola and other infectious diseases among others have been discovered to defy curative measures. It is therefore not surprising that matters bordering on health have been elevated to the front burner of policy and decision making both at the national and multinational levels. This is based on the recognition that it is only a healthy mind that could participate DOI: 10.4018/978-1-6684-2414-8.ch003

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 Indigenous Language Media and Communication for Health Purposes in the Digital Age

in and contribute to the nation’s developmental growth. Moreover, it has been observed that most of these diseases are avoidable if effective precautionary measures are taken. In spite of the dissemination of health information to the people to warn them against those risk factors that can predispose them to these diseases, many casualties are still being recorded. Recent research shows that properly designed behaviour-based health communication activities can have a significant positive impact in altering negative health-related attitudes, beliefs and behaviours if communicated through the right channel. This chapter, therefore, observes that the reason why most health information doesn’t get to and produce the desired effect on the intended audiences is because they are not communicated in the most intelligible language to the people (Owolabi, Ezika, Lewitt, and Beth, 2016). Indigenous language media, including newspapers, radio and television as well as other social media platforms are potential channels through which health information could reach the grassroots where more than 70 percent of the nation’s populations are resident. This is because, according to Salawu (2006, p.88), “every language reflects the culture of the people thus, it is logical that people would express themselves and their cultures better in their native language”. Language is a unique human endowment, which defines human’s humanity, that is, it makes man species specific (Amuseghan, 2010). It is used as an instrument of communication in all spheres of life. The home language of an indigenous group of people is known as indigenous language, it is the language that carries a people’s knowledge, culture and identity. An indigenous language is a language that is native to a region and spoken by indigenous people. This language is from a linguistically distinct community that originated in the area. It is regarded as a local means of communication between members of a community because it contains within it the essence of considerable information, knowledge and wisdom of the people. An indigenous language is the language spoken within an ethnic community where the language is part of their identity and some traits of their customs are preserved through it. An indigenous language can also be a native to a country and can serve as a mother tongue to some of its indigenes. According to Oyesomi and Salawu (2019), Indigenous language is a language that is spoken by a group of people that resides in a locality or region. It is therefore not surprising that there has been significant growth in the volume of information being disseminated through the indigenous languages across the print and broadcast spectrum as most media owners acknowledge the need to be relevant to local audiences (Olaoye, 2013). Indigenous language media, according to Wilson and Stewart (2008) is therefore, the forms of media expression that are conceptualized, produced and/or created by indigenous people and is used as vehicles for communication, cultural preservation, cultural and artistic expression, political self-determination, and cultural sovereignty. Indigenous communication includes the transmission of entertainment, news, persuasion, announcements, and social exchanges of every type (Mundy and Lloyd-Laney, 1992). Oyesomi, Salawu and Ọlorunyomi (2017) opine that indigenous communication enjoys high credibility because it is familiar and controlled locally. Indigenous communication has value in its own right. While contributing to the indigenous language media discourse, Olukotun (2006) also adds that indigenous language media in Nigeria include the indigenous language service of the federal, state and emerging private electronic and print media. According to Jowitt (1987) cited by Oso (2006), about 44 Nigerian languages were used by radio and television services for daily news broadcast. However, Bolarin (2013) observed that with the deregulation of broadcast media by the Federal government in 1992, the number may be more as more private investors and governments at the Federal and states have developed interest in the sub-sector; apparently because of its potential use in reaching the grassroots with their policies and programmes. Although the 34

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 Indigenous Language Media and Communication for Health Purposes in the Digital Age

number of electronic media may be increasing in Nigeria however, Oso (2006) notes that this may be far from truth about the print media. The reason, according to him is because print media demand some level of literacy ability and standard orthography which are both lacking among the over 250 languages in Nigeria (Omu, 2008). It is therefore not surprising that despite that the first newspaper to be published in Nigeria was in Yoruba, an indigenous language of the south-west; English language has become the prime language of the press in the country. English language assumed this enviable position because it appeals to advertisers. The electronic media are aware of this twist and this explains why series of programmes that could attract more listeners and viewers are introduced. For example, koko inu iwe iroyin, (a newspaper review) and lori papa, (sport commentary) are two of such programmes which are believed to have wide audience going by the manner in which advertisers scramble to air their advertisements during the programme (Popoola, 2006). Communication in general is today supported by ICTs, and the lack of terminology in African languages establishes and entrenches the digital divide, making it nearly impossible for them to compete with English language. Websites in African languages tend to be lean and most people who are literate enough to browse in African languages may find it more economical to do so in a European language (English or French) (Olúbòdé-Sàwè, 2010). Most African countries are multilingual societies and explicit choices have to be made among alternative language varieties about which language variety fulfills which role. This role differentiation involves language planning which can only be defined by the government and its agencies as well as language groups to influence the behaviour of users with respect to the acquisition, structure or functional allocation of their language codes (Cooper 1989, cited in UNESCO, 2005, p.5). Indigenous language media overlap with, and are on the same spectrum with other types of minorityproduced media, and quite often, they share a kinship regarding many philosophical and political motivations (Wilson et al., 2017). While the study of indigenous peoples has traditionally been in the domain of anthropology, indigenous language media are now a significant focus of interdisciplinary study (including media and communication, ethnic studies, cultural studies, art history, geography, development studies and political communication). However, there has not been much focus on the potentials of indigenous language media use for health communication. Media campaigns in indigenous languages offer opportunities to educate and inform large populations by using traditional media, such as television, radio and newspapers. Over time, a lot of health-related messages are being propagated but with marginal benefit to Nigerians especially the rural populace. This is because the information apart from not tailored to Nigeria, the messages are not disseminated in the languages that are intelligible to the people. According to Ransom-Kuti (2009), it is impossible to appropriately communicate health messages to largely rural communities as we have in Nigeria without engaging indigenous language media. Speaking further, he said many attempts in the media by medical experts to communicate health messages have ended as worthless efforts because they are pitched above the level of the grassroots audience. Researches have equally shown that the use of a selection of mass media channels communicating in the indigenous language is more likely to result in an effective health campaign (Corcoran, 2010). Another dimension to the observed lopsidedness in information sharing process is that, in the digital space, available materials on the internet are only in the languages of the developed nations. The use of digital technology by the media to promote health issues is a growing field despite the obvious gaps in the rural and urban information consumption. The communication media such as radio, television, newspapers, and magazines are the most conspicuous channels of transmitting appropriate information 35

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 Indigenous Language Media and Communication for Health Purposes in the Digital Age

to a large number of people. The evolution of the information superhighway offered by the internet also provides a greater access to both the senders and receivers of information in the 21st century. One of the distinct advantages of the mass media connectivity to the internet is the engagement of the audience. This is unlike the traditional mass media where the audience only acts as passive receiver of messages. This method of accessing health information enables the receivers to be actively engaged in information seeking and processing (Corcoran 2010).Notwithstanding the potential of the digital technologies, most people especially in the rural communities are still being denied access to information. The reason is that most of the English language media are known for their urban-centred bias and their contemptuous neglect of the rural communities (Olukotun, 2006, p.132). As new technologies are evolving and the information gathering and processing are going digital, more and more information lopsidedness are created between the urban and rural areas. This, according to Korp (2006, p.82), is true to the extent that those who are well educated and well off are greater beneficiaries of digital technology. Thus, income and education are strong factors within the notion of ‘digital divide’. According to Olukotun (2006), matters are made worse by the fact that most newspapers and broadcasting organisations have no reporters covering the rural communities. Although the media have been credited to play a vital role in Nigeria’s democratic journey since it gained independence on October 1, 1960, not much has been achieved in the area of health information delivery. It is important to note that there have been arguments about narrowing the rural-urban information gap, which are relevant to health improvement project. This perhaps explains why there is a call for creating alternative media where local languages will be used along with English in satisfying the information needs of the rural populace. It is against this background that this chapter will, among others place health communication and indigenous language media in perspective, look at the centrality of indigenous language in health communication process, examine the issues and trends in communicating health messages to rural populace in the digital era. Lastly, the concluding part will identify some limitations that may constitute a drag in the wheel of effective health communication using indigenous language channels and the way forward.

THEORETICAL FOUNDATION

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This study is anchored on the Development Media theory. This theory is believed to possess the variables by which this study can be exhaustively discussed. Development Media Theory: This theory was propounded by Dennis McQuail in (2010). According to Folarin (2002) cited in Anaeto et al (2008, p. 64), the theory emerged to fill the apparently existing gap between the developed and developing countries. The theory makes an assumption that “the media should accept and carry out positive development tasks in line with nationally established policy without prejudice to their traditional functions of information, education and entertainment of the public”. Development media theory further states that “the freedom of the media should be opened to economic priorities and development needs of the society”. These assumptions gave a clear mandate to the mass media in general and the indigenous language media in particular. In this study, the indigenous language media have a role to play in communicating health-related messages to the grassroots with the purpose of enhancing the development profile of the nation thus, bridging the gap between the developed and developing economy of the world. If the media have actually accepted to carry out positive development tasks as claimed by Olise (2008), it therefore 36

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 Indigenous Language Media and Communication for Health Purposes in the Digital Age

goes to show that the media as a significant part of the society are free to imbibe the Information and Communication Technologies (ICTs) skills available in this digital era to communicate messages that can positively influence attitude and behavior change to health risks. The relevance of this theory to the study is that it provides insight into the socio-economic implication of ill-health on the nation if not addressed through effective communication especially, to the grassroots that constitute the larger majority of national population.

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Health Communication and Indigenous Language Media in Perspective Over the years, there has been an established linkage between the domains of communication and health. Health communication represents the interface between communication and health and is recognized as an important factor for improving both personal and public health. Health communication contributes to all aspects of disease prevention and health promotion. Communication refers to the transmission or exchange of information and implies the sharing of meaning among those who are communicating. According to Healthy People (2010) guidelines, health communication encompasses the study and use of communication strategies to inform and influence individual and community decisions with the purpose of enhancing health and wellbeing. Mass media as communication channels have become increasingly more influential in stimulating health campaigns that can effectively inform the citizens; inspires idea and feelings, stimulate discussions and assist in creating public awareness. Furthermore, it has been observed that there is rapid improvement in health message delivery in this digital era. Digital technology such as CD-ROM and the World Wide Web, which can target audiences with customized messages and engage people in interactive session have become common experience (Baran, 2004). Availability of relevant health-enhancing messages to the right people at the right time is no doubt the key to promoting healthy living and contributing to all aspect of disease prevention. Despite the globalised characteristic and popularity of English language media in many countries, it has been observed that the mass-mediated messages in English usually do not get to the grassroots especially in a country like Nigeria where there are multiplicity of ethnic groups and languages competing alongside English (Owolabi 2014). For example, the print media is elitist in culture and content and will not make as much impact among the illiterate rural dwellers that constitute about 57% of the populations unless they are printed in the indigenous language (Owolabi, 2014). The same is what obtains in the broadcast media where more than 70% of their programmes are transmitted in English (Owolabi and O’Neil, 2014). Media scholars have therefore understood the necessity of using both national and all the minority indigenous languages to disseminate health and development messages in the media (Amuseghan, Ayenigbara and Orimogunje. 2010). English is both the national and official language of Nigeria with wider acceptance among the citizens. However, in spite of its popularity, it is still limited in its ability to carry health messages to the rural communities where a larger majority is believed to be poor and uneducated to correctly decode the information. This is the basis of Adedeji’s (2015) observation that since indigenous languages fare better in the broadcast media than in the print media that give preference to English language, both can be used as the language of the media. Communication as a mean of expressing feelings, worthwhile inter-personal relationship, and conformity to societal norms, convenience, security, innovation and change implies its pivotal role to human existence (Aristole, 1987). It is the avenue through which members of a society are informed Indigenous 37

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 Indigenous Language Media and Communication for Health Purposes in the Digital Age

language media have therefore transformed itself into potential instrument for communicating social change and innovation. More importantly, communication has now become advanced and applicable in various fields of human endeavour such as environmental maintenance, public administration, civic responsibilities, social change and innovation as well as public health and hygiene. There has been an encouraging growth in audiences for radio and television broadcast. Statistics has shown that the number of television sets in developing countries has increased from 13 million in 1955 to 707 million in 1995. Broadcast on these channels has continually provided a powerful leveler for behavioural change with a reasonable and affordable cost-benefit (Piotrow et al., 1997) cited in Amuseghan (2008b).Through communication efforts, the people can have access to information that will deepen their knowledge about new innovations and other development laden incidence around them. Apart from fostering healthy and secured quality of life it also enables the people to avoid habits that may constitute health risk in the society (Amuseghan et al (2010). In Nigeria as in other parts of the world, health communication has now attained the position of not only steering the wheel but also the pivot on which the wheel of public health programmes rotate. This is in view of the prevalence of increasingly life-threatening ailments in the society. Diseases such as cancer, hepatitis, liver cirrhosis, Ebola and other infectious diseases among others have been discovered to defy curative measures. However, most of these diseases are avoidable if effective precautionary measures are taken. In spite of the dissemination of health information to the people to warn them against those risk factors that can predispose them to these diseases, many casualties are still being recorded. Recent researches show that properly designed behaviour-based health communication activities can have a significant positive impact in altering negative health-related attitudes, beliefs and behaviours if communicated through the right channel hence, the urgent need to develop indigenous language media.

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Centrality of Indigenous Language in Communicating Health Messages It has been established in the earlier part of this chapter that indigenous language is central to achieving health communication objectives. Communicating development messages with the people in their mother tongue brings about effective understanding of the complexity of a particular disease or health situation. For instance, the media played a crucial role in stemming Ebola Virus Disease (EVD) outbreak in Nigeria. People desperately needed information on how to prevent and treat EVD (Musa et al, 2016). However, at the onset of the outbreak, the reportage in electronic and print media fueled a lot of fear as contracting EVD was considered a death sentence. Stigmatization and misinformation among members of the public were widespread at the start of the plague. In one instance, misinformation prompted some people to drink salty water to prevent EVD as a result of which many people died in the process. Early and intensive dissemination of appropriate messages to the public on EVD immediately the outbreak was declared, using a wide range of media would have prevented such a situation. Subsequently, publicity was intensified through the media, providing continuous and coordinated information about the disease, including its mode of spread, preventive measures and actions being undertaken to stop the disease. An interview was conducted with Lucy Osuizogbo-Okechukwu, a Senior Correspondent with News Agency of Nigeria in which she opines that “using indigenous languages is what many stakeholders in the health and development sectors have been advocating”. While expatiating further on the role of indigenous media in disseminating health-related messages, she said, “when we look at various diseases index in the country, they are prevalent in the rural areas and this is because most rural dwellers are 38

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 Indigenous Language Media and Communication for Health Purposes in the Digital Age

probably illiterates who are ignorant of the problem associated with diseases control and health communications generally”. Oftentimes, the intervention programmes are done in English language, which is unintelligible to them. So, if health campaigns messages are to get to the grassroots people, it has to be communicated in the language they understand. She believed that if health promotional messages are packaged in indigenous languages, diseases such as infant and maternal mortality rate will reduce. It will be easier for them to key in properly into immunization and other intervention programmes by the time they understand well. Also, Chioma Obinna, assistant health editor with Vanguard newspaper, said it will be a good development if indigenous media can have dedicated columns or programmes on health because the local people depend on these media as sources of daily information. She also emphasized the need to consider target audience of each health campaigns so as to explore best language option(s) in achieving the objectives of such programmes. While talking about the success rate of past health intervention programmes, Obinna confirmed that some health programmes in past failed because of the adoption of top-down model of communication which pays attention to the message at the expense of the intended audience. She said, “using indigenous languages would make it bottom -up approach where the people can align with the messages and get themselves well equipped with the right and useful information to protect themselves or seek help from the right channel”. According to Salawu (2004), the indigenous media (prints and broadcast) possess an incredible power to better interpret development messages thus, placing the facts and issues in better perspective. While lending his voice to the recurring debate on the role of indigenous language in communicating health information to diverse audience, Ojebode (2004, p.90-91) identifies twelve major formats for disseminating health information to the grassroots. These include: straight news, editorials, news analysis, features, group discussion, lecture or straight talk, interviews, testimonial, entertainment, jingles, poetry and music.

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Communicating Health Messages in Indigenous Language Media: Issues and Trends in the Digital age As internet access continues to expand, it has continued to serve as a rich health information resource in the environments that lack health expertise. Regardless of location, the internet technology allows people to gain access to a wide array of health-related information globally at a mouse click. The local cyber café may even begin to serve as a health information hub. Since the internet transcends geographical barriers, there is plenty of potential for websites to provide a valuable source of health information, thus enhancing health and wellbeing of people in developing countries. However, as the amount of information grows at an unprecedented rate, so does the amount of falsehood and potentially harmful information. Misinformation, either due to inaccuracy or misinterpretation of health information, have been found to cause terrible consequences by instigating mass panics among the ignorant citizens while it can also mislead uninformed policy-makers. The local and international media have played a vital role as the link between health workers and the general public. Health authorities educate and entrust the media with essential health information, which is then relayed to the public in readily accessible formats through a variety of media channels. Most of the public health interventions through the media do not sufficiently engage the local people as well as translating to improved positive attitudinal and behavioral changes because they were not carried out using indigenous language media platform. 39

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 Indigenous Language Media and Communication for Health Purposes in the Digital Age

A 2002 study by Momodu which examines rural Nigerian communities’ health information needs and their information seeking behavior identified radio, television, newspapers, health extension workers and health agents as Information sources in rural communities. This research further indicated that rural communities look for information to handle the incidence of epidemic outbreaks, to identify the best treatment options, to get good health facilities and to implore the government to support them in their health problems. Women in particular were found to be interested in seeking information on pre- and post-natal care and on immunization facilities for their children and themselves. Momodu’s study serves as an attestation to the importance of local languages to disseminating health messages. While a considerable number of local newspapers, television and radio stations have specialized health programmes for public education on various health matters, there is none that currently has health programmes in any of the local languages. Findings from a study conducted in Ghana by Aryee (2014) shows a considerable use of mobile phones for disseminating and seeking health information in rural communities of Ghana. The study further shows that health-related activities performed on and with mobile phones include: (i) inquiring about health concerns from friends, family, or healthcare personnel (ii) practicing tele-consultation, and tele-health with health help lines that address specific health issues such as pregnancy and cholera outbreak; (iii) clarifying any health symptom before travelling to healthcare centres (iv) scrutinizing counterfeit medications entering the country (Aryee (2014, p.123). However, the effectiveness of this media for disseminating and accessing health information is influenced by the interplay of a number of individual factors including a person‘s age, gender, level of education, individual innovativeness (National Research Council, 2011), the community‘s cultural practices (Van Biljon & Kotzé, 2008), and the nature of information content sought (Chetley, Davies, Trude, McConnell, Ramirez, Shields, et al. 2006) cited in (Sokey et al 2018). These factors, in the view of Van Biljon & Kotzé (2008) are referred to as social constructs which they defined as a change in an individual‘s thoughts, feelings, attitudes, or behaviours that results from interaction with another individual or a group. This influence includes: cultural practices and interests of an individual, such as beliefs about using for example, mobile phones to get important information about health as a mode of promoting a healthy lifestyle (Gerber et al., 2009). There are 100 of mobile applications available across Android, iOS and other platforms but, access to modern communication technologies and medical assistance is a problem for the majority of people living in developing countries, particularly in rural communities (Cashen et al. 2004). This, for instance is because majority of the people in need of medical assistance are not so literate enough to operate and access medical services via these technologies. Majority of the mobile health applications are programmed in English which makes them restricted to only educated elites. Another limitation in this regard is the fact of the issues of digital divide as access to modern internet facilities of infrastructure such broadband is still very poor in most of the developing countries like Nigeria because investments in this area has been concentrated mainly in the city centres. Additionally, the social media have proved to be a veritable tool for information dissemination to the public on health and diseases. For example, Facebook and tweeter provides platforms for giving feedback on questions and comments from the public, addressing misinformation and monitoring community alerts among others. However, the challenge in all these options provided by social media or digital platforms is still language restrictions because most feed posts from digital handles are in English.

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 Indigenous Language Media and Communication for Health Purposes in the Digital Age

Indigenous Language Media as Health Information Channel: Some Limitations There has been considerable amount of documentation regarding general barriers to adoption and implementation of health information technology. Rice, Royce, and Thompson (2016) identified illiteracy and language barriers as obstacles to health information dissemination which is a pointer to the need for health communication in domestic language or local dialect. There is also paucity of literature on the part of the limitations in the indigenous language media as health information medium. Nevertheless, there is the issue of public acceptability as general limitation to indigenous language media. One of the arguments against the use and development of African indigenous languages as languages of the media is the multiplicity of languages; African is said to have 2000 languages, 400 of which are found in Nigeria alone, (Salawu 2006).

Barriers to Effective Health Communication

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Good communication is believed to be the cornerstone of an effective healthcare delivery system; the absence of which the entire process suffers serious failure. It has been observed that about 80 percent of serious medical errors are traceable to miscommunication by the healthcare providers while about 1,744 deaths were also believed to be the consequence of the same problem within the last five years (CRICO Comparative Benchmarking System, 2016). Low Health Literacy: Because health information is normally relayed in the form of written communication, the illiterate/semi-illiterate often cannot access the information. Thus, health literature should be customised for each target audience and written in a style appropriate to their level of comprehension. At the same time, health literacy programs should train low-literacy individuals to avail themselves of these health resources. ◦◦ Limited Internet Access: The Internet has become the channel of choice for information delivery worldwide. However, in certain communities, even in the developed world, internet access is still too costly, and in some cases, out-rightly unavailable. Moreover, though there is abundant health information on the internet, it is still out of reach of those in resource-poor settings. Given the importance of the internet in disseminating vital health information, there should be increased effort to bring access to rural communities and the developing world. In particular, this effort should involve both the public and private sectors, namely the government agencies and technology corporations, ◦◦ Lack of Research Activity in Developing Countries: Research and evaluation are required in order to design, develop and implement effective health communication interventions. Unfortunately, most research is done with an eye to solving health problems in the developed world, while pressing health problems in the developing world are often neglected. Even if research is done in developing countries, it seldom comes to the attention of health professionals. “Few reports of health research from developing countries are published in journals indexed by Western services such as Medline. Western indexing services cover some 3000 journals of which 98% are from the developed world. For instance, the whole of Latin America accounted for 0.39% of the total number of articles referenced by Medline in 1996, down from a “high” of 2.03% in 1966. Because 41

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 Indigenous Language Media and Communication for Health Purposes in the Digital Age

only a small number of journals from developing countries are indexed by Medline, research from these countries is almost invisible.” •

•

Proliferation of Low Quality Healthcare Information on the Internet: As the volume of Internet content increases on a daily basis, consumers need help evaluating the reliability of the information that they are bombarded with. According to the Office of Disease Prevention and Health Promotion, “people are using the internet to look up information, purchase medications, consult remotely with providers, and maintain their personal health records”. Approximately 70 million persons in the United States use the internet for health-related reasons, and the potential for harm from inaccurate information, inferior quality goods, and inappropriate services is t rife. In order to protect consumers, internet health resources and health-related Web sites should be required to adhere to a strict code of conduct. Site owners should disclose their identity and essential contact information clearly and honestly. They should explicitly state the purpose of their site and provide proper citation for the content they display. They should inform their users how personal information is used, and whether the content is periodically updated to prevent misinformation. Inability of Health Workers to Communicate With Patients: Due to various communication hurdles such as language barriers, socio-cultural differences among others, health workers sometimes have difficulty in transmitting vital health information to their patients. Moreover, given the shortage of human resources, which is a common problem in developing countries, health workers often deal with multiple patients at a time, making communication even more difficult (Weller, Boyd and Cumin, 2014, p.151-152)

Strategies to Improve on Health Communication in Indigenous Language Media

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Effective health communication is essential because it equips the public with the tools and knowledge to respond appropriately to health crises such as flu outbreaks, HIV/AIDS, malaria etc. High impact health communication catalyzes behavioral changes on a societal level; it galvanizes entire communities into action, prompting them to live a healthy lifestyle by taking the necessary measures to prevent disease and to protect, maintain and improve their own health, such as good nutrition, regular exercise, responsible sexual behavior, eschewing negative behaviors such as cigarette smoking, drug abuse etc. In order for a health communication program to have an impact, it should disseminate appropriate health content that satisfies the following criteria, as prescribed by the Office of Disease Prevention and Health Promotion (2016, p.21): • •

•

Accuracy: The content is valid and without errors of fact, interpretation, or judgment. Availability: The content (whether targeted message or other information) must be delivered or placed where the audience can easily access it. Placement varies according to the audience, message complexity, and purpose, ranging from interpersonal and social networks to billboards and mass transit signs to prime-time TV or radio, to public kiosks (print or electronic), to the Internet. Balance: Where appropriate, the content presents the benefits and risks of potential actions or recognizes different and valid perspectives on the issue.

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 Indigenous Language Media and Communication for Health Purposes in the Digital Age

• • • • • •

Consistency: The content remains internally consistent over time and also is consistent with information from other sources (the latter is a problem when other widely available content is not accurate or reliable). Cultural Competence: The design, implementation, and evaluation process that accounts must be taken into consideration especially, for special issues for select population groups (ethnic, racial, and linguistic) and also educational levels and physically challenged. Evidence-Based: Relevant scientific evidence must undergo comprehensive review and rigorous analysis to formulate practice guidelines, performance measures, review criteria, and technology assessments for tele-health applications. Reach: The content must be available to the largest possible number of people in the target population. Reliability: The source of the content is credible, and the content itself is kept current. Repetition: The delivery of/access to the content is continued or repeated over time, both to reinforce the impact with a given audience and to reach new generations.

Moreover, any effective health communication strategy must take a multi-pronged approach coupling with other interventions, such as policy changes, improvements and in health delivery systems. If a health communication initiative does not have support at the policy level, its efficacy and impact are much less predictable than if it has institutional backing. In developing health communication initiatives, it is crucial to consider socio-cultural milieu of the target audiences with respect to their cultural characteristics, language preferences and media habits. For instance, the health communication program developer does not want to design a health education website, only to find out later that his target audience is mainly comprised of individuals who are either technologically illiterate, or simply do not have access to the digital technology. General strategies that governmental bodies can take to enhance the quality of health communication at the macro level: • •

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•

Government agencies and technology corporations should collaborate together to bring internet access into more households. For the benefit of people with marginal literacy skills, pertinent health information should be written at their level of comprehension. Health literacy programs targeting their skill improvement should be organized. Set up training centers that equip health communication professionals and health professionals with good communication skills.

At the micro level (within organizations and communities), this study makes the following recommendations: Workplace guides: During a disease outbreak, employers have a responsibility for employee productivity and health. The distribution of workplace guides to contain the spread of communicable disease is an important health communication strategy. These guides contain information on how to develop workplace preparedness plans, as well as prevention and support programs in a systematic manner. In addition, workplace-wide lectures, as well as providing peer educators could further enhance health communication.

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 Indigenous Language Media and Communication for Health Purposes in the Digital Age

Community Skits: In a community setting, it is useful to organize short dramas that portray the attitudes of the local people towards their health. By understanding local attitudes, health workers can plan interventions targeting specific behavioral changes. Theatre is also a strategic way to draw children’s attention to health problems. In addition to the above, a wide range of tools and publications have been developed by various agencies such as the Center for Global Health Communication and Marketing to provide health communication training to healthcare workers.

CONCLUSION In this study, the traditional media of communication have been observed to be incapable of carrying health information messages to the grassroots. The print media are known to be elitist in content as most of them are usually published in English language for the English speaking audience who are fewer in number in most rural communities in Nigeria. The same reason is why the radio and television are not making much impact in the rural areas. Most of their programmes, about 70 percent are aired in English to the disadvantage of the indigenous language speakers. Most of the public health interventionist programmes through the media do not sufficiently engage the local people as well as translating to their improved positive attitudinal and behavioral changes because they were not carried out using indigenous language media platform. It has therefore been discovered that indigenous language media, including newspapers, radio and television as well as other information and communication technologies are believed to be potential channels through which the inadequacies and the information lopsidedness could be remedied. We discovered in this study that any effective health communication strategy must take a multipronged approach by using different indigenous language channels of communication. These become necessary to effectively remove ignorance and influence the populace in taking informed decision that will enhance their sound health and total wellbeing. The study also found that, apart from other factors such as low literacy level, limited internet access, lack or insignificant level of health research and low quality healthcare information on the Internet among developing countries, the inability of health workers and planners to communicate with the grassroots in indigenous language constitutes the greatest hindrance to effective transmission of vital health information especially to the rural populace.

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RECOMMENDATION On the basis of the above findings, we hereby recommend the following proven strategies for government to enhance the quality of health communication at the macro level: •

The National Broadcasting Commission should intensify efforts in its oversight functions to ensure that the broadcast media to comply with the stated rule that programmes should be aired on ratio 40:60 between indigenous languages and English

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 Indigenous Language Media and Communication for Health Purposes in the Digital Age

• • •

Government agencies and technology corporations should collaborate together to make internet access into more households easier and affordable so that the grassroots people could have unlimited access to development information on the internet. For the benefits of people with marginal literacy skills, the health planners and workers at the various levels of government should be conscious of their peculiarity and their levels of comprehension when generating health information intended for them. For those without any literacy skill at all, the government should also be mindful of their distinctiveness and therefore rely heavily on indigenous language media channels to disseminate health information to them. As a matter of fact, training centers that equip health communication professionals and health professionals with good communication skills in indigenous languages could also be established for one-to-one contact with them.

FUTURE RESEARCH DIRECTIONS Future research efforts should be geared towards the impact of indigenous language media roles in strategic communication as a step towards achieving the ongoing sustainable development goals especially among developing nations.

REFERENCES Adedeji, O. A. (2015). Analysis of Use of English And Indigenous Languages By The Press in Selected African Countries. [OMAN Chapter]. Arabian Journal of Business and Management Review, 4(8), 35–45. Amuseghan, S. A. (2003). Prepositions in Nigerian Standard English Usage: A Study in the Domains of Science and Technology. (Doctoral Thesis), Adekunle Ajasin University, Nigeria. Amuseghan, S. A. (2008a). ‘Language, communication and information flow in entrepreneurship’, in African Journal of Business and Management, 2(10), 201–208. Amuseghan, S. A. (2008b). Language Policy Provisions and Curriculum Issues and Challenges in Nigeria. A paper presented at the 53rd Annual Conference of International Linguistic Association held at Sunny College at Old Westbury, NY.

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Amuseghan, S. A., Ayenigbara, G. O., & Orimogunje, T. (2010). Language and health Communication strategies towards effective public health communication programmes in Nigeria. Journal Media and Communication Studies 2(5), pp. 111-117, May 2010. Available at http://www.academicjournals.org/jmcs Anaeto, S. G., Onabajo, S. O., & Osifeso, J. B. (2008). Models and Theories of Communication. Maryland: African Renaissance Books Incorporated. Aristotle.. (1987). Poetics (S. Hal, Trans.). Aristotle. Poetics. (1987). Translated Stephen Hallowell. Chapel Hill, NC: University of North Carolina Press.

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Baran, S. (2014). Introduction to Mass Communication: Media Literacy and Culture (8th ed.). Boston, MA: McGraw-Hill. Benson, O., Victor, A., Linda, I., & Ariole, I. A. (2017). “Promoting Indigenous Language in Nigeria: Issues and Challenges for the Library and Information Professionals” Library Philosophy and Practice (e-journal). 1472. Retrieved from http://digitalcommons.unl.edu/libphilprac/1472 Bolarin, O. L. (2013). Language of Communication in the Nigerian Media. Singaporean Journal of Business Economics and Management Studies, 1(11). Brieger, W. (1990). Mass media and health communication in rural Nigeria. Health Policy and Planning, 5(1), 77–81. doi:10.1093/heapol/5.1.77 Cashen, M. S., Dykes, P., & Gerber, B. (2004). E-health technology and Internet Resources. Barrier for Vulnerable Population. The Journal of Cardiovascular Nursing, 19(3), 209–214. doi:10.1097/00005082200405000-00010 PMID:15191264 Collins, O. F., Banda, Z. M., & Albert, N. D. (2016). The impact of a Community driven Mass Media Campaign on the Utilization of maternal health care services in rural Malawi. Retrieved from https:// www.ncbi.nlm.nih.gov/pmc/articles/PMC4730729/ Corcoran, N. (2010). Mass Media in Health Communication. In N. Corcoran (Ed.), Communicating Health Strategies for Health Promotion (pp. 73–93). London, UK: SAGE. CRICO. (2016) A Report of Medical Malpractice Claims from the CRICO Comparative Benchmarking System. Retrieved from https://www.vital-learning.com › blog › barriers-healthcaren communication Crystal, D. (1987). The Cambridge Encyclopedia of Linguistics. New York: Oxford University SPress. Gerber, A. S., Karlan, D., & Bergan, D. (2009). Does the Media Matter? A Field Experiment Measuring the Effect of Newspapers on Voting Behavior and Political Opinions. American Economic Journal. Applied Economics, 1(2), 35–52. doi:10.1257/app.1.2.35 Interview with Chioma Obinna, assistant health editor with Vanguard newspaper. Interview with Lucy Osuizogbo-Okechukwu, a Senior Correspondent with News Agency of Nigeria.

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John, S. (2016). The Use of Indigenous Media of Communication for Health Communication in Olamabaro Local Government Area of Kogi State Nigeria. Retrieved from https://www.academia.edu/33078422/ The_Use_of_Indigenous_Media_of_Communication_for_Health_Commu Korp, P. (2006). Health in the Internet: Implication for Health Promotion. Health Education Research, 21(1), 78–86. doi:10.1093/her/cyh043 PMID:15994845 McQuail, D. (2010). McQuail’s Mass Communication Theory (6th ed.). London, UK: Sage. Momodu, M. O. (2002). Information needs and information seeking behaviour of rural dwellers in Nigeria: A case study of Ekpoma in Esan West local government area of Edo State, Nigeria. Library Review, 51(8), 406–410. doi:10.1108/00242530210443145

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Mundy, P., & Lloyd-Laney, M. (1992). Indigenous communication. Appropriate Technology, 19(2), IT Publications Ltd, 103-105 Southampton Row, London, UK. Musa, E., Nasidi, A., Shuaib, F., Nguku, P. M., & Vaz, R. G. (2016). Nigeria’s Ebola Outbreak Response: Lessons for Future Epidemic Preparedness. Arch Med, 8(6). doi:10.21767/1989-5216.1000171 National Research Council. (2011). The US Health Disadvantage Relative to Other High-Income Countries Findings from a National Research Council/Institute of Medicine Report. Ojebode, A. (2004). Radio as Development Communication Medium: Types, Formats, Roles and Limitation. In E. O. Soola (Ed.), Communicating for Development Purposes (pp. 87–99). Ibadan: Kraft Books Limited. Olaoye, A. A. (2013).The Role of Indigenous Languages in National Development: A Case Study of Nigerian Linguistic Situation. International Journal of Applied Linguistics and English Studies, 2(3). Available at http://www.journals.aiac.org.au/index.php/IJALEL/article/view/847 Assessed on 20/3/2019 Olise, F. P. (2008). Communication for Development and Modern ICTs: Nigeria at Cross Roads. In E. M. Mojaye, O. O. Oyewo, R. M’Bayo, & I. A. Sobowale (Eds.), Health Communication, Gender Violence, and ICTs in Nigeria; Ibadan: Ibadan University Press, pp. 269-283. Olúbòdé-Sàwè, F. O. (2010). Digital Communication in Indigenous Languages Federal University of Technology, Nigeria. DOI: doi:10.4018/978-1-61520-773-2.ch036 Olukotun, A. (2006). The Indigenous Language Press and Democratic Mobilisation in Nigeria: A Historical Structural Overview. In A. Salawu (Ed.), Indigenous Language Media in Africa, Lagos: Center for Black and African Arts and Civilisation (CBAAC), pp. 126-140. Omu, F. I. A. (2008). “Ethnicity, Nationalism, and Federalism in Nigeria: An Interactive Trinity of Relationship” in F. I. A. Omu, & G. E. Oboh (Eds.), Mass Media in Nigerian Democracy. Ibadan: StirlingHordens Publishers (Nig) Ltd. Oso, L. (2006). A Political Economy of Indigenous language press in Nigeria. In A. Salawu (Ed.), Indigenous Language Media in Africa. Lagos: Centre for Black and African Arts and Civilisation (CBAAC) pp. 175-195.

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Owolabi, T. O. S. (2014). Media Coverage of SMEs in Nigeria: An Imperative for National Development, (Doctoral thesis), University of Strathclyde, Glasgow, UK. Owolabi, T. O. S., Ezika, E. A., Lewitt, M., & Beth, C. (2016). Communication Media and Cardiovascular Health Promotion as Factors for Sustainable Development in Nigeria, Journal of Sustainable Development in Africa. Clarion University of Pennsylvania, 18(1), 156–172. Owolabi, T. O. S., & O’Neill, E. (2014). Communication, MSMEs, and Women Empowerment for National Development in Nigeria. Asian Journal of Research in Social Sciences and Humanity, 4(3), 21–34. Retrieved from https://aijsh.com/shop/articlepdf/org/socialscience/paper686.pdf Oyesomi, K., Salawu, A., & Olorunyomi, B. (2017). Indigenous Communication: Socio-Economic Characteristics Influencing Contemporary Female Political Participation. Journal of International Women’s Studies, 18(4), 164–181. Available at http://vc.bridgew.edu/jiws/vol18/iss4/12

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Oyesomi, K. O., & Salawu, A. (2019). Assessing the Uniqueness of Indigenous Language in Advertising: Analysis of Figurative Language Used in Selected Telecommunication Yoruba Advertisement in Nigeria. Qualitative Report, 24(10), 2574–2591. Retrieved from https://nsuworks.nova.edu/tqr/vol24/iss10/12 Healthy People. (2010). United States Department of Health and Human Services. Use Communication Strategically to Improve Health. Retrieved May 17, 2019. Popoola, I. S. (2006). Print on the Air, an Appraisal of Koko Inu Iwe Iroyin, a Newspaper Review Programme on Metro FM, Lagos. In A. Salawu (Ed.), Indigenous Language Media in Africa. Lagos: Centre for Black and African Arts and Civilisation (CBAAC) pp. 326-346. Ransome-Kuti, O. (2009). Health Care and the Mass media. In R. Akinfeleye (Ed.), Health and Behavioural Change Communication for Development (pp. 38–47). Ibadan: Spectrum Books Limited. Rice, E. S., Haynes, E., Royce, P., & Thompson, S. C. (2016). Social media and digital t echnology use among Indigenous young people in Australia: A literature review. International Journal for Equity in Health, 15(81). PMID:27225519 Rogers, E. M., & Antola, L. (1985). Telenovelas in Latin America: A Success Story. Journal of Communication, 35(4), 24–35. doi:10.1111/j.1460-2466.1985.tb02970.x Rommy, N. R. A. (2017). Researching Indigenous Ways of Knowing-and-Being, University of South Africa, South Africa. DOI: doi:10.4018/978-1-5225-0833-5.ch002 Salawu, A. (2004). Development Communication in Yoruba Newspapers. In E. O. Soola (Ed.), Communicating for Development Purposes (pp. 172–184). Ibadan: Kraft Books Limited. Salawu, A. (2006). Indigenous Language Media: A Veritable Tool for African Language Learning. Journal of Multicultural Discourses, 1(1), 86–95. doi:10.1080/10382040608668533 Salawu, A. (2019). Alaroye, Isoleszwe and the Adoption of Digital Technologies. In A. Salawu (Ed.), African Language Digital Media and Communication (pp. 33–45). London, UK: Routledge Taylor and Francis Group. Sokey, P. P., Adjei, E., & Ankrah, E. (2018). Media use for health information dissemination to rural communities by the Ghana Health Service, 1. Journal of Information Science Systems and Technology, 2(1), 13–22.

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Thomas, R. K. (2006) Introduction to Health Communication. Retrieved from eknygos.lsmuni.lt/ springer/189/1- 7.pdf UNESCO. (2005). Convention on the Protection and Promotion of the Diversity of Cultural Expressions Quadrennial Periodic Report on Measures to Protect And Promote the Diversity of Cultural Expressions. Van Biljon, J., & Kotzé, P. (2008). Cultural Factors in a Mobile Phone Adoption and Usage Model. Journal of Universal Computer Science, 14(16), 2650–2679. Weller, J., Boyd, M., & Cumin, D. (2014). Teams, tribes and patient safety: Overcoming barriers to effective teamwork in healthcare. Postgraduate Medical Journal, 90(1061), 149–154. doi:10.1136/ postgradmedj-2012-131168 PMID:24398594

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Wilson, P., Hearne, J., Córdova, A., & Thorner, S. (2017). Indigenous Media “Native Americans” Oxford Bibliographies article DOI: doi:10.1093/OBO/9780199791286-0229 Wilson, P., & Stewart, M. (2008). “Introduction: Indigeneity and Indigenous Media on the Global Stage.” In P. Wilson, & M. Stewart (Eds.), Global Indigenous Media: Cultures, Poetics, and Politics. Durham, NC: Duke University Press, 2008. DOI: doi:10.1215/9780822388692-001

KEY TERMS AND DEFINITIONS Communication: This refers to the transmission or exchange of information and implies the sharing of meaning among those who are communicating. Development Communication: This refers to the use of strategic communication to facilitate the alleviation of social problems in evolving societies. Development communication techniques include information dissemination and education, behaviour change, social marketing, social mobilization, media advocacy, communication for social change and community participation. Digital Age: This is a period in human history where a shift process occurs from industrial based to information- based economy using computer and other technology devices as medium of communication. Health: This is a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity. Health Communication: It encompasses the study and use of communication strategies to inform and influence individual and community decisions with the purpose of enhancing health and wellbeing. Health Literacy: This is the degree to which an individual has the capacity to obtain, communicate, process, and understand basic health information and services in order to make appropriate health decisions. Indigenous Language: This is a language that is native to a region and spoken by indigenous people. Indigenous Language Media: This is the forms of media expression that are conceptualized, produced and/or created by indigenous people and is used as vehicles for communication, cultural preservation, cultural and artistic expression, political self-determination, and cultural sovereignty.

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This research was previously published in Emerging Trends in Indigenous Language Media, Communication, Gender, and Health; pages 123-145, copyright year 2020 by Medical Information Science Reference (an imprint of IGI Global).

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50

Chapter 4

Indigenous Language Media, Communication, and Sickle Cell Disorder:

Peculiarities of Indigenous Language Media in Tackling Misconceptions of Sickle Cell Disorder Opeyemi Olaoluwa Oredola https://orcid.org/0000-0002-0361-3895 Covenant University, Nigeria Kehinde Opeyemi Oyesomi https://orcid.org/0000-0002-5318-0442 Covenant University, Nigeria Ada Sonia Peter Covenant University, Nigeria

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ABSTRACT The importance of health communication and information cannot be over emphasized especially with issues related to sickle cell disorder. Sickle cell disorder, common among Africans, has a lot of myths and misconceptions tied to it, so this chapter unearths and explores how indigenous communication can facilitate learning and understanding of the disorder majorly in rural areas and some urban areas where knowledge of the disorder is assessed low using the focus group discussion. It also reveals the importance of incorporating indigenous language and communication techniques in increasing awareness and eradicating stereotypes as regards sickle cell disorder. The findings of this chapter reflect that misinformation occurs due to lack of proper understanding of language used in sickle cell health communication-related issues. Hence, this chapter proposes that health education about the concept of SCD should be executed majorly in indigenous languages and through the indigenous media platforms. DOI: 10.4018/978-1-6684-2414-8.ch004

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 Indigenous Language Media, Communication, and Sickle Cell Disorder

INTRODUCTION There is no other known inherited disorder present at such high frequency in a large population and of comparable severity as sickle cell anemia in Africa. With rising standards of living and control of malaria, sickle cell anemia will become an immense medical, social and economic problem throughout the continent (Elguero, et. al, 2015, p. 3). The World Health Organization projects that as many as 30% of Nigerians are carriers of the sickle cell trait. An estimated 150,000 children are born with the disease in Nigeria each year, in the absence of knowledge and how to manage the disease, many go in search of their own cures (Adegoke, Kuteyi 2012, p. 5). In order to increase the awareness, eradicate myths and misconceptions amongst Nigerians on the disorder, indigenous language media becomes a potent tool in communicating such. In Nigeria, Sickle Cell Disorder and linked education is now being taught as part of social studies in colleges, consequently generating more awareness nonetheless, this is limited in rural areas (Olakunle, Kenneth, Olalekan, & Adenike, 2014, p. 13). However, this limitation can be curbed if the technique of indigenous language is employed in educating carriers and relations on issues related to the disorder. This paper therefore examined the importance of incorporating Indigenous language and communication techniques in increasing awareness and eradicating stereotypes as regards sickle cell disorder. It is believed that the authenticity attached to indigenous communication techniques via indigenous language can be used effectively to teach the peculiarities of sickle cell disorder. The study also seeks to find out how indigenous communication can facilitate learning and understanding of the disorder majorly in rural areas and some urban areas where knowledge of the disorder is assessed low. This study will employ the use of focus group discussions in analyzing the uniqueness of indigenous language media and communication techniques in creating and expanding knowledge as regards sickle cell disorder. Literature will also be reviewed to find out the research findings and positions of scholars and researchers on the subject matter. The results of the study brought to fore the distinctive peculiarities in employing the indigenous language media and establish a high level of understanding of the disorder as opposed to modern and western communication techniques which had yielded little or minimal desired results. The researchers therefore argue the need to examine the use of indigenous language media and communication technique in tackling the misconceptions and eradicating the myths by educating the populace through the use of indigenous language media whose reliability has been proven by several authors over other media forms.

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BACKGROUND TO THE STUDY Sickle cell disease (SCD), also known as sickle cell anemia or sickle cell disorder is one of the most widespread inherited lethal diseases in the world; and was first described in 1910 (Herrick, 1910). It is a common genetic disorder caused by mutations in both copies of the β-globin gene, a major subunit of hemoglobin (Hb) which damages and deforms red blood cells. The clinical picture of the disease usually emerges after four months of age with highly phenotypically variable disease (Bunn, 1997). SCD affects millions of people worldwide. About 300, 000 children globally are born yearly with the disease (Okpala, Thomas, Westerdale, Jegede, Raj, Daley, & Abbs, 2002), whose origin is traceable to the people of Sub Saharan-Africa, Mediterranean, Middle Eastern, and Indian descent (Luzzatto, 1981). Amongst these groups, people of Sub-Saharan African are known to have the highest occurrence (Gubis, Ferster, Kentos, 51

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 Indigenous Language Media, Communication, and Sickle Cell Disorder

N’Gay Munungi, Cotton, & Vertonge, 2005; Creary, 2007). A plethora of major clinical symptoms are associated with SCD. Some of these include chronic pains, acute anemia, infection, and joint swelling and other idiosyncratic complications (Serjeant & Serjeant, 2001). These symptoms often require sufferers go to a variety of Specialists for management. It has been estimated that up to 90% of patients are admitted to hospitals at one time or the other for episodes of pain (Brozovic, Davies, & Brownell, 1987). Individuals with SCD are also at risk of academic failure, as well as psychosocial maladjustment (Brown, Armstrong, & Eckman, 1993). Approximately three quarters of all new SCD births and 7.0% of the world’s carrier population of the SCD gene are found in Africa (Weatherall, 2001). SCD is a key health problem in Nigeria, the most populous black nation in Africa, with a population of over 140 million. It is estimated that SCD affects about 2% of the general population in Nigeria, which is has the highest incidence of SCD patients than any other country in the world, with over 24% of the population being carriers of the muted gene (World Health Organization (WHO, 2006). The life expectancy of patients with SCD is reduced by 25-30 years compared to that of the general population (Platt, Brambilla, Rosse, Milner, Castro, & Klug, 1994). Over the years, progress in scientific breakthrough has resulted to an increasing number of SCD Patients living longer, with fewer incidents of painful crises, and enhanced improved quality of lives. The most scientific breakthrough is the use of a drug called hydroxyurea which has reduced mortality dramatically in developed countries. Despite these scientific advances and breakthrough in ensuring SCD patients live longer, these advances and its applicability are still very scanty in poorer countries of the world. Patients with SCD are faced with the difficult challenges of having access to drugs and qualified doctors to provide them the latest advancement in the management of their condition. The epidemiology of SCD has made it a global disease of public health importance that has been recognized by the WHO (Makano, Williams & Marsch, 2007). In fact, the UN-WHO resolution (22 December, 2008) declaring 19 June the World Day for Sickle Cell and Thalassemia underscores the global importance of the disorder. Mabayoje (1956) highlights the burden of the disorder is this way:

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Sickle cell anemia is a major disease of West Africa. It is a cause of distress in many families. It therefore deserves much better recognition than it gets at present. It should be treated as a major disease in schools of tropical medicine, textbooks and in all medical schools in tropical Africa. (p. 196). SCD is a serious disorder that needs close monitoring in the population (Michael, 1993). Its management is burdensome on sufferers, and it has been demonstrated to affect psychological well-being (Bamisaiye, Bakare, & Olatawura, 1974; Ohaeri, Sokunbi, & Akinlade, 1995). The Nigerian society, and by extension African societies, have an aberrant attitude towards people with various forms of illnesses in the form of stigma, rejection, and disrespect. It is thought that illnesses like SCD are caused by witchcraft, magical spells, curses, or water spirits. These misconceptions, according to Ugwuegbu (1994), may lead to negative attitudes towards SCD patients. SCD symptomology compares in some respects with the ogbanje (Igbo) or Abiku (Yoruba) phenomenon (Nzewi, 2001) expressed in Wole Soyinka’s (Soyinka, 1967) and J.P Clarke’s (Clarke, 1967) Abiku. In the preternatural the Abiku is ‘ageless’ and lives on the baobab and other big trees from which s/he selects a mother from among humans and enter a continuous cycle of birth, death, and rebirth to the same woman, preventing the birth of more children to the home. Clarke expresses it thus...Tired, her milk going sour, where many more mouths gladden the heart. The Abiku’s intention is assumed to be the punishment of the particular family that has been chosen. Thus, the following line written by Soyinka: ...Must I weep 52

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 Indigenous Language Media, Communication, and Sickle Cell Disorder

for goats and cowries, for palm oil and sprinkled ash? Mothers! I’ll be the suppliant snake coiled on the doorstep, yours the killing cry. Moreover, the child is thought to have the ability to either stay alive or die, and therefore are usually urged to ‘step in and stay’, and given reasons and promises to do so. Negative attitudes to and stigma against people living with sickle cell disorder, emanate from a lack of knowledge of the nature of the disorder, and add up to the burden imposed on Patients and their families. They also influence the health-seeking behaviour of patients and their family members (Asakitipi, 2008). Families of SCD children may rather seek spiritual solution than medical counselling/intervention, especially in the rural areas. Although Onwubalili (1983) did suggest the decrease in belief in the ogbanje phenomenon due to advances in the medical science, supportive data to that effect is still lacking. To effectively manage, control, and prevent SCD the public needs must understand it properly. The objective of this study therefore is to determine the impact of indigenous language media in increasing general knowledge and tackling misconception of SCD by University students. The level of awareness of etiological and possible interventions in SCD would be investigated in the study. Misconceptions, wrong attribution of causes and treatment would be investigated in the study. The study would similarly highlight areas of inadequate knowledge. It is hoped that the findings from this study would encourage the development of promotional and educational approaches that would enhance the understanding, management, and prevention of SCD.

RESEARCH QUESTIONS In view of the objectives of this study, the following are the research questions for investigation: 1. How can indigenous communication facilitate learning and understanding of sickle cell disorder? 2. What are the importance of incorporating indigenous language and communication techniques in increasing awareness and eradicating stereotypes as regards sickle cell disorder? 3. How do indigenous languages influence the reception of information and messages as regards sickle cell disorder? 4. How can indigenous language communication be used to tackle myths and misconceptions as regards sickle cell disorder?

CONCEPTUAL CLARIFICATIONS

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Indigenous Language Media The exceptionality of indigenous language media for development purposes cannot be over emphasized as shown in previous studies (Oyesomi, Salawu & Olorunyomi, 2017, Oyesomi, Okorie, Ahmadu & Itsekor, 2014, Oyero, Oyesomi, Abioye, Ajiboye & Kayode Adedeji 2018, Oyesomi & Salawu, 2019). It is evident that the battle for the soul of African languages is not yet over. Rather than the languages becoming increasingly appreciated and embraced by the owners, there is evidently a decline (Eyoh, 1986 p. 112; Salawu, 2001). This worrisome decline is signposted by the advancement of technology and modernity. The explanation is that as Africans admire technology and crave modernity, they see everything African (language, culture) as primitive and ancient. It is apparent that originality and excel53

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 Indigenous Language Media, Communication, and Sickle Cell Disorder

lence in African languages and cultures are quickly vanishing, as there remains only a small remnant of that authentic tradition. Many of the old Africans who were well versed in the excellent use of African languages in all their ramifications (diction, idioms, proverbs, phonology) are no longer alive. Only a very negligible few young Africans can really boast of excellence and originality in the use of African languages. In most developing countries, communication in indigenous languages has been adversely affected due to the fact of their colonisation. For instance, English is Nigeria’s official language and the main medium of communication; therefore, indigenous languages are not highly esteemed. The structure that the colonialists handed down remains today, decades after they have left. In fact, it is even more strengthened as English (for instance) and Western education continues to be the language and education of power and progress in life. Therefore, there is understandably ever and fast-growing interest in both the language and the education. But by far the greatest problem militating against the survival of African languages is that of the attitude of most native speakers to their languages. This was further explained by NgugWa Thiong’o, a foremost Kenyan writer, in an interview, who painted the picture thus: “Whereas you see today people identify themselves with that which is removed from them. That which is near them, they don’t want to identify with”. (Eyoh, 1986, p. 112). The elites are, however, the guiltiest of this. This is, equally, reflected in their attitude towards the patronage of indigenous language press, in terms of readership and advertisement placement (Salawu, 2004a, 2004b). For instance, Salawu (2004b p. 213) found that the higher the level of education, the lower the readership of Yoruba newspapers. This means that the more (Western) education a respondent acquires, the more likely he is not to be able to operate (speak or read) in the local languages; and, of course, the more his interest in local language and culture will wane. Similarly, the study revealed that the higher the level of education, the less regular the readership of Yoruba newspapers. The study also revealed that people with a higher education level, who are most likely to be in the higher income level, read the Yoruba newspapers less and less regularly than the low-income earners. Already, some African languages have ceased to exist. Again, there are palpable and genuine fears that many more are on the verge of extinction. The disappearance seems only a matter of time now. For any African with a concern for the soul and survival of his language and culture, there must be a deliberate and sincere effort to learn and teach the language in its proper form (Adegbite, 2002). Alas, the situation with the learning, and by extension, the teaching of African languages is by no means cheerful. Not many young Africans are interested in learning the languages, ether formally or normally. Akinleye (1988) discloses that nobody has studied Efik (a language in the South-eastern part of Nigeria) n the senor secondary schools in the past 14 years. The situation may just be a little better with the bigger African languages. Compared to the enrolments for the study of European languages (like English and French) n our universities, there is a lot to worry about n the enrolments for the study of African languages. In fact, many of the students of African languages in the universities carry on with diminished egos. At the school level, the performance in African languages is anything but excellent. Awoniyi (1995 p. 446) showed the failure rates in the Yoruba language at both the West African School Certificate and Primary School Leaving Certificate levels over a period of years. For instance, between 1983 and 1985, over 44% of the total number of candidates who sat for the Yoruba language at the WASC Examination failed. The important point to make here is that there is a problem with the teaching and learning of African languages. Yet, the languages must be taught and learnt. This is because no group of human beings can afford to have its language discarded. It is only in teaching and learning the languages that the heritage will 54

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 Indigenous Language Media, Communication, and Sickle Cell Disorder

live on. Every language reflects the culture of a people. Thus, it is local to say that people would express themselves and their cultures better in the language of their own. Communication is better enhanced in a medium that expresses the totality of the culture of a given people (Broughton et al., 1978). One of the arguments against the development and use of African languages as languages of the media is the multiplicity of the languages. It is claimed that linguistic diversity in Africa is of such proportion that Africans cannot share or work in their own languages (Prah, 1999 p. 3). Africa is sad to have 2000 languages, 400 of which are found in Nigeria alone. For this reason, it is argued that it is too late for African languages to be developed. Africans should therefore carry on n the colonial languages’ (Prah, 2001). Labeling the African language multiplicity as ‘Tower of Babel myth’ (Egbokhare, 2004 p. 8), Prah (2001 p. 188-189) pointed out that the real problem appeared to be the criteria used to count African languages. Eghokhare et al. (2001) contended that 80% of Africans speak no more than 12 key languages: Fulfulde, Hausa, Swahili; Nguni, Sotho-Tswana, Western InterLacustrine Bentu, Amharic, Yoruba, Igbo, Bamsara, Oromo and Luo. They argued further that the so called 400 languages in Nigeria can be reduced to less than 100 mutual intelligibility clusters. Referring to the sad publication, Egbokhare (2004 p. 9) states: Besides, if we take the population of those who speak the 10 major and medium languages ether as first or second languages in Nigeria, we would cover close to 90% of the population. There is no reason for instance why Efik, Ibibio, Anang should be listed as different or why a large number of the Edoid languages are listed as separate autonomous languages (Egbokhare et. al 2001). Prah (1999) sad that as far as African development is concerned, the upshots of these facts are that the harmonization of African languages which show high levels of mutual intelligibility would greatly facilitate the economics of scale in the development of educational, media and cultural materials which would go a long way in strengthening the bass of society for the cultural and social development of Africa. It provides the key to the methodology of eradicating the stigma of inferiority, which the colonial experience has invested in African languages. No region of the world is linguistically monolithic, which means there is diversity in the modes of communication used in different regions of the world (Cheyney, 1992). And, despite the dominance of some languages, the smaller languages continue to exist and are spoken with relish by their native speakers and used to varying degrees in the media (Lasswell, 1948; 1960 & 1989).

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Indigenous Language Media in Nigeria When the modern television broadcasting system came to Nigeria, the expectation was that t would provide adequate services in education, social and economic development (Emenyonu, 1982). The system was also expected to transmit the Nigerian and African cultures, tradition, politics, literature, drama and entertainment (UNESCO, 1974). As expected, the system, at its inception, did very well in the area of education. However, it left a big gap in the area of cultural transmission. Between 1959, when television came to Nigeria, and 1975, the nation heavily depended on foreign imported programmes. UNESCO (1974) noted that only 25% of the programmes were produced within the nation; the rest were foreign. For this reason and also because of the frequency allocation problem (Eyoh, 1986), the Federal Government of Nigeria decided in 1975 to take over the administration of all television station in the country. While justifying the decision, the government sad it would like to see television ‘highlight

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 Indigenous Language Media, Communication, and Sickle Cell Disorder

the way of life of Nigerians as against the present programmes whereby foreign films which have no relevance to our way of life dominate their dally events’ (Folarin, 2000). According to Oyetunde and Umolu (1991), this intervention appeared to have changed the tide for good for cultural transmission and the use of local languages on the nation’s television. The radio system was also affected, as around this time, precisely n 1978, the Federal Radio Corporation of Nigeria (FRCN) Decree No. 8 was promulgated. Amongst other things, t restructured FRCN into four linguistic zones, namely: Kaduna: Hausa, Fulfulde, Kanuri, Nupe and English. Enugu: Igbo, Tiv, Izon, Efik and English. Ibadan: Yoruba, Edo, gala, Urhobo and English. Lagos: English. The local languages and English designated for various zones became each zone’s languages of broadcasting. Radio stations across the country actually contributed to the promotion of a number of Nigerian languages through various message types and programmes: news, features, interviews, discussion programmes and chit-chats. The situation has, however, changed with some radio stations and some languages in Nigeria. For instance, Onukaogu (2002) noted that the media in Cross River and Akwa Ibom States are no longer gang prominence to the local language known in that area, Efik. According to him, out of a total of 7560 minutes expended n broadcasting in the week, only a total of 425 minutes is allocated to the indigenous language, leaving a total of 7135 minutes for programmes in English. This translates to 5.6% for local language and 94.4% for English. Onukaogu remarked: The result is that the medium that should create awareness for the people in local language has little or no regard for the local language. Consequently, publishers’ audience size dwindles and the attraction to publish in these languages became inexistent. (Onukaogu, 2002 p.9). By and large, the print media seem more culpable than the electronic media in the use of local languages. This is probably accounted for by virtue of the broadcast media being principally an oral/aural medium. Being oral, the indigenous language does not cost the broadcaster, who may not be able to write it, anything to broadcast n t (Osgood, 1954). Also, being aural, it does not cost the listener, who may not be able to read the language, anything to listen to it. In other words, the broadcast medium breaks the barrier of illiteracy. Added to this is the economic nonviability of publishing in indigenous languages. t has already been settled that Africans, especially the educated (Western), do not seem to appreciate their languages as being fit for serious matters of education, business, governance etc.; as such, they do not patronize it. Unlike the broadcast media, the print media require repeated purchase for use. So, if the educated, who are more likely to have the economic power to purchase, are not appreciative of their languages, then they cannot patronize the media ether in terms of copy purchase or placement of advertisements. This, actually, is the reason why newspapers, especially those published in indigenous languages, have not been viable. Though it is true that the indigenous language press marked the beginning of the Nigerian press, the fact remains that despite this historical masterstroke, things have not been rosy for the indigenous language press (Salawu, 2001a, 2004b). For instance, until the emergence of the Alaroye phenomenon on the scene of the Yoruba press in 1996, this section of the press had remained silent for a long time (Salawu, 2004c). The emergence of Alaroye newspaper in 1996 marked a milestone in the affairs of Yoruba and, indeed, the indigenous language press in Nigeria. Within a short time, this newspaper became popular because of its arresting cover design and styles of headline-casting and story presentation. t actually popularized reading of Yoruba newspapers among the people. It is the largest local language newspaper, with a circulation figure of not less than 150,000 per week. It sells in Europe and several West African countries where the Yoruba reside. Its publishers, 56

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 Indigenous Language Media, Communication, and Sickle Cell Disorder

World information Agents, have also added other Yoruba publications to their titles. They include: Alaroye magazine, Atoka Alaroye, IririAye and Akede Agbaye. There is no doubt that with the tremendous patronage the Alaroye publications and similar others are enjoying, the appreciation and learning of the Yoruba language, for instance, will be fast tracked.

Indigenous Language and Health Promotion As opined by Webster (2018), the dearth of health services and promotion rendered in Indigenous languages is hampering the delivery of care and information to Indigenous populations. In most scenario, health care personnel who do not speak or understand indigenous languages rely on patients and other staff as informal interpreters, although they have limited understanding of medical terminology. Training health care workers who speak local languages can reduce linguistic barriers to receiving adequate health care. Furthermore, the existence of information from care givers and experts on sickle cell disorder in local languages will facilitate the reception and understanding of messages as regards the disorder. Additionally, employing the use of indigenous language during health campaigns will aid understanding and reduce drastically myths and misconceptions amongst the people. A 2015 report by the Office of the Languages Commissioner of Nunavut found that language boundaries negatively affect access to medicinal services, understanding privacy, access to psychological wellness administrations, consistence to treatment plans and human services costs. It additionally influences nature of consideration, and can prompt misdiagnoses, medicinal mistakes and ill-advised drug, expresses the report. Furthermore, Webster believes language is a good indicator of a person’s “cultural connectedness,” Indigenous patients and health care givers who speak their cultural tongue are more likely to be connected to their culture, which in turn improves their well-being. Likewise, being unable to speak their people’s tongue is a red flag of cultural disconnection, which is linked to worse health outcomes. Regarding promoting health services, Oyero (2007) noticed that indigenous language has demonstrated to be intense in making a minimum amount of genuine communication for generous change.

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Indigenous Communication Techniques Indigenous information is preserved and adapted by being used and communicated to others. Just as the mass media and other external channels manly carry messages generated outside local communities, localized indigenous channels manly carry information about local issues. Understanding how such information is communicated could be an important key to identifying local technologies that can be adapted and used elsewhere. Indigenous communication can take many different forms. They are explained hereunder: Folk media are the forerunners of mass media. Like the mass media they are used primarily for entertainment, but may also promote education, social values, and cultural practices (Schramm, 1954). Each culture has its own forms: song, dance, puppetry, festivals, plays, storytelling, debates, proverbs, parades, and so on. Up until very recently, Icelandic commutes passed the long hours of winter darkness entertaining each other by recounting the great sagas. The sagas were used to transmit information which both amused and educated and served to retain much indigenous knowledge in the commutes. Television, introduced only in the 1960s in that country, threatens to undermine this tradition. When

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 Indigenous Language Media, Communication, and Sickle Cell Disorder

development professionals talk of communicating with technology users, many are thinking of the mass media or extension agencies. Vast amounts of money have been poured into building up these organizations and promoting messages through them, and a myriad of studies has looked at how they function and how effective they are (Severin & iTankard, i1992). i Outside agencies have often adapted folk media to carry messages on topics such as family planning or politics. While such strategies can be very successful, they have two dangers: the implanted messages may not fit the chosen medium, and audiences may resent outsiders who tamper with the traditional form. Deliberate Instruction. According to Uche (1989), parents teach children, craftspeople instruct apprentices, elders guide youths, and adolescents undergo initiation rites. Many societies have traditional, often religious, schools. Much of the information that is needed to survive is learned not through the occasional puppet show or even through schools or the mass media, but through deliberate instruction. This is just as true in the industrial world, yet deliberate instruction has received little attention from development specialists. One way in which outsiders can make use of these channels is by training and learning from indigenous professionals, adding to instead of replacing the skills of traditional healers of both humans and livestock, blacksmiths, and midwives. These experts can then teach their new skills to their clients and apprentices. Tapping into and co-operating with the indigenous experts who already serve their communities avoids the costly training of new personnel from scratch, avoids creating tensions in the community by superimposing new people and staff where capacity already exists, and ensures that people in remote areas receive services that would be difficult to provide conventionally. Informal channels carry perhaps the bulk of indigenous communication. At home, in the tea house, in the fields and on the road, in the chief’s house and at the market - all are situations where technical information and skills can be communicated. Such communication is not orchestrated or controlled, but is spontaneous and informal. Development professionals have tried to take advantage of informal channels by trying to place messages in the form of posters and radio programmes into areas where people gather, such as mosques, coffee shops, grinding mills, and wells. Outsiders often hope that these informal channels will take over and diffuse the message further once a few key opinion leaders have been informed. But this is not always the case. People must consider a message sufficiently ‘newsworthy’, and credible, before they pass it on to others in informal conversation. And what they do say is coloured by their own memory and interpretation, which can lead (in the eyes of project officials) to message distortion and loss. But in the eyes of local people, such selective communication can also lead to local innovations and cultural adaptations. Records may take many forms. Balinese irrigation associations traditionally write land ownership records and tax obligations on palm leaves. Chinese libraries contain ancient works of immense current value - an example being the descriptions of medicinal plants that Chinese scientists have drawn on recently to discover the new anti-malarial drug, artemisinin. But records need not be written: African storytellers narrate memorized historical epics and genealogies in detail and at length. Direct observation Communication does not have to be intentional - or even involve another person. Most learning during childhood and apprenticeships is a result of imitation. A farmer may see a neighbour’s bumper crop and conclude that the variety or technique used is good.

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 Indigenous Language Media, Communication, and Sickle Cell Disorder

THEORETICAL FRAMEWORK Media Framing Entman (2007 p. 168) defines framing as the process of gathering selected elements of a perceived reality and constructing a narrative that leads to a particular interpretation. Prominent media narratives shape attitudes about a chronic illness such as sickle cell disorder (Entman and Rojecki, 2001). Thus, in addition to direct personal encounters (e.g., knowing someone with sickle cell or learning about it in school), an individual’s perceptual schema about the condition may be influenced by the information that she or he acquires through indigenous, modern or online media. This point is particularly relevant given the increased media visibility that sickle cell has received over the last decade. A recent search of the LexisNexis Academic database revealed that more than 950 print articles about sickle cell disorder appeared in major American media outlets between 2007 and 2009. Beyond the surprisingly large number of media are the implicit frames communicated through them. Sickle cellrelated media generally fall into two categories: (1) biomedical characteristics, where basic information about etiology or clinical treatment of the condition is provided (e.g., Weiss, 2007, p. 2); and (2) human interest aspects that highlight personal challenges and social implications of managing sickle cell disorder (Lee, 2007 and Lerner, 2007). ‘Human interest’ media frequently portray Blacks as subjects, while media describing biomedical aspects of sickle cell disorder rarely mention race or ethnicity (Bediako and Haywood, 2009). In addition, educational materials about sickle cell disorder often feature phenotypically dark-complexioned individuals. This is an important point because despite the global impact of sickle cell (and, concomitantly, its racial/ethnic diversity), the almost exclusive pairing of the condition with darker-skinned individuals may reinforce the perception that people of colour (particularly Blacks) are prototypical exemplars for sickle cell (Wailoo, 2001, Bediako and Haywood, 2009, p. 1066). As we discuss later, this perception though usually unintended may have significant consequences.

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Social Cognitive Theory Theories that emerge from research on social cognition, or how people process, encode, and retrieve information and apply it to social situations (Higgins, 1996 p. 145) could also potentially inform a general conceptual framework for studies that investigate the influence of race on social attitudes toward sickle cell disorder. Social cognitive research describes the tendency for perceivers to use schemas, or mental shortcuts, to fill in the gaps when they are unsure about their observations of social phenomena (Fiske, 2010). Implicit personality theories constitute one type of schema that individuals use to form judgments of what others are like (Asch, 1946 p. 246). Some researchers purport that individuals use implicit personality theories to organize various personality traits into meaningful categories that help them to efficiently make sense of others (Sedikides and Anderson, 1994, p. 298). This construct is particularly relevant to studies of social attitudes about sickle cell disorder for three key reasons. First, as previously noted, media invariably pair images of sickle cell disorder with that of Blacks. Second, research has shown that there are pejorative connotations associated with Black people and that these connotations are ubiquitous particularly in American society (Goff, Eberhardt, Williams & Jackson, 2008 p. 298). Third, the consistent portrayal of sickle cell as a Black disorder and the generally depreciatory social attitudes associated with Black people are expected to yield an implicit theory where the condition is 59

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 Indigenous Language Media, Communication, and Sickle Cell Disorder

not only perceived to be exclusively associated with Blacks, but also grouped with negative attitudes that exist about them. As a result, attitudes toward sickle cell disorder may not only be derived from illness-related perceptions, but might also reflect general social views grounded in subtexts related to race (Rouse, 2004). Consequently, it follows that perceivers who see sickle cell disorder as exclusively related to Blacks would also be more likely to utilize implicit theories that associate the condition with dominant cultural themes about Black people. We speculate that race-based views of sickle cell disorder, though most likely implicit, can shape attitudes among providers and the general public that influence clinical outcomes and public health efforts.

METHOD This study adopted a focus group method in order to capture information regarding the subject from randomly selected 15 respondents above the age of 18 years. Three focus groups (FGA, FGB and FGC) of five people met on three occasions each. The focus group transcripts were analyzed using an open coding approach, staying close to the original testimonies by highlighting scripts in terms of descriptive, linguistic and conceptual comments, identifying emergent themes, and searching for cross-connections between themes. The coding process was iterative, involving reading emerging codes against the other transcripts, refining the coding scheme and re-reading these against the transcripts again until theoretical saturation was reached and the coding scheme mapped appropriately to material in all transcripts.

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DISCUSSION The first focus group in each series reiterated many themes from the individual focus group, as participants were introduced to one another for the first time and shared their challenging experiences of sickle cell disorder and the orientation about myths and misconceptions which they have heard from the society. Even in the first FGs complex exchanges suggested good rapport was established early between the participants. During the course of the focus group discussion, the participants drew a reflection on the perception of people about sickle cell disorder in their communities. They further perceived the failure of the traditional and modern media in tackling the myths and misconceptions of sickle cell disorder. Hence, they suggested a need to use the indigenous language media techniques in tackling this myths and misconceptions. Aderonke, Joke, Gbenga, Damilola, Comfort, Hannnah, Odekunle and Eniola hails from: Oyo, Ogun, Osun, Ekiti, Lagos, Lagos, Kwara and Ondo state respectively. These are the south-western states of Nigeria where cultural beliefs and traditions were held in highest esteem. The participants affirmed that their primary language was Yoruba which was their mother-tongue. They buttressed that quite a number of sickle cell patients are living in daily fear due to the stigmatization from the community. The stigma many at times, come in form of verbal abuses and misconceptions in the indigenous language of the community.” Awon omo ti o pe, (incomplete children), Aisan foniku, fola dide, ogun idile lo ma n faa (Sickle cell diseases are orchestrated by family curses from the dieties), Awon omo ti won ti gbabode, agba naa ni won je (Sickle cell patient seen as evil obsessed individual and a black sheep of every family on a mission to bring setbacks to that family). 60

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 Indigenous Language Media, Communication, and Sickle Cell Disorder

Furthermore, the participants identified during the course of the focused group discussions that people who have no genuine access to the sensitization and awareness regarding sickle cell disorder, hence the falsehood and misconceptions about sickle cell diseases. These findings were not quite surprising as these dogmatic views is equally obtained in most rural and countryside areas of the country. The focused group discussions among the participants are summarized below: Aderonke (Female, 26 Years): Having sickle cell disorder is not a big deal as long as you love yourself and believe you can cope with all kinds of pain associated with sickle cell. Any pain that comes your way, you can cope better than someone that is not an SS patient. Each time I see this, I get stronger and stronger. It makes me feel that my blood is a wonderful blood regardless of societal perspective about me. When an SS patient, goes through pain, he would get up and move around, but some others when they go through that pain, that’s the last of them. They will not make it; the next thing is they are in the mortuary. So that keeps me going. The pain I’m talking about is the shame and reproach of the society which you can term as myths and misconceptions about sickle cell. I come from a polygamous home in the south-western part of Nigeria (Yoruba tribe) where people tag sickle cell patients as ‘Emere’ (demon possessed). This is a big stigma, but I have decided to always encourage myself and not be deterred by the disposition of people around me. In the focus groups, participants began to share information with one another, such as their perception about sickle cell Joke: I know of a sickle cell woman that pounds yam for seven people in the household to make them happy. Gbenga: Ha! She wants to kill herself. Damilola: There are some people who would like to show that they can meet up with responsibilities and would want to satisfy others to the disadvantage of themselves. I cannot do that.

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Comfort: This is what I have been saying. We need to be our brother’s keeper. I could imagine many persons with sickle cell trying to prove that they are strong and they kill themselves. We can save these persons as a group. When we talk on radio and television and any other means so that people know and understand what we can do and cannot do. When people know you have hypertension, they do not stress you. And the person with hypertension tells them and will not stress himself. Why can’t they do same thing for people with sickle cell? Gbenga: It is the person with sickle cell who is trying to prove what is not there. It is the person with sickle cell that needs to be taught on what to do and what not to do and to have our backing as a group. She is killing herself under pretense [FGB1: 13]. The participants recognize a particular type of situation in which perceived pressure to meet societal expectations runs the risk of contravening good self-care, and that it falls to them, acting as group on the basis of shared group interests, to advocate on behalf of individuals. The focus groups also permit-

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 Indigenous Language Media, Communication, and Sickle Cell Disorder

ted the emergence of a collective challenge to the negative attitudes and reactions of others in society, and a group rejection of the myths and misconceptions that others attach to people living with SCD. Damilola: I don’t even feel comfortable saying the word ‘sickler’. It means I am known with sickness. Hannah: Yes. That word should not even be used for us. It is not a good word. Joke: It is not a good word … Damilola: I think people should know and respect us and give us the space and what we need. It is our nature and that is it. Gbenga: Once people cannot come to meet me and tell me the rubbish, I am okay. If there is a law that prohibits them from saying that and it is enforced, I am happy. [FGB1: 11]. Other ways in which they rejected the myths and misconceptions about sickle cell disorder included: challenging the attitudes of others who felt they had the right to pass opinions on those living with SCD; developing the resilience to challenge myths and misconceptions; conceiving the negative attitude/reaction of others as a form of violence against the person with SCD and challenging any individual who projected a negative image of people with SCD by use of disparaging labels especially to illiterates and unlearned individuals who may not understand the core of sickle cell disorder. However, in the later focus groups, the emphasis moved beyond merely rejecting myths and misconceptions, to the realization that the genesis of such labels lies not in themselves but in wider society.

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Odekunle: We can then go on as a group to tell people about how to support us and not to exclude us from the society by giving us names that are not our parents’ names. So, we need to work as a group to learn effective ways of responding individually to such persons and then learn how to address it as a group up to schools, and government levels. If we do it alone on the individual level, I know it is not as effective as when it is done on the group level but I think the group can teach individuals to be confident and be strong and then the group can also create awareness on a broad basis so that most people will know and support the individuals. [FGA3: 6] As Kitzinger (1994) has noted, an important feature of focus groups is the scope they provide for participants to interact, disagree and modify one another’s opinions. In these series of focus groups, the participants were able to debate and challenge different proposed strategies for dealing with societal myths and misconceptions about SCD. More so, in a bid to correct the societal anomaly of myths and misconceptions regarding sickle cell disorder using different languages, the participants, also have this to say: Eniola: I believe there should be house to house awareness or community one. I believe that people are creating awareness about SS but it is not just effective since it is not house to house. Aderonke: Who are the people creating awareness? Eniola: We have NGOs now doing it.

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 Indigenous Language Media, Communication, and Sickle Cell Disorder

Aderonke: How many times have you seen them on air or on the radio? See and I thank God that this thing is being recorded. You see, the NGOs, they are using us to enrich themselves. How will their programs be effective? Eniola: A non-SS should not speak for us … Odekunle: That is how we want it now Eniola: Yes, we don’t want a non-SS to represent us, we don’t want them to speak for us. We can do it and we will do it. [FGA2: 8] The participants thus recognized that as a group they needed to make strategic links to others who might help them. They realized that they need to canvass support from significant others, whether this was engaging with (currently nonrepresentative) NGOs; educating significant others to be better advocates for SCD or educating other community leaders about SCD. This led group participants to consider themselves more akin to group members, who increasingly referred to themselves as people with shared collective interests. It also encouraged them to delineate the areas of social policy that concerned them, which included: campaigning for genotype tests; training people with SCD to be peer counsellors; accessing and using the media for campaigns; the importance of getting many stories of SCD into the public domain because not all SCD experiences are the same; instigating reporting mechanisms for those who abuse people with SCD; ensuring support mechanisms for people with SCD; identifying possible strategies to achieve reasonable adjustments in schools/employment; ensuring strategies for reasonable adjustments for SCD were undertaken in the hospitals, and considering microfinance and cooperative approaches to improve the finances of people living with SCD. However, participants discussed how effective the indigenous language media has proven to be over time. Mundy & Lloyd-Laney, (1992), opined that the credibility attached to the forms of indigenous language media, and imbibing such in teaching or communicating values and opinions will have a long, lasting and desirable effect. Hence, in a bid to tackle the myths and misconceptions about sickle cell disorder, the participants discussed the perceived failure of the traditional and modern media, thereby calling for the indigenous language media.

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Eniola: If with all the media stations we have in Nigeria and all the social media platforms, warriors like us are still faced with stigmatizations due to the misconceptions that exist in the society, then I don’t think the media is helping us. Aderonke: Well, I think the media is helping but do people really believe what they hear or see on television, radio or internet than what they hear directly from a credible source. Aderonke: Exactly, that is why we need to go back to our old ways, I mean our indigenous ways of communication. If we can consider the use of folk media to spread more information about the disorder, then I think people will believe it more. Also, if our parents and other principal officers in children’s life can make use of deliberate instructions to give accurate information on the disorder to their children in the language they are brought up with, then such a child will grow with a good knowledge of the disorder and also pass it on to colleagues, friends, relatives when such discussion occur.

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 Indigenous Language Media, Communication, and Sickle Cell Disorder

Eniola: Truthfully, I don’t think we can have a society null of misconceptions and myths about this disorder, however, like Aderonke said, there is a need to consider the importance of the indigenous language media in reducing the stigmatization caused by the myths and misconceptions. Odekunle: If media fails us, our own words of mouth, and records we set cannot fail us. I think it is time, we consider this.

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DISCUSSION OF FINDINGS In increasing awareness and eradicating stereotypes as regards sickle cell disorder, the discussions unearth the importance of incorporating Indigenous language and communication techniques. It is believed that the authenticity attached to indigenous communication techniques via indigenous language can be used effectively to teach the peculiarities of sickle cell disorder. The discussions also emphasized how indigenous communication can facilitate learning and understanding of the disorder majorly in rural areas and some urban areas where knowledge of the disorder is assessed low. Many times, societies have succeeded in spreading misconceptions about the sickle cell disease or disorder especially in areas where there is paucity or lack of adequate information that will guide the overall wellness of victims (Panepinto, Pajewsk, Foerster, Sabins & Hoffman, 2009). Some patents of sickle cell diseases who are also residents in these rural areas agree with the incorrect notion about sickle cell diseases and mostly this fallacy is disseminated via various means of communication, such as community meetings, traditional beliefs and norms about the sickle cell disease which may lead to fetish propitiations and other unhealthy cultural practices, thereby worsening the health status of patents (Platt, Thorngton, Bramblla, Milner, Rosse, Vchnsky & Kinney, 1991; Quinn, Rogers & Buchanan, 2004 and Rees, Williams & Gladwin, 2010). More so, the evaluation of the use of media in addressing the need for information regarding sickle cell disorders is important because of the enormity of the problem (Siddiqui, Schmuk, Batista, Adames, Ayala & Stix, 2012). According to Ohaer and Shokunbi (2001), sickle cell disorder (SCD) afflicts about 100 million people worldwide. Of these, four million are in Nigeria. The magnitude of the disorder in Nigeria is best appreciated when one considers that more than one in four, or 40 million Nigerians, are careers of the sickle cell trait and that, annually, 20 per 1,000 babes are born with the disease, translating to over 150,000 babes born annually with sickle cell anemia (Omotade, 1995). To this end, the incorporation of indigenous language in sickle cell disorder education both in rural and urban areas will be potent enough to help in tackling myths and misconceptions as regards the disorder. Furthermore, it will help reduce the rate at which children with the disorder are born in Nigeria and also avail parents and other care givers comprehensible information enough to cater and manage the disorder.

CONCLUSION Though Nigeria happens to be the highest country with sickle cell patients, the level of information is still very low. People have little or no information about the rudiments of sickle cell. The negative attitude as regards SCD is discovered to be the result of low level of information (Smith, 2015).

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In a bid to tackle this, health education about the concept of SCD should be made available to adolescences in schools and through the indigenous media platforms. Information about SCD should be given more publicity, thereby creating more awareness about the disorder and given genuine facts to the public which will help eradicate negative social attitudes about sickle cell disorder. This information publicity should take into consideration the credibility and effectiveness of the indigenous language media to tackle the stigmatization that occurs as a result of the myths and misconceptions about the disorder.

FUTURE RESEARCH DIRECTIONS There is a need for more study on the impact of indigenous media information, most especially home videos and documentaries should be made available as regards Sickle Cell Disorder. This can be achieved by media coverage and reportage of accurate and relevant information on sickle cell disorder crisis and management. Furthermore, Health centers should emphasize the need of genetic counselling and testing so as to help prevent the annual increase of the disorder.

CONFLICT OF INTEREST The authors declare that there is no conflict of interest regarding the paper

ETHICAL CONSIDERATION Ethical approval obtained from the Ethics and Research Committee of the authors’ institution. Participation was voluntary and anonymous. All participant’s confidentiality is maintained, although, names and state of origin were mentioned as part of the discussions, however, no means of further identification was revealed and participants are assured contentment confidentiality of their data collected. Obtained permission from director of each research setting to conduct the study, after explaining the purpose, the consent from participants will be self-determined through their agreement to participate in the study and then the group discussion.

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ACKNOWLEDGMENT The authors recognize and appreciate the responses from our anonymous respondents as their contributions to humanity.

REFERENCES Adegbite, W. (2002) The promotion of reading habits in Yoruba and English through the media: Case study of some media. Activities in Southern Nigeria. Literacy and Reading in Nigeria 9(2).

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Adegoke, S. A., & Kuteyi, E. A. (2012). Psychosocial burden of sickle cell disorder on the family, Nigeria. African Journal of Primary Health Care & Family Medicine, 4(1), 1–6. doi:10.4102/phcfm.v4i1.380 Akinleye, J. O. (1988) A comparative study of the cost effectiveness of instructional television and conventional classroom instruction in non-formal education. (Unpublished PhD thesis), University of Ibadan. Aliyu, Z., Tumblin, A., & Kato, G. (2016). Current therapy of sickle cell disease. Haematologica, 91, 7–10. PMID:16434364 Awoniyi, A. (1995). Determining language in education policy: The dilemma in Africa. In K. Owolabi (Ed.), Language in Nigeria, Essays in Honour of Ayo Bamgbose. Ibadan: Group Publishers. Ballas, S. K. (2009). The cost of health care for patients with sickle cell disease. American Journal of Hematology, 84(6), 320–322. doi:10.1002/ajh.21443 PMID:19415728 Barakat, P., Simon, K., Schwartz, L., & Radcliffe, J. (2016). Correlates of pain rating, Concordance for adolescents with sickle cell disease and their caregivers. Clinical Pain Journal, 24(5), 438–446. doi:10.1097/AJP.0b013e3181646038 PMID:18496309 Booth, C., Inusa, B., & Obaro, S. K. (2009). Infection in sickle cell disease: A review. International Journal of Infectious Diseases, 14(1). doi:10.1016/j.ijid.2009.03.010 PMID:19497774 Broughton, G., Brumfit, C., Flavell, R., Hill, P., & Pincas, A. (1978). Teaching English as a Foreign Language. London, UK: Routledge and Kegan Paul. Bunn, H. F., & Forget, B. F. (1977). Human hematology. Philadelphia, PA: WB Saunders. Cheyney, A. B. (1992). Teaching Reading Skills through the Newspaper. Newark, DE: International Reading Association. Egbokhare, F. O. (2004). Breaking Barriers: ICT, Language Policy and Development. Ibadan. Nigeria: The Postgraduate School University of Ibadan. Egbokhare, F. O., Oyetade, S. O., Eno-Abasi, U., & Ahmed, H. A. (2001) Language Clusters in Nigeria. CASAS Monograph Series, No. 12. Cape Town, South Africa.

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Elguero, E., Délicat-Loembet, L. M., Rougeron, V., Arnathau, C., Roche, B., Becquart, P., . . . Prugnolle, F. (2015). Malaria continues to select for sickle cell trait in Central Africa. Proceedings of the National Academy of Sciences of the United States of America, 112(22), 1-4. 10.1073/pnas.1505665112 Elmariah, H., Garrett, M. E., De Castro, L. M., Jonassaint, J. C., Ataga, K. I., Eckman, J. R., ... Telen, M. J. (2014). Factors associated with survival in a contemporary adult sickle cell disease cohort. American Journal of Hematology, 89(5), 530–535. doi:10.1002/ajh.23683 PMID:24478166 Emenyonu, P. T. (1982). Promoting the reading habit in Nigeria. In Literacy and Reading in Nigeria. Eyoh, H. N. (1986). Theatre of relevance: An interview with Ngugi Wa Thiong’o. African Theatre Review, 1(2), 110–114. Folarin, B. (2000). Foundation of Broadcasting. Ibadan: Atlantis Books.

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Gray, A. (2018). Observations from indigenous languages in Northern Territory, Australia. The Lancet. Global Health, 6(5), e496. doi:10.1016/S2214-109X(18)30075-5 PMID:29653621 Kaur, M., Dangi, C. B. S., & Singh, M. (2013). An overview on sickle cell disease profile. Asian Journal of Pharmaceutical and Clinical Research, 6(1), 25–37. Lasswell, H. (1948). Mass communication, popular taste and organised social actions. In L. Bryson (Ed.), The Communication of Ideas. New York: Institute for Religious and Social Studies. Lasswell, H. (1960). The structure and functions of communication in society. In W. Schramm (Ed.), Mass Communications. Urbana: Urbana University of Illinois Press. Lawal, B. (1989). An analytical study of the reading habits of some secondary students in Oyo Town. In R. A. Omojuwa & ... (Eds.), Literacy and Reading in Nigeria 4. Ohaeri, J. U., & Shokunbi, W. A. (2001). Attitudes and beliefs of relatives of patients with sickle cell disease. East African Medical Journal, 78(4), 180–186. doi:10.4314/eamj.v78i4.9058 PMID:12002066 Olakunle, O. S., Kenneth, E., Olalekan, A. W., & Adenike, O. B. (2014). Knowledge and attitude of secondary school students in Jos, Nigeria on sickle cell disorder. The Pan African Medical Journal, 15(1), 12–15. Omotade, O. O. (1995). Perception of sickle cell haemoglobinopathy among would be counselors. African Journal of Medicine and Medical Sciences, 24(2), 315–320. PMID:8886144 Osgood, C. E. (Ed.). (1954). Psycholinguistics: A survey of theory and research problem. Journal of Abnormal and Social Psychology, 49 (Oct.). Morton Prince Memorial Supplement. Oyero, O. (2007). Dynamics of indigenous languages in environmental communication. In I. Nwosu, & O. Soola (Eds.), Communication in global, ICTs and ecosystem perspectives- Insights from Nigeria. Enugu: Precisions Publishers.

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Oyero, O. S., Oyesomi, K. O, Abioye, T, Ajiboye E, & Kayode-Adedeji, K. T. (2018). Strategic \ communication for climate change awareness and behavioural change in Ado-Odo/Ota Local Government of Ogun State. African Population Studies, 32(1), (Supp.).Oyesomi, K, Okorie, N, Ahmadu, F., & Itsekor, V. (2014). Where is the African culture? Assessing the uniqueness of indigenous communication in galvanising women’s political participation at the local level. Journal of New Media and Mass Communication, 25, USA. pp. 1-8. Oyesomi, K. O., & Salawu, A. (2019). Assessing the Uniqueness of Indigenous Language in Advertising: Analysis of Figurative Language Used in Selected Telecommunication Yoruba Advertisement in Nigeria. Qualitative Report, 24(10), 2574–2591. Retrieved from https://nsuworks.nova.edu/tqr/vol24/iss10/12 Oyesomi, K. O, Salawu, A., & Olorunyomi, B. (2017). Indigenous Communication: Socio-Economic Characteristics Influencing Contemporary Female Political Participation. Journal of International Women Studies (JIWS), 18(4), pp. 164-181. Oyetunde, T. O., & Umolu, J. J. (1991). The current view of the reading process and its implications for English reading instruction in Nigeria: An afterword. Literacy and Reading in Nigeria 5.

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Palermo, T. M., Riley, C. A., & Mitchell, B. A. (2008). Daily functioning and quality of life in children with sickle cell disease pain: Relationship with family and neighborhood socioeconomic distress. The Journal of Pain: Official Journal of the American Pain Society, 9(9), 833–840. doi:10.1016/j. jpain.2008.04.002 PMID:18550443 Panepinto, J. A., Pajewski, N. M., Foerster, L. M., Sabnis, S., & Hoffmann, R. G. (2009). Impact of family income and sickle cell disease on the health-related quality of life of children. Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation, 18(1), 5–13. doi:10.100711136-008-9412-8 PMID:18989755 Piel, F. B., Hay, S. I., Gupta, S., Weatherall, D. J., & Williams, T. N. (2013). Global Burden of Sickle Cell Anaemia in Children under Five, 2010–2050: Modelling Based on Demographics, Excess Mortality, and Interventions. PLoS Medicine, 10(7). doi:10.1371/journal.pmed.1001484 PMID:23874164 Platt, O. S., Thorington, B. D., Brambilla, D. J., Milner, P. F., Rosse, W. F., Vichinsky, E., & Kinney, T. R. (1991). Pain in sickle cell disease – rates and risk factors. The New England Journal of Medicine, 325(1), 11–16. doi:10.1056/NEJM199107043250103 PMID:1710777 Prah, K. K. (1999). Workshop Working Paper on the Harmonization and Standardization of Nigerian Languages. Lagos. Prah, K. K. (2001). The idea of an African Renaissance, the languages of the Renaissance and the challenges of the 21st century. In E. Kurimoto (Ed.), JCAS Symposium Series 14. JCAS, Osaka, Japan. Quinn, C. T., Rogers, Z. R., & Buchanan, G. R. (2004). Survival of children with sickle cell disease. Blood, 103(11), 4023–4027. doi:10.1182/blood-2003-11-3758 PMID:14764527 Rees, D. C., Williams, T. N., & Gladwin, M. T. (2010). Sickle-cell disease. Lancet, 376(9757), 2018–2031. doi:10.1016/S0140-6736(10)61029-X PMID:21131035 Salawu, A. S. (2001) An evaluation of development communication content of Yoruba newspapers. (Unpublished PhD thesis), University of Ibadan. Salawu, A. S. (2004a). The Yoruba and their language newspapers: Origin, nature, problems, and prospects. Studies of Tribes and Tribals, 2(2), 97–104. doi:10.1080/0972639X.2004.11886508 Salawu, A. S. (2004b) Social status as a factor for the readership of Yoruba newspapers in Nigeria. Nordic Journal of African Studies 13(2), pp. 200-215.

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Salawu, A. S. (2004c). Contents and styles of Alaroye news publications. In O. Ndimele (Ed.), Language and Culture in Nigeria: A Festschrift for Okon Essien. Aba: NINLAN. Salawu, A. S. (2004d). A readership survey of Yoruba newspapers for development messages. Journal of Social Sciences, 8(3), 197–202. doi:10.1080/09718923.2004.11892414 Schramm, W. (Ed.). (1954). How communication works. In the Process and Effects of Mass Communication (Ch. I). Urbana: University of IIIinois Press. Severin, W. J., & Tankard, J. W. Jr. (1992). Communication Theories: Origins, Methods and Uses in the Mass Media. London, UK: Longman.

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Siddiqui, S., Schunk, K., Batista, M., Adames, F., Ayala, P., Stix, B., ... Green, N. S. (2012). Awareness of sickle cell among of reproductive age: Dominicans and African Americans in northern Manhattan. Journal of Urban Health, 89(1), 53–58. doi:10.100711524-011-9618-x PMID:22009200 Smith, M. T. (2015). Factors That Contribute To the Knowledge, Health Beliefs, Attitudes, and Behaviors Regarding Sickle Cell Disorder among College Students. Heritage Press. The Fourth Estate. (2000). No. 9., Nov./Dec. Lagos: IJC/JODER. Uche, L. U. (1989). Mass Media, People, and Politics in Nigeria. New Delhi, India: Concept Publishing. UNESCO. (1974). Television traffic _ a one-way street? Reports and Papers on Mass Communication, No. 70. Paris, France: UNESCO. Webster, P. (2018). Language barriers restricting access to health care for Indigenous populations. Canadian Medical Association Journal, 190(24), E754–E755. doi:10.1503/cmaj.109-5613 PMID:29914917 Westley, B. H., & MacLean, M. (1957). A conceptual model for communication research. Journalism Quarterly, 34, 31-38.

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This research was previously published in Emerging Trends in Indigenous Language Media, Communication, Gender, and Health; pages 97-122, copyright year 2020 by Medical Information Science Reference (an imprint of IGI Global).

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Chapter 5

Sexism in Medical Communication Yasmin Grant Imperial College Healthcare NHS Trust, UK

ABSTRACT Communication is one of the most essential skills of the medical profession, however, it is a tool through which sexism and gender discrimination are promoted and reproduced. There is often the perception in medicine and surgery that gender inequity centres on lifestyle, family responsibilities, and childcare issues. However, this chapter highlights that deeply engrained biases in medical communication still exist, and are perpetrated by institutions and individuals, women included. Awareness of gendered language must be raised and highlighted in order to make a change. It is achievable to speak in gender-neutral ways that are inclusive and precise as to not conjure biased attitudes towards women in medicine. Social change must be pursued at the level of the institution, the cultural structure, and at the interactional level of gender.

INTRODUCTION

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Communication is an essential component of medical practice and occurs between doctors, patients and other healthcare professionals. Awareness of its importance has led to incorporation of communication skills assessments as part of medical school curriculums. However, gender bias is one of the obstacles to equity in medical career progression for females and has been shown to be reinforced through gendersubordinating language.

BACKGROUND The study of gendered language in sociolinguistics is thought to have commenced in the Language and Woman’s Place, a paper written by Robin Lakoff in 1973. In this text, Lakoff (1973) states: “Our use of language embodies attitudes as well as referential meanings. The marginality and powerlessness of women DOI: 10.4018/978-1-6684-2414-8.ch005

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 Sexism in Medical Communication

is reflected in both ways women are expected to speak, and the ways in which women are spoken of. In appropriate women’s speech, strong expression of feeling is avoided (and) expression of uncertainty is favoured. The personal identity of women thus is linguistically submerged; the language works against treatment of women, as serious persons with individual views.” Lakoff’s paper was an attempt to provide diagnostic evidence from language use for the inequity between the roles of men and women that had been claimed to exist in society. Nearly 45 years on, women in medicine can relate and identify to this sociological phenomena through the use of language in the workplace. Language and communication is a very powerful system that offers clinicians and patients beliefs in which they can present their attitude to gender.

MAIN FOCUS OF THE CHAPTER Types of Sexism in Medical Communication History of Gendered Language Discrimination of women through language has been present through mechanisms that are deeply embedded in Western culture to sever them from power. The first recorded example of gender inequity through language is at the start of Homer’s Odyssey, written almost 3000 years ago. Throughout the epic poem, Telemachus, the son of Odyssey and Penelope is growing up and maturing from boy to man. This is best described by Mary Beard, a well-known British classicist, in her reflection on the gender agenda in Women & Power:

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“The process starts in the first book of the poem when Penelope comes down from her private quarters into the great hall of the palace to find a bard performing to throngs of her suitors; he is singing about the difficulties the greek heroes are having in reaching home. She isn’t amused, and in front of everyone she asks him to choose another, happier number. At which point young Telemachus intervenes: ‘Mother’ he says, ‘go back into your quarters, and take up your own work, the loom and the distaff… speech will be the business of men, all men, and of me most of all; for mine is the power in this household.’ And off she goes, back upstairs.” Beard (2017) comments further upon the significance of the actual words Telemachus uses “When he says speech is ‘men’s business, the word is muthos – not in the sense that it has come down to us of ‘myth’. In Homeric Greek it signals authoritative public speech, not the kind of chatting, prattling or gossip that anyone – women included, or especially women – could do.” (p7). This relationship between classic Homeric moment of silencing a women and some of the ways in which women’s voices in contemporary medicine are not publicly heard is interesting. Beard (2017) states “Telemachus outburst was just the first case in a long line of largely successful attempts stretching throughout Greek and Roman antiquity, not only to exclude women from public speech but also to parade that exclusion.” (p9). Repeated stress throughout ancient literature on the authority of the male voice in contrast to the female was placed. Beard (2017) postulates that this ‘muteness’ was not just a reflection of women’s general disempowerment throughout the classical world such as the absence of the right to vote and limited legal and economic freedom. Moreover, it was a more active and loaded exclusion of women’ voices in that public speaking 71

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 Sexism in Medical Communication

and oratory were merely things that ancient women didn’t do: they were exclusive practices and skills that defined masculinity as a gender. Beard adds ‘public speech was a – if not the – defining attribute of maleness. Or to quote a well-known Roman slogan, the elite male citizen could be summed up as vir bonus dicendi peritus, ‘a good man, skilled in speaking’. A woman speaking in public, was in most circumstances, by definition not a woman’. (p17) This can be represented in modern day medicine, as studies have shown that women are less likely to be invited to give grand rounds in hospital, particularly as an outside speaker (Boiko, 2017). Although these accounts may be distant in time, this representation is not a peculiar ideology in an alienated land. The classical tradition of gendered language has provided us with a powerful template for thinking about oratory in positions of privilege as a medical professional and is an important part of that debate of gender inequity in medicine.

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The Development of Sociolinguistics It is clear that sexism in communication in medicine is also linked to social and political history of feminism and changing attitudes to women. A chronological summary of these movements is first-wave feminism, second-wave feminism and post-modern feminism. First-wave feminism is the movement that focused on getting the right for women to vote, to have property rights and the right to an education. Second-wave feminism is the movement that focused on women’s roles and rights within the workplace and in reproductive, sexuality and family issues. Post-modern feminism is the movement that covers different views and beliefs about women’s rights and sees women as individuals as well as part of a group. Within post-modern feminism in sociolinguistics, the deficit approach sees male language as the norm and women’s language is viewed as deficient to men (Titjen, 2018). Two other ‘Ds’ define and judge women’s language against that used by men in sociolinguistics, which the authors will explore more fully in this chapter. Dominance theory of language is the belief that the language differences between men and women can be explained by the hierarchical dominances of men in society. Difference theory of language is the belief that men and women have innate differences in the style and function of their speech and writing. Of late, the spotlight has moved to focus on how society influences the language we use and whether individuals ‘perform’ our gender by demonstrating lexicon and ways of speaking associated with being male or female in a social constructivist approach. (Titjen, 2018) As discussed previously, Lakoff (1973) adopted an observational approach to linguistic focus on gender in ‘Language and Women’s Place’ looking at a very specific group of women – American, white, middle class and educated – but interpreted her findings as relating to all women. Lakoff labelled women’s spoken language as more polite with absences of expressions of strong statements, in an almost complete dissimilarity from men’s language. She believed that women’s prejudiced the case against themselves by use of language, highlighting their own uncertainty and powerlessness suggestive of inferiority to men. For example, she postulated that women used ‘empty’ adjectives, a questioning intonating on statements and hedges in their spoken interactions. The use of these choices was all declared to be undermining the authority of women and the content of their speech.

Non-Reciprocal Address This is of note as perhaps instinctually or due to the way that society has traditionally received females, women doctors may shy away from their title. In settings where professional titles convey expertise and 72

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 Sexism in Medical Communication

competence, failure to acknowledge the title may influence the perceived expertise and authority of the referenced individual (Files, 2017). In an NY Times article, Dr Julia Baird commented upon the criticism and taunting academics have received for using their titles, while many men who had not received such criticism were baffled (Baird, 2018). Ideally in a professional setting, occupational/professional titles and informal names should be used equally among men and women. Indeed, the manner in which individuals refer to a fellow professional may influence a linguistic expectancy bias, whereby subtle systematic variations in language, such as the use of a professional title or not, can reinforce a lack of equity in the workplace. In fact, a 2017 analysis of introductions of speakers at medical gatherings found that about half of the time a man introduced a woman to the group, he did not use her title, but used it for men more than 70% of the time (Files, 2017). Failure to use a woman’s professional title may be a subtle reinforcement that women are of lower status and may be one of the factors contributing to the consistent finding that female physicians are paid less than their male counterparts and more likely to pursue career tracks with historically fewer career opportunities for academic promotion (Carnes et al., 2007; Jagsi et al., 2013; Jena et al., 2016; Mayer et al., 2014; Wright, 2007). Within popular literature, there are also several anecdotal examples of professional women in medical spheres encountering non-reciprocal address practices, occurring in mixed-gender, professional workplace interaction (Berry, 2014; Grady, 2014; Post, 2015). This echoes Lakoff’s (1973) findings of asymmetry used in labels for men and women, creating a power imbalance through the unequal way they address each other. Moreover, at a recent Women in Medicine summit hosted at the University of Calgary, a speaker found that nearly every women in the room had been unprofessionally introduced when speaking at an event – excluding professional titles, roles and expertise (Brown & Ruzycki, 2018). Within professional environments such as hospital-based practice, individuals may assume shared norms of a particular linguistic network or community of practice. Therefore, differences in formality can signal intentional, subconscious and/or institutionalised behaviour (Morand, 1996). At times, our patients can also project their own biases due to historical lack of females in medical and leadership roles. Many of us will be familiar with ‘politely correcting our patients when we are mistaken for a nurse, which may chip away at our self-identity and lead us to question whether we really belong ‘in the club’. Professor Claire Hopkins of Ear Nose & Throat Surgery in London recounts; ‘If I had a pound for every time a patient had asked me (after I had examined the patient, explained the proposed treatment and gone through the consent process for surgery) ‘So, will I ever get the meet the Professor Hopkins – is he here?’, I would have retired a long time ago.’ When undertaking rounds, if there is a man on the team (no matter how junior), the patient will often assume that he is in charge and address questions directly to him.’ (Hopkins, 2018). Lakoff (1973) expands upon these language discrepancies stating ‘the ultimate effect of these discrepancies is that women are systematically denied access to power, on the grounds that they are not capable of holding it as demonstrated by their linguistic behaviour’. It could be argued that this reflection written in the 1970’s is no longer relevant to today’s medical world with the number of women outnumbering men in medical school recruitment. However, it appears that the same issues of voice and gender are still present in medical and surgical communities. In the medical profession, choice of word and forms of address continue reflect conscious or unconscious assumptions about gender roles (Kaatz, Magua, Zimmerman, & Carnes, 2015; Siegling, Eskritt, & Delaney, 2014). In an October 2018 Royal College of Surgeons of England Bulletin article, Professor Claire Hopkins of Ear, Nose & Throat Surgery comments upon the unconscious bias in address received whilst attending an international conference as one of the keynote speakers: ‘On the first morning of the meeting, I sat at a conference table 73

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 Sexism in Medical Communication

with one of the three invited speakers (a man), and I was introduced to others at the table as ‘Professor Claire Hopkins, ENT surgeon from London’ and identified as one of the guest speakers. I had been sitting next to a senior figure in ENT for most of the morning and he asked where my husband had gone. I was confused – I had left him back home in London looking after the kids. Then the penny dropped; I explained that I was actually attending as a speaker. ‘I’m so sorry, I just assumed that as you were sitting next to X, you must be his wife’ came the reply. There must have been about 100 other women in the room, many of whom were also sitting next to a man. I’m pretty sure that the vast majority of these women were ENT surgeons. ‘So, are you an allergist?’ followed. Once the assumption that my role as a wife had been dismissed, my colleague still couldn’t entertain the possibility that a woman attending a conference on ENT surgery was most likely to be a surgeon’ (Hopkins, 2018). Classicist Mary Beard believes these attitudes, assumptions and prejudices are hardwired into society: not neurologically or genetically but through our culture, language and millennia of our history. It is time to adopt a practice of self-awareness to uncover paradoxical conflicts and pertinent questions about the construction of women’s voices in medicine. (Beard, 2017)

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Gendered Pronouns and Forms In Dale Spender’s work entitled Man Made Language (1980), language is portrayed as male-centric, encompassing the historical dominance of men in public and private life. Spender’s evidence for this is the language rules incorporated in the sixteenth to the eighteenth century by English grammarians. Syntactical regulations have been built in a way that feminine terms derive from the corresponding masculine forms. These rules embodied the ideas that the male pronoun should always come before the female one and the male term should be the generic one used to refer to all people regardless of gender and used as the ‘norm’. This perpetuates gender inequity as the influence of language on thought is obligatory or at least habitual; thought is always, or under most circumstances, guided by language’ (Harris, 2017). The first ‘rule’ centres on the custom in English that males tend to be mentioned first. In social terms, perhaps at a conference, convention says that the speaker introduces ‘Mr’ and ‘Miss’ in that order. Even now, if you search for address writing advice on the internet, it will offer this version as traditional (and by implication correct) form of English social etiquette. The second ‘rule’ represents that the male term should be used to represent all human beings regardless of their gender, for example ‘That’s one small step for man, one giant step for mankind.’ (US astronaut Neil Armstrong’s speech on landing on the moon in 1969). The masculine nouns and pronouns are often used with a generic function to refer to both sexes (Titjen, 2018). The result is that these lexical forms have compromising effects of making women absent from mental representations, causing readers and speakers to imagine men (Menegatti, 2017). Language therefore has a powerful effect on molding individuals attitudes toward gender and occupation, which has real and measurable consequences for individuals within medicine and society at large. However, this type of grammatical formatting relating to gender is specific to certain languages. It does not frequent in other European languages such as Hungarian or Turkish (Titjen, 2018). Interestingly, there is a substantial and increasing body of evidence suggesting that societies with gendered language display deeper gender inequality than societies with neutral language. For example, a study of Russian/ Spanish speakers conversing in languages with inherent has grammatical gender classifications for objects as masculine/feminine, a higher degree of sexism was displayed compared to English-speaking counterparts. (Thompson, 2014). Moreover, a study by Prewitt-Freilino et al. (2012) illustrated that nations where >70% spoke a gendered language ranked less on Global Gender Gap Index which ‘benchmarks 74

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 Sexism in Medical Communication

national gender gaps on economic, political, education- and health-based criteria’ and further economic subscales. This demonstrates that linguistic relativity shapes cultural norms and can reinforce inequality.

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Gender Specific Compounding One way to signify gender lexically is through gender specific compounding. In compounding, two words are put together commonly without being ‘male/man’ or ‘female/woman’. Here two words are put together, most commonly without being ‘male/man’ or ‘female/woman’. It could be suggested that the highlighting of gender may signal circumstances or roles where women are either inferior to their male counterpart, or it is not the norm in society for women to perform this role. It is anecdotally common in medicine that job titles like ‘doctor’ or ‘surgeon might often be preceded by ‘lady’, therein identifying this role as performed mainly by men (Titjen, 2018). In 2007, Oxford language professor Deborah Cameron published her article ‘What Language Barrier?’ in The Guardian, exploring the ‘difference model’ previously mentioned which is still a widespread view (Cameron, 2007). Cameron discusses Simon Baron-Cohen’s argument in his book the Essential Difference (2003, 287) that people with a female brain ‘make for the most wonderful counsellors, primary school teachers, nurses, carers, therapists, social workers, mediators, group facilitators or personnel staff’. This, he says, is because they have empathy, an attribute he clearly associates with women. It therefore must be questioned by ‘doctor’ or ‘surgeon’ is so commonly prefixed with ‘lady’ in anecdotal circumstances in the field of medicine, a vocation associating with caring and compassion. Lakoff (1973, 59-60) wittily recounts ‘To say lady doctor is to be very condescending, it constitutes an insult. For men, there is no such dichotomy. Garbage man or salesman is the only possibility, never garbage gentleman. And of course, since in the professions the male is unmarked, we never have *man (male) doctor.” Even Professor Claire Hopkins (2018) of Ear, Nose & Throat surgery states that her own son once requested to be seen by a ‘proper doctor’ because ‘Mummy you’re a girl so you must be a nurse’ (RCS). Moreover, Dr Sherene Shalhub (2018), a vascular surgeon argues ‘the qualifier “female” for a woman who is a surgeon reduces her status. None of my male colleagues aspire to be a male surgeon – everyone simply aspires to be a surgeon. If you are not convinced that using the word “female” before surgeon connotes “less than”, consider how language shapes our gender biases. When we refer to a surgeon as a “female surgeon”, we are not equating her to “surgeon” – even if only on a subconscious level. Rather, the implication is that she is inferior to other surgeons, who are by default men’. Gender-specific compounding can also be used to mock or make fun of. The well-known colloquial term ‘man flu’ is a key example that foregrounds the stereotype of men exaggerating any illness they come down with (Titjen, 2018). However, it is not uncommon for women in the surgical field to receive comments whilst operating such as ‘that was a bit of girly cut’ when making a conservative incision. Furthermore, it reproduces the content of gender stereotypes according to which women should only display collaborative traits such as warmth, passivity and generosity (Lakoff, 1973). Ideas can also be associated about masculine and feminine qualities with particular words. Corpus linguistics as a research tool has allowed researchers to identify repeated patterns between real-life language examples. In a small-scale study of words, feminine ideas were associated with words such as ‘nurturing, ‘patience’, ‘tenderness’ and masculine ideas were associated with words such as ‘logic’, ‘focus’, ‘control’ (Beard, 2017). Due to this ambivalence, prejudices against women therefore differ from prejudice against other groups and may appear as implicit and unintentional. Formal recommendations often commend female physicians

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 Sexism in Medical Communication

for ‘being part of a team’, highlight women’s teaching abilities, and refer to ‘her training’. Comparatively, male physicians are referenced for ‘decisiveness’, their research and their ‘career’ (Chelsea, 2017). Wood & Eagly (2002) highlighted that favourable collegiate traits describing women are also traits of defense that place a person in a subordinate position (Eagly, 1994). Two forms of sexual prejudice were further elaborated by Glicke and Fiske (1996); hostile and subjectively benevolent. Hostile sexism is demonstrated by a negative interpretation in order to justify male social power and traditional gender roles. Benevolent sexism is more understated, as it depicts women as gentle, in need of men’s protection, therefore justifying male superiority and women’s subordination. Thus, the favourable traits used to describe women may perpetuate their lower status and strengthen gender inequity (Eagly, 1987). By using these subtle linguistic biases and a different set of characteristics to depict valued masculine (ambitious, assertive) and female (warm, collaborative) behaviours, we predispose ‘female surgeons’ to face conflicts between their gender roles and professional advancement (Chelsea, 2017). In an article from the Daily Telegraph, British Journalist Radhika Sanghani (2017) listed 25 words she believed were only ever applied to women. She cites examples of their use in political contexts, campaigns by celebrities and research done by Fortune magazine including abrasive, hormonal, and bolshy. It is worthwhile to reflect upon the conclusions that can be drawn about societal views of women’s characteristics and the expression of attitudes to women’s traits in medicine through language. In a qualitative study of residents in the US who left their general surgery training programs, the importance of gendered language was emphasised. Former residents recalled being described as ‘weak’ amidst a culture in surgery where ‘strength’ is personified as being able to handle anything under any circumstances. In this study a former surgical resident described this as “You cannot be seen as weak in a surgery residency, especially as a woman because they will chew you up and spit you out”. (Bongiovanni et al., 2015).

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Gender Stereotypes in Language Again, historical influences can insidiously play a role in this discourse. Deborah Cameron in her book Verbal Hygiene (Cameron, 1995) explained why women’s move from domestic roles to the workplace from the 1970s onwards caused a stir. There were long-standing typecasts about the desirable feminine qualities of women’s speech and the problem in the workplace, she identified that women’s logical and lexical semantics were seen as too feminine to be given due regard. She accounted for this by the fact that through the decades and centuries before, women had not been socialised into speaking in public contexts. She surveyed some of the advice given to women using the myth of Pygmalion – and its dramatic presentation in George Bernard Shaw’s play to explore the ways that people seek to ‘improve’ women. (in the play the main character Professor Higgins, who is a phonetician, bets that he can turn an ordinary London flower girl into a ‘lady’ by teaching her to speak “properly”). Similarities can be drawn again to sexism in medical mentorship. Shannon Ruzycki in a 2018 article entitled ‘The idea that medicine is above sexism is false – and destructive anecdotal comments received by a senior resident who was told she was clinically very good but there was ‘just something he couldn’t put his finger on’ about her that made her ‘rough around the edges’. (Brown & Ruzycki, 2018) However, our understanding of informal collegial interactions of women in medicine remain poorly understood because there is a paucity of research examining their significance. Nevertheless, it has been shown that the evolution of productive professional relationships in the healthcare sphere can positively affect professional development and improve overall employment satisfaction (Sullivan et al., 2012). Furthermore among residents and junior faculty, successful mentorship is associated with improved 76

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 Sexism in Medical Communication

academic productivity and more confidence for clinical practice, which may reduce the rate of attrition (Palepu et al., 1998; Lis, Wood, Petkova & Shatkin, 2009; McCord et al., 2009). It follows that the lexical choices of everyday communication reflect the asymmetries of power and status in favour of males, which are attached to their occupational roles. It could be interpreted that women in medicine are still perceived as belonging outside of leadership positions. The system may genuinely want them to get to the inside of the ‘club’ or may, by various often unconscious biases, cast women as impostors when they make it. Professor Hopkins recounts attending the Royal College of Surgeons after passing her Membership of the Royal College of Surgeons (MRCS) exam; “I remember feeling great pride in walking up the staircase, past all the paintings of former presidents, wondering just for a moment whether I’d ever get my portrait hanging there. As we reached the top of the staircase, the president reached out his hand, extended it to my husband (who was dressed in a pinstriped suit) and congratulated him. His wife shook my hand and said ‘You must be very proud of him, dear.’ (Hopkins, 2018). Gargiulo et al., female sex was associated with the perception of surgery as an ‘old boys club’. (Gargiulo, Hyman & Herbert, 2006). Moreover, Saalwachter et al found that female surgical residents were more likely to concur with the statement “female residents are treated in an inferior manner compared with male residents”. (Saalwachter, Freischlag, Sawyer & Sanfey, 2005). Stereotypes about genders are belief systems that produce expectations about the attributes of men and women in terms of their role and behaviour in society. Historically, male and females have held different social roles (Eagly, Wood, & Diekman, 2000) and women were not admitted to medical school until the 19th century (Bellini et al., 2019). Outside of the medical context, men have been more likely to be involved in tasks that require strength and the possibility of being away from the home, whereas women have been more likely to engage in homemaking and family responsibilities such as raising children. This results in the perception of males to be agentic, specifically active, independent and firm, whereas women are expected to communal, namely warm, kind and benevolent. It can be deduced that the content of gender stereotypes has been established by the characteristics and activities required by individuals of each sex in their sex-typical occupations and family roles: Women are expected to engage in a feminine gender role that reflects communal qualities but not agentic ones (Wood & Eagly, 2002).

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Sexism in Written Communication Of note, written forms of communication in medicine also demonstrate clear gender bias. A study performed in 2003 examined over 3000 letters of recommendation for medical faculty at a large American medical school in the mid-1990s were found to systematically differ between male and female applicants. Using methods from corpus and discourse analysis, discrepancies in the percentages with doubt raisers (an extended category of negative language, often associated with apparent commendation, and in frequency of mention of status terms. Moreover, the most common semantically grouped possessive phrases referring to female and male applicants (‘her teaching’, ‘his research’) reinforced gender schema that tended to portray women as teachers and students, and men as researchers and professionals (Trix & Psenka, 2004). Interestingly, a BMJ article entitled ‘sexism in medical writing’ recounted a reader who wrote to complain about a published article that used he for consultants and she for secretaries. However, by no means are all consultants men and all secretaries female. The staff editor, Sue Burkhart, provided further examples of sexist written language published in the medical sphere including “Research scientists often neglect their wives and children” and “It’s the great secret of doctors, known only to their wives… that most things get better by themselves”. (Burkhart,1987). In the attempt to neutralise 77

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 Sexism in Medical Communication

gender biased language, Burkhart offers advice given in the American Psychological Association’s Publication Manual: “Help the reader focus on the content of your paper by avoiding language that may cause irritation, flights of thought, or even momentary interruptions… [such as] linguistic devices and constructions that might imply sexual, ethnic or other kinds of bias… Language that reinforces sexism can spring from subtle errors in research design, inaccurate interpretation or imprecise word choices.” (as cited in Burkhart, 1987).

Gendered Metaphors Moreover, there must be cognisance that the use of shared metaphors of female access to medicine, for example ‘pull their weight like a man’, underlines female exteriority (Bellini et al., 2019). An audit published in 1992 of sex bias in the BMJ identified all medical staffing issues described as problems of medical ‘manpower’. It further comments upon the strongly argued view that sexist language tends to ascribe more in power to men than women and contributes to inequalities of opportunity between the sexes (Usherwood, 1992). Women in surgery are seen as breaking down barriers, or alternatively as taking something to which they are not quite entitled and ‘it is through language that we [women] come to know our subordinate place in the world’ (Cameron, 1985). Accounts in a women’s surgery working group stated ‘Patients are often shocked that I will be doing their operation, and I have led ward rounds where the patients have talked to my tall male (foundation doctor) and not me’. Another respondent reported ‘Patients are extraordinarily sexist for example, patients have walked into a consulting room and said to me ‘I thought I would be seeing a doctor at least’ before I had time to introduce myself. I am 34 and been a doctor for 10 years’. (Bellini et al., 2019). This gender bias is also reflected in other professional jobs as captured by a headline in The Times in early 2017. Above an article reporting on the possibility that women might soon gain the positions of the Metropolitan Police commissioner, chair of the BBC Unitary Board and bishop of London, it read: ‘Women Prepare for a Power Grab in Church, Police and BBC’ (Simpson & Zeffman, 2017). Interestingly, it was only Cressida Dick, the commissioner of the Met, that was appointed to a leadership position. Medical professionals must create the change needed to look a lot more carefully at our cultural assumptions and ingrained social prejudices against women’s places in this profession.

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Gendered Style of Language The aforementioned dominance approach took place within the historical and political context of secondwave feminism, which had a central goal of eradicating gender inequality. This approach understands men as considered to be positioned above women because of their social and political ability to achieve their purpose. From a language perspective, men were seen as using syntax as a means of reinforcing or maintaining their power in conversations, and women were viewed as asserting their lack of power through their language choices (Titjen, 2018). Differences in interpersonal language style of women compared with men are well documented outside of medicine. One of the most famous of studies was Don Zimmerman’s and Candace West’s(1987) college campus study, which found that men were responsible for 96% of the interruptions in conversations occurring between men and women. Men’s dominance seems from these to lie in their conversational management – i.e. speaking more, having longer turns and, in conversations with women, being interrupted less and interrupting more. Dale Spender (1980), in Man Made Language, drew further regard to this verbal dominance by interpreting women’s silence 78

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 Sexism in Medical Communication

as a form of oppression. However, linguists also saw other semantic rules as asserting dominance, which were more nuanced than men interrupting women in conversation. Of note, Deborah Tannen (1992) was one of the most influential linguistic academics whose work represented the difference view. She argued that male-female conversation could be viewed as a form of miscommunication in which women were more inclined to be obliging in conversation, and men as more competitive. Tannen coined the term ‘genderlect’ to describe the different language use of men and women. Judith Baxter’s (2014) concept of double-voicing explores further the concept of gender identity in the workplace. It is suggested that women are more conscious than men that the people they are interacting with may have differing agendas and accordingly alter their own language to reflect this language. Real-life examples from her research include ‘I realise I am being over-simplistic as usual but….’ and ‘I am no expert like the rest of you but….’. Baxter expands by offering categories to describe the various forms that double-voicing which might take place including anticipatory and mitigating. With anticipatory double-voicing a speaker demonstrates in their language that they have anticipated the response others and attempts to dilute or deflect the criticism they expect. With mitigating double-voicing an individual efforts to build solidarity but may come across as hesitant or defensive. Baxter’s workplace research shows that women are more prone to double-voice than their male counterparts and she concludes that women use this as a method of gaining approval. However, positive effects of female communication have been demonstrated in patient-physician relationships. A meta-analysis of physician gender effects in medical communication in 2002 found that female physicians were found to engage in communication relating to the broader realm of psychosocial issues, greater use of emotional language and more active enlistment of patient input. As female physicians ask more psychosocial questions, it may be that this communication approach promotes higher disclosure of both psychosocial and biomedical information (Roter, Hall, & Aoki, 2002). Moreover, an analysis by Henderson and Weisman of the Commonwealth Survey of patient-reported screening and counseling services concluded that female physicians provided more preventive counseling to both their male and female patients (Henderson & Weisman, 2001). This represents a positive benefit in the fostering of the patient-clinician relationship and medical dialogue (Hall, Irish, Roter, Ehrlich, & Miller, 1994). Lastly, bias is not at the discretion of men alone. Women also display gender biases towards other women, a phenomenon called internalised misogyny, whilst holding other women to a double standard. This discrimination leads to further isolation of women in leadership positions (Shalhub, 2018). Gender inequity also affects our ability to work with other healthcare professionals. Dr Andrea Christopher, a physician in Boise, Idaho noted that nurses were more likely to assist male colleagues saying, ‘I would put in orders, and the male residents would put in orders, and theirs would be done and mine not’ (Badham, 2018). Moreover, a study in a Canadian hospital found that in simulated settings nurses were more willing to defer to male physicians and were more hostile to female clinicians (Zelek & Phillips, 2003). The insidious consequence is that people perceive gender bias in language from women and men as normative and enact gender discrimination by simply following communication rules (Ng, 2007). However, it is time to shift our narrative from the pervasive gendered language in professional conversation, casual discourse and social media.

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 Sexism in Medical Communication

SOLUTIONS AND RECOMMENDATIONS More recently, sociolinguistics distanced themselves from the ‘three Ds’ of gender study (deficit, dominance and difference) by taking a different approach of social constructivism which acknowledges the importance of individual differences amongst men and women. This had a profound influence of ways of thinking about gender in contemporary linguistics, rather than simply setting the genders against each other. One of the key research focuses has been on how people within groups use language, calling upon social network theory and the concept of communities of practice. This approach focuses on an interpreted identity that is socially constructed by the shared nature of our interactions which are not fixed. The medical workplace is therefore an important social environment to explore gender. (Titjen, 2018).

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Language Neutralization Lesley Milroy characterised a theory called ‘a web of ties’ in which a social network is formed by formal and informal relationships, which can be applied to medical practice, Patterns of linguistic use emerge and evolve characterising the speech behaviour of this group as highlighted above. Jean Lave’s and Etienne Wenger’s (1991) community of practice model described how people come together for a particular purpose or passion to establish ways of doing things and ways of interacting to achieve their shared purpose as seen in world of medicine. Wenger further developed this idea into three crucial areas of mutual engagement, a joint negotiated enterprise and a shared repertoire (Wenger, 2000). From a gender point of view, other researchers such as Penelope Eckhert and Sally McConnel-Ginet (1992) took the idea of a community of practice to investigate how the language-gender interface is produced and reproduced within different communities. They suggested that the individuals belong to multiple communities of practice but that speakers develop vernacular patterns as they engage in activity in various communities that they are a part of. However, they argued that our gender may also inform which groups we become members of as communities of practice also produce gender arrangements and gender language differentiation. They also proposed that participation levels with the community of practice might be impacted by the different roles and status given to women and men within the group. As women have moved into medicine and occupational choices have grown within the profession, it is clear that language is adapting however perhaps not at the necessary rate. There is still more scope for change in terms of the words that we associated with gender and the meanings and beliefs behind these. The fact that there have not significant shifts in usage may suggest that changes to social reality are not reflected in the language we use. There needs to be more awareness of the production of sex biased language behaviours in communities of practice, with shifts to ensure there is no longer a male superiority whilst recognising the modern complexities of gender identity. This is supported by sociolinguist Judith Butler’s book (2006) Gender Trouble which raises the argument of gender as a performance. She argues that we are constantly engaged in constructing gender. Here, Butler declares that gender is something we do and is not what we are. Professional societies should enact a policy of ensuring gender neutral language is used in all communications in the wider health sector in all nations to ensure masculine forms are removed altogether.

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 Sexism in Medical Communication

Gender Equality Charters Medicine has now been a career path for women in the western world for over a century, with women entering the profession in equal numbers for many years. However, many women fail to progress and earn the same recognition or renumeration as their male counterparts in the US (Poorman, 2018). A study in 2016 found that only 16% of deans and interim deans are women in 136 US medical schools are female (Schor, 2018). An Association of American Medical Colleges report in 2013-2014 found that women in academic medicine have received only 30% of new tenured positions. The slowly shrinking gender disparity of women in leadership positions in medicine is held up as a marker of success however, more emphasis is required to be placed on linguistic habits. As stated by Dr Julie Silver, associate professor at Harvard Medical School, “medicine should be leading the way” in gender equity (Poorman, 2018). The Athena SWAN is one such initiative which has tackled the unequal representation of women in science, technology, medicine and mathematics (STEMM). It aims to address the high loss rate of women in science and to foster commitment and action from all levels of an organisation to address gender inequalities. The charter received a significant boost in 2011 when the UK Chief Medical Officer, Professor Dame Sally Davies, announced that the National Institute for Health Research (NIHR) would only shortlist medical schools for Biomedical Research Centre (BRC) and Unit (BRU) funding if the associate academic school holds a Silver Athena SWAN award. This was later expanded to include Patient Safety Research Centre funding in 2012. In 2016, in the first round of funding to be awarded since the Chief Medical Officer’s announcement, the Department of Health awarded £816 million to 20 BRC’s, all of which are associated with a Silver Athena SWAN award-holding academic unit (Department of Health and Social Care UK, 2016). In a recent event attended by the author at the Imperial College Department of Surgery and Cancer annual Athena Swan lecture, Professor Dame Sally Davies commented on the extreme resistance received from senior male academics in high institutions in the UK to the introduction of this charter. Similar international health research funding associations and bodies should aspire to support equality for women in science and release action plans to ensure the inclusion of women in science tackling attitudes and cultures across the organisation. However, diversity at management and policy-making levels may be required to institute this change.

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Self-Awareness and Mentorship Thus modifications to address biases in medical educators that facilitate collegial professional relationships which inherently involve language behaviours should be encouraged. Examples may include the creation of formalized mentorship programs for junior registrars/residents and consultants/attendings. Pairing residents with a mentor of shared female sex may promote an environment of comfort and assist in the identification of residents’ professional and personal needs. Establishing this program may be difficult for female or minority residents given the relative paucity of female and minority faculty in surgery. Among junior and senior residents, mentorship may provide an opportunity to receive experience-based advice in a non-threatening setting. In addition, scheduled social activities are suggested. Such informal events assist in neutralising the power differential among registrars of different sexes and between residents and attendings. Speciality-specific team events at the conclusion of resident rotations may develop working relationships and promote a cohesive team dynamic. (Sullivan et al., 2012). Female leaders such as Dr Julie Silver and Dr Luanne Thorndyke at the University of Massachusetts Medical School are tackling discrimination by promoting and mentoring women and minorities in medicine. This requires institu81

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 Sexism in Medical Communication

tional support and Massachussets Medical School now have a female faculty of 26%, compared to 17% at Harvard Medical School (Poorman, 2018). A national initiative by the Royal College of Surgeons of England is also dedicated to encouraging and enabling women to fulfill their surgical career ambitions to facilitate changes in attitudes and practices. The collaboration also endeavors to ensure female surgeons are represented positively in the media and to as wide an audience as possible (Women in Surgery, n.d.). It has been demonstrated that biases find their way into our language. The language we speak and hear physically alters our neural connections including the areas related to how we experience reality and link words to ideas. As such, our language not only articulates our world-view, it also influences our perception of the world. Because culture is grounded in language, discerning our language can affect our culture. Although the use of gender-fair linguistic expressions can effectively prevent these negative consequences and promote gender equality, there are even more implicit forms of gender bias in language that are difficult to suppress. By choosing terms of abstraction, people can affect the designations of the receiver in a way that is consistent with their stereotypical beliefs. Linguistic abstraction, thus, is a resource used to represent women in a subtle, less advantageous way and promotes gender discrimination without meaning to discriminate or even the awareness that this linguistic habit has discriminatory results. In order to reduce gender bias, it is therefore necessary to change people’s linguistic habits by increasing mindfulness of the advantages of gender-fair expressions in medicine as a whole. (Menegatti, 2017)

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CONCLUSION There is often the perception in surgery and medicine as a whole that gender inequity centres on lifestyle, family responsibilities and childcare issues. However, this chapter highlights that verbal communication is one of the most powerful tools through which gender inequity can be perpetrated throughout the medical profession. The insidious consequence of sexism in medical communication is that people perceive gender bias in language as normative and enact gender discrimination by following historically ordained communication rules (Ng, 2007). In the current climate, it is unlikely that faculty or patients intentionally and consciously undertake linguistic sexism. Public discussion opens a forum for gender bias awareness supported by objective and subjective data which will benefit the profession as a whole. Mentoring schemes are significantly enabling, however, they form only part of the solution to tackling gender biases. If women wish to be empowered in medicine as a gender, and not just in the form of a few single-minded individuals, systems and institutions must think authentically about how we speak and the words that are used. Mary Beard (2017, 70) states in her book on Woman & Power; “The point is simple but important: as far back as we can see in Western history there is a radical separation – real, cultural and imaginary – between women and power.” It is clear that deeply engrained biases in medical communication still exist, and are perpetrated by institutions and individuals, women included. of gendered language must be raised and highlighted in order to make a change. In this day and age, medicine celebrates autonomy and empathy in medicine and both clinical and research outcomes are “patient-centered.” These were unfamiliar concepts when first introduced into our vocabulary and are now deeply embedded in our professional conduct. This signals that we can confront and exploit the status quo of gender inequity in medical language. Women in medicine have come so far with the number of female medical graduates equaling if not outnumbering men, but nonetheless those affected by sexism in medical communication should continue to share these experiences to remind us how far we still have to go. Doctors who are female should be 82

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encouraged that the battle is not yet won and must work hard at their specialty to ensure that all females who enter it are given equitable access and respect through appropriate communication. It is achievable to speak in gender-neutral ways that are inclusive and precise as to not conjure biased attitudes towards women in medicine. Social change must be pursued at the level of the institution, the cultural structure and at the interactional level of gender.

REFERENCES Association of American Medical Colleges. (2013-2014). The State of Women in Academic Medicine. The Pipeline and Pathways to Leadership. Retrieved from https://members.aamc.org/eweb/upload/The%20 State%20of%20Women%20in%20Academic%20Medicine%202013-2014%20FINAL.pdf Badham, V. (2018). Think sexism in medicine is unique to Japan? Think again. The Guardian. Retrieved from https://www.theguardian.com/commentisfree/2018/aug/13/think-sexism-in-medicine-is-uniqueto-japan-think-again Baird, J. (2018). Women, Own Your ‘Dr’ Titles. The New York Times. Retrieved from https://www. nytimes.com/2018/06/28/opinion/women-dont-back-down-online.html Baron-Cohen, S. (2012). The Essential Difference: men, women and extreme male brain. London, UK: Penguin. Baxter, J. (2014). Double-voicing at work. Power, gender and linguistic expertise. Basingstoke, UK: Palgrave Macmillan. doi:10.1057/9781137348531 Beard, M. (2017). Women and Power. London, UK: Profile Books. Bellini, M. I., Graham, Y., Hayes, C., Zakeri, R., Parks, R., & Papalois, V. (2019). A woman’s place is in theatre: Women’s perceptions and experiences of working in surgery from the Association of Surgeons of Great Britain and Ireland women in surgery working group. BMJ Open, 9(1). doi:10.1136/ bmjopen-2018-024349 PMID:30617103 Berry, C. A. (2014). They Call Me Dr. Berry. New York Times. Retrieved from https://www.nytimes. com/2014/11/02/opinion/sunday/they-call-me-doctor-berry.html

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Boiko, J. R., Anderson, A. J. M., & Gordon, R. A. (2017). Representation of women among academic grand rounds speaker. JAMA Internal Medicine, 177(5), 722–724. doi:10.1001/jamainternmed.2016.9646 PMID:28264094 Bongiovanni, T., Yeo, H., Sosa, J. A., Yoo, P. S., Long, T., Rosenthal, M., ... Nunez-Smith, M. (2015). Attrition from surgical residency training: Perspectives from those who left. American Journal of Surgery, 210(4), 648–654. doi:10.1016/j.amjsurg.2015.05.014 PMID:26238074 Brown, A. & Ruzycki, S. (2018). The idea that medicine is above sexism is false – and destructive. Healthy Debate. Retrieved from https://healthydebate.ca/opinions/sexism-in-medicine Burkhart, S. (1987). Sexism in medical writing. British Medical Journal, 295, 19-26. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1257479/

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Butler, J. (2006). Gender Trouble. London, UK: Routledge. Cameron, D. (1985). Feminism and linguistic theory. London, UK: Macmillan. doi:10.1007/978-1-34917727-1 Cameron, D. (1995). Verbal Hygiene. London, UK: Routledge. Cameron, D. (2007) What language barrier? The Guardian. Retrieved from https://www.theguardian. com/world/2007/oct/01/gender.books Carnes, M., & Bland, C. (2007). Viewpoint: A challenge to academic health centers and the National Institutes of Health to prevent unintended gender bias in the selection of clinical and translational science award leaders. Academic Medicine, 82(2), 202–206. doi:10.1097/ACM.0b013e31802d939f PMID:17264704 Department of Health and Social Care UK. (2016). New £816 million investment in health research. Retrieved from https://www.gov.uk/government/news/new-816-million-investment-in-health-research on 22/07/2019 Eagly, A. (1987). Sex differences in social behaviour: A social-role interpretation. Hillsdale, NJ: Lawrence Erlbaum. Eagly, A., & Mladinic, A. (1994). Are people prejudiced against women? Some answers from research on attitudes, gender stereotypes, and judgments of competence. European Review of Social Psychology, 5(1), 1–35. doi:10.1080/14792779543000002 Eagly, A., Wood, W., & Diekman, A. B. (2000). Social role theory of sex differences and similarities: A current appraisal. In T. Eckes & H. M. Traunter (Eds.), The developmental social psychology of gender. Mahwah, NJ: Lawrence Erlbaum. Eckert, P. & McConnell-Ginet, S. (1992). Communities of practice: where language, gender and power all live. In K. Hall, M. Bucholtz, & B. Moonwoman (Eds.), Locating Power, Proceedings of the 1992 Berkeley Women and Language Conference. Berkeley, CA: Berkeley Woman and Language Group. Retrieved from https://web.stanford.edu/~eckert/PDF/Communitiesof.pdf

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Siegling, A., Eskritt, M., & Delaney, M. (2014). A Preliminary Investigation into Effects of Linguistic Abstraction on the Perception of Gender in Spoken Language. Current Psychology, 33, 479–500. doi:10.100712144-014-9224Files, J. A., Mayer, A. P., Ko, M. G., Jenkins, M., Bryan, M. J., & Vegunta, S. (2017). Speaker Introductions at Internal Medicine Grand Rounds: Forms of Address Reveal Gender Bias. Journal of Women’s Health, 26(5), 413–419. doi:10.1089/jwh.2016.6044 PMID:28437214 Gargiulo, D. A., Hyman, N. H., & Hebert, J. C. (2006). Women in surgery: Do we really understand the deterrents? Archives of Surgery, 141(4), 405–408. doi:10.1001/archsurg.141.4.405 PMID:16618901 Glick, P. & Fiske, S. T. (1996). The ambivalent sexism inventory: differentiating hostile and benevolent sexism. Personality and social psychology, 70(3), 491-512. doi:10.1037/0022-3514.70.3.491

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Grady, D. (2014). Carolyn Kaelin, Breast Cancer Surgeon Patient Advocate and Patient, Dies at 54. New York Times. Retrieved from https://www.nytimes.com/2015/08/10/us/carolyn-kaelin-breast-cancersurgeon-dies-at-54.html Hall, J. A., Irish, J. T., Roter, D. L., Ehrlich, C. M., & Miller, L. H. (1994). Gender in medical encounters: an analysis of physician and patient communication in a primary care setting. Health Psychology, 13, 384-293. Retrieved from https://www.ncbi.nlm.nih.gov/pubmed/7805632 Harris, C. A., Blencowe, N., & Telem, D. A. (2017). What is in a pronoun?: Why Gender-Fair Language Matters. Annals of Surgery, 266(6), 932–933. doi:10.1097/SLA.0000000000002505 PMID:28902666 Henderson, J. T. & Weisman, C. S. (2001). Physician gender effects on preventive screening and counseling: an analysis of male and female patients’ health care experience. Medical Care, 39, 1281-1292. Retrieved from https://www.ncbi.nlm.nih.gov/pubmed/11717570 Hopkins, C. (2018). Confronting unconscious bias. Royal College of Surgeons Bulletin, 100(8), 321–323. doi:10.1308/rcsbull.2018.321 Jagsi, R., Griffith, K. A., Stewart, A., Sambuco, D., DeCastro, R., & Ubel, P. A. (2013). Gender differences in salary in a recent cohort of earlycareer physician-researchers. Academic Medicine, 88(11), 1689–1699. doi:10.1097/ACM.0b013e3182a71519 PMID:24072109 Jena, A. B., Olenski, A. R., & Blumenthal, D. M. (2016). Differences in Physician Salary in US Public Medical Schools. Journal of the American Medical Association Internal Medicine, 176, 1294–1304. doi:10.1001/jamainternmed.2016.3284 PMID:27400435 Kaatz, A., Magua, W., Zimmerman, D. R., & Carnes, M. (2015). A quantitative linguistic analysis of National Institutes of Health R01 application critiques from investigators at one institution. Academic Medicine, 90(1), 69–75. doi:10.1097/ACM.0000000000000442 PMID:25140529 Lakoff, R. (1963). Language and Woman’s Place. Language in Society, 2(1), 45–80. doi:10.1017/ S0047404500000051 Lave, J., & Wenger, E. (1991). Situated learning legitimate peripheral participation. Cambridge, UK: Cambridge University Press. doi:10.1017/CBO9780511815355

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Lis, L. D., Wood, W. C., Petkova, E., & Shatkin, J. (2009). Mentoring in psychiatric residency programs: A survey of chief residents. Academic Psychiatry, 33(4), 307–312. doi:10.1176/appi.ap.33.4.307 PMID:19690111 Mayer, A. P., Blair, J. E., Ko, M. G., Hayes, S. N., Chang, Y. H., Caubet, S. L., & Files, J. A. (2014). Gender distribution of U.S. medical school faculty by academic track type. Academic Medicine, 89(2), 312–317. doi:10.1097/ACM.0000000000000089 PMID:24362384 McCord, J. H., McDonald, R., Sippel, R. S., Leverson, G., Mahvi, D. M., & Weber, S. M. (2009). Surgical career choices: The vital impact of mentoring. The Journal of Surgical Research, 155(1), 136–141. doi:10.1016/j.jss.2008.06.048 PMID:19041099 Menegatti, M., & Rubini, M. (2017). Gender bias and sexism in language. Oxford Research Encyclopaedias. doi:10.1093/acrefore/9780190228613.013.470

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Milroy, L. (1980). Language and social networks. Oxford, UK: Basil Blackwell, University Park Press. Morand, D. A. (1996). What’s in a name? An Exploration of the Social Dynamics of Form of Address in Organizations. Management Communication Quarterly, 9(4), 422–451. doi:10.1177/0893318996009004003 Ng, S. H. (2007). Language-based discrimination: Blatant and subtle forms. Journal of Language and Social Psychology, 26(2), 106–122. doi:10.1177/0261927X07300074 Palepu, A., Friedman, R. H., Barnett, R. C., Carr, P. L., Ash, A. S., Szalacha, L., & Moskowitz, M. A. (1998). Junior faculty members’ mentoring relationships and their professional development in U.S. medical schools. Academic Medicine, 73(3), 318-323. Retrieved from https://www.ncbi.nlm.nih.gov/ pubmed/9526459 Poorman, E. (2018). Why does America still have so few female doctors? The Guardian. Retrieved from https://www.theguardian.com/commentisfree/2018/jan/14/why-are-there-still-so-few-female-doctors Post, E. (2015). Professional Titles. Emily Post Etipedia. Retrieved from www.emilypost.com/communication-andtechnology/ social-names-and-titles/774-professional-titles Prewitt-Freilino, J. L., Caswell, T. A., & Laakso, E. K. (2012). The gendering of language. A comparison of gender equality in countries with gendered, natural gender, and genderless languages. Sex Roles, 66(3-4), 268–281. doi:10.100711199-011-0083-5 Roter, D. L., Hall, J. A., & Aoki, T. (2002). Physician gender effects in medical communication. Journal of the American Medical Association, 288(6), 7–756. doi:10.1001/jama.288.6.756 PMID:12169083 Saalwachter, A. R., Freischlag, J. A., Sawyer, R. G., & Sanfey, H. A. (2005). The training needs and priorities of male and female surgeons and their trainees. Journal of the American College of Surgeons, 201(2), 199–205. doi:10.1016/j.jamcollsurg.2005.03.016 PMID:16038816 Sanghani, R. (2017). Feisty, frigid and frump: 25 words we only use to describe women. The Telegraph. Retrieved from https://www.telegraph.co.uk/women/life/ambitious-frigid-and-frumpy-25-words-weonly-use-to-describe-wom/ Schor, N. F. (2018). The Decanal Divide: Women in Decanal Roles at US Medical Schools. Academic Medicine, 93(2), 237–240. doi:10.1097/ACM.0000000000001863 PMID:28834842

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Shalhub, S. (2018). Stop calling me a “female” surgeon. Op-Med. Retrieved from https://opmed.doximity.com/articles/stop-calling-me-a-female-surgeon-a2c87f9749f3 Simpson, J., & Zeffman, H. (2017). Women prepare for a power grab in church, police and BBC. The Times. Retrieved from https://www.thetimes.co.uk/article/women-prepare-for-a-power-grab-in-churchpolice-and-bbc-cwgsrwtwm Spender, D. (1980). Man Made Language. London, UK: Pandora Press. Sullivan, M. C., Bucholz, E. M., Yeo, H., Roman, S. A., Bell, R. H., & Sosa, J. A. (2012). “Join the Club” Effect of resident and attending social interactions on overall satisfaction among 4390 general surgery residents. Archives of Surgery, 147(5), 408–414. doi:10.1001/archsurg.2012.27 PMID:22785631 Tannen, D. (1992). You Just Don’t Understand: Women and Men in Conversation. London, UK: Virago.

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Thompson, A. J. (2014). Linguistic relativity: Can gendered languages present sexist atttitudes? Linguistics. Titjen, F. (2018). Language and Gender. Cambridge, UK: Cambridge University Press. Trix, F., & Psenka, C. (2003). Exploring the color of glass: Letters of recommendation for female and male medical faculty. Discourse & Society, 14(2), 191–220. doi:10.1177/0957926503014002277 Usherwood, T. (1992). Sex bias in the BMJ: an audit. BMJ, 304, 880-1. Retrieved from https://www. bmj.com/content/304/6831/880 Wenger, E. (2000). Communities of practice: learning, meaning and identity. Cambridge, UK: Cambridge University Press. West, C. & Zimmerman, D. (1987). Doing Gender. Gender & Society, 1(2), 125-151. Retrieved from https://www.jstor.org/stable/189945?seq=1#page_scan_tab_contents Women in Surgery. (n.d.). Royal College of Surgeons. Retrieved from https://www.rcseng.ac.uk/careersin-surgery/women-in-surgery/ Wood, W. & Eagly, A. (2002). A cross-cultural analysis of the behavior of women and men: implications for the origins of sex differences. Psychological bulletin, 128(5), 699-727. Retrieved from https://www. ncbi.nlm.nih.gov/pubmed/12206191 Wright, A. L., Ryan, K., St Germain, P., Schwindt, L., Sager, R., & Reed, K. L. (2007). Compensation in academic medicine: Progress toward gender equity. Journal of General Internal Medicine, 22, 1398–1402. doi:10.100711606-007-0329-7 PMID:17694417 Zelek, B., & Phillips, S. (2003). Gender and power: Nurses and doctors in Canada. International Journal for Equity in Health, 2(1), 1–11. doi:10.1186/1475-9276-2-1 PMID:12605720

ADDITIONAL READING Bruckmüller, S., Hegarty, P., & Abele, A. E. (2012). Framing gender differences: Linguistic normativity affects perceptions of power and gender stereotypes. European Journal of Social Psychology, 42(2), 210–218. doi:10.1002/ejsp.858

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Douglas, K. M., & Sutton, R. M. (2003). Effects of communication goals and expectancies on language abstraction. Journal of Personality and Social Psychology, 84(4), 682–696. doi:10.1037/00223514.84.4.682 PMID:12703643 Gaucher, D., Friesen, J., & Kay, A. C. (2011). Evidence that gendered wording in job advertisements exists and sustains gender inequality. Journal of Personality and Social Psychology, 101(1), 109–128. doi:10.1037/a0022530 PMID:21381851 Heilman, M. E., & Eagly, A. H. (2008). Gender stereotypes are alive, well, and busy producing workplace discrimination. Industrial and Organizational Psychology: Perspectives on Science and Practice, 1(4), 393–398. doi:10.1111/j.1754-9434.2008.00072.x

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Maass, A., Suitner, C., & Merkel, E. (2013). Does political correctness make (social) sense? In J. P. Forgas, J. Laszlo, & O. Vincze (Eds.), Social cognition and communication (pp. 331–346). New York: Psychology Press. Madera, J. M., Hebl, M. R., & Martin, R. C. (2009). Gender and letters of recommendation for academia: Agentic and communal differences. The Journal of Applied Psychology, 94(6), 1591–1599. doi:10.1037/ a0016539 PMID:19916666 Silveira, K. (1980). Generic masculine words and thinking. In C. Kramarae (Ed.), The voices and words of women and men (pp. 165–178). Oxford, United Kingdom: Pergamon. Stahlberg, D., Braun, F., Irmen, L., & Sczesny, S. (2007). Representation of the sexes in language. In K. Fiedler (Ed.), Social communication (pp. 163–187). New York, US: Psychology Press.

KEY TERMS AND DEFINITIONS Feminism: The promotion of female rights and advocacy of equality of the sexes. Gender Bias: Prejudice towards one gender. Gendered Language: Language that has a bias towards a particular gender. Gender Inequity: The unequal treatment of women and men. Medicine: The occupation of the practice of promoting and restoring health through identification and treatment of illness. Sociolinguistics: Study of the language differences between two sexes. Surgery: The occupation of the treatment of tissues of the body by incision or manipulation.

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This research was previously published in Gender Equity in the Medical Profession; pages 75-93, copyright year 2020 by Medical Information Science Reference (an imprint of IGI Global).

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Chapter 6

Health Literacy and Ethnic Minority Populations Dela Idowu Gift of Living Donation, UK Gillian King University of London, UK

ABSTRACT This chapter will show how optimizing health literacy can benefit the delivery of healthcare to the population in a way that materially addresses the inequalities in the National Health Service (NHS). These inequalities adversely impact different population groups in different ways, for various reasons. However, ethnic minority populations are especially vulnerable to inequalities having an adverse effect on the delivery of healthcare to the population, thereby adversely affecting their access, engagement, and healthcare benefits and consequently their general health, wellbeing, and life expectancy. Optimizing health literacy in these populations will enable increased engagement and participation, thereby delivering healthcare more effectively to the population by tailoring it to their needs and addressing current inequalities.

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INTRODUCTION The delivery of healthcare to the UK population since 1948, has been achieved through a universal system of healthcare, the National Health Service (NHS). In post-war Britain, it was the aim of the government of the day to provide the entire population with a service which was universal and free at the point of need. The service remains free, although patients who are able, in certain circumstances contribute through paying for prescriptions, dental, and optical services. The service has remained the same in principle for almost 70 years, and has resisted attempts to introduce direct contributions despite a rapidly changing and aging population, and advances in medical science that drive up the cost of healthcare and the expectations of patients. The NHS is still the largest single pay system in the world, employing some 1.4 million people. DOI: 10.4018/978-1-6684-2414-8.ch006

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 Health Literacy and Ethnic Minority Populations

It could be argued, however, that the comprehensive nature of the delivery to the entire population produced a weakness which was not accounted for from the its inception (Asaria, 2017). Thus, inequalities developed, which according to Asaria (2017), have resisted various attempts over the years to mitigate. The UK being a diverse1 country made up of four nation, England, Wales, Scotland, and Northern Ireland, needed a service which would cater to the unique needs of the population. Early on, the system was unable to meet those needs, and inequalities appeared which can affect different populations in various ways. It is well established that inequalities can arise from ethnicity (Szczepura, 2005), geographical location (Hacking et al., 2011), age (Raine et al., 2009), gender (Rein et al., 2010), type of illness (Emerson & Baines, 2011), and other aspects of disadvantage or vulnerability (Parry et al., 2007; Dixon-Woods et al., 2006) (as cited by Cookson, Propper, Asaria & Raine, 2016 p.1). As well as the aforementioned inequalities, there is also ample evidence that there are socio-economic inequalities in the NHS. Cookson et al (2016) concluded that despite “poorer individuals receiving a greater quantity of publicly funded NHS healthcare in terms of overall expenditure… richer patients tend to achieve better outcomes” (p.19). Ethnic minority populations often bear the brunt of some of these inequalities as ethnicity has an impact on health inequalities (Matthews, 2015). It was established by Karlson & Nazroo (2000) that ethnicity has an impact on the health of the population and has been recognised as a crucial factor since the 1970s. (as cited by Matthews, 2015 p.18). Socio-economic inequalities affect ethnic minority populations disproportionately, as a greater proportion of them are in a lower socio-economic group and experience social deprivation in the form of unemployment, poverty, and poor housing more acutely than the rest of the population. This adversely affects their engagement with healthcare delivery, which invariably results in poorer health outcomes. Bécares (2013) has found that generally, people from black and minority ethnic backgrounds in Britain have poorer health than the rest of the population. (as cited by Matthews, 2015 p.19). Further, Bécares (2013) found that geographical inequalities also affect ethnic minority populations more adversely, with London residents experiencing greater inequality than the rest of the population in Britain (as cited by Matthews, 2015 p.19). So, an individual of ethnic minority origin, who lives in London, can be up to three times more likely to have a long-term illness than their white counterpart. It is possible that the picture is much more complex, and indeed, Williams (2015) argues as much, but repeated research has found that these inequalities persist, despite many attempts through research and government policy to address them. (Asaria, 2017). It has been argued that the inequalities persist due to a lack of consensus among academics and policy makers alike, as to their cause and origin. The concept of biological differences among the races has historically been used to interpret different epidemiology of the diseases of different races. However, Williams (2015) argues against this and contends that there is no evidence that biological differences exist between ethnicities as “different population groups have more biological commonalities than differences; variations that do exist are no greater than those in a single population group (White, 2013)”. (Williams, 2015 p.18). Therefore, it is logical to conclude that the inequalities persist due to the social and economic structures that contribute to the inequalities in our society, which is a conclusion Williams (2015) comes to, after he analyses the impact racism has on inequalities. Institutional racism is no doubt a factor in the way the NHS operates and relates to the ethnic minority population. A British social attitudes survey conducted in 2013 showed that, though consistently dropping since 1983, 30% of the British population still described themselves as racially prejudiced. (National Centre of Social Research, 2014). There is, 90

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 Health Literacy and Ethnic Minority Populations

therefore, ample support for the conclusion that racially prejudiced attitudes persist in British institutions of which the NHS is one. The persistence of these inequalities for the ethnic minority population within the NHS has been previously identified and acknowledged. Following the McPherson Inquiry (1999),2 Race Equality Action plan was launched to address the lack of diversity in the leadership of the NHS. It was necessary to launch subsequent plans in 2004 and 2015 as little progress was made in the previous strategies. As research now shows a link between patient experience and treatment of ethnic minority staff, it has become imperative to address the inequalities that are evident in the NHS as an institution (Kline, 2015). The author further asserts that “such research provides a powerful business case for tackling discrimination to improve patient care, especially when further strengthened by evidence that diversity in leadership benefits innovation and the likelihood that NHS organisations whose leadership more closely resembles that of the communities being served will be more sensitive to their needs” (Kline, 2015, para.3). Health literacy is well placed to address these inequalities, as the main advantage of health literacy is patient engagement, which would enable the ethnic minority population to engage with their own health needs as well as with the healthcare professionals in delivering those needs to the population. An engaged population increases participation and empowerment of the patients which would improve health outcomes and decrease mortality rates. Berkman et al. (2011) showed that people who lack health literacy have poorer health outcomes and higher mortality rates (as cited by Batterham, Hawkins, Collins, Buchbinder & Osborne, 2016). According to Berkman et al. (2011) health literacy is a relatively new concept and was first established in the 1970s to increase patients’ ability to engage with their healthcare by being able to read and understand written health information (as cited by Batterham et al.2016 p. 3). The concept has recently become more prominent as a result of the European health policy framework, Health 2020. The policy builds on two European Health charters3 which promote health in terms of human rights and has at its heart patient participation, improvements in leadership, and health governance that is participatory. This approach has been adopted by European countries including the UK since the WHO regional office Europe launched a strategic document, “Priorities for health systems strengthening in the WHO European Region 2015 – 2020: walking the talk on people centeredness” (Jakab et al., 2016). As the title suggests, the emphasis is people centred and is therefore an opportunity to optimize health literacy beyond just improving the ability of patients to understand written health information. There is potential for the health literacy of individuals to be harnessed for the benefit of the community and populations and to further enhance it in organisations to benefit the health system and population groups alike (Batterham et al., 2016). This will enable health systems and population groups to work together to improve health literacy in vulnerable population groups and thereby improve the health outcomes and mortality of population groups where inequalities persist. It is also an opportunity in the UK to strengthen the leadership in the NHS in order that it may better serve the healthcare needs of the population groups. The current structure of the NHS does not match the needs of the ethnic minority population. The reasons for this are complex, but it is at least in part due to the unrepresentative leadership. Senior management and decision-makers in the NHS, do not match the population they serve. It can therefore be a challenge for the voice of patients and patient groups to be heard, but if the healthcare system includes health literacy as part of its organisational structure this will produce organically, a more diverse leadership which could better serve the community. Kline (2014) concluded that, “it is surely time to urgently and decisively address the widespread, deep-rooted, systemic and largely unchanging discrimination 91

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 Health Literacy and Ethnic Minority Populations

that black and minority ethnic staff within the NHS face. The evidence is now clear that their treatment is a good predictor of the quality of patient care.” (p.66). This chapter will outline how health literacy can specifically address the inequalities already identified.

BACKGROUND

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Health literacy was first introduced as a concept by Simonds (1974) as a means of improving healthcare delivery, by providing basic health education (as cited by Palumbo, 2016). It was thought that patients would be able to participate better in their health care if they were provided with written and numerical health information that they could understand, and this would aid in the delivery of their care. However, there is not as yet a universal standard method of measuring individual health literacy, but different methods have been used which attempt to quantify the extent to which individuals are able to understand health information, which require both numerical and written skills. It has been suggested that the current measurement tools do not consider the way the modern broader definition of health literacy has evolved, and therefore constitutes a limitation on how health literacy may be used to improve inequalities (Batterham et al., 2016). Nevertheless, in England, a recent study discovered that 43% of adults (16-65) found health information provided by the health system, such as medicine labels, health history, consent forms, education booklets, and brochures, difficult to understand. This rose to 61% when the information required numerical skills (Rowlands et al., 2016). It is worth noting that before this study, the level of health literacy in England was unknown. Further, as had been previously suggested by Batterham et al., (2016) and observed by Rowlands et al. (2016) there is still more work to be done on measuring health literacy before it can be useful in determining how to harness it and optimize it. However, it is evident from the literature review that individuals, health systems, and health professionals have a part to play in optimizing health literacy in order to improve health outcomes. Rowlands et al. (2016) found that “[General Practitioners] have a key literacy role through patient care and through their roles as health service commissioners. Rigour should be applied to the development of health materials” (Rowlands et al., 2016, emphasis added). Even though the measurement of health literacy is still evolving, the concept has been further expanded from its basic form. It was described by Raynor (2012) as having three aspects; the ability to read and understand health information, a critical ability to engage with the health care process, and the removal of unnecessary barriers and complexities by the health care system which could prevent the patient from understanding the system and becoming involved.

HEALTH LITERACY IN THE COMMUNITY The Scope of Health Literacy The purpose of this chapter is to apply health literacy as a tool to improve health inequalities. To apply it as a tool however, it is necessary to acknowledge that health literacy includes multiple components and can be found in multiple settings (Batterham et al., 2016). In its report, The World Health Organisation Regional office for Europe (2013) suggested that “health literacy assessment can be used to improve clinical service delivery, community participation in health service planning, public health education, 92

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and policy development” (as cited by Batterham et al., 2016, p.4). Several definitions of health literacy have emerged over the years, as the concept is still evolving. However, the authors of this paper will mainly rely on the definition provided by the World Health Organisation (2013), which indicates that health literacy is the personal characteristics and social resources needed for individuals and communities to access, understand, appraise, and use information and services to make decisions about health. This definition acknowledges that responsibility for tackling this lies with the community and health services and not just with individuals. Implicit within the definition is the idea that it is a critical empowerment strategy to increase people’s control over their health, their ability to seek out information, and their ability to take responsibility. Health literacy includes elements such as reading, verbal communication, numeracy skills, comprehension, and the ability to use information in key health care decision-making. Many people struggle regularly to understand these elements of health information, but the struggle is even harder for people from an ethnic minority background because of their unique cultural challenges and barriers. For example, illnesses such as sickle cell disease, high blood pressure, diabetes, and chronic kidney disease, are prevalent in the black population. However, as many are unaware of the link between their illnesses and their diet, it is often difficult for them to manage their condition as effectively as they are expected to by the health care professionals. There is also a barrier of poor language competence which is an issue for many first-generation immigrant adults who are aging and require specific health information. It therefore follows that by improving health literacy in these groups, together with increasing system and healthcare professional awareness of the challenges they face, there would be an opportunity to achieve optimum healthcare outcomes.

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Health Literacy and the NHS It is very important for the NHS to address health literacy in a country where people come from diverse backgrounds. This is especially relevant for NHS England, as people from ethnic minority backgrounds principally reside in England. Taking the black population as an example, at the time of the last census in 2011, around 3.1 million people identified themselves as Black or Black British and11% of the minority black population live in the Greater London area, a further 2% reside in the West Midlands. However, 78% of the African population and (61%) Caribbean population live in London. (Office for National Statistics, 2012). NHS England has set up a National Health Literacy Collaborative with membership drawn from other arm’s length bodies, government departments, representative and delivery organisations, and the voluntary sector. A national strategy for health literacy is being developed which includes a health literacy resource hub, which is a place for practitioners looking for resources and information. Also being developed, is some health literacy demonstrator activity which aims to test out whether improving people’s heath literacy can also enhance their ability to self-manage their long term condition. Further, NHS England’s Supported Self Care programme (Berry, 2016) has been working hard to ensure that the language it uses is relevant, appropriate, and expressive for people with lived experience to ensure that people can relate to the use of the language. This is helpful for people with lower levels of health literacy. There is still much more to be done with health literacy in the NHS, but it is clear that there is an awareness of how health literacy can be optimized in the system, giving patients independence and some autonomy, as has been seen with self-care.

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Health Literacy and the Patient Health literacy is vital for routine patient care. It is vital for disease prevention, early screening, and self-care health management. Health literacy skills are needed for most aspects of people’s lives in one form or another: dialogue and discussion, reading health information, making health care choices, and for the use of medical devices for personal or family health care. Insulin injections, blood pressure monitoring machines, home dialysis machines, inhalers, and calculating timing or dosage of medicines are just some of the ways health literacy is part of routine health care. For most of the general population, their first engagement with health literacy is through their General practitioner (GP) Surgery and GP, as a result, both have a pivotal role in improving communication skills, and tailoring information not only to clinical needs but also to patient health literacy. This need was acknowledged by Rowlands et al. (2016) discussed earlier. Practice Managers have a role to develop health systems and create environments that support patients’ health literacy skills, both in understanding and using health information. This can be done by ensuring information and resources are easily accessible and meet the diverse needs of their cohort of patients. They can also make provisions for certain services required specifically for ethnic minority groups. In the UK, this might include specialist services for illnesses prevalent among black people such as sickle cell disease, because access to such services could help to improve health literacy. Training for healthcare professionals is necessary in order for them to better support patients from ethnic minority backgrounds; it will also help to recognise key symptoms e.g. sickle cell crisis, high blood pressure in black patients, and improve levels of cultural awareness. In addition, health care organisations could improve health literacy in the ethnic minority population by recruiting more staff from ethnic minority backgrounds who can help to improve access to services for the ethnic minority population.

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The Patient in the Community Edwards, Wood, Davies & Edwards (2013) found that it is possible, that having accessed the health literacy of individuals in the health system, individuals with high literacy are able to distribute health literacy throughout the community to improve access, participation, and compliance (as cited by Batterham et al., 2016). Ali, Ferguson, Mitha & Hanlon (2014) found that health care professionals find it challenging to communicate effectively with people with low literacy (as cited by Batterham, 2016). The fact that there is limited research in organizational health literacy led to the suggestion that this is because of lack of confidence and the inability to find helpful resources (Batterham, 2016). Chaudhry et al., (2011) established that there is inequality in health literacy among ethnic minority groups, therefore it is particularly useful to distribute health literacy among these populations, as it is more likely that results will be achieved by members of the community with high literacy communicating within their own community. Parashar (2005) found that the average literacy level for women in villages was a stronger indicator for childhood immunization than was the literacy levels of individuals. (as cited by Batterham, 2016). According to him, “this suggests that the sharing of information and experiences among mothers increased the likelihood that they would immunize their children.” (Batterham, 2016 p.8) This type of intervention would be particularly useful in ethnic minority populations as the experiences will be shared within the community group. This is the best place to understand the ways in which discussions about health occur within families and social networks and understand the cultural and religious 94

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norms that influence the way the people in the population think and act about their health. This type of intervention is needs based and will therefore develop the capacity for ethnic minority populations to make decisions that will promote health and better manage chronic health conditions. This strategy is already being trialed in the UK, based on previous success in the Netherlands (Ismail, 2015) and the US (Waterman et al., 2015). It was observed in the UK that patients with end stage renal failure (ESRF) who are of ethnic minority origin, spend up to twice as long on the waiting list (despite adjustments made for ethnicity and other factors) and are less likely to be recipients of living donors. In collaboration with NHS Blood and Transplant, Kidney Research UK and Gift of Living Donation (GOLD), a proposal was funded to train peer educators to share their experiences of kidney donation with potential donors and recipients. As a result, patients and their families become more knowledgeable about ESRF and are better equipped to make informed decisions about kidney donation. The expected outcome (the project is still at the pioneering stage) is that not only will live donors be increased in the black community, there will be increased awareness through education (distributed health literacy), which will lead to better health literacy across all transplant needs and better health outcomes and better mortality rates in the black community when it comes to kidney disease. This model could be used throughout the population for any vulnerable group facing inequalities. For this type of intervention to be optimized however, it is necessary for the NHS to be health literate. The literature to date on health literacy, does establish that from the genesis of the development of health literacy as a concept, emphasis has been placed on individual health literacy, which the authors of this paper have sought to expand to communities through distributed health literacy. However, organizational health literacy is still in its infancy in term of research but is necessary for the intervention previously described to be effective (Palumbo, 2016). Even where individuals have high literacy, it has been found through a recent literature review (Palumbo, 2016), that it is not merely sufficient for individuals to be health literate, but health organizations must also cultivate a health literate environment, through policy and culture, in which the patient with adequate health literacy skills can engage and participate. Though this is not yet the prevailing trend, it is possible to achieve if health organisations make health literacy a main organisational priority by involving the populations they serve in the “design, implementation and evaluation of health care services” (Palumbo, 2016 p.83). It could also be achieved by implementing health literacy strategies at any stage of the patient’s experience, making health information accessible, and providing appropriate guidance for the patient through the system (Palumbo, 2016).

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SOLUTIONS AND RECOMMENDATIONS Community Engagement The ethnic minority population in Britain is struggling with its identity4, as evidenced by social problems such as racial discrimination, poverty, housing, employment, immigration, social status, and mistrust of the establishment which all have a profound effect on people achieving good health. This will always represent a major challenge for healthcare professionals, health service providers and policy makers, all of whom form part of the establishment. As Mathews (2015) concluded, we must not “…avoid analyzing

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the social and economic causes of inequality and consequently, fail to challenge the social and economic structures that create an inequitable society” (p.20). It is possible to challenge these inequalities by paying attention to what is required by the community and implementing policies and processes at an institutional level that will enable the community to participate and thereby be empowered. Eliminating the impact of these inequalities and improving the social environment is a goal we must strive for as a central component of achieving optimal health by optimizing health literacy through community groups. Ethnic minority community groups can also play a role by promoting greater empowerment among patients in their community. Achievable results are possible by helping individuals develop confidence to process, and understand basic health information and services needed to make appropriate health decisions. This may best be achieved through the peer support model of communication, and through targeted community-based educational outreach. Culturally sensitive community based patient education can also provide a solution and improve health literacy. This type of health literacy is already helping patients to live with long term illnesses with the aim of achieving improved health outcomes in the UK.

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Community Engagement in the US and the Netherlands Community outreach patient educational programmes are widely used in the US as an effective intervention to increase health literacy in the African American population. One such successful community outreach programme evaluated the effectiveness of educational interventions in removing barriers to living donor kidney transplantation for Black patients, as they are less likely to receive a live donor kidney transplant (LDKT) than patients of all other races (Rodrigue et al., 2014). The study found that patients that had received intervention in their home for themselves and their guests were more likely to have donor inquiry and evaluation. They were also more likely to have higher knowledge, fewer concerns, and higher willingness to talk to others about donation six weeks after intervention. Rodrigue et al. (2014) concluded that the study highlighted the importance of including the patient’s social network in LDKT education and the potential of the intervention to reduce racial inequality in LDKT rates. Findings in the Netherlands also show proven success that community education can play a key role in helping to improve health literacy in ethnic communities; especially in the case of informing patients and their families about living kidney donation (Ismail et al., 2014). They found that home-based family intervention increased knowledge, communication, and living donation rates in a randomized controlled trial. The authors developed and tested an educational program to support well-informed decision making among patients and their social network regarding living donor kidney transplantation (LDKT). One hundred sixty-three patients who were unable to find a living donor were randomized to standard care or standard care plus home-based education. In the plus group, patients and members of their social network participated in home-based educational meetings and discussed renal replacement therapy options. Patients and invitees completed pre and post self-report questionnaires measuring knowledge, risk perception, communication, self-efficacy, and subjective norm. LDKT activities were observed for six months’ post intervention. Patients in the experimental group showed significantly more improvements in knowledge and communication compared with the control group. The invitees showed pre and post increases in knowledge and attitude toward discussing renal replacement therapies, attitude toward donating a kidney, willingness to donate a kidney, and a decrease in risk perception.

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Finally, there were significantly more inquiries, evaluations, and actual LDKTs in the experimental group compared with the control group. The conclusion was that home-based family education supports well-informed decision making and promotes access to LDKT.

Community Engagement in the UK Another community education outreach effort that has proven highly successful and valuable is the role peer educators play in increasing health literacy. Kidney Research UK developed a peer educator outreach initiative to increase the number of ethnic minorities on the organ donor register (Buffin, Little, Jain & Warrens, 2015). Peer Educators are lay people, usually from the local community, with a passion for promoting health and giving back to their communities. They have an empathy born out of experience, in terms of language, culture & religion; moreover, they have similar experiences with healthcare. In the UK, this form of community outreach has benefited ethnic minority patients living with End Stage Renal Disease (ESRD). Ethnic minority patients with ESRD make up 30% of people on the UK’s transplant waiting list, but they spend longer on dialysis than the rest of the general population due to the lack of matching donor kidneys. Culturally, people from ethnic minority populations are more amenable to living kidney donation than cadaveric donation. However, the numbers accessing living kidney donation are still disproportionate compared to white patients.

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The UK Pilot NHS Blood and Transplant (NHSBT), in partnership with The Living Donor Kidney Transplantation 2020 UK Strategy Implementation Group (LDKT 2020), Kidney Research UK, and Gift of Living Donation, a Black & Minority Ethnic (BME) community organisation, funded the first UK pilot peer educator LDKT home-based education programme. The aim of the one-year pilot was to help identify the barriers affecting ethnic minority patients’ access to living transplantation and improve engagement within the community. The pilot was the combination of the American model previously described and the Peer Educator Model developed by Kidney Research UK. The implementation of this unique programme offered patients a more culturally relevant educational approach to living kidney donation. It was also more accessible to a wider group of ethnic minorities who would never have considered living donation. The culturally tailored model empowered patients to broach the difficult conversation of their need for a kidney with loved ones, it also engaged and educated family members on living kidney donation. The model uses culturally relatable DVDs, books, and printed materials to deliver its educational sessions. The home education pilot was established to complement patient education provided in the hospital setting. By engaging with patients and their families in the home environment, the primary aim was to improve awareness and access to LDKT. The ‘at home’ element of the intervention offered: a more relaxed environment; easier access to family and friends; an opportunity to discuss barriers to LDKT; provide information, and build trust.

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Background of UK Pilot The pilot was established in two large UK transplant centres: Queen Elizabeth Hospital, University Hospitals of Birmingham (UHB) for South Asian communities, and Guy’s and St. Thomas’ NHS Foundation Trust (GSTT), London for Black communities. Key roles were recruited/identified locally for each site and included: • • • •

1 Peer Educator Coordinator (PEC). 1 Lead Nurse (Band 7/8). Up to 10 Peer Educator Volunteers – transplant donors & recipients. 3-4 Link Nurses representing each key clinical area. ◦◦ Living donor coordination ◦◦ Recipient coordination ◦◦ Advanced kidney care/low clearance Governance

• • • • •

• •

ACE Advisory and Dissemination Board (ADB) appointments. Donor and recipient volunteers recruited and inducted via Trust Voluntary Services. Link nurses identified for each clinical area to identify suitable patients and communicate directly with PEC. Policies, guidance, and procedures developed in line with Trust Governance requirements. Bespoke, documentation developed to underpin all aspects of the programme. ◦◦ Job profiles ◦◦ Risk assessments ◦◦ Participant consent forms ◦◦ Volunteer training programmes Agreed upon standards and guidelines for record-keeping. All documentation transferable to other Trusts with minor adaptations. Education and Training

•

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•

All Peer Educator volunteers received Trust specific induction and accredited, bespoke training equivalent to an A level standard delivered by ADB members. On-going education and support from PECs, lead and link nurses, and core project team.

Patient Recruitment Link nurses in each of the key clinical areas were identified patients from the relevant communities (Black or Asian) who were: • • •

Referred to advanced kidney care from nephrology or a failing transplant. Scheduled to attend group education meetings in preparation for renal replacement therapy (RRT). Poor attendees who may have disengaged with the healthcare team.

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• •

On dialysis with no documented transplant plan. On the transplant waiting list without LDKT options identified/followed-up.

Deliverable Outcomes To accommodate the short duration of the project, the deliverable outcomes were modified to achieve realistic targets:

Quantitative Measures • • •

Expressions of interest from enrolled patients and their families about LDKT. Uptake of and attendance at patient education sessions/events including prospective patients and lapsed attendees. Uptake of and attendance at home visits. Qualitative Measures (Reflections and Opinions): Assessed by Questionnaire +/- Focus Groups

• • •

Individual patients, family members, and friends. Multi-disciplinary team members. Peer Educator Volunteers.

Other Outputs Retrospective participant (patients, potential donors, peer educator volunteers, and multi-disciplinary team) analysis to explore the identified barriers to LDKT; how they could best be overcome, and feedback on the pilot project itself • •

Identify socio-economic determinant for future measurement or indicator. PEC involvement and role profile/experience and impact.

Toolkit template for dissemination to other Trusts e.g. applied learning, governance processes, volunteer recruitment and training and leadership (Peer Educator Coordinator, Peer Educator Volunteer and professional)

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Outcomes and Shared Learning Quantitative data collection was limited by the short timeframe of the project, delayed due to Trust volunteer recruitment and induction processes (on GSTT site) and recruitment of PEC (UHB site). Data collection commenced on the GSTT site from January 2017 and in April 2017 at UHB, where the project has been extended within the remaining budget until the 30 June 2017. The uptake of attendance at the education sessions or engagement of lapsed attendees as a direct result of the project could not be analysed accurately in this short period. A direct referral from the GSTT advanced kidney care clinic in February, resulting in a home visit in March 2017.

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Qualitative analysis was performed using a short Survey Monkey questionnaire to healthcare professionals and a paper questionnaire for all PEC, volunteer, and patient participants, tailored accordingly. Response rates as follows: • •

Professionals: 89% (8/9). Peer Volunteers: 78% (7/9) GSTT (includes volunteers who withdrew) 66% (4/6) UHB (includes trained volunteers who had not received referrals). Patient and donor participants were surveyed separately after the home visit and all participants (2 potential donors, 1 patient) responded.

•

Essentials for Success •

Effective collaborations- strategic (within the core team); operational (between colleagues and key departments within individual Trusts) and good team dynamics at all levels. Strong leadership - core project team, early appointment of a PEC, and lead nurse to establish and sustain the project. Strong belief and commitment to success within the core project team and volunteers. Willing volunteers with insight into the donor or recipient experience. Recognise the challenge- a volunteer home intervention model is a ‘first’ for most Trusts; few existing policies and guidelines in place. Time- to embed the concept, establish acceptance, manage logistics, and provide practical solutions to local issues.

• • • • •

Participant Perspectives •

•

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•

Healthcare professionals ◦◦ Initially more skeptical about the likelihood of success in comparison with PECs and volunteers ◦◦ Initially more concerned about volunteer recruitment, additional workload, and Trust engagement than volunteers Healthcare professionals and volunteers ◦◦ Some volunteers withdrew due to local Trust volunteer recruitment and induction processes ◦◦ All positive about success by the end of the pilot ◦◦ Expressed concerns about future funding to sustain the project All participants (patients, donors, volunteers, and professionals) ◦◦ Evaluated the pilot positively overall ◦◦ Evaluated the home visit experience positively ◦◦ Generated 2 live donor inquiries

Summary of UK Pilot This pilot demonstrates to date ‘proof of concept’ - that it is feasible to set up a cost effective, sustainable home-based education programme using Peer Volunteers to complement hospital-based education. Further quantitative analysis is required to assess the impact of home-based intervention using this 100

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 Health Literacy and Ethnic Minority Populations

model. The qualitative analysis shows that the initiative was welcomed by patients and volunteers and healthcare professionals became more positive about success as the project progressed. A key output from this pilot will be the development of a comprehensive toolkit to provide a template for other UK Trusts who wish to adopt this approach (Burnapp, 2017)

SOLUTIONS AND RECOMMENDATIONS To greatly improve health outcomes among its ethnic minority population, especially in the South East of England and the Midlands, the UK needs to move towards an inclusive model of health literacy. This model must seek to engage organisations, health care professionals, communities, and individuals, in a linked, multi sector collaboration.

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Individual Level The authors have shown that even when patients are health literate, interacting with healthcare professionals and navigating the complex nature of the healthcare system can be very intimidating, and stressful for the patient; especially if coupled with the fear of a new diagnosis or the fear associated with receiving instructions that require reading or form filling. Individuals who are unsure, lack the confidence to ask questions or need help completing health information paperwork or communicating their health needs, should be encouraged to seek the support of a family member, friend, or some other person from their social network, for medical appointments or consultations. This is a simple way of improving the health literacy of individuals. This helps to provide patients with an extra pair of ears to reinforce the information provided by GPs or healthcare professionals, seek clarification and understanding when needed or act as an interpreter. This support also benefits 1st generation ethnic minorities for who English may not be their 1st language or who find it difficult to understand some of the medical terminology and their diagnosis. This kind of support is common in ethnic minority communities where health decisions are made not just by individuals, but are strongly supported by family members. This form of engagement and family support will certainly improve access to health information and services for patients and should be encouraged. Patient centred care would also improve healthcare literacy in ethnic minority individuals (Epstein, Fiscella, Lesser & Strange, 2010). The phrase “patient-centred care” has become relevant since the launch of Health 2020, but its meaning is poorly understood. Epstein et al., (2010) describes patient-centred care, why it matters, and how policy makers can advance it in practice. Ultimately, patient-centred care is determined by the quality of interactions between patients and clinicians. The evidence shows that patient-centred care improves disease outcomes and quality of life, and that it is critical to addressing racial, ethnic, and socioeconomic disparities in health care and health outcomes. Policy makers need to look beyond such areas as health information technology to shape a coordinated and focused national policy in support of patient-centred care. The policies should help health professionals acquire and maintain skills related to patient-centred care, and it should encourage organizations to cultivate a culture of patient-centeredness.

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Health Care Services and Health Care Professionals A coordinated and focused approach is needed to make health literacy an integral aspect of healthcare services at all levels. For example, at the primary care level, a GP’s ability to respond to ethnic minority patients with different health literacy needs requires them to develop strategies and skills to engage more effectively with their patients to enhance the quality of their health. These skills and strategies can be shared with other GPs as good practice standards and incorporated in the clinic, making it an integral and coordinated effort to routinely deliver on health literacy. Many factors in the current UK health care system are organisational barriers which prevent even health literate individuals from engaging with the system. In the UK, the health care system is a large, sometimes bureaucratic, public institution which can be mildly annoying in other government bodies, but when a chronically ill patient relies on these institutional systems for their well-being, when they break down or don’t work because they are too generalised, it can feel life threatening. It is incumbent on the institution to work to remove barriers that frustrate the efforts of patients who are health literate, from engaging with the processes and ensure they are designed for patients. This can be achieved by patients being a part of the decision making process, as patients, but also as part of the institutional leadership. This may need to involve a major cultural shift in the UK, because the institutions tend to be topheavy and centred around professionals, which is understandable, considering no one wants to be treated in hospital by an amateur, but what the studies in the US and the Netherlands, as well as the pilot in the UK has shown is that there is a gap between what the medical professionals can provide by way of information and diagnoses and treatment and what the patient needs in terms of emotional support. This is especially true when it comes to serious chronic illnesses, such as cancer and kidney disease. These are life threatening and life-changing diseases and can be frightening for even the most health literate (that is probably why doctors make the worst patients)! It has been proven that emotional and other forms of support through an illness can have a positive impact on compliance and outcomes for patients, so much more needs to be done to bridge this gap, and health care organisations have a role to play in optimizing health literacy to achieve these aims.

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Community Language, diverse backgrounds, and cultural barriers often keep the ethnic minority population from accessing optimum health care. However, healthcare systems will benefit from building networks with community and faith-based organisations and charities, as they are a good and powerful channel to promote and deliver targeted health information to diverse groups. This role can also be reversed, and community members can be involved where key decisions about the community’s health are being discussed at a strategic and policy making level. Community leaders should attend health seminars and health promotion events to better educate themselves on health matters that affect their community. The different ethnic minority communities can play a vital role in maximising health outcomes for their population, they can include health information on radio shows, feature health articles in ethnic minority publications, use art, drama, and entertainment to deliver underlying health messages, and the community can involve people of the same ethnicity in the public eye to influence health behaviour changes in the ethnic minority community and raise awareness on health issues that mainly affect that population. There are ethnic minority recognised events such as the Notting Hill Gate Carnival and the Black Hair and Beauty Show that can be utilized by both health care providers and community groups to pro102

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mote health literacy on a larger scale. Faith groups also provide a platform to deliver health information to very large audiences. Information about illnesses prevalent in ethnic minority communities can be delivered and endorsed by faith leaders to encourage and spur community members to be more active and engaged when it comes to health information that could enhance the quality of life for members. Community participation is a major player in supporting health care systems to deliver an excellent standard of health literacy to ethnic minority populations but is currently undervalued and underutilised. Community leaders have a powerful voice and should use it loudly to orchestrate and advocate for better health outcomes for their people.

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FUTURE RESEARCH DIRECTIONS Health literacy has evolved a great deal in the last 30 years and has developed into a concept that can be employed in health systems to benefit patients individually, in the community, and in the health organisation. There is ample evidence through research and practice that optimizing health literacy can deliver the goals of Health 2020, to provide a health system focused on the needs of the people it serves. As research has shown, there is still much to do to increase health literacy for individuals and the community and remove barriers inadvertently or advertently placed in the way of individuals trying to navigate the healthcare system, by the organisations with which they are trying to engage. (Palumbo,2016). Therefore, more needs to be done to increase the health literacy levels in the population, because as evidenced by the studies in the US, the Netherlands, and the pilot in the UK, health literacy can be distributed through the community. More research needs to be done into the efficacy of existing methods and exploring new and more efficient ways to measure and thereby harness health literacy of individuals. Further, there needs to be more research into how health originations can be more health literate by implementing methods and procedures already identified as necessary. (Palumbo, 2016) It is conceivable that the organisations’ structures can be adjusted to accommodate being more health literate because optimizing health literacy needs organisations and individuals to all be health literate in order to work together to tailor the healthcare delivery to the health needs of the community. It is entirely possible that once the individuals and community become more health literate, they will become more knowledgeable about what the community wants and needs. For ethnic minority groups specifically, there is a lack of research on diseases prevalent in these populations and research about how and why it progresses in the community. There should be more collaborations with higher institutions in countries in Africa and Asia regarding diseases prevalent in those regions. Even something as fundamental as the Body Mass Index (BMI), which is calibrated for the Caucasian body, is not adjusted for differences in the ethnic minority body which are significant when calculating eGFR (Glomerular Filteration Rate) in kidney patients, for example, because it depends on body size, age, and gender. These are relevant to the patient, especially if they are health literate and want to engage in their care. More research around the diseases that affect ethnic minority populations and how and why they progress will help the health professionals and health systems better serve this community and impact the health inequalities that plague this population group. It is an exciting prospect that optimizing health literacy might achieve what has previously eluded governments, policy makers, and social researchers alike.

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 Health Literacy and Ethnic Minority Populations

CONCLUSION There is health inequality in ethnic minority populations in the UK that adversely affects their access to healthcare, and thereby adversely affects their health outcomes. Optimizing health literacy is a proven way to address these health inequalities, as health literacy is wide in scope and form and can be applied to fit the community. However, there is still much to be done, as organizational health literacy is still in its infancy, and is needed, together with a development of individual and community health literacy to optimize health literacy and decrease inequalities. There is an opportunity for health literacy in the community to overcome many of the difficulties of enhancing individual health literacy within health systems, but this can only be optimized when health organizations become more health literate by removing barriers that prevent individual patients (and by extension the community) from optimizing their health literacy.

ACKNOWLEDGMENT This research was supported by the Community Interest Organisation, Gift of Living Donation (GOLD) and NHS Blood and Transplant (NHSBT).

REFERENCES Asaria, M. (2017) The economics of health inequality in the English NHS – the long view (Centre for Health Economics Research Paper 142). University of York. Batterham, R., Hawkins, M., Collins, P., Buchbinder, R., & Osborne, R. (2016). Health literacy: Applying current concepts to improve health services and reduce health inequalities. Public Health Journal, 132, 3–12. doi:10.1016/j.puhe.2016.01.001 PMID:26872738 Berry, J. (2016). Does Health Literacy Matter? Retrieved on 24 May 2017 from https://www.england. nhs.uk/blog/jonathan-berry/

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Buffin, J., Jain, N., Little, R., & Warrens, A. N. (2015). A peer outreach initiative to increase the registration of minorities as organ donors. Clinical Kidney Journal. Retrieved on 11 June 2017 from https:// www.ncbi.nlm.nih.gov/pmc/articles/PMC4581384/ Burnapp, L. (2017). Organ donation transplantation acceptance, empowerment and choice in living donor kidney transplantation (Unpublished internal report). NHS Blood & Transplant Advisory and Dissemination Board. Cookson, R., Propper, C., Asaria, M., & Raine, R. (2016). Socioeconomic inequalities in health care in England (Centre for Health Economics Research Paper 129). University of York. Epstein, R. M., Fiscella, K., Lesser, C., & Stange, K. C. (2010). Why the nation needs a policy push on patient-centered health care. Retrieved on 11 June 2017 from http://content.healthaffairs.org/content/29/8/1489.short

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Ismail, S. Y., Luchtenburg, A. E., Timman, R., Zuidema, W. C., Boonstra, C., Weimar, W., . . . Massey, E. K. (2014). Home-based family intervention increases knowledge, communication and living donation rates: a randomized controlled trial. Retrieved on 11 June 2017 from http://onlinelibrary.wiley.com/ doi/10.1111/ajt.12751/ Jakab, Z., Celarc, M., & Ossinovski, J. (2016). Introducing the 20th Ljubljana Charter Anniversary issue. Eurohealth (London), 22(2), 2. Kline, R. (2014) The snowy peaks of the NHS: a survey of discrimination in governance and leadership and the potential impact on patient care in London and England. Retrieved on 15 June 2017 from https:// www.england.nhs.uk/wp-content/uploads/2014/08/edc7-0514.pdf Kline R., (2015). Beyond the snowy white peaks of the NHS? Better Health. Retrieved on 31 May 2017 from Betterhealth.org.uk Matthews, D. (2015). The impact of ethnicity on health inequalities. Nursing Times, 111(44), 18–20. PMID:26665383 McPherson, W. (1999). The Stephen Lawrence inquiry – report of an inquiry retrieved on 14 June 2017 from https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/277111/4262.pdf National Centre for Social Research. (2014). 30 years of British social attitudes self-reported racial prejudice data. Retrieved on 15 June 2017 from https://diversityuk.org/wp-content/uploads/2014/06/ selfreported-racial-prejudice-datafinal.pdf Office for National Statistics. (2012). Ethnicity and national identity in England and Wales: 2011. Retrieved on 13 June 2017 from /www.ons.gov.uk/peoplepopulationandcommunity/culturalidentity/ ethnicity/articles/ethnicityandnationalidentityinenglandandwales/2012-12-11 Palombo, R. (2016). Designing health-literate health care organization: A literature review. Health Services Management Research, 29(3), 79–87. doi:10.1177/0951484816639741 Raynor, D. K., (2012). Health literacy – Is it time to shift our focus from patient to provider? British Medical Journal. doi:102236/bmj.e2188

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Rodrigue, J. R., Paek, M. J., Egbuna, O., Waterman, A. D., Schold, J. D., Pavlakis, M., & Mandelbrot, D. A. (n.d.). Making house calls increases living donor inquiries and evaluations for blacks on the kidney transplant waiting list. Retrieved on 24 May 2017 from https://www.ncbi.nlm.nih.gov/pmc/articles/ PMC4218873/ Rowlands, G., Protheroe, J., Winkley, J., Richardson, M., Seed, P., & Rudd, R. (2015). A mismatch between population health literacy and the complexity of health information: An observational study. The British Journal of General Practice, 65(635), 296–297. doi:10.3399/bjgp15X685285 PMID:26009533 The European Network Against Racism. (2014). Invisible visible minority – confronting Afrophobia and advancing equality for people of African descent and black Europeans in Europe. Brussels: European Network Against Racism.

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Waterman, A. D., Morgievich, M., Cohen, D. J., Butt, Z., Chakkera, H. A., Lindower, C., … LaPoint Rudow, D. (2015). Living donor kidney transplantation: improving education outside of transplant centers about live donor transplantation – recommendations from a concensus conference. Clinical Journal of the American Society of Nephrology. Retrieved 17 May 2017, from https://www.ncbi.nlm.nih.gov/pmc/ articles/PMC4559502/ World Health Organisation. (2013). Health literacy the solid facts. Retrieved on 14 May 2017 from http:// www.euro.who.int/__data/assets/pdf_file/0008/190655/e96854.pdf

ENDNOTES 1



2



3



4



The authors in this context do not merely refer to ethnic diversity, as the English, Scottish and Northern Irish population have distinct culture, habits, life style and characteristics which have an impact on their health and therefore healthcare delivery. There is also a political distinction, due to devolution, which means the delivery can be materially different in the different countries. This was an inquiry into the conduct of the police following the death of a black teenager, Stephen Lawrence, which found that the police were institutionally racist. The Ljubljana Charter on Reforming Health Care in Europe and The Tallinn Charter: Health Systems for Health and Wealth. There is ample evidence that the disadvantages ethnic minority populations face results in discrimination throughout life and has an impact on identity. The European Network Against Racism (2014) published a book, Invisible Visible Minority, in which it asserted that European people of African descent (black Europeans) were so discriminated against in Europe that there should be a formal definition of racism against black people called Afrophobia.

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This research was previously published in Optimizing Health Literacy for Improved Clinical Practices; pages 210-227, copyright year 2018 by Medical Information Science Reference (an imprint of IGI Global).

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Section 2

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Media Influence and Support

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Chapter 7

Portraying Rare and Misdiagnosed Diseases in Movies:

A Content Analysis, 1980-2018 Liliana Vale Costa https://orcid.org/0000-0003-2451-3073 University of Aveiro, Portugal & DigiMedia, Portugal Ana Isabel Veloso https://orcid.org/0000-0002-5070-0756 University of Aveiro, Portugal & DigiMedia, Portugal

ABSTRACT

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This chapter examines the portrayal of rare and misdiagnosed diseases in 9 movies from 1980 to 2018. The analysis embodies the representation of rare diseases and the suggested audiovisual strategies to comprehend the message conveyed. Most of the movies introduced the disease by highlighting its symptoms. The binomial culture of cure and care often emerges, as well as the patient’s desire for the mundane pleasures in life and over dependence in a health system. The high hopes in research advances and lack of information are majorly covered in the caregivers’ attempts to seek tests and drug trials and their mediator’s role in patient-physician interactions. The audiovisual strategies adopted vary between the accelerated montage to communicate the contrast between the frenetic side of everyday life and the patient’s process of coping with the disease, deep focus from patients to parents, and close-ups to show the individual’s reactions and perspectives.

DOI: 10.4018/978-1-6684-2414-8.ch007

Copyright © 2022, IGI Global. Copying or distributing in print or electronic forms without written permission of IGI Global is prohibited.

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 Portraying Rare and Misdiagnosed Diseases in Movies

INTRODUCTION In an increasingly visual-oriented society, scholars (e.g. Grushka, 2009; McDonagh, Goggin,& Squier, 2005; Miguel, 2016; Müller, 2008; Sweeny, 2004) have been more and more interested in the way that visuals can facilitate individuals’ “meaning-making” (Fei, 2007; Harrison, 2003) through the use of such elements as semiotics, perceptual theory, psychosocial factors and aesthetics that are often used to transmit pieces of data, information and emotion in multiple media (Hortin,1994). Indeed, visual composition, syntax and elements are so omnipresent in the representation of an individual’s actions, objects and symbols that they may consciously or unconsciously have a strong impact on empathic relationships, actions, self-perception, decision-making and behavior change (Gumpert & Cathcart, 1985; Hortin,1994; Messaris, 1998). In the medical context, visual language is also used to transmit information about, for example, the portrayal of common symptoms and the representation of a certain disease (i.e. representation in medical literature, arts of Italian Renaissance, epidemic cartoons and TV series) (Gilman, 1998). But also in cartographies of epidemics (Koch, 2011), wayfinding, labelling and signage design in health care environments (Delvin, 2014; Hashim, Alkaabi, & Bharwani, 2014; Pati, Harvey Jr., Willis, & Pati, 2015) and in media campaigns (Randolph & Viswanath, 2004; Wakefield, Loken, & Homik, 2010). In these different media, health-related communication may also rely on allegories (e.g. Niemiec, 2010), parallels (Eysenbach, 2008; Koplan, 2003), non-verbal – e.g. gestures (Asan, Young, Chewning, & Montague, 2015; Bickmore et al., 2010), and metaphors (Krieger, Parrott, & Nussbaum, 2010). As Evers (1969, p.34, cf Hortin,1994, p.16) puts it:

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Movies, photographs, commercials and even printed statements are representations of reality. They are metaphors, and therefore must be understood as metaphorical points of view. That is what mediacy is about (Evers, 1969, p.34 cf Hortin, 1994, p.16) The use of movies in the medical context and its impact on stigma and attitudes towards certain illnesses or health education have been widely covered (e.g. Banos, 2007; Damjanović, Vuković, Jovanović, & Jašović-Gašić, 2009; Pirkis, Blood, Francis, & McCallum, 2006). However, its use to foster discussion, create awareness towards orphan drugs and demystify the challenges of rare disease research have been quite overlooked. The aim of this chapter is to examine the portrayal of rare and misdiagnosed diseases in movies from 1980 to 2018. In specific, the messages that are transmitted relative to the disease, ethical dilemmas, interaction among different health stakeholders, and the audiovisual strategies used to convey such messages (camera movements, color, lighting, montage, among others). This chapter is structured as follow: The next section discusses the use of movies to convey healthrelated information, providing a brief overview of cinematography in the story-making process. The International Rare Disease Festival is presented as an example of an initiative that is paving the way into the use of movies as a medium to meet this purpose. It proceeds with the process of movie selection, the content categories used and data collection. The results section examines the way rare diseases are portrayed in movies and the audiovisual strategies used. The chapter concludes by summarizing the main audiovisual strategies used in movies and its purpose to convey a certain meaning to the information provided and portrayal of rare diseases.

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 Portraying Rare and Misdiagnosed Diseases in Movies

HEALTH-RELATED INFORMATION IN MOVIES A considerable amount of literature has been published about the use of movies to medical education – e.g., González-Blasco, Delgado-Marroquín, Moreto and Altisent (2019), Membrives, Isem, and Matheu (2016) and Ali (2014). Indeed, movies can play a prominent role in fostering information literacy in the context of health considering the fact that they communicate a story visually and may elicit emotions with a strong impact on decision-making and behavior change. However, it is worth noting that cinema verité continues to challenge health representation in such medium, being it often influenced by collective myths, fantasies and stigma. Some of the common health-related themes covered in movies are: •

•

• • •

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•

•

Psychiatry education and therapist-patient relationships: psychiatry disorders that are covered in movies are varied – e.g. delirium, dementia, schizophrenia, addiction, mood and personality disorders (Byrne, 2009; Cape, 2009; Dave & Tandon, 2011; Tobia, et al., 2016; Wilson, Heath, Heath, Gallagher, & Huthwaite, 2014). There is a general perspective of distrust in people diagnosed with a mental illness and a dualism between facts and fiction and the demonization of psychosis (Byrne, 2009; Datta, 2009; Gabbard, 2001; Hyler & Moore, 1996; Menon, & Ranjith, 2009; Tobia et al., 2016), in which doctor-patient relationships are explored (Virzi, et al., 2011); Dermatology portrayal: a study conducted by Vail Reese (1995) relative to the portrayal of skin and cutaneous diseases has revealed that skin abnormalities are used as a representation of evil and villains in filmmaking (e.g. skin diseases, facial acne, albinism, rosacea…). The misrepresentations of skin conditions and diseases in cinema often influence stigmatization, attitude and demand for plastic surgery; Teaching Psychopathology: one of the common topics covered in the movies has been the risks of depression, suicide, posttraumatic stress, personality disorders (Hyler & Moore, 1996), human consciousness and death representation (Knox, 2006; Jung, 2012); Cine-film medical teaching: cinefilms and documentaries have been often used in order to show cinematography surgeries (Krementsov, 2015) and medical operations (Essex-Lopresti, 1998; Van Dijck, 2002); Cinema verité and health dilemmas: beyond ethical concerns, the tension and confronts between health professionals, patients, caregivers and society in health-related decision making have been often explored (Little, Kahn, & Green, 1999). The ethical dimension and confidentiality are often a topic that emerges in movies that cover health-related information (González-Blasco, DelgadoMarroquín, Moreto, & Altisent, 2019); Cinematic depictions of Physicians/Psychiatrists and Stereotypic representation of diseases: physicians and, especially, psychiatrists are often represented characters, whom are feared, heroic or evil (Cashman, 2019; Gabbard & Gabbard, 1999; Kalra, 2012; Scott, 2014), and these myths and fantasies may have an impact on patients daily basis and interactions with their physician/ psychiatrist (Gabbard, 2001; Kelly, 2006). There are also a number of stereotypic representation of diseases in the movies, for example, multiple sclerosis (Karenberg, 2008) and oncological diseases (De Fiore, et al., 2014); Fostering observational learning and empathy: movies may act as imagery symbols and metaphors, inciting emotions, empathy with the characters (understand the character’s motivation and

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 Portraying Rare and Misdiagnosed Diseases in Movies

behavior) (Akram, O’Brien, O’Neill, & Latham, 2009) and observational learning (Schulenberg, 2003). In the subsections that follow, the process of story-making through cinematography will be introduced and current work undertaken in the portrayal of rare diseases in movies will be presented.

Story-Making Through Cinematography The process of telling stories and providing meaning to actions through moving images has evolved throughout time. In fact, cinema has adopted a visual language to communicate ideas, actions, emotions and tones, in which the process of telling through moving pictures is the subject of interest to the cinematography field. The linear Aristotelian narrative structure (i.e. from the exposition/inciting moment, climax and resolution) has evolved to integrate both an illusion of continuity and a spatial, temporal and linear discontinuity (Sesonke, 1980), delving into a much more dialectical approach. Specifically, the Gestalt Law of Perceptual Closure is essential to understand this illusion of continuity in the presentation of different pieces of information that are perceived as a whole (Coren & Girgus, 1980). As Eisenstein (1938/42, p.32 cf Barry, 1994, p.129) puts it: […] the spectator is compelled to proceed along that self-same road that the author travelled in creating the image … the spectator not only sees the represented elements of the finished work, but also experiences the dynamic process of the emergence and assembly of the image just as it was experienced by the author […] (Eisenstein, 1938/42, p.32 cf Barry, 1994, p.129) For that, montage had been a key tool to story-making, reinforcing the visual tension between past and present, space and rhythm. The following are some of the montage techniques: • •

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•

Parallel montage: parallel montage occurs when two geographically distance actions are perceived as simultaneous; Accelerated montage: accelerated montage refers to the process of shortening the video length or duration and increase the speed, in order to transmit the idea of excitement and rhythm; Montage of attraction: montage of attraction is relative to the use of objects, expressions and ideas organized in a certain sequence in order to produce specific stimuli, elicit certain emotion and change the viewer’s perception (Begin, 2006; Kuiper, 1961). In this type of montage, the Kuleshov Effect is often used, in which the viewers’ perception towards a certain sequence of shots is changed, in comparison with a single shot (Prince & Hensley, 1992).

If, on the one hand, cinema can present viewers with illusory effects and play with some psychology theories (e.g. Kuleshov Effect, Object petit a), on the other hand, this medium also represents everyday life by establishing interrelationships among one’s reality, society, and symbols in a plain simulacra, as posited by Baudrillard (1994). Movies can also unravel some ‘truths’ by documenting life-as-it-is. This principle of unraveling the ‘truth’, through a Kino-Eye, is defended by Dziva Vertov (1984, p.66). In his book Kino-eye: the writings of Dziga Vertov, he writes:

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 Portraying Rare and Misdiagnosed Diseases in Movies

The establishment of a visual (kino-eye) and auditory (radio-ear) class bond between the proletariats of all nations and lands on a platform of the communist decoding of world relations. The decoding of life as it is. […] Instead of surrogates for life (theoretical presentations, film-drama, etc.) carefully selected, recorded, and organized facts (major or minor) from the lives of the workers themselves as well as from those of their class enemies. (Vertov, 1984, p.66) Having present these diverse perspectives towards movie pictures and given that one of the main goals of this chapter is to identify the audiovisual strategies used to convey certain messages, a brief overview of some strategies beyond montage and its possible meaning are provided below: •

•

•

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•

Different shots for different situations and inherent meaning: A movie scene can embody different shots: (a) Wide and distant shots may be used to show the environment or transmit isolation with the reinforcement of the color scheme (cool or warm); (b) Establishing shots open the scene and inform the viewer about the location (possibly creating some ambiguity between telepresence and self-awareness); and (c) Close-ups to show character’s reactions; Point-of view shots (POVs) to communicate the character’s interactions with others and conflicts: POVs aim to involve the viewers in the story by seeing and experiencing what the character is seeing and representing, in an empathic interaction. Some of the cinematic elements that are often used are: (a) over-the-shoulder (OTS) by filming over the shoulder of an actor; and (b) glancing into a rear-view mirror in order to unravel key elements that can impact on the whole story; Interplay of Visual Principles: A set of visual principles also apply to the cinematographic language – e.g. unity (the organization of elements in such a way that is perceived as only one single unit), balanced vs unbalanced composition in mis-en-scène (placing on the frame), rhythm and directionality (by creating patterns through the use of repetition and indicate the direction where the viewer should look at through camera movements, eyes pointing the direction and visual weight), Proportion (through deep focus, proximity and distortion of angle lenses), Contrast (allude to emotional and spatial relationships through the use of light and shadow), Emphasis (e.g. Hitchcock’s basic rule - the importance of an object in the story should match its size in the frame); and Hierarchy (e.g. depth of field and camera angles); Communicating through Space Compression and Expansion, Camera Movements and Positive/Negative Spaces: Space compression can communicate the tightness of a place and a claustrophobic environment, whereas its expansion distorts it. Camera movements direct the viewer’s gaze direction to what is happening (e.g. panning, tilt, move in/out, zoom in/out, punchin and moving shots) and positive-negative space often suggests if it is in or out of balance depending on a distant or closer viewpoint or an active/observational role from the viewer.

Other strategies related with sound, lightening, directing and editing may follow but for this chapter they are not covered, as the essential has been introduced in order to provide the general context of this study. The following section presents the Rare Disease Film Festival as an example of an initiative that intertwines movie-making and rare diseases.

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 Portraying Rare and Misdiagnosed Diseases in Movies

The Rare Disease Film Festival The Rare Disease Film Festival is an event that gathers filmmakers, patients, caregivers, researchers, patient advocates, health professionals, researchers and general community to discuss and share their experiences and stories about rare diseases. Such initiative shows the movies, short movies, documentaries and short animations that fosters conversations and collaborations between stakeholders with different experiences and knowledge basis, paving the way into research and science support. All the information is compiled in the website https:// www.rarediseasefilmfestival.com (Figure 1).

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Figure 1. Rare Disease Film Festival, https://www.rarediseasefilmfestival.com (Access Date: August 23, 2019)

Among the diseases covered in these films are: Batten, Sanfilippo, Epidermolysis bullosa, GAN, Angelman’s Syndrome, PACs1 Syndrome, Goldenhar Syndrome, Congenital Disorders of Glycosylation, GM1 Gangliosidosis, Vader syndrome, Charcot-Marie-Tooth Syndrome, Sickle Cell Anemia, Spina Bifida, Autism, Lafora Disease, SMA, PGAD, Pfeiffer Syndrome, Cystic fibrosis, Wilson Disease, Duchenne and Becker muscular dystrophy, MS Multiple Sclerosis, Bosch-Boonstra-Schaaf Optic Atrophy Syndrome (BBSOAS), Friedreich’s ataxia, Hemophilia, Fraser Syndrome, Synesthesia, Myotubular Myopathy, Tay-Sachs, GM1, leukodystrophy, Huntington’s Disease, Von Hippel-Lindau Syndrome (VHL), Cerebral palsy, USP7, Degenerative Neurological Disorder, NGLY1, Menkes Syndrome (Menkes Disease), Fragile X, Niemann Pick type c, Mitochondrial Disease and Hunter Syndrome MPS. From this website, the movies ‘Cuerdas (2014)’, ‘Imagine (2015)’, and ‘Ian (2018)’ were selected considering that they were available on the website and did not follow the format of a health or advocacy group campaign, which was not the focus of this chapter, and a thorough analysis from the advertising and marketing lenses would be needed.

METHOD This chapter examines the portrayal of rare and misdiagnosed diseases in movies from 1980 to 2018. A content analysis was performed in order to get insights into the messages that are transmitted, and the

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 Portraying Rare and Misdiagnosed Diseases in Movies

audiovisual strategies used to convey such messages. Therefore, the imdb and rare disease festival database were searched in order to find movie titles addressing “rare diseases”, excluding foundation campaigns. Out of 29 movies, twenty were excluded owing to lack of access or its focus, leaving 9. Table 1 gives an account of the selected movies. The inclusion criteria were: (a) Being published in imdb and rare disease festival database from 1980 to 2018; and (b) reference to the term “rare disease” in the title or movie description. The exclusion criteria were: (a) Lack of access; and (b) Focus on foundation campaigns. The video scripts were re-read and analyzed, aiming at identifying the interactions, values and attitudes of different role characters towards rare and misdiagnosed diseases. Data was qualitatively analyzed. Table 1. Movies depicting rare or misdiagnosed diseases selected for content analysis Year

Movie

Genre

Rare or Misdiagnosed Disease Portrayed

1980

The Elephant Man

Biography/Drama

Proteus Syndrome2

1992

Lorenzo Oil3

Biography/Drama

Adrenoleukodystrophy (ALD) 4

2013

Life According to Sam5

Documentary, Biography/Drama

Progeria or Hutchinson-Gilford Progeria Syndrome6

2014

Cuerdas7

Animation

N/A (Palsy)

2015

Imagine

Short Movie Biography/ Drama

Niemann-Pick Type C (NPC) 9

2015

In Crystal Skin10

Documentary

Epidermolysis bullosa (EB)11

2016

Brain on Fire12

Biography/Drama

Anti-NMDA receptor encephalitis13

2018

Ian14

Animation

N/A (Cerebral Palsy)

2018

Midnight Sun

Drama/Romance

Xeroderma pigmentosum (XP) 16

1

8

15

It is worth noting that although the animations are not specific in terms of the disease covered, they were the only movies in the category ‘Animation’ that were highlighted in the website of the Rare Disease Film Festival and covered the socio-cultural aspect of the pediatric patients’ limitations and disease coping.

Content Categories The content analysis embodied the following categories:

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•

•

Portrayed Rare Disease: This category refers to the way rare diseases and associated health stakeholders are represented in the movies, namely, the disease description and symptoms, ethical dilemmas, physician-caregiver-patient communication, patients’ self-image and integration in society, the role of the caregiver, use of information search tools, and the advancements/challenges found in research; Audiovisual strategies used: This category embodies camera movements, color and lighting, sound, montage techniques, composition, camera shots and angles.

Both verbal and nonverbal messages were taken into account and after viewing each movie and rereading video script, each passage that supported each category was highlighted with a side note. In the end, all notes and statements from each movie were compared in order to find repetitive patterns.

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 Portraying Rare and Misdiagnosed Diseases in Movies

A total of 458 minutes from the 9 movies were analyzed from June 15, 2019 to August 10, 2019.

Data Analysis Following the pre-determined categories (i.e. Portrayed Rare Diseases and Audiovisual Strategies), the corpus of analysis (text and video clips) were coded and compared.

RESULTS Based on the content analysis performed in this study, Table 2 shows an overview of the portrayed rare diseases and audiovisual strategies used in movies from 1980 to 2018. As shown in Table 2, most of the movies introduced the disease by highlighting its symptoms. For example: It is believed that the main character (Joseph Merrick) had Proteus Syndrome2 that is characterized by skeletal and blood vessel malformations, tumors, tissue overgrowth and pulmonary disease – i.e. “[…] the alarming curvature of the spine […] the looseness of the skin and the varying fibers/tumors that cover 90% of the body[…] The patient also suffers from chronic bronchitis […]” – In The Elephant Man (1980) The main character is diagnosed with Adrenoleukodystrophy (ALD) that is X-linked recessive genetic occurring only in males whose mother is a defective gene carrier. It is often characterized by adrenal insufficiency, abnormalities in blood pressure, attention deficit and progressive loss of vision, cognitive, motor and intellectual capacities. – In ‘Lorenzo Oil’ (1992)

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The main character is diagnosed with Xeroderma pigmentosum (XP) that is characterized by the sensitivity to DNA to ultraviolet radiation, leading to its damage and affect the skin, eyelids, eyes’ surface, tip of the tongue and may possibly lead to neurodegeneration and hearing loss – i.e. “[...]XP, which means a severe sensitivity to sunlight. If sunlight so much as glances off my skin. I’ll get skin cancer, and my body can’t repair the damage so my brain starts to fail – which could mean hearing loss, difficulty in hearing loss, difficulty in walking and swallowing, movement problems, loss of intellectual functions and capacity for speech, seizures and, oh yeah, death.”, “XP generally lies dormant until a triggering event.”- In Midnight Sun (2018) The binomial culture of cure and care is often emerged, as well as the patient’s desire for the mundane pleasures in life and overly dependence in a health system. The following passages are illustrative of these observations: Culture of cure vs Culture of care – i.e. “If loving kindness can be called care and practical concern, then I did show loving kindness […]”, “We can care for you, but we can’t cure you.” – In ‘The Elephant Man’ (1980) Patient’s desire for a normal life, e.g. “I wish I could ride any roller coaster […]”, “I kind of just want my mom to be done with progeria for her sake […]” – In ‘Life According to Sam’ (2013) 115

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• Merrick’s body is presented as “object petit a” (Lacan, 1901) in the first part of the movie, by being absent from the visual field, inaccessible – i.e. film-cuts as a character (Treves) walk, forbidden symbols “No entry” and initial failed encounters with Merrick, who remains hidden (180º movement camera when the main character is exposed, in-front camera when he is hidden), curtains and spotlights • Close-ups of characters’ reactions – e.g. begin to cry when there is a closeup, emotional character engagement (Kember, 2004). • Morale fable by emerging bioethical and socio-ethical – protection vs exploitation, moral worth, Merrick’s death • Contrast between light/white (effect) and black/shadow/darkness (tension) • Sound repetition – i.e. breath, heartbeat, clock ticking, footsteps, mechanical sounds (Fernandes, 2015)

• Morale fable by emerging ethical concerns regarding life-prolonging in child; • Dramatic opera music – anticipate the patient diagnosis and is lifethreatening; •Montage by attraction – e.g. between dad’s face and the studies relative to ALD; • ‘Ghosting’ between research books (such words as mute, coma, death) and Lorenzo’s dad. Recency effect - Repetition of the word ‘death’; •After searching for the disease in the library for the first time – there is a scene of the father in the stairs, using the bird’s Eye View (aka Top Shot) as he was lost in an information labyrinth; • Vignette of a number of male ALD patients who used Lorenzo’s Oil; • Side Dolly camera movement between the hospital corridor and the Lorenzo’s mother on the phone, showing the contrast between one’s passivity and proactivity; • Close-ups in the boy’s mother in order to show their emotions – e.g. intense sense of sadness, guilty, tiredness, despair; • Choosing the Lorenzo’s anniversary as a landmark to the change in his condition (indicate “time passing by”).

• Close-ups and extreme close-ups to show an intimate interaction with the character; • Use a “shallow” depth of field - limit the audience can see beyond the focus (i.e., fingers, hands, eyes) and create a very “tactile” world, within the character’s ‘bubble’; • Follow the characters very close to reinforce this intimacy.

• It is believed that the main character (Joseph Merrick) had Proteus Syndrome that is characterized by skeletal and blood vessel malformations, tumors, tissue overgrowth and pulmonary disease – i.e. “[…] the alarming curvature of the spine […] the looseness of the skin and the varying fibers-tumors that cover 90% of the body[…] The patient also suffers from chronic bronchitis […]” • Culture of cure vs Culture of care – i.e. “If loving kindness can be called care and practical concern, then I did show loving kindness […]”, “We can care for you, but we can’t cure you.” • Physician-patient communication (diagnosis process): 1.Reference to a caregiver as a mediator (“your owner tells me – I mean, the man who looks after you”), 2. Use of non-verbal communication (e.g. nodding); 3. Assessment of a congenital and hereditary disease (“Have you always been the way you are now?, […] Are your parents still alive?”) and pain (“Are you in any pain?”) • Patient’s desire for a normal life – i.e. “I wish… I could sleep…like normal people.” • Integration in society and self-image – i.e. “He is a freak!”, “[…] under no circumstances…whatsoever…are any mirrors to be brought […].”, “He’s so ugly.”, “I am not an animal. I am a human being!” • Vulnerability from others who take advantage from the patient and condition – i.e. “But all you do us profit from another man’s misery”, “On the move again… my treasure”, “People pay to see your monster.”

•The main character is diagnosed with Adrenoleukodystrophy (ALD) 4 that is X-linked recessive genetic occurring only in males whose mother is a defective gene carrier. It is often characterized by adrenal insufficiency, abnormalities in blood pressure, attention deficit and progressive loss of vision, cognitive, motor and intellectual capacities. In the movie, teachers notice that something is strange in Lorenzo’s behavior, confusion with the Attention Deficit Hyperactivity Disorder (ADHD) and suggest a special aid class, which parents refuse. There is some uncertainty revealed during the diagnosis process, “It’s quite rare. The leukodystrophies […] ALD is an inborn error of metabolism that causes a degeneration of the brain. It only affects males, usually between the ages of five and ten. Its progress is relentless. The end is inevitable.”, “Well, to be honest, we’re not quite certain just how it works.” •Physician-caregiver communication: 1. Confront with the lack of information, time and health stakeholders’ pace to treat the disease – “[…] the doctors are in the dark.”; “[…] they will tell us in their own time.”, “So what you’re saying is that our children are in the service of medical science. How foolish of me. I always assumed...that medical science was in the service of the sufferers.”, “There’s no mathematical certainty. And because we deal with human beings who suffer, it can appear heartless.” •The need of different knowledge bases to understand the disease – i.e. “[…] we need a command of genetics, biochemistry… microbiology, neurology […]”; “All these experts, working in isolation, each one on his own piece of the jigsaw” •Lack of investment in rare diseases, “Ours is what is known as an orphan disease. It’s too small to be noticed, too small to be funded…” • The caregiver’s role and emotional burnout – i.e. “She doesn’t want nobody. She’s too angry.”; “Our parents suffer enough without being made the victims of false hopes.”

• The main character Sam is diagnosed with Progeria or Hutchinson-Gilford Progeria Syndrome6 that is characterized by premature ageing – “What is aging in Sam, is aging in all of us. But in his body, the process is accelerated. There is no cure for progeria.”, “Progeria is known as a pre-ageing syndrome. It doesn’t age all the senses because a 13 year- old has a 13-year old mind and doesn’t have cataracts and does not have cancer or other problems. But from the cardiovascular point of view, these kids all develop cardiovascular disease.” • Hope in research advancements and lack of funding, “The physician was sorry, but there was no research” • Lack of information about the disease, “When Sam was diagnosed with Progeria in 1998, there was nothing out there. There was no research going on, treatment, cure, or foundation to go to.” • Patient’s desire for a normal life, e.g. “I wish I could ride any roller coaster […]”, “I kind of just want my mom to be done with progeria for her sake […]” • Dependence on a health system – medication and clinical trials, “The gold standard of a clinical trial is testing the drug on hundred, if not to say, thousands of people and half of the people get the drug and half doesn’t […]”

The Elephant Man (1980) 1

Lorenzo Oil (1992) 3

Life According to Sam (2013) 5

continues on following page

Audiovisual strategies used 2

Portrayed Rare Disease

Movie

Table 2. Overview of the Portrayed Rare Diseases and Audiovisual strategies used in movies

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• The narrator of the story is the patient – repeats the opening statement at different stages of the disease (“My name is Miller. I’m 10 years old”) and creates awareness to the short life period of these patients by ending with the statement (“I’m 10 years old. I will always be 10 years old.”); * Deep focus from the patient with the nurse to the parents and physician; *Confront between the parents and the physician: Over-the shoulder the physician to focus on the parents’ reactions and close-up of the physician; Close-ups following the direction of the characters’ looking at – from mother to father, from one to the other, to physician, to the patient who remains distant with the nursing care.

* Use of repetition and accelerated montage to show the frenetic rhythm of school and daily life activities; * Use of close-ups to show different perspectives, and parent’s emotions and feelings from the parents; *Mise-en-scene (e.g. photographs, ballerina box) * Light and temperature – bluish and grey

* Medium and long shots in order to show the whole environment, surroundings and all conditions; *Parallel montage (e.g. empty swings whereas the little girl is at home); *Low angle shot (upshot) to transmit the message of the importance of school to this family and the teacher as an authority. Natural setting as the place for shooting.

• Camera – from inside to outside vs outside to inside separated by a window – ‘care watch’. Close-up following a gestalt approach; • Choosing Susannah’s anniversary as a landmark to the change in his condition (indicate “time passing by”) • The patient begins to tell her story (Patient story) but with the evolvement of the disease her voice is replaced by dialogues and dialogues between her parents and doctors.

• Ghost effect – spinning in chair to indicate change and confusion. Predominance of white and blue – clinical ambience. Following shots many camera shootings from one side of the window to the other as the spectator had also the role to surveil the patient and her strange behavior, ‘keeping an eye on her’. • In some scenes, the character appears in front of the camera and then there is a smooth zoom-out, suggesting that she must be left behind by the spectator, with her own thoughts.

• The main character is diagnosed with Niemann-Pick Type C (NPC) that is characterized by the body’s inability to transport cholesterol and fatty substances, resulting in the its accumulation in body and brain tissues. The disease symptoms and information are referred: “[…] type of neurodegenerative disease which means Millie will start to decline both mentally and physically eventually.”; “I am finding so hard to learn. To concentrate […] I keep coughing when I am eating [...] I keep forgetting things […] I have physiotherapy now […] and I have to have speech therapy now.”; “How are the seizures? She’s having 5 maybe 6 a day.”; “Damage done is irreversible.” •Physician-caregiver communication: 1. Disbelief in the physician - “[…] It can’t be true. He’s wrong, isn’t he?”, 2. Ask for validation/ a ‘second’ opinion and (re-)test, 3. Confrontation (“And how are you coping with them?” “How do you think?), • The caregiver’s role and emotional burnout – i.e. “Tablets help me sleep”, “She cries a lot.”, “I work part time now.” • Use of Search Engine Optimization (SEO) tools to obtain further information about the disease and trials – i.e. “Leave it. You will only upset yourself again. Trials in America in America, something called cyclodextrin, we could go there.”

• Integration in society and self-image – i.e. “I am not sure what is wrong with me, but I know I am not like the others.”

• The main character has Epidermolysis bullosa (EB) 11 that is characterized by mechanical trauma and blister formation. This also may embody scars, musculoskeletal deformities and affect respiratory, gastrointestinal and genitourinary tracts (NORD). Although the disease is not mentioned, in the film, it shows the daily-life of a girl with EB with the wounds being treated by her mother and feeling of tiredness – “In the mornings when I wake up sometimes I don’t like to go to school…because the cold makes me very tired. My mom gets mad because she doesn’t want me to stay in bed.”; “I have my days when I’m delicate and other days when I’m doing much better.” * The important role of the caregiver and emotional burnout – e.g. “When Maria Alejandra was born, I had to become another part of her. I’m always with her, helping her.”; “My relationship with my Mom. She’s my best friend. She’s my gift. She’s the one I love the most.”; “When she has many wounds and doesn’t want to go to school, I want to run away.”

• The main character is diagnosed with the autoimmune disorder with rare diagnosis Anti-NMDA receptor encephalitis that is characterized by the lack of NMDA receptors that control the brain’s electrical impulses, having an impact on reality perception, patients’ memory, sleep, speech, vision, hearing, movement and leading to seizures. In patient’s words: “I feel really sick. You know, my head hurts, my stomach hurts, and my hand’s numb […]”, “Have you ever been trapped? Lost in your own body?”, “I guess, you could say that I’ve had these flu-like symptoms. I’ve had a lot of numbness on my left arm and leg. I feel my head really fuzzy all the time.” • Misdiagnosed disease – e.g. “How many people, do you think throughout history were diagnosed as schizophrenic, psychotic, bipolar, or maybe just being crazy, when they had something that could’ve been so easily diagnosed?”, “Any history of Lyme disease?”

• Use of Search Engine Optimization (SEO) tools to obtain further information about the disease – e.g. “I googled it.” •Physician-caregiver communication: 1. Disbelief in the physician “This ain’t some kids club, where you get to play doctor! This is my daughter’s life!”; 2. Excess of medicines: “I’m gonna give you a prescription for Olanzapine. It’s an anti-psychotic prescribed to treat mood and thought disorders. Take these pills and check back in with me.”; “she takes the anti-seizure meds I’d prescribed, and everything should be fine.”, “I’m gonna prescribe a Haloperidol. It should sedate her and also we could do some further testing.” • Integration in society and self-image – i.e. “It just feels weird.”, “She looks hungover.”, “I don’t think she’s acting normal, but I don’t think she’s on drugs.”, “I’m looking in her eyes, she’s looking at me. And I can tell that she’s not there.”

Short Movie Imagine (2015) 8

Short Movie Imagine (2015) 8

In Crystal Skin (2015) 10

Brain on Fire (2016) 12

Brain on Fire (2016) 12

continues on following page

Audiovisual strategies used

9

Portrayed Rare Disease

Movie

Table 2. Continued

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117

• Outdoor and indoor scenes are arranged in a comparative way – what is happening in the neighborhood and indoor. The window is the symbolic object that establishes the connection between inside and outside. Then, the perspective changes from indoor to outdoor at night. • Traditional emotional arc (A young girl has XP and can’t be out in the sunlight; despite being advised by her caregiver, she fails with it one day and her life is at risk. She realizes that she wants to adhere to a memorable experience outside with friends (go sailing), even if that means accelerating the process of dying; • Accelerated montage in which increasing speed is given when Kate goes out and having fun; • Morale socio-ethical – Kate’s death

• The main character is diagnosed with Xeroderma Pigmentosum (XP) that is characterized by the sensitivity to DNA to ultraviolet radiation, leading to its damage and affect the skin, eyelids, eyes’ surface, tip of the tongue and may possibly lead to neurodegeneration and hearing loss – i.e. “[...]XP, which means a severe sensitivity to sunlight. If sunlight so much as glances off my skin. I’ll get skin cancer, and my body can’t repair the damage so my brain starts to fail – which could mean hearing loss, difficulty in hearing loss, difficulty in walking and swallowing, movement problems, loss of intellectual functions and capacity for speech, seizures and, oh yeah, death.”, “XP generally lies dormant until a triggering event.” • Physician-caregiver communication (check status information): 1. Assess changes in a patient’s condition – “Have you noticed any changes in her motor function?”, 2. The need of the patients to be present in physician-caregiver communication “[…] but she should be coming to these appointments with you.” That evolves; 3. Reported symptoms – i.e. “If you notice any symptoms, Katie – unexpected shaking, muscle pain, loss of motor function – you have to promise to tell me immediately.”; • Use of Search Engine Optimization (SEO) tools to obtain further information about the disease. The important role of the caregiver in assisting the patient is recognized – e.g. “I did everything I was supposed to […].” • Integration in society and self-image – i.e. “When you tell someone you’re sick, then you start to become more likely a disease and less like a person.” Hope in research advancements and lack of funding – i.e. “People aren’t exactly flocking to fund for a disease that affects only one in a million […] drug trial ran out of money […].”

• Although there is not a specific disease represented in these animation (palsy + cerebral palsy), both animations cover integration in society and self-image.

Midnight Sun (2018)

Animation “Cuerdas”7(2014) and “Ian” (2018)

• Set scene: School Playground; • The interrelationships between the environment and groups/social interactions are represented through wide and medium shots; *The effect of the environment and groups on the individual are reinforced with camera close-ups.

Audiovisual strategies used

Portrayed Rare Disease

Movie

Table 2. Continued

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 Portraying Rare and Misdiagnosed Diseases in Movies

Furthermore, the high hopes in research advances and lack of information are majorly covered in the caregivers’ attempts to seek for tests and drug trials and their mediator’s role in patients-physician’s interactions. Hope in research advancements and lack of funding – i.e. “People aren’t exactly flocking to fund for a disease that affects only one in a million […] drug trial ran out of money […]” – In Midnight Sun (2018) Dependence on a health system – medication and clinical trials, “The gold standard of a clinical trial is testing the drug on hundred, if not to say, thousands of people and half of the people get the drug and half doesn’t […]”-In Life According to Sam (2013) Use of Search Engine Optimization (SEO) tools to obtain further information about the disease and trials – i.e. “Leave it. You will only upset yourself again. Trials in America in America, something called cyclodextrin, we could go there.” – In the Short Movie ‘Imagine’ (2015) The audiovisual strategies adopted also vary between the accelerated montage to communicate the contrast between the frenetic side of everyday life and the patient’s process of coping with the disease, deep focus from patients to parents, and close-ups to show the individual’s reactions and perspectives. The following are some of the examples: Use of repetition and accelerated montage to show the frenetic rhythm of school and daily life activities. Deep focus from the patient with the nurse to the parents and physician. – In the Short Movie ‘Imagine’ (2015) Accelerated montage in which increasing speed is given when Kate goes out and having fun. – In ‘Midnight Sun’ (2018)

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Close-ups in the boy’s mother in order to show their emotions – e.g. intense sense of sadness, guilty, tiredness, despair. In ‘Lorenzo Oil’ (1992) In summary, the portrayal of rare diseases in movies generally follow the structure: (a) Present the disease by showing its common symptoms; (b) Cover the antagonism between a culture of cure and a culture of care; (c) Explore the high hopes in research advances and the lack of information by showing the caregivers’ attempts to seek for tests and drug trials and mediator’s role in patients-physician’s interactions. Relative to the audiovisual strategies adopted, they vary between accelerated montage to communicate the contrast between the frenetic side of everyday life and the patient’s process of coping with the disease, deep focus from patients to parents, and close-ups to show the individual’s reactions and perspectives.

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 Portraying Rare and Misdiagnosed Diseases in Movies

CONCLUSION This chapter set out to examine the portrayal of rare and misdiagnosed diseases in 9 movies from 1980 to 2018, by analyzing the representation of rare diseases and the suggested audiovisual strategies to comprehend the message conveyed. Most of the movies that were reviewed introduced the disease by highlighting its symptoms. The binomial culture of cure and care has often emerged, as well as the patient’s desire for the mundane pleasures in life and overly dependence in a health system. In addition, the high hopes in research advances and lack of information were majorly covered in the caregivers’ attempts to seek for tests and drug trials and their mediator’s role in patients-physician’s interactions. Regarding the audiovisual strategies adopted in most movies, they vary between the accelerated montage to communicate the contrast between the frenetic side of everyday life and the patient’s process of coping with the disease, deep focus from patients to parents, and close-ups to show the individual’s reactions and perspectives. In sum, the chapter suggests several courses of action for understanding the audiovisual strategies that are often used to communicate a story visually and foster individual’s “meaning-making” within the health sector. Important limitations of this study, however, should be noted. Firstly, the sampling of the movies was limited to those that were found in the imdb and rare disease festival databases and which the authors had access to. Surveying rare diseases of only 9 movies may have, therefore, biased the prevalence of the strategies and language used. Considering the age gap of the movies analyzed, future considerations would be also interesting in to dividing the topics portrayed in the movies by decade and rare conditions portrayed. Secondly, the rare diseases which were analyzed seem to be focused into the ones of morphological or physical disabilities. Authors should consider cinematographic content that approaches also metabolic and mental disorders. Future studies need to be extended to the search of other databases and compare the strategies used to communicate the message in different video formats – e.g. documentaries, short movies, movies, animations, campaigns and compare the strategies used with the end-user’s attention, using eye-tracking. The authors of this Chapter are carrying out work in this area by analyzing audiovisual strategies and health-related communication within an online community context.

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ACKNOWLEDGMENT This work was supported by Fundação para a Ciência e Tecnologia and ESF under Community Support Framework III – the project SEDUCE 2.0 nr. POCI-01-0145-FEDER-031696.

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Cohen, J. M. (1988). Understanding Proteus syndrome, unmasking the elephant man, and stemming elephant fever. Neurofibromatosis, 1(5-6), 260–280. PMID:3152479 Coren, S., & Girgus, J. S. (1980). Principles of perceptual organization and spatial distortion: The gestalt illusions. Journal of Experimental Psychology. Human Perception and Performance, 6(3), 404–412. doi:10.1037/0096-1523.6.3.404 PMID:6447756 Damjanović, A., Vuković, O., Jovanović, A. A., & Jašović-Gašić, M. (2009). Psychiatry and movies. Psychiatria Danubina, 21(2), 230–235. PMID:19556954

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Datta, V. (2009). Madness and the movies: An undergraduate module for medical students. International Review of Psychiatry (Abingdon, England), 21(3), 261–266. doi:10.1080/09540260902748001 PMID:19459103 Dave, S., & Tandon, K. (2011). Cinemeducation in psychiatry. Advances in Psychiatric Treatment, 17(4), 301–308. doi:10.1192/apt.bp.107.004945 De Fiore, L., Costantini, A., Di, M. M., Gori, S., Lorusso, D., Rosti, G., & Pinto, C. (2014). Cancer on the big screen. How and when movies deal with oncological diseases. Recenti Progressi in Medicina, 105(5), 198–209. doi:10.1701/1493.16455 PMID:24873943 Devlin, A. (2014). Wayfinding in healthcare facilities: Contributions from environmental psychology. Behavioral Science, 4(4), 423–436. doi:10.3390/bs4040423 PMID:25431446 Essex-Lopresti, M. (1998). The medical film 1897-1997: Part I. The first half-century. The Journal of Audiovisual Media in Medicine, 21(1), 7–12. doi:10.3109/17453059609063115 PMID:9764516 Eysenbach, G. (2008). Credibility of health information and digital media: New perspectives and implications for youth. Digital media, youth, and credibility, 123-154. Fei, V. L. (2007). The visual semantics stratum: making meaning in sequential images. In T. D. Royce, & W. L. Bowcher (Eds.), New directions in the analysis of multimodal discourse (pp. 195–213). Mahwah, NJ: Lawrence Erlbaum. Fernandes, I. (2011). The Elephant Man (1980) by David Lynch: from ‘freak’ and clinical case to allegory. Cine Qua Non - Bilingual Arts Magazine, #9. Lisboa, Portugal: CEAUL. 2015. 54-75. Retrieved from http://hdl.handle.net/10451/29473 (Access date: August 13, 2019) Gabbard, G. (2001). Psychotherapy in Hollywood cinema. Australasian Psychiatry, 9(4), 365–369. doi:10.1046/j.1440-1665.2001.00365.x Gabbard, G., & Gabbard, K. (1999). Psychiatry and the Cinema (2nd ed.). Washington, DC: American Psychiatric Press. Gilman, S. L. (1988). Disease and representation: Images of illness from madness to AIDS. Ithaca, NY: Cornell University Press.

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González-Blasco, P., Delgado-Marroquín, M. T., Moreto, G., & Altisent, R. (2019). Vocación y profesionalismo: Reflexiones de los estudiantes catalizadas por el cine de Spielberg. Educación Médica, 20(4), 249–255. doi:10.1016/j.edumed.2018.10.001 Grushka, K. (2009). Meaning and identities: A visual performative pedagogy for socio-cultural learning. Curriculum Journal, 20(3), 237–251. doi:10.1080/09585170903195860 Gumpert, G., & Cathcart, R. (1985). Media grammars, generations, and media gaps. Critical Studies in Media Communication, 2(1), 23–35. doi:10.1080/15295038509360059 Harrison, C. (2003). Visual social semiotics: Understanding how still images make meaning. Technical Communication (Washington), 50(1), 46–60.

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Hashim, M. J., Alkaabi, M. S. K. M., & Bharwani, S. (2014). Interpretation of way-finding healthcare symbols by a multicultural population: Navigation signage design for global health. Applied Ergonomics, 45(3), 503–509. doi:10.1016/j.apergo.2013.07.002 PMID:23932379 Hortin, J. (1994). Theoretical Foundations of Visual Learning. In D. Moore, & F. M. Dwyer (Eds.), Visual Literacy: A Spectrum of Visual Learning. Englewood Cliffs, NJ: Educational Technology Publications. Hyler, S. E., & Moore, J. (1996). Teaching Psychiatry? Let Hollywood Help! Academic Psychiatry, 20(4), 212–219. doi:10.1007/BF03341883 PMID:24442743 Jung, H. C. (2012). Death education for medical personnel utilizing cinema. The Korean Journal of Gastroenterology, 60(3), 140–148. doi:10.4166/kjg.2012.60.3.140 PMID:23018534 Kalra, G. (2012). Talking about stigma towards mental health professionals with psychiatry trainees: A movie club approach. Asian Journal of Psychiatry, 5(3), 266–268. doi:10.1016/j.ajp.2012.06.005 PMID:22981056 Karenberg, A. (2008). Multiple sclerosis on-screen: From disaster to coping. Multiple Sclerosis Journal, 14(4), 530–540. doi:10.1177/1352458507084587 PMID:18208879 Kelly, B. D. (2006). Psychiatry in contemporary Irish cinema: A qualitative study. Irish Journal of Psychological Medicine, 23(2), 74–79. doi:10.1017/S0790966700009617 PMID:30290482 Kember, J. (2004). David Lynch and the Mug Shot: Facework. In E. Sheen, & A. Davison (Eds.), The Elephant Man and The Straight Story. The Cinema of David Lynch: American Dreams, Nightmare Visions (pp. 19–34). London, UK: Wallflower Press. Knox, S. L. (2006). Death, afterlife, and the eschatology of consciousness: Themes in contemporary cinema. Mortality, 11(3), 233–252. doi:10.1080/13576270600775007 Koch, T. (2011). Disease maps: epidemics on the ground. Chicago, IL: University of Chicago Press. doi:10.7208/chicago/9780226449401.001.0001 Koplan, J. P. (2003). Communication during public health emergencies. Journal of Health Communication, 8(sup1S1), 144–145. doi:10.1080/713851967 PMID:14692583

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Krementsov, N. (2015). Conjoined twins: Scientific cinema and Pavlovian physiology. Endeavour, 39(34), 168–178. doi:10.1016/j.endeavour.2015.10.001 PMID:26601729 Krieger, J. L., Parrott, R. L., & Nussbaum, J. F. (2010). Metaphor use and health literacy: A pilot study of strategies to explain randomization in cancer clinical trials. Journal of Health Communication, 16(1), 3–16. doi:10.1080/10810730.2010.529494 PMID:21128152 Kuiper, J. B. (1961). The Stage Antecedents of the Film Theory of SM Eisenstein. Educational Theatre Journal, 259-263. doi:10.2307/3204346 Legendre, C. M., Charpentier-Côté, C., Drouin, R., & Bouffard, C. (2011). Neurofibromatosis type 1 and the “elephant man’s” disease: the confusion persists: an ethnographic study. PLoS One, 6(2). doi:10.1371/ journal.pone.0016409 PMID:21347399

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Little, G. A., Kahn, R., & Green, R. M. (1999). Parental Dreams, Dilemmas, and Decision-Making in Cinéma Vérité. Journal of Perinatology, 19(3), 194–196. doi:10.1038j.jp.7200163 PMID:10685221 McDonagh, D., Goggin, N., & Squier, J. (2005). Signs, symbols, and subjectivity: An alternative view of the visual. Computers and Composition, 22(1), 79–86. doi:10.1016/j.compcom.2004.12.009 Membrives, M. D., Isern, M. T. I., & Matheu, M. C. L. (2016). Literature review: Use of commercial films as a teaching resource for health sciences students. Nurse Education Today, 36, 264–267. doi:10.1016/j. nedt.2015.10.002 PMID:26490325 Menon, K. V., & Ranjith, G. (2009). Malayalam cinema and mental health. International Review of Psychiatry (Abingdon, England), 21(3), 218–223. doi:10.1080/09540260902748043 PMID:19459097 Messaris, P. (1998). Visual aspects of media literacy. Journal of Communication, 48(1), 70–80. doi:10.1111/j.1460-2466.1998.tb02738.x Miguel, C. (2016). Visual intimacy on social media: From selfies to the co-construction of intimacies through shared pictures. Social Media+ Society, 2(2), doi:10.1177/2056305116641705 Müller, M. G. (2008). Visual Competence: A new paradigm for studying visuals in the social sciences? Visual Studies, 23(2), 101–112. doi:10.1080/14725860802276248 Niemiec, R. M. (2010). International Cinema: An Abundant Mental Health Resource of Films for Education, Communication, and Transformation. In The Cinematic Mirror for Psychology and Life Coaching (pp. 123–153). New York, NY: Springer. doi:10.1007/978-1-4419-1114-8_7 Pati, D., Harvey, T. E. Jr, Willis, D. A., & Pati, S. (2015). Identifying elements of the health care environment that contribute to wayfinding. HERD: Health Environments Research & Design Journal, 8(3), 44–67. doi:10.1177/1937586714568864 PMID:25929471 Pirkis, J., Blood, R. W., Francis, C., & McCallum, K. (2006). On-screen portrayals of mental illness: Extent, nature, and impacts. Journal of Health Communication, 11(5), 523–541. doi:10.1080/10810730600755889 PMID:16846952 Prince, S., & Hensley, W. E. (1992). The Kuleshov effect: Recreating the classic experiment. Cinema Journal, 31(2), 59–75. doi:10.2307/1225144

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Reese, V. (1995). Dermatology in the cinema. Journal of the American Academy of Dermatology, 33(6), 1030–1035. doi:10.1016/0190-9622(95)90297-X PMID:7490348 Schulenberg, S. E. (2003). Psychotherapy and movies: On using films in clinical practice. Journal of Contemporary Psychotherapy, 33(1), 35–48. doi:10.1023/A:1021403726961 Scott, N. (2014). The Monstrous Metallic in Medicine and Horror Cinema. Medicina Nei Secoli, 26(1), 312–332. PMID:25702391 Sesonske, A. (1980). Time and tense in Cinema. The Journal of Aesthetics and Art Criticism, 38(4), 419–426. doi:10.2307/430323 Sweeny, R. W. (2004). Lines of sight in the “network society”: Simulation, art education, and a digital visual culture. Studies in Art Education, 46(1), 74–87. doi:10.1080/00393541.2004.11650070

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Tobia, A., Mintz, J., Rudge, D., Bisen, V., Trenton, A., Draschil, T., & Dobkin, R. (2016). Deconstructing the film sinister through the lens of psychiatry. African Journal of Psychiatry (South Africa), 19(2). doi:10.4172/2378-5756.1000354 Van Dijck, J. (2002). Medical documentary: Conjoined twins as a mediated spectacle. Media Culture & Society, 24(4), 537–556. doi:10.1177/016344370202400405 Vertov, D. (1984). Kino-Eye: The Writings of Dziga Vertov. London, UK: University of California. Virzi, A., Dipasquale, S., Signorelli, M., Aguglia, E., Bianchini, O., & Palermo, F. (2011). Movie portrayals of physicians and the doctor-patient relationship. Journal of Cognitive and Behavioral Psychotherapies, 6(2), 475–485. Wakefield, M. A., Loken, B., & Hornik, R. C. (2010). Use of mass media campaigns to change health behaviour. Lancet, 376(9748), 1261–1271. doi:10.1016/S0140-6736(10)60809-4 PMID:20933263 Wilson, N., Heath, D., Heath, T., Gallagher, P., & Huthwaite, M. (2014). Madness at the movies: Prioritised movies for self-directed learning by medical students. Australasian Psychiatry, 22(5), 450–453. doi:10.1177/1039856214545550 PMID:25135436

KEY TERMS AND DEFINITIONS Accelerated Montage: Process of shortening the video length or duration and increase the speed, in order to transmit the idea of excitement and rhythm. Close-Ups: Camera shot that frames a person or object very tightly. Deep Focus: Creating the illusion of depth through the use of a short-focal length lens. Kuleshov Effect: The viewer’s perception towards a certain sequence of shots is changed, in comparison with a single shot. Montage: Editing technique in which different shots are organized in a sequence to shorten space, time and/or other information.

ENDNOTES 1 2

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3 4

5 6





The Elephant Man, https://www.imdb.com/title/tt0080678/ (Access date: August 13, 2019) There has been a confusion between Neurofibromatosis type I and Proteus Syndrome as “The Elephant Man” (Biesecker, 2011; Cohen, 1988; Legendre, Charpentier-Côté, & Bouffard, 2011) Lorenzo Oil, https://www.imdb.com/title/tt0104756/ (Access date: August 13, 2019) Adrenoleukodystrophy (ALD) is X-linked recessive genetic disease occurring only in males whose mother is a defective gene carrier. It is often characterized by adrenal insufficiency, abnormalities in blood pressure, attention deficit and progressive loss of vision, cognitive, motor and intellectual capacities. Life According to Sam, https://www.imdb.com/title/tt2558550/ (Access date: August 13, 2019) Progeria Syndrome is characterized by a premature ageing and results from a tiny change in the DNA that causes an abnormal protein – progerine to be created.

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9 7 8



10 11



12 13

16 14 15

Cuerdas, https://www.imdb.com/title/tt3381028/ (Access date: August 13, 2019) Imagine, https://www.rarediseasefilmfestival.com/work#/imagine/ (Access date: August 13, 2019) Niemann-Pick Type C (NPC) is characterized by the body’s inability to transport cholesterol and fatty substances, resulting in the its accumulation in body and brain tissues. In Crystal Skin, https://www.imdb.com/title/tt4947274/ (Access date: August 13, 2019) Epidermolysis bullosa (EB) is characterized by mechanical trauma and blister formation. This also may embody scars, musculoskeletal deformities and affect respiratory, gastrointestinal and genitourinary tracts. Brain on Fire, https://www.imdb.com/title/tt3704700/ (Access date: August 13, 2019) Anti-NMDA receptor encephalitis is characterized by the lack of NMDA receptors that control the brain’s electrical impulses, having an impact on reality perception, patients’ memory, sleep, speech, vision, hearing, movement and leading to seizures. Ian, https://www.rarediseasefilmfestival.com/new-gallery-2 (Access date: August 13, 2019) Midnight Sun, https://www.imdb.com/title/tt4799066/ (Access date: August 13, 2019) Xeroderma pigmentosum (XP) is characterized by the sensitivity to DNA to ultraviolet radiation, leading to its damage and affect the skin, eyelids, eyes’ surface, tip of the tongue and may possibly lead to neurodegeneration and hearing loss.

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This research was previously published in Communicating Rare Diseases and Disorders in the Digital Age; pages 292-314, copyright year 2020 by Medical Information Science Reference (an imprint of IGI Global).

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Chapter 8

The Philip Seymour Hoffman Project:

A Student-Generated, Media Literacy Focus on Opioid Abuse Rachel S. Kovacs City University of New York, USA

ABSTRACT The purpose of this chapter, and the class project upon which it is based, has been to demonstrate the prosocial role social media, and in particular Facebook, can play in media literacy, by providing a framework for showcasing rigorous student research and harnessing creative responses to salient social welfare and policy issues. Specifically, Facebook can potentially raise awareness of opioid abuse, which has spiraled into a global epidemic, provide narratives that reach broader audiences, and thus fill a gap in substantive mainstream media coverage on the topic. The chapter traces the evolution and progress of a student project in a media literacy class at a New York public university and puts efforts to address the current opioid crisis in an historical context. The immediate catalyst for the project was the sudden, tragic, heroin-related death in 2014 of actor Philip Seymour Hoffman, but the “bigger picture” has been broader communities. This study may interest media educators, their educational institution, government agencies, and health institutions that deal with health policy.

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INTRODUCTION This chapter recounts the history, progress, and impact of a student project in a media literacy class at a public university in New York City. The purpose of the project has been to raise awareness of opioid abuse and its impact, and to share student research and narratives on this topic with broader audiences by means of social media, specifically Facebook. The paper also puts the current opioid crisis and how it became an impetus for the project in an historical context. The immediate catalyst for the project was the sudden and tragic death of Oscar-winning actor Philip Seymour Hoffman, who died of a heroin DOI: 10.4018/978-1-6684-2414-8.ch008

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 The Philip Seymour Hoffman Project

overdose in his Manhattan apartment in February 2014 (Weber, 2014). Here the author will begin with the broader context of drug abuse and the failure to successfully curb, if not eliminate it, and then discuss Mr. Hoffman and the class project.

Problem: The Dismal Failure of the War on Drugs For decades, an anti-drug war that is nearly impossible to win has played out on a national and global stage. Addictions to and overdoses from drugs are at an all-time high in the U.S. According to one CDC report (CDC, 2018):

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During July 2016 to September 2017, emergency department (ED) visits for those aged ≥ 11 years for opioid overdoses in the United States increased 29.7% overall and 34.5% in 16 states with high prevalence of overdoes mortality. Significant rate increases were found in five Midwest region states (largest in Wisconsin [109%]) and in three Northeast states (largest in Delaware [105%]) (CDC, 2018, Paragraph 1). In addition, the overdose death rate was revised in January 2019, according to the National Institute on Drug Abuse (NIDA, 2019). “More than 70,000 Americans died from drug overdoses in 2017, including illicit drugs and prescription opioids—a 2-fold increase in a decade.” Efforts to stop drug use and distribution, including the War on Drugs of the 1990s, failed or triggered other problems. Drug manufacturers have been faulted for misleading publics regarding the addictive nature of prescription pills (Buckler, 2019) and the market for obtaining prescription pills illegally has exponentially grown due to laws like IStop (New York State, 2013) and other legal deterrents to doctor shopping and fraud. New, deadlier drugs now readily available on the market—e.g., fentanyl-- have raised the stakes for saving lives. Law enforcement and medical and public health professionals have collaborated with affected communities to curb the problem and in some cases have settled for harm reduction, rather than for eliminating addictions. This expanded emphasis on harm-reduction programs and injection sites has been negatively received in some cities and embraced in others (Gaviria, 2016). Public relations/information campaigns have had mixed success at best, and at times, no success at all. Community-based coalitions have attempted to increase the government’s commitment to getting dealers off the street and addicts into treatment. There has been clear conflict among politicians and community leaders about these issues. The drug crisis has pumped up candidates’ rhetoric, particularly around primary time (as seen during the 2016 campaigns) in states such as New Hampshire, which has a high rate of opiate use, overdoses, and incarceration of parents with minor kids. Grandparents in many states, such as Ohio, have become primary caretakers of their grandchildren because their own children have been incarcerated for drug abuse. In a Centers for Disease Control (CDC) press release, Dr. Thomas Friedan (2011), its director, said, “States, health insurers, health care providers and individuals have critical roles to play in the national effort to stop this epidemic of overdoses while we protect patients who need prescriptions to control pain” (Paragraph 2). The opioid crisis is now currently considered by many to be a pandemic, rather than just an epidemic. As a professor teaching a media literacy course, it was important to the author to provide students not only with staggering statistics bearing out the pandemic, but also convey the first-hand experiences of individuals and organizations dealing with it. In addition, the author hoped for at least one crucial, aspirational (see below) media literacy takeaway for the students: the way that media coverage for celebrity deaths contrasts with the media’s coverage of the “average” individual who overdoses but lacks public 128

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adulation. The emphasis on celebrity scandals and lives (one could include among these also stories about addictions, overdoses, and treatments) had, in the view of some credible sources, substantially skewed press coverage of more important issues for the public. According to the Pew Center (2007), “An overwhelming majority of the public (87%) says that celebrity scandals receive too much news coverage” (Paragraph 1). This skewing of coverage may have also affected the public’s perception of law enforcement. In a rare media report, Carter and Sanchez (2014) shone a spotlight on some of the controversy over whether all opioid probes are equal. They referred to Joseph Giacalone, a former NYPD detective and investigator, who believed that the police’s response to Hoffman’s case was clearly influenced by all the media attention focused on it as a celebrity overdose. Carter and Sanchez (2014) cited the grieving mother of an overdose victim, who questioned why the investigation of Philip Seymour Hoffman’s death proceeded so quickly and with results. “…(The police) get on it because it makes the news. But you have a 19-year-old who overdosed, and there could be an example made out there: We’re going to go after these people. But no, because he’s not a celebrity, that’s the end of it…Don’t get me wrong, I feel bad for anybody who dies of an overdose” (Paragraph 31). She added, “But the families of ordinary kids struggle just as much,” she said (Paragraph 34). Although the problem of discrepant media coverage of opioid abuse would be discussed the entire semester, the author will briefly explain the relationship between exploring media coverage of the opioid crisis and the pedagogical goal of increasing media literacy.

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Media Literacy as a Dilemma for Educators in Public Universities Media literacy is not something that can be learned in a textbook or cultivated through watching films or broadcast or social or online media alone. It is not synonymous with technological literacy/proficiency, which, unfortunately, many users, often younger ones, mistake for literacy. To be media literate, one must engage critically with multiple media channels, assess the credibility of various accounts, and determine if the media coverage is truly representative of an issue or an event. When a crucial issue for civil society is at stake (e.g., the welfare of citizens during an opioid epidemic, the media must provide comprehensive coverage. This certainly was not the case with much of the coverage that was released after Philip Seymour Hoffman passed. Therefore, the author sought to broaden both the scope of the information about Hoffman and his passing and the coverage of the opioid crisis, writ large, across media and publics, from demographic, geographic, economic, and sociopolitical perspectives. This was, for the author’s classes, the core of media literacy about opioid abuse. It has taken considerable effort to stay current with this topic, as opioid-related statistics have skyrocketed within months, the chemistry of opioid compounds (e.g., the substances with which opioids have been laced, for instance fentanyl) has been modified, and their use and methods of distribution have greatly changed. Thus, it has seemed that tackling opioid abuse has become like pursuing a moving target. Media coverage of opioids, and in particular overdose deaths, has been inconsistent in the way that it distinguishes celebrities from “ordinary” citizens. It can be superficial and confusing. Even those students who may have experimented with drugs may be unaware of how lethal and pervasive they are. They may assume that overdoses occur only among celebrities and in very poor neighborhoods. Those studying in urban multicultural educational settings may not fully grasp the pervasive

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 The Philip Seymour Hoffman Project

nature of opioid abuse and its impact, across race, class, income, and neighborhood. Therefore, media literacy is critical to an informed student body. The class composition in a large public university is highly diverse, with many who are first-generation English speakers and first-generation college students. The students primarily come from low to middleincome families. They include whites and African-American, Latino, and Asian minorities. Across race, ethnicity, national origin, and income divides, the vast majority of students obtain their information from the Internet and social media. They do not seek to validate the credibility of the information that is available to them via these sources. This is particularly true of their social media use, as what goes out on social media is not vetted. Few, if any, students read a newspaper, especially a hard copy, and even though some of their elders read the paper, the latter more often turn to television, and occasionally radio, for their news. It has always been a challenge to engage students in critical thinking, and now, with the information glut with which they are daily bombarded, students are reluctant to choose any but the most expedient news sources. In the media literacy classes that are the subject of this study, the author has provided the students with multi-perspectival sources, which they have supplemented with their own research. Media literacy, the nuts and bolts of the curriculum, has been filtered through the lens of opioid abuse, alternatively termed a crisis, epidemic, and now pandemic. The author’s decision to harness social media, and Facebook in particular, to increase literacy will be discussed further.

Background and Literature Review Did Opioid and Other Addictive Drug Use Really Start Post-WWII? The answer is clearly no. Quinones (2015) provided a timeline for “opiate” use going back to the distilling of morphine from opium in 1804. Although she had distinguished opiates as direct derivatives of the opium poppy, from derivative drugs that are synthesized, and often called “opioids,” she had labeled them all opiates to avoid confusion. Here the author will refer to the drugs as opioids, which is the current way in which the epidemic is primarily framed.

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Drugs in War and Post-War The virtues of a drug-enhanced lifestyle in the face of warfare were extolled and armies of young men and officers in the Third Reich took drugs for enhanced performance in severe weather and while under relentless enemy fire. Ohler’s (2015) research revealed that Hitler was high on opiates and methamphetamines and that amphetamine use was rampant in every branch and rank in the German armed forces, from the commanders to those drafted to serve. It is also true that there was a profound post-WWII amphetamine and later, heroin addiction in Japan (UNODC, 2019). In addition, the boon in prescription tranquilizer and antidepressant use by American women began when women were summarily dismissed from their war-effort jobs to make room for men returning from their military service (Chambers, et. al, 1971). It is noteworthy that close to 50 years ago, Johnson (1970) wrote of a heroin crisis in New York City schools, and said, “Once primarily the scourge of the …. slums, heroin has now also become a serious problem for the white middle class.” Some more jaded observers have commented that the opioid crisis of today was not considered a crisis until it mainly affected middle-class and upper-middle class whites.

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The War on Drugs of the 1990s primarily focused on mass media campaigns that were public relationscoordinated and featured targeted ads. The campaigns were not centered on relationship-building or community-based initiatives to influence target publics. They did not employ media advocacy. Wallack (1994), a proponent of media advocacy for over 20 years, has suggested the need to study health-related media campaigns and the extent to which actually they change health behaviors. Wolfe and Malinowska (2015) have pointed to the War on Drug’s failure and negative impact on society in the U.S. Other sources cited here have documented the extent of the drug problem, particularly among the young (Time, 1969; Johnson, 1970). Scholars have explored community activism and public policy (Apsler, 1998), as well as harm reduction (Gaviria, 2016). Politicians on the campaign trail have gone on the bandwagon about addiction. Candidates, such as Chris Christie and Hilary Clinton, referred to the crisis during the primaries for the 2016 presidential election. New York incumbents DeBlasio and Cuomo faced off against each other about drug abuse and legalization of marijuana. Many more studies are available on impact of information campaigns as per other health issues (e.g., tobacco [Bach, 2018] and alcohol [Jernigan, 2011]) than on the effects of such campaigns on opioid abuse. There are now exponentially-increasing public service announcements (PSAs) and ads on public transport but during the War on Drugs, one billion dollars was spent on television advertising, incentives and credits to stations, and the government launched the “National Youth Anti-Drug Media Campaign,” which is still operational (Office of National Drug Control Policy, 2010). In the spring of 1998, the U.S. government began to scrutinize scripts for anti-drug content (Lacey & Carter, 2000). Although the constitutionality of this was questioned, until the practice was halted, the government had scrutinized over 100 TV scripts for anti-drug content. Drug czar Barry McCaffrey did not respond to the criticism that treatment has proven a waste of time (Apsler, 1998). Certainly, recidivism rates have been very high for addicts in general, and Nasta (2017) maintained that only 15% of addicts on opioids are able to fully recover. It is clear that even one loss is a tragedy, but in this pandemic, the fact that 85% of addicts are unable to sustain a recovery is exponentially tragic. It was unclear, then, why the United States had been spending so much money on treatment that doesn’t work? Public health professionals had been critical of the anti-drug campaign, in general, for ignoring tobacco and alcohol, the top drugs of choice for young people in the United States. In addition, the campaign design was said to be flawed because it failed to provide funds to support local community programs for prevention and treatment. Television stations were reaping a windfall in advertising for something that should have been set as part of their public service obligation. Traditional media approaches by and large had failed to produce change in behaviors that supported or enabled drug addiction. Whether newer TV ads or ads on public transportation in New York and New Jersey would make any difference was questionable. The same question seemed to apply to social media and digital resources (e.g., Facebook, Instagram, Tumblr, Snapchat). These apps have been known to quickly spread messages and images and alert publics, but their longer-term impact remains to be seen. The premise that social media will get out the message has not guaranteed that the message will be internalized or acted upon. The above review of the literature has attempted to demonstrate not only the severity of the opioid crisis but the historical frustration with spending exorbitant sums on mass media anti-drug media campaigns, including public service announcements (PSAs). This literature review has also been supplemented by the author’s interviews with researchers and medical professionals and pharmacists in the United Kingdom (Kovacs, 2017), where attempts to eliminate drug use and mass media messages have 131

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 The Philip Seymour Hoffman Project

been found to be generally ineffective and sometimes counterproductive. The emphasis in the UK has been on harm reduction, and in the US, there is growing acceptance of it as a more realistic alternative to “curing” addicts. The problem with harm reduction has been that many communities are at best conflicted, and at worst hostile, about the prospect of cultural and social “invasion” by addicts (the Not in My Backyard or NIMBY effect) and a change in attitude and behavior by police, who are trained to be more like social workers and health professionals than law enforcement officers. Many citizens have found it disturbing that addicts can inject drugs openly, with the tacit consent of the police, and in addition, have expressed concern that allowing public drug use would likely have a deleterious effect on morale, on at-risk youth, and on the reputation of their cities (Gaviria, 2016). In such a heavily-contested environment of exponentially-rising drug abuse, this author set out to construct a media literacy curriculum that would represent varying approaches to the opioid crisis and actively engage students in research and in raising awareness through a collaborative project. It should be noted that students conducted their own research after they were given instruction in the context of a class information session at the college library, which included group/and individual instruction. First, they became acquainted with Mr. Hoffman.

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Setting the Stage for a Different Sort of Media Literacy Curriculum This author created an atypical media literacy curriculum after Philip Seymour Hoffman died in the bathtub of his Greenwich Village apartment in February 2014. He overdosed from “mixed drug intoxication,” largely heroin, in a particularly lethal compound sold to him by a dealer “friend” in Manhattan. The author was very familiar with the body of Hoffman’s work as an actor, but many students were unaware that Hoffman was a top character actor whose portrayal of Truman Capote (Capote, 2005) won him an Oscar. As the class consisted largely of first and second-year undergrads, they were less than familiar with this film than with his work in The Hunger Games (2015), which was posthumously released. As can be seen in the case of Hoffman, and from what students’ research would reveal, media coverage of celebrity deaths varied considerably from that of the man or woman or teen on the street who has overdosed. Hoffman had a history of alcohol and drug abuse but had been “clean” for many years. He left behind a partner of many years and three young children. The media praised him as an actor but there was limited focus on his long-term addiction and its impact on his family, his own career blips, and his personal health issues and struggles. There was coverage of the police’s hunt for the dealer and his subsequent arrest, but the story of Hoffman’s death quickly died down, other than for news of the opening of the Hunger Games (2015). Nevertheless, there was one short, noteworthy program that followed on the heels of Hoffman’s death and serendipitously caught the author’s attention, due to its lack of pretense and focus on youth.

WNYC Radio Rookies: An Eye Opener Within a few days of Hoffman’s death, New York Public Radio (2014) aired a student-generated-andrecorded program that underscored Staten Island’s escalating crisis at the high-school level and beyond. For the author, this was the first inkling of the island’s pervasive problem, and thus, the issue was raised in class. 132

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 The Philip Seymour Hoffman Project

Unfortunately, responses from the author’s students were not forthcoming and the author wondered if anyone else saw the elephant in the room. There was overwhelming sense of denial—Heroin was others’ drug of choice and had nothing to do with anyone in the classroom. If the author could have judged by the show of hands, nobody had taken drugs, nobody knew anyone who had taken drugs, nobody knew anyone who died from drugs, and nobody wanted to talk about anyone taking or dying from drugs.

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A Harsh Reality Check: Basketball Diaries This early Leonardo DiCaprio film (Island Pictures, 1995) was aired in class shortly after Hoffman’s death. In subsequent semesters, the film was also screened. It was uncomfortable, even painful, to watch Jim Carroll’s decline into addiction. Despite his respite from drugs, during which time he performed and shared his “diaries,” his ultimate death from a relapse, after the film was produced, was equally painful to consider and resonated with many. If a student, for whatever reason, found the film too difficult to watch, he or she was given an alternative assignment. The reaction paper to the film, which was required of the students, allowed them both freedom of expression but safety in anonymity, as their responses were known only to the author. There was no obligation to disclose in class. Once the author had decided to expand the discussion of opioid abuse into a class project, it became clear that research would need to be shared. In the process of collaboration and group context, there would likely be some level of self-disclosure, strictly voluntarily, in the classroom and outside of it. Independent of student research, there would be a series of guest speakers who would provide expert knowledge and anecdotal background information regarding the impact of opioid use on families and communities. The culmination of the research would be a group-generated Facebook page. The author consciously chose Facebook as the channel of communication to heighten awareness of opioids and potential recourse for dealing with addiction. Facebook was envisioned as a vehicle through which graphic images, recent research studies, peer comments, and fictional or documentary narratives could be made available not only to the entire class but also to interested visitors to the Facebook sites. The class was divided into six groups, each with a different focus. Each would conduct research and produce a different Facebook page. The groups were: Media Coverage of Celebrity Overdoses, Media Coverage of Prescription Pills in Staten Island as a Gateway to Heroin Abuse, Media Coverage of Heroin Abuse in Staten Island, Media Coverage of Health Communication, Media Coverage of Law Enforcement’s (and the Judicial System’s) Response to Opioid Abuse, and Media Coverage of Global Drug Abuse and Trafficking as Linked to Other Criminal Activities. Each group’s members chose a specific subtopic as his or her area of research specialization. He or she would contribute research material to the presentation and post it on the group Facebook page. The author suggested some subtopics, but students were not bound to these if they found other relevant topics more to their liking. Some suggested subtopics were: the economics of transition from prescription pills to heroin addiction, psychological, cognitive, or physiological effects of heroin or prescription pill abuse, the economic impact of heroin use (e.g., treatment costs, lost wages and economic potential), how drug use by musicians at concerts has encouraged wider use of heroin (e.g., by teens), the dangers of mixing and taking others’ pills, and how celebrity coverage differs from that of the “average” person. In the classroom, students studied the development of mass media that have served and could potentially raise awareness of opioid abuse: radio, sound recordings, television, films, advertising, and public relations. In addition, in class, and at home, students viewed and listened to programs about harm reduction, addicts’ behaviors and their impact on their health and their families, rehabilitation, and other 133

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 The Philip Seymour Hoffman Project

aspects of the opioid crisis. The guest speakers from Staten Island and Metro New York and New Jersey non-profit organizations provided statistical but also highly personal insights into the impact of addiction on not only the addict but his or her families and friends. The research commenced with a library instruction period, in which students were made aware of databases and other online and print resources. The instruction was provided in anticipation of an annotated bibliography, tailored to specific subtopics, which each individual in a group would create. For many students, this was their first introduction to scholarly materials, online reference texts, and other credible sites. Some students had posted their subtopics on Blackboard and had received feedback on them from the author; many were still undecided or had to narrow or refine them before the subtopics could be finalized. Once the topics were posted and feedback received, students submitted draft bibliographies. In a number of cases, jargon in the annotations obscured a simple, readable explanation of each source’s contribution, and so many drafts required revision. Once suitable materials were identified and the bibliographies were rendered readable, the author showed the class how an alphanumeric outline format can effectively guide a presentation and used students’ subtopics as models. The presentations were meant to walk the class through the groups’ research and creative endeavors to showcase the project and raise awareness of the opioid epidemic/pandemic. For this, given the media habits of much of the listening and viewing publics, Facebook seemed a perfect channel.

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Facebook and Its Potential for Raising Awareness of Health and Public Policy Issues The author felt that Facebook would provide the best vehicle for a cohesive class project and presentation. Facebook can be used for a multiplicity of purposes, but it generally projects a highly-personalized window into an individual’s life or insight into an organization’s operations and event-centered activities. It has also been used for charitable causes, but the rampant advertising and often questionable photos associated with the medium have added to perceptions that Facebook users are often narcissistic, frivolous, and sometimes downright irresponsible about what they post. They are, unfortunately, often blissfully unaware of the consequences of some of their posts. Nevertheless, Facebook as a social medium may be used to disseminate substantive information to large audiences and may be a potential agent of change. The author’s hope was that the use of Facebook would raise awareness of opioid abuse and provide a venue for some of the latest research, as well as a place to document the personal odysseys of students and those outside their frames of reference. Guidelines for the Facebook pages and all other aspects of the project were part of the class’ Blackboard shell and students understood the expectations. These included very clear and cautionary boundaries as to what could be said about others and the need for propriety in language and other online Facebook communications. In addition, from the author’s perspective, minimalist and aspirational goals for the project needed to be set.

Minimalist Goals of the Philip Seymour Hoffman Project The initial goals were to increase students’ digital research skills, including identification and use of credible sources, and their overall knowledge of the opioid crisis. In doing so, the author hoped to augment students’ comfort level with group work, with interviewing, and, in general, their willingness to 134

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 The Philip Seymour Hoffman Project

engage with the topic. The author also hoped that the students could relate what they had learned to events in their own environments and experience. There was also the goal of eliciting a productive environment, one that would lend itself to student collaboration on narratives, on the project as a whole, and would lead to the creation of a group-generated multimedia project and the production of a short film (later expanded to a podcast or alternative media format). The author hoped that the project would facilitate students’ outreach to others via Facebook and spur recognition of Facebook’s potential for increasing public discourse and catalyzing policy change. Finally, the authors minimally anticipated that the project would result in some level of impact on students’ own cognition and behaviors.

Aspirational Goals for the Philip Seymour Hoffman Project Ultimately, the author hoped that students would share their research findings in non-Facebook venues, understand the value of credible research, and continue to explore opioid-related issues across disciplines. In a “bigger picture” world, students involved in the project would increase their digital literacy and responsible use of digital media for pro-social purposes. Ideally, students would want to continue research and outreach on their own after the Philip Seymour Hoffman Project ended. The hope was that students would have some level of impact on others affected by the opiate crisis, either in a professional or personal capacity. Students would ideally seek to use Facebook for significant issues that affect them and others in their communities, stay drug-free, and encourage others to do so. Some students rose to a higher level of engagement and interaction, but it appeared that all students met the expectations for these goals on some level. In practical terms, though, the classroom experience itself became a barometer of the extent to which the topic touched a raw nerve in students’ consciousness and unleashed unanticipated disclosures. Some highlights are illustrated in the following section.

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Highlights of Classroom Interaction: The Big Bang Discussion Dalton (2016) focused on cabs being used to deliver drugs and to provide a discreet place for addicts to shoot up. This author circulated the article to the class to read and discuss in groups and was shocked at the unprecedented level of classroom interaction that took place—shouting, personalized stories, students engaged and energized from one end of the classroom to the other, across race, ethnicity, income, and geographic divides. The time allotted for the session was insufficient to get all views across, but strong emotions/views arose, from optimism to fatalism about the ability to curb the epidemic and the spike in overdose deaths. Since that time, students have had opportunities to hear from the guest speakers below about street realities (107 overdose deaths in Staten Island in 2016, down slightly in 2017, with an increase in fentanyl overdoses). On an active front, students heard and asked many questions during lectures by addicts in recovery, supervisors at outreach facilities specializing in harm reduction and recovery facilities, and family members attempting to help their addicted children recover. They watched and listened to various media accounts of opioids’ deadly and devastating consequences for users and their families. These talks, in part, gave students the motivation to channel their energies into Facebook and create narratives that morphed into multimedia productions. The prerequisites for creating their audiovisual, multimedia contribution to the Facebook page were an understanding of the importance of and a willingness to conduct face-to-face interviews, analyze those interviews, and conceptualize how their interviews 135

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 The Philip Seymour Hoffman Project

would potentially inform and shape their narrative. In class, students learned how to create an interview protocol, gained basic interviewing skills, and above all, understood that the most important skill needed for interviewing is to be a good listener. Students engaged to greater degrees than others with certain speakers and topics. In one recent lecture by an outreach professional from Community Health Action of Staten Island (CHASI), students’ questions ran a half-hour over class, into dinner time, and not one person left the room, which is truly extraordinary for college students after a long day.

Additional Evidence of Student Engagement With the Subject and With the Project On multiple occasions over the course of the semester, and sometimes, in the course of a week, students approached me privately after class or by email to explain how drug abuse had affected them and their loved ones. Occasionally, students had no compunction about discussing this in class. One student, with great aplomb, quite openly discussed how one parent had died of a heroin overdose and that a sibling was addicted. Another student approached me privately about an addicted brother’s incarceration in a maximum-security prison. Yet another student interviewed a woman who had three children addicted to heroin. These were not isolated incidents, and although all disclosures were strictly voluntary, some students maintained more composure than others when discussing their personal circumstances. If a student, regardless of his or her personal experience with an addicted relative or significant other, had a visceral reaction to or was otherwise uncomfortable with any content, he or she was given the option to leave the room and to complete an alternative assignment. Each student, though, was required to conduct an interview and then write an analysis of it.

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The Interview Process As stated above, all students were asked to interview an individual knowledgeable about the opioid crisis, preferably one who was connected in some way to his or her subtopic. They then analyzed the interview data and wrote a short narrative of the interview, not as a transcript, but as a holistic, semiethnographic experience. The goal of the interview was to gather valid, in-depth information that could not be gleaned from articles or other secondary sources. Students were to document the experience and its connection to the research topic or research question. They were forewarned not to place themselves in any situations that would be uncomfortable or potentially harmful to them, regardless of how much they could learn from the interview. The author made it clear there was no such thing as a “failed” interview, even if students were not able to attain the desired responses to their questions. Students’ analyses were to document any difficulties in setting up the interview, the venue for it, any interpersonal glitches, and any changes, in hindsight, that students would make to maximize the chance for improved interview outcomes in the future. Prior to conducting the interview, students constructed flexible interview protocols tailored to the types of data that they wished to obtain. The author reviewed the protocols and set up mock interviews in the classroom with one or more students. Sometimes the author was the interviewer, and sometimes the interviewee. These mock interviews were meant to demystify the interview process, to make it as com-

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 The Philip Seymour Hoffman Project

fortable and conversational as possible, and to give the interviewee the lead in telling his or her “stories,” uninterrupted. Students were told that the best way to be a good interviewer was to be a good listener. Many students indicated that the interview was the high point of their project experience. For some, the interview reinforced the human side of opioid abuse for them and facilitated an even greater level of empathy than students might have ordinarily acknowledged—for example, as noted above, the one student who interviewed a mother with three heroin-addicted children. Students rarely chose to post their interviews on Facebook pages due to confidentiality issues and ultimately, the postings were discontinued because of this. Not only were the interviews valid learning experiences in and of themselves, but they also served as building blocks for the treatments and narratives that were morphed into short, multimedia presentations. Students were also encouraged in this process by a faculty member at the college—a respected actor, director, and former colleague of Philip Seymour Hoffman.

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The Value of Narratives in Media Literacy, Health Communication, and Changing Behaviors Narratives have been shown to be effective in transmitting health communication (Frank, Murphy, Chatterjie, Moran, & Baezconde-Garbanati, 2015; Dahlstrom, 2014), changing health behaviors (Hinyard & Kreuter, 2007; Thompson & Kreuter, 2014), and eliciting emotional responses to mass media messages (Dunlop, Wakefield, & Kashima, 2008). Hinyard and Kreuter (2007) defined narrative communication significantly and explained its value to health-behavior applications because “it is the basic mode of human interaction” (p. 778) in our daily living. They distinguished between paradigmatic and narrative ways of knowing. Although the paradigmatic may be more scientific and empirical, narrative approaches have particular utility when dealing with value-based, highly personal and complex situations that are not necessarily governed by logic and reasons. Thompson and Kreuter (2014) took this a step further and proposed that in order to shape stories to convey health information, practitioners must adopt a “transdisciplinary approach that incorporates a mix of practical tools and techniques from creative writing and public health practice” (p.2). They focused on creative writing techniques. Dahlstrom (2014) proposed that the despite some of the negative connotations associated with “storytelling,” narratives have value in helping non-expert (read lay) audiences grasp materials that originate with expert sources. He posited that empirical evidence suggests that when paradigmatic and narrative processing are contrasted, narrative processing is “generally more efficient” (Paragraph 7). Although he discussed the role of the news media and cultivation in narrative persuasion, it seems reasonable that other channels and genres of mass media, such as feature and documentary films, film shorts, and radio and television narratives, among others, could be useful in conveying health issues of significance and potentially changing health behaviors. To this end, Frank, et al. (2015) explicated how the assessment of a narrative film about HPV helped women viewers perceive the HPV virus as a relevant concern that is potentially severe and the HPV vaccine as effective. These affirmations of narratives’ usefulness reinforced the author’s decision to incorporate narratives into the project.

Turning the Treatment and Script Into an Audio or Visual Short Film or Podcast For the first couple of years in which the project was implemented, the author did not require student groups to create narratives, but once the project was on solid ground, the richness of the research, student 137

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 The Philip Seymour Hoffman Project

experiences, and especially the interview data were clearly an incentive to harness the data for a short multimedia production. Students knew from the project guidelines that they would be responsible for creating a group Facebook page, but given that they had at their disposal data that could be creatively channeled, a percentage of the grade was pegged to a short narrative treatment (about three but no more than five pages per group), which they would build into a script. Initially, students shot short films on their cell phones, but in 2018, one group requested the opportunity to record a podcast, while another sought to create an animated film. The author trusted that students’ creative freedom would yield optimal results, as it did. As with other instructions for the project, the author posted on Blackboard a number of resources for structuring treatments and reviewed the drafts before students constructed their scripts. Given the difficulty for groups of coordinating schedules and finding safe and appropriate places to film their scripts, a few, but not all, groups requested time to film a three-to-five-minute film during a few minutes of class time. The author was amenable to this and these groups briefly filmed on campus. Once the multimedia creations were uploaded to the Facebook pages, it remained for all members of each group to post substantive comments on their own Facebook creations and those of classmates. It remained for the author to review the projects and to assess what, if any, impact the project and the multimedia constructs had on students and their audiences.

Assessing the Philip Seymour Hoffman Project’s Impact: Written and Verbal Anecdotal Evidence

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Assessment of the project’s impact on students and others has been at best anecdotal and only loosely structured. Until 2018, and the formalizing of some new components of the project, this author did not attempt student evaluations of the projects. As in 2018, evaluations had not been built into the syllabus. The author could not require it, but rather made it voluntary. The evaluations thus far have been insightful and some even came from students who did not appear to be so deeply engaged with the topic. Given the space constraints of this chapter, it is infeasible to list the diverse ways in which the project affected students. The author has resolved in subsequent semesters to include evaluations for assessment as part of the course curriculum. The project clearly had heightened students’ awareness of addiction and their resolve to raise awareness of the epidemic with others. Below is an example of an early email and of a verbal comment the author received (sender information has been redacted for confidentiality), prior to the subsequent administration of evaluations. Sent: Monday, December 14, 2015 1:35 PM To: Rachel Kovacs Subject: hello professor, this may be random, I wanted to tel you in class but I had to go to work. I think it’s wonderful that you are covering drug abuse and the topics associated in class, my brother is a heroin addict and my old friend died back in August from heroin overdose. It deserves more attention than it receives and I appreciate that you bring it to light within the classroom. thank you. Anecdotal Evidence (verbal-graduating senior, entering dental school)

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I just want you to know that even though the students complain about the work, what you are doing is very important.

DISCUSSION This study has provided an overview of over six semesters over six-plus years (one semester is in progress), during which the Philip Seymour Hoffman project was implemented in media literacy classes at a large public university. The intensive nature of the project, including students’ exposure to mass media and the firsthand experiences of those dealing with the opioid crisis, has provided both the author and students in these classes with varying degrees of insight into a highly complex public health problem with social, economic, and political ramifications. For those trying to eradicate opioid abuse, as indicated above, doing so is like shooting at a moving target. This is particularly true, as new drugs like Fentanyl are exponentially more toxic. On one level, what was learned by the author and students from readings, audiovisual materials, and presentations suggests that harm reduction can offset some of the worst consequences of opioid abuse. On the other hand, it is sustaining it. So in class, and outside of it, the author has reserved judgment on it. The author has also attempted to provide multimedia information and alternative approaches to the topic, supplemented by lectures and presentations by those in the “trenches,” so to speak, without judgment or an agenda. The interpretations of such information and approaches, and the “takeaway,” have been solely in the students’ purview, as has been any follow-up. It will be important for future classes for the author to examine the course content closely and update it for accuracy and/or for graphic material that may not be palatable to all students. In addition, it has become evident that much more systematic evaluation of the project and its components is warranted. Perhaps the class might be suitable for learning communities and cross-disciplinary participation. Given that the current public health crisis shows little indication of abatement, one would hope that heightened awareness of it, at the very least, would increase vigilance, and perhaps prevention of, opioid addiction among informed student publics.

REFERENCES

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Apsler, R. (1998). Drug abuse treatment has not been proven effective. In S. P. Thompson (Ed.), The War on Drugs: Opposing Viewpoints (pp. 74–79). San Diego, CA: Greenhaven Press. Bach, L. (2018, Mar. 7). Tobacco company marketing to African Americans. Campaign for Tobacco-Free Kids. Retrieved from https://www.tobaccofreekids.org/assets/factsheets/0208.pdf Buckler, C. (2019, Feb. 13). Does it matter where donations come from? A firm controlled by a donor family is alleged to have pushed the prescription of opioids. BBC Newshour. Retrieved from https:// www.bbc.co.uk/programmes/p070rkt9 Carter, C. J., & Sanchez, R. (2014). The Philip Seymour Hoffman case: Are heroin death probes created equal? Retrieved from https://www.cnn.com/2014/02/06/us/heroin-investigations/index.html

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CDC. (2011). Prescription painkiller overdoses at record level. CDC Online Newsroom. Retrieved from https://www.cdc.gov/media/releases/2011/p1101_flu_pain_killer_overdose.html Chambers, C.D., Schultz, J., & Starch, D. (1971, December). Housewives and the drug habit: What they take and why. Ladies Home Journal, 66-70, 138. Color Force/Studio Babelsberg. (2015). The Hunger Games: Mockingjay. Lionsgate Films. Dahlstrom, M. (2014, Sept. 16). Using narratives and storytelling to communicate science with nonexpert audiences. Proceedings of the National Academy of Sciences, 111(S4). Dalton, K. (2016, Nov. 25). Addicts using car service to ‘score’ -- are drivers oblivious? Retrieved from http://www.silive.com/news/index.ssf/2016/11/livery_cabs_ubers_used_to_scor.html Dunlop, W., Wakefield, M., & Kashima, Y. (2008). Can you feel it? Negative emotion, risk and narrative in health Communication. Media Psychology, 11(1), 52–75. doi:10.1080/15213260701853112 Frank, L. B., Murphy, S. T., Chatterjee, J. S., Moran, M. B., & Baezconde-Garbanati, L. (2014). Telling Stories, Saving Lives: Creating Narrative Health Messages. Health Communication, 30(2), 154–163. doi:10.1080/10410236.2014.974126 PMID:25470440 Friedan, T. (2011, November 1). Prescription painkiller overdoses at epidemic levels. CDC Online Newsroom. Retrieved from https://www.cdc.gov/media/releases/2011/p1101_flu_pain_killer_overdose.html Gaviria, M. (2016, February 23). Chasing Heroin. PBS Frontline. Retrieved from https://www.pbs.org/ wgbh/frontline/film/chasing-heroin/ Hinyard, L. J., & Kreuter, M. W. (2007). Using narrative communication as a tool for health behavior change: A conceptual, theoretical, and empirical overview. Health Education & Behavior, 34(5), 777–792. doi:10.1177/1090198106291963 PMID:17200094 Jernigan, D. (2011). Framing a public health debate over alcohol advertising: The Center on Alcohol Marketing and Youth 2002-2008. Journal of Public Health Policy, 32(2), 165–179. doi:10.1057/ jphp.2011.5 PMID:21346788 Johnson, T. A. (1970, Feb. 16). Heroin ‘epidemic’ hits high schools. The New York Times. Retrieved from https://www.nytimes.com/1970/02/16/archives/heroin-epidemic-hits-schools-heroin-epidemic-isenveloping-schools.html

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Kovacs, R. (2017). Interviews conducted regarding research about U.K. approaches to opioid abuse, harm reduction, and treatment. Cardiff, UK: Academic Press. Lacey, M., & Carter. (2000, Jan. 14). In Trade-Off With TV Networks, Drug Office Is Reviewing Scripts. The New York Times. Retrieved from https://www.nytimes.com/2000/01/14/us/in-trade-off-with-tvnetworks-drug-office-is-reviewing-scripts.html Moran, M. B., Murphy, S. T., Frank, L., & Baezconde-Garbanati, L. (2013). The ability of narrative communication to address health-related social issues. International Review of Social Research, 3(2), 131–149. doi:10.1515/irsr-2013-0014 PMID:24179677

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National Institute for Drug Abuse (NIH). (2019). Overdose death rates: Revised January 2019. Retrieved from https://www.drugabuse.gov/related-topics/trends-statistics/overdose-death-rates New York Public Radio (WNYC). (2014, Feb. 5). Why is Staten Island NYC’s OD capital? Radio Rookies. Retrieved from https://www.wnyc.org/story/staten-island-drug-hotspot/ New York State. (2013). I-STOP/PMP - Internet System for Tracking Over-Prescribing –Prescription Monitoring Program. Retrieved from https://www.health.ny.gov/professionals/narcotic/prescription_monitoring/ Office of National Drug Control Policy. (2010, July). Fact sheet: National Youth Anti-Drug Media Campaign. Retrieved from https://permanent.access.gpo.gov/gpo15298/national_youth_anti_drug_page_media_campaign_fact_sheet_7-16-10.pdf Ohler, N. (2017). Blitzed: Drugs in the Third Reich. New York: Houghton, Mifflin. Pew Research Center. (2007). Retrieved from http://www.people-press.org/2007/08/02/public-blamesmedia-for-too-much-celebrity-coverage/ Pictures, I. (2005). Basketball Diaries. New Line Cinema. Quinones, S. (2015). Dreamland: The true tale of America’s opiate epidemic. New York: Bloomsbury Press. Time. (1969, Sept. 26). Behavior: Pop drugs--The high as a way of life. Time, 94(13), 68-78. Retrieved from http://web.b.ebscohost.com.proxy.library.csi.cuny.edu/ehost/detail/detail?vid=1&sid=24ffaf2f2df2-4963-822e-18cf35a8427e%40pdc-v-sessmgr02&bdata=JnNpdGU9ZWhvc3QtbGl2ZQ%3d%3d #AN=54044452&db=a9h United Artists. (2005). Capote. Sony Pictures International. UNODC. (2019). A review of drug abuse and counter measures in Japan since World War II. United Nations Office on Drugs and Crime. Retrieved from https://www.unodc.org/unodc/en/data-and-analysis/ bulletin/bulletin_1968-01-01_3_page004.html Wallack, L. (1994). Media advocacy: A strategy for empowering people and communities. Journal of Public Health Policy, 15(4), 420–436. doi:10.2307/3343024 PMID:7883943

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Weber, B. (2014, Feb. 2). Philip Seymour Hoffman, actor of great depth, dies at 46. The New York Times. Retrieved from https://www.nytimes.com/2014/02/03/movies/philip-seymour-hoffman-actor-dies-at-46. html Wolfe, D., & Malinowska, K. (2015, Dec. 17). A chance to get drug policy right. Open Society Foundations. Retrieved from https://www.opensocietyfoundations.org/voices/chance-get-drug-policy-right

KEY TERMS AND DEFINITIONS Opiates: They are the natural form of drugs derived from the poppy plant and are highly addictive.

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Opioids: Synthetic derivatives of opiates, which are manufactured and used in prescription painkillers such as oxycodone or oxycontin and are highly addictive. War on Drugs: The U.S. government-subsidized programs to create ads and raise public awareness about the danger and use of drugs and their harmful effects on the addicts, their families, and their communities.

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This research was previously published in the Handbook of Research on Media Literacy Research and Applications Across Disciplines; pages 335-350, copyright year 2019 by Information Science Reference (an imprint of IGI Global).

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Chapter 9

Medical Tourism Patient Mortality:

Considerations From a 10-Year Review of Global News Media Representations Alicia Mason Pittsburg State University, USA Sakshi Bhati https://orcid.org/0000-0002-6305-7704 Pittsburg State University, USA Ran Jiang https://orcid.org/0000-0002-1542-3124 Soochow University, China Elizabeth A. Spencer University of Kentucky, USA

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ABSTRACT Medical tourism is a process in which a consumer travels from one’s place of residence and receives medical treatment, thus becoming a patient. Patients Beyond Borders (PBB) forecasts some 1.9 million Americans will travel outside the United States for medical care in 2019. This chapter explores media representations of patient mortality associated with medical tourism within the global news media occurring between 2009-2019. A qualitative content analysis of 50 patient mortality cases found that (1) a majority of media representations of medical tourism patient death are of middle-class, minority females between 25-55 years of age who seek cosmetic surgery internationally; (2) sudden death, grief, and bereavement counseling is noticeably absent from medical tourism providers (MTPs); and (3) risk information from authority figures within the media reports is often vague and abstract. A detailed list of health communication recommendations and considerations for future medical tourists and their social support systems are provided. DOI: 10.4018/978-1-6684-2414-8.ch009

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 Medical Tourism Patient Mortality

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INTRODUCTION As an industry medical tourism involves both the treatment of illness and the facilitation of wellness, with travel. Broadly, medical tourism involves a process through which a consumer travels from his/ her place of residency (usually to another country), receives medical treatment or care thus becoming a patient, and typically involves at least one overnight stay. Those who engage in the process of medical tourism are called ‘medical tourists’ and they do so for a variety of reasons. Many seek access to advanced medical technology, higher quality of care, and quicker access to novel or restricted medical treatments and procedures in their home countries. Medical tourists are motivated by several factors. Lower-cost procedures and discretionary cosmetic operations represent only a small segment of the global patient base. Data from the Medical Tourism Association’s (MTA) 2016-2017 Global Buyers Guide report is founded on 1,110 prequalified global buyers of healthcare services. Global buyers are defined as “individuals or companies that either refer patients to healthcare destinations or are involved in the selection of healthcare providers for the networks offered to traveling patients,” (p. 3). The report highlights that 72% of respondents seek orthopedic/spine and oncology/cancer care, 60% are those seeking cosmetic/plastic surgery, 54% are seeking cardiovascular treatment, 52% neurology, while 40% are seeking IVF/fertility treatments (MTA, 2017). Medical tourism patients enter the marketplace in a variety of ways with 54% using the assistance of a medical tourism facilitator (MTF), insurance company or government program, 16% are referred by local physicians, 12% receive interpersonal word of mouth (WOMC) information, 10% rely on internet research, and 8% use other means (MTA, 2017). Proponents of medical tourism argue the marketplace is an organic and emergent bi-product of the globalized healthcare systems, digital communication technology, and international transportation that provides opportunities for affordable access to high quality healthcare in premier facilities, and expedited access to novel or emerging treatments (e.g., stem cell treatments; Hopkins, Labonté, Runnels, & Packer, 2010). Critics maintain medical tourism is a poorly regulated healthcare industry (Turner, 2011), that increases patient risk due to weak pre-operative counseling (Crooks, Turner, Snyder, Johnston, & Kingsbury, 2011), and poorly coordinated post-operative treatment plans (Mason & Wright, 2011). Critics also argue that in some destinations the process creates preferential treatment centers, or dual delivery healthcare systems, that exacerbate current health disparities in local populations (Mason, 2014; Snyder, Johnston, Crooks, Morgan, & Adams, 2017). Affordability is a driver. For example, when quantifying the medical costs, cross-border and local transportation fees, inpatient stay, and post-operative accommodation expenses, Patients Beyond Borders (PBB) estimates the global media tourism market size is $65-87.5 billion USD, with approximately 20-24 million cross-border patients spending an average of $3,410 USD per visit. PBB also forecasts some 1.9 million Americans will travel outside the United States for medical care in 2019 (PBB, 2019).

HISTORY OF MEDICAL TOURISM IN WESTERN MEDIA Medical tourism, sometimes referred to as ‘healing holidays,’ ‘medical voyages,’ and ‘therapeutic journeys’ have appeared in U.S. print news publications as far back as the 1870’s. These publications often use travel narratives and promotional advertising placements to attract ‘health seekers.’ Health seekers in this era were often invalids, those with incipient consumption, and TB patients. As a result of westward 144

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 Medical Tourism Patient Mortality

U.S. expansion and improved railway transportation, newspaper advertising in the early 1890’s attracted health seekers with the allure of ‘palatial day coaches’ and ‘salubrious and health-giving environments,’ (St. John’s, 1907). During this era, medical tourism media promotion often appeared in the form of persuasive advertising appeals targeting the environmental-consciousness of patients. These health messages drew upon alluring aspects of elevation, temperature, and variability of year-round climate in key destination locations. Other persuasive health appeals drew upon the history and knowledge of indigenous U.S. populations to establish credibility. For example, Rhea Springs, Tennessee promoted the healing properties of the local land and water by asserting: “Even before the white man stepped his foot on American soil the healing properties of this famous water were appreciated by the medicine men of the Cherokee Indian Tribe,” (Presbyterian, 1911, p. 21). By 1914 the Denver Health Seekers Bureau (DHSB) was established to offer advice to current and newly arriving health seekers. Working in coordination with the Denver Visiting Nurses Association these patients were provided information on the importance of proper hygiene, and instructed not to solely rely on the benefits of the Colorado climate for recovery. Serving as precursor to today’s medical tourism facilitators (MTF), intermediaries or liaisons between patients and medical tourism providers (MTP), members of the DHSB would contact health seekers upon arrival and assist in finding sanitary quarters (Bell, 1914). These early media representations of medical tourism did not frequently report stories of patient mortality resulting from complications of travel, quality of accommodation, or substandard healthcare services and treatments. Contrary to these early forms of medical tourism promotion, today’s media frequently report high-profile deaths resulting from medical tourism. Merlock, Jackson, Payne, and Stolley (2013) argue that American media “often scrutinizes high-profile medical tourists, they frame narratives of desperation, hope, caution, technology, choice - even a bit of adventure - and these stories resonate with the public,” (p. 126). Popular celebrity examples include the death of Steve McQueen, who was at one point was the highest paid movie star in the world, died at the age of 50 in Mexico while seeking unorthodox cancer treatments unavailable in the United States. Others include Farrah Fawcett, an American actress, who died after receiving failed cancer treatments in Germany not available to U.S. patients at the time. Tameka Foster, ex-wife to international R&B singer Usher, died following cosmetic surgery complications in Brazil. Media representations of medical tourists have appeared in a wide variety of media outlets and across multiple channels and platforms over an extended period of time. The next section provides a review of recent scholarly inquiries into medical tourism and patient mortality.

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MEDICAL TOURISM AND HEALTH COMMUNICATION Global healthcare is in a transformative period. Networks of globalized healthcare systems are becoming more centralized and dense, and economic development is accelerating through the advancement of transportation and technology in special economic zones (SEZs) spurring the continued expansion of the global health marketplace. Over the past decade health communication scholars have employed a variety of qualitative and quantitative methodologies to better understand the impact this process has on patients. Some lines of academic inquiry have been patient-focused examining the communication needs of medical tourists (Ngamvichaikit & Beise-Zee, 2014), while others focus on the attitudes, motivations, and justifications expressed by medical tourists for engaging in the process 145

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 Medical Tourism Patient Mortality

(Cameron et al., 2014; Khan, Chelliah, Haron, & Ahmed, 2017). Still, other work has been messagefocused involving inquiries that examine specific forms of persuasion, including the elements of emotion and risk in medical tourism advertising appeals (Kemp, Williams, & Porter, 2015), and first-person patient testimonials (Hohm & Snyder, 2015). The promotional health messages associated with the medical tourism industry have been studied across media channels including websites (Lee et al., 2014) and newspapers (Jun & Oh, 2015). Additional research efforts to more fully understand the digital promotion techniques have employed a regionalfocus such as examining the Korean medical tourism industry (Jun, 2016) and Canadian medical tourism brokers (Penny et al., 2011); a treatment-focus analyzing specific medical treatments such as weight loss surgery (Glenn, McGannon, & Spence, 2013) and transplant tourism (McKay, 2016); and a sociocultural-focus including studies that explore differences between East–West medical tourism facilitators’ websites (Frederick & Gan, 2015), differences in medical tourism news representations between low- and middle-income countries (Imison & Schweinsberg, 2013), and also how specific treatments are presented to diverse audience bases (e.g., reproductive tourism representations between Israel and Germany;Bassan & Michaelsen, 2013). Extant literature has helped to inform our current understandings of many patient-centered concepts associated with the medical tourism including: risk, disclosure and informed consent, patient decisionmaking, organizational and physician credibility, in addition to calling attention to the ethical, financial, and legal considerations. This field of study has successfully provided many pragmatic considerations necessary for the continued growth and advancement of the global medical tourism industry. In an attempt to add to this growing body of scholarship, the present chapter explores media representations of patient mortality in the global news media occurring between 2009-2019, in order to better understand how the deaths of medical tourism patients are framed to global audiences. Turner (2013) previously analyzed news representations of international medical tourism patient deaths ranging from 1993-2011 who exclusively received either cosmetic and/or bariatric surgery. Findings from this work argued: (1) targeted public safety messages about risks of cosmetic surgery procedures to low and middle income women, (2) communicating the importance of regulation and licensing of healthcare professionals and ambulatory environments in medical tourism, (3) increasing coordination of public awareness through U.S. consulate offices and other services such as Yellow Book©, (4) improving advertising regulation, (5) critically reflecting about the “routinization and normalization” of popular, commercialized procedures such as liposuction, breast augmentation, and lap band surgery, and finally, (6) advocated the need for better tracking strategies for assessing patient flow, service, and treatment outcomes (Turner, 2013). Our work seeks to determine if prior results will be replicated in a data set that includes both domestic and international medical tourists, in a sample that is not treatment-specific, and aims to extend upon prior work in three key ways. First, our analysis offers an enhanced focus on medical tourism providers’ response characteristics presented in the media accounts of patient death. Second, this analysis explores how post-mortem patient advocacy by friends and family of victims are integrated into the reporting process. Finally, we provide new considerations for planning and preparation prior to seeking elective or urgent healthcare abroad. This chapter is segmented into two main sections. The Approach section details the sampling procedures used to create the data set, and details the database and digital search strategies used to identify cases of medical tourism patient mortality. A comprehensive list of cases included in this study are presented with the support materials. The Analysis & Interpretation section is presented as a qualitative content 146

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 Medical Tourism Patient Mortality

analysis and includes several health communication recommendations and considerations for patients and their families, applied health practitioners, and members of the academic community.

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APPROACH Historically some scholars have chosen to limit the definition of ‘medical tourism’ as the act of traveling from one country to another, specifically for the purpose of seeking medical treatment, procedures, or services. This analysis does not predicate the conceptual definition as contingent upon ‘international’ travel. Medical tourism exists as an option for domestic and international patients globally. Patients traveling from California, U.S. seeking treatment in Florida, U.S. would travel significantly farther than an individual leaving Florida, U.S. traveling to Cuba, or the Dominican Republic for healthcare purposes. In this chapter we define medical tourism as a consumer transaction through which one travels, either domestically or internationally, for the specific purposes of obtaining medical or healthcare treatment and services, thus becoming a patient. To create a sample for analysis, three researchers identified patient mortality cases using a variety of digital and database search strategies. The strategic focus was media representations of patient deaths and our research efforts concentrated on identifying cases presented in U.S., India, and Chinese media outlets. Cases were identified using several databases including: Newswire, Nexis Uni, and WebNews. Online search engines were also used to locate cases including: Google, Yahoo!, and Bing. Chinese media representations were identified using Baidu, the largest search engine in China, and CNKI.1 Cases were also identified through regional news networks including Chinese news websites (e.g., Sing Pao Daily News, Souhu News, and Sina News) and news websites in India (e.g., India Times). Publicly available hospital reports and prior cases in medical studies were considered. If a news report referenced a case not previously identified, additional research efforts were made in order to identify the patient and further search and code the case. When available, social media content about the case was analyzed and integrated into the analysis. A variety of non-treatment specific search terms were used including: medical tourism, medical tourist, patient death, medical tourists, patient’s death, fatal, death, medical, hospital, and abroad. Our analysis excludes travelers who received care on an emergency basis (i.e., ordinary tourists who become sick on a cruise), wellness tourists (i.e., those seeking non-medical massages or acupuncture), and expatriates seeking care in their country of residence. Cases were omitted if the medical tourist was specifically traveling for assisted suicide (e.g., suicide tourism, death tourism), if a patient was injured but not deceased, or if the case involved a foreign tourist who died in a foreign hospital, but did not travel initially for medical purposes. Data for each case were coded into four categories including: patient background: home country, sex, age, cause of death, identity descriptors (i.e., lawyer, mom, business owner, etc.); process characteristics: location of treatment/surgery, place of treatment surgery, place of convalescence/recovery (i.e., hospital, hotel, apartment), type of treatment received, physician qualifications, facility accreditation/licensing, use of medical tourism facilitators, reputational and performance history of physicians, facilitators and facilities; case outcomes such as patient advocacy, fundraising, the launch of formal, criminal or administrative investigations; a physician suspended, arrested, charged; a treatment facility temporarily or permanently shut down; and also the educational or instructional health information including statements telling audiences what to do to avoid negative outcomes (i.e. be aware, do more research, etc.)

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 Medical Tourism Patient Mortality

A total of 57 cases were identified for consideration, each case representing one, individual medical tourist. Upon secondary review, seven cases were disqualified as some were found to be children under the age of 18 which were not decision-making consumers at the time services were received, individuals receiving treatment in one’s hometown, and cases pre-dating the sample time frame 2009-2019. 2 The final dataset included 50 cases, of these 80% are females (n=40) and 20% are males (n=10) who died as a result of medical tourism during the January 2009 to March 2019 time period. Twenty percent of the cases (n=10) resulted from domestic medical tourism, 80% (n=40) were international medical tourists. For the purposes of this analysis and consistent with extant literature, the patients’ names will not be disclosed. The sample consists of a variety of medical treatments including: cosmetic procedures (i.e., tummy tucks, breast augmentation, liposuction, eye lid surgery), bariatric procedures (i.e., labband surgery, gastric bypass), as well as addiction treatments, dental treatments, liberation therapy, and organ transplants. A total of 72 treatments/procedures were noted for these 50 cases, with some patients obtaining 2-5 surgeries in a single visit. Only 10% of the cases (n=5) would be considered high-profile involving models, actors/actresses, beauty queens. The next section of the chapter details the qualitative analysis and interpretation of the cases involved in this study. Findings from this thematic analysis will be drawn upon and used to frame recommendations and strategies for consideration in future practice. These areas of recommendation include: informational and educational health messages, medical tourism patient and family recommendations, and the MTP organizational response considerations.

INTERPRETATION AND ANALYSIS

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Information and Educational Health Messages Upon review of the public advice and procedural recommendations included within the media reports included in our sample, it was evident these statements are often vague and abstract. The advisory statements following patient deaths are often delivered by highly credible sources such as attorneys, government officials, professional and law enforcement agencies, officers, and directors. The public statements tell lay audiences that hospitals should be ‘authentic and qualified’ (P8), medical tourists should ‘watch out’ what hospital is selected (P9), medical tourists should understand local regulations to ‘protect themselves’ (P3), and that medical tourists should have ‘a basic ability to identify false propaganda and minimize risk’ (P6). Audiences are further instructed to ‘do their homework’, and ‘go to a place that has the right facilities’, and ‘“properly trained” doctors’. While sound advice, these generalized claims fail to address important message design aspects of risk communication processes. The recommendations noted in our sample offer little detail, and lack ‘how to’ messages of efficacy that audiences would be able to behaviorally follow. Medical tourists, like other patients, have specific health information seeking behaviors and differing degrees of health literacy. In many of these cases, the referring source to the medical tourist’s treatment clinic or physician came through interpersonal relations, word of mouth (WOM) recommendations from friends and family. The interpersonal influence of trusted friends, who are known associates of prior medical tourists, may undermine additional health information seeking behaviors commonly advocated by authorities within these reports. Health information seeking (HIS) is the intentional, active effort to obtain specific information above and beyond the normal patterns of media exposure and use of interpersonal sources 148

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(Atkin, 1973; Griffin, Dunwoody, & Neuwirth, 1999). These HIS behaviors include non-routine media use or interpersonal conversation about a specific health topic and includes behaviors such as “viewing a special program about a health-related treatment, using a search engine to find information about a particular health topic, and/or posing specific health-related questions to a friend, family member, or medical practitioner outside the normal flow of conversation,” (Niederdeppe et al., 2007, p. 155). Several cases reported learning about medical tourism opportunities through online searching, receiving digital promotional advertising, and coordinating with a MTF. Although authority figures in the media reports advocated for medical tourists to discern between ‘good’ and ‘bad’ physicians, and ‘real’ and ‘fake’ propaganda, the methods or techniques for doing so were not provided. Health information seeking (HIS), specifically online, poses challenges for medical tourists to ‘do their homework.’ Medical tourists may not be able to access information about a hospital or physician’s performance record in their native language, or may find the information is presented in lingo, jargon, or highly technical language. Online HIS efforts may yield false claims about health services, products, and treatments without providing supportive evidence of the promotional health claims (Dow et al., 1996). Digital health claims may be strategically ambiguous, presented at an advanced reading level, and may overuse textual formats than can exacerbate language barriers (McGrath, 1997). Assessing credibility of the health claims is also challenging as the authorship may be misleading or outdated. The webpage may appear savvy and look “official”, leading consumers to believe the health claims (Pereira & Bruera, 1998). A family member of P47 stated, ‘I saw the website. It looks great. You would think this was the place, but it’s not. It’s a death palace.’ It is difficult to glean what information is omitted from online advertising content strategically framed to present physicians, treatments, and/or facilities in a positive light and distributed to medical tourists prior to travel. It is not enough for patients to research a treatment facility and use the organization’s accreditation as the sole indicator of high-quality healthcare expectations. In several cases, at the time of death the medical facility/clinic had the proper licensing and certification, it was the operating physician/ surgeon who did not. While many healthcare organizations can easily demonstrate strong organizational credibility through international accreditation (i.e., JCI, AAAAF); physician expertise and performance history are equally as paramount. Even if a medical tourist possessed all of the necessary, pertinent information prior to electing treatment abroad, it doesn’t mean they will comprehend the nuanced details. Understanding the pre-travel health literacy of medical tourism patients is critical, yet today relatively little is known about the general knowledge and health literacy of this patient population. Health literacy is the degree to which individuals can obtain, process, understand, and communicate about health-related information needed to make informed health decisions (Berkman, Davis, & McCormack, 2010; Berkman et al., 2011; McCormack et al., 2010; Ratzan & Parker, 2000). Patients with high health literacy may be more likely to understand the discrete differences between a cosmetic physician and plastic surgeon, and thereby proactively engage in health information seeking behaviors to confirm specific physician qualifications and skills training. For those with low health literacy this may result in negative outcomes. The Agency for Healthcare Research and Quality (AHRQ) found low health literacy is associated with more emergency department visits and hospital readmissions, less preventive care, and poor medication administration skills (AHRQ, 2017). Health literacy as a concept, is multifaceted and includes printed literature, oral communication, and numeracy. Printed literature requires reading and writing ability. This may affect a patient’s ability to understand the promotional, medical, travel, legal/contractual, and financial documents prior to travel. Oral literacy requires the ability to listen and speak. Patients in medical tourism scenarios may need to 149

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 Medical Tourism Patient Mortality

address intercultural communication challenges with providers and staff, and communicate post-operative messages to convalescent teams or caretakers in off-site locations (e.g., hotels, apartments). Numerical literacy, or numeracy, is the skill and ability to understand and use numbers which is essential with respect to knowing financial documentation, medical paperwork, and medication dosages. Statements from authority figures in these cases often lack specific language that directs the public to factual and reliable information resources and fails to deliver messages of efficacy explaining how to do so in a way that lay audiences are able to comply.

Medical Tourism Patient Recommendations From the experiences of patient deaths included in this sample, several lessons can be learned to reduce risk. Six categories for health awareness and education of medical tourists are described below including: (1) understand there are ‘bad’ actors, (2) arrange post-operative and convalescent care, (3) comprehend and understand signed documentation, (4) avoid bypassing planned procedures, (4) disclosure of honest and accurate information, and (6) focus on short- and long-term care planning.

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Understand There Are Bad Actors Several cases in this sample can be traced to a select group of physicians, some unlicensed, and poorly performing procedures on unwitting medical tourists. In 2009 Dr. Johan Tapia Bueno owner and operator of Clinica Brazil was arrested for malpractice. The clinic, operating out of an apartment building, was closed for lack of licensing and noncompliance with poor sanitary requirements. Bueno was not registered with the Dominican Society of Plastic Surgeons at the time (Actualidad, 2009). Dr. Hector Cabral owned and operated the International Center for Advanced Plastic Surgery and is connected to P21, P48, and P47 deaths. In 2011 Cabral was arrested and charged with 10 counts of unauthorized practice of medicine in the United States. Cabral later pleaded guilty to one charge, received no jail time, paid a fine, and completed 250 hours of community service in the Dominican Republic to continue practice. The Dominican authorities would later close the clinic following the deaths of three international patients (Vincent & Klein, 2013; Allred, 2015). A third doctor connected to P29 and P39, Dr. Victor Hector Ramirez Hernandez, was arrested, charged, temporarily suspended, and eventually found innocent in the death of P29. Following the trial, Ramirez quickly asserted credibility by noting membership in the Mexican Plastic Surgery Council and the International Association of Plastic Surgeons. His response did not address the closure of his medical facility due to (a) stockpiles of expired medications, (b) poorly maintained and obsolete equipment, (c) improper management of biological waste, and (d) having undivided recovery areas (Lopez, 2015). Other cases were connected to specific surgical centers, but because the names of the business were changed several times “patients were often unable to connect the deaths to the business,” (Sallah & Perez, 2019, n.p.). Jolie Plastic Surgery, in Miami, FL, U.S., was previously known as Eres Plastic Surgery, previously known as Encore, previously known as Vanity, and were all operated and directed by owner Dr. Ismael Labrador. Of the 39 physicians promoted on the website, 24 were determined to be not board-certified in plastic surgery, a specialty which is earned after six years of residency and advanced safety training.

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Arrange Post-Operative and Convalescent Care Twenty percent of these cases involved treatment and recovery outside of an ambulatory facility including locations of private apartments, hotel suites, and houses (n=10). In some cases patients received operations or treatments in hotels, houses, penthouse apartment spaces, and recovered in off-site locations such as other hotels, or apartments. These locations would not meet basic accreditation standards from the American Association for Accreditation of Ambulatory Surgery Facilities, Inc. (AAAASF) for either treatment or postoperative care and recovery. Staff at off-site convalescent locations, often marketed as ‘recovery suites’ may only be authorized to deliver first aid treatment, if needed. Medical tourists seeking high-risk procedures at high-volume facilities need to understand that distance adds delay to urgent post-operative medical needs.

Comprehend and Understand What You Sign Prior to surgery, medical tourists often sign documentation they do not read, with terms and conditions they do not understand. Some documentation has been found to contain legal clauses restricting negative comments from being shared online or through social media, under penalty of a defamation lawsuit from the MTP. In some cases, patients are asked to sign medical documents in a non-native language, reducing their ability to understand what they are or are not agreeing to. By not comprehending or understanding the medical forms, medical tourists may be restricted from publicly discussing negative experiences, forgo patient legal rights, or unintentionally agree to procedures they are not fully aware of at the time.

Avoid Bypassing Procedures Several patient death cases resulted from the bypassing of standardized procedures. In the case of P21, the patient’s inbound flight was delayed, causing a late-night arrival for an operation the following morning. Media reports indicated the prescreening and medical questionnaire screening protocols were bypassed. P21 later died due to a pulmonary embolism. On the day of surgery, P38 was directed to an offsite location to obtain a pre-operation ultrasound. The location was closed, no ultrasound was obtained, and the staff reportedly proceeded with multiple cosmetic surgeries. In the case of P24, an investigation concluded that the preoperative consultation did not meet an international standard. Medical tourists need to be educated on the importance of pre-screening protocols and educated on the expectations of pre-operative counseling.

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Disclose Honest and Accurate Information Medical tourists need to disclose honest and accurate information to both physicians and family throughout the medical tourism process. In several cases, the families had no prior knowledge of the patient’s choice to seek treatment abroad. P27 relatives only discovered the patient had a procedure when they arrived to identify the body at Rio’s Institute of Legal Medicine (IML). P23’s family stated, “We had no idea what [P23] was going to do. If we had known we would have done everything to stop her.” Medical tourists should be encouraged to disclose accurate information to physicians and MTF/MTPs. In some cases, patients were found to withhold relevant personal health histories, others were engaging in unauthorized illegal drug use prior to surgery, and still others allegedly used sleeping medication post-operatively, 151

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without physician or caregiver knowledge. Honest, accurate, and transparent communication is needed throughout the medical tourism process.

Focus on Short- and Long-Term Care Planning Post-operative care planning needs to be established before engaging in high-risk medical tourism procedures. Post-operative care planning should include identifying and meeting with healthcare specialists in one’s home country who agree to provide follow-up care and treatment should complications occur after returning home. P33 returned from Costa Rica following therapy and demonstrating vast improvements in health to friends and family. Within months, P33 developed a blood clot in a stent placed by an MTP. A local hospital reportedly refused treatment because the operation was performed internationally. With no other choice, P33 returned to Costa Rica. After a month- long process and receiving medicine to dissolve the clot, P33 died. Multiple patients died several weeks following the procedures for which they traveled. Throughout the convalescent period, medical tourists remain vulnerable, and not all medical tourists have the financial means for return travel or corrective procedures, should they be denied care in their home countries.

Medical Tourism Family and Social Support Recommendations Of the 50 cases included in this study, 40% involved posthumous engagement by friends and family (n=20). Twenty-six cases reported investigations into the operating physician, staff, and/or surgical facilities (e.g., clinic, hospital). Of these cases, 24 resulted in physician arrest, physician conviction, revocation of licensure, temporary or permanent closure of the clinic, facility, or hospital, and/or civil legal actions. The strong association between post-death patient advocacy by friends and family and civil and criminal processes was notable. In the unlikely event a death was to occur, we offer three recommendations for friends, family, and care providers of medical tourists.

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Obtain and Review Documentation of Procedures and Processes Patient advocates need to understand the importance of requesting, reviewing, and recording correspondence and documentation with MTP/MTFs. When a family member of P36 requested the medical chart, she noticed there was no EKG readout attached. She reportedly asked the doctor where it was, because it is customary to monitor the heart during surgeries. He replied that the EKG machine had run out of paper. When the family of P29 arrived in Mexico, they discovered the paperwork the patient was supposed to have read and signed before the surgery was incomplete. These types of discrepancies are not unusual. In one case the initial autopsy reports listed the cause of death as either natural causes or a heart attack; however, a second, independent autopsy from a coroner revealed significant puncture wounds to many of the patient’s organs.

Prepare to Experience Barriers One of the most challenging barriers immediately experienced following a medical tourism patient death is the return of the body. Several reports noted the struggle of families to gain access the bodies of dead medical tourists. Days after learning of P25’s death, the family were still waiting for explanations and 152

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also trying to arrange return transportation of the body. P39’s family reported that it took a week to get the body out of Mexico, with little assistance from locals, the Mexican consulate, or the American consulate; while families were also reportedly receiving contradictory and conflicting information to many questions. Additional financial resources may be needed to overcome these barriers. For example, because the cosmetic procedures for P49 weren’t approved by her U.S.-based healthcare provider, the company would not transport back the body from the Dominican Republic.

Fundraising and Patient Advocacy Western patient mortality cases most frequently involved grassroots, public fundraising and outreach efforts requesting assistance and financial support from others through social media (e.g., Go Fund Me). With the exception of one case from Australia, post-mortem fundraising was a feature exclusively presented in Western media reports. The advocacy actions of friends and family members appeared in many forms including: speaking in front of international congressional assemblies, protesting outside healthcare facilities, creating fundraising campaigns, giving media interviews, developing websites, creating awareness, and offering social support to others (e.g., Evitaa.com).

Medical Tourism Providers For MTPs the organizational response to a medical tourist patient’s death in local and international media is a defining moment, in terms of reputation management. Prior scholarship has found when patients feel they have been mistreated or their concerns are not addressed, the likelihood for litigation increases (Hickson et al., 2001). Common reasons for pursuing legal recourse include communication problems, inadequate explanations of procedures and treatments, feeling hurried by a physician, a lack of interpersonal warmth, and non-empathy (Hickson et al., 2001). After evaluating the organizational statements from physicians and facilities involved in the cases included in our sample, two improvements for applied practitioners were noted, including the need for: (1) responding with honestly and empathy, and (2) improving death and grief counseling services.

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Responding With Honesty and Empathy Following the death of a medical tourist patient, it is often traveling companions and/or distant family members who make important decisions such as requesting a second autopsy (if needed), requesting formal investigations, and making transportation arrangements for the return of the patient’s body. In several cases, MTPs did not immediately contact family members or the emergency contacts listed on medical contact forms (P1). Some families received different accounts of the stories about the patient’s death (P12); and there were discrepancies about the cause of death between hospitals, police, and mortuaries (P1). Brown and colleagues (2001) argue malpractice is reduced when providers can demonstrate clear evidence the patient was fully informed about the risks and benefits of the treatments and was provided the opportunity to make an informed choice. Still in some MT mortality cases, representatives in healthcare facilities of MTPs denied the patient was ever a client, and avoided family and friends phone calls.

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Improved Death and Grief Counseling Organizational empathetic responses can range from making referrals and recommendations to social support groups to assisting with grief resulting from sudden death. Grief counseling was not present in any media reports following a medical tourism patient’s death. Bereavement counseling is assistance and support to people with emotional and psychological stress following the death of a loved one. The emotional loss was expressed by many family members of medical tourists. P47’s mother exclaimed “This is so devastating. We can’t believe it. It’s still like a nightmare. My daughter is now coming home in a box.” Sudden death bereavement refers to a situation in which there is no expectation of death prior to a person’s passing. Death is emotionally costly, legally complex; a practical challenge in social and physical terms. Those who experience a sudden death are “unprepared for bereavement and suffer more than people who have expectancy of death prior to a person’s passing,” (Frost, Honeycutt, & Heath, 2017, p. 327). Bereaved individuals, whose loved ones pass unexpectedly, are more likely to grieve more intensely (Parkes, 1975), endure longer lasting grief (Parkes & Weiss, 1983; Tsai et al., 2016), and may develop psychological and physical health issues themselves (Lundin, 1984). Extant literature indicates that people who are unprepared for bereavement have a stronger need for social support from their community and from health professionals (Tsai et al., 2016). No evidence of grief counseling was found within this dataset. This is a noted weakness throughout the medical tourism industry, including practitioners, facilitators, and navigators. Additional focus on the development of health information resources and intervention materials is needed to help extended family members and friends transition and cope with unexpected, sudden death resulting from surgical or anesthesia complications in medical tourism encounters.

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DISCUSSION AND LIMITATIONS Our analysis found that the instructional and educational information contained within media reports of medical tourism patient deaths is often vague and abstract, holding little informational value for audiences. Further refinement of key messages and detailed strategies to produce positive outcomes is needed. We argue that patients need to realize there are bad doctors and adapt their health information seeking behaviors to accurately research the physician’s background and performance record, including the skills and qualifications to perform the specific procedure(s) sought. We also advocate for careful consideration of post-operative convalescent care for high-risk operations. Patients need to be aware of what they sign, and should avoid bypassing steps in the process, including necessary pre-operative medical screenings and protocols. We feel these cases highlight the importance of trust in the physician-patient dyad and reveal the need for medical tourists, prior to travel, to disclose honest and accurate information to MTFs, MTPs, and family and friends. Finally, these cases call attention to the short-term and longterm needs of medical tourists, and highlight the importance of proper financial, legal, will, and estate and healthcare planning. No media representations included in this study indicated if the patients had advanced care directives or powers of attorney in place prior to seeking and receiving treatment abroad. Appropriate legal preparation and planning is needed to ensure the patients’ wishes are clear. Because complications may occur several weeks or months following surgery, long-term planning considerations are needed to prepare for complications while anticipating positive health outcomes, relative to the scope and complexity of the procedure(s). 154

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Learning from the experiences of others can provide a useful guide for those who may one day face similar circumstances. This review of patient mortality cases and outcomes revealed that families, friends, and/or patient advocates need to be prepared to request, obtain, and review important patient documentation, and to psychologically and behaviorally overcome obstacles related to intercultural differences and international policies. The experiences of those who have lost loved ones due to medical tourism provides valuable insight into successful advocacy, outreach, and fundraising highlights the legal complexity and ethical challenges of the global healthcare marketplace. This case review of patient mortality in medical tourism also supports the need for individual MTPs to better provide empathetic responses to the family and friends of those who died seeking care, and exposes the need for grief and bereavement transitional counseling services throughout the medical tourism industry, both providers and facilitators. We acknowledge this analysis has several weaknesses and limitations. To begin, once a case was identified, extensive efforts were made to create a robust picture of the patient experience documented within the media reports. We cannot be certain in each case that specific facts and details are accurate, as we relied on the sources within the media reports. This sample is not a generalizable representation of the medical tourism industry. Based on the 2017 MTA Global Buyers Report, several popular treatments obtained though medical tourism are not represented in the sample (e.g., oncology, neurology, etc.). We are currently seeing rising rates of patient deaths in male populations seeking hair transplant surgery in India (Doley, 2016; Narayan & Debroy, 2019), and these cases are not included in this data set. Our sample was primarily female who sought international medical treatments, and this may have resulted from the search strategy and search terms used to identify cases. Some sample characteristics are explainable by travel policies which limit or restrict patient access to international healthcare options. For example, most countries require Chinese patients to enter with a valid visa, which involves a complex and troublesome application process. As a result, the process and policies may restrict Chinese patients from becoming eligible for outbound medical tourism options and help to explain why so many of those cases resulted from domestic medical tourism within the media sources analyzed. Many of these patient mortality cases emerged from the cottage industry of small, privately-owned clinics as opposed to large healthcare systems that are more likely to hold JCI or AAAAF accreditation (i.e., All India Institute of Medical Sciences). Future research that explores the treatment-specific barriers and challenges will offer new insight for shaping the risk communication such as health advisories and patient warnings for those seeking specific medical treatment abroad. Improved warning and advisory systems are needed to alert patients in high-volume, high-risk areas of cosmetic medical tourism destinations. Death is the ultimate price, and many seekers do not die, but are instead left with scars, disfigurements, or remain in need of longterm care. Patient morbidity, in contrast to mortality, is a domain of exploration that may also yield novel considerations and recommendations for those considering international healthcare treatments. Patient morbidity requires unique long-term planning and treatment processes. Currently, clusters of patients are returning to the United States with superbugs that are difficult, if not impossible, to treat, keeping medical tourism patients reliant on healthcare teams and pharmaceuticals in their home locations at great costs for significant lengths of time (Lamotte, 2019). What is clear is that the most dominant global media representations of medical tourism patient mortality occurring between 2009 and 2019 are middle-class, minority females between 25-55 years of age who seek cosmetic surgery internationally. There are no records or international databases that can be used to determine the actual numbers of patient mortality cases either domestically or internationally. In

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lieu of this, our analysis sought to glean insight to better formalize recommendations to those choosing to engage in the medical tourism marketplace.

CONCLUSION This chapter details a qualitative content analysis of 50 cases of patient mortality resulting from the process of domestic and international medical tourism. Cases were identified using worldwide news databases, and regional news networks in India, China, and the West. Findings show the most dominant global media representation of medical tourism patient mortality occurring between 2009 and 2019 is framed as minority females between 25-55 years of age who seek cosmetic surgery internationally. This work extends Turner’s (2013) findings and offers a several pragmatic considerations for medical tourism patients, the social support systems for these patients, applied medical tourism practitioners MTF/ MTPs, and the academic community.

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Niederdeppe, J., Hornik, R., Kelly, B., Frosch, D., Romantan, A., Stevens, R., ... Schwarz, S. (2007). Examining the dimensions of cancer-related information scanning and seeking behavior. Health Communication, 22(2), 153–167. doi:10.1080/10410230701454189 PMID:17668995 Parkes, C. M. (1975). Determinants of outcome following bereavement. Journal of Death and Dying, 6(4), 303–323. doi:10.2190/PR0R-GLPD-5FPB-422L Parkes, C. M., & Weiss, R. S. (1983). Recovery from bereavement. New York, NY: Basic Book. PBB. (2017). Patients Beyond Borders. Medical tourism statistics and facts. Accessed March 1, 2019 from www.patientsbeyondborders.com/medical-tourism-statistics-facts Penney, K., Snyder, J., Crooks, V. A., & Johnston, R. (2011). Risk communication and informed consent in the medical tourism industry: A thematic content analysis of Canadian broker websites. BMC Medical Ethics, 12(1), 1–9. doi:10.1186/1472-6939-12-17 PMID:21943392 Pereira, J., & Bruera, E. (1998). The Internet as a resource for palliative care and hospice: A review and proposals. Journal of Pain and Symptom Management, 16(1), 59–68. doi:10.1016/S0885-3924(98)000220 PMID:9707658 Ratzan, S. C., & Parker, R. M. (2000). Health literacy. National Library of Medicine website. www.nlm. nih.gov/archive/20061214/pubs/cbm/hliteracy.html#15 Sallah, M., & Perez, M. (2019, January 30). This business helped transform Miami into a national plastic surgery destination. Eight women died. USA Today. Retrieved February 20, 2019 from https://www. usatoday.com/in-depth/news/investigations/2019/01/31/miami-doctors-plasticsurgery-empire-becomesfloridas-deadliest-clinics/2729802002/?fbclid=IwAR2imyhjTKSLbXWGfTgPGg_KX7uBRAb9eEbqtdxZoDnl7RLhrw-qFt--iW0 Snyder, J., Johnston, R., Crooks, V. A., Morgan, J., & Adams, K. (2017). How medical tourism enables preferential access to care: Four patterns from the Canadian context. Healthcare Analysis: HCA: Journal of Health Philosophy and Policy, 25(2), 138–150. doi:10.100710728-015-0312-0 PMID:26724280 St. Johns herald and Apache news. [volume] (St. Johns, Apache Co., Ariz.), 11 April 1907. (n.d.). Chronicling America: Historic American Newspapers. Lib. of Congress. Retrieved from: https://chroniclingamerica.loc.gov/lccn/sn95060582/1907-04-11/ed-1/seq-8/

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Tsai, W., Prigerson, H. G., Li, C., Chou, W., Kuo, S., & Tang, S. T. (2016). Longitudinal changes and predictors of prolonged grief for bereaved family caregivers over the first 2 years after the terminally ill cancer patient’s death. Palliative Medicine, 30(5), 495–503. doi:10.1177/0269216315603261 PMID:26311571 Turner, L. (2013). Patient mortality in medical tourism. Oxford University Press; doi:10.1093/acprof:o so/9780199917907.003.0001 Turner, L. G. (2011). Quality in healthcare and globalization of health services: Accreditation and regulatory oversight of medical tourism companies. International Journal for Quality in Healthcare: Journal of the International Society for Quality in Healthcare, 23(1), 1–7. doi:10.1093/intqhc/mzq078 PMID:21148210

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ENDNOTES 1



2



Due to regulatory oversight and public information restrictions in China, Google and other popular western search engines were determined to be insufficient in locating stories of patient mortality cases in this region. The case of P9 was marked as DNC “Death Not Confirmed,” but death was likely, as continued reporting on this case was not available to confirm death.

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This research was previously published in Global Issues and Innovative Solutions in Healthcare, Culture, and the Environment; pages 206-225, copyright year 2020 by Information Science Reference (an imprint of IGI Global).

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APPENDIX

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Table 1. Descriptions of patient mortality cases included in analysis

continues on following page

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Table 1. Continued

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Chapter 10

Representation of Patients With Rare Diseases in Spanish Media Paloma López Villafranca https://orcid.org/0000-0003-4193-1365 University of Málaga, Spain

ABSTRACT There are more than 360 associations of patients with rare diseases in Spain that strive for visibility to obtain funding and encourage clinical pathologies. The Spanish Year of Rare Diseases has been a considerable effort to be part of media agenda since 2013 and a “collective voice” throughout the media has been encouraged with the international initiatives devoted to the cause. Over the past years, representation of patients with rare diseases in Spanish media has been very superficial, despite the renewed interest during the Spanish Year of Rare Diseases. Certain cases as “Paco Sanz” or “Los Padres de la Pequeña Nadia” have negatively affected this representation by using the disease to pursue economic benefit. This chapter reports on the representation of rare diseases through Spanish media and the way it evolved in the last 6 years. The findings highlight the effort that has been made by patient advocacy groups with rare diseases and their relatives and caregivers, who have been recognized and proactive to get the treatment and medication needed.

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INTRODUCTION Rare diseases are characterized by a low prevalence in general population, but they are often chronic, life-threatening and a high rate of people with such diseases are very likely to experience a deterioration in quality of life (Avellaneda, Izquierdo, Torrent-Farnell, & Rámon, 2007; Aymé & Schmidtke, 2007; Cohen & Biesecher, 2010; López-Bastida, Oliva-Moreno, Linertová, & Serrano-Aguilar, 2016; LópezBastida, Perestelo-Pérez, Mónton-Alvarez, Serrano-Aguilar, 2008; Pasculli, Resta, Guastamacchia, Suppressa, & Sabbà, 2004). According to the World Health Organizations (WHO, 2012), rare diseases are those who affect less than 100.000 patients, and they may stem from both a genetic condition and/ or environmental cause or bacterial infection (Hunter, 2005). DOI: 10.4018/978-1-6684-2414-8.ch010

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 Representation of Patients With Rare Diseases in Spanish Media

These diseases often affect the individual’s longevity, being incurable and a threat to life. It was not until 1980s that policymakers and general community considered rare diseases worthy of scholarly attention. Avellaneda and colleagues (2007, p.178) claim that this interest has been a result of improving health conditions, increase in life expectancy and wellbeing in population (Aymé, Kole, & Groft, 2008). Commenting on these recent developments in society, Carretón and López (2016) draw our attention to the fact that these “orphan patients” (Kontoghiorghe, Andreou, Constantinou, & Kontoghiorghes, 2014) with rare diseases may have suffered from disease heritage and still face an ‘unrecognized risk’ (Trujillano, et al., 2017). The Spanish Federation of Rare Diseases, FEDER (2018)1 points out that there are more than 6000 rare diseases affecting 300 million people worldwide (cf. ASHUA, 2018) and more than 3 million patients in Spain (FEDER, 2018a). In terms of disease diagnosis and treatment, an average of five years is the estimated time that patients take to be diagnosed with the disease and, in 20% of the cases, it can exceed 10 years to have a proper diagnosis. Almost half of the patients do not receive any treatment and the same proportion show no improvements and get worse in their disease (FEDER, 2018b). Escobar (2018) argues that the major problem that patients and caregivers are facing is the lack of access to reliable information, physicians and experts in the field. As a result, they face a delay in disease diagnosis and, therefore, treatment (Knight, & Senior, 2006; Zurynski et al., 2017). In Spain, there have been some attempts to raise awareness to rare diseases and its importance. For example, the Council of Ministers declared 2013 as the The Spanish Year of Rare Diseases with the purpose of uniting citizens and foster knowledge towards these diseases. The strategy adopted by the Ministry of Health (Ministerio de Sanidad y Política Social, 2009) fall under three courses of action: (a) sanitary (i.e. prevention and detection); (b) scientific (research promotion); and (c) social (through information and sensitization campaigns). In 2016, the International Year of Rare Diseases was celebrated and following the action approved by the Spanish State in March 2015, the health, social and economic consequences of rare diseases were analyzed. Subsequently, the Ministry of Health, Social Services and Equality of Spain addressed the following priorities: improving medical and psychosocial care of patients and their families; advancing research; and raising awareness to rare diseases among general population (Ministerio de Sanidad y Política Social, 2016). In this chapter, a follow-up of a previous research undertaken by the author in 2013 in the field of communication and rare diseases is discussed and updated. In specific, it covers: (a) the courses of action carried out by patient organizations; (b) identify the patients’ problems in coping with the disease; and (c) strategies adopted by public and private organizations to raise awareness towards rare diseases in the community. Whilst there has been a lack of information and resources in this field (Simoens, Cassiman, Dooms, & Picavet, 2012; Stakišaitis, Špokienė, Juškevičius, Valuckas, & Baiardi, 2007; Zurynski, Frith, Leonard, & Elliott, 2008) and the initiatives rely too much on volunteerism, health communication has become a central issue for patient organizations (Huyard, 2009; Pinto, Martin, & Chenhall, 2016; Rajasimha et al., 2014). Furthermore, media has been important to disseminate health communication (Moorhead, Hazlett, Harrison, Carrol, Irwin, & Hoving, 2013; McMullan, 2006) and media professionals have a prominent role in communicating current advances in science and medicine (Nelkin, 1996; Petersen, 2001).

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 Representation of Patients With Rare Diseases in Spanish Media

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A PORTRAIT OF PATIENTS WITH RARE DISEASES IN THE SPANISH PRESS Much of the literature (e.g. Castillo, 2012a, 2012b, 2013; Hernández et al., 2011; Holtzman et al., 2005; Lupton, 1993; Revuelta, & Semir, n.d.) on representation of patients in media have taken into account their portrayal by the press. “El Informe Quiral 10 Años, Medicina y Salud” published by Observatorio de la Comunicación de la Universidad Pompeu Fabra is a good illustration of the coverage of health in media between 1997 and 2006 (Revuelta, & Semir, n.d.). Relative to rare diseases, the publication entitled “Desafíos y estrategias comunicativas de las enfermedades raras: la investigación médica como referente” (Hernández et al., 2011) compile the work and efforts carried out by CIEBER (Centro de Investigación Biomédica en Red de las Enfermedades Raras)2, ECCO (Research Group at Universidad de Almería) 3 and GIDYC (Universidad de CEU Cardenal Herrera).4 In this latter publication, a total of 2455 pieces of information and photos were analyzed, in which 335 different rare diseases were identified. In addition, a set courses of action were proposed in order to create awareness towards rare diseases and overcome the lack of information validated by official political sources or/and a patient spokesperson. In 2014, the Spanish “Observatorio sobre Enfermedades Raras” (OBSER, 2019)5 is also an example of an entity that analyzes information and communication practices about rare diseases and reach medical professionals and experts on the field, aiming at ensuring the most accurate and credible information. Prior work on the visual representation of patients with rare diseases in the Spanish Press was undertaken by Castillo (2012a). Following a framing theory, it covers cognitive perception of the general public about rare diseases. In 2013, the same author (Castillo, 2013) performed a content analysis of the coverage of International Day of Rare Diseases in press from 2010 to 2012. A total of 214 articles from popular newspapers (i.e. El País6, El Mundo7, ABC8, Qué! 9, 20 Minutos y ADN10, other medical journals, regional and local newspapers, sports press and other general newspapers) have been collected, re-read and analyzed. Findings indicated that patients were represented as discouraged people, who seek visibility and obtain financial resourced for their needs. As such, Sánchez Castillo (2013, p.75) advocates the need for strengthening the connection between health institutions and information professionals. Castillo and Mercado (2014) also report that news press and information on rare diseases are usually disseminated for Human interest and, therefore there is a request for responsibilities that affect patients, physicians and scientific community as a whole. In the same vein, other authors (e.g. Arcos, 2013; Urrutia, 2013) have also analyzed the way this 2013 International Day of Rare Diseases has been covered in the media. This latter is a mixed-method analysis in the Spanish autonomous community Andalucía and, according to Urrutia (2013), the discourse that appeared in the media was poorly elaborated, leading to misleading information, incredibility of patient associations and a message of pessimism and morbidity. Bañón and Requena (2014, p.216) argue that the patients’ discourse and the interrelationship between patients and patients’ representatives may lead to metonymy and self-discrimination, based on the disease portrayal in the press. In a study investigating the role of health communication in the news press (López-Villafranca, 2016), a low percentage of communication professionals qualified to divulgate health-related information about rare diseases has been revealed. The major challenges found were: (a) lack of information, resources and time; (b) co-operation with patient organizations; and (c) few journalists specialized in health (LópezVillafranca & Castillo-Esparcia, 2018). As a result, poorly elaborated and interpreted data is likely to be published by communication agencies owing to the lack of time or/and specialization in the field. 165

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Furthermore, Santos and Pérez (2019) affirm that rare diseases should have the same coverage as other diseases, with a general focus on these pathologies. Figure 1 shows the coverage of patients with rare diseases in the Spanish newspaper El Mundo. As shown in Figure 1, the interconnection between the scientific research community and the patients is evident. Nevertheless, patients with rare diseases tend to have serious doubts about their appearance in media because of the lack of rigor and possible association of media coverage to some biases and previous cases that have negatively affected the representation of these patients by using the disease to pursue economic benefit. Some examples of cases that have negatively affected the representation of these patients are: • •

Los Padres de la Pequeña Nadia: Nadia is a girl with trichothiodystrophy (TTD), whose parents asked for compassion and money from celebrities and citizens to fund treatments that were not carried out. Paco Sanz: A patient with 2000 tumors exaggerated the syndrome in order to raise 100 000 euros for a treatment that did not exist.

Figure 1. Coverage of patients with Rare Diseases - El Mundo

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Source: https://www.elmundo.es/comunidad-valenciana/alicante/2017/02/27/58ad8695e5fdea4d408b45f2.html

In an analysis of these two cases, López-Villafranca (2018) concludes that these damaged the representation of patients with rare diseases in the media, being negative in terms of the patients’ actions and family history scams. By contrast, these are isolated cases of so many others, in which misleading information and messages of pessimism and incredibility of patient associations need to be demystified.

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 Representation of Patients With Rare Diseases in Spanish Media

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THE ROLE OF AUDIOVISUAL MEDIA IN RARE DISEASE AWARENESS Radio and television are two means of communication that can “give voice” to the voiceless and vulnerable people and, therefore, improve their visibility and demystify some stereotypes. Indeed, the way patients are represented in the media may affect the perception of general community towards the severity of the diseases, characteristics and challenges faced on a daily basis. For that, the following obstacles need to be overpassed: (a) avoid sensationalism during a sweeps period (Cooper, Roter, 2000); (b) clarify some bias in news coverage (Tanner, 2004) and (c) lack of journalists specialized in health (Leask, Hooker, & King, 2010) and involvement of the patient in news production (Aledo, 2007). Aledo (2007, p.95) highlights that the radio has the potential of informing the listeners about illness prevention, rehabilitation, technical advances, research, guides on existing services and aids, self-help associations, books and publications, and health professionals. A number of Spanish radio stations cover these rare diseases. For example, the private radio station “Onda Cero” 11, the health programme “En buenas manos” 12 addresses these diseases. Another radio station “Cope” 13, a programme “Los Decanos” targeted at older adults, has covered health issues since 1992. In the public broadcaster, “A su Salud” 14, “Alimento y Salud” 15 and “Entre probetas”16 are scientific dissemination programmes that treat these diseases. Nevertheless, it was not until 2013 that public or private television and radio stations considered rare diseases worthy of exclusive coverage. Detailed examination of discursive and audiovisual strategies of news relative to the World Rare Disease Day 2012 by Cruz and Requena (2013) suggested some improvements for covering health information through the use of these media: inform society about the concept of rare diseases and social and health problems that are faced; present data relative to the investment needed in terms of research and treatment; and offer data, images that support these pieces of information. Meanwhile, the coverage of Rare Diseases in the Spanish Public Radio Broadcasting RTVE17 was analyzed (López-Villafranca 2015a). It was found that patient organizations appeared on TVE during a series of specialized programmes (e.g. Telemaratón) (Figure 2). In fact, the author considers that patient organizations have gained some visibility and increased news coverage in both TVE and representatives of radio associations – RNE.18 Patient organizations also created their own space in the media to disseminate information and their experiences. The Internet Television Minoritaria TV19 is an example of a medium that is used to inform and create awareness to rare diseases and get resources for patients’ treatments. The Non-Governmental Alliance of Organizations of Patients with Rare Diseases, EURORDIS, also has a television channel entitled EURORDIS TV.20 This channel aims to spread news and events and vital experiences associated to rare diseases, while informing about orphan drugs21 or health policies and strengthen the interactions between scientific community, physicians, patients and general citizens. In the USA TV series “Doctor House” 22, rare diseases are also addressed (e.g. Dawson Disease, Rabies, Bubonic Wilson Disease) (Valenzuela-Rodríguez, 2012), in which the characters face with ethical dilemmas and difficulties in diagnosis (Francescutti, Nicolás y Fernández, 2011). These diseases have also been portrayed in cinema. According to Sánchez, Sánchez and Marcos (2008), cinema is also a medium that can guide citizens in their knowledge about rare diseases and create awareness to the stigmatization of such diseases as Tourette’s or Treacher Collins syndromes. This latter was covered in the American commercial movie Wonder23, released in 2018.

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 Representation of Patients With Rare Diseases in Spanish Media

Figure 2. Telemaratón - RTVE

Source: https://www.rtve.es

Figure 3. ‘Campeones’, la película Española más taquillera de 2018

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Source: http://www.solidaridaddigital.es/noticias/cultura/campeones-la-pelicula-espanola-mas-taquillera-de-2018

The movie Campeones [Champions] 24, which won the el Goya Spanish movie award in 2019, has also raised awareness to people with disabilities and some of them with rare diseases. Collectively, these coverage in audiovisual media pave the way into such values as diversity and inclusion, ensuring patients’ visibility.

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 Representation of Patients With Rare Diseases in Spanish Media

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WEB-BASED INFORMATION AND SOCIAL NETWORKS IN RARE DISEASES For Fornieles and Bañon (2011) 25, web enabled the dissemination of health information and patient support. Social networks, web pages and blogs are part of the services that patients can use in order to share their experiences and information (Kamel Boulos, & Wheeler, 2007). For the authors, social networks are ideal in order to spread the messages and create interest in citizens. Similarly, Torrente and colleagues (2010) stress the role of virtual spaces, which offer patients the possibility to share their experiences and exchange information (Nambisan, 2011), advices and emotional support (Antheunis, Tates, & Nieber, 2013; Hackworth, & Kunz, 2011; Kuehn, 2011). These virtual health communities and online support groups (Wright et al., 2013) usually depend on such variables as membership, shared activities, vision, social norms, among others. In a comprehensive analysis of communication management in the social networks of 143 patient’s organizations relative to rare diseases in Spain, Castillo-Esparcia and López-Villafranca (2016) found that their dissemination strategy is not oriented to a target audience and a close interconnection could be forged with the journalists by, for example, having a virtual press room on the web, in which such materials as press releases, dossiers, graphics, video galleries and podcasts could be easily obtained. The study by Basagoiti and Fernández Luque (2011, p.77) analyzed the role of Social Network Sites in patient initiatives, including the case ‘El Diario de Pedro.’ In this mentioned initiative, the parents of a child with the rare syndrome - the Sturge-Weber syndrome, use the social network Facebook to share their experiences and fight against the disease. The authors use such terms as “ePacientes” (ePatients), “ePadres” (eParents), “eMenores” (eChild) and “eFamilias” (eFamily) to characterize the agents involved in rare disease management. There are a number of specialized networks that address rare diseases. An example is Patientslikeme26 (2019) that was created in 2005 by Heywood brothers after Stephen Heywood was diagnosed with Amyotrophic Lateral Sclerosis (Gupta & Riis, 2011), becoming a digital tool for sharing information on the disease (Wicks et al., 2010). Another specialized network is RareConnect27 (Tommasetti, Toisi, & Cosimato, 2014), run by the organizations EURORDIS and NORD28 in order to exchange accurate information about each rare disease in different languages (e.g. French, Spanish, English, Italian, German). In Spain, the website FEDER brings together 360 patient organizations and the “Share4Rare”29 is a community that aims to unite patients, relatives and researchers towards rare diseases (Athanasiou, Nafría, Vroom, 2018). In addition, the #LoweResearchProject 30 (Subirats et al., 2018) is run by UOC, CIBERER, Universitat Oberta de Calalunya and Centro de Investigación Biomédica en Red de Enfermedades Raras, which purpose is to advance biomedical research and foster quality of life in people suffering from Lowe Syndrome through the use of the general Social Network Sites Facebook and Twitter. Health blogs also play a very important role for patient groups, in that these enable patients to share their experiences and reinforce the interconnection with health professionals. The following are known examples of these blogs: PsyBlog31, The Patient Experience32, Maternity Matters33, Bad Medicine34, Disabled People Against Cuts (DPAC)35, Dr. Grumble36, Aspie in the family37, and Frontier Psychiatrist38 (González Pacanowski, & Medina Aguerrebere, 2014). Overall, such digital tools as social network sites, websites, blogs and online videos tend to be relevant to educate, unite, create awareness towards diseases and strengthen the interconnection between patients, relatives and health professionals (López-Villafranca & Castillo-Esparcia, 2014).

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 Representation of Patients With Rare Diseases in Spanish Media

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DEVELOPING RARE DISEASE COMMUNICATION CAMPAIGNS According to Estevez and Terrón Blanco (2011), health campaigns have the purpose of giving visibility to a certain disease. In the case of rare diseases, these aim to create awareness, provide further information and raise funds for research. In Spain, these health communication campaigns are mainly performed through the use of digital media, mainly, social networks and closed groups in order to disseminate information, encourage fundraising, and ensure visibility (López-Villafranca, 2015b). The Federación Española de Enfermedades Raras, FEDER, is usually the entity that fosters these campaigns in both the traditional media and Web. One of the campaigns launched in 2014, entitled “Enfermedades Raras, Pacientes Únicos. Si no las conoces no las reconoces” [“Rare diseases, Unique patients. If you don’t know them, you don’t recognize them.”] was created by the agency Ilusionlabs39, being awarded with the prize ‘Aspid de oro 2014’. Figure 4 shows the poster for the campaign. Health video campaigns are also used in such video channels as Youtube. The challenge of the ice cube was a viral campaign to create awareness to Amyotrophic Lateral Sclerosis, in which celebrities from sports, film and entertainment industry adhered to the challenge and ‘gave voice’ to the cause (Hrastej, & Robertson, 2016; Koohy & Koohy, 2014). Among the most striking campaigns created by both patients and caregivers was Ignasi Serrahima relative to the rare disease Ectodermal Dysplasia, which affects 1 in 5000-10000 newborns and there is no treatment or cure (Killic et al., 2017).40 This disease affects the ectoderm structures or derivatives (Priolo, 2009), e.g. skin, teeth, nail, eyes, nose. Patients with this disease lack sweat glands, which may lead to serious symptoms of hyperthermia (Mortier, & Wackens, 2004). The campaign raised more than 14,800 eur through crowdfunding and enabled to fund a research project of the Spanish Association of Ectodermal Dysplasia, carried out jointly with the Medical Genetics Unit of the Hospital Pediatrics service at the Hospital Virgen de la Arrixaca de Murcia. Celebrities have also an important role in these campaigns, as it is the case of the Asosiación Síndrome Poland42 in which Spanish celebrities embraced the cause (Figure 5). Likewise, other foundations adopted the same strategy – e.g. Fundación Isabel Gemio43 or Fundación Menudos Corazones.44 Collectively, these initiatives are essential to the motte launched by the TVE Telemarathon “Todos Somos Raros, Todos Somos Únicos” [We Are All Rare, We Are All Unique]. In Spain, radio and television programmes are still the prior media in which messages of solidarity and research relative to rare diseases are disseminated. In terms of fundraising, the means have also evolved to embody short messages – SMS or platforms of crowdsourcing. In addition, Spanish celebrities from different fields, who embrace this causes, function as models to follow in the community (Wadhera, 2016). Lastly, such support of Spanish enterprises as Telefónica, La Caixa, Inditex or Mercadona have also contributed to the success of the rare disease campaigns in Spain.

CONCLUSION This chapter reported on the representation of rare diseases through Spanish media and the way it evolved during the last 6 years. It was observed that although patients with rare diseases have managed to be on the media agenda, their exposure have also been compromised.

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 Representation of Patients With Rare Diseases in Spanish Media

Figure 4. Poster for the Day of Rare Diseases in 2014

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Source: Federación Española de Enfermedades Raras, FEDER

Figure 5. Campaign – Poland Syndrome on Facebook Source: https://www.facebook.com/asociacionespanolades indromedepoland?fref=ts

Since the 2013 Spanish Year of Rare Diseases, the patient organizations have increased their impact on both the traditional media and social networks. It is worth noting, however, that these organizations often lack of economic and Human resources to carry out communication actions or hire professionals. Furthermore, there is a lack of journalists specialized in health and, as consequence, data that is published by communication agencies tend to be poorly elaborated and interpreted in a short-time period (Leask, Hooker, & King, 2010; López-Villafranca & Castillo-Esparcia, 2018). The creation of the Spanish Federation of Rare Diseases - FEDER was also a landmark in the spread of positive messages (Castillo & Mercado, 2014), information and support towards the diseases, demystifying some bias. Two important dates marked the visibility of these patients in the media: the aforementioned 2013 Spanish Year of Rare Diseases and 2016 -that corresponds to the International year devoted to rare diseases (Castillo-Esparcia & López- Villafranca, 2016; Cruz, & Requena, 2013). In recent years, rare disease patients have gained some visibility in press, radio and press, outgrowing its interest in media and communication research (Bañón, & Requena, 2014; Castillo, 2012, 2013; Urrutia, 2013; López-Villafranca & Castillo-Esparcia, 2018; Santos & Pérez, 2019). Alongside these advancements in the field, there has also been a change in the way rare disease patients were regarded – i.e, victims, unprotected or with no authority and its portrayal evolvement to people who have a role in the community and are constantly challenged in their daily lives.

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 Representation of Patients With Rare Diseases in Spanish Media

In the specific case of Spanish radio broadcasting, rare diseases have been covered with the use of indepth interviews (Castillo-Esparcia & López-Villafranca, 2016), whereas, in television, such programmes as the RTVE Telemarathon or the movement “Todos somos raros.Todos somos únicos.” [“We are all rare. We are all unique”] are limited to a short time agenda. To overcome this limitation towards television, other media formats were also effective to transmit the message – e.g. scientific debates on the radio, health-related issues in magazines and 24h updated pieces of web-based information (Díaz, 2004). Patients and caregivers also use direct contacts and events to raise public awareness to the disease and, in turn, these are likely to have an impact on traditional media, i.e. press, radio, and television. Celebrities have also an important role in campaigns in order to help patient organizations to gain visibility in the media. Audio-visual strategies have also been adopted to fight against stereotypes that often affect these patients, e.g. the movie Campeones [Champions]. Indeed, the coverage of rare diseases in audiovisual media seem to pave the way into such values as diversity and inclusion. While comparing the Spanish case with other countries, similarities can be observed in the investigations of Emerich and colleagues (2017) in Brazil that highlight the negative aspects of news in press about these diseases. In social networks, the same conclusions are reached by Jacobs et al (2016), who confirm that there is a need for the participation of patients and families in Facebook groups about these diseases. Finally, the study by Liuccio et al. (2015) concludes that it is important to promote more studies on communication and on patients’ health information and on the way to spread correct information, not alarmist and easy to decode in rare diseases. To sum up, the findings highlight the effort that has been made by patient advocacy groups with rare diseases and their relatives and caregivers, who have been recognized and proactive in order to get the treatment and medication needed.

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Arcos, J. M. (2013). El Día Mundial de las enfermedades raras en las noticias de prensa: el ejemplo de Andalucía. Discurso y Sociedad, 7(1), 224-247. Recuperado de http://www.dissoc.org/ediciones/ v07n01/DS7(1) ASHUA – Associación Síndrome Hemolítico Urémico Atípico España. (2018, February). ASHUA reivindica el papel de los pacientes em la investigación sobre el diagnóstico del SHUa em el Día Mundial de las Enfermedades Raras. Retrieved from https://www.ashua.es/blog/55 Athanasiou, D., Nafría, B., Vroom, E. (2018). Share4Rare: Social media platform dedicated to rare diseases, using collective intelligence for the generation of awareness and knowledge. Orphanet Journal of Rare Diseases 2018, 13(Suppl 2):P2, 167. doi:10.118613023-018-0895-2

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Wicks, P., Massagli, M., Frost, J., Brownstein, C., Okun, S., Vaughan, T., ... Heywood, J. (2010). Sharing health data for better outcomes on PatientsLikeMe. Journal of Medical Internet Research, 12(2), e19. doi:10.2196/jmir.1549 PMID:20542858 Wright, K. B., Bell, S. B., Wright, K. B., & Bell, S. B. (2003). Health-related support groups on the Internet: Linking empirical findings to social support and computer-mediated communication theory. Journal of Health Psychology, 8(1), 39–54. doi:10.1177/1359105303008001429 PMID:22113899 Xu, W. W., Chiu, I. H., Chen, Y., & Mukherjee, T. (2015). Twitter hashtags for health: Applying network and content analyses to understand the health knowledge sharing in a Twitter-based community of practice. Quality & Quantity, 49(4), 1361–1380. doi:10.100711135-014-0051-6

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Zurynski, Y., Deverell, M., Dalkeith, T., Johnson, S., Christodoulou, J., Leonard, H., & Elliott, E. J. (2017). Australian children living with rare diseases: Experiences of diagnosis and perceived consequences of diagnostic delays. Orphanet Journal of Rare Diseases, 12(1), 68. doi:10.118613023-0170622-4 PMID:28399928 Zurynski, Y., Frith, K., Leonard, H., & Elliott, E. (2008). Rare childhood diseases: How should we respond? Archives of Disease in Childhood, 93(12), 1071–1074. doi:10.1136/adc.2007.134940 PMID:18684747

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KEY TERMS AND DEFINITIONS Amyotrophic Lateral Sclerosis (ALS): A progressive motor neuron degeneration disease. This disease affects muscle control and movement, leading to a number of difficulties as muscle twitching, slurred speech, stiffness, respiratory failure, among others. Audio Podcasts: Episodic series of digital audio files, usually recorded about a certain theme, available on the Web and that can be downloaded. Ectodermal Dysplasia (ED): This disease affects the ectoderm structures or derivatives (Priolo, 2009), e.g. skin, teeth, nail, eyes, nose. Patients with this disease lack sweat glands, which may lead to serious symptoms of hyperthermia. FEDER (Federación de Enfermedades Raras): Spanish Federation of Rare Diseases that support more than 360 associations of patients with rare diseases in Spain. Framing Theory: A theory that overstates that media devotes more time and attention to certain events rather than others, depending on the information meaning they convey. Health Campaigns: A media campaign that addresses health interventions. Lowe Syndrome: A multisystem X-linked recessive disorder that is often characterized by anomalies in the eye, nervous system and kidney problems. Patient Organizations: Organizations that aim to support patients in policymaking, representation in such basic rights as access to health, drugs and treatments and ease the communication among patients, physicians, caregivers and other stakeholders. Poland Syndrome: Rare congenital disease that is often characterized by the absence of muscle development on one side of the body, mainly observable through the lack of chest wall muscles and webbed fingers. Press Releases: Official statements delivered by the organizations to the media. Sturge-Weber: Rare congenital disease that is often characterized by a port-wine stain birthmark and neurological and eye abnormalities. Sweeps Period: Rating time periods in which media companies reach a larger audience through a broadcast programming that meets the viewers’ likes and interests and may, subsequently, increase advertisement time, promotions and some TV show cancellations. Treacher Collins Syndrome (TCS): Genetic disorder that is often characterized by an abnormal gene that affect bone and tissue development relative to the face. There are usually deformities of the ears, eyes, cheekbones and chin. TVE: National television broadcaster in Spain.

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ENDNOTES 1 2



3



4



7 8 9 5 6

12 13 14 15 16 17 18 19 20 21 10 11

24 25 22

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23

28 29 30 31 32 33 26 27

Federación Española de Enfermedades Raras (FEDER), https://enfermedades-raras.org CIEBER (Centro de Investigación Biomédica en Red de las Enfermedades Raras), https://www. ciberer.es/en ECCO (Research Group at Universidad de Almería), http://cvirtual.ual.es/webual/jsp/investigacion/ nuevo/pInicio.jsp?id_grupo=HUM852&idioma=en GIDYC (Universidad de CEU Cardenal Herrera), https://www.uchceu.es/grupos-lineas-investigacion/ gidyc-grupo-de-investigacion-en-discapacidad-y-comunicacion OBSER (Obervatorio sobre Enfermedades Raras), https://obser.enfermedades-raras.org El País, https://elpais.com El Mundo, https://www.elmundo.es ABC, https://www.abc.es Qué, https://www.que.es/ 20 Minutos y ADN, https://www.20minutos.es/minuteca/adn/ Onda Cero, https://www.ondacero.es En buenas Manos, https://www.enbuenasmanos.com Radio COPE, https://www.cope.es A su salud, http://www.rtve.es/alacarta/audios/a-su-salud/ Alimento y salud, http://www.rtve.es/alacarta/audios/alimento-y-salud/ Entre probetas, http://www.rtve.es/alacarta/audios/entre-probetas/ Spanish Public Radio Broadcasting RTVE, http://www.rtve.es Radio Nacional en Directo– RNE, http://www.rtve.es/radio/radio-nacional/directo/ Internet Television Minoritaria TV, http://www.minoritaria.tv EURORDIS TV, https://www.eurordis.org/tv According to EURORDIS, “The orphan drugs” are medicinal products that serve to diagnose, prevent and treat life-threatening disorders are serious and rare. These drugs are entitled “orphan” because they have been overlooked by the pharmaceutical industry and, thus, non-profitable to the market owing to its low prevalence. Doctor House, https://www.imdb.com/title/tt0412142/ Movie Wonder. https://www.imdb.com/title/tt2543472/ Campeones, https://www.imdb.com/title/tt6793580/ See Book “Desafíos y estrategias comunicativa de las enfermidades raras: la investigación médica como referente” edited by CIBERER, in collaboration with Universidad de Almería and Universidad Ceu-Cardenal Herrera de Valencia, which analyze the press relative to rare diseases from 2009 to 2010 Patientslikeme, https://www.patientslikeme.com RareConnect, https://www.rareconnect.org NORD-National Organization for Rare Disorders, https://rarediseases.org “Share4Rare”, https://www.share4rare.org/diseases “#LoweResearchProject”, https://www.facebook.com/LoweResearchProject/ PsyBlog, https://www.spring.org.uk/about-this-blog The patient experience blog, http://blog.theberylinstitute.org Maternity Matters, https://blogs.psychcentral.com/maternity-matters/

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36 37 38 39 34 35

40



43 44 41 42

Bad Medicine, http://badmedicine.org Disabled People Against Cuts, https://dpac.uk.net Dr. Grumble, http://drgrumble.blogspot.com Aspie in the family, http://www.aspieinthefamily.com Frontier Psychiatrist, http://frontierpsychiatrist.co.uk Further information on the campaign can be found at: https://enfermedades-raras.org/index.php/ actualidad/2911-la-campana-enfermedades-raras-pacientes-unicos-galardonada-con-un-premioaspid-de-oro “Quiero sudar porque mis hijos no pueden”, https://enfermedades-raras.org/index.php/fundacionfeder/2-feder/3560-quiero-sudar-porque-mis-hijos-no-pueden “Asociación Española de Esclerodermia – ELA”, https://esclerodermia.com “Asociación Española SindromePoland – AESIP”, http://www.aesip.es “Fundación Isabel Gemio”, http://www.fundacionisabelgemio.com 44 “ Fundación Menudos Corazones”, https://www.menudoscorazones.org

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This research was previously published in Communicating Rare Diseases and Disorders in the Digital Age; pages 200-224, copyright year 2020 by Medical Information Science Reference (an imprint of IGI Global).

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Chapter 11

Framing Family Planning: An Analysis of Nigerian Newspaper Coverage Mistura Adebusola Salaudeen https://orcid.org/0000-0003-4495-460X Hong Kong Baptist University, Hong Kong

ABSTRACT Given the population explosion and high rate of maternal and infant mortality prevalent in many developing countries, family planning has been promoted as method of controlling the population growth and stemming the occurrence of these birth-related deaths with the mass media as the major campaign tools. This study examined the coverage of family planning-related news in selected Nigerian online newspapers from September 2017 to April 2019, measuring the presence of eight news frames. A quantitative content analysis of the stories revealed that family planning news frequently fell within the attribution of responsibility frame and solution frame. However, it was observed that not enough media attention was given to address misconceptions about family planning, and stories prompting readers to take action on family planning significantly outnumber stories that provided help-seeking information necessary to take such actions. The results provide important insights of how family planning news is reported in Nigerian newspapers.

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INTRODUCTION At a time when the world is increasingly barraged with unprecedented phenomena of lasting global consequences, the roles of the mass media as agents of socialisation, custodians of knowledge, disseminators of factual information, and keepers of truth, have never been more pronounced, particularly in relation to health issues. The mobilisation, instrumental and social control functions of the mass media place them at the crucial spot between the health directives initiated by medical experts and the adoption of health practices by the intended audience (Briggs & Hallin, 2016; Viswanath, Ramanadhan & Kontos, 2007). As sources of mediated health information, the mass media are tasked with the responsibility DOI: 10.4018/978-1-6684-2414-8.ch011

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 Framing Family Planning

of providing health information, and the way these health campaigns are presented and framed play a pivotal role in the persuasiveness and effectiveness of health behavioural change (Abroms & Maibach, 2008; Fung, 2019). This chapter, thus, delineates the impact of mediated health campaign messages on health decision making, particularly in the context of family planning-related campaigns. Through a comprehensive assessment of past literature, this chapter explores the relationship between audience exposure to family-planning related messages in the media and their adoption of family planning methods. This study further examines the level of awareness, the campaign initiatives developed and rate of adoption of family planning in Nigeria. Empirically, this study investigates the coverage of family planning-related news in selected Nigerian online newspapers. Through a qualitative content analysis, this study aims to identify the prevalence of some specific frames used by newspapers in reporting family planning news and information. The objective is to examine the rate at which newspapers address misconceptions and provide information that induce people to take positive action about family planning.

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BACKGROUND Nigeria, the most populous country in Africa and the seventh globally, with a current estimated population of 204 million (World Population Review, 2020), has a fertility rate of 5.5 births per woman (National Populations Commission, 2019), which makes the country highly susceptible to population explosion. Experts have projected that the country’s population will exceed 390 million by 2050 if measures are not taken to curb the rapid population growth (World Population Review, 2020). If left unchecked, overpopulation is capable of wreaking dire havoc with negative implications nationally and globally. Scientists have warned that unbridled population growth is likely to escalate the exhaustion of natural resources, environmental degradation, unemployment rate, food shortages, migration crises and territorial conflicts, that are currently besieging the world (Leblanc, 2018; Mensah, 2019). Health specialists have advocated that overpopulation should be discussed as a public health issue because it thrives due to inadequate birth control measures (MPH Online, 2020). While many developed nations are managing population growth and recording low fertility rates through contraceptive use, voluntary sterilization and other birth control measures (United Nations, 2017), majority of low and middle income countries, especially in Africa and Asia are recording higher birth rates and lower prevalence of birth control (Mensah, 2019; United Nations, 2017). An attendant health issue of high fertility rate and incessant births is maternal mortality. Maternal mortality is one of the numerous public health challenges facing many sub-Saharan African countries with majority of the deaths caused by complications during childbirth and abortions. The World Health Organisation (2018), estimates that 214 million women of reproductive age in developing countries are at risk of maternal mortality due to lack of modern birth control use. As part of the efforts to control the burgeoning population of the country and to stem the tide of maternal and infant deaths, the Nigerian Ministry of Health over the last 20 years have launched several information and education campaigns to sensitize the country about the health benefits of contraception use as well as to educate Nigerians about the importance of child spacing (Family Planning 2020, 2018). Much of the campaigns were focused on increasing the use of contraceptives and encouraging families to adopt family planning. Although statistics show a progressive use of contraceptives among Nigerians in the last 10 years (Family Planning 2020, 2018), the adoption of modern family planning 183

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 Framing Family Planning

Figure 1. The United Nations projection of Nigeria’s population growth

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Source: (World Population Prospect, 2019)

has however, been viewed with mixed feelings, much of which has been attributed to socio-cultural norms such as: preference for large families, religious tenets, myths, women’s lack of decision-making power related to sexual and reproductive health (Odimegwu, 1999; Adedini, Odimegwu, Imasiku & Ononopono, 2015), among others. Recent campaigns launched by the Ministry of Health are however focused on dispelling myths and misconceptions about family planning, expanding the provision of family planning services and creating enabling environment for women and girls to make informed choices about their reproductive health (Family Planning 2020, 2018), with the mass media serving as the major vehicle for dissemination of the campaign efforts. The mass media are veritable tools for the dissemination of health information and messages as they provide a stage for discourse of important health issues (Jones & Harwood, 2009) and influence public health behaviours (Cho, 2006). Numerous studies, in different countries, have provided evidence of media’s impact on reproductive health and the influence of media messages on contraceptive use (Kulkarni, 2003; Habibov, & Zainiddinov, 2015; Shrestha, 2016; Tsehay, Zegeye & Yilma, 2017; Ugboaja, Oguejiofor, Oranu, & Igwebe, 2018). Significant to the adoption of health campaign messages disseminated in the media is the way such messages are presented. While the agenda-setting function of the mass media tells the audience what to think about, framing tells the audience how to think about such messages by diagnosing, evaluating and prescribing (Entman, 1993). Thus, not only can the media make some issues more relevant than others, the manner in which the issues are presented or framed also play significant roles in the way the audience understand and perceive the issue (Parrish, Vos & Cohen, 2015). Numerous studies have examined how the mass media frame various health issues such as; obesity (Kim & Anne-Willis, 2007;

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 Framing Family Planning

Sun, Krakow, John, Liu & Weaver, 2015), depression and mental health issues (Zhang, Jin & Tang, 2015; McGinty, Kennedy-Hendricks, Choksy & Barry, 2016); autism (Holton, Weberling, Clarke, & Smith, 2012; Muhamad & Yang, 2017); HIV/AIDS (Kiptinness, Kiwanuka-Tondo, & Mo, 2019), among others. However, scholarly investigations addressing how the mass media portray and present family planning messages are scarce. Much of the research on subject matter focus instead on how exposure to family planning campaign messages on electronic media influence audience’ use of contraceptives, with surveys, experiments and interviews as the prevalent research methods. This study, therefore, hopes to fill this void in scholarship by deductively content analyzing family planning-related news and articles published over a one-year period in the online version of 10 selected Nigerian newspapers. By examining the prevalence of the following eight predefined frames; attribution of responsibility, human interest, conflict, morality, economic consequences (de Vreese, 2005; Muhamad & Yang, 2017), mobilisation (Gearhart & Trumbly-Lamsam, 2017), solution and addressing misconceptions frames in the news articles, this study contributes to the understanding of how family planning is reported in Nigerian newspapers. The study also explores how the use of certain news frames might influence public attitude towards family planning.

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Mass Media and Family Planning Print, broadcast, and most recently, digital media, have over the years played important roles, not only in disseminating health information, but also in increasing audience’ knowledge about health issues, shaping attitudes towards diseases and influencing behavioural change towards cure and preventive measures (Viswanath & Emmons, 2006; Parrish, et al., 2015). Hence, the promotion and spread of health campaign messages have typically been done via television, radio, newspapers, magazines, billboards pamphlets and social media because of their influence and pervasiveness (Tsehay, et al., 2017). Furthermore, the target audience of health campaign messages very much determines the design, the content and the media platforms through which the messages will be disseminated in order to ensure they reach the intended population and produce the intended effect (Cho & Salmon, 2007; Tsehay, et al., 2017). One of the health campaign information that have frequently flooded the media, especially in subSaharan African and South Asian countries with high birth rates, is family planning and the use of contraception (Tsehay et al, 2017). To ensure coordinated behavioural change towards family planning, media messages via contents such as; advert jingles, education-entertainment programmes, public service announcements, television and radio dramas as well as talk shows often focus on creating awareness about different birth control methods, encouraging the use of contraceptives to reduce the risk of pregnancy and sexually transmitted infections, presenting the health and economic benefits of child spacing and providing information about family planning services (Shane, Fred & Noureddine, 2007). Thus, the increased use of contraception and the growing knowledge of family planning in different parts of the world have been attributed to the prevalence of media messages on the issue (Islam & Saidul-Hassan, 2000; Keller & Brown, 2002; Kulkarni, 2003; Habibov, & Zainiddinov, 2015). Literature have documented the effects that media health campaigns have on health decision making. In the context of family planning and use of contraceptives, scholarship reveal that the effectiveness of health campaign messages differs according to the media platforms used. For instance, a study conducted by Habibov and Zainiddinov (2015) on the effects of television and radio family planning messages on the utilization of contraceptives in Central Asia, revealed that viewing family planning messages on television improves the chances of using modern contraception than listening to them on radio. Other 185

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 Framing Family Planning

studies provide evidence of a relationship between exposure to family planning message in the media and adoption of family planning methods. Shrestha’s (2016) investigation on the effects of mass media massages on family planning methods among married women in Nepal showed a significant relationship between media exposure and contraceptive use. Similarly, Tsehay, et al. (2017) who examined the impact of media exposure on adoption of family planning in Ethiopia found that exposure to TV, radio, and newspaper was positively associated with adoption of family planning and negatively associated with the number of desired children. A similar survey carried out among Nigerian women also showed a positive relationship between media exposure to family planning messages and contraceptive use (Ugboaja, et al., 2018). While these studies, majority of which were conducted in low- and middle-income countries where the birth rate is high, identify the media as a positive influence on the adoption of family planning and increase in contraceptive use, they however, do not provide an explanation for the increasing population growth, the high rate of unwanted pregnancies and the prevalence of maternal and infant mortality, especially in a country like Nigeria.

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Family Planning in Nigeria Despite the advocacy by government and development organisations on the benefits of family planning, acceptance of modern contraceptives still remains very low particularly in the Northern part of Nigeria (Duze & Mohammad, 2006; Ajaero, Odimegwu, Ajaero & Nwachukwu, 2016). The Nigeria Multiple Indicator Cluster Survey reveal that 87% of sexually active adults do not use modern or traditional contraceptives (National Bureau of Statistics, 2018) and the country still records the highest rate of maternal deaths among countries in the sub-Saharan Africa (World Bank, 2019). Empirical investigations corroborated by health experts, have blamed the low acceptance of contraceptives in Nigeria on cultural misconceptions, religious misinformation and inadequate knowledge of family planning options (Odimegwu, 1999; Adedini, et al., 2015). To tackle these challenges, the Nigerian Government, in September 2017, launched a nation-wide family planning strategy termed ‘Green Dot’. The initiative is a four-year plan to scale up promotion of family planning, to ensure women have easy access to affordable family planning and to help people identify family planning facilities in the country. The campaign targets management of the country’s population and reduction of maternal mortality and infant morbidity rate by 2021. Given that the mass media are the chief vehicles for the transmission of family planning campaign messages and are responsible for effecting behavioural change on health issues (Parrish et al., 2015), an analysis of Nigerian newspapers coverage of reporting family planning news will significantly advance understanding in this area. Thus, the focus of this study is to examine frames used by selected newspaper in reporting family planning news since the launching of the Green Dot programme.

News Framing Propounded by Goffman (1974), framing theory explains the way news media focus attention on certain events and place the events within a field of meaning. It describes how the mass media employ certain frames in presenting issues which helps the audience make sense of the issues (Scheufele, 2000). When presenting news and information, the media, intentionally or accidentally, often focus on and emphasize specific aspects of the issue, while ignoring other parts deemed irrelevant (Entman, 1993). This 186

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 Framing Family Planning

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emphasis on specific aspects of an event according to Iyengar (1991), provides media audience with the assessment and interpretation of problems or situations. Entman, (1993) noted that media frames serve four functions which include problem definition, cause diagnosis, making moral judgement and solution suggestion, adding further that the constant and strategic use of these frame functions has the potential of influencing public opinion. Over the years, literature has identified different typologies of news frames such as: episodic and thematic frames (Iyengar, 1991), issue-specific frames (Entman, 1991), generic news frames (de Vreese, 2002). While episodic, thematic and issue-specific frames are important for identifying specific topics and events, generic frames surpass thematic confines and can be applied to different topics and different cultural contexts (de Vreese, 2005). Research shows that the following five generic frames have been dominant in news stories; attribution of responsibility, human interest, morality, conflict and economy, and as such, they have been most often adopted to examine media coverage of news (e.g. Semetko & Valkenburg, 2000; de Vreese, 2002; Kozman, 2017; Muhamad & Yang, 2017). Because of its implication for health behavioural change and implementation of health policies, researchers have underscored the importance of studying media frames in the context of health (Parrish, et, al., 2015). While research on media framing of different health issues abound, very little has been done to investigate the coverage and framing of family planning news in the media. For the purpose of this study, a hybrid frame comprising of the five predefined generic new frames (de Vreese, 2005; Muhamad & Yang, 2017), mobilisation frame (Gearhart & Trumbly-Lamsam, 2017), solution frame, and misconceptions address frame was adopted to analyse the coverage of family planning news in Nigerian online newspapers. Mobilisation news frames serves as proactive cues by prompting readers to contact specific people or organizations related to the story or topic (Gearhart & Trumbly-Lamsam, 2017). To extend the focus of this research beyond previous scholarship addressing news frames, two frames – solution and misconception address frames – were adopted. Solution frame in news reports explicates how a problem can be tackled and solved. Misconception address frame in news seeks to correct misperceptions and misconceptions about the issue. Adopting framing theory, this study investigated the prevalence of each of these frames in news articles on family planning. Therefore, the following research questions were proposed to guide the study: RQ1: What are the most frequently employed frames in the coverage of family planning- related news? RQ2: Which scope of news frames are the most prevalent in the presentation of family planning news stories? RQ3a: How prevalent are newspaper stories that induce readers to take action about family planning? RQ3b: How prevalent are stories that provide information on family planning resource centres? RQ4: How often are misconceptions about family planning addressed in news coverage by selected online newspapers?

METHODOLOGY Using a deductive approach, a quantitative content analysis of family planning-related news published in 10 selected Nigerian online newspapers from September 2017 to April 2019 was conducted. A new family planning initiative – ‘Green Dot’ was launched by the Nigerian Government in September 2017.

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 Framing Family Planning

This event presented an opportunity to examine how newspapers cover family planning stories, hence, the selection of the 20-month time frame.

Sampling Procedure and Data Collection From the 37 daily Newspapers published in different parts of Nigeria with online versions, 10 were selected which include Punch, Nigerian Tribune, The Sun, The Guardian, Vanguard, The Nation, This Day, Daily Times, Sahara Reporters and Premium Times. These newspapers were selected because of their extensive circulation rate and popular online readership across the country according to Answers Africa’s (2019) survey of most read Nigerian Newspapers. Because of their wide reach and large readership, health articles published by these newspapers are likely to reach a large portion of Nigerians more than less read newspapers. Next, using ‘Family Planning’ as the key word, an online search for articles on the website of each newspaper was conducted which yielded 136 articles within the 20-month time frame. However, Sahara Reporters was excluded from the study as the search on its website yielded no family planning-related news. 40% of the total articles (N=54) was randomly selected as the final sample. All articles were accessed freely from the newspapers’ websites.

Coding Categories This study used each newspaper article about family planning as the unit of analysis. Eight categories of news frames were used for this study. Five generic frames were adopted from Semetko and Valkenburg (2000), while the last three frames were developed by the researcher because of the peculiarity of the topic of study. To identify the presence of the identified frames in the news stories, a questionnaire was used as the coding criterion. 19 items, 12 of which were adopted from Muhamad and Yang (2017) were used to measure the scope of the frames. To determine the presence of the frames in the stories, each item was coded with a yes (1) or No (0). News articles were also coded for name of newspaper and date of publication. The frames are classified as follows: •

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• • • •

Attribution of Responsibility (AR): This frame presents an issue or problem in a way that blames the cause of the problem on the government or an individual, or suggest that government or individuals have the capacity to solve the problem. Two items measured the scope of this frame (e.g. “Does the story suggest that an individual or government is responsible for the issue?”). Human Interest (HI): This frame presents an individual’s personal story about an issue. Two items measured this frame, (e.g. “Does the story provide a human example or “human face” on the issue?”) Conflict Frame (CF): This frame presents conflict or disagreement between individuals, groups, or institutions. Four items measured this frame, (e.g. “Does the story reflect disagreement between parties-individuals-groups-countries?”) Morality Frame (MF): This frame presents issues from the perspective of religious doctrines or moral ideologies. Two items measured this frame, (e.g. “Does the story contain any moral message?”) Economic Frame (EF): This frame presents an issue in terms of the economic and financial outcomes it has or will produce. Two items measured this frame, (e.g. “Is there a mention of financial losses or gains now or in the future as a result of the issue?”)

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• • •

Misconception Frame (MCF): This frame presents the misconceptions about an issue or addresses them. Two items measured this frame (e.g. “Does the story identify misconceptions about the issue?”) Solution Frame (SF): This frame presents the solutions or explanations of how an issue can be resolved. Two items measured this frame (e.g. “Does the story suggest solution(s) to the poor adoption of family planning?”). Mobilisation Frame (MBF): This frame suggests a course of action or induces the audience to take specific action. Three items measured this frame (e.g. “Does the story prompt readers to take specific behavioural action about family planning?”).

Intercoder Reliability To establish intercoder reliability, two coders – the researcher and an assistant, separately coded 10 randomly selected news articles. The second coder was trained by the researcher and coding was done based on the coding categories. Cohen’s kappa’s reliability test showed coding agreement for Attribution of Responsibility Frame (.88); Human Interest Frame (.63); Conflict Frame (.62) Morality Frame (.54) Economic Frame (.83); Misconception Frame (.74), Solution Frame (.65) and Mobilisation Frame (.72). After discrepancies and disagreements were resolved, the researcher proceeded with coding the remaining sample. Because of the dichotomous nature of the items in each scale, a Kuder-Richardson formula 20 was used to test the internal consistency of the scales which shows K-R20 for the following; AR scale (.70); HI scale (.94), CF (.88), MF (.79), EF (.72), MCF (.88), SF (.70), MBF (.71).

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FINDINGS Out of the 54 news articles on family planning, 49 (90.7%) of them were news stories, while 5 (9.3%) were feature articles. Thirty-seven (68%) of the news stories were published between July 2018 to April 2019, while 17 (31.8%) of the news stories were published in September 2017 to June 2018. This indicates that news coverage of family planning has substantially increased in the most recent 10 months after the launching of the Green Dot family planning initiative by the Nigerian government in September 2017. Furthermore, findings revealed that 44 (81.5%) stories contained Attribution of Responsibility frame (AR); 34 (66.0%) stories contained Solution frame; 30 (55.6%) stories contained Mobilisation Frame; 19 (35.2%) stories had Economic frame; 18 (33.3%) stories had Misconception frame; 11 (20.4%) stories contained Morality frame; 6 (11.1%) stories had Human Interest frame and 5 (9.3%) stories contained Conflict frame. Thus, to answer RQ1 which sought to identify the most frequently employed frames in the reportage of family planning, result, as presented in Figure 2, shows that the frame which most frequently appeared in the coverage of family planning news is Attribution of Responsibility frame with a mean score of .81, SD = .39; followed by Solution frame (M = .63, SD = .48); Mobilisation Frame (M = .56, SD =.50); Economic frame (M = .35, SD = .48); Misperception frame (M = .33, SD = .47); Morality frame (M = .20, SD = .40); Human Interest frame (M = .11, SD = .31) and Conflict frame (M = 0.6, SD = .29). RQ2 asked which scope of news frames are the most prevalent in the presentation of family planning news stories. Findings, as presented in Table 1, show that reporting about government, organization, or individual’s ability to alleviate poor adoption of family planning received the most substantial coverage 189

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 Framing Family Planning

Figure 2. Frequency of news frames used

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(n= 44, 81.5%). This was followed by scopes like; coverage about benefits of family planning (n= 34, 66.0%); solutions to poor family planning (n= 32, 59.3%); coverage prompting readers to take specific behavioural action about family planning (n=30, 55.6%); coverage about government, organization, individual being responsible for the poor adoption of family planning (n= 25, 46.3%); coverage about cost of expenses or degree of effort involved in the issue of family planning (n= 19, 35.2%); coverage about identifying misconceptions about family planning (n=18, 33.3%) and coverage suggesting family planning requires urgent action (n=17, 31.5%). Other scopes appeared in less than 30% family planning news, while scopes such as; coverage of winners and losers on the issue of family planning, and stories that offer specific social prescriptions about how to behave morally were understandably non-existent. To answer RQ3a which inquired about the prevalence of information that induce people to take specific action about family planning, result, as presented in Table 1, show that 30 (55.6%) stories presented information that encourages readers to take action on family planning. Result for RQ3b which asked about the prevalence of stories that provide information on family planning resource centres, shows that only 5 (9.3%) stories provided readers with information about family planning resource centres. RQ4 inquired about how often misconceptions about family planning were addressed in Nigerian newspapers. As reported in Table 1, 18 (33.3%) stories identified common misconceptions about family planning, while 13 (59.3%) stories focused on debunking the misconceptions.

DISCUSSION Based on the analysis of data, findings show that when reporting family planning, Nigerian newspapers most frequently employ attribution of responsibility frame. This finding is consistent with previous studies that have sought to examine the prevalence of frames in the coverage of health-related news (e.g. Muhammad & Yang, 2017). Sun, et. al., 2015) noted that attribution of responsibility is often employed by the media to shape public opinions, political attitudes and to promote desired behaviors. However,

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Table 1. Scopes of frames covered in newspapers

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Scopes of Frames

n (%)

Attribution of Responsibility Frame Story suggest that some level of the government/organization/individual is responsible for the poor adoption of family planning. Story suggest that some level of government/organization/individual has the ability to alleviate poor adoption of family planning.

25 (46.3%) 44 (81.5%)

Human Interest Frame Story provide a human example of the issue of family planning. Story go into the private or personal lives of the actors.

6 (11.1%) 5 (9.3%)

Conflict Frame Story reflect disagreement between parties/individuals/groups/countries about family planning Story shows one party/individual/group/country reproach another on the issue of family planning Story refer to two sides or to more than two sides of the issue of family planning Story refer to winners and losers on the issue of family planning

3 (5.6%) 5 (9.3%) 2 (3.7%) 0

Morality Frame Story contain moral message about family planning. Story refer to morality, God, and other religious tenets concerning family planning.

2 (3.7%) 11 (20.4%)

Economic Frame Story mentions the costs/degree of expense involved in the issue of family planning Story refers to economic consequences of pursuing or not pursuing a course of action on family planning.

19 (35.2%) 13 (24.1%)

Misconception Frame Story identifies misconceptions about family planning. Story dispels misperceptions about family planning.

18 (33.3%) 13 (24.1%)

Solution Frame Story suggest solution(s) to the poor adoption of family planning. Story presents benefits of family planning.

32 (59.3%) 34 (66.0%)

Mobilisation Frame Story suggest that family planning requires urgent action. Story prompts readers to take specific behavioural action about family planning. Story provide readers with contact information of organisations/centres related to family planning.

17 (31.5%) 30 (55.6%) 5 (9.3%)

rather than blame-placing, Nigerian newspapers focus more on allocating alleviation responsibility. Other commonly used frames in the reportage of family planning are solution frame and mobilisation frame. Considering the low adoption of family planning methods among Nigerians, it comes as no surprise that newspapers frequently employ frames that present solutions and suggest course of actions about family planning in their reportage. Economic frame and Misconception frame also enjoy substantial coverage in newspapers as newspapers often present the cost and efforts expended in increasing family planning awareness as well as the norms and beliefs that hinder the acceptance of family planning by Nigerians. However, frames such as conflict and human interest were sparsely used. One possible explanation for this, with regards to conflict frame, is because family planning is already a contested issue, especially among certain religious groups, thus, putting emphasis on the conflicting views about the issue will likely promote undesired attitudes towards family planning. The human-interest frame was least used because of the sensitivity of the issue. Presenting people’s personal life experiences about an issue like family planning may open them up to ridicule or stigmatization. The study further revealed that the scope most often covered in the reportage of family planning news is the idea that some level of government/organization/individual has the ability to alleviate poor adop-

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tion of family planning. This indicates that family planning is presented mostly as an issue that requires community involvement and individual participation in order to be achieved. Also featured prominently in newspapers are stories that present benefits of family planning, suggest solutions to poor adoption of family planning, and prompt readers to take behavioural action about family planning. Considering that family planning is still viewed with scepticism in some parts of the country, it is understandable that the media will try to change public attitudes about the issue by emphasizing its benefits and encouraging the public to take actions in adopting family planning. Newspapers also frequently covered scopes that ascribed blame for poor adoption of family planning on different entities and circumstances, while scopes under morality frame, human interest frame and conflict interest frame were least presented. While results show the emphasis newspapers place on mobilisation information frame, it is however surprising that stories prompting readers to take action on family planning significantly outnumber stories providing readers with the information needed to take such actions as only 5 stories provided readers with contact information (names, phone numbers, addresses) of organisations or centres that administer family planning. This finding echo other studies which found that majority of health-related stories failed to provide readers with the tools necessary to seek additional information (e.g. Gearhart & Trumbly-Lamsam, 2017). Thus, failing to provide help-seeking information after prompting readers to take specific actions is counterintuitive, as one might have expected journalists to arm readers with the necessary information that they need to pursue the suggested course of action. Regarding the coverage of misconceptions about family planning, findings show that news stories that identify and address misconceptions about family planning are substantial but not as frequent as expected. Given that one the major issues militating against the adoption of family planning in Nigeria are; myths and misperceptions resulting from cultural norms and religious beliefs (Odimegwu, 1999; Adedini, et al., 2015), it would have been expected that greater emphasis will be placed on frames that identify, address and debunk these misconceptions in order to improve attitudes about family planning. However, journalistic social responsibility is a possible reason for the limited focus on misperceptions of family planning. There is a need to tread lightly when reporting issues that negate cultural and religious values as these are sensitive topics that are quick to spark violence or outrage in the country.

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RECOMMENDATIONS This study has provided much needed evidence about how Nigerian newspapers employ news frames targeted at influencing attitudes towards family planning. Although the study acknowledges the efforts of newspapers in highlighting important news frames, some lapses in the reportage of family planning were identified. To effect the desired attitudinal change, the media should pay more attention to providing the audience with help-seeking mobilisation information. Furthermore, news media should focus more on tactically debunking myths and misconceptions about family planning in ways that would not tamper with cultural and religious values.

FUTURE RESEARCH DIRECTIONS It should be noted that this study is a majorly descriptive quantitative content analysis of news frames used in reporting family planning. Future studies should conduct an inductive study that will tease out 192

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other news frames that may not have been identified in the current study. Also, this research area will benefit from a qualitative content analysis that would probe into the contexts of newspaper coverage of family planning. In addition, future research should study and compare the reportage of family planning information on broadcast and digital media platforms. Furthermore, in-depth interviews of key informants in the health and media sectors can be used as supplemental data for future studies in this area to provide a more grounded understanding of this phenomenon.

CONCLUSION Overpopulation and maternal mortality are two issues that are threatening the development of many third-world countries and the overall survival of the planet. The adoption of family planning, as a measure to tackle these two threats, is unfortunately quite low among many low- and middle-income countries, due to a wide array of factors including literacy, economic, cultural, and religious reasons. Thus, the mass media play a pivotal role in creating public awareness, erasing misconceptions, communicating persuasive health campaigns in order to ensure attitudinal and behavioural change towards family planning. Studies show that exposure to mediated information about family planning has positive impact on the adoption and prevalence of family planning measures. With a view to understand the challenge of family planning adoption in the Nigerian context, this chapter tried to explore how Nigerian newspapers portray family planning information using certain news frames. As demonstrated in the research, Nigerian newspapers most often present family planning as an issue that requires collective community engagement through frequent usage of attribution of responsibility frame. Newspapers also often employ frames that present the benefits of family planning and encourage the public to adopt family planning measures. This exemplifies the mobilization function of the mass media in the facilitation of social capital engagements and adoption of good health practices. The chapter also demonstrates an inadequacy of the media in performing its social control function of changing socio-cultural norms that affect good health practices. Nigerian newspapers have yet to pay adequate attention to debunking the myths and misconceptions surrounding family planning, considering that these culture-induced myths are one of the major factors inhibiting the acceptance and adoption of family planning methods in the country. These findings bring to realisation the significance of effective communication in tackling health issues and the importance of the mass media in addressing sociocultural concerns that might hinder the implementation of good health practices.

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FUNDING This research received no specific grant from any funding agency in the public, commercial, or not-forprofit sectors.

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Entman, R. B. (1993). Framing: Toward clarification of a fractured paradigm. Journal of Communication, 43(4), 51–58. doi:10.1111/j.1460-2466.1993.tb01304.x Family Planning 2020. (2018). Nigeria Commitment Maker since 2012. Retrieved from https://www. familyplanning2020.org/nigeria Fung, T. K. F. (2019). The role of counterfactual thinking in narrative persuasion: Itsimpact on patients’ adherence to treatment regimen. Health Communication, 34(12), 1482–1493. doi:10.1080/10410236.2 018.1500432 PMID:30058843

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Gearhart, S., & Trumbly-Lamsam, T. (2017). The scoop on health: How native american newspapers frame and report health news. Health Communication, 32(6), 695–702. doi:10.1080/10410236.2016.1 168001 PMID:27404951 Goffman, E. (1974). Frame analysis: An essay on the organization of experience. Cambridge, MA: Harvard University Press. Habibov, N., & Zainiddinov, H. (2015). Effect of TV and radio family planning messages on the probability of modern contraception utilization in post‐Soviet Central Asia. The International Journal of Health Planning and Management, 32(1), 17–38. doi:10.1002/hpm.2318 PMID:26490393 Holton, A., Weberling, B., Clarke, C. E., & Smith, M. J. (2012). The blame frame: Media attribution of culpability about the MMR–autism vaccination scare. Health Communication, 27(7), 690–701. doi:10 .1080/10410236.2011.633158 PMID:22236220 Islam, M. M., & Saidul-Hassan, A. H. M. (2000). Mass Media Exposure and its Impact on Family Planning in Bangladesh. Journal of Biosocial Science, 32(4), 513–526. doi:10.1017/S0021932000005137 PMID:11075643 Iyengar, S. (1991). Is anyone responsible? How television frames political issues. University of Chicago Press. doi:10.7208/chicago/9780226388533.001.0001 Jones, S. C., & Harwood, V. (2009). Representations of autism in Australian print media. Disability & Society, 24(1), 5–18. doi:10.1080/09687590802535345 Keller, N., & Brown, D. (2002). Media interventions to promote responsible sexual behavior. Journal of Sex Research, 39(1), 67–72. doi:10.1080/00224490209552123 PMID:12476260 Kim, S.-H., & Anne-Willis, L. (2007). Talking about Obesity: News framing of who is responsible for causing and fixing the problem. Journal of Health Communication, 12(4), 359–376. doi:10.1080/10810730701326051 PMID:17558788 Kiptinness, M., Kiwanuka-Tondo, J., & Mo, P. (2019). The prevalence of HIV/AIDS frames in Kenya Newspapers: A summative content analysis of the Daily Nation. Cogent Medicine, 6(1), 1–9. doi:10.1 080/2331205X.2019.1596047 Kozman, C. (2017). Measuring issue-specific and generic frames in the media’s coverage of the steroids issue in baseball. Journalism Practice, 11(6), 777–797. doi:10.1080/17512786.2016.1190660

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Kulkarni, M. S. (2003). Exposure to mass media and its impact on the use of family planning methods by women in Goa, India. Health and Population, 26(2), 87–93. Leblanc, R. (2018, August 31). The environmental impact of overpopulation. Retrieved from https:// www.thebalancesmb.com/how-overpopulation-impacts-the-environment-4172964 McGinty, E. E., Kennedy-Hendricks, A., Choksy, S., & Barry, C. L. (2016). Trends in news media coverage of mental illness in the United States: 1995–2014. Health Affairs, 36(6), 1121–1129. doi:10.1377/ hlthaff.2016.0011 PMID:27269031

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Mensah, C. M. (2019). Reviewing the narrative concerning the impact of population growth in Africa. Lexinomica, 11(1), 43–56. Muhamad, J. W., & Yang, F. (2017). Framing autism: A content analysis of five major news frames in U.S.-based newspapers. Journal of Health Communication, 22(3), 190–197. doi:10.1080/10810730.20 16.1256453 PMID:28140775 National Bureau of Statistics. (2018). Nigeria multiple indicator cluster survey (MICS5) 2016 Fifth round. Retrieved from https://nigerianstat.gov.ng/nada/index.php/catalog/57 National Populations Commission. (2019). Nigeria demographic and health survey 2018 final report (Publication No FR359). NPC and ICF. Odimegwu, C. O. (1999). Family Planning Attitudes and Use in Nigeria: A Factor Analysis. International Family Planning Perspectives, 25(2), 86–91. doi:10.2307/2991946 Online, M. P. H. (2020). The effect of overpopulation on public health. Retrieved from https://www. mphonline.org/overpopulation-public-health/ Parrish, A. J., Vos, S. C., & Cohen, E. L. (2015). Media Effects and Health. In N. G. Harrington (Ed.), Health Communication: Theory, method and application (pp. 364–390). Routledge. Scheufele, D. A. (2000). Agenda-setting, priming, and framing revisited: Another look at cognitive effects of political communication. Mass Communication & Society, 3(2&3), 297–316. doi:10.1207/ S15327825MCS0323_07 Semetko, H. A., & Valkenburg, P. M. (2000). Framing European politics: A content analysis of press and television news. Journal of Communication, 50(2), 93–109. doi:10.1111/j.1460-2466.2000.tb02843.x Shane, V. M., Fred, A., & Noureddine, A. (2007). Contraceptive trends in developing countries DHS comparative reports (Report No CR16). Macro International. Shrestha, B. (2016). Women exposure to mass media and its impact on family planning use in Nepal. Population and Development Journal, 124-135.

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Sun, Y., Krakow, M., John, K. K., Liu, M., & Weaver, J. (2015). Framing obesity: How news frames shape attributions and behavioral responses. Journal of Health Communication, 21(2), 139–147. doi:1 0.1080/10810730.2015.1039676 PMID:26375052 Tsehay, A. K., Zegeye, D. T., & Yilma, T. M. (2017). Impact of Mass Media Exposure on Family Planning: Analysis of the Ethiopian Demography and Health Survey. Journal of Public Health in Developing Countries, 3(2), 405–412. Ugboaja, J. O., Oguejiofor, C. B., Oranu, E. O., & Igwebe, A. O. (2018). Assessing the influence of mass media on contraceptive use in Nigeria: A secondary analysis of 2013 Nigerian national demographic and health survey. The Nigerian Journal of General Practice, 16(2), 39–44. doi:10.4103/NJGP.NJGP_25_17 United Nations, Department of Economic and Social Affairs, Population Division. (2017). World family planning 2017 highlights. United Nations.

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Viswanath, K., & Emmons, K. M. (2006). Message effects and social determinants of health: Its application to cancer disparities. Journal of Communication, 56(1, suppl_1), 238–264. doi:10.1111/j.14602466.2006.00292.x Viswanath, K., Ramanadhan, S., & Kontos, E. Z. (2007). Mass media. In S. Galea (Ed.), Macrosocial determinants of population health (pp. 275–294). Springer. doi:10.1007/978-0-387-70812-6_13 World Bank. (2019). Maternal mortality ratio (modeled estimate, per 100,000 live births). Retrieved from https://data.worldbank.org/indicator/SH.STA.MMRT?locations=NG World Health Organisation. (2018, February 8). Family planning/contraception. Retrieved from https:// www.who.int/news-room/fact-sheets/detail/family-planning-contraception World Population Prospect. (2019). United Nations population estimates and projections. Retrieved from https://population.un.org/wpp/ World Population Review. (2020, February 18). Nigerian Population. Retrieved from https://worldpopulationreview.com/countries/nigeria-population/ Zhang, Y., Jin, Y., & Tang, Y. (2015). Framing depression: Cultural and organizational influences on coverage of a public health threat and attribution of responsibilities in Chinese news media, 2000-2012. Journalism & Mass Communication Quarterly, 92(1), 99–120. doi:10.1177/1077699014558553

ADDITIONAL READING Alege, S. G., Matovu, J. K. B., Ssensalire, S., & Nabiwemba, E. (2016). Knowledge, sources and use of family planning methods among women aged 15-49 years in Uganda: A cross-sectional study. The Pan African Medical Journal, 24(1), 1–12. doi:10.11604/pamj.2016.24.39.5836 PMID:27583102 Calnan, M., & Calnan, M. (2020). Framing health policy in the media: Health policy, power and politics: sociological insights. Emerald Publishing Limited. doi:10.1108/9781839093944 Connolly, S., Jah, F., Barker, K., Ryerson, W., Okon, E., Desarno, M., Bunn, J., Kyari, G., Haliru, Y., & Alli-Balogun, K. (2019). Reproductive health and family planning behaviors in North West Nigeria. The Journal of Development Communication, 30(2), 30–44.

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Fayoyin, A. (2016). Engaging social media for health communication in Africa: Approaches, results and lessons. Journal of Mass Communication & Journalism, 6(6), 1–7. Harrington, N. G. (Ed.). (2015). Health communication: Theory, Method, and Application. Routledge. Mercer, L.D., Lu, F., & Proctor, J.L. (2019). Sub-national levels and trends in contraceptive prevalence, unmet need, and demand for family planning in Nigeria with survey uncertainty. BMC Public Health 19(1752), 1-9. Thompson, T. L., Parrott, R., & Nussbaum, J. F. (Eds.). (2011). The Routledge handbook of health communication (2nd ed.). Routledge. doi:10.4324/9780203846063

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Wozniak, A. (2019). Integrative framing analysis: Framing health through words and visuals. Journal of Communication, 69(3), E7–E9. doi:10.1093/joc/jqz016

KEY TERMS AND DEFINITIONS Family Planning: The measures taken to manage, or control conception and procedures engaged in to allow spacing of children. Green Dot: A health initiative launched by the Nigerian government in 2017 to promote and improve the adoption of family methods in the country. Maternal Mortality: The susceptibility of a woman to die during pregnancy or after childbirth. Mediated Health Information: Health messages disseminated by the media to educate the public about health issues and to promote the adoption of health initiatives. Misconception Frame: The manner whereby a news media presents and addresses myths and misconceptions about an issue. News Framing: The process whereby news media highlight, emphasize and give more prominence a specific aspect of a news story. Solution Frame: The manner whereby a news media presents explanations of how an issue can be resolved.

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This research was previously published in Dialectical Perspectives on Media, Health, and Culture in Modern Africa; pages 91-115, copyright year 2021 by Information Science Reference (an imprint of IGI Global).

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APPENDIX 1: CODING SCHEME Table 2. ­ Index

Description

Questionnaire Items 1. Does the story suggest that some level of the government/organization/individual is responsible for the poor adoption of family planning? 2. Does the story suggest that some level of government/ organization/individual has the ability to alleviate the poor adoption of family planning?

1.

Attribution of Responsibility

News article that contain the following: blames the cause of the problem on the government/organization/individual; suggests government/organization/individual can reduce the problem.

2.

Human Interest

News articles that contain the following: present the story from the perspective of individual’s personal life or experiences.

1. Does the story provide a human example of the issue of family planning? 2. Does the story go into the private or personal lives of the actors?

Conflict

News articles that contain the following: place emphasis on disagreements between individuals, groups, countries; focus on competitions between parties; focus on winners and/or losers in a conflict; present two sides of an argument or debate.

1. Does the story reflect disagreement between partiesindividuals-groups-countries about family planning? 2.Does one party/individual/group/country reproach another on the issue of family planning? 3. Does the story refer to two sides or to more than two sides of the issue of family planning? 4. Does the story refer to winners and losers on the issue?

Morality

News articles that contain the following: present an issue in the context of moral and/ or religious values; contain moral/religious message or connotation.

1. Does the story contain any moral message about family planning? 2. Does the story make reference to morality, God, and other religious tenets concerning family planning?

Economic

News articles that contain the following: presents the economic implications of an issue; mentions financial investments involved; identifies the economic implications of an action.

1. Is there a mention of the costs/degree of expense involved on the issue of family planning? 2. Is there a reference to economic consequences of pursuing or not pursuing a course of action on family planning?

Misconception

News articles that contain the following: identify myths, misperceptions; address misconceptions; debunk myths and misperceptions.

1. Does the story identify misconceptions about family planning? 2. Does the story dispel misperceptions about family planning?

Solution

News articles contain the following; mentions some ways the issue can be resolved; suggests that the issue requires immediate action.

1. Does the story suggest solution(s) to the poor adoption of family planning? 2. Does the story suggest that family planning requires urgent action?

Mobilisation

News articles that contain the following; suggest the issue requires immediate attention; suggest course of action; provide information that leads to further actions.

1. Does the story suggest that family planning requires urgent action? 2. Does the story prompt readers to take specific behavioural action about family planning? 3. Does the story provide readers with contact information of organisations/centres related to family planning?

3.

4.

5.

6

7

8

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Categories

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Framing Family Planning

APPENDIX 2: CODEBOOK 1. 2. 3. 4.

Article Number Name of Newspaper ______________________ Date of Publication________________________ Type of Article (News = 1, Feature = 0)

Attribution of responsibility: 5. Does the story suggest that some level of the government/organization/individual is responsible for the poor adoption of family planning? (Yes =1; No = 0) 6. Does the story suggest that some level of government/organisation/individual has the ability to alleviate poor adoption of family planning? (Yes =1; No = 0) Human Interest: 7. Does the story provide a human example of the issue of family planning? (Yes =1; No = 0) 8. Does the story go into the private or personal lives of the actors? (Yes =1; No = 0) Conflict: 9. Does the story reflect disagreement between parties-individuals-groups-countries about family planning? (Yes =1; No = 0) 10. Does one party/individual/group/country, in the story, reproach another on the issue of family planning? (Yes =1; No = 0) 11. Does the story refer to two sides or to more than two sides of the issue of family planning? (Yes =1; No = 0) 12. Does the story refer to winners and losers on the issue of family planning? (Yes =1; No = 0) Morality:

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13. Does the story contain any moral message about family planning? (Yes =1; No = 0) 14. Does the story make reference to morality, God, and other religious tenets concerning family planning? (Yes =1; No = 0) Economic: 15. Is there a mention of the costs/degree of expense involved in the issue of family planning? (Yes =1; No = 0) 16. Is there a reference to economic consequences of pursuing or not pursuing a course of action on family planning? (Yes =1; No = 0)

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Framing Family Planning

Misconception: 17. Does the story identify misconceptions about family planning? (Yes =1; No = 0) 18. Does the story dispel misperceptions about family planning? (Yes =1; No = 0) Solution Frame: 19. Does the story suggest solution(s) to the poor adoption of family planning? (Yes =1; No = 0) 20. Does the story present the benefits of family planning? (Yes = 1; No = 0) Mobilisation Frame:

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21. Does the story suggest that family planning requires urgent action? (Yes =1; No = 0) 22. Does the story prompt readers to take specific behavioural action about family planning? (Yes = 1; No = 0) 23. Does the story provide readers with contact information of organisations/centres related to family planning? (Yes = 1; No = 0)

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Section 3

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Patient-Provider Communication, Literacy, and Empowerment

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Chapter 12

Health Literacy and Patient -Reported Outcomes Maria Irene Bellini Imperial College London, UK Andre Kubler Imperial College London, UK

ABSTRACT Modern healthcare needs to identify parameters for high-quality care. Quality improvement is the key for advancing in healthcare, and the new assessment tool shifts from a disease-centered outcome to a patient-centered outcome. Clinical outcome such as morbidity and mortality are directly connected and interdependent from patient-reported outcomes: well-informed patients who decide with their healthcare provider what treatment is best for them have better outcomes and higher patient satisfaction rates. These subjective data collected by rigorous, meaningful, and scientific methods and presented in a utilizable format can be used to create care objectives towards which both the surgeon and their patient can travel. Time has come to carry patient-centered outcomes from research into decision making and daily care plans. This chapter outlines a focus beyond life-prolonging therapy, aiming to minimize the negative effects of treatment, optimize quality of life, and align medical decisions with patient expectations.

INTRODUCTION

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The physician should not treat the disease but the patient who is suffering from it – Maimonides 1134-1204 The goal of medicine is to improve the quality and duration of life through the treatment or prevention of disease. How do we measure this impact? Quantity of life is easily calculated, but quality of life is subjective and difficult to measure. Objective health measures do not necessarily correlate with patient values (Contopoulos-Ioannidis, Karvouni, Kouri, & Ioannidis, 2009). By allowing patients to report their opinions on quality of life, through patient reported outcomes (PROs), quantitative data of meaning can DOI: 10.4018/978-1-6684-2414-8.ch012

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 Health Literacy and Patient -Reported Outcomes

drive medical progress. PROs are now widely accepted as valid outcome measures, and this is reflected in the utilisation of PRO data in approval pathways for medical interventions. PROs are self-reported assessments that quantify symptoms, physical function or emotional wellbeing; related either to a specific condition, or to general quality of life (Higgins, Green, & The Cochrane Collaboration, 2011). Typically, a PRO instrument consists of several items (questions or statements) to which a Likert scale or binary response is recorded. Individual statements can be scored and sometimes an overall score is calculated. Some scores also include a generic overall scale which can be compared to the contributing individual item scores. PROs can also contain temporal data; asking about experiences either at a singular moment in time, or over a period of time. This subjectivity is the value of the derived data, but utilisation of data comes with some caveats. PROs are at risk of bias from the researchers that generate them, the populations in which they were generated, and the cultures in which they are accepted. For example, the Nottingham Health Profile (NHP), was derived from statements made by individuals seeking healthcare in Nottingham, UK, and reflects the overall culture of this area at the time it was generated. From 2,200 statements made by patients, 88 were picked by researchers to represent quality of life, reflecting the values of the researchers. The NHP became a widely-accepted measure of ‘quality of life’; reflecting the culture of health research at the time. It has fallen from favour due to the lack of validation studies, which reflects the current more rigorous academic culture. Such flux is a reason for reticence in accepting PRO data, but with appropriate methodological development, objectivity and validity can be measured, and such hurdles overcome. Although the quality of PRO data is improving, the variety of PRO instruments and poor data reporting causes a challenge in synthesising PRO data (King et al., 2017). The importance of PRO data for policy makers, researchers and clinicians has seen the development of initiatives to try and increase their use, and improve the quality of PRO data collection (Table 1). PROs are often confused with patient reported experience measures (PREMs) which measure patients attitudes towards healthcare. Such confusion can also drive inappropriate responses to PRO data and can confound PRO studies (Black, Varaganum, & Hutchings, 2014). The health community must become more literate in PRO methodology if they are to collaborate with patients to generate the weight of evidence required to change clinical practice in a way that is meaningful to patients. This chapter describes the fundamental aspects of PROs; how they are collected, utilised and analysed, before proceeding to speculate how they might, in future, be integrated into clinical practice.

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INTRINSIC QUALITIES OF PRO DATA The clinician must be careful when they collect and use PRO data. Several strategies exist for making judgements on the utility, relevance and interpretation of collected PRO data (McLeod, Coon, Martin, Fehnel, & Hays, 2011; Mokkink et al., 2010). Accurate use of PRO data requires an understanding of the qualities of PROs; and this requires an understanding of some basic psychometric theory. PRO data analysis is based on two psychometric theories, Classical Test Theory (CTT) and Item Response Theory (IRT); which are discussed in the latter part of this chapter. The understanding of these theories requires comprehension of the terms that underpin them.

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 Health Literacy and Patient -Reported Outcomes

Table 1. Large scale initiatives aiming to collect, validate and standardise PROs Initiative

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Patient Reported Outcomes Measurement Information System (PROMIS)

Website

Summary

http://www.nihpromis.com

A collection of PRO compiled by the NIH which are integrated into a computer based reporting system.

The International Consortium for Health Outcomes Measurement (ICHOM)

http://www.ichom.org

A collaboration aiming to produce outcome measures combining PROs with physiologic and health economy data, with a view to creating a global standard for health outcome reporting.

Patient-Centred Outcomes Research Institute (PCORI)

http://www.pcori.org

Funding organisation aiming to enhance patientdirected research and care through delivery of patient centred health information

European Organisation for the Research and Treatment of Cancer (EORTC)

http://www.eortc.org

Organisation that provides cancer related quality of life questionnaires (EORTC QLQ)

EuroQol

https://euroqol.org

Developers of the most widely used quality of life questionnaire the EQ-5D, which aims to be a globally standardised measure of health outcomes

Mapi Research Trust: PatientReported Outcome and Quality of Life Instruments Database (PROQOLID)

http://mapi-trust.org

Extensive database of quality of life measures in a searchable format

Cochrane Patient Reported Outcome Methods Group

http://methods.cochrane.org/pro/ welcome

A subgroup of the Cochrane collaborative with a special interest in standardising and reporting metaanalysis of PRO data

Consensus-based Standards for the selection of health Measurement Instruments (COSMIN)

http://www.cosmin.nl

Institute aiming to improve selection of health outcome measures. Provides peer-reviewed checklists useful for both PRO selection and critical review

Medical Outcomes Trust (Lohr et al., 1996)

http://www.outcomes-trust.org

Database of outcome measures, appears to no longer be updated

Registry of Outcome Measures

http://www.researchrom.com

Neurology and general quality of life questionnaires database

The On-Line Guide to Quality of Life assessment (OLGA)

http://www.olga-qol.com

Membership only database of quality of life assessments

Core Outcome Measures in Effectiveness Trials Initiative (COMET)

http://www.comet-initiative.org

Organisation aimed at standardising development and application of quality of life measurements

International Society for Quality of Life Research (ISOQOL)

http://www.isoqol.org

Non-profit membership based organisation promoting quality of life research aiming to establish standards of practice

Centres for Disease Control, Health related quality of Life (CDC-HRQOL)

https://www.cdc.gov/hrqol/index.htm

The CDC website provides tools and education related to quality of life assessment

http://www.rehabmeasures.org

A database which includes some PRO measures as well as data on traditional rehab measures; usefully includes reference literature on metrics of many of the scales.

Rehabilitation Measures Database

Construct and Content A construct is a theoretical (and subjective) model that the PRO aims to measure. For example, ‘quality of life’ is a construct that has no single definition. Instead it is derived from a subjective interpretation

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 Health Literacy and Patient -Reported Outcomes

of a number of components. A PRO can explore the construct of ‘quality of life’ by asking for quantitative answers about these components of quality of life. These questions about these components are the content of a PRO, and the theoretical link between these components and the overall measure is the construct. A PRO instrument may be unimodal (containing a singular question), or multimodal (containing multiple questions or question areas), or a combination of both. A unimodal construct allows a respondent to bring their own opinion to a measure; for example, a patient may report an overall change in quality of life in a unimodal instrument, despite reporting no significant change across a multimodal response. If this occurs it suggests the content of the multimodal construct does not reflect the patient’s own construct of ‘quality of life’. The best PROs use evidence-based constructs; which require input from the target population through qualitative methodologies (Patrick et al., 2011). For complex constructs such as quality of life, subdivisions of the construct can be used to understand how an intervention impacts overall quality of life. For example, the multimodal EQ-5D includes questions about mobility, self-care, usual activities, pain/discomfort and anxiety/depression (EuroQol-Group, 1990). This means that overall changes in quality of life can be attributed to individual components of the PRO measure; which may help to increase the validity of an observed effect. For example, an intervention that aims to reduce pain would be hypothesised to influence overall quality of life, with specific effects in pain/discomfort, and lesser effects in the remaining areas. Condition specific PRO instruments also exist – allowing for investigation of effects on specific symptoms of interest, for example, nausea in chemotherapeutic trials (Lindley et al., 1992). It is essential to remember that although often assumed that these condition specific PROs measure quality of life, they are only surrogate markers and in isolation of little significance to patients.

Validity Validity describes how well the measurements correlate with changes in the construct being measured. The simplest assessment is face-validity; in which the interpreter relies on their own understanding of a construct to decide whether the questions included in a PRO reflect the construct accurately. More formal measures of validity exist. It is key to remember that constructs are evolving, and influenced by each set of data collected about them – either strengthening the theory of the relations within the construct or weakening them. This philosophical nature of psychometric measures leads to debate about their value, to engage in this debate some accepted definitions must be understood:

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Content Validity This metric describes the degree to which the PRO instrument examines the components of the construct. This can be formalised using a Delphi method, ideally involving patients, to decide on what really are important measureable components of a construct; but is often derived from a consensus of experts with little formal development.

Construct Validity The definition of construct validity is the degree to which a test measures what it claims to be measuring. Cronbach and Meehl proposed a widely accepted process underling construct validity: First, the construct needs to exist within a set of ‘laws’ which are in some way measureable, and interconnected (a 206

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 Health Literacy and Patient -Reported Outcomes

nomological network). Second, these elements of the construct or the construct itself need to be evaluated. Finally, the degree of agreement between them need to tested in an appropriate sample (Cronbach & Meehl, 1955). Construct validity can also be strengthened by contrasting opposite concepts within the construct (i.e. divergent); for example, when exploring the construct of mobility one would expect the degree of pain to decrease as the amount of mobility increased. A correlation co-efficient can be calculated which suggests the degree to which the content within a construct are related to each other; validating the existence of the proposed nomological network. There may also be correlation with objective, non-PRO data, which may further validate the construct. Depending on whether IRT or CCT are used, quantitative measures of construct validity can be used (Mokkink et al., 2010).

Structural Validity The degree to which the weighting of the components (either number, or contribution to an overall score) within a PRO reflect their effect on the overall outcome of a construct (Mokkink et al., 2010).

Cross-Cultural Validity Constructs may exist cross-culturally. PROs will be affected to a varying degree by translation to new cultures, exhibiting either a high or low degree of cultural validity (Mokkink et al., 2010).

Criterion Validity On certain occasions, there may be a gold standard to which the PRO data can be compared; the agreement with this gold-standard is known as criterion validity (Mokkink et al., 2010).

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Reliability Reliability is the degree to which a measurement reflects the actual value of what it measures. This can be interpreted as the degree of freedom from measurement error. The COSMIN extended definition is ‘The extent to which scores for patients who have not changed are the same for repeated measurement under several conditions: e.g. using different sets of items from the same health related-patient reported outcomes (HR- PRO) (internal consistency); over time (test-retest); by different persons on the same occasion (inter-rater); or by the same persons (i.e. raters or responders) on different occasions (intrarater). In contrast to reliability, a measurement error can be quantified, and reflects the systematic and random error not attributed to true change’ (Mokkink et al., 2010). Reliability is a description of the PRO instrument, and should not be confused with the reliability of data from a study.

Responsiveness/Sensitivity Responsiveness of an instrument is the ability to detect a change in a construct. This can be defined at the overall level; but also, whether each item may be responsive to change. There are published methods for determining the responsiveness of an instrument (Dennis Revicki, Ron D. Hays, David Cella, & Jeff Sloan, 2008). Responsiveness may vary across a given scale (de Vet et al., 2015).

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 Health Literacy and Patient -Reported Outcomes

Psychometric Theories In general, two psychometric concepts are used to develop PRO instruments: classical test theory and item response theory. A numerical degree of validity, reliability and responsiveness can be defined in relation to these psychometric frameworks.

Classical Test Theory (CTT) In CTT, an assumption is made that a tool’s outcome is the consequence of the true score for the construct and some error. CTT then seeks to assess the probable values of the error and utilise the observed value to understand the true value. Crucially, it evaluates the entire tool based upon presumed equal contribution of each item within the construct, as oppose to IRT which considers the contribution of individual items to the overall error and validity. In CTT the degree of agreement is quantified using Cronbach’s alpha.

Item Response Theory (IRT) IRT is more complex than CTT. It assumes that the construct is a unidimensional trait, the items of the test are locally independent (i.e. although items may be related to each other, their relationship is not causal), and that a person’s response can be modelled using an item response function. As oppose to assuming error for the overall tool to predict outcome, item response theory uses individual item response validity to generate numerical data about reliability, validity and responsiveness. In IRT the degree of agreement is quantified using a goodness of fit statistic.

USING PRO INSTRUMENTS Once a researcher has gained an understanding of PRO instruments, they can consider utilising them. In addition to assuring the quality of the instrument to be used, researchers utilising PRO instruments must also consider some more practical elements prior to initiating a study. What is the respondent and administrative burden? Is it applicable to the target population? (for example; can it be adapted for the visually impaired or are there valid translations?) Large databases of PROs facilitating the identification and selection of robust tools (table 1).

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PRESENTING PRO DATA Consolidated Standards of Reporting Patient Trials (CONSORT) have developed guidelines for the presentation of PRO data (Calvert et al., 2013). They recommend inclusion of what type of outcome the PRO is (primary or secondary) – a suggestion which implies that this decision must be pre-defined during planning. CONSORT also recommend the provision of evidence of validity and reliability of the PRO. Finally, they suggest the statistical approaches to missing data, as well as the limitations of the PRO data be discussed. A checklist is provided on their website (www.consort-statement.org).

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 Health Literacy and Patient -Reported Outcomes

INTERPRETING PRO DATA COSMIN provide a comprehensive manual and checklist for evaluating the quality of PRO studies (available at www.cosmin.nl) based on a rigorous development process (Mokkink et al., 2010). Alternative options for day-to-day interpretation of PRO studies exist (Alrubaiy, Hutchings, & Williams, 2014; Lohr et al., 1996; Terwee et al.; Valderas et al., 2008). Cochrane group authors have also published advice on PRO meta-analysis (Johnston et al., 2013). Whichever strategy is used to appraise PRO data, some simple concepts are vital to understand:

Minimally Important Difference Perhaps most important for clinical interpretation is the concept of the minimally important difference (MID) or minimally important change. MID is the change in value that corresponds to a perceivable difference in health as related to the construct. Methods for calculating MID are available (D. Revicki, R. D. Hays, D. Cella, & J. Sloan, 2008). MID is context specific and can also be influenced by the average baseline of the subject (de Vet et al., 2015; Olsen et al., 2017).

Floor and Ceiling Effect Certain scales may exhibit end of spectrum effects. This occurs when a score cannot detect improvements above or below a certain level, understanding where a population sits with relation to the floor or ceiling of scale is important before lack of effect (or in particular non-inferiority) is applied (Terwee et al., 2007).

Standardised Mean Differences Meta-analysis leads to a challenge in understanding change particularly when different instruments have been used. By basing pooled calculations on the effect of change in the standard deviations of the experimental and control groups an overall estimate can be made. This is known as the standardised mean difference and is the most accepted outcome for pooling meta-analysis data. This references contains an extensive discussion regarding meta-analysis of patient reported outcomes (Johnston et al., 2013).

PRO INFLUENCE ON CLINICAL PRACTICE

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Although there is a vast number of PROs, it is worth being aware of some of the most common instruments:

EQ-5D The most commonly utilised PRO instrument is the EQ-5D, which assesses health-related quality of life across 5 domains – mobility, self-care, usual activities, pain/discomfort and anxiety/depression and also includes a generic 100 point visual analogue scale (VAS) (EuroQol-Group, 1990). The minimally important difference in specific conditions is between 0.07-0.12 (over a range of 0-1) on the EQ-5D and 8-12 on the 100 point VAS (Pickard, Neary, & Cella, 2007). It is the recommended PRO for calculating

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 Health Literacy and Patient -Reported Outcomes

quality adjusted life-years (QALYs), which is used by the National Institute for Health and Care Excellence (NICE) when calculating the cost-benefit of health interventions (NICE, 2013).

Sickness Impact Profile Another commonly used quality of life scale is the Sickness Impact Profile (SIP) which has 136 items in 12 domains: sleep and rest, eating, work, home management, recreation and pastimes, ambulation, mobility, body care and movement, social interaction, alertness behaviour, emotional behaviour, and communication (Bergner, Bobbitt, Carter, & Gilson, 1981). A shorter 68 question (SIP-68) version of this questionnaire exists (Nanda, McLendon, Andresen, & Armbrecht, 2003).

Health Utilities Index The health utilities index (HUI) now in its third form is, as the name suggests, utilitarian. The domains it extends across include vision, hearing, speech, ambulation, dexterity, emotion, cognition & pain (Furlong W, Feeny D, Torrance G, & Barr R T, 2001); and responses in the HUI-3 are scored on a 6-point scale. The HUI has an estimated MID of 0.02-0.04 (Samsa et al., 1999).

Medical Outcomes Study and Short Forms The Medical Outcomes Study (MOS) recorded 1,014 patient experiences health related outcomes, from English speakers in 3 US cities at 2 time-points (Tarlov et al., 1989). From this data, which included physician reported medical and psychological conditions, various short-form surveys were derived (Brazier, Usherwood, Harper, & Thomas, 1998). Validity was assessed by the ability of the surveys components to distinguish mental from physical illness effects on domains related to activity and mental-health (Ware & Sherbourne, 1992). The MID of the commonly used SF-6D is estimated to be between 0.03-0.04 across 0-1 range (Khanna et al., 2007).

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Nottingham Health Profile The Nottingham health profile was developed from patient statements collected in general practice in the 1970s. A series of studies led to a 45-item questionnaire that was validated in multiple patient groups. 38 of these statements cover 6 descriptors of symptoms, with various weightings depending on the number of questions per category (energy levels, pain, emotional reaction, sleep, social isolation, physical abilities), with the remaining 7 questions relating to affected life areas (Work, Home life, Social life, Looking after the home, Sex life, Interests and Hobbies, Vacations) (Martini & McDowell, 1976). Despite it’s relatively common use, little quality data on MID and responsiveness is available.

World Health Organization Quality of Life The World Health Organization Quality of Life (WHOQOL) includes 100 statements which cover the following domains: 1. Physical health, 2. Psychological, 3. Level of independence, 4. Social relationships, 5. Environment. It can be extended to include ‘spiritual, religious and personal beliefs’ by including a further 32 statements, covering; spiritual connection, meaning and purpose in life, experience of awe 210

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 Health Literacy and Patient -Reported Outcomes

and wonder, wholeness and integration, spiritual strength, inner peace, hope and optimism, and faith. It was generated in 14 different centres using only 300 people – 250 without disease and 50 with disease, and answers are given on a 1-5 Likert scale; 1 (not at all), 2 (a little) 3 (a moderate amount), 4 (very much) and 5 (an extreme amount) as to the degree of the subjects agreement with a given statement (WHOQOL-Group, 1998b). An estimated MID of 1 across the 100 point scale has been proposed (Den Oudsten, Zijlstra, & De Vries, 2013). A short form (WHOQOL-BREF) version also exists (WHOQOLGroup, 1998a).

PROMIS® (Patient-Reported Outcomes Measurement Information System) Promis is a National Institutes of Health (NIH) funded attempt to collect and validate paper and computerassisted PROs, in both clinical and research settings. Based in the biopsychosocial model of health, it divides scales into physical, mental and social health. PROMIS reviews measures through a rigorous process: First, constructs are defined from published literature. Next, they are reviewed by experts, patients, clinicians, and end-users through accepted qualitative methodologies. The characteristics of the included items are then interrogated thoroughly, and validity and reliability of the instruments assessed. Finally, the guidelines for interpretation of the instrument are assessed and the appropriateness of translations are reviewed. Only after completing this process are the items are included within the database. At the time of writing 332 items are included in the database, which are available through a searchable online database (Cella et al., 2007).

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PRO DATA IN PRACTICE The use of PRO data is now common across medical and surgical practice and has improved our understanding of therapeutic interventions. This is especially important for surgical interventions where immediate impacts may have rapidly measurable clinical effects, but long term sustained benefits of physiological markers might not be so apparent; for example, Mathus-Vliegen and colleagues demonstrated that weight loss surgery led not only to effective persistent weight loss, but also improvements in quality of life beyond the initial period of weight loss (Mathus-Vliegen & de Wit, 2007). In orthopaedic surgery PROs have been used to demonstrate the negative effect of waiting times on patient well-being – data that can be used to drive delivery of care (Ackerman, Bennell, & Osborne, 2011). We are reaching a period in research history where long term studies have collected quality of life data over extended periods using validated instruments. The ProtecT study demonstrated a practice changing benefit of disease monitoring over both surgical intervention and radiotherapy in prostate cancer (Donovan et al., 2016). It’s validity confirmed by correlating improved sexual function, bowel function and quality of life in the 10-years from randomisation (Donovan et al., 2016). Unfortunately, influential articles still use surrogate disease specific markers and fail to present overall quality of life changes (Labrie et al., 2013). This risks the failure to identify non-disease specific consequences of interventions. PROs also can help answer controversial questions, where physiologic data may be misleading. For example in subclinical hypothyroidism, where physiologic changes can be observed, and patients often claim symptomatic consequences, there is demonstrably no identifiable patient reported benefit (Stott et al., 2017). It is important to remember that PROs need not be confined to quality of life criteria; for example, by adapting the National Cancer Institute’s Common Terminology Criteria for 211

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 Health Literacy and Patient -Reported Outcomes

Adverse Events (CTCAE) for tablet usage, patients were empowered to accurately self-report adverse events (Basch, Dueck, Rogak, & et al., 2017).

PROs in the Consulting Room There has been a move to collecting routine patient reported outcome measures in clinical practice, and even encouragement of patients to collect and interpret their own data to guide individualised treatment (Nelson et al., 2015). There is limited data to suggest that in general this improves patient-satisfaction, but not patient-outcomes (Holmes, Lewith, Newell, Field, & Bishop, 2017). Common sense would suggest that PROs might help focus a consultation, and in certain conditions, for example depression, it is routine and advised practice (NICE, 2015). However, we would advise caution in widely adopting this strategy as it risks check-listing the patient-physician relationship, and there is not evidence to support patient outcomes at present.

Creating Comprehensive PRO Inclusive Outcome Measures Moving towards the future, we are beginning to see a move towards the unification of data through metaanalysis and combination of outcomes. Whilst PROs form one arm of assessing clinical outcomes, the relative cost and impact of providing this health intervention, as well as the measurable effects on disease measures need to be combined. The ICHOM is an institution aiming to provide validated PROs and integrate these with physiological, and health care-system relevant measures to provide implementable trial data (Porter, Larsson, & Lee, 2016).

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THE FUTURE OF PRO: CHALLENGES AND HOPES In a world where everything is becoming virtual, we have to use new tools for patient-centred healthcare. Science is rapidly evolving and patients must have a central role in directing their care and also pushing the frontiers of their care. Information technology is a powerful tool to achieve this and industry and academia should work alongside patients if they want to build patient-centred health care systems. Is there a future where instead of waiting months for appointments, an electronic platform integrated into the electronic health record can provide real time PROs that prioritise patient needs and simultaneously avoid unnecessary consultations? Despite progress, challenges remain for widespread implementation of PRO collection platforms. There is a lack of consensus on which PRO is best for many conditions, but there is hope. Groups such as PROMlS provide free, concise, valid PROs, and the International Consortium for Health Outcomes Measurement (ICHOM) are encouraging coalescence around a single set of measures for particular diagnoses. If PROs are to be used as a quality measure for reimbursement programs, health care professionals must determine how to risk-adjust for clinical and sociodemographic patient characteristics. Data interoperability will also be essential. Finally, as PRO collection becomes more widespread, we must be cautious of overwhelming patients with constant surveys, factoring in convenience and privacy.

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CONCLUSIONS: PATIENT REPORTED OUTCOMES AS A SHARED LANGUAGE IN HEALTH LITERACY Modern health care needs to identify parameters for high-quality care. Quality improvement is the key to advancing health care, and our assessment of quality must shift from disease-centred to patientcentred outcomes. PROs represent an evolving shared language between the care-receiver, care-giver and health researcher. The consequence of this evolution is a new form of health literacy bridging the gap between an individual patient, their personal values and the clinician’s knowledge of physiologically and objectively perceivable outcomes. This shared language can be derived from a unified source which factors in patient specific values as they relate to physiological data and information on the cost and implementation of health care resources. Patient reported outcomes are linked to health literacy by elevating the patient experience to a quantifiable, measurable format, integrated into the scientific method rather than simply applied ad hoc at the bed side. Clinicians and patients sharing PRO information can discuss patient choices as supported by rigorous and factual information. Health professionals would benefit from PRO as tools to monitor patients, better understand their symptoms, and determine practical action to improve patient health. PRO integration will put data behind the patient’s ability to guide their own care; the data having started in the language the patient speaks. The surgical community has a golden opportunity to take the lead in bringing PRO data to the bedside and integrating it into practice. There is no area of clinical care where we ask patients to participate in such significant risk-based decisions, and at present we often only communicate in a language of percentages of risks and mortality. Most people want to know the impact of morbidity relating to an intervention, not just the rate at which it happens. Achieving this goal is only feasible if we start to understand what the patient’s experience of care is. Utilising PROs can convert treatment impact on subjective experiences into data which when presented in a utilisable format can be used to create care objectives towards which both the surgeon and their patient can travel. Time has come to carry patient-centred outcomes from research into decision-making and daily care plans. PROs are the source of the lexicon we need to build patient-clinician relationships that minimise the negative effects of treatment, optimise quality of life, and align medical decisions with patient expectations.

REFERENCES

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Bergner, M., Bobbitt, R. A., Carter, W. B., & Gilson, B. S. (1981). The Sickness Impact Profile: Development and final revision of a health status measure. Medical Care, 19(8), 787–805. doi:10.1097/00005650198108000-00001 PMID:7278416 Black, N., Varaganum, M., & Hutchings, A. (2014). Relationship between patient reported experience (PREMs) and patient reported outcomes (PROMs) in elective surgery. BMJ Quality & Safety. Brazier, J., Usherwood, T., Harper, R., & Thomas, K. (1998). Deriving a preference-based single index from the UK SF-36 Health Survey. Journal of Clinical Epidemiology, 51(11), 1115–1128. doi:10.1016/ S0895-4356(98)00103-6 PMID:9817129 Calvert, M., Blazeby, J., Altman, D. G., Revicki, D. A., Moher, D., Brundage, M. D., & CONSORT PRO Group. (2013). Reporting of patient-reported outcomes in randomized trials: The CONSORT PRO extension. Journal of the American Medical Association, 309(8), 814–822. doi:10.1001/jama.2013.879 PMID:23443445 Cella, D., Yount, S., Rothrock, N., Gershon, R., Cook, K., Reeve, B., ... Rose, M. (2007). The PatientReported Outcomes Measurement Information System (PROMIS): Progress of an NIH Roadmap cooperative group during its first two years. Medical Care, 45(5Suppl 1), S3–s11. doi:10.1097/01. mlr.0000258615.42478.55 PMID:17443116 Contopoulos-Ioannidis, D. G., Karvouni, A., Kouri, I., & Ioannidis, J. P. A. (2009). Reporting and interpretation of SF-36 outcomes in randomised trials: Systematic review. BMJ (Clinical Research Ed.), 338(jan12 1), a3006. doi:10.1136/bmj.a3006 PMID:19139138 Cronbach, L. J., & Meehl, P. E. (1955). Construct validity in psychological tests. Psychological Bulletin, 52(4), 281–302. doi:10.1037/h0040957 PMID:13245896 de Vet, H. C., Foumani, M., Scholten, M. A., Jacobs, W. C., Stiggelbout, A. M., Knol, D. L., & Peul, W. C. (2015). Minimally important change values of a measurement instrument depend more on baseline values than on the type of intervention. Journal of Clinical Epidemiology, 68(5), 518–524. doi:10.1016/j. jclinepi.2014.07.008 PMID:25544741 Den Oudsten, B. L., Zijlstra, W. P., & De Vries, J. (2013). The minimal clinical important difference in the World Health Organization Quality of Life instrument--100. Supportive Care in Cancer, 21(5), 1295–1301. doi:10.100700520-012-1664-8 PMID:23203652

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Donovan, J. L., Hamdy, F. C., Lane, J. A., Mason, M., Metcalfe, C., Walsh, E., ... Neal, D. E. (2016). Patient-Reported Outcomes after Monitoring, Surgery, or Radiotherapy for Prostate Cancer. The New England Journal of Medicine, 375(15), 1425–1437. doi:10.1056/NEJMoa1606221 PMID:27626365 EuroQol-Group. (1990). EuroQol--a new facility for the measurement of health-related quality of life. Health Policy (Amsterdam), 16(3), 199–208. doi:10.1016/0168-8510(90)90421-9 Furlong, W., Feeny, D., Torrance, G., & Barr, R. T. (2001). The Health Utilities Index (HUI) System for Assessing Health-Related Quality of Life in Clinical Studies. Academic Press. Higgins, J. P. T., & Green, S. (2011). Cochrane handbook for systematic reviews of interventions Version 5.1.0. Chichester, UK: Wiley-Blackwell.

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Holmes, M. M., Lewith, G., Newell, D., Field, J., & Bishop, F. L. (2017). The impact of patient-reported outcome measures in clinical practice for pain: A systematic review. Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation, 26(2), 245–257. doi:10.100711136-016-1449-5 PMID:27815820 Johnston, B. C., Patrick, D. L., Busse, J. W., Schünemann, H. J., Agarwal, A., & Guyatt, G. H. (2013). Patient-reported outcomes in meta-analyses – Part 1: Assessing risk of bias and combining outcomes. Health and Quality of Life Outcomes, 11(1), 109–109. doi:10.1186/1477-7525-11-109 PMID:23815754 Khanna, D., Furst, D. E., Wong, W. K., Tsevat, J., Clements, P. J., Park, G. S., ... Hays, R. D. (2007). Reliability, validity, and minimally important differences of the SF-6D in systemic sclerosis. Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation, 16(6), 1083–1092. doi:10.100711136-007-9207-3 PMID:17404896 King, M. T., Winters, Z. E., Olivotto, I. A., Spillane, A. J., Chua, B. H., Saunders, C., ... Rutherford, C. (2017). Patient-reported outcomes in ductal carcinoma in situ: A systematic review. European Journal of Cancer (Oxford, England), 71, 95–108. doi:10.1016/j.ejca.2016.09.035 PMID:27987454 Labrie, J., Berghmans, B. L. C. M., Fischer, K., Milani, A. L., van der Wijk, I., Smalbraak, D. J. C., ... van der Vaart, C. H. (2013). Surgery versus Physiotherapy for Stress Urinary Incontinence. The New England Journal of Medicine, 369(12), 1124–1133. doi:10.1056/NEJMoa1210627 PMID:24047061 Lindley, C. M., Hirsch, J. D., O’Neill, C. V., Transau, M. C., Gilbert, C. S., & Osterhaus, J. T. (1992). Quality of life consequences of chemotherapy-induced emesis. Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation, 1(5), 331–340. doi:10.1007/ BF00434947 PMID:1299465 Lohr, K. N., Aaronson, N. K., Alonso, J., Burnam, M. A., Patrick, D. L., Perrin, E. B., & Roberts, J. S. (1996). Evaluating quality-of-life and health status instruments: Development of scientific review criteria. Clinical Therapeutics, 18(5), 979–992. doi:10.1016/S0149-2918(96)80054-3 PMID:8930436 Martini, C. J., & McDowell, I. (1976). Health status: Patient and physician judgments. Health Services Research, 11(4), 508–515. PMID:1025054 Mathus-Vliegen, E. M., & de Wit, L. T. (2007). Health-related quality of life after gastric banding. British Journal of Surgery, 94(4), 457–465. doi:10.1002/bjs.5607 PMID:17310505

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McLeod, L. D., Coon, C. D., Martin, S. A., Fehnel, S. E., & Hays, R. D. (2011). Interpreting patientreported outcome results: US FDA guidance and emerging methods. Expert Review of Pharmacoeconomics & Outcomes Research, 11(2), 163–169. doi:10.1586/erp.11.12 PMID:21476818 Mokkink, L. B., Terwee, C. B., Patrick, D. L., Alonso, J., Stratford, P. W., Knol, D. L., ... de Vet, H. C. (2010). The COSMIN checklist for assessing the methodological quality of studies on measurement properties of health status measurement instruments: An international Delphi study. Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation, 19(4), 539–549. doi:10.100711136-010-9606-8 PMID:20169472

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Nanda, U., McLendon, P. M., Andresen, E. M., & Armbrecht, E. (2003). The SIP68: An abbreviated sickness impact profile for disability outcomes research. Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation, 12(5), 583–595. doi:10.1023/A:1025036325886 PMID:13677503 Nelson, E. C., Eftimovska, E., Lind, C., Hager, A., Wasson, J. H., & Lindblad, S. (2015). Patient reported outcome measures in practice. BMJ: British Medical Journal, 350. NICE. (2013). Guide to the methods of technology appraisal 2013 (PMG9). Retrieved from nice.org. uk/process/pmg9 NICE. (2015). NICE Clinical Knowledge Summary: Depression. Retrieved from https://cks.nice.org. uk/depression Olsen, M. F., Bjerre, E., Hansen, M. D., Hilden, J., Landler, N. E., Tendal, B., & Hrobjartsson, A. (2017). Pain relief that matters to patients: Systematic review of empirical studies assessing the minimum clinically important difference in acute pain. BMC Medicine, 15(1), 35. doi:10.118612916-016-0775-3 PMID:28215182 Patrick, D. L., Burke, L. B., Gwaltney, C. J., Leidy, N. K., Martin, M. L., Molsen, E., & Ring, L. (2011). Content validity--establishing and reporting the evidence in newly developed patient-reported outcomes (PRO) instruments for medical product evaluation: ISPOR PRO Good Research Practices Task Force report: part 2--assessing respondent understanding. Value in Health, 14(8), 978–988. doi:10.1016/j. jval.2011.06.013 PMID:22152166 Pickard, A. S., Neary, M. P., & Cella, D. (2007). Estimation of minimally important differences in EQ-5D utility and VAS scores in cancer. Health and Quality of Life Outcomes, 5(1), 70–70. doi:10.1186/14777525-5-70 PMID:18154669 Porter, M. E., Larsson, S., & Lee, T. H. (2016). Standardizing Patient Outcomes Measurement. The New England Journal of Medicine, 374(6), 504–506. doi:10.1056/NEJMp1511701 PMID:26863351 Revicki, D., Hays, R. D., Cella, D., & Sloan, J. (2008). Recommended methods for determining responsiveness and minimally important differences for patient-reported outcomes. Journal of Clinical Epidemiology, 61(2), 102–109. doi:10.1016/j.jclinepi.2007.03.012 PMID:18177782

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Revicki, D., Hays, R. D., Cella, D., & Sloan, J. (2008). Recommended methods for determining responsiveness and minimally important differences for patient-reported outcomes. Journal of Clinical Epidemiology, 61(2), 102–109. doi:10.1016/j.jclinepi.2007.03.012 PMID:18177782 Samsa, G., Edelman, D., Rothman, M. L., Williams, G. R., Lipscomb, J., & Matchar, D. (1999). Determining clinically important differences in health status measures: A general approach with illustration to the Health Utilities Index Mark II. PharmacoEconomics, 15(2), 141–155. doi:10.2165/00019053199915020-00003 PMID:10351188 Stott, D. J., Rodondi, N., Kearney, P. M., Ford, I., Westendorp, R. G., Mooijaart, S. P., ... Bauer, D. C. (2017). Thyroid hormone therapy for older adults with subclinical hypothyroidism. The New England Journal of Medicine, 376(26), 2534–2544. doi:10.1056/NEJMoa1603825

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Tarlov, A. R., Ware, J. E. Jr, Greenfield, S., Nelson, E. C., Perrin, E., & Zubkoff, M. (1989). The Medical Outcomes Study. An application of methods for monitoring the results of medical care. Journal of the American Medical Association, 262(7), 925–930. doi:10.1001/jama.1989.03430070073033 PMID:2754793 Terwee, C. B., Bot, S. D. M., de Boer, M. R., van der Windt, D. A. W. M., Knol, D. L., Dekker, J., ... de Vet, H. C. W. (2007). Quality criteria were proposed for measurement properties of health status questionnaires. Journal of Clinical Epidemiology, 60(1), 34–42. doi:10.1016/j.jclinepi.2006.03.012 PMID:17161752 Valderas, J. M., Ferrer, M., Mendivil, J., Garin, O., Rajmil, L., Herdman, M., & Alonso, J. (2008). Development of EMPRO: A tool for the standardized assessment of patient-reported outcome measures. Value in Health, 11(4), 700–708. doi:10.1111/j.1524-4733.2007.00309.x PMID:18194398 Ware, J. E., & Sherbourne, C. D. (1992). The MOS 36-Item Short-Form Health Survey (SF-36): I. Conceptual Framework and Item Selection. Medical Care, 30(6), 473–483. doi:10.1097/00005650199206000-00002 PMID:1593914 WHOQOL-Group. (1998a). Development of the World Health Organization WHOQOL-BREF quality of life assessment. The WHOQOL Group. Psychological Medicine, 28(3), 551–558. doi:10.1017/ S0033291798006667 PMID:9626712 WHOQOL-Group. (1998b). The World Health Organization quality of life assessment (WHOQOL): Development and general psychometric properties1. Social Science & Medicine, 46(12), 1569–1585. doi:10.1016/S0277-9536(98)00009-4 PMID:9672396

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This research was previously published in Optimizing Health Literacy for Improved Clinical Practices; pages 109-123, copyright year 2018 by Medical Information Science Reference (an imprint of IGI Global).

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Chapter 13

Health-Related Communication and Rare Diseases: A Passport for the Patient Journey Michaela Liuccio https://orcid.org/0000-0002-6091-2285 Sapienza University Rome, Italy

ABSTRACT Rare diseases are often characterized as diseases with low prevalence in population that stem from genetic disorders or environment conditions. As a result of its low prevalence and lack of knowledge of its causes, symptoms, and/or treatment, patients’ access to healthcare, and their quality of life may be affected. A key challenge is also the physician-patient interaction that differs from traditional medical care settings by demanding physicians’ experience in dealing, for example, with psychological problems associated with the diagnosis process. Information and Communication Technologies can facilitate the interaction between the sources of information and patients, overcoming geographical distances. This chapter discusses the role of Information and Communication to extract health data in rare diseases and reinforce physician-patient interactions. It argues that Information and Communication are crucial to meet patients’ needs, drivers, and decision-making that tend to occur during the patient’s journey (pre-diagnosis, diagnosis, and post-diagnosis).

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INTRODUCTION Rare diseases impact negatively upon on patients’ access to high-quality healthcare and both patients and care-givers’ quality of life (Hesselgrave, 2003; Huyard, 2009; Pasculli, Resta, Guastamacchia, Suppressa, Sabbà, 2004; Schieppati, Henter, Daina, & Aperia, 2008). Part of this impact may be owing to the uncertainty often associated to this kind of diseases and, subsequently, have an impact on trust in physicians and healthcare systems.

DOI: 10.4018/978-1-6684-2414-8.ch013

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 Health-Related Communication and Rare Diseases

Lack of certainty is, indeed, one of the greatest challenges that is likely to predominate in disease diagnosis and treatment. Babrow, Kasch and Ford (1998) point out that uncertainty can result from complex situations (e.g. multicausal or contingent pathways to outcomes), properties of information (e.g. clarity, completeness, volume, or consistency), probabilistic thinking (e.g. belief in a single probability or a range of probabilities), the structure of information (e.g. how or whether information is integrated with other information), and lay epistemology (e.g. individual beliefs about the nature of knowledge). In health-related communication, investigating the way uncertainty is managed by patients (Brashers, Goldsmith, & Hsieh, 2002; Martin, Stone, Scott, & Brashers, 2010) and their social network members (Donovan-Kicken & Bute, 2008) has been a continuing concern within socio-medical context. Patients and caregivers usually rely on community social support to help with information seeking (Brashers, Neidig, & Goldsmith, 2004; Cline & Haynes, 2001), coping skills and disease management (Patsos, 2001), reinforcing perceived relational stability and changes in the patient’s perspective on the disease impact (Doyle, 2015). Provider-patient relationships can be also fundamental to aid in uncertainty management; however, they can also exacerbate certain moments of uncertainty when dealing with the dualism of a “credible authority” and information scarcity. In fact, Mishel (1988) draws our attention to the fact that a “credible authority” (i.e, trust and confidence in health care providers) are important predictors of uncertainty. If, on the one hand, they can be a valuable source of information or advice and facilitate decision-making, on the other hand, they may express uncertainty towards incidence (i.e. number of newly diagnosed cases) of rare diseases (Brashers, Hsieh, Neidig, & Reynolds, 2006; Gordon, Joos, & Byrne, 2000). In health provider-patient interactions, mirroring uncertainty (Clayton, Dudley, & Musters, 2008) can also occur, having an impact on patient’s satisfaction and anxiety (Blanch, Hall, Roter, & Frankel, 2009). It can be manifested through the following ways: (a) Question asking (Eggly et al., 2006); and (b) Information sharing (Nakash, Dargouth, Oddo, Gao, & Alegría, 2009). Given that this process may be amplified with the use of Information and Communication Technologies (Lewis, Gray, Freres, & Hornik, 2009) and affect patients’ attitudes (Parrott, 2009) and health (Pecchioni, Thompson, & Anderson, 2006), understanding the role of communication among different stakeholders (i.e. patients, caregivers, physicians, policy-makers) in rare diseases is of utmost importance. The aim of this chapter is to discuss the role of information and communication to extract health data in rare diseases, and the implications in the patient’s journey (pre-diagnosis, diagnosis and post-diagnosis).

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HEALTH-RELATED COMMUNICATION AND RARE DISEASES IN THE DIGITAL AGE Although a precise definition of health-related communication is lacking, it is undeniable the importance of the transdisciplinary involving both health and social sciences (Lambert, & McKevitt, 2002; Schiavo, 2007). The Centers for Disease Control and Prevention (2019) defines it as: The study and use of Communication strategies to inform and influence individual decisions that enhance health. The interpersonal and intrapersonal interactions (Ruesch, 1951) may involve different channels (e.g. letters, newspapers, mass media, mobile media, VR, games) and health stakeholders (e.g. physician, patient, 219

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 Health-Related Communication and Rare Diseases

caregivers). Alongside the advances in health with the emergence of ehealth (Eysenbach, 2001), digital and smart health (Kostkova, 2015; Solanas, et al., 2014), mhealth (Fiordelli, Diviani, & Schulz, 2013), VR or Gamified Health (Johnson, et al., 2016; Riva, 2002) and communication have also evolved from the linear source-message-receiver process (Lasswell, Lerner & Pool, 1952; Shannon & Weaver, 1949) to an increasingly multimodal, interactive (Robinson, & Stivers, 2001), peer-to-peer and complex one. Patient empowerment (Aujoulat, d’Hoore, & Deccache, 2007; Holmström & Röing, 2010; Rifkin, 2006) involves a demand for information and both participation in active (and interactive) health management and shared responsibilities with health stakeholders. In fact, such empowerment is considered very important to those cases in which not only compliance with pharmacological treatment is required, but also a radical change in lifestyle (Rifkin, 2006). As a result, it can impact on advocacy for health, through the combination of individual and social actions aimed to support policies for a particular health goal or program (Maibach, & Holtgrave, 1995). In addition, in the health context, the role of communication is closely connected to trust (Hou, & Shim, 2010), i.e. trust is an important component of the relationship between people and health information, and between people and healthcare professionals; it may vary because the same health information/communication would be perceived differently; and this variance may affect health communication outcomes. Media advocacy has been of particularly value to divulgate the patients’ needs and unite different health stakeholders (e.g. patients, politicians, public opinion, those who organize and provide health services- physicians, nurses, caregivers, professional associations, pharmaceutical industry) (Walker, 2013; Wallack, Dorfman, Jenigan, & Themba-Nixon, 1993). In the individual-health-society relationships, it is worth noting that the cultural “building” power of the media can be centered on the following levels (Liuccio, & Giorgino, 2019): • • •

Media-action: Production of cultural products, often stereotyped that may have an impact on social effects; Mediation: Bridge the gap between expert knowledge, medical-scientific, and undifferentiated audiences; Disintermediation process: Diminish the power of media culture, thanks to the spread of new media.

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In a digital age, patient-citizen-consumers have access to many sources of information (Adams, 2011; Biehl, 2016) and tend to be less faithful to the uniqueness of medical assistance and adherence to paternalism in physician-patient relationships (McKinstry, 1992). Through the use of digital platforms, they can (Lupton, & Jutel, 2015; Swan, 2009): a. b. c. d.

Plan, decide, interact and monitor their health; Search and choose their own physician; Choose freely between public and private services; and Demonstrate advocacy skills and strategically affect health policies, especially through patient’s associations.

In all, patients are the decision-makers and the co-producers of their own health (Bopp, 2000; Fotaki, 2011). Amongst the possible actions that patients can perform with the use of digital media, information search is the most influential on patients’ decision-making and reliability of the source, being trust a 220

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 Health-Related Communication and Rare Diseases

constant concern (Impicciatore, Pandolfini, Casella, & Bonati, 1997). In addition, mobile technologies have been used over the years to get georeferenced information on patients’ health, diagnosis and selfcare; surveil and self-monitor diseases, and send short messages towards health (Kahn, Yang, & Khan, 2010). Mobile media is recognized as an important source of health information, but it is unclear whether people from different social groups use mobile media to seek health information. Some studies have shown that used sources of health information may vary by ethnicity (O’Malley, Kerner, & Johnson, 1999), race (Nicholson, Grason, & Powe, 2003) and socioeconomic status (Hesse et al., 2005). Relatively few studies (e.g. Budych, Helms, & Schultz, 2012; Coulson, Buchanan, & Aubeeluck, 2007; Glenn, 2015; Lasker, Sogolow, & Sharim, 2005; Patsos, 2011) have deeply considered the role-set of communication in rare diseases (Liuccio, Belotti, Comune, Zambito, & Schulz, 2015). Most of the studies are focused on the interpersonal communication between patient and care givers (e.g. Budych, Helms, & Schultz, 2012; Bensing, 1991), and on psycho-social support (e.g. Coulson, Buchanan, & Aubeeluck, 2007; Kaplan, Cassel, & Gore, 1977). Furthermore, there are studies on the information patients extract from the media (new and mass media) (Rekatsinas, et al., 2015), but no adequate attention has been paid to patients’ health information seeking behaviors. The term HISB (Health Information Seeking Behaviors) (Lambert, & Loiselle, 2007) is used to refer to the type and amount of information sources consulted and, subsequently, one’s decision-making and actions performed. When applied to rare diseases, HISB are likely to be of interest to health professionals in that informational interventions are tailored to individuals’ needs and preferences (Liuccio, et al., 2015).It would be, therefore, important to promote studies on patients’ health information seeking behaviors, information reliability and divulgation channels, and non-alarmist data that are easy to decode regarding rare diseases. Relative to the source of medication information and other disease information (Web-based information, pharmacists, physicians), patients diagnosed with rare diseases often perceive physicians and Web-based information as credible sources and information mediators concerning such topics as side effects and drug effectiveness (Liuccio et al., 2015). Web-based information can be beneficial for patients with rare diseases by: •

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•

• •

Connecting with other patients diagnosed with the same/similar diseases: This connection can help patients to cope with their disease, obtaining knowledge and support from who share the same symptoms and are challenged with similar obstacles/difficulties on a daily basis (Doyle, 2015); Helping with screening prevention, diagnosis and treatment of the disease: Web-based information enables early identification, personalized treatment, and health management (Dwyer, Quinton, Morin, & Pitteloud, 2014; Kowalski, Kahana, Kuhr, Ansmann, & Pfaff, 2014; Schumacher, et al., 2014); Overpassing the limitations of the patient-physician communication: Patients may be more open to express their concerns in web communities rather than with their physician (HiltonKamm, Sklansky, Chang, 2014); Searching information and reaching online communities: Web-based interventions and online communities may be helpful to decode clinical information, explore new therapeutic modalities and provide new insights about certain disease relevant for health providers-patients interactions. These are relevant to ensure patients’ empowerment (Aymé, Kole & Groff, 2008);

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•

Ensuring the effectiveness of patient advocacy groups for rare diseases and raise public awareness in general (Morgan et al. 2014). When individuals access accurate and reliable information, they can make informed decisions (Liuccio et al. 2015).

Regarding patients’ illnesses and health needs, three elements play a determinant role: (a) the individual’s illness; (b) medical entities (e.g. physicians, nurses, health professionals…); and (c) society as a whole (with collective symbolic representations, strategies or political visions, economic maneuvers). A disease pathology is dependent on the individual, cultural and subjective perspective or experience of a physical and mental discomfort. A disease also refers to how the social system represents and interprets a disease, an experience of illness and, therefore, rights, duties and insured practices associated to it (disease) (Giarelli, & Venneri, 2009). In the specific case of rare diseases, the patients’ perception of illness severity also varies with their attitude towards the disease and others’ recognition (socio-cultural aspects) (Augè, & Herzlich, 1986; Liuccio, 2018), and the media plays in that way an essential role.

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PATIENT-PHYSICIAN INTERACTIONS In Patient-Physician Interactions, communication is mainly affected by the role of behavior of both the patient and health care providers. Previous studies on patients with rare diseases (Aymé, Kole, & Groff, 2008; Bronstein, & Kakki, 2016; Mavris & Cam, 2012) have shown that patients often become experts in their own diseases and health providers have to recognize the active role of the patient as an informed, engaged and interactive partner in the therapeutic process. This is a change in mind-set of the traditional healthcare systems. Physicians do not have always enough knowledge and experience in all rare diseases and, therefore, patients are faced with deep uncertainty. In particular, most of the treatments are considered experimental, hence the concern about their safety and effectiveness (Aartsma-Rus et al., 2011; Abrahamyan, et al., 2016). Thus, the information passed on by different health professionals may be inconsistent or controversial, and the patient is confronted with conflicting opinions and different treatment options from the top experts involved. Ambiguity, variety and unpredictability of the symptoms are then major problems. Nevertheless, patients’ experience would, probably, get better if health professionals were capable of meeting their moral expectations more often, especially in terms of diagnosis disclosure and information (Liuccio et al. 2015). Patient-Physician interactions encompass two dimensions of communication: content (sometimes referred to as task/instrumental) and affective/relational. Beach, Keruly and Moore (2006) advocate that patients want to be regarded as individuals by health stakeholders and not merely as patients. For that, positive affect from care providers and encouragement of question-asking are also crucial (Ong, Visser, Lammes, & De Haes, 2000; Pieterse, Van Dulmen, Beemer, Bensing, & Ausems, 2007). For many years, physician-patient relationships were hierarchical, in which physicians were the entities who had all the knowledge and transmitted it to a ‘passive’ patient. These interactions have been changed within a socio-cultural setting and living condition and the patient role has also involved in a much more sympathetic and emphatic approach (Greenfield, Kaplan, & Ware, 1985; Warne, & McAndrew, 2007). The current advancements on the digital age tend to lead to a dematerialization of the physical contact between physician and patients and representation of these interactions through images, videos and simulacra. The Parsonian’s role of a passive agent relative to health and self-care is likely to have evolved 222

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to an active agent responsible for their health (Armstrong, 2014), who understand his/her own pathology and is able to exchange information with the physician and negotiate treatments and drug intake. In the view of the interrelationship between illness and social life, Parsons (1996) highlights that the sickness condition and its severity is more than a subjective dimension, but a socio-cultural one. The role of the patient is described as temporary and closely related to the condition of the disease, as an alternative to the normality of the roles played in life based on cultural and social variables. Living and coping with a disease is also part of one’s identity and culture context. Indeed, individuals live the condition of illness as a modification of physical, social and moral harmony. In many cases, they come to think that the change in their body, due to the pathology, has irremediably changed their identity, and it has developed a post-diagnosis identity. In this regard, Frank (1998) has identified three different types of disease “storytelling”: the restitution story, the chaos story and the quest story. These are characterized as follows: •

•

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•

Restitution story: The restitution story is the popular disease storytelling in Western cultures, especially in North America, Australia and Great Britain. It is characterized by its optimistic approach that emphasizes the individual’s ability to control the disease. The pathology is an enemy to be fought and the biomedicine is the weapon of defense against the enemy. Chaos story: The Chaos story represents a completely opposite storytelling that emphasizes the physical individual decline, the lack of effectiveness of the treatments and all the consequent economic and social problems that involve patients and their family. Quest story: The quest story refers to illness as a condition of ‘research’, a state in which something could be learned. This is a more optimistic view focused on how the disease and the changes that it necessarily entails in individuals’ lives. There is an opportunity to reflect on one’s own existence and also make choices that go in different directions, perhaps thanks to the rediscovery of neglected values.

In recent years, medical testing has been regarded as a providential solution to assist the birth and the evolution of a pathology. However, medical testing may increase individuals’ waiting state for a test result, marked by anxiety and fear (Uhlenbusch et al., 2019). In addition, individual health living has been defined as a condition of potential ill (Lupton, 2012), leading to certain obligation to screening and testing in the medical activities. Medicalization gave rise to “patients-in-waiting” (Annandale, 2014; Timmermans, & Buschbinder, 2010) for a test result or a piece of information relative to a certain pathology that can affect their life. Alongside medicalization, current advances in biotechnology paved the way to a “techno-scientific” patients’ identity and risk management based on technological screening (Sulik, 2009; Waring, 2009). As a result, some individuals may discover their pre-pathological identity even in the complete absence of symptoms (Sulik, 2009). When coping with disease and its impact on daily basis, three groups of social actors are often involved: people affected by the disease; the doctors with whom patients interact with; and the patients’ family members or caregivers (Liuccio et al., 2015). In the light of the progressive increase in chronic and chronic-degenerative diseases, the “normalization” of a pathology must be added to the cultural construction of the contemporary illness. The term “normalization” is used to refer to the patients and caregivers’ attitudes and actions in daily life, regardless of the disease and inherent changes in identity and social relationships. Compliance becomes, therefore, indispensable – i.e. the patients’ adherence of such behaviors as taking drugs, self-care and change lifestyles, following the physicians’ orders. In 223

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 Health-Related Communication and Rare Diseases

case of non-compliance, patients and caregivers’ attitudes are regarded as a sign of uncooperative personality trait from the medical community, being more difficult to accept it when dealing with chronic diseases (Giarelli, & Venneri, 2009). Bury (1982) identifies the following features that are associated to these diseases: • • •

Indeterminacy: Difficulty in identifying the beginning of the pathology and diagnosis, in comparison with an acute pathology; Unpredictability: The chronic disease has often a fluctuating and unpredictable trend; Uncertainty: Individuals are faced with the prospect of a cohabitation with the pathology. Whereas acute pathology is focused on survival, the focus of chronic diseases lies in living with the pathology and rethinking its own existence.

In the same vein, the changes of the “physician-patient relationship”, the types of “disease storytelling”, the “medicalization” and the “normalization” affect intensely in rare diseases (Liuccio, 2018). In terms of the psycho-social support in rare diseases, patients and caregivers tend to be negatively affected by the scarcity of information and lack of access to a social and psychological support (Anderson, Elliot, & Zurynski, 2013; Pati, 2010; Pelentsov, Laws, & Esterman, 2015). Access to medical services is frequently described as a tedious and a tangled process, and for the family, the behavioral symptoms are the most difficult to manage because of their high impact on daily life (Anderson, Elliott, & Zurynski 2013; Griffith et al. 2011). Nowadays, self-care extends the traditional health systems, aided by family and other caregivers and patient associations. These latter may offer an important contribution, providing their members the most accurate and reliable information on the disease and possible treatments while providing relevant social, legal and financial services. In view of all that has been mentioned relative to patient-physician interactions in rare diseases, one may suppose that a set of networks configure the context in which patients weave social relationships and have an effect on individual’s health and access to healthcare resources. These networks can be of three types (Giarelli, & Venneri, 2009): • •

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•

Primary/Informal networks: These networks comprise face-to-face relationships, mainly referring to natural ties (family or friends) that also constitute health protectives systems; Secondary/informal networks: These networks rely on self-mutual-aid groups, such as voluntary or patient associations. Secondary/formal networks: These networks are represented by the institutions responsible for care and by the professionals involved in the provision of services (hospitals, health companies, doctors, nurses etc.).

Having discussed the role of communication to extract health data in rare disease and in patientphysician interactions, the next section addresses the implications of communication in the patient’s journey divided into pre-diagnosis and post diagnosis.

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 Health-Related Communication and Rare Diseases

IMPLICATIONS OF COMMUNICATION IN THE PATIENT’S JOURNEY The patient’s journey encompasses a certain level of complexity in which the patient responds to a disease over time (Nanton, Docherty, Meystre, & Dale, 2009; Trebble, et al., 2010), being influenced by the availability of information. These responses to the disease can be not only physical, but also cognitive, emotional and social. Two major steps can be found in a patient journey. These are: a) the pre-diagnosis stage; and b) the post-diagnosis stage. It is, therefore, necessary to know in depth the experience of the patients before and during the illness: the life before the illness, the onset of symptoms, the progression of the disease, the repercussions on the family and on the job. Each stage is accompanied by specific health, pharmacological and psychological services. From the author’s perspective (Liuccio, 2018), patients with rare diseases have a two-step journey: 1. A journey before diagnosis; and 2. Post-diagnosis journey.

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1. A journey before diagnosis: In the first journey, the family has the main role. Patients, once labeled as “rare patients”, they may be ready to leave the family nest and move around in search of relationships that can help to take on and solve their health problems. The family plays a fundamental role because it is the communicative mediator with the outside world, and is the only source, emotional and cognitive, to face the physical and psychological difficulties. 2. Post-diagnosis journey: In the second journey, or post-diagnosis, the physician, social networks, and reference communities become the protagonists. It is known that family members of patients play a significant role in patients’ socialization and practical and emotional support. They are often mediators between the patient and physicians and health professionals, transmitting and validating information and sources. The focus on patients with rare diseases confirms this aspect, especially for the complex supporting role that the family must have in the long and difficult phase of identification of a diagnosis. As shown in these journeys, the communicative actors involved are family-doctors-network (off-line and online) and they have different roles in the two steps. Family is at the center of the informal health care ecosystem that includes self-care and family care (Giarelli & Venneri, 2009). Indeed, domestic care management (home care) is basically entrusted to the family that provides care work through three components (Bulmer, 1987): 1. Materially caring, or helping the patient in their daily activities; 2. Psychological and emotional support through advice and comfort; and 3. Financial support, aimed at the patients’ physical and mental well-being. Family care is often based on the work of a caregiver who, in most cases, is played by a woman. This is obviously an unpaid informal work, which is, precisely for these reasons, often called “work of love” (Graham, 1991). To support the family, there is a community of care that consists in informal and formal secondary networks. The informal ones are made up of services, organizations, associations and groups of the third sector, based on a non-profit logic; those of a formal nature refer to public sector or private sector services, based, however, on the logic of profit. The activation of formal networks is usually mediated by a health professional (the family doctor, a nurse, etc.), who acts as a gatekeeper for access to the system of available care and services (Kilbride & Joffe, 2018). The informal secondary networks mainly include three types: service volunteering; advocacy organizations; and self-help groups. When compared to formal networks, informal networks can intervene in 225

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 Health-Related Communication and Rare Diseases

three different ways: substitute because their action is a substitute for the inaction of formal networks; complementarity because they support additional services compared to those of the formal network services; and competition because they provide alternative services in competition with the formal sector. When facing with long-term care needs, most appropriate responses necessarily lie in primary care in collaboration with family care and the informal sector of community care. Family also plays a fundamental role in helping to deal with the pathology and mediate the relationship in the patient-physiciancare structure. The doctor-patient relationship still is, with reference to rare diseases, critical for several reasons: (a) the physician often knows little about the rare pathology; (b) the physician underestimates the patient’s symptoms; and (c) the physician hardly takes care of the patient continuously over time. All of this obviously affects the trust agreement and creates communication difficulties and a low compliance. Physicians do not always have enough specific knowledge and experience, and therefore patients are faced with deep uncertainties. Besides that, most treatments are considered experimental, so they often generate concern for their safety and effectiveness. In general, information transmitted by different health professionals can be inconsistent or controversial and the patient is confronted with conflicting opinions and conflicting treatment options. This picture is even more critical if we consider that, in a modern society, part of the intimacy of the personal relationship between doctor and patient had been lost, which was instead constant and customary in pre-modern societies. In the Information and Communication society, the physician-patient relationship has evolved from the consensual model to the evolutionary model, passing through the conflict model. In the evolutionary model, mediation has become relational (Liuccio et al., 2015), since the analysis of the body as an object text left the place to the study of the cognitive, affective and value framework of the person. Such elements as empathy (Ardigò, 1997), attention to the “determinants” of health and the “interpersonal care” have become more important, although these aspects do not always find concrete and adequate value. In specific, patients often find it difficult to communicate their daily disease-difficulties to social relations, internal and external to the family or labor context. From the physicians’ perspective, these elements enable to understand the impact of the patient’s disease syndrome and facilitate their rehabilitation. On the contemporary physician-patient relationship impacts also the medical dominance crisis. The medical dominance crisis, more generally, must also be read through the “de-professionalization”, i.e. the decline of the monopoly of medical knowledge due above all to the entry of the media, new media and of the technology applied to diagnostics. In particular, it should be emphasized that the patient is not only a potential good patient, who is “passive” and welcoming with respect to the recognition of the physician’s domain (i.e. experience, knowledge), but he/she is also a consumerist patient, that uses the material and immaterial health products on the market according to its economic-social and cultural capital. The “control” exercised by the patient-consumer necessarily forces physicians to be more cautious in making decisions, undermining the authority. The democratization enabled by the Internet made it possible for patients and caregivers to have access to the disease information that was once exclusive of the health professionals. In some cases, physicians are regarded as mere executors of prescriptions that the patient has already decided, and this position of resistance, non-cooperation and lack of trust is also a result of the absence of attention to interpersonal communication in medical class training. The idea that there is a diagnosis for each pathological condition and that for each diagnosis there is a set of specific treatment strategies continues to prevail in medical teaching. An example of this view 226

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 Health-Related Communication and Rare Diseases

is in the student’s assessments, in which they are assessed on the basis of the speed with which they are able to process the diagnosis and follow a therapeutic protocol. The problem lies in the universalistic relationships (based on general norms, which do not recognize the specificities of the individual interlocutors) that are favored, in which performance, specificity (i.e. being specialist in a field) and affective neutrality (i.e. no emotional involvement with the patient and his condition). Although the condition of objective physical, psychological and relational weakness, in which the patient finds himself /herself, the patient affective journey from emotional shock to anxiety for his/her own future has been overlooked within the medical community. A condition that inevitably makes it difficult to act with rationality and rely on certain beliefs and practices, trough fake news or what Freidson (1960) called “profane reference system” (the known person who suffered the same symptoms, the trusted pharmacist, an acquaintance who was once a nurse, etc.). In the patient’s journey, even in that of rare disease patient, four main elements can profoundly affect the relationship between the physician and patient (Rubinelli, Camerini, Schulz, 2010): the “anonymous” process, the “new diagnostics” and the “juridical and economization” process. Each element is detailed below: • •

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•

“Anonymous” process: A Physician who is a mere specialist in the area and its interaction with the patient and caregivers are from solely a technical intervention, with no social contact; The “new diagnostics”: Changes in the “diagnostic procedures” applied by the doctor also affected the doctor-patient relationship. They interact on the basis of different perspectives: the doctor tries to analyze the condition of the patient in order to follow a “standardized” diagnostic process and the patient wishes to receive information as much “personalized” as possible. This distance increases the difficulty of communication and understanding between the two agents in the communication process. The “juridical and economization” process: On the legal level, the “informed consent”, which is a mandatory, provides for the patient’s written acceptance of any examination, test or intervention. The physicians and other health professionals must now compulsorily sign an insurance to cover the costs of any legal action. It is evident that this juridical process can affect the choices of the physicians, who can opt for a type of treatment that exposes them less to the risk of legal actions even knowing that it may not be the most adequate and effective, and undermine the fiduciary agreement between the physician and the patient, making communication between the two less spontaneous.

Different forms of relationship between physicians and patients can also affect the patient’s journey before and after disease diagnosis, mainly with rare disease diagnosis. These are (Matteucci, 2015; Roter & Hall, 2006; Rubinelli, Camerini, Schulz, 2010): •

Paternalism: The “paternalistic” form provides an asymmetrical structure of the relationship based on a relationship of trust and on the responsibility that the healthcare professional assumes towards the patient. The mediation put in place by the doctor provides an authoritarian modality, with little involvement of the patient. The risk in this case is that the professional is not able to give the right weight to the information that the patient tells him/her about the disorder and, therefore, misunderstands the patient’s health conditions, in some cases even make a wrong diagnosis. This type of authoritarian mediation can compromise adherence and compliance by the patient, 227

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 Health-Related Communication and Rare Diseases

•

•

•

when he/she does not recognize the expert sufficient authority to support validity of some choices (Taylor, 2009). Consumerism: Mediation based on consumerism starts from the assumption of the patient’s reached autonomy and responsibility, relative to that stage which is most commonly entitled the “patient empowerment.” In this case, the relationship between patient and healthcare professional is transformed into the relationship between consumer and seller. This model of mediation usually attracts patients of medium-high culture, who have an active role in determining health costs, who seek information also by consulting technical texts and developing independent thoughts about their health conditions and their pathology. Reciprocity: The third form of relationship, that based on reciprocity, relationship-centered care, can be defined as an ideal relationship. Both the patient and the professional are oriented towards a critical discussion of the problems and neither plays an absolute role. To encourage this type of relationship, the professional should implement some forms of mediation (Brody, 1995): 1) create an atmosphere of openness, in which the patient perceives that the professional is willing to listen to him/her; 2) tune in to the patient’s expectations; 3) educate the patient on the nature of his/her problem, explaining the “expert” point of view in detail; and 4) understand the patient’s preferences and look for ways to negotiate. Carelessness: The model of “carelessness” refers to an interaction in which roles and goals are not clear. There is no will to reconcile dialogue between the two actors involved, doctors and patients, (Rubinelli, Camerini, Schulz, 2010).

In a nutshell, these different elements and interactions that occur among the different health stakeholders are essential to close or enlarge the gap established between “to cure” and “to care”. Whereas “to cure” means that the healthcare professional assumes the commitment and responsibility only for the patient’s physical health, “to care” embodies the patient’s psycho-social well-being. In fact, the expression “to care” expresses the commitment and the personal involvement of the health worker with the person suffering. An involvement that is also expressed through compassion, care, encouragement and emotional support. At the base of this difference, there is certainly an evolution of the relational, informational and managerial aspect of the professional towards the patient.

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CONCLUSION This chapter discussed the role of information and communication to extract health data in rare diseases and reinforce physician-patient interactions. It argued that information and communication are crucial to meet patients’ needs, drivers and decision-making that tend to occur during the patient’s journey. In the author’s perspective, patients with rare diseases have a two-step journey: 1. A journey before diagnosis; and 2. Post-diagnosis journey. Whereas in the first journey, the family has the main role being a communicative mediator with the outside world, in post-diagnosis, the physician, social networks, and reference communities become the protagonists. In addition, patient-physician interactions in rare diseases were addressed and its implications in the patient’s journey. Indeed, a relationship between health professionals, patients and family members are likely to be key to overcome the lack of access to health services, the discontinuity of care, or the “empty”

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care, sometimes perceived as abandonment, which is likely to occur especially when more interlocutors or more assistance modalities are necessary for the treatment. Taken together, communication in rare disease emerges as a passport for the patient journey. Communication imposes itself transversally through the patient journey, in the phases of pre-diagnosis and post-diagnosis. Moreover, it has become a concrete lever for intervention in various areas such as the provision and management of correct information through new and old means; “empathic” intermediation in the doctor-patient relationship, and, finally, as participation and support in the networks. Continued efforts are still needed to make health-related communication more accessible to patients with rare diseases.

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 Health-Related Communication and Rare Diseases

KEY TERMS AND DEFINITIONS HISB (Health Information Seeking Behaviors): The type and amount of information sources consulted and one’s decision-making and actions performed. Normalization: The patients and caregivers’ attitudes and actions in daily life, regardless of the disease and inherent changes in identity and social relationships. Paternalism (Physician-Patient Relationships): An asymmetrical structure of the relationship based on a relationship of trust and on the responsibility that the healthcare professional assumes towards the patient. Patient Empowerment: The patient demand for information and both participation in active (and interactive) health management and shared responsibilities with health stakeholders. Patient Journey: The patient responds to a disease over time, being influenced by the availability of information. These responses are physical, cognitive, emotional and social. Reciprocity (Physician-Patient Relationships): A form of relationship based on reciprocity and relationship-centered care, which can be defined as an ideal relationship.

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This research was previously published in Communicating Rare Diseases and Disorders in the Digital Age; pages 87-112, copyright year 2020 by Medical Information Science Reference (an imprint of IGI Global).

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Chapter 14

Approaching Empowerment Holistically: are Physicians Willing And Able?

The Case of Hematological Malignancies Christina Karamanidou Institute of Applied Biosciences, CERTH, Thessaloniki, Greece Kostas Stamatopoulos Institute of Applied Biosciences, CERTH, Thessaloniki, Greece Aliki Xochelli Institute of Applied Biosciences, CERTH, Thessaloniki, Greece

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ABSTRACT Patient empowerment is evident nowadays through the increased role undertaken by patients in the evaluation of healthcare, shaping health policy and involvement in clinical research. But are physicians willing and able to empower their patients? The biopsychosocial model offers a holistic approach to care by including the subjective experience of illness into clinical processes. Within this context, effective communication is key as it can contribute towards better clinical outcomes for patients as well as protect physicians from burnout due to emotional exhaustion. Hematological malignancies are the focus of this contribution as their nature and management pose serious challenges for patients to understand and physicians to explain. Physicians can play a pivotal role in encouraging patients’ empowerment by educating them about their illness, supporting them in self-management and involving them in their care. Communication skills training, availability of consultation tools and e-health applications can support physicians in their new role.

DOI: 10.4018/978-1-6684-2414-8.ch014

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 Approaching Empowerment Holistically: are Physicians Willing And Able?

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THE EVOLVING PHYSICIAN-PATIENT RELATIONSHIP The World Health Organization (1998) defines empowerment as “…a process through which people gain greater control over decisions and actions affecting their health…” The physicians’ role is therefore pivotal in equipping patients with the knowledge and skills required to participate in their care and navigate within the healthcare context. The paternalistic model assumes that the physician, having all the medical expertise, should set the agenda, goals and make the decisions. In other words, he/ she should act as a guardian in the patient’s best interest (Roter, 2000). Conversely, in the collaborative model there is balance of power since the model assumes that both parties can offer to the medical dialogue. On the one hand, the physician can contribute expertise, namely the medical details of an illness and its treatment, whereas on the other hand the patient can contribute his/ her illness experience, values, preferences etc. The relationship is a partnership where the agenda, goals, and decisions have been negotiated and jointly decided upon (Roter, 2000). The relationship between patients and physicians has greatly evolved over time. The observed changes in the patient-physician relationship should not come as a surprise if one considers the changes in the model of the illness. The biopsychosocial model of illness was put forward by Engel in the late seventies (Engel, 1977) as a holistic alternative to the dominant biomedical model. Unlike the biomedical model, which operated under the assumption that biological factors alone are responsible for causing an illness, the biopsychosocial model proposed that illness results from an interaction of biological, psychological and social factors. Therefore, the physician should look beyond the affected organ and attend to the patient as a whole. Engel, through the biopsychosocial model envisioned an empowered role for the patient, one that would drastically change the typical patient-physician relationship, characterized by a power differential. The biopsychosocial model constituted a novel paradigm whereby the patient’s subjective experience of illness is included into clinical evaluation and processes. This is currently expressed by the consideration of patient reported outcomes alongside biomedical data. Furthermore, it contributed towards the placement of patients at the center of care and the promotion of their active participation (Borrell-Carrió, Suchman, & Epstein, 2004). As a theoretical model, the main criticisms addressed at the biopsychosocial model concern the lack of testability, its generic nature and lack of method (Smith, Fortin, Dwamena, & Frankel, 2013): in other words, the model is criticized for essentially lacking scientific evidence. However, this is a somewhat unfair criticism of the biopsychosocial model. Many chronic illnesses, nowadays accounting for most of the morbidity and mortality in the Western world, have psychological and social components in their etiology. For example, research evidence indicates that stress can trigger psychological (i.e. increase of risk taking behaviors) (Andersen, Kiecolt-Glaser and Glaser, 1994) and physiological changes (i.e. immunosuppression) which have been associated with disease outcomes (Segerstrom & Miller, 2004). Research also suggests that social support can influence patients’ health status or psychological adjustment, reduce stressful impact of illness or encourage adherence (McInerney, 2015). Essentially, the true challenge is whether physicians will be able to efficiently identify biopsychosocial data from patients and apply the model in clinical practice (Smith et al., 2013; Gritti, 2017). A biopsychosocial-oriented clinical practice has been suggested by Borrell-Carrió et al. (2004) based on learning to self-monitor one’s performance, building patient trust, recognizing one’s own biases, cultivating empathic curiosity, observing emotions, communicating clinical evidence in ways it can be understood and using informed intuition, in other words, the insights one has arrived at using both cognitive and emotional capabilities. 239

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 Approaching Empowerment Holistically: are Physicians Willing And Able?

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THE ROLE OF PATIENTS’ ILLNESS AND TREATMENT BELIEFS The self-regulatory model of illness (SRM), first described by Leventhal and colleagues (Leventhal & Cameron, 1987), conceptualizes illness as a problem and the patient’s behavior as an attempt to solve that problem. The model also makes the hypothesis that patients create mental representations of their illness according to whatever information they have got available in order to make sense of the problem. Sources of information can include: a) ‘lay’ information, which refers to a cultural knowledge of illness, b) external social environment, which refers to information received from significant others or authoritative sources such as physicians, and c) information drawn from the patients’ current personal experience such as symptoms. Thus, patients will respond based on their interpretation of the health threat with a plan of action followed by an appraisal of the outcome. The product of this processing, which occurs in parallel at both a cognitive and an emotional level, is the formation of individuals’ representations of illness (Leventhal Meyer & Nerenz, 1980). Research has indicated that illness representations are structured around 5 components or illness beliefs: identity (concrete symptoms or signs of illness), cause (perceived ideas about how one gets the disease), consequences (perceived outcomes in physical, psychological and social terms), time-line (the likely course of the condition and how long it will last), and cure (person’s beliefs about cure and control) (Meyer, Leventhal & Gutmann, 1985). Evidence for the validity of illness representations constructs and their relationship with coping behaviors and illness outcomes has been brought forward by a meta-analytic review of 45 empirical studies carried out by Hagger and Orbell (2003). Beliefs in the serious negative consequences of a disease, perceived to be chronic in nature, were found to be negatively related to adaptive illness outcomes such as psychological well-being, social functioning and vitality. Conversely, these same beliefs were positively correlated with maladaptive outcomes like psychological distress (Hagger & Orbell, 2003). A high level of control was associated with the use of problem solving strategies, higher levels of subjective well-being and energy, lower distress and better clinical outcomes (Hagger & Orbell, 2003). The SRM has been further developed to also include beliefs about treatment (Horne, 1997). Early research has suggested that medication non-adherence may be the result of a rational decision by the patient (Horne & Weinman, 1998). A recent systematic review and meta-analysis (n=94) (Horne et al., 2013) has shown that patients’ judgments about their personal need for treatment and concerns about potential adverse consequences of taking it can influence treatment engagement and adherence across a range of long-term illnesses. Therefore, understanding the patients’ perspective and specifically eliciting and addressing their necessity and concerns is essential to shared decision-making and adherence support. One example to consider would be patients’ interpretation of symptoms and its impact on adherence. Symptoms, the concrete representations of the disease experience (Leventhal, Brissette & Leventhal, 2003), can either enhance medication use by reinforcing medication necessity beliefs (Horne, 2003) or interpreted as side effects (Horne et al., 2004) and can severely affect patients’ intention to continue with treatment. Leventhal and Cameron have suggested that failures in communication between healthcare professionals and patients in areas such as perception and evaluation of a health threat, coping and appraisal of coping efforts, can lead to non-adherence (Leventhal & Cameron, 1987). In a similar way, differences in treatment expectations between patients and healthcare professionals may lead to dissatisfaction with the treatment outcome.

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 Approaching Empowerment Holistically: are Physicians Willing And Able?

THE IMPORTANCE OF EFFECTIVE COMMUNICATION In the late 1960’s Korsch, Gozzi, & Francis (1968) studied physician-patient interactions and reported definite communication barriers causing patient dissatisfaction. Failing to take into account patient’s concerns and expectations, using medical terminology, offering no clear explanation concerning diagnosis and causation of illness were according to patients the most important factors affecting communication negatively. Furthermore, the idea that patient satisfaction with physician communication negatively affects patients’ treatment adherence was also put forward early on (Ley, 1982). Since then, evidence linking patient treatment adherence to physician patient communication is growing strong (Zolnierek & DiMatteo, 2009; Ha & Longnecker, 2010). Good physician-patient communication has been proven to enhance patients’ comprehension of medical information as well as enhance physicians’ ability to better identify patients’ needs and expectations and manage their emotions, with regards to diagnosis and management (Legare & Witteman, 2013). More importantly, it has been shown to make a significant difference to patient health outcomes, such as emotional health, symptom resolution, function, certain physiological measures and pain control (Stewart, 1995). Investigations with regards to the way communication leads to better health have led to the identification of several pathways, including greater patient knowledge, shared understanding, patient empowerment, better emotional management, higher quality medical decisions and increased access to care (Street et al., 2009). Conversely, a lack of consensus between patients and physicians can leave patients feeling disempowered and distressed, thus preventing them from achieving their health goals (Pettengell et al., 2008).

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THE EFFECTS OF POOR COMMUNICATION Communication has been characterized as a ‘core clinical skill’ (Fallowfield & Jenkins, 1999). Insufficient communication skills constitute a major contributing factor to physicians’ stress, low job satisfaction and burnout. Burnout syndrome is the response to prolonged psychological stress at work (Leiter & Maslach, 2000). It involves feelings of emotional exhaustion, depersonalization and reduced personal accomplishment. Evidence suggests that the majority of physicians, currently in practice, are affected by burnout and that numbers are rising (Shanafelt et al., 2015). Feeling emotionally drained, doubting one’s effectiveness and harboring negative feelings towards care recipients can affect a physician’s availability to patients. In the long-term, this can negatively affect physician-patient relationship, quality of care and even patient safety (Lyndon, 2016). Increasingly difficult work conditions in modern healthcare organizations can test the physical, cognitive and emotional limitations of individual physicians (Epstein & Privitera, 2016). Announcing bad news, subjecting patients to potentially toxic therapies as well as treatment failure and grief over the loss of patients and feelings of helplessness, guilt and failure can all contribute to physician burnout (Brown et al., 2009; Friedrichsen, 2006; Granek et al., 2012). Treatment of physician burnout can be achieved through interventions such as mindfulness training i.e. training physicians to notice physical changes, emotions or thoughts and accept their presence before these become unmanageable (West et al., 2016).

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 Approaching Empowerment Holistically: are Physicians Willing And Able?

THE PATH TO COMMUNICATING MEDICINE Communication skills training programs provided in the context of medical training or continuous professional development could act as a burnout prevention measure. There is a growing body of literature suggesting that healthcare professionals who have been insufficiently trained in communication and lack confidence have higher levels of distress and, consequently, are at increased risk of burnout (Ramirez et al., 1995; Girgis et al., 2009; Emold et al., 2011). Specifically, in the area of cancer, physicians encounter a lot of communication challenges across the illness trajectory, namely disclosure of the cancer diagnosis, treatment failure or relapse, transition to palliative and subsequently end-of-life care (Parker et al., 2009; Baile et al., 2000). Furthermore, physicians are greatly concerned about balancing realism and hope or responding appropriately to patients’ emotions (Baile et al., 2000; Friedrichsen, 2006). Evidence suggests that physicians’ communication skills do not improve by experience only. Conversely, communication skills programs are effective in improving physicians’ use of open questions, display of empathy and sense of self-efficacy (Baile et al., 2000; Moore et al., 2004). Furthermore, communication tools have also been found to offer guidance to physicians looking to communicate evidence-based medical information as well as facilitate the exploration of patients’ preferences with regards to treatment options (Giguere et al., 2012). Systematic review of the literature suggests that decision aids can not only improve knowledge, reduce anxiety levels and decision-making conflicts but also promote patients’ active participation in care decisions (O’ Connor et al., 1999; O’ Connor et al., 2003). In conclusion, communication skills are required during any act of care, either while providing support, giving instructions or administering treatment and are therefore essential both for the physician’s as well as for the patient’s well-being.

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PATIENT EMPOWERMENT AND THE CONTRIBUTION OF E-HEALTH Patients’ increased engagement and greater involvement in healthcare is visible both a micro and macro level. Currently, they are offering their perspective through self-report data, which will serve as patient reported outcomes in clinical trials. Quality of life data is now collected with specialized measures (e.g. European Organization for Research and Treatment of Cancer tools), and analyzed in conjunction with clinical data in every new clinical cancer trial (http://groups.eortc.be/qol/). Furthermore, at another level patients nowadays can evaluate and shape the delivery of healthcare services they receive. An example is CareOpinion, a website where patients can share stories of care delivery, offer their positive or negative feedback and propose changes to staff who is listening (https://www.careopinion.org.uk/). Patients can get involved in clinical research including agenda setting, study design, communication, and ethics through the Innovative Medicines Initiative (https://www.imi.europa.eu/get-involved/patients). Finally, patients can participate also at a policy level through bodies such as the International Alliance of Patient Organizations (https://www.iapo.org.uk/) to promote patient centered healthcare everywhere. The contribution of e-health in patient empowerment has been paramount. In the area of cancer alone, numerous e-health systems and applications have been designed and successfully used to: improve patients’ symptom assessment and management (Allshop et al., 2014), reduce patients’ physical distress (Gustafson et al., 2013), improve patients’ communication with the healthcare team (Lindberg et al., 2013), enable patients to participate in healthcare team meetings where plans of care are discussed (Wittenberg-Lyles et al., 2010), educate patients on their particular condition, collect data and formulate

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 Approaching Empowerment Holistically: are Physicians Willing And Able?

queries (Dy et al., 2011), improve patients’ emotional distress and levels of happiness through the use of virtual reality (Espinoza et al., 2012), etc.

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THE CASE OF HEMATOLOGICAL MALIGΝANCIES Hematological malignancies comprise a collection of diverse conditions with rising incidence in the Western world (Rodriguez-Abreu et al., 2007; Batista et al., 2017). Patients with hematological malignancies experience more difficulties in understanding and managing health-related information compared to patients with solid tumors. It has been suggested that this may be due to the fact that the focus of the disease is not specific (Baglin, 2009). Furthermore, patients’ inability to connect the symptoms of the disease to a specific body site along with the uncertainty characterizing many treatment strategies may even impede their desire to actively participate in the decision-making process (Ernst et al., 2013). Chronic lymphocytic leukemia (CLL) is a paradigmatic chronic hematologic malignancy whose management and nature are hard for both patients to understand and physicians to explain. Specifically, in CLL more than 80% of patients do not have specific clinical symptoms at diagnosis. Furthermore, despite the diagnosis of an incurable blood cancer, 85% of patients do not need treatment at diagnosis, a fact which is very hard for patient to accept (Evans et al., 2012), as they feel nothing is done to fight the disease. However, studies show that 56% of patients think about their disease on a daily basis and report lower levels of psychological well-being compared to other cancer patients (Shanafelt et al., 2007; Shanafelt et al., 2009). The psychological impact is equally great for both patients who are under active surveillance and patients in active treatment as evidenced by increased levels of anxiety and depression (Evans et al., 2012; Levin et al., 2007; Holzner et al., 2004). Moreover, CLL patients report lower quality of life levels (Else et al., 2008; Levin et al., 2007) and decreased role functionality due to fatigue, sleep disturbances and emotional problems. However, the physical dimension of illness is not the only one dictating patients’ well-being. CLL patients’ illness perceptions have been shown to play a significant role. Specifically, patients who perceived CLL to be a threatening illness have been reported to experience lower levels of emotional (anxiety, depression, mental health) and physical (fatigue, pain) quality of life (Westbrook, 2014). Moreover, the relationship with the physician as well as the support patients felt they received is also very important. According to (Shanafelt et al., 2007), 90% of CLL patients are certain that their physician is effectively tracking the progress of their disease while 70% feel that their physician comprehends the consequences of CLL on their quality of life. Indeed, the physician’s effectiveness was judged in terms of the management of physical, spiritual and emotional challenges that accompany the illness experience. Follicular Lymphoma (FL) is another chronic and incurable hematologic malignancy whose symptoms are transient and non-specific therefore causing patients great uncertainty (Elphee, 2008). Repeated relapses are especially hard on patients psychologically (Cheung et al., 2009) and can be accompanied by feelings of loss of control, anxiety and depression. Patients who have relapsed report lower levels of physical, emotional, and social well-being (Pettengell et al., 2008). FL patients report that good communication with their physician can reduce uncertainty and quieten their anxiety (Thomson et al., 2010). They appear to require more information with regards to the cause and progression of disease, late onset effects of therapy and available psychosocial support, suggesting that physicians tend to underestimate the amount of information patients require (Oerlemans et al., 2012).

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 Approaching Empowerment Holistically: are Physicians Willing And Able?

Finally, chronic myelogenous leukemia (CML) is a chronic hematologic malignancy, which affects quality of life in terms of physical, emotional and social functioning (Efficace et al., 2011). New pharmacological therapies have made it possible for patients who achieve a complete molecular response to attempt treatment discontinuation upon their physician’s advice. However, adherence is the most important factor in achieving a molecular response yet 26% of patients have an adherence rate lower than 90% (Marin et al., 2010). Furthermore, the majority of CML patients are apprehensive towards the possibility of interrupting treatment, which has worked well for them (Breccia et al., 2015). Eliciting the patients’ perspective shed some light into factors affecting behavior towards medication. Eliasson, Clifford, Barber, & Marin (2011) investigated the reasons for non-adherence of CML patients. Among the reasons reported were: side effects, patient recall bias, adherence behavior changes over time, underestimating the impact of non-adherence, reliance on monitoring and miscommunication with the physician. Regarding the possibility of treatment discontinuation, CML patients report they have a number of concerns. More specifically, fear that molecular remission will not be sustained; that the therapy will not be as successful after a relapse; that the treatment will have serious adverse effects if the treatment is re-introduced; and, that the psychological impact of interrupting treatment and relapsing will be too severe (Boquimpani et al., 2014). Finally, CML patients have different priorities and different expectations from the relationship with their physician. Indeed, significant differences exist when comparing patients and physicians’ valuation of quality of life aspects in terms of symptoms intensities such as dry mouth, trouble concentrating, frequent urination, drowsiness and skin problems (Efficace et al., 2012). Finally, Breccia et al. (2015) in a patient-based survey of 1133 CML patients found that the majority discussed with their attending physician about the importance of adherence and received sufficient information about illness and treatment. However, they would also like to have been able to discuss other issues such as psychological problems, discomfort, sexual problems, relationships, problems at work etc. The challenges that hematological malignancies pose for patients e.g. lack of symptoms, active surveillance etc. to name but a few, as well their increased needs compared to solid tumor patients has been illustrated by the evidence already cited for CLL, FL and CML. Physicians witness patients struggling with these issues in their everyday clinical practice. Supporting, educating and involving patients in their care requires complex communication skills and tools, now becoming a pressing need for physicians. A recently conducted qualitative study with hematologists from all over Greece found that none of them had ever received formal communication training. The communication techniques they used were either adopted by senior physicians, or developed through their own experience and consequently they frequently doubted their approaches. They reported often having to deal with patient emotions and manage their anxiety and depression. Most physicians felt uncomfortable delivering bad news such as initial diagnosis, relapse and poor prognosis. Communication skills training was among their self-reported needs (Karamanidou et al., 2017).

CONCLUSION Discrepancies exist in priorities and perceptions concerning the physical, psychological and social effects of illness and treatment between patients and physicians. This is the exact reason why the perspective of the patient needs to be elicited and their subjective experience taken into account when planning, delivering or evaluating care. The question that arises is whether physicians are willing and able to live 244

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 Approaching Empowerment Holistically: are Physicians Willing And Able?

up to their new role of encouraging patient empowerment. More specifically, to: a) educate patients about illness and treatment b) support them in achieving self-management c) involve them in care and engage them in shared decision making. The available evidence indicates physicians will be able to support their patients into empowerment addressing their needs holistically based on the following conditions; training on complex communication skills, availability of educational, decision-making and other consultation tools; facilitation through e-health applications.

ACKNOWLEDGMENT Gilead Sciences Greece, Janssen Cilag Greece, Janssen EMEA C.K., A.X. and K.S. designed the study, performed research and wrote the paper.

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Boquimpani, C. M., Szczudlo, T., Mendelson, E., Benjamin, K., & Masszi, T. (2014). Attitudes and Perceptions of Patients (pts) with Chronic Myeloid Leukemia in Chronic Phase (CML-CP) Toward Treatment-Free Remission (TFR). Blood, 124(21), 4547–4547. Borrell-Carrió, F., Suchman, A. L., & Epstein, R. M. (2004). The biopsychosocial model 25 years later: Principles, practice, and scientific inquiry. Annals of Family Medicine, 2(6), 576–582. doi:10.1370/afm.245 Breccia, M., Efficace, F., Sica, S., Abruzzese, E., Cedrone, M., & Turri, D. … Cavazzini, F. (2015). Adherence and future discontinuation of tyrosine kinase inhibitors in chronic phase chronic myeloid leukemia. A patient-based survey on 1133 patients. Leukemia Research, 39(10), 1055–1059. doi:10.1016/j. leukres.2015.07.004

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Brown, S. D., Goske, M. J., & Johnson, C. M. (2009). Beyond substance abuse: Stress, burnout, and depression as causes of physician impairment and disruptive behavior. Journal of the American College of Radiology, 6(7), 479–485. doi:10.1016/j.jacr.2008.11.029 Cheung, M. C., Imrie, K. R., Friedlich, J., Buckstein, R., Lathia, N., & Mittmann, N. (2009). The impact of follicular (FL) and other indolent non‐Hodgkin’s lymphomas (NHL) on work productivity–a preliminary analysis. Psycho-Oncology, 18(5), 554–559. doi:10.1002/pon.1404 Dy, S. M., Roy, J., Ott, G. E., McHale, M., Kennedy, C., Kutner, J. S., & Tien, A. (2011). Tell Us™: A web-based tool for improving communication among patients, families, and providers in hospice and palliative care through systematic data specification, collection, and use. Journal of Pain and Symptom Management, 42(4), 526–534. doi:10.1016/j.jpainsymman.2010.12.006 Efficace, F., Baccarani, M., Breccia, M., Alimena, G., Rosti, G., Cottone, F., ... Luciano, L. (2011). Healthrelated quality of life in chronic myeloid leukemia patients receiving long-term therapy with imatinib compared with the general population. Blood, 118(17), 4554–4560. doi:10.1182/blood-2011-04-347575 Efficace, F., Baccarani, M., Rosti, G., Cottone, F., Castagnetti, F., Breccia, M., ... Gherlinzoni, F. (2012). Investigating factors associated with adherence behaviour in patients with chronic myeloid leukemia: An observational patient-centered outcome study. British Journal of Cancer, 107(6), 904–909. doi:10.1038/ bjc.2012.348 Eliasson, L., Clifford, S., Barber, N., & Marin, D. (2011). Exploring chronic myeloid leukemia patients’ reasons for not adhering to the oral anticancer drug imatinib as prescribed. Leukemia Research, 35(5), 626–630. doi:10.1016/j.leukres.2010.10.017 Elphee, E. E. (2008). Understanding the concept of uncertainty in patients with indolent lymphoma. Oncology Nursing Forum, 35(3), 449–454. doi:10.1188/08.ONF.449-454 Else, M., Smith, A. G., Cocks, K., Richards, S. M., Crofts, S., Wade, R., & Catovsky, D. (2008). Patients’ experience of chronic lymphocytic leukaemia: Baseline health related quality of life results from the LRF CLL4 trial. British Journal of Haematology, 143(5), 690–697. doi:10.1111/j.1365-2141.2008.07407.x Emold, C., Schneider, N., Meller, I., & Yagil, Y. (2011). Communication skills, working environment and burnout among oncology nurses. European Journal of Oncology Nursing, 15(4), 358–363. doi:10.1016/j. ejon.2010.08.001

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Engel, G. L. (1977). The need for a new medical model: A challenge for biomedicine. Science, 196(4286), 129–136. doi:10.1126cience.847460 Epstein, R. M., & Privitera, M. R. (2016). Doing something about physician burnout. Lancet, 388(10057), 2216–2217. doi:10.1016/S0140-6736(16)31332-0 Ernst, J., Kuhnt, S., Schwarzer, A., Aldaoud, A., Niederwieser, D., Mantovani‐Löffler, L., ... Schröder, C. (2011). The desire for shared decision making among patients with solid and hematological cancer. Psycho-Oncology, 20(2), 186–193. doi:10.1002/pon.1723 Espinoza, M., Baños, R. M., Garcia-Palacios, A., Cervera, J. M., Esquerdo, G., Barrajón, E., & Botella, C. (2012). Promotion of emotional wellbeing in oncology inpatients using VR.

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Evans, J., Ziebland, S., & Pettitt, A. R. (2012). Incurable, invisible and inconclusive: Watchful waiting for chronic lymphocytic leukaemia and implications for doctor–patient communication. European Journal of Cancer Care, 21(1), 67–77. doi:10.1111/j.1365-2354.2011.01278.x Fallowfield, L., & Jenkins, V. (1999). Effective communication skills are the key to good cancer care. European Journal of Cancer, 35(11), 1592–1597. doi:10.1016/S0959-8049(99)00212-9 Friedrichsen, M., & Milberg, A. (2006). Concerns about losing control when breaking bad news to terminally ill patients with cancer: Physicians’ perspective. Journal of Palliative Medicine, 9(3), 673–682. doi:10.1089/jpm.2006.9.673 Giguere, A., Légaré, F., Grad, R., Pluye, P., Haynes, R. B., Cauchon, M., ... Labrecque, M. (2012). Decision boxes for clinicians to support evidence-based practice and shared decision making: The user experience. Implementation Science; IS, 7(1), 72. doi:10.1186/1748-5908-7-72 Girgis, A., Hansen, V., & Goldstein, D. (2009). Are Australian oncology health professionals burning out? A view from the trenches. European Journal of Cancer, 45(3), 393–399. doi:10.1016/j.ejca.2008.09.029 Granek, L., Tozer, R., Mazzotta, P., Ramjaun, A., & Krzyzanowska, M. (2012). Nature and impact of grief over patient loss on oncologists’ personal and professional lives. Archives of Internal Medicine, 172(12), 964–966. doi:10.1001/archinternmed.2012.1426 Gritti, P. (2017). The bio-psycho-social model forty years later: A critical review. Journal of Psychosocial Systems, 1(1), 36–41. Gustafson, D. H., DuBenske, L. L., Namkoong, K., Hawkins, R., Chih, M. Y., Atwood, A. K., ... Campbell, T. C. (2013). An eHealth system supporting palliative care for patients with non–small cell lung cancer. Cancer, 119(9), 1744–1751. doi:10.1002/cncr.27939 Ha, J. F., & Longnecker, N. (2010). Doctor-patient communication: A review. The Ochsner Journal, 10(1), 38–43. Hagger, M. S., & Orbell, S. (2003). A meta-analytic review of the common-sense model of illness representations. Psychology & Health, 18(2), 141–184. doi:10.1080/088704403100081321 Health promotion glossary. (1998). Geneva: World Health Organization.

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Holzner, B., Kemmler, G., Kopp, M., Nguyen‐Van‐Tam, D., Sperner‐Unterweger, B., & Greil, R. (2004). Quality of life of patients with chronic lymphocytic leukemia: Results of a longitudinal investigation over 1 yr. European Journal of Haematology, 72(6), 381–389. doi:10.1111/j.1600-0609.2004.00233.x Horne, R. (1997). Representations of medication and treatment: advances in theory and measurement. In J. Weinman & K. J. Petrie (Eds.), Perceptions of health and illness. Harwood Academic Publishers. Horne, R. (2003). Treatment perceptions and self-regulation. In The self-regulation of health and illness behaviour (pp. 138-153). Horne, R., Buick, D., Fisher, M., Leake, H., Cooper, V., & Weinman, J. (2004). Doubts about necessity and concerns about adverse effects: Identifying the types of beliefs that are associated with non-adherence to HAART. International Journal of STD & AIDS, 15(1), 38–44. doi:10.1258/095646204322637245

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Horne, R., Chapman, S. C., Parham, R., Freemantle, N., Forbes, A., & Cooper, V. (2013). Understanding patients’ adherence-related beliefs about medicines prescribed for long-term conditions: A meta-analytic review of the Necessity-Concerns Framework. PLoS One, 8(12). doi:10.1371/journal.pone.0080633 Horne, R., & Weinman, J. (1998). Predicting treatment adherence. In L. Myers & K. Midence (Eds.), Adherence to Treatment in Medical Conditions (pp. 25–50). CRC Press. Karamanidou, C., Xochelli, A., Koutkias, V., Ghia, P., & Stamatopoulos, K. (2017). Do physicians need help to adequately inform and support patients with Chronic Lymphocytic Leukemia? Results from a qualitative study in Greece (Poster number: P378). Presented at Poster session of the European Hematology Association (EHA) Congress, Madrid, Spain, June 21-25. Retrieved June 4, 2018 from https:// learningcenter.ehaweb.org/eha/2017/22nd/181665/aliki.xochelli.do.physicians.need.help.to.adequately. inform.and.support.html Korsch, B. M., Gozzi, E. K., & Francis, V. (1968). Gaps in doctor-patient communication: I. Doctorpatient interaction and patient satisfaction. Pediatrics, 42(5), 855–871. Légaré, F., & Witteman, H. O. (2013). Shared decision making: Examining key elements and barriers to adoption into routine clinical practice. Health Affairs, 32(2), 276–284. doi:10.1377/hlthaff.2012.1078 Leiter, M. P., & Maslach, C. (2000). Burnout and health. In Handbook of health psychology (pp. 415–426). Psychology Press. Leventhal, H., Brissette, I., & Leventhal, E. A. (2003). The common-sense model of self-regulation of health and illness. In L. Cameron & H. Leventhal (Eds.), The self-regulation of health and illness behaviour (Vol. 1, pp. 42–65). Taylor & Francis Group. Leventhal, H., & Cameron, L. (1987). Behavioral theories and the problem of compliance. Patient Education and Counseling, 10(2), 117–138. doi:10.1016/0738-3991(87)90093-0 Leventhal, H., Meyer, D., & Nerenz, D. (1980). The common sense representation of illness danger. Contributions to medical psychology, 2, 7-30. Levin, T. T., Li, Y., Riskind, J., & Rai, K. (2007). Depression, anxiety and quality of life in a chronic lymphocytic leukemia cohort. General Hospital Psychiatry, 29(3), 251–256. doi:10.1016/j.genhosppsych.2007.01.014

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Ley, P. (1982). Satisfaction, compliance and communication. British Journal of Clinical Psychology, 21(4), 241–254. doi:10.1111/j.2044-8260.1982.tb00562.x Lindberg, B., Nilsson, C., Zotterman, D., Söderberg, S., & Skär, L. (2013). Using information and communication technology in home care for communication between patients, family members, and healthcare professionals: A systematic review. International Journal of Telemedicine and Applications. Lyndon, A. (2016). Burnout among health professionals and its effect on patient safety. Agency of Healthcare Research and Quality.

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Marin, D., Bazeos, A., Mahon, F. X., Eliasson, L., Milojkovic, D., & Bua, M. … Paliompeis, C. (2010). Adherence is the critical factor for achieving molecular responses in patients with chronic myeloid leukemia who achieve complete cytogenetic responses on imatinib. Journal of Clinical Oncology, 28(14), 2381–2388. doi:10.1200/JCO.2009.26.3087 McInerney, S. J. (2015). Introducing the biopsychosocial model for good medicine and good doctors. BMJ (Clinical Research Ed.), 324, 1533. Meyer, D., Leventhal, H., & Gutmann, M. (1985). Common-sense models of illness: The example of hypertension. Health Psychology, 4(2), 115–135. doi:10.1037/0278-6133.4.2.115 Moore, P. M., Wilkinson, S. S., & Rivera Mercado, S. (2004). Communication skills training for health care professionals working with cancer patients, their families and/or carers. Cochrane Database of Systematic Reviews, 2. O’ Connor, A. M., Rostom, A., Fiset, V., Tetroe, J., Entwistle, V., Llewellyn-Thomas, H., ... Jones, J. (1999). Decision aids for patients facing health treatment or screening decisions: Systematic review. BMJ (Clinical Research Ed.), 319(7212), 731–734. doi:10.1136/bmj.319.7212.731 O’ Connor, A. M., Stacey, D., Entwistle, V., Llewellyn-Thomas, H., Rovner, D., & Holmes-Rovner, M. … Jones, J. (2003). Decision aids for people facing health treatment or screening decisions. Cochrane Database of Systematic Reviews, 2. Oerlemans, S., Mols, F., Nijziel, M. R., Lybeert, M., & van de Poll-Franse, L. V. (2011). The impact of treatment, socio-demographic and clinical characteristics on health-related quality of life among Hodgkin’s and non-Hodgkin’s lymphoma survivors: A systematic review. Annals of Hematology, 90(9), 993–1004. doi:10.100700277-011-1274-4 Parker, P. A., Aaron, J., & Baile, W. F. (2009). Breast cancer: Unique communication challenges and strategies to address them. The Breast Journal, 15(1), 69–75. doi:10.1111/j.1524-4741.2008.00673.x Pettengell, R., Donatti, C., Hoskin, P., Poynton, C., Kettle, P. J., Hancock, B., & Wild, D. (2008). The impact of follicular lymphoma on health-related quality of life. Annals of Oncology : Official Journal of the European Society for Medical Oncology, 19(3), 570–576. doi:10.1093/annonc/mdm543

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Ramirez, A. J., Graham, J., Richards, M. A., Cull, A., Gregory, W. M., Leaning, M. S., ... Timothy, A. R. (1995). Burnout and psychiatric disorder among cancer clinicians. British Journal of Cancer, 71(6), 1263–1269. doi:10.1038/bjc.1995.244 Rodriguez-Abreu, D., Bordoni, A., & Zucca, E. (2007). Epidemiology of hematological malignancies. Annals of Oncology : Official Journal of the European Society for Medical Oncology, 18(Suppl. 1), i3–i8. Roter, D. (2000). The enduring and evolving nature of the patient–physician relationship. Patient Education and Counseling, 39(1), 5–15. doi:10.1016/S0738-3991(99)00086-5 Segerstrom, S. C., & Miller, G. E. (2004). Psychological stress and the human immune system: A meta-analytic study of 30 years of inquiry. Psychological Bulletin, 130(4), 601–630. doi:10.1037/00332909.130.4.601

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Shanafelt, T. D., Bowen, D., Venkat, C., Slager, S. L., Zent, C. S., & Kay, N. E. … Call, T. G. (2007). Quality of life in chronic lymphocytic leukemia: An international survey of 1482 patients. British Journal of Haematology, 139(2), 255–264. doi:10.1111/j.1365-2141.2007.06791.x Shanafelt, T. D., Bowen, D. A., Venkat, C., Slager, S. L., Zent, C. S., & Kay, N. E. … Call, T. G. (2009). The physician–patient relationship and quality of life: Lessons from chronic lymphocytic leukemia. Leukemia Research, 33(2), 263–270. doi:10.1016/j.leukres.2008.06.019 Shanafelt, T. D., Hasan, O., Dyrbye, L. N., Sinsky, C., Satele, D., Sloan, J., & West, C. P. (2015). Changes in burnout and satisfaction with work-life balance in physicians and the general US working population between 2011 and 2014. Mayo Clinic Proceedings, 90(12), 1600–1613. doi:10.1016/j.mayocp.2015.08.023 Smith, R. C., Fortin, A. H., Dwamena, F., & Frankel, R. M. (2013). An evidence-based patient-centered method makes the biopsychosocial model scientific. Patient Education and Counseling, 91(3), 265–270. doi:10.1016/j.pec.2012.12.010 Stewart, M. A. (1995). Effective physician-patient communication and health outcomes: A review. CMAJ: Canadian Medical Association Journal, 152(9), 1423. Street, R. L. Jr. (2013). How clinician–patient communication contributes to health improvement: Modeling pathways from talk to outcome. Patient Education and Counseling, 92(3), 286–291. doi:10.1016/j. pec.2013.05.004 Street, R. L. Jr, Makoul, G., Arora, N. K., & Epstein, R. M. (2009). How does communication heal? Pathways linking clinician–patient communication to health outcomes. Patient Education and Counseling, 74(3), 295–301. doi:10.1016/j.pec.2008.11.015 Thompson, C. A., Charlson, M. E., Schenkein, E., Wells, M. T., Furman, R. R., Elstrom, R., ... Leonard, J. P. (2010). Surveillance CT scans are a source of anxiety and fear of recurrence in long-term lymphoma survivors. Annals of Oncology : Official Journal of the European Society for Medical Oncology, 21(11), 2262–2266. West, C. P., Dyrbye, L. N., Erwin, P. J., & Shanafelt, T. D. (2016). Interventions to prevent and reduce physician burnout: A systematic review and meta-analysis. Lancet, 388(10057), 2272–2281. doi:10.1016/ S0140-6736(16)31279-X

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Westbrook, T. D. (2014). The Relation of Illness Perception to Psychological Distress and Physical Symptom Burden in Relapsed/Refractory Chronic Lymphocytic Leukemia [Doctoral dissertation]. The Ohio State University. Wittenberg-Lyles, E., Oliver, D. P., Demiris, G., & Baldwin, P. (2010). The ACTive intervention in hospice interdisciplinary team meetings: Exploring family caregiver and hospice team communication. Journal of Computer-Mediated Communication, 15(3), 465–481. doi:10.1111/j.1083-6101.2010.01502.x Zolnierek, K. B. H., & DiMatteo, M. R. (2009). Physician communication and patient adherence to treatment: A meta-analysis. Medical Care, 47(8), 826–834. doi:10.1097/MLR.0b013e31819a5acc

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Chapter 15

Health Literacy From a Pediatrician’s Perspective: Health Literacy Nazan Sarper Kocaeli University, Turkey

ABSTRACT Health literacy describes individual’s skills to understand and use the information on health issues, compliance to the prescribed therapeutic regimen, prevention of disease and accidents, filtering the information, and making good judgments to maintain a healthy life. Low school education and fundamental education and poverty are barriers to gain health literacy. If TV broadcasts are used optimally for training in health issues, they may reach many people. The density of the active physicians, nurses and midwives, national health coverage, and training activities of the civil associations for chronic disease contribute to health literacy. Controversy exists about the benefits and risks of social media and mass media to health literacy due to information pollution. Self-diagnosis and marketing of under-thecounter drugs are problems of the digital age. Some projects aiming to improve digital health literacy skills will help people to reach reliable health-related information. Communication skills of healthcare professionals are also important.

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INTRODUCTION It is clear that without being healthy, everything in life loses its meaning and importance. A cancer diagnosis in the family changes living or working conditions, economic status and mood of every member in the family. It may change future plans of the individual or may even cause death. A vaccine preventable infection may change a healthy child to a disabled individual. In the history, three major plague pandemics named also as ‘’Black Death’, caused millions of deaths until cause is understood and spread is controlled. Pathogen bacteria infects small rodents (like rats, mice, and squirrels) and is transmitted to humans through the bite of an infected flea. It was a disaster in Europe, Asia and Africa. But it is DOI: 10.4018/978-1-6684-2414-8.ch015

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Research Anthology on Improving Health Literacy Through Patient Communication and Mass Media, edited by Association, Information Resources Management, IGI Global, 2021. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/nyulibrary-ebooks/detail.action?docID=6686709. Created from nyulibrary-ebooks on 2021-09-02 06:30:41.

 Health Literacy From a Pediatrician’s Perspective

suggested that this disaster induced the development of science and even the emergence of Renaissance. Health is the most important issue for well-being of the individuals and even nations. (Center for Disease Control and Prevention, 2019a) For a physically and mentally healthy individual and community, in addition to preventive and clinical medicine organization of the country, health literacy is important. In this chapter main components and issues of the health literacy, preventive care and recommendations to improve health literacy in the digital age are discussed.

BACKGROUND

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Since introduction of the health literacy concept in 1970’s many definitions were suggested (Simonds, 1974). In 1998 World Health Organization (WHO) definition was “The cognitive and social skills which determine the motivation and ability of the individuals to gain access to understand and use information in ways which promote and maintain good health” (Nutbeam, 1998). In United States it was used to define relationship between the patient’s literacy and compliance to the prescribed therapeutic regimen (Ad Hoc Committee on Health Literacy, 1999). European Union definition in 2007 was “The ability to read, filter and understand health information in order to form sound judgments” (European Commission, 2007). Australian Bureau of Statistics’ definition in 2008 was “The knowledge and skills required to understand and use information relating to health issues such as drugs and alcohol, disease prevention and treatment, safety and accident prevention, first aid, emergencies, and staying healthy” (Australian Bureau of Statistics, 2008). These definitions cover some important elements. a) Personal skills to understand the information b)The ability to filter and make good judgments (critical health literacy) c)To use the information to maintain a healthy life (to prevent disease, accidents, compliance to prescribed therapeutic regimen). It is important to discuss the contribution of good health literacy to a healthy life and factors effecting health literacy skills. These factors are related to individual’s capacity, national health policy and organizations of the community. Health literacy study of America showed that about one thirds of the people had very low health literacy (Kutner et al, 2007). Another issue is the contents of the health information that should be given to community. As an experienced physician, the author thinks that preventive medicine has extreme importance. Information about clinical medicine can be gained when a patient developed a disease. In this setting, communication skills of the health care providers, training materials and organizations of the community will help to improve patient’s skills for compliance to treatment. Poor school literacy and fundamental literacy is an obstacle for good health literacy. Printed media, mass media, TV broadcasts and internet may be used to improve health literacy but they may be also harmful by releasing unreliable information and advertising and marketing under the counter drugs.

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 Health Literacy From a Pediatrician’s Perspective

MAIN FOCUS OF THE CHAPTER Components of the Health Literacy and Health Care

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Individual’s Capacity to Have Good Health Literacy Poor visual and auditory acuity, learning disabilities, advanced age, language problems due to immigration and low fundamental education levels are all obstacles for good health literacy. Some of these problems may be overcome by the help of more capable relatives or translators of the institutions. Primary and secondary school education or fundamental education is essential for individual’s skills in prose literacy, document literacy, numeracy, problem solving and oral communications. Some patients struggle to understand written information. Giving genetic counseling to parents having a child with an autosomal recessively inherited disease due to consanguineous marriage is not always possible if they are not familiar to the terms like ‘’gene’’, ‘’chromosome’’. They generally do not believe that they are carriers for this mutation and the same risk is present for subsequent pregnancies. In addition to fundamental education, adult education programs are required for people who completed this education but did not gain adequate skills or who did not have the chance for attending school or who is immigrant and requires to learn the formal language of the country. Some treatments as hematopoietic bone marrow transplantation are very complex both for the hematologists and the patients. After discharge from the unit, many medications should be taken on the right time and dose. Care of an immunocompromised patient also requires good health literacy. Food must be cooked and preserved in hygienic conditions. Parents should learn using central venous catheters. Compliance of the family should be evaluated before planning such complex treatments. In the clinical trials, the most important issue is enrolling the right patient to the study. This is not only the patient carrying the enrolment criteria, but the patient with good health literacy who will understand the study objective, informed consent form, take the medication on time, record some data to the diary, will not miss the visits and will inform the investigator about the adverse events. Some parents with low literacy even give harm to their children with poor compliance to treatment. In the author’s experience a two-year-old boy with thalassemia major was lost to follow-up for one year after the first packed red cell transfusion. Then the patient presented with a huge splenomegaly, failure to thrive and severe anemia. Parents confessed that they did not believe in the diagnosis because they do not know somebody with that disease and everybody in their family is healthy. Patients with poor literacy do not read and/or understand the booklets about the disease or search the subject from the internet. Contents of the text-books, the education programs, skills and the post-graduate training of the teachers are important elements in the basic education. Text books in schools are not generally interesting for the students when necessary integration of this knowledge to the daily life is missing. Poor consequences of the consanguineous marriages due to autosomal recessive inheritance should be emphasized in biology classes. This is a real problem in the East Anatolia similar to Middle East, West Asia and North Africa. This social trend is also observed globally due to immigration in the North America, Europe and Australia (Hamamy, 2012). In less developed South-East Anatolia, the incidence of the consanguineous marriages is 42.6% (Türkiye İstatistik Kurumu, ‘’Turkish Statistical Institute’’, 2017). There is premarital screening program for hemoglobinopathies in many cities of Turkey, but to detect carriers and inform the carrier couples just before marriage is not enough in preventing birth of thalassemic babies due to poor health literacy of the individuals. Family physicians, academicians of the medical schools, professionals aware 253

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 Health Literacy From a Pediatrician’s Perspective

of the health problems of the community and preventive medicine must be among the authors and the editors of the biology text books of the fundamental education. Health literacy study of America was performed with 19,000 adults representing 222 million adults of the country. As expected, this study demonstrated close relationship between the general literacy and the health literacy. Detailed health-care assessment material was embedded in 152 tasks in 3 health-care domains: clinical medicine, preventive medicine and the navigation of the healthcare system. The study showed that 36% of the adult participants had basic or below basic health literacy skills. Adults aged 25-39 showed the best performance whereas more adults aged 65 and older showed below basic or basic health literacy skills compared to the younger participants. Study also showed that as education level decreased, people used less printed material (brochures, books, magazine, newspaper and internet) as a source of the health information (Kutner et al, 2007). Insurance forms, consent forms, and the medication instructions are often very complex for people even in the intermediate level of prose literacy. They must be very simple and clear even for people with low literacy. People should keep appointments for hospital visits and find their way in a busy hospital. Patients should have enough communication skills to express themselves, to tell the physician his complaints, history of the disease and administered treatment. They should ask questions to healthcare professional to understand and clarify homecare of the disease. They should have enough skills to fill out health insurance enrollment and to understand the informed consent forms. People should reach the accurate health information on the internet or in periodicals and books and they should filter the knowledge on health issues and should be aware of the reliable websites. Written material on health issues should be available in all languages of the targeted population. These materials or videos should cover the needs of people with hearing and vision disabilities. Hospitals should even employ translators for verbal communications of minorities with health care providers.

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Individual’s Income and Health Insurance Health literacy study (Kutner, Greenberg, Jin, and & Paulsen, 2008) showed that health literacy skills were low for those living below poverty. Poverty is an obstacle to access school education, internet, and printed media and sometimes to the health-care providers. Individuals with low general literacy, but high income have better access to experienced specialists and have more opportunity for prolonged visits where they could have a chance to receive more detailed explanations about their disease and more of their questions can be answered. Access and interest to the television broadcasts is more common among people with low literacy and low income compared to the printed media. If TV is used optimally for training, it may improve health literacy of these people. But at this point, media literacy is important. Media literacy is individual’s ability to access, evaluate, and analyze the broadcasts, the news and to raise the right questions about what he is watching, reading or listening to. If people have health insurance they visit physicians more frequently and have more chance for communication with health care professionals. This will improve their overall health and health literacy. If one has health insurance, she can visit the physician every month during pregnancy or can take her baby to the pediatrician every month during infancy for follow-up of growth and the development of the baby. For people with low or intermediate literacy level, face-to-face recommendations of the health care professionals are more effective for the health literacy and the outcome of the chronic diseases.

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 Health Literacy From a Pediatrician’s Perspective

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Government Policy for Health Promotion, HealthCare Organization, and Health Insurance Prevention of the communicable diseases, promotion of the maternal and child health, promotion of vaccination, preventing of substance misuse, promotion of healthy life styles and prevention of the obesity are among the main global health issues. Easy access to the primary health care (family health physicians) is important for preventive medicine and for communication of the individual with local physician in health issues. Number of the active physicians and their dissemination in the country is effective in health literacy and health care. Statistics show that over 45% of the World Health Organization (WHO) Member States report to have less than 1 physician per 1000 population. Number per 1000 population is about 2.6 in the USA and Canada, 8.1 in Cuba, 4.6 in Greece, 4 in Italy, 5.3 in Sweden, 1.7 in Turkey, 1.1 in Iran and 0.7 in India. (World Health Organization, 2019a). In addition to inequalities between countries, dissemination of the practicing physicians throughout country shows great variation. To overcome this problem, in Turkey, physicians are obliged to give service in less developed regions of the country for some years. Shortage of time for communication and diagnosis during outpatient visits causes a vicious cycle increasing frequency of the patient visits. Over 60% of WHO Member States report less than 4 nursing and midwifery personnel per 1000 population (about 25% report to have less than 1) (World Health Organization, 2019b). In some chronic diseases like diabetes specialized nurses are required in patient training about diabetic diet, blood glucose measurements, insulin administration and management of the hypoglycemic episodes. Many European countries provide national health care for all their citizens. This will improve public health, prevent early disability and even death but the risk of utilizing health resources more than necessary exists. To overcome this risk in Turkey, people are obliged to pay about 1-2 Euro for every visit (except family physician visits) plus 10 to 20% of the cost of the prescribed drugs in outpatient visits. In every hospitalization except for emergency care, intensive care and cancer, patients also have to pay a fixed price. In 2001, Health Promotion Board, a government organization for promotion of healthy living was established in Singapure. To achieve a healthy nation, they built partnerships with individuals, private and community sectors, schools and healthcare providers. Aim was to prevent illness, disability and premature death. Programs for encouraging healthy workplace as ‘’Singapore health award competition’’ were implemented. ‘’Healthy Lifestyle Festival Singapore’’ has been performed every year. There were programs for healthy eating and drinking, preventing substance abuse, immunization and regular health screening for different age groups and for chronic illnesses (diabetes, hypertension) and cancers. Physical activity programs and ‘’FREE 12-week weight-loss program’’ for overweight and obese through self-monitoring via the ‘’Healthy 365 mobile application’’ are available (Health Promotion Board, Singapore Government, 2019). Health literacy is closely connected with primary health-care organization. Private-sector introduces new and expensive health technologies and biological agents. Pressure of the private stakeholders on the health system causes reservation of the money for medical care thus public health and primary care is in some way may be neglected. Sufficient health care professionals, technological, and financial resources should be reserved for primary health care. It is declared by WHO Director-General in 2017 that ‘’The enjoyment of the highest attainable standard of health is one of the fundamental rights of every human being without distinction of race, religion, political belief, economic or social condition” (Ghebreyesus, 2017). 255

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 Health Literacy From a Pediatrician’s Perspective

Main Topics of the Health Literacy and Preventive Care

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Prevention of the Communicable Disease Vaccination is an important issue of the primary care. The Expanded Program on Immunization (EPI) was established in 1974 throughout the world to fight against diphtheria (D), pertusis (P), tetanus (T), poliomyelitis, measles and tuberculosis. In that age, in developing countries less than 5% of the children were receiving a third dose of DPT and poliomyelitis vaccines in their first year of life. By this program thousands of measles deaths were prevented. Maternal immunization program decreased deaths due to neonatal tetanus (Keja, Chan, Hayden, & Henderson, 1988). It is reported that in underdeveloped regions of the world children of the mothers that delivered at home and unaware of the importance of immunization missed routinely recommended childhood vaccines. The immunization status of each child should be updated at every contact with the health care system. In missed opportunities, immunization practice of the nurses and the physicians is very important. (Malual, Jowi, Irimu,& Admani, 2018). Global vaccination coverage remains at 85%. An additional 1.5 million deaths could be avoided, if immunization coverage improves throughout the world. In current reports of the WHO, polio has been stopped in all the countries except for Afghanistan, Pakistan and Nigeria. Polio-free countries have been infected by the imported virus, and all the countries – especially those experiencing conflict and instability – remain at risk until polio is fully eradicated. Maternal and neonatal tetanus persists as public health problems in 14 countries, mainly in Africa and Asia. (World Health Organization, 2018a). Despite these facts and increasing traveling facilities and immigration, in the 21st century a trend for vaccine hesitancy or refusal has emerged in the developed countries. Hesitancies are due to religious reasons, personal beliefs, safety issues, and a desire for more information from healthcare providers because they are unaware about vaccine preventable disease and benefits of the vaccines. The reasons reported by the parents for refusal are acute adverse events like fever, learning disabilities that vaccines may cause and due to production process. Measles, mumps, rubella (MMR) vaccine was produced in cell cultures derived from human abortion material. Medical abortus is not accepted due to some peoples’ beliefs. People should be informed that the cell lines were taken from one or more fetuses aborted almost 40 years ago by the decision of the parents and no abortions were performed with the aim of vaccine production; then their attitude may change. Disinformation of the media or of religious brotherhood also causes vaccine refusal. Some Muslim people believe that vaccines contain pork protein or vaccination causes infertility or collapse of the immune system. Some religious brotherhoods and newspapers also release such knowledge without giving evidence. In some internet websites it is reported that some enemies give harm to nations by exporting harmful vaccines. Even a pediatric immunology specialists claim that vaccines are responsible from increase of allergy, autism and some autoimmune disorders in the community and to persuade the community he reports that his children are very healthy without any vaccination (Yıldıran A, 2018). Physicians should explain disaster of polio epidemics before global vaccination. (Gresham, Joseph, Farber, & Silverman, 1962; Molner, & Agatha, 1960). Global polio eradication program was started in 1959 and supported by WHO, United Nations International Children’s Emergency Fund (UNICEF), Rotary International, ABD Centers for Disease Control and Prevention (CDC). It is very easy to reject such vaccines after these life threatening infections have been already eradicated or controlled with vaccination and herd immunity. Oral polio virus vaccines and inactivated polio virus vaccines have reduced the incidence of poliomyelitis, with only 74 wild-type poliomyelitis 256

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 Health Literacy From a Pediatrician’s Perspective

cases worldwide in 2015, restricted to Afghanistan and Pakistan (Global Polio Eradication Initiative, 1988). In addition to having good communication skills, health professionals should be well trained about vaccine history and life threatening outbreaks and inform people about these disasters to encourage vaccination. Face to face communication is the most effective way of health literacy. Vaccination should be in the program of the primary education. Students should be aware of the complications of these vaccine preventable infections. Booklets should be performed about vaccine preventable disease and should be delivered to the families by family physicians. TV broadcasts also should be used for training the community. There must be TV programs about prevention from contagious disease, isolation of the patients with infections, importance of hand-washing and preservation of the food.

Awareness About Common Infections and Their Management Common infections must be in school programs. Students must be familiar to the symptoms of common viral upper respiratory infections and gastroenteritis. They should gain skills to take a patient’s temperature and evaluate if it is abnormal. People should be informed by the family physicians about supportive care in upper respiratory infections and gastroenteritis. People must be informed about alarming symptoms and findings that require urgent care. Antibiotics are life saving in many bacterial infections but CDC reports that more than half of all the antibiotics prescribed are not necessary (Center for Disease Control and Prevention, 2018). Colds and flu are viral infections but people insist for antibiotics and generally they believe that, they will recover in a shorter time when antibiotics are prescribed. Many parents even accuse pediatricians when they did not prescribe antibiotic to a febrile child. Even this attitude of the physicians may be a reason for exposure to violence by the parents (Ersoy, 2018). Inappropriate antibiotic usage not only increases medical costs but lead to antibiotic resistance which means we will have no weapons to fight against infections. Bacteria develop resistance to overused antibiotics by changing their genetics. There are some facilities in USA as ‘’Be Antibiotics Aware’’ which is a national effort to help to fight against antibiotic resistance and improve antibiotic prescription and use. People must learn that they should not take antibiotics that were prescribed for someone else or left over from a previous infection. They should not also withdraw prescribed antibiotics early. They should not insist their physician for prescription of antibiotics. Many healthy children or adults without an underlying chronic health problem will recover ear infections and bronchitis without antibiotics because viruses almost always cause these infections (Yvette & Terrie, 2004). Governments control over access to antibiotics is also required. In many countries these drugs are available only after prescription of the physicians.

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Promotion of Healthy Pregnancy Vitamin, folic acid, calcium and iron supplementation is recommended during pregnancy. Folic acid supplementation is recommended to women in childbearing age to prevent spina bifida and other neural tube defects of the babies. (Milunsky, 1989). Pregnant women with iron deficiency have increased risk for a preterm delivery or delivering low-birth-weight baby. Screening for anemia in the first trimester and supplementation with iron throughout pregnancy and encourage women to eat iron-rich foods is recommended (Center for Disease Control and Prevention,1998). During pregnancy maternal calcium intake should provide maternal daily requirement and also demands of growing and developing fetus. Calcium supplementation in pregnancy has the potential 257

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 Health Literacy From a Pediatrician’s Perspective

to reduce hypertensive disorders during pregnancy. Prevention of low bone mass and osteoporosis is recommended for a healthy mother and baby. Calcium is also important for muscle contractility and to prevent post-partum hemorrhage (Kumar, 2017). Web sites of national health authorities, family physicians, TV broadcasts, written media should be used for training of women and men in childbearing age. Family physicians and midwifes should followup pregnant women and prescribe folic acids, calcium and iron.

Improving Maternal Health This is one of the millennium development goals of the UNICEF. Each year about 529,000 women die from complications of childbirth. Majority of these women live in developing countries. Maternal deaths are due to post-partum hemorrhage, infection, obstructed labor, and hypertensive disorders of pregnancy, and complications of unsafe abortions. About 8 million babies die before or during delivery or in the first week of life in every year. Maternal nutritional deficiencies cause low birth weight and birth defects in babies. Malaria and human immunodeficiency virus (HIV) threatens babies’ life. Lack of antenatal care causes untreated hypertension and iron deficiency. UNICEF tries to start antiviral treatment to parents to prevent mother-to-child transmission of HIV. Getting girls to school for six years or more improves their prenatal care, postnatal care and childbirth survival rates. UNICEF reports that ‘’education is good medicine for children and mothers’’. In sub-Saharan Africa and South Asia millions of births are not assisted by a midwife, a doctor or a trained nurse. In addition to midwife assistance in every labor, transport to referral service should be available for obstetric optimal care in emergent situations. (United Nations International Children’s Emergency Fund, 2003). School education and antenatal training of pregnant women by primary care staff will improve maternal health in developing countries.

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Promotion of Breast-Feeding Breast feeding is the best way of nutrition for babies. In addition to supplying enough nutrients with optimum protein, carbohydrate, lipid, mineral, vitamin and water, breast milk has biological properties that support the baby immunologically and psychologically. It has distinct bioactive molecules that protect the baby from infections. It contributes to the immune maturation and healthy microbial colonization. It supplies all the nutrition needs of a baby in the first 6 months. In the 6th month weaning should start but breast feeding should continue at the first and second year. During breast feeding contact between mother and baby is a very important function for emotional needs of the baby. Breast milk is the gift of the nature to the baby and mother and every baby has the right to be nourished with breast milk. It protects the baby from infections and contributes to the survival even in disadvantageous environment conditions. It reduces the risk of asthma, obesity, type 2 diabetes, ear and respiratory infections, sudden infant death syndrome and gastrointestinal infections (diarrhea/vomiting). It decreases the risk of high blood pressure, type 2 diabetes, ovarian cancer and breast cancer of the mothers. CDC encourages obstetricians, pediatricians and nurses to educate new mothers about breastfeeding. In European Union employers create places to pump and store breast milk. Flexible work hours, and maternity leave benefits (financial support in place of a parent’s salary, and is paid for 28 weeks in European Union) also encourage breast feeding (Ballard, & Morrow, 2013). For successful breast feeding, mothers should be trained for using right technique and psychological support must be given for self-confidence abut feeding the baby with their milk. 258

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 Health Literacy From a Pediatrician’s Perspective

WHO and UNICEF started a global program to support successful breast feeding. This is baby-friendly hospital initiative and hospitals should adhere to the following steps (World Health Organization, 2018b). There are limitations in marketing practices of the breast-milk substitutes. Training of the obstetrics and pediatrics staff to support breastfeeding, having written infant feeding policy, training of the pregnant women, limitation of the foods and fluids other than breast milk, providing mother and infant’s remaining together in 24 hours a day, counseling mothers about risks of feeding bottles or pacifiers and coordination of discharge after enough time for support of breast feeding are among these steps.

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Healthy Eating and Obesity Obesity is a health problem of the modern world. It is a global epidemic. There is more than 2% increase from 1975 to 2015 in the world’s body mass index (BMI). This increase is 4% in the United States. To find solutions to the problem the first step is ‘’defining obesity as a disease’’. Lack of obesity treatment training of health care providers is an important problem that must be solved. It is known that globally more than three fourths of the adults do not perform physical activity recommended to prevent obesity. There must be safe environments for physical activity in daily life. Schools should have physical activity programs. People should give up eating ultra-processed foods, instead cook themselves and traditional habits should be preserved. Some time and energy should be spent to cook food. Home -made food is consumed by sitting down the table rather than eating while watching TV or doing other work. All processed food should have clear, front-of-package labeling, demonstrating calories, additives and saturated fat. Warning labels can be used. Food industry developed a labeling system which is hard to understand. Increasing taxes in sugar-sweetened beverages might decrease their consumption. Globalization of the food supply contributes to the obesity epidemic. Obesity is defined as a BMI greater than 25. People should learn how to calculate the body mass index, importance of waist circumference and should be aware of their ideal body weight. They should be aware of the obesity complications as increased risk of heart disease, type 2 diabetes, stroke and certain types of cancer. It is also harmful for the joints (National Health Service, UK, 2018). Animal derived protein sources are more expensive than fat and carbohydrates. It is clear that main causes of the obesity are dietary pattern and physical inactivity. Some endocrine problems as hypothyroidism, genetics and epigenetic (change in gene expression due to change in life style) are contributing factors. To lose weight, people generally search for a magic and easy solution instead of eating homemade healthy food, getting lower calories and increasing physical activity. People purchase some underthe-counter drugs from the digital market to lose weight and these substances might be toxic or lethal. Some false diets are also released from media. Walking is a good physical activity. Cities should be bikeable. National strategies should be developed for awareness campaigns using media. There must be easily accessible obesity clinics in government hospitals. For healthy nutrition and prevention of the obesity there are many guidelines in websites; examples are websites of CDC and Department of Agriculture of USA. They show food groups (proteins, carbohydrates, dairy products, vegetables, fruits, vitamins and minerals), daily requirements for different age and sex and even have some quizzes for training. They explain healthy nutrition in a clear and simple way. (The National Academies of Sciences, Engineering and Medicine, 2019; Center for Disease Control and Prevention, 2019b; Food and Nutrition Service, US Department of Agriculture, 2019)

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 Health Literacy From a Pediatrician’s Perspective

Prevention and Early Diagnosis of Cancer Comprehension of written and spoken health messages about cancer is the first step in people’s behavior for cancer prevention and screening. Prostate cancer, breast cancer, colorectal cancer and cervical cancer are subject to screening. Serum prostate specific antigen and rectal examination, mammography and physical examination, colonoscopy and cervical smear are the screening methods. Videos in mass media, news in printed media, face-to-face interviews of physicians and peer leaders of civil organizations should be used to warn people about early diagnosis. Easy-to-read educational materials and videos using plain language, avoiding medical jargon should be developed. The teach-back communication method is effective in increasing comprehension of the people (Simmons RA, et al, 2017)

Sexual Education Traditional sexuality education mainly focused on biological approach and preventing sexually transmitted infections or unwanted pregnancy. But in European Union this concept also comprises human rights (Westeson, 2013). Young people can make informed choices about sex and relationships and learn to respect others’ choices. Enjoyment of sexuality is important, it is not only a function of reproduction and it should not be perceived as guilt. This education must begin in primary school and continue through all the levels of formal and informal education. Otherwise adolescents may get the information from unreliable sources. For sexually transmitted infections as HIV, multiple partnership, sex between men and with sex workers are risk behaviors. Later marriage in developed countries has increased the prevalence of premarital sex (Wellings et al, 2013). Condom usage for safer sexual behavior should be encouraged. Double standards of the community exist in the perception of sexual behavior in many countries of the world. In Tailand ‘’National AIDS Education and Condom Promotion Campaigns’’ used the mass media and workplace programs. Condoms were made freely available.

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Prevention of Tobacco, Alcohol, and Drug Abuse Drug abuse is a global disaster. In 2016 it is reported that about 275 million people used illicit drugs at least one. In 2015, 450,000 people died as a result of drug use. Opioids, cannabis, cocaine, synthetic drugs, inhalants (paint thinner, glue) threaten lives of adolescents and adults. Initiation age to these drugs is as early as 12 years. Peak period for substance use is 18–25 years. Ecstacy, methamphetamine, cocaine, ketamine, liserjic acid diethylamid (LSD) and gama-hydroxybutyrate (GHB) are used in highincome societies for entertainment. They are club drugs but they are available in college bars and house parties. Street children who are exposed to physical trauma and sexual abuse use inhalants to cope with their difficult circumstances. Lack of parental or social support, sexual abuse, negative school climate, poverty, mental and behavioral health problems, peer substance use are all risk factors for substance use of adolescents. Women tend to use tranquillizers and opioids after post-traumatic stress or due to risk factors in childhood or adolescence. In the U.S benzodiazepines and other tranquilizers were among the most commonly misused illicit or prescription drug (United Nations Office on Drugs and Crime, 2018; Votaw, Geyer, Rieselbach, & McHugh, 2019). In prevention of the drug abuse, family, school authorities, civil organizations, government authorities should be in close collaboration to eliminate risk factors for the initiation of the drugs. Incidence of 260

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 Health Literacy From a Pediatrician’s Perspective

sexually transmitted infections as HIV and hepatitis C are also high among these people and spread of these infections is also a serious problem. Efforts to decrease sexually transmitted disease by training about changing sexual behavior decreased HIV prevalence among young people (The Joint United Nations Program on HIV/AIDS, 2010). Training of teens about adverse events of these drugs, administration of antidotes, prevention of overdose is important in decreasing mortality. Training for awareness about contamination route of HIV and hepatitis C is also essential to prevent spread of these infections among these people and community. Wars, terrorism, and unemployment creates suitable environment for cultivation of illicit plants and their production and trade. The use of illicitly supplied tramadol, a synthetic opioid used to treat moderate and moderate-to-severe pain expanded in Africa and Asia. Parents should be informed by school authorities and media about the problem and they should be aware of the effects of these drugs on adolescents’ behaviors. Parents should control the relationships of their children and places they visited and try to spend more time with them. There are also peer to peer prevention programs and other activities as poster contests at schools (Addiction Campuses Blog, 2018). Programs developed about the “demand reduction” and “supply reduction”. Lectures to large audience about harmful effects of drugs were not effective. Teaching should be interactive and peer leaders should be used. To make teenagers aware of the tactics employed by the tobacco industry to encourage young people into smoking was an effective strategy. Adolescents do not like to be manipulated and try to be resistant to the strategy of the industry. For prevention of alcohol and tobacco use, role plays, simulations, brainstorming, small group activities, and class discussions are effective (Ranaweera, & Samarasinghe, 2006). Multidisciplinary approaches are required to provide social needs of young people. Saving children from the dangerous environment of the streets, providing young people with skills, giving opportunities for education and employment are essential. Prevention programs, treatment interventions for drug use disorders, rehabilitation programs to establish positive relationship of young people with their families, schools and community are required.

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Preventing Home Accidents Children carry high risk for unintended poisoning in the home setting. For prevention of poisoning parents should keep all medicines, rodenticides, dishwasher machine powder, and oven and grill cleaners well out of reach of children. For prevention of children from electric shock safety plug socket covers should be used. Aspiration of food is another hazard both for infants and toddlers. Toddlers generally are not able to consume nuts safely. In addition to food allergy, there is risk of aspiration which means food goes to the trachea and bronchus instead of esophagus. This leads to sudden coughing attack, cyanosis, sometimes dyspnea, athelectasis (partial collapse of the lung) and pneumonia. If the parents are aware of this issue they will ask for emergency-care and give aspiration history to the physician. Obstruction of the trachea completely by the foreign body causes sudden death with asphyxia or even if the patient is resuscitated it may cause loss of brain functions due to hypoxia. Foods with small pits as olives, grapes and cherries are also risky when served to infants and toddlers without removing the pits. Also hard candies are not allowed to infants and toddlers. Toddlers generally aspirate nuts, small pieces of toys and small batteries. Parents should be warned on these issues by the pediatricians, family physicians and mass media. For adults also, eating in a quiet area, limiting talking, sitting upright during eating, chewing well, not using straws while drinking, drinking from cups instead of cans and avoiding rush while eating is

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 Health Literacy From a Pediatrician’s Perspective

recommended. Foods of more than one texture as vegetables or meat in a soup are also regarded risky for aspiration. Grinding the vegetables in soups is recommended (Capital Health, Nova Scotia, 2013).

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Workplace Health Promotion Healthy and safe environment in workplace, pollution and exposure control and health screening are essential for healthy workers. Healthy workers will be more productive and will raise healthy families. Silicosis disaster in denim sandblasters was an example for poor working conditions. It caused progressive dyspnea, fatigue, weight loss in young workers. Progressive respiratory dysfunction was the result of deposition of silica particles in the lung alveoli and terminal bronchioles. It is incurable but preventable by controlling exposure to silica. Workers died after about 6 years of exposure just to manufacture more fashionable jeans. Projecting sand on denim was a cheaper and quicker technique that can be performed by unqualified workers and even by teenagers. To soften the fabric and provide a more worn and faded look is fashionable. Alternative methods, such as the use of sandpaper or brushes were not used (Baş., Baeer., & Nuge, 2016). Workers and worker unions must be literate about potential toxic or dangerous exposures in workplace. Capitalism may induce poor business ethics. Animal right activists were very effective in prevention of killing animals for their fur. Activists protested celebrities who wore fur by using media (Ranker, 2019). This started a trend for wearing coats produced from synthetic materials instead of fur. If worker unions also could provide such activities to protest projecting sand on denim, this may put pressure both on the employers and people wearing faded look jeans. Occupational health and safety technicians should train employers and workers for physical, biological and chemical hazards. In the hospital setting, staff is exposed to many infections and other hazards even to radiation exposure. In 2003, in Toronto after hospitalization of a patient with respiratory symptoms 69 health care workers were exposed to unexpected exposures of severe acute respiratory syndrome (SARS). They were quarantined and SARS developed in 7 of them. In addition to direct contact with person’s skin or mucous membranes, the infection transmitted by large droplets. Intubation of the patient was very risky for the staff. After this disaster, in addition to wearing gown, gloves, N-95 masks, protective eye wear was started for patient encounters (Scales D.C et al, 2003). Hospital staff should be trained on these subjects. Health care workers may be injured accidentally by needles infected with a hepatitis B or HIV carrier’s blood. Vaccination and periodic screening of the hospital staff is important. In addition to strategies to prevent such injuries staff must be trained about waste management. There are many high- risk wastes in the hospitals. Pathological waste (amputated extremities or excised organs), sharp waste, pharmaceutical waste (anti-cancer drugs), genotoxic waste, chemical waste (disinfection solutions) and even radioactive waste. Staff should be aware of the absorption through a cut in the skin, through the mucus membrane and through inhalation or ingestion. Waste segregation guidelines are developed. Segregation at source minimizes the chances of infection and injury to the persons who handle the waste. Safe waste and risky waste all have different colored plastic containers or bags. Staff should be trained for using the right waste box. Training is essential for safety of both health care workers and patients. To prevent hospital infections, hand-washing training of the staff is important because hand contact of the staff is an important vehicle for transmission of infections from one patient to another. Regular training of the staff and audits will improve occupational health and safety management.

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 Health Literacy From a Pediatrician’s Perspective

Factors Effective in Improving Health Literacy of the Individual and Community

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Communication of Patients With Health Professionals Physicians and nurses should be trained for improving verbal communication skills. Training of physicians in communication skills is generally missing in pre and post-graduate setting. Health care professionals must not only be aware of prose literacy level of the patient but their culture, traditions and beliefs. Pregnancy termination is generally not accepted in Muslim populations when a prenatal diagnosis detects congenital malformations or chromosomal abnormalities that will cause morbidity or mortality. In this situation preimplantation genetic diagnosis seems more practical. Physicians should also try to give recommendations considering socioeconomic status of the patient. For child nutrition, physician should recommend cheaper protein sources to poor mothers. Health care professionals should use plain language, “teach back” and “show back” techniques to assess and ensure patient understanding, limit information provided to two or three important points at a time, use drawings, models or devices to demonstrate points and encourage patients to ask questions. Patients must be informed about all of their medications, diagnosis, test results, plans for follow-up, important side effects of the medication and alarming symptoms of adverse events. They must be integrated to the treatment plan. (The Joint Commission, 2007). It is a fact that the patients either do not understand fully or forget most of the information and recommendations given during office visit. In the teach-back method, health care professionals ask the patients to explain what they understood from the explanations. This is a good way of confirmation that the explanations are clear enough and had been received by the patient. When patient explains in his own words instead of parroting the physician, this shows that the patient has fully understood. In show-me method, patient is asked to show for instance measuring blood sugar or injecting insulin. Some methods are developed to increase understanding of the patients at all literacy levels. (Agency for Healthcare Research and Quality, 2018). During discharge from the hospital a clear document (about medications that must be used at home, dosages, next visit date, outreach calls) must be given to the patients. Some simple pamphlets or drawings of physicians are very helpful. Shortage of physicians and time limitations in the government hospitals is an obstacle for oral communications especially in emergency care units and out-patient visits. Patient school programs and patient-centered education materials should be developed for chronic diseases as diabetes, hemophilia, cystic fibrosis and immunodeficiency. Waiting period and limitations in communication causes patients’ verbal and physical violence to physicians and nurses. Clinical research is essential to offer new drugs to the patients’ treatment. Enrollment of the patients to these studies and completing the study requires good communication skills of the investigator and good health literacy of the volunteer. Patients should be informed clearly before any invasive procedure, test or any medical treatment. Using medical terms should be avoided; if necessary medical terms should be explained. Written informed consents should be obtained. In teaching hospitals residents who are already inexperienced in the medical practice and communication with the patients or their guardians are tired due to long working hours up to 24 hours or more. Their career development anxieties, workplace stress, fear of malpractice and unsatisfied salary expectations cause feeling burn-out and depressed. Overcrowded emergency units, lack of enough supporting staff, unsatisfactory waiting rooms impair communication between patients and physicians. Patients’ expectations and rights are exaggerated by the health authorities and they are encouraged to blame health pro263

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 Health Literacy From a Pediatrician’s Perspective

fessionals for every negative outcome of the diseases. Physicians are even exposed to patients’ violence (Sağlık Sen Stratejik Araştırma Merkezi,’’Health Union Research Center, 2015). In USA physicians complain of ‘’too many bureaucratic tasks’’, “spending too many hours at work,” and “increasing computerization of practice’’ (electronic health records). Growing number of quality programs and demands of private insurance companies increase clerical work and decreases professionals’ time they will spend to treat their patients. Some healthcare systems adjust physicians’ income based on productivity. This leads to overwork, sleep deprivation and causes burnout and decreases quality of the patient care (Reith, 2018). Long working hours increase female professionals’ stress more because they commonly manage household work and care with children in addition to their professional responsibilities. If they are residents or academicians in the University Hospitals they have to accomplish their carrier and continue post-graduate training. Fear of malpractice and working in the settings where patient mortality is high (intensive care units) increase physicians stress. To improve physician-patient communication, health literacy of the patients and patient care, mentally and physically healthy health-care professionals are essential. Problem of shortage of physicians and nurses should be solved to improve quality of communication between patients and staff. If enough medical secretaries are employed for clerical work, physicians and nurses will have more time for communication with the patients.

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Print Media, Broadcast Media, Internet, and Health Literacy In the digital age, global usage of smart phones gives people chance for access to health information 24 hours a day. Some films and TV series may give wrong messages to the people that will increase their expectations from physicians and nurses. People watch on the screen that as soon as they approached to the entrance of the emergency unit, doctors and nurses will be waiting in front of the door and they will take the patient directly to the operation room. In fact this is not the procedure. Staff is busy with other patients in the unit and patient should be physically examined, history of the patient should be learned, blood samples should be drawn, imaging studies might be required, and even supportive care might be necessary even if the patient has appendicitis or any trauma that requires operation. Blood group, coagulation studies, blood counts and blood chemistry are essential tests before operation procedures. In addition, some fluid infusion and supportive care may be required. In many TV series, children have leukemia and the first treatment approach is searching a stem cell donor and planning hematopoietic stem cell transplantation. But in fact the routine initial treatment approach is chemotherapy and only minority of the patients also require transplantation as second line treatment or when leukemia relapse develops. Although there are many benefits of media, the false information may cause real problems in health literacy. A massive rubella outbreak emerged in United States in 1964. A Time magazine article encouraged rubella parties, so that especially all the little girls would get the infection before pregnancy. But due to the undesirable exposure of pregnant women to the infected children despite warning, nearly 50,000 pregnant women got infected. Outcome was thousands of miscarriages and 20,000 congenital rubella syndromes. Outcome was more than 8,000 deaf, 3,500 both deaf and blind children and billions of medical costs. (The College of Physicians of Philadelphia. History of Vaccines, 2018) In addition to poor access to healthcare, vaccination refusal due to news depending on unproven information about vaccine safety caused measles outbreaks in some European Union countries between years 2005-2009 (Muscat, 2011). A measles outbreak due to refusal of vaccination of children also started in October 2018 in New York and 764 cases were reported until the first week of May 2019.The 264

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 Health Literacy From a Pediatrician’s Perspective

earliest source of information about severe adverse effects of vaccines was the publication in an important medical journal reporting that measles, mumps, rubella (MMR) vaccine cause autism. This report was depending on families’ observation of only 12 children (Wakefield et al, 1998). After two years following the judgment of the UK General Medical Council’s Fitness to Practice Panel on Jan 28, 2010, the paper was retracted due to several incorrect elements in the paper. Media may cause dissemination of such knowledge without critical approach and may be harmful for public health. All TV channels or newspapers must have medical consultants for filtering and edition of health news. In this point media literacy is also important. Reader must ask some questions and should not easily believe all the comments on the internet. Is the website reliable? Is the main aim of this website to get attention and to sell a product with colorful advertisements, flashing graphics, pop-ups and video? It is very important to look at the site’s Uniform Resource Locator. For example, .’’gov’’ is an official government website and the information on these sites are reviewed prior to posting. University and school sites are identified by ‘’edu’’. These websites have established standards for posting information and they are reliable. Cancer is not always curable with current medical treatment methods. There are many advertisements on the internet or printed media about some plants that cures cancer. Patients with cancer generally need hope and use these plant extracts. They even use these plants during medical treatment and may suffer from some organ toxicities. Health authorities may give some useful messages about health in the printed media or TV broadcasts. If these effective communication tools are used optimally messages and training programs will reach to large number of people. But all public service announcements must be produced meticulously, because they may cause unintended perception of the audience. In a TV broadcast which aimed to remind people to visit their local primary health care physicians, there were no patients in the waiting room and physician was welcoming his patient shaking hands, addressing with patients’ name and saying ‘’We were waiting for you, Mr......’’. But in the real life offices of the primary care physicians are generally overcrowded due to the large number of patients per physician and people have to wait for a long time. These unreal TV programs and advertisements increase patient expectations and decrease their patience while waiting. They enter physician’s room in a nervous manner and are ready for a violence attack against healthcare workers. (Medimagazin, 2018). Such violence tendencies are parallel to the increasing violence to women, to children and to any people in the community. In Turkey in 2012, government had to establish an emergency code system, ‘’white code system’’, for the healthcare professionals to use when exposed to patient or patients’ families violence. This system is planned also to give judicial support to the health care professionals (Sağlık Bakanlığı, ‘’Ministery of Health’’ 2012). There is an emergency call number - for the staff. Patients also should be trained for developing good communication and showing empathy to the health care professionals. Negative behaviors generally do not come from chronic patients who frequently visit the same center. They generally appreciate the service and have respect for the physicians and nurses. On the internet, there are websites of some institutions with programs named ‘’symptom checker’. When the symptom is chosen from the list and age and sex is recorded, the program gives the list of all the diseases related to that symptom. This generally causes unnecessary anxiety in the patients due to the long list of differential diagnosis ranging from simple, common conditions to cancer. One can even get appointments for physicians of the institute from these websites. This is a way of marketing medical service. Physicians have to convince the individuals most of the time that there is nothing serious about their health by ordering unnecessary tests and imaging studies. Such systems encouraging self diagnosis

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 Health Literacy From a Pediatrician’s Perspective

could be harmful for the patients. Patients should be encouraged to read from reference sites about their disease after the diagnoses is made by the physician. Internet can be successfully used for health literacy. For improving digital health literacy skills in Europe, a European Union Project was developed. This is a website (https://ichealth.eu/) for training people how to seek reliable health-related information. Website trains people in eight languages. Massive open online courses are developed for this purpose. It has offline and online co-creation activities for improving the courses (Europe IC-Health). Food Industry also use digital media for marketing food supplements to healthy people. People and even physicians consider that they are drugs. Manufacturers are not obliged to demonstrate efficacy and safety of these products. Food supplements do not have pharmacological, immunological or metabolic activity as drugs. In European Union and USA, they are regulated as food. Food supplements are vitamins, minerals, amino acids, essential fatty acids, fiber and various plants and herbal extracts. They are easily available and internet advertisements are very attractive. But the users must be careful about tolerable upper intake levels in chronic use. In a study performed in the US armed forces staff to detect the side effects of the food supplements, staff reported that they use multivitamins and minerals, individual vitamins and mineral, protein/amino acid supplement, combination product, herbal supplements, purported steroid analogue and ‘others’. Study objects reported that 7% experienced abnormal heart beats, 6% tremors, 5% stomach pain, 3% dizziness, and 3% numbness/tingling (Austin et al, 2016). About 85,000 unique products are currently on the USA market (Garcia Cazarin et al, 2014). Hepatotoxicity is among many reported side-effects of the food supplements (Peterson et al, 2013). They are not medicine and their safety and efficacy is not evidence-based. Currently probiotics are suggested to improve immunity. They are quite expensive and obviously are not covered by the health insurance. Their contribution to health and dose is uncertain and carefully designed clinical trials are needed in order to make firm conclusions about their benefits. People should be aware of ‘’evidence based medicine’’. After researchers solve the mechanism of a disease in the molecular level, drugs are produced. Efficacy and safety (adverse events) should be studied on animal studies. To work on laboratory animals, researcher must be trained and licensed. Hypothesis about the study drug and method of the trial on the laboratory animals must be approved by the ethical committee. Specialists of the related subject review the study before supporting studies with institution’s funds. If animal studies are successful, clinical studies are initiated. Healthy volunteers and patients sign informed consents for using the study drug. Physicians throughout the world after being trained and licensed for ‘’good clinical practice’’ administer the drug to volunteers. Researchers have to report efficacy and adverse events. Every phase of the study must be approved by the organizations as Food and Drug Association (FDA) in USA, European Medical Association in European Union or Ministry of Health of the countries. ‘’https://clinicaltrials.gov/’’ is an open access website that shows clinical studies conducted around the world. Every medicinal product should complete these phases before being on the market.

Contribution of Civil Organizations for the Management of Chronic Diseases Civil organizations are important in prevention of some diseases and patients’ compliance to treatment. They release some guidelines, booklets, run camps and contribute to increasing life quality of the patients. There are associations for kidney diseases. Their aim is patient education for early detection of disease, increase transplantation and promotion of innovation. They organize summits and congress. Similar or266

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 Health Literacy From a Pediatrician’s Perspective

ganizations are present for diabetes, hemophilia and for some other diseases. Compliance to prescribed therapeutic regimen is an important component of the patient outcome. In patients with diabetes mellitus and congenital coagulation disorders like hemophilia, training activities of civil associations with collaborations of the specialists is important. Sharing knowledge and experience among patients is a real contribution to the compliance to treatment in addition to psychological support.

Contribution of Health-Related Activities in the Work Place to Health Literacy Employers should establish a healthy environment in the workplace. Physician of the institute is effective in providing primary care and health literacy. Healthy nutrition and physical activity facilities should be provided. Employers should offer courses on social competences, as dealing with stress and helping employees to quit smoking. Regular health checks to monitor blood pressure and cholesterol levels should be offered. Daycare facilities should be offered. Government regulations are essential for a healthy workplace.

SOLUTIONS AND RECOMMENDATIONS Projects should be developed to evaluate health literacy level of the community. Some questionnaires should be developed for this evaluation. Associations of family physicians, internal medicines and pediatricians and officials of ministry of education should collaborate in these studies. Health literacy and media literacy programs should be developed for fundamental education and for adult education. Clear documents with basic language and in languages of minorities and videos should be performed. Documents must be in main health issues as immunization, baby nursing, birth control, prevention of obesity, management of common chronic diseases and prevention and early detection of common cancers. These documents should be delivered in primary care centers and hospitals. Municipalities may develop free interactive courses for adults, pregnant women, young mothers and older people. Government websites should be performed for training people in using internet to gain reliable health literacy. Government programs should be developed to increase number of physicians and nurses per capita and their distributions throughout country. Physicians and nurses should be trained about communication skills. Health promotion boards should organize healthy living in schools, community and workplace. Work place physical activity programs and sports organizations should be developed.

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FUTURE RESEARCH DIRECTIONS Research to investigate the relationship between health literacy, use of health care services and cost of health care Research to investigate the relationship between health literacy and health outcomes and mortality Research to develop free patient schools in hospitals to train people with chronic disease like diabetes, hemophilia, chronic kidney disease Research to develop programs of health literacy classes in schools Research to increase communication skills of health care providers

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 Health Literacy From a Pediatrician’s Perspective

Research to simplify printed documents (health insurance policy, informed consent forms, drug labels, drug prescriptions, appointment labels) and develop documents in different languages Research programs to understand patients’ needs to increase their health literacy and to develop education program (questionnaires and open ended questions using qualitative research methods)

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CONCLUSION Health literacy is related to individual factors (general literacy, fundamental literacy and media literacy), organization of health-care system, health coverage, communication skills of the health care professionals and civil organizations for management of chronic disease. Mass media (printed and TV broadcasts) and internet are very effective in behaviors of people on health issues. These tools may be misleading but also may be used very effectively in training people on health issues. People should be trained for filtering unreliable websites. It is clear that good health literacy and training of community on preventive medicine and maintaining compliance for treatment of chronic disease is essential for a healthy life. Governments should try to learn the level of health literacy of the community by questionnaire studies and establish councils that will make plans to improve health literacy of the citizens. Members of the council should be chosen among experienced practicing health care professionals who are aware of the problems and patients’ needs. Preventive care services should be free and easily accessible to citizens. Preventive medicine is always cheaper and more useful than clinical medicine. There must be obligation for vaccination from communicable diseases. In Italy, school attendance of unvaccinated children is prohibited which is a good approach to prevent spread of communicable diseases and to encourage vaccination. Biology text books of primary schools should have chapters on main health issues and should be updated to cover current health problems. Schools should have facilities to prevent children from drug, alcohol and tobacco abuse and to promote healthy eating. Students should be encouraged to participate in sport activities for developing a healthy body. Hospitals and primary care centers should be encouraged to establish patient schools. There must be staff whose duty is only training of the patients similar to nurses whose duty is training new mothers on breast-feeding in baby-friendly hospitals. Booklets with simple and plain language should be developed for patient education on preventive care and chronic disease. Printed media and broadcast media should be obliged to have medical consultants in order to give true information to people on health issues and they should be used for training of the community on health issues. Internet may be audited to prevent spread of harmful news on health issues as marketing under-the-counter drugs. It is obvious that people with good health literacy will have good birth control, grow healthy children and have good compliance in the treatment of chronic disease. Sources of the countries will be used more logically if governments are aware of problems of health literacy of the community and develop politics to improve it.

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 Health Literacy From a Pediatrician’s Perspective

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Center for Disease Control and Prevention. (2019a, May 15). History of the Plague. Retrieved from https://www.cdc.gov/plague/history/index.html Center for Disease Control and Prevention. (2019b, Apr 10). Healthy Food Environments. Retrieved from https://www.cdc.gov/obesity/strategies/healthy-food-env.html Ersoy, İ. (2018, Jan 17). Görüntüler ortaya çıktı! Avukattan antibiyotik yazmayan aile hekimine tekme, hakaret, ölüm tehdidi. Medimagazin, 1. Retrieved from https://www.medimagazin.com.tr/guncel/ genel/tr-goruntuler-ortaya-cikti-avukattan-antibiyotik-yazmayan-aile-hekimine-tekme-hakaret-olumtehdidi-11-681-75896.html

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 Health Literacy From a Pediatrician’s Perspective

ADDITIONAL READING Örsal, Ö., Duru, P., Örsal, Ö., Tırpan, K., & Çulhacı, A. (2019). Analysis of the relationship among health awareness and health literacy, patient satisfaction levels with primary care in patients admitting to primary care health centers. Patient Education and Counseling, 102(2), 376–382. doi:10.1016/j. pec.2018.09.006 PMID:30217576

KEY TERMS AND DEFINITIONS

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Digital Market: Marketing by using internet advertisements and mobile phones. Fundamental Education: Training of children and adults who had no opportunity for primary education (formal schooling in underdeveloped areas). Information Pollution: Spread of low-value, harmfull information. Mass Media: Transmission of information to large populations via printed or broadcast media. Mass media use technologies as films, radio, recorded music, television, newspapers and physical objects as journals and books. Poverty: Not having enough income for a person’s needs. Self-Diagnosis: An effort of diagnosing medical conditions in oneself by using the resources on the internet or books or self-experience. Show-Back: Patient is requested to practice the explained procedure to confirm that he fully understood the procedure. Social Media: Peoples’ interaction and sharing of knowledge using internet-based applications via networks. Teach-Back: A technique used by health-care professionals to confirm that patient has clearly understood the given information. Patient is requested to repeat the given information. Under-the-Counter Drugs: Illegal drugs that are prohibited by law. Universal Health Care: Goverment’s provision of health care to all citizens even if they do not have ability to pay.

This research was previously published in the Handbook of Research on Multidisciplinary Approaches to Literacy in the Digital Age; pages 308-330, copyright year 2020 by Information Science Reference (an imprint of IGI Global).

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Chapter 16

Learning to Live with Chronic Disease: Coronary Artery Disease Lisa Alves Gomes University of Minho, Portugal Gorete Reis Évora University, Portugal

ABSTRACT Cardiovascular diseases are chronic diseases with the highest morbidity and mortality rate worldwide. The high number of hospital admissions for coronary artery disease and the low adherence to cardiac rehabilitation programs constitute an opportunity for nurses to develop educational interventions aimed at health promotion, health literacy, empowerment, and accountability of the patient’s abilities for an effective self-care. Nurses need to understand chronic patient’s priorities and implement patientcentered care considering that caring for patients with chronic disease requires interventions focused on individual human responses. Therefore, the intention of this chapter is to provide an overview of the impact of educational nursing interventions on health literacy and patient empowerment as a method to improve self-care skills that are necessary for dealing with chronic disease.

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INTRODUCTION In Portugal over the following years, changes in mortality patterns and increases in life expectancy combined with health/disease modification of the populations led to an increase in the incidence of chronic diseases and, consequently, an increase of the level of disability of the aging population. Chronic diseases are responsible for 60% of the global burden of diseases, and it´s projected that by 2020 that number could increase to 80% (Bloom et al., 2011; WHO 2017). Population aging, the adoption of unhealthy lifestyles and urbanization contribute to this increase (WHO 2015). In view of this context, DOI: 10.4018/978-1-6684-2414-8.ch016

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 Learning to Live with Chronic Disease

chronic diseases is a major focus of health care and it becomes evident the need to help patients learn to live with their new health condition. Considering that approximately half of the deaths caused by chronic diseases are directly associated with cardiovascular diseases (CVD), it is estimated that 7.4 million deaths are due to acute myocardial infarction and 6.7 million deaths due to the cerebrovascular accident (WHO 2017). These diseases caused by common risk factors, such as smoking, sedentarism, diabetes mellitus, obesity, poor eating habits, hypercholesterolemia, hypertension, and excessive stress. They result in an inappropriate relationship of people with their environment. Despite the implementation of primary and secondary prevention strategies for CVD, the World Health Organization (WHO) predicts that in 2030, ischemic heart disease remains the leading cause of death and a major cause of personal incapacity, loss of productive capacity and quality of life in the world (WHO 2014). Although CVD are avoidable diseases, they continue to affect people that adopt unhealthy behaviors, have low health literacy, and have difficulty or lack of knowledge of how to mitigate/eliminate modifiable risk factors. Citizens must commit to managing their health, however, need professional support to make healthy decisions. Nurses are health professionals who can offer significant contributions in leadership and support to new models of care (Lall, et al, 2018). According to the nature of nursing care, nurses have the skills to understand the process of adaptation. In addition, the strategies used to facilitate the transitions process are relevant to the research area (Meleis, 2010). In the health-disease transition, rehabilitation depends largely on health literacy, adherence to rehabilitation programs and active participation of the person in the management of the therapeutic regimen. However, the development of skills and abilities, behavioral change and lifestyle is a challenge, faced with complex treatment regimens (Roger et al., 2011, Rosamond et al., 2007). The processes of change are not simple because they depend on an accurate initial diagnosis and the development of personalized and individualized patient - center care. It is fundamental that the patient is motivated and involved in the therapeutic regimen, and understand the need for developing self-care skills. People are able to become involved in their self-care, but they need educational support to understand the different aspects of selfcare (Orem, 2001). This educational support is essential for adherence to self-care that is determinant in the management of chronic disease, since it involves much more than taking medication and following a food plan, but also, the adoption of changes in lifestyle. Non-adherence to the therapeutic regimen may threaten effective control of the disease; increase the risk of hospitalizations and mortality (Dantas et al., 2016). In addition, authors such as Inglis et al. (2011) emphasize the importance of health interventions that include education programs and self-care promotion because they demonstrate a beneficial effect in reducing hospital admissions. Hospital readmission is important in terms of cost-effectiveness and undoubtedly has major implications for the individual and for health care system (Dalal et al., 2010). This chapter intends to provide a comprehensive approach to understand the factors that have an important role in the patient’s life so that nurses can implement effective interventions and offer the tools necessary for the patient to learn how to live with chronic disease.

BACKGROUND WHO defines chronic disease as diseases of long duration and generally slow progression that includes pathologies such as CVD, diabetes, asthma, chronic obstructive pulmonary disease, cancer, HIV / AIDS, 275

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 Learning to Live with Chronic Disease

mental disorders, and musculoskeletal disorders that result in some type of disability (WHO 2002). These morbid diseases can go unnoticed for many years because they can result from a hereditary genetic heritage and from lifestyle behaviors. The consequences they cause on a personal, professional and social level are similar, they require long-term multi-professional support; changing lifestyle; complex therapeutic regime management; emotional management; absenteeism and loss of health-related quality of life. Acute Coronary Syndrome (ACS) described as an extremely traumatic cardiac event (Herber et al., 2012) has consequences on physical and psychosocial well-being over a significant period of time (Chauvet-Gelinier & Bonin 2017). Considering that this is a chronic disease and therefore accompanying the person throughout life, in recent year’s research studies seek to understand the implications that the diagnosis, progression, and consequences of the disease have in the life of the person, family, and society. Health professionals, especially nurses involved in post-ACS care, are required to establish education, monitoring, and evaluation strategies so that changes in lifestyle translate into a reduction in cardiovascular risk and better quality of life. In Portugal CVD are the main cause of mortality and studies reveal that low level of health literacy is associated with heart diseases (Nunes et al,. 2016). The person at home or at work may have adequate literacy to function; however, in a hospital environment literacy may be inadequate. Ignorance of the populations can be a major risk factor of CVD.

CARING FOR PATIENTS WITH CHRONIC DISEASE

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Health Literacy WHO (1998) defines health literacy as a set of cognitive and social skills that determine the motivation and individual abilities that enable access to, understanding and use of information in order to promote and maintain good health. It involves acquiring a level of knowledge, individual abilities, and confidence in the decision making to modify behaviors and lifestyles. One of the strategies to improve people’s health literacy is health education. All elements of the multidisciplinary team play the role of educators in the rehabilitation process. However, the proximity of nurses to the patient ensures an essential role in health education and the promotion of empowerment of the person, family and community. After the cardiac event, patients in partnership with the nurse can make informed decisions about their health management. A new intervention model can recognize if the patient has control, capacity and is able to take responsibility for self-management of the therapeutic regimen after ACS. This approach based on patientcentered care and patient empowerment can increase self-care skills needed in the activities of daily living. Authors such as Tol et al. (2015), refer that there is a relationship between empowerment and the increasing involvement of patients in their care plan. Using a collaborative approach and patient-centered training, nurses help make informed decisions according to particular circumstances. Empowerment is a vision that helps people change behaviors and make decisions about their health care (Tol et al., 2015). Health literacy for Ghisi et al., (2018), is the key to empowerment regarding chronic disease. These authors also acknowledge that low levels of health literacy are associated with hospital readmissions, poor health-related quality of life, increased anxiety and less social support. There is a lower understand-

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 Learning to Live with Chronic Disease

ing of diseases with implications for adherence and management of the therapeutic regimen, showing adverse effects on health outcomes and higher health costs (Cajita, et al., 2016)

Patient’s Empowerment Due to the International Conference on Basic Health Care promoted by the WHO in Alma-Ata 1978, the empowerment concept gained visibility. It acknowledges the importance of people taking control and responsibility for their own health. However, only some governments seem to understand the importance in patient’s empowerment and the importance of giving responsibility to the citizens and the communities to maintain and promote health, through measures such as health literacy. Health literacy and empowerment are concepts that are associated and fundamental to help people to develop self-care skills so they can live with chronic disease. Nurses, by creating conditions for learning, give patients information about existing resources, opportunity to participate in decision-making and finally control their health-disease process. The process of acquiring knowledge and developing competencies creates well-informed people, with power and motivation to adhere to and manage the complexity of the therapeutic regime. Health literacy and empowerment influence and determine the form of adaptation, the alteration of behaviors and health practices even more visible in coronary diseases, since modifiable risk factors, such as smoking, obesity, sedentary lifestyle, stress, and the eating habits can be replaced by healthier lifestyles. The nurse as educator and facilitator in this process of adaptation confers an active and controlling role to the person in the management of their health. New demands imply impositions in terms of adherence to a complex therapeutic regimen, acceptance of health status and self-care. According to Abbasi et al., (2018), self-care becomes a promising and effective measure to prevent and treat the disease. Nurses, being aware of this situation, are able to identify the problem, such as low level of literacy, and implement nursing interventions in an individualized and personalized approach. Lack of health literacy may result in non-adherence to the drug regimen or the accidental overdose error with serious implications (Berkman et al., 2011). It is important to emphasize that health literacy and empowerment contribute to improving health, quality of life, and people’s health-seeking behaviors (Fung et al. 2016). This means that the more the person knows and understands about their health and disease situation, the more motivated and available will be to deepen other areas associated with health. The authors consider that to learn to live with the disease condition, the development of these two concepts in nursing care is essential.

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Self-care Nurses play an import role in patient-centered care, therefore, they know the importance of incorporating self-care as an explicit and permanent strategy in nursing care. Self-care is a central concern of patient with chronic diseases since it influences a set of factors such as maintaining the adequate level of physical and psychological well-being; reducing morbidity and mortality; reducing the use and cost of health services; improved personal satisfaction, and improved control and quality of life (SchnellHoehn, et al., 2009). When identifying self-care as a central concept in nursing care, it is important to define this concept according to Dorothea Orem. Self-care is defined as the activities that the person performs by oneself to maintain life, health, and well-being (Orem 2001). Other authors, such as Kralik, Price & Telford 277

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 Learning to Live with Chronic Disease

(2010), report that self-care results from the combination of biomedical knowledge about the disease and the person’s knowledge of life. It is a very comprehensive concept as it encompasses hygiene, food, lifestyle, environmental, socioeconomic and self-medication care. According to the International Council of Nurses (ICN), self-care is an “activity carried out by one’s self: dealing with what is necessary to maintain oneself, to remain operational and to deal with the individual basic and intimate needs and activities of daily living” (ICN, 2011). According to Orem (2001), self-care is not considered an innate action but rather learned by the person in their sociocultural context. It is a deliberate and intentional action that results from a requirement felt by the individual or observed by another and that needs its commitment. The identification of the physical and psychological responses to the disease requires constant planning in order to achieve again the well-being and sense of order in life. This translates into a process of adaptation, of personal learning, and of how to live well with the disease (Kralik et al. 2010). Often after stabilizing the disease, the absence of symptoms can influence the person to think that they are cured and do not need health care and can return to less healthy habits. Because of hospitalizations becoming shorter and shorter, when patient return home after an ACS, patient do not always follow in the most correct way the therapeutic regimen indicated to reduce the risk of a new event. Although they know that they can compromise the cardiovascular system and complications may appear, it is not enough to practice self-care (CortésBeringola, et al., 2017). According to these authors, the diagnosis of coronary disease gives the person emotional suffering due to the fear of death, of being invalid, of the unknown, of loneliness, of depression and anguish, since the heart is considered a noble and vital organ. However, these anxieties and fears can potentiate stress and anxiety, aggravating the clinical picture, but also, may encourage the practice of self-care. The episode of sudden hospitalization with indications for surgical treatment in the case of myocardial revascularization is considered an incentive for self-care behaviors. Nevertheless, after the acute episode, this self-care practice can be abandoned or followed in an irregular way. When the demands of self-care exceed the person’s ability to practice it autonomously, nurses must intervene in different ways, such as, through support and education, and provide an environment that promotes their personal development (Orem, 2001). The concept of self-care involves personal and individual responsibilities oriented to lifestyles and health behaviors necessary for optimal human development and functionality, as well as activities that require strategies to deal with the new health condition (Omisakin et al., 2011). In Gallo & Laurenti (2014) study with survivors of acute myocardial infarction that experienced primary angioplasty, it was shown that patient generally do not perceive the severity of their disease, nor are they knowledgeable about risk factors and the need for post-discharge care although they have been subjected to invasive intervention. These authors emphasize the role of nurses in directing the person towards healthy habits, following the proposed therapeutic regimen and carrying out self-care for prevention and health protection. Promoting these behaviors requires education actions directed at the person and the family so that they take responsibility for their health care needs (Cebeci and Celik 2008). Cardiovascular chronicity is many times characterized by imbalance and uncertainty, the person becoming asymptomatic, has a different perception of their state of health and the need to control risk factors, judging themselves cured (Claassen et al. 2012). The nurses’ approach to promoting self-care capacity needs to include a combination of education the use of strategies that promote the increase of self-esteem; individual and family responsibility; the ability of self-management oriented to the new personal and environmental difficulties and, the effectiveness of the continuity of health care (Hooft, 2017). 278

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 Learning to Live with Chronic Disease

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Chronic Disease Management According to Lorig & Holman (2003), scientific evidence proves the effectiveness of education programs for self-management of the chronic condition. Thus, we can affirm that to facilitate and incorporate activities that promote self-care, educational initiatives such as nursing therapeutics are necessary. The management of chronic disease assumes a level of demand for permanent care and reaches a priority dimension in the health area. Patient with chronic disease describe the process of self-care as transformational in terms of feelings about themselves and the recovery of a sense of life. Conscious of the importance of nursing care for patients after ACS, more specifically the promotion of self-care, autonomy, health improvement and quality of life, it is important that this process be supported in health education, in the recognition of the individuality of the person. Future projections indicate that chronic diseases will continue to be the major contributors to mortality and disability in developed countries and will continue to increase (Busse et al. 2010; Gerteis et al., 2014). Chronic disease management contributes to ensuring that patients receive appropriate treatment, teaching them to be proactive in their self-care through education for self-management of the disease (Grady et al., 2014). Self-care from the perspective of patient living with these diseases presents itself as a dynamic process of learning through experience. In order to create order in life, it is necessary to identify the physical and psychological responses to the disease and to make a plan. It is a process of adaptation and learning about oneself, and about how to live well with the disease. The patient has an active role in managing their health condition but does not dispense the participation of a group of professionals who contribute to their well-being. Chronic Disease Management is seen as one of the most cost-effective solutions being defined as a coordinated system of interventions and communications for patients with one or more chronic diseases, or at risk of developing illness and for whom efforts of self-management are relevant (OE, 2010). WHO defines chronic disease management as “continuous management of conditions over a period of years or decades,” since it involves a long-term process. In practice, the operationalization of this concept is processed through the creation and implementation of Disease Management Programs. Efficient management of chronic disease contributes to a better quality of health services offered to patients in terms of care, waiting lists, cost reduction and absenteeism (WHO 2017). Nurses establish a relationship that allows the patient to share their experience about the management of the disease and thus achieve an association between the knowledge acquired with the help of professionals and self-knowledge. It is relevant that the practitioner helps the person to believe in their abilities to make informed decisions (Kralik et al. 2010). This means that the focus of attention of the health professionals should be on the person, which can learn skills and abilities to make decisions on their health process (Crisp 2014). It is, therefore, a progressive educational process that values the experience of the experiences, transforming the person into a critical agent of change, of their own reality. Consequently, the training will result from collaboration between the health professional and the patient. Compared to an acute condition that will eventually be restored, it is understood that chronic diseases requiring long-term follow-up leading to more human and financial resources. WHO estimates that 6080% of global health resources are directed to chronic diseases, that will tend to increase and occupy increasing proportions in public and private budgets (Busse et al. 2010). After the acute phase of the disease, there are patients who stay for several years without health surveillance and only re-enter the system when complications happen, and therefore, are potential high-risk patients. Inevitably costs are generated, which could have been avoided with proactive interventions advocated by self-management 279

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 Learning to Live with Chronic Disease

(WHO 2014). This brings the need for effective change to the adoption of the patient-centered paradigm. Health care based on the biomedical model, centered on the hospital context and the disease, which has given satisfactory answers to the needs of patients with acute disease, is inappropriate to respond efficiently to the multidimensional needs of patients with chronic disease. Naturally, the focus of attention of the health professional cannot be on the disease but on the person with the disease (Hooft, 2017). Patient-care centered on the person/family, allow the adoption of self-care behaviors and the mobilization of self-management competencies of the therapeutic regime in order to promote the experience of healthy transition processes. Faced with these circumstances, chronic diseases represent one of the most important challenges facing health systems in the 21st century (WHO 2017). When confronted with new population needs and new paradigms regarding the quality and safety of health care delivery and the need to control costs in the health sector, governments feel pressured to conceive policies that adopt intervention strategies in favor of an integrated approach. These strategies aim to improve the health of the population, the quality of care provided and the efficiency in the use of resources (ICN 2018). Chronic diseases impose a significant challenge to health systems. The current picture of Portuguese public health is characterized by the progressive aging of the population, the increase in the average life expectancy, the increasing prevalence of patients with chronic incapacitating diseases and the provision of fragmented health care, centered on the decisions of health professionals where the person and family assume a passive role (OECD, 2015). Health professionals decide the treatment to be followed without sharing the decisions with the person/family. As a result, in Portugal, the greatest cause of medical consultations is the disease progression, that is, the lack of support during the non-acute stages (OECD, 2015). There seems to be no care continuity when the person is asymptomatic. However, there has been an effort to ensure integrated care. The philosophy is to recover, promote autonomy and functionality because rehabilitation and social reintegration are important (Crisp, 2014). The Portuguese Government has established as priority the development of a Program for the Prevention and Management of Chronic Disease and Health Promotion. This Program focuses on the development of the National Program of Education for Health, Literacy, and Self-Care. They also developed the “Integrated Disease Management” model, which aims to promote a planned action of different health care providers by mobilizing adequate resources to improve health status, quality of life and overall well-being of patients (Coelho 2014). For effective management of chronic disease and taking into account existing initiatives and the experience of several countries in attempting to improve services, the following components are necessary: i) the use of information systems to access vital data on individuals and populations; ii) the identification of patients with chronic disease and its classification through risk stratification; iii) disease prevention and health promotion; iv) the involvement of patients in their own care, as a motivation for self-care; v) coordination of health care through the articulation of public and private health and social services, volunteers and community groups, as well as users of services and their families; vi) the use of multidisciplinary teams; integration of expertise and general knowledge; vii) integration of care across organizational boundaries, allowing users of the system to easily move within it and the provision of less intensive care (Rijken et al. 2014). The above aspects corroborate the importance of disease management as it contributes to patients being able to receive appropriate care. Patients with chronic conditions lack self-care skills to manage difficulties that arise at home. Through education for self-management, the person is an actor in the transition process and a partner in health care. 280

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 Learning to Live with Chronic Disease

Professional competence gives nurses more and more possibility to play the role of managers in chronic disease. They provide information and teach, establish relationships with patients, caregivers, and communities, provide continuity of care, use technology for advance care, support adherence to long-term therapies, and promote collaborative practice (OE, 2010). In order for nursing intervention to promote the development of self-care skills in patients, it is fundamental to provide nurses with resources that enable the acquisition of relevant information to support the clinical decision-making process and facilitate the adoption by the patient of adaptive strategies that contribute for the maintenance of independence in self-care, in a process of management, training and autonomy. Caring for the person with chronic disease requires permanent and focused nursing interventions for a model that is focused on human responses to transitions. There are increasing and the urgent need for nurses to be involved in the community and in all sectors to address the growing threat posed by chronic diseases to the health and well-being of populations (OE, 2010). It is up to the health sector to lead the fight against chronic disease, and nurses can make a huge contribution not only to prevention but also to caring for millions of people around the world who are already affected. It is the nurse who has direct contact with the patient-family-community, has the training to ensure the continuity of health care and has the skills to deal with all the elements that integrate the patient’s well-being, from the physical/clinical aspects, emotional, social, cognitive and spiritual. (Wanchai, et al., 2018). The nurse should aim at functional independence through the promotion of self-care and control of risk factors, keeping the patient motivated and collaborative with his / her therapeutic regimen. It thus assumes a fundamental role in the processes of prevention and rehabilitation of patients with chronic disease. Though, caring for the person with chronic disease becomes a challenge for nursing, due to the existence of the dichotomy between the models in use in the professional context and the exposed models of the discipline. According to Sousa et al. (2015), the analysis reflected on the practices in use represents the first step for nurses to become aware of the need to change, in order to bring the model in use closer to the exposed model. In a study carried out by these authors, the nurses expressed the difficulties experienced in providing care to the person with chronic disease and gathered these difficulties into four categories: i) person, the disease and the environment; ii) health care organization ; iii) nursing practice (evaluation), and iv) relationships in the health team. These difficulties relate to aspects inherent to the person, to organizational factors, to the practice of care itself and to relational factors among the team. In addition, this study emphasized the need to use intervention models that orient nursing practice for more meaningful care so that the person develops competences and is able to make decisions, becoming more autonomous in the management of their health process. The nurse through the development of educational activities based on scientific knowledge, ability, critical thinking, and creativity, promotes the learning of the person and family in order to develop skills regarding health management after hospitalization (Sadler et al., 2014). Through educational interventions, the person can understand the need for change. From the moment a person assimilates their new condition, they can achieve a better quality of life (Whittemore et al.,2008). Awareness of self-knowledge and the surrounding environment provides the discovery of the persons potential as a self-care agent and the acceptance of its limitations will contribute for recovery (Wanchai et al., 2018). Developing therapeutic education activities to enable the person to self-care and autonomy in the management of chronic disease and in the prevention of potential complications is of nurses concern (Riegel et al., 2017). Patient-centered care enables anticipating the responses to self-care needs and can help the individual to maintain, as much as possible, an autonomous lifestyle, develop confidence and 281

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 Learning to Live with Chronic Disease

make choices, and better manage their needs. Promoting innovation and change in the quality of nursing care requires the stimulation of the holistic view, the humanization of care and a reduction of the gap between the models in use in the professional context and the exposed models of the discipline. In this sense, research should reveal the phenomena of learning in the processes of appropriation of self-care, from an analytical perspective in order to create the theoretical structure that supports it. According to the ICN (2010), despite the promotion of adequate information and awareness of its mobilization, it may not be enough to change behaviors or practices. The person with knowledge may reveal behaviors that do not correspond to what is expected and can choose to continue to make decisions and maintain life habits less adequate. Crises caused by unexpected events may not provide the conditions for rapid adaptation. Nurses can provide the necessary tools for patients to deal with the new health-disease situation.

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Educational Intervention Considering the importance of the therapeutic regimen in the control of coronary disease and the consequent risks of non-adherence, it becomes necessary to develop strategies that promote greater adherence to the prescribed treatment. Meeting this goal determines the development of educational programs that enable the development of self-care skills, taking into account that the educational process is gradual, systematized, personalized and complemented by professionals. This requires the patients to have access to information, to understand and interpret in their own experience. In this context, nurses play a relevant role in improving the health status of populations, either in maintaining or obtaining healthy behaviors or in situations of illness for the attainment of well-being, improvement of the quality of life or independence promotion (Ebrahimi Belil et al., 2018). This implies a model of educational approach adopted to promote self-care and increase: self-esteem; individual and family responsibility; ability of self-management oriented to the new personal and environmental difficulties and the effectiveness of the continuity of care (Hooft, 2017). Self-management education programs, skills necessary to achieve quality of life, are an important support in the fight against chronic disease (Lorig & Holman, 2003; Sousa, 2015). The effectiveness of programs for adherence and management of the treatment regimen for patients with chronic diseases has been investigated and is considered the most holistic form of intervention (Ebrahimi Belil et al., 2018). Given the particular case of coronary heart disease, the recommended therapeutic regimen requires deep and complex changes in daily life routines such as attending a cardiac rehabilitation program, taking medication, modifying behavior and adhering to a healthy lifestyle. Cortés-Beringola, (2017), advises about the complications that can occur to patients with coronary heart disease, especially those who have had a myocardial infarction, which can be five to seven times more frequent than those in people with no diagnosed disease. However, in practice, nurses have difficulty in providing care aimed at the development of skills in self-care, since the high cost of hospitalizations and scientific advances in treatment has shortened hospitalization time for the person with cardiac pathology. This implies that the rehabilitation plan is fundamental, that the educational process begins on the first day of hospitalization (Waring et al. 2014). Uncertainty about what will happen after discharge and how the person adapts to a new health condition justifies a patient-care practice that contributes for the development of self-care skills. The nurse has a relevant role as an educator in the health process of the person post- ACS, in the process of adaptation and rehabilitation, making it able to adopt healthy behaviors.

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 Learning to Live with Chronic Disease

FUTURE RESEARCH DIRECTIONS The process of empowerment and autonomy has the objective to maintain self-care independence, implicating that nursing interventions based on educational practices facilitate the adoption of adaptive strategies that improve the quality of life. The patient, having an active voice in their transition process, feels the responsibility of making decisions and acquiring behaviors that lead to the improvement of their health condition. The results obtained in the study of Gomes et al., (2019) indicate the need for a greater systematization of educational interventions. Crisp, (2014) emphasize the need to implement different methodologies in the approach to chronic disease, and self-care, both in curricular content and in interdisciplinary work strategies. Tested and validated educational programs should enable nurses to learn educational strategies for patient-centered care based on teamwork. The production of formal knowledge through research in the field of education for the management of chronic disease is fundamental. Interventions aimed at developing self-care skills are necessary so that patients are able to manage their therapeutic regimen and adapt to their new health condition. However, there is a need for greater awareness and investment in educational nursing interventions so that the care provided is of effective quality.

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CONCLUSION Globally there has been an increase in average life expectancy due to declining birth and death rates, and because of the significant changes in health and disease patterns. This has led to an increase in the incidence of chronic diseases and consequently, an increase in some type of disability among adults and the elderly. In order to fulfill care needs for those experiencing a health-disease transition, particularly in the case of chronic disease, directed nursing care should be towards health literacy, empowerment, self-care promotion, and accountability. Self-care behavior in the context of chronic disease is determined by the patient’s knowledge, by the perception of the challenge that the disease imposes in everyday life (personal, professional and social), the way the disease progresses and the type of treatment (Hooft et al. 2017). The authors believe that the implementation of educational nursing interventions can improve patient rehabilitation and give the necessary tools to live with chronic disease. Although the study by Gomes et al., (2018) is only valid for the specific cardiac context, the results obtained indicate that educational nursing interventions made significant gains in the lives of cardiac patients, and the positive results of the study suggest that educational programs of this nature can be adapted to the management of other chronic diseases. The general objective of an educational intervention designed to improve the health of patients living with chronic diseases is based on prevention of complications and improvement of the quality of life (Megari, 2013). The importance of the therapeutic regimen to control coronary disease and the consequent risks of non-adherence, make it necessary for the development of strategies that promote greater adherence to the prescribed treatment. These facts determine the importance of educational nursing interventions based on the increase of health literacy and patient’s empowerment that enable the development of self-care skills, taking into consideration that the educational process is gradual, systematized, personalized and

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 Learning to Live with Chronic Disease

complemented by professionals. This requires that the patients have access to information and understand the importance of modifying their lifestyle to increase daily function and live with a chronic disease.

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Coelho, A. (2014). Análise de uma política pública de saúde: Gestão Integrada da Doença. In Instituto de Higiene e Medicina Tropical. Lisboa: Universidade Nova de Lisboa. Cortés-Beringola, A., Fitzsimons, D., Pelliccia, A., Moreno, G., Martín-Asenjo, R., & Bueno, H. (2017). Planning secondary prevention: Room for improvement. European Journal of Preventive Cardiology, 24(3_suppl), 22–28. doi:10.1177/2047487317704954 Crisp, N. (2014). Um Futuro para a Saúde – todos temos um papel a desempenhar. Lisboa: Fundação Calouste Gulbenkian. Dalal, H. M., Zawada, A., Jolly, K., Moxham, T., & Taylor, R. S. (2010). Home based versus centre based cardiac rehabilitation: Cochrane systematic review and meta-analysis. British Medical Journal, 340, 15. PMID:20085991

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Dantas, I., Santana, R., Sarmento, J., & Aguiar, P. (2016). The impact of multiple chronic diseases on hospitalizations for ambulatory care sensitive conditions. BMC health services research, 16(a), 348. doi:10.118612913-016-1584-2 dos Enfermeiros, O. (2010). Servir a comunidade e garantir a qualidade: os enfermeiros na vanguarda dos cuidados na doença crónica. Genebra. Ebrahimi Belil, F., Alhani, F., Ebadi, A., & Kazemnejad, A. (2018). Self-Efficacy of People with Chronic Conditions: A Qualitative Directed Content Analysis. Journal of Clinical Medicine, 7(11), 411. doi:10.3390/jcm7110411 PMID:30400316 Fung, C., Yu, V., Guo, C., Wong, K., & Kung, S. (2016). Development of a Health Empowerment Programme to improve the health of working poor families: Protocol for a prospective cohort study in Hong Kong. BMJ Open, 6. PMID:26842271 Gallo, A., & Laurenti, R. (2014). Mudança de hábitos e atitudes em sobreviventes de infarto agudo do miocárdio e angioplastia primária. Saude (Santa Maria), 40, 59–66. Ghisi, G., Chaves, G. S. S., Britto, R. R., & Oh, P. (2018). Health literacy and coronary artery disease: A systematic review. Patient Education and Counseling, 101(2), 177–184. doi:10.1016/j.pec.2017.09.002 PMID:28899710 Gomes, L., & Reis, G. (2019). Effectiveness of an Educational Program to Enhance Self-care Skills After Acute Coronary Syndrome: A Quasi-Experimental Study. In J. García-Alonso & C. Fonseca (Eds.), Gerontechnology. IWoG 2018. Communications in Computer and Information Science (Vol. 1016). Cham: Springer. doi:10.1007/978-3-030-16028-9_24 Grady, P. A., & Gough, L. L. (2014). Self-Management: A Comprehensive Approach to Management of Chronic Conditions. American Journal of Public Health, 104(8), e25–e31. doi:10.2105/AJPH.2014.302041 PMID:24922170 Herber, O. R., Jones, M. C., Smith, K., & Johnston, D. W. (2012). Assessing acute coronary syndrome patients’ cardiac-related beliefs, motivation and mood over time to predict non-attendance at cardiac rehabilitation. Journal of Advanced Nursing, 68(12), 2778–2788. doi:10.1111/j.1365-2648.2012.06066.x PMID:22725949

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Hooft, S. M., Been‐Dahmen, J. M. J., Ista, E., Staa, A., & Boeije, H. R. (2017). A realist review: What do nurse‐led self‐management interventions achieve for outpatients with a chronic condition? Journal of Advanced Nursing, 73(6), 1255–1271. doi:10.1111/jan.13189 PMID:27754557 ICN. (2011). Biennal Report. Geneva, Switzerland: International Council of Nurses. ICN. (2018). Transformation and innovation: 2016-17. ICN. Inglis, S. C., Clark, R. A., McAlister, F. A., Stewart, S., & Cleland, J. G. (2011). Which components of heart failure programmes are effective? A systematic review and meta-analysis of the outcomes of structured telephone support or telemonitoring as the primary component of chronic heart failure management in 8323 patients: Abridged Cochrane Review. European Journal of Heart Failure, 13(9), 1028–1040. doi:10.1093/eurjhf/hfr039 PMID:21733889

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Kralik, D., Price, K., & Telford, K. (2010). The meaning of self-care for people with chronic illness. Journal of Nursing and Healthcare of Chronic Illness, 2(3), 197–204. doi:10.1111/j.1752-9824.2010.01056.x Lall, D., Engel, N., Devadasan, N., Horstman, K., & Criel, B. (2018). Models of care for chronic conditions in low/middle-income countries: A ‘best fit’ framework synthesis. BMJ Global Health, 3(6), e001077. doi:10.1136/bmjgh-2018-001077 PMID:30687524 Lawn, S., McMillan, J., & Pulvirenti, M. (2011). Chronic condition self-management: Expectations of responsibility. Patient Education and Counseling, 84(2), e5–e8. doi:10.1016/j.pec.2010.07.008 PMID:20705412 Lorig, K. R., & Holman, H. (2003). Self-management education: History, definition, outcomes, and mechanisms. Annals of Behavioral Medicine, 26(1), 1–7. doi:10.1207/S15324796ABM2601_01 PMID:12867348 Megari, K. (2013). Quality of Life in Chronic Disease Patients. Health Psychology Review, 1(3), e27. doi:10.4081/hpr.2013.932 PMID:26973912 Meleis, A. (2010). Transitions Theory: middle range and situations-specific theories in nursing research and practice. New York: Springer Publishing Company. Nunes, S., Rego, G., & Nunes, R. (2016). Difficulties of Portuguese Patients Following Acute Myocardial Infarction: Predictors of Readmissions and Unchanged Lifestyles. Asian Nursing Research, 10(2), 150–157. doi:10.1016/j.anr.2016.03.005 PMID:27349673 OECD. (2015). OECD Reviews of Health Care Quality: Portugal 2015: Raising Standards, OECD Reviews of Health Care Quality. Paris: OECD Publishing. doi:10.1787/9789264225985Omisakin, D., & Ncama, P. (2011). Self, self-care and self-management concepts: Implications for selfmanagement education. Educational Research, 2(12), 1733–1737. Orem, D. (2001). Nursing Concepts of practice. Academic Press. Riegel, Moser, Buck, Dickson, Dunbar, Lee, … Webber. (2017). Self‐Care for the Prevention and Management of Cardiovascular Disease and Stroke A Scientific Statement for Health care Professionals From the American Heart Association. American Heart Association Council on Cardiovascular and Stroke Nursing; Council on Peripheral Vascular Disease; and Council on Quality of Care and Outcomes.

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Rijken, M., Bekkema, N., Boeckxstaens, P., Schellevis, F. G., De Maeseneer, J. M., & Groenewegen, P. P. (2014). Chronic Disease Management Programmes: An adequate response to patients’ needs? Health Expectations, 17(5), 608–621. doi:10.1111/j.1369-7625.2012.00786.x PMID:22712877 Roger, V. L., Go, D. M., Lloyd-Jones, D. M., Adams, R. J., Berry, J. D., Brown, T. M., ... Wylie-Rosett, J. (2011). Heart Disease and Stroke Statistics—2011 Update: A Report From the American Heart Association. Circulation, 123(4), e18–e209. doi:10.1161/CIR.0b013e3182009701 PMID:21160056 Rosamond, W., Flegal, K., Friday, G., Furie, K., Go, A., Greenlund, K., ... Hong, Y. (2007). Heart disease and stroke statistics--2007 update: A report from the American Heart Association Statistics Committee and Stroke Statistics Subcommittee. Circulation, 115(5), e69–e171. doi:10.1161/CIRCULATIONAHA.106.179918 PMID:17194875

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Sadler, E., Wolfe, C. D., & McKevitt, C. (2014). Lay and health care professional understandings of self-management: A systematic review and narrative synthesis. SAGE Open Medicine, 2. doi:10.1177/2050312114544493 PMID:26770733 Schnell-Hoehn, K. N., Naimark, B. J., & Tate, R. B. (2009). Determinants of self-care behaviors in community-dwelling patients with heart failure. The Journal of Cardiovascular Nursing, 24(1), 40–47. doi:10.1097/01.JCN.0000317470.58048.7b PMID:19114800 Schulman-Green, D., Jaser, S. S., Park, C., & Whittemore, R. (2016). A Metasynthesis of Factors Affecting Self-Management of Chronic Illness. Journal of Advanced Nursing, 72(7), 1469–1489. doi:10.1111/ jan.12902 PMID:26781649 Sousa, M. (2015). Promover o autocuidado. Apoiar a adesão e a gestão do regime terapêutico. Programa de intervenção de enfermagem em pessoas com diabetes (Unpublished doctoral dissertation). Universidade do Porto. Tol, A., Alhani, F., Shojaeazadeh, D., Sharifirad, G., & Moazam, N. (2015). An empowering approach to promote the quality of life and self-management among type 2 diabetic patients. Journal of Education and Health Promotion, 4(1), 13. doi:10.4103/2277-9531.154022 PMID:25861658 Wanchai, A. & J. Armer (2018) Promoting Self-Care Capabilities of Patients: Nurses’ Roles Self-Care Capabilities. JOJ Nurse Health Care, 7. Waring, Marshall, & Bishop. (2014). Discharge planning and care transition. In An ethnographic study of knowledge sharing across the boundaries between care processes, services and organisations: the contributions to ‘safe’ hospital discharge. Southampton, UK: NIHR Journals Library. Whittemore, R., & Dixon, J. (2008). Chronic illness: The process of integration. Journal of Clinical Nursing, 17(7b), 177–187. doi:10.1111/j.1365-2702.2007.02244.x PMID:18578794 WHO. (2002). Innovative Care for Chronic Conditions: Building Blocks for Action. Geneva: WHO. WHO. (2014). Noncommunicable diseases country profiles. Geneva: WHO. WHO. (2015). World report on ageing and health. Geneva: World Health Organization. WHO. (2017). Noncommunicable Diseases Progress Monitor, 2017. Geneva: World Health Organization.

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ADDITIONAL READING Anderson, L., Brown, J. P., Clark, A. M., Dalal, H., Rossau, H. K., Bridges, C., & Taylor, R. S. (2017). Patient education in the management of coronary heart disease. Cochrane Database of Systematic Reviews, 6, Cd008895. doi:10.1002/14651858.CD008895.pub3 PMID:28658719

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Jørstad, H. T., Minneboo, M., Helmes, H. J. M., Fagel, N. D., Scholte op Reimer, W. J., Tijssen, J. G. P., & Peters, R. J. G. (2016). Effects of a nurse-coordinated prevention programme on health-related quality of life and depression in patients with an acute coronary syndrome: Results from the RESPONSE randomised controlled trial. BMC Cardiovascular Disorders, 16(1), 144. doi:10.118612872-016-0321-4 PMID:27391321 Santos, R. D. (2017). Better health literacy can make the difference when control of risk factors for cardiovascular disease and quality of life are concerned. European Journal of Preventive Cardiology, 24(17), 1878–1879. doi:10.1177/2047487317735721 PMID:28969496 Schulman-Green, D., Jaser, S., Martin, F., Alonzo, A., Grey, M., McCorkle, R., … Whittemore, R. (2012). Processes of self-management in chronic illness. Journal of nursing scholarship: an official publication of Sigma Theta Tau International Honor Society of Nursing, 44(2), 136–144. doi:10.1111/j.15475069.2012.01444.x

KEY TERMS AND DEFINITIONS

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Chronic Disease: Are health conditions that require ongoing health care and can limit activities of daily living. Educational Nurse Intervention: Is nursing care based on educational methods to enhance patient outcomes. Health Literacy: Is the capacity to which individuals have to obtain, process, and understand health information that is needed to make appropriate health decisions. Patient Empowerment: Is the patients’ self-efficacy and capacity to make informed decisions about their healthcare. Patient-Centered Care: It is the partnership between patients and health care professionals. It is a holistic view of caring and listening to patients’ preferences and values. Rehabilitation Process: Is the process that identifies patient’s problems and needs and restores lost skills, develop new skills in order to regain maximum autonomy. Self-Care: Is the capacity and ability of each individual to take care of their own health.

This research was previously published in the Handbook of Research on Health Systems and Organizations for an Aging Society; pages 152-166, copyright year 2020 by Medical Information Science Reference (an imprint of IGI Global).

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Chapter 17

Exploring Early Adopter Baby Boomers’ Approach to Managing Their Health and Healthcare Deborah E Seale Des Moines University, Des Moines, USA Cynthia M LeRouge Florida International University, Miami, USA Jennifer E Ohs Saint Louis University, Saint Louis, USA Donghua Tao Saint Louis University, Saint Louis, USA

Helen W. Lach Saint Louis University, School of Nursing, Saint Louis, USA Keri Jupka National Center for Parents as Teachers, Saint Louis, USA Ricardo Wray Saint Louis University, Saint Louis, USA

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ABSTRACT The Patient 3.0 Profile is used to explore to the patient engagement strategies of early adopter baby boomers’ in three domains: 1) patient relationships, 2) health information use and 3) consumer health technology (CHT) use. Findings from six focus groups with early adopter boomers challenge prior notions about older adults’ passive approach to patient engagement. Baby boomers want to make final healthcare decisions with input from providers. While adept at finding and critically assessing online health information for self-education and self-management, boomers want providers to curate relevant and trustworthy information. Boomers embrace CHTs offered through providers (i.e., patient portals, email and text messaging) and sponsored by wellness programs (i.e., diet and activity devices and apps). However, there is no indication they add information to their online medical records or use CHT for diagnosis, treatment or disease management. Additional resources are needed to encourage widespread adoption, support patient effectiveness, and confirm cost-benefit.

DOI: 10.4018/978-1-6684-2414-8.ch017

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 Exploring Early Adopter Baby Boomers’ Approach to Managing Their Health and Healthcare

INTRODUCTION During the baby boom (1946 to 1964), birth rates increased from 20 live births per 1000 before and after the boom to a high of 26.5 in 1947 (Colby, 2015). As boomers age, they are expected to live longer with more chronic conditions (Garcia, Harrison, & Goodwin, 2015; Gaudette, Tysinger, Cassil, & Goldman, 2015). These factors along with advancements in healthcare and boomers’ sheer number are expected to contribute to a rising dependency ratio (number of adults age 65+ to those 18-64 years of age) (Badley, Canizares, Perruccio, Hogg-Johnson, & Gignac, 2015; Garcia et al., 2015; Gaudette et al., 2015; Knickman & Snell, 2002). The ratio is expected to rise from 1.2 before the boom to 3.5 after the last of the boomers turn age 65 in 2030 (Colby & Ortman, 2014). This high ratio increases the economic burden of aging on society (Knickman & Snell, 2002) as a smaller working-age population finances the health and welfare of a growing older, non-working population (Johnson, Toohey, & Wiener, 2007; Institute of Medicine, 2008). Additionally, healthcare resources will be strained (Gaudette et al., 2015; American Hospital Association, 2007). Medicare enrollments will increase by 63% as boomers age into Medicare – up from 49 million beneficiaries in 2011 (US Center for Medicare and Medicaid Services, 2013) to over 80 million by 2030 (Medicare Advisory Commission, 2015). Strikingly, the 65+ population will double from 2011 to 2050 (Jacobsen, Kent, Lee, & Mather, 2011). Engagement of consumer-patients in the management of their health and healthcare is proposed to improve health outcomes and achieve efficiencies in care delivery (Hibbard, Greene, & Overton, 2013; Millenson & Berenson, 2015; Raffaeli, Spinsante, & Gambi, 2016; Zarour, 2017). Three primary engagement strategies are proffered to prepare and engage consumer-patients: collaboration with their healthcare providers, self-education through health information use, and consumer health technology (CHT) use for self-care (Carman et al., 2014; Gagnon & Chartier, 2012; Gee, Greenwood, Paterniti, Ward, & Miller, 2015; LeRouge, Tao et al., 2014). Marked by the passage of key legislation (US Congress, 2009, 2010, 2015), these patient engagement strategies are relatively recent innovations. As Rogers (2003) noted in his seminal book, Diffusion of Innovations, studying early adopters can improve implementation efforts and result in an increase in the rate of adoption by subsequent adopters. We use the Gagnon and Chartier (2012) Patient 3.0 Profile, which addresses all three patient engagement strategies as a conceptual framework to recruit early adopter baby boomers and understand how they put the three engagement strategies to use.

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Patient 3.0 Conceptual Framework for Engagement The Gagnon and Chartier (2012) Patient 3.0 Profile characterizes consumer-patients that take responsibility for managing their health and healthcare as “3.0 Patients” – the vernacular used to describe successive generations of the World Wide Web. The Profile provides a holistic view of consumer-patient engagement by describing 3.0 patient competencies for three domains: (1) Provider Relationships, (2) Health Information, and (3) Consumer Health Technology (CHT). For Provider Relationships (Domain 1), 3.0 Patients are described as “primary members” of the healthcare team. As such, 3.0 Patients share information, ask questions, exercise critical thinking and accept guidance from other members of the healthcare team to deepen their understanding and knowledge of their health and healthcare. Further, they express their point of view concerning care options and consider the cost of care in treatment decisions.

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 Exploring Early Adopter Baby Boomers’ Approach to Managing Their Health and Healthcare

In the Health Information domain (Domain 2), 3.0 Patients search for information to learn about their health, care, treatment, and health problems. They seek out alternative viewpoints, opinions, and information sources to understand their situation. They also search for relevant information to learn how to prevent illness or alleviate health problems. In the third domain, 3.0 patients use Consumer Health Technology (CHT) for self-care and care management. For self-care, electronic devices are used to access medical information (e.g., personal health records), collect and report health measurements for chronic disease management (e.g., blood pressure, blood sugar), and track physical activity and diet to maintain health. For care management, 3.0 Patients use CHT to communicate with the healthcare team (e.g., ask questions, provide status or progress reports, request prescription refills), access healthcare services (e.g., participate in electronic office visits using email, telehealth), and coordinate healthcare services (e.g., appointments, billing).

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Baby Boomers as 3.0 Patients As baby boomers age into Medicare, they are entering a group defined as older adults (i.e., 65+ years). Studies have consistently shown that older adults are less likely to participate in shared decision-making (Levinson, Kao, Kuby, & Thisted, 2005; Song & Ward, 2014; van den Brink-Muinen, et al., 2006). As well, they are less likely to seek and use information (Hardt & Hollis-Sawyer, 2007; Lustria, Smith, & Hinnant, 2011) and use technology (Heart & Kalderon, 2013; Taha, Sharit, & Czaja, 2014) to manage their health and healthcare. However, research that addresses one or more of the three engagement strategies, considers age and includes baby boomers is limited and inconclusive. Studies focusing on older adults that include baby boomers have generally found boomers are associated with taking a more active role with providers (Domain 1) (Hack, et al., 2010; Hibbard, Mahoney, Stockard, & Tusler, 2005; Moreau, et al., 2012; Winbush, McDougle, Labranche, Khan, & Tolliver, 2013). Compared to older adults, boomers rely more heavily on the Internet to find health information (Domain 2) (Hardt & Hollis-Sawyer, 2007; Winbush et al., 2013; Cho, et al., 2009; Kontos, Blake, Chou, & Prestin, 2014; Tennant, et al., 2015). They are also more likely to use CHT for self-care and care management (Domain 3) (Taha, et al., 2014; Winbush et al., 2013; Cho et al., 2009; Kontos et al., 2014). However, when considering younger adults and generation, results are contradictory or split. Mixed results are reported for various informed decision-making measures (Provider Relationship Domain) (Song & Ward, 2014) and readiness to use a range of CHT (LeRouge, van Slyke, Seale, & Wright, 2014). Some studies have found baby boomers are as likely as younger adults (Generation X and millennial) to find and use health information (Lustria et al., 2011) and use CHT (Lustria et al., 2011; Bajracharya, Crotty, Kowaloff, Safran, & Slack, 2015; Kim, Wineinger, & Steinhubl, 2016). Yet other studies have found baby boomers are less active users (Ledford, Cafferty, & Russell, 2015), less prepared to use health information (Seckin, Yeatts, Hughes, Hudson, & Bell, 2016), and less interested in using CHT than younger respondents (Sanders, et al., 2013; Spooner, Salemi, Salihu, & Zoorob, 2016). These mixed and contradictory findings suggest that baby boomers may be the bridge generation for adopting patient engagement strategies. Therefore, in this study, we wanted to understand how the engagement strategies are put into practice by early adopter baby boomers. Rogers (2003) describes early adopters as socially-connected, opinion-leaders that learn from initial adopters (i.e., innovators) and influence the adoption decisions of downstream adopters (i.e., the early majority). Early adopters also tend to adapt or reinvent innovations – customizing or using them in unexpected ways – as they experiment during implementation. What is learned from early adopters can 291

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 Exploring Early Adopter Baby Boomers’ Approach to Managing Their Health and Healthcare

be used to stimulate adoption by other boomers and reform the adoption process as it unfolds. If the engagement strategies work as expected, widespread adoption by baby boomers will encourage healthy aging and offset the associated dependency costs for the healthcare system and society.

Primary Objectives The purpose of this study it to understand the motivation for, and context of, adoption from the perspectives of early adopter baby boomers while implementation of the three engagement strategies is underway. Our study seeks to answer three research questions. Specifically, how do early adopter baby boomers manage their health and healthcare when: (1) working with healthcare providers, (2) finding and using health information, and (3) using consumer health technology? Understanding how early adopter baby boomers put these innovations to use will benefit those working in patient engagement including researchers, developers and implementers, healthcare providers, and policy makers. What is learned will inform research on patient engagement in all three domains by clarifying some of the current controversies in the literature regarding baby boomers as they age. Healthcare providers will gain insights into the motivations and challenges of engagement for baby boomers and allow them to adjust practices. Developers and implementers of patient engagement tools will gain insights about user needs and practices to inform design, implementation, and refinement of patient engagement tools and processes. Planners and policy-makers will achieve a clearer understanding of the effectiveness of current programs and policies to more effectively prepare for baby boomers’ in their later decades.

METHOD Focus groups were used as the method of data collection to encourage contextualization and clarification of perspectives through group interaction (Rogers, 2003; Krueger & Casey, 2015). This analysis was conducted as a part of a broader study exploring baby boomers’ goals, needs, and practices when taking care of their health and how contextual factors shape their goals, needs, and practices. The research protocol was approved by the Saint Louis University Institutional Review Board [# 22844].

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Sample and Setting To ensure a recruitment pool that had been introduced to the engagement strategies, study participants were recruited through employers that were interested in employee health and wellness. Participating employers were recruited through a non-profit business coalition, neighborhood associations, and research team member contacts. Participating organizations were from manufacturing, marketing, construction, higher education, and small business. Any non-health-related organization willing to facilitate participant recruitment was eligible to participate. Recruitment was facilitated by an organizational representative sending an announcement via email to employees, posting the announcement on the organization’s website, or including the announcement in an electronic newsletter. The announcement included information about the study along with an invitation to participate, and a link to an online survey. The online survey was used to screen for baby boomers that met the early adopter screening criteria, collect demographic and health information for eligible participants, and gather contact information

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 Exploring Early Adopter Baby Boomers’ Approach to Managing Their Health and Healthcare

to schedule focus groups. Online surveys were completed from April to November 2014. The flow of participant recruitment is shown in Figure 1. Sixty-seven (56% of eligible) individuals were scheduled and 57 (85% of scheduled) participated in a focus group session. Six focus groups were held between May and December 2014. Mean focus group size was 9.5 and ranged from 3 to 13 participants. Focus group sessions were scheduled on a weekday, after work hours, and at or near the work site to make participation more convenient. Reminder emails were sent two days before and on the day of the session. The focus groups were approximately 90 minutes long. All participants stayed for the entire discussion. Dinner and a small monetary incentive were provided for participation. To be eligible, affirmative responses was required for 4 out of 5 early adopter screening questions were required (Figure 1). A negative response was received from 9 (16%) of the 57 participants selected for the study. Four participants reported not seeing a healthcare provider for an annual checkup. Four said they do not look for health information regularly. One indicated no interest in using technology to manage his/her health. All 57 participants said they want to be actively involved in health decisions and they use a computer, tablet, or smartphone on a weekly basis. Like other early adopters (Rogers, 2003), study participants had the means (i.e., education, income, and overall health) to cope with the risk and uncertainty associated with early adoption of innovative practices and tools. Participants were employed, insured and English-speaking. Mean age was 57±4.2 with a range of 50-67 years (Table 1). Participants were primarily female (72%), Caucasian (95%), married or living with a partner (70%). The majority had a four-year college degree or higher (69%), a household income of $75,000 per year or more (75%), and held management or professional positions (52%). The health of the sample was reflective of similar boomer health status and lifestyle characteristics reported by King, Matheson, Chirina, Shankar, and Broman-Fulks (2013). Most participants reported very good or excellent overall health (63%) and never having used tobacco (70%). At the same time, most participants described themselves as overweight (67%), needing to work on their fitness or being out of shape (58%), and having one or more chronic health conditions (58%).

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Data Collection and Analysis In the focus groups, participants used pseudonyms to insure privacy. Sessions were audio-recorded and sent to a professional service for transcription. An experienced moderator led all six of the focus groups using an interview guide. Participants were asked four primary questions derived from the Patient 3.0 Profile (Table 2). The first author attended all sessions and each of the remaining co-authors attended one session. As an immediate means of validating understanding, the co-author present provided an oral summary of the discussion to the participants, who in turn were given the opportunity to clarify or add information. One of the co-authors reviewed each transcript for accuracy. The multidisciplinary makeup of the authors (i.e., health informatics, nursing, information science, communication, and public health) ensured that data collection and analysis addressed the standards of a range of disciplines. An iterative approach to data analysis was used that incorporated both deductive and inductive approaches (Elo & Kyngäs, 2008; Tracy, 2013). That is, the Patient 3.0 Profile served as a high-level coding schema from which to develop the initial deductive codes and thematic analysis was used to identify inductive codes that emerged outside of the conceptual framework. Each transcript was independently analyzed by two of the co-authors to (a) deductively identify excerpts associated with Patient 3.0 Profile and (b) inductively identify additional themes relevant to the conceptual framework. Two of the co-authors 293

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 Exploring Early Adopter Baby Boomers’ Approach to Managing Their Health and Healthcare

independently analyzed each transcript to enhance coding reliability, protect against selective coding and provide contrasting viewpoints. After each coding iteration, all co-authors met to discuss discrepancies and come to an agreement. Throughout the analysis and writing processes, the authors returned to the data to clarify and refine codes and code descriptions, and to reassess quotation extracts. Analyses were conducted using Dedoose (2014-2017), a web-based qualitative data analysis software package.

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Figure 1. Chart depicting flow of participant recruitment

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 Exploring Early Adopter Baby Boomers’ Approach to Managing Their Health and Healthcare

Table 1. Demographic and health characteristics of focus group participants (N =57) Characteristic

Statistic

Age in years, mean (standard deviation)

57 (4.2)

Female, n (%)

41 (72)

Race, n (%) Caucasian African-American

54 (95) 3 (5)

Marital status, n (%) Married/living with partner

40 (70)

Single/divorced/widowed

17 (30)

Education, n (%) High school or GED

3 (5)

Some college or associate degree

15 (26)

College degree (4yr/post-graduate)

39 (69)

Household income, n (%) < $50,000

6 (11)

$50,000 - $74,999

8 (14)

$75,000 or more

43 (75)

Job Category, n (%) Administrative/clerical

16 (28)

Technical

12 (21)

Professional

11 (19)

Management (executive, middle, supervisory)

19 (33)

Overall health, n (%) Excellent

6 (10)

Very good

30 (53)

Good or fair

21 (37)

Seen for a routine checkup in past year, n (%)

55 (97)

No lifetime tobacco use, n (%)

40 (70)

Sleep 6 to 8 hours, n (%)

56 (98)

Overweight, n (%)

38 (67)

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Fitness, n (%) Very fit or fit

24 (42)

Needs work or out of shape

33 (58)

Chronic health conditions, n (%) None

24 (42)

One to two

28 (49)

Three to four

5 (9)

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 Exploring Early Adopter Baby Boomers’ Approach to Managing Their Health and Healthcare

Table 2. Focus group interview question by patient 3.0 profile domains Patient 3.0 Domain

Focus Group Question

Opening Question

1. What would make it easier for you to be more active in managing your health?

Domain 1: Provider Relationships

2. What would make it easier for you to work with your healthcare provider to better manage your health?

Domain 2: Health Information

3. What would make it easier for you to find and use health information to better understand and manage your health?

Domain 3: Consumer Health Technology

4. What would make it easier for you to use technology to better manage your health?

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RESULTS The themes that arose in focus group discussions were largely consistent with the behavioral descriptors provided by Gagnon and Chartier (2012) across the three domains of the Patient 3.0 Profile (Table 3). The greatest deviations were in the provider relationship and consumer health technology domains. Analogous to the descriptors in the provider domain, early adopter baby boomers expect to have give-and-take in discussions with their providers about their health – both to inform and learn from providers. In general, they do their “homework” before and after office visits to prepare for participation in problem-solving and decision-making. In contrast to the Patient 3.0 Profile, however, early adopter baby boomers see themselves as the ultimate decision-maker rather than being a member of the team making decisions. Despite boomers’ preference for maintaining a collaborative relationship with their providers, they feel some providers do not have the time for, or interest in, engaging with them collaboratively. Last, rather than merely considering the cost of care as described in the Patient 3.0 Profile, they want to actively manage the cost of their care – although they point out that finding and understanding cost information is challenging. Within the health information domain, early adopter baby boomers are adept at finding and critically assessing health information to understand and weigh their options for health maintenance and condition management. Nevertheless, they want help from their providers to identify appropriate and trustworthy information resources, especially on the Internet. For the third domain, early adopter baby boomers embrace consumer health technologies (CHT) offered through their healthcare providers. They embrace patient portals to access their health records, and email and text messaging to communicate with their provider and healthcare team. However, not being able to share the information stored in portals with others was frustrating. And, being able to add information to their records through portals was not mentioned. Boomers also welcome with excitement the diet and activity tracking tools and incentives offered through their employee health and wellness plans to support healthy behaviors. Largely absent, however, were discussions about technologies that assist with diagnosis, treatment, and management of health conditions (e.g., chronic disease management, telehealth, telemedicine, and telemonitoring). Only themes that surfaced in at least five of the six focus groups (column 2 of Table 3) are reported. Most themes are comparable to descriptors in the Patient 3.0 Profile (column 1 of Table 3). However, a few behaviors from the Patient 3.0 Profile were not discussed in the focus groups (i.e., denoted as “gaps” in column 3 of Table 3) and early adopters described several difficulties in carrying out 3.0 Behaviors (denoted as “challenges” in column 3 of Table 3). Themes that deviated notably from the Patient 3.0

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 Exploring Early Adopter Baby Boomers’ Approach to Managing Their Health and Healthcare

Profile descriptors, descriptors not discussed, and challenges encountered are delineated below by the research questions related to each Patient 3.0 domain. Quotations (set off in italics and abbreviated for conciseness) are used to showcase evidence and provide contextual richness for the themes. More complete quotations are provided in Table 4 of the Appendix. Table 3. Comparison of patient 3.0 behaviors and primary themes by engagement domain and research question Patient 3.0 Profile Behaviors*

Baby Boomer 3.0 Themes Behaviors^

Gaps and Challenges+

Domain 1: Works With Healthcare Providers to Manage Health and Healthcare (RQ 1) A. Shares information, asks questions, and deepens knowledge concerning health situation, treatment, medication and options B. Discusses and assesses different approaches to care and expresses point of view C. Agrees to be guided in understanding health situation and exercise critical thinking

1. Shares knowledge with, asks questions of, and seeks opinion of healthcare providers 2. Engages in problem-solving and decision-making with healthcare providers

D. Acts as a primary member of healthcare team

3. Expects to make final decisions with healthcare provider’s input

E. Considers cost in treatment decisions

4. Manages healthcare costs to save money and verify charges

• Some healthcare providers not interested in collaboration (2)

• Difficult to get detailed information to control costs (2)

Domain 2: Finds and Uses Health Information to Manage Health and Healthcare (RQ 2) A. Increases understanding of health, care, treatment, and health problems either online or in print, or with others with similar conditions

1. Understands personal health situation and care options

B. Compares views, opinions, and information about problems, symptoms, treatments, etc.

2. Compares views and information to guide problem-solving & decisionmaking

C. Takes steps to prevent illness and aggravation of health problems

3. Works to maintain health, and alleviate or prevent health problems

D. Searches appropriate and secured health information

4. Critically assesses the quality of health information found on the Internet

• Difficult to ensure health information on Internet is relevant, accurate and current (2)

• Hard to identify trusted online resources (2)

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Domain 3: Uses Consumer Health Technologies to Manage Health and Healthcare (RQ 3) A. Consults medical records online and adds personal health information to records online

1. Likes using the patient portal to view personal health information and health checklists

• No personal health information added to records online (1) • Unable to share electronically (2)

B. Communicates electronically with healthcare providers and to make appointments, etc.

2. Prefers electronic communication (email, SMS) for appointments, medication refills, and asking discrete health questions

• Communication preferences not proactively accommodated (2)

C. Manages healthcare and treatment by using CHT for measuring, monitoring, diagnosis, communication, exercises, treatment, etc.

3. Uses self-management tools to support and reinforce healthy behaviors (e.g., diet & activity)

• No CHT used for diagnosis, management or treatment (1)

* Patient 3.0 behaviors adapted from Gagnon & Chartier (2012) Table 1. Citizen-patient 3.0 behavioral profile, p. 43 ^ Patient 3.0 behaviors described in at least five out of six focus groups + Gaps (denoted by “1”) and challenges (denoted by “2”) found in at least five out of six focus groups. Gaps represent Patient 3.0 behaviors not discussed in the focus groups. Challenges are difficulties encountered in carrying out behaviors.

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 Exploring Early Adopter Baby Boomers’ Approach to Managing Their Health and Healthcare

Provider Relationships (Domain 1) For early adopter baby boomers, an effective relationship with their healthcare providers (RQ 1) involves being able to: (1) share knowledge, ask questions, and hear and seek opinions of healthcare providers, (2) engage in problem-solving and decision-making with healthcare providers by weighing different options, (3) make final decisions with healthcare providers’ input, and (4) manage healthcare costs to save money and verify charges. Notably, boomers see themselves as making final decisions rather than their providers, find some providers do not encourage collaboration, and experience considerable challenges in managing healthcare costs. Early adopter baby boomers want to make the final decision with their doctors’ guidance, even if they decide to defer to the doctor. They advocate doing “your homework” and getting “more educated” so you can “make your own decisions” [FG 6]. The following comments further illustrate how they think about their role as decision-makers: “I was able to reach a conclusion” [FG 2], “Did we [patient and spouse] want to say yes or no?” [FG 2], “My doctor was completely against it …, but I decided …” [FG 2]. They want to be given options, “that way they can make their own decisions … [about] what’s the best option for you as opposed” to being told what to do [FG 5]. Boomers are frustrated with healthcare providers that are not interested in hearing their opinions, do not acknowledge their goals, or support their right to make decisions. They are irritated by doctors that tell them “I want you to do this” [FG 6] or refuse to consider options, “No, you are going to have to go ahead and start taking some more pills” [FG 1]. In response, they sometimes “find another doctor” [FG 1] or “exaggerate symptoms with the doctor so that they’ll dig deeper” [FG 4]. Other times, they acquiesce and concede they need to “learn how to stand up to my doctor” [FG 2]. When examples were given of doctors not respecting the individual’s right to inquire, problem-solve or make decisions, other focus group members advise,

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You are in charge of your health, you’re in charge of your destiny, and it’s really important to take action. … You have to take charge. … If you’re not happy, you find someone else [FG 3]. Regarding healthcare costs, being insured did not preclude baby boomers in this study from trying to understand and manage their costs. They want the best value for the lowest cost. However, they struggle to find the information needed to identify, compare and verify costs before service, and understand their billing statements after service. They find insurance guidelines on what is covered and how much insurance will pay “hard to read and understand” [FG5]. They receive too many bills from different sources, “Every single group has their own billing” [FG 2]. Billing statements are not itemized, “We only get to see one or two [of the itemized costs]” [FG 4] making costs hard to decipher, “It’s enough to make you have a heart attack!” [FG 2]

Health Information (Domain 2) In line with the Patient 3.0 Profile, early adopter baby boomers are adept at finding and using health information to manage their health and healthcare (RQ 2) to (1) understand their health situation and healthcare options, (2) compare viewpoints and information to guide problem-solving and decisionmaking, and (3) maintain health, and alleviate or prevent health problems. However, finding appropriate and secure information online is difficult according to boomers. They spend time trying to “weed out” 298

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 Exploring Early Adopter Baby Boomers’ Approach to Managing Their Health and Healthcare

the “nonsense” [FG 5] and “bad information” [FG 6], and identifying “good,” “correct,” “current,” or “trusted” information [FG 3]. They are concerned about taking up the doctor’s time with inaccurate or irrelevant information. [My doctor] is the expert… [He] may not be able to spend a half an hour with me, of course not. But … maybe if I had nurse practitioner … or some other way …, even electronically … that I could get my questions answered. [FG 5] To ensure they have “good” information, they want their doctors to endorse, curate, or provide appropriate health information. Participants agree that the best way to ensure they get “correct information” [FG 3] is to be guided to information resources that are “endorsed by physicians” or hosted on their providers’ website [FG 6].

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Consumer Health Technology (Domain 3) The themes in the CHT domain are aligned with some, but not all, of the behaviors described in the Patient 3.0 Profile (RQ 3). Consistent with the profile descriptors, early adopter baby boomers like using: (1) patient portals to access personal health information and view health indicators and checklists, (2) electronic communications, such as text messaging and email, for appointment reminders, prescription refills and consultation about discrete health issues, and (3) self-management tools to support and reinforce healthy behaviors. However, boomers are frustrated with being unable to electronically share information in patient portals with others of their choosing. Despite early adopters’ preference for communicating electronically, they recognize that not all members of their generation “like [using] technology.” So, boomers recommend that healthcare providers use the communication method preferred by the patient. Finally, adding personal health information to records online and use of CHT for diagnosis, management, and treatment of health conditions were conspicuously absent from focus group discussions. Related to the use of online health records, boomers discussed one challenge and omitted from discussion one of the 3.0 behavioral descriptors. A prominent complaint about patient portals is the inability to electronically share information “with the emergency room [or] a doctor that’s not in [their provider’s] network” [FG 6]. Boomers complain about having to “fill out … forms over and over again” [FG 4] when they change doctors, see a specialist, or go to the emergency room. While inconvenient, they are even more concerned about forgetting important information because their “memory is not what it used to be” [FG 3] or relaying information inaccurately because “if you don’t feel good, sometimes you don’t regurgitate [sic] the information correctly” [FG 2]. Contrary to the Patient 3.0 Profile, no mention was made of adding personal health information to online health records. Boomers are elated when given the opportunity to communicate electronically with their healthcare providers or members of their provider’s team such as “a nurse practitioner” or “if it is prescriptionrelated it could be a phone nurse [FG 3]. Interestingly, with email, boomers think that healthcare providers respond, “when they have time” and after having “pulled my chart” [FG 6]. In contrast, with the phone, boomers think providers call back in a rush and without having viewed their chart. Despite their preference for electronic communications, early adopters see their generation as “a real mixture. … Some [are] really technical[ly] savvy and some aren’t” [FG 1]. Hence, they suggest that providers “interact with the patient [using] the patient’s chosen method” [FG 3] when providing health information (printed or electronic materials) or communicating (phone, email, text messaging). 299

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 Exploring Early Adopter Baby Boomers’ Approach to Managing Their Health and Healthcare

Last, the use of CHT to track and monitor healthy behaviors is popular among early adopters. Boomers describe using “apps and gadgets and toys” [FG 6] for diet and activity tracking. Improvements in health indicators – such as weight reduction and lower cholesterol or blood pressure values – were extolled as benefits of these devices and the behaviors they support. Incentives offered through employee benefit plans for using these self-management tools and reporting results were strong motivators. Boomers are positive about incentives ranging from gift cards, reduced insurance costs, and points awarded for participation. Noticeably absent, however, were discussions about CHT use for diagnosis and treatment (i.e., telehealth/telemedicine) and chronic disease management.

DISCUSSION This study describes early adopter baby boomers’ enactment of three consumer-patient engagement strategies. Guided by the Patient 3.0 Profile (Gagnon & Chartier, 2012), our research questions examine early adopter baby boomers’ approach to managing their health and healthcare in three domains: (1) working with healthcare providers, (2) finding and using health information, and (3) using consumer health technology (CHT). The Patient 3.0 Profile lays out behavioral expectations for an ideal type of consumer-patient in each of these three engagement domains. Our results provide a comprehensive, detailed self-report of participants’ experiences in each domain. As such, this is the first study to our knowledge that grounds these ideal descriptors in the practices of consumer-patients, generally, and baby boomers, specifically. As Rogers (2003) aptly points out, studying innovations during implementation from the perspectives of adopters may reveal interrelationships and prompt adaptations that lead to more widespread adoption. As discussed below, the interdependence among the three engagement strategies became apparent in baby boomers’ descriptions. Also, early adopter baby boomers’ experiences suggest several refinements to the Patient 3.0 Profile as well as recommendations for engagement research and practice.

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Implications for Theory, Research and Practice Based upon study results, we propose a visual representation of the Patient 3.0 Profile. The visual recognizes the interdependence of the three domains. Also represented are the influences of personal agency and health system characteristics on consumer-patients’ ability to effectively engage in the management of their health and healthcare. Second, we offer refinements to the Patient 3.0 Profile behavioral descriptors by incorporating the perspectives and experiences of baby boomers as consumer-patients. Last, we use the behavioral descriptors omitted from baby boomers’ discussions and the challenges they encountered in carrying out the described behaviors to outline implications for research and practice. We propose a visual representation that places the three engagement domains in a Venn diagram (Figure 2). In the diagram, the concept, “take responsibility” (Gagnon & Chartier, 2012, p. 43), is in the center aligning the engagement theory with baby boomers’ perspectives and the patient-centered model of care (Millenson & Berenson, 2015). The circle for the Provider Relationship domain is larger than the other two circles reflecting the primacy attributed by early adopter baby boomers to this domain. The overlapping portions of the circles draw attention to the interdependence among the domains while the non-overlapping areas recognize independent action by consumer-patients in each domain. By portraying the three domains as a Venn diagram, the three engagement strategies are visualized as an integrated 300

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 Exploring Early Adopter Baby Boomers’ Approach to Managing Their Health and Healthcare

whole. As such, competence in all domains culminates in a consumer-patient fully capable of acting autonomously and performing effectively as a member of the healthcare team. In addition to the Venn diagram, two arrowed bars are placed on either side of the Venn diagram. The bars signify the influences of personal agency and health system characteristics on the ability of consumer-patients to carry out the behaviors described in each domain. The personal agency bar recognizes that consumer-patients’ level of motivation, skills, and biological capacity (Bandura, 1986; Ford, 1992) influences their ability to engage in managing their health and healthcare. The bar representing health system characteristics signifies the contributions of the health system in patient engagement – including the areas requiring further development (i.e., omissions and challenges of baby boomers).

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Figure 2. Visual representation of refined Patient 3.0 Profile based upon findings

As presented in column 2 of Table 3 in the results section, the most far-reaching refinements to the Patient 3.0 Profile are the behavioral descriptors in the Provider Relationship domain. Early adopter baby boomers want to participate in give-and-take, question-and-answers with their providers as described in the Patient 3.0 Profile. Gagnon & Chartier (2012) describe consumer-patient’s role as “expressing their point view” about various approaches to care and “being guided” in their understanding and exercise of critical thinking (p. 43). Boomers, however, see themselves as being more integral to the problem-solving and decision-making processes. They have essential knowledge and insights they want to contribute during diagnoses, and opinions they want to be considered in weighing management and treatment options. Most strikingly, when it comes to decision-making, they see themselves as the final decision-maker, albeit with their healthcare providers input. This contrasts with being a “primary member” of the healthcare team who “receives” guidance from team members (Gagnon & Chartier, 2012, p. 43).

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 Exploring Early Adopter Baby Boomers’ Approach to Managing Their Health and Healthcare

Overall, baby boomers give greater emphasis to patient preferences, needs, and values than in the original behavioral descriptors. This emphasis is consistent with the transition to patient-centered care in the US healthcare system (US Congress, 2015). The challenges baby boomers encounter finding providers with the time or inclination to work collaboratively may reflect uneven progress in healthcare providers’ adjustment to providing patient-centered care (Dwamena, et al., 2012). Alternately, these challenges may also reflect the pressures being placed on providers to see more patients in less time (Elwyn, Frosch, & Kobrin, 2016). Rapid patient throughput may leave providers little time to encourage questions, discuss information gathered outside of the visit, offer care options, and weigh the pros and cons with patients to facilitate patient decision-making (Xu & Wells, 2016). Another contrast in the Provider domain relates to “considering cost in treatment decisions.” Rather than merely “considering” cost, boomers work to actively manage costs by understanding their insurance coverage, shopping for the best value at a reasonable cost, and reconciling charges with services rendered. Despite these efforts, they find it difficult to understand their insurance coverage and acquire the necessary detailed price and billing information needed to manage costs. Products to compare the costs of healthcare services are increasingly offered through providers, insurers, employers, state agencies, and – more recently – direct-to-consumer (Consumer Reports, 2016). However, the limited research conducted on price estimators that do not include quality indicators has failed to find cost savings (Desai, Hatfield, Hicks, Chernew, & Mehrotra, 2016). Products that include quality measures along with prices are less available to consumers (Rosenkrantz & Doshi, 2016). Even when quality indicators are presented, they are not at the individual provider level (Consumer Reports, 2016) making price-quality comparisons difficult. In the Health Information domain, the primary departure from behavioral descriptors relates to searching “appropriate and secure information” (Gagnon & Chartier, 2012, p. 43). In the Patient 3.0 Profile, the availability of appropriate and secure information is assumed, and the task of consumer-patients is to know how to search that information and use it effectively. The early adopter baby boomers in our study demonstrate a strong sense of personal agency and well-developed skills in their descriptions of sophisticated techniques to locate, and then, critically assess the appropriateness and trustworthiness of online health information. Otherwise, descriptors in the Health Information domain of the original Patient 3.0 Profile closely resemble early adopter baby boomers’ descriptors. Challenges encountered by baby boomers in the Health Information domain reinforce the welldocumented weaknesses in online health information resources (Berland, et al., 2001; Lambert, Mullan, Mansfield, Koukomous, & Mesiti, 2017; Lynch, et al., 2017). Furthermore, their discussions echo calls for mechanisms to insure the quality and relevance of online information (Boyer & Geissbuhler, 2005; Morahan-Martin, 2004; Whitten, Nazione, & Lauckner, 2013). Baby boomers want providers to validate information patients’ find online or create, curate, or endorse “appropriate and secured” health information (Gagnon & Chartier, 2012, p. 43). However, providers’ reticence may emanate from a lack of time and resources to undertake these tasks (Kim & Kim, 2009; Tonsaker, Bartlett, & Trpkov, 2014). Shifts toward patient-centered care and value-based reimbursement are expected to align provider incentives and organizational policies to support all three engagement strategies (Millenson & Berenson, 2015). But, new tensions may arise between quality measures that encourage providers to follow evidence-based practice guidelines and patients’ preferences (Xu & Wells, 2016). Participants did not reframe the behavioral descriptors in the Consumer Health Technology (CHT) domain in meaningfully different ways. However, they did encounter challenges in carrying out several engagement behaviors and some behaviors listed in the profile did not come up in focus group discussions. 302

Research Anthology on Improving Health Literacy Through Patient Communication and Mass Media, edited by Association, Information Resources Management, IGI Global, 2021. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/nyulibrary-ebooks/detail.action?docID=6686709. Created from nyulibrary-ebooks on 2021-09-02 06:30:41.

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 Exploring Early Adopter Baby Boomers’ Approach to Managing Their Health and Healthcare

These omissions along with challenges encountered point to areas for further research and development. Results indicate that early adopter baby boomers access their medical records online through their providers’ patient portals. They appreciate being able to communicate with their providers using email and text messaging. And, they find value in using diet and activity trackers incentivized through wellness programs offered through their employers. However, sharing the personal health information stored in patient portals across healthcare providers (e.g., specialists) and care settings (e.g., ER) remains a challenge. As Klein, et al. (2017) point out, the inabilty to exchange information across providers is common unless providers are in the same healthcare system and use the same electronic health record system. Our study participants go to great lengths to share information across providers and like communicating electronically. Still, they recognize that some boomers find electronic tools less appealing and more challenging to use. Recent research has shown patient preferences for electronic communications vary by socioeconomic and demographic characteristics (Gordon & Hornbrook, 2016; Tennant et al., 2015). Research has also shown that physicians are interested in aligning practices with patients’ preferences, especially when sharing bad news (Choudhry, et al., 2015). Baby boomers’ suggestion that providers ask patients for their communication preferences and store preferences in patient profiles might allow providers to identify likely adopters of engagement strategies as well as improve patient satisfaction with services. That focus group discussions did not address all of the CHT tools envisioned in the Patient 3.0 Profile may reflect the availability of these tools to patients. While baby boomers eagerly accessed their health information via patient portals, adding personal health information to medical records online was not discussed. The lack of inclusion of patient-generated information in the patients’ record has been documented elsewhere (Hartzler, et al., 2017; Jensen, et al., 2015; Joe, Hall, Chi, Thompson, & Demiris, 2017). Limited availability of this capability is due to unresolved barriers about how to ensure the validity of patient reported data as well as how and what data to collect and present to providers (Harle, et al., 2016). Advancements in data analytics hold promise of resolving the issues with patient-generated data (Cronin, Fabbri, Denny, Rosenbloom, & Jackson, 2017; Moreira, Rodrigues, Kumar, Al-Muhtadi, & Korotaev, 2017). Baby boomers’ excitement about being able to email their healthcare providers relevant personal health information indicates their willingness to utilize this function when available. The use of CHT for evaluation, diagnosis, treatment, and management of health (e.g., telemedicine, telemonitoring, chronic disease self-management) was also absent from focus group discussions. Again, the lack of discussion around these topics may reflect the limited availability of these services in the region (T. Hale, personal communications, November 6, 2014). Alternately, the omission could reflect a belief by boomers that such services require too much time and effort on the part of their providers— as reflected in comments made after the end of one focus group. The literature indicates CHT use by consumer-patients is being encouraged. There is a heavy reliance on the healthcare system to offer CHT capabilities (Kruse, Bolton, & Freriks, 2015; Shah & Liebovitz, 2017). Increasingly, employee wellness programs incentivize CHT use (Anderko, et al., 2012; Loeppke, Edington, Bender, & Reynolds, 2013; MetLife, 2016; Olson, 2016). However, return on investment of CHT remains unproven (Demiris & Kneale, 2015; Wildevuur & Simonse, 2015) and the negative impact of CHT on provider productivity remains a concern (Jensen et al., 2015; Harle et al., 2015). Further research is needed on the impact of CHT on patient engagement, provider workflow and productivity, and patient health outcomes, wellness, and health management over time.

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 Exploring Early Adopter Baby Boomers’ Approach to Managing Their Health and Healthcare

Study Limitations

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Canadian scholars Gagnon and Chartier developed the Patient 3.0 Profile. Some of the differences we identify may reflect the different healthcare financing models in Canada and US. While Gagnon and Chartier drew on the gray and research literature to develop the profile, they may have also been influenced by their familiarity with the single payer healthcare system in Canada. Our results represent the US consumer-patient perspective and of early adopter baby boomers specifically, rather than the perspectives of those attempting to spur adoption or the broader US patient population. As pointed out by Andreassen, Trondsen, Kummervold, Gammon, and Hjortdahl (2006), answers to the same questions may differ based upon the points of view of those being asked. Although this study contributes to existing theory and provides insights for research and practice, the qualitative method used – focus groups – imposes inherent limitations to generalization. As is the nature of qualitative studies, the sample size is small. Purposive sampling also restricts sample representation to early adopter baby boomers from one urban geographical area (although the organizations from which we sampled represent diverse industries). While a limitation for purposes of generalization, our homogeneous sample of early adopter baby boomers describes how the implementation of the three engagement strategies is experienced from the consumer-patient perspective by this subgroup. Transferring the results to other subgroups or groups with more diverse characteristics should be undertaken with caution. Several steps were taken to protect against selective observation and bias during data collection and analysis. The multidisciplinary makeup of the authors – health informatics, nursing, information science, communication, and public health – provided contrasting perspectives for peer critique. Each of the authors observed one focus group and coded transcripts for at least two other focus groups. All transcripts were coded twice and the first author reviewed codes for all transcripts for consistency. Critical reflection and negative case sampling were used to challenge assumptions. By embracing the three patient engagement strategies, promoters anticipate the rising healthcare costs associated with the aging of the largest generation to enter retirement will be offset by improvements in health status (Garcia et al., 2015; Gaudette et al., 2015). We sought to understand how early adopters of the boomer generation put these innovations to use to inform implementaiton efforts. Therefore, we recruited boomers who wanted to be involved in making decisions about their health and healthcare, had the motivation and skills to self-educate and use a computer, and were healthy enough to be able to act on their behalf. Not all baby boomers will have these predispositions and capabilities. Therefore, further work is required to determine the profiles of other subgroups of baby boomers to meet their needs. Nevertheless, the experiences of early adopters point to refinements needed to encourage adoption by the early majority.

CONCLUSION This formative study is the first to provide empirical evidence for how three engagement strategies (i.e., Provider Relationships, Health Information, and Consumer Health Technology) are put to use by baby boomers. The zest with which participants embrace all three engagement strategies suggests that the baby boomer generation may challenge prior notions about older adults’ passive approach to managing their health and healthcare. Moreover, the behavioral challenges and omissions pinpointed by boomers

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 Exploring Early Adopter Baby Boomers’ Approach to Managing Their Health and Healthcare

provide insights into areas requiring further development and research to support patient effectiveness and encourage widespread adoption. Early adopter baby boomers see the broader healthcare team, health information resources, and consumer health technologies provided through their healthcare provider as an extension of their physician. Therefore, physicians should be encouraged to embrace these adjuncts to their practice. Where appropriate, providers should rely on their healthcare team to answer patient questions, and discuss the pros and cons of care options while bearing in mind patient preferences, values, and needs. Providers and their teams should develop, curate, or recommend appropriate health information resources, and use consumer health technologies. The healthcare system and insurers should disclose cost and coverage information in a format that facilitates value-cost comparisons before purchase and makes reconciliation of services received, billed and paid transparent. Health policy experts, health system decision makers and developers of consumer health technologies should enable consumer-controlled portability of commonly duplicated personal health information. Consumer-patient communication preferences should be incorporated into the functionality of electronic health information systems. New techniques and processes should be developed that leverage patient-generated data and virtual tools in support of patient health management, evaluation, diagnosis, and treatment. Finally, we encourage researchers to consider all three engagement strategies simultaneously to understand how engagement strategies interact to effect patient-consumer behaviors. We also encourage continued exploration of how patient-provider relationships, health information, and consumer health technology work together and separately to support the management of health and healthcare of baby boomers.

ACKNOWLEDGMENT

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The authors would like to thank focus group participants as well as the organizations that facilitated recruitment of their employees for the study and hosted the focus groups. We would also like to recognize Melissa Hogan of the St. Louis Area Business Health Coalition for her assistance in identifying organizations from which to recruit participants. Robert L. Krizek, PhD expertly moderated the focus groups. We thank graduate assistants Barry Davolt for assisting with participant recruitment and focus group logistics, and Richard Welsh for identifying relevant research literature for this publication. This research was supported by the Saint Louis University President’s Research Fund [grant number 8677]. This research was supported by the Saint Louis University President’s Research Fund [grant number 8677]; Des Moines University Iowa Osteopathic Education & Research Fund [grant number 112-3751].

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Loeppke, R., Edington, D., Bender, J., & Reynolds, A. (2013, March). The association of technology in a workplace wellness program with health risk factor reduction. American College of Occupational and Environmental Medicine, 55(3), 259–264. doi:10.1097/JOM.0b013e3182898639 PMID:23439270 Lustria, M. L. A., Smith, S. A., & Hinnant, C. C. (2011). Exploring digital divides: An examination of eHealth technology use in health information seeking, communication and personal health information management in the USA. Health Informatics Journal, 17(3), 224–243. doi:10.1177/1460458211414843 PMID:21937464 Lynch, N. P., Lang, B., Angelov, S., McGarrigle, S. A., Boyle, T. J., Al-Azawi, D., & Connolly, E. M. (2017, April). Breast reconstruction post mastectomy - Let’s Google it: Accessibility, readability and quality of online information. The Breast, 32, 126–129. doi:10.1016/j.breast.2017.01.019 PMID:28178606 Medicare Advisory Commission. (2015, June). Chapter 2: The next generation of Medicare beneficiaries. Report to the Congress: Medicare and the healthcare delivery system. Washington, DC: Author. MetLife. (2016, June 3). The Fitbit craze - wearable tech and employee wellness competitions. Business Insights Wellness Blog. NY, NY: Author. Millenson, M. L., & Berenson, R. A. (2015, October). The road to making patient-centered care real. Washington, D.C.: Urban Institute. Morahan-Martin, J. M. (2004, November). How Internet users find, evaluate, and use online health information: A cross-cultural review. Cyberpsychology & Behavior, 7(5), 497–510. doi:10.1089/ cpb.2004.7.497 PMID:15667044 Moreau, A., Carol, L., Dedianne, M. C., Dupraz, C., Perdrix, C., Lainé, X., & Souweine, G. (2012). What perception do patients have of decision-making (DM)? Toward an integrative patient-centered care model: A qualitative study using focus-group interviews. Patient Education and Counseling, 87(2), 206–211. doi:10.1016/j.pec.2011.08.010 PMID:21903355 Moreira, M. W. L., Rodrigues, J. J. P. C., Kumar, N., Al-Muhtadi, J., & Korotaev, V. (2017). Evolutionary radial basis function network for gestational diabetes data analytics. Journal of Computational Science; Advance online publication. doi:10.1016/j.jocs.2017.07.015

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Olson, P. (2016, January 18). Fitbit’s game plan for making your company healthy [Blog]. Jersey City, NJ: Forbes Media, LCC. Raffaeli, L., Spinsante, S., & Gambi, E. (2016, January-March). Integrated smart TV-based personal ehealth system. International Journal of E-Health and Medical Communications, 7(1), 48–64. doi:10.4018/ IJEHMC.2016010103 Rogers, E. M. (2003). Diffusion of innovations (5th ed.). New York, NY: Free Press. Rosenkrantz, A. B., & Doshi, A. M. (2016, May-June). Public transparency Websites for radiology practices: Prevalence of price, clinical quality, and service quality information. Clinical Imaging, 40(3), 531–534. doi:10.1016/j.clinimag.2015.11.020 PMID:27133699

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Sanders, M. R., Winters, P., Fortuna, R. J., Mendoza, M., Berliant, M., Clark, L., & Fiscella, K. (2013). Internet access and patient portal readiness among patients in a group of inner city safetynet practices. The Journal of Ambulatory Care Management, 36(3), 251–259. doi:10.1097/JAC.0b013e31829702f9 PMID:23748274 Seckin, G., Yeatts, D., Hughes, S., Hudson, C., & Bell, V. (2016). Being an informed consumer of health information and assessment of electronic health literacy in a national sample of internet users: Validity and reliability of the e-HLS Instrument. Journal of Medical Internet Research, 18(7), e161. doi:10.2196/ jmir.5496 PMID:27400726 Shah, S. D., & Liebovitz, D. (2017, May). It takes two to tango: Engaging patients and providers with portals. Prevention Physical Medicine and Rehabilitation, 9(5 Suppl.), S85–S97. doi:10.1016/j. pmrj.2017.02.005 PMID:28527507 Song, M. K., & Ward, S. E. (2014, October). The extent of informed decision-making about starting dialysis: Does patients’ age matter? Journal of Nephrology, 27(5), 571–576. doi:10.100740620-0140061-4 PMID:24519843 Spooner, K. K., Salemi, J. L., Salihu, H. M., & Zoorob, R. J. (2016). eHealth patient-provider communication in the United States: Interest, inequalities, and predictors. Journal of the American Medical Informatics Association. doi:10.1093/jamia/ocw087 PMID:27497797 Taha, J., Sharit, J., & Czaja, S. J. (2014, June). The impact of numeracy ability and technology skills on older adults’ performance of health management tasks using a patient portal. Journal of Applied Gerontology, 33(4), 416–436. doi:10.1177/0733464812447283 PMID:24781964 Tennant, B., Stellefson, M., Dodd, V., Chaney, B., Chaney, D., Paige, S., & Alber, J. (2015). eHealth literacy and Web 2.0 health information seeking behaviors among baby boomers and older adults. Journal of Medical Internet Research, 17(3), e70. doi:10.2196/jmir.3992 PMID:25783036 Tonsaker, T., Bartlett, G., & Trpkov, C. (2014, May). Health information on the Internet: Gold mine or minefield? Canadian Family Physician Medecin de Famille Canadien, 60(5), 407–408. PMID:24828994 Tracy, S. J. (2013). Qualitative research methods: Collecting evidence, crafting analysis, communicating impact. West Sussex, UK: John Wiley & Sons, Ltd.

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U. S. Center for Medicare & Medicaid Services. (2013). Chapter 2: Medicare enrollment. Medicare & Medicaid Research Review [Statistical Supplement]. Baltimore, MD: Author. Retrieved from https:// www.cms.gov/Research-Statistics-Data-and-Systems/Statistics-Trends-and-Reports/MedicareMedicaidStatSupp/ U. S. Congress. (2010, March 23). Patient Protection and Affordable Care Act, H.R. 3590, Public Law 111-148. U. S. Congress. (2015, April 16). Medicare Access and CHIP Reauthorization Act (MACRA), Public Law 114-10, 114th Congress.

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U. S. Congress. (2009, February 17). Health Information Technology for Economic and Clinical Health (HITECH), Title XIII of Division A and Title IV of Division B of the American Recovery and Reinvestment Act of 2009 (ARRA), Pub. L. No. 111-5, 123 Stat. 226, Washington, D. C.: U. S. Government Printing Office. van den Brink-Muinen, A., van Dulmen, S. M., de Haes, H. C. J. M., Visser, A. P., Schellevis, F. G., & Bensing, J. M. (2006). Has patients’ involvement in the decision-making process changed over time? Health Expectations, 9(4), 333–342. doi:10.1111/j.1369-7625.2006.00413.x PMID:17083560 Whitten, P., Nazione, S., & Lauckner, C. (2013). Tools for assessing the quality and accessibility of online health information: Initial testing among breast cancer websites. Informatics for Health & Social Care, 38(4), 366–381. doi:10.3109/17538157.2013.812644 PMID:23957628 Wildevuur, S. E., & Simonse, L. W. L. (2015, March). Information and communication technology–enabled person-centered care for the “big five” chronic conditions: Scoping review. Journal of Medical Internet Research, 17(3), e77. doi:10.2196/jmir.3687 PMID:25831199 Winbush, G. B., McDougle, L., Labranche, L., Khan, S., & Tolliver, S. (2013, November). Health Empowerment Technologies (HET): Building a web-based tool to empower older African American patient-doctor relationships. Journal of Health Care for the Poor and Underserved, 24(4A Suppl. 4), 106–117. doi:10.1353/hpu.2014.0017 PMID:24241265 Xu, Y., & Wells, P. S. (2016). Getting (along) with the guidelines: Reconciling patient autonomy and quality improvement through shared decision-making. Academic Medicine, 91(7), 925–929. doi:10.1097/ ACM.0000000000001101 PMID:26839943 Zarour, K. (2017, October-December). Towards a telehomecare in Algeria: Case of diabetes measurement and remote monitoring. International Journal of E-Health and Medical Communications, 8(4), 61–80. doi:10.4018/IJEHMC.2017100104

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This research was previously published in the International Journal of E-Health and Medical Communications (IJEHMC), 10(1); pages 94-117, copyright year 2019 by IGI Publishing (an imprint of IGI Global).

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Exploring Early Adopter Baby Boomers’ Approach to Managing Their Health and Healthcare

APPENDIX: SUPPORITNG QUOATIONS Table 4. Supporting quotations for baby boomer 3.0 themes by patient 3.0 domain and research question Baby Boomer 3.0 Themes

Baby Boomer 3.0 Supporting Quotations

Domain 1: Works With Healthcare Providers to Manage Health and Healthcare (RQ 1) Behaviors^ 1. Shares knowledge with, asks questions of, and seeks opinion of healthcare providers

I needed to research high cholesterol. … I took [the] information [from family members and searching the Internet] to my doctor and sought the answers from my doctor [about] what I didn’t understand. And I was able to reach a conclusion that way [FG 2].

2. Engages in problem-solving and decision-making with healthcare providers

I like the options idea. I am all about choice. … I [also] want somebody … who is going to actually listen to what I have say because I’ve lived in this body and just because you think it could be this, wait a minute I’ve lived here, it’s been like this for 30 years, and that’s normal for me. … If they give me some choices, like Paul said, “Well, we could try A, we could try B, we could try C.” I think that is the best way to talk to anybody, ever; but especially people of this generation, because they’re used to taking control of their own lives [FG 5].

3. Expects to make final decisions with healthcare provider’s input

Well, my husband has an MRI every six months …. They gave us the actual CD … and we could look at his tumors before and after the surgery. … We didn’t do the analysis, the doctor did, but we at least could make informed decisions about what we wanted to do. “Did we think it was time for surgery if the doctor recommended it? Did we want to say yes or no?” [FG 2]

4. Manages healthcare costs to save money and verify charges

I do have some prescriptions that I only take every other day instead of everyday to save money [FG 4]. I’ll go look things up on Web MD or different sites - Google it and find out what it says out there before I go to a doctor because it costs money to go to a doctor [FG 3]. To get as much [insurance] coverage as you possibly can … I wish I wouldn’t have to shop around if I have to have my gall bladder taken out or whatever [FG 2].

1. Some healthcare providers not interested in collaboration (1)

When I went back [to my doctor] the last time, the last thing I wanted to do was take pills. I am like, “I really don’t. If you just give me a few more months. Let me work on my food and exercise.” They said, “No. You are going to have to go ahead and start taking some more pills.” My goal was to get off these [FG 1].

2. Difficult to get detailed information to control costs (1)

When we’re trying to do cost control [for] a procedure, we don’t know how many different parties have to be part of it. So, when we are trying to do our own analysis, we only get to see one or two [of the itemized costs] and the [bill] is missing three or four more [FG4]. Billing, oh my God! It’s enough to make you have a heart attack …. every single group has their own billing [FG 2].

Challenges & Gaps+

Domain 2: Finds and Uses Health Information to Manage Health and Healthcare (RQ 2)

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Behaviors^

1. Understands personal health situation and care options

I try to monitor whether or not the problem I am having is serious enough to get help for, or is it something that I shouldn’t worry about [FG 1]. I … found pictures [on the Internet] of [what I had] on other people. … Then I went to my doctor and said, “Is this what it is?” [FG 2] When I go home [after seeing the doctor], “Ok Web MD, what does this mean?” [FG 3] A lot of times you find more information while reading than what [the doctor has] shared [FG 2]. I always read all the fine print and I’m like, “You should not be taking this. … You need something that’s going to treat this condition that isn’t going to interfere with your blood pressure medication” [FG 3].

2. Compares views and information to increase understanding and guide problem-solving and decisionmaking

I was … reading [blogs]… [and] saw [videos of] these people talking about… what happened to them, or what was good and what was bad; I felt more of a kinship with them ... because it became more real to me [FG 2]. I don’t like to take a lot of medication, so I’m always trying to use the Internet to look for natural remedies … [FG 5].

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Exploring Early Adopter Baby Boomers’ Approach to Managing Their Health and Healthcare

Table 4. Continued Baby Boomer 3.0 Themes

Baby Boomer 3.0 Supporting Quotations

3. Works to maintain health, and alleviate or prevent health problems

[I like] being able to get information … [about] affordable gym memberships or activities that you can do either on a one-on-one basis or in a group … because an active person is a healthy person [FG 4]. I have also used the Internet to identify which poisonous plants are growing at the base of the tree in my yard, “Is this poison ivy or is this poison oak?” ... So, then I don’t get in it [FG 2]. I’m ready when I go to the doctor; maybe I’ve tried some things that I’ve read online to reduce my potassium or fix my knee inflammation. So, when I go [to the doctor] I can say, “Well, I’ve been trying that for two weeks, so let’s move ahead” [FG 5]. I looked up pre-diabetes and … [started] weighing the choices, “Do I want to be injecting insulin … or … lose this much weight?” [FG 1]

4. Critically assesses the quality of health information found on the Internet

I have the WebMD app on my phone. … If I am looking up a certain thing, like diabetes, I will look [at WebMD] and … the American Diabetes Association [FG 1]. How many different sources do you look at to see what’s the same in order to decide that “maybe this is the right answer because I found it in three out of five websites [FG 2]? Challenges & Gaps+

1. Difficult to ensure health information on Internet is relevant, accurate and current (1)

You go to read the Internet [and] there’s a lot of information, but you’ve got to weed … out … a lot of … nonsense [FG 5]. While you may trust the Mayo Clinic … you may inadvertently end up some place else [like] the Mayonaze [sic] Clinic and get bad information [FG 6].

2. Hard to identify trusted online resources (1)

If you could say this is a trusted website … then it would cut out all of the comparison. … I have asked [my doctor] … “[Is this] a trusted site?” [FG 1] Having the physician or some healthcare people say “These are good resources” … sort of endorsed by physicians, that would be [good] [FG 6].

Domain 3: Uses Consumer Health Technologies to Manage Health and Healthcare (RQ 3)

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Behaviors^

1. Likes using the patient portal to view personal health information and health checklists

[My doctor] removed some sort of thing, and I couldn’t remember what it was called because you’re in the office and you’re trying to take notes and you don’t know how it’s spelled and you feel silly asking. I have online access to my medical record and I could just read her notes and see exactly what it was she did. That was really helpful to me [FG 3]. My memory is not what it used to be. … [I like] just being able to go online and look up my record to jog my memory about something [FG 3]. I would rather listen to her and know that I’m going to have those notes at the end rather than trying to write it all down to make sure I’m catching everything, spelling everything correctly [FG 3]. You can go in see your profile, see what’s coming up you know like it’s in red, you’re overdue two years for colonoscopy or whatever [FG 4]. Know what’s in [your medical record]. … If something does come up … you’ve got a track record … [to look at and say], “Ok. I’m starting to have a problem or this might turn into a problem or whatever” [FG 3].

2. Prefers electronic communication (email, SMS) for appointments, medication refills, and asking discrete health questions

I can email [my doctor] and expect a response back within 24 hours …. I can just ask a question and get a response back … and if it’s not her, it’s the nurse practitioner. If its prescription related it could be a phone nurse [FG 3]. I had an appointment and they sent the form to me via email to fill it out so it’s completed when you walk in … saving time and aggravation [FG 4]. I’ll go online … [for] a prescription refill much quicker than I’ll make a phone call. Even if it’s making an appointment… I want to do it online [FG6]. I feel more confidence that if a doctor is emailing me and responding to me that they might have actually pulled my chart and looked at it because they’re doing it when they have time as opposed to “I need it now!” [FG 6]

3. Uses self-management tools to support and reinforce healthy behaviors (e.g., diet and activity)

[I like] apps and gadgets and toys, especially ones that come with incentives. … I just had my blood work done. Everything … [the doctors] measure is like 50% better than it was last year [FG 6].

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Exploring Early Adopter Baby Boomers’ Approach to Managing Their Health and Healthcare

Table 4. Continued Baby Boomer 3.0 Themes

Baby Boomer 3.0 Supporting Quotations Challenges & Gaps+

1. No personal health information added to records online (2)

I have high blood pressure and he wanted like me to take it every day, he wanted me to put it in an email to him [FG 4].

2. Unable to share electronically (1)

[I would like to] have that app with me to share with the emergency room [or] a doctor that’s not in the network [FG 6]. It would be nice if [your health information] was linked to specialists outside the group because … if you’re sick and you don’t feel good, sometimes you don’t regurgitate the information correctly [FG 2].

3. Communication preferences not proactively accommodated (1)

[Doctors should have] a variety of ways to communicate so that you are interacting with the patient in the patients chosen method. … I would rather email than call, but somebody else may want to call … so just communicating in a variety of ways [FG 6].

4. No CHT used for diagnosis or treatment (2)

If all I’m trying to do is ask [my doctor] a question, I don’t need to see him. I can just say an email; … if you start doing [video chat], how much of his time is taken away for doing that [FG 4]?

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^ Patient 3.0 behaviors described in at least five out of six focus groups + Gaps (denoted by “1”) and challenges (denoted by “2”) found in at least five out of six focus groups. Gaps represent Patient 3.0 behaviors not discussed in the focus groups. Challenges are difficulties encountered in carrying out behaviors.

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Section 4

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Social Media and Virtual Support Groups

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Chapter 18

Exploring Healthy Connection: Communication, Social Networks, and Wellbeing Jessica L. Moore Butler University, USA

ABSTRACT Virtual social connection has become a way of life for many people. The continued implementation of new technologies in social interaction presents an ever-escalating need for researchers and practitioners to understand the implications of mediated interaction and virtual communities on human health and wellbeing. Accordingly, this chapter presents research on the salience of communication and social bonds in relation to human health and wellbeing, explores ways in which individual as well as relational health and wellbeing are affected by the use of social network sites, and argues a case for research on the health-related functions of expressive narratives in virtual settings such as online social networks. Considerations and future directions for research of these issues conclude this chapter.

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INTRODUCTION Establishing healthy social connections can buffer stress and help people cope with a variety of expected and unexpected events in life. And more than ever people are turning to virtual spaces in order to make social connections. This chapter explores the research related to establishing and maintaining social connections as well as the communicative processes that hinder and enhance health and wellbeing. Towards that end, this chapter establishes the salience of communication and social bonds in relation to human health and wellbeing, explores ways in which individual as well as relational health and wellbeing are affected by the use of social network sites, and presents a case for theoretical and applied research on the health-related functions of expressive communication in virtual settings such as online social networks. Additionally, this chapter pays special attention to the function of social support. Issues, controversies, and problems that face researchers are offered for consideration, as are directions for future research.

DOI: 10.4018/978-1-6684-2414-8.ch018

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 Exploring Healthy Connection

The ultimate goal of this chapter is to build upon the existing body of work in the field by considering how communication that unfolds in social networks impacts human health and wellbeing.

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Background The structure and content of our social worlds support our health, wellbeing, and general quality of life. Researchers have developed a significant body of scholarship that focuses on identifying and supporting the cognitive and communicative processes that enhance our individual, relational, and socio-cultural welfare. Critical, humanistic, and social scientific researchers alike have pursued an understanding of human symbolic exchange, and growing numbers of researchers are uniquely interested in making contributions to a body of scholarship central to healthy lives, relationships, and communities. Underlying this chapter is an understanding that health and wellbeing are not simply characterized by the lack of mental or physical illness, but the presence of factors that sustain and enhance our psychological and physiological wellness. Affection, inclusion, and control, for example, are fundamental human needs that are often given and received through the social connections we make with others. What’s more, the fulfillment of these needs via interaction with people with whom we have formed relationships is a necessity for humans to function normally (Baumeister & Leary, 1995). The quality of our social ties, it is argued, contributes directly to the quality of physical and mental wellbeing. Research on the relationship between social connection and physiological health, for example, establishes a positive association between social support and cardiovascular, endocrine, neuroendocrine, and immune system functioning (Uchino, Cacioppo, & Kiercolt-Glaser, 1996). Stress exposure weakens immune system functioning and, thus, physical health; however, social support has been shown to buffer the damage inflicted by stress on biological functions (Uchino, 2004). Studies reveal that the break-up of a close relationship such as a marriage can elevate blood pressure and weaken the immune system, but these effects may be inhibited by the prevalence of other positive social connections (Russek & Schwartz, 1997; Albrecht & Goldsmith, 2003). It seems that direct positive social ties cushion people from the potentially negative impact of hardships on physical health (Ryff & Singer, 2008). In addition to the direct effects of social connections on physical health, research indicates that social ties may also have indirect effects on health and wellbeing by providing health protective social environments or pathways to health information and resources. For instance, social groups have the ability to provide people with attitudinal and behavioral support systems that inhibit members from engaging in harmful behaviors such as smoking or substance abuse while also encouraging members toward health protective behaviors such as physical activity, safe sex practices, and mammograms or cancer screenings (Albrecht & Goldsmith, 2003). Ultimately, the physiological impact of maintaining positive social ties is conclusive—people who establish and preserve close relationships have better physical health than those who do not maintain such quality ties. Beyond physical health and wellbeing, research also indicates that social connection can provide important mental health benefits. For example, people who are habitually socially isolated are likely to experience psychosocial distress whereas people with quality strong-tie networks, such as friends, family, significant others, are likely to reap psychosocial benefits (Hefner & Eisenberg, 2009). Fletcher and Fitness (1990) note that the presence of positive feelings about close relationships has been linked to psychological wellbeing, which lends credence to the notion that is the quality of social ties that supports mental health and not merely the existence of social interactions. People who are in stable committed intimate relationships, for instance, are happier than people who are not in such relationships (Diner, 318

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 Exploring Healthy Connection

Gohm, Suh, & Oishi, 2000). And on the flip side, research indicates that people with low quality social ties are more susceptible to alcoholism, eating disorders, schizophrenia, and depression, among other mental health disorders than people with strong social ties and support networks (Segrin, 1998). Notably, a lack of social support is found to have a stronger relationship with psychological distress than poverty (Caron, Latimer, & Tousignant, 2007). What’s more, social connection is important across a lifespan. Levula, Wilson, and Harre (2015) report social connections to be important determinants of mental health outcomes across three life stages—adolescence, adulthood, and seniors. It is important to recognize that physical health and mental health are not mutually exclusive. Physical health and illness can certainly have an impact on one’s state of mind, and mental health and illness can influence physiological functioning. In fact, some researchers and integrated medicine experts might argue that both forms of wellness are part of a larger system that ought not be treated independently. Despite potential differences in approach, researchers agree that the quality of our social connections contributes significantly and profoundly to our overall physiological and psychological heath and wellbeing.

COMMUNICATION, SOCIAL NETWORKS, AND WELLBEING The widespread use of online social networks is one of the fastest growing worldwide communication trends to emerge in the 21st century. Thus, virtual communities have a profound influence on the ways people seek, develop, maintain, and even dissolve relationships. Researchers and practitioners alike are interested in understanding the ways in physical and mental health and wellbeing are influenced by online social spaces. What is clear is that communication via computer-mediated channels (e.g., computers, tablets, smart phones) is a common and consistent practice in the lives of many Americans. Hence, this chapter explores several areas of contemporary scholarship on virtual communities, paying special attention to the role of communication in social networks and how it shapes human health and wellbeing.

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Social Support Social connection and communication are central to improving the wellbeing of people in need. Burleson and MacGeorge (2002) define supportive communication as “verbal and nonverbal behavior produced with the intention of providing assistance to others perceived as needing that aid” (p. 374). Research indicates that supportive communication promotes both physical and psychological health by providing health-relevant information, motivating healthy behavior, promoting self-esteem and self-care, and reducing emotional distress (MacGeorge, Feng, and Burleson, 2011), among other functions. Researchers most often conceptualize supportive communication as social support, which encompasses the general comfort, assistance, advice, or assurance that people experience (i.e., give and take) as a function of social relationships. Practically speaking, social support stands to provide protection for people who need to be encouraged, tangible assistance for people in times of need, and/or personal advice about life experiences when people need direction (Moore & Craig, 2009). Accordingly, social support enables people to cope with an amalgamation of individual, relational, or social stressors that ultimately have an impact on physical and mental wellbeing (Burleson & MacGeorge, 2002; High & Solomon, 2011). Social support is needed throughout multiple stages of life (Pecchioni, Wright, & Nussbaum, 2005), provides buffers from stressful life events (Cohen & Wills, 1985), and importantly, is enacted through communication with others (Goldsmith, 2004). Social support has been categorized in a variety of ways, 319

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yet a communicative perspective on social support tends to focus on the centrality of symbolic exchange of messages or meaning made between people. Communication scholars commonly recognize several types of social support including emotional support (e.g., expressions of empathy, care, and acceptance), informational support (e.g., sharing information, offering advice), instrumental support (e.g., assisting with tasks), esteem support (e.g., affirming identities, expressing value, enhancing self-worth), network support (e.g., providing new support contacts, expanding support resources), tangible support (e.g., practical material aid), and appraisal support (e.g., offering new perspectives or ideas), among others (Burleson & MacGeorge, 2002; Goldsmith & Albrecht, 2011; Xu & Burleson, 2001). Additionally, social support may vary in the degree to which messages are person-centered, which is the extent to which message content reflects an awareness of and adaptation to the affective, subjective, and relational elements of communication contexts (Burleson, 1982). According to High and Solomon (2011), high person-centered messages are “sophisticated utterances because they acknowledge several different factors, including the distressed person, the social situation, the process of communication, and people’s emotional and cognitive states” (p. 121). Whether providing people with emotional support in order to promote a positive affective experience or offering informational support to help people solve problems, scholars recognize that there are a variety of ways in which people communication social support and, to that end, that there are a variety of ways that social support benefits health and wellbeing.

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Social Support and Social Networks This chapter opened with an exploration of the physical and psychological benefits of social ties and turned to explain the various forms of communication that often underlie social support processes. In the section that follows, the discussion will extend to the role of virtual communities and, in particular, social network sites in providing avenues through which social support can be enacted and sustained. Scholars agree that traditional conceptions of social support often consist of family members, friends, and significant others, also known at strong tie networks (Albrecht & Goldsmith, 2003). However, weak tie networks are also able to provide social support that can be equally useful (Wright, 2002); weak ties simply refers to “a wide range of potential supporters who lie beyond the primary network of family and friends” (Adelman, Parks, & Albrecht, 1987, p. 126). Though it is most common for people to depend upon people with whom they are close to support them through difficult times, weak tie networks play an important role in helping people manage uncertainty and find much-needed support. In fact, it has been argued that weak tie support is sometimes perceived as more useful than strong tie support because it offers multifaceted information and diverse points of view, involves less social risk when disclosing information, offers more objective feedback, and necessitates less role obligations than does interaction with strong tie networks (Wright & Miller, 2010). What’s more, weak tie networks can be particularly beneficial for people who are coping with similar life stressors or health issues that carry a burden of social stigma. Wright and Bell (2003) argue that in certain situations weak ties may provide more effective social support than close family and friends due to the fact that weak tie support can often be shared without the risks of damaging close personal relationships. One of the most prolific forms of weak tie support can be found in virtual communities. Researchers acknowledge that a variety of relationship types can and do form online (Bugeja, 2005; McKenna, 2008; Schneiderman, 2003). And researchers note that, “computer-mediated communication coexists with face-to-face interaction as the prominent modes of for giving and receiving social support” (High & Solomon, 2011, p. 132). Virtual communities increasingly act as developmental conduits through 320

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 Exploring Healthy Connection

which individuals can seek, discover, and form social ties with others (Moore & Craig, 2009). Social network environments, in particular, provide communication contexts that influence the provision of weak tie social support. For example, virtual communities connect users with otherwise physically and socially “distant” other with whom they can openly engage in dialogue about similar topics of interest, provide and request information about risk-laden issues, and generally provide support in times of need. As researchers note, similarity, risk, and availability are three significant reasons that people turn to social networks to seek and give social support (High & Solomon, 2011; Moore & Craig, 2009; Wright & Muhtaseb, 201l). Ridings and Gefen (2004) argue that virtual communities are ideal contexts to engage in mediated communication given the multifaceted and varied platforms that exists where people can socially connect with relative strangers. In fact, researchers posit that one major benefit of social networks is the ability to connect based on shared similarity. Similarity might be based on personal or identity characteristics such as single parenthood, sexual identity, or race, but similarity may also be found in the specific content or topic of the virtual community such as grief and loss, post-traumatic stress disorder, or breast cancer. It is also possible that support found in virtual communities such as social networks is intersectional in nature, thereby crossing issues of identity and purpose. Wright (2002) argues that similarity to others online or similar experiences are two of the major advantages of utilizing online support. The ability to establish social ties and hear from people going through similar challenges helps people normalize their own experiences and receive much needed validation for what they are feeling. Yamasaki (2016) notes that sharing social support based on similarities helps people gain a sense of belonging, realize that they are not alone, and feel better about themselves as a byproduct of reciprocating support for other members of the network community. In addition to shared similarities, social networks can be particularly beneficial for people who are managing risk, particularly risks associated with stigmatized physical or psychological health conditions. Wright and Bell (2003) state, “Stigma refers to the sense of shame, disgrace or taboo associated with a particular illness/condition, usually stemming from fears and prejudices surrounding cultural conceptions of a health issue” (p. 42). Research indicates that weak tie social networks are particularly popular for people contending with stigmatized conditions such as eating disorders, sexually transmitted diseases, substance abuse, or mental health issues. People often feel less inhibited when communicating about sensitive issues in virtual environments, particularly confidential or anonymous environments, thereby avoiding the guilt or shame that often accompanies a particular situation or condition (Wright & Muhtaseb, 2011). This research supports the aforementioned idea that virtual communities provide users with important social networks among whom they may openly seek and express views (e.g., appraisal support), request information (e.g., informational support), suggest solutions (e.g., instrumental support), and communicate about feelings (e.g., emotional support) with minimal risk (Herring, 1996). Beyond similarity and risk, simple availability is also a commonly cited benefit of online social networks that is linked to health and wellbeing. Simply stated, people like knowing that someone will “be there for them” in times of need. While family members, friends, and significant others may be physically proximate, they are not always physically or emotionally available for people where and when people are in need of support. While it is true that most people experience some degree of social support from these strong tie relationships, research is also clear that weak tie relationships play a valuable role in enacting social support (Goldsmith & Albrecht, 2011; MacGeorge et al., 2011). A study conducted by Dunham, Hurshman, Litwin, Gusella, Ellsworth, and Dodd (1998) offers a glimpse in to the importance of social availability in virtual communities. Researchers provided new single mothers unlimited access for six months to an online social support community. Many of these single mothers reported being isolated from their normal social network of friends due to the re321

Research Anthology on Improving Health Literacy Through Patient Communication and Mass Media, edited by Association, Information Resources Management, IGI Global, 2021. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/nyulibrary-ebooks/detail.action?docID=6686709. Created from nyulibrary-ebooks on 2021-09-02 06:30:41.

 Exploring Healthy Connection

sponsibilities of a new baby. Significantly, this study found that the lonelier the mother, the more likely she was to seek support from the online social network. And, over time, the more frequently mothers engaged with others in the social network the more likely their sense of belonging to the group increased and the less likely they were to experience parental stress. Social network communities not only provide people with the ability to establish simple connections with others, but afford access to others during times of loneliness, enhance feelings of connectedness, reduce stress, and potentially regain or enhance one’s overall sense of wellbeing. Researchers agree that there are a plethora of benefits associated with establishing social connections via online social networks (High & Solomon, 2011; Moore & Craig, 2009; Wright & Muhtaseb, 2011; Yamasaki, 2016). A few of those benefits have been articulated herein, but the benefits discussed are not exhaustive and are arguably not mutually exclusive in function. Also, as will be noted later in this chapter, the benefits of virtual connections are not without limitations. Nonetheless, there is ample evidence that online social networks can be significant in helping people manage uncertainty, establish and maintain social connections, and deal with difficult emotions during stressful times.

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Expressive Communication, Social Networks, and Wellbeing People who cope well with life’s stressors tend to be people who enlist social support (Veroff, Kulka, & Douvan, 1981), and effectively coping with stressors is critical in maintaining health and wellbeing (Albada & Moore, 2012; Levula et al., 2016; Ryff & Singer, 2008). This chapter opened with an exploration of the physical and mental health benefits of social ties and turned to examine the various forms of social support as well as how that support is enacted in virtual communities such as online social networks. While the case has been established that receiving social support (e.g., emotional support, esteem support) is important to health and wellbeing, less has been stated about the function of affective expression in support processes. In the following section, research on expressive (i.e., emotional, affective) communication is presented. Specifically, this section of the chapter presents research on the efficacy of the expressive writing paradigm in managing physical and mental health and explore how expressive writing studies might inform novel research and practice on social support in social networks. Expressive (i.e., emotional) writing is a useful tool for physical and psychological health recovery and management. Pennebaker (1999) argues that the act of constructing narratives via expressive writing is a natural human process that allows people to understand their experiences as well as themselves. Putting thoughts into story-like form, he argues, seems to assist people with maintaining a sense of predictability and control over their lives (Pennebaker, 1999; Pennebaker & Seagal, 1999). When people are able to put their emotional experiences into narrative form, particularly during times of uncertainty or affective tumult, physical and mental health typically improves (Albada & Moore, 2012). For example, expressive writing studies report positive health outcomes for several physiological functions including blood pressure, liver enzymes, lung function, and the immune system (Baikie & Wilhelm, 2005; Slatcher & Pennebaker, 2007). Expressive writing has also been tied to improvements in mental health, such as improvements in mood and overall psychological wellbeing (Park & Blumberg, 2002; Pennebaker, Kiecolt-Glaser, & Glaser, 1988). Research in the realm of expressive writing is robust and researchers suggest that is it an effective conduit for maintaining mental and physical health. Researchers have also extended expressive writing studies to strong tie relationships such as romantic partners. Studies show that emotional communication supported by expressive writing helps partners develop empathic understanding and communicate difficult feelings (Snyder, Gordon, & Baucom, 2006). 322

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The act of writing about one’s emotional experiences seems to help people identify, understand, organize, and effectively communicate emotions to others. Partners who experience stressful events such as infidelity, for example, report that expressive writing helps ameliorate anger, depression, and martial distress by providing a platform to process and document their cognitive, affective, and/or behavioral experiences and subsequently communicate those experiences more effectively to their significant other (Snyder et al., 2006). Thus, there is good evidence that expressive writing stands to contribute to positive relational effects in a manner that is not altogether different from the effects observed for physical or psychological health. Notably, researchers and practitioners alike have well-documented the interdependence of physical, mental, and relational health. For example, relational upheavals can lead to maladaptive health behaviors such as smoking, excessive drinking, poor eating habits, and disrupted sleep patterns. Such maladaptive behaviors then disrupt immune function, raise cortisol levels, and result in cardiovascular changes, among other biological markers of stress. In short, relational health stands to impact physical health. Likewise, mental health disorders such as depression, bi-polar disorder, and schizophrenia can lead to strain in close relationships as a result of dealing with the emotional and behavioral strains commonly associated with such conditions. And, the negative impact that breast cancer, prostate cancer, muscular dystrophy, HIV, and a host of other physical ailments can have on individuals, couples, and families is well-established. That is, both mental and physical health challenges commonly impact relationships. Accordingly, it is important for researchers to recognize the mutual and potentially synergistic effects that expressive writing and/or expressive communication might have on physiological, psychological, and relational health (Pennebaker & Chung, 2010). Expressive writing shares some significant functions and characteristics with social support. Both have the potential to prompt situational appraisals, reduce stress, improve social relationships, and alter attitudes, beliefs, or behaviors that impact health outcomes. Also, emotional support has been characterized as communication of empathy, care, or affective support, whilst expressive writing has been associated with understanding and care for self and for others. Despite these commonalities, opportunities to examine symbolic exchange across contextual bounds remain. For instance, does intrapersonal emotional expression (e.g., expressive writing) and interpersonal emotional expression (e.g., expressive written communication in a social network) differ in health outcomes? Does quality or quantity of expressive writing/communication impact the effects? Room remains to explore how expressive writing functions outside the methodological parameters often prescribed in lab studies. Traditional experimental expressive writing studies ask participants to write uninterrupted for 15 minutes with pencil and paper about their deepest emotions tied to a particular issue, experience, or trauma, and most often the writing is private or reviewed only by a researcher or clinician. This process is then often repeated at prescribed intervals-- usually three to four days over the course of a week or once a week for four to six weeks (Pennebaker, 1999; Pennebaker & Seagal, 1999). While results from expressive writing studies have been robust overall, there are a dearth of studies examining the impact of expressive writing in spaces where privacy is variable, such as virtual communities. While the expressive writing paradigm has proven successful in studies that maintain the confidentiality of participants’ writing, a similar sort of confidentiality can be argued for certain virtual environments. In fact, selective exposure is one of the features that people generally find most attractive about mediated spaces—some social networks are open only to members and often times social networks allow users to make active choices about levels of privacy. Thus, it may be that expressive communication and exchange in online social networks serve a similar function as expressive writing completed in a lab. Given the temporal and economic limitations that may prevent many people from participating in clinician-supervised writing, understanding 323

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the potential similarities and differences between forms of affective expression should be of interest to researchers, clinicians, and lay persons alike.

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CONSIDERATIONS AND FUTURE DIRECTIONS As stated near the beginning of this chapter, virtual communities have a profound influence on the ways people seek, maintain, and dissolve relationships. Advances have been made toward understanding the communicative processes that unfold in these environments, but this progress has not been made without challenges. While a growing body of research exists analyzing the impact of social support, social networks, and human health and wellbeing, technical advances and user adoption rates have outpaced the work of scholars. Thus, this leaves much of the virtual world understudied with researchers responsible for generating theoretical explanations and practical solutions for constantly changing social practices. Researchers are truly only beginning to forward models that take into account the multifaceted and dynamic nature of human communication processes across developing social environments. This chapter now turns to offer considerations for the existing body of work as well as potential areas for future research. This chapter began by communicating the importance of social bonds on human health and wellbeing. Information was presented on the importance of social connection in relation to both physical and mental health. Moreover, this chapter reemphasized that physical health and illness can have an impact on one’s state of mind and mental health and illness can influence physiological functioning. Additionally, research on the importance of social support was presented that expressed the significance of communication in establishing and maintaining a sense of social wellbeing. Though research was offered that addressed some common ways that social support is enacted (e.g., informational support, emotional support, instrumental support), that body of research is sometimes lacking in explanatory power. This may be one area of research for scholars to pursue. Also, given the capacity for social support messages to be sent and received, it could be useful for scholars to understand the directional nuance of supportive messages. What one sends isn’t always what one wants to receive, and yet people arguably show others how they want to be treated via their own behavior. Additionally, one might question whether social support in traditional face-to-face environments operates similarly across mediated environments such as social networks. High and Solomon (2011) note McLuhan’s (1964) claim that “the medium is the message” and argue that variations in features and functions of computer mediated environments influence the social support processes that unfold within them. The authors go on to provide some evidence that the characteristics of support messages themselves may determine the types of virtual spaces in which they are likely to occur, but more research is needed in this area to fully understand what High and Solomon (2011) characterized as the “interplay” between the medium and the message when it comes to social support in mediated environments. Given the ubiquity and growth of online social networks, this is one area of research that stands to inform both research and practice. Also, scholars must consider the implications of people utilizing virtual communities or social network sites as primary sources of social support. Social isolation and loneliness are increasing in their pervasiveness, and it behooves researchers to understand the social consequences that lay therein. Lastly, this chapter explored research on expressive writing and documented its utility for physical and psychological health management. The interdependence of physical, mental, and relational health was noted, as were the potentially synergistic effects that expressive writing could have on physical, mental, and relational health and wellbeing. However, a gap was noted between expressive writing and 324

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 Exploring Healthy Connection

social support paradigms. It is clear that virtual communities provide ripe environments for expressive writing (e.g., emotional communication) to naturally unfold, but more research is needed to understand the impact these practices might have on human health and wellbeing. Scholars are urged to purse these questions, among others, as they continue to explore research on human social ties and the impact they have on physical and mental health.

CONCLUSION Virtual communities play an increasingly significant role in the processes through which people establish and maintain human connections. From impersonal relationships to close relationships and weak tie networks to strong tie networks, social networks are important to building social capital, exchanging social support, and maintaining health and wellbeing. Importantly, communication is central to this process and, as some have argued, social support may only be enacted through communication (Burleson & MacGeorge, 2002; MacGeorge et al., 2011). This chapter presents research on the salience of communication and social bonds on human health and wellbeing and explores the intersections of social support, expressive communication, and social networks. Additionally, consideration was offered to some of the challenges that face researchers interested in virtual communities, communication, and health, and some opportunities were provided for consideration for researchers and practitioners alike. It has been suggested that one of the more remarkable developments in modern society is the diffusion of new communication technologies from the organization into the sphere of social and personal relationships (O’Sullivan, 2000). This chapter reflects said development, and hopes to shed light on the communicative processes that enhance healthy connections in virtual communities and beyond.

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Albada, K., & Moore, J. L. (2013). Moving from positive thinking to positive talk: Implications for relational wellbeing. In M. J. Pitts & T. J. Socha (Eds.), Positive communication in health and wellness (pp. 117–132). New York: Peter Lang Publishers. Albrecht, T. L., & Goldsmith, D. J. (2003). Social support, social networks, and health. In T. L. Thompson, A. M. Dorsey, K. I. Miller, & R. Parrott (Eds.), Handbook of health communication (pp. 263–284). Mahwah, NJ: Lawrence Erlbaum Associates. Baikie, K., & Wilhelm, K. (2005). Emotional and physical health benefits of expressive writing. Advances in Psychiatric Treatment, 11(5), 338–346. doi:10.1192/apt.11.5.338 Baumeister, R., & Leary, M. (1995). The need to belong: Desire for interpersonal attachments as a fundamental human motivation. Psychological Bulletin, 117(3), 497–529. doi:10.1037/0033-2909.117.3.497 PMID:7777651

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Bugeja, M. (2005). Interpersonal divide: The search for community in a technological age. New York: Oxford University Press. Burleson, B. R., & MacGeorge, R. L. (2002). Supportive communication. In M. L. Knapp & J. A. Daly (Eds.), Handbook of interpersonal communication (pp. 374–424). Thousand Oaks, CA: SAGE. Caron, J., Latimer, E., & Tousignant, M. (2007). Predictors of psychological distress in low-income populations of Montreal. Canadian Journal of Public Health, 98(Suppl. 1), S35–S44. PMID:18047159 Cohen, S., & Wills, T. A. (1985). Stress, social support, and the buffering hypothesis. Psychological Bulletin, 98(2), 310–357. doi:10.1037/0033-2909.98.2.310 PMID:3901065 Diener, E., Gohm, C. L., Suh, E., & Oishi, S. (2000). Similarities of the relations between marital status and subjective well-being across cultures. Journal of Cross-Cultural Psychology, 31(4), 419–436. doi:10.1177/0022022100031004001 Dunham, P. J., Hurshman, A., Litwin, E., Gusella, J., Ellsworth, C., & Dodd, P. W. D. (1998). Computermediated social support: Single young mothers as a model system. American Journal of Community Psychology, 26(2), 281–306. doi:10.1023/A:1022132720104 PMID:9693693 Fletcher, G. J. O., & Fitness, J. (1990). Occurrent social cognition in close relationship interaction: The role of proximal and distal variables. Journal of Personality and Social Psychology, 59(3), 464–474. doi:10.1037/0022-3514.59.3.464 Goldsmith, D. J. (2004). Communicating social support. New York, NY: Cambridge University Press. doi:10.1017/CBO9780511606984 Goldsmith, D. J., & Albrecht, T. L. (2003). Social support, social networks, and health: A guiding framework. In T. L. Thompson, R. Parrot, & J. F. Nusbaum (Eds.), Handbook of health communication (pp. 335–348). Mahwah, NJ: Routledge. Hefner, J., & Eisenberg, D. (2009). Social support and mental health among college students. The American Journal of Orthopsychiatry, 79(4), 491–499. doi:10.1037/a0016918 PMID:20099940 Herring, S. C. (Ed.). (1996). Computer-mediated communication: Linguistic, social and cross-cultural perspectives. Philadelphia, PA: John Benjamins. doi:10.1075/pbns.39

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High, A. C., & Solomon, D. H. (2011). Locating computer-mediated social support within online communication environments. In K. B. Wright & L. M. Webb (Eds.), Computer-mediated communication in personal relationships. New York: Peter Lang. Levula, A., Wilson, A., & Harre, M. (2016). The association between social network factors and mental health at different life stages. Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation, 25(7), 1725–1733. doi:10.100711136-015-1200-7 PMID:26669317 MacGeorge, E. L., Feng, B., & Burleson, B. (2011). Supportive communication. In M. L. Knapp & J. A. Daly (Eds.), Handbook of interpersonal communication (4th ed.; pp. 317–354). Thousand Oaks, CA: Sage.

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Slatcher, R. B., & Pennebaker, J. W. (2007). Emotional expression and health. In S. Ayers, A. Baum, C. McManus, S. Newman, K. Wallston, J. Weinman, & R. West (Eds.), Cambridge Handbook of Psychology, Health & Medicine (2nd ed.; pp. 84–86). Cambridge, UK: Cambridge University Press. doi:10.1017/ CBO9780511543579.019 Snyder, D. K., Gordon, K., & Baucom, D. H. (2004). Treating affair couples. Extending the written disclosure paradigm to relationship trauma. Clinical Psychology: Science and Practice, 11(2), 155–159. doi:10.1093/clipsy.bph066 Uchino, B. N. (2004). Social support and physical health: Understanding the health consequences of relationships. New Haven, CT: Yale University Press. doi:10.12987/yale/9780300102185.001.0001 Uchino, B. N., Cacioppo, J. T., & Kiercolt-Glaser, J. K. (1996). The relationship between social support and physiological processes: A review with emphasis on underlying mechanisms and implications for health. Psychological Bulletin, 119(3), 488–531. doi:10.1037/0033-2909.119.3.488 PMID:8668748 Veroff, J., Kulka, R. A., & Douvan, E. (1981). Mental health in America: Patterns of help-seeking from 1957-1976. New York: Basic Books. Wood, J. T. (2000). Relational communication: Continuity and change in personal relationships. Belmont, CA: Wadsworth. Wright, K. B. (2002). Social support within an on-line cancer community: An assessment of emotional support, perceptions of advantages and disadvantages, and motives for using the community from a communication perspective. Journal of Applied Communication Research, 30(3), 195–209. doi:10.1080/00909880216586 Wright, K. B. (2004). On-line relational maintenance strategies and perceptions of partners within exclusively internet-based and primarily internet-based relationships. Communication Studies, 55(2), 239–253. doi:10.1080/10510970409388617 Wright, K. B., Bell, S. B., Wright, K. B., & Bell, S. B. (2003). Health-related support groups on the Internet: Linking empirical findings to social support and computer-mediated communication theory. Journal of Health Psychology, 8(1), 39–54. doi:10.1177/1359105303008001429 PMID:22113899

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Wright, K. B., & Miller, C. H. (2010). A measure of weak-tie / strong-tie support network preference. Communication Monographs, 77(4), 502–520. doi:10.1080/03637751.2010.502538 Wright, K. B., & Muhtaseb, A. (2011). Personal relationships and computer mediated support groups. In K. B. Wright & L. M. Webb (Eds.), Computer-mediated communication in personal relationships. New York: Peter Lang. Xu, Y., & Burleson, B. R. (2001). Effects of sex, culture, and support type on perceptions of spousal social support: An assessment of the support gap hypothesis in early marriage. Human Communication Research, 24(4), 535–566. doi:10.1111/j.1468-2958.2001.tb00792.x Yamasaki, J. (2016). Communicating health and connection in supportive communities. In J. Yamasaki, P. Geist-Martin, & B. F. Sharf (Eds.), Storied health and illness: Communicating personal, cultural, and political complexities. Long Grove, IL: Waveland Press.

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 Exploring Healthy Connection

KEY TERMS AND DEFINITIONS Community Connectedness: A strong sense of identification with or feeling of belonging to a community. Interpersonal Communication: Communication that occurs between two people within the context of their relationship and that, as it evolves, helps them to negotiate and define their relationship. Message: Verbal and nonverbal elements of communication to which people give meaning. Social Capital: Features of social life such as networks, norms, and trust, that facilitate cooperation and coordination for mutual benefit. Social Network: A belief that one’s own culture is superior to other cultures. Social Support: Verbal or nonverbal assistance, comfort, or advise we seek or give to others. Strong Tie Networks: Social networks made up of people with whom we have close relationships such as friends, family members, and significant others. Weak Tie Networks: Social networks made up of people other than those with whom we have close relationships.

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This research was previously published in Novel Applications of Virtual Communities in Healthcare Settings; pages 171-187, copyright year 2018 by Medical Information Science Reference (an imprint of IGI Global).

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Chapter 19

Role of Social Media Promotion of Prescription Drugs on Patient Belief-system and Behaviour Samrat Kumar Mukherjee https://orcid.org/0000-0002-8839-0140 Sikkim Manipal Institute of Technology, Sikkim Manipal University, Gangtok, India Jitendra Kumar https://orcid.org/0000-0003-0167-0738 Sikkim Manipal University, Gangtok, India Ajeya K Jha https://orcid.org/0000-0003-0491-5008 Sikkim Manipal University, Gangtok, India Jaya Rani Rani Sikkim Manipal Institute of Technology, Sikkim Manipal University, Gangtok, India

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ABSTRACT In the current scenario, extremely little information exists on the uses, benefits, and limitations of social media for health communication among the patients and health professionals. Further, how it is affecting the patient belief system and behavior is even less studied, but it is emerging on the research horizon due to its growing significance in this digital age. This is a review article using a systematic approach. We performed a systematic literature search for papers that address social media–related challenges and opportunities for pharmaceutical drugs. It identifies the needs that propel patients to take recourse to SMPs; the benefits they derive from these and their limitations. This review article confirms that healthcare information provided by the social media sites has been found to be beneficial in many ways for the stakeholders and that it complements existing patient-physician interaction. However, it has limitations that need to be explored and understood to avoid ill consequences.

DOI: 10.4018/978-1-6684-2414-8.ch019

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 Role of Social Media Promotion of Prescription Drugs on Patient Belief-system and Behaviour

INTRODUCTION Direct-to-consumer Promotion The profile of the patient has undergone a massive change in recent years. They are confident, committed, curious, and do not hesitate to ask questions about their health status. To empower the patients, Direct-to-consumer promotion (DTCP) has played a substantial role. DTCP refers to the promotion of pharmaceutical products directly to the patient (Gu et al., 2011). According to a study, 59% of patients prefer to search for information at Social Media or Web as their primary source (Page, 2018). Study shows that some of the social media platforms are used more often than others. According to the study the level of digital engagement assessed was not at all associated with the firm size. Most of the firms direct their communication towards the general public (Costa et al., 2018). A number of patients who are looking for information, and reading others experience about their own or that of their loved one’s health issues through social media is rapidly growing. Pfizer has the most active social media pages on Facebook, and Twitter (Liang and Mackey, 2011). Social media sites like blogs of GlaxoSmithKline’s and Facebook page of AstraZeneca’s indicates for they are “intended for US residents/customers only,” but there are no restrictions to non-US users. Novartis has built a social media platform called CML Earth (Chronic Myelogenous Leukemia) for patients suffering from leukemia (around the world). This site allows a patient to connect with other patients, doctors, and online communities. Now, Indian patients are also using social media for acquiring information on medicines including prescription drugs. The e-patient concept is forcing doctors and pharma industry to modify their strategy about how to build a relationship with patients. With the help of these, apart from seeking and sharing information, patients also verify the cost of the medication (Mukherjee & Jha, 2017).

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METHODOLOGY FOR THE STUDY In order to offer an impression of the impacts of social media promotion of pharmaceutical drugs on patients and on their relationships with physicians, systematic literature review have been conducted. To conduct the systematic literature review, the below-mentioned guidelines were followed as prescribed by the Preferred Reporting Items for Systematic Literature Reviews (PRISMA) (Moher et al., 2009). The process, thus, followed was (a) to identify potentially relevant research articles, (b) Screening of these articles on the basis of key-words, (c) eliminating the non-relevant research papers (d) inclusion of 13 relevant papers on Direct-to-consumer (DTC) promotion and (e) arriving at 136 relevant research articles. To identify the relevant articles a search was made on the basis of four key terms. These are: a) “Social media” or blog or Facebook or Twitter b) “Prescription drugs” c) “Patient” d) “physician” or “doctor”. The process of article search was started from February 7, 2017, using the following 08 e-databases: Google Scholar, Communication Abstracts, PLOS one, NEJM catalyst, Pharma Phorum, Research Gate, Elsevier, and PubMed Central and this process lasted till 30th April 2019.

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 Role of Social Media Promotion of Prescription Drugs on Patient Belief-system and Behaviour

In order to focus on the relevant themes, the process was to use “Find” tab to search terms like “ advantage or benefit”,” disadvantage or drawback” and “reasons for using social media.” This helped in identification of areas of interest and thereafter incorporating the same in the study. Figure 1. PRISMA flow diagram illustrating the procedure of article selection

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Selection Criteria for Relevant Research Articles To select an article to include in the study it should be able to fulfill below mentioned selection criteria: (1) Authored in English, (2) availability of full text, (3) contain primary empirical data, (4) the patients are also the users of social media, (5) the influence on patients (users of social media) are clearly mentioned. Figure 1 shows the procedure of article selection via a flow diagram.

Search Outcome A total of 137 studies are critically scrutinized by study design, social media platform, and purpose of the study, users, results, conclusion, and use of social media in promotion of pharma product. Various studies included the use of social media platform, the most reportedly used being Facebook, Twitter. The study samples included blogs/forum discussions in which the participants were the patients (patient’s

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 Role of Social Media Promotion of Prescription Drugs on Patient Belief-system and Behaviour

party), and/or health professionals. Though these papers focus on a varied range of disease states, but the most frequently reported were on diabetes (Young & Rice, 2011; Lariscy, Reber & Paek, 2011), flu/H1N1 (Corley, et al., 2010), stress or depression (Takahashi et al., 2009), and sexual health (Selkie, 2011; Liang, & Scammon, 2011).

PURPOSE OF THE STUDY The purpose of the research is to understand which segment of people are using social media for healthcare information and also to find advantages they achieve through it. The paper also attempts to underline limitations and ethical issues being encountered in this respect.

Research Questions The research questions on which the review paper has been based are: • • • • •

Who are the people using social media to get the medication information? Why are those people using social media as their source of information? What are the benefits social media is reported to have over other promotional tools? What are the limitations of social media promotion of medication being reported? What are the ethical issues emerging in this respect?

Discussion

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Social Media Users Profile to Search for Health Communication The social media users’ profile who are using it for health communication in selected studies varied widely, covering various population groups (Table 1). The social media user’s age is 11-34 years (Selkie et al., 2011 and Marcus et al., 2012). But some earlier studies show a clear digital divide in access to health information with marginal groups holding a disadvantaged position (Jha & Pandey, 2017). According to some researches, there were less male users than female users of social network sites (Jha et al., 2018). Few researchers claimed that social media users were excessively from lower-income households (Scanfeld et al., 2010) which conclude that patients (patients’ party) are accessing social media independent of education. These studies indicate unpredicted trends. Traditionally vulnerable groups such as women, the poor, ethnic minorities and less educated visit SMPs more than the traditional invulnerable groups. If the inequalities of access to the internet are suppressed the weaker groups are more prone to accessing SMPs, perhaps because it provides an economic mode to understand the health issues. What makes SMPs a preferred medium for vulnerable groups needs further investigation? This knowledge provides a reason to encourage social media to promote health interventions and communications. As SMPs are being visited by persistently increased number of visitors, including the vulnerable ones, it necessitates a matching response from public health experts and physicians by creating policies that address the persisting digital divide; leveraging SMPs to promote health and disease prevention/early

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 Role of Social Media Promotion of Prescription Drugs on Patient Belief-system and Behaviour

curative intervention strategies; cautiously weed out the negative possibilities and enhance qualitative and quantitative health outcomes. Table 1. User profile: General vs healthcare Total general social media user in America

Total health-related social media user in America

72%

42%

% of U.S. adults who use at least one social media site, by age 18-24

84.80

76.40

25-34

77.00

57.30

35-44

78.30

35.50

45-54

71.10

22.40

55-64

67.00

13.10

65+

33.60

8.00

% of Dutch adults who use at least one social media site, by gender Male

44.60

15.00

Female

55.40

85.00

(Chou et al., 2009; Van de Belt et al., 2013)

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A Different Reason for Patients to Use Social Media Our study is also to find out the reasons or factors that are motivating the patients (or their family) to use social media for health communication. During the systematic review from most of the articles, it emerged that patients do not always use social media to avoid the physicians, but rather use it as a counterpart of physician’s treatment to address those needs that cannot be fulfilled by physicians. According to the patients, the relationship amongst patients and physicians is becoming more formal, where physicians provide practiced knowledge reagarding the patient circumstance and recommend suitable treatment based on their medical knowledge (Colineau & Paris, 2010). Also, physicians often find it difficult to show empathy towards their patient and often they screen facts for the patient. The patient should be well-versed about all the relevant details including various possibilities. Patients as well may have confidence in that their physicians might not be conscious of the cutting-edge treatments (Colineau & Paris, 2010). Moreover, one of the very important points for patients to seek information from social media is to address their discontent with their physician’s failure to fulfill the patients’ emotional and informational needs (Gu et al., 2011). One more purpose for patients to use social media was to find a way to implement traditional health information about their condition in their everyday life (Gómez-Zúñiga et al., 2012). Facebook and Twitter, especially, are seen as a significant existence to traditional in-office counseling tool for refining patients understanding (Kofinas et al., 2014). The reasons why patients (patients’ family and friends) use social media are primarily to meet one or more unfulfilled needs. These reasons have been explained below along with the respective articles.

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 Role of Social Media Promotion of Prescription Drugs on Patient Belief-system and Behaviour

Social Support The most common reason to use social media by patients for health-related is social support. The definition of social support is “the process of interaction in relationships which is intended to improve coping, esteem, belonging, and competence through actual or perceived exchanges of psychosocial resources” (Cohen, et al., 2000). Social support can be over and done with five different classes and four of these classes were found to be mutual forms of social media use by patients for health-related drives (Schaefer, Coyne, & Lazarus, 1981). These four forms are, emotional support, esteem support, information support, and network support, explained below.

Emotional Support Emotional support can be explained as “communication that meets an individual’s emotional or affective needs” (Mattson & Hall, 2011). Emotional support aids the patient to address their emotional needs. Examples of emotional support are “sharing of emotional difficulties” (Menon et al., 2014), “motivational support that feels like a warm blanket wrapped around you” (Van Uden-Kraan et al., 2008), and “motivate other people who are coping with similar problems” (Bartlett & Coulson, 2011).

Esteem Support Esteem support can be explained as “communication that bolsters an individual’s self-esteem or beliefs in their ability to handle a problem or perform a needed task” (Mattson & Hall, 2011). This form of support boosts an individual to take the actions successfully, confidently and also to live happily with their condition. Instances of esteem support include “getting motivated from other patient’s motivation” (Chiu & Hsieh, 2013), “share experiences about a new treatment to find encouragement before starting it” (Coulson, 2013) and “rituals of confirming each other’s endeavors to follow health instructions” (Wentzer, & Bygholm, 2013).

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Information Support Information support is referred to as “communication that provides useful or needed information” (Mattson & Hall, 2011). In particular, new patients need a fair portion of facts about their circumstance and treatment possibilities, which can only be delivered by patients who have already suffered from with the illness for a longer period (Mattson, & Hall, 2011). Instances of information support are “receiving advice about treatments” (Setoyama, Yamazaki & Namayama, 2011), “help fellow sufferers by sharing experiences and relevant information about the disease” (Chiu & Hsieh, 2013), as well as “ask questions about the condition” (Coulson, 2013).

Network Support Definition of network support is “communication that affirms an individual’s belonging to a network or reminds him/her of support available from the network” (Mattson & Hall, 2011). It is that kind of backing that repeats people that no matter what state they are facing; they are not by themselves. Examples of network support are “meeting other patients who had gone through similar experiences” (Bers et al., 335

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 Role of Social Media Promotion of Prescription Drugs on Patient Belief-system and Behaviour

2010), “a means to connect and motivate others in similar situations” (Colineau & Paris, 2010), as well as “fostering relationships based on shared attributes” (Frost & Massagli, 2008). According to a report from the New England Journal of Medicine (NEJM), 2017 most of the council members accepted that social networks are suitable for health care distribution (Figure 2). Chronic disease management and elevation of healthy behaviors are among the top of other situations; like ‘art for Alzheimer’ (Volpp & Mohta, 2017). Figure 2. Use of social networks in health care distribution

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Social Comparison Patients use social media to relate themselves with other patients to find out which stage of the disease they are at the time of visiting SMPs. This social appraisal can create confusion with social support, for instance, when patients relate themselves with peers to be aware of that they are not the only person in this situation (network support) or when patients relate themselves with other patients to find out how other patients who are diagnosed with the same disease cope up with the circumstance. However, a social assessment was considered distinctly in different articles by the authors. Instances consist of “upward social comparison” (Coulson, 2013). According to a report by NEJM (2017), disease-specific patient support groups are the top among the most useful social network–based approaches (Figure 3). Social media can help patients by providing information (Rupert et al., 2014) and by supporting psychosocially (Ho et al., 2014). Social media, supports (Rupert et al., 2014), and it empowers the patients (Hawn, 2009). Health-related information searched by patients can direct to further equivalent communication amongst the patient and physician. This outcome refers to patients feeling more confident in their bond with the physician (Smailhodzic et al., 2016).

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 Role of Social Media Promotion of Prescription Drugs on Patient Belief-system and Behaviour

Figure 3. Potential social networks for health care delivery

The main benefit of social media use by patients is that it minimizes the lack of information between physician and patients and patients have a better interpretation of the physician during check-up (Lee & Wu, 2014). Patients can become empowered through social media by providing them proper information as well as chance for interaction, which enhances the patient’s participation in conversations (Smailhodzic et al., 2016). Ultimately, empowerment of patient increases their ability to interact with the physicians (Van Uden-Kraan et al., 2008). According to a study (Chatterjee, 2012), social media gives a great platform for the pharmaceutical industry to reach out every nook and corner of the world. Social media is one of the media for the pharmaceutical industry to share their information, values, and strategies with patients. According to research (Volpp & Mohta, 2017), social media has a major or moderate impact on health-care aim (Table 2). Maximum people think that social media has a major to moderate impact on patient engagement, while other people think social networks will have a significant impact on the quality of care and provider engagement. Table 2. Impact of social media on different aspects of health care Patient engagement

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Major impact

44%

Quality of care 29%

Provider engagement 18%

Cost of care 18%

Moderate impact

47%

49%

44%

36%

Slight impact

8%

20%

33%

37%

No impact

1%

2%

5%

9%

It may be summarized that the reason for the growing popularity of SMPs lies in their overall empowering outcomes for the healthcare information searchers. The reasons identified by the literature review indicate high emotional support, receiving recognition and understanding; the opportunity to share experiences, freedom to exchange views with various caregivers and fellow patients across the globe, the possibility to help other patients new to the disease or at the advanced stage and so on. It also

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 Role of Social Media Promotion of Prescription Drugs on Patient Belief-system and Behaviour

appears that it is not the factual information that makes SMPs important, rather, the way the information is provided makes SMPs more attractive. Information is shared in a much warmer and considerate manner than elsewhere. Empathy seems to be a driving factor. The suffering of an individual can best be understood by fellow sufferer alone. In the absence of SMPs patients face psychological isolation as they are unable to share their true suffering from anyone, including their near-ones. This adds to their already high-stress levels. SMPs address this stress effectively as at least here the actual suffering of individuals is understood, shared and at times, suggestions are also provided. It is not surprising that patients consider sharing of experiences as the most valuable aspect of SMPs. This empowerment, the studies indicate, enhances the confidence of a patient in their interaction with physicians, high aptitude to accept their disease; greater capacity to deal with social surroundings. These in turn positively affect their self-esteem, social well-being, and optimism.

BENEFITS OF SOCIAL NETWORK FOR HEALTH COMMUNICATION From the systematic review, few benefits of social networks for health communication were recognized for patients (Table 3). Social media provides different types of health facts to the public (Tian, 2010), patients (Liang & Scammon, 2011), and health professionals (Bosslet et al., 2011). This model of communication can provide a solution to different medical queries (Bosslet et al., 2011). Social media gives information in forms other than text mode and can give these information to the target audiences who have the needs; for instance, videos can be used when literacy level is low (Adams, 2010). Many social media platform gives the facility of dialogue between patients, and between a patient and a physician (Colineau & Paris, 2010; Shrank et al., 2011). Patients’ use YouTube to share medications information, different types of disease symptoms, and new diagnostic systems (Fernandez-Luque et al., 2009), and to share personal disease stories by the patients themselves (Chou et al., 2011). Blogs use a space where patients have right to use different resources (Adams, 2010) and deliver an opportunity for physicians to share information with patients (Colineau, & Paris, 2010). Patients and physicians use Facebook to share their understanding about the journey of disease controlling, and diagnosis (Farmer et al., 2009).

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Table 3. Utilizing social media for health communication among the patients

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 Role of Social Media Promotion of Prescription Drugs on Patient Belief-system and Behaviour

Another reason to practice social media, it can provide real-life interaction and at low cost (Corley et al., 2010; Signorini, Segre & Polgreen, 2011). It can help to monitor different post about health issues (Chew & Eysenbach, 2010), monitor and track disease (Signorini, Segre & Polgreen, 2011), point out false information about health (Scanfeld, Scanfeld & Larson, 2010), can identify the intervention target (Salathé & Khandelwal, 2011), and also spread important health-related information to targeted populations (Corley et al., 2010). Physicians and pharmaceutical companies can gather information about patient understandings from blogs and monitor public response to health issues (Adams, 2010). Social network provides ultra-fast sharing of information, including the risk involved (Ding & Zhang, 2010). As many mainstream media observe medical blogs frequently, some information can help to make any health-related policy (Kovic, Lulic & Brumini, 2008). Overall we find several benefits of SMPs. The speed of sharing near zero-cost communication over SMPs is incredible. A global audience ensures it remains active 24/7/365. SMPs cater to a wide range of audience including the physicians, patients, family members, support groups, marketers of product and services, academicians and researchers. This congregation of the audience is unique and opens up many opportunities. SMPs, in addition, are informal settings that make patients more comfortable and confident. Patients feel free to ask questions and even respond because of relative anonymity the platforms provide them. They discuss even embarrassing issues in detail within the cloak of invisibility. These groups provide promotional space and have efficient space for buyer and seller interactions. The marketers can identify the patient needs and then come up with a product/service to match these. Marketers and physicians can also gather important information on side-effects and adverse effects of their drugs or even about the misuse or abuse of their products. The regulators find SMPs invaluable as it facilitates them to formulate policies related to various health issues. It provides them with information on misleading and questionable practices existing.

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Limitations of Social Network for Health Communication There are some restrictions of social media promotion of prescription drugs (Table 4). The main restrictions of social network are quality (Adams, 2010) and the shortage of trustworthiness of the information regarding health and drugs (Adams, 2010; Tian, 2010; Kukreja et al., 2011). The authors of websites cannot be identified (Adams, 2010; and Tian, 2010). Thus it is difficult for patients to point out the trustworthiness of information found online (Adams, 2010). Protocols do not aid physicians to communicate with patients online, for instance, email is not an official medical record and can be exposed to security breaches (Timpka, 2008), It is absolutely inappropriate to prescribe medicines over the phone (or WhatsApp) (2018). Different policies are taken to address anxieties like providing training to properly use social media technologies and confirm the accuracy of available facts (Lariscy et al., 2010), or finding out more accessible credible sites (Hughes et al., 2009). It is a big challenge to validate a huge number of information about prescription drugs available on the social media platform and their accuracy (Adams, 2010). Many critics are worried about privacy and the probable troubles that may surface when personal data of patients remain accessible (Adams, 2010). Many patients who are using social media to gather information about prescription drugs are often unacquainted of the risks of disclosing personal information online (Adams, 2010) and getting harmful or incorrect advice from social media (Adams, 2010). Patients might get overloaded with all the information available about prescription drugs on social (Adams, 2010). The patients may not know which drug is correct for them and how to use it correctly from the information available on social media (Adams, 339

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 Role of Social Media Promotion of Prescription Drugs on Patient Belief-system and Behaviour

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Table 4. Restrictions of social media usage for health communication among the patients

2010). False information from social media can make adverse health consequences on patients, for example, pro-smoking imagery (Freeman & Chapman, 2007). Wrong information on Twitter recommended Nigerians to drink more salt water to combat Ebola. But because of it, 2 people died and more than 12 admitted to hospital (Carter, 2014). Some research has found negative health risk behaviors displayed on social media, such as unsafe sexual behavior (Moreno et al., 2009). There are limited and very few evidence available that searching information through social media will positively impact on patient’s health (Colineau & Paris, 2010). Due to regulations physicians do not use social media to communicate with their patients (Kim, 2009). It is also possible that due to social media promotion of prescription drugs patient refrains from visiting a physician (Kim, 2009). In a study, it shows that a patient and a physician operate as a team who work together to cure the patients, the differences held by them about the advantages and disadvantages of SNP may create problem in their relationship. (Pandey et al., 2015; Pandey et al., 2019; Jha et al., 2018). The patients use social network predominantly for social support, through information support, emotional support, esteem support, and network support. Different kinds of social network that are used by patients have found to be an emotional expression and social comparison platform. These varieties of social network were found to direct patient empowerment. It has been found that other effects of social media have decreased subjective well-being of patients, rather than increasing the addiction and also has made them a bull’s eye for promotion, and forfeiture of confidentiality. These varieties of social media are also affecting the physician-patient bond by encouraging more equal communication between the patient and physician, undersized and pleasant relationships. (Smailhodzic et al., 2016) A research (Liu & Combs, 2013) found that marketers of pharmaceutical drugs are annoyed by the less guidance about online promotion, they realized different issues involved by new media platforms, and are very watchful on their approach. Stakeholders do not want to take the risk when it matters about to promote in social media, observing them properly before launch and monitor them periodically. Due to the introduction of social media like Facebook, Twitter, etc. promotion of prescription drugs has changed drastically. It is to be noted that even minors (individuals below 18 years of age) are visiting SMPs without any supervision (Baptist et al., 2011). This is a dangerous trend. According to a study (Volpp & Mohta, 2017) time invested by physicians is the biggest challenge for healthcare delivery. A higher percentage of physician view time as the top challenge among other challenges (Figure 4).

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Figure 4. Challenges in scaling social network tools for health care delivery

From the discourse, we find that the immense benefits of SMPs must not blind us of their limitations and potential for misuse. The most important limitation is the quality of information. Is the information correct? Is it complete? Or are some unpleasant facts have been suppressed fully or partially? Is the information biased? Or is it misleading? Many time information may be persuasive in the guise of education. The question mark is always there if people on the platform are authentic. Many disease websites are sponsored and promoted by marketers. Are the options being discussed are scientifically valid? Or are these prescribed by fly-by-night operators? Is the researcher seeking information is a medical researcher as he claims or is he a market researcher? These possibilities define serious limitations of SMPs. Perhaps regulators should provide authentication to SMPs. Are patients capable of navigating through information provided in SMPs? Can they sift through the flood of information available online? Can they differentiate between trustable and non-trustable information? Do they use this information to consolidate their interaction with physicians or do they begin to disbelieve the physicians? Do such patients waste the precious time of physicians by being argumentative? Do they bye-pass physicians and indulge in self-medication after being “empowered” by these SMPs? Does the confidentiality of the patient become a victim of SMPs? Personal information at the hands of unethical people can create havoc. This is even more serious an issue because patients, believing themselves as anonymous, become over-revealing. Subjective well-being of an individual is an important factor in health-care. A feeling of pessimism has been found to be debilitating or even fatal. Do SMPs damage this subjective well-being by providing information that may be misconstrued by a pessimistic patient? Do SMPs result in over diagnosis or even diagnosis of non-existent diseases? Health care social media sites are vulnerable to unethical mindsets. Patients even if aware of the possibility still are at a risk because of their limited understanding of the issue. Physicians are in a far better position to appreciate the possibility as also they possess the ability to discriminate between the safe and not-so-safe SMPS. A study (Jha & Pandey, 2017) underlines this by bringing out the differing perceptions of patients and physicians in this respect. This difference in perception can negatively affect the patient-physician relationship. Physicians need to be aware of this difference, as well as the

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 Role of Social Media Promotion of Prescription Drugs on Patient Belief-system and Behaviour

vulnerability of patients. They have now the additional burden to discourage the patients from visiting predatory SMPs.

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CONCLUSION Healthcare remains a core concern for individuals, family, and society in general. Specialized capabilities make it imperative that information flow remains restricted legally for health issues. In all countries barring two (USA and New Zealand) health-related information by marketers of health care products is restricted to Physicians alone. Patients in the recent past had absolutely no access to it. Despite the good intentions of this policy, perhaps the informational needs of patients were completely ignored. It is this vital need that is the foundation of worldwide use of online healthcare information. This review paper deeply explores the use of social network for the promotion of healthcare products including the information completely by-passing the physicians. Our focus has been to identify the needs that have resulted in an explosion of the use of social network for healthcare products; benefits available to the stakeholders, including the patients, family members, regulators and marketers; and the limitations of this medium for sharing of information. We find that the number of patients is increasing who use social network to search for health-related information. The needs have been identified, and they range from the need to be empowered; need to have access to better communication and need for socio-emotional support. A need to make rational decisions is also a part of it. It brings in a large basket of benefits ranging from feeling empowerment, ability to deal with physician and society in general, empathy unlimited information and ability to accept the disease positively and so on. Unfortunately, it has negative aspects too, which cannot be ignored. Limitations include the authenticity, integrity of information, integrity of people on the social media platform, over-diagnosis of diseases and even self-medication propensity. Other adverse effects of social network use by patients we recognized were diminished subjective wellbeing, obsession to social network, being directed for promotion, and forfeiture of confidentiality. It may, therefore, be said that SMPs are a reality which cannot be denied or done away with. Also, it fulfills the enormous need of patients and their family members; it leads to many benefits to the healthcare system as a whole, but suffers from severe limitations, most importantly, the possibility of its misuse and abuse. It has several implications for patients, physicians, marketers, and regulators. Patients must learn to appreciate the distinction between ethical and not ethical SMPs; they must not disregard the physician and who must continue to be the ultimate guardian of the healthcare environment. Physicians must learn ways to encourage positive outcomes of SMPs and discourage its negative outcomes and remain alive to the possibility of patients depending too much on the same. Marketers must not only remain ethical but should also help in identifying unethical ones and ensure these are kept out of the loop. Regulators have the toughest task. They cannot wish away SMPs and must constantly find ways to regulate them with appropriate and timely policy formulations and their implementation in letter and spirit. This study also throws up new researchable possibilities. Are there other benefits of SMPs? Are patients aware that so far SMPs are illegal? Is it leading to information clutter? What could be ways to sift through a maze of information and find the authentic one? Are these sites being used to persuade particular option to patients? Are these SMPs educational or are they promotional? Is it possible to distinguish objectively the educational and promotional SMPs?

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 Role of Social Media Promotion of Prescription Drugs on Patient Belief-system and Behaviour

Through this work, it is hoped that a need for meta-study on SMPs, their needs, benefits, and limitations is fulfilled.

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Schaefer, C., Coyne, J. C., & Lazarus, R. S. (1981). The health-related functions of social support. Journal of Behavioral Medicine, 4(4), 381–406. doi:10.1007/BF00846149 PMID:7338894 Selkie, E. M., Benson, M., & Moreno, M. (2011). Adolescents’ views regarding uses of social networking websites and text messaging for adolescent sexual health education. American Journal of Health Education, 42(4), 205–212. doi:10.1080/19325037.2011.10599189 PMID:22229150 Setoyama, Y., Yamazaki, Y., & Namayama, K. (2011). Benefits of peer support in online Japanese breast cancer communities: Differences between lurkers and posters. Journal of Medical Internet Research, 13(4), e122. doi:10.2196/jmir.1696 PMID:22204869 Shrank, W. H., Choudhry, N. K., Swanton, K., Jain, S., Greene, J. A., Harlam, B., & Patel, K. P. (2011). Variations in structure and content of online social networks for patients with diabetes. Archives of Internal Medicine, 171(17), 1589–1591. doi:10.1001/archinternmed.2011.407 PMID:21949173 Signorini, A., Segre, A. M., & Polgreen, P. M. (2011). The use of Twitter to track levels of disease activity and public concern in the US during the influenza A H1N1 pandemic. PLoS One, 6(5), e19467. doi:10.1371/journal.pone.0019467 PMID:21573238 Smailhodzic, E., Hooijsma, W., Boonstra, A., & Langley, D. J. (2016). Social media use in healthcare: A systematic review of effects on patients and on their relationship with healthcare professionals. BMC Health Services Research, 16(1), 442. doi:10.118612913-016-1691-0 PMID:27562728 Takahashi, Y., Uchida, C., Miyaki, K., Sakai, M., Shimbo, T., & Nakayama, T. (2009). Potential benefits and harms of a peer support social network service on the internet for people with depressive tendencies: Qualitative content analysis and social network analysis. Journal of Medical Internet Research, 11(3), e29. doi:10.2196/jmir.1142 PMID:19632979 Tian, Y. (2010). Organ donation on Web 2.0: Content and audience analysis of organ donation videos on YouTube. Health Communication, 25(3), 238–246. doi:10.1080/10410231003698911 PMID:20461609 Timpka, T., Eriksson, H., Ludvigsson, J., Ekberg, J., Nordfeldt, S., & Hanberger, L. (2008). Web 2.0 systems supporting childhood chronic disease management: A pattern language representation of a general architecture. BMC Medical Informatics and Decision Making, 8(1), 54. doi:10.1186/1472-69478-54 PMID:19040738

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Van de Belt, T. H., Engelen, L. J., Berben, S. A., Teerenstra, S., Samsom, M., & Schoonhoven, L. (2013). Internet and social media for health-related information and communication in health care: Preferences of the Dutch general population. Journal of Medical Internet Research, 15(10), e220. doi:10.2196/ jmir.2607 PMID:24088272 Van Uden-Kraan, C., Drossaert, C., Taal, E., Seydel, E., & van de Laar, M. (2008). Self-reported differences in empowerment between lurkers and posters in online patient support groups. Journal of Medical Internet Research, 10(2), e18. doi:10.2196/jmir.992 PMID:18653442 Volpp, K. G., & Namita, S. M. (2017). Patient engagement survey: Social networks to improve patient health. NEJM Catalyst, (November).

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Wentzer, H. S., & Bygholm, A. (2013). Narratives of empowerment and compliance: Studies of communication in online patient support groups. International Journal of Medical Informatics, 82(12), e386–e394. doi:10.1016/j.ijmedinf.2013.01.008 PMID:23523082 Young, S. D., & Rice, E. (2011). Online social networking technologies, HIV knowledge, and sexual risk and testing behaviors among homeless youth. AIDS and Behavior, 15(2), 253–260. doi:10.100710461010-9810-0 PMID:20848305

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This research was previously published in the International Journal of e-Collaboration (IJeC), 15(2); pages 23-43, copyright year 2019 by IGI Publishing (an imprint of IGI Global).

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Chapter 20

Online Social Support Groups/Communities:

Implications of Theoretical and Empirical Findings for Individuals Coping With Health Concerns Liza Ngenye George Mason University, USA Kevin Wright George Mason University, USA

ABSTRACT

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Numerous studies over the past two decades suggest that people with a variety of health concerns are increasingly turning to online networks for social support. This has led to the rise of online support groups/communities for people facing health concerns. Researchers have found that these groups/communities provide patients, disease survivors, and caregivers a number of advantages and disadvantages in terms of mobilizing social support for their health-related concerns. This chapter will examine these issues in greater detail as well as the theoretical and practical implications of this body of research for patients who use online support communities to help cope with and manage a variety of health issues. It will provide an overview of online social support and health outcomes, discuss key processes and theoretical explanations for the efficacy of online support communities for people facing health concerns, and the limitations of this body of research as well as an agenda for future communication research on health-related online support groups/communities.

DOI: 10.4018/978-1-6684-2414-8.ch020

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Research Anthology on Improving Health Literacy Through Patient Communication and Mass Media, edited by Association, Information Resources Management, IGI Global, 2021. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/nyulibrary-ebooks/detail.action?docID=6686709. Created from nyulibrary-ebooks on 2021-09-02 06:30:41.

 Online Social Support Groups/Communities

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INTRODUCTION Numerous studies over the past two decades suggest that people with a variety of health concerns are increasingly turning to online networks for social support. This has led to the rise of online support groups/communities for people facing health concerns, growing from several thousand support groups/ communities in the late 1990’s to hundreds of thousands of groups/communities by 2012 (Chou, Hunt, Beckjord, Moser, & Hesse, 2009; Fox, 2011; National Cancer Institute, 2013; Wright & Bell, 2003). A survey conducted by the National Cancer Institute (2012) indicated that almost 5% of all adult American Internet users—approximately 7.5 million people—visited a health-related online support community during 2012. Another study found that 18% of people had used the Internet in the last year to find information from a peer with similar health concerns (Fox &Duggan, 2013). Researchers have found that these groups/communities provide patients, disease survivors, and caregivers a number of advantages (and some disadvantages) in terms of mobilizing social support for their health-related concerns. Online health-related support groups/communities are frequently used by individuals with rare health conditions/issues that are not well understood by physicians, conditions/ issues that are difficult for health care providers to explain in layperson terms, or if members of one’s primary social network (i.e. friends and family members) have limited knowledge of a person’s health condition (Campbell-Grossman et al., 2009; Tanis, 2008; Tong et al., 2013). Due to these issues, many individuals report that they receive inadequate informational support from their traditional social networks and health care providers; and they appear to perceive online support groups/communities as a better alternative for receiving health information (Wicks et al., 2010). Moreover, research in this area has found that online community members enjoy the ability to draw upon the collective experience of other online participants who are dealing with a similar health issue in ways that are not possible in the face-to-face world. For example, the Internet allows people to access and interact with others in health-related online communities that cross geographical and temporal boundaries (Rains & Wright, 2016). In addition, other participants within these online communities appear to replace or extend traditional offline support networks in terms of providing greater access to different forms of social support. Accessing support providers online has the added benefit of finding people who are available in a larger, easier to maintain, network of (often) geographically separated individuals compared to face-to-face sources of social support (Ellison et al., 2007; Kim & Lee, 2011; Walther & Boyd, 2002). Online support groups/communities can also help individuals facing health concerns during times of stress and transition to access new networks of support, such as providing connections to others facing the same or similar transitions and stressors (such as if a person moves to a small town where the likelihood of meeting others living with a similar health condition is low). In addition to convenience, online sources of social support can help individuals with health problems overcome accessibility barriers and high service fees associated with other (more traditional) sources of information and support, such as therapy (Barrera, 2000). The asynchronous and mediated nature of online communication helps alleviate time and space barriers that exist for support settings that require the simultaneous presence of conversational partners (Turner, Grube, & Meyers, 2001). Online support groups/communities often offer people who are coping with health problems higher quality health information and support for health behavior change than is available among traditional, face-to-face sources of support (Wright & Miller, 2010). This chapter will examine each of these issues in greater detail as well as the theoretical and practical implications of this body of research for patients who use online support communities to help cope with 350

Research Anthology on Improving Health Literacy Through Patient Communication and Mass Media, edited by Association, Information Resources Management, IGI Global, 2021. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/nyulibrary-ebooks/detail.action?docID=6686709. Created from nyulibrary-ebooks on 2021-09-02 06:30:41.

 Online Social Support Groups/Communities

and manage a variety of health issues. Specifically, it will review current literature on communication issues related to social support within online support groups/communities for individuals facing health concerns published within the health communication literature. Toward that end, it will provide an overview of online social support and health outcomes, and it will discuss key processes and theoretical explanations for the efficacy of online support communities for people facing health concerns. Finally, the chapter provides an overview of some of the limitations of this body of research as well as an agenda for future communication research on health-related online support groups/communities.

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ONLINE SOCIAL SUPPORT AND HEALTH OUTCOMES Social support refers to the emotional (e.g., empathy and encouragement), informational (e.g., advice), or instrumental (e.g., financial and physical) resources provided by one’s social networks that help her or him to cope with stressful events (Cohen, 2004). Studies across a number of disciplines have reported the benefits of peer-to-peer social support groups (both in groups led by peers and supervised by professionals) where individuals can interact with others who are experiencing the same disease or similar health condition (Ussher, Kirsten, Butow, & Sandoval, 2006). Supportive communication with peers who share common health-related experiences may decrease feelings of isolation and increase a sense of belonging (Cohen, Underwood, & Gottlieb, 2000; Ussher et al., 2006). Based on a shared identity and perceived similarity among peers, individuals in peer support groups (both face-to-face and online) tend to perceive information provided by peers as more credible (Campbell & Wright, 2002; Petosa & Smith, 2014) and participants are more likely to engage in empathic communication (Helgeson & Gottlieb, 2000) than in other contexts. Social support plays an important role in one’s ability to cope with a range of stressors from mundane everyday stressful situations to significant life events (Goldsmith, 2004; Uchino, 2004). Two general explanations have been offered for the effects of social support on well-being. First, the direct-effects model posits that simply being involved in interpersonal relationships can lead to physical and psychological benefits (Aneshensel & Stone, 1982; Thoits, 2011), even in the absence of a specific stressor. Ties between individuals influence human health positively if they satisfy the need to be socially and emotionally connected with others (Sorkin, Rook, & Lu, 2002). Second, the buffering model suggests that social support serves to directly shield a person from a stressor or positively alter one’s appraisal of the stressor. For example, an individual may receive advice to help him or her solve a problem or feedback to change his or her perceptions of its severity. Researchers have linked the buffering model to positive health outcomes in terms of morbidity and mortality (Berkman & Syme, 1979). Studies have found that social support in online support communities buffers the harmful physiological consequences of stress from breast cancer (Barak, Boniel-Nissim, & Suler, 2008). For example, depressive symptoms such as feelings of isolation, hopelessness, anxiety, and a lack of interest were found to be decreased in patients who received emotional support, such as empathy and encouragement, from peers in a number of online support communities (Batenburg & Das, 2015). Individuals using healthrelated online support communities report higher quality of life after participating in online communities (Lieberman & Goldstein, 2006). Moreover, the information that is exchanged within online support communities appears to contribute to an improvement in information competence (Han et al., 2012) and knowledge of disease and its treatment among patients (Høybye et al., 2005; Owen et al., 2004), leading them to feel more in control of their health situation. 351

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 Online Social Support Groups/Communities

The amount of time spent using online support communities has been shown to be associated with users’ size and satisfaction with their online support network (Wright, 2000) as well as decreased rates of depression over the course of a year among depression community members (Houston, Cooper, & Ford, 2002; Wright et al., 2010). Participating in health-related online support groups/communities has also been linked to other positive mental health outcomes such as self-efficacy and optimism (Mo & Coulson, 2013). Online support is associated with online support group participants’ perceived coping abilities (Seçkin, 2013). In general, studies have shown a positive association between members’ wellbeing and support received from using online groups/communities (Mo & Coulson, 2013; Oh, Ozkaya, & LaRose, 2014; Rains & Keating, 2011). Researchers have also investigated the impact that online support groups/communities have on how people cope with critical or chronic diseases (Eichhorn, 2008; Guo & Goh, 2014; Johnston, Worrell, Di Gangi, & Wasko, 2013; Rodgers & Chen, 2005), how often people use the online health communities looking for health information (Kummervold et al., 2008), which sources of information are used in online health communities (Rodgers & Chen, 2005), which factors contribute or obstruct the use of the online health communities when searching for health information (Lemire, Paré, Sicotte, & Harvey, 2008), and how social support is requested and offered on these sites (Mazzoni & Cicognani, 2014).

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BENEFITS AND PROBLEMS ASSOCIATED WITH SEEKING SUPPORT WITHIN ONLINE SUPPORT GROUPS/COMMUNITIES A growing number of studies have investigated the benefits of online support groups/communities for people facing a variety of health concerns (See Green‐Hamann, Campbell Eichhorn, & Sherblom, 2011; Malik & Coulson, 2008; Rains, Peterson, & Wright, 2015; Rains & Young, 2009; Wright & Bell, 2003). In terms of benefits, online support communities allow individuals to discuss health-related topics with others who have been through similar experiences, to support one another and talk about the unique difficulties associated with illness (Attard & Coulson, 2012; Coulson, 2005). Online communities provide flexible access to social support at any time of the day or night (Malik & Coulson, 2008), making it easy to fit support needs around work, family, study or other commitments. However, the lack of physical proximity can make it difficult to develop meaningful relationships and offer physical comfort, which may leave some members feeling isolated in real life. Research examining computer-mediated communication (CMC) support has largely focused on explaining why people choose to use CMC for exchanging support (Tanis, 2008; Walther & Boyd, 2002; Wright, 2002) and identifying the types of support messages shared online (Rains, Peterson, & Wright, 2015). Although less plentiful, there is also evidence to suggest that support received or available in computer-mediated contexts can be a valuable coping resource (Rains & Keating, 2011; Wright, 2000). The sense of community an online support group creates for its members provides similar health benefits to traditionally shared face-to-face social support in terms of important outcomes like reduced stress and depression, faster recovery times, etc. (Rains & Young, 2009), but online support offers the affordances of being able to transcend geography and temporality as well as offer people greater ease in terms of communicating with a large network of potential support providers (Bambina, 2007; Wright & Bell, 2003). Several studies have found that participation in online support groups/communities is influenced by perceptions of the convenience, flexibility, and relative anonymity of computer-mediated communication associated with these groups. Online support groups/communities typically include 352

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 Online Social Support Groups/Communities

greater accessibility (e.g., lack of time and travel constraints), anonymity, and the ability to obtain information without having to personally interact with others (Eichhorn, 2008; Green-Hamann, Campbell Eichhorn, & Sherblom, 2011; Wright & Bell, 2003) compared to face-to-face forms of social support. Unlike face-to-face support groups, online support venues offer participants access via computer and other Internet accessible devices 24 hours a day and access to potential support providers all over the world (Tanis, 2008; Wright & Bell, 2003). In addition, the anonymity of online groups/communities appears to influence increased self-disclosure of one’s health issues to other group/community members (Wright & Bell, 2003). However, online support group members can also face a variety of challenges (van Uden-Kraan et al., 2008), such as the quality and validity of information exchanged (Finn, 1999; Wright, 2002) and potential exposure to negative or self-destructive postings that may undermine the health benefits of online support (Campbell & Wright, 2002; Wright & Bell, 2003). Moreover, researchers have identified other negative aspects of online support communities that may influence health outcomes, including flaming and delayed feedback in computer-mediated interactions, short-term participation, and negative social comparisons (Wright, 2000; Wright & Bell, 2003). More recent studies have identified online communities that actually support and encourage unhealthy behaviors, such as anorexia, and substance abuse, and other health behaviors (Custers & Van den Bulck, 2009; Davey, Schifano, Corazza, & Deluca, 2012).

THEORETICAL EXPLANATIONS OF ONLINE SUPPORT COMMUNITY COMMUNICATION PROCESSES AND HEALTH BENEFITS FOR PARTICIPANTS

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Similarity/Social Comparisons Similarities between participants in online support groups/ communities appear to increase the persuasiveness and influence of the messages that are exchanged. For example, Wang, Walther, Pingree, and Hawkins (2008) showed that perceived similarity of support group members influenced perceptions of their credibility and, in turn, the evaluation of health information they provided. In addition, Wright (2000) and Campbell and Wright (2002) found that similarity was a key perception that was associated with social support satisfaction with support providers within health-related online support groups (which may be a motivation to participate). Campbell et al. (2004), for example, claimed that “those who have survived the disease have an understanding and first-hand experience of the disease and its treatment that facilitates shared experiences” (p. 4). Similarly, Meyer, Coroiu, and Korner (2015) found that patients can be ideal support providers because they have “authentic knowledge of what it is like to live with the disease, and they are able to bring a unique perspective to the support process. Moreover, disease survivors generally present better physical functioning and emotional well-being than newly diagnosed patients (Baker, Denniston, Haffer, & Liberatos, 2009). Survivors and long-term online community members may possess more resources to provide informational and emotional support to other participants who are newly diagnosed or in the early stages of a health problem (Cameron, Ashbury, & Iverson, 1997; Wright, 2000). More experienced online community members can take a leading role in offering social support by providing information and their experiences of coping (Meier, Lyons, Frydman, Forlenza, & Rimer, 2007; Wright & Bell, 2003). Social comparison theory (Festinger, 1954) proposes that people use either upward or downward comparison to cope with stressful events. Upward comparison includes seeking affiliation with and infor353

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 Online Social Support Groups/Communities

mation from those who are in a better condition, whereas downward comparison refers to self-evaluation against others in a worse situation (Taylor & Lobel, 1989). Buunk, Collins, Taylor, VanYperen, and Dakof (1990) later distinguished positive upward comparison, in which individuals become optimistic to see others in a better situation (i.e., upward identification), from negative upward comparison by which people become pessimistic to see others in a better situation (i.e., upward contrast). Studies have found that participants often glean information about the status of their health issues through social comparisons that take place within supportive interactions in online support groups/ communities (Batenburg & Das, 2015; Vilhauer, 2009; Wright & Bell, 2003). Such social comparison processes do not even require actual participation in the online group; rather, individuals may engage in these practices passively by reading the posted group discussions. A few studies have shown that (positive) upward comparison is related to the self-improvement of cancer patients, such as developing coping strategies, finding hope, and learning useful information (Taylor & Lobel, 1989). Furthermore, women with breast cancer tend to have a greater desire for upward comparison, thereby seeking information and emotional support from better-adjusted patients versus poorly adjusted patients (Stanton et al., 1999). Although the previous literature on social comparison in cancer care has not specified the role of cancer survivors, given a better understanding of cancer treatment and psychological adjustment of survivors (Baker et al., 2009; Meyer et al., 2015), positive upward comparison may occur when newly diagnosed patients receive social support from survivors, which in turn contributes to the psychological adjustment of new patients. However, there are also several significant limitations of support community participation from a social comparison perspective. The most common involves stress resulting from hearing about difficulties experienced by other community members (Holbrey & Coulson, 2013; Malik & Coulson, 2008). Other drawbacks include social comparisons with others who are improving (Malik & Coulson, 2008) and becoming negatively focused on one’s illness (Holbrey & Coulson, 2013).

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Strength of Weak Ties Online support groups/communities are generally considered networks of largely weak-tie relationships (Wright & Bell, 2003). Online groups can be beneficial by offering connections to relevant peers (Scharer, 2005) and expanding access to resources and social capital by gaining access to others’ online networks via the online support community (Walther & Boyd, 2002; Wright & Miller, 2010). However, weak-tie networks can also come with costs because members of online groups lack control over the quality, content, and validity of presented information (Finn, 1999; Klemm et al., 2003; Wright, 2002). According to Colineau and Paris (2010), people choose weak tie networks because of the members’ ability to understand their experience and because of the emotional distance afforded by the online communication. Another advantage of weak ties is that they tend to be more plentiful than strong ties, and they are more likely to be different from the receiver and from one another. This means there is a greater likelihood of being able to find an expert in a particular area in weak tie rather than strong tie sources. Members of weak tie networks may be more willing to talk about illness since these individuals tend to be less emotionally attached to a person (Adelman, & Albretcht, 1987). Weak tie network members are often able to provide more objective feedback about a problem since they are less emotionally attached to a person with health problems than family and friends. According to Goldsmith and Albrecht (2011), weaker ties tend to be perceived as helpful when a person is coping with an issue that requires new information or skills (that may be limited within a close-knit family or friendship social network). These features of weak ties can be beneficial to people who are coping with health concerns that may be 354

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 Online Social Support Groups/Communities

difficult to ameliorate in strong ties due to lack of information and relational problems in close relationships (Winefield, 2006; Wright & Miller, 2010). Several researchers have found weak tie network theory to be applicable to explaining why some individuals prefer to obtain social support online (including online support groups/communities) versus via traditional offline networks (Green-Hamman & Sherblom, 2014; Wright & Rains, 2013; Wright, Rains, & Banas, 2010; Wright & Miller, 2010). When members of traditional offline social networks have limited knowledge about a stressful situation, there is evidence that individuals often turn to online sources of information and social support (Wright & Miller, 2010) despite the fact that they may feel less close relationally to the people with whom they interact online. Additionally, when online sources are able to offer specialized information about a problem and/or may be in a better position to offer desired types of social support (such as increased empathy and less judgment due to sharing similar problems).

Reduced Stigma Another important theoretical explanation for why online support groups/community participation is associated with positive health outcomes is the group’s ability to help individuals cope with the stigma that the larger culture attaches to many diseases and health conditions (Ballantine & Stephenson, 2011; Faith, Thorburn, & Sinky, 2016; Lewis, Thomas, Blood, Castle, Hyde, & Komesaroff, 2011; Rains, 2014; Wright & Rains, 2014). Health-related stigma is a significant problem that many individuals facing health concerns have to deal with on a daily basis (Herek & Glunt, 1988). It has been linked to reductions in the size of individuals’ support networks, problems discussing concerns with others, dissatisfaction with one’s support network, reduced compliance with treatment recommendations, and increased health problems (Vanable, Carey, Blair, & Littlewood, 2006). Stigmatized health issues have been linked to increased stress and depression (Wolitski, Pals, Kidder, Courtenay-Quirk, & Holtgrave, 2008), substance abuse, anxiety, and increased physical health problems (Duncan, Hart, Scoular, & Bigrigg, 2001). Health-related stigma is also associated with reduced levels of self-esteem and selfefficacy (Herek & Glunt, 1988). Researchers have found that people with stigmatized health problems are drawn to online support groups/ communities because these groups/communities help them to manage the stigma, leading them to feel less isolated and less judged by others (Lewis et al., 2011; Rains, 2014; Wright & Miller, 2010; Wright & Rains, 2014).

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Reduced Cues/Social Information Processing Theory One variable that makes computer-mediated communication (CMC) unique is the reduction in social cues relative to face-to-face interaction (Caplan & Turner, 2007; Rains & Young, 2009; Tanis, 2008; Walther & Parks, 2002; Wright & Bell, 2003). This reduction in social cues is particularly important given the setting in which several popular forms of CMC are used for support. Although it is possible to routinely communicate with well-known others (e.g., Turner et al., 2001), one-time interactions often take place in online health-related communities and blogs among individuals who have never met and will not interact in the future. Informal social support communities, for example, typically have open membership in which an unlimited number of individuals can come and go as they please (Rains & Young, 2009). Computer-mediated communication (CMC) can be unique from face-to-face interaction in several important ways (See Caplan & Turner, 2007; Tanis, 2008; Wright & Bell, 2003). For example, many of the social cues available in face-to-face interaction (e.g., eye contact, paralinguistic cues, etc.) are reduced 355

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 Online Social Support Groups/Communities

or absent in online interaction. Walther and Parks (2002) referred to the reduction in social cues as one of two structural aspects of social support that are fundamentally altered by CMC. Even as communication technologies continue to evolve, the reduction in social cues is likely to remain an important variable across different CMC modes. The hyperpersonal communication model (Walther, 1996) is a popular theoretical framework that has been applied to the context of online supportive communication (Caplan & Turner, 2007; Walther & Boyd, 2002; Wright & Bell, 2003). This model outlines a process resulting in communication that is “more socially desirable than we tend to experience in parallel [face-to-face] interactions’’ (Walther, 1996, p. 17). Two aspects of the hyperpersonal model are important in terms of explaining the influence of using CMC on the outcomes of supportive interaction. The reduced social cues associated with CMC create opportunities for selective self-presentation that may serve to mitigate self-presentation concerns and allow individuals to give greater attention to message construction (Walther & Boyd, 2002; Wright & Bell, 2003). Support seekers report feeling less self-conscious and more comfortable sharing supportive messages since health-related online communities are typically perceived as comfortable and non-threatening environments in terms of forming and maintaining interpersonal relationships (Caplan & Turner, 2007). This more comfortable communication environment appears to facilitate individuals’ efforts to cope with their stressor and allow them to better manage their uncertainty as well as feel less worry and greater self-efficacy relative to a face-to-face interaction. Features of computer-mediated communication within online support communities may also lead support seekers to construct idealized perceptions of support providers (Walther & Boyd, 2002; Wright & Bell, 2003). Idealized perceptions can be explained by the hyperpersonal model. According to Walther (1996), the reduced number of available nonverbal cues in CMC increases message-editing capabilities, and the temporal features of CMC allow communicators to be more selective and strategic in their self-presentation, and engage in more intimate exchanges than people in face-to-face situations. These features of computer-mediated communication appear to offer people more interactional control over face-toface communication, and they appear to influence perceptions of the attractiveness of online relational partners. Walther, Slovacek, and Tidwell (2001) found that individuals rated online interaction partners as more socially attractive and affectionate when a photo was not present compared to those who did view a photo of the interaction partner. In addition, dyads in computer-mediated settings also appear to self-disclose more than face-to-face dyads (Tidwell & Walther, 2002). Given the nature of supportive interactions in which support providers are attempting to be empathetic and offering encouragement and advice, receivers may develop inflated perceptions of the degree to which providers are caring or knowledgeable. The reduced social cues associated with CMC may ultimately result in receivers developing an exaggerated sense of being supported by providers (Wright & Bell, 2003). Similar to social information processing theory, the dual-process theory of supportive message outcomes (Bodie & Burleson, 2008; Burleson, 2010) has been used to help understand the implications of the reduced social cues in CMC during supportive interactions. An important way that the reduced social cues in CMC may impact support processes is by increasing support recipients’ attentional resources. Because they have less responsibility for managing nonverbal behavior (e.g., eye contact) relative to face-to-face interaction, individuals using CMC may pay greater attention to articulating their thoughts and feelings as well as the messages received from a communication partner. This appears to allow for the construction of more thoughtful and competent supportive messages. However, the reduced social cues in computer-mediated interaction have the potential to undermine the benefits of supportive interactions. The cues-filtered-out perspective (Culnan & Markus, 1987) is 356

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 Online Social Support Groups/Communities

grounded in the idea that the reduction in social cues stemming from CMC inhibits socio-emotional messages and the development of personal relationships (Kiesler, Siegel, & McGuire, 1984). In the context of social support, the cues-filtered-out perspective suggests that the reduction in social cues could serve to encourage more impersonal interactions (White & Dorman, 2001) and make the process of exchanging support more difficult (Lewandowski, Rosenberg, Parks, Siegel, 2011; Wright & Bell, 2003). In terms of the influence of reduced cues in CMC and self-disclosure to others in online support groups/communities, Wright (2000) found that older adults using SeniorNet (an early online community for older adults) reported disclosing information about their health to anonymous members of the online community that they were reluctant to discuss with family members and friends in face-to-face settings. Anonymity led seniors using the community to feel safer disclosing health information within the online group. Walther and Boyd (2002) found that hyperpersonal interaction within online support groups/communities enhanced the attractiveness of seeking support within this context. In particular, these researchers found that perceived social distance from other participants facilitated perceptions of reduced risk in terms of disclosing sensitive or stigmatized issues (including health concerns). Eysenbach (2003) drew upon social information processing theory, and found that anonymity of virtual support communities was particularly helpful in terms of facilitating the participation of men living with health concerns to interact with others within these groups. Eysenbach (2003) argued that the reduced cues in this environment were particularly helpful for men to obtain online support for health concerns since they tend to be culturally and socially conditioned not to ask for help and support.

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AGENDA FOR FUTURE RESEARCH IN THE AREA OF ONLINE SUPPORT GROUPS/COMMUNITIES Since online support groups/communities will likely continue to flourish and change in the coming years, as newer technologies will likely transform the ways in which people with health concerns connect and garner support from others online, it is important to examine some of the limitations of the current literature in this area of research as well as opportunities to better understand online support groups/ communities, supportive communication processes within them, and their relationship to important psychological and physical health outcomes. This section presents a brief agenda for scholars who are interested in conducting research in this area. Theories and methods in future research in this area need to take into account a more comprehensive perspective of the influence of both types of social support on health outcomes, including the main effects and interaction effects of online and offline sources of social support, additional predictors of engaging in online support, mediated variables (i.e., the influence of different computer-mediated channels and contexts), and key demographic and environmental variables on health outcomes. There are many limitations of the existing research in this area that need to be addressed in future work. While a number of theoretical frameworks have been utilized in the study of online support and health outcomes, this area would benefit from the development of new theories that shed light on features of online support that are unique from offline supportive contexts. This section discusses some of the key limitations to the existing research as well as fruitful areas of research and theory development within this area. One of the first limitations of previous studies concerns the need to account for the influence of overlapping sources of social support on key outcome variables, such as stress and depression. For example, according to Haythornthwaite (2002), both online and off-line supportive exchanges influence 357

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 Online Social Support Groups/Communities

health outcomes. In short, it becomes difficult to separate online supportive influences from off-line influences. Most individuals typically mix face-to-face contact with e-mail, or searching the Internet for health information and then discussing it with people in their face-to-face social network. Future research should assess the interaction of both online and face-to-face support networks on key outcome variables such as satisfaction, well-being, stress, depression, and physical health outcomes while also comparing differences between support from these two networks in terms of how they uniquely contribute to these outcomes. Future research in this area would benefit from the development of theories and methods that take into account a more comprehensive perspective of the influence of social support on health outcomes, including the main effects and interaction effects of online and off-line sources of social support, additional predictors of engaging in online support, mediated variables (i.e., the influence of different computer-mediated channels, contexts), and key demographic and environmental variables on health outcomes. Research is also needed to examine interaction(s) between face-to-face and online social support networks as well as how new communication technologies are facilitating the intersection of virtual and face-to-face interactions through media convergence (e.g., GPS chips and applications that allow you to find key people in your support network in the face-to-face world). For example, although research has examined the influence of mobile games on physical activity levels (Fanning, Mullen, McAuley, 2012), few studies have specifically focused on the role of social support on health outcomes within this context. More research is needed to better understand a wider variety of health issues and the influence of multimodal communication (e.g., online communication combined with face-to-face interaction) and mobile/ online social support processes on key health outcomes, such as stress, depression, and physical health. As research studies on social support networks/relationships and health continue to develop, more metaanalyses and meta-analytic reviews will be needed to assess the impact of social networks/relationships on health across similar studies. Meta-analytic reviews have contributed greatly to our understanding of newer areas, such as online support group network, influences on health. For example, Rains and Young (2009) conducted a meta-analysis of 28 published online support group studies dealing with people coping with health concerns and found that greater participation in their online support groups was related to increased perceived support, reduced depression, increased quality of life, and increased self-efficacy in terms of managing health problems. Meta-analytic can also help researchers identify key mechanisms that help to explain or moderate the influence of online support networks on health outcomes. More studies are needed to better understand complex cultural differences in how social support networks influence is conceptualized, how social support communication processes may differ, and cultural influences on health outcomes across a wide variety of cultural contexts. In addition, more research is needed in the area of cross-cultural and international comparisons in terms assessing the relationship between social network and interpersonal dyadic support on important health outcomes (including regionally specific health issues) (Goldsmith & Albrecht, 2011). In addition, more research is need to better understand how online social support is used by older adults and the challenges they may face in terms of accessing and using newer communication technologies. While researchers have examined online support and health-related technology for older adults (Wright, 2000; LeRouge et al., 2014), more research and interventions are needed to design online support platforms and technologies for older adult populations. Relatively little is known about how minority groups and other populations facing health disparities use computer-mediated support groups. However, it appears that members of minority groups engage in a variety of online social support activities, and individuals within these groups may benefit from online support group/community interventions (Hong, Pena-Purcell, & Ory, 358

Research Anthology on Improving Health Literacy Through Patient Communication and Mass Media, edited by Association, Information Resources Management, IGI Global, 2021. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/nyulibrary-ebooks/detail.action?docID=6686709. Created from nyulibrary-ebooks on 2021-09-02 06:30:41.

 Online Social Support Groups/Communities

2012). For example, Fogel, Albert, Schnabel, Ann Ditkoff, and Neugut (2003) found that while African Americans, Hispanics, and Asian Americans tend to use the Internet less than whites, their Internet use was associated with greater ability to talk with someone about problems and to obtain other types of social support. Weinert and Hill (2005) found that rural women (including a high percentage of minorities) using an online support group intervention had lower levels of depression and higher self-reported management of day-to-day chronic illness symptoms than a control group of similar rural women living with chronic illness. Qualitative research and quantitative studies can both make important contributions to the study of cultural influences on social support network and health outcome processes (as well as to the larger area of social support and health research). While quite a bit research in the area of social support groups/communities and health outcomes has been conducted in a variety of countries around the world, most of the research has been conducted in a relatively small number of countries in Europe and Asia (mainly China) (Deng et al., 2010; Rao et al, 2012; Van Tilburg, 1998). In recent years, smartphones have become the primary way people gain access to the Internet and social media. New mobile applications have taken advantage of the media convergence potential of smartphone (e.g., GPS combined with wireless Internet, video, etc.). At the same time, we have witnessed the emergence of wearable electronic devices that track physical activity (e.g., Fitbit). Both innovations have led to the burgeoning field of MHealth (Boulos et al., 2014; Luxton et al., 2011). While much of this research has examined the impact of smartphones on provider-patient communication, a number of researchers have examined the social support potential of smartphones (Boulos et al., 2014). Although diet and exercise applications and devices are currently the most widely used health-related features of smartphones (Boulos et al., 2014), other applications are available for a variety of health issues, including alcohol addiction recovery support, smoking cessation support, and support for mental health issues (Luxton et al., 2011; Alvarez-Jimenez et al., 2014). These types of MHealth applications can allow researchers to access available data from smartphones, including activity levels and diet information, which can be used as important health outcome measures. Moreover, these applications also provide the names/online contacts of online social network members with whom an individual shares his or her health information via these applications.

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CONCLUSION The findings from the reviewed literature provide support for the idea that online support groups/communities have health benefits for a variety of people facing health concerns. As online support among members of these populations will likely continue in the future, researchers need to continue gaining a better understanding of the nature of online support group/ community processes and outcomes. While scholars have identified a number of theoretical frameworks that help to explain key processes of online support groups/communities and their relationship to health outcomes, new theoretical perspectives are needed to capture the complexity of this phenomenon. Scholars should work on integrating overlapping concepts from the major theories discussed in this article, and they should take into account the unique influences that computer-mediated communication has on supportive relationships within these groups/ communities.

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Van Tilburg, T. (1998). Losing and gaining in old age: Changes in personal network size and social support in a four-year longitudinal study. The Journals of Gerontology. Series B, Psychological Sciences and Social Sciences, 53(6), S313–S323. doi:10.1093/geronb/53B.6.S313 PMID:9826973 van Uden-Kraan, C. F., Drossaert, C. H., Taal, E., Shaw, B. R., Seydel, E. R., & van de Laar, M. A. (2008). Empowering processes and outcomes of participation in online support groups for patients with breast cancer, arthritis, or fibromyalgia. Qualitative Health Research, 18(3), 405–417. doi:10.1177/1049732307313429 PMID:18235163 Vanable, P. A., Carey, M. P., Blair, D. C., & Littlewood, R. A. (2006). Impact of HIV-related stigma on health behaviors and psychological adjustment among HIV-positive men and women. AIDS and Behavior, 10(5), 473–482. doi:10.100710461-006-9099-1 PMID:16604295 Vilhauer, R. P. (2009). Perceived benefits of online support groups for women with metastatic breast cancer. Women & Health, 49(5), 381–404. doi:10.1080/03630240903238719 PMID:19851944 Walther, J. B. (1992). Interpersonal effects in computer-mediated interaction: A relational perspective. Communication Research, 19(1), 52–90. doi:10.1177/009365092019001003 Walther, J. B. (1996). Computer-mediated communication: Impersonal, interpersonal, and hyperpersonal interaction. Communication Research, 23(1), 3–43. doi:10.1177/009365096023001001 Walther, J. B. (2007). Selective self-presentation in computer-mediated communication: Hyperpersonal dimensions of technology, language, and cognition. Computers in Human Behavior, 23(5), 2538–2557. doi:10.1016/j.chb.2006.05.002 Walther, J. B., & Boyd, S. (2002). Attraction to computer-mediated social support. In C. A. Lin & D. Atkin (Eds.), Communication technology and society: Audience adoption and uses (pp. 153–188). Cresskill, NJ: Hampton Press. Walther, J. B., & Parks, M. R. (2002). Cues filtered out, cues filtered in. Handbook of interpersonal communication, 3, 529-563. Walther, J. B., Slovacek, C., & Tidwell, L. C. (2001). Is a picture worth a thousand words? Photographic images in long term and short term virtual teams. Communication Research, 28(1), 105–134. doi:10.1177/009365001028001004

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Wang, Z., Walther, J. B., Pingree, S., & Hawkins, R. P. (2008). Health information, credibility, homophily, and influence via the Internet: Web sites versus discussion groups. Health Communication, 23(4), 358–368. doi:10.1080/10410230802229738 PMID:18702000 Weinert, C., & Hill, W. G. (2005). Rural women with chronic illness: Computer use and skill acquisition. Women’s Health Issues, 15(5), 230–236. doi:10.1016/j.whi.2005.06.002 PMID:16165009 White, M., & Dorman, S. M. (2001). Receiving social support online: Implications for health education. Health Education Research, 16(6), 693–707. doi:10.1093/her/16.6.693 PMID:11780708 Winefield, H. R. (2006). Support provision and emotional work in an Internet support group for cancer patients. Patient Education and Counseling, 62(2), 193–197. doi:10.1016/j.pec.2005.07.002 PMID:16139466

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Wolitski, R. J., Pals, S. L., Kidder, D. P., Courtenay-Quick, C., & Holtgrave, D. R. (2008). The effects of HIV stigma on health, disclosure of HIV status, and risk behavior of homeless and unstably housed persons living with HIV. AIDS and Behavior, 13(6), 1222–1232. doi:10.100710461-008-9455-4 PMID:18770023 Wright, K. B. (1999). Computer-mediated support groups: An examination of relationships among social support, perceived stress, and coping strategies. Communication Quarterly, 47(4), 402–414. doi:10.1080/01463379909385570 Wright, K. B. (2000). Perceptions of online support providers: An examination of perceived homophily, source credibility, communication and social support within online support groups. Communication Quarterly, 48(1), 44–59. doi:10.1080/01463370009385579 Wright, K. B. (2002). Social support within an online cancer community: An assessment of emotional support, perceptions of advantages and disadvantages, and motives for using the community. Journal of Applied Communication Research, 30, 195–209. doi:10.1080/00909880216586 Wright, K. B. (2005). Researching Internet-based popu0lations: Advantages and disadvantages of online survey research, online questionnaire authoring software packages, and web survey services. Journal of Computer-Mediated Communication, 10(3), article 11. Available: http://jcmc.indiana.edu/vol10/issue3/ wright.html Wright, K. B. (2012). Emotional support and perceived stress among college students using Facebook. com: An exploration of the relationship between source perceptions and emotional support. Communication Research Reports, 29(3), 1–10. doi:10.1080/08824096.2012.695957 Wright, K. B., Bell, S. B., Wright, K. B., & Bell, S. B. (2003). Health-related support groups on the Internet: Linking empirical findings to social support and computer-mediated communication theory. Journal of Health Psychology, 8(1), 37–52. doi:10.1177/1359105303008001429 PMID:22113899 Wright, K. B., Johnson, A. J., Bernard, D. R., & Averbeck, J. (2011). Computer-mediated social support: Promises and pitfalls for individuals coping with health concerns. In T. L. Thompson, R. Parrott, & J. F. Nussbaum (Eds.), The Routledge handbook of health communication (2nd ed.; pp. 349–362). New York: Routledge. Wright, K. B., & Miller, C. H. (2010). A measure of weak tie/strong tie support network preference. Communication Monographs, 77(4), 502–520. doi:10.1080/03637751.2010.502538

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Wright, K. B., Rains, S., & Banas, J. (2010). Weak tie support network preference and perceived life stress among participants in health-related, computer-mediated support groups. Journal of ComputerMediated Communication, 15(4), 606–624. doi:10.1111/j.1083-6101.2009.01505.x Wright, K. B., & Rains, S. A. (2014). Weak tie support preference and preferred coping styles as predictors of perceived credibility within health-related computer-mediated support groups. Health Communication, 29(3), 281–287. doi:10.1080/10410236.2012.751084 PMID:23790220 Wright, K. B., Rosenberg, J., Egbert, N., Ploeger, N., Bernard, D. R., & King, S. (2013). Communication competence, social support, and depression among college students. A model of Facebook and face-toface support network influence. Journal of Health Communication, 18(1), 41–47. doi:10.1080/108107 30.2012.688250 PMID:23030518

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KEY TERMS AND DEFINITIONS Asynchronous/ Computer Mediated Communication/CMC: Information sent and received through computer, internet or other forms of media. Emotional Support: The sharing of emotions to assist one during health-related challenges, such as empathy and encouragement. Informational Support: The sharing of information to assist one during health-related challenges, such as advice and referrals. Instrumental Support/Resources: The sharing of financial or physical resources to assist one during health-related challenges, such as transportation or donations. Online Community/Network: Social networks that primarily engage through online platforms such as social media. Online Support Community/Network: Social networks that engage to provide informational and emotional support for various health-related challenges. Social Network: Members of one’s primary social environment such as friends and family. Social Support: The emotional, informational, or instrumental resources provided by one’s social networks that help one to cope with stressful events.

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This research was previously published in Global Perspectives on Health Communication in the Age of Social Media; pages 1-27, copyright year 2018 by Medical Information Science Reference (an imprint of IGI Global).

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Chapter 21

Impact of Patient Health Education on the Screening for Disease Test-Outcomes: The Case of Using Educational Materials From the Internet and Online Health Communities Thierry O. C. Edoh https://orcid.org/0000-0002-7390-3396 Technical University of Munich, Germany

ABSTRACT

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Screening for diseases is a medical process to predict, prevent, detect, and cure a disease in people at high risk. However, it is limited in the quality and accuracy of the outcomes. The reason for this is the lack of long-term data about the health condition of the patient. Launching modern information and communication technology in the screening process has shown promise of improving the screening outcomes. A previous study has shown that patient education can positively impact the patient behavior face to a disease and can empower the patient to adopt a healthy lifestyle and thus avoid certain diseases. Offering medical education to the patient can positively impact screening outcomes since educated and empowered patients are more aware of certain diseases and can collect significant information. This can minimize the rate of false positive as well as false negative screening results. This chapter analyzes how medical education can contribute to improving screening outcomes.

INTRODUCTION The screening for diseases is a medical test procedure to predict, prevent, early detect a disease of concern, and cure people at high risk to develop the said diseases. However, a screening for diseases has limitations. These limitations include the quality and accuracy of the screening-test-outcomes that can DOI: 10.4018/978-1-6684-2414-8.ch021

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 Impact of Patient Health Education on the Screening for Disease Test-Outcomes

be assessed based on the level of the test sensitivity and specificity which in turn can be measured based on the number of false-positive and false-negative test-outcomes. The main reasons underlying these limitations are under others the lack of long-term and accurate data about the health condition of a patient. Long-term data is data unbrokenly collected over a long period. This implies an appropriate health conditions and/or diseases awareness level. Health conditions awareness level and individual’s behavior towards diseases are associated with the patient health education level. Patient education can also empower individuals to adopt a healthy lifestyle. Based on the existing literature, the patient education is supported by the health literacy which in turn influences health outcomes. Since the medical knowledge level is, somehow, associated with the health outcomes, a question arises: can the patient health education and the health literacy impact the screening-test-outcomes? How can this happen? This chapter has investigated the research questions above and got insight into how the health literacy level influences the health outcomes and analyzes how the patient education can contribute to improving the screening outcomes too. An experiment involving participants with different health literacy level (high, medium, low, poor or inexistent) level had figured out that both the health literacy level combined with patient health education level can contribute to reducing the rate of false-positive and false-negative screening test-results and thus increase the sensitivity and specificity of screening tests.

1. BACKGROUND AND LITERATURE REVIEW Patient education can empower patient, increase his diseases awareness level, and thus contribute to adopting a healthy lifestyle to prevent disease as far as possible (Edoh, Zogbochi, Pawar, Hounsou, & Alahassa, 2017). Health education is a well-spread process but not sustainable. The existing methods are limited due to financial concerns, education level of the population, especially in developing countries, lack of adequate materials. Furthermore, this limitation is due to infrastructural and structural issues healthcare systems are facing worldwide, but developing countries bear a big burden of this issue.

1.1 Association Patient Health Education, Health Literacy, and Health Outcomes

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1.1.1 Health Literacy Health literacy is the ability to independently look for, find, process, and understand health-related information as well as to use healthcare services for taking appropriate health relevant decisions. Health literacy implies health education which in turn implies health-related information. The health education level is strongly dependent on the quality of the content of materials used, thus, health literacy also depends on health-related information that people receive. Literacy is also defined as a cognitive ability to read, write, understand written information, effectively communicate, and listen to someone. Thus, Health Literacy is the literacy applied to health (written) information and management (Roberts, 2015). Sørensen et al. (2012) have conducted a review of papers dealing with the term of health literacy in order to identify the definitions and conceptual framework of the term. They proposed, based on the results of the review, to integrate the medical and public health views of health literacy for a better understanding of the term.

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 Impact of Patient Health Education on the Screening for Disease Test-Outcomes

In Edoh et al., (2017), concrete examples of health literacy have been discussed. The case study has pointed out how the health literacy level can impact individual behavior. Furthermore, it has revealed that health literacy is not only to own knowledge about some medical conditions but also die attitude and individual behavior. This means that high health literacy provides more empowerment to the individual to involve himself in his health concerns. Additionally, the health literacy level can impact one’s health, well-being, quality of life, and, hence, increase diseases prevention. The individual is more attentive to a healthy lifestyle. The individual becomes more aware of the power of information and data as well as the power and impact of health education. Generally, people performing diet are known as people who collect data on the course of the diet for an analysis at the end of the diet. We can imagine that the health literacy can bring people to collect data o the health in general. This data and information can be provided to a physician in the scope of screening for diseases and, thus, represent a long-term data basis on which the medical doctor can base his medical examination.

1.1.2 Health Education Health education is defined as providing an individual with necessary information on given health conditions to make them get informed about health conditions or diseases, the diseases leading causes, and how to prevent developing the disease or to maintain his health. Health care systems, worldwide, regularly provide information brochures to the population to get educated. The population, despite, further looks for information on the Internet in diverse online health communities for self-education. The quality of the education depends on the source of the educational materials as well as the quality and the validity of the content of the materials.

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1.1.3 Patient- and Health-Outcomes Patient and health outcomes are variable concepts. The concept includes and reflects individual, healthcare professionals, family, or community state, behavior, or perception rather than expected even defined medical goals. The concept of outcome is measurable using measurement scales like Likert type scale to point out any variability in the patient state (Moorhead, Johnson, Maas, & Swanson, 2018). According to Koroukian et al., (2018), health outcomes are based on patient self-reported fair/poor health, 2-year self-rated worse health, and 2-year mortality. The outcome is then classified positive if the patient health status from good to excellent. A recent study (Traczynski & Udalova, 2018) has classified the health-outcomes reported by the patient and found an interesting association between the outcome level and the nurse practitioner independence. The outcomes have been classified using scales from 1 to 5 (1 = poor, 5 = excellent). Based on the literature review and the performed observation, the patient and health outcomes are the results including medical examinations and patient health status self-report. The patient self-report may confirm the medical examination outcomes and vice-versa. In the following section, the impacts of health literacy on patient and health outcomes will be discussed.

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 Impact of Patient Health Education on the Screening for Disease Test-Outcomes

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1.1.4 Impact of Health Literacy Level and Patient Health Education Level on Health Outcomes Patient Health Education (PHE) is defined as a process where healthcare professionals assist patients to acquire knowledge, build skill, and adopt favorable and appropriate attitudes towards medical conditions. Patient education implies providing an individual with adequate health and medical information. Today, people look by themselves for health-related information on the Internet in several online health communities. The great benefits of patient education are the empowerment that increases diseases awareness. It ensures that patients have detailed information on their health conditions and thus increases the patient understanding. An educated patient is featured with knowledge and ability to self-manage certain personal health conditions. If the patient has more insight into and understands their health condition, the patient is then more motivated to participate in the improvement of their health. Recent studies on the topic highlighted the association between the patient education level with the health outcomes. In Linder et al., (2018), the authors collected data from a Swedish esophageal cancer treatment center and investigated the effects of patient-education on the curative outcomes of the disease. They found out an association between the education level and the probability of curative outcomes. Zolezzi et al. (2018) have evaluated the lithium patient education and its impacts. The evaluation revealed an association between the lithium patient education and the safe use of lithium. This study shows the positive impacts of the patient education on the patient attitude towards diseases and how an individual with high health education can contribute to improving the health outcomes. According to the chapter 17 (Patient Education) from the book by Corcos and Przydacz, (2018), patient education is an important principle. The book chapter has investigated the education of the patient suffering from urinary tract dysfunction. It pointed out an important aspect of the patient education. In the special case of patients suffering from urinary tract dysfunction, the authors highlighted the role of the role of the clinician in the patient education. The clinician, involved in training the patient self-Catheterization, should be a well-trained and experienced clinician. Regarding the results of the literature review, the impact of patient education on the health outcomes is obvious. The curative probability increases when the patient education level also increases. A study conducted in 2010, Demarco and Nystrom, (2010), demonstrated the association between health literacy and patient education. The study recommended adjusting the patient education to their health literacy level. Hence, the readability of educational materials must be adapted to the literacy level of the patient. For example, a picture-based material would be appropriate and comfortable for a patient with very low (health) literacy. Though, how will this happen? Let us first look at the health literacy and its impacts on the health outcomes. A further difference between both patient education and health literacy is the disease awareness. Patient health education is linked to diseases awareness (Edoh et al., 2017). Though, the health literacy is not really related to diseases awareness (Devraj, Borrego, Vilay, Pailden, & Horowitz, 2018). Individuals with high health literacy have the cognitive capacity to manage and set their health. They further use this skill to access, understand, and analyze health information. Furthermore, they are able to easily access health care services than people with less health literacy (Berkman, Sheridan, Donahue, Halpern, & Crotty, 2011). Demarco and Nystrom, (2010) have pointed out that low health literacy contributes to inefficiently use of health care services. A study on chemotherapy education (Parker et al., 2018), revealed that the education does not apply the health literacy principles, and the authors claimed that developing the patient education grounded on the health literacy principles may present multiple 373

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 Impact of Patient Health Education on the Screening for Disease Test-Outcomes

benefits like overall comprehension of education and high adherence. Earlier studies have figured out similar results in different health fields; for example, Abiodun, Olu-Abiodun, Sotunsa, and Oluwole, (2014) for cervical cancer patients in Nigeria. Similar works were in done for heart failure (Evangelista et al., 2010). The literature review, including 30 papers, had figured out the relationship between the health literacy and the health outcome. Beyond this, many works have concluded that the education1 level influences the health literacy level which in turn impacts the health outcomes. Robert et al. in had investigated how the health literacy level influences the health outcomes. The study revealed that poor health literacy links to poor health behavior like smoking, poor diet, low physical activities, etc. Chesser et al. (2016) had conducted a systematic review on the health literacy among older/elderly adults. They found out that the theme is less investigated. Though, the review of the existing study’s outcomes revealed that the education affects the health among the elderly people. They further found out a link to age, income level, and race. An interesting point also pointed out in this study is an association between health literacy and physical as well cognitive health. Though, an important remains open; especially if high education automatically implies high health literacy. In Fabbri et al., (2018), authors have investigated the relationship between health literacy level, hospitalizations, and death. The investigation reveals an increased risk of hospitalization and death for low health literacy. This study once again has shown the impact of the health literacy on the health outcomes. It further investigated the risk factors leading to high rate of hospitalization and death among the people with low health literacy, for example, poor utilization of health care services. The authors call for evaluating how to address these risks and claim that the mechanism “whereby low health literacy leads to poor outcomes are only partially understood. “ In Saeed, Saleem, Naeem, Shahzadi, and Islam, (2018), authors have evaluated the impacts of health literacy on diabetes outcomes and found out that the poor blood glucose level control is associated with a low health literacy. The authors, therefore, recommended to launching patient education and training to improve the functional health literacy. As earlier described, the health literacy level, as well as patient, have shown promise to positively impact the health outcome. People with high literacy better follow the medical recommendation, medication, and can easily search for information about their health. They sufficiently collect information on their health and are more aware of their health condition. For example, people with high health literacy and suffering from diabetes regularly control their blood glucose level and are more aware of the disease. This behavior contributes to the high curability probability in this patient group. Through their diseases awareness level and regularly collected data on the health condition, the healthcare professionals are providing with valuable materials and have more insight into the status of the patient. Due to the diseases awareness, the patient knows when to visit the doctor and which information they need to collect prior to a medical visit. In contrary to people with high health literacy, people with low literacy cannot make a decision by themselves regarding the health conditions (Demarco & Nystrom, 2010). The following section will discuss diagnostics errors and associated factors. According to World Health Organization (2016), the health literacy level can impact diagnosis outcomes and in the worse case be linked to diagnostics errors. The digest (Table 1) presents a factor associated with diagnostics errors.

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 Impact of Patient Health Education on the Screening for Disease Test-Outcomes

Table 1. Digest (a) of Table 1. Factors that may contribute to diagnostic errors in primary care Factors Access to high-quality primary care

Possible Issues Contributing to Error Limited access due to lack of money, remoteness, illiteracy, travel constraints or a limited number of healthcare facilities.

Source: (World Health Organization, 2016)

1.1.5 Impacts of Health Literacy Level and Patient Health Education Level on Diagnostics Errors Rates Diagnostics error remains an important issue in the medicine. A medical doctor can be accurate in diagnosing a disease or health condition only if he already has significant experiences with the given disease symptoms. Jerome Groopman wrote the book entitled “What’s wrong with doctors” where he criticized the medical doctor’s attitudes regarding the decision taking process in the scope of a diseases diagnostics procedure. In early 2007, Richard Horton’s review the book of Groopman and highlighted following medical doctor’s behaviors during a diagnostics process and decision making. The doctors mostly like to rely on their own experiences only instead of on the available evidence and could, therefore, make wrong decisions. Horton wrote in his review:

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…. Patients might be stigmatized if they are thought to have a mental health problem or caricatured if they are judged to have engaged in self-harming behavior, such as alcoholism. This kind of mistake is called “attribution error.” “Availability error” occurs when a doctor makes a decision based on an experience that is at the forefront of his mind, but which bears little or no relation to the patient before him. For instance, a specialist in gastroenterology may only think of the gut when evaluating a woman with abdominal pain. He may not think of gynecological causes for her symptoms. The ready availability of his own specialized experience in his assessment of what is wrong with a patient can seriously bias a doctor’s judgment…. (Horton, 2007) Caroline Wellbery, a medical doctor, presents in his commentary on “Flaws in Clinical Reasoning: A Common Cause of Diagnostic Error” a case scenario where a doctor missed a diagnosis and asks himself how he can make his diagnoses more reliable. a striking point in his remarks was his statement saying that he made some lucky guesses (Wellbery, 2011). This statement clearly shows that clinical reasoning and doctor’s experiences with a given medical condition impact the diagnostics outcomes. Wellbery summarized in a table presented in Wellbery, (2011) the causes associated with diagnostics errors. interesting biases are presented in the table. Two of them retain particularly our attention: (i) Availability and (ii) Premature closure (see the digest below in Table 2). The World Health Organization (WHO) discusses in its report (World Health Organization, 2016) the factors associated with the diagnostics errors and summarized similar factor in the table (Table 1. Factors that may contribute to diagnostic errors in primary care). The second factor cited in the table (see digest below - Table 3 -) clearly underlines the preponderant role of the competence of the healthcare professionals. Recent works (Murcia-Robayo, Jouanisson, Beauchamp, & Diaw, 2018; Whalen, Maliszewski, Sheinfeld, Gardner, & Baptiste, 2018) have also pointed out the doctor’s clinical experience level and information technology as factors that influence the diagnostics outcomes.

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 Impact of Patient Health Education on the Screening for Disease Test-Outcomes

Table 2. Digest of Table 1 summarizing the diagnostics Biases Bias

Description

Example

Corrective Strategy

Availability

Referring to what comes to mind most easily

Making a diagnosis based on a previous patient with similar symptoms

Know baseline prevalence and statistical likelihoods of the condition diagnosed

Premature closure

Failing to seek additional information after reaching a diagnostic conclusion

Failing to note a second fracture after the first has been identified

Review the case, seek other opinions (e.g., radiology backup), and consult objective resources (e.g., an orthopedic review that might include mention of a common concomitant fracture)

Source: (Wellbery, 2011)

Table 3. Digest (b) of Table 1. Factors that may contribute to diagnostic errors in primary care Availability of healthcare professionals and specialists

Lack of sufficient, competent health care professionals, for example, due to lack of training, outward migration or a poor employment situation. Specialty expertise may not exist or may be limited in number or quality.

Source: (World Health Organization, 2016)

The literature review on the factors associated with the diagnostics errors had revealed the preponderant place of the clinical reasoning as the leading source of diagnostics errors. The study (Minue et al., 2014) on the factors associated with diagnostic errors in primary care has provided a novel framework to that makes possible to evaluate the impact of the clinical experience and situational factors like overwork, fatigue, and stress on the diagnostic process. This study has, thus, pointed out that doctor’s clinical experience can obviously influence the clinical reasoning, which in turn impacts the diagnostics outcomes.

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1.2 Association Health Education, Health Literacy, and Screening-Test-Outcomes The literature review has clearly shown the relation between the health literacy levels and health outcomes. It also demonstrates the higher the health literacy level, the higher the patient involvement in their health concerns. The study (Oldach & Katz, 2014), on the impact of patient’s health literacy on cancer-screening-test-outcomes, have concluded that the patient’s health literacy is potentially a contributing factor on the outcomes. This conclusion does not clearly establish the relationship between the health literacy level and the cancer screening-test-outcomes. The reason for this is following: the authors evaluated 10 articles including 14 comparisons. However, only one article has definitively found a significant association between the terms. All other articles fail to definitively establish the relationship. In Sentell, Tsoh, Davis, Davis, and Braun, (2015), the authors investigated the association between the low health literacy and the up-to-date breast and colorectal cancer screening. The study revealed that the low health literacy combined with limited English proficiency have negatively influenced an up-to-date screening. Both studies did not clearly investigate the impact of the health level on the screening test-outcomes. The authors of the first study claim that it was not possible to definitively establish the relationship health between literacy and cancer screening.

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 Impact of Patient Health Education on the Screening for Disease Test-Outcomes

To our best knowledge, the topic is less investigated since only a few kinds of literature were found dealing with the association between the health literacy level and the screening test-outcomes. Most of the references have only investigated the impact of the health literacy on the cancer screening test-outcomes. We are not able to find articles on how the health literacy level influences the rate of false-positive and false-negative screening outcomes. Furthermore, no article has dealt with the impact of the health literacy level on the sensitivity and specificity of screening tests. No study has especially investigated if the health literacy level can influence a screening test sensitivity and specificity and how this is made. Furthermore, the following questions seem to not be answered by any studies: 1. Does the health literacy impact the rate of false-positive than false-negatives and vice versa? 2. If the questions above are answered by YES, then how does the health literacy impact the screening outcome’s quality? Most reviewed articles have mostly focused their works on the involvement of the individual in the decision-making process and their satisfaction, but not how the acquired knowledge, through the health literacy and health education, helps the individual to influences significant points and steps of the screening procedure like qualitative and quantitative long-term information provision. Since we did conduct an exhaustive literature review, it possible that works are conducted on the topic somewhere, but we found no paper presenting work on the topic. Our literature dataset consisted of papers from PubMed, Scopus, dlpb, etc.

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1.2.1 What is Screening Diseases? Screening for diseases is defined as medical examination provided to the population (mass screening) or individual with the main objective of early detection, prevent, predict, and/or cure certain diseases. Cf. the chapter 1 for more insight into the term regarding its definition, subcategories, and process. The conventional screening is patient-centered, it means that a part of information and data used in the scope of the screening come from the patient and/or his relatives. The data and information are being collected through a patient-physician discussion or interview. In Australian Institute of Primary Care, (2008) the authors have defined the screening for diseases as: Screening involves the systematic use of a test or investigatory tool to detect individuals at risk of developing a specific disease that is amenable to prevention or treatment. It is a population-based strategy to identify specific conditions in targeted groups before any symptoms appear and are undertaken in accordance with community-based screening protocols. Screening can also be an effective community engagement strategy that can lead to involvement in other health promotion activities for targeted population groups. The central point, in screening for diseases, is the early detection or prediction of diseases before the symptoms appear. This point differs the screening for diseases from diseases diagnostics, which is essentially on analyzing the symptoms of the disease. An early study (Gunn et al., 2008) conducted on adults subjects with depressive symptoms revealed a morbidity (co-existence of multiple health conditions) in these subject’s group. This study raises the question if the depressive symptoms can be classified as a factor and sign of a risk of being developing a disease? Tendentially, the answer could be yes, since the study of concern was longitudinal and involved 789 female participants (71% of the cohort, statistically

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 Impact of Patient Health Education on the Screening for Disease Test-Outcomes

significant) respecting the gender criteria, and englobing diverse categories of women (single, married, etc.). The study lasted 3 years (from 2005 to 2008) (Gunn et al., 2008). The results of screening for diseases relied on analyzing information/data coming from two different sources (i) patient-physician interviews and (ii) medical examination or tests. Data analysis is then performed using exploratory data analysis methodology to find patterns and relationships in data and, thus, detect if the prevalence of developing the given disease is high or not. Figure 1 illustrates the screening process as well as the data sources.

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Figure 1. Screening data: sources and process

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 Impact of Patient Health Education on the Screening for Disease Test-Outcomes

1.3 Health Educational Materials Health literacy and diagnostics error are discussed in the previous subsections. The two previous subsections have shown the link between both health literacy and health outcomes. Since education implies educational materials, it is judicious to get insight into the materials involved in patient education. Using patient educational materials from online health communities for building and/or improving health literacy among the population is the main objective as well as the context of the present study. The main hypothesis is defined as follows: Hypothesis: High health literacy could be associated with screening-test-outcomes in impacting the test-accuracy, sensitivity, and specificity since health literacy is known as positively impacting the health outcomes. It is, therefore, necessary to briefly define the online health communities and to evaluate the impact on health outcomes (diagnostics outcomes).

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1.3.1 Online Health Communities as Educational Materials Source Online health communities present the source of the patient educational materials in the context of the present study. In general, there exist many medical materials sources like a brochure, publications on the Internet, WHO Site, etc. Though, this study focuses on materials from online communities only. In the age of information and communication, patients are more active on the Internet in seeking for information on diseases, thus, various online health communities are creating or being created day after day on the Internet. “Patient like me” (https://www.patientslikeme.com/) is an example of professional health communities on the Internet with high impact factor. Table 4 summarizes a set of online health communities. Studies conducted on the impacts of online communities on diseases diagnostics have shown numerous benefits the patient can take from regularly being “visiting” online communities. In Juusola, Quisel, Foschini, and Ladapo (2016), the authors found out that certain online communities mostly help for getting definitive diagnostics especially for those who are lacking one. In such health online communities, patients can meet diverse patients suffering from similar health condition like themselves as well as medical personnel who will provide a diagnosis. These communities have the advantages that all members of the communities can read the responses to a question and, thus, can react if they think that the response is weak, insufficient, false. Though these communities present the risk of providing not valid information to the patient and, thus, to hazard the patient. This rise the question of the validity of the material and information available on the online communication and, hence, the need of providing policies for ensuring high quality for the documents and information circulating on the Internet regarding health concerns. The quality of the information is important. To our best knowledge, there exists no policy as well as a quality metric to measure these documents and information available in the online communities. In Nath, Huh, Adupa, and Jonnalagadda, (2016), the authors have analyzed the content of several documents available on different online communities and found out that the quality of these documents relies more on the trust to and reputation of the publisher than on the quality. The more the site is related to the

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 Impact of Patient Health Education on the Screening for Disease Test-Outcomes

governmental or renowned institution, the more the consumer trust the content. In comparison, social websites are less trusted. The authors wrote: The .gov and .edu websites are not found to have accreditations in general, but they might be trusted when associated with institutions with solid reputations. None of the social media websites contained trust codes because they do not have an obligation to validate their health information quality; their primary focus is not necessarily sharing health information. (Nath et al., 2016) and concluded: To further develop automated information quality detection, we need to rethink what is high-quality information. (Nath et al., 2016) Despite the quality issues facing the documents available on the Internet, intended to serve as educational materials, online health communities positively impact the quality of life (QoL). In Rana, Wahlin, Lundborg, and Kabir, (2008), the authors have shown how the health education can impact the QoL. A case study among elderly people shown increasement of the QoL among the elderly people who have adhered to the educational intervention. There exist communities that provide high-quality documents contents like Netforum of Philips. Is that a kind of policy to be used to high the quality of the document contents and, thus, guarantee patient safety as well as positive impact screening outcomes? In Hajli, Sims, Featherman, and Love, (2015), the authors conducted a comprehensive study about the credibility of information contents in online communities, but not exhaustive since they analyzed 156 posts. The study revealed that information available in online health communities are credible. Though, this study fails to point out if credible information also a valid on is. Obviously, information is of a certain quality, though, they contribute to patient empowerment so that patient can involve in his own health concerns. In Australian Institute of Primary Care, (2008) a report carried out by Australian Institute of Primary Care, health information objectives are defined as:

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Health information interventions aim to increase people’s capacity to make informed choices about their health and wellbeing. This includes providing opportunities for preventive care, by improving their understanding about the causes of health and illness, the services and support available to help maintain or improve health, and personal responsibility for actions affecting their health. The report, further, presents a policy about how to measure the factor impact of health information. Overall, health information supported education shows promises to impact patient health, increase his understanding of the disease and their causes. Since screening for diseases (see definition in the chapter entitled: Internet of Things Enabled Pre-Screening for Diseases) is partially based on patient-centered information, understanding diseases and its causes consists already a set of data the patient owns and can provide the medical doctor with that if needed. This chapter aims at investigating rather the impacts of appropriate health education on screening outcomes than investigating the quality of the document contents in the online communities. It furthers, makes policies to the improvement of the process and outcomes of screening for diseases. The policies presented in this chapters rely on the use of the modern information technology and the research results. 380

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 Impact of Patient Health Education on the Screening for Disease Test-Outcomes

Beyond the issues regarding the quality of the materials available in such online health communities, the readability of those materials poses an additional challenge to be tackled. In early 2017, Betschart et al. conducted a readability assessment of patient education materials written in German. Three European countries have the German language in common: Germany, Swiss, and Austrian. The assessment englobes materials published by the associations of urology from all these three countries and materials issued by the European Association of Urology (EAU). This study (Betschart, Zumstein, Ali, Schmid, & Abt, 2018) found out that materials issued by EAU are easiest to read and, thus, shows that the readability of patient educational materials is also a challenge to be considered. Xie et al. had also assessed online educational materials intended for the education on “velopharyngeal insufficiency” (VPI) and “velopharyngeal dysfunction” (VPD) and found out that the published VPI materials are written in a complex language for the common reader (Xie, Wang, & Chinnadurai, 2018). This study highlighted an important issue regarding the adaptability of online materials to the reader literacy level. Another study (Ghodasra et al., 2018) came to the same conclusion and claimed that additionally to the poor/low quality of the online documents, the literacy of the reader is overestimated. It is, however, something difficult for some experts to write down high specific documents in an easier language since they tend to use filed related terminologies that make the document or the language complex. Though, how could the modern technology, like machine learning (ML) and artificial intelligence (AI) help to solve this issue? Today, most online shops are utilizing the machine learning capability to learning from the user preferences and thus adapt accordingly their offers and advertisement to the users. Fiumara et al. have conducted a work (Fiumara, Celesti, Galletta, Carnevale, & Villari, 2018) on similar them and proposed to use AI and ML to automatically analyze patients “posts” available on the diverse online health communities. They presented and discussed the architecture of the proposed system. The system has shown promise to help to improve the quality of the contents of health-related materials on the Internet. The architecture involves medical doctors who can intervene and improve the posts of concern. Table 4. Sample Online Health Communities

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Community

Description

URLs

SparkPeople

Provides information about dietetics and brings people having body weight issues in common together.

http://sparkpeople.com/

Everyday Health

Every health platform is health community providing his members with information, advises, health materials on various health topics like living healthy, lose weight that contribute to preventing diabetes, for example.

https://www. everydayhealth.com/

Mayo Clinic Connect

This platform is like every Health community platforms. The patient is offered the possibility to follow the discussion and get alerted once new entries about the discussion are available.

https://connect. mayoclinic.org/

Health.MSN.com

This platform is not a common community as the other ones, but it provides exhaustive health information.

https://www.msn.com/ en-us/health

WebMD Exchange

This community offers a huge on the online discussion in diverse forums. It, further, interesting material on numerous health topics like cancer, diabetes, etc.

https://exchanges. webmd.com/default.htm

Netforum

This community is owned by Philips for healthcare professionals. It serves to share cases studies outcomes, experiences, etc. The quality of the documents available here is very high.

http://netforum. healthcare.philips.com/ global

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 Impact of Patient Health Education on the Screening for Disease Test-Outcomes

1.4 Context Analphabet people are excluded from the present study. An ambitious project has to be initiated to define the “health literacy” for illiterates in replacing the term “read” with “listing to”, “write” with “clearly and audibly speak”. Educational materials should mostly audio and video based. The present study is focusing patient health education supporting by educational materials from the diverse online health communities and from the Internet.

1.5 Chapter Structure The remainder of the chapter includes 5 sections whereas section 2 presents the problems and analysis followed by the research methodology in section 3. Section 4 presents the results of the study. The chapter is concluded in section 5 where the results are further discussed. Section 6 outlines the future works.

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2. PROBLEM STATEMENT AND ANALYSIS This section will present and analyze the main problems facing the screening for diseases. Certain groups of individuals are considered to not take any benefits from screening for diseases, based on diverse data analysis. For example in Maxim, Niebo, and Utell, (2014), the Medicare Evidence Development and Coverage Advisory Committee (MEDCAC) recommends stopping screening women aged from 40 to 49 years, because the data analysis does not show any evidence-based benefits for the group of concern. An early study (Thombs et al., 2008) has evaluated the benefit of screening the depression in a patient with cardiovascular disease as recommended by several practice guidelines. It concluded that the treatment of depression in such patient does not improve the cardiac outcomes. The study has demonstrated that patients with cardiovascular diseases do not take any benefits from the depression screening. The question here is why the practice guidelines recommend the depression screening for such patient despite the lack of improvement of the cardiac outcomes? In addition to the controversies above, the screening is facing a huge of issues like high rates of falsepositive and false-negative test-outcomes. The number of false-positive and false-negative outcomes determine the sensitivity and specificity of a screening test. A False-Negative screening test outcome indicates that an individual, who basically has the pathology for which they are screened for, is identified as not having or not presenting any sign to develop or not at risk to contract the diseases. This type of outcomes is life threating for the individual and facing and can end up in an eventual risk of morbidity and mortality. A False-Positive screening test outcome is, in contrary to a false-negative test-outcome, an individual is unfortunately declared having or is at risk to develop a given disease according to the screening test outcomes. Hence, the individual is exposed to unnecessary and costly medical examinations. The sensitivity of a screening test = the ratio of true-negative to {true-negative + false positive} The specificity of a screening test = the ratio of true-positive to {true-positive + false-positive} The Specificity and sensitivity are interdependent and are used to qualify the screening test outcomes.

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 Impact of Patient Health Education on the Screening for Disease Test-Outcomes

The literature review found out a high number of works claiming the high rates of false-negative and false-positive test-outcomes. The set of these articles includes studies like Renshaw and Gould, (2013), Maxim et al., (2014), or recent works like Yang, Zhang, Yao, and Fan, (2018) and Di and Li, (2018). All available studies concluded the same results and pointed also out the same controversies regarding the benefit of the screening procedures for certain groups of individuals. The reasons why the screening is facing those controversies and why the rate of false outcomes is so high is diverse. One reason is the lack of long-term data. The data acquisition relies on 1:1 interview (patient: medical doctor) and on the patient medical records are available. The patient health record and patient-centric data are quasiinexistent. Thus, the data on which the screening is relying is insufficient and incomplete. The patient-centered data (not patient-centric data2) is often subjective. Furthermore, the patient can omit some important details if their knowledge regarding health concerns is low. The literature review has highlighted the association between patient health education, health literacy, and health outcomes. It is also demonstrated that the health literacy level influences the patient self-management ability, capacity to search for information, understanding of health condition level (depending on literacy level), diseases awareness, and insight into health concerns. The main problem to tackle is how to improve patient’s medical knowledge so that the patient can collect screening significant and sufficient data to build a long-term data pool to support the screening procedure. This study aims to verify the unique hypothesis: Hypothesis: Since the healthy literacy positively impacts the health outcomes, it will obviously also positively impact the screening test outcomes.

3. METHODOLOGY This section presents the research methodology and data. This study is essentially based on literature reviews and a few interviews conducted to control the literature reviews results.

3.1 Sampling Methods and Research Approaches

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•

Snowball Sampling Method: The test period was relatively short. Therefore, the recruitment of patient was challenging. The participants were, therefore, recruited using the snowball approach the first recruited participants were requested to recruit further participants according to the defined criteria.

The literature pool was also build using the snowball technique where recently cited references in an article were added to the pool. The operation was repeated for each article added to the pool. The pool was in afterward filtered. Only the articles that handle the topic of the present study were retained. Qualitative Research Approach: The qualitative approach was implemented to measure the quality of the provided answers. Following are measured: 1. The Quality of the Patient’s Answers 383

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 Impact of Patient Health Education on the Screening for Disease Test-Outcomes

2. 3. 4. 5.

The Patient’s Quality of Life The Patient’s Diseases Awareness Level The Quality of the Provided Long-term Data4 The Accuracy Level of the Screening Test-Outcomes

3.2 Literature Search and Sampling A comprehensive literature review was conducted following the snowball approach. Additionally, posts available in some online health communities were analyzed. Literature dealing with topics like: 1. 2. 3. 4. 5.

Impact of health education on individual health and wellbeing Quality and validity of education material available in online (health) communities Impact of health literacy on diseases prevention, lifestyle, quality of life Health education and screening for diseases Health literacy and screening for diseases

The objective of analyzing posts available in online health communities was to study the impact on the quality of life of communities through the content of their posts, structural quality of posts and the plausibility level of the given answers. Results of interviews and investigations conducted in were considered in Edoh et al., (2017) the scope of investigating the impact of health education on the level of health literacy. The main objective of the study is to find out to what extent health education can contribute to improving the accuracy of outcomes of conventional screening for diseases.

3.3 Cohort Sampling The study involved 45 participants divided into three (03) categories and screened for cardiovascular diseases and malaria:

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1. Participants with high health literacy level (Test Cohort): Group 1 2. Participants with low health literacy level (Control Cohort): Group 2 3. Participants without health literacy level (Control Cohort): Group 3 The test foresaw following control strategy (a) test involving group 1 aims at investigating the impact of health literacy on the accuracy and quality of screening for diseases. A control test involved the group 2 to verify if the accuracy depends on the literacy level. The group 3 aims at confirming the results obtained.

3.4 Evaluation of the Impact of Health Literacy on the Screening Test-Outcomes To investigate the impaction of the health education on the screening for diseases test-outcomes, people with diverse health literacy level (high, medium, and low/poor) as well as healthcare professionals experienced with regular screening people were interviewed.

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 Impact of Patient Health Education on the Screening for Disease Test-Outcomes

The impact of health literacy level on the quality and accuracy of the outcomes of screening for diseases was investigated since it determines the health education which in turn implies the diseases awareness and medical knowledge. Healthcare professionals were asked to evaluate the quality of the information collected in the scope of screening in a patient-physician interview in three different cohorts. One cohort consists of participants with high, medium, and low health literacy level. People with low/poor literacy are illiterate. Beyond this, the involved healthcare professionals were further asked to evaluate the impact of thus collected data on the screening test-outcomes. For this purpose, the cohort consisted of health semiliterate participants (medium health literacy), was selected as a control-cohort to evaluate the research hypothesis stating that health literacy can increase the accuracy of screening outcomes. Health Literacy Level Classification: As classified in (Edoh et al., 2017) using the Medical Term Recognition Test (METER) to measure the literacy level, the health literacy level is measured using the METER. The classification is as follows: 1. Low Literacy (0 - 15 words) 2. Marginal Literacy (16 - 25 words) 3. Functional Literacy (26 - 32 words) The metrics used in the study can be mapped as shown in Table 5. Table 5. ­ Low health literacy Medium health literacy

Low Literacy corresponds

High health literacy

Marginal Literacy Functional Literacy

3.5 Data Collection and Analysis

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Questionnaires The medical doctors collect independently from the present study all needed data as the national screening requests using the national standard questionnaire. The study questionnaire was intended for the healthcare professionals. Five structured interview questions (see Table 6) were sent to the involved healthcare professionals.

Data Gathering Following data have been collected for the study purpose: 1. Quality of the participant’s answer 2. Diseases awareness

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 Impact of Patient Health Education on the Screening for Disease Test-Outcomes

3. 4. 5. 6. 7.

Lifestyle and quality of life Long-term data/information provided by the participant The accuracy level of the outcomes before any medical tests Outcomes of eventual medical tests Medical tests outcomes/data-drive screening outcomes Ratio

Table 6. Questionnaire Pos.

Number of Answers

Question

Excellent

1

What is the quality of the patient’s answers?

2

What is the participant’s diseases awareness level?

3

What is the quality of Life of the patient?

4

Could the patient provide useful long-term data?

5

What is the accuracy level of the outcomes?

Very Good

Good

Satisfactory

Low/Poor

Each collected information is scored on a scalar from 1 to 5 where 5 is the best score. All scores were added together and evaluate according to following indicators defined in Table 7. A score between 20 and 29 is classified as a good key indicator if, additionally to the score, the rate outcomes test/data-driven outcomes ≥ 3 and the data-driven outcomes accuracy > 3 otherwise it is classified as “satisfactory” Table 7. Scores and Indicators

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Scores

Key Indicators

Description

35

Excellent

Fully impact the screening outcomes and ensure high accuracy

30 - 34

Very good

Rate outcomes test/data-driven outcomes ≥ 3 Impact the screening outcomes and ensure very good accuracy

30 – 34

Good

Rate outcomes test/data-driven outcomes < 3 Impact the screening outcomes and ensure good accuracy

20 - 29

Good

Rate outcomes test/data-driven outcomes ≥ 3 Data-driven outcomes accuracy > 3 Lightly impact the screening outcomes and ensure less accuracy

20 - 29

Satisfactory

Rate outcomes test/data-driven outcomes < 3 Data-driven outcomes accuracy ≤ 3 Lightly impact the screening outcomes with sporadic accuracy

< 20

Bad/worst

Do not impact the screening outcomes, No accuracy

Data Analysis Microsoft Excel was used for the data analysis. We first built an AVG of the scores each reaches. Before building the AVG, the different scores a participant obtains were compared with each other. In the case

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 Impact of Patient Health Education on the Screening for Disease Test-Outcomes

of strong discrepancy between the scores of the same participant, the scores were classified biased and were not included in the analysis.

3.6 Evaluation and Measurement Metrics To evaluate the validity and reliability of investigated data, each participant was screened by five different medical doctors. The medical doctors did not know about the health literacy of each examined participant, so we ensure to prevent any subjectivity in the data evaluation and analysis.

Data Validity and Reliability Validity and reliability are two metrics to assess the quality of the measurement methods. They enable to assess for consistency of a given number of measurement and validity of measured data. For validity and reliability purposes, data is gathered 3 times in same conditions and compared with each other.

Error Rate The participants were meticulously sorted regarding their background, literacy level diseases awareness and health education level. All collected data and information were for plausibility checked. The data and information were double-stored (audio, video, and write) and compared in afterward. This procedure was used to detect any biases in the data provided by medical doctors to us. The rate of biases and errors were extremely low thus insignificant.

4. EXPERIMENT AND RESULTS 4.1 Test Period The experiment lasted eight (08) weeks whereas 4 weeks were to recruitment and preparation issues. Information about participants background was collected. The relevant data is defined.

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4.2 Test Results To analyze and point out to what extent health literacy can impact screening outcomes, gathered data were pre-processed. Table 8 indicates which score how many people in each cohort have reached. Participants in the cohort with high literacy level obtained very good and positive results. Participants in the cohort with low literacy level mostly scored less than 30 while participants from the last cohort obtained the worst score. After recording the scores, a further analysis was performed to understand the score differential between the participant in each group.

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 Impact of Patient Health Education on the Screening for Disease Test-Outcomes

G1 - High Health Literacy: 3 people have attained the maximal score. The analysis revealed that these people have a high disease awareness level and continuously get educated on health concerns. They are active in several online health communities and regularly visit the doctors. 10 people obtained a score between 30 and 34. In this subgroup, the diseases awareness level is medium, and people are moderately health educated. They are less active than people in the subgroup whit high score. 2 people obtain a score between 20 and 29. The disease awareness low despite the high health literacy. They are not active in any online communities. G2 - Medium to Low Health Literacy: 11 people in this group present similar characteristics as the two people with the lowest score in the G1. The analysis revealed that in contrary to people with high literacy level, medium to low diseases awareness level in this subgroup is associated with the low health literacy. People in this subgroup claim facing difficulties in searching for information and understanding the content. The lowest subgroup obtained a score less than 20. These people were assessed 3 times for validity and reliability purpose. The results remain the same. This subgroup shows a poor diseases awareness. G3 - Low to Poor Health Literacy: Most people (12 persons) in this group obtain a score less than 20. They claim to face a language barrier since the educational materials are written in the official language (French and English). They request audio materials for the education and the possibility to improve the literacy level. Scores obtained in each indicator and measurement category were processed for the analysis purposes. It does matter to investigate which factor impact the average scores obtained by each cohort. For this reason, Table 9 summarizes the diverse factor-related outcomes. This table presents only the positive outcomes in percentage. Table 8. Structure of Cumulative Scores obtained by the involved Participants

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Scores

Health Literacy Level High

Low

Poor

35

3

0

0

30 - 34

10

2

0

20 - 29

2

11

3

< 20

0

2

12

4.2.1 Quality of the Participant’s Answers Answers provided by the participants from the cohort with high literacy level were structured, precise. The analysis revealed that this (well-structured and precise answers) is associated with the education

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 Impact of Patient Health Education on the Screening for Disease Test-Outcomes

Table 9. Structure of the diverse positive Screening Outcomes in each Indicator Category Categories of the Key Indicators

Percentage of Positive Outcomes G1

G2

G3

Quality of answers to the interviews questions

80%

33%

03%

Level of the Diseases awareness

90%

45%

00%

Lifestyle and quality of life

100%

25%

11%

Long-term data/information provided

60%

02%

00%

Outcomes accuracy level

95%

65%

40%

Outcomes of medical tests

100%

100%

100%

Medical tests outcomes/data-drive screening outcomes ratio

95%

65%

40%

G1 = Participants with high health literacy level G2 = Participants with low health literacy level G3 = Participants without health literacy level

level of the interviewees, but not with health literacy. As presented in Table 8 there are people with high literacy level who obtain a low score. Furthermore, there are people with medium health literacy level who have obtained better score than people with high health literacy. People with high diseases awareness gave detailed answers independently of their health literacy level. The analysis of interview questions revealed a correlation between the knowledge level and the quality of provided answers. The higher a participant’s knowledge in the domain, the more precise and detailed is the answer. The participant’s knowledge is related to the level of the diseases awareness. The knowledge level is not associated with the literacy level. The study thus figures out that the health literacy level is a knowledge acquisition facilitator but does not automatically imply a knowledge possession. The correlation between the education level and the health literacy and patient health education level was not investigated. The answer to this question is not obvious since people with low education level can become autodidact and thus will acquire the ability to read, write, and understand complex things. The point will be investigated in a forthcoming article.

4.2.2 Diseases Awareness It can be noticed that disease awareness relies on health education. In turn, it seems that diseases awareness level can impact the quality of the answer during a screening interview.

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4.2.3 Lifestyle and Quality of Life The Quality of Life (QoL) among the cohort with high literacy level combined with high health education and knowledge is higher than the QoL in the other cohorts or subgroups. The high health educated participants are more aware of the benefits one can take from having a healthy lifestyle. Furthermore, they know what to do to have a healthy lifestyle while the other cohort members lack this knowledge. The health literacy level combined with the health and medical knowledge level seem to impact the QoL. “seem” is used because the duration of the present study does not allow us to make a definitive

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 Impact of Patient Health Education on the Screening for Disease Test-Outcomes

statement on the relation between QoL and health literacy associated with health and medical knowledge. A longitudinal study over several years observing various cohorts is needed for the definitive assertion.

4.2.4 Long-Term Data and Information Provided by the Participants A deep analysis of the screening protocols has revealed that mostly provided longer-term data came from participants in the cohort with high literacy level. More than 50% of these participants were aware of the importance of long-term data in the screening and which data are needed for successful screening. Based on this knowledge, they collect by themselves relevant data. Since lack of long-term data is a crucial issue facing the screening evaluation and, thus, being impacting the accuracy of the outcomes, providing these data will definitive positive impact the accuracy screening outcomes. We noticed a significant difference in the degree of details in which the collected long-term data is described. Data provided by people with high diseases awareness is more detailed and contains more screening relevant information. The literacy level plays a significant role here too, but it must be combined with the diseases awareness which implies patient health education.

4.2.5 Accuracy Level of the Test-Outcomes The level of the outcomes accuracy in screening the cohort with high literacy level is higher than the others. Since long-term information is a matter factor that can significantly impact the accuracy. It is worth noticing that the diseases awareness and patient health education are the important factors that have influenced the outcomes. This study reveals that indirectly the literacy level can impact the quality and accuracy of screening outcomes since it supports or enables the patient health education.

4.2.6 Outcomes of Eventual Medical Tests This factor is independent of literacy level one has. Though, this factor is constant and is not impacted by the literacy level. It is but somehow a control test to verify the data-driven evaluation outcomes.

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4.2.7 Ratio Medical Test-Outcomes/Data Driven Screening Outcomes The quality and accuracy of the outcome can be measured by the ratio medical test outcome / evaluation outcomes. The evaluation can be considered accurate and high quality if the ratio strongly approaches one (01). The ratio of the cohort with high literacy level is the highest and approaches 1 (0,95). The probability that health education positively the quality and accuracy of screening outcomes is high and thus needs to be deeply investigated in a longitudinal study.

4.2.8 Research Findings The main findings of this study are: 1. Health literacy is a pre-requisite for patient health education. The educational materials need to be adapted to the health literacy level of the individual. Though, people with poor (health) literacy 390

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 Impact of Patient Health Education on the Screening for Disease Test-Outcomes

can be health education if the paradigm is changed, so that more video and audio materials in the native tongue is offered 2. Patient health education underlines the diseases awareness. High Health literacy doe does not automatically imply high diseases awareness level 3. Health literacy, patient health education, and diseases awareness combined in suited proportion can positively influence the screening test-outcomes.

4.3 Resulting Concept Many works have been done regarding the health literacy level measurement, for ex. Ahmed, Shaikh, Soomro, Qazi, and Soomro, (2018); Merker et al., (2018) and the influences of health literacy on the health outcomes. In a previous study (Edoh et al., 2017) we showed how to assess the diseases awareness level in an individual. Based on previous works done by several authors and the findings of the present study, we propose a system to improve the health literacy, patient education, and diseases awareness. The main objectives are to decrease the rate of false-positive and false-negative screening test-outcomes and thus increase the test sensitivity and specificity. 1. Regularly assess the health literacy (HL) of the individuals. This work proposes an AI and ML enabled and questionnaire-based mobile application to verify the individual ability to read, write, and understand a text and thus classify the literacy level. The system will be featured with a self-decision-making ability. Based on the test score propose to the patient a training to improve their literacy. 2. Training the HL ability of the individual in asking them to regularly perform some exercises like read, write, and understand complex tests. An individual with a minimum of literacy can be trained to increase their level. A training system is proposed to help the patient through this process. A mobile application using the AI and ML technologies will guide the patient, give them exercises and help them to perform their read, write and understanding ability.

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3. Improving the readability and adapted it to the educational materials using AI and ML The readability of educational materials available on the Internet or in various healthcare units remains challenging. Several studies (see literature review) have pointed out this issue. To tackle this issue, some lexica are needed. These lexica will support the readability in rewording complex phrases used in an educational material. Beyond rewording the educational using AI and ML technologies, it important to create adapt appropriate materials to the illiterate abilities using pictures for the illustration, audio, or videos

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 Impact of Patient Health Education on the Screening for Disease Test-Outcomes

5. CONCLUSION It is well known that health literacy impacts health outcomes. The literature review conducted has shown the association between health literacy and health outcomes. Furthermore, the study demonstrates that the health literacy alone is not sufficient to impact health outcomes. It is obvious that health literacy does not imply the patient health education and thus the diseases awareness level. The health literacy supports the patient health education. It is the cornerstone of the patient health education. The health literacy just influences the readability and understanding of educational materials. This means that patient with low health literacy level can also be health educated if the educational materials are adapted to the cognitive capability of the patient. Based on the results of the conducted experiment and the data analysis, this study demonstrates that the patient health education level can positively impact the screening test-outcomes. Though it needs to be supported by an adequate health literacy level.

6. FUTURE WORKS The health literacy is known as a pre-requisite for the patient health education. This means individuals with poor or no (health) literacy level are excluded from any patient health education program and, hence, cannot any diseases awareness. Regarding the number of people with poor or no (health) literacy in the developing world. a paradigm change and re-definition of the said terms are therefore needed. The next challenges to tackle are (i) enabling patient health education for the said people and (ii) redefining or extending the term of “health literacy” and hence the measurement paradigm. Our future works would focus on implementing AI and ML-based systems to help illiterates to take part in any patient health education and also attain high health education level and thus appropriate diseases awareness. Beyond this, it is a need to work on improving the readability and quality of those educational information materials available on the diverse online health communities.

REFERENCES

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Berkman, N. D., Sheridan, S. L., Donahue, K. E., Halpern, D. J., & Crotty, K. (2011). Low health literacy and health outcomes: An updated systematic review. Annals of Internal Medicine, 155(2), 97–107. doi:10.7326/0003-4819-155-2-201107190-00005 PMID:21768583 Betschart, P., Zumstein, V., Ali, O. H., Schmid, H. P., & Abt, D. (2018). Readability assessment of patient education material published by German-speaking associations of urology. Urologia Internationalis, 100(1), 79–84. doi:10.1159/000480095 PMID:29151111 Chesser, A. K., Keene Woods, N., Smothers, K., & Rogers, N. (2016). Health Literacy and Older Adults. Gerontology and Geriatric Medicine, 2, 233372141663049. doi:10.1177/2333721416630492 PMID:28138488 Corcos, J., & Przydacz, M. (2018). Patient education. In Consultation in Neurourology: A Practical Evidence-Based Guide (Vol. 17, pp. 285–297). Springer International Publishing AG. Demarco, J., & Nystrom, M. (2010). The importance of health literacy in patient education. Journal of Consumer Health on the Internet, 14(3), 294–301. doi:10.1080/15398285.2010.502021 Devraj, R., Borrego, M. E., Vilay, A. M., Pailden, J., & Horowitz, B. (2018). Awareness, self-management behaviors, health literacy and kidney function relationships in specialty practice. World Journal of Nephrology, 7(1), 41–50. doi:10.5527/wjn.v7.i1.41 PMID:29359119 Di, L., & Li, Y. (2018). The risk factor of false-negative and false-positive for T-SPOT.TB in active tuberculosis. Journal of Clinical Laboratory Analysis, 32(2), e22273. doi:10.1002/jcla.22273 PMID:28594104 Edoh, T., Zogbochi, V., Pawar, P., Hounsou, J. T., & Alahassa, B. R. (2017). Impact of the Internet on diseases awareness and patient empowerment — A study in Benin (West Africa). In 2017 Fourth International Conference on Advances in Biomedical Engineering (ICABME) (pp. 1–4). IEEE. 10.1109/ ICABME.2017.8167543 Evangelista, L. S., Rasmusson, K. D., Laramee, A. S., Barr, J., Ammon, S. E., Dunbar, S., ... Yancy, C. W. (2010). Health Literacy and the Patient With Heart Failure-Implications for Patient Care and Research: A Consensus Statement of the Heart Failure Society of America. Journal of Cardiac Failure, 16(1), 9–16. doi:10.1016/j.cardfail.2009.10.026 PMID:20123313

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Gunn, J., Gilchrist, G., Chondros, P., Ramp, M., Hegarty, K., Blashki, G., ... Herrman, H. (2008). Who is identified when screening for depression in general practice? Findings from the Diagnosis, Management and Outcomes of Depressive Symptoms Longitudinal (diamond) Study. The Medical Journal of Australia, 188(12), S119–S125. PMID:18558911 Hajli, M. N., Sims, J., Featherman, M., & Love, P. E. D. (2015). Credibility of information in online communities. Journal of Strategic Marketing, 23(3), 238–253. doi:10.1080/0965254X.2014.920904 Horton, R. (2007). What ’ s Wrong with Doctors. The New York Review of Books, 54(13), 66. Retrieved from http://www.nybooks.com/articles/2007/05/31/whats-wrong-with-doctors/ Juusola, J. L., Quisel, T. R., Foschini, L., & Ladapo, J. A. (2016). The impact of an online crowdsourcing diagnostic tool on health care utilization: A case study using a novel approach to retrospective claims analysis. Journal of Medical Internet Research, 18(6), 1–10. doi:10.2196/jmir.5644 PMID:27251384 Koroukian, S. M., Basu, J., Schiltz, N. K., Navale, S., Bakaki, P. M., Warner, D. F., ... Stange, K. C. (2018). Changes in Case-Mix and Health Outcomes of Medicare Fee-for-Service Beneficiaries and Managed Care Enrollees during the Years 1992-2011. Medical Care, 56(1), 39–46. doi:10.1097/ MLR.0000000000000847 PMID:29176368 Linder, G., Sandin, F., Johansson, J., Lindblad, M., Lundell, L., & Hedberg, J. (2018). Patient educationlevel affects treatment allocation and prognosis in esophageal- and gastroesophageal junctional cancer in Sweden. Cancer Epidemiology, 52, 91–98. doi:10.1016/j.canep.2017.12.008 Maxim, L. D., Niebo, R., & Utell, M. J. (2014). Screening tests: A review with examples. Inhalation Toxicology, 26(13), 811–828. doi:10.3109/08958378.2014.955932 PMID:25264934 Merker, V. L., McDannold, S., Riklin, E., Talaei-Khoei, M., Sheridan, M. R., Jordan, J. T., ... Vranceanu, A. M. (2018). Health literacy assessment in adults with neurofibromatosis: Electronic and shortform measurement using FCCHL and Health LiTT. Journal of Neuro-Oncology, 136(2), 335–342. doi:10.100711060-017-2657-8 PMID:29119424 Minue, S., Bermudez-Tamayo, C., Fernandez, A., Martin-Martin, J. J., Benitez, V., Melguizo, M., ... Montoro, R. (2014). Identification of factors associated with diagnostic error in primary care. BMC Family Practice, 15(1), 92. doi:10.1186/1471-2296-15-92 PMID:24884984

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Moorhead, S., Johnson, M., Maas, M., & Swanson, E. (2018). Nursing Outcomes Classification (NOC)E-Book: Measurement of Health Outcomes. Elsevier. Retrieved from https://books.google.de/books?hl =de&lr=&id=LYlIDwAAQBAJ&oi=fnd&pg=PP1&dq=define+health+outcomes&ots=bOTv_XytcU &sig=hqWEjophQarxuLKuIOw7ea6XdNY#v=onepage&q=definehealthoutcomes&f=false Murcia-Robayo, R. Y., Jouanisson, E., Beauchamp, G., & Diaw, M. (2018). Effects of staining method and clinician experience on the evaluation of stallion sperm morphology. Animal Reproduction Science, 188, 165–169. doi:10.1016/j.anireprosci.2017.11.021 Nath, C., Huh, J., Adupa, A. K., & Jonnalagadda, S. R. (2016). Website Sharing in Online Health Communities: A Descriptive Analysis. Journal of Medical Internet Research, 18(1), e11. doi:10.2196/ jmir.5237 PMID:26764193

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Oldach, B. R., & Katz, M. L. (2014). Health literacy and cancer screening: A systematic review. Patient Education and Counseling, 94(2), 149–157. doi:10.1016/j.pec.2013.10.001 PMID:24207115 Parker, P. D., Heiney, S. P., Friedman, D. B., Felder, T. M., Estrada, R. D., Harris, E. H., & Adams, S. A. (2018). How are health literacy principles incorporated into breast cancer chemotherapy education? A review of the literature. Journal of Nursing Education and Practice, 8(6), 77. doi:10.5430/jnep.v8n6p77 Rana, A. K. M. M., Wahlin, A., Lundborg, C. S., & Kabir, Z. N. (2008). Impact of health education on health-related quality of life among elderly persons: Results from a community-based intervention study in rural Bangladesh. Health Promotion International, 24(1), 36–45. doi:10.1093/heapro/dan042 PMID:19136677 Renshaw, A. A., & Gould, E. W. (2013). Reducing false-negative and false-positive diagnoses in anatomic pathology consultation material. Archives of Pathology & Laboratory Medicine, 137(12), 1770–1773. doi:10.5858/arpa.2013-0012-OA PMID:24283857 Roberts, G. (2015). Improving Health Literacy to Reduce Health Inequalities. UCL Institute for Health Equity. Retrieved from file:///Users/janereeve/Documents/Janes Documents/EGA Module 4/M4 Documents/Improving Health Literacy to Reduce Health Inequalities.webarchive Saeed, H., Saleem, Z., Naeem, R., Shahzadi, I., & Islam, M. (2018). Impact of health literacy on diabetes outcomes: A cross-sectional study from Lahore, Pakistan. Public Health, 156, 8–14. doi:10.1016/j. puhe.2017.12.005 PMID:29353668 Sentell, T. L., Tsoh, J. Y., Davis, T., Davis, J., & Braun, K. L. (2015). Low health literacy and cancer screening among Chinese Americans in California: A cross-sectional analysis. BMJ Open, 5(1), e006104. doi:10.1136/bmjopen-2014-006104 PMID:25564140 Sørensen, K., Van den Broucke, S., Fullam, J., Doyle, G., Pelikan, J., Slonska, Z., & Brand, H. (2012). Health literacy and public health: A systematic review and integration of definitions and models. BMC Public Health, 12(1), 80. doi:10.1186/1471-2458-12-80 PMID:22276600 Thombs, B. D., de Jonge, P., Coyne, J. C., & Whooley, M. A., Frasure-Smith, N., Mitchell, A. J., … Ziegelstein, R. C. (2008). Clinician’s Corner Depression Screening and Patient Outcomes in Cardiovascular Care A. Systematic Reviews, 300(18).

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Xie, D. X., Wang, R. Y., & Chinnadurai, S. (2018). Readability of online patient education materials for velopharyngeal insufficiency. International Journal of Pediatric Otorhinolaryngology, 104, 113–119. doi:10.1016/j.ijporl.2017.09.016 PMID:29287850 Yang, C., Zhang, S., Yao, L., & Fan, L. (2018). Evaluation of risk factors for false-negative results with an antigen-specific peripheral blood-based quantitative cell assay (T -SPOT . TB) in the diagnosis of active tuberculosis: A large-scale retrospective study in China. Academic Press. doi:10.1177/0300060518757381 Zolezzi, M., Eltorki, Y. H., Almaamoon, M., Fathy, M., & Omar, N. E. (2018). Outcomes of patient education practices to optimize the safe use of lithium: A literature review. Mental Health Clinician, 8(1), 41–48. doi:10.9740/mhc.2018.01.041 PMID:29955544

ENDNOTES 1 2



School-based education. Patient-centric data is data collected using modern information and communication technology. This data set includes vital parameters, etc., while patient-centered data is data emanated from the patient or their relatives.

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This research was previously published in Pre-Screening Systems for Early Disease Prediction, Detection, and Prevention; pages 156-189, copyright year 2019 by Medical Information Science Reference (an imprint of IGI Global).

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Chapter 22

How Is the Administrator’s Experience in Managing Health Facebook Groups? The Impact of Social Media in Patients With IBD Claudia Pernencar https://orcid.org/0000-0001-8981-2133 Nova Institute of Communication, Portugal Inga Saboia https://orcid.org/0000-0002-3635-2927 UFC Virtual, Brazil

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ABSTRACT This decade, patients with chronic conditions take advantage of technological resources to share experiences, look for help, and get together in groups. Social media has become a productive spot of health information for users. This chapter clarifies the administrators’ user experience of social media health groups within the context of the Inflammatory Bowel Disease (IBD). Semi-structured interviews with 7 Portuguese and Brazilian managers of Facebook groups were carried out. The authors propose a model of participation in online communities that take into account the variables of Presence–Interconnection between users in daily lives; Relationship–Aspects of experience where users meet; Reputation–Positioning of users related to the status; Groups–Relationship issues between members; Conversations – Extension of the user interaction; Sharing–Represents the exchange, distribution, and reception and Education– The information transmitted. Findings reinforced that administrators’ groups use social media to lead patients´ empowerment.

DOI: 10.4018/978-1-6684-2414-8.ch022

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 How Is the Administrator’s Experience in Managing Health Facebook Groups?

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INTRODUCTION Social media, as a phenomenon of the current decade, assemble a group of digital tools under a single term. The use of these media is permeated by the ideology of contribution, in which users take advantage of technological resources not only for sharing, but also to create content (Kaplan, 2013). As a consequence of the factors pointed out, citizens with different goals are using different media while interacting with a multitude of content and people, forming groups, communicating and increasing their network. In some cases, coming together for a common purpose. In fact, it is interesting to recognize that the health topic is actively used with digital media since the beginning of the current decade. Relative to this fact, a study (Fox & Duggan, 2013) revealed that 72% of Internet users looked for information on the experience of others with the same type of health problems, and 8% posted this type of content. In the same period, Hartley argued (2012) that communication about health in the digital context was a critical issue because citizens were simultaneously positioned as both patients and ‘active’ participants in healthcare (Erikainen, Pickersgill, Cunningham-Burley, & Chan, 2019). The profile of participants mentioned before is what some authors (Guo, Reich, Groshek, & Farraye, 2016) announced as ‘e-patients.’ The term was coined to describe those who are looking for health information in the online environment. They also warned, in their study, that adults were using social media networks to improve their knowledge in this particular field. This means that not only patients were connecting with disease communities but, they were accessing to these and being co-producers of knowledge and information with a linguistic level that can be perceived by most of the patients. Regarding the conception of these communities, they are driven by support and a follow-up of other patients during treatments (Frohlich, 2016; Guo et al., 2016; Reich et al., 2019). Studies have shown that participation in this type of groups had improved patients’ quality of life through sharing experiences with others, and families, promoting the socialization and clinical orientation which means, they, likewise, are also exchanging information about new medical treatments(Szeto et al., 2018). These communities have substantially grown, and about this phenomenon, a different paradigm has emerged, i.e. patients whose quality of life depends on several healthcare services are exploring the advantages of social media to have feedback in real-time. They are also using these tools to help them managing their disease condition (Patel, Chang, Greysen, & Chopra, 2015; Taft & Keefer, 2016). Social media as tools for disease management in chronic illnesses such as asthma, diabetes and cardiac diseases have been observed before (e.g. Ferguson et al., 2014; Hawn, 2009; Nickels & Dimov, 2012). Regarding patients with Inflammatory Bowel Disease (IBD), they are often using these tools to discuss their disease with peers, obtain educational disease-related information, and communicate with their physicians and patient-related organizations (Frohlich, 2016; Guo et al., 2016; Patel et al., 2015; Reich et al., 2019; Szeto et al., 2018; Taft & Keefer, 2016).The Facebook platform, as a social media tool, has empowered patients with chronic conditions expanding new ways of achieving knowledge, leading discussions, or promoting causes. Beyond some intangible benefits of this involvement, there are significant tangible profits to the increased use of digital communication by IBD patients. These include low-cost access to crucial information about the disease, new ways of interacting with the community – build relationships, additional opportunities and sources to understand who the healthcare providers of specific customer services are (Carroll & Ramachandran, 2014). After an introduction elucidating about the context of this chapter, in the following sections a clinical summary about IBD and the evolution of IBD health information in the digital world will be introduced. 398

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 How Is the Administrator’s Experience in Managing Health Facebook Groups?

Secondly, a framework to analyze related Facebook Health Groups information and the theory that will contribute to implementing it will be discussed. Thirdly, the methods used to analyze the object of this study, i.e. the interviews to administrators of IBD Facebook groups coming from two countries, Portugal and Brazil, will be presented. Fourthly, the discussion of the interviews is analyzed, followed, finally, by the concluding remarks. With these, the authors aim to comprehend, mainly, the administrators’ user experience in IBD Facebook groups. Additionally, it is worth noting that other chronic conditions and patients’ involvement with communication, technology and design macro fields, in countries like Portugal and Brazil have been previously discussed (Pernencar, 2013; Pernencar, Romão, & Simões, 2016; Pernencar et al., 2018; Saboia, Pisco Almeida, Sousa, & Pernencar, 2018).

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IBD COMMUNITIES AND GROUPS Inflammatory Bowel Disease (IBD) include two related disorders that involve chronic immune-mediated inflammation of the digestive tract of unknown cause, Crohn’s Disease (CD) and Ulcerative Colitis (UC) (Lennard-Jones, 1989). Both these conditions are with no known cause or cure (Clinic, n.d.). These inflammatory diseases of the digestive tract are characterized by abdominal pain, severe diarrhea, and fatigue and weight loss. The treatment options include oral or injectable medications and/or surgical interventions (Auyeung, 2014). Despite both Crohn’s disease and ulcerative colitis occur from ongoing inflammation of the gastrointestinal tract (GI), there are important differences between the two diseases. In Crohn’s disease any part of the GI tract can be affected, from the mouth to the anus while it mostly affects the end of the small intestine (the ileum). Most notably, the inflammation in Crohn’s disease may extend through the entire thickness of the bowel wall and it can affect some areas of the GI tract leaving other areas untouched (in a ‘patched’ pattern). Ulcerative colitis, however, is limited to the large intestine (colon) and the rectum. Distinguishably, it affects only the innermost layer of the lining of the intestine. It generally begins in the rectum and lower colon, but it can also spread to the rest of the colon. Thus, rectal bleeding is a symptom of this condition. There are cases of IBD that, however, are difficult to determine if Crohn’s disease or ulcerative colitis and in these rare cases, clinicians usually attribute the diagnosis of indeterminate colitis (IC).1 In spite of the exact known cause remaining unsolved, nowadays researchers think that it involves the interaction between genes, the immune system, microbiota (microorganisms in the gut) and unidentified environmental factors. The environmental factors ‘trigger’ harmful immune responses in the intestines attacking the body’s own intestinal tract cells, which results in inflammation, particularly in people that have inherited genes that make them susceptible to IBD (Loddo & Romano, 2015). The incidence and prevalence rates of IBD are increasing. For example, in Europe, the highest reported incidence values are located in Norway, with Ulcerative Colitis – 505 cases per 100,000 individuals –, and in Germany, with Crohn’s Disease – 322 cases per 100,000 individuals. In the U.S.A. 700,000 Americans are affected with IBD (Rachel, Millie, Suzanne, Christina, Wenli, Christopher, Kristen, Robert, & Michael, 2014).The North America numerical amount is lower than in Europe: Ulcerative Colitis – 286 cases per 100,000 individuals in the USA; and Crohn’s Disease – 319 cases per 100,000 individuals in Canada (Ng et al., 2017).

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 How Is the Administrator’s Experience in Managing Health Facebook Groups?

Taft & Keefer, from the Division of Gastroenterology and Hepatology, Northwestern University Feinberg School of Medicine, Chicago argued (2016) from a clinical perspective, that IBD patterns are hard to characterize because this illness presents significant ramifications such as physical, psychological, social, and others. Patients are often stigmatized, and some outsiders view the disease as “gross” or do not understand how it can affect a person’s life. Searching online for IBD related information is not a new paradigm. Cawdron and Issenman (2002), 17 years ago, surveyed by e-mail 162 tertiary-care clinic patients, aged between 8 and 18 years old, in order to identify if this target population was interested in web-based IBD resources: •

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• • •

91,2% of the participants revealed curiosity in searching generic illness content available in specific websites; 80% in reading online experiences coming from other patients; 81% in seeing others’ questions; and 51% in chatting with peers about the disease.

Five years later, Cima and colleagues (2007) surveyed 169 adult IBD patients, with a median age of 46 years old, to comprehend the importance of the Internet in producing general health and diseasespecific information to this target population. The authors discovered that the topic related to the online search was increasingly being recognized as something crucial for IBD patients because, it was improving their compliance with therapy and satisfaction with their healthcare. An interesting analysis from 2010 (Promislow, Walker, Taheri, & Bernstein, 2010) showed, after screening 30 websites with IBD related information, that medical information, treatment and self-management were fields which patients deemed to be essential for them to increase personal disease knowledge. Switching from search on the web for IBD health information, to explore this content using social media tools was a natural action for patients (Azer, AlOlayan, AlGhamdi, & AlSanea, 2017; Frohlich, 2016; Guo et al., 2016; Plevinsky & Greenley, 2014; Reich et al., 2019; Szeto et al., 2018). This scenario may show for the research community that social media tools are providing a plus to IBD patients such as, increasing the interaction with other patients in real-time, and sharing the experiences and fears in the groups. Digging deeper into the context of social media as digital tools, Plevinsky & Greenley (2014) studied their impact as a social functioning (i.e., social support and social connectedness) in IBD youth population (21 participants with ages 14 to 17 years old) in a specific scenario, an IBD post-camp. The authors collected pilot data on a Facebook group created by the participants. Both the camp experience and the Facebook group contributed to improvements in youth social functioning. The authors also showed that supplementing the camp experience with membership to a health group from Facebook enhanced the social functioning in adolescents with IBD. Two years later, a relevant study from Frohlich (2016) involved an ethnographic study, in which 14 online communities were followed. The author recognized that the sense of being actively involved with a disease community through a Facebook group was meaningful and tried to understand how many people were using social media technologies to create their meaning about living with the IBD through discussing specific ways of how people with IBD were using new media technologies to redefine the disease. The results of the study showed that these groups are not always in agreement about how the disease should be redefined: Multiple redefinitions of it exist in the same spaces. The quote of community members to use their public written responses were also a topic of discussion. 400

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 How Is the Administrator’s Experience in Managing Health Facebook Groups?

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Later, Azer and coworkers (2017) evaluated the quality and the accuracy of web-based educational content about IBD. With a total number of 84 websites visited, the authors argued, for upcoming works, that the Internet-based patient education should follow an innovative plan to create online educational material for the public and patients with IBD. The content accuracy and readability level should match with the recommended needs of the target audience, i.e., patients, families and other lay people interested in the topic. However, the authors did not present concrete guidelines of what and how to make these changes. One year later, (Szeto et al., 2018), reported, from a sample of 218 survey participants (aged between 12 to 25 years old) that all patients accessed the Internet daily, but only 17% reported looking up information about IBD “always” or “often.” Less than half (47%) turned to medical websites (WebMD or Crohn’s and Colitis Foundation) for information, and only a small number (16%) connected with other IBD patients. Patients’ preferred method of communication with the provider was by e-mail (88%) compared with a phone call to the office (67%) or hospital website/patient portals (52%). Few patients used mobile applications (apps) to monitor symptoms (2%) or for medication reminders (9%), although there was professed interest. Recently, Reich and colleagues (2019) published a cross-sectional study within the Crohn’s and Colitis Foundation’s IBD Partners’ Internet-based cohort to determine the factors of using social media to obtain IBD-related information. A total of 1960 IBD patients were included. Most of them reported spending between 30 and 60 minutes on social media per day. A proportion of 32% of these patients agreed that these tools could be useful for disease management. Most of them also agreed that it should be used to connect patients with IBD-related organizations, and to obtain IBD-related information online. Half of the respondents could not rate the quality of IBD information posted online. The two last studies, coming from Crohns’s Colitis Foundation2 and published by the Oxford University Press, reinstates the relevance of understanding how a specific social media tool, the Facebook Social Networking Service, may influence patients with IBD through the existing disease groups as a process of online engagement. This encompasses: (a) IBD information gathering in social media; (b) how and whom are the providers of communication; (c) if it exists sense of belonging in the existing IBD Facebook groups; (d) how is the self-expression around IBD, and (e) what is the influence of these communities in individual disease management. Therefore, a framework to analyze related Facebook Health Groups information was created to be applied, as an empirical research method, to analyze the interviews coming about the administrators of IBD Facebook groups. The following section will explain, from the theoretical perspective, all the themes involved in this framework.

IBD FACEBOOK GROUPS – PROPOSED PROCEDURES OF THE METHODOLOGY Facebook Health Group Framework The literature presented above reinforce that the social media tools are being used for patients with IBD, and there is a vast field to be explored as Facebook groups themes. Considering the selected countries to be included in this research - Portugal and Brazil -, it is believed that they are different.3 Since the purpose of the current study is to understand how Facebook networking may influence, as a process of online engagement, IBD groups, it is believed that working with a holistic analysis model is more 401

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 How Is the Administrator’s Experience in Managing Health Facebook Groups?

relevant. The reason is to bring together inputs from two different worlds, the Information and Communication Technologies (Kietzmann, Hermkens, McCarthy, & Silvestre, 2011) and Health Communication (Frohlich, 2016; Patel et al., 2015). In this context, using an experiential framework may suggest interesting directions about how IBD patients are using social media tools.

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Figure 1. Schematics of the Facebook Health Group Framework. Source: author’s original

The Facebook Health Group Framework proposal from Figure 1 put together two different participants: The Administrators and the Members of the same IBD Facebook group. Content shared between them, which occur during the interaction process, is analyzed using two themes. The first, represented by blue color, is related to Information and Communication Technologies, and shows the “seven functional building blocks”, which are technological features of the social network and illustrate relevant role of patients’ experience. According to Kietzmann et al. (2011), it is where experiences could occur in social media. The building blocks references are tools from “The honeycomb of social media” model published by the authors (2011). The second, represented by green color, is focused on Health Communication topic. They are selected clinical taxonomy (Patel et al., 2015) in which it is believed that can help in understanding the impact of the disease. In the following paragraphs these two major topics will be detailed. The framework proposal reflects that the interaction between Administrators and Members occur through the blocks of “Honeycomb of Social Media” (Kietzmann et al., 2011). The blocks aggregate several facets of user experience topics provided by the use of features, and each one can produce different consequences coming from user interaction. Below, the meaning of each block is detailed, following by a description of what is intended to be searched on the administrators IBD Facebook groups interviews:

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 How Is the Administrator’s Experience in Managing Health Facebook Groups?

1. Identification is a block that aggregates users’ self-presentation experience through features allowing the disclosure of personal data (name, age, profession, etc.) and the identification with any relevant topic (e.g., posts about thoughts, feelings, likes and dislikes). One of the pertinent issues is to understand how members of IBD groups are identified; 2. Conversations are an extension that consider the user interaction, which happens through the tools that support the exchange of feedbacks and conversations — Understand what the purposes within the conversations of IBD groups are; 3. Sharing functional block represents the exchange, distribution and reception, not only of the digital content but also the experiences among users — Capture what is shared by users in IBD groups; 4. Presence block adds the idea that being online on social media provides, among users, the impression that people are accessible and present. It transforms the virtual world and its communities in something “real” — Raise the time spent by the administrators of IBD Facebook groups in following the community and how long it takes them to answer a question; 5. Relationships faced with all aspects of the experience already mentioned, and is where the users meet and relate their experiences — Understand how IBD groups foster and assist relations between members; 6. Reputation is the facet in which users can display several types of status by setting up a stratified digital environment. The positioning of a user can be improved with effort and their better reputation can generate greater confidence in others — The way the administrators’ reputations is perceived by members and how it works considering some management tasks; 7. Groups functional block represent the possibility of relationships between members. These social networks can form groups with their own identity and purpose — Understand what is beyond the content of IBD groups and which brings together different user profiles. After exploring the “seven functional building blocks”, and to complete the framework, a clinical taxonomy published in the American Journal of Medicine was included (Patel et al., 2015). The contribute of this axis involves helping with the analysis of social media impact on chronic disease patients’ routines and understanding the influence felt by administrators of IBD Facebook groups with the use of social media tools. Regarding the taxonomy referred, the authors present what they call subsequent influences: •

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• • • •

Support — Related to user interaction through sharing experiences and emotional support to patients and family members; Education — Contribute, from the perspective that information transmitted about the diseases and their care, can be learned; Disease modification — Includes how social media tools are being used for patients’ treatment; Diagnosis — Social media tools contribute to the identification of symptoms and risk factors; Disease management — Social media can support the decision-making process of the healthcare professional himself.

In summary, the main goal of this study is to comprehend how a specific social media tool, Facebook, may influence patients, through the existing IBD groups, as a process of online engagement. This chapter describes only a part of the study and focus in to understand the administrator’s experience in social media IBD Facebook groups. Therefore, other themes from Information and Communications Technologies (Kietzmann et al., 2011) and Health Communication (Patel et al., 2015) were considered 403

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 How Is the Administrator’s Experience in Managing Health Facebook Groups?

in the research, to understand this phenomenon. In the first phase, it was decided to focus only in the groups’ directors perspectives, whom are also patients and that are involved with credible content. Therefore, inside of the main goal other topics should be studied: 1. The purpose of using social media tools; 2. The impact on personal and professional life, namely through care and treatment routines; 3. Knowledge and support achievement. Besides, it is also relevant to understand how these managers use online resources promoting and facilitating relationships between other members, forming large IBD communities. In the following section, the methods used during each stage of the analysis for (1) participants settings and (2) interview instruments, and the goals, will be explained.

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Participants and Settings The IBD Facebook groups interviews are the object of the study in this chapter. The analysis includes two phases of research. Below, the process conducted will be detailed. Strategies for describing, defining, or classifying mixed-methods research studies have been designed to be applied, in particular, to the interviews (Cresweel, 2009) but, the present literature limited the discussion of selecting components. Therefore, an empirical research method to analyze the interviews emerged, as aforementioned. At this phase, the main goal was to identify the sample. This meant to list how many IBD Facebook groups exist in Portugal and Brazil. Before selecting the method of search, the Facebook Research webpage (“Publications,” n.d.) 4 was investigated beforehand in order to see if any research method guidelines existed in the Facebook tools. In the Facebook Research webpage, three fields of searching appeared: one, it is an open field where a word or a sentence can be written; the other, a closed field where a Facebook research area is supposed to be selected; and at last, another closed field to choose the year of publication. The process adopted includes these three fields: the first, an open field where the word “Methods” was written; after that, the “Human-Computer Interaction & UX” item was selected from a closed list; and, in the last field, a range of data was stablished from 2011 to 2019. This process returned a result of eight studies founded. After reading all of the abstracts of the studies found, it was clear to the authors that the Facebook Research webpage (“Publications,” n.d.) did not present any guidelines to work with research methods. Based in what was found, another idea emerged – to work with the Preferred Report Items and Meta-Analysis PRISMA flow diagram (as per described by Moher, Liberati, Tetzlaff, Altman, & PRISMA Group, 2009). Considering that this methodology is hugely used to report systematic reviews and meta-analyses, any restriction related to adopting this methodology was not found (Selçuk, 2019). So, instead of working with a four-phase flow diagram, a three-phase flow diagram was adopted, with micro-phases inside of each one to filtering and deletion: Searching means, looking for IBD through keywords arrangement groups, flowing by their recognition (Identification); Screening represents, the phase where all the information collected, about which are the IBD Groups that exit, is inspected following well defined criteria – exclude groups with less than 1000 members – and at the end, only eligible groups are not rejected (Eligibility). Label Group is the process of categorizing the eligible groups using different labels that helps with the identification of each group and after that, in the final stage, the closing groups are evaluated (For 404

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 How Is the Administrator’s Experience in Managing Health Facebook Groups?

analysis). In this particular scenario, which includes methods like search, screen, and select only IBD Facebook groups, working with a suggested checklist including a 27-item recommendation list on topics (title, abstract, introduction, methods, results, discussion and financing) was irrelevant.

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Figure 2. Flow diagram of the Facebook group screening, selection and label. Adapted from [PRISMA method- Moher et al., (2009)]]

The Searching phase included data collection — IBD Facebook groups — using the Facebook account of one researcher. The keywords arrangement, originally written in Portuguese and later translated to English 5 were: (a) “Inflammatory Bowel Diseases”; (b) “Disease Inflammatory of the Intestine”; (c) “Disease Inflammatory Intestine”; (d) “Crohn’s Disease”. The keywords reflected the name of the disease of interest. In each of these keywords arrangement, two Facebook filters were checked: (a) “Show only” – “Any group” and (b) “Membership” – “Any group” (Figure 2). After the Searching phase, IBD Facebook groups were listed, i.e. Identification phase followed. Then, the Screening process helped to remove, using the criteria of exclusion, those groups with less than 1000 members. At this phase, the Eligibility filter removed those groups that were not directly related to IBD. After this phase, the main

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 How Is the Administrator’s Experience in Managing Health Facebook Groups?

list of IBD Facebook groups was supposed to be complete. The last stage, Label Group, was where the overlapping of groups was examined. In the final phase, the selected groups were chosen For Analysis.

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Administrators Interviews Literature referred before show evidences that some authors worked on the theme of IBD in social media (Frohlich, 2016; Guo et al., 2016; Reich et al., 2019; Szeto et al., 2018) but, most of them use, mainly, surveys as a method of analysis because of the large sample, e.g., 1960 IBD patients surveyed by Reich and colleagues (2019). The only study involving interview to community leaders come from Frohlich (2016). An online ethnographic study of 14 online communities were conducted. This scenario presents a smaller sample of study, close by to what this chapter is working with. This is the reason why interview method was followed. After selecting the IBD Facebook groups, the administrators of these groups were recruited to participate in semi-structured interviews. Private messages were sent to each manager using Facebook’s Messenger tool. The message included a summary with research goals6 and none of the participants was monetarily compensated. The main argument used to engage external patients with this research was through a short explanation that one researcher involved in this work is a Crohn’s Disease patient. Participants questions from Table 1 were divided into three main topics: (1) Profile description; (2) Personal Impact on IBD knowledge and behaviour; (3) Facebook group creation and manage. The themes are related to what the literature (Guo, Reich, Groshek, & Farraye, 2016) showed as areas of future research about the use of social media for IBD. E.g., patients receiving educational material regarding their illness through social media; the quality of the information posted; assessment of social media preferences and usage in patients with IBD, and others. Google forms software was used to create the interview model and a link with the questions was shared with each group manager. The results of the process were also collected online. Considering the author’s experience from the patient perspective and, the different perspectives about the countries involved, it was thought that it could be interesting to analyze the interviews from the administrators of IBD Facebook groups following a framework that merged specific categories coming from themes like Social Media Studies and Clinical Studies. As explained before, in the section “Facebook Health Group Framework”, an experimental model to analyze the interviews was created matching the theoretical approach from Information and Communications Technologies (Kietzmann et al., 2011) with Health Communication (Patel et al., 2015). The authors of this chapter started by reading all the interviews. Subsequently, the participants’ answers were selected according to the individual experience of each researcher about IBD and the countries involved. After this phase, relevant information to be included in each functional category of the “Honeycomb of Social Media”(Kietzmann et al., 2011) was filtered. Then, all the interviews were screened again, but following different criteria, i.e. clinical taxonomy published in the American Journal of Medicine (Patel et al., 2015) as ‘Support and Education’. From the five taxonomies presented, only two categories were selected: Support and Education. This was owing to the direct relationship with patient behavior, not focused on clinical issues (Figure 1). Afterwards, the authors compared and discussed the results. The most relevant findings will be explained in detail in the later section, following some crucial citations from the administrators of IBD Facebook groups.

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 How Is the Administrator’s Experience in Managing Health Facebook Groups?

Table 1. Questionnaire or survey conducted to IBD Facebook groups’ administrators through Google Forms: Free Online Surveys for Personal Use (www.google.com/forms) Questions Q1-Q5 (Profile description) Q1

How long ago was IBD diagnosed?

Q2

What are your age and gender?

Q3

What are your education level and profession?

Q4

Why did you decide to create a specific Facebook group for IBD?

Q5

How much time do you invest per day in the management of the group? Questions Q6-Q7 (Personal Impact on IBD knowledge and behavior)

Q6

What impact does the group have in your personal and professional life?

Q7

Does the knowledge gained from other group members influence your disease care routines? Questions Q8-Q17 (Facebook group creation and manage)

Q8

What are the formal criteria for approving posts?

Q9

When do you think that it is crucial to intervene in a post?

Q10

As an administrator, can you tell for what “About”, “Announcements”, and “Description” tabs are used for?

Q11

Are there incentives on the part of group management to accept the participation of specialist doctors and disease associations in interactions with members?

Q12

As an administrator, are you concerned that all the questions are answered quickly?

Q13

When do you consider that it is necessary to contact a group member?

Q14

As an administrator, do you create IBD specific content?

Q15

Are you concerned with creating content for the group on a regular basis?

Q16

As an administrator, what is most relevant in a post, content innovation or credibility?

Q17

As an administrator, did you receive any contact related to healthcare companies to place advertising in the group’s page?

RESULTS AND DISCUSSION

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Stage 1 – Facebook groups screening and selection The process, which the task was to search for Facebook groups in the company’s webpage – Searching phase –, started with choosing the keywords arrangement. The results (Figure 2) showed a total of 84 groups identified — Identification phase — “Inflammatory Bowel Diseases” (n=6); “Disease Inflammatory of the Intestine”(n=14); “Disease Inflammatory Intestine” (n=9); “Crohn’s Disease” (n=55). After this, IBD Facebook groups with less than 1000 members were excluded, which totaled 71 groups excluded — Screening phase —“Inflammatory Bowel Diseases” (n=5); “Disease Inflammatory of the Intestine” (n=11); “Disease Inflammatory Intestine” (n=7); “Crohn’s Disease” (n=48). Then, 13 groups were screened considering the Eligibility phase — “Inflammatory Bowel Diseases” (n=1); “Disease Inflammatory of the Intestine” (n=3); “Disease Inflammatory Intestine” (n=2); “Crohn’s Disease” (n=7). From this list, two groups were excluded because, one was not related to IBD, and the other was related to recipes and tips from another disease. In the final phase, 8 groups were labelled and analyzed – Label group and For Analysis phases.

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 How Is the Administrator’s Experience in Managing Health Facebook Groups?

Stage 2 – Facebook Groups Administrators Profile Analysis After concluding the first stage, the researchers sent a private message, as explained before, to each member of the administration of these 8 IBD Facebook groups. To ensure confidentially and privacy about each member, the identification of each participant was changed to an alphanumeric code (Deacon, Pickering, Golding, & Murdock, 1999): • • • • • • • •

[Portugal] “Inflammatory Bowel Disease: Starting over needs” — 4 Administrators: A to D; [Brazil] “Inflammatory Bowel Disease: Starting Over Needs” — 2 Administrators: E & F; [Brazil] “Diary of an IBD” — 2 Administrators: G & H; [Brazil] “Crohn’s and ulcerative colitis I have I’ll win!” — 2 Administrators: I to K; [Brazil] “Crohn’s disease and RCUI” — 2 Administrators: L & M; [Brazil] “Crohn’s Disease and reticulitis: Recipes and tips” — 3 Administrators: G, N and O; [Brazil] “IBD - How to live (*)” — 1 Administrator: P; [Brazil] Crohn’s disease and reticulitis Brazil” — 2 Administrators: Q to R.

The study sample included 4 administrators from Portugal and 14 from Brazil. Considering this sample, only eight replies to the message sent by the researchers were obtained. One participant replied arguing that he is a gastroenterology doctor, so he was excluded because it did not make sense to include this profile, even if it represents an IBD Facebook group administrator. In the end, 10 participants did not reply to the researchers contact. Table 2 presents the demographic characteristics of seven participants that answered the message, following the alphanumeric code attributed to each participant. Although the sample size is small, it is interesting to understand that some indicators may prevail in a larger sample: (1) five participants out of seven have IBD diagnosed over ten years ago, and they may demonstrate experience with the disease; (2) the age frame between 31 and 39 suggests that IBD adult population are interested in social media tools like Reich and colleagues (2019) reported in their study; (3) almost all administrators have a degree, B.S. / B.A. or MSc; and, (3) unfortunately, one female participant lives as a disabled pensioner, which is common in chronic diseases patients.

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Stage 3 – Interview Analysis The seven administrators surveyed shared with the authors relevant contributions, showing that the model of participation in online communities is focused in what Frohlich argued in his article (2016), i.e. social media offers spaces where patients have the freedom to build their narratives reflecting individual/group “health behaviors and illness identities.” This scenario is also recognized in the present body of work. The social media environment acts as “open spaces” of shared IBD experiences and thoughts. The Facebook Health Group Framework presented in Figure 1 gave support such as, guidelines to explore the results of interviews. Each category of the framework was studied in order to explore the interview content. As a result, a summary of the sampling analysis is presented below. In the Presence category, it was found that social media for most of the participants interfered with their lives. All of them demonstrated to be concerned with the idea of always being available to the community. This means being online many times throughout the day. As shown by the participants’ answers 408

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 How Is the Administrator’s Experience in Managing Health Facebook Groups?

Table 2. Demographic analysis of the Administrators of IBD Facebook Groups that replied to the proposed survey Portugal Group code

1

Alphanumeric code

IBD diagnosed

Age

Gender

Education

Profession

A

18 Years

34

Male

B.S.

Civil engineer

B

12 Years

39

Female

MSc

Policy Coordinator

C

12 Years

37

Female

Secondary School

Without a profession/ invalidity pensioner

D

5 Years

31

Female

MSc

Lecture: Portuguese, Latin, Greek, English

G

4 Years

31

Male

Incomplete B.S. / B.A.

Unemployed

Brazil 2 3 4

L

12 Years

37

Male

B.S.

Systems Analyst Unemployed

M

10 Years

35

Female

B.S.

Surgical Instrumentation Specialist

(Q5 and Q6), it is incredible how much time coming from patients’ personal lives is dedicated to different tasks related to Facebook group management. It is a large amount of time, but that some administrators considered to be essential. To be online and in the groups constitute part of their “personal life”. Q5 • Participant L – “On average 18 hours.” Q5 • Participant G – “About 7 to 8 hours a day, my time invested in the group.” Q6 • Participant D – “The group is part of my personal life. My husband is almost always aware of events.” The majority of administrators revealed that Presence is shown by the user’s availability to find further information and provide support (Q9 and Q12). This means that a fast reply is considered a crucial task, so it was one of the main preoccupations for all administrators. On the other hand, the perception of presence on Facebook is a feature available and easy to see. Some participants said that this task is the responsibility of a specific administrator member.

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Q9 • Participant C – “… When it is necessary to inform and support.” Q12 • Participant M – “Yes, there are always members who help with the answers.” After reading the interviews, the idea of self-belong emerged because the patient who has a chronic condition exists and wants to share the experience with other patients (Q4, Q7 and Q8). This shows the purpose of an online group – i.e. to make relationships where experiences are shared and doubts are clarified (Szeto et al., 2018). Another critical issue about this category is that for participants is crucial to help and support others. It is a way to overcome fears and to deal with the disease, together, thus through mutual learning(Q7).

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 How Is the Administrator’s Experience in Managing Health Facebook Groups?

Q4 • Participant B – “There was a lack of a sharing space where patients felt safe to share their experiences.” Q7 • Participant D – “It’s a group with such interesting content that, even as a manager, I learn from the experience of many other members.” Q8 • Participant L – “Share doubts, fears and together learn to cope with this disease and help each other like a big family.” Researchers also felt that some managers fully dedicated themselves to their groups without thinking about any exchange or getting anything in return (Q5). Another relevant detail detected during the readings was the relationships between users created by online tools such as Facebook, which may imply decisions about disease management that occur offline. E.g., the answer of a participant to (Q6). Q5 • Participant G – “We do what we can” Q6 • Participant M – “It was through the group that I had a doctor’s appointment that I treat myself today.” Considering the Relationship category, one critical problematic mentioned by some groups was that regularly occurs donation of medications to other patients. One group, from Portugal, adopted an interesting strategy. It defines specific criteria to approve this process online and have shared in the interview how it happens (Q12). Q12 • Participant B – “And in the case of drug donations to verify that the member actually has the prescribed medication.” For Administrators, online Relationship in IBD communities sometimes mean to be strict with other members. They stated that sometimes it is required to manage incorrect verbal treatment, to avoid conflicts, when some problems arise in posts (Q8, Q10 and Q14). Q8 • Participant L – “Offensive comments to group members will be excluded along with the author.” Q10 • Participant M – “When there are many disagreements and offenses, the post is deleted, and the person banned from the group.” Q14 • Participant D – “When group rules are broken, when there is a lack of respect, or if it jeopardizes the proper functioning of the group.”

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In addition, one administrator, participant L, from a Brazilian group, reported concerns with privacy. Q12 • Participant L – “From the moment the member does not follow a certain rule, inbox contact is done to solve the problem and to have everything on record.” After reading all the interviews, researchers agreed that Reputation category is the most relevant one, hence it will be detailed in this chapter. In three groups, two from Brazil and one from Portugal, occurred a similar scenario where members are invited to become an administrator member (Q4). Q4 • Participant M – “I was invited to the group administrator when I joined as a member.”

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 How Is the Administrator’s Experience in Managing Health Facebook Groups?

Q4 • Participant L – “Then she published the vacancies for administrator, and I talked to her and started managing the page with her.” Q4 • Participant D – “The group was already created; I was invited by the creator and administrator (at the time) to join the administration.” In two questions, Q4 and Q7, Relationship and Reputation categories overlapped. In this particular scenario, the Reputation of an administrator was for participants something crucial to manage what can happen online between group members in a post, for example. Another interesting point is when members try to overlap their doctor statements during an appointment (that occurs offline), with experiences shared by other patients. Some administrators, one from the Portuguese group and another one from the Brazilian group, referred that they felt an obligation to intervene and to say something. Q4 • Participant B – “With any assurance that the information shared is based on the best available evidence.” Q7 • Participant L – “Of course the group is a space for sharing experiences, but this space should never overlap with medical knowledge when it comes to treatments as these vary according to each person as well as the response time.” Reputation also involves guaranteeing that the credibility of the contents is considered before being posted. It is a point that most administrators referred to be crucial to follow (Q8). One administrator, from a Brazilian group (Participant L), wrote in the interview all the rules for group members. Q8 • Participant L – “Any post needs approval from the group administrator or moderator. To belong to the group, the user must submit a request where there is a questionnaire to be answered and the rules of the group. The only ways to participate are by request or invitation by another member and both require a questionnaire response and acceptance of the rules.” Q8 • Participant C – “Related to IBD, not disrespectful, content to be trustworthy.”

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From a commercial perspective, Reputation is a category where several participants shared their preoccupation as administrators. They are meticulous in the management of the group (Q11 and Q17). Q11 • Participant D – “We do not accept advertising (of whatever kind), denotative content posts, alternative medicines that undermine the science of traditional medicine.” Q17 • Participant L – “NO MONEY DONATIONS ALLOWED. Every day we receive contacts to disclose from companies, health professionals, drug suppliers, websites… but they are refused because this is not the group’s goal!” Groups category can be the most suggestive as a social media functionality presented by Kietzmann et al. (2011). Indeed, creating groups can mean to build an extension of the administrators as patients to other members, improving the sense of community with a common purpose, bringing all together with their experiences and support each other (Q4 and Q8). Q4 • Participant C – “For the need for a narrower group to share experiences and information with which I identify.” 411

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 How Is the Administrator’s Experience in Managing Health Facebook Groups?

Q8 • Participant L – “Postings of political, sporting or religious content will not be allowed with the author being banned out of the group. There are specific groups for these issues.” Q8 • Participant B – “They have to be related to DII and/or its daily management.” The purpose of online Conversations and mutual help reflect the sense of community that other authors reported in IBD patients’ environment (Azer et al., 2017; Frohlich, 2016; Plevinsky & Greenley, 2014; Reich et al., 2019). Problems in online conversations always existed, and verbal disrespect is not something new. Administrator consider the group to be an open space that can serve for emotional support (Q4, Q6, and Q8). Q4 • Participant B – “There was a lack of sharing space where patients felt safe to share their experiences.” Q6 • Participant A – “Acquisition of personal experiences, feeling of help, and more knowledge about IBD.” Q8 • Participant L – “We are here to help in the best way possible and we count on your support!” Changes in Conversations that fall outside of the groups primary purpose do happen. These topics have to be continuous and cannot be left in the open. Quick replies are crucial to create a sense of being online and, to show the idea that conversations are always monitored (Q12). Q12 • Participant M – “Yes, there are always members who help with the answers.” Q12 • Participant D – “I wish so, but it is impossible given the number of daily posts. We have two managers who are always more on top of the event and effectively try to do so whenever possible.” Sharing experiences consist of “verbalizing” thoughts to help answering questions, and to give information and emotional support. This category is another one that emerges because it involves the main purpose of a Facebook group (Q4, Q6 and Q8).

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Q4 • Participant C – “For the need for a narrower group to share experiences and information with which I identify.” Q6 • Participant A – “Acquisition of personal experiences, feeling of help.” Q8 • Participant L – “Share doubts, fears and together learn to cope with this disease and help each other like a big family.” Individual’s identity leads who share information in these groups. The authors of this work believe that all patients reveal their identity when they are Sharing content with others (Q4, Q6 and Q12). One category presented in the framework followed is overlapped, the Education. Several authors (Kietzmann et al., 2011; Patel et al., 2015) revealed similar importance to the topic but exhibiting different perspectives (See section “Facebook Health Group Framework”). Member education by sharing questions, experience or even information seems to be relevant to all administrators but always considering the accuracy or credibility that exists behind of all information (Q4, Q7 and Q10). Q4 • Participant B – “With any guarantee that the information shared is based on the best available evidence.”

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 How Is the Administrator’s Experience in Managing Health Facebook Groups?

Q7 • Participant C – “In a way, yes, although it filters and only does something after informing the gastroenterologist doctor.” Q10 • Participant D – “When there are comments that could mislead other members, when they give wrong medication and treatment advice.” The results of the interviews also showed that the Education of IBD Facebook group members reflect the patients’ behavior outside of the online world. Some administrators identified that (Q6 and Q10): Q6 • Participant M – “Very important, because we clarified many doubts and it was through the group that I had the doctor’s appointment that I treat myself today.” Q6 • Participant C – “Positive, because in it I acquired more” baggage “to deal with the pathology, in both contexts.” Q10 • Participant C – “When they break the rules, when it’s necessary to inform and support.” Health Communication, where the Emotional category is included (Patel et al., 2015), represents according to the participants, emotional support, group support, and a “safe place” feeling (Q8 and Q10). Q8. • Participant L – “Share doubts, fears and together learn to cope with this disease and help each other like a big family[…] We are here to help in the best way possible and we count on your support!” Q10 • Participant C – “When they break the rules, when it’s necessary to inform and support.”

CONCLUSION Studies Limitation This work faced some limitations. The process involving the contact with administrators was difficult because none of the authors / researchers knew any member or administrator of a IBD Facebook group. Several messages were sent but some did not get a reply, even with the help of other members outside of these groups.

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Final Remarks This chapter has described an investigation to a Facebook phenomenon, the administrators’ experience in social media IBD Facebook groups, following different criteria of analysis coming from Information and Communications Technologies and Health Communication. Evidences from this study suggest that after understanding the preoccupations of the administrators, it is crucial to analyze the members perspective about using this online tool as an approach of overcome fears and to deal with the disease together. The findings of this pilot study suggest that the Administrator’s Experience in Managing Health Facebook Groups fall under the model of participation in online communities proposed in this Chapter, being subdivided into the following blocks: Presence that refers to the way social media for most of the participants interfered with their lives; Identification that is relative to the users’ self-presentation experience; Conversation that considers the user interaction and exchange of feedback; Sharing of the

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 How Is the Administrator’s Experience in Managing Health Facebook Groups?

digital content by uses in IBD groups; Relationships that are essential in group and member’s assistance towards health; Reputation (i.e. status) and Groups that may reinforce patients’ identity and purpose. The insights gained from this research may be of assistance to policymakers, IBD patients and other stakeholders involved in the decision-making process of healthcare. It lays the groundwork for future research into the use of social media in disease management, its impact on personal and professional life, namely through care and treatment routines; and, finally, health management and support achievement.

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Deacon, D., Pickering, M., Golding, P., & Murdock, G. (1999). Researching Communications: A Practical Guide to Methods in Media and Cultural Analysis. London, UK: Hodder Education. Erikainen, S., Pickersgill, M., Cunningham-Burley, S., & Chan, S. (2019). Patienthood and participation in the digital era. Digital Health, 5. doi:10.1177/2055207619845546 PMID:31041112 Ferguson, C., Inglis, S. C., Newton, P. J., Cripps, P. J. S., MacDonald, P. S., & Davidson, P. M. (2014). Social media: A tool to spread information: a case study analysis of twitter conversation at the Cardiac Society of Australia & New Zealand 61st annual scientific meeting 2013. Collegian (Royal College of Nursing, Australia), 21(2), 89–93. doi:10.1016/j.colegn.2014.03.002 PMID:25109206 Fox, S., & Duggan, M. (2013, January 15). Health Online 2013. Retrieved November 24, 2019, from Pew Research Center: Internet, Science, & Tech website: https://www.pewresearch.org/internet/2013/01/15/ health-online-2013/ 414

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Frohlich, D. O. (2016). The Social Construction of Inflammatory Bowel Disease Using Social Media Technologies. Health Communication, 31(11), 1412–1420. doi:10.1080/10410236.2015.1077690 PMID:27050670 Guo, L., Reich, J., Groshek, J., & Farraye, F. A. (2016). Social Media Use in Patients with Inflammatory Bowel Disease. Inflammatory Bowel Diseases, 22(5), 1231–1238. doi:10.1097/MIB.0000000000000713 PMID:26894839 Hartley, J. (2012). Designing Easy-to-Read Text. In Writing Health Communication: An Evidence-Based Guide (pp. 7–22). doi:10.4135/9781446288054.n2 Hawn, C. (2009). Take two aspirin and tweet me in the morning: How Twitter, Facebook, and other social media are reshaping health care. Health Affairs (Project Hope), 28(2), 361–368. doi:10.1377/ hlthaff.28.2.361 PMID:19275991 Kaplan, K. (2013, June 31). When and How to Create Customer Journey Maps. Retrieved April 20, 2015, from Nielsen Norman Group website: https://www.nngroup.com/articles/customer-journey-mapping/ Kietzmann, J. H., Hermkens, K., McCarthy, I. P., & Silvestre, B. S. (2011). Social media? Get serious! Understanding the functional building blocks of social media. Business Horizons, 54(3), 241–251. doi:10.1016/j.bushor.2011.01.005 Lennard-Jones, J. E. (1989). Classification of inflammatory bowel disease. Scandinavian Journal of Gastroenterology. Supplement, 170(sup170), 2–6, discussion 16–19. doi:10.3109/00365528909091339 PMID:2617184 Loddo, I., & Romano, C. (2015). Inflammatory Bowel Disease: Genetics, Epigenetics, and Pathogenesis. Frontiers in Immunology, 6, 551. doi:10.3389/fimmu.2015.00551 PMID:26579126 Moher, D., Liberati, A., Tetzlaff, J., & Altman, D. G.PRISMA Group. (2009). Preferred reporting items for systematic reviews and meta-analyses: The PRISMA statement. PLoS Medicine, 6(7). doi:10.1371/ journal.pmed.1000097 PMID:19621072

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Ng, S. C., Shi, H. Y., Hamidi, N., Underwood, F. E., Tang, W., Benchimol, E. I., ... Kaplan, G. G. (2017). Worldwide incidence and prevalence of inflammatory bowel disease in the 21st century: A systematic review of population-based studies. Lancet, 390(10114), 2769–2778. doi:10.1016/S0140-6736(17)324480 PMID:29050646 Nickels, A., & Dimov, V. (2012). Innovations in technology: Social media and mobile technology in the care of adolescents with asthma. Current Allergy and Asthma Reports, 12(6), 607–612. doi:10.100711882012-0299-7 PMID:22976493 Patel, R., Chang, T., Greysen, S. R., & Chopra, V. (2015). Social Media Use in Chronic Disease: A Systematic Review and Novel Taxonomy. The American Journal of Medicine, 128(12), 1335–1350. doi:10.1016/j.amjmed.2015.06.015 PMID:26159633 Pernencar, C., Romão, T., & Simões, G. (2016). The Design Process of an e-Health project – Applying the HSI framework for interface analysis. Presented at the 2016 IEEE 4th International Conference on Serious Games and Applications for Health (SeGAH), Orlando, FL.

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Pernencar, C., Sousa, P., Frontini, R., Martinho, R., Runte, D., Mendes, D., & Carvalho, M. (2018). Planning a health promotion program: Mobile app gamification as a tool to engage adolescents. CENTERIS 2018 - International Conference on ENTERprise Information Systems / ProjMAN 2018 - International Conference on Project MANagement / HCist 2018 - International Conference on Health and Social Care Information Systems and Technologies, CENTERIS/ProjMAN/HCist 2018, 138, 113–118. 10.1016/j. procs.2018.10.016 Pernencar, C. A. (2013, May). My Crohn’s diease on real time information. In 2013 IEEE 2nd International Conference on Serious Games and Applications for Health (SeGAH) (pp. 1-7). IEEE. 10.1109/ SeGAH.2013.6665304 Plevinsky, J. M., & Greenley, R. N. (2014). Exploring Health-related Quality of Life and Social Functioning in Adolescents with Inflammatory Bowel Diseases After Attending Camp Oasis and Participating in a Facebook Group. Inflammatory Bowel Diseases, 20(9), 1611–1617. doi:10.1097/MIB.0000000000000120 PMID:25025714 Promislow, S., Walker, J. R., Taheri, M., & Bernstein, C. N. (2010). How well does the Internet answer patients’ questions about inflammatory bowel disease? Canadian Journal of Gastroenterology, 24(11), 671–677. doi:10.1155/2010/957264 PMID:21157582 Publications. (n.d.). Retrieved October 21, 2019, from Facebook Research website: https://research. fb.com/publications/ Randell, R. L., Long, M. D., Cook, S. F., Wrennall, C. E. D., Chen, W., Martin, C. F., ... Kappelman, M. D. (2014, March 1). Validation of an Internet-Based Cohort of Inflammatory Bowel Disease (CCFA Partners). Inflammatory Bowel Diseases, 20(3), 541–544. https://doi.org/10.1097/01.MIB.0000441348.32570.34 Reich, J., Guo, L., Groshek, J., Weinberg, J., Chen, W., Martin, C., ... Farraye, F. A. (2019). Social Media Use and Preferences in Patients With Inflammatory Bowel Disease. Inflammatory Bowel Diseases, 25(3), 587–591. doi:10.1093/ibd/izy280 PMID:30203036 Saboia, I., Pisco Almeida, A. M., Sousa, P., & Pernencar, C. (2018). I am with you: A netnographic analysis of the Instagram opinion leaders on eating behavior change. CENTERIS 2018 - International Conference on ENTERprise Information Systems / ProjMAN 2018 - International Conference on Project MANagement / HCist 2018 - International Conference on Health and Social Care Information Systems and Technologies, 138, 97–104. 10.1016/j.procs.2018.10.014

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Selçuk, A. A. (2019). A Guide for Systematic Reviews: PRISMA. Turkish Archives of Otorhinolaryngology, 57(1), 57–58. doi:10.5152/tao.2019.4058 PMID:31049257 Szeto, W., van der Bent, A., Petty, C. R., Reich, J., Farraye, F., & Fishman, L. N. (2018). Use of Social Media for Health-Related Tasks by Adolescents With Inflammatory Bowel Disease: A Step in the Pathway of Transition. Inflammatory Bowel Diseases, 24(6), 1114–1122. doi:10.1093/ibd/izy021 PMID:29788360 Taft, T. H., & Keefer, L. (2016). A systematic review of disease-related stigmatization in patients living with inflammatory bowel disease. Clinical and Experimental Gastroenterology, 9, 49–58. doi:10.2147/ CEG.S83533 PMID:27022294

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 How Is the Administrator’s Experience in Managing Health Facebook Groups?

ENDNOTES 1



2



3



4



5



6



Inflammatory bowel disease (IBD), https://www.cdc.gov/ibd/what-is-IBD.htm (access date: November 9, 2019) ; The Facts About Inflammatory Bowel Diseases. New York, NY: Crohn’s and Colitis Foundation of America; 2014 retrieved from https://www.crohnscolitisfoundation.org/sites/ default/files/2019-02/Updated%20IBD%20Factbook.pdf (access date: November 9, 2019); “The Crohn’s & Colitis Foundation is a non-profit, volunteer-fueled organization dedicated to finding the cures for Crohn’s disease and ulcerative colitis, and to improving the quality of life of children and adults affected by these diseases. It was founded in 1967 by Irwin M. and Suzanne Rosenthal, William D. and Shelby Modell, and Henry D. Janowitz, M.D. “https://www.crohnscolitisfoundation.org/” (Access date: November 9, 2019); Related to the sample presented in this chapter, it is important to explain one detail: 1 researcher is an IBD Portuguese Patient with the disease since 2002, and the other researcher is Brazilian nonpatient. Crohn’s patient for fifteen years that has undergone several distinct treatments and gone through innovative hospital innovative care, a surgery, and other disease complications; Facebook research is the company repository where anyone has free access to Facebook scientific publications. https://research.fb.com/publications/ (Access date: November 9, 2019); “Doenças Inflamatórias do Intestino”; “Doença Inflamatória do Intestino”; “Doença de Crohn”; “Doença Inflamatória Intestinal”; “DII Facebook Group Administrators - Profile and Management Assessment.” As part of an investigation in Portugal and Brazil on the management of the Facebook groups dedicated to Inflammatory Bowel Diseases, we now request that you answer the questions in this questionnaire or via voice mail in Messenger by 22 September. This study is to be published in 2020.

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This research was previously published in Communicating Rare Diseases and Disorders in the Digital Age; pages 315-341, copyright year 2020 by Medical Information Science Reference (an imprint of IGI Global).

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Chapter 23

Social Support Through Digital Media?

Breast Cancer Groups at Facebook Aslıhan Ardıç Çobaner Mersin University, Turkey Mine Gencel Bek University of Siegen, Germany

ABSTRACT This chapter aims to analyze the use of online support groups for breast cancer in Turkey. After describing the general characteristics of such groups, the authors closely analyze the two Facebook groups on breast cancer. The analysis focuses on how the patients read the illness and their struggle to cope with the illness; how social support mechanisms are used; and which aims and motivations are foregrounded. Both quantitative and qualitative techniques are used in the research. Informed by the international research literature, the chapter also tries to underline the similarities and differences of online social media in the Turkish context. Although the main purpose of the groups is to share information, emotional empathy and shared personal experience are also obvious.

INTRODUCTION

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It is full of friends here, “fate” friends who worry about each other, pray for each other and share recommendations. (Breast Cancer Information Group) Cancer is one of the common diseases in Turkey following the increasing industrialization, urbanization and the changes in life-styles in the last few decades. Breast cancer is the most common cancer among women in both Turkey and the world. One in four female cancer patients in Turkey has breast cancer. 42.5 per cent of breast cancer patients are aged between 15 and 49, according to the Department of Health records (Sağlık Bakanlığı, 2014, p 40). The decreasing role of the state in public health and the rising DOI: 10.4018/978-1-6684-2414-8.ch023

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 Social Support Through Digital Media?

privatization have been especially associated with the “reform” processes in the age of globalization and neo-liberalism (Keyder, 2007, p 23). The inequalities increased further with a new understanding on health, according to which health is no longer seen as part of human rights, the responsibility of the state, but, instead, is reduced to an issue of individual responsibility. Thus, protecting health, avoiding harmful habits, evaluating treatment types during illnesses, achieving correct information and appropriate treatment are all seen as the responsibility of the individual. The media is a prominent sphere in which this new understanding and the discourse of health finds space. Since the 1990s, the media has become particularly important for information on protection from illnesses (Terzioğlu, 2011, p 114). In the last decade the Internet has become a space for patients to search for and share information on health issues (54.1 per cent in 2011 and 65.9 per cent in 2016) (TUIK, 2011; 2016). In parallel with global trends, the use of the Internet and the social media networks such as Facebook, Twitter and Linkedn increased in recent years in Turkey. According to Turkish Statistics Institute (TUIK), Internet use in the whole population was 45 per cent in 2011 and 61.2 per cent in 2016. Facebook is the most used social media network in Turkey, with 32 per cent of all social media use in 2016 (Ayvaz, 2016). This chapter aims to analyze the use of the online support groups on breast cancer through their Facebook pages by focusing on how the patients read the illness and the struggle to cope with the illness; how social support mechanisms are used. The study is not gender blind; on the contrary, it has a gender perspective in the analysis.

BACKGROUND

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Online Health Communities: Breast Cancer Groups on Facebook The use of social networks in seeking social support has been an issue much investigated in recent years (Shpigelman and Gill, 2014, p. 610). Social support groups can be useful for patients in several ways: First, they provide an opportunity for patients to share their experiences. The doctor has limited time to listen to patients and the increasing neo-liberalization and commercialization processes and the current power hierarchies also play a part. For private hospitals and clinics, patients are seen as customers. The doctors are not only responsible for saving lives but also for increasing profit. For public hospitals and clinics, the doctors do their job in its narrowest sense, but neglect the psychological aspects and sufficient communication with the patients. The accountability of the public system to citizens overall is not sufficiently developed in Turkey. The doctors do not share their patients’ experience. When patients meet others with the same illness, they feel less lonely in their battle. The main function of social support groups is information exchange which can increase their knowledge and strengthen them in the treatment process. The patients are not only receivers of social support; they also help others, which affects their psychology positively (Van Uden-Kraan, 2008, p. 10). However, active participation in such groups is not always possible because of reasons such as geographical distance, fear of stigmatization or even the lack of such groups. Currently there is a general lack of social support in Turkish hospitals, both public and private. Since the 1990s, online social support groups have got around such obstacles through chat rooms, listservs, bulletin boards, newsgroups and web forums and now probably outnumber face-to-face groups; they are accessible 24 hours a day; and are economically advantageous and anonymous (Van Uden-Kraan, 2008, p. 11). Social network sites can be used to support relationships in contexts where life conditions 419

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 Social Support Through Digital Media?

isolate people (Steinfield, Elison &Lampe, 2008). They enable members to participate passively through just reading and accessing information without joining any discussion. This can decrease loneliness and depression while enhancing their general condition. However, there are still obstacles such as illiteracy and access to internet connection. Another disadvantage is the quality and the validity of the information. And, since there is no official guide or professional moderator, conversations within the groups can sometimes contain negative, violent and aggressive aspects. Also, the uncertainty about the timing of the possible replies to questions can also be a worry and can even negatively influence the treatment process (Van Uden-Kraan, 2008, p.11). Klemm et. al (2005) analyzed messages posted over a 2-month period on an online cancer caregiver listserv. According to that, supportive and hopeful statements were common among online participants. Besides this, there were also emotional/physical/psychological responses which contained anger, weakness, exhaustion, grief, and sadness. A review of the literature on on-line cancer support groups revealed that online cancer support groups helped patients cope more effectively with their disease (Klemm et.al 2003). By relying on their analysis on 2 years of content from a popular Twitter-based cancer community, Gall Myrick et. al (2016) reveal that the most common type of social support was information expression, followed by information reception and emotional support expression, with emotional support reception representing the least common type of social support. Even though there is some research on the advantages and disadvantages of online social support, there is little literature on the positive and negative dimensions of patient participation in the online support groups. The literature focuses on social support groups started by health professionals, health associations or organizations and neglects the groups established by patients themselves (Van Uden-Kraan, 2008, pp. 11-12). Still, it is possible to list some research comparing online support groups with face-to-face groups. Research by Bender, Katz, Ferris, Oh & Jadad (2013) includes a questionnaire involving 73 attendees at a Canadian support training program examining when and why they used online support, as well as interviews with 12 people comparing online support with traditional face-to-face support. The research showed that online support was used by one third of the respondents, mostly (73.9 per cent) during the treatment and primarily for information (91.3 per cent) and symptom management (69.6 per cent) and less for emotional support (47.8 per cent). Emotional support was catered for by the face-to-face support groups. According to the research, half of the non-users declared that they did not need online support. Online communities, the authors argue, fill gaps in supportive care by addressing the unmet needs of breast cancer patients. Research by Fogel, Albert, Schnabel & Ditkoff (2002) focused on internet use and social support among women with breast cancer in New York City. Interview analysis from 188 participants showed that 42 per cent of patients used the Internet for medical information and also showed that Internet use was associated more for social support and to counter loneliness than for other purposes. Shaw et al. (2000) reveal that women patients considered the computer-mediated support group─ part of a program called Comprehensive Health Enhancement Support System (CHESS)─as an “additional and unique source of support” for women with breast cancer. The computer-mediated social support groups can complement both the information from health care providers and the support of family and friends. The interviews with 12 women show that the computer-supported group had many functions, including emotional support, encouragement and information. Hearing the similar problems of others, sharing diagnoses similar to their own and seeing that they survived give patients a sense of hope. Barbara Sharf (1997) explored a Canadian online discussion group, Breast Cancer List, by using participant-observation and discourse analysis in a comparison with face-to-face social groups. Availability, experience and expertise are seen as some of the main advantages of the list compared to face-to-face 420

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social support groups. The research identified three functions of the list: Exchange of information, social and psychological ‘cyber’ support, and personal empowerment, which makes them informed and leads them to take action. This research will be quoted throughout the chapter, with some specific remarks on gender. Some studies discuss the gender differences in the use of on-line social support groups: While men seek for information, women tend to share their experience and encourage others (Klemm et al 2005).

Research Facebook as a social network allows members to not only connect with the other members but also share their memory or their current lives in a multi-modal way, including writing, photos or video (Eisenlauer, 2014, pp 309-310). This chapter explores the characteristics of the online support groups/communities of breast cancer patients and their relatives or companions through the analysis of their Facebook pages, with a special focus on how they “read” the illness with these questions: 1. What are the general characteristics of the breast cancer patient groups’ Facebook pages (including their name, visual appearance and the membership structures)? 2. What are their main aims: Seeking funding, support and/or increased awareness? 3. What are the characteristics of the posts being shared? 4. How is social support being asked for and read/interpreted? What is the role of the experts in this process? 5. How are illness, health, survival and death being read and interpreted in these pages? Does reading differ according to age and socio-cultural levels? What are the most discussed topics? What is the role of gender relations?

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Methodology The messages and comments of the users give important clues to how they present/portray themselves and their identities. This research adapted content analysis as a starting technique and followed with an ethnographic analysis. For this research, in January 2017, Turkish Facebook groups were found by searching “meme kanseri” (breast cancer). The identities are protected as shown below in Figure 1. The research identified the four largest groups that aim to provide social support and solidarity and regularly and actively send posts (Meme Kanseri Bilgilendirme Grubu, MetAmazon-Metastazik Meme Kanseri Dayanışma Grubu, Metastazik Meme Kanseri (phase 4) and Lokal İleri Meme Kanseri (phase 3). In parallel with the ethnographic methodology, the chosen groups’ pages were observed during a one month period (1-31 January 2017) and the entire posts and comments made to the posts were copied and archived as a file by using the “PrintScreen” function of computer. Participants were informed and their consent gained ethically by the system administrators during the research process. All the posts (221) were analyzed according to the research questions listed above and the participants are anonymized here. The conversations have been translated.

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Figure 1. Example to search on Facebook with the words of “meme kanseri”

The General Characteristics of Breast Cancer Groups on Facebook in Turkey According to the research, 19 group pages were accessed (6 closed and 13 open groups). Groups with fewer than 10 members were not included in the research. The information showing their name, member number, aim and whether open or closed are given in Table 1.

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Analysis of Group Pages The pages, in total 19, of the largest four group established for social support were chosen and were analyzed over a one month period. (Meme Kanseri Bilgilendirme Grubu, MetAmazon-Metastazik Meme Kanseri Dayanışma Grubu, Met Meme (Metastazik Meme Kanseri (Phase 4) ve Lokal İleri Meme Kanseri (Phase 3) ve AMAZON KADINLARI-MEME KANSERİ İLE MÜCADELE GRUBU). Table 2 shows the characteristics of these four groups: According to observations, only the two of these groups were identified as groups who regularly keep postings. Thus, the data of this research was produced from these two social support groups actively sharing a total of 221 posts and comments (Meme Kanseri Bilgilendirme Grubu-Breast Cancer Information Group- and Metastazik Meme Kanseri (Phase 4) and Lokal İleri Meme Kanseri (Phase 3)- Met Meme (Phase 4) and Local Advanced Breast Cancer (Phase 3) (Table 3). For the first group, BCIG and, for the second, MET will be used as abbreviations. This study is based on the content analysis of two on-line social support groups. A coding schema was developed with the inspiration of the categories in the study of Van Uden-Kraan (2008). Each post/

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message is coded according to characteristics such as gender, age (young, middle-aged or elderly), their role (patient, patient relative/friend, group organizer, health professional) and themes (illness or the implications of illness), based on the information being shared and their profile. The coding of 221 posts by 100 users shows that most of the participants are women (98 per cent) and young (34 or younger) (53 per cent).

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Table 1. The general characteristics of breast cancer groups on Facebook

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Table 2. Four social support group pages

Table 3. Two social support group pages

There are only three participants over 65 the main participants are patients (71 per cent), 17 per cent are relatives. In some cases, group organizers are also patients (2 per cent), relatives (2 per cent) or health professionals (3 per cent). The majority of participants (75 per cent) shared only one post. There are participants from all stages. More than half of them are in treatment (59 per cent) and those that participated the least are either undiagnosed or post diagnosis.

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The Themes of the Posts The themes are coded as “the illness,” “the implications of illness” and “chit chat.” The first theme, illness, the dominant theme─ especially in the first group, covers the posts on protection from illness, early diagnosis and awareness, symptoms, diagnosis, treatment, medicine and alternative treatments, interaction with health experts and associations. Everyday talk is seen mostly in the second group: implications of the illness. The first theme is mostly in the form of questions. Participants ask about the replies of others who have experienced a similar situation or used the same medicine: It is interesting that the patients do not want to read official notes about the possible effects of the medicine but want the “ordinary” voices of the others: Anyone feeling tired after radiotherapy? Easier than chemotherapy but still feel tired too. My throat is dry too. (BCIG)

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Table 4. Participants

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Table 5. The Themes of the posts

Friends, it has been 10 days since I have chemotherapy and still muscle and joint pains and I am in phase 2, is it normal according to you? (BCIG) Anyone used Arimidex 1mg and what are the possible side effects? (BCIG)

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Hello I have read that walking is good for lenfodem. I try to walk regularly but should I move my arm with lenfodom or keep it up? I do not know that. I would be happy if anyone knowing this can share. (MET) Sharing information on doctors and/ or health institutions is seen more in the comments through questions and recommendations on a “good doctor,” “good hospital”: Friends, do you know a doctor who is very experienced on bone metastasis? Can you help? Thank you. (BCIG) I am at Hacettepe hospital now. For your information, Dr. Kadri opened his private clinic. He is a very good doctor.(BCIG) This can be seen as solidarity in an increasingly commercialized health sector in the neo-liberal age. Other issues besides good doctors include the attitude of “some doctors,” differences between the doctors and their treatments, the operation of the health system and the treatments: Their approaches are not good, rather than supporting, some of them ruin people. (MET) I do not understand these doctors. They keep replying vaguely. It would be better if they spoke in a more clear and understandable way. Some keep testing us and change the medicines during chemotherapy while my doctor has not done tests for months, claiming that the real results will be revealed when the therapy ends. What if it does not work? I think they just have the mentality as if we were already dead 😪 crazy questions in my mind. (MET) The doctors act according to their own wishes. I asked why are you not doing any tests even though this is my second cancer? Then he asked for a BT test… One of the doctors said ‘You are reading too much into this.” I said yes. I experienced the second cancer even though I was being monitored by 6 doctors. Whoever gets a doctor’s diploma, they just think that they are the emperors. (BCIG)

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Hello friends, my mother’s liver has metastasized according to dynamic MR, not the Pet one. Anyone experienced that? What kind of treatment do doctors recommend in this situation? They told us that she can have an operation but we could not be sure because of lesionsbeing small. She was about to have therapy on her breasts but doctors are divided. Some say yes to that, some say no. We are in between in every sense. (BCIG) Do not believe in the lie of chemotherapy. People are used as an experiment…damnation on this world… damnation to such doctors. (BCIG) Chemotherapy is nothing but torturing the body. Other than lenfoma and lecomia, surgical operation and radiotherapy is sufficient. More is commercial profit. (BCIG) Such critical remarks are responded to in these groups. The participants underline the importance of trusting doctors and not worrying excessively.

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Sharf (1997) observed a Canadian online discussion group, Breast Cancer list, and analyzed the conversations that took place. According to these, women tend to explain their own thinking, decisions and experiences and are very careful not to make direct recommendations (p. 74). Sharf shows the influence of gender on the communicative style and argues that the women’s culture generated through these interactions appears to have resulted in a style and sensibility of communication characteristics of female dominated talk in other settings. Hardly any postings go without some form of acknowledgement, and most often encouragement. The often-cited practice of “flaming,” i.e., making rude or abusive remarks of others, is not generally found in women-dominated discussion groups, this list being no exception. (p. 76) Despite this, she also mentions that sometimes “hurt and anger are expressed” and gives examples. In the Turkish research discussed in this chapter, even though the style is also based on respect and understanding, there are a few aggressive posts. What is especially striking in the example here is that it comes from a moderator. She reacts to a member attempting to post an alternative herbal treatment:

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Friends please forget about this or that herb thing…I deleted a comment now…This or that person suggests something on his page blah blah…Do not do it for god’s sake. We are fed up saying this but you are in mostly cyber money traps. We do not read what is written here. If our friend who wrote this had read it, she would not suggest that this!!!!!!!! I know the gentleman she recommended from Istanbul. Do not do it for god’s sake. Do not believe in everything in cyberspace and believe in and run into it. THESE MEN HAVE SUCH A LIFE WITH THE MONEY THEY EARNED FROM US, YOU SHOULD SEE IT... YOU CAN GET ANGRY AT ME BUT THOSE WHO SPEND TIME IN THESE CYBER TRAP PAGES AND SPEND MONEY ON THIS OR THAT HERB I WILL CALL IGNORANT…Enough is enough. Whatever you call me, it does not matter. You will kill yourself not because of cancer but by running after these foolis things…NOTE: My dear, who is full of consciousness, these words are not aimed at you. (BCIG) 1 It is interesting to see that cyberspace is conceived negatively here even though the current conversations and interactions take place in cyberspace. Sharf’s (1997) article has several quotations from husbands or partners of cancer patients in the list, rather different from the groups in Turkey, where gender inequality is a big issue. There are no husband or partner interactions or questions within the groups. In fact, there are only two men members in the two groups. What are seen generally are questions, if not from the patients themselves, from female relatives of female patients. Most of the time these are daughters of patients. Like child care, support for patients, both physically and psychologically, is seen as the responsibility of women in Tukey. Social class is also an important parameter, and, while richer families may employ a nanny, for those households where women have to work, this responsibility is taken by the grandmothers, at least until the nursery age of 4. Thus, supporting ill health in a family can vary according to gender roles in the society. Another thing which can show gender inequality is that sex and the changes in their own or their partners’ sexual desire are the issues women openly talked about in Sharf’s research (Sharf, 1997, p. 77). In the research here, however, sexuality seems taboo among participants. It is not a prominent issue being debated. Doctors never talk about this (sexuality). If you do, they treat you, like, be grateful that you are alive, that is it (MET).

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The patient who makes this statement but does not talk about this issue either. In some cases, emotion was preferred over sexual relationships … when you are ill, just knowing that your husband is next to you. That is enough. Believe me. There isn’t anything like sex in a cancer patient’s life. A least this is the case for me. All I want is to put my hand on a shoulder, nothing else. (MET) The issues on the implications of the illness are covered mostly with the changes in their bodies (hair loss, menopause) and changes in social, professional and emotional lives. Their reactions to the changes in their bodies are related to the society’s reactions, to the extent that these patients are discriminated against in society. It has been already a month since chemotherapy ended. Enough. Let my hair grow again. It is as if it would ever grow again 😕. (BCIG) People stare at me so differently. Since I have to work, I started using a wig. When I told them of my illness, they treat me as if I was with Leprechaun’. To which the reply comes: Unfortunately, they are ignorant. If they knew, they would not behave like that. They can understand one day when/if their relatives experience cancer. (BCIG) I wish they would understand us and not be scared of our masks rather than escaping from us. ( BCIG) They are so pitiful and ignorant. They do not know that the masks are to protect us from microbes. (BCIG) Another problem that the participants complained about is that public opinion is dominated by cancer awareness and early diagnosis while ignoring the differences in cancers and treatments.

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Newspapers and television channels keep praising heroes and success stories and they do not mention metastatic breast cancer, which needs ongoing treatment…. Illness can change according to people, so can treatment methods. (MET) Besides sexuality, there are also few posts on alternative treatments. This could be related to the warnings within the groups about people exploiting patients commercially. Some religious prayers or rituals are also occasionally seen in some posts and do not receive negative comments. For example: A friend of mine sent me a prayer and said that she believed in it. I have not started yet. Starting tomorrow. I wanted to share it with you too. As you know we are doing whatever comes to mind: herbs, alternative medicine and so on. It is up to you. It is a matter of faith. I am going to do it. What do they say? Whoever has hope has everything… Pray for 7 days, 7 times to water and drink that water. Total, 49 prayers. To renew cells. If especially cancer patients drink, they will find their cure with the permission of God. It 428

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has been tested. Whoever can, should do it for a cure. Not necessarily just cancer patients. No harm in renewing our cells and becoming healthier. (BCIG)

The Process of Seeking Social Support The social support mechanisms in groups can be listed as seeking information; providing information; creative content and creative expression on gratitude, friendship and thankfulness; and personal experience and empathy. The main mechanism, seeking/providing information, differs in both groups: While seeking information is considerable (67.6 per cent) in BCIG messages, the rate is lower (13,8 per cent) in more advanced MET group. Patients are the majority of information seekers on illness-related matters (diagnosis, treatment, alternative methods, health experts and institutions) (95.4 per cent). As mentioned above, questions are mostly used in information seeking: Good morning friends. Does tamoxifen lead to an increase in vaginal discharge? (MET) I received chemotherapy 5 days ago. I have unbelievably bad nausea. Medicines do not stop it. What can I do? I could not sleep last night. (BCIG) Is there anyone who is diagnosed first with bone metastasis and yet had an operation? (MET) Table 6. Type of social support

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In fact, what are sought are experiences rather than medical information: Hello. Anyone get flu during the process of chemotherapy? What did you use as medicine, can you share? (BCIG) Anyone had a nipple done? Satisfied? (BCIG) The second mechanism is providing information on illness, which is seen more in the MET group where group administrators and moderators are more active. Social support is an altrustic, multi-dimensional phenomenon with therapeutic effects, as Shaw et. al (2000) reveal in their research. According to them,

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as a dynamic process, social support involves a consistent progression from a position of receiving support to that of giving support. Helping other patients allowed women to “change their focus from a preoccupation with their own sickness to thinking of others” (Shaw et.al, 2000, p.?): Since vomiting and nausea decrease sexual libido, here is some non-pharmacological advice: Avoid heavy meals, avoid synthetics and wool, wear cotton and light clothes in order to reduce high fever, avoid high temperature; decrease tea and coffee consumption; do relaxation exercises; have a warm shower before going to bed. (MET) For the Attention of Chemotherapy Patients! Do not abandon everyday life. Do not accept yourself as someone whose life is being limited; try to continue your everyday life as much as you can. If you or your family prepare a patient’s bed with the idea that “there is a patient at home” and see visitors all day in bed in your pyjamas, you could have a lot of trouble in the treatment process. (BCIG) Hello. I am going to share useful information I have just learned. If you live in a place far from the hospital where you get treatment, the state will reimburse your and your companion’s travel expenses. What is needed is to have approval from the doctor and give them the document…The main difficulty is having to repeat this every time. (BCIG) Sharing creative content and expressions of gratitude, thankfulness and friendship through photos, visuals, memes and poems is another kind of social support. For example: The year of 2016 has been both sad and happy for my mother and myself. We have overcome so many things together. Our active hospital adventure since April ended today There will be check-ups after this. I would like to thank you all. (BCIG) Another social support mechanism, sharing personal experience and empathy mostly come from patients (56.7 per cent):

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Hello friends, I am following all of you and your problems from a distance. You are always worried and anxious. Relax. Behave as if the problem did not exist. I applied this to my own struggle. Today was my check-up day. My results are clean. I won this war. It is your turn now. Do not ever limit your social life. Have a little happiness. I did that and I won. I wish that the new year gives all of you health, happiness and peace. Get well soon. Love. Kisses. (BCIG) I shared my biopsy results almost 3 weeks ago. The results are clean. Everything is OK… I would like to thank each of you for you good wishes and prayers. I wish from my God that you all will regain your health. I wish God will give all of us long and healthy lives. 😊😊 (MET)

SOLUTIONS AND RECOMMENDATIONS The analysis will be discussed here under who shared and what; how the illness and the struggle are being signified; and the mechanisms of social support. The two groups that were analyzed have 221 430

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 Social Support Through Digital Media?

posts from 100 users. Even though the numbers of the members of the groups differ, the number of total posts is similar. BCIG has 4167 members and has 47.5 per cent of the total number of posts analyzed while MET has 764 members and has 52.5 per cent of the posts analyzed. In relation to the number of members in both groups, the number of those who actively post is extremely low (1.7 per cent) while 98.3 per cent of members are just lurkers, following the posts and sometimes contributing via comments and likes. This low participation in active use can perhaps be explained by the fact that users have an illness process that is lasting and has destructive effects and are therefore not regularly active. They write when they are in need. In accordance with data that shows that online social support groups in general are mostly used by women (Van Uden-Kraan, 2008, p 33), the groups’ users in this research are, as breast cancer patients, predominantly women (98 per cent). That only two men are members of the groups could be considered an extension of gender inequality. The finding that women users are mostly patients (71 per cent, while 7 per cent are patients’ relatives) shows that the treatment period is the time when the patients need information the most in the whole process. Half of the users are young (53 per cent) while just 3 per cent are 65 years and above. Use of the Internet and social media by the elderly is low, although increasing in recent years in Turkey (TUIK, 2016). Illness is painful not only for the patient who carries it in her body but also for her family, relatives and companions around her. The illness changes the perspective on life and death; the flow of everyday life; the relationships with the people and institutions. Thus, patients question their everyday life, their approach to different spiritual worlds and meaningful life and seek various types of social support. The type of online illness group analyzed in this chapter is one of these. Online social support groups provide a new social sphere for patients and their relatives through which the illness, the “correct” treatment, the side effects of medicines, alternative medicine, doctors and hospitals are discussed and many questions, replies and comments are listed. Nineteen per cent of the posts are conversations and chats unrelated to the illness. These kinds of conversations are important to help develop trust and friendship. In Van Uden-Kraan’s (2008, p 10) research, 50 per cent of the posts are like this. In Turkey, the major topics are the illness (65.2 per cent) and the results of the illness (15.8). The most common use of social support within the groups is to gain information (39.4 per cent) or to give information (31.7 per cent). Sharing personal experience is the subject of only 13.6 per cent of the posts in the groups. Research elsewhere revealed a striking difference in that sharing personal experience and empathy were high while seeking medical information was low (Van Uden-Kraan, 2008, p 34). This shows that in Turkey the priority is gaining information, which suggests that patients and their relatives are in need of medical information that is not provided sufficiently by medical institutions. According to criticism from patients’ and doctors’ organizations, as a result of changes in the health system, doctors can now spend less time with their patients. During a very short appointment, doctors must examine the patient, suggest and prescribe treatment and give information. This can only lead to a big communication problem between doctors and patients; there is insufficient time to ask any questions and get a satisfactory reply (Medimagazin, 2015). It is not only a matter of the time limit but also the whole mentality of health professionals, as was discussed earlier in the chapter. It should also be mentioned that there is a problem of quality of information being shared within the groups. The information provided is based on the experience of patients or the page administrators who do not have a medical training. Only 3 per cent of members of the groups are health professionals. Having said that, the groups are important for the patients, as this post expresses very well:

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It is full of friends here, “fate” friends who worry about each other, pray for each other and share recommendations. (BCIG) For breast cancer patients, being alive means a “struggle.” The treatment process is likened to a “war” or, sometimes, a “dance.” The patients are seen as people who have succeeded in this process: the struggling “amazon,” the “miracle” women. I will not collapse but collapse anything that can collapse me. (BCIG) Please do not stop praying. We do not know what is waiting for us. However, we are strong and believe that we are going to be fine. (BCIG) I won this war, it is your turn now…. (BCIG. We are all miracle women. Powerful, patient and, whatever happens, hopeful. (MET) The most important thing is to be strong and to “love yourself.” This is recommended by the members very often: Do you love yourself? Do you respect yourself and your body? Do not forget. If you do and you care for yourself, the people around you also treat you in the same way. (MET) My doctor once told me that breast cancer loves beautiful women. We will beat that beauty!!! And it will never come back !!! (BCIG). Death is spoken of very little within the groups. While sharing condolence messages after a person has died, there were comments showing the banality and ordinariness and even God’s judgement of death. Continue to live. Death is for all of us. Many people die every day because of many silly reasons such as an accident or explosion. Simple reasons. Like that, suddenly. Right? Then it is not worth worrying about anything at all 😄😄. (MET)

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Believe me ladies, when I first heard…I said OK everything is over, but I understood that I am not scared of death anymore. Everything is the judgement and the decision of God. All we can do is the duty to take sufficient care and carry on treatment. (BCIG) Hello, my name is human…You can be called cancer…a big trouble…but you cannot harm anyone as long as my big GOD does not want it to…we get our treatment and pray. We are not scared of you. (BCIG)

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FUTURE RESEARCH DIRECTIONS The on-line support groups reveal new alliances and commonalities which would not have come together previously. There is a lack of a rights-based approach to health or a holistic conception of health, thus no politically engaged and activist participation. Still, there is a potential of transformation in and via these groups. For example, one member shares a petition which took place at change.org ‘Let’s Sign for a World without Cancer’ to stop extra payment to the private hospitals for cancer patients without private insurance. Further study could conduct face-to-face individual and focus-group interviews with the women patients to try to deepen the understanding of their experience. The findings of such a study would give a chance for the voices of the patients to be heard by medical professionals, activists and health policy makers and create a potential transformative change in the violating, oppressing or discriminating structures and practices at different micro and macro levels, such as the state, the market, the media and/or are reflected by each individual member in society.

CONCLUSION The aim of this research is to analyze the characteristics of the posts and comments being shared on Facebook group pages established to support breast cancer patients and their relatives, friends and companions. It can be argued that the on-line social groups will increasingly gain more significance and popularity due to the problems in accessing information in the current health system in Turkey. Further research, taking into account the socio-economic, age, gender and cultural dimensions, is needed to understand the patient groups who come together in these spheres.

REFERENCES Ayvaz, T. (2016, January 29). İnternet ve Sosyal Medya Kullanıcı İstatistikleri 2016. Retrieved from http://www.dijitalajanslar.com/internet-ve-sosyal-medya-kullanici-istatistikleri-2016/

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Bender, J. L., Katz, J., Ferris, L. E., Oh, H., & Jadad, A. R. (2013). What is the role of online support from the perspective of facilitators of face-to-face support groups? A multi-method study of the use of breast cancer online communities. Patient Education and Counseling, 93(3), 472–479. doi:10.1016/j. pec.2013.07.009 PMID:23928354 Eisenlauer, V. (2014). Facebook: A multimodal discourse analysis of (semi-)automated communicative modes. In C. Maier & S. Norris (Eds.), Interactions, Images and Texts: A Reader of Multimodality (pp. 309-317). Berlin: de Gruyter. Fogel, J., Albert, S. M., Schnabel, F., Ditkoff, B.A., &Neugut, A. I. (2002). Use of the Internet by Women with Breast Cancer. Journal of Medical Internet Research, 4(2). Keyder, Ç. (2007). Giriş. In Ç. Keyder (Ed.), Avrupa’da ve Türkiye’de sağlık politikaları (pp. 7–35). İstanbul: İletişim Yayınları.

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Klemm, P., Bunnell, D., Cullen, M., Soneji, R., Gibbons, P., & Holecek, A. (2003). Online cancer support groups: A review of the research literature. CIN: Computers, Informatics. Nursing, 21(3), 136–142. PMID:12792194 Klemm, P., & Wheeler, E. (2005). Cancer caregivers online: Hope, emotional roller coaster, and physical/ emotional/psychological responses. CIN: Computers, Informatics. Nursing, 23(1), 38–45. PMID:15622203 Medimagazin. (2015, October 26). Hastalar muayene sürelerinin kısalığından şikayetçi. Retrieved from http://www.medimagazin.com.tr/ana-sayfa/guncel/tr-hastalar-muayene-surelerinin-kisaligindansikayetci-1-11-67485.html Myrick, J. G., Holton, A. E., Himelboim, I., & Love, B. (2016). # Stupidcancer: Exploring a typology of social support and the role of emotional expression in a social media community. Health Communication, 31(5), 596–605. doi:10.1080/10410236.2014.981664 PMID:26453480 Sağlık Bakanlığı (MOH). (2014). Türkiye Kanser İstatistikleri. Retrieved January 13, 2017, from http:// kanser.gov.tr/Dosya/2017Haberler/2014-RAPOR._uzun.pdf Sharf, B. F. (1997). Communicating breast cancer on-line: Support and empowerment on the Internet. Women & Health, 26(1), 65–84. doi:10.1300/J013v26n01_05 PMID:9311100 Shaw, R. B., Mctavish, F., Hawkins, R., Gustafson, D. H., & Pingree, S. (2000). Experiences of Women with Breast Cancer: Exchanging Social Support over the CHESS Computer Network. Journal of Health Communication, 5(2), 135–159. doi:10.1080/108107300406866 PMID:11010346 Shpigelman, C., & Gill, C. (2014). Facebook Use by Persons with Disabilities. Journal of ComputerMediated Communication, 19(3), 610–624. doi:10.1111/jcc4.12059 Steinfield, C., Ellison, N. B., & Lampe, C. (2008). Social capital, self-esteem, and use of online social network sites: A longitudinal analysis. Journal of Applied Developmental Psychology, 29(6), 434–445. doi:10.1016/j.appdev.2008.07.002 Terzioğlu, A. (2011). Küreselleşme, Kanser ve Hastalık Anlatıları. In C. Özbay, A. Terzioğlu, & Y. Yasin (Eds.), Neoliberalizm ve Mahremiyet Türkiye’de Beden Sağlık ve Cinsellik (pp. 111–132). İstanbul: Metis. TUIK. (2011). Hanehalkı Bilişim Teknolojileri Kullanım Araştırması, 2011. Retrieved January 3, 2017, from http://www.tuik.gov.tr/PreHaberBultenleri.do?id=8572

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TUIK. (2016). Hanehalkı Bilişim Teknolojileri Kullanım Araştırması, 2016. Retrieved January 3, 2017, from http://www.tuik.gov.tr/PreHaberBultenleri.do?id=21779 Van Uden-Kraan, N. (2008). Online Peer Support for Patients with Somatic Diseases (Thesis). University of Twente. Retrieved January 12, 2017, from http://purl.utwente.nl/publications/60136

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KEY TERMS AND DEFINITIONS Alternative Treatments: These are treatments which may be used widely but are not accepted by the existing medical authorities. Emotional Empathy: The ability to understand what another person feels during their illness. Emotional Support: The provision of reassurance, acceptance, and encouragement in times of stress. It can have a healing effect on patients, especially on cancer patients. Informational Support: Sharing information from one’s own experience or from various resources (doctors, books, the Internet, newspaper, magazine, brochures). Stigmatization: Patients feeling excluded as a result of the discriminatory reactions in society.

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This research was previously published in Global Perspectives on Health Communication in the Age of Social Media; pages 85-106, copyright year 2018 by Medical Information Science Reference (an imprint of IGI Global).

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Chapter 24

Exploitation of Health on Instagram: Motivations, Social Support, and Influencers Michael G Blight North Central College, USA

ABSTRACT This chapter focuses on the exploitative nature of Instagram as a community-based platform. Individual users build, maintain, and participate in communities as a way to connect with experiences and insights that resonate with them. Because users are motivated by different gratifications and are met with social support along the way, brands can use influencers to exploit the community-based practices (i.e., liking, sharing, and curating content) to access a variety of data points from users. Ultimately, users’ data is routinely at risk as a byproduct of this subversive use of the platform.

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INTRODUCTION The contemporary experience of social media and interactions online can be best understood by examining platform uniqueness. The steady increase of social media platforms available – namely the meteoric rise of Instagram – creates a series of potential pitfalls. Instagram is a mobile, “photo and video sharing application” where users can upload and share their content with followers and/or with a selected group of friends (“What is Instagram?,” 2020). Followers can view, comment, “Like,” and share content as part of the phone application’s primary functionality. Superstar celebrities such as Cristiano Ronaldo, Ariana Grande, Dwayne “The Rock” Johnson, and Selena Gomez have each accumulated over 165 million followers on Instagram (Statista, 2020). Although celebrities boast the most significant follower counts, a significant portion of Instagram’s user base engages with less conventional celebrities often times referred to as microcelebrities or influencers (Abidin, 2018). In fact, many users gauge these influencers as being, “...more accessible, believable, DOI: 10.4018/978-1-6684-2414-8.ch024

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 Exploitation of Health on Instagram

intimate, credible and influential in the purchase behaviors than traditional celebrities” (Balaban & Mustãtea, 2019, p. 33; see also Djafarova & Rushworth, 2017). Instagram has evolved past its original use as a photo and video-sharing social networking service into a tool for community and social support. In particular, Instagram has become a platform for individual users and influencers alike to participate in health-oriented community building. Work by Muralidhara and Paul (2018) investigated the use of Instagram as a platform particularly conducive to sharing and disclosing health-related content online. The authors emphasized the value of Instagram as a platform by citing the wide array of topics that were discussed online including posts pertaining to diet, exercise, mental health, and substance abuse. A platform that was originally designed for sharing pictures of puppies playing on sandy beaches has organically developed into a safe haven for disclosures on significant health-related information. Given Instagram’s utility as a platform for sharing health-related content, there can be unexpected and worrisome complications pertaining toward users’ sharing of information online. Zhu, Ton, and Wang (2019) note that users’ disclosure of sensitive information may put users in harm’s way. Specifically, end-users (e.g., the individual account holders using the platform) are unknowingly exposing themselves to targeted advertisements as a result of their Instagram behaviors and collected data. As noted by Christina Farr of CNBC (2017):

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Unlike other industries, the pharmaceutical industry faces strict regulations on how it can promote its drugs on social channels. On Facebook, for instance, a drug company might target a person who has “liked” an advocacy page, or fits a certain demographic profile. But it would not be allowed to target ads to specific people based on a disease that Facebook knows or suspects they have. (para. 6) Instagram’s Terms of Service explicitly states, “[Users] might see ads based on the people you follow and things you like on Instagram, your information and interests on Facebook (if you have a Facebook account), and the websites and apps you visit” (“How does Instagram decide which ads to show me?,” 2020). Aside from the algorithms and hashtags that push content searched by users to their application, Instagram is especially conducive to satisfying individual gratifications. Uses and gratifications theory (U&G) suggests that media consumers are psychologically and socially motivated to select media as a means to satisfy individual needs and desires (Rubin, 1994). In the case of Instagram, users’ motivation to satisfy gratifications plays directly into the model of community-building. Viewers seeking to satisfy individual needs often participate in online communities without recognizing their data is being jeopardized. Individual needs are often sought and satisfied within these online communities. In the case of Instagram, the recurring topic of mental health directly intersects with that of social support. Advances in accessible communication technologies have provided users with the ability (or lack thereof) to build, maintain, and terminate relationships online. In many instances, these online relationships may be onesided (i.e., user observing conversations). Members of online communities may come together to support members despite frequently unidentifiable information (i.e., anonymous or unidentifiable membership). Users can appear as fast as they can disappear within online communities, leaving only an IP address trail behind, which creates a need to examine these online communities. To summarize, a platform such as Instagram has a number of core user-experience features that are designed to drive behaviors from users (e.g., “Likes”). These particular behaviors are underscored by individuals’ needs and desires that are often described as motivations via the uses and gratifications theory. 437

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The social components that Instagram offers are those of online community as well as the affordance of social support. Both provisions from the platform directly influence the platform’s ability to recruit and encourage repeated use. Certain brand ambassadors tap into the high demand of community as a way to further promote their individual brands as well. The objectives of the chapter include underscoring the potential exploitation of information on Instagram through four critical frameworks: (1) health topics, (2) the uses and gratifications theory, (3) social support, and (4) influencers.

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Background Although not exclusively designed for health and fitness, Instagram is a prime example of a platform that has a significant user-base that uses it for those exact purposes. More broadly, social media has historically been used as a vehicle to drive interest in health-related content and campaigns (Yoo, Kim, & Lee, 2018). Work by Santarossa and Woodruff (2018) found that users’ perceptions of the term, “health” on Instagram and Twitter favored images of physical activity (i.e., working out) rather than food (i.e., healthy meals). In other words, users on social media platforms often build up distinct associations between their understanding of health and wellness with overall health initiatives targeting them as viewers. There are a number of features that exist within Instagram’s basic interface that serve to entice users to continuously return to and use the platform. The imagery-first and text-second nature of Instagram is particularly important to note when discussing user behaviors and perceptions of use. Specifically, work by Blight, Ruppel, and Schoenbauer (2017) found that Instagram users turned toward the platform for information sharing within different online communities (e.g. disclosures for special topic areas). An important behavior worth noting with information sharing is how users become aware of the information that is being presented as they scroll through their timelines: pictures play an integral role in garnering the attention of users who are pursuing health-related information (Houts, Doak, Doak, & Loscalzo, 2006). In other words, users will often be alerted to information pertaining to health and wellness by sheer virtue of scrolling through their device – even if they are not intending to seek out explicit information. A key advancement within Instagram’s user interface is the presence of both information and imagery used in conjunction with each other. Specifically, health-related images on Instagram can have explicit messages embedded or included within the image as well as in the caption itself. One of the implications becomes how individuals use individual items such as captions as a way to provide further context to more than just the picture. The pictures or videos themselves are unique in that they can have actual text included in the post, but more importantly those pictures can have information that is worth investigating independently. The uniqueness of captions is that they have the ability to either supplement the image or act as a textual replacement. Work by O’Donnell and Willoughby (2017) emphasizes the importance of communicating salient health-related information with the photo itself rather than relying on the caption. That is to say, images play a critical role in the experiences of users. Much of the engagement features of Instagram (i.e., algorithms, hashtags, etc.) impact users’ experiences on the platform. In fact, the user interface is purposefully designed to present users with, “...the most relevant and potentially enjoyable experience” (Gerodimos, 2014, p. 100), while using the application itself. Users are inundated with information presented by other users, the applications itself, and are immersed in the overall communal experience while on the platform by viewing other users’ comments. These experiences culminate together to enrapture users into a perpetual pull from the application to continue

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use. The latter (e.g., sense of community) is exceptionally integral to understanding the reward structure that Instagram has put in place for users. The use of technology is vital to the proliferation of online communities and communal experiences surrounding shared interests. Porter (2004) notes that shared interests are governed in many respects by an established set of norms for individuals to abide by as part of the agreement of use. Often individuals decide to participate in specific behaviors (i.e., the posting and sharing of content) as a way to validate their sense of community membership (Chavis, Lee, & Acosta, 2008). Since many communities differ in scope, purpose, and community-member behaviors, there are various expectations of what a community member should do to solidify their main stake within any particular online community. Further, membership within the community is not always observable by traditional engagement (e.g., commenting and liking). In fact, Schneider, von Krogh, and Jäger (2013) note that many online communities have significant user bases that are “lurkers” (i.e., passive members who do not directly engage). Although lurkers do not participate in observable ways, their presence and exposure to the online communities is worth noting as they experience similar effects of online membership. By default, users opt-in to Facebook and use Facebook’s products (e.g., Instagram) that collect data used by third-party sites. To deny these permissions, users must go out of their way to edit their settings after agreeing to the terms and service of the product. In many respects, the data-driven nature of social media platforms is a byproduct of how, “…top executives, developers, marketers, and programmers think about the service and its purpose” (MacKinnon, 2012, p. 150). Moreover, it is the incentive of back-end developers to create an experience unique to Instagram to encourage further interaction with the platform (i.e., logging back in to interact). McChesney (2013) furthers the idea of purposeful executive-directed decisions by suggesting that firms (e.g., Instagram) purposefully invest in creating brands and advertising to “create the aura” (p. 43) surrounding these brands. One of the integral features or experiences presented by a platform such as Instagram is that of community.

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The Role of Online Communities Perhaps the greatest misnomer of community research is that individuals must be active and interactive when it comes to their participation within a community. However, the reality for many users is that they are onlookers who themselves do not curate content, do not create stories, and do not directly engage with other members. In fact, it is the case that individuals may not even directly engage with specific posts (e.g., click the “Like” button). Lurking and passive “participation” aside, online communities are especially useful given their ability to leave as quietly as one may have entered. In fact, work by Miller, Fabian, and Lin (2009) suggests that individuals may opt to disclose information online due to the affordance of being able to leave the platform due to anonymity. The flexibility of these networks in comparison to traditional face-to-face relationships allows online communities to thrive even when individuals are not participating in conventional ways (i.e., communicating with others within the community). All of that noted, Instagram still collects user behavior data in terms of which profiles are viewed as well as how individuals search key terms and phrases; therefore, participation in these communities is potentially misleading. This notion of community behaviors forces researchers to reimagine what participation looks like in terms of being a member of the community. Certainly, there are ancillary benefits to being a member of the community, such as satisfying interactive gratifications. However, the need to directly interact is not a predecessor nor a necessity for overall community engagement. Instead, when we think about 439

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this idea of passive participation, individuals are still satisfying different gratifications. Perhaps what’s most important to think about is how individual gratifications are correlated to individual participation levels. Entertainment may be derived or earned strictly by viewing specific content within a community or subgroup. Communities also rely heavily on idiomatic communication, which is specific language, jokes, and expressions specific to the participating members (Knapp, Vangelisti, & Caughlin, 2014). Work by Sherlock and Wagstaff (2019) specifically examined Instagram as a platform wherein users viewed specific “fitspiration” content as it pertains to idealized body types. As the authors note, the term “fitspiration” is an “amalgamation of the words fitness and inspiration” and is a term used commonly as a “motivation for others to pursue a healthier lifestyle” (p. 483). To bridge the work of Knapp et al. (2014) and Sherlock and Wagstaff (2019), the idiomatic communication principles combined with community-specific language makes for a critical component of online research. More importantly, data surrounding specific keywords - in this case fitspiration - makes isolating specific data points a volunteer process by users. Viewership data and other important data points (i.e., likes, shares, comments, specific hashtag use, etc.) are being collected by social media platforms. Even if a user is not “actively” participating in an online community (e.g., directing interacting with the content via likes, shares, or comments), their data is still being collected. Even though the individual may not want to participate in a conventional fashion as a communicator, or as somebody who is engaging in community, that is not to say that their privacy data is somehow safe. Specific subsets of communities make it possible for brands to target keywords, phrases, and activities as a tool to better market their product to a community. Brands who position themselves as keen on fitness (i.e., fitness apparel companies) can isolate these specific messages as a mechanism to target their end-user. Work by Simpson and Mazzeo (2016) further investigated the phenomena of fitspiration, noting that exposures to fitspiration messages may be problematic for users with a heightened risk of eating disorders. Highlighting the potential for detrimental experiences for viewers underpins the cyclical nature of platforms such as Instagram: individuals self-select to view specific content, the content then begins to generate more routinely in the user’s timeline, and the cycle continues onward. Repeated exposure to these messages results in continued targeted messages from within communities who use specialized terms and phrases. It is worth noting, however, that there is nothing that forces users to directly view content and participate in all of the communities that are remotely related to each other. Having these functions split content into separate communities is beneficial to users as they are not forced to engage with specific content. Perhaps more importantly, individuals must recognize that their overall feed of the content that they view themselves is a direct result of their viewership behaviors, which is influenced by the hashtags that they use, and their use of the platform overall. In the case of public profiles, Instagram’s API and other related third-party tools can gather information (i.e., content that is written within the text of a post) as a means to locate all information surrounding a particular topic. Information available on public accounts (i.e., comments, likes from users, etc.) can be gathered for a variety of different purposes. If an organization or brand was to look at specific keywords or phrases, (i.e., fitspiration) they could in theory utilize all of the available data points via the API. Although not all rules and expectations of community participation are explicitly laid out, there is often an implicit expectation of social interaction within online communities (Wu, Wang, & Tsai, 2010). Therefore, online community participation is deeply embedded within the fabric of relationship building and the social currency of membership. To make matters more complicated, users who seek recognition

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for their membership within these communities are forced into curating content in the same model and aesthetic of others within the communities.

FRAMEWORKS AND COMMUNICATION ONLINE COMMUNITIES Health Topics

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Health topics - including physical and mental health - are prominent fixtures within social media usage. In particular, college users aged 18-to-30-years-old often turn to social media as an outlet to discuss health topics (Prybutok & Sherry, 2015). In addition to finding out information pertaining to health-related topics, social media can serve as a valuable tool in both risk management as well as disease prevention. These important features surrounding health and at-risk groups underscore an important consideration: keywords and talking points as a data point being collected and potentially targeted. Online communities provide a resource base for individuals to participate in disclosures online. With the advent of technology in particular social media platforms, individuals are now granted a unique affordance to post content online about their own mental health journeys. A variety of hashtags exist, including #mentalhealth and #depression. Specifically, searching #anxiety provides all user-generated content for individuals who have self-selected to use that explicit word. Research by Paige et al. (2015) suggests that imagery that includes people experiencing health-related challenges garners a greater likelihood of user engagement with the social media post. Further, the research by Paige et al. found that infographics (much like that of real people) generated more likes on the platform Pinterest than other visual communication tools. In short, the presence of perceived “real experiences” and information rich content (i.e., images combined with textual information) plays a critical role in the experience of users. The presence of particular hashtags makes it so that users can identify the sheer volume of content that is being promoted within their networks. There is an inexplicable nature where an individual may feel a sense of reciprocity to participate in their own mental health struggles, which further creates a vicious cycle of content creation. Although the symbiotic relationship of having access to technology to post content and wanting to post content are very interdependent, Jong and Drummond (2016) note that individual users who disseminate health and fitness-related messages are obligated to follow normative posting behaviors involving proper health practices. That is to suggest that users’ experience of reciprocity plays an important role in the way individuals not only post content, but also must post the appropriate content given the standard established within communities. Moreover, the search function for specific health-related topics directly connects to the gratifications that users may be seeking as users on Instagram.

Uses and Gratifications The uses and gratifications (U&G) theory and approach is born out of media effects research that sought to understand which types of content satisfied the social and psychological needs of viewers (Cantril, 1942). Papacharissi and Mendelson (2011) describe seven gratifications as follows: relaxing entertainment, expressive information sharing, escapism, cool and new trend, companionship, social interaction, and habitual time pass. Each category highlights different gratifications that individuals may seek to satisfy with media use. In other words, individuals will seek out a specific media (in this case: Instagram) to 441

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satisfy their needs as driven by individualized motivations. These motivations are subject to change at any moment; however, the fulfilment of gratifications is not a one-off experience. That is to suggest that while gratifications may ebb and flow, the use of technology remains consistent. Moreover, membership within communities does not require a specific number of posts and engagement experiences (i.e., “Likes”) as an eligibility tool for membership. Components of the U&G approach including entertainment and time pass (i.e., scrolling through a device while bored) have been found to be strong predictors of social media usage (Coursaris, Yun, & Sung, 2010). Users have the affordance to tap into online communities as a bountiful resource of entertainment pertaining to their specific subcommunity. Additionally, Malik, Dhir, and Nieminen (2016) found sharing behaviors online (i.e., posting to social media) were positively related to gratifications such as attention seeking and information sharing. All of that is to suggest gratifications often play an important role in the ways individuals utilize their technology on a day-to-day basis. Aside from passing the time between activities, technology provides an avenue into a distinctive experience as provided by online communities. Social media provides a novel mechanism for satisfying a variety of gratifications. In particular, work by Jung, Youn, and McClung (2007) notes that communication tools embedded within platforms (e.g., direct messaging and sharing content) provide users with the ability to actively seek out gratifications. Other prominent features include enabling notifications for specific accounts as well as following specific hashtags. Given that a core feature is communication between users, it is important to note that users are able to satisfy their own gratifications as well as the gratifications of others. More specifically, work by Lee and Moon (2015) highlights a critical component of Instagram’s user-generated images: the building and maintenance of social interaction with others. Lee and Moon (2015) found that Instagram users are primarily motivated by social interaction and self-expression. The conundrum of user-generated content grows more complex as users turn to Instagram to express themselves through explicit data-retrievable information in their curated content. Perhaps more problematic is the interpersonal connection as garnered through social support on Instagram.

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Social Support Individuals who utilize Instagram as a platform to reduce anxiety and the experience of isolation regarding mental health are being exploited for their social support seeking behaviors. Specifically, social support has been defined using a variety of components including encouragement, guidance, advice, assistance, and expressions of affection (Leung & Lee, 2005). Individuals may use Instagram as a means to provide social support surrounding negative hardships they are facing (Virtanen & Isotalus, 2011). Goldsmith, McDermott, and Alexander (2000) found that discussing stressful situations and receiving social support can aid in coping. Given the sensitive topic of mental health, individuals may look to replicate the behaviors of accounts that they follow as part of a larger social experience. These behaviors, however, are made while looking past glaring concerns surrounding their sharing of their own private information for the reward of social currency (i.e., companionship, social interaction, and trendiness). In order to stay up-to-date with the others’ journeys, individuals must operate within the core function of a platform such as Instagram (i.e., “Liking” pages and sharing stories). Corbitt-Hall, Gauthier, and Troop-Gordon (2019) discuss the importance of Facebook for users expressing thoughts of self-harm. Their research suggests that positive comments and support play a critical role in suicide prevention efforts (i.e., preventing self-harm). That is to suggest online communities play a vital role in the health of 442

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users; however, targeted advertisements may identify topic areas (i.e., mental health) and hashtags (e.g., #mentalhealth) to promote specific products. Following specific pages that focus on mental health and depression puts users at risk of being preyed upon by brands who are looking for potential customers in their targeted advertisements. One of the guiding principles within this chapter is that individuals are motivated to satisfy a variety of different manifestations. Based on how they use a media channel, a limitation of examining motivations is that individuals have access to social support online. Moreover, it is not the case that all social support is experienced by individuals the same way, which is reinforced by Corbitt-Hall et al. (2019). Work by Ridings and Gefen (2006) found that information exchange is a key factor to participation in virtual communities. Building trust within online communities directly influences a users’ willingness to disclose information. Moreover, the comfortability with disclosure puts users’ information at risk as they begin to share more individual details. Further, individuals are satisfying unique gratifications while simultaneously disclosing information online. Seeking out social support may be a daunting task for individuals in an offline environment. Individuals experiencing the need to belong to a group or community may find solace in readily accessible online communities (Tanis, 2008). The internet provides users with seemingly endless possibilities of new groups to associate with. More importantly, computer mediated communication allows users to enter and leave communities through unidentifiable information in many circumstances (e.g., a username disassociated with the individual’s true identity). As a result, users can experience temporary association with a group (i.e., feel connected to the information exchanged) before determining to investigate the community further or search for other communities. Users have the ability to jump between different groups of social support; however, rituals, behaviors, and norms may differ across groups. While having the ability to locate a new group may seem enticing, the sheer volume of available groups and participating members may deter social support seekers from participating. Users may feel isolated and experience lowered social support if the size of the group is too large (Rains & Young, 2009). Building rapport within an online community frequently takes time, which makes seeking immediate support less likely. Users might begin to recognize names or handles of frequent posters, or even gain recognition themselves for contributions to the community. Users may also decide to utilize direct messaging features within certain online communities to establish more intimate relationships. Within online communities or with pre-existing friends, social support seekers may have the ability to use direct messaging as a tool for alleviating stress or tension. In fact, instant messaging can be used as a tool for distressed users to improve negative emotional states (Dolev-Cohen & Barak, 2013). Growth with communication technologies allows users to have readily accessible instant messaging with preferred social supporters if face-to-face interactions are not preferred or as useful to the user. Scrolling through pages of forums looking for content to relate to might not translate into the experience of social support, which makes direct lines of communication potent between users. It is important to note that the quality of support seeking interactions may be more important than the frequency of social support seeking (Oh, Ozkaya, & Larose, 2014). Users that have an already established social support system may turn to offline interactions as an alternative to other online communities. Network overlap may prove useful to individuals who use personal social networks as a resource for social support seeking. Social networking sites offer users an additional channel of communication with interpersonal relations. Individuals are not bound to use face-to-face or computer-mediated communication but instead a combination of the two to gather support. Instead, individuals’ communication competence helps to dictate the satisfaction of both face-to-face and Facebook social support (Wright et al., 2013). 443

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Individuals can use a pre-existing set of acquaintances for social support, or an online community of unknown users posting on similar topics. Regardless, it is critical to have access to more communities than less, so that users can seek out the support that is the most comfortable to them. Users may have a multitude of social support providers available including offline relationships, online relationships, online communities, and even connections to community leaders such as influencers.

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Influencers As part of the ever-changing landscape of digital media, influencers are prominent members of a specific industry or niche. Perhaps more importantly, influencers have “sway” over specific members of the community. When an influencer posts content on the internet, an individual may view that influencer as an integral or focal part of the community. In fact, many communities are formed strictly to idolize or follow the happenings of the influencer specifically. When an individual views their own membership or ranking within the community, they will use other members as a litmus test to see what engagement and proper behaviors look like for membership participation. Specifically, the frequency of posting is almost a direct result of how committed an individual feels, or how they display their commitment to the community at large. In comparison to a community member, influencers act as the figurehead or the individual who is at the forefront of different communities. In many regards, influencers hold a great deal of power when it comes to persuading or influencing the different members of their communities. Additionally, the ability to sustain a community may be hinged upon the influencer further establishing their clout and creating a precedent for anticipated content. Influencers have the ability to curate a specific image that provides engaged users with a potentially misguided sense of kinship with the influencer. A critical component of the influencer concoction is that of users perceiving the influencer as “one of us” (Balaban & Mustãtea, 2019). Because users are compelled to adopt participatory behaviors (i.e., copying the influencer’s type of posts), there is an unfair burden that is placed upon community members due to the lack of equitable response to curated content. In other words, when influencers post content, there are very distinctive rewards including financial motivation, brand awareness, and more. When a user sees these participatory behaviors and decides to emulate them, the only digital currency acquirable is that of the adoration of the other community members. As an example, an influencer may determine they want to post information about a specific health topic for the week. Members of the community may look at that post and try to reproduce the work of the influencer. As a result, over time members of the community behave and act in accordance with the influencer, which creates an overall aesthetic and template for what normative behavior within the community may look like moving forward. As a result of this, what ultimately ends up happening is that influencers directly impact the tone, the pitch, the volume, as well as the overall framing of the communication and behavioral patterns of other individuals who seek to replicate the influencer’s content. This is particularly troubling, considering that influencers have amassed hundreds of thousands if not millions of users who follow their profile. One of the other core features of Instagram is the “Stories” feature, which has been adopted from the original use on Snapchat. Instagram modified Snapchat’s architectural design by adding unique features including the ability to post permanent content that appears on a profile, as well as having stories that disappear over a fixed period of time. Moreover, a significant consideration with these stories is how the individuals are able to curate different forms of content that have a different shelf life. One of the 444

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curiosities when it comes to this different shelf life is how individuals feel the necessity to share their content and categorize information in different ways. Individuals use these digital tools as a mechanism to establish social comparisons with one another (Vogel, Rose, Roberts, & Eckles, 2014). Stein, Krause, and Ohler (2019) explore Instagram as a platform for young users to establish a sense of body image based on information observed. The combined works of Vogel et al. (2014) and Stein et al. (2019) suggest that users are using the platform as a mechanism to draw individual comparisons based on information presented via Instagram. Instagram has a policy wherein an influencer must explicitly state when they are promoting a product (e.g., #promoted or #sponsored). However, despite the sponsored posts being identified, oftentimes it is the job of brands or brand ambassadors to recognize if the product itself that they are suggested to promote actually aligns with the overall brand strategy of the influencer. This suggests that there should, in theory, be alignment between what the influencers community participates in, what their interest levels are, and the actual sponsor products themselves. In some of these cases, influencers are purposely targeted to curate content and share posts about specific subject matter based on demographic and psychographic information that is generated. A significant part of targeted messaging is that of eliciting members of the community to fulfill or complete a certain task. Influencers may request or demand that members of their community participate in certain behaviors that are then incentivized with rewards for participation (Hughes, Swaminathan, & Brooks, 2019). When an individual member sees another member participating at a specific frequency, (i.e., posting two times a day with specific hashtags) their future decisions will reflect that of their peers. Oftentimes, users will take that visualized behavior as a method of replication when it comes to how much content they should post in return. Similarly, the power dynamic from member to member is different in comparison to member to influencer when a member provides feedback and denotes that a user is indeed, “working hard” or, “doing a great job.” One of the key features of a platform like Instagram is that specific keywords and phrases are used as a way for advertisers to identify specific groupings of people who may be interested in their product. One of the features of the overall feed on Instagram is that individuals are going to see specific bits of content based on their previous viewing habits, which then directly impacts, or increases the likelihood of an individual seeing a sponsored post strictly based on their viewership or scrolling patterns. Influencers are often perceived to be more credible, and, as their name would suggest, influential in purchasing behaviors online (Djafarova & Rushworth, 2017). For example, an influencer may decide to post a picture of themselves drinking an energy drink. That influencer is suggesting and broadcasting to the community that this product is right, given the overall scope of the work. The influencer begins to blur the lines between brand ambassador and focal point of the overall community. Another example includes self-proclaimed titles (i.e., “mental health advocate”) and their impact on the reception from community members. These targeted posts may put users at risk of being exposed to content that might not be in direct connection with why they follow and why they participate in the community in the first place. There may be odd power dynamics between influencers and community members, wherein community members are persuaded to think that the only way that they can participate in the community is by going all in on all communal behaviors, including the use of hashtags and even in the creation of a brand-new profile. To say that influencers have legitimate power would be misleading. Instead, when we think about influencers, one of the curiosities revolves around how influencers interact and promote their own brand as a byproduct of community participation. For example, an influencer may create a social media post wherein they solicit their followers to comment on, like, and/or share a post on their Instagram story. That influencer may receive a message from another user, take that message, 445

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and broadcast that message across different groupings of people. This phenomenon directly aligns with the importance how the trust of peers or other members of community impacts online behaviors (Kim & Johnson, 2016). No longer is the individual able to simply share the content with the influencer without the potential for the influencer to share that user generated content with the community via the influencer’s profile. Now it is to the advantage of the influencer to broadcast that message to their larger conglomerates of people, therefore reinforcing the idea that individuals’ behaviors and membership within the community is important. Kadekova and Holiencinova (2018) crystalize the inescapable nature of community posting by pointing out that different generations of users have different behavioral performances. As an example, Millennials lean more toward social networks that are visually-driven when it comes to viewership and atypical habits of communicating with others. Moreover, the success of the influencer relying on community contributions places community members in an uncomfortable position as their preferred influencer’s success is hinged upon their ability to share content directly with the influencer, and for the influencer to then share that content with their followers.

CONCLUSION

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Many users engage in online community interaction without considering the potential pitfalls of their platform-based behaviors. Perhaps more intrusive is the notion that individuals are relying on a platform such as Instagram to satisfy a variety of individual needs. Perhaps more demoralizing is that users are being forced to participate in specific behaviors unbeknownst to them. The quest for receiving social support is now being guided through a sense of community, which often involves an influencer who leads the way. Additionally, the experience of “authentic” platform navigation is in many ways heavily influenced by brands promoting certain goods and services. The issue of data collection is especially concerning when discussing the prosocial nature of social media use with those experiencing mental health conditions. Work by Naslund, Aschbrenner, Marsch, and Bartels (2016) underscores significant benefits at the intersection of social media use and serious mental illness. Their work specifically highlights the value-add of openness and destigmatizing individual experiences with mental health through online communities. In short, individuals are motivated to follow others’ trials and tribulations while trying to establish a community online. Influencers have the ability to share content provided by members of the community, which further perpetuates the cycle of disclosure and sharing of information. Ultimately, the common practice of disclosure online coupled with the ability to share content across large masses of online communities puts privacy at risk for users.

ACKNOWLEDGMENT I would like to acknowledge Kim, Courtney, and Arden for excellent feedback as part of this writing process.

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Porter, C. E. (2004). A typology of virtual communities: A multi‐disciplinary foundation for future research. Journal of Computer-Mediated Communication, 10(1), 00. Advance online publication. doi:10.1111/j.1083-6101.2004.tb00228.x Prybutok, G., & Ryan, S. (2015). Social media: The key to health information access for 18- to 30-year-old college students. Computers, Informatics, Nursing, 33(4), 132–141. doi:10.1097/CIN.0000000000000147 PMID:25887107 Quan-Haase, A., & Young, A. L. (2010). Uses and gratifications of social media: A comparison of Facebook and instant messaging. Bulletin of Science, Technology & Society, 30(5), 350–361. doi:10.1177/0270467610380009 Rains, S. A., & Young, V. (2009). A meta-analysis of research on formal computer-mediated support groups: Examining group characteristics in health outcomes. Human Communication Research, 35(3), 309–336. doi:10.1111/j.1468-2958.2009.01353.x Rubin, A. M. (1994). Media uses and effects: A uses-and-gratifications perspective. In J. Zillman & D. Bryant (Eds.), Media Effects: Advances in Theory and Research. Lawrence Erlbaum Associates. Santarossa, S., & Woodruff, S. J. (2018). #LancerHealth: Using Twitter and Instagram as a tool in a campus wide health promotion initiative. Journal of Public Health Research, 7, 9–13. doi:10.4081/ jphr.2018.1166 PMID:29780763 Schneider, A., von Krogh, G., & Jäger, P. (2013). “What’s coming next?” Epistemic curiosity and lurking behavior in online communities. Computers in Human Behavior, 29(1), 293–303. doi:10.1016/j. chb.2012.09.008 Sherlock, M., & Wagstaff, D. L. (2019). Exploring the relationship between frequency of Instagram use, exposure to idealized images, and psychological well-being in women. Psychology of Popular Media Culture, 8(4), 482–490. doi:10.1037/ppm0000182 Simpson, C., & Mazzeo, S. (2016). Skinny is not enough: A content analysis of Fitspiration on Pinterest. Health Communication, 32, 1–8. doi:10.1080/10410236.2016.1140273 PMID:27326747 Stein, J.-P., Krause, E., & Ohler, P. (2019). Every (Insta)Gram counts? Applying cultivation theory to explore the effects of Instagram on young users’ body image. Psychology of Popular Media Culture. Advance online publication. doi:10.1037/ppm0000268

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Tanis, M. (2008). Health-related on-line forums: What’s the big attraction? Journal of Health Communication, 13(7), 698–714. doi:10.1080/10810730802415316 PMID:18958781 Virtanen, I. A., & Isotalus, P. (2011). The essence of social support in interpersonal communication. Empedocles: European Journal for the Philosophy of Communication, 3(1), 25–42. doi:10.1386/ejpc.3.1.25_1 Vogel, E., Rose, J. P., Roberts, L., & Eckles, K. (2014). Social comparison, social media, and self-esteem. Psychology of Popular Media Culture, 3(4), 206–222. doi:10.1037/ppm0000047 What is Instagram? (2020). Help.instagram.com. Retrieved from https://help.instagram. com/424737657584573

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Whiting, A., & Williams, D. (2013). Why people use social media: A Uses and Gratifications approach. Qualitative Market Research, 16(4), 362–369. doi:10.1108/QMR-06-2013-0041 Wright, K. B., Rosenberg, J., Egbert, N., Ploeger, N. A., Bernard, D. R., & King, S. (2013). Communication competence, social support, and depression among college students: A model of Facebook and face-to-face support network influence. Journal of Health Communication, 18(1), 41–57. doi:10.1080/ 10810730.2012.688250 PMID:23030518 Wu, J., Wang, S., & Tsai, H. (2010). Falling in love with online games: The uses and gratifications perspective. Computers in Human Behavior, 26(6), 1862–1871. doi:10.1016/j.chb.2010.07.033 Yoo, S. W., Kim, J., & Lee, Y. (2018). The effect of health beliefs, media perceptions, and communicative behaviors on health behavioral intention: An integrated health campaign model on social media. Health Communication, 19(1), 1–9. doi:10.1080/10410236.2016.1242033 PMID:27858470 Zhu, Y., Tong, X., & Wang, X. (2019). Identifying privacy leakage from user-generated content in an online health community-a deep learning approach. 2019 IEEE International Conference on Healthcare Informatics (ICHI), 1–2. 10.1109/ICHI.2019.8904689

ADDITIONAL READING Abidin, C. (2018). Internet Celebrity Understanding Fame Online. Emerald Publishing. doi:10.1108/9781787560765 Coursaris, C. K., Yun, Y., & Sung, J. (2010). Twitter users vs. quitters: A uses and gratifications and diffusion of innovations approach in understanding the role of mobility in microblogging. 2010 Ninth International Conference on Mobile Business and 2010 Ninth Global Mobility Roundtable, 481-486. 10.1109/ICMB-GMR.2010.44 Djafarova, E., & Rushworth, C. (2017). Exploring the credibility of online celebrities’ Instagram profiles in influencing the purchase decisions of young female users. Computers in Human Behavior, 68, 1–7. doi:10.1016/j.chb.2016.11.009

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Khan, M. L. (2017). Social media engagement: What motivates user participation and consumption on YouTube? Computers in Human Behavior, 66, 236–247. doi:10.1016/j.chb.2016.09.024 Lee, H. E., & Cho, J. (2017). What motivates users to continue using diet and fitness apps? Application of the uses and gratifications approach. Health Communication, 32(12), 1445–1453. doi:10.1080/1041 0236.2016.1167998 PMID:27356103 Muralidhara, S., & Paul, M. J. (2018). #Health selfies: Exploration of health topics on Instagram. JMIR Public Health and Surveillance, 4(2), 4. doi:10.2196/10150 PMID:29959106 Papacharissi, Z., & Mendelson, A. L. (2011). Toward a new(er) sociability: Uses, gratifications, and social capital on Facebook. Media Perspectives for the 21st Century, 212-30

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Phua, J., Jin, S. V., & Kim, J. J. (2017). Uses and gratifications of social networking sites for bridging and bonding social capital: A comparison of Facebook, Twitter, Instagram, and Snapchat. Computers in Human Behavior, 72, 115–122. doi:10.1016/j.chb.2017.02.041 Whiting, A., & Williams, D. (2013). Why people use social media: A Uses and Gratifications approach. Qualitative Market Research, 16(4), 362–369. doi:10.1108/QMR-06-2013-0041 Yoo, S. W., Kim, J., & Lee, Y. (2018). The effect of health beliefs, media perceptions, and communicative behaviors on health behavioral intention: An integrated health campaign model on social media. Health Communication, 19(1), 1–9. doi:10.1080/10410236.2016.1242033 PMID:27858470

KEY TERMS AND DEFINITIONS Gratifications: Specific needs that users seek to satisfy when using media. Influencer: A microcelebrity, or individual who has amassed a large following online. Instagram: A photo and video-sharing social networking service owned by Facebook. Instagram Comments: Users can add specific text-based comments to posts that are shared by other users. Instagram Post: A photo and/or video that is shared via Instagram; does not expire over time. Instagram Stories: A photo and/or video that is shared via Instagram; expires after a 24-hour period. Lurkers: Passive members of online communities. Social Support: Having a close other(s) to turn to disclose information.

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This research was previously published in Privacy Concerns Surrounding Personal Information Sharing on Health and Fitness Mobile Apps; pages 164-185, copyright year 2021 by Information Science Reference (an imprint of IGI Global).

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Chapter 25

Social Media Alternative for Health Communication in Nigeria Janet Aver Adikpo https://orcid.org/0000-0002-9634-120X Eastern Mediterranean University, Cyprus Patience Ngunan Achakpa-Ikyo Benue State University, Nigeria

ABSTRACT In the changing media and health landscapes, health communication requires more ways to improve and sustain new practices for health advocacy. The same way global population is soaring, people are becoming more urbane, and these vicissitudes are accompanied by the need to access new forms of media to meet information needs. This chapter assesses social media relevance as an alternative tool for health communication and clearly established that social media holds an integral locus in the dayto-day activities of the people, the same way it has for health communication. The growing concern is for stakeholders who are government and non-government agencies actors like traditional rulers, faith-based organisations, and international bodies to adopt the use of social media as an alternative for health communication in Nigeria.

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INTRODUCTION With the changing dynamics in developed and developing economies of the world, technological innovations have ushered in new ways of communication and information sharing. This way, the use of internet has become part and parcel of daily routines for individuals, businesses, organisations and governments. In the case of Africa as a whole, the global statistics on internet use indicate that from year 2000 up to date, there is a penetration rate of 35.2% (Internet World Stats, 2018). As of year 2000, there were barely two hundred thousand internet users in Nigeria. Fast-forward to 2018, the internet population has DOI: 10.4018/978-1-6684-2414-8.ch025

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 Social Media Alternative for Health Communication in Nigeria

grown to over 98 million people. According to Internet World Statistics (2018), this shows a penetration rate of 50.2% by the estimated population. By this global increase in internet use, social media tend to also offer a suitable platform for the projection of health communication to benefit citizens with varied levels of exposure across ages. Global reports on world population shows an explosion and Africa alone has experienced a rapid population growth (van Bavel, 2013). Data available through the United Nations project that by the year 2050, more than half the world’s global population growth rate will be that of Africa (UNDESA, 2017). This population surge is not alien to Nigeria, whose widely popularised giant of Africa holds sway. Today, the World Population review approximate Nigeria’s current population to be 206.14 million people. There is no doubt that with such increase, there is also a great possibility that the continent will record an all high increase rate in health concerns. Most recent disease outbreaks on the Africa continent include ebola virus, cholera, meningitis, yellow fever, zika virus plague, lassa fever, bird flu, measles, polio, typhoid, hepatitis, diarrheal, malaria (CDCP, 2017). These reported cases have variously claimed lives of unsuspecting victims, who ought to (if only they had the required information) have taken preventive measures. Hence, the need to use all available means to match the information needs of such growing population. Using the backdrop of these statistics, it is clear that there is a growing population in Nigeria. To match the needs of the people, certain factors have the ability to ensure effective health communication. Among other relative issues are improved literacy, access to internet - specifically use of social media. In very common cases, internet users are able to search health-related information on the cyberspace but those who are unable to extensively navigate, social media becomes the easiest means to access the needed information. The potential benefits of using social media are vast because information and communication technologies have transformed web interaction a face-to-face process. The health sector has experienced laudable improvement in service delivery, and the use of communication techniques to promote public health. Apart from using the mass media and other more traditional means (such as word of mouth, public announcements in markets, religious gathers, etc), information and communication technologies have also been utilised to provide the desired boost of the health system. Since the ICTs have offered new media platforms upon which health communication is thriving, there is need for more explorations on this issue. Generally speaking, everyone needs information about their health to be able to take necessary proactive measures. In any given country, health instability needs to be addressed because, if not taken care of, it (in one way or another) gain grounds to become a global threat. Therefore, the most desired responses to health issues need to have a global outlook. For instance, the United Nations declaration of the millennium development goals clearly stated the need for people to have access to safe drinking water. This pronouncement on health emphasized the need to prevent individuals of all ages from suffering the lack of proper health care and eventual death(s). The best approach to ensure the occurrence of preventable sicknesses and deaths is first to adequately provide people with information on best measures and practices. This brings us to the role play of health communication. Reports reveal that more than one third of deaths which occur across Africa have healthrelated causes. They include consumption of unclean water, poor sanitation and contaminated foods. Clearly, health information enlighten people about pathogens, germs, fungi, parasites, protozoans and odours that pose harm to the body if unnoticed. Over the years, various traditional forms of media were utilised to combat the proliferation of healthrelated ailments on the Africa continent. This is evident in the vast research that have sprung up for 454

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 Social Media Alternative for Health Communication in Nigeria

public health awareness, especially those of personal hygiene, maternal care, communicable diseases, malaria, hiv/aids, sexually transmitted diseases, yellow fever, ebola, diarrhoea, etc. The crux of health information is targeted to ensure general well-being and quality of life. State and non-state actors such as government agencies, non-governmental organisations, philanthropists, faith-based organisations, traditional rulers, as the case may be. However, the overbearing focus on using mainstream media for information distribution about public health has neglected the information needs the growing populace. Nigeria faces health challenges peculiar to any developing country. The overall assessment in the epidemiological study on the global burden of disease shows that the world’s state of health is improving but the progress is not evenly distributed (Reddy, 2016). This report further establishes that the longevity of life has improved, yet, there are more incidences and deaths resulting from diseases. The implication of the above global findings in health communication that applying proactive measures for enlightening people promise reduced morbidity rates and can avert avoidable deaths. Social media is widely considered as an effective platform for information sharing even as the traditional print and electronic mass media forms are well utilised. The reach-constraints that exist with the traditional media has been overtaken by cyberspace resulting from technological enhancement (Schroeder, Minocha & Schneider, 2010). The global reach uniquely offers users value for their information in real time through (re-)sharing, sending and receiving feedbacks from other users. The common features that resonate with the new media were lacking in the old forms; for instance, social media allows users to produce content through virtual community living. Research on social media widely touches on the best means to utilise social media for health communication while highlighting the attendant shortcomings (Chou et al, 2009; Cioni & Lovari, 2014; Eckler, Worsowicz & Rayburn, 2010; Househ, Borycki & Kushniruk, 2014; Jensen et al, 2016; Meskó, 2013). So for the various disease outbreaks that occur across the globe, the internet comes across as a reliable source of information about various health issues. Of the pool of existing literature on social media use in health communication, few are applicable to Nigeria. This chapter explored social media as an alternative for health communication in Nigeria.

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MAIN FOCUS Assessing the state of health communication before the eventual proliferation of information technologies, social media platforms and other digitally enhanced means of communication (particularly mobile telephony) have enhanced dispersal of health information (Adikpo, 2019; Prochaska, Coughlin & Lyons, 2017; Wessels, 2018). Health communication means various things and has been defined differently by many authors in different ways. Apart from sharing information, health communication promotes information through public campaigns and health training (Health, 2010). Based on this conceptualisation, health communication is not just passing information, but as Odorume (2015) argues, it is purely sending information with a health intention. The aim of ‘health communication’ to influence peoples’ health choice and improve their health literacy and communication is planned by the media. Oyama (2017) corroborates that the approaches to information distribution influence individual and community decisions on health. By seeking to improve the health and overall wellbeing, health communication facilitates in addressing health issues and challenges of a target population. 455

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 Social Media Alternative for Health Communication in Nigeria

A common issue this concept raises is improving the health condition of the public whom the communication is planned for. This planned media practice, seeks to among several other issues heighten knowledge of health issues, influence positive attitudes, highlight the benefits of behaviour changes to public health, promote views of health policy, surge demand or support for health services as well as clarify health misconceptions (van Achterberg, et al., 2010; Seymour, 2018). Scholarly studies have shown the unparalleled impact of health information on the wellbeing of people in societies across the globe, developed and developing alike. For instance, health information effectively raises awareness about health risks, while proffering solutions and motivation for skills to reduce health risks (Anatsui, 2014). In doing so, the demand for appropriate health services increase as popular inappropriate lifestyles quenches. Accordingly, availability of well-being information assist to eliminate complex choices, such as decision to cease habits that are inimical to the body. Health communication is equally beneficial for community because the public agenda is influenced through advocacy for policies that promote positive changes in the socio-economic and physical environments (Bezner, 2015; Golechha, 2016). This improves the delivery of public health, boost social norms and quality of life. The attitude of patients before the enhanced information world was different from what they do these days. Vuong (2016) reveals information technology has enabled health examinations among the young generation, while older people express indifference. In related findings (Ahangama, Lim, Koh & Poo, 2014), it was found that proliferation of information technologies has enhanced profound insight into health issues, possible ailments and the need to manage personal health. These are few of the numerous research endeavours that have emphasized the impact of technologies on the health communication practices. In its traditional form, health communication ensures information dissemination for health literacy. The quality of information become tailored to influence health decisions, prevent possible health hazards, while improving the well-being of the people. Through health communication, the strategies are often re-designed to suit the growing health needs and changing societal dynamics (Rimal & Lapinski, 2009; Hill, Lowe & Ryan, 2011). Apart from awareness creation, health campaigns tend to uphold long run benefits about health-care services and helps do away with raging misconceptions. For these reasons and many more, health communication has become a priority in contemporary digitalised society.

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User Gratification of Health Information Spread The uses and gratification theory, or approach as it is widely referred, emerged in discourses about the audience use of traditional forms of media. The assumptions of uses and gratification emphasizes audience needs of media and their active selection to enjoy different forms of satisfaction (Rubin, 2009). It is against this backdrop of audience preference of media for its gratification effect that this theory is considered applicable to the use of social media for health information and awareness. In the same manner audiences selected messages and maintained loyalty to radio, television, etc., is the same way people use social media today. It is eminent however that the basic social, psychological, physical needs of humans tend to vary according to individuals and/or groups. For instance, what might seem to be motivation for one individual or group will or may turn out different for the other. This brings bare why media messages and structure (be it old or new forms) is cast to contest for the audiences’ approval. Social media environment has distinctively redefined how uses and gratification is referenced to mass media with more features (Ruggiero, 2000). The new environment offers mixed motivation for users 456

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 Social Media Alternative for Health Communication in Nigeria

(in form of information, education, entertainment, and so on), thereby expanding the relevance of the gratification ideals. In this light, several debates have emerged about user gratification from the internet because it converges the globe. Thus, of all the platforms on the cyberspace, social media has proved to generate the most popularity and usage. Research shows that users derive enormous gratification from social media. According to Alhabash and Ma (2017), these changing undercurrents continue to influence patterns of information demand and usage. Undoubtedly, people prefer the platform that offers maximal gratification for their motives, personal interests. Overall, debates on the uses and gratification in the new media environment has not been fully established, owing to multiplicity, differing yet entwined characteristics (McCay-Peet & Quan-Haase, 2016; Wang, Yang, Zheng & Sundar, 2016). Users access health messages on social media while communicating, interacting and sharing opinion on issues of mutual-interest (Hawn, 2009). Circulation of health information take on forms like photographs, short-videos (instructional, illustrative or musical), live information, personal opinions (from individual users, concerned groups, non-governmental agencies, etc), which can be updated statuses or posts. Therefore, users gain knowledge in the like manner they derive social support, foster inter-relational exchanges and make new connections.

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Issues in the Healthcare Landscape of Nigeria Concerns for global healthcare have changed over the years. In Africa, the demand for health information has intensified on issues such as access to clean water and sanitary measures targeted towards alleviating contagious health conditions. As a matter of fact, the growing urban and rural populations have necessitated public policies to strengthen and complement local and foreign interventions. Notably, the issues that affect the health sector across Nigeria have also benefited from similar concerns. To a large extent, the government has continued to renew, while also providing modern healthcare facilities (especially for the rural populace). The major concern is the low economic status of non-urban residents in comparison with urban dwellers (Simler & Dudwick, 2010). This disproportion exists in most rural areas across the world, where sufficient healthcare professionals, hospitals, and other medical equipments (like medication, ambulances, prompt quality care, etc) abound, but the reverse is the case for rural areas. In Nigeria, information measures prevent reoccurring incidences of deaths and disease outbreaks. This shows prospects that Nigeria’s economy will continue to flourish and have wealthy populace if health-wellbeing is accorded better priority. Healthy lifestyles of citizens of citizens contributes to sectoral development of a society. This translates to a healthy man as an indicator for wealth, and likewise a nation. The issues in the nation’s health sector are closely linked to the numerous challenges yet to be surmounted across the African continent. For example, the workforce has fair share of the health sector crisis. Health sector workforce is faced with challenges such as funding, unemployment and unprofessionalism (Adeloye et al., 2017). Other factors are notably peculiar to Nigeria, but also exist in most, if not, all the other developing nations. Several reform attempts have been made overtime but many Nigerians still lack access to primary health care. This is because the most of the treatment centers are located in the urbane areas, and these facilities are often under-staffed and under-equipped. Therefore, outbreak of airborne diseases, poor hygiene and lack of maintenance culture of public health facilities impact the health of rural dwellers more than those in the urban locations. 457

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 Social Media Alternative for Health Communication in Nigeria

In spite of these inestimable challenges faced by healthcare in Nigeria, many attendant prospects can be harnessed to benefit both the public and private sectors (Folakemi, 2012). For instance, Nigeria widely known as the most populous black nation offers a positive pointer for the health market. Although poor services have necessitated majority of the urban population to patronise private health facilities, government’s huge role-play cannot be quickly ignored. Apart from the market, other key prospects are rapid human capital growth and development, increased income, improved standard of living, and proliferation of health information.

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Shortfalls of Health Communication in Nigeria In today’s changing society, health literacy has attracted wide global concern. This is because, without a proper health education strategy or structure, the healthcare system will in itself be ineffectual. Through health communication, the relationship between stakeholders (like patients, professionals and policymakers) regardless of their location (rural or urban areas alike), focus and objectives can be enhanced. Generally speaking, technology has greatly influenced the way operations take place everywhere in the world. In the case of health communication, research establish the tremendous advancement in the use of technological innovations to facilitate the spread of health-related information (del Carmen Ortega-Navas, 2017; Se`bastian, 2017). Anchored on the universal thesis of health for all, health communication emphasises the need to improve the socio-economic conditions of the people. The most striking issue about health information is the authentic way it targets individuals and groups to promote favourable living conditions and the environment. Notwithstanding, certain bottlenecks mitigate against the effectiveness of health communication in Nigeria. The debate on the challenges in spreading health information is echoed on the common issues in the health sector (Jha et al, 2013). These legion of problems are not in any way peculiar to one country or region, but can be relatively identified depending on the different climes. The health communication practice in Nigeria is replete with shortfalls that cannot be overlooked here. To a large extend, the state of health communication in Nigeria can be likened to the broadly discussed issues in the healthcare landscape. These challenges are widely argued to include poverty, illiteracy, cultural heterogeneity, health workforce and ineffective media advocacy. Illiteracy is one of the major impediments to a thriving health communication. Studies show that low literacy rate of a particular community causes a decline in health literacy, which in turn impedes health improvement (Dowse, 2016; Levin-Zamir, Leung, Dodson & Rowlands, 2017). Notably, most countries have earmarked health literacy measures to tackle the issues that have distinctively affected their populace. As a multiethnic country, the issue of language may also tend to cause a shortfall in health information distribution. Been an integral part of communication, language when not appropriately utilised become a barrier and lead to ineffeciency of health campaigns. Nguyen et al (2015) argues on the necesity of language for health literacy across global climes, but notes however that it has continued to pose as a challenge. The inability of people to understand health information, and take precaution to adapt health measures brings about the failure to make favourable health decisions. Thus, people’s inability to comprehend health messages invalidates the core essence of health communication. Another shortfall is poor workforce base. This is major constraint because as major stakeholders in the health sector, health workers are opinion leaders, whose welfare must also be taken very seriously.

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 Social Media Alternative for Health Communication in Nigeria

Due to poor health infrastructure, administrative downsides and other attendant issues, it has become very difficult for health communication strategies to thrive in Nigeria. Cultural barriers affect the spread of health information across Nigeria. In some communities, traditional practices still hold sway over modern approaches to carter for certain health conditions. Widespread loyalty to the use of traditional medicine practices continues to cause unaccountable number of deaths (Abdullahi, 2011). Superstition and/or religious beliefs (especially in northern part of the country) deny administering vaccinations on children to prevent polio myelitis (Obadare, 2005). For certain reasons, the effect of poverty and illiteracy compounds the cultural influence among people, resulting into failure of health information to make the necessary impact. The numerous health campaigns that ought to bring about the necessary interventions for socio-cultural behavioural change are unable to achieve the desired goals due to these existing shortfalls.

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Assessing Media Participation in Health Communication In the history of societal studies, mass media has assumed a central place in the daily lives of people, long before the eventful technological innovations ushered in new forms of communication. Research shows that media has enhanced health communication in an enormous way through advocacy among grassroots, policy boost, construction of coalition on health needs and projecting issues for the prevention of health disasters (Brown & Walsh-Childers, 2002; Wakefield, Loken & Hornik, 2010). Simply put, what the media does is empower the people to take responsibility about the health through purveying information to address the pressures and panic on global health. Media participation is desired in public health more than any recorded time in history. The need for media coverage is borne out of the constant outbreaks of ailments. According to Flora, Maibach and Maccoby (1989) media participation in health promotion intervention takes place in four intensities, namely: media as educator, supporter, promoter and supplement. Distinguishing these media roles in health intervention, Flora et al elaborated that media campaigns enormously impact health outcomes by efficiently modifying precursors to health conduct in day-to-day living. Through media participation, citizens’ beliefs and best practices for coping with health needs are supported, while promoting familiarity with health routines. These abriged role show that media singlehandedly carves the desired intervention by stimulating and improving health information. The advent of information technologies has further strengthened the intensity of media participation. Assessing media participation in health advocacy, it is very pertinent to note that the mainstream platforms have been effectively utilised at all times. Issues such as maternal care, immunization, family planning, malaria, tuberculosis, gmenigitis, polio, typhoid, hiv/aids, and a host of others have been widely publicised across the country (Onakewhor & Chiwuzie, 2011; Orimadegun & Ilesanmi, 2015). Through the media, for instance, sensitization about the causes, ways of controlling the spread and treatment for malaria have adequately aided in the fight against the scourge. Malaria seems to be common among the poor thus, radio is utilised on a regular basis to educate rural dwellers on how to curb nesting of mosquitoes. In an intensive report on acquired immuno-deficiency syndrome reveal that health campaigns are numerous and frequent. Since the first case was recorded in Nigeria, people have become well aware through media health programs; adverts and slogans carried through television, radio, newspapers and magazines. From time to time, healthcare providers relentlessly inform, educate, encourage and direct the public on the preventive measures and living with the disease. 459

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 Social Media Alternative for Health Communication in Nigeria

In the fight against genital mutilation, government agencies and health practitioners have enforced laws to prohibit this act, still, it is widely practiced. The female genital mutilation is a culturally induced practice carried out in some parts of northern Nigeria. Unfortunately, there is high health risk of women who undergo this mutilation, most of who likely die as a result of the complications. The media has proved effective in the advocacy on this issue with reliable and sustainable strategy for health communication (Olubunmi, Ofurum & Tob, 2016). Poliomyelitis is most prevalent in children younger than five years old. Through the intervention of the World Health Organisation, polio vaccines are frequently administered to the parts of the country that record prevalent cases. So far, tremendous success has been recorded in the eradication of polio, but selected cases are still present in the northern part of the country. This is because of religions misconceptions that question the reliability and safety of the polio vaccines and those it is administered upon. To deal with this issue, the government, traditional leaders and other private agencies have intensified advocacy using the media and traditional means to enlighten the people. Media participation in family planning have can also be acknowledged. Many successes recorded on the sensitisation about socio-economic and health consequences affecting women who ignore family planning. Having children every year can result into untrained children, overdependence and strain on health facilities. At the wake of the ebola outbreak in 2014, the information spread by media and other means is revealed as the reason why the scourge did not spread too quickly. Media intervention was proactive, and as a result, fewer deaths were recorded. With the keen handling of the information, the attention of the people were drawn to all they needed to know about the disease from its origin, causal agents, symptoms signs and safety measures. The distributed information provided education for citizens, who in turn sustained the spread using social media (which is likened to face-to-face interaction) to increase awareness. The media’s significant role for health communication in Nigeria cannot be overemphasized. All hands are on deck by state and non-state actors to spread information towards tackling diseases and other health related issues through health communication. Appreciative successes has been recorded but a lot more is still desired.

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Social Media Prospects for Health Communication in Nigeria From the foregoing, it is established that health communication has contributed to health promotion and disease prevention in several ways (Nkanunye & Obiechina, 2017). Therefore, it has become pertinent to assess the prospects for the use of social media in health communication. Social media viability is commended for its central place in the daily affairs in society. The advent of information and communication technologies has introduced several processes and enhanced the existing media environment. As a result of new processes, ‘there is a unification of learning processes, information gathering and exchange, knowledge sharing and so many more’ (Adikpo & Ugondo, 2018, p.197). One most striking thing about social media is the two-way communication process, which outwits the one way style that was the case with traditional mass media. The effectiveness of social media platforms is enhanced for information sharing by the technological innovations thereby boosting its popularity. With social media, it is also possible for users to access valuable information in real time through sending and receiving feedbacks from other users. The emerging variety of high-tech has transformed the information society, so much so that newer opportunities have emerged. 460

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 Social Media Alternative for Health Communication in Nigeria

For a long time before the invention of the internet, information could reach people sparsely through traditional rulers, then the broadcast and print media came through and eliminated the lapses that made it difficult for free flow of information. Today, the internet has opened doors for unrestricted sources and more frequent (re)distribution of messages. Apart from frequency and free flow of information, internet users can now actively participate in the ‘production’ of messages. Thus, this privilege for users to create and share messages is popularly referred to as user generated content (Luca, 2015), where the makers of content do not necessarily need to have prerequisite training. In the traditional forms of media, information is more static, but tend to be fluid in the social media environment. Users of social media are able to interpret information and express their opinion based upon their understanding of the message they receive from other users (be it individuals, groups, professional or corporate bodies). With a differing attitude of social media users from mainstream media audience, some people wait to receive information from specific sources before they tend to consider the credibility of such information (Hermida, Fletcher, Korell & Logan, 2012; Kõuts-Klemm & Brites, 2017). The multiplicity of information sources offers users alternative messages and/or opinions. It is more interesting that social media is not totally controlled compared to influence of government and a select few elite. This has made possible virtual collaborations between various stakeholders to improve the credibility of information while promoting public health (care). With the increasing number of people signing in on social media platforms by the day, several accounts hold that the most striking reason for this growing popularity is based on relative human interests. This makes varied opinions available to provide a balance for those sources with fewer details. Looking at the shortfalls of health promotion processes, social media stands out as a suitable alternative for information distribution. Several prospects of using social media to enhance health communication (Boulos, 2013; Balatsoukas, et al, 2015; Shi, Poorisat & Salmon, 2018). In this case, variety of social media platforms improves, balance and consolidate messages shared from familiar sources. Through social media, users interrelate with other users, especially those who have shared certain information to verify doubts and/or provide specific details. While they ask, other users can also access these conversations or responses and benefit without having to repeat similar questions but ask for further clarifications about unclear details. Interestingly too, users of social media seek health information to get support for emotional tensions, drive, learn responsibility and counsel to a certain extent (Nadkami & Hofmann, 2012). Apart from these interests and needs, consumers of health information on social media have the power to influence policy in their various communities on how best to make the healthcare sector more tolerable. This is possible when users initiate debates and make messages to go viral, to enforce instant and necessary actions to be implemented by the appropriate authorities. Suffice it to say that in today’s information society, the rising numbers of online users have proven that on a daily basis, more and more people are seeking information through logging into social media platforms. Therefore, there is hardly any daily life activity that completely occurs without having to involve consulting online media platforms for clarity, indepth details and other means to complement available information.

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 Social Media Alternative for Health Communication in Nigeria

SOLUTIONS AND RECOMMENDATIONS Using the backdrop of the issues discussed in this chapter, there is an increasing need for health communication to thrive in Africa, and Nigeria is not an exception. Understandably, the government of Nigeria and other non-state actors have embarked on to sensitization and sanitisation health campaigns to benefit citizens. However, a lot is still desired to ensure that the healthcare sector and practice of health attains stability. To do so, the following recommendations are worth taking into consideration. Health information handlers need to inject more passion in the coverage of healthcare issues to avert incessant deaths and outbreaks. The health sector advocacy has increased in recent times and these efforts are moving in tandem with the growing sophistication of people. But what more need to be done? As different contexts can be discerned, it follows that governments must adopt strategies that best suit the chosen climes to ensure excellent healthcare. For instance, cultural and religious differences affect health policies implemented by the government, therefore, there is need for suitable proactive solutions. Media’s leading role in health advocacy on various issues (such as politics, environment, culture, and socio- economic factors) should be adequately preserved. To create an enabling environment for the health sector, an all-inclusive government strategy should be put in place to encourage citizen participation in decision-making processes. Another important issue is the need for non-governmental organisations to foster healthcare welfare for citizens. So far, several efforts in form of projects, enlightenment campaigns, donation for infrastructure, and other outreach activities have been effectively utilised. There is need to work in collaboration with governments to accomplish more in the quest to make the global healthcare sector more beneficial and impactful. Other actors actively involved in advocacy are faith-based organisations, traditional leaders and cultural groups, whose pronouncements play a crucial role to influence citizens. To say the least, traditional media (print and broadcast forms) need to remain consistent in the distribution of health information. As they intensify existing measures, it is pertinent to consider media convergence as a way forward. With media convergence, it has become very convenient and easy for users and/or audience to access information. Thus, the best way is by adopting the use of social media platforms for continued projection of content as done in mainstream media.

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FUTURE RESEARCH DIRECTION The overall aim of this chapter was to assess the viability of social media as an alternative for health communication in Nigeria. It has been proven that the new media environment imbued by technological advancement is suitable for fostering the ideals of health advocacy among communities, be it rural and/ or urban dwellers. The proposed thesis is that government, non-governmental organisations as well as mainstream media handlers must ensure the continued media use for health advocacy, but also adopt the use of social media, which is increasingly occupying a better part of our daily lives. The areas, which constitute prospective future research direction are enormous. First of all, there is need to access the use of social media as a platform for health information about the health ailments that have plagued Nigeria in the past and present. This will ascertain the viability of health communication, while baring possible loopholes that social media use can correct, to suit the changing information needs of people. Apart from assessing the usage, the challenges of social media in health communication also

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 Social Media Alternative for Health Communication in Nigeria

need to be researched. To know the constraints of the social media platforms is to further strengthen its adoption processes. Equally important is the need to access how social media platforms have proved effective in other climes, and compare with that of Nigeria. The adoption in other African countries, and those on other continues will go a long way to support and strengthen policies that can also be applied in Nigeria to facilitate the successes of health communication.

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Bezner, J. R. (2015). Promoting health and wellness: Implications for physical therapist practice. Physical Therapy, 95(10), 1433–1444. PMID:25908523 Boulos, M. N. (2013). Using social media for improving health literacy. In I. Kickbusch, J. M. Pelikan, F. Apfel, & A. D. Tsouros (Eds.), Health Literacy: The Solid Facts (pp. 63-67). World Health Organisation (WHO Regional Office for Europe). Brown, J. D., & Walsh-Childers, K. (2002). Effects of media on personal and public health. Media Effects: Advances in Theory and Research, 2, 453–488.

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CDCP. (2017). Impact of Malaria. Retrieved May 10, 2018, from Malaria’s Impact Worldwide: https:// www.cdc.gov/malaria/malaria_worldwide/impact.html Chou, W. Y., Hunt, Y.M., Beckjord, E.B., Moser, R.P., & Hesse, B.W. (2009). Social media use in the United States: Implications for health communication. Journal of Medical Internet Research, 11(4). Cioni, E., & Lovari, A. (2014). Social media for health communication: Implementation issues and challenges for Italian public health authorities. In M. Househ (Eds.), Social Media and Mobile Technologies for Healthcare (pp. 237-263). IGI Global. del Carmen Ortega-Navas, M. (2017). The use of new technologies as a tool for the promotion of health education. Procedia: Social and Behavioral Sciences, 237, 23–29. Dowse, R. (2016). The limitations of current health literacy measures for use in developing countries. Journal of Communication in Healthcare, 9(1), 4–6. Eckler, P., Worsowicz, G., & Rayburn, J. W. (2010). Social media and healthcare: An overview. PM & R, 2(11), 1046–1050. PMID:21093840 Flora, J. A., Maibach, E. W., & Maccoby, N. (1989). The role of media across four levels of health promotion intervention. Annual Review of Public Health, 10(1), 181-201. Accessed on 24/12/2019 from https://www.annualreviews.org/doi/pdf/10.1146/annurev.pu.10.050189.001145 Folakemi, O. (2012). Austerity and the challenges of health for all in Nigeria. International Journal of Development and Sustainability, 1(2), 437–447. Golechha, M. (2016). Health promotion methods for smoking prevention and cessation: A comprehensive review of effectiveness and the way forward. International Journal of Preventive Medicine, 7(1), 7–13. PMID:26941908 Hawn, C. (2009). Take two aspirin and tweet me in the morning: How twitter and facebook and other social media are reshaping health care. Health Affairs, 28(2), 361–368. PMID:19275991 Hermida, A., Fletcher, F., Korell, D., & Logan, D. (2012). Share, like, recommend: Decoding the social media news consumer. Journalism Studies, 13(5-6), 815–824.

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Hill, S., Lowe, D. B., & Ryan, R. E. (2011). Interventions for communication and participation: Their purpose and practice. In H. Sophie (Ed.), The Knowledgeable Patient: Communication and Participation in Health (pp. 27-39). Wiley Online Library. Househ, M., Borycki, E., & Kushniruk, A. (2014). Empowering patients through social media: The benefits and challenges. Health Informatics Journal, 20(1), 50–58. PMID:24550564 Jensen, B. P., Mitra, N. A., Shah, A., Wan, F., & Grande, D. (2016). Using digital technology to engage and communicate with patients: A survey of patient attitudes. Journal of General Internal Medicine, 31(1), 85–92. PMID:26385117 Jha, P., Nugent, R., Verguet, S., Bloom, D., & Hum, R. (2013). Disease Control Priorities in Developing Countries. Centre for Global Health Research.

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Kõuts-Klemm, R., & Brites, M. J. (2017). How digital converges cross-media news typologies across countries: A comparative study of news consumption in Estonia and Portugal. Journal of Audience and Reception Studies, 14(2), 464–483. Kurtz, S., Draper, J., & Silverman, J. (2016). Skills for Communicating with Patients (3rd ed.). CRC Press. Levin-Zamir, D., Leung, A. Y., Dodson, S., & Rowlands, G. (2017). Health literacy in selected populations: Individuals, familites and communities from the internatonal and cultural perspective. Information Services & Use, 37(2), 131–151. Luca, M. (2015). User-generated content and social media. In S. Anderson, J. Waldfogel, & D. Stromberg (Eds.), Handbook of Media Economics (Vol. 1A, pp. 563-592). North-Holland. McCay-Peet, L., & Quan-Haase, A. (2016). A model of social media engagement: User profiles, gratifications and experiences. In H. O’Brien & P. Cairns (Eds.), Why Engagement Matters (pp. 199–217). Springer. Meskó, B. (2013). Social Media in Clinical Practice. Springer. Nadkami, A., & Hofmann, S. G. (2012). Why Do People Use Facebook? Personality and Individual Differences. National Centre for Biotechnology Information. Nguyen, T. H., & Park, H., R, H. H., Chan, K. S., Paasche-Orlow, K., Haun, J., & Kim, M. T. (2015). State of the science of health literacy measures: Validity implications for minority populations. Patient Education and Counseling, 98(12), 1492–1512. PMID:26275841 Nkanunye, C. C., & Obiechina, G. O. (2017). Health communication strategies as a gateway to effective health promotion and well-being. Journal of Medical Research and Health Education, 1(3:13), 1-4. Obadare, E. (2005). A crisis of trust: History, politics, religion and the polio controversy in Northern Nigeria. Patterns of Prejudice, 39(3), 265–284. Odorume, A. (2015). Mass media health communication: Imperative for sustainable health development in Nigeria. Journal of African Studies, 4.

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Olubunmi, A. P., Ofurum, O., & Tob, L. E. (2016). Analysis of case studies in public health communication strategies in Nigeria. Research Journal of Mass Communication and Information Technology, 2(2), 19–30. Onakewhor, J. U., & Chiwuzie, J. (2011). Sero-prevalence survey of rubella infection in pregnancy at the University of Benin Teaching Hospital, Benin City, Nigeria. Nigerian Journal of Clinical Practice, 14(2), 140–145. PMID:21860127 Orimadegun, A. E., & Ilesanmi, K. S. (2015). Mothers’ understanding of childhood malaria and practices in rural communities of Ise-Orun, Nigeria: Implications for Malaria Control. Journal of Family Medicine and Primary Care, 4(2), 226–231. PMID:25949972 Oyama, O. A. (2017). Health communication: The responsibility of the media in Nigeria. Health Communication, 2(3), 1–4.

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Prochaska, J. J., Coughlin, S. S., & Lyons, E. J. (2017). Social media and mobile technology for cancer prevention and treatment. American Society of Clinical Oncology Educational Book, 37, 128–137. PMID:28561647 Reddy, K. (2016). Global burden of disease study 2015 provides gps for global health 2030. Lancet, 388(10053), 1448–1449. PMID:27733278 Rimal, R. N., & Lapinski, M. K. (2009). Why health communication is important in public health. Bulletin of the World Health Organization, 87, 247–247a. PMID:19551226 Rubin, A. M. (2009). Uses-and-gratifications perspectives on media effects. In J. Bryant & M. B. Oliver (Eds.), Media Effects (pp. 181–200). Routledge. Ruggiero, T. E. (2000). Uses and gratification theory in the 21st century. Mass Communication & Society, 3(1), 3–37. Schroeder, A., Minocha, S., & Schneider, C. (2010). The strengths, weaknesses, opportunities and threats of using social software in higher and further education teaching and learning. Journal of Computer Assisted Learning, 26(3), 159–174. Sebastian, M. P. (2017). High-value health system for all: Technologies for promoting health education and awareness. International Journal of Social, Behavioural, Educational, Economic. Business and Industrial Engineering, 11(8), 2081–2086. Seymour, J. (2018). The impact of public health awareness campaigns on the awareness and quality of palliative care. Journal of Palliative Medicine, 21(S1), S-30. PMID:29283867 Shi, T., Poorisat, T., & Salmon, C. T. (2018). The use of social networking sites (SNSs) in health communication campaigns: Review and recommendations. Health Communication, 33(1), 49–56. PMID:27858464 Simler, K., & Dudwick, N. (2010). Urbanisation and Rural-Urban Welfare Inequalities. World Bank Poverty Reduction and Equity Unit. Retrieved August 13, 2018, from http://siteresources.worldbank.org/ INTPOVERTY/Resources/060310_Simler_Dudwick_Rural-Urban_Welfare_Inequalities.pdf UNDESA. (2017). World population prospects: The 2017 revision, key findings and advanced tables. Working Paper 248. New York: United Nations. Retrieved July 24, 2018, from https://esa.un.org/unpd/ wpp/publications/files/wpp2017_keyfindings.pdf

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van Achterberg, T., Huisman-de Waal, G. G., Ketelaar, N. A., Oostendorp, R. A., Jacobs, J. E., & Wollersheim, H. C. (2010). How to promote healthy behaviours in patients: An overview of evidence for behaviour change techniques. Health Promotion International, 26(2), 148–162. PMID:20739325 van Bavel, J. (2013). The world population explosion: Causes, backgrounds and projections for the future. Facts, Views & Vision in ObGyn, 5(4), 281–291. PMID:24753956 Vuong, Q.-H. (2016). Health communication, information technology and the public’s attitude toward periodic general health examinations. F1000Research, 5(2935).

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Wakefield, M. A., Loken, B., & Hornik, R. C. (2010). Use of mass media campaigns to change health behaviour. Lancet, 376(9748), 1261–1271. PMID:20933263 Wang, R., Yang, F., Zheng, S., & Sundar, S. (2016). Why do we pin? New Gratifications explain unique activities in pinterest. Social MEdia and Society, 2(3), 1–9. Wessels, B. (2018). Communicative Civic-ness: Social Media and Political Culture. Routledge.

ADDITIONAL READING Benetoli, A., Chen, T. F., & Aslani, P. (2018). How Patients’ Use of Social Media Impacts their Interactions with Healthcare Professionals. Patient Education and Counseling, 101(3), 439–444. PMID:28882545 Bode, L., & Vraga, E. K. (2018). See Something, Say Something: Correction of Global Health Misinformation on Social Media. Health Communication, 33(9), 1131–1140. PMID:28622038 Guo, L., & Vu, H. T. (2018). Media vs. Reality. The Agenda Setting Journal, 2(1), 3–24. Kietzmann, J. H., Hermkens, K., McCarthy, I. P., & Silvestre, B. S. (2011). Social Media? Get serious! Understanding the Functional Building Blocks of Social Media. Business Horizons, 54(3), 241–251. Kim, Y. M. (2015). Is Seeking Health Information Online different from Seeking General Information Online? Journal of Information Science, 41(2), 228–241. Li, Y., Wang, X., Lin, X., & Hajli, M. (2018). Seeking and Sharing Health Information on Social Media: A Net Valence Model and Cross-Cultural Comparison. Technological Forecasting and Social Change, 126, 28–40. Xia, L., Deng, S., & Liu, Y. (2017). Seeking Health Information Online: The Moderating Effects of Problematic Situations on User Intention. Journal of Data and Information Science, 2(2), 76–95. Yonker, L. M., Zan, S., Scirica, C. V., Jethwani, K., & Kinane, T. B. (2015). “Friending” Teens: Systematic Review of Social Media in Adolescent and Young Adult Health Care. Journal of Medical Internet Research, 17(1), e4. PMID:25560751

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Yoo, S. W., Kim, J., & Lee, Y. (2018). The Effect of Health Beliefs, Media Perceptions and Communicative Behaviours on Health Behavioural Intention: An Integrated Health Campaign Model on Social Media. Health Communication, 33(1), 32–40. PMID:27858470

KEY TERMS AND DEFINITIONS Health Communication: Is communicating information to promote public health through the use of various media platforms, health campaigns for education about health issues. Information and Communication Technologies: Otherwise called ICTs, is a term used to denote computer-based and telecommunication processes with which the gathering, processing, sharing and storing of information is done.

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 Social Media Alternative for Health Communication in Nigeria

Information Sharing: Is the process which occurs either through one-to-one or one-to-many exchanges. Internet Use: Refers to the number of people that make use of the internet. Media Advocacy: Is a strategic use of media platforms to foster policy initiatives for public health. Public Health: Is organised efforts to promote basic human health issues. Social Media: Is internet enhanced platforms, through which users create, share and store content using social networking sites. User Gratification: Focuses on the purpose for which users utilise media messages.

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This research was previously published in Dialectical Perspectives on Media, Health, and Culture in Modern Africa; pages 19-38, copyright year 2021 by Information Science Reference (an imprint of IGI Global).

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Chapter 26

Media Awareness Preferences for Information on Sickle Cell Disorder Among University Students in Southwestern Nigeria Cynthia Omoseyitan Ojomo Afe Babalola University, Nigeria Taye Babaleye Babaleye Lead City University, Nigeria

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ABSTRACT Sickle cell disorder (SCD) is a defective blood disorder that causes pain associated with blood genotypes of victims who risk dying before their 30th birthday. SCD is best controlled when victims avoid getting married to one another to prevent the spread of susceptible genotype. Many youths lack basic facts of SCD. For long, its awareness was limited to broadcast and print media. But today, social media platforms—Facebook, Instagram, Twitter, and WhatsApp—are also used to create awareness on the disease. This study attempts to determine the preferred communication channels for creating awareness on SCD among university students in South-Western Nigeria. Survey research design was adopted. Respondents were 259 students of Obafemi Awolowo University, Ile-Ife, and University of Ibadan, both in South-West Nigeria. Descriptive and inferential statistics were used for data analysis. Social media awareness was 51.6%, and conventional media was 48.4%. Thus, more of the respondents preferred awareness on SCD through social media platforms.

DOI: 10.4018/978-1-6684-2414-8.ch026

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Research Anthology on Improving Health Literacy Through Patient Communication and Mass Media, edited by Association, Information Resources Management, IGI Global, 2021. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/nyulibrary-ebooks/detail.action?docID=6686709. Created from nyulibrary-ebooks on 2021-09-02 06:30:41.

 Media Awareness Preferences for Information on Sickle Cell Disorder Among University Students

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INTRODUCTION The use of mass communication for information dissemination is chiefly concerned with how the message persuades or otherwise affects the behaviour, attitude, opinion, or emotions of the person or group of persons receiving the information. Thus, specialists in the public health sector rely to a large extent on the traditional channels of mass communication (the radio and television, the newspapers and magazines) and lately, the internet (social media) to sensitise, mobilise, inform and educate the generality of citizens on health matters. In addition, they also make use of posters, banners, hand bills, and video programmes to educate and inform patients in hospitals and health centres with a view to creating awareness on public health issues. According to Witte and Allen (2000), the traditional media and in this respect (radio, television, newspapers and magazines) “are intensively employed in health communication. Huge sums of money are spent annually on materials and salaries that have gone into the production and distribution of booklets, pamphlets, exhibits, newspaper articles, and radio and television programmes”. These media are employed at all levels of public health in the hope that three effects might occur: the learning of correct health information and knowledge, the changing of attitudes and values and the establishment of new health behaviours. The traditional media campaigns have long been a tool for promoting public health (Noar, 2006); being widely used to expose high proportions of large populations to messages through routine use of the television, radio, and newspapers and magazines. Communication campaigns involving diverse topics and target audiences have been conducted for decades (Wakefield, Loken & Hornik, 2010). Such campaigns are frequently competing with factors such as pervasive product marketing, powerful social norms, and behaviours driven by addiction or habit. Furthermore, traditional media campaigns are generally aimed primarily to introduce new knowledge and create awareness. However, there has not normally been a high expectation that such campaigns on their own would change people’s behaviour (Wakefield et al., 2010). Many factors are involved before human behavioural changes can be attained to improve the health of the people. There are indications that social media is now a powerful source of health information in today’s society. Although there is a great deal of interest in using social media as a tool for public health communication, the research evaluating its utility is still in its infancy. There is an abundance of both formal and informal health conversations related to public health issues and organised health-related activities on leading social media platforms such as YouTube, Twitter, Instagram, Whatsapp and Facebook. The quality of health information available to users on these platforms is highly variable, raising some concerns that social media users are exposed to unopposed viewpoints that counter core public health recommendations and contemporary medical science, such as those opposing immunisation and promoting smoking (Okoye, 2011; Nwosu, 2012; Obukoadata & Abuah, 2014). One of these many health related issues is sickle cell disorder (SCD), a deadly phenomenon which often defies medication but can be controlled through prevention. One of the most striking facts about sickle cell disorder is lack of public awareness and interest in the disease. The magnitude of the problem is apparent when sickle cell disorder is compared to other diseases that have had greater public interests. Although found among all racial groups, individuals of African descent have the highest prevalence (Serjeant 2013; World Health Organization, 2008). People with Sickle Cell Disorder (SCD) have abnormal haemoglobin (Hb), called haemoglobin S or sickle haemoglobin, in their red blood cells. Haemoglobin is a protein in red blood cells that carries oxygen throughout the body. The sickle cell trait (SCT) confers a survival advantage relative to individuals with normal Hb in a malaria endemic region where the 470

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 Media Awareness Preferences for Information on Sickle Cell Disorder Among University Students

largest number of individuals with SCT reside (Serjeant, 2013). The prevalence of SCT varies widely from region to region and reaches up to 40% in parts of West Africa (Serjeant 2013; WHO 2008). In Nigeria, the prevalence of SCT is estimated at 24% (Taiwo, Oloyede & Dosumu 2011; WHO 2006). It is estimated that there are more than 40 million individuals who carry the sickle cell trait in Nigeria and more than 150,000 children born each year with Sickle Cell Anaemia (SCA) (Galadanci, Wudil & Balogun, 2014). They believe that the care available for SCD in Nigeria is still suboptimal and there is an urgent need for concerted efforts to tackle the problem. They emphasised that to make a significant impact on the burden of the disease would require more focus at the primary health care level. According to World Health Organization (2008), sickle cell disorder contributes to the 5% under five deaths on the African continent; more than 9% of such deaths occur in West Africa and up to 16% of under-five deaths in individual West African countries. Akinyanju (2009) explains that about 2-3% of Nigerians live with the disease while 25-30% of Nigerians carry the gene that can give rise to sickle cell disorder (SCD). It is estimated that by the year 2025, a total number of 50,000 children born yearly in Nigeria will be affected by sickle cell disorder, and this poses a great concern, (George, 2011). In order to prevent further spread of SCD screening and testing have been recommended for couples before marriage (Akinyanju, 2009). The social media, unlike the traditional media, is an unregulated space wherein all and sundry can post information with little or no scrutiny. This renders it vulnerable to misleading information whether as a result of error or sheer mischief on the part of those posting the information (Okoye, 2011). Literature has shown that the youths constitute a bulk of social media users (Wiley and Sisson, 2006). This apparently is a direct result of the fact that the Internet is dominated by young people (Salako & Tiamiyu, 2007). Citing studies by Lumen (2004), Arnold (2006), Adekeye (2009) and Nelson (2010), Salako and Tiamiyu argue that ‘the world over, the Internet has proved to be particularly attractive to the younger generation”. This fact may be attributable to Internet dynamic multimedia character which lends itself to all manner of uses. And given that the youth are naturally adventurous, willing to experiment on all manner of innovations, the Internet thus becomes their delight. The validity of this fact has been empirically demonstrated in relation to various climes including Nigeria. Even a mere casual observation is likely to convince one that Nigerian youths constitute the core of the Internet-using population in the country’. A significant segment of the youth users of the Internet in Nigeria are students, both of secondary and tertiary levels of learning (Salako & Tiamiyu, 2007). Elaborating on this point, the authors hold that Students constitute a large portion of Internet users in Nigeria for some obvious reasons. First, the students are largely young people with strong urge for trying out new things and are therefore naturally attracted to “exciting” innovations such as the Web. Secondly, their educational exposure helps them to easily acquire the media literacy required for Internet use. And lastly, certain exigencies of their academic work (such as researching for assignments and online school registration) tend to compel them towards Internet exposure. Okoye (2011), however, adds that there is “far more access” among students of tertiary institutions than their secondary school counterparts given that the former are basically more financially, culturally and academically more independent which affords them the leverage (in terms of wherewithal and freedom) to access the Internet. Furthermore, the university undergraduate students are likely to have more intellectual and even social needs to attend to on the Internet. The lack of national concern on SCD has created a gap in health care. However, the awareness about SCD and attitude to genetic counselling before marriage is a great challenge in the prevention of the disease. This very fact calls for concern visà-vis the extent to which the audience relies on the traditional and, or the social media for information 471

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 Media Awareness Preferences for Information on Sickle Cell Disorder Among University Students

on health awareness, especially sickle cell disorder and the extent to which such information influences their reaction. This formed the basis for the study reported in this book chapter.

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Challenges of Information Dissemination on Sickle Cell Disorder There is a general malaise on the dissemination of clinical assessment and or breakthroughs on SCD in Nigeria and perhaps in other African countries. There were occasions in the past when it had been widely reported in the traditional media, especially newspapers that cure had been found for SCD in Nigeria. However, such media claims had always fizzled out without any further information about the cure. Furthermore, it had been reported that the University of Ibadan in collaboration with some foreign institutions had discovered a permanent remedy to the SCD menace. This no doubt has an adverse effect of creating a “wait-and-see” attitude among the Nigerian populace, especially university students. Yet studies have continued to ascertain the knowledge base or awareness of students of tertiary institutions on the potential dangers of the disease if students do not attach any serious importance to SCD. In a study, “Assessment of Knowledge, Awareness, and Attitude of Undergraduates toward Sickle Cell Disease in Lagos, Nigeria”, Ebele Uche, Olusola Olowoselu, Benjamin Augustine, Ayobami Ismail, Akinsegun Akinbami, Doyin Dosunmu, and Abdulhafeez Balogun (2017) remarked that the awareness of SCD among the students is high but this awareness did not translate to good overall knowledge about the disease. This underscores the importance of increased public health education on SCD, in order to increase the knowledge base of people about SCD. It also further accentuates the need to examine the media preferences for information sourcing by Nigerian students. In the sociological history of mass communication, it is noted that the emergence of a new medium often affects existing media in several ways such as audience base, credibility and production process. The social media, through the internet provides an alternative platform for expression by citizens against the limited access provided by the traditional media. The receivers of information disseminated by the traditional and social media have come to depend on these sources for information about politics and governance, finance and economy, health and other areas of concern to them. One of such information about sickle cell disorder is the focus of this study. Sickle cell disorder has continued to be a global health problem that presents major challenges to health care systems especially in Africa. As mentioned earlier, in comparison to other chronic diseases and blood disorders, sickle cell disorder remains one of the least understood and puzzling medical conditions by health care workers and the general public, as well as the least funded health challenges by governments and non-governmental organisations. Extant literature reviewed on SCD expresses a dire need for more education and awareness on SCD in Nigeria. This study therefore was designed to specifically find out the knowledge base of sickle cell disorder among university students in South-west Nigeria, especially in relation to the types of media they preferred as giving them the required and best, dependable and factual information on the disease. The knowledge level of the university students is under focus mainly because majority of them would naturally want to get married and settle down to raise children soon after the completion of their university education and are working. At that level, those of them who might be ignorant about the dangers inherent in getting married to partners whose blood groups may result into raising children with SCD may find it difficult to change their decisions. However, if such students have a solid knowledge base before leaving the university and settling down to marriage, chances are that they would be better guided in the choice of life partners particularly to avoid a marriage that would not give them joy in the future.

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 Media Awareness Preferences for Information on Sickle Cell Disorder Among University Students

Although it is relatively compulsory for young men and women who propose marriage in certain churches in Nigeria these days to be counselled about the need to avoid marriages that could result into such avoidable disaster in future, many would-be couples at that level often want to test their faith in God to prevent them from raising children with SCD. Hence, they feel reluctant to change their decisions all in the name of religion or love once they have made up their minds to get married. These group of youths resort to divine and religious sentiments to go ahead with their plans believing that miracles would happen to make them escape such imminent dangers in future. Thus this study has tried to determine the effectiveness of traditional media and social media platforms used for creating awareness on sickle cell disorder among such university students in south west Nigeria where Christianity and Western education first took a strong footing in Nigeria. The idea was to ascertain the preferred group of media between the traditional media and the social media used as tools for creating awareness on sickle cell disorder amongst the students.

History of Sickle Cell Disorder Historians believe that DNA mutations, which were responsible for the first versions of the sickle cell gene, originally arose in various African regions, including Cameroon, Central African Republic, Benin, and Senegal (Jones, 2008). Studies show that the Trans-Atlantic slave trade introduced the sickle cell gene into the Americas and the Caribbean islands. Majority of African slaves, who carried the sickle cell traits to the Caribbean Islands had the specific β-globin gene, (Stuart & Nagel, 2004). Figure 1. Distribution of the sickle cell gene in Africa

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(Source: Google: Retrieved 7th July, 2018).

The dotted lines show the geographical distribution of the sickle cell gene (Stuart & Nagel, 2004). Sickle cell disease is a group of disorders that affects haemoglobin, the molecule in red blood cells that delivers oxygen to cells throughout the body. People with this disorder have atypical haemoglobin molecules called haemoglobin S, which can distort red blood cells into a sickle, or crescent, shape. Signs and

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 Media Awareness Preferences for Information on Sickle Cell Disorder Among University Students

symptoms of sickle cell disease usually begin in early childhood. Characteristic features of this disorder include a low number of red blood cells (anaemia), repeated infections, and periodic episodes of pain. The severity of symptoms varies from person to person. Some people have mild symptoms, while others are frequently hospitalised for more serious complications. When red blood cells sickle, they break down prematurely, which can lead to anaemia and cause shortness of breath, fatigue, and delayed growth and development in children. The rapid breakdown of red blood cells may also cause yellowing of the eyes and skin, which are signs of jaundice. Painful episodes can occur when sickled red blood cells, which are stiff and inflexible, get stuck in small blood vessels. These episodes deprive tissues and organs of oxygen-rich blood and can lead to organ damage, especially in the lungs, kidneys, spleen, and brain. A particularly serious complication of sickle cell disease is high blood pressure in the blood vessels that supply the lungs (pulmonary hypertension). Pulmonary hypertension occurs in about one-third of adults with sickle cell disease and can lead to heart failure.

Efforts of the Federal Government of Nigeria to Create Awareness and Control SCD During the past four decades, the Federal Government of Nigeria has made significant strides in providing funding and research on SCD. At both the University of Ibadan and the Obafemi Awolowo University, Ile-Ife, the Government has created and dedicated research grants for extensive research in collaboration with other foreign universities in advanced countries. There are several government and non-governmental organisations collaborating to find solutions to SCD challenges. In the Federal Ministry of Health efforts have been made to provide screening facilities in support of several research centres located in several Federal Universities in the country. In addition, the Sickle Foundation of Niger is a non-governmental and non –profit making organisation dedicated to the proper care and control of sickle cell disorder. But in spite of the government efforts several Nigerian students who are certainly more vulnerable to contracting the disease are either ignorant or just merely showing “I don’t care’ attitude to the menace of SCD.

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Short History of the University of Ibadan Founded in 1948, The University of Ibadan was for many years a college of the University of London until 1962 when it became a full-fledged independent University. The University which took off with academic programmes in Arts, Science and Medicine, is now a comprehensive citadel of learning with academic programmes in sixteen Faculties namely, Arts, Science, Basic Medical Sciences, Clinical Sciences, Agriculture, the Social Sciences, Education, Veterinary Medicine, Pharmacy, Technology, Law, Public Health, Dentistry, Economics, Renewable Natural Resources and Environmental Design and Management. The Faculties of the Basic Medical Sciences, Clinical Sciences, Public Health and Dentistry are organised as a College of Medicine. Clinical research in the Faculties of Pharmacy and the University College of Medicine had in the past showed evidences of a potential breakthroughs in efforts to find a lasting solution to the challenges of SCD

Short History of Obafemi Awolowo University The Obafemi Awolowo University, Ile-Ife, formerly University of Ife, also in south-western Nigeria, was established by the Western Nigerian Regional Government in 1962. The University was taken over by the 474

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 Media Awareness Preferences for Information on Sickle Cell Disorder Among University Students

Federal Military Government of Nigeria in 1975 together with other similar regional institutions in the Eastern and Northern parts of the country. However, the University of Ife was renamed Obafemi Awolowo University in 1986 in honour of the late Premier of Western Region of Nigeria when the university was established in 1962. The University has eleven Faculties – Agriculture, Arts, Social Sciences, Law and Science. Others are Education, Pharmacy, Technology, Health Sciences, Administration, Environmental Design and Management. At different times in the past media reports had it that the College of Health Sciences and the Pharmacy Faculty had made substantial progress in attempts to find a lasting solution to the problems of sickle cell anaemia. Much as these claims were not denied expectations by Nigerians seemed to have often been dashed soon after the spurious claims.

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Nigerian Students’ Knowledge and the Preferred Media for Awareness Information on SCD Admittedly the SCD is not a pandemic in Nigeria, however, it is a phenomenon that creates a permanent health challenge for any sufferer whose life span may not go beyond 30 years. According to Moronkola and Fadairo (2006), in a cross-sectional survey of the University of Ibadan Christian Pentecostal students, a majority of the study respondents (63.6%) knew their AA genotype, had a high knowledge level of sickle cell disease, knew the benefits of genetic counselling, and had a positive attitude toward sickle cell disease and genetic counselling. In another development, students of Obafemi Awolowo University, Ile-Ife who were carriers of the disease explained how they were able to cope with SCD together with their studies. In a study of the SCD patients Okumdi and Oladele (2013) remarked that the patients had a good knowledge of the disease but faced the challenges of combining caring for themselves and academic pursuit which create problems of adherence and finance for buying drugs and sponsoring their education at the same time. According to the Nigerian Medical Journal (NMJ, 2017), the awareness of SCD among the students may be high but this awareness does not translate to good overall knowledge about the disease. The assertion of NMJ, therefore, underscores the importance of increased public health education on SCD, in order to increase the knowledge about SCD especially among this vulnerable group of youths who are mainly students of tertiary institutions. No wonder there is a large group of students who were “undecided” when asked questions on their preferred sources of awareness and knowledge information either traditional or social as contained in the data gathered by the authors of this article from the University of Ibadan and Obafemi Awolowo University in southwest Nigeria. While maintaining silence on this group of students the authors have focused mainly on those who responded to the questions asked in the instrument used for data collection. The only assumed explanation that could be given with regard to the undecided group of students is that they lack knowledge of the issues at stake on SCD.

RESEARCH METHOD The survey research method was used because the objective of the study was to find out which of the two media systems - traditional or social - was preferred by the students in their search for information that creates awareness, education and knowledge on SCD with reference to the two oldest universities in the south west geopolitical zone of Nigeria. 475

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 Media Awareness Preferences for Information on Sickle Cell Disorder Among University Students

Population, Sample Size and Sampling Technique The two universities used for the study have a combined population of 68, 481 students. Obafemi Awolowo University, Ile-Ife; and the University of Ibadan were purposively selected for the study because they both have Faculties of Pharmacy carrying out research on the control of SCD. Obafemi Awolowo University, which was established in 1962, has a population of about 35,000 students while the University of Ibadan, popularly known as the Premier University in Nigeria, has a population of 33,481 students. A sample size of 300 students was drawn from the two universities. The study used a multi-stage sampling technique for data collection from the two institutions. First, the two universities were stratified into faculties and the first five faculties including that of Pharmacy were used for the studies, making a total of Ten Faculties. The Faculties were: (1) Pharmacy, (2) Medical Sciences (3) Social Sciences, (4) Education, and (5) Natural Sciences. The second stage involved randomly selecting thirty students from each of the Faculties making a total of 300 students. At the Third Stage which was on the administration of the Research Instrument on the respondents, ten Research Assistants (One per Faculty) who had been hired and trained for that purpose followed lecturers into the lecture halls to administer the questionnaire just before the lectures started. In this way, the total number of the research instruments distributed were retrieved for data analysis. However, during the collation and analysis of data 41 of the instruments were voided because they were not properly and adequately filled by the respondents, leaving a total 259 to work with.

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RESULTS Out of the 259 students selected from the 10 faculties of the two universities under study it was discovered that 208 (80%) have knowledge of sickle cell disorder. Another 204 respondents (78.8%) are aware of their sickle cell trait status. It is also interesting to note that 142(54.8%) are aware that People with SCD have low life expectancy. However, those who are not aware of their sickle cell anaemia trait status equal 140 (54.1%). On the question about the definition of sickle cell a total of 223 (86%) students believed that it is an inherited blood disorder. A total of 208 (80%) of the respondents gathered information on SCD from the social media, while 195 (75%) preferred to source information on SCD from the Traditional Media: radio, television, newspapers and magazines. This is not surprising because information on social media could be false and unreliable since social media lacks the gate keeping system. The platforms are for all comers, majority of who are “citizen reporters” without any ethical responsibilities. In this respect, the reliability of information on SCD sourced from the two types of media (traditional and social) was also considered. It is noteworthy that 206 (79.6%) of the students trusted information gathered from the Social media platforms on SCD, while a total of 199 (77%) trusted the information coming from the traditional media on SCD. Those who voted for traditional media as being more reliable amount to 135 (51.9%), while a total of 124 (47%) of the respondents believed that Social media was more reliable. Majority of the students who preferred the traditional media 84 (32%) used to source their information from the television followed by 17 who preferred to source their information on SCD from the radio. Only 7 of them preferred to read newspapers to gather information on SCD. However, under Social Media Platform, 55(21.2%) students preferred using Facebook as means of obtaining information on sickle cell anaemia disorder. This is followed by Twitter 34 (13.1%) Instagram 29 (11.2%), while the least is 476

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 Media Awareness Preferences for Information on Sickle Cell Disorder Among University Students

Whatsapp with 19 (7.3%). When it comes to deciding on the frequency of information from the media, the social media platforms were preferred by the students 161 (62%), while 133 (51%) of the students believed that the traditional media supplies more information on SCD.

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Preferred Media Awareness for Information Dissemination on SCD After a careful analysis of all parameters considered above it was safe to conclude that students’ media preferences on awareness creation on issues of SCD are almost equal. For instance, while 208 (80%) of the respondents gathered information on SCD from the social media, 195 (75%) preferred to source information on SCD from the Traditional Media One major reason given by those who prefer the Social Media Platforms is that the social media platforms are easily accessible, and the respondents are exposed to more social media platforms than the traditional media. They also stated that the social media are more interactive than the traditional media. Those who prefer the traditional media on the other hand, say the traditional media are more reliable. They argued that the contents are scrutinised before publication. It is also noteworthy that a minority group of 10 (3.65%) of the respondents, who chose other sources of information, stated that they would rather get information about sickle cell anaemia disorder from medical practitioners, parents and victims rather than relying on either the traditional mass media of communication or the social media. With a thorough review of all the essential data earlier analysed in the study, one cannot but agree with the findings of O’Mahony and Meenaghan (1988) and Erdogan’s (1999) who asserted that acceptance and favourable response to a message depends on the perception that the audience may have about the trustworthiness of the sources of information. Working on Creating health awareness: a social media enabled collaboration. The influence of traditional media and social media in creating awareness on sickle cell anaemia disorder among the university students, has resulted into an optimistic impact among these students. Most of the respondents 155 (60%) of those who agreed to have been influenced towards knowing their sickle cell trait or status have also become leery about having a child with sickle cell disease. In essence, knowledge about one’s sickle cell trait is the basic step that has to be considered in sickle cell anaemia disorder awareness. With this effect, 73 (28%) students who were hitherto ignorant about their sickle cell trait status were encouraged to have a check-up on their status. Also, regarding to the information on sickle cell anaemia heard from these media, 84 (32%) respondents who knew about their sickle cell anaemia status previously, were also encouraged to become more careful by paying more attention to the type of partners they need and the type of counselling, in order to prevent a sickle cell progeny. Furthermore, 56 (22%) of the respondents who knew about their status but were not aware of the consequences of every genotype were enlightened about the dangers of sickle cell anaemia through series of awareness information disseminated via either the traditional or social media. As a positive impact of the exercise in responding to the research questions 33 (12.8%) respondents were able to obtain information from these mass media on premarital genotype counselling and were therefore positively sensitised. Adum, Ekwugha, Ojiakor and Ndubuisi (2016) worked on Social Media and Unfounded Health Beliefs: An Assessment of Participants’ Response to Health Posts on Epidemics and concluded that undergraduate students are exposed to social media posts on epidemics; and their reactions to suggestions of health actions against epidemics are, to a significant extent, influenced by their beliefs in the gist of health posts on epidemics. In this respect it is the conviction of these researchers that both social and traditional media are equally effective in creating awareness on sickle cell among students of two universities under study. However, 477

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 Media Awareness Preferences for Information on Sickle Cell Disorder Among University Students

the traditional media are more influential in sensitising them to take more precautions especially in the event of choosing a life partner than information received through the social media platforms. It is also noteworthy that information flow from the social media platforms are more frequent than in the traditional media.

CONCLUSION Conclusively, majority of the respondents 208 (80%) asserted that they become more aware on SCD through information gathered provided on the social media than the information provided on the traditional media which was represented by 195 (75%) who attested that they are more aware on SCD through information gathered from the traditional media. It is therefore safe to conclude that both the social media and traditional media are highly effective in creating awareness on sickle cell among university students. From the study, a slightly higher percentage of respondents answered that the social media provides more information on awareness, education and knowledge on SCD more than the traditional media platforms. However, those who believe that the traditional media supplies more reliable information are also in the majority. This is believed to be the ethical standards of traditional media that scrutinise information before it is published whereas such is not the case with social media information. It can be said that both media systems are equally effective in creating awareness, providing information on education and knowledge on SCD among Nigerian university students in south western Nigeria.

RECOMMENDATIONS

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Based on the findings of the study, the following recommendations are made: 1. More information and awareness on SCD should be disseminated and created through the traditional and social media as it has been proven that both are effective; 2. Adequate information and knowledge should be provided by government, non-governmental organisations and individuals about basic facts concerning SCD on the two major media systems studied here i.e. the traditional media…the print and broadcast media as well the social media platforms… Facebook, twitter, Instagram, and Whatsapp, e.t.c.; 3. There is need for more sickle cell screening centres especially within the Nigerian educational institutions; 4. Genotype counselling should be offered to university students because they are more likely to fall victims of the dangers of sickle cell disorder; 5. Health practitioners should use of the Internet more aggressively for health information dissemination and patient care; 6. More governmental organisations should be established for the sole purpose of creating awareness of sickle cell disorder; 7. Training and re-training of health professionals in terms of modern media facilities should be encouraged from time to time; and 8. Information provided through the social media should be thoroughly proofread and vetted before dissemination to ensure reliability of the information. 478

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 Media Awareness Preferences for Information on Sickle Cell Disorder Among University Students

REFERENCES Adum, Ojiakor, & Ndubuisi. (2016). Health Implications and University Students Awareness in Nigeria. International Journal of Communication and Media Studies. https://www.researchgate.net/publication/306363865_Screen_Time Akinyanju, O. O. (2009). National burden of sickle cell disorder and the way forward. University Press Ibadan. Erdogan, Z. B. (1999). Celebrity Endorsement. Literature Review. https://www.tandfonline.com/doi/ abs/10.1362/026725799784870379 Fogg, B. J., Marshall, J., Osipovich, A., Varma, C., & Fang, N. (2000). What makes web sites credible? A report on a large quantitative study. Proceedings of ACM HCI 2001 conference on human factors in computing systems. Galadanci, N., Wudil, B. J., & Balogun, T. M. (2014). Current sickle cell disease management practices in Nigeria. https://www.ncbi.nlm.nih.gov/pubmed/24114193 George, I. O. (2011). Sickle cell anaemia: A survey of associated morbidities in Nigeria. African Journal of Hematology & Oncology, 2(2), 187–190. Jones, P. (2008). Genes & disease sickle cell disease. Info-base Publishing. Liu Y. (2003). What is Interactivity and is it always such a good thing? Implications of definition, person, and situation for the influence of interactivity on advertising effectiveness. Journal of Advertising, 31, 53-64. Noar S.M. (2006). A 10-year retrospective of research in health mass media campaigns: where do we go from here? Journal of Health Communication, 11(1), 21-42. Nwosu, J. O. (2012). SMS as a platform for social discussion during the national minimum debate of 2012. Academic Press. O’Mahony & Meenaghan. (1988). Celebrity Endorsements in Advertising - European/American. http:// www.eajournals.org/wp-content/uploads/Impact-of-Celebrity-Endorsements-on-Consumers

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Obukoadata, P. O., & Abuah, F. A. (2014). Media surveillance function within the context of the Ebola outbreak in Nigeria: Influences and perceptual frames. International Journal of Scientific Research and Innovative Technology, 1(5), 53–66. Okoye, J. S. (2011). Online newspaper readers and response to feedback invitation: A survey of regular readers of The Punch, The Sun, The Guardian and Daily Trust. UNILAG Journal of Communication, 3(5), 1 – 21. Okumdi, M. C. & Oladele, V. A. (2013). Coping With Sickle Cell Anaemia in Nigerian Universities: The Case of Obafemi. Awolowo University, Ile-Ife, Nigeria. doi:10.1080/00981389.2013.779358

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 Media Awareness Preferences for Information on Sickle Cell Disorder Among University Students

Salako, O. A., & Tiamiju, M. A. (2007). Use of search engines for research by postgraduate students of the University of Ibadan, Nigeria. African Journal of Library Archives and Information Science, 7(2), 103–115. Serjeant, G. R. (2013). The natural history of sickle cell disease. Cold Spring Harbor Perspectives in Medicine, 3(10), a011783. doi:10.1101/cshperspect.a011783 PMID:23813607 Stuart, M., & Nagel, R. (2004). Sickle-cell disease. Lancet, 364(9442), 1343–1360. doi:10.1016/S01406736(04)17192-4 PMID:15474138 Taiwo, I. A., Oloyede, O. A., & Dosumu, A. O. (2011). Frequency of sickle cell genotype among the Yorubas in Lagos: Implications for the level of awareness and genetic counseling for sickle cell disease in Nigeria. Journal of Community Genetics, 2(1), 13–18. doi:10.100712687-010-0033-x PMID:22109719 Uche, E., Olowoselu, O., Augustine, B., Ismail, A., Akinbami, A., Dosunmu, A., & Balogun, A. (2017, November-December). An Assessment of Knowledge, Awareness, and Attitude of Undergraduates toward Sickle Cell Disease in Lagos, Nigeria. Nigerian Medical Journal Niger Med J., 58(6), 167–172. doi:10.4103/nmj.NMJ_111_18 PMID:31198270 Wakefield, M. A., Loken, B., & Hornik, R. C. (2010). Use of mass media campaigns to change health behaviour. Lancet, 6(9), 61–71. doi:10.1016/S0140-6736(10)60809-4 PMID:20933263 WHO. (2008). Sickle cell anaemia and other haemoglobin disorders. Retrieved from http://www.who. intel media-centre/factsheet/print Wiley, C., & Sisson, M. (2006). Ethics, accuracy and assumption: The use of face book by students and employers. Paper presented at the Southwestern Ohio Council for Higher Education Special Topics Forum, Dayton, OH. Witte, K., & Allen, M. (2000). A meta-analysis of fear appeals: Implications for effective public health campaigns. Health Education & Behavior, 2(7), 591–615. doi:10.1177/109019810002700506 PMID:11009129 World Health Organisation. (2008). Management of haemoglobin disorders. Proceedings of the Report of Joint WHO-TIF Meeting.

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World Health Organization. (2006). Report by the Secretariat of the Fifty-ninth World Health Assembly, A59(9), 2006.

This research was previously published in Dialectical Perspectives on Media, Health, and Culture in Modern Africa; pages 59-74, copyright year 2021 by Information Science Reference (an imprint of IGI Global).

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Chapter 27

The Role of Social Marketing in Preventing the Spread of Non-Communicable Diseases: Case of Tunisia Ines Mezghani Daoud Carthage University, Tunisia Marwa Meddeb Carthage University, Tunisia

ABSTRACT

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Non-communicable diseases (NCDs) such as obesity, diabetes, cardiovascular diseases, and cancers have become a major health concern for most countries around the world. Different elements such as social, biological, and environmental cause the NCDs. But the only way that one can intentionally modify to avoid these diseases is the desire to reduce risk factors for physical activity, tobacco, and diet. Several prevention strategies have been launched worldwide thorough governmental programs by implementing policies/laws. However, these programs don’t integrate active communicate participation and support with the social community. This chapter aims to bring out the priority of enhancing the level of public awareness of NCDs. To ensure public responsiveness, the focus of this research is to create an effective solution to prevent risky behavior. The authors focus on the construction of “Sahtek,” a social media solution developed on the fundamentals of social marketing, to better coach and promote awareness of NCDs prevention.

DOI: 10.4018/978-1-6684-2414-8.ch027

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 The Role of Social Marketing in Preventing the Spread of Non-Communicable Diseases

INTRODUCTION Non-Communicable Diseases (NCDs) is a real burden to health systems in all regions of the world, and mainly in low and middle-income countries. It represents one of the most pressing challenges facing the world today. The total number of deaths attributed to the NCDs is projected to rise over the coming decade in case of absent significant interventions (World economic forum, 2011). The NCDs, known as the invisible epidemic, poses unique governance challenges: the causes are multifactorial, the affected populations diffuse, and effective responses require sustained multi-sectorial cooperation. Scientific evidence shows that unhealthy diet, physical inactivity, the lack of knowledge and the negative attitudes of the public enhance negative risk factors of NCDs. To avoid more expensive treatment, innovative global governance for health is urgently needed to engage civil society and individuals in the global response to the NCD crisis. Preventive strategy is fundamental to tackle the onset of disease, it occurs under health education, environmental measures and social policy. The ultimate goal is to bring about a change in behaviour or factors affecting community or individuals so that diseases will be prevented from developing. Although national responses are crucially important, community and personal initiatives are badly needed. As global health governance mechanisms aren’t be able to rein in the rise in NCDs, several studies suggest that principles and techniques of social marketing may help to enhance the global awareness of NCDs. Effectively tackling NCDs and their key risk factors requires a detailed understanding of the current status and progress at Tunisia level. Feasible and cost effective interventions must be implemented to reduce the burden and impact of NCDs now and in the future. This chapter will review growing complexity in global governance for NCDs. In the absence, as yet, of a universal standard to advance multi-sectorial global health governance, the chapter will explore whether current governance mechanisms in Tunisia are capable of addressing the determinants of NCDs. This work emphasizes integrated prevention by targeting the two main risk factors: unhealthy diet and physical inactivity. In this process, the chapter proposes to find ways to increase public awareness of NCDs and support NCD prevention and control efforts by using social media solution. Social networks proposed initiatives for the global governance of NCDs, and the challenges and opportunities confronting health actors in their efforts to implement healthy lifestyle to all. For this, the specific objectives of the chapter are first to propose a social media solution with effective preventive and control policy on diet, physical activity and health, second to promote the adoption of more healthful behaviour and finally to promote the multi-stakeholder engagement.

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BACKGROUND: NON-COMMUNICABLE DISEASES A non-communicable disease is a medical condition or disease that is not transmissible from an infected individual to another (NIH, 2007). It is defined as disease of long term; mostly gradual development and it is the main cause of adult mortality and morbidity worldwide (WHO, 2005a). In fact, in the last decade, NCDs have shown an unexpectable evolution and a rapid spread. These can be perceived clearly, as shown in Figure 1, that NCDs are the leading causes of death worldwide, killing more persons each year than all other causes combined. In 2017, a large study conducted by the World Health Organization (WHO, 2017) has shown a clear increase in mortality from NCDs globally in the last thirty years. These pathologies were principally cardiovascular diseases (stroke and heart attacks), chronic respiratory (asthma and chronic obstructive 482

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 The Role of Social Marketing in Preventing the Spread of Non-Communicable Diseases

Figure 1. Causes of worldwide mortality

pulmonary disease), cancers and diabetes. All theses examples are the leading causes of what could be considered nowadays as the invisible epidemic. These NCDs provoke 39.5 million deaths in 2015 and the premature deaths of 15 million people aged 30 to 70 years annually. The prevalence of NCDs is rapidly increasing; while the prevalence of infectious diseases is largely decelerate (Figure 2). It is expected that evolution of non-communicable disease by 2030 will cause “almost three-quarters as many deaths as communicable, maternal, perinatal, and nutritional diseases by 2020, and to exceed them as the most common causes of death by 2030” (WHO, 2010). Tunisia, as shown in Figure 3, doesn’t escape to this global phenomenon (WHO, 2015), the burden of NCDs causes 82,3% of all deaths. Cardiovascular diseases account for 49.2%, cancers 12.3%, respiratory diseases 5.0% and diabetes 4.9% of all deaths. As a result, 17.0% of adults aged 30–70 are expected to die from the four main NCDs.

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Figure 2. Projected global deaths for selected causes, 2004 – 2030

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 The Role of Social Marketing in Preventing the Spread of Non-Communicable Diseases

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Figure 3. Proportional mortality in Tunisia

It is not unexpected therefore that this scourge has inspired research’s interest and that the fields of research into this widespread are several and diverse. Most of these researches are in medicine, pharmacy and public health. These various studies are providing curatives actions based on heavy medical treatments, which represent a high cost to the society. NCDs are a major public health preoccupation that strains global economies. The spending associated to healing care and pain and suffering due to NCDs will double between 2010 and 2030. The global cost of NCDs was 6.3 trillion US dollars in 2010, which is expected to increase to $13 trillion by 2030 (World economic forum, 2011). To bring down the burden of this short-term strategy, the world health organization underscores the importance to apply a holistic approach with multi level policies. This long-term approach combines preventives policies, community-driven initiatives and individual-level prevention to reduce root causes of NCDs. To achieve this global change, a new approach of healthy lifestyle initiatives is needed. Effective communication and meaningful practices set partnerships among stakeholders is essential. Consequently, it is fundamental to identify the different stakeholders, their roles, who they impact and connectivity one to another (Table1) (Griffiths et al, 2007). Stakeholder association is crucial for rising the percentage of people adopting healthy behaviours. To ensure connectivity, coordination of all efforts among key stakeholders, adequate integration and collaboration is essential to implement healthy initiatives. Social marketing through social media offers a new opportunity for key stakeholders to share, to organize and to coordinate interventions. Social marketing aims to influence or encourage people to adopt specific behaviours, which are widely recognized as being beneficial through coordination efforts between the various stakeholders. The marketing research has also suggested the inclusion of an additional P, dedicate to partnership between stakeholder, to the 4 Ps of marketing: product, place, price, and promotion (Lee & Kotler, 2011). This partnership offers a new perspective through policy change to improve healthy lifestyle, to reduce NCD burden, and to drive individual, community, social and economic development.

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 The Role of Social Marketing in Preventing the Spread of Non-Communicable Diseases

Table 1. Key healthy lifestyle stakeholders and their overarching roles Stakeholder

Overarching Roles

Professional organizations

Advocacy, championing healthy lifestyle thought leaders, dissemination of scientific knowledge and practice guidelines, professional meetings

Educational systems

Providing an appropriate healthy lifestyle curriculum at all levels of education, creating a healthy lifestyle environment within the educational setting

Government

Creating, supporting, and implementing legislation and programs that support healthy lifestyle initiatives on a population level

Health care organizations

Integrating healthy lifestyle interventions into the medical model as a standard of care

Insurance industry

Providing mechanisms for coverage of healthy lifestyle initiatives

Nonprofit and community organizations

Advocacy; creating, supporting, and implementing healthy lifestyle initiatives

Media outlets

Disseminating credible healthy lifestyle information to the lay public

Mobile health and technology companies

Bringing technological inventions/advances that support healthy lifestyle initiatives to market

Employers

Creating a healthy lifestyle environment within the workplace, offering healthy lifestyle programming to employees

Food industry

Making healthy food choices available, providing health-conscious nutrition labeling

Health and fitness industry

Providing an infrastructure and professionals capable of offering healthy lifestyle programming to the public

Individuals and families

Consumers of healthy lifestyle initiatives

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ISSUES, CONTROVERSIES AND PROBLEMS: CURRENT NCD PREVENTION MECHANISMS AND ITS EFFECTIVENESS IN TUNISIA Tunisia face multiple health and developmental challenges, especially after the Arabic spring revolution. NCDs tend to receive lesser political attention than to issues with visible and immediate government impact. The results of the research conducted by the World Health Organization (WHO, 2014) shown in Table 2, confirm that there are no significant policies or programs have been made to tackle the problem of NCDs in Tunisia level. However, the only governmental policies are centered on education and/or laws in reducing the use of tobacco. No policies are actually planned or implemented in Tunisia to prevent the spread of NCDs. The fact that there is a lack of local advocacy and limited community participation and there is no urban-level research evidence available to local policymakers and stakeholders. As a result, the chapter proposes to use the social marketing; wich applies commercial marketing strategies to promote public health, as a strategic perspective to change the behaviour of target stakeholders. Moreover the interaction through social media can be used as a tool to raise public health awareness of public information and stakeholder engagement to NCDs.

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 The Role of Social Marketing in Preventing the Spread of Non-Communicable Diseases

Table 2. Tunisian national system response to NCDs Tunisian National System Response to NCDs Has an operational NCD unit/branch or department within the Ministry of Health, or equivalent

No

Has an operational multi-sectoral national policy, strategy or action plan that integrates several NCDs and shared risk factors

No

Has an operational policy, strategy or action plan to reduce the harmful use of alcohol

No

Has an operational policy, strategy or action plan to reduce physical inactivity and/or promote physical activity

No

Has an operational policy, strategy or action plan to reduce the burden of tobacco use

Yes

Has an operational policy, strategy or action plan to reduce unhealthy diet and/or promote healthy diets

No

Has evidence-based national guidelines/protocols/standards for the management of major NCDs through a primary care approach

No

Has an NCD surveillance and monitoring system in place to enable reporting against the nine global NCD targets

No

Has a national, population-based cancer registry

No

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Social Marketing The social marketing was introduced by kotler and Zaltman in (1971) as “design, implementation, and control of programs calculated to influence the acceptability of social ideas, and involving considerations of product, planning, pricing, communication, distribution and marketing research”. In the last years, changes in social marketing have been made, by integrating several features (Fench et al, 2010). First, rely on techniques and principles of commercial marketing specially 4Ps in social marketing campaign. Second, focus on behaviour change “to create, to communicate and deliver value in order to influence target audience behaviours”. Kotler and Lee (2008) highlight four main fields of researchers that social marketing have focused on: health promotion (e.g. tobacco use, drinking, obesity, cancer, blood pressure), environmental protection (e.g. water conservation, litter, forest destruction), injury prevention (e.g. women abuse, suicide, road accident), and community mobilization (e.g. organ or blood donation, vote). Social marketers strategies encompass traditional mass media, but also interactive and digital media to enhance community level outreach public’s attention. In many countries, social marketing researches and strategies are nowadays, at the top of health development and especially in the prevention of NCDs (Douglas et al., 2009). In the United States, social marketing is increasingly being promoted as a fundamental key strategy for prompting voluntary lifestyle behaviors such as smoking, drinking, drug use, and diet (Stead et al, 2007). In the United Kingdom, the advantages of social marketing were recognized by the department of Health, as a key success factor “to build public awareness and change behavior” (Gracia-Marco et al, 2012). Besides these strategies, many social marketing campaigns have been launched and developed such as “let’s move” (United States) supported by Michelle Obama, “Manger bouger” (France) or “Change4Life” (United Kingdom). All these campaigns apply social marketing strategies to transform lifestyle and environmental factors supporting diet and physical activity to reduce the proliferation of NCDs. Social Marketing through community-based approaches is becoming increasingly relevant. It allows shaping markets that are more efficient and decrease the obstacles and increase motivations to behaviours that improve the quality of life for individuals and society (Newton-Wards et al, 2004, Andreason, 1994).

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 The Role of Social Marketing in Preventing the Spread of Non-Communicable Diseases

The use of traditional media such as newspapers, magazines, radio, and television are not a powerful method to reach individuals or community (Brooks, 2000). While, in the digital age, modern mass media, that public are passionate about like Social Media offers a number of benefits including extension of richer and responsive messages to a larger audience, convenience, cost reduction and competitive pricing. In fact, the access for health information is problematic to low income or low education citizen. The Internet provides an incontestable way to implement and spread health related information with nationwide impact. Nowadays, Internet is without contest an important method to disseminate healthy lifestyle information’s to the masses. Internet world stats estimate in June 2017 that the number of Internet users in the world is about 3,88 billion users. The same stats indicate that more than 64% of Internet users accessing social media service on line. Advances in social media are an exclusive way to prevent the spread of NCD and to change mind-sets to promote a Healthy Lifestyle.

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Social Media in Health Care There is a continuing spread of the use of social media generally (Boyd et al 2008) and especially in health care contexts (Thackeray et al, 2008, Dawson, 2010). Several research highlight opportunities that social media offers among health professional (Hu et al, 2010, Sanford, 2010), patient (Liang et al, 2011; Denecke et al, 2009) and the general public (Liang et al, 2011, Kaplan, 2010) to create posts, share, like, and comment on health care content through multisensory communication. Before focusing on social media for health communication, it is important to outline, first, the characteristics of social media. Kaplan and Haenlein, (2010) defined social media as “a group of Internet-based applications that build on the ideological and technological foundations of Web 2.0, and that allow the creation and exchange of user generated content”. Social media encompasses interactive web and mobile platforms through where individuals and communities can share, co-create, or exchange information, ideas, photos, or videos within a virtual network. Besides, it offers opportunities for public health to communicate about health issues, including the prevention of NCDs by using social media platforms. Social media allows users to create peer-to-peer discussion in a way not allowed by traditional media. It can be categorised in several ways to show the different range of social media platforms, such as collaborative projects (eg, Wikipedia), content communities (eg, YouTube) and social networking sites (eg, Facebook) (Kaplan and Haenlein, 2010). The main practices of social media concentrate on rising exchanges with others, and gathering, sharing, and obtaining health messages (Freeman & Chapman, 2007). Various benefits of using social media for health communication were reported. A major advantage of social media for health communication is the accessibility and widening access of health information to a large audience, regardless of race, age, ethnicity, education or locality (Chou at al, 2009). Moen et al, (2009) explain, present patterns of cooperation tend to create an asymmetric relationship between health care provider and patient. This underlines a real need for health providers to develop the role within social media in the health communication. Sedereviciute et al (2011) have suggested that stakeholders need to recognize and understand the social media landscape by developing appropriate strategies. Specially, work out how often and when they should enter into conversations, and be aware of what others are doing and act accordingly. This development of social media is because they are clear, understandable, accessible and affordable. Social media also encourages interaction, communication, and expansion of health-related content by way of multiple channels including Facebook, Twitter, Google, Pinterest and Instagram. According to “Statista, 2017”, Social Media statistics indicate an enormous evolution in 2017 as shown in Figure 4. 487

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 The Role of Social Marketing in Preventing the Spread of Non-Communicable Diseases

This clear shift is attributed towards mobile platforms. Smartphone, tablet apps and mobile web access have facilitated the constant presence of users. The incontestable leader of social media is Facebook by surpassing the 2 billions active users monthly.

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Figure 4. Most famous mass media

Given the widespread use of social media, even among population and groups, there are opportunities to leverage these popular online platforms to support prevention of NCDs. Social media platforms such as Facebook has been gradually used for health prevention and supporting public health efforts, as demonstrated in a recent review of 73 studies (Capurro et al, 2014). To be efficient, the archetype NCDs prevention solution should be developed to reach large audiences with being accessible any times and inexpensive. It should include individuals, families, communities and organizations while inducing voluntary behavioral changes, to truly bring about transformation within individuals. In January 2017, despite its small size, Tunisia ranks 4th in Africa in terms of the number of Internet users. 56% of the global population accessed the Internet with 7.7 million users. Facebook is extremely popular. 6,31 million Tunisians use Facebook for a penetration rate of 50,5%, making Tunisia the second country in Africa in terms of Facebook users (Tunisia digital summit, 2017). These statistics show an obvious increase of Internet usage and validate the use of Facebook as a solution to support the implementation of a Tunisian health policy and to promote the prevention of NCDs. This chapter intends the creation of “Sahtek”, a Facebook page developed on the fundamentals of Social Marketing, to better support awareness of Non-Communicable Disease prevention. The fundamental contribution of this solution is to motivate individuals to take preventive behaviours against NCDs before it is too late. The choice of this type of social media has been motivated by the fact that Facebook offers an influential platform that promotes exposure to health information. It allows the exchange of information easily, flexibly and quickly (Mozas-Moral et al., 2016). The Facebook platform “Sahtek” considers three distinctive dimensions: intensity, richness, and responsiveness of Facebook activity.

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 The Role of Social Marketing in Preventing the Spread of Non-Communicable Diseases

First, intensity is measured by the network size. It is obtained by dividing the number of posts and comments on “Sahtek” Facebook page with the number of fans of that page. A developed flow of posts and comments could represent an opportunity to improve users’ awareness and engagement (Vlachvei & Notta, 2015). The next dimension is richness, obtained qualitatively by the posts made by administer and also the quality of their Facebook page activities. It is measured by the ratio of the number of posts, including videos, photos, or links and the total number of posts. The researchers suggest that messages containing text, pictures, or videos have a higher capacity to deliver information (Daft & Lengel, 1986). In particular, this capacity is amplified if messages include not only text but also pictures. Messages that include pictures and videos require less processing effort because they are easier to understand than messages containing static pictures (Larkin & Simon, 1987, Park & Hopkins, 1992). Evolution from text-only messages to those that contain pictures and video allows more valuable communication to users. These contents are more likely to be detected and shared by users, because they are more engaging and informative (Emerson, 2012). The third and last dimension is responsiveness. It is obtained qualitatively by the degree of interaction between Sahtek Facebook page and users. It measured by dividing the number of comments made by Sahtek Facebook page and the total number of comments. York, 2012 explain that the higher the value of responsiveness, or interactivity, the greater is the exchange of information on NCDs prevention. The following section explores how “Sahtek‟ has been created so as to incorporate the needs of all stakeholders.

SOLUTION AND RECOMMENDATIONS: CREATION OF “SAHTEK”

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“Sahtek” is Facebook solution, which helps individuals, families or communities to learn how to avoid the behavioural risk factors of NCDs, through interaction with healthcare professionals as well as sports coach. Former to the development of “Sahtek‟, the stakeholder needs were gathered through Focus brainstorming, Focus Group Discussions (FGD), interviews, and self-analysis of existing healthcare based Social Networks in Tunisia. After analysis of the results, it was definite that “Sahetek” will be developed as a Facebook solution developed on the fundamentals of Social Marketing. This choice is motivated by the accessibility, the deployability and the cost effective of social media solution. Users of “sahtek” need minimal system requirement as Internet connection and hardware with basic personal computer or smart device. Sahtek is accessible for a range of devices as long as it is Internet enabled.

Features of “SAHTEK” Information is available to guests of “sahtek”, it is essential that visitors are provided adequate information before they can become a member of the page. Therefore, a visitor is able to gather the following information before signing up as a member: • • •

A presentation of “Sahtek”, Current membership of “Sahtek”, Information on NCDs and their behavioural risks, 489

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 The Role of Social Marketing in Preventing the Spread of Non-Communicable Diseases

• • • •

The team of healthcare professionals (doctors, dieticians and Physical coach), In what ways “Sahtek” can help the visitor in the prevention of NCDs, Demonstration video describing the main features of sahtek, The team that manages “Sahtek” and ways in which they can be contacted.

Logo of “Sahtek” A logo is an essential element of communication. It is used in various communication media, both to reinforce the image and to offer a personality to the brand, but also to identify and recognize it. It is a graphical representation that immediately identifies companies, products, services or campaigns in a unique way. A logo should make sense in the mind of the target by conveying a simple and memorable message. The utility of the logo is various as attract and target the audience, promote the image of the importance of NCDs prevention, give identity to the prevention campaign, federate users around the same symbol of adoption a healthy lifestyle and reinforce the impact of messages and opinions of society. The Figure 5 demonstrates the key features of Logo “Sahtek”. Figure 5. The logo of Sahtek

•

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• • •

Name: The name Sahtek means, on the one hand, the adoption of an active lifestyle by increasing physical activity and reducing sedentary time. Keywords: Logo “sahtek” is perceived by the patient as a balance, a change, a health, a wellbeing, a healthy diet, a sport and a lifestyle. Shape: The first half of the apple refers to healthy diet and the second half represents a person in good shape. It supposes that it is essential to eat healthy to be in good health. Choice of Colours: First, green is about hope, well-being, balance, happiness, energy, patience, optimism, youth, and concentration. It symbolizes growth, stability, calm and nature, health, success, freshness, confidence, or security. Green is popular in the field of energy, finance, food, technology and medicines. Second, blue evokes the color of nature, the sea and the sky. In shades of darkness, it reveals truth, trust, loyalty, intelligence and security. In lighter tones, it is associated with freedom, dream and youth. Blue suggests regeneration, the need for evolution, transforma-

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 The Role of Social Marketing in Preventing the Spread of Non-Communicable Diseases

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tion and the need for change. It is popular in the field of energy, medicine, technology, health, and agriculture. The Slogan: Is the catch of our brand. This short phrase easily memorized, intended to hit the spirits and make a promise to the customer: “koul metwezen w koun sportif.” Translated from Arabic as “eat balanced and be sporty”. This slogan aims at counterbalance the current Tunisians behaviors by changing their eating habits, plus their sedentary lifestyle, which are responsible for NCDs.

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Table 3. Sahtek’s Facebook content for the first 2 weeks

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 The Role of Social Marketing in Preventing the Spread of Non-Communicable Diseases

Facebook Content of “Sahtek” To increase users’ awareness of NCDs with the opportunity to communicate efficiently, it is crucial to focus on the quality of the messages and posts. The content of the different posts emphasis sport activity the perception and the choice of food and the importance of sport activity. The style of writing was friendly to reach the maximum of users. The Table 3 summarize the different posts and pictures created for the first 2 weeks. In Tunisia, according to a study made by MEDIANET in 2016, the effectiveness of publications on Facebook is during the period between 10h and 15h with a peak at 11h (Figure 6). It is more relevant to post the publications in this time interval.

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Figure 6. The effectiveness of publications on Facebook in Tunisia

The current study examined preventive and health-related predictors of NCDs by the use of Facebook in an effort to better understand who is accessing and being reached through these emerging communication channels. The results showed that this form of social media have distinctly different use patterns and user characteristics, hence different health communication implications. Among the forms of social media, Facebook by far attract the most users in Tunisian context, making them an obvious target for maximizing the reach and impact of health communication and NCDs prevention. Furthermore, with increasing prevalence of personal wireless devices, communication scientists commonly expect the popularity of social networking applications to continue to grow worldwide. Compared to social media, a much smaller percentage of Tunisian Internet users have reported writing in a blog, twitter or Instagram suggesting a lower prevalence of these media. However, reading and commenting on Facebook may have been a more reliable measure of Internet penetration due to its higher popularity in Tunisian context. Moreover, Facebook presents a tremendous opportunity for NCDs prevention. Particularly so, because Facebook users have been observed to act as important communication stakeholders, not only are they information disseminators, but they play a crucial role in developing the awareness of NCDs through Facebook content and comments.

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 The Role of Social Marketing in Preventing the Spread of Non-Communicable Diseases

A key finding of this study offers new and important implications for NCD communication in this digital age: among Internet users, Facebook is found to penetrate the Tunisian population regardless of education, race, ethnicity, or health care access. Considering implications of NCDs prevention communication efforts, the results of this study suggest that in the future, social media promise to be a way to reach the target population regardless of socioeconomic and health-related characteristics. If stakeholders efforts can enable wilder and more equitable Internet access (eg, increasing broadband access or Free wireless mobile access), thus reducing the digital divide, the potential for impacting the health and NCDs prevention behaviour of the general Tunisian population through social media will be remarkable.

FUTURE RESEARCH DIRECTIONS Despite all efforts to complete this study, a number of limitations need to be highlighted. To these limits, we will associate future paths of research. In the first place, this Facebook solution can be sustained by value added services such as online consultation with doctors or physical trainer or the incorporation of other social networks Twitter or google +. A second limitation is choosing a single online environment such as Facebook. Our study may not be representative of all communities developed on Facebook social network. Thus, future studies should investigate other communities in order to have a rich understanding about the NCDs prevention in Tunisia case. Future research may take into consideration the users individual factors as gender, age, and perceived risk of adopting a sedentary lifestyle. A third limitation concerns the longitude of the study whose practices of NCDs are dynamic and their effects will change with time. Therefore, a longitudinal and in depth study will be necessary in order to fellow the changes of individual’s behaviours and to uncover the variable behind the spread of NCDs in Tunisian context to better target their spread.

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CONCLUSION NCDs are the prominent cause of death worldwide. Preventive action must be taken to stop the number of deaths through NCDs. Several biological, environmental and social factors are the main cause of this spread. Specially, the lifestyle adopted by people provokes the majority of theses diseases. The best NCD prevention action must influence a wide audience to change their behaviours before it is too late. Social marketing is a strategic key to incite individual’s voluntary behavioural changes with the support of social community. Nowadays, traditional social marketing campaigns are insufficient. Therefore, it is fundamental to reinforce them through modern media such as social media. It is in this context that Sahtek was developed as a Facebook solution based on the fundamental of social marketing. Sahtek’s ultimate contribution is to enhance the awareness and inspire individuals to adopt a healthy lifestyle. The facebook page incites populations to actively getting involved in physical activity programs, improved access to information for physical activity and substantial reductions in the intake of sault and unhealthy food. It provides personalized and specific plans and programs through consulting with healthcare professionals.

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REFERENCES Andreasen, A. (1994). Social marketing: Its definition and domain. Journal of Public Policy & Marketing, 13(1), 108–114. Arena, R., Guazzi, M., & Mianov, L. (2015). Healthy lifestyle interventions to combat non-communicable disease. European Heart Journal, 2097–2109. doi:10.1093/eurheartj/ehv207 PMID:26524498 Atun, J., Jaffar, S., Nishtar, S., Knaul, F. M., Barreto, M. L., Nyirenda, M., ... Piot, P. (2013). Improving responsiveness of health systems to non-communicable diseases. Lancet, 381(9867), 690–697. doi:10.1016/S0140-6736(13)60063-X PMID:23410609 Bayo-Moriones, A., Billon, M., & Lera-Lopez, F. (2013). Perceived performance effects of ICT in manufacturing SMEs. Industrial Management & Data Systems, 113(1), 117–135. doi:10.1108/02635571311289700 Boyd, D., & Ellison, B. (2008). Social network sites: Definition, history, and scholarship. Computer Medicine Communication, 13(1), 210–230. doi:10.1111/j.1083-6101.2007.00393.x Brooks R. (2000). The basics of social marketing: how to use marketing change behaviours. University of Washington. Capurro, D., Cole, K., Echavarria, M., Joe, J., Neogi, T., & Turner, A. M. (2014). The Use of Social Networking Sites for Public Health Practice and Research: A Systematic Review. Journal of Medical Internet Research, 16(3), e79. doi:10.2196/jmir.2679 PMID:24642014 Chou, W. Y., Hunt, Y. M., Beckjord, E. B., Moser, R. P., & Hesse, B. W. (2009). Social media use in the United States: Implications for health communication. Journal of Medical Internet Research, 11(4), e48. doi:10.2196/jmir.1249 PMID:19945947 Daft, R. L., & Lengel, R. H. (1986). Organizational information requirements, media richness and structural design. Management Science, 32(5), 554–571. doi:10.1287/mnsc.32.5.554 Dawson, J. (2010). Doctors join patients in going online for health information. New Media Age. Denecke, K., & Nejdl, W. (2009). How valuable is medical social media data? Content analysis of the medical web. Inform Sciences, 179(12), 1870–1880. doi:10.1016/j.ins.2009.01.025 Douglas, E. (2009). Childhood Obesity Prevention in South Africa: Media, Social Influences, and Social Marketing Opportunities. Social Marketing Quarterly, 15, 22-48.

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Emerson, M. F. (2012). Social media marketing from A to Z. The New York Times. Fench, J., Blair-Stevens, C., Merritt, R., & McVey, D. (2010). Social Marketing and Public health, theory and practice. Oxford University Press. Freeman, B., & Chapman, S. (2007). Is “YouTube” telling or selling you something? Tobacco content on the YouTube video-sharing website. Tobacco Control, 16(3), 207–210. doi:10.1136/tc.2007.020024 PMID:17565142 Gracia-Marco, L., Moreno, L., & Vicente-Rodríguez, G. (2012). Impact of Social Marketing in the Prevention of Childhood Obesity. An Advanced in nutrition, an International Review Journal, 6115-6155.

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Grier, S., & Bryant, C. (2005). Social marketing in public health. Annual Review of Public Health, 26(1), 319–339. doi:10.1146/annurev.publhealth.26.021304.144610 PMID:15760292 Griffiths, J., Maggs, H., & George, E. (2007). Stakeholder Involvement. Background paper prepared for the WHO/WEF Joint Event on Preventing Noncommunicable Diseases in the Workplace. Hu, Y., & Sundar, S. (2010). Effects of online health sources on credibility and behavioral Intentions. Communication Research, 37(1), 105–132. doi:10.1177/0093650209351512 Kaplan, A. M., & Haenlein, M. (2010). Users of the world unite! The challenges and opportunities of social media. Business Horizons, 53(1), 59–68. doi:10.1016/j.bushor.2009.09.003 Kietzmann, J. H., Hermkens, K., McCarthy, I. P., & Silvestre, B. S. (2011). Social media? Get serious! Understanding the functional building blocks of social media. Business Horizons, 54(3), 241–251. doi:10.1016/j.bushor.2011.01.005 Kotler, P., & Lee, N. (2008). Social Marketing: Influencing Behaviors for Good. Sage Publications. Kotler, P., & Zaltman, G. (1971). Social marketing: An approach to planned social change. Journal of Marketing, 35(3), 3–12. doi:10.2307/1249783 PMID:12276120 Larkin, J. H., & Simon, H. A. (1987). Why a diagram is (sometimes) worth ten thousand words. Cognitive Science, 11(1), 65–100. doi:10.1111/j.1551-6708.1987.tb00863.x Lee, N., & Kotler, P. (2011). Social Marketing, influencing behaviors for good (4th ed.). Sage Publications, Inc. Liang, B., & Scammon, D. L. (2011). E-Word-of-Mouth on health social networking sites: An opportunity for tailored health communication. Journal of Consumer Behaviour, 10(6), 322–331. doi:10.1002/cb.378 Newton-Ward, Andreasen, & Hastings. (2004). Positioning Social Marketing. Social Marketing Quarterly, 10(3), 17-22. Moen, A., Smørdal, O., & Sem, I. (2009). Web-based resources for peer support - opportunities and challenges. Studies Health Technology Information, 302–306. Mozas-Moral, A., Bernal-Jurado, E., Medina-Viruel, M. J., & Fernández-Uclés, D. (2016). Factors for success in online social networks: An fsQCA approach. Journal of Business Research, 69(11), 5261–5264. doi:10.1016/j.jbusres.2016.04.122

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National Institutes of Health. (2007). Understanding Emerging and Re-emerging Infectious Diseases. Author. Nordqvist, C., Hanberger, L., Timpka, T., & Nordfeldt, S. (2009). Health professionals’ attitudes towards using a Web 2.0 portal for child and adolescent diabetes care: Qualitative study. Journal of Medical Internet Research, 11(2). PMID:19403464 Park, O. C., & Hopkins, R. (1992). Instructional conditions for using dynamic visual displays: A review. Instructional Science, 21(6), 427–449. doi:10.1007/BF00118557

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Sanford, A. A. (2010). “I Can Air My Feelings Instead of Eating Them”: Blogging as Social Support for the Morbidly Obese. Communication Studies, 61(5), 567–584. doi:10.1080/10510974.2010.514676 Sedereviciute, K., & Valentini, C. (2011). Towards a more holistic stakeholder analysis approach. Mapping known and undiscovered stakeholders from social media. International Journal of Strategic Communication, 5(4), 221–239. doi:10.1080/1553118X.2011.592170 Stead, M., Gordon, R., Angus, K., & McDermott, L. (2007). A systematic review of social marketing effectiveness. Health Education, 107(2), 126–191. doi:10.1108/09654280710731548 Thackeray, R., Neiger, B. L., Hanson, C. L., & McKenzie, J. F. (2008). Enhancing promotional strategies within social marketing programs: Use of Web 2.0 social media. Health Promotion Practice, 9(4), 338–343. doi:10.1177/1524839908325335 PMID:18936268 Vlachvei, A., & Notta, O. (2015). Greek Food Manufacturing Firms’ Social Media Efforts: Evidence from Facebook. Procedia: Social and Behavioral Sciences, 175(1), 308–313. Wakefiled, M., Loken, B., & Hornik, R. (2014). Use of mass media campaigns to change health behaviour. HHS Author manuscripts. World economic forum and Harvard school of public health. (2011). The global economic burden of Non communicable diseases. Author. World Health Organization. (2005a). Preventable hospital infections are a major cause of death and disability for patients. WHO. World Health Organization. (2010). Global statue report on non communicable disease. WHO. World Health Organization. (2015). Health profile. Tunisia: WHO. World Health Organization. (2017). Non-communicable disease Progress Monitor. WHO. The Statistics Portal. Most Famous Social Networking Sites as of January 2018. (n.d.). Retrieved from https://www.statista.com/statistics/272014/global-social-networks-ranked-by-number-of-users/

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Medianet. (n.d.). Social Media in Africa: Key Statistical Indicators. Retrieved from http://blog.medianet. com.tn/blog/chiffres-cles-sur-les-reseaux-sociaux-en-afrique-facebook-linkedin-instagram-presenteslafrican

This research was previously published in Security Frameworks in Contemporary Electronic Government; pages 76-95, copyright year 2019 by Information Science Reference (an imprint of IGI Global).

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Section 5

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Technological Tools for Health Literacy Promotion

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Chapter 28

Uberization of Healthcare Lizette Alvarez University of Southern California (USC), USA

ABSTRACT Over the years, health literacy has embodied various forms to aid healthcare decisions. For technology and health literacy to merge, the author examines and discusses how the following three elements can be applied to implement a type of technology and to what audience: 1) time, 2) cost, and 3) engagement. Through focused time, cost, and engagement efforts, healthcare can be optimized without reductions to the quality of information. Due to its rapid spread, information could to be fixed accordingly. This would positively impact the decision-making process for communities and public and private sectors. Benefits outweigh risks related to the implementation of technology and health literacy. Traditional medicine is known to have difficulties adapting to change. However, the risk is too high not to explore the use of technology and health literacy.

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INTRODUCTION Various forms of health literacy (i.e., graphic novels, comic books, brochures, and billboards) have aided in decisions related to healthcare, including health prevention (i.e., early pregnancy care, childhood immunization) and chronic illness (i.e., cancer and human immunodeficiency virus [HIV]). In the mid1990s, healthcare researchers at the University of Southern California (USC) in Los Angeles studied health literacy. Inspired by the research, this chapter aims to creatively and unconventionally educate the public on disorders and diseases in the United States. Graphic novels and comic books served as tools to engage the target audience: monolingual, Spanish-speaking, low literate adults in Los Angeles, California. This population was being missed because of language, cultural, and educational barriers. Evidenced-based evaluations at USC and an international collaboration with the University of Groningen, The Netherlands took place in 2017. The same concept produced positive significant results with outcomes suggesting that “a fotonovela may be a valuable health education format for adults with varying levels of literacy, even if it was developed for a target group with a different cultural background” (van Jagt et al., 2017, p. 284). This resulted in a Dutch audience that became engaged with the presentation and storytelling concept. DOI: 10.4018/978-1-6684-2414-8.ch028

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 Uberization of Healthcare

This chapter will examine the ability to merge technology and health literacy. The author will examine and discuss how the following elements can be applied to specific technology and audiences through: (1) time; (2) cost; and (3) engagement.

DEFINITION According to the Collins English Dictionary, the technology and business concept definition of uberization is “to subject (an industry) to a business model in which services are offered on demand through direct contract between a customer and a supplier, usually via mobile technology” (https://www.collinsdictionary.com/us/dictionary/english/uberize). In this example, uberization conveys how the healthcare industry can benefit from a successful business model and innovative technology.

PROBLEM Research in healthcare and technology has indicated a lack of innovation due to organizations’ poor cooperation in building user applications. “Both public and private sector stakeholders, particularly government agencies and private corporations, will need to collaboratively reduce the gap between the health information ‘haves’ and ‘have-nots’” (Eng et al., 1998, p. 1371). By fast forwarding to 2017, the aforementioned remains problematic. Self-advocacy has become important as patients take healthcare into their own hands. Examples include social media groups for direct patient collaboration or applications developed by the private sector to manage health. Research has also noted that technology would be tailored by “developing applications for the growing diversity of users, funding research on access-related issues” (Eng et al., 1998, p. 1371). This mirrors how healthcare is being tailored through precision medicine and the human genome. Research is advancing at lightning speed. However, it is important to address the lack of disseminated information. A study in the utilization of internet technology suggests that “significant advances in technology access and use could be sparked by developing technology interfaces that are accessible to individuals with limited literacy skills” (Jensen, King, Davis, & Guntziller, 2010, p. 804).

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SOLUTION It is widely recognized that technology and innovation regularly benefit society. These efforts improve speed and costs without compromising quality. Like most inventions, audiences and populations were left out during initial development (for example, radio and television platforms were readily accessible to higher socioeconomic groups). Technology is already economically feasible and available. Yet, there are forgotten groups, including low literate audiences and certain cultures. To achieve potential solutions in electronic health (or e-health), we must “address disparities, several authorities have suggested the need for greater information technology research and investments” (Gibbons, 2005, para. 1). As organizations and individuals adopt technology and innovation in healthcare, they will continue to use creative ways to reach “potential 499

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 Uberization of Healthcare

benefits of e-health applications and possible contribution of the field to overcoming disparities in health and healthcare” (Gibbons, 2005, para. 1). Opportunities exist to include populations that have been left out due to lack of time or high costs in research. As a recent study by Bickmore and Paasche-Orlow (2012, para. 1) in information technology and health literacy discovered: … focused investment of time and energy, technology has the potential for reducing disparities through intelligent, usable, and accessible systems that tailor information, advice, counseling and behavioral support to an individuals need at a given time and place.

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Time Although the value of health literacy is steadily recognized around the world, it fails to efficiently reach its ultimate audiences. Uber, a global company, is a version of uberization. The rideshare transportation company leverages value with technology and on-demand service. Traditional taxis were unable to fill the on-demand niche. On-demand service is now achieved using a specific technology model (i.e., apps, mobile health, telehealth, sms/text, cloud services, or artificial and virtual intelligence). Health literacy has the potential and opportunity to offer “healthcare at your fingertips” accessibility to audiences through an on-demand model. For example, an on-demand health model could deliver cancer information to people who must make immediate decisions on their health or the health of another individual. Access to knowledge must be considered when developing high-quality technology for the dissemination of information. In an example addressing minority health and diabetes, a study investigated the use of “electronic, Web-enabled touch-screen information kiosks … to provide culturally and linguistically appropriate diabetes information to Latino audiences” (Matthews, Darbisi, Sandmann, Galen, & Rubin, 2008, p. 520). Data found that, “users found the kiosks and their functions helpful and usable” (Matthews et al., 2008, p. 520). In regards to this group, prevention and management of diabetes is key at the right time. As in this example, information costs and time management must be considered for strategic dissemination (i.e., a general practitioner visit, classes, or pamphlets). Another example of a time-saving platform and audience involves mobile health (or m-health) and children. m-Health is the practice of medicine and public health supported by mobile devices. Devices include mobile phones, tablet computers, and wearable devices (i.e., a smart watch). A U.S. study published in Telemedicine and e-Health found that “Cognitive behavioral therapy (CBT) for child anxiety, although efficacious, typically requires 16-20 weekly sessions with a therapist” (Pramana, Parmanto, Kendall, & Silk, 2014, p. 419). When targeted at the right population or audience, m-health can effectively deliver information (in vivo). According to Pramana et al. (2014, p. 419), “Integrating an m-health platform within BCBT for anxious children may facilitate involvement in treatment and dissemination of effective procedures.” Some have argued that creating or using the wrong technology platform is a waste of time and economically non-feasible. However, research discussed in this chapter identifies both successful and unsuccessful methods to redirect efforts and increase improvements.

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 Uberization of Healthcare

Cost While working on the fotonovela/graphic novel tool at USC, the author observed that costs remained high for traditional (i.e., print) dissemination methods. These methods also proved to be slow. Brochures, pamphlets, paper, ink, and delivery of the evidence-based research information were stored in cardboard boxes. Therefore, the information was exclusively available to organizations with funding to purchase, distribute, and share information with their targeted audiences. Exclusive availability of information would not exist with the use of technology (for example, an app). The information could be readily and virally spread in a cost-effective manner. Target audiences and communities could access the information at a fraction of traditional costs. Cost effective, accessible devices (i.e., smartphones, tablets, and mobile wearables such as Fitbits) would distribute information through a cost-effective platform. An online article titled Things Are Looking App (2016, para. 9) discussed international healthcare systems and prescriptions: When Britain’s National Health service tested the cost-effectiveness of remote support for patients with chronic obstructive pulmonary disease, it found that an electronic tablet paired with sensors measuring vital signs could result in better care and enormous savings, by enabling early intervention. “Reduced cost” is a dreadful term for the traditional healthcare field for fear of reduced quality. However, innovation has proven to be economically positive for the industry. m-Health and e-health generally use computers, patient monitors, communication satellites, etc. Apps, social media, and telemedicine would also be employed. m-Health has shown positive results in a costly population because “chronically sick are disproportionately costly in any health-care system.” (2016, para. 7) One m-health service app, Diabetes+Me is “already showing that it can improve patient outcomes while reducing costs.” (2016, para. 8) Diabetes+Me is a diabetes management tool on an electronic wearable watch for easy tracking of data. A patient or clinician can track, assess, and create a tailored plan for an individual patient’s needs. In the case of e-health, researchers in The Netherlands reconfirmed that “most articles show eHealth is effective/cost-effective or at least suggest evidence is promising, which is consistent with previous findings” (Elbert et al., 2014, para. 1). The study suggested that attention should be placed in the “development and evaluation of strategies to implement effective/cost-effective eHealth initiatives in daily practice” (Elbert et al., 2014, para. 1). Apps are considered successful tools to both providers and health plans (Hostetter, 2011, para. 18):

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… apps are shown to improve care and reduce costs—by avoiding complications and the need for inperson visits for instance—then they may be adapted by those who benefit from greater efficiency, including providers working in accountable care organization or undercapitalized reimbursement models. It can be anticipated that health plans will help disseminate health literacy in a strategic, cost effective way to optimize health. According to Hostetter (2011, para. 18), “Health plans and integrated delivery systems that rely on such care management tools to reduce costs may also benefit.” As individuals and organizations seek to launch successful applications or high-quality platforms, they must consider the various parts and elements. Using the examples, they can implement a system to study users, identify populations to secure the technology, and determine what is it being applied to wellness, prevention, and chronic diseases. 501

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 Uberization of Healthcare

Audience Engagement Target audiences will benefit from technology while others choose to engage through traditional methods (i.e., paper copies, print, radio, and television). Rural communities without internet access would not use electronic platforms. However, much of the world would be able to readily make use of technology’s on-demand and cost-efficient methods. The target audience would also help researchers, policymakers, and foundations make timely and quality-based decisions to aid patients and communities. Organizations and individuals must assess the type of technology used to engage audiences. To realize successful outcomes, users must study prior examples and strategize how to reach and optimize their healthcare audiences. A 2006 Canadian study noted that in-depth discussions are required to identify the needs of populations using e-health platforms. Otherwise, “electronic health tools provide little value if the intended users lack the skills to effectively engage them” (Norman & Skinner, 2006). A 2013 study in the Journal of Cancer Education found that (Pandey, Hasan, Dubey, & Sarangi, 2012, p. x): There is an increased interest in smart phone applications as a tool for delivery of health-care information. There have been no studies which evaluated the availability and content of cancer-related smartphone applications. In the author’s health literacy study with fotonovelas/graphic novels, it was determined that displaying the printed tool on a technological platform would be timely, cost effective, and engaging to the audience. A 2017 study suggested that “health-related fotonovelas—booklets that portray a dramatic story using photograph and captions—may be effective health communication tools, especially for readers with a low level of literacy” (van Jagt et al., 2017, para. 1). Based on work with fotonovela/graphic novels, the author recommends implementing a technology platform for additional, faster research. These efforts will assist in community-based recruitment efforts and evaluations. In addition, efforts will increase audience engagement and reported positive impacts. With creativity, strategy, and research on positive impact, the healthcare sector will be able to reach broader audiences.

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CONCLUSION Through focused time, cost, and engagement efforts, healthcare can be optimized without reductions to the quality of information. Due to its rapid spread, information could to be fixed accordingly. This would positively impact the decision-making process for communities and public and private sectors. Benefits outweigh risks related to the implementation of technology and health literacy. Traditional medicine is known to have difficulties adapting to change. However, the risk is too high not to explore the use of technology and health literacy.

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 Uberization of Healthcare

REFERENCES Bickmore, T. W., & Paasche-Orlow, M. K. (2012). The role of information technology in health literacy research. Journal of Health Communication, 17(Sup3), 23-29. doi:10.1080/10810730.2012.712626 Elbert, N. J., Os-Medendorp, H. V., Renselaar, W. V., Ekeland, A. G., Roijen, L. H., Raat, H., ... Pasmans, S. G. (2014). Effectiveness and cost-effectiveness of eHealth interventions in somatic diseases: A systematic review of systematic reviews and meta-analyses. Journal of Medical Internet Research, 16(4), e110. doi:10.2196/jmir.2790 PMID:24739471 Eng, T. R., Maxfield, A., Patrick, K., Deering, M. J., Ratzan, S. C., & Gustafson, D. H. (1998). Access to health information and support: A public highway or private road? Journal of the American Medical Association, 280(15), 1371–1375. doi:10.1001/jama.280.15.1371 PMID:9794322 Gibbons, M. C. (2005). A historical overview of health disparities and the potential of eHealth solutions. Journal of Medical Internet Research, 7(5), e50. doi:10.2196/jmir.7.5.e50 PMID:16403714 Hostetter, M. (2011, October/November). Health care quality improvement: There’s an app for that. Quality Matters. Retrieved from http://www.commonwealthfund.org/publications/newsletters/qualitymatters/2011/october-november-2011/in-focus Jensen, J. D., King, A. J., Davis, L. A., & Guntzviller, L. M. (2010). Utilization of internet technology by low-income adults: The role of health literacy, health numeracy, and computer assistance. Journal of Aging and Health, 22(6), 804–826. doi:10.1177/0898264310366161 PMID:20495159 Matthews, P. H., Darbisi, C., Sandmann, L., Galen, R., & Rubin, D. (2008). Disseminating health information and diabetes care for Latinos via electronic information kiosks. Journal of Immigrant and Minority Health, 11(6), 520–526. doi:10.100710903-008-9134-6 PMID:18392935 Norman, C. D., & Skinner, H. A. (2006). eHealth literacy: Essential skills for consumer health in a networked world. Journal of Medical Internet Research, 8(2), e9. doi:10.2196/jmir.8.2.e9 PMID:16867972 Pandey, A., Hasan, S., Dubey, D., & Sarangi, S. (2012). Smartphone apps as a source of cancer information: Changing trends in health information-seeking behavior. Journal of Cancer Education, 28(1), 138–142. doi:10.100713187-012-0446-9 PMID:23275239

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Pramana, G., Parmanto, B., Kendall, P. C., & Silk, J. S. (2014). The SmartCAT: An m-health platform for ecological momentary intervention in child anxiety treatment. Telemedicine Journal and e-Health, 20(5), 419–427. doi:10.1089/tmj.2013.0214 PMID:24579913 Things Are Looking App. (2016, March 10). The Economist. Retrieved from https://www.economist. com/news/business/21694523-mobile-health-apps-are-becoming-more-capable-and-potentially-ratheruseful-things-are-looking van Jagt, R. K., Hoeks, J. C. J., Duizer, E., Baron, M., Molina, G. B., Unger, J. B., & Jansen, C. J. M. (2017). Sweet temptations: How does reading a fotonovela about diabetes affect Dutch adults with different levels of literacy? Health Communication, 284–290. Retrieved online http://www.tandfonline. com/doi/full/10.1080/10410236.2016.1258617 PMID:28094559

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 Uberization of Healthcare

KEY TERMS AND DEFINITIONS Audience Engagement: A metric used in technology and various industries to measure if audiences have an interest in topic and also how long their interest is in the topic. Electronic Health (E-Health): A recent healthcare practice used to disseminate information and communicate through internet, computers and other devices. Health Literacy: A way people understand health information to make appropriate healthcare decisions. Mobile Health (m-Health): General term for use of mobile phone or wireless devices for medical care. Primarily used for health prevention. On-Demand Technology Model: Primarily a business model used to fulfil consumer demand of a product or service immediately. Patient Advocacy: An area of specialization in healthcare that is concerned primarily with one group of patients or disorders. Patient Outcomes: A way to measure patient goals and improve healthcare access and delivery. Technology: The science or knowledge put into practical use to solve problems or invent useful tools. University of Southern California: A leading private research university located in Los Angeles that includes a world renowned medical school amongst other internationally recognized academic programs.

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This research was previously published in Optimizing Health Literacy for Improved Clinical Practices; pages 87-93, copyright year 2018 by Medical Information Science Reference (an imprint of IGI Global).

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Chapter 29

Promises and Challenges of Medical Patient Healthcare Portals in Underserved Communities: The Case of Einstein Medical Center Philadelphia (EMCP) Diane C. Lee Drexel University, USA David Gefen Drexel University, USA

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ABSTRACT As a safety-net medical center that serves many underserved communities, Einstein Medical Center Philadelphia (EMCP) faces many challenges in providing healthcare to its communities. To improve those services, EMCP has released a new IT healthcare portal (app). This chapter describes some of the promises and challenges EMCP is currently facing in their attempts to convince communities in its catchment area to adopt that healthcare portal. The challenges are discussed in the contexts of poor social determinants of health (SDOH), unique social factors, as well as the importance of managing community trust in EMCP within the broader contexts of underserved communities of which the new portal is only part of the story. This is not a typical case of IT adoption. The challenges at hand are not only technical but to a large degree social, dealing in part with issues of cultural diversity, perceived lack of respect, and poor health literacy.

DOI: 10.4018/978-1-6684-2414-8.ch029

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 Promises and Challenges of Medical Patient Healthcare Portals in Underserved Communities

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INTRODUCTION There is growing interest among medical service providers in the social factors that influence the quality and provision of medical services. These social factors, such as income and social status, education, employment, often called social determinants of health (SDOH), are the topic of this chapter. For the urban medically underserved, SDOH influences health profoundly and hinders access to medical care (Anderson, Hsieh, & Alter, 2016). Indeed, dialogue and policy surrounding health reform suggests that SDOH problems might account for nearly one third of annual deaths in the United States despite provisions in the Affordable Care Act to address SDOH (Anderson, Lippert, et al., 2016; Galea, Tracy, Hoggatt, DiMaggio, & Karpati, 2011). There is consensus that in order to address such problems healthcare providers must initiate new practices at what is often the first entry point of care to the medical system, namely the Emergency Department (ED). If the ED is the only consistent source of medical care and medical information for this vulnerable population, as it often is, then technologies such as patient portals could be of much help in enabling patients’ self-management. Self-management could offset some of the strain on medical centers, a point of much importance to EDs, which are dealing with an increasing load of impoverished patients with unmet social needs across the country. Significant disparities exist in access to care and health outcomes across the United States (Wallace, Angier, Huguet, Gaudino, Krist, Dearing et al., 2016). Underserved patient populations experience barriers to accessing and engaging within the complex health system and electronic portals have been proposed as a viable solution to overcome health disparities by offering a potential new way for patients to become more active participants in their healthcare (Wallace et al., 2016). Yet, studies specific to underserved patients suggest that underserved populations may have difficulty accessing these electronic engagement resources, which will reduce portal adoption rates (Wallace et al., 2016). A study conducted by Ancker, Barrón, Rockoff, Hauser, Pichardo, Szerencsy et al. (2011) in a large cohort of underserved patients in New York, identified significant racial and ethnic barriers among patients receiving an access activation code and subsequently using the electronic patient portals. Other studies reported more encouraging results. A study conducted by Zarcadoolas, Vaughon, Czaja, Levy, and Rockoff (2013) using focus groups found users reported finding great value in patient portals that positively impacted communication with providers, and improved knowledge, empowerment, and self-care. In another study, focus group participants were positive about online access to medical records but did express concern about potential loss of privacy and interference with the patient–provider relationship (Dhanireddy, Walker, Reisch, Oster, Delbanco, & Elmore, 2014). A patient portal provides a secure online website that provides convenient access to personal health information. They are distinct from electronic health records that are owned, maintained and updated by healthcare organizations. Patient portals allow patients to interact with their own personal health information. Portals allow patients to securely perform a multitude of tasks that includes: scheduling appointments, retrieving laboratory results, managing medications, and accessing medical history data and other patient education or health information, and communicating with their healthcare provider to answer health questions. The asynchronous patient-provider communication may potentially improve the efficiency healthcare communications and potentially reduce the demand on provider resources (Ammenwerth, Schnell-Inderst, & Hoerbst, 2012). Of the barriers cited impacting portal adoption, building trust and avoiding distrust are crucial in the successful adoption of IT, including medical IT portals. The importance of trust and its influence on portal adoption was examined through ethnographic experiences from Einstein Medical Center Phila506

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 Promises and Challenges of Medical Patient Healthcare Portals in Underserved Communities

delphia (EMCP), an urban medical center, focusing on patients utilizing the ED as the main source for medical care. First, the Chapter presents the importance of addressing the social determinants of health from the ED through Social Emergency Medicine. Emergency physicians caring for an underserved population, who are complicated medically and socially, may need to consider the social determinants underlying health and illness in developing systemic interventions and collaborative partnership with community resources to improve the health of this patient population. Next, social factors and the role of trust is examined as important constructs impacting portal adoption. An overview of Einstein Medical Center, an urban safety net hospital providing the study setting, is described to give context to the culture of the organization and the community served. The remainder of the chapter details the ethnographic experiences that highlight the promises and challenges faced by Einstein Medical Center as it seeks to encourage adoption and use of a patient portal. Patient portals have been shown to have potential for great utility and may be valuable in improving the health of an underserved population through greater engagement in healthcare through online access (Zarcadoolas et al., 2013). For Einstein, increased portal adoption may reduce the overburden of the ED adapting to a more complex patient acuity level while moving in parallel with their primary mission to provide acute and emergency care to all patients who come through their door.

BACKGROUND

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Social Emergency Medicine and the Social Determinants of Health (SDOH) Research has shown that there is reduced portal adoption by medically underserved patients (Wallace et al., 2017). Given that social factors are posited to negatively impact user acceptance of portal technology for patients using the ED as the primary source of medical care, it is important to examine these factors and the impact on the ED environment in closer detail. The social determinants of health are economic and social conditions that affect a wider range of health risks and outcomes. Socioeconomic status (SES), an important component of SDOH, is a composite measure that incorporates economic status, measured by income, social status measured by education, and work status measured by occupation (Adler et al., 1994). Circumstances shaped by the distribution of money, power, and resources influence the risk for disease or vulnerability to a disease or injury. The World Health Organization says that “This unequal distribution of health-damaging experiences is not in any sense a ‘natural’ phenomenon but is the result of a toxic combination of poor social policies, unfair economic arrangements [where the already well-off and healthy become even richer and the poor who are already more likely to be ill become even poorer], and bad politics” (WHO, 2008). Central to community health as an access point to the medical system, emergency medicine is a specialty born of a societal need for equal access to medical care for patients regardless of their socioeconomic status (Anderson, Hsieh, et al., 2016). Thus, the modern ED must consider the interplay between social forces and the emergency care system. A collaborative approach is needed to develop cost-effective interventions to influence the health of individuals and their communities in providing equal access to medical care for all patients regardless of their socioeconomic status. Hence, Social Emergency Medicine creates a framework for emergency medicine as society’s medical and social safety-net (Anderson, Hsieh, et al., 2016).

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 Promises and Challenges of Medical Patient Healthcare Portals in Underserved Communities

The Social Factors in Portal Adoption

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The social context influences portal adoption by placing barriers such as language and cultural differences on initiatives that are key to forging trusting relationships. People build trust with others who they perceive to be like them (Zucker, 1986). Language may function as an indicator of shared identity and may emphasize in-group versus outgroup dynamics. The language of a diverse patient population is derived from experiences and personal connections in their community which may differ from the environment where they are being treated. As trust is culture-dependent, the role of trust in a specific IT for a vulnerable population will be impacted by the perceived cultural similarity that exist between the users and the urban healthcare environment, much as it is in other contexts of IT adoption (Gefen & Ridings, 2003). But this goes both ways: cultural choice of words used by either the provider or the patient, touching, or gestures may also be misinterpreted and hinder building trust. Due to the complexity of the social factors affecting the health of medically underserved patients, physicians may consider using a variety of communication narratives to temper the SDOH barriers in understanding and treating patients that come from different backgrounds with a multitude of problems. If trust is built with underserved patients dependent on ED services where their medical and social issues are addressed, then the opinions of the provider and healthcare organization may be viewed as important in their decision process influencing user behavior towards adopting the IT healthcare portal. In examining IT adoption, Social Identity Theory (SIT) can also be applied as it relates to focusing on how identification with groups affects individuals’ beliefs and behavior. SIT recognizes that people’s self-identity comes from their perception of what social group they feel they belong to and thus may add insight into individual decision-making processes. Gefen and Ridings (2003) show how user acceptance of IT increased based on a belief that the intergroup boundary between them and the IT group was reduced, and they shared the same values. The importance of social identity and its extension to trust underscores the importance of people’s perceptions that they share the same values as the individuals providing the services in making those services more effective. A social emergency medicine agenda that takes an expansive view of the coordinated care of an underserved population may result in a level of understanding and relatedness that positively resonates with patients. The perception that the organization consists of “people like me” or is perceived as willing to embrace diverse backgrounds where values and objectives seem matched to “me” increases trust which in turn is associated with increases in levels of other factors that may contribute to the intention to adopt technology (Warkentin, Sharma, Gefen, Rose, & Pavlou, 2018). As such, the role of trust is important as an antecedent of the acceptance, use of and loyalty towards technology, making it a key factor across the healthcare sector (Abbas, Carroll, & Richardson, 2018).

Managing Trust (and Avoiding Distrust) in Portal Adoption Trust is the belief that another person or organization on whom one depends will behave in a socially acceptable manner and thus, fulfill the trusting parties’ expectations (Gefen, Rose, Warkentin, & Pavlou, 2005; Mayer, Davis, & Schoorman, 1995). Trust has behavioral implications because it is one of the determinants of the behavioral extent to which people are willing to rely on others. In an Internet environment, trust is especially important because visual and social cues that people in other contexts may rely on are missing. Supporting this proposition, Gefen (2000) and Gefen, Karahanna, and Straub (2003), explain that trust is crucial as an enabler of social interactions because it reduces down to manageable 508

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levels the otherwise overwhelming social complexity and uncertainty involved in assessing others’ possible future behaviors, behaviors that cannot always be controlled or anticipated. Research has shown trust-based antecedents are strong predictors that influence user behavior in IT adoption (Benbasat, Gefen, & Pavlou, 2008), including governmental initiatives (Warkentin et al., 2018). To better understand the impact of trust as it relates to IT adoption involves a closer examination of the antecedents of trust. These antecedents are important in understanding trust and its link to user behavior in the context of an underserved patient population that the medical center hopes will adopt their new medical healthcare portal, a new technology. There are two aspects of user behavior to consider in applying these trust beliefs. First, is the trust belief in the provider. The trust that develops between patient and provider is paramount. Patients with medical conditions seek treatment at the ED with the expectation and trust of receiving care from well-meaning and experienced medical providers. This implies the providers are essentially given the benefit of trust in the absence of a history of interaction. However, information asymmetry must be taken into account when considering the physician-patient dyad, where there is an imbalance with the physician presumably knowing a lot and the patient knowing little by comparison. Power and status differences may have important and far reaching implications for perceptions, motivations, and behavior (Bunderson & Reagans, 2011). These differences may also help contextualize strain to the physician-patient dyad. When applied to a vulnerable population, the unequal distribution of power and status between the physician and patient has the potential to adversely affect forming a trust relationship. As a result, during the medical encounter, the patient may not fully understand the information being conveyed about their health condition but may not feel it is safe to question the provider or fear that doing so might lead to negative evaluation affecting their treatment plan. The perceptions of lack of psychological safety and a perceived power differential may cause patients to behave in a more tentative and inhibited way. Without questions raised by the patient, the physician may assume a trusted relationship, when under conditions of unequal power and status the patient and family leave with a lack of understanding about prognosis, resources, and post-discharge care plans. Having trust in the patient portal is another user behavior consideration in the adoption of a healthcare patient IT portal. Regardless of the healthcare communication that may develop to influence use of the portal as a tool for self-management, the specific IT portal must be perceived to be beneficial, easy to use, and include trust building mechanisms. Thus, familiarity or knowledge-based trust with the healthcare organization is an important trust antecedent. That is the case in many business contexts too, such as outsourcing, where the client often gives strong preference to a provider with whom it had had a previous relationship (Gefen & Carmel, 2008; Gefen, Wyss, & Lichtenstein, 2008; Gulati, 1995). In that regard, EMCP is well known in the community. In addition to medical care, patients utilize the hospital for a variety of services. EMCP has demonstrated a dedicated mission to improved quality of life within the community through balanced investments in healthcare and social services. In building trust in the portal, another important consideration is institutional based trust. Institutional based trust refers to a sense of security resulting from guarantees or safety-net reassurances (McKnight, Cummings, & Chervany,1998). If the portal can match patients’ expectations of a typical online tool, there is a greater chance for a high propensity for trust in the IT provider (Gefen et al., 2003). Related to institutional based trust is structural assurances, ie, safeguards built into the website that provides users with a level of perceived security. Patients, similar to online buyers in this context (Gefen et al., 2003), may be more likely to trust an online tool that provides assurances of being reliable and credible for disclosing highly sensitive personal health information (Bansal, Zahedi, & Gefen, 2007, 2010). Studies conducted by Van Velsen, Wildevuur, Flierman, Van Schooten, Tabak, and Hermens (2015) examined 509

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trust in telemedicine, another type of e-health technology, through use of a portal. Results showed trust to be an important factor to users for both the healthcare professionals and the portal technology. The competency level of the healthcare professional contributed to a trusted relationship that developed as early as the initial face-to-face encounter. Trust in the vendor was based on reputation, and trust in the technology formed when the patient perceived control and privacy of the data (Van Velsen et al., 2015). When considering the importance of the antecedents of trust in online environments such as patient portals, distrust is also an important consideration. While trust is built gradually, it can be broken due to an adverse circumstance and replaced with distrust (Pavlou & Gefen, 2005). Negative outcomes may cause distrust even when they are not directly related to the patient such as other patients, or even someone identified as part of the same social group, who came to the ED with a medical problem but left dissatisfied. Hospitals attempt to negate perceived broken trust by seeking feedback about the patient’s experience and responding in a timely manner to expressed concerns when they perceive patient expectations have not been met. In their research on the nature and role of trust in a banking environment, Gefen et al. (2008) posit that trust and distrust are not two sides of the same continuum. Rather, trust is about giving the trustee credit of behaving in an acceptable manner, and in doing so ignoring vulnerabilities. Distrust, on the other hand, is about responding to perceived danger (Dimoka, 2010). Indeed, research shows that the positive impact of trust is attenuated by the effects of psychological contract violation, an occurrence where one party perceives another party has acted opportunistically (Pavlou & Gefen, 2005). Just as a patient’s trust may encourage them to use the new portal, distrust of the physician or the medical center may detract them from doing so. Research studies have shown trust, privacy, and user perceptions to be important elements of online technology adoption (Gefen, Karahanna, & Straub, 2003; Gefen & Straub, 2000). Durkan, Durkin, and Gillen (2003) describe online trust as an association of networked relationships between the parties involved where all partners in the network must be seen as trustworthy for members to willingly assume risk. Extending this network of trust to e-health, in the patient-provider exchange, the provider’s e-health system, e.g. patient portal, can provide structural assurance that the online technology environment is safe and under control. A patient’s willingness to engage in online transactions depends upon users trusting each other and the systems they use to meet, communicate, and conduct transactions (Riegelsberger, Sasse, & McCarthy, 2005). In considering why a given party will have a greater or lesser amount of trust for another party warrants examining the attributes of the trustee. As a set, ability, benevolence, and integrity are the three characteristics that appear to explain a major portion of trustworthiness (Mayer, Davis, & Schoorman, 1995). Individually, each contributes a unique perspective from which to consider the trustee while collectively providing a solid foundation for the empirical study of trust of another party (Mayer et al., 1995). The trustee is deemed to be trustworthy if all three characteristics are high. Yet, trustworthiness should be considered a continuum where all three factors can vary along this continuum. Thus, high trust may be a result of high levels of all three factors but can vary independently of the other (Mayer et al., 1995). Managing trust is a key factor in the ethnographic experiences presented. Consider portal adoption and the influence of the community. Underserved populations may have specific needs and reasons for using technology but may feel left out of providing input into the process of selecting and implementing technologies. Trust becomes important in ensuring the primary focus is on what will be of benefit to the communities rather than perhaps a priority that benefits the organization. As communities become more involved in use of technology, it may be a way of providing people with access to information and resources that encourages self-management and meets their everyday needs. 510

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 Promises and Challenges of Medical Patient Healthcare Portals in Underserved Communities

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An important cultural barrier cited in patient-physician communication has been race and ethnicity. Problems in the patient-provider communication due to cultural differences may contribute to a disparity in the understanding of the diagnosis and associated treatment plan. For the underserved patient population, the “code of the street” takes precedent in the communication process. A provider that shows respect is more likely to be trusted than one who, while not deliberately, appears condescending or “invades” the personal space, making the patient feel like they have been disrespected or uncomfortable and therefore cannot be trusted. African Americans and other ethnic minority patients in race-discordant relationships, such as the environment at Einstein with a predominantly minority population being treated by primarily non-minority providers, report less involvement in medical decision making, less partnership with physicians, lower levels of trust, and lower levels of satisfaction with care (Cooper-Patrick, Gallo, Gonzales, Vu, Powe, Nelson et al., 1999; Doescher, Saver, Franks, & Fiscella, 2000). Therefore, communication and cultural competency programs with implementation of tools such as AIDET that emphasize patient centeredness is an important mechanism by which quality of care for all patients might be improved. Focusing on affective dimensions of communication versus emphasizing instrumental behaviors (information giving and medication counseling) may be more advantageous in building a trust relationship to influence patient behaviors (Cooper-Patrick et al., 1999). Effective communication enables a patient and physician to find points of commonality that in turn may build trust and satisfaction (Street, O’Malley, Cooper, & Haidet, 2008). Studies conducted by Street et al. (2008) that examined perceived personal similarity suggested the physician-patient relationship is strengthened when patients see themselves as similar to their physicians in personal beliefs, values, and communication. Findings reported higher ratings of trust satisfaction, and intention to adhere associated with perceived personal similarity. A patient’s trust in institutions that may develop various health information technologies (HIT), such as healthcare organizations, may influence their likelihood of adopting HIT and could be associated with health literacy levels (Mackert, Mabry-Flynn, Champlin, Donovan, & Pounders, 2016). Studies conducted by Mackert et al. (2016) included trust as a construct in assessing the relationship between health literacy and health information technology application adoption and usage. Results from the study showed patients with lower health literacy were more likely to place trust in healthcare providers. These findings suggest organizations implementing new HIT among lower health literate users should consider partnering with trusted healthcare providers to help ensure adoption (Mackert et al., 2016). Similar arguments that underscore the importance of trust and its influence on portal adoption can be made for portal readiness, access to care and care coordination, and other initiatives needed to ensure that users receive full benefits from technological advances, e.g. patient portal, as a result of engaging with organizations and providers they trust.

Einstein Medical Center Philadelphia: A Safety-Net Hospital A safety-net hospital or health system is defined as those institutions providing care to all patients regardless of their ability to pay. EMCP is a private healthcare safety-net, serving a proportionately higher number of patients regardless of race, religion, national origin, or ability to pay. Most patients are uninsured or receive government insurance, such as Medicaid, Medicare SSI, or Children’s’ Health Insurance Program (CHIP). EMCP, the flagship hospital in the Einstein Healthcare Network, is an academic community medical center situated in North Philadelphia, serving a diverse and disadvantaged community. EMCP’s

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 Promises and Challenges of Medical Patient Healthcare Portals in Underserved Communities

long-standing commitment to providing medical services meets with their recognized responsibility to use resources to elevate the health status of the communities served. Safety-net hospitals play an important role in the nation’s healthcare system, yet often encounter difficult financial positions due to the vulnerable financial state of the patients and lack of sufficient Federal, Commonwealth, and local funding as well as policy changes. As such, EMCP relies on gifts from grateful patients and families, alumni, employees, the community, and other donors that support EMCP’s mission. The culture of the hospital is largely defined by its history. The Albert Einstein Healthcare Network was founded in 1865 in Philadelphia as “The Jewish Hospital”. It was an important institution in the history of the Jewish people in Philadelphia, providing care for the suffering poor of all religions. One of the core missions at that time was the care of Jewish veterans of the Civil War. In addition, during that era, Jewish physicians had difficulty getting admitting privileges at most hospitals. These core values extend to the mission of the organization today to “serve with humanity, humility, and honor, to heal by providing exceptionally intelligent and responsive healthcare and education to a community in need”. To carry out its mission, EMCP offers a wide range of healthcare programs and services, ranging from community-based education programs and preventive medicine to complex care, requiring advanced technology and expertise (www.einstein.edu/about/einstein-legacy). As is a standard practice at most major health systems, the Einstein Health Portal has been deployed to allow patients to be more actively involved in their own health care. However, like other safety-net institutions, EMCP is faced with the challenges of increasing portal adoption for a vulnerable population that is presented with social factors that are barriers to wellness. It means not only addressing questions on how to encourage portal adoption but also addressing social issues that might contribute or hinder portal utilization. Research on the challenges of deploying the portal due to social factors may provide practical value by providing insight into knowing what barriers to expect for targeted support that may increase patient engagement. The Einstein Health Portal provides options for appointment scheduling, review of medications, lab results and clinical summaries from medical visits and the ability to send and receive messages. Figures 1 through 5 show screenshots of the portal interface. The homepage for MY Einstein Health Patient Portal provides a capsule view for user navigation, headings for portal content, and highlights value and security assurances of portal use (Figure 1). Once a patient logs into their personal health information homepage, a summary of records that can be accessed is displayed (Figure 2). In addition to a concise display of visit elements, each topic can be accessed to display more detailed clinical information. Appointments can be scheduled and communication with physicians through messaging is available (Figure 3). The clinical summary documents are archived visits with the physician that can be referenced as needed. Detailed information about a particular clinical element, such as laboratory results are available to view and displayed with reference ranges (Figure 4). Values outside the range are shown highlighted to indicate abnormal values (Figure 5). A link to obtain more information about a specific measure is also included. Although designed with all the key features to support patient engagement, the challenges for an underserved population with health literacy issues may be expressed as difficulties in understanding and in interpreting the clinical information as it is presented. For example, lab results are reported in scientific terms with reference ranges. A link is provided as an option for more detail, but patients with lower education levels and low literacy may not find the information useful if they do not understand how it impacts their health. Clinical summaries are available. However, a message in small print indicates that a PDF reader is required, making it difficult for the elderly or for those with disabilities, such as 512

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 Promises and Challenges of Medical Patient Healthcare Portals in Underserved Communities

suffering from sight impairment, to access the information. Assistance with using the site is provided through FAQs, but those assume that the user can understand and follow the instructions as written.

RESEARCH OBJECTIVE The research objective was to bring, through ethnographic experiences as an Emergency Medicine Healthcare Administrator, an examination of the social disparities in health and healthcare and the significance those have on influencing patients’ participation in their healthcare management and related decisions to adopt technology that may provide value in improving their health outcomes. The value of the knowledge gained may benefit the organization in providing insight into the factors influencing increased patient engagement and technology acceptance to improve health outcomes.

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Figure 1. Homepage for MY Einstein Health Patient Portal

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 Promises and Challenges of Medical Patient Healthcare Portals in Underserved Communities

Figure 2. Summary of records

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Research Methods The methodology applied in this study was ethnography. Ethnographic research is a kind of qualitative research where the researchers immerse themselves in the organization as a way of better understanding hands-on the issues, culture, and challenges at hand over extended periods of time. This methodology is based on cultural anthropology and counts on the social understanding of the experience gained by the researcher rather than interviews or surveys of others. Ethnography is a process by which a culture group is studied as well as an outcome of research as the final written product. Ethnography relies on the participant views that are filtered through the researcher’s scientific perspective to develop an overall cultural interpretation (Creswell & Poth, 2017). The cultural interpretation describes the groups and themes related to the theoretical concepts being explored in the study. The ethnography analysis results in an understanding of how the culture sharing group works, the essence of how it functions, and the group’s way of life (Creswell & Poth, 2017). As a healthcare administrator, practice operations, patient flow, and patient satisfaction dictate close interactions with the patients. Through participant observation, the challenges this patient population faces that impact their care on a daily basis is witnessed first-hand, and that allows for full immersion by the researchers enabling them to describe and interpret the shared and learned patterns of values, behaviors, beliefs, and language and the interaction among members of the culture sharing group under examination (Harris, 2001). It is in the observation of these cases and how patients respond that provides context to their challenges and behaviors that may impact the potential use of a portal and self-management.

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 Promises and Challenges of Medical Patient Healthcare Portals in Underserved Communities

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Figure 3. Appointments and communication through portal

Through observation, the impact of limited resources is seen. For example, the patient who calls 911 for an ambulance to bring them to the hospital but lacks transportation to return home. Behaviors resulting from undereducated and poor health literacy may manifest in prescribed medications not taken correctly because the patient did not understand labeling instructions. Low socioeconomic status may result in patients failing to see their primary care doctor for preventive care or get the recommended diagnostic study because they lack the necessary insurance copay. Other behaviors are observed due to trauma informed care. Many patients are victims of adverse childhood experiences such as physical abuse, verbal abuse, sexual abuse, physical neglect, emotional neglect, or other trauma resulting from violence in their community. Since Einstein is located in a diverse community of disadvantaged patients, often they are seeking medical care from the same place where a relative or friend may have been treated without a positive outcome. Acknowledging the effect these circumstances may have had may change the initial provider question from “what’s wrong with you” to “what happened to you” to understand the best approach to treatment and the potential need for additional social service support. For example, an

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 Promises and Challenges of Medical Patient Healthcare Portals in Underserved Communities

ED nurse communicated to the physician before seeing a patient seeking treatment in the ED that the patient was being uncooperative. When questioned, the patient shared that the treatment room was the same as the one where her relative had died. The provider now had a different context for dealing with her medical condition and recognized her need for a referral for social service support.

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Figure 4. Laboratory results through portal

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 Promises and Challenges of Medical Patient Healthcare Portals in Underserved Communities

Figure 5. Values outside range highlighted in portal

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Ethnographic Experiences from EMCP The vignettes described next are short ethnographic episodes encountered by the researcher. These are brought with the intent of providing short examples that enable the reader to examine the social behaviors of an identifiable group of people by looking for patterns of social organization and worldview systems (Creswell & Poth, 2017). Patient comments for each section are included to support the discussion. The next sections will discuss the value of a healthcare portal in addressing the needs of SDOH populations served by EMCP in the context of the importance of managing trust through the deployment of the EMCP healthcare portal.

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 Promises and Challenges of Medical Patient Healthcare Portals in Underserved Communities

Social Vulnerability in Healthcare King Jr and Wheeler (2007) provide clarity and distinction in referencing social vulnerability in healthcare. The term “underserved patients” refers to patients whose barriers to healthcare are due to lack of accessible services; while also “vulnerable”, these patients’ impediments to care are social or medical that may be related to culture, education, transportation, and language (King Jr & Wheeler, 2007). The inverse care law referenced by Fiscella and Shin (2005) provides context that suggests those patients with the greatest healthcare needs often receive the least adequate healthcare. This phenomenon has implications for healthcare and outcomes for vulnerable populations. Among these populations, the resulting effects of inverse care are greatly amplified due to increased risk factors associated with needing care combined with having poor access to it (Fiscella, 2005; Fiscella & Shin, 2005). Vulnerability factors such as low income, limited education, unemployment, minority status, lack of health insurance, residence in an underserved community, and chronic physical or mental illness collectively converge within individuals, families, and communities that are associated with poorer health and reduced access to adequate care (Fiscella, 2005). Clark (2005) uses the term “underserved” to describe people who lack adequate access to resources, e.g. technology, because of their geographic location, income level, education level, race, ethnicity, or physical capability. Vulnerable populations are also often described as racial and ethnic minorities, low income, undereducated, immigrants, and those lacking English proficiency (Zarcadoolas et al., 2013). Furthermore, such vulnerable populations are more likely to have low literacy as well as low health literacy. There is also strong evidence that links low literacy and low health literacy to poorer health behaviors, disease management skills, and health outcomes (Zarcadoolas et al., 2013). Thus, social vulnerability in healthcare refers to vulnerable patients affected by multiple chronic medical, behavioral, and social problems that interact in complex ways to undermine health that amplify the barriers to care (Fiscella & Shin, 2005).

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The Broader Community IT Needs Perspective Studies show that patient portals are an effective tool for actively engaging patients in managing their healthcare (Wallace et al., 2017). Literature shows that among medically underserved patients presenting to the ED, it is important to diagnose and treat the medical problem, but in order to improve the health of this population, there needs to be an expanded role to also diagnose and treat their social determinants (Anderson, Lippert, Newberry, Bernstein, Alter, & Wang, 2016). Therefore, when it comes to adopting a portal technology, it should not be only about giving patients what the healthcare institutions feel is best but should also address social needs. Understanding the technology needs of the community begins with identifying the primary needs of the community. The daily lives of patients in an underserved community may be impacted by lack of money, power, resources, housing, healthcare, childcare, financial assistance, education, and community unity. Given these needs, can technology be used to meet them? Are the residents in the community aware of available resources to help them meet these needs? Important for community residents are the ability to locate relevant medical information, having basic literacy levels, and having localized community information organized and structured in a way that makes it easy for access. EMCP has gone to great lengths in addressing such needs through its corporate social responsibilities’ programs. Through partnerships with community organizations, EMCP sponsors several programs as part of the organization’s commitment to the health of the communities it serves, such as providing fresh fruits and vegetables to 518

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 Promises and Challenges of Medical Patient Healthcare Portals in Underserved Communities

the community in the summer and fall seasons. In addition, during the summer months, EMCP takes the opportunity to highlight the importance of education by providing books to the children who are standing in line with their parents while the food is being distributed. Einstein delivers heart health education through community wellness events that features free health screenings and cooking demonstrations for heart healthy living as well as sponsoring organized youth sports programs. ED physicians were able to help out a local girls high school that needed physicians to perform health physicals that would allow the students to participate in sports. Limited resources may not permit in-person visitation. Thus, having access to a computer to communicate with family and friends would be of benefit for sharing feelings or happenings about everyday situations. Collaborative efforts with nonprofits in the community (e.g. libraries, community centers, and churches) could also create centralized locations that provide information to solve social problems or make everyday life decisions. Technology has the potential to transform underserved communities because it provides a way for people to gain access to information and resources needed to meet their everyday needs. The patient portal can be a valuable self-management tool for helping an underserved population to help themselves as active participants in their own healthcare. Effective deployment of the portal begins with focusing on the needs of the community that may build trust and then the implementation of the technology to improve health outcomes. Further, the importance of the provider-patient communication cannot be minimized. High levels of provider/patient trust have been found to be conducive to more effective healthcare (Abbas et al., 2018). The following comments highlights how this population self identifies with the community, Yeah, honestly people are scared of using a portal. Because if I go to the doctor, what if something is wrong. How do I deal with that? Financially how do I deal with that? Mentally how do I deal with it? What about my job, can’t lose my job? If you don’t know about it, then it’s not going to hurt you. That’s not a good way to deal with things, if you don’t think about it, it’s not going to happen. I don’t agree but that’s the way people in the community think.

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Often times I search the internet to give a friend advice. Say a friend says my toes been bothering me, I may look that up. Or it may be a symptom I’m having like knee pain and I may look up just to get an idea of what it might be. We look out for people in our community to help each other out. The influence of the community holds particular significance. People in the community value the opinions of others in the community. Social identity and subjective norms where this population self-identifies with their community affects individual beliefs and behaviors and are important in their perceptions in dealing with situations that affect their everyday life. To build trust in a community where individuals have a close connection with each other, the trustee must demonstrate trustworthiness through a high degree of benevolence. The community must believe EMCP wants to do good by helping to improve their health status and the portals will be a way of achieving those positive outcomes.

Provider-Patient Communication Challenges Healthcare communication is critical in establishing trusting professional relationships to enhance patient health. Communication concentrates on sharing medical information as well as recognizing the emotional 519

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 Promises and Challenges of Medical Patient Healthcare Portals in Underserved Communities

needs of the patient exploring concerns, opinions, and potential barriers to care. Patient-centered care seeks to place the patient at the center of the healthcare spectrum that promotes self-management. The Institute of Medicine (IOM) defines patient-centered care as: “Providing care that is respectful of, and responsive to, individual patient preferences, needs and values, and ensuring that patient values guide all clinical decisions” (OneView, 2019). A communication strategy that connects patients with their health information and fosters the patient-healthcare provider relationship may contribute to increased overall patient satisfaction and utilization of healthcare tools that support engagement for safe quality healthcare. Secure Internet based communication portals are being used to enhance asynchronous communications with patients outside of face-to-face interactions. However, it is possible that the low adoption rates observed for an underserved population could be attributed to the fact that a face-to-face encounter with a provider is their preferred method of communication. It may be that it is the flexibility of the interaction where the patient develops a personal relationship with the physician through accessibility, delivery of care in a supportive way, and a unique approach to each patient’s needs that enriches their communication. Conversations the lead author had with two patients recently treated in the ED clearly articulated the feeling of having received better care because of the connection to the physician and the ability of the physician to understand them on a personal level in delivering quality healthcare. One patient shared: it is the personal relationship that I have developed with my primary care physician that is most important that makes me a satisfied patient. I sometimes use the Internet for online health searches to find health information but wait to see my physician to ask if the information is true. The Internet is okay but not as a replacement for talking to my doctor face to face. Another patient said:

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seeing my doctor is how I find out about my health and if my medications are working. I trust her [be] cause she listens to me and cares about me and knows my personal situations and what I need. I don’t own a computer but even if I did, I still want to talk to my doctor to tell me what I should do. Developing a personal physician-patient relationship may be one of the most compelling aspects that serves as the core of effective healthcare communication for patients, and, therefore, managing its partial replacement through a healthcare IT portal is a major challenge. Among other challenges, vulnerable patients may be concerned that web access to records would change and potentially harm their relationship with their doctors. Patients fond of their providers may not want the role of the provider to be diminished by a portal where online care replaces face-to-face interactions. Instead, patients may prefer the benefit of having a basic understanding of their thoughts and intentions as well as the opportunity to expand on their narrative by being comfortable to ask relevant questions in an open and supportive environment. It is the flexibility, accessibility, and quality of the interaction that may influence the development of a shared collaborative relationship. Any effort to engage consumers through technology innovations begins with personalized care that is valued in meeting tailored healthcare needs. The results of a positive patientphysician relationship may lead to greater communication, better understanding, improved diagnostic accuracy, increased feelings of care, and increased trust with their physician. If provider endorsement is one of the most influential factors impacting patient’s adoption as well as continued portal use, then the communication process that builds trust is vital for patient participation and active engagement in 520

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 Promises and Challenges of Medical Patient Healthcare Portals in Underserved Communities

their healthcare management. This is evidenced in comments shared by patients about the influence of the relationship with their provider in their considering portal adoption. I can’t really tell you because I don’t access it, don’t use it. So, what’s easier, you’re talking to the wrong person in that respect. I say that because I don’t use it like that. I have a personal relationship with the docs. On the other hand, I’m sure my sons would rather talk to the doctor on the television or go through a portal. I’m sure that’s what they do. I’m sure they look things up in the portal. Not me. I just don’t. It’s important to understand and have the doctor explain it in way that I can understand. A portal can’t do that. It’s also the office staff. They know me by name, not just a number. Communication is very important. I can relate to my doctor and trust her because she has my best interest at heart. If it seems I don’t understand, she takes the time to go to next level of explanation, explain in a better way. No need to access on my own. I have a trusted physician who knows what I need so I’m comfortable with my primary doctor providing my health information. Do not need to use them. Open and upfront with my doctor who sorts out what’s important and what’s not. Helps to sort out baggage. I’m open to helping mind and body to achieve peace of mind. While technology may be a way of providing this population with access to information and resources, it needs to occur through a trusted mechanism, namely the physician with whom they have a longstanding relationship. When the physician is perceived as competent, the level of trustworthiness is increased. The comments expressed imply that because physicians are perceived to be skilled and knowledgeable about the patient’s medical condition, that the patients trust their opinions and are willing to adhere to their prescribed treatment. Therefore, as trusted pillars in the community, physicians play a key role in influencing behaviors that may make patients more accepting of portal adoption. Incorporating such trusted communication sensitivity into an IT portal is a challenge.

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And, the Need to Acknowledge Cultural Diversity EMCP is located in the North Philadelphia section of the city where the service area encompasses zip codes with a high percentage of medically underserved patients. The ED population is primarily African-American. The team of ED providers is primarily Caucasian. Does the lack of a diverse physician workforce affect the communication and quality of care delivered to a predominantly minority patient population utilizing the ED? The ED faculty recognized this disparity and have tried to address it through improvements in communication. The lead author questioned during a faculty discussion on improving patient-physician communication, the possibility of a need for a cultural competence course. The Medical Director was optimistic about getting faculty comfortable with communication needing to be a starting point. EMCP has embraced AIDET as a communication metric to be utilized at each patient visit: Acknowledge, Identify, Duration, Explain, Time (Braverman, Kunkel, Katz, Katona, Heavens, Miller et al., 2015; Studer, Robinson, & Cook, 2010). However, as beneficial as AIDET is as a communication tool, cultural differences may still impact the patient-physician communication, and, ultimately, medical care. For example, a physician asked a patient his social history about smoking. The patient responded by saying he did “loosies”. Not understanding what was meant by “loosies”, the provider inquired further 521

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 Promises and Challenges of Medical Patient Healthcare Portals in Underserved Communities

and learned “loosies” is a colloquial term often used in urban communities to indicate loose cigarettes from a pack. Now a discussion with the patient about smoking cessation may be appropriate. If there are language barriers between the patients and treating providers, does it impact the treatment plan? In this case, the physician was concerned enough to inquire further, but every provider is different in their approach to the care plan. Potential biases and unfavorable interaction dynamics resulting from a lack of understanding about a patient’s self-reported health conditions due to cultural language barriers has the potential to have significant consequences. While attending a retirement function at Lankenau Hospital, the lead author encountered a nurse who previously worked in the ED at EMCP. She lamented how glad she was to no longer be employed in that “environment” with “those” patients. When asked to explain what she meant, she indicated because of the challenges with an urban patient population the culture was very different from the culture at Lankenau. That is an interesting observation because Lankenau’s location is considered a suburban hospital that also serves an urban community due to its close proximity to patients from West Philadelphia with similar socioeconomic backgrounds as patients in North Philadelphia who utilize the ED as their primary source of care. These experiences highlight the need for ensuring diversity and cultural competence for healthcare professionals as a priority agenda item to address any perceived inequalities in health and healthcare. Patient comments help to understand why the connection to their physician is so important. I can really relate to my doctor. She speaks my language. She always listens to my issues and knows what I need. I didn’t get along with my last doctor at all. He didn’t understand me or try to get into the nitty gritty of my problem. Just find not all doctors are positive or on the same page so that I feel comfortable talking to them.

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Communication training programs for physicians and other health professionals of all ethnic backgrounds should include an emphasis on understanding and addressing the needs of a culturally diverse patient population. The patient-provider connection is especially significant when there is race concordance. In this case, cultural similarity becomes even more of a trustworthiness factor. Patients expressed feeling of relatedness and a certain comfort level from the collective set of characteristics, a high degree of ability, benevolence, and integrity, that contributes to a strong trusting relationship that may be different if the patient-physician relationship was race discordant. Incorporating such cultural sensitivity into an IT portal is another compelling challenge.

PORTAL READINESS CHALLENGES EMCP, like other healthcare organizations, has deployed portals as secure communication tools to enhance patient care via improved patient-provider communications. A potentially false assumption is that once a portal has been deployed, patients will use it as intended. The literature seems to suggest the opposite for a medically underserved population (Wallace et al., 2017). In fact, reduced rates of portal adoption have been observed among underserved populations. Studies have also identified several barriers to 522

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 Promises and Challenges of Medical Patient Healthcare Portals in Underserved Communities

portal adoption: low socioeconomic measures, access, health literacy, and privacy concerns. Even if organizations can overcome these barriers, are the patients prepared to use a portal in managing their care? Managing care through use of a portal is more than learning to navigate an online tool. Complimentary skills are needed to allow for effective management of the underlying activities associated with the information being accessed and record keeping for tracking purposes. Has the patient had experience in maintaining a calendar, setting dates for regular monitoring and noting key milestones? What involvement has there been in their participation in their healthcare? Are they able to manage information regarding treatment and care? If a patient has not been involved in these activities in the context of consumer-focused health information technology, developing and maintaining a system of record keeping of health-related activities may be challenging (Nambisan, 2017). Furthermore, the same factors, namely lack of education and health literacy, impacting this population on the intent to adopt may also play a role as antecedent barriers to portal adoption readiness. That is not to say it cannot be learned. However, the expectation that one can begin this kind of activity without first having some guidance and assistance, may be overly optimistic. On the other hand, experience and involvement in managing personal health records may prove beneficial and even appealing when preparing for and potentially adopting new healthcare portal technology (Nambisan, 2017). Taking an organized approach to record keeping is also important for management of health records. A patient needs to be vested in wanting to keep health records as a proactive way of understanding their health status. A patient may not be inclined to maintain health records through a portal if records have not been maintained electronically or on paper, feeling it is not their responsibility. From the patient’s perspective, once they see a doctor, he or she records the information and updates the patient at each visit on their health status. Such a scenario may be perceived as less stressful and creates fewer worries for patients than owning the task themselves. Patients may view taking on these additional tasks as burdensome, especially given the difficulty in managing daily responsibilities for necessary care. As a result, managing health records through a portal becomes less of a priority, resulting in a potentially lower incentive for self-management. Finally, searching the Internet for general information and using the Internet for health information seeking are not the same activity. However, if a patient has access to the Internet and actively seeks information on diseases, treatments, and other health related concerns, the potential exists for developing positive perceptions about the value of a patient portal (Nambisan, 2017). Just as support may be needed for other portal readiness preparation, addressing health literacy through education and training could serve to influence the attitudes of patients in portal adoption. Patient comments suggest additional preparation may be needed for portal readiness.

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I can never remember how to get into the portal. I think you need your medical record number and I have no idea what that is. Don’t know much about them. The doctor’s office staff was not well versed about it; they only provided pamphlets about using a portal. Getting questions answered is most important; I like personal communication with my doctor to get those answers. Education and training are not only important but essential in preparing this population for portal adoption. Building that trust begins with patients feeling confident because they have acquired the skills necessary in preparing to navigate the proposed technology tool. It needs to be a process that recognizes 523

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 Promises and Challenges of Medical Patient Healthcare Portals in Underserved Communities

the need to assess cognitive ability and information retrieval as key components in designing training and support programs to enhance portal readiness. Benevolence and integrity are important to a lesser degree, but it is gaining confidence in their ability through targeted training programs that may contribute more significantly to trustworthiness. Making the IT portal able to address such problems, including low levels of technology literacy, is yet another challenge to IT portal adoption.

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Addressing the Health Literacy Obstacle Another context in which a healthcare portal could partly alleviate current obstacles concerns health literacy. Research shows that health status is influenced by individual characteristics and lifestyles (Wallace et al., 2017). However, the unique health literacy issues of an underserved population may also significantly impact their health status (Mackert et al., 2016). While the relationship between social factors and health may be easy to observe, understanding and acting upon these issues is often much more difficult (Nutbeam, 2000). A comprehensive approach to health promotion should recognize the importance of social and environmental influences on lifestyle choices, and partly address these issues through improved communication enabled by a healthcare portal. A healthcare portal could come into play in the context of health interventions that seeks to link health promotion activity, the determinants of health, and the resulting health outcomes. An IT portal could be especially important in the context of health literacy (Mackert et al., 2016). Health literacy refers to a set of skills that people need to function effectively in the healthcare environment. These skills include: 1) basic/functional-sufficient basic skills in reading and writing to be able to function in everyday situations; 2) communicative/interactive more advanced cognitive and literacy skills which together with social skills can be used to actively participate in everyday activities to extract information and to derive meaning from different forms of communication; and, 3) critical literacy even more advanced cognitive skills which together with social skills can be applied to critically analyze information and to use that information to exert greater control over life events and situations (Nutbeam, 2000). Health literacy has been cited as a barrier for a medically underserved population, and low levels of it may subsequently have adverse effects on care processes and health outcomes (Irizarry, Dabbs, & Curran, 2015). A healthcare portal could partly alleviate such problems. Another impact of a healthcare portal is clarifying the reason patients come to the ED. Patients with low health literacy may present to the ED with a medical condition perceived as urgent when it may simply be a case of not understanding healthcare instructions or how to take their medication. When the lead author worked in a primary care office, patients were told to bring their medications to the visit so that the doctor could verify their medication regimen. It was not unusual for patients to bring in multiple medication bottles without understanding the appropriate dosage or what diagnosis the medication was being used to treat. The family doctor that the lead author worked for would take the time to fill up pill boxes for a week, sometimes two, of medications the patient was instructed to take because they were not health literate in understanding their medication regimen. In situations such as this, without education and social support regarding taking medications as prescribed, often these patients may end up in the ED. A healthcare portal could play a key role here too. Likewise, the portal may not be considered easy to use if the population accessing it doesn’t understand what’s being reported or misinterprets what’s being reported. The Einstein Health Portal contains documented visit summaries written using clinical terminology. The laboratory results reflect the actual clinical tests. A person with knowledge of healthcare terminology may not have a problem, but a patient 524

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 Promises and Challenges of Medical Patient Healthcare Portals in Underserved Communities

with low health literacy may have difficulty understanding the medical terminology. Will they understand the tests listed under the heading Immunol/virology and the purpose of the reference ranges or that breast tomosynthesis is an advanced type of mammogram for better cancer detection? A healthcare portal that factors literacy into design features could go a long way towards simplifying how medical information is presented in a way that patients can understand. With the other social factors faced by this population, stress resulting from knowing too much medical knowledge may play a role in patients not wanting to actively engage in their healthcare. Having a provider share information is one thing. Seeing it in writing may make it real in reminding them of their health problems and their poor quality of life. The reality of knowing about a disease may not work to a patient’s advantage if instead of seeing the potential positive side of treatment, dwelling on the negative consumes their thoughts. Take the following patient experience. A malignant lump was discovered on a patient who went for a routine mammogram. She was told “it was the best cancer one could have with a negative and positive marker” since it was caught early. She was given a good prognosis following surgery and follow up radiation treatment. Upon completion of her radiation treatment, she became very depressed. Not because the surgery and treatment did not go well, but because she learned additional information that the best cancer is one where both markers would be negative and felt that’s what the doctors should have told her prior to treatment. So instead of focusing on the positive outcomes, she was allowing this additional medical knowledge to negatively impact her recovery. A healthcare portal could be programmed to present such information in a manner more appropriate for that population. Improving health literacy in a population will involve health education as well as helping people to develop confidence to act on healthcare knowledge and the ability to work with and support others. If we are to impact this population, asking a patient to use a portal may not immediately translate into selfmanagement. Adding a trust-building mechanism into social emergency medicine practices of systemic interventions must address training and must include more personal forms of communication and collaborative partnership for a community-based educational outreach. These comments reflect unfavorable attitudes towards portal adoption due to potential literacy challenges faced by this population. Portals, not sure what that is. Not everybody, number one, can afford a computer. I know a lot of people have cell phones but maybe they are worried about minutes on their cell phone and things of that nature. Also, education wise. Not everybody has a higher level of education so it might be something that is confusing.

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Do not like new changes. Not personal, just no connection and confusing and not able to navigate system. Would need to make them easier to use. People in their 60s, 70s, and 80s are harder to teach modern tech. They might be slower to learn with no real interest. For me fine but may not be best for an older crowd who don’t have a computer and unable to work with a patient portal. My generation and younger are technology based and into our cell phones and computers, so it’s a lot easier to use technology to get things done. Portals may not be best for older generation who can’t afford or know how to use a computer. Younger generation’s use of cell phones and computers makes them more adaptable to technology.

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Research Anthology on Improving Health Literacy Through Patient Communication and Mass Media, edited by Association, Information Resources Management, IGI Global, 2021. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/nyulibrary-ebooks/detail.action?docID=6686709. Created from nyulibrary-ebooks on 2021-09-02 06:30:41.

 Promises and Challenges of Medical Patient Healthcare Portals in Underserved Communities

Patients may not be willing to admit it, but health literacy is a real issue. Even though a younger generation may be able to adapt more easily to the technology, low health literacy may still impact individual’s ability to find and use health information. An “on your own model” may not provide the needed support to help patients understand and navigate a portal effectively. Portal readiness assumes that a skill level health literacy must be obtained. This may be accomplished through partnerships with community centers or on-site kiosks that may be an option for training programs in a supportive environment. In this way, the organization builds trust in helping patients to gain the necessary skills (ability) to effectively navigate within a portal, demonstrate care for the patient’s health and well-being (benevolence), and promote the value of a technology designed to improve health outcomes (integrity). Elevating the technology literacy level of the population is yet another challenge to IT portal adoption.

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The Potential of a Healthcare Portal to Improve Access to Care and Care Coordination The potential benefits from a healthcare portal are highlighted by the experiences that patients have. EMCP has a Patient Advocate Department that is charged with allowing patients to raise concerns about their care during their EMCP hospital visits. One of the issues cited with a medically underserved population is their access to care because of financial reasons, which is one of the reasons the ED is used as the primary source of treatment for complex medical and social problems (Shaw, Howard, Clark, Etz, Arya, & Tallia, 2013). Many of the patients have a government plan such as Medicaid or Medicare or are uninsured. Unfortunately, not all physicians participate in the government plans. This means certain services may not be covered, resulting in out of pocket expenses. Moreover, lack of physician participation often means higher associated co-pays, co-insurance, and deductibles. ED treats patients regardless of their ability to pay, which may take care of the immediate medical conditions. However, ongoing chronic disease management or specialty care becomes problematic. A healthcare portal could partly alleviate these cost issues by being a low-cost/free alternative to at least some aspects of care. The ED is notified of complaints in two ways. First, every patient receiving treatment is surveyed to comment on their experience. Written comments, positive, negative, or both are sent to the Department for review. The Department can then make decisions how best to approach the issues including implementing processes for improving the delivery of care. In addition, patient complaints made directly to the Patient Advocate office are reviewed by the Medical Director to determine if the standard of care was followed and to respond to the patient directly about their concerns. Many of the complaints filed indicate patients felt the amount of time they have to wait before being treated was too long. While it may be an unrealistic expectation that a visit to the ED means expedited care, patients routinely share length of time as a dissatisfier in rating their ED experience. One patient shared “when I was finally looked at by a new Dr, I waited 4 hours until I was finally given my prescription and told what to do.” A translated Spanish comment from a patient “when I arrived, they only took my vitals and sent me to the room to wait. Then after 1½ hours, I still had not been seen by a doctor.” Another shared, “I know the ER was very busy that night, but I waited a long time. I even witnessed people leave the ER due to the long wait.” In this regard too, a healthcare portal could partly alleviate these waiting time issues by being an alternative to at least some aspects of ED care. In ongoing efforts to improve the delivery of care, the ED responds by continually assessing patient flow operations to identify areas for process improvement and efficiencies. Two of the operational approaches that the ED has implemented to address timeliness of care issues in handling the high patient 526

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 Promises and Challenges of Medical Patient Healthcare Portals in Underserved Communities

volume are the implementation of Fast Track and Rapid Assessment processes. In Fast Track, a dedicated provider is assigned to patients presenting with non-urgent conditions to expedite treatment time during peak hours. Rapid Assessment moves the sickest patients to triage to quickly diagnose problems and determine next steps for treatment such as ordering labs or diagnostic studies. In addition to dedicated physicians, use of physician extenders, e.g. physician assistants and nurse practitioners, are utilized to support patient care. Positive patient comments are an indicator the processes are working. Comments from a patient survey said “Fast Track is outstanding. It removes the least serious out of the way by treating [them] in a separate area so that more attention can be given to the serious emergency patients.” Patients care about EMCP acknowledging that wait time is a problem and actively addressing ways to improve on it. Continuous process improvement to enhance the patient’s overall experience is an ongoing strategy that may reinforce the formation of a trusting relationship between patients and EMCP providers. In this regard too, a healthcare portal could play a key role by informing patients. Nonetheless, access to care remains an issue often due to limited financial resources. Patient comments provide context to why the ED continues to be a point of entry to the healthcare system. People don’t go to the doctor, let alone use a portal. I find that people shy away from doctors because it cost money. So, if you cannot afford it, a lot of times you reach out to these clinical websites such as Web MD to diagnose yourself. That’s what Health Fairs do to help people who don’t have any money to do screenings. On one hand, yes, the patient needs to be responsible. But not everybody has the ability to do that because it cost money. When you don’t have any money, you don’t do screenings. They don’t even have insurance or the insurance they do have is not good enough because they have to spend too much money for these tests.

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The lack of health insurance limits access to care. Without insurance, families may experience worse health and medical debt, which may also result in the costly use of inappropriate care, such as the ED and avoidable hospitalizations (Fiscella & Shin, 2005). Low income patients are disproportionately affected by rising healthcare costs and a trend toward greater burden of costs to the patient. Therefore, emergency physicians may continue to face the daunting task of providing care to a large volume of vulnerable patients seeking care in the emergency room (Anderson et al., 2016). However, by developing systemic interventions, collaborating with community partners and advocating for policies that will improve the health of patients may contribute to building patient trust. The ED may not be able to solve all problems, but through collaborative relationships that serve to expand access, enabled in part by an IT portal, increased trust may be gained to influence patient behavior toward acceptance of technology designed for greater self-management.

Addressing the Respect Obstacle to Healthcare Portal Adoption A patient’s social status should not dictate the type of treatment one can expect to receive. One of the most serious offenses, for the medically underserved patient, may be what is perceived as disrespect by the provider not listening or taking for granted the seriousness of their medical condition. Patients want empathy, acknowledgement of their concerns, and to be treated with respect regardless of their socioeconomic status. Note the following quotes that highlight patient concerns. “They weren’t willing to listen to my situation at all unless I immediately went into triage which they explained was only about 527

Research Anthology on Improving Health Literacy Through Patient Communication and Mass Media, edited by Association, Information Resources Management, IGI Global, 2021. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/nyulibrary-ebooks/detail.action?docID=6686709. Created from nyulibrary-ebooks on 2021-09-02 06:30:41.

 Promises and Challenges of Medical Patient Healthcare Portals in Underserved Communities

taking my temperature and blood pressure. I explained this was done twice in the ambulance”. Others commented, “During my visit while passing the nurses station in the ER, I could hear the nurses and doctors talking about my reason for visit”, or “after telling the doctor my symptoms, I expected her to come back to say what her findings were, not wait until I was being discharged.” A patient’s husband from another culture for religious reasons insisted that his wife should be seen by a female physician but felt like he was getting pushback from the treating physician. These are realities that need to be addressed in a way where the patient and family members feel respected and accommodated to the best ability of the institution or provided with reasons or alternatives if it cannot be met. Allowing patients to specify their needs and clearly communicating what services can be offered may help to alleviate such problems, and a healthcare portal could be part of that solution. The belief that somehow a patient should be grateful for the care given and accept any type of behavior by medical personnel while being treated has been a pervasive perception for a population that feels they have limited options. EMCP understands the changing healthcare environment and the need for more focus on delivering high quality care and a consistently great experience when interacting with patients. This means holding the organization accountable for behaviors or actions that can be improved or need to change. It also means holding employees accountable to create and maintain a culture where excellence is expected from everyone. To that end, EMCP has developed uniform Standards of Behavior to define what it means to deliver a great patient experience. These Standards of Behavior include Respect, Empathy, Responsibility, Affinity, and Integrity. Listening was recently added as the newest standard in practice. Although physicians and medical personnel think they listen well, given the many demands of a busy ED, it may be perceived by the patient that the doctor is rushing through a conversation without appearing to listen carefully. Developing the standards is the first step, but it entails putting ideals into actions which echoes the sentiment, actions speak louder than words. The Standards of Behavior are concrete examples of how every EMCP employee should act. Respect is about valuing others and recognizing diversity within the patient population to be sensitive to age, color, culture, disability, education, gender, gender identity, nationality, race, religion, and all other forms of diversity. Front line employees from across EMCP who consistently model great behavior and have repeatedly shown how they can help to drive change were instrumental in developing the Standards of Behavior. These standards are key to EMCP’s continued growth and success and the foundation for efforts in providing the best possible patient experience and respect for the population being treated. For example, these comments highlight situations where patients perceive lack of respectful behavior.

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A lot of times people get nervous when they go to the doctors because of all the questions they have to answer. Then if you don’t know the answers, the doctor talks down to you and you don’t want to come back. Or they hardly ask you any questions at all, like going through the motion but not really caring. Not everybody goes to college but that doesn’t mean you don’t understand what’s going on. I needed to see a specialist because of my heart problem but I couldn’t get an appointment because the doctor didn’t take my insurance. I work hard like everybody else but because of my insurance, the receptionist acted like I wasn’t good enough to be seen. Patients want to have a positive clinical experience. The comments shared inherently demonstrate factors that may cause patients to have a lack of trust in the health systems. That, in turn, may make it 528

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 Promises and Challenges of Medical Patient Healthcare Portals in Underserved Communities

harder for them to access care as well as increase their concerns about not being in control as a result of their social position. Compassion, empathy, and connection with their provider are important to that interaction where the patient is made to feel like they are equal. The factors that pose barriers for underserved patients, such as low income, education, low health literacy may also result in physician biases that undermine constructive communication. Trust is based upon expectations on how another person will behave, based on their actions (Mayer et al., 1995). If this population does not judge the physician or systems to be trustworthy due to their social conditions, they may not feel the relationship is in their best interest and may not be as receptive to a message that encourages self-empowerment in their healthcare.

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What Else Needs to Be Done to Ensure Healthcare Portal Adoption Research shows that across IT types, perceived usefulness and perceived ease of use (Davis, 1989) are significant predictors of IT adoption, and this applies to portal adoption too (Dou et al., 2017). More specifically, perceived ease of use influences perceived usefulness, and both combine to affect adoption intentions which is highly correlated with subsequent actual use of an IT (Taylor & Todd, 1995). The EMCP portal design has all the elements for patient self-management but could be enhanced with “bells and whistles” to make the site more visually appealing. Perceptions of simplicity in navigating the portal may pose challenges as well. Since navigating through the site may not be very intuitive, it may be useful to have kiosks in key EMCP hospital areas where patients may be able to access the tool and have available staff who can observe the mechanics of use, provide education, instruction, and answer questions about things that the patients may not understand. It would also be a good opportunity to obtain feedback about how patients view the portal and how easy they find it to use. That may be valuable in customizing design features for a vulnerable population needing support. Increased marketing is another strategy to promote the healthcare IT portal. The lack of awareness and access of the Einstein Health Patient Portal has been challenging for the organization. EMCP recognizes that patient portals are a standard practice as a tool to help patients be more actively involved in their own healthcare. However, there needs to be clear direction about portal registration and its continued use as a means of accessing their medical records and communicating with EMCP physicians and office staff. EMCP conducted a patient enrollment campaign a couple years ago. Patients registered, but there has been continued concern about adoption rates and tracking of usage frequency patterns. A major concern expressed by patients was difficulty in accessing the system after registration because of the need for the patient’s medical record number (MRN), date of birth, and the last 4 digits of their Social Security Number. Since MRN is not information a patient is likely to remember after a medical visit, many patients simply did not continue use. In addition, it was also not clear how patients were invited to participate. Some patients were told they could self-register by going online or downloading the app. Others were advised to ask their healthcare provider about self-registration. Front office staff had no way of knowing who had already registered, so they also did not ask patients if they had an interest in registering. EMCP has recently initiated another marketing effort with improved access. The MRN is no longer needed, just an email address. An icon has been placed in the system so that staff can easily identify if a patient has an account. In the event that the front office staff did not ask the patient about signing up for the portal, the Medical Assistant has been instructed to reinforce the message when the patient is having vitals taken. Systems are not in place to register patients presenting to the ED for the health portal. However, leadership is aware that since the ED is often the primary source of entry into the healthcare system, inviting portal registration at the time of an ED visit is an opportunity to promote 529

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 Promises and Challenges of Medical Patient Healthcare Portals in Underserved Communities

linkage to primary care where they can receive ongoing monitored care and keep them connected within the Einstein network. ED patients who are aware of the portal have expressed interest as shared in some of their comments. Portals make it easier to communicate, like making appointments and updating personal information. I might use it if more appealing. I mean, nice to look at, colorful and easy to find the information you want. The less that you have to do when you go into the office the better. You can fill out information before you get there, you can do that in your home in a relaxed environment. If you don’t bring your pill bottles with you, maybe taking multiple medications and don’t bring them all, maybe you forgot, running late, things happen when you’re going to the office, patient portals are a lot more helpful because you can sit at your pace, upload your information. You can put in your medical history, can put in past medical surgical family history, medication history right then and there to take away that worry you may be going into the office with. I like it the way it is for me. For somebody else, I’m sure there would be a lot of good options. What if my doctor left and went somewhere else? Now I would be forced to do the portal and maybe not call my doctor anytime I want to and get information. Well, I suppose the portal would probably be a good thing. Anything that’s not the same. If you give me a ton of options, some would be better, some would be over my head, a little too easy. I think as long as I have options, then that’s probably the key. Just being able to have options. Despite the challenges, this population shows interest in portal adoption provided that its use and ease of use are demonstrated to be of value. However, patients must perceive a high degree of ability, benevolence, and integrity to consider the organization to be trustworthy. Through encouraging and supportive initiatives that will meet the needs and wants of users, there is potential in building trusting relationships for developing a framework to serve underserved communities with instructional technologies.

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The Case of John Even with the passage of healthcare reform, anticipated increases in ED visits are projected, especially among low income groups presented with medical and unmet social needs (Anderson et al., 2016; Medford-Davis, Eswaran, Shah, & Dark, 2015). Anderson, Lippert, et al. (2016) describe the ED as the window into the community which fully frames the contributions of the social determinants underlying health and illness. Consider the following example. John’s (a pseudonym) last visit to the ED was due to prolonged dizziness and headaches symptoms resulting from his uncontrolled hypertension. Other medical conditions included being on oxygen for chronic obstructive pulmonary disease, ambulatory dysfunction (amputee), and a recovering drug addict. In preparing for his discharge, John indicated he had housing problems but would rather be homeless than return to the residence of his brother where the living conditions were not suitable. Medically, John was stable to be discharged but his social circumstances dictated a coordinated intervention for transition to a more appropriate outpatient setting where his medical condition could be monitored on an ongoing basis. The provider decided to admit John to

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 Promises and Challenges of Medical Patient Healthcare Portals in Underserved Communities

the observation unit for 24 hours to monitor his blood pressure, consult physical therapy to address his mobility, and request social services to find him suitable temporary housing. Cases like John’s, treated routinely at EMCP, are similar to those treated in other urban EDs across the country. Still, there remains a need for process efficiency, costs savings and improved health outcomes in the delivery of quality healthcare. Patients impacted by SDOH may sometimes be mistakenly labeled as “frequent flyers” who are non-compliant. That is not always a fair description. Often, SDOH patients may visit the ER frequently because they are seeking not only medical care but may need a social support system to address housing instability, poor access to care, food insecurity, and refuge. Addressing issues related to SDOH means recognizing that barriers exist for a marginalized population, and consequently the need to develop systemic interventions to engage patients as active participants in their healthcare. But doing so requires the development of trust. Such a level of trust may be created when the patient realizes that the hospital is acting in their best interest, and this might consequently influence their attitude and behavior towards portal technology adoption too.

LIMITATIONS The conclusions drawn should be considered in the context of a few limitations worth noting. First, the research is limited by the geographic location of EMCP, the healthcare providers, and the patients. The culture and characteristics of the urban setting of the Philadelphia medical center may be different than that of other cities. Second, the study was limited to patients who were seen in the ED at Einstein Medical Center Philadelphia for discreet encounters. Even though EMCP serves a predominantly underserved population, the results may not be generalizable to the entire patient population since the experiences of patients utilizing other hospital services may have established ongoing provider relationships that influence their experiences differently. Within this context there may also be unique characteristics of the underserved population EMCP is treating that may be different than those encountered by other strata such as the elderly or disabled. While visually appealing and color formats may be desired for the study population, inappropriate font sizes, low contrast, cluttering of web page and use of dynamic and flashing objects are barriers for disabled patients. Computer literacy and anxiety, cognitive impairment (memory), health literacy, and physical limitations present a different set of challenges for an elderly population that may impact their use of a patient portal differently.

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SUMMARY There are many benefits to be gained from a healthcare IT portal, especially in the case of medically underserved populations. Patient portals provide a potential opportunity to engage patients to become more active in their healthcare. And yet, there are numerous issues that make its adoption challenging, especially for underserved populations. In addition to the technical challenges, social issues are a major factor where issues of cultural diversity, perceived lack of respect, and poor health literacy provide a complexity that is not easily resolved. As the ethnographic experiences imply, the social determinants of health, underlying health, and illness may warrant adapting a new perspective as to how to influence downstream health outcomes. These social factors and a trust building process are essential components affecting the shared patterns of behavior, beliefs, and language on this cultural group. The trustworthiness 531

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 Promises and Challenges of Medical Patient Healthcare Portals in Underserved Communities

of EMCP influenced each aspect examined. The interrelationship of ability, benevolence, and integrity are important to trust in ensuring a community-focus when considering a pathway for implementing a new technology. The strength of the provider-patient relationship requires also considering issues of cultural competence, physician-patient race discordance, training, and support initiatives to ensure portal readiness and health literacy. Meeting patients at their need, valuing input, personal forms of communication, and collaborative community partnership are strategies that may help to pave the way for educating and preparing patients for portal adoption. This may be achieved by providing “community technology centers” where patients can access the Internet, participate in literacy and other educational programs as well as utilize other resources such as assistance with insurance enrollment. Finally, adhering to the “Code of the Street” levels the playing field from the patients’ perspective which makes them feel respected and builds trust that may make patients more receptive to the message of the value of adopting a portal as a tool for managing their healthcare.

REFERENCES Abbas, R. M., Carroll, N., & Richardson, I. (2018). in technology we trust: Extending TAM from a healthcare technology perspective. Paper presented at the 2018 IEEE International Conference on Healthcare Informatics (ICHI). 10.1109/ICHI.2018.00051 Adler, N. E., Boyce, T., Chesney, M. A., Cohen, S., Folkman, S., Kahn, R. L., & Syme, S. L. (1994). Socioeconomic status and health: The challenge of the gradient. The American Psychologist, 49(1), 15–24. doi:10.1037/0003-066X.49.1.15 PMID:8122813 Agar, M. H. (1996). The professional stranger: An informal introduction to ethnography. New York, NY: Academic Press. Ammenwerth, E., Schnell-Inderst, P., & Hoerbst, A. (2012). The impact of electronic patient portals on patient care: A systematic review of controlled trials. Journal of Medical Internet Research, 14(6), e162. doi:10.2196/jmir.2238 PMID:23183044 Ancker, J. S., Barrón, Y., Rockoff, M. L., Hauser, D., Pichardo, M., Szerencsy, A., & Calman, N. (2011). Use of an electronic patient portal among disadvantaged populations. Journal of General Internal Medicine, 26(10), 1117–1123. doi:10.100711606-011-1749-y PMID:21647748

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Anderson, E. S., Hsieh, D. M., & Alter, H. J. (2016). Social emergency medicine: Embracing the dual role of the emergency department in acute care and population health. Annals of Emergency Medicine, 68(1), 21–25. doi:10.1016/j.annemergmed.2016.01.005 PMID:26921967 Anderson, E. S., Lippert, S., Newberry, J., Bernstein, E., Alter, H. J., & Wang, N. E. (2016). Addressing social determinants of health from the emergency department through social emergency medicine. The Western Journal of Emergency Medicine, 17(4), 487–489. doi:10.5811/westjem.2016.5.30240 PMID:27429706 Bansal, G., Zahedi, F. M., & Gefen, D. (2007). The impact of personal dispositions on privacy and trust in disclosing health information online. In Proceedings of the AMCIS, Keystone, Colorado.

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 Promises and Challenges of Medical Patient Healthcare Portals in Underserved Communities

Bansal, G., Zahedi, F. M., & Gefen, D. (2010). The impact of personal dispositions on information sensitivity, privacy concern and trust in disclosing health information online. Decision Support Systems, 49(2), 138–150. doi:10.1016/j.dss.2010.01.010 Bansal, G., Zahedi, F. M., & Gefen, D. (2016). Do context and personality matter? Trust and privacy concerns in disclosing private information online. Information & Management, 53(1), 1–21. doi:10.1016/j. im.2015.08.001 Benbasat, I., Gefen, D., & Pavlou, P. A. (2008). Introduction to the JMIS special issue trust in online environments. Journal of MIS, 25(1), 5–12. Braverman, A. M., Kunkel, E. J., Katz, L., Katona, A., Heavens, T., Miller, A., & Arfaa, J. J. (2015). Do I buy it? How AIDET™ training changes residents’ values about patient care. Journal of Patient Experience, 2(1), 13–20. doi:10.1177/237437431500200104 PMID:28725811 Bunderson, J. S., & Reagans, R. E. (2011). Power, status, and learning in organizations. Organization Science, 22(5), 1182–1194. doi:10.1287/orsc.1100.0590 Clark, K. (2005). Serving underserved communities with instructional technologies: Giving them what they need, not what you want. Urban Education, 40(4), 430–445. doi:10.1177/0042085905276388 Cooper-Patrick, L., Gallo, J. J., Gonzales, J. J., Vu, H. T., Powe, N. R., Nelson, C., & Ford, D. E. (1999). Race, gender, and partnership in the patient-physician relationship. Journal of the American Medical Association, 282(6), 583–589. doi:10.1001/jama.282.6.583 PMID:10450723 Creswell, J. W., & Poth, C. N. (2017). Qualitative inquiry and research design: Choosing among five approaches. Thousand Oaks, CA: Sage. Davis, F. D. (1989). Perceived Usefulness, Perceived ease of use and user acceptance of information technology. Management Information Systems Quarterly, 13(3), 319–340. doi:10.2307/249008 Dhanireddy, S., Walker, J., Reisch, L., Oster, N., Delbanco, T., & Elmore, J. G. (2014). The urban underserved: Attitudes towards gaining full access to electronic medical records. Health Expectations, 17(5), 724–732. doi:10.1111/j.1369-7625.2012.00799.x PMID:22738155 Dimoka, A. (2010). What does the brain tell us about trust and distrust? Evidence from a functional neuroimaging study. Management Information Systems Quarterly, 34(2), 373–396. doi:10.2307/20721433

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Doescher, M. P., Saver, B. G., Franks, P., & Fiscella, K. 2000. Racial and ethnic disparities in perceptions of physician style and trust. Meyers Primary Care Institute Publications and Presentations, 553. Dou, K., Yu, P., Deng, N., Liu, F., Guan, Y., Li, Z., ... Duan, H. (2017). Patients’ acceptance of smartphone health technology for chronic disease management: A theoretical model and empirical test. JMIR mHealth and uHealth, 5(12), e177. doi:10.2196/mhealth.7886 PMID:29212629 Durkan, P., Durkin, M., & Gillen, J. (2003). Exploring efforts to engender on-line trust. International Journal of Entrepreneurial Behaviour & Research, 9(3), 93–110. doi:10.1108/13552550310476184 Fetterman, D. M. (2009). Ethnography: Step-by-step. Thousand Oaks, CA: Sage.

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Fiscella, K. (2005). Health vulnerability. Journal of the American Medical Association, 293(15), 1924–1925. doi:10.1001/jama.293.15.1924 Fiscella, K., & Shin, P. (2005). The inverse care law: Implications for healthcare of vulnerable populations. The Journal of Ambulatory Care Management, 28(4), 304–312. doi:10.1097/00004479-20051000000005 PMID:16172559 Galea, S., Tracy, M., Hoggatt, K. J., DiMaggio, C., & Karpati, A. (2011). Estimated deaths attributable to social factors in the United States. American Journal of Public Health, 101(8), 1456–1465. doi:10.2105/ AJPH.2010.300086 PMID:21680937 Gefen, D. (2000). E-commerce: The role of familiarity and trust. Omega. International Journal of Management Sciences, 28(6), 725–737. Gefen, D., & Carmel, E. (2008). Is the world really flat? A look at offshoring in an online programming marketplace. Management Information Systems Quarterly, 32(2), 367–384. doi:10.2307/25148844 Gefen, D., Karahanna, E., & Straub, D. W. (2003). Trust and TAM in online shopping: An integrated model. Management Information Systems Quarterly, 27(1), 51–90. doi:10.2307/30036519 Gefen, D., & Ridings, C. (2003). IT acceptance: Managing user - IT group boundaries. ACM SIGMIS Database, 34(3), 25–40. doi:10.1145/937742.937746 Gefen, D., Rose, G. M., Warkentin, M., & Pavlou, P. A. (2005). Cultural diversity and trust in IT adoption: A comparison of potential e-voters in the USA and South Africa. Journal of Global Information Management, 13(1), 54–78. doi:10.4018/jgim.2005010103 Gefen, D., Wyss, S., & Lichtenstein, Y. (2008). Business familiarity as risk mitigation in software development outsourcing contracts. Management Information Systems Quarterly, 32(3), 531–551. doi:10.2307/25148855 Gulati, R. (1995). Does Familiarity Breed Trust? The implications of repeated ties for contractual choice in alliances. Academy of Management Journal, 38(1), 85–112. Harris, M. (2001). The rise of anthropological theory: A history of theories of culture. Thousand Oaks, CA: AltaMira Press.

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Irizarry, T., Dabbs, A. D., & Curran, C. R. (2015). Patient portals and patient engagement: A state of the science review. Journal of Medical Internet Research, 17(6), e148. doi:10.2196/jmir.4255 PMID:26104044 King, T. E., Jr. & Wheeler, M. B. (2007). Medical management of vulnerable and underserved patients: principles, practice, and populations: New York, NY: McGraw-Hill Medical Publishing Division. Mackert, M., Mabry-Flynn, A., Champlin, S., Donovan, E. E., & Pounders, K. (2016). Health literacy and health information technology adoption: The potential for a new digital divide. Journal of Medical Internet Research, 18(10), e264. doi:10.2196/jmir.6349 PMID:27702738 Mayer, R. C., Davis, J. H., & Schoorman, F. D. (1995). An integrative model of organizational trust. Academy of Management Review, 20(3), 709–734. doi:10.5465/amr.1995.9508080335

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McKnight, D. H., Cummings, L. L., & Chervany, N. L. (1998). Initial trust formation in new organizational relationships. Academy of Management Review, 23(3), 473–490. doi:10.5465/amr.1998.926622 Medford-Davis, L. N., Eswaran, V., Shah, R. M., & Dark, C. (2015). The Patient Protection and Affordable Care Act’s effect on emergency medicine: A synthesis of the data. Annals of Emergency Medicine, 66(5), 496–506. doi:10.1016/j.annemergmed.2015.04.007 PMID:25976250 Nambisan, P. (2017). Factors that impact Patient Web Portal Readiness (PWPR) among the underserved. International Journal of Medical Informatics, 102, 62–70. doi:10.1016/j.ijmedinf.2017.03.004 PMID:28495349 Nutbeam, D. (2000). Health literacy as a public health goal: A challenge for contemporary health education and communication strategies into the 21st century. Health Promotion International, 15(3), 259–267. doi:10.1093/heapro/15.3.259 OneView. (2019). The eight principles of patient-centered care. Retrieved from https://www.oneviewhealthcare.com/the-eight-principles-of-patient-centered-care/ Pavlou, P. A., & Gefen, D. (2005). Psychological contract violation in online marketplaces: Antecedents, consequences, and moderating role. Information Systems Research, 16(4), 372–399. doi:10.1287/ isre.1050.0065 Riegelsberger, J., Sasse, M. A., & McCarthy, J. D. (2005). The mechanics of trust: A framework for research and design. International Journal of Human-Computer Studies, 62(3), 381–422. doi:10.1016/j. ijhcs.2005.01.001 Shaw, E. K., Howard, J., Clark, E. C., Etz, R. S., Arya, R., & Tallia, A. F. (2013). Decision-making processes of patients who use the emergency department for primary care needs. Journal of Health Care for the Poor and Underserved, 24(3), 1288–1305. doi:10.1353/hpu.2013.0140 PMID:23974399 Street, R. L., O’Malley, K. J., Cooper, L. A., & Haidet, P. (2008). Understanding concordance in patientphysician relationships: Personal and ethnic dimensions of shared identity. Annals of Family Medicine, 6(3), 198–205. doi:10.1370/afm.821 PMID:18474881

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Studer, Q., Robinson, B. C., & Cook, K. (2010). The HCAHPS handbook: Hardwire your hospital for pay-for-performance success. Dover, AR: Fire Starter Pub. Wallace, L. S., Angier, H., Huguet, N., Gaudino, J. A., Krist, A., Dearing, M., ... DeVoe, J. E. (2016). Patterns of electronic portal use among vulnerable patients in a nationwide practice-based research network: From the OCHIN Practice-based Research Network (PBRN). Journal of the American Board of Family Medicine: JABFM, 29(5), 592–603. doi:10.3122/jabfm.2016.05.160046 PMID:27613792 Wallace, L. S., Angier, H., Huguet, N., Gaudino, J. A., Krist, A., Dearing, M., . . . DeVoe, J. E. (2017). Patterns of electronic portal use among vulnerable patients in a nationwide practice-based research network: From the OCHIN Practice-based Research Network (PBRN). HHS Author Manuscripts. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5341130/

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Warkentin, M., Sharma, S., Gefen, D., Rose, G. M., & Pavlou, P. A. (2018). Social identity and trust in internet-based voting adoption. Government Information Quarterly, 35(2), 195–209. doi:10.1016/j. giq.2018.03.007 WHO. (2008). Commission on Social Determinants of Health - Final Report. Retrieved from https:// www.who.int/social_determinants/thecommission/finalreport/en/ Zarcadoolas, C., Vaughon, W. L., Czaja, S. J., Levy, J., & Rockoff, M. L. (2013). Consumers’ perceptons of patient accessible electronic medical records. Journal of Medical Internet Research, 15(8), e168. doi:10.2196/jmir.2507 PMID:23978618 Zucker, L. G. (1986). Production of trust: Institutional sources of economic structure, 1840-1920. In B. M. Staw, & L. L. Cummings (Eds.), Research in Organizational Behavior (Vol. 8, pp. 53–111). Greenwich, CT: JAI Press.

ADDITIONAL READING Gefen, D., & Pavlou, P. A. (2012). The boundaries of trust and risk: The quadratic moderating role of institutional structures. Information Systems Research, 23(3), 940–959. doi:10.1287/isre.1110.0395 Gefen, D., & Reychav, I. (2014). Why trustworthiness in an IT vendor is important even after the vendor left: IT is accepting the message and not just the messenger that is important. Omega, 44(C), 111–125. doi:10.1016/j.omega.2013.11.002 Pavlou, P. A., & Gefen, D. (2005). Psychological contract violation in online marketplaces: Antecedents, consequences, and moderating role. Information Systems Research, 16(4), 372–399. doi:10.1287/ isre.1050.0065

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KEY TERMS AND DEFINITIONS Code of the Street: Behaviors considered acceptable in urban communities that demonstrate respect for individuals. E-Health: Healthcare practices supported by electronic processes. Ethnography: Methodology based on cultural anthropology that counts on the social understanding of the experience gained by the researcher in studying a culture group rather than interviews or surveys of others. Health Information Technologies (HIT): Technology applied to health and healthcare supporting health information management across computerized systems and the secure exchange of health information between healthcare stakeholders, e.g. consumers, providers, payers. Health Literacy: How people obtain, understand, use, and communicate about health information to make informed decisions ad follow instructions for treatment. Patient Portal: A secure online website that provides convenient access to personal health information. Portals allow patients to securely perform a multitude of tasks that includes scheduling appointments,

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retrieving laboratory results, managing medications, accessing medical history data and other patient education or health information, and communicating with their healthcare provider. Portal Readiness: Focus on activities that prepare patients towards using patient portals and identified individual level constructs focused on perceived need involved for which technology will be used. Race Concordant: Race/ethnicity of the patient and provider is the same. Safety-Net Hospital: A hospital that has a legal obligation to provide healthcare for individuals regardless of their insurance or ability to pay. Social Determinants of Health (SDOH): Economic and social conditions resulting from circumstances in which people are born, grow up, live, work, and age that influence individual and group differences in the quality and provision of medical services. Social Emergency Medicine: Addressing the social determinants of health from the Emergency Department by considering the social determinants underlying health illness and developing systemic interventions, measuring their effects, establishing collaborative community partnerships, and advocating for policies to improve the health of patients. Social Identity Theory: Theory formulated by the late Henri Tajfel that predicts certain intergroup relations and group processes where group behaviors develop from a shared sense of social category membership. Social Vulnerability (Healthcare): Social circumstances affecting vulnerable patients whereby multiple chronic medical, behavioral, and social problems interact in complex ways to undermine health that amplify the barriers to care. Subjective Norms: One of the predictors of behavioral intentions in the Theory of Planned Behavior that refers to perceived social pressure to perform or not to perform the behavior.

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This research was previously published in Impacts of Information Technology on Patient Care and Empowerment; pages 219251, copyright year 2020 by Medical Information Science Reference (an imprint of IGI Global).

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Chapter 30

My Digital Healthcare Record: Innovation, Challenge, and Patient Empowerment Anita Medhekar https://orcid.org/0000-0002-6791-4056 Central Queensland University, Australia Julie Nguyen https://orcid.org/0000-0003-1018-0079 Central Queensland University, Australia

ABSTRACT In the 21st century, the digital revolution is disrupting every sector of the economy. Australia has adopted the digital healthcare technological revolution such as My Health Record (MyHRC) to improve healthcare practice for clinicians/medical professionals and empower consumers to provide positive health management experience with a patient-centred approach to digital health revolution and digital literacy. My Health Record has its benefits, but it has been a challenge for the healthcare practitioners, hospital staff, as well as patients as consumers to accept, embrace, and uptake digital technologies and manage their healthcare records amidst concerns of slow adoption by the patient, data privacy, and implications of the secondary use of their personal data by non-government entities.

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INTRODUCTION In the 21st century, developed countries, have adopted digital health technological revolution to improve healthcare practices for clinicians/medical professionals, and provide positive experience to the consumers and the community at large. It has been a challenge for the healthcare practitioners, hospital administrative staff as well as patients to accept, embrace and uptake digital technologies and manage their healthcare records amidst concerns of slow adoption by the patient/consumers because of personal data privacy and security issues (Walsh et al., 2018). The main aim of embracing digital or e-Health technologies DOI: 10.4018/978-1-6684-2414-8.ch030

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Research Anthology on Improving Health Literacy Through Patient Communication and Mass Media, edited by Association, Information Resources Management, IGI Global, 2021. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/nyulibrary-ebooks/detail.action?docID=6686709. Created from nyulibrary-ebooks on 2021-09-02 06:30:41.

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 My Digital Healthcare Record

in healthcare, is to transform and provide world class healthcare system and hospital facilities and empower the patients to participate online, access their health information, communicate and control their personal health records and choose the right healthcare provider and treatment to improve their health and well-being (Archer et al., 2011; Baldwin, Singh, Sittig & Giardina, 2017; Kim & Johnston, 2002; Queensland Health, 2017; Sittig, 2002; Wood et al., 2013). Medical technological innovation includes a wide range of products and services to treat medical conditions and diseases, for example, innovative healthcare services, medical devices such as e-Health, digital health record tools, healthcare transportation, 3D printing of medical products, tele-medicine, information technology, tele-health, mobile health technologies, artificial intelligence, health informatics and ‘My Health Record’ [‘MyHRC’] (Guo, Chen & Mehta, 2017). Digital revolution is disrupting every sector of the economy including healthcare in Australia. Digital revolution is driven by innovators of healthcare technologies, investors/entrepreneurs, medical professionals, healthcare providers and government policy makers to bring about a change in healthcare ecosystems. Any innovation, such as technological e-Health innovation needs to be diffused to be widely adopted and used effectively for its perceived advantage derived from its use and application (Lee, Hsieh & Hsu 2011; Roger, 2003). Usually government policies and regulation drive or squash any type of innovation. It is essential that digital e-Health innovation is healthcare provider-friendly as well as patient-friendly (Hemsley, et al., 2016; Hemsley et al., 2017). A human and a patient-centred approach to digital health revolution, such as ‘‘MyHRC’’ will help to change the patient experience and empower them to embrace digital technologies and engage with digital technologies to access and manage their own health records with positive healthcare experience (Australian Government, 2016a & 2016b). Greenhalgh et al. (2010) describe it as a shift from ‘specialists-driven’ to ‘patient-driven’ self-managed care as we move from ‘information-age’ to’ industrial-age’, which empowers the patients/consumers. There are many benefits of adopting e-health to the clinicians as well as to patients, who are empowered to engage with their ‘MyHRC’ to manage their health effectively. However, there are also many challenges in terms of English language literacy, internet literacy, health literacy, and key stakeholders’ such as government and healthcare providers responsibility in ensuring privacy and safety of patient’s data online (Russo, Sittig, Murphy & Singh, 2016; Sittig, Belmont & Singh, 2018; von Wagner, Steptoe, Wolf & Wardle, 2009). Literature review indicates publications on digital healthcare innovation, such as ‘MyHRC’ and mobile health adoption and patient empowerment is relatively an emerging new area of research. This exploratory research examines the benefits and challenges of adopting digital MyHRC in Australia. The objective of this chapter is as follows. The first introductory section of the chapter introduces the growing importance and significance of digital health innovation and adoption in developed countries. Section two, provides the literature review on digital health innovation and patient literacy regarding digital health. Section three, discusses the case study example of Australia in adopting digital health strategies such as ‘MyHRC’. Section four, lists the benefits and challenges from healthcare providers and patients/consumer perspective in adopting digital health platforms. Section five, presents discussions and recommendations for healthcare policy implications and proposes a model for diffusion of innovation of ‘MyHRC’, which can be tested in the future. Section six, provides conclusion and future research directions to advance the knowledge in the field of digital healthcare innovation and patient empowerment.

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 My Digital Healthcare Record

LITERATURE REVIEW

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Digital Health Innovation: Electronic Health Records Queensland Health has identified four key roles for digital health system: (i) Promoting wellbeing by thorough healthy behaviour to improving health of people in Queensland. (ii) Delivering healthcare by emphasising access, equity and quality in healthcare delivery for all. (iii) Connecting healthcare by tackling funding, policy and delivery barriers, in order to make the health system work better for consumers and communities. (iv) Pursuing innovation by developing evidence-based models that work, promoting research and translating it into better healthcare practice (Queensland Health, 2017). This chapter considers online ‘MyHRC’ as a subset of digital health technological application. Rogers (2003) model of diffusion of innovation theory has been used by researchers to predict technology usage or adoption of internet technology. Diffusion of Innovation Theory identifies four characteristics of innovation: (i) advantage, (ii) compatibility, (iii) complexity, and (iv) observability (Rogers, 2003). These diffusion of innovation characteristics can be applied to e-Health such as the use of ‘MyHRC’ and Mobile Health applications, discussed in section five. A scoping literature review by Archer et al. (2011) consisting of qualitative and quantitative journal articles about patient-centred personal health records system was looking at its architecture/design, functionality, cost/financing issues, implementation, application, privacy/security, benefits, barriers to acceptance, adoption, and use, satisfaction, health self-management, health education and lifestyle, and clinical outcomes in Canada and the USA. They conclude that patients, primary care provider/ general partitioner has access to patient’s electronic medical records. According to their scoping review findings electronic health records functionality is more ‘physician-oriented’ rather than ‘patient-oriented’, as physicians use these records for “advising and supporting patients in education and health self-management” (Archer et al., 2011, p.515). On the other hand, ‘MyHRC’ share most confidential personal information with patients, physician/ clinicians, administrative staff, and health insurance providers, which also engages patients in managing their healthcare issues and records related to sickness, diagnostic results, x-rays, and prescribed medications. Protecting the security, privacy and confidentiality of the online electronic health/clinical records is critical, as the data can be infected with viruses and lost, hacked, stolen and misused without patients consent for example by the health insurance, agencies, employers and hospital administrators. Andrews, Gajanayake and Sahama (2014) quantitative survey in Queensland, 750 Australian people up to the age of 65, who had not used ‘MyHRC’ because of lack of trust, perceived risks involved in using and sharing the online health record system, and privacy and confidentiality breach related to their personal health records. Further, a study conducted in Denmark and New Zealand found that respondents were very concerned about the security risk and privacy of the integrated private e-Health records/data stored online (Chhanabhai & Holt, 2007; Zurita & Nøhr, 2004). Trust in e-Health technology and usage are also researched by Atienza et al. (2015) and Georgiou and Prgomet, (2018). The key themes identified from the selected 14 papers was about trust related to privacy and confidentiality, quality of e-Health and effectiveness and its sustainability (Georgiou & Prgomet, 2018). Atienza et al. (2015) mixed-methods study about the U.S consumers attitudes and perceptions about privacy and security of health summary records with 24 focus group interviews with 256 participants from diverse geographical locations and demographic characteristics. Consumers as patients are not only concerned about privacy of their health information as to who is accessing, seeing, and using their 540

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 My Digital Healthcare Record

personal health records, and security regarding unauthorised access, use and sharing their records; but also with the knowledge and user-friendly applications of online technologies such as tablet note books and smart-phone mobile health devices on which health information can be accessed (Lin & Bautista, 2017). Furthermore, Atienza et al. (2015) findings generated three themes concluding that, (i) consumers consider the trade-offs of privacy and security of health information exchanged that is costs of privacy and security versus the potential benefits of using mobile-Health devises for accessing their health information. (ii) Control over health information used, shared and exchanged, and (iii) Trust in mobile technology use of health applications to share information and trust in the healthcare provider/general practitioner influencing people behaviour to use mobile devices for sharing health information. Further, Greenlalgh et al. (2010) mixed methods study in England found that patients perceived HealthSpace neither useful or easy to use to self-manage their health records. Policy makers according to their study hoped that adopting HealthSpace will empower patients, lower National Health Service costs, provide better quality of data, personalise healthcare, and improve patient health literacy. Zulman et al. (2011) survey regarding use of personal health record system by veteran affairs found that 79% of respondents were interested in sharing their personal health information with someone outside of their health system and 25% with non-veteran healthcare provider. Australian study found that, protection of private data, ease of use of e-Health records, lack of interest and lack of integration of health records with the existing health systems, privacy and security of personal information of the patent is critical for the health consumer and healthcare professionals (Andrews et al., 2014; Lehnbom, McLachlan & Brien, 2012). Therefore, Haas, Wohlgemuth, Echizen, Sonehara and Müller (2011) consider confidentiality, availability and integrity as the three essential goals for ensuring that personal online health records of the patients are confidentially secured, and available and accessed by those who have the authority to use it with integrity and accountability in order to maintain patient’s safety and privacy for effective and efficient delivery of healthcare to the patient over their lifetime. A comparative study also found that security and privacy requirements are essential for developing online integrated health records of the patient’s data (Farzandipour, Sadoughi, Ahmadi & Karimi, 2010). Various other international studies identified lack of awareness of benefits lack of interest, concerns about data privacy, safety and security, internet and communication technology related issues, inadequate skills of the user, to understand and use the information, technology and health the benefits derived from information access, sharing and use of ‘MyHRC’ (Ludwick & Doucette, 2009; Nambisan, Kreps & Polit, 2013; Stevenson & Nilsson, 2012; Yoo et al., 2013). A systematic literature review of 49 articles by Fernández-Alemán, Carrión Señor, Lozoya and Toval (2013) found that, security and privacy of patient’s electronic health records and regulation around security and privacy policy is a concern given that countries are moving away from paper-based to online integrated electronic health records. The study of literature identified five main characteristics related to patient’s electronic health records safety and security: (i) compliance related to ensuring privacy, safety standards and regulation of electronic health records, (ii) information systems acquisition, development and maintenance of encrypted user’s data on the server for confidentiality reasons, (iii) access and control to authenticate origin of data source and user of the data by user name and password identity, (iv) communications and operations management of the type of information exchanged through audit trials, and (v) human resources education and training of medical and non-medical professional staff is essential to ensure information security and privacy issues of e-Health records of the patient’s sensitive data. Farzandipour et al. (2010) comparative study on e-Health records security in Australia, Canada and the USA conclude that, not just medical professionals and patients but all computer users should be 541

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 My Digital Healthcare Record

aware of their online information security through relevant training. Therefore, continuous education and training of the human resources during service is essential for reducing the potential risk to patient safety, data security and privacy in a healthcare service delivery environment. Further, Fernando and Dawson (2009) Australian study with 26 clinicians in three large hospitals found that hospital clinicians were not trained to use and understand the information regarding privacy and security implementation effectively and identify confidential and sensitive private information of the patients, resulting in suboptimal patient safety and healthcare outcomes. Furthermore, the Health Information Management Association of Australia Limited (HIMAA) is registered with Australian Skills Quality Authority (ASQA) to ensure training of health information professional employees of certificate IV in clinical classification and a clinical coding unit for understanding and implementing anonymity, privacy and security coding rules for patient private health records and data usage (HIMAA, 2019). Another Australian study by Hanna et al. (2017) where they interviewed 12 patients over the phone to explore their own experience of using personally controlled electronic health records identified two key advantages of using ‘MyHRC’s. (i) Improved quality of healthcare delivery due to information sharing, and (ii) enhanced capacity of the patient for self -management of their health issues. Further, Kerai, Wood and Martin (2014) study, where they interviewed 80 senior citizens in Australia to get their perspective on electronic health record usage found that 84% of the participants were not ready to take on the responsibility of using the system due to lack of knowledge of online usage and preferred their general practitioner’s medical practice to manage their health records. For the online health record system to be fully beneficial, effective to provide patient-centred care, it should be widely accepted, simple, easy to use and accessible to both the patients and the healthcare providers to share and communicate health information in a timely manner to empower the patients. A qualitative pilot study of patient experience in using ‘My HealtheVet’ in the USA found that, their health records positively influenced to improve communication with the healthcare provider, enhanced the knowledge of their health and improved self-care, increased greater participation, as when to seek care for follow-up action and also it was a challenge to have so much health information, which empowered them to improve their quality of care. There is thus an association between internet and health literacy and health empowerment that is patient’s use of e-Health record portals (Coughlin et al., 2018). Therefore, it is essential that patients also have English language literacy, as well as knowledgeable in the use of internet and health literacy to adopt, engage and manage their online health records to improve self-management of healthcare and have a choice what to keep or delete from online summaries of health reports (Baldwin et al., 2017; Bratan, Stramer & Greenhalgh, 2010; Hemsley et al., 2016; Hemsley, Rollo, Georgiou, Balandin & Hill, 2018; von Wagner, 2009).

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Patient Digital Health Literacy World Health Organization (2019) has defined health literacy as “the cognitive and social skills which determine the motivation and ability of individuals to gain access to, understand, and use information in ways which promote and maintain good health. Health literacy means more than being able to read health information pamphlets and successfully take doctors’ appointments. By improving people’s access to health information and their capacity to use it effectively, health literacy is critical to empowerment” (WHO, 2019). Nations with multicultural migrant population in Australia, Canada, New Zealand, United Kingdom and USA, digital e-Health health literacy is essential. Health literacy is defined as an indi-

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 My Digital Healthcare Record

vidual’s ability and skills to read, understand and use medical and healthcare information from western socio-cultural context (Williams & Cooper 2006). There is an association between general health literacy, digital-literacy, empowerment and to learn about online health information with the use of digital health technologies, in order to make decisions to achieve positive healthcare outcomes. Usually, in developed or developing countries, low income and education levels of the people, is associated with people with low socio-economic, Aboriginals and Torres Strait Islanders, or culturally and linguistic diverse background with low levels of health literacy (Birru et al., 2004; Paasche-Orlow, Parker, Gazmararian, Nielsen-Bohlman & Rudd, 2005; Mitchell & Begoray, 2010; Walsh et al., 2018; von Wagner et al., 2009). Therefore, developing adequate levels of health literacy depends on numerous internal and external factors such as family environment, education, self-learning, cognitive ability, and prior knowledge (von Wagner et al., 2009). Walsh et al. (2018) Australian study applied content analysis method to analyse online ‘MyHRC’s information quality on government and non-government organisations website to identify key themes. Further, they examined the use of e-Health resources, knowledge, registration and barriers to use faced by the consumers. Their research findings identified key themes to determine health information quality which were from Government Department of Health and created for the Australian public when developing these health record information sites. Other information resources related to ‘MyHRC’ registration, privacy issues and benefits of use were mentioned in the resources, which was meant for the people with high literacy rate and excluded population with low health literacy, to engage online with healthcare professionals and health service providers to manage their summary of health records (Walsh et al., 2018). Therefore, people with low literacy levels regarding the use of internet computers and e-Health records hesitate to use and click only a couple of times on electronic health information (Birru et al., 2004). Access to and use of internet based digital technologies, along with health information quality is the most important step in health literacy and understanding how to engage online and manage ‘MyHRC’ (Walsh et al., 2019). In case of Australia, an online content analysis study by Walsh et al. (2019) found that since 2016, there was some improvement on assessing health information quality and usability of ‘MyHRC’. Their study also found that there was an increase in ‘My-HRC’ related information resources specially from non-government organisations for users from non-English speaking backgrounds, video resources, and information regarding security of data, patient/user privacy and post-registration use of information by patients and the doctors. However, usability of health information resources, information quality and ‘MyHRC’ system still needed to be improved and enhanced, because people with low digital/ computer usage literacy and health literacy found it difficult to access and use ‘MyHRC’s and will be hesitant to register and use ‘MyHRC’ or e-Health platforms due to low literacy levels. Clark et al. (1998) and Clark, Starr-Schneidkraut and Windsor (1994) proposed a framework for selfmanagement of diseases by the patient, by determining what is the effective way of controlling the disease to achieve one’s personal goal of improving health and wellbeing. Clark et al. (1988) self-regulation model was based on three assumptions: (i) Several internal and external factors predispose a person to manage a disease. (ii) Disease management by patients is the conscious use of various strategies. (iii) The patients’ perception of outcome/s is related to their health and wellbeing. Further, according to Clark, Gong and Kaciroti (2001), disease management by a person depends on the internal factors like the knowledge about their own health problems and word-of-mouth information from friends and relatives regarding the disease and external factors like financial means, literacy levels and recommendations by the doctor/clinicians. Clark et al. (2001) emphasise that self-regulation model for disease management is a continuous and a reciprocal process. Furthermore, access and literacy 543

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regarding use of mobile wireless health technologies such as smart-phones, mobile-Health, internet, telemedicine and tablets are widely used for self-management of health, health information literacy, health communication, in developed and developing countries rural remote areas for “providing low costs and effective communication” (Gleason, 2015, p.114) of information sharing between the patient’s general practitioner and local healthcare worker. In case of ‘MyHRC’ use ethical, regulatory and equal access questions are raised. The patient is empowered to make choices and decide what personal records should be in ‘MyHRC’ online to be accessed by the doctor or hospital’s administrative staff (Australian Government, 2016a). Various studies about Australia mention about ethical, legal, regulatory and equal access rights issues related to adopting and use of ‘MyHRC’ by people in general, and mainly those with intellectual and communication disability to be able to make a choice to use e-Health record system and empower themselves (Fry, Spriggs, Arnold & Pearce, 2014; Hemsley et al., 2017; Spriggs, Arnold, Pearce & Fry, 2012; van Dooren, Lennox & Stewart, 2015).

RESEARCH METHODOLOGY The research methodology undertaken was qualitative exploratory approach, examining the origin and implementation of the MyHRC by the Australian Government. The source of qualitative data collection was the government MyHRC websites and the related literature. The social science exploratory research, which is considered primary method for theory advancement was used along with case study-based research as the preferred method of choice by researchers for developing and proposing new theoretical models (Creswell, 2014; Yin, 2017). Authors explored and examined various Australian government documents, related to digital ‘MyHRC’ regulatory acts, ‘MyHRC’ privacy and confidentiality acts, available online, regulatory requirements and current relevant literature and proposed a conceptual model for digital MyHRC: Innovation, Adoption, Literacy and Empowerment, which can be tested in the future.

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DIGITAL HEALTH INNOVATION: CASE OF AUSTRALIA – MY HEALTH RECORD In the Australian context, the relatively new electronic health record is called ‘My Health Record’. Online ‘MyHRC’ is a digital collection of patient’s meetings with the doctor, results of x-ray, allergies, diagnostic reports, such as blood tests, prescription medicine records at one central place, which can be accessed by the medical practitioner and the patients with access to internet, rather than with every doctor that the patient visits. Therefore, it provides a secure online summary of an individual’s health information from various clinical settings entered by healthcare providers (e.g. specialists, doctors, and allied health professionals) and the individual. This may include information regarding the individual’s medical appointment dates and times, health professional’s details, past medical conditions, allergies, pathology and radiology results (e.g. blood tests and x-rays), medication prescription and treatment plan (Australian Digital Health Agency {ADHA}, 2019). The Australian Government initially launched nationwide the personally controlled electronic health record (PCEHR), an opt-in model provided by National E-Health Transition Authority in July 2012 and nearly 2.6 million (11%) had registered, and since March 2016, it was relaunched as ‘MyHRC’ an optout model operated by Digital Health Agency (Department of Health, 2016). For administration related 544

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 My Digital Healthcare Record

to use, privacy and regulation, MyHRC is underpinned by, various regulatory acts introduced by the Australian Commonwealth Government (i) Healthcare Identifier Act 2010, (ii) My Health Record Act 2012’, (iii) My Health Record Regulations 2012, and (iv) My Health Record Rule 2016, and Privacy Act 1988 to provide access, identify the user, privacy and confidentiality of patient records and the rules governing the electronic health records (Australian Government, 2016a; Commonwealth of Australia, 2012 & 2015). My Health Record allows for healthcare providers to share patient health information to improve effectiveness of healthcare and reduce healthcare costs. It may also aid in improving health outcomes and patient satisfaction by engaging individuals in decision-making, encouraging active patient participation in their health management plan, enabling effective communication between individuals and their healthcare provider, and enabling a strong patient-clinician relationship (Otte-Trojel, de Bont, Rundall & van de Klundert, 2014). Torrens and Walker (2017) study found that females were more likely to register and use ‘MyHRC’ online than males. Moreover, middle-aged males, older females and adolescents of both sexes had lowest registration on My Health Record. The Australian Government (2019c) reports a 90.1% national participation rate for My Health Record as at 28th of July 2019. This is the rate of people who chose not to opt-out as a percentage of those who meet the eligibility criteria for Medicare (Australian Government, 2019c). State wise participation rate is Australian Capital Territory (86.7%), New South Wales (90.2%), Northern Territory (93.6%), Queensland (91.2%), SA (89.3%), Tasmania (90.3), Victoria (89.3), and Western Australia (90.4%). Further, an approximate of 16,400 healthcare provider organisations have registered with My Health Record (Australian Government, 2019c). The number and types of healthcare providers organisation registered are as follows: General Practice Organisations (7,240), Public Hospitals and Health Services (832), Private Hospitals and Clinics (190), Pharmacies (4770), Aged Care Residential Services (239), Pathology and Diagnostic Imaging Services (119) and, Other categories of healthcare providers Including Allied Health (2960). The Health Portfolio Budget Statements 2018-19 released by the Australian Government confirms the continuing investment of $200 million to continue the operation of the ‘MyHRC’ system (Australian Government, 2019a). This is in additional to the existing national investment of more than $1 billion (Tomlinson, 2019). This will further improve health outcomes by enhancing patient self-management and continuity of care across all healthcare services in Australia. (Australian Government, 2019a). Concerns around reliability, privacy and security of ‘MyHRC’ has also been raised in Australia by the public. Further, there are increasing concerns around secondary use of personal information by the Australian Government, such as for the use of information to assess social welfare eligibility and research for the public good. Furthermore, the fear of My Health Record database breach by cyber attackers were rapidly heightened by untimely reports in July 2018, by various international media organisations that 1.5 million Singaporean citizens’ health records had been breached (BBC, 2018). It was reported that the Singapore Prime Minister Lee Hsien Loong’s personal information was targeted after a similar incident in the previous year targeting the military service (BBC, 2018). The Australian Government’s implementation of ‘MyHRC’ has generated widespread controversy and debate in Australia. This mainly stemmed from the transition between the original opt-in model of the Personally Controlled Electronic Health Record to the opt-out model of the My Health Record. Australians who wished to not have a ‘MyHRC’ were informed to opt-out via the ‘MyHRC’ website and/ or the help line by the 15th of October 2018. This opt-out period was soon extended to 31st of January 2019 following increasing reports of problems with opting out of My Health Record (ADHA, 2018a). 545

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 My Digital Healthcare Record

All Australians who did not to elect to opt-out will have a ‘MyHRC’ created for them automatically. However, individuals who may eventually decide to have a My Health Record do have the option to register at any time to create a record (ADHA, 2018). Australian Commission on Safety and Quality in Healthcare {ACSQHC}, commissioned report by Shaw, Hines, and Kielly-Carroll (2017) findings identified five key areas of digital health interventions: (i) electronic patient portals, (ii) Electronic patient reminders on mobile phone technologies, (iii) information-sharing by electronic discharge summaries, (iv) computerises provider order entry and electronic prescription, and (v) clinical decision support systems. Shaw et al., (2017) concluded following extensive research, a synthesis of systematic reviews; and interviews with informants from Australia, the US and the UK that: Introducing digital health initiatives into healthcare organisations can produce significant benefits to patients and healthcare providers. Improvements to quality, safety and efficiency of patient care are achievable via digital interventions. The literature indicates that a combination of digital interventions may yield greater benefit (Shaw et al., 2018, p.6). The Chief Executive of e-Health Queensland, rightly comments, “Digital healthcare is one of the most important revolutions in healthcare. Our digital hospitals and other digital healthcare capabilities not only relieve some of the pressures of public hospital infrastructure but are also providing highly connected and interactive models of care that support personalised, precise and well-informed treatment of patients across care settings and care teams. This means improved safety, quality of care and faster treatment for patients” (Queensland Health, 2017). Health information on ‘MyHRC’, is viewed online with an access to internet on any device, anytime, anywhere in the world. It helps to keep check on our health over our life time. Healthcare providers and doctors can access patient’s important healthcare information if they cannot talk under anaesthetic, to know about patient’s prescription medicine, allergies, family history of diseases, pathology and radiology tests results and medical condition of diagnostic results (ADHA, 2019). Australian Commission {ACSQHC} report mentions various benefits generated from digital initiative in health for healthcare providers and patients, such as improved outcomes, improved patient centeredness, improved appropriateness of healthcare, reduction in preventable harm to the patient, and reduction in unwarranted variation (Shaw et al., 2017). The following section lists the benefits and challenges from digital health innovation.

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BENEFITS AND CHALLENGES OF DIGITAL HEALTH INNOVATION Benefits: Adoption and Use of Digital ‘MyHRC’ Introduction of online ‘MyHRC’ has numerous benefits to healthcare providers and patients/consumers to make the healthcare management and delivery integrated, efficient and effective. •

Adopting ‘MyHRC’ system which is a subset of e-Health, can provide improved capabilities to the providers and the patient for data reporting, recording data using software offline, analysis and feedback for improving healthcare delivery and optimal patient outcome.

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 My Digital Healthcare Record

• • • •

Availability of patient information in an integrated manner to the healthcare providers for effective delivery of quality treatment. Increased patient empowerment and participation, provides foundation for patient-centred healthcare management, giving a sense of ownership and satisfaction of the patient by empowering them to manage and use online ‘MyHRC’ to improve their health and wellbeing. Increased empowerment and satisfaction of the key stakeholders/ medical professionals to manage and use online e-Health records in an integrated manner for the benefit of the patient. Economic benefit in the use of scarce resources and cost-effectiveness in using e-Health records and ‘MyHRC’ from the demand side and the supply side, including eliminating paper and logistic of storing and transport costs of posting medical reports to the healthcare stakeholders.

Challenges: Adoption and Use of Digital ‘MyHRC’ Introduction of online e-Health or ‘MyHRC’ by the national healthcare system of countries faces numerous challenges by healthcare providers and patients as listed below. • • • • • • • • • • •

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• • • •

Access to affordable and sustainable internet connections. Access and affordability of internet communication and electronic devices such as laptop, tablets, smart-phone, and e-Health mobile apps by consumers. Availability of financial resources and funding to establish e-Health system and ‘MyHRC’. Support from the government and hospital / healthcare senior management. Affordability and access to electricity, internet connectivity and personal computers by the people/patients to use ‘MyHRC’. Patient safety related to poor documentation about medication and clinical errors, feedback and treatment. Patient health summary data privacy, safety and security. Patient health literacy, English language, computer and Internet literacy. Education and training regarding patient data privacy, safety and security. Professionals, doctors and clinician’s (medical and non-medical staff) education and training regarding ethical and medical issues about understanding, use and application of online health information, engagement and communication with the consumers/patient. Quality of healthcare data and avoiding human errors in data entry and other technological challenges. Linguistic or English language challenges faced by non-English speaking migrants in Australia, to participate on mobile health devises and register for using ‘MyHRC’. Besides people with low literacy rates, poverty, with mental and physical disabilities, retirees with health problems and those who cannot afford internet and computers, are not able to use ‘MyHRC’ and thus may be disadvantaged due to being excluded from the system. Low confidence and lack of motivation and knowledge to use information technology for access and use of e-Health record or ‘MyHRC’ by the healthcare providers and the patients, will reduce the percentage of adoption and uptake by the healthcare practitioners and consumers. Shortage of human resources trained capabilities in information technology and health informatics to assist the healthcare practitioners and consumers in adopting the technology.

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 My Digital Healthcare Record

SOLUTIONS AND RECOMMENDATIONS MyHRC are managed by the patients to restrict access to some or all documents stored. However, in an emergency the doctor can override the safeguard to access information in order to provide the best care. It is particularly important that women, Aboriginal First Nation people and non-English speaking background migrants from culturally and linguistically diverse (CALD) communities in Australia adopt digital health technology such as ‘MyHRC’ and empower to self-manage their health. This also requires everyone to have access to smart phones, laptop and internet connections. On the other hand, it is essential for the doctors and clinicians to also embrace, access and manage the privacy of their patient ‘s health records to enhance their clinical practice and provide positive healthcare outcome to the patients. The challenge is to strike a balance between the quality of healthcare delivery and managing the online digital healthcare records by the clinicians is very important in partnership with the patient. Patient literacy or education that incorporates self-management of digital records, empowers the patient in achieving the goal of improving health in a cost-effective manner. Following steps can be taken to promote digital literacy as well as e-Health literacy so that people can use ‘MyHRC’ to empower them for their own health benefit. • • •

•

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•

•

Promoting digital health literacy by the healthcare providers is essential, as it facilitates and motivates patients to self-manage and empower themselves and have control over factors that determine their own health with a positive healthcare outcome. Improved partnerships and collaboration between healthcare service providers and the patients as consumers to enhance their self-management capabilities, can result in better use and selfmanagement of digital ‘MyHRC’ to improve health and wellbeing. Further, non-government community and multicultural organisations can be funded to provide information sessions and workshops to non-English speaking migrants which are coming from CALD backgrounds including Aboriginal and Torres Strait Islander people with low literacy rates to train them how to register, use and engage with ‘MyHRC’, to make informed decisions about their ehealth and empower them for their own benefit. It is essential for people to not just to have access, know how to use their digital MyHRC, but foremost how to use the computer technology. Technical and Advancing Further Education (TAFE) can be funded to run one semester digital/computer literacy units to teach how to use the computer and internet search engine skills to people with low-literacy and non-English speaking background migrates from CALD backgrounds. All key stakeholders such as government at the commonwealth and state levels, department of health, hospitals (public and private), allied healthcare service providers and patients as consumers must work together for the adoption, safety, security, privacy of shared health summaries, for beneficial usage of electronic healthcare system to empower the patient to manage their health and wellbeing in cooperation with the general practitioner. Roger’s (2003) four characteristics of innovation diffusion theory such as relative advantage, compatibility, complexity, and observability is adapted to the MyHRC Innovation, Adoption, Literacy and Empowerment Model proposed by this paper.

The perceived four characteristics of innovation diffusion and adoption theory as identified by Roger (2003) can be applied to ‘MyHRC’ as shown in the proposed developed Figure -1- ‘My Digital Health548

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 My Digital Healthcare Record

care Record: Innovation, Adoption, Literacy and Empowerment Model’. can be empirically tested in the future. This paper contributes a 5th characteristics of Universal Adoptability to e-Health innovation of ‘MyHRC’. The five perceived characteristics as independent variables of My Digital Healthcare Record‘MyHRC’ as an e-Health Innovation which can improve healthcare communication and sharing health summaries between the patient and the healthcare provider and provides relative advantage to both, in achieving positive health outcomes. Figure 1. My digital healthcare record: innovation, adoption, literacy and empowerment model

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Source: Proposed Conceptual Model

First, ‘Relative Advantage’ is defined as “the degree to which an innovation is perceived as being better than the idea it supersedes” (Rogers, 2003, p. 229) and an innovation is considered cost-effective and economical to adopt and use by the society. Second, ‘Compatibility’ with electronic information and communication technologies is defined as “the degree to which an innovation is perceived as consistent with the existing values, past experiences, and needs of potential adopters” (Rogers, 2003, p. 240). Third, ‘Complexity’ is defined as, “the degree to which an innovation is perceived as relatively difficult to understand and use” (Rogers, 2003, p. 257). Fourth, ‘Observability’ refers to “the degree to which the results of an innovation are visible to others” (Rogers, 2003, p. 258), in terms of positive benefits of usage such as patient empowerment and self-management and empowerment of health. Fifth, Universal Adoptability, is defined by authors as an ability of everyone or population at large willing to learn new skills and to adopt and engage in new ways of doing things. For example, new ways of using and managing e-Health related online ‘MyHRC’ summaries by using internet communication technologies. These five independent variables of innovation diffusion are influenced by three dependent variables of e-Health Literacy: (i) the information search about ‘MyHRC’ registration and usage; (ii) health information appraisal of quality of information search and processing information; (iii) benefits derived from e-Health information literacy and internet technology literacy to the consumer in context of managing

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 My Digital Healthcare Record

health summaries on line. Therefore, e-Health information literacy in return results in patient empowerment to manage and control their personal health summaries as to who sees and uses it to achieve patient’s good health and wellbeing.

FUTURE RESEARCH DIRECTIONS Future research could collect interview data with the doctors/physicians and the patients/consumers to test the validity of the qualitative findings, followed by quantitative survey with the patients/consumers. Studies can also survey consumer/patient satisfaction with the use of ‘MyHRC’ by purposeful sampling of diverse population belonging to different demographic groups, education, gender characteristics and rural urban setting, due to digital divide. Such as youth, middle age, retired population, Aboriginal and Torres Strait Islanders, migrants from CALD population sample and people with low and high literacy rate including those who are physical and mentally challenged. The hypothesised relationship between digital health literacy, improves communication and enhances self-care health management can be explored and empirically tested with different groups of people for example youth, retired Australians, Aboriginal and Torres Strait Islanders and CALD migrant population in regional Australia.

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CONCLUSION This chapter concludes that there are many benefits and challenges in adoption and use of digital ‘MyHRC’ in Australia. It concludes that the use of digital technologies like ‘MyHRC’ requires health literacy as well as digital literacy which will empower patients to manage their health and wellbeing. The authors identified benefits and challenges and proposed a conceptual model for future data collection and research by qualitative interviews and quantitative survey of the healthcare providers and the users of digital ‘MyHRC’. It will lead to better communication between the physician and the patient with the objective of healthcare self-management and empowerment. However, adults and senior citizens still fear privacy and security of patient healthcare data, and therefore show lack of interest in registering and learning to use the health information. People thus do not recognise the potential benefits of use of digital ‘MyHRC’ in context of improved communication with their general practitioner to manage their health information, resulting in positive healthcare outcomes. Patients therefore need basic health as well as information technology literacy, to be able to communicate and use the online digital health record for their health benefit. Further, income inequality, illiteracy, linguistically diverse ethnic population with poor health and lack of information technology literacy, are few of the major reasons for low up-take of digital ‘MyHRC’ in Australia.

REFERENCES Andrews, L., Gajanayake, R., & Sahama, T. (2014). The Australian general public’s perceptions of having a personally controlled electronic health record. International Journal of Medical Informatics, 83(12), 889–900. doi:10.1016/j.ijmedinf.2014.08.002 PMID:25200198

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Archer, N., Fevrier-Thomas, U., Lokker, C., McKibbon, K. A., & Straus, S. E. (2011). Personal Health records: A scoping review. Journal of the American Medical Informatics Association, 18(4), 515–522. doi:10.1136/amiajnl-2011-000105 PMID:21672914 Atienza, A. A., Zarcadoolas, C., Vaughon, W., Hughes, P., Patel, V., Chou, W.-Y., & Pritts, J. (2015). Consumer Attitudes and Perceptions on mHealth Privacy and Security: Findings from a Mixed-Methods Study. Journal of Health Communication, 20(6), 673–679. doi:10.1080/10810730.2015.1018560 PMID:25868685 Australian Digital Health Agency. (2018a). My health record opt-out period extended to 31 January 2019. Available from https://www.myhealthrecord.gov.au/news-and-media/my-health-record-stories/ opt-out-period-extended-january-2019 Australian Digital Health Agency. (2018b). Annual Report 2017-2018. Available from https://www. digitalhealth.gov.au/about-the-gency/publications/reports/annual-report/Annual_Report_Australian_ Digital_Health_Agency_2017-2018_Online.pdf Australian Digital Health Agency (ADHA). (2019). MyHRC. Available from https://www.myhealthrecord.gov.au/for-you-your-family/what-is-’MyHRC’ Australian Government. (2016a). Welcome to ‘MyHRC’. Available from https://myhealthrecord.gov.au/ internet/mhr/publishing.nsf/content/home Australian Government. (2016b). ‘MyHRC’s Rule 2016. Available from https://www.legislation.gov.au/ Details/F2016C00607 Australian Government. (2019a). Health Portfolio Additional Estimates Statements 2018-19. Department of Health. Available from https://www.health.gov.au/resources/publications/health-portfolio-budgetstatements-2018-19 Australian Government. (2019b). Impact of digital health on the safety and quality of healthcare. Available from https://www.oaic.gov.au/privacy/other-legislation/my-health-record/ Australian Government. (2019c). My Health Record Statistics. Available from https://www.myhealthrecord.gov.au/sites/default/files/my_health_record_dashboard_-_28_july_2019.pdf?v=1565831963 Baldwin, J. L., Singh, H., Sittig, D. F., & Giardina, T. D. (2017). Patient portals and health apps: Pitfalls, promises, and what one might learn from the other. Health Care, 5(3), 81–85. PMID:27720139

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BBC. (2018, July 20). Singapore personal data hack hits 1.5m, health authority says. Available from https://www.bbc.com/news/world-asia-44900507 Birru, M. S., Monaco, V. M., Charles, L., Drew, H., Njie, V., Bierria, T., ... Steinman, R. A. (2004). Internet usage by low-literacy adults seeking health information: An observational analysis. Journal of Medical Internet Research, 6(3), e25. doi:10.2196/jmir.6.3.e25 PMID:15471751 Bratan, T., Stramer, K., & Greenhalgh, T. (2010). ‘Never heard of it’– Understanding the public’s lack of awareness of a new electronic patient record. Health Expectations, 13(4), 379–391. doi:10.1111/j.13697625.2010.00608.x PMID:20579117

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Chhanabhai, P., & Holt, A. (2007). Consumers are ready to accept the transition to online and electronic records if they can be assured of the security measures. General Medicine (Los Angeles, Calif.), 9(1), 8. PMID:17435617 Clark, N. M., Gong, M., & Kaciroti, N. (2001). A model of self-regulation for control of chronic disease. Health Education & Behavior, 28(6), 769–782. doi:10.1177/109019810102800608 PMID:11720277 Clark, N. M., Rosenstock, I., Hassan, H., Wasilewski, Y., Evans, D., Feldman, C., & Mellins, R. (1998). The effect of health beliefs and feelings of self-efficacy on self-management behavior of children with a chronic disease. Patient Counseling and Education, 11(2), 131–139. doi:10.1016/0738-3991(88)90045-6 Clark, N. M., Starr-Schneidkraut, N. J., & Windsor, R. A. (1994). Management of asthma by patients and families. American Journal of Respiratory and Critical Care Medicine, 149(2), 554–556. doi:10.1164/ ajrccm/149.2_Pt_2.S54 PMID:8298769 Commonwealth of Australia. (2012). ‘MyHRC’s Act 2012 (Australia). Available from https://www. legislation.gov.au/Series/C2012A00063 Commonwealth of Australia. (2015). ‘MyHRC’s Regulation 2012 (Australia). Available from https:// www.legislation.gov.au/Details/F2016C00093 Coughlin, S. S., Stewart, J. L., Young, L., Heboyan, V., & DeLeo, G. (2018). Health Literacy and Patient Web Portals. International Journal of Medical Informatics, 113(1), 43–48. doi:10.1016/j.ijmedinf.2018.02.009 PMID:29602432 Creswell, J. W. (2014). Research Design: Qualitative, Quantitative, and Mixed Methods Approaches (4th ed.). Thousand Oaks, CA: SAGE Publications. Department of Health. (2016, March). MyHRC. Canberra: Australian Government. Available from https://myhealthrecord.gov.au/internet/mhr/publishing.nsf/ Farzandipour, M., Sadoughi, F., Ahmadi, M., & Karimi, I. (2010). Security requirements and solutions in electronic health records: Lessons learned from a comparative study. Journal of Medical Systems, 34(4), 629–642. doi:10.100710916-009-9276-7 PMID:20703917

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Fernández-Alemán, J. L., Carrión Señor, I., Lozoya, P. L. O., & Toval, A. (2013). Security and privacy in electronic health records: A systematic literature review. Journal of Biomedical Informatics, 46(3), 541–562. doi:10.1016/j.jbi.2012.12.003 PMID:23305810 Fernando, J., & Dawson, L. (2009). The health information system security threat lifecycle: An informatics theory. International Journal of Medical Informatics, 78(12), 815–826. doi:10.1016/j.ijmedinf.2009.08.006 PMID:19783203 Fry, C. L., Spriggs, M., Arnold, M., & Pearce, C. (2014). Unresolved ethical challenges for the Australian Personally Controlled Electronic Health Record (PCEHR) system: Key informant interview findings. AJOB Empirical Bioethics, 5(4), 30–36. doi:10.1080/23294515.2014.919972 Georgiou, A., & Prgomet, M. (2018). E-Health: Developing trust, confidence, quality and sustainability. The HIM Journal, 4(2), 59–61. doi:10.1177/1833358318808064 PMID:30392402

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Gleason, A. W. (2015). mHealth-Opportunities for Transforming Global Healthcare and Barriers to Adoption. Journal of Electronic Resources in Medical Libraries, 12(2), 114–125. doi:10.1080/154240 65.2015.1035565 Greenlalgh, T., Hinder, S., Stramere, K., Bratan, T., & Russell, J. (2010). Adoption, non-adoption, and abandonment of a personal electronic health record: Case study of HealthSpace. Biomedical Journal, 341, c5814. PMID:21081595 Guo, U., Chen, L., & Mehta, P. H. (2017). Electronic health record innovations: Helping physicians – One less click at a time. The HIM Journal, 43(3), 140–144. doi:10.1177/1833358316689481 PMID:28671038 Haas, S., Wohlgemuth, S., Echizen, I., Sonehara, N., & Müller, N. (2011). Aspects of privacy for electronic health records. International Journal of Medical Informatics, 80(2), 26–31. doi:10.1016/j. ijmedinf.2010.10.001 PMID:21041113 Hanna, L., Gill, S. D., Newstead, L., Hawkins, M., & Osborne, R. H. (2017). Patient perspectives on a personally controlled electronic health record used in regional Australia: ‘I can be like my own doctor’. The HIM Journal, 46(1), 42–48. doi:10.1177/1833358316661063 PMID:27486184 Health Information Management Association of Australia Limited (HIMAA). (2019). Educational Services for Health Information Professionals. Available from http://himaa2.org.au/education/?q=node/2 Hemsley, B., Georgiou, A., Carter, R., Hill, S., Higgins, I., van Vlient, P., & Balandin, S. (2016). Use of the ‘MyHRC’ by people with communication disability in Australia: A review to inform the design and direction of future research. The HIM Journal, 45(3), 107–115. doi:10.1177/1833358316652060 PMID:27269277 Hemsley, B., McCarthy, S., Adams, S., Georgiou, A., Hill, S., & Balandin, S. (2017). Legal, ethical, and rights issues in the adoption and use of the “MyHRC’ by people with communication disability in Australia. Journal of Intellectual & Developmental Disability, 43(4), 506–514. doi:10.3109/13668250 .2017.1294249 Hemsley, B., Rollo, M., Georgiou, A., Balandin, S., & Hill, S. (2018). The health literacy demands of electronic personal health records (e-PHRs): An integrative review to inform future inclusive research. Patient Education and Counseling, 101(1), 2–15. doi:10.1016/j.pec.2017.07.010 PMID:28864052

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Kerai, P., Wood, P., & Martin, M. (2014). A pilot study on the views of elderly regional Australians of personally controlled electronic health records. International Journal of Medical Informatics, 83(3), 201–209. doi:10.1016/j.ijmedinf.2013.12.001 PMID:24382474 Kim, M. I., & Johnston, K. B. (2002). Personal Health Records: Evaluation of Functionality and Utility. Journal of the American Medical Informatics Association, 9(2), 171–180. doi:10.1197/jamia.M0978 PMID:11861632 Lee, Y. H., Hsieh, Y. C., & Hsu, C. N. (2011). Adding innovation diffusion theory to the technology acceptance model: Supporting employees’intentions to use E-Learning systems. Journal of Educational Technology & Society, 14(4), 124–137.

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Lehnbom, E. C., McLachlan, A., & Brien, J. A. (2012). A qualitative study of Australians’ opinions about personally controlled electronic health records. Studies in Health Technology and Informatics, 178, 105–110. PMID:22797027 Lin, T. C., & Bautista, J. R. (2017). Understanding the Relationships between mHealth Apps’ Characteristics, Trialability, and mHealth Literacy. Journal of Health Communication, 22(4), 346–354. doi:1 0.1080/10810730.2017.1296508 PMID:28323546 Ludwick, D. A., & Doucette, J. (2009). Adopting electronic medical records in primary care: Lessons learned from health information systems implementation experience in seven countries. International Journal of Medical Informatics, 78(1), 22–31. doi:10.1016/j.ijmedinf.2008.06.005 PMID:18644745 Mitchell, B., & Begoray, D. (2010). Electronic Personal Health Records That Promote Self-Management in Chronic Illness. OJIN: The Online Journal of Issues in Nursing, 15(3). doi:10.3912/OJIN.Vol15No03PPT01 Nambisan, P., Kreps, G. L., & Polit, S. (2013). Understanding electronic medical record adoption in the United States: Communication and sociocultural perspectives. Interactive Journal of Medical Research, 2(1), e5. doi:10.2196/ijmr.2437 PMID:23612390 Otte-Trojel, T., de Bont, A., Rundall, T. G., & van de Klundert, J. (2014). How outcomes are achieved through patient portals: A realist review. Journal of the American Medical Informatics Association, 21(4), 751–757. doi:10.1136/amiajnl-2013-002501 PMID:24503882 Paasche-Orlow, M., Parker, R., Gazmararian, J., Nielsen-Bohlman, L., & Rudd, R. (2005). The prevalence of limited health literacy. Journal of General Internal Medicine, 20(2), 175–184. doi:10.1111/j.15251497.2005.40245.x PMID:15836552 Queensland Health. (2017). Digital Health Strategic Vision for Queensland 2026. State of Queensland: Queensland Health. Available from https://www.health.qld.gov.au/__data/assets/pdf_file/0016/645010/ digital-health-strat-vision.pdf Rogers, E. M. (2003). Diffusion of innovations. New York, NY: Simon and Schuster. Russo, E., Sittig, D. F., Murphy, D. R., & Singh, H. (2018). Challenges in patient safety improvement research in the era of electronic health records. Health Care, 4(4), 285–290. PMID:27473472

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Shaw, T., Hines, M., & Kielly-Carroll, C. (2017). Impact of Digital Health on the Safety and Quality of Healthcare. Sydney: ACSQHC Available from https://www.safetyandquality.gov.au/ Sittig, D. F. (2002). Personal health records on the internet: A snapshot of the pioneers at the end of the 20th Century. International Journal of Medical Informatics, 65(1), 1–6. doi:10.1016/S13865056(01)00215-5 PMID:11904243 Sittig, D. F., Belmont, E., & Singh, H. (2018). Improving the safety of health information technology requires shared responsibility: It is time we all step up. Health Care, 6(1), 7–12. PMID:28716376 Spriggs, M., Arnold, M. V., Pearce, C. M., & Fry, C. (2012). Ethical questions must be considered for electronic health records. Journal of Medical Ethics, 38(9), 535–539. doi:10.1136/medethics-2011-100413 PMID:22573881

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Stevenson, J. E., & Nilsson, G. (2012). Nurses’ perceptions of an electronic patient record from a patient safety perspective: A qualitative study. Journal of Advanced Nursing, 68(3), 667–676. doi:10.1111/j.13652648.2011.05786.x PMID:21781148 Tomlinson, J. (2019). My Health Record implementation in private specialist practice. The Medical Journal of Australia, 210(6), S32–S34. doi:10.5694/mja2.50030 PMID:30927474 Torrens, E., & Walker, S. M. (2017). Demographic characteristics of Australian health consumers who were early registrants for opt-in personally controlled electronic health records. The HIM Journal, 46(3), 127–133. doi:10.1177/1833358317699341 PMID:28537210 van Dooren, K., Lennox, N., & Stewart, M. (2013). Improving access to electronic health records for people with intellectual disability: A qualitative study. Australian Journal of Primary Health, 19(4), 336–342. doi:10.1071/PY13042 PMID:23962451 von Wagner, C., Steptoe, A., Wolf, M. S., & Wardle, J. (2009). Health literacy and health actions: A review and a framework from health psychology. Health Education & Behavior, 36(5), 860–877. doi:10.1177/1090198108322819 PMID:18728119 Walsh, L., Hemsley, B., Allan, M., Dahm, M., Balandin, S., Georgiou, A., ... Hill, S. (2019). Assessing the quality and usability of ‘MyHRC’ within a health literacy framework: What’s changed since 2016? The HIM Journal, 1–13. doi:10.1177/1833358319864734 PMID:31370712 Walsh, L., Hill, S., Allan, M., Balandin, S., Georgiou, A., Higgins, I., ... Hemsley, B. (2018). A content analysis of the consumer-facing online information about ‘MyHRC’: Implications for increasing knowledge and awareness to facilitate uptake and use. The HIM Journal, 4(6), 106–116. doi:10.1177/1833358317712200 PMID:28589741 Williams, S., & Cooper (2006). Culture-based Literacy and Aboriginal Health. Canadian Journal of Public Health, 97(S21). Wood, S., Schwartz, E., Tuepker, A., Pres, N. A., Nazi, K. M., Turvery, C., & Nichol, W. P. (2013). Patient Experiences with Full Electronic Access to Health Records and Clinical Notes Through the My HealtheVet Personal Health Record Pilot: Qualitative Study. Journal of Medical Internet Research, 15(3), e65. doi:10.2196/jmir.2356 PMID:23535584

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World Health Organisation (WHO). (2019). Defining Health Literacy. Available from https://www.who. int/healthpromotion/conferences/7gchp/track2/en/ Yin, R. K. (2017). Case study research and applications: Design and Methods. Thousand Oaks, CA: SAGE Publications. Yoo, S., Kim, S., & Lee, K. H. (2013). A study of user requests regarding the fully electronic health record system at Seoul National University Bundang Hospital. Studies in Health Technology and Informatics, 192, 1015. PMID:23920789 Zulman, D., Nazi, K. M., Turvey, C. L., Wagner, T. H., Woods, S., & An, L. C. (2011). Patient, interest in sharing personal health record information: A web-based survey. Annals of Internal Medicine, 155(12), 805–810. doi:10.7326/0003-4819-155-12-201112200-00002 PMID:22184687

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Zurita, L., & Nøhr, C. (2004). Patient opinion–EHR assessment from the user’s perspective. Studies in Health Technology and Informatics, 107(2), 1333–1336. PMID:15361031

ADDITIONAL READING Australian Commission on Safety and Quality in Healthcare. (n.d.). Publications and Resources. Available from https://www.safetyandquality.gov.au/publications-and-resources Cillers, L., Viljoen, K. L.-A., & Chinyamurindi, W. T. (2018). A study on students’ acceptance of mobile phone use to seek health information in South Africa. The HIM Journal, 47(2), 59–69. doi:10.1177/1833358317706185 PMID:28537211 Dehnavieh, R., Haghdoost, A., Khosravi, A., Hoseinnabadi, F., & ... . (2019). The District Health Information System (DHIS2): A literature review and meta-synthesis of its strengths and operational challenges based on the experiences of 11 countries. The HIM Journal, 48(2), 62–75. doi:10.1177/1833358318777713 PMID:29898604 Hay, P., Wilton, K., Barker, J., Mortley, J., & Cumerlato, M. (2019). The importance of clinical documentation improvement for Australian hospitals. The HIM Journal, 1-5. doi:10.1177/1833358319854185 PMID:31303061 Otte-Trojel, T., De Bont, A., Rundall, T. G., & van de Klundert, J. (2016). What do we know about developing patient portals? a systematic literature review. Journal of the American Medical Informatics Association, 23(e1), e162–e168. doi:10.1093/jamia/ocv114 PMID:26335985 Sher, M.-L., Talley, P. C., Cheng, Y.-J., & Kuo, K.-M. (2017). How can hospitals better protect the privacy of electronic medical records? Perspectives from staff members of health information management departments. The HIM Journal, 46(2), 87–95. doi:10.1177/1833358316671264 PMID:27702792 Yazdanpanah, A., Parsaei, A., & Jeihooni, A. K. (2018). The role of digital marketing in medical tourism industry in point of view of medical tourism policy makers of Shiraz in 2017. Universal Journal of Pharmaceutical Research, 3(1), 1–6. doi:10.22270/ujpr.v3i2.128

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KEY TERMS AND DEFINITIONS Digital Health: Digital health also known as e-Health is a system where computer technologies and tele-medicine is used to connect, communicate and manage healthcare information, manage health risk, promote health and wellbeing by the providers/ clinicians and the people/patients. Use of information and communication technologies help to enhance efficient delivery of health information and communication between the physician and the patient and empowers the patient to manage their health and health records. E-Health Literacy: With the diffusions of internet technology, e-Health literacy means peoples knowledge and skills to use innovative internet and communication technologies and devices such as laptop, tablet, and mobile phone apps to search for health information which is appropriate for health decision making process and communicate effectively with the doctor.

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 My Digital Healthcare Record

Health Innovation: Disruptive technologies like the use of digital ‘MyHRC’, e-Health Record is a technological innovation in healthcare used by the healthcare providers, clinicians, nurses, administrators, insurance agencies and the patients. These healthcare innovations empower the people/patients to keep health records, manage and improve our health. For example, digital devices and technologies are used for keeping records of steps taken during the day, daily diet, medicine, sports, and overall wellbeing to improve overall health, wellbeing and knowledge. Health Literacy: Health literacy is the ability of the people to acquire, read and understand basic healthcare information such as prescription, x-ray and blood tests results, in order to make health related informed decisions for managing and improving one’s health and wellbeing. Mobile Health: Mobile health devices is considered a subset of e-Health. It is the use of internet, tablets and mainly smart-phone devices and mobile phone Apps to adopt, access, communicate and share my health information and records between the patient and the medical doctor in real time to improve health outcomes. My Health Record: ‘MyHRC’ is a password and user name protected online information about an individual’s health reports. These reports are managed by the patient, who provides permission to allow hospitals, doctors, and other healthcare providers to access these records.

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This research was previously published in Opportunities and Challenges in Digital Healthcare Innovation; pages 131-150, copyright year 2020 by Medical Information Science Reference (an imprint of IGI Global).

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Chapter 31

Technologized Talk:

Wearable Technologies, Patient Agency, and Medical Communication in Healthcare Settings Erin Trauth High Point University, High Point, USA Ella R. Browning University of Pennsylvania, Philadelphia, USA

ABSTRACT In this study, the authors examine patient use of and feelings about wearable technologies for health attainment and management. Based on an online survey of 81 patients using wearable technologies to track and manage health, as well as interviews with three patients utilizing wearables for health management, the authors examine how wearable technologies are being used by patients to attain health, manage health, and/or prevent health issues, and what value users find in these wearable technologies. The authors also examine how such use is impacting communication between medical professionals and patients. Specifically, the authors explore how the inclusion of wearable technologies has changed the “rhetorical relationship” between patients and medical professionals. The study concludes with a discussion of the future of wearable devices in patient-medical practitioner relationships and clinical settings.

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INTRODUCTION In November 2017, the U.S. Food and Drug Administration (FDA) announced its approval of Abilify MyCite, the first human-ingested digitally trackable pill. Within the pill, a sensor records that the medication has entered the patient’s body. Abilify MyCite is designed for use with patients in the treatment of schizophrenia, bipolar I disorder, and, possibly, as a supplement to depression management. Once ingested, the pill communicates from the pill sensor to a wearable patch, which then transmits information to a smartphone. Patients and approved caregivers and physicians can access the medication DOI: 10.4018/978-1-6684-2414-8.ch031

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Research Anthology on Improving Health Literacy Through Patient Communication and Mass Media, edited by Association, Information Resources Management, IGI Global, 2021. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/nyulibrary-ebooks/detail.action?docID=6686709. Created from nyulibrary-ebooks on 2021-09-02 06:30:41.

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 Technologized Talk

ingestion information through a web portal. In its press release about Abilify MyCite, the FDA noted that “Abilify MyCite’s prescribing information (labeling) notes that the ability of the product to improve patient compliance with their treatment regimen has not been shown” (FDA, 2017). The approval of Abilify MyCite brings up important questions of patient compliance, patient-physician communication, and patient privacy. While the ability to track medication ingestion is promising for many cases, patients may find a wearable so “all knowing” and invasive to be problematic. Although medication is prescribed in the interest of the patient, concerns about surveillance at this level are real and unprecedented. In the instance of Abilify MyCite, we are faced with an example of a wearable technology and associated tool that can potentially help bridge gaps in medication compliance. However, the question remains: will patients be willing to comply with such tracking? And how might this particular type of wearable technology complicate—rather than facilitate—communication between patients and their doctors? Abilify MyCite may seem an extreme example of the potential invasiveness of wearable technologies, but, at all levels, wearable technologies continue to redefine what it means to be human and what it means to “know” about one’s body through the collected (and possibly shared) data. Through wearables, embodied computers, smart jewelry, and other devices, we can track, analyze, and modify behaviors impacting our physical and mental health, productivity, communication, and daily routines like never before. As such, we are moving towards a truly technologized state of being and identity. In the realm of health communication, particularly when we consider the data we can now gather about our bodies and health through wearable technologies, the impact of wearables on the patient/medical practitioner relationship is shifting in unprecedented ways. Abilify MyCite is just one example. Mobile health applications, health and fitness trackers, and even telemedicine is all shifting how and when we make health decisions, as well as who we consult (or do not consult) and when. As users, many of these technologies collect and provide us with data for which we may have had to consult a medical professional to gain access in the past, increasing the level of control many of us feel we have with regards to our bodies. Wearables are thus shifting our sense of agency about our own health. For those of us with a stake in the current and future development of the next generation of medical practitioners, considering the ways wearable technologies have changed the rhetorical relationships among patients and medical practitioners is particularly important. Scholars in professional and technical communication have long explored the rhetorical relationships among and between individuals, groups, systems, organizations, and institutions, among other things. By rhetorical relationship we mean a relationship that likely changes based on changes in the rhetorical situation on which it relies. Bitzer (1968) described the rhetorical situation as “a natural context of persons, events, objects, relations, and an exigence which strongly invites utterance” (p. 5). A rhetorical relationship, then, is one that changes when one of these components of the rhetorical situation on which the relationship is based shifts in some way: context, persons involved, events, objects, relations, exigence. Perhaps the people involved change; for example, a shift would occur if a patient gets a new doctor. Perhaps an object around which the relationship has in the past been based upon changes or goes away; we would see a change if a patient gets a new pacemaker. Perhaps the relationship among the people involved evolves in some way; a shift would occur if a patient uses a wearable technology to develop more expertise about her health and uses it in discussions with her doctor. If a patient has an encounter with a doctor at a clinic or hospital, we typically would define that encounter as “doctor/patient relationship.” However, the term “doctor/patient relationship” is in fact shorthand for the rhetorical relationship that develops as a result of a particular rhetorical situation. That is, “doctor/patient relationship” is shorthand 559

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 Technologized Talk

for the context, persons involved, events, objects, relations and exigence, including professional and legal factors that help patient and medical professionals shape their expectations of each other. Implicitly or explicitly, trust and levels of expertise are important components of this relationship. Later in our discussion, we will see how trust and levels of expertise become particularly important variables in the changing rhetorical relationship among patients and medical professionals. A few examples are a useful way to elucidate what we mean by a “rhetorical relationship” in the context of this study and in the context of this research area. In 2000, for example, focusing on HIV/ AIDS policy, Grabill argued for what “activist” technical writing might look like if we were to understand “policy making as a function of institutionalized rhetorical processes…” He described particular institutional formations as “local manifestation[s] of more general social relations, a nodal point in what [he] would call a rhetorical relationship between general social (if not sociological) processes and local practices” (Grabill, 1999). In this case, “rhetorical relationship” refers to a relationship among processes, practices, institutions, and social relations in a particular context. As components of the rhetorical situation on which this relationship is based shift – general social processes and local practices in a specific time and place – the institutional formations themselves, which Grabill sees as manifestations of this relationship and thus of this particular situation, shift as well. In 1999, Herrick used stories collected during an ethnography of communication at a plastics company to argue for “a rhetorical relationship of gender, language, and power” (p. 276). Herrick clarifies what she means by this particular rhetorical relationship: “How women use language in specific instances is not a matter of biology or early socialization as much as a matter of how they rhetorically engage the situation of the moment” (1999, p. 276). In this case, the “rhetorical relationship” Herrick identifies again relies on a specific rhetorical situation that involves the interplay of context, persons involved, events, objects, relations, exigence. For Herrick, that may include processes, practices, institutions, gender, language, and experiences or interpretations of power. And in 2007, Emmons focuses on the discursive construction of depression and ultimately “argue[s] that the now ubiquitous genres of the symptoms checklist and the self-diagnostic quiz organize a complex, rhetorical relationship among these principal figures in the narrative of mental health and that they help construct depression itself as an illness” (p. 1). Here, genres and the way that they reflect and construct understandings of depression are added to our understanding of the rhetorical relationship. For scholars in professional and technical communication, then, rhetorical relationships are relationships that are based on a particular rhetorical situation. When that rhetorical situation changes, so, too, does the rhetorical relationship on which it is based. Rhetorical relationships are thus contextually-based, and rely on shifting interactions between the various persons, events, objects, relations, and exigence involved. When a rhetorical relationship appears to shift, likely this tells us something about how the interactions between the various components of the rhetorical situation on which it is based have also shifted. They can be localized, but they may also be a reflection of larger issues at play, such as federal regulations, cultural values, or current events. For example, when the federal government in the U.S. allows states to set work requirements for people who receive Medicaid, while these are large-scale federal decisions being made at the national level, they will have localized impact on the rhetorical relationships among individual people across the country. Parties involved in a given rhetorical relationship may be individuals or they may be groups or institutions, humans or non-humans. Pressures may be clearly apparent or more subtle. Individual positionality –and the power such positionality has or does not have - plays a role. Any change in the context, persons, events, objects, relations, or exigence of a given rhetorical situation will shape the way that a rhetorical relationship based on such a situation also changes. 560

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In this article, we examine the shifting relationship between patients and medical practitioners in light of wearable technologies, positioning wearable technologies as a change in the rhetorical situation on which the typical rhetorical relationship between patients and medical practitioners is based. Specifically, we seek to understand the extent to which wearables are changing conceptualizations of privacy, choice, and the sense of who has agency in medical and health communications, as well as potential impacts to the patient and medical practitioner relationship in clinical settings. It was our initial hypothesis that wearable devices are indeed re-shaping patient/medical professional relationships. We assert, however, that limitations and privacy concerns about the data shared via the devices hinder the capabilities of the devices in many situations. We also assert that medical professionals generally would be/are willing to discuss wearable device data with patients. However, wearable technologies’ use in diagnosis and long-term health management is not yet being taken advantage of in part because wearable technologies and the data they produce cannot yet be trusted. From the medical professional standpoint, we believe this is because the data tracked cannot yet be proved accurate or consistent across patients; additionally, medical professionals lack control of the devices and their data points and therefore, we assert full trust cannot be placed in these devices. To accomplish our task, we first review relevant literature. As researchers coming from the field of health and medical rhetoric, we begin with a focus on our field’s work in this area. While scholars in this area have recently explored the rhetorical impact of wearables (Jack, 2016; Teston, 2016; Kessler, 2016), we are especially interested in extending our literature review into medical and health communication journals in order to incorporate practitioner perspectives, especially on what has been called the “Quantified Self” (Hänsel, Wilde, Haddadi & Alomainy, 2015; Shantz & Veillette, 2014; Vallurupalli, Paydak, Agarwal, Agrawal & Assad-Kottner, 2013). Finally, to conclude our literature review we briefly review key principles of sociotechnical design as they relate to and help to frame the focus of this study. These are central to our results and to our discussion later in the piece. After our literature review, we provide the results of a survey of 81 patients using wearable technologies to monitor health-related issues or maintain health, along with the results of three follow-up interviews of patients using wearable technologies for health purposes. We then analyze the data and discuss the ways wearable technologies appear to be changing health and medical communication between patients and medical professionals: that is, how the rhetorical relationship between patients and medical professionals appear to be changing because of the addition of wearable technologies. We conclude our study with a discussion of how this change in the rhetorical relationship between patients and medical professionals likely reflects an underlying shift in the rhetorical situation on which it is based. In other words, we argue that wearable technologies change the rhetorical situation – the context, persons, events, objects, relations, and/or exigence – on which previous rhetorical relationships between patients and medical professionals is based. We end the article with a list of practitioner takeaways in light of the considerations brought up by surveyed patients, along with suggestions for future studies.

LITERATURE REVIEW The early 2000s saw an increase in scholars engaging with wearable technologies in general. Often theorizing future possibilities, researchers suggested that wearables might prevent problems related to key challenges facing medicine at that time (Binkley, 2003; Park & Jayaraman, 2003), explored the “remarkable” and “novel” potential impact of these technologies on clinical practices (Bonato, 2005; 561

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Patel, Hughes, Hester, Stein, Akay, Dy, & Bonato, 2010) and specific patient groups (Bonato, 2009; Najafi, Horn, Marclay, Crews, Wu & Wrobel, 2010), and even predicted the rise of the “smart jewelry” seen today (Miner, Chan & Campbell, 2001). Recent research in the field of rhetoric has focused on the complicated and sometimes contradictory rhetorical implications of such devices beyond simply affording individual agency and empowerment within a “culture of health” (Teston, 2016). For example, Christa Teston critiqued techno scientific progress alongside health disparities among vulnerable populations (2016), Jordynn Jack analyzed the breast pump as embodied rhetoric that both disrupts and is produced by gendered differences (2016), and Margaret Molly Kessler analyzed the ostomy pouch as a non-mainstream wearable (2016). Other researchers have taken a historical approach to wearable technologies, studying how contemporary wearable technologies can be situated within historical discourses of self-tracking and self-measurement through an analysis of their relationships to their predecessor, the weight scale (Crawford, Lingel & Karppi, 2015) and, similarly, the ways that a vision of technologically assisted self-regulation drives the development of such devices (Schüll, 2016). Importantly, this increase in attention to wearables has required scholars engaging with such research to articulate a working definition of this kind of technology. In their introduction to the 2016 special issue of Rhetoric Society Quarterly on “Wearable Rhetorics: Bodies, Cities, Collectives,” editors Catherine Gouge and John Jones define “wearables” as “those technologies, electronic or otherwise, whose primary functionality requires that they be connected to bodies” (Gouge & Jones, 2016, p. 201). We included a modified version of this definition in our surveys as well. We begin with it here in order to accomplish a similar goal: to provide an operational definition with which we can move forward towards further analysis and discussion. Other scholars have turned their attention not to wearables themselves but to the community that has embraced them, often referred to as “the Quantified Self (QS) community” (Hänsel, Wilde, Haddadi & Alomainy, 2015). Hänsel, et. al., define the QS trend as “the quantification of aspects within our lives in order to allow us to reflect, learn and improve by collecting data and analyzing it” (2015). Also referred to as “quantified self-tracking,” the QS trend does not necessarily refer only to wearable technologies. Swan (2009) offers a similar definition of quantified self-tracking as “the regular collection of any data that can be measured about the self such as biological, physical, behavioral or environmental information. Additional aspects may include the graphical display of the data and a feedback loop of introspection and self-experimentation…” She continues, describing an underlying assumption of many of the users of such devices as the notion that “data is an objective resource that can bring visibility, information and action to a situation quickly, and psychologically there may be an element of empowerment and control” (Swan, 2009). We see similar assumptions in some of our survey responses from wearable users. Importantly, Swan notes that quantified self-tracking does not necessarily refer solely to wearable technologies, but could include websites or other digital devices used to track quantifiable personal information (2009). Interestingly, although both movements ostensibly collect similar kinds of data, some scholars have positioned the QS movement as an alternative to the big data movement (Nafus & Sherman, 2014). In their ethnography of the QS movement, Nafus and Sherman (2014) describe QS users as …constitute[ing] an important modality of resistance to dominant modes of living with data, an approach that we call ‘soft resistance.’ Soft resistance happens when participants assume multiple roles as project designers, data collectors, and critical sense-makers who rapidly shift priorities. Participants’ constant shifting of their roles keeps data sets fragmented and thus creates material resistance to traditional modes

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of data aggregation. It also breaks the categories that make traditional aggregations appear authoritative. This enables participants to partially yet significantly escape the frames created by the biopolitics of the health technology industry. (Nafus & Sherman, 2014, p. 1784) In other words, soft resistance is a way for users to actively change the rhetorical situation on which their presumed rhetorical relationship with this data is based. Users are actively and agentively working to change the context, persons, events, objects, relations, and / or exigence in this particular rhetorical situation, thus also changing – and in many ways, resisting – the presumed relationship they “should” have with the health technology industry. Wearable technology users, especially those interested in primarily health related data, can thus be understood as a complex community taking ownership of their own quantified selves in the face of a technologized health industry in which they have little agency or voice – or, at the very least, attempting to do so. We see similar complexity in the responses gathered via our surveys of both medical practitioners and of patients using wearable technologies. A variety of issues are raised in the above descriptions and definitions of wearable users, wearable technology, the quantified self-tracking movement, and QS trends generally speaking: trust, agency, authority, use of information, and the multiple roles wearable users inhabit in tracking data about their own bodies. We see these issues as major components of the rhetorical relationship between patients and medical professionals. We address many of these topics later on in our discussion of our survey results. Finally, it is important to frame this study within a discussion of the sociotechnical. Sociotechnical design principles were originally outlined by Albert Cherns in his 1976 paper. Cherns revisited his principles in 1987 in order to update them. Although they have since been discussed further, applied to different contexts, and, of course, contested, we find these “revisited” principles from Cherns’ 1987 paper a useful place to begin framing our discussion of wearable technologies. Briefly, Cherns’ “revisited” principles of sociotechnical design are as follows:

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Principle 1: Compatibility Principle 2: Minimal Critical Specification Principle 3: Variance Control Principle 4: Boundary Location Principle 5: Information Flow Principle 6: Power and Authority Principle 7: The Multifunctional Principle Principle 8: Support Congruence Principle 9: Transitional Organization Principle 10: Incompletion or the Forth Bridge Principle (Chern, 1987) While Cherns’ sociotechnical design principles typically apply to the design of systems, the values with which a design team approaches a project, and the organizations that support such designs, an important component of evaluating design is understanding how users approach such projects. Put another way, a key aspect of effective sociotechnical design is understanding how people and technologies interact (Coiera, 2004); thus, a sociotechnical approach to understanding wearable technologies would be one exploring the interaction between the social and the technical facilitated by such technologies. Rhetorical relationships are thus central to the sociotechnical. Indeed, sociotechnical design and approaches are of particular importance to researchers and practitioners in healthcare fields. For example, to name just a 563

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few, Berg et al. (1998) used sociotechnical design principles to interrogate the design and implementation of electronic patient records (EPRs) in an Intensive Care Unit; Hasvold and Scholl (2011) used a sociotechnical approach to information system research to explore the design and impact of an operating room scheduler; and Baumer et al. (2013) explored social configurations among users, user groups, and a subsequent user system facilitated by a health app the authors designed using a sociotechnical approach. As stated before, of particular interest to us in this study is the interaction between users and the wearable technologies they utilize, and how this interaction may change the rhetorical situation on which the rhetorical relationships among patients and medical professionals are based. Berg, et al., argue that we must be aware of “the socio–political nature of seemingly ‘neutral’ tools” (1998, p. 243). We see a connection here between the socio-political nature of seemingly “neutral” tools and the QS movement to reclaim user agency. How might a sociotechnical approach help shed light on the ways that seemingly “neutral” tools like wearable technologies change – or do not change – the relationships between patients and their own health, between patients and their medical professionals, and between patients and the wearable technologies themselves? We return to a more thorough discussion of some of these principles as they apply to patients’ use of wearable technologies in our “Discussion” section.

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METHODS For the purposes of this study, we sought to gain further knowledge about the “shifting relationship between patients and medical practitioners in light of wearable technologies” and “understand the extent that wearables are blurring issues of privacy, choice, and the sense of who has agency in medical and health communications, as well as potential impacts to the patient and medical practitioner relationship in clinical settings.” In the past several years, wearable use has become increasingly common across many different demographic and social groups. As such, we chose a survey methodology because we hoped to initially gather a large sample size of patients across the many demographic groups utilizing this technology. We hoped to illuminate trends across many groups of people to gain a baseline understanding of wearable device use across as many different types of users from as many social groups as possible. Additionally, we initially chose an anonymous online survey to allow for added comfort and ease for our many respondents in discussing their own health concerns and fears about their data. Because we sought to ask about issues of potentially sensitive nature in our first stage of research, we also chose an online survey setting so that respondents could write as freely as possible about their concerns. We wanted to encourage responses that were as open and frank as possible to initially gather our themes of further analysis across demographics, and we believe starting with the survey helped accomplish this. Surveys are often limited because of challenges in locating respondents from target groups. Further, the challenges are often increased when we consider the lack of inherent control we, as researchers, have over online surveys sent across many distribution lines. As such, our study cannot produce a full depiction of the state of wearable use and their impacts on patient/medical professional relationships. However, we believe our methods and their findings serve as a starting place for continued discussion in our research and extended discussions with sociotechnical and health communication professionals. We conducted a survey of patients utilizing wearable technologies for health-related purposes (see Appendix I). The survey was built in SurveyMonkey, an online survey tool. SurveyMonkey is a wellknown research tool for academic research, in part because it easily facilitates coding and sorting of data (Sherry, Thomas & Chui, 2010), in part because it allows for collected data to be stored on the site’s 564

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secure survey until downloaded by the researchers (Derby-Davis, 2014), and in part because it enables links to the surveys to be easily shared with a variety of contacts across a variety of social media and socially mediated platforms (Chu, Floyd, Diep, Pardo, Goldblum & Bongar, 2013). We also chose an online format for administering the survey because, as Plumb and Spyridakis (1992) observed, it is the most efficient method for reaching as many respondents as possible. We also considered the differences between print and web format for a survey. We referred to a Computers and Human Behavior study which found that in comparing the two methods, there were no significant differences of concern to a researcher (Huang, 2006). In order to reach the largest sample size possible, then, we opted for a web survey that would be spread across online platforms in as many spaces as possible. We then carefully considered our options for the program to be used for these purposes and found that Survey Monkey provided many options for an online survey format that are user-friendly, accessible, and reliable. Overall, we carefully considered our online survey options and found SurveyMonkey to be both user-friendly and well-designed. SurveyMonkey is also 508 compliant for accessibility purposes. The program provides analysis features such as text analysis, SPSS integration capabilities, custom reports and charts, and filters that allow for cross-tabulation of responses based on our chosen criterion (SurveyMonkey Plans). SurveyMonkey also allows for easy filtering of responses, and the program permits for multiple criteria filtering. The program also features text analysis tools that allowed us to categorize and code open-ended responses. Using the “Cloud View” tool, we were able to search for any key words or phrases within the respondents’ comments and see which words and phrases occurred most frequently through a cloud generation of comments. We were able to categorize and tag responses together based upon the content of respondents’ comments, as well as determine the count and percentages of these tags. Additionally, SurveyMonkey provides many advanced tools and functions to its users, including IP tracking to alert users if the survey was answered more than once from the same address. The SurveyMonkey program is so advanced and reliable, in fact, that corporations such as Facebook, Samsung, and Philips rely on its analysis capabilities to survey respondents. Therefore, we are confident that the program’s analysis tools have provided accurate and data and reporting for our purposes. Full IRB approval was granted for this study (see Appendix II). The proposal was granted exempt status. The survey submissions were stored in one SurveyMonkey account for the duration of the study and were protected via a secure password-protected connection and account. Compensation for the survey was entrance into a random drawing for one gift card per survey. One respondent won the card and was contacted via email only for the purpose of obtaining information to mail the gift card. The survey was posted on Twitter, on Facebook groups for medical professionals and persons interested in wearable technologies, and via listservs related to medical and health communication. The survey was open for two and a half weeks, from August 22 to September 9, 2017. The sample yielded 81 responses in total from patients interested in or using wearable technologies. While a sample of 81 is not representative of the general population, indications from this sample help illuminate potential future trends and pathways for wearables. In light of the recent news of the aforementioned November 2017 FDA approval of Abilify MyCite, the first human-ingested digitally trackable pill connected to a wearable patch, we also conducted three additional interviews of current wearable users. We added questions to our interviews based primarily on Abilify MyCite in order to understand how patients might react to the development of such an innovation in wearable technology. These follow-up questions suited our initial quest to “understand the extent that wearables are blurring issues of privacy, choice, and the sense of who has agency in medical and health communications, as well as potential impacts to the patient and medical practitioner relationship in clini565

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cal settings.” The brief findings shed light some of the concerns wearable users might have with more invasive wearable technologies, and the results from these interviews are also discussed in the results section. Of course, limitations of the follow-up interviews include a small sample size in comparison to our survey sample size. Also, interviews with individual respondents are almost always subject to the potential of restricted responses when discussing topics of potentially sensitive nature. Additionally, while interviews help to provide a fuller understanding of how some patients conceive issues of privacy and choice, the findings are not generalizable across our initial survey sample. Together, the survey and interviews provide an initial portal to understanding how, as wearable technologies continue to rapidly grow in availability and in their dual usefulness and invasiveness to our lives, a sample of current users relate to and utilize these technologies. The survey provides an extraction of data across current wearable users from across many demographic groups, and the interviews provide some extended richness to some of the more persistent themes and questions central to our investigation. The initial findings from these combined methods propel us as researchers to examine issues of privacy and choice as they related to wearables in future studies. The findings helped confirm initial hypotheses about real patient concerns and entice us to future work in this area on a more focused level, perhaps in focus groups or larger samples of close interviews.

RESULTS In this section, we first provide the results of a survey of patients using wearable technologies. We examine use of and trust in wearables and report on the ways wearable technologies are shifting medical and health communication between patients and medical professionals in practice.

Results of “Patients Using Wearables” Survey

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Demographics A total of 81 people took our survey over our period of study. Of the 81 respondents, 79 percent of respondents identify as female. Twenty (20) percent identify as male. One percent identify as gender variant/non-conforming. A range of age groups took the survey. The highest percentage of respondents was from the 25 – 34-year-old group at 38 percent, followed by the 35 – 44-year-old group at 33 percent. Figure 1 below depicts the full range of age groups represented by these respondents. Respondents also presented with a range of highest earned academic degrees, but the largest percentage of respondents indicated an earned doctorate degree, at 48 percent, followed by a Master’s degree, at 35 percent. This range is depicted in Figure 2 below. The majority of respondents in our sample identified themselves as non-Hispanic White or Euro Americans, at 90 percent of the sample. Other respondents identified as East Asian or Asian American (3 percent), Latino of Hispanic American (1 percent) and Native American or Alaskan Natives (1 percent). Three percent of respondents indicated they would prefer not to report this information.

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Figure 1. Full range of age groups represented by respondents

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Wearable Technology Usage Appropriately 97 percent of respondents in our sample indicated they owned a health-related wearable technology. For the purpose of our survey, a wearable technology is defined as an electronic device worn on the body for activity tracking, health monitoring, and/or health management. Survey respondents presented with a range of wearable technologies, with the most common technologies the Apple Watch (12 percent), some version of the Fitbit (Charge 2 or Alta HR), combined at 11 percent, and Garmin (10 percent). Many respondents noted using iPhone apps of some kind (5 percent). Others noted more traditional forms of wearable technologies, such as an insulin pump and continuous glucose monitor (5 percent) or even a pedometer (3 percent). Figure 3 below represents a Word Cloud depiction of the range of technologies represented in our survey responses.

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Figure 2. Highest earned academic degrees

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Figure 3. Word Cloud depiction of the range of technologies represented in the survey responses

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Survey respondents in our sample presented with a range of responses when asked if they were monitoring a current health condition or potential future disease-risk with the use of a wearable technology, but 45 respondents said they were not. The most common conditions that were being tracked include heart rate (7 percent), sleep (7 percent), diabetes (6 percent), overall health (6 percent), general weight management (3 percent), blood pressure (2 percent), and obesity (2 percent). Survey respondents noted that they were monitoring a current health condition or potential future disease-risk without the use of a wearable technology as well. Six (6) percent of respondents noted they tracked blood pressure without a wearable technology. Other responses include cholesterol (4 percent), diabetes (4 percent), weight (3 percent) kidney issues (2 percent), and pregnancy attainment or progress (2 percent). Respondents generally report confidence in their wearable technology’s ability to help them better control their health or health-risk for future health issues. Sixty-eight (68) percent of our sample indicated they are either somewhat confident or very confident that wearable technologies are assisting them in these ways. Just one percent of respondents was “very skeptical” of a wearable technology’s abilities to help them control their own health. Fifteen (15) percent were somewhat skeptical. See Figure 4 for more details.

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Figure 4. How confident respondents are in wearable technology

Beyond health issues or concern for specific future health issues, respondents reported tracking a range of health-related types of information with their wearable technologies. Some of the most common responses include heart rate (35 percent), activity as it relates to exercise (30 percent), calories (21 percent), sleep patterns (10 percent), and weight (7 percent). Figure 5 below depicts the range of types of information respondents reported on tracking with wearables.

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 Technologized Talk

Figure 5. The range of types of information respondents reported on tracking with wearables

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Wearables and Relationships with Medical Professionals Now we move to the part of the survey indicating relationships with patients’ medical professionals. Many respondents noted that they are monitoring a current health condition or potential future disease-risk with the assistance of a medical professional. The most common responses include diabetes management (6 percent), high cholesterol (5 percent), and issues involving endocrinology (5 percent). Other responses were working with surgeons (4 percent), primary care physicians (2 percent), cardiologists (2 percent), or internists (2 percent) on issues not specifically identified. Of 81 respondents, 16 respondents (20 percent) noted that a medical professional of some kind has encouraged them to use a wearable technology to monitor their health. One respondent writes: “I have multiple physician family members (my father and father-in-law) who have encouraged FitBit tracking to ensure I am getting enough cardio exercise each week as a preventative health measure.” Another respondent writes: “Yes, OB strongly encourages pregnant women to get at least 30 min of activity a day. Likes that the fitbit helps me track it.” Another respondents notes: “He / she comments positively on my wearing it. Probably because I’ve worn one for years, it has never been brought up to me as something I ‘should’ be doing. It’s simply something we share in common.” Some respondents expressed concern for a lack of encouragement of personal health tracking: “They haven’t expressed an opinion thus far; they keep emphasizing that I’m young, a non-smoker, and other factors that would reduce my risk. I’m still worried.” None of the respondents noted an active discouragement of the use of wearable technologies by a medical professional. As it relates to how medical professionals and patients use wearable technologies to track health, engagement between the technologies’ use and patient/medical professional discussions also presents a range of responses. Two respondents note some skepticism and expression of wearables as “reminders” or “novelty:”

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• •

“No. I am not naive enough to believe that the watch is 100% accurate in monitoring heart rate, activity, etc. More than accuracy, the watch just offers a nice reminder to me that I need to think about these things.” “I work in a medical school and have physician family members. My clinician colleagues and relatives are skeptical and believe that the calorie tracking on the FitBit is inaccurate. We primarily discuss the FitBit as an entertainment technology, in that we can compete against friends in step competitions. To us, a FitBit is more of a novelty than a medical technology.”

Others mentioned more positive depictions of wearables in their discussions with their medical professionals, but at more basic and simplistic uses of the wearables to track health, i.e. step goals and caloric intake for basic weight management: • •

• • • • • •

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•

“I mentioned that I have a step goal and try to meet it every day when I was asked about my activity level.” “I discussed my calorie intake and running stats with a nutritionist when I met with one to discuss weight loss and running training. The nutritionist seemed to think that because I used a wearable and tracked my data that I was more aware of nutrition/exercise/weight management and already on the right path to health.” “Yes, I talked to my doctor about my activity level.” “Yes, monitoring health rate.” “Yes. I share my Google Fit reports that detail me exercise levels.” “Discussed amount of exercise being performed within a certain time frame.” “I report my average step count with my doctor at my annual physical.” “Yes, to talk about the amount of exercise I do, and calories burned, versus weight gain/loss and metabolism.” “Yes! I often use my wearable data as a rhetorical resource during clinical encounters. No healthcare provider has asked to see my data or wants to actually look at my smartwatch or iphone, but I usually say things like, ‘According to my smartwatch, I’ve only been walking 5,000 steps per day for the last few weeks compared to in December, when I walked closer to 10,000 steps. I think this quantifies some of the fatigue that I’ve been experiencing.’ Similarly, I’ll note that I’ve only been getting 5-6 hours of sleep per night due to chronic pain, and my psychiatrist may adjust my medications accordingly.”

Patients expressing distinctly clinical uses of wearables often did so with reference to communication with their medical professionals. Twelve respondents (15 percent) noted very specific clinical uses for the wearables that are or were examined by their medical professional partner(s): • • • •

“Yes, heart rate anomalies before syncopal episode.” “Yes – we go over sleep patterns and exercise habits in connection with my depression and anxiety.” “Sure. We down load (sic) the results from my meter/pump and look at patterns when I have my office visits.” “Yes, my endocrinologist downloads information from my insulin pump at each visit and we use that to tweak the settings in my pump.”

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• • • • • •

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• •

“Yes. We have discussed BP and pacemaker activity. I know my pacemaker paces the heart 97% of the time and my heart does the other 3%. My BP is low, and a constant concern, but the medications I am on are necessary for the heart function. The medications are causing the low BP.” “Yes. As mentioned before, the data is used by my endocrinologist to make treatment decisions and adjustments to insulin dosing.” “My wearable technologies a part of my treatment. I meet with a team member once a week or so.” “Yes. We compare weeks of excerizee [sic] and how that applies to HR.” “Yes, to report on average heart rate and average resting heart rate. My doctor (obgyn) weighs this slightly in comparison to in-office recorded rates.” “In this case, the orthodontic device is attached to my teeth, and I am supposed to wear the elastics and retainer that go with it 22 hours a day. We discuss this at orthodontist check ups [sic] as failure to wear it enough delays progress.” “Yes, to indicate the improvement in my resting heart rate.” “Yes. Downloaded date helps Make treatment decisions.”

As it relates to the way information presented to medical professionals from information tracked by wearable devices, responses vary, with the majority of responses noting they had not gauged a response of any kind. Others noted general neutrality in medical professional responses to use of wearable technologies. However, some respondents noted positive responses: “The doctors love it. It is more reliable than trying to tell them how things have been going. There is ‘hard’ data they can view themselves.” Another respondent notes: “She was very happy that I was augmenting my understanding of how I live.” One respondent notes the data actually helped move to a diagnosis: “Positively. Use the date to diagnose.” Here is at least one instance in which a wearable technology made a marked difference in health information for a patient. Others, however, note skepticism from medical professionals: “Overall I don’t believe my primary care physician would trust the statistics and metrics provided by my FitBit.” One respondent noted a perception that medical professionals believe wearable users are more “aware” of their health: “The medical professional seemed to think that because I was an active wearable user and tracker that I was already aware of other health issues. I think there is an assumption that most health issues are because individuals are unaware (don’t know how active they are, how many calories they take in, the nutritional value of their food, etc.) and wearable users are aware.” Most respondents from our survey noted that a wearable technology had never been in direct conflict with information provided to them by a medical professional, but wearables, for some patients, did illuminate some minor discrepancies: “Because the interfaces of some wearables calculate BMI as an indicator but do not allow women to inform the system that they are pregnant, pregnancy weight gain makes some wearables report that I am in danger of becoming overweight. My doctor says I’m right on track.” Another respondent writes: “Somewhat, in the sense that my BP is low and the monitor gives me a yellow light with cardiologist says as long as my low BP is not causing me to faint or have dangerous symptoms then it is ok.” Another respondent notes: “The 10,000-step goal that my FitBit monitors seems to contradict the advice of my physician, which is to engage in more frequent, vigorous exercise rather than walking alone. She prefers I set a time and intensity goal for working out, instead of aiming for a step count that could be more leisurely and less strenuous than what I want out of my workouts.”

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Patient Self-Diagnosis and Self-Treatment via Wearables Interestingly, many survey respondents noted that they have in fact made health-related decisions without the assistance of a medical professional stemming from information found in their wearable device. If in the typical rhetorical relationship between patients and medical professionals of the past, patient decision-making relied on information from a medical professional, this decision-making based on information from the wearable rather than a medical professional is a clear change in the rhetorical relationship between patients and their doctors. Below, we see that other aspects of this change in the rhetorical relationship are often based on feelings of control and motivation and the basis of these feelings. One respondent notes: “Yes; the FitBit more clearly helped me realized [sic] that I wasn’t sleeping enough and could stand to be more active, so I chose to become more active in terms of walking and to make sleep a priority.” Similarly, another respondent notes they fixed a “Sleeping problem” and learned “what to do about it” from a wearable device. One respondent noted that his or her wearable prompted an understanding of sleep issues leading to the purchase of a new mattress. Some noted making diet and fitness decisions: • •

•

“Based on my Garman VivoFit data, I have tried various diets without consulting a professional, such as a low carb diet or a 16 hour (sic) fast diet.” “My FitBit suggested that I should be more fit for my age group; this caused me to start exercising more regularly. Maybe more than any other factor, FitBit’s sleep tracking has really been an eye-opener. I was getting under the recommended amount of sleep for an adult on a nightly basis. Since altering some things and using the FitBit to remind me to ‘wind down’, I’ve felt significantly more rested.” “I use the FitBit as a daily motivator to keep active. Although my doctor recommends I stay active, I’m much more likely to do so with daily FitBit reminders (step goals, etc.).” Other respondents noted making perhaps even more serious health decisions. Some examples include:

• • •

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•

“Yes, we have adjusted medications when BP was dangerously low.” “Yes, I have to make decisions about how much insulin to take every day. I regularly have to use the data I have to change the settings and insulin levels in my insulin pump without assistance from a doctor.” “Absolutely. Type 1 diabetes is largely a self-managed illness. If the continuous glucose monitor is telling me that my blood sugar is going high or low, I make adjustments to account/correct.” “Every single day. If my blood sugar is trending low and I need to walk [somewhere] I might suspend my insulin delivery for an hour so I don’t bottom out. this is one of hundreds of examples I could give you.”

When asked whether wearable technologies give respondents a perceived feeling of more control over their health, nearly half – or 40 respondents (49 percent) – indicated that they felt more in the affirmative. Only 8 respondents (10 percent) indicated they did not feel as though they have gained more control over their health. Respondents indicating a sense of being somewhat more in control noted, for example, a greater “awareness” or “level of consciousness” about health issues, but not a total sense of control. Overall, though, respondents felt wearable devices were at least somewhat beneficial (46 per573

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Figure 6. Respondents answer if wearable technologies are harmful or beneficial

cent) or very beneficial (32 percent), for a total of 88 percent, to their perceived power to monitor and/ or help control health (Figure 6). Extending the notion of perceived harm or benefit, when asked if wearable technologies have harmed or benefited patients’ discussions with medical professionals about their own health information, patients were, in many cases (55 percent) neutral, substantiating points found earlier that discussions about information tracked in wearables is not used incredibly frequently in discussions between patients and medical professionals. For this question, though, there were no negative responses; the other 45 percent of respondents believe that wearables are at least somewhat beneficial in their discussions with medical professionals.

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Figure 7. Respondents answer if wearable technologies are harmful or beneficial at tracking health

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As one respondent writes, wearables can provide a communication bridge in areas where medical expertise and training and patient experience may not otherwise initially connect: “Wearing a device shows intention to positively affect my overall health, and it does provide a segway (sic) for Dr/patient conversation about healthier living.” Again, what we note here is the inclusion of the wearable device as one that changes the rhetorical relationship between medical professionals and patients – in this case, for the positive. For others, wearable devices have “forced” honesty between patients and medical providers when, in the past, before the existence of such technologies, such a transparent, data-driven view was simply not available to medical practitioners: “I think it is great because there is no hiding and no excuses. You cannot lie because they can see how I have been managing my diabetes right there in the data. Some people may feel shamed by their doctors or whatever and not give them the full information for fear they will judge their choices, but I want to live more than I want to have pleasant doctor’s appointments so I want them to see the real data.” Others note that wearables might prompt an expression of language that medical professionals most appreciate: “Caregivers are impressed by data.” At the very least, it seems wearables, for some respondents, can be a more concrete conversation starter: • •

“It gives me information to start a conversation with my doctor.” “I think that wearable technologies can spark a conversation about how best to measure and track healthy choices with my physician, whether or not I choose to do that via FitBit or through my own tabulation.”

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RESULTS OF EXTENDED INTERVIEWS After our survey closed in September of 2017, in November 2017, a groundbreaking wearable technology, Abilify “MyCite,” the first human-ingested digitally trackable pill connected to a wearable patch, was approved by the FDA for use in patients with schizophrenia, bipolar I, and some instances of depression. Given the pioneering nature of this news, we conducted three brief wearable user interviews focused on Abilify MyCite. The interview respondents were read a transcript about the MyCite technology as follows: “In November 2017, it was announced that the U.S. Food and Drug Administration (FDA) approved Abilify “MyCite,” the first human-ingested digitally trackable pill. Within the pill, a sensor records that the medication has entered the prescribing patient’s body. Abilify MyCite is for use with patients in the treatment of schizophrenia, bipolar I disorder, and, possibly, as a supplement to depression management. Once ingested, the pill communicates from the pill sensor to a wearable patch, which then transmits information to a smartphone. With this technology, patients and approved caregivers and physicians can access the medication ingestion through a web portal.” Respondents were then asked to respond openly about any perceived benefits and concerns about this technology. Respondent A stated: I can see this kind of technology being good in certain cases. For example, with elderly people...I can see it also working in cases with Alzheimer’s patients or mental health issues or anything like that. But use of something like that should always be a choice.

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Respondent B noted: I can see where a pill with a sensor would help with older people. Other than that, I would say it would have to be a choice for most people to use. It sounds like more overregulation. It could also feel too much like “Big Brother” is watching. In those ways, it could be limited in its usefulness... Respondent C stated: I think for the right circumstances, it could be a good thing, especially for people with mental illnesses… But, on the other hand, it is also a scary thought to think all that information is there for others to see about you and that they could use it in ways without your permission. I think my biggest issue is really the privacy thing. If a pill and with this data could be guaranteed private, with only the right people seeing it, then I can see it being good. But it worries me, too. While this is but a limited sample of interviews, one (albeit preliminary) theme for future exploration can be discerned from the open-ended responses: issues of privacy and control over data provided by Abilify MyCite. Two of the three respondents also noted issues of choice, and one respondent brought up questions of who gets to decide which cases were appropriate for a wearable technology this “invasive” to one’s body and potential privacy. In comparison, these interviewees were also asked about their feelings of seemingly less invasive wearables, i.e. activity tracking. All three respondents noted markedly less hesitancy with tracking data of basic activity tracking nature. [Actual question line: “Please describe your daily interactions with wearable technologies of any kind.” The lack of hesitancy about basic tracking in comparison to the concern and fear displayed about Abilify “MyCite” indicates that there may be a spectrum of wearable technologies’ invasiveness with which users are comfortable. The range of users’ comfort may also lead to either positive or negative changes in rhetorical relationships between patients and medical practitioners, depending on where on that spectrum of invasiveness a certain wearable and the data it provides falls. Once described (Respondent A: Garmin, Respondent B: Fitbit Alta, Respondent C: Fitbit), respondents were again asked respond openly about any perceived benefits and concerns about this technology. Respondent A noted: Activity trackers are a good place to start for people to see how much little bits of exercise can help them towards a long term goal. These can help people get started.

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Respondent B stated: My medical professionals knowing my activity doesn’t bother me. In fact, my nurse practitioner has asked me if I use one. She told me that she was suggesting it as a way to help keep people less sedentary. Activity trackers can be used as a reminder to self to stay moving. But it doesn’t bother me because it’s information that I would not consider harmful or too personal. Respondent C noted:

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I think wearables for activity and sleep tracking can help people accountable. For my own sleep patterns, which I tracked using a wearable, my doctor gave me suggestions based on information from the wearable. So it helped me with my sleep and getting to bed. It can be great if it’s used correctly. Activity and sleep tracking seems to fall into a somewhat more comfortable category for our interview respondents. Yet when it comes to tracking more personal, potentially more invasive information – for example, compliance and patterns with medication – where such a technology falls on the above mentioned spectrum of invasiveness versus comfort, or, at the very least, more persistent concerns arise in this discussion. When we consider that wearables are now extending into our most personal layers of life – tracking periods, fertility, sex patterns, feelings of depression and anxiety, for example – we must wonder where patients might begin to question the benefits or risks of invasiveness versus comfort going forward. Questions of choice also arise. As brought forth in our responses, who will decide who is tracked – and what ailments will qualify as needing to be tracked – as wearable technologies such as those measuring compliance (i.e. MyCite) continue to become approved and marketed to medical professionals and the public? This question helps us understand how the rhetorical relationship between patients and medical practitioners is shifting because, currently, patients seem comfortable with wearable technologies which give them more agency over their own health and information with which to engage medical practitioners. Wearable technologies measuring compliance appear to potentially lessen patient agency, giving medical practitioners more power within this rhetorical relationship and taking it away from patients. As Respondent C noted: “For wearables like MyCite, I think we’ll be able to do a lot more and track a lot more in those ways in the future. It could be a good thing. But, then again, when I think about how ingrained these could become in medical care: if doctors start to rely on or…sort of force… the use of wearables like that, who will get to decide what gets tracked on who… and when? And will there be a point where we don’t get to decide that for ourselves anymore?” This statement from Respondent C demonstrates the complexity of the relationship between the social and the technical when it comes to wearable technologies, as well as to the shifting rhetorical relationship between patients and practitioners. These are not clear-cut situations, but instead are contextually based. Concerns of this nature lead us to many takeaways for consideration in future interdisciplinary discussions of medical and health communication, sociotechnical design (particularly in issues of power and authority), user-centered professional and technical communication, accessibility, and pedagogical design.

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DISCUSSION AND PRACTITIONER TAKEAWAYS From our research, it seems that the response to the use of wearables as they relate to tracking health-related information is largely positive for patients because they provide users with more agency, more control, and more information, with which they can approach their relationship(s) with medical professionals. Users appear to understand increased agency, increased control, and increased levels of information about their own health as positive things. Based on the responses we collected, we see wearable devices as having the potential to open up transparency between patients and medical professionals, prompt conversations about health issues that may otherwise have been left undiscussed, and even help patients independently track serious health information leading to diagnoses (as referenced in many situations

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in our results section). In some outlier cases in our survey, wearables helped diagnose or, in cases of specific health issues (i.e. diabetes), provide some patients with life-saving information. We compare these findings with recent work conducted in the technology sphere; a June 2017 report from Ericsson indicates that, of 4500 survey respondents, “60 percent of its respondents believed wearables would lead to a healthier lifestyle and 62 believed they would put people in control of their own health” (Ericsson, 2017). Another 2017 survey of 854 urological patients utilizing physical activity monitors in an ambulatory urology setting found that “those willing to use physical activity monitors for medical care reported greater perceived medical benefit (86 percent), improved communication (85 percent), confidentiality (89 percent), less interference with daily activity (4 percent) and improved health (81 percent)” (Nehra et al., 2017). Patients in this study found the greatest perceived benefits of physical activity tracking as health monitoring convenience (82 percent), goal related feedback (82 percent), ease of communication (57 percent) and monitoring of post-procedure recovery (56 percent) (Nehra et. al, 2017). Each of these findings indicates a significant change in the rhetorical relationship between patients and medical practitioners based on the addition of physical activity monitors in this context, because they also indicate a significant change in the rhetorical situation that is the basis for such a relationship: patients suddenly have access to more information in a more convenient way, which thus has the potential to ease communication between the various parties in the relationship. In our study of patients, 88 percent of patients noted that wearables are beneficial to their perceived power to monitor and/or help control health, and 45 percent of patients believe that wearables are at least somewhat beneficial in their discussions with medical professionals. At the same time, wearables still face major challenges, particularly with regards to users’ trust in the technologies: in some cases, users appear to trust medical professionals more than the data they collect from their wearables, but, in other cases, users appear to become a bit more skeptical of medical professionals’ knowledge because they have gained information about their health from their wearables. Often, we see these same sorts of concerns with the “WebMD” culture – as patient access to medical knowledge grows, and thus the rhetorical relationship changes between patients and medical professional changes, complications between patients and the medical professionals trained to serve them can also increase. Additionally, with the FDA’s recent approval of more invasive wearables technologies, such as the first FDA-approved trackable pill, the Abilify MyCite, we may see more discussion about increased patient accountability and the notion of patients feeling there is “no hiding” and “no excuses” in discussions with their respective medical professionals. In many ways, this illustrates how wearables could potentially change the foundational elements of trust between patients and medical professionals: while ideally, patients would be honest with medical professionals about their health and habits and, likewise, medical professionals would be honest with patients about the implications of their health and habits, we know that in the current rhetorical relationship between these two groups, this honestly is not always present. In our study, wearable devices have at times “forced” honesty between patients and medical providers when, in the past, before the existence of such technologies, such a transparent, data-driven view was simply not available to medical practitioners. One patient notes: “I think it is great because there is no hiding and no excuses. You cannot lie because they can see how I have been managing my diabetes right there in the data. Some people may feel shamed by their doctors or whatever and not give them the full information for fear they will judge their choices, but I want to live more than I want to have pleasant doctor’s appointment so I want them to see the real data.” This speaks to the complexity

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of the rhetorical relationship between patients and medical practitioners, as well as the complexity of the relationship between the social and the technical. While we agree with this respondent that patients giving medical professionals full information about their health is likely the best option, we wish to complicate this scenario. Berg, et al. argue that we must be aware of “the socio–political nature of seemingly ‘neutral’ tools” (1998, p. 243). We would extend this awareness to medical professionals themselves. Medical professionals, like wearable technologies, cannot and should not be understand as neutral. Studies have shown that medical professionals experience implicit bias, “shaping physician behavior and producing differences in medical treatment along the lines of race, ethnicity, gender or other characteristics” (Chapman, Kaatz & Carnes, 2013). We can easily imagine scenarios in which it might be to the patients’ benefit to keep some information private from medical professionals. Imagine, for example, if a patient is LGBTQ+ and realizes their medical professional might be homophobic, transphobic, or queerphobic. In what ways might “full information” about the patient in this case potentially result in a less pleasant doctor’s appointment and even more potential for “shaming” by a medical professional? While this is an extreme example, it is important to complicate the notion that “forced honesty” is always a positive for patience. Wearable technologies are clearly changing the rhetorical relationship among patients and their medical professionals. In this scenario, trust becomes a prime point of potential change, for better or worse. Indeed, we may also see an increase of the aforementioned feeling of potential “shaming” between doctor and patient; on the one hand, wearables can increase communication lines between patients and doctors because of elevated transparency, but, on the other hand, wearables have the potential to increase feelings of anxiety for a patient if they feel it could potentially embarrass or “shame” them. Our hypothetical scenario above is a good example of this; of note, as we mentioned earlier in the piece, is the role of “trust” in the rhetorical relationship between patients and medical professionals. Furthermore, we may see an increase in discussions about privacy, authority, and choice as they relate to wearables and their increased use in medical settings. Issues related to privacy were also expressed in the Ericsson study; these findings suggest that 61 percent of respondents were “concerned about data being used without their permission” (Ericsson, 2017). If we are to re-visit and re-envision the processes through which we contribute as patients concerned with our own health, and as communicators of our own health issues and concerns in medical settings, wearables certainly have had and will continue to have an impact on our health and relationships revolved around health. Even if wearable technologies can serve to empower patients, they must also be viewed with caution. Issues of accuracy, consistency (both with patient use and with data reporting), and patient biases towards the wearable technologies should always be considered. While wearables have great potential to serve as the aforementioned “bridge” between patients and medical professionals, potentially reshaping the rhetorical relationship between the two, they likely cannot serve a consistent and reliable function until (a) greater control and regulation over the incredibly important, personal, and private information held in them is more stringently and consistently examined and moderated across platforms and patient groups, and (b) we can expect that medical professionals and patients will both use this information to the benefit of their rhetorical relationship. This, of course, is no simple task; it involves multiple stakeholders and many layers of regulation, including ensuring precise and trustworthy medical and health communication across the millions of patients using wearables, education and continuing education of medical professionals, vetting by medical professionals, and, likely, endorsement by governmental parties. It also likely involves approaching the design of such wearables with a sense for the sociotechnical design principles previously discussed. On the whole, if we are to cast a realistic scope 579

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of time upon this potential progress, we are looking at many years – if not decades – before the health information reported and tracked in wearable devices can be utilized in communication between patients and medical practitioners. In the interim, wearable devices are, as the patients surveyed in this research note, helpful points of discussion and valuable assets to self-tracking of some basic health information. We assert the following communication practitioner takeaways from our research: •

•

•

•

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•

Continued study of the ways in which people interpret and utilize health-related information gained from wearable tracking devices is warranted. Patients use these technologies to such varying degrees, as indicated in our results, that further examination on larger sample sizes would prove beneficial to understanding the ways in which patients make health decisions with said technologies. Further, such future examination of larger sample sizes should look specifically at age, sex, gender, and socioeconomic status as variables that may play into the access to and ways in which patients use wearable technologies, the trust they put in such devices, and, conversely, the access to and trust they place in medical practitioners / professionals. Medical practitioners concerned with the varying modes of health communication with patients might do well to begin making a point to ask about wearable device use. While we found strong potential uses for wearable devices in this study, we found that, for our sample, communication about data tracked in wearables to be a minimal point of discussion between patients and medical practitioners. Many patients reported that they either had not or would not consider bringing up their wearable usage with their medical professionals; others noted that while they wore such technology visibly, their medical professionals had never asked them about their use of such devices. While there is much work to be done to make this data trustworthy and consistent across patient groups, a large opportunity exists. Wearables increase practitioners’ abilities to understand their patients outside of the clinical setting and offer a potential for increased health and quicker diagnoses, as indicated by some outlier responses in our research. As the potential range and uses of wearable technologies continues to increase with developing technology, further examination into issues of privacy and choice as these relate to patients is necessary. Patient acceptance of potentially useful compliance-tracking technologies, such as the Abilify MyCite, the first FDA-approved, human-ingested digitally trackable pill connected to a wearable patch, could be delayed or even halted without proper examination and careful management of consumer hesitancies and fears about issues of “privacy,” the potential of “forced” compliance, “shaming,” and “choice” (features of a rhetorical relationship) touched upon briefly in our research. All of the above can be applied to a number of pedagogical practices, including but not limited to: training for undergraduates majoring in pre-health, pre-medicine, or other pre-professional programs; medical schools and other medical practitioner training programs; and continuing education or professional development programs for medical practitioners who have already earned certifications or completed degrees. We would encourage the designers, instructors, and administrators of such pedagogical spaces to consider how and where engagement with wearable technologies and patients’ usage of them might be incorporated into future trainings. We can safely assume that the use of these quantified self-tracking devices will only become more prevalent as time passes.

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REFERENCES Baumer, E. P., Khovanskaya, V., Adams, P., Pollak, J. P., Voida, S., & Gay, G. (2013). Designing for engaging experiences in mobile social-health support systems. IEEE Pervasive Computing, 12(3), 32–39. doi:10.1109/MPRV.2013.47 Berg, M., Langenberg, C., Berg, I., & Kwakkernaat, J. (1998). Considerations for sociotechnical design: Experiences with an electronic patient record in a clinical context. International Journal of Medical Informatics, 52(1), 243–251. doi:10.1016/S1386-5056(98)00143-9 PMID:9848421 Binkley, P. F., Frontera, W., Standaert, D. G., & Stein, J. (2003). Predicting the potential of wearable technology. IEEE Engineering in Medicine and Biology Magazine, 22(3), 23–27. doi:10.1109/ MEMB.2003.1213623 PMID:12845813 Bitzer, L. F. (1968). The rhetorical situation. Philosophy & Rhetoric, 1–14. Bonato, P. (2005). Advances in wearable technology and applications in physical medicine and rehabilitation. Journal of Neuroengineering and Rehabilitation, 2(1), 2. doi:10.1186/1743-0003-2-2 PMID:15733322 Bonato, P. (2009). Advances in wearable technology for rehabilitation. Studies in Health Technology and Informatics, 145, 145–159. PMID:19592792 Chapman, E. N., Kaatz, A., & Carnes, M. (2013). Physicians and implicit bias: How doctors may unwittingly perpetuate health care disparities. Journal of General Internal Medicine, 28(11), 1504–1510. doi:10.100711606-013-2441-1 PMID:23576243 Cherns, A. (1976). The principles of sociotechnical design. Human Relations, 29(8), 783–792. doi:10.1177/001872677602900806 Cherns, A. (1987). Principles of sociotechnical design revisited. Human Relations, 40(3), 153–161. doi:10.1177/001872678704000303 Chu, J., Floyd, R., Diep, H., Pardo, S., Goldblum, P., & Bongar, B. (2013). A tool for the culturally competent assessment of suicide: The Cultural Assessment of Risk for Suicide (CARS) Measure. Psychological Assessment, 25(2), 424–434. doi:10.1037/a0031264 PMID:23356681

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Coiera, E. (2004). Four rules for the reinvention of health care. BMJ: British Medical Journal, 328(7449), 1197–1199. doi:10.1136/bmj.328.7449.1197 PMID:15142933 Crawford, K., Lingel, J., & Karppi, T. (2015). Our metrics, ourselves: A hundred years of self-tracking from the weight scale to the wrist wearable device. European Journal of Cultural Studies, 18(4-5), 479–496. doi:10.1177/1367549415584857 Derby-Davis, M. J. (2014). Predictors of nursing faculty’s job satisfaction and intent to stay in academe. Journal of Professional Nursing, 30(1), 19–25. doi:10.1016/j.profnurs.2013.04.001 PMID:24503311 Duin, A. H., Moses, J., McGrath, M., & Tham, J. (2016). Wearable computing, wearable composing: New dimensions in composition pedagogy. Computers and Composition Online. Retrieved from http:// cconlinejournal.org/wearable/

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Emmons, K. (2007). “All on the list”: Uptake in talk about depression. In Rhetoric of Healthcare: Essays Toward a New Disciplinary Inquiry (pp. 159-80). Ericsson (2017). From healthcare to homecare: the critical role of 5G in healthcare transformation. Retrieved from https://www.ericsson.com/en/networked-society/trends-and-insights/consumerlab/ consumer-insights/reports/transforming-healthcare-homecare#methodology Gardiner, E., & Musto, R. G. (2015). The Digital Humanities: A Primer for Students and Scholars. Cambridge University Press. doi:10.1017/CBO9781139003865 Gouge, C., & Jones, J. (2016). Wearables, wearing, and the rhetorics that attend to them. Rhetoric Society Quarterly, 46(3), 199–206. doi:10.1080/02773945.2016.1171689 Grabill, J. T. (2000). Shaping local HIV/AIDS services policy through activist research: The problem of client involvement. Technical Communication Quarterly, 9(1), 29–50. doi:10.1080/10572250009364684 Hänsel, K., Wilde, N., Haddadi, H., & Alomainy, A. (2015, December). Challenges with Current Wearable Technology in Monitoring Health Data and Providing Positive Behavioral Support. In Proceedings of the 5th EAI International Conference on Wireless Mobile Communication and Healthcare (pp. 158161). ICST (Institute for Computer Sciences, Social-Informatics and Telecommunications Engineering). Hasvold, P. E., & Scholl, J. (2011). Flexibility in interaction: Sociotechnical design of an operating room scheduler. International Journal of Medical Informatics, 80(9), 631–645. doi:10.1016/j. ijmedinf.2011.06.007 PMID:21782503 Herrick, J. W. (1999). “And Then She Said” Office Stories and What They Tell Us about Gender in the Workplace. Journal of Business and Technical Communication, 13(3), 274–296. doi:10.1177/105065199901300303 Huang, H.-M. (2006). Do print and web surveys provide the same results? Computers in Human Behavior, 22(3), 334–350. doi:10.1016/j.chb.2004.09.012 Jack, J. (2016). Leviathan and the Breast Pump: Toward an Embodied Rhetoric of Wearable Technology. Rhetoric Society Quarterly, 46(3), 207–221. doi:10.1080/02773945.2016.1171691 Kessler, M. M. (2016). Wearing an Ostomy Pouch and Becoming an Ostomate: A Kairological Approach to Wearability. Rhetoric Society Quarterly, 46(3), 236–250. doi:10.1080/02773945.2016.1171693

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Nafus, D., & Sherman, J. (2014). Big data, big questions| this one does not go up to 11: The quantified self movement as an alternative big data practice. International Journal of Communication, 8, 11. Najafi, B., Horn, D., Marclay, S., Crews, R. T., Wu, S., & Wrobel, J. S. (2010). Assessing postural control and postural control strategy in diabetes patients using innovative and wearable technology. Journal of Diabetes Science and Technology, 4(4), 780–791. doi:10.1177/193229681000400403 PMID:20663438 Nehra, K., Gettman, M.T., Rivera, M.E., Agarwal, D.K., O’neil, D.A., Jenkins, S.M. Tollefson, M.K. & Viers, B.R. (2016). Patients are willing to utilize wearable devices for their care: a survey of perceptions and acceptance of wearable technology for health monitoring in a urological patient population. Urology Practice, 4. doi:10.1016/j.urpr.2016.10.002

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Park, S., & Jayaraman, S. (2003). Enhancing the quality of life through wearable technology. IEEE Engineering in Medicine and Biology Magazine, 22(3), 41–48. doi:10.1109/MEMB.2003.1213625 PMID:12845818 Patel, S., Hughes, R., Hester, T., Stein, J., Akay, M., Dy, J. G., & Bonato, P. (2010). A novel approach to monitor rehabilitation outcomes in stroke survivors using wearable technology. Proceedings of the IEEE, 98(3), 450–461. doi:10.1109/JPROC.2009.2038727 Plumb, C., & Spyridakis, J. H. (1992). Survey research in technical communication: Designing and administering questionnaires. Technical Communication (Washington), 39(4), 625–639. Schüll, N. D. (2016). Data for life: Wearable technology and the design of self-care. Biosocieties, 11(3), 317–333. doi:10.1057/biosoc.2015.47 Shantz, J. A. S., & Veillette, C. J. (2014). The application of wearable technology in surgery: ensuring the positive impact of the wearable revolution on surgical patients. Frontiers in Surgery, 1. Sherry, M., Thomas, P., & Chui, W. H. (2010). International students: A vulnerable student population. Higher Education, 60(1), 33–46. doi:10.100710734-009-9284-z Swan, M. (2009). Emerging patient-driven health care models: An examination of health social networks, consumer personalized medicine and quantified self-tracking. International Journal of Environmental Research and Public Health, 6(2), 492–525. doi:10.3390/ijerph6020492 PMID:19440396 Teston, C. (2016). Rhetoric, Precarity, and mHealth Technologies. Rhetoric Society Quarterly, 46(3), 251–268. doi:10.1080/02773945.2016.1171694 U.S. Food and Drug Administration. (2017). FDA approves pill with sensor that digitally tracks if patients have ingested their medication. [Press release]. Retrieved from https://www.fda.gov/NewsEvents/ Newsroom/PressAnnouncements/ucm584933.htm

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Vallurupalli, S., Paydak, H., Agarwal, S. K., Agrawal, M., & Assad-Kottner, C. (2013). Wearable technology to improve education and patient outcomes in a cardiology fellowship program-a feasibility study. Health and Technology, 3(4), 267–270. doi:10.100712553-013-0065-4

This research was previously published in the International Journal of Sociotechnology and Knowledge Development (IJSKD), 10(3); pages 1-26, copyright year 2018 by IGI Publishing (an imprint of IGI Global).

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APPENDIX A: PATIENT SURVEY Patients Using Wearables Survey

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This survey has been approved by the [content deleted--institution name] IRB Board. In your responses, please do not use real names. Your responses will be reported with anonymity, and your identifying information (if you leave your email) will not be tied to this data or reported in any way. You may stop the survey at any time if you become uncomfortable. 1. What is your gender? ◦◦ Male ◦◦ Female ◦◦ Transgender Female ◦◦ Transgender Male ◦◦ Gender Variant / Nonconforming ◦◦ Not Listed ◦◦ Prefer Not to Answer 2. What is your age? ◦◦ 18 – 24 ◦◦ 25 - 34 ◦◦ 35 - 44 ◦◦ 45 - 54 ◦◦ 55 - 64 ◦◦ 65 - 74 ◦◦ 75 - 84 ◦◦ 85 - 94 ◦◦ 94 or above 3. Please indicate your highest earned academic degree. ◦◦ Did not finish high school ◦◦ High school degree ◦◦ Bachelor’s degree ◦◦ Master’s degree ◦◦ Doctorate degree 4. To which racial group do you most identify? ◦◦ Non-Hispanic White or Euro American ◦◦ Asian ◦◦ Black, Afro-Caribbean, or African American ◦◦ Latino or Hispanic American ◦◦ East Asian or Asian American ◦◦ South Asian or Indian American ◦◦ Middle Eastern or Arab American ◦◦ Native American or Alaskan Native ◦◦ Prefer Not to Answer

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◦◦ Other (please specify) 5. Do you own a health-related wearable technology? For the purpose of this survey, a wearable technology is defined as an electronic device worn on the body for activity tracking, health monitoring, and/or health management. ◦◦ Yes ◦◦ No 6. If yes, what type(s) of wearable technologies do you own? *7. Are you actively monitoring a current health condition or potential future disease-risk with your wearable technology? If so, please describe. *8. Are you actively monitoring a current health condition or potential future disease-risk without the use of your wearable technology? If so, please describe. *9. Are you actively monitoring a current health condition or potential future disease-risk with the assistance of a medical professional? If so, please describe. 10. Does your medical professional (doctor, nurse, PA) encourage or discourage patient use of wearable technologies to monitor your health? *11. What type(s) of health information do you track about yourself with your wearable technology(ies)? *12. How confident are you in your wearable technology(ies)’ ability to help you better control your health and/or risk for potential future disease? ◦◦ Very skeptical ◦◦ Somewhat skeptical ◦◦ Neutral ◦◦ Somewhat confident ◦◦ Very confident *13. Have you ever discussed data from your wearable technology(ies) with a medical professional? If so, please describe the nature of this conversation. 14. If you have discussed data from a wearable technology with a medical professional, how do you feel this information was received by the medical professional? *15. Has data found in your wearable technology ever conflicted with information provided to you by a medical professional? If so, what kind of information? *16. Have you ever used information from a wearable technology to help you make a health-related decision without the assistance of a medical professional? If so, please describe. *17. Do you feel as though wearable technology(ies) give you more control over your health? *18. In your opinion, are wearable technologies harmful or beneficial to the power you have to monitor and/or help control health? ◦◦ Very harmful ◦◦ Somewhat harmful ◦◦ Neutral ◦◦ Somewhat beneficial ◦◦ Very beneficial *19. Please discuss your answer to the question above in further detail, citing your reason(s) for your choice.

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*20. In your opinion, are wearable technologies harmful or beneficial to your discussions with medical professionals about your own trackable, health-related information? ◦◦ Very harmful ◦◦ Somewhat harmful ◦◦ Neutral ◦◦ Somewhat beneficial ◦◦ Very beneficial *21. Please discuss your answer to the question above in further detail, citing your reason(s) for your choice. *22. In your opinion, are wearable technologies harmful or beneficial to your trust and relationship with medical professionals? ◦◦ Very harmful ◦◦ Somewhat harmful ◦◦ Neutral ◦◦ Somewhat beneficial ◦◦ Very beneficial *23. Please discuss your answer to the question above in further detail, citing your reason(s) for your choice. 24. Please list your email address if you are interested in being entered for the drawing for a $50 Amazon gift card. You will not be contacted or identified for any other reason with this email address. Your email address will not be recorded when the survey results are tabulated. If you are the winner of the gift card, you will be contacted before September 30, 2017.

APPENDIX B: IRB PROTOCOL, RECRUITMENT DOCUMENTS, AND APPROVAL [content deleted--IRB letter] Recruitment Email (Sample)

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Hi,

A colleague and I are working on a study to investigate the ways patients and medical practitioners use wearable technologies. If you use a wearable technology, I am hoping you might be willing to help us out by completing a 25-question survey. And if you complete the survey, you could win a $50 Amazon gift card! We are defining wearable technologies as electronic devices worn on the body for activity tracking, health monitoring, and/or health management, things like FitBit, Bellabeat LEAF, smart watches, heart-rate headphones, or similar items. Our study has been approved by the [content deleted--institution name] IRB Board. If you are not a medical professional and you use a wearable technology, and you are willing to help us with our study, please take this Patient Survey: [content deleted--survey link] Alternatively, please feel free to share this widely if you have friends, family members, or colleagues who you think might be willing to participate! You can just forward this email to anyone you think would be interested.

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If you have any questions, please feel free to send me an email! I’m more than happy to chat about any of this.

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Thank you in advance for your help!

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Chapter 32

Empowering Patients Through Digital Technologies: The Case of Mobile Health Applications Cristina Trocin https://orcid.org/0000-0002-0710-8351 Ca’ Foscari University of Venice, Italy Enrica Croda Ca’ Foscari University of Venice, Italy

ABSTRACT Mobile health initiatives aim to give patients more medical information and to empower them over their medical treatments. However, information overload and lack of digital literacy may hinder patient empowerment. This chapter investigates opportunities and challenges of patient empowerment and mobile health. The authors analyze the different definitions used in the literature to characterize patient empowerment and mobile health, discussing implications for all the care actors involved. Although the adoption rate of mobile technologies is at its infant stage and challenges still outweigh the benefits of patient empowerment, mobile health apps can foster the progress towards patient-centered care.

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INTRODUCTION The introduction and worldwide adoption of new information technologies are changing healthcare around the globe. A powerful combination of factors is driving this change. These include rapid advances in mobile technologies and applications, cloud-based computing and the exponential growth in coverage of mobile cellular networks (Dadgar & Joshi, 2018; Fox & Connolly, 2018; WHO, 2011). In recent years, especially since the advent of smartphones, a vast number of apps have been developed to address different aspects of disease management or prevention including screening, symptoms tracking, stress management, medical support, habit building and providing a routine to give patients more power and control over their healthcare path (Varshney, 2014). There were more than 325,000 DOI: 10.4018/978-1-6684-2414-8.ch032

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 Empowering Patients Through Digital Technologies

mobile health applications available in major apps stores and over 3.5 billion downloads in 2017 alone, reflecting a growth rate of 16% compared to the previous year (Research2Guidance, 2018). Researchers have attempted to understand the increasing use of mobile health applications and the way patients’ role is changing by analyzing the adoption, the use and the consequences of mobile apps in the healthcare context, reviewing scientific literature, collecting empirical evidence of specific apps or conducting randomized controlled trials (Cerezo et al., 2016; Eskildsen et al., 2017; Klecun, 2016). The pervasiveness of mobile apps in the healthcare industry suggests that their use has enriched doctor-patient communications and improved the delivery of care services (Boonstra & Broekhuis, 2010). The focus of care providers is shifting from productivity to quality of care and to positive experience for patients. This can be reached through timely health advice (Perera et al., 2011), promotion of compliance and adherence to medical treatments (Free et al., 2013), staying connected with health care provider(s), personal health management (Chatterjee et al., 2018; Dadgar & Joshi, 2018), self-care (Storni, 2014), and remote consultation (Manda & Herstad, 2015). Consequently, mobile health is composed of advanced technological tools with several benefits such as portable access to continuous streams of information, interactive functionality of the apps, monitoring patients remotely, and sending electronic alerts for disease control (Klasnja & Pratt, 2012). Although the proliferation of mobile devices is continuously increasing because of reduced costs and diminished waiting times (Reychav et al., 2018), this phenomenon has not reached maturity yet. Some patients have had a positive experience using mobile apps to manage chronic diseases, while others have had a negative feedback because they became more dependent on care professionals, thus losing some of the advantages of patient empowerment. For instance, Ghosh and colleagues (2014) demonstrated how digital integration enhanced patients’ psychological empowerment to manage a chronic disease. Patients may benefit from using mobile apps as they acquire higher awareness of their care path or they are being facilitated in accomplishing routine tasks (Prgomet et al., 2009; Noteboom & Al-Ramahi, 2018; Marcolino et al., 2018). In contrast, others face several challenges with mobile apps because of the potential information overload due to cognitive constraints (Iyengar & Lepper, 2000) and the lack of expertise or digital literacy (van den Broek & Sergeeva, 2018; Fox & Connolly, 2018). Additionally, a recent study demonstrated that patient empowerment is an elusive ideal and on the contrary patients become more dependent on care professionals (van den Broek & Sergeeva, 2018). The terms patient empowerment and mobile health have been used for several years, during which patients and medical staff have interpreted their meanings in different and sometimes contrasting ways. The absence of consensus over the definitions has led to misunderstandings among healthcare practitioners, researchers, policy makers and stakeholders alike. To make progress, it is crucial to take stock of existing knowledge. This chapter investigates opportunities and challenges of patient empowerment and mobile health and discusses implications for care actors. After presenting the research methods, the authors review definitions of patient empowerment and mobile health. For each of these dimensions of “mobile health revolution”, they examine the main benefits and challenges experienced by care actors. Finally, they conclude with the discussion of the implications of mobile health technologies for different stakeholders and directions for future research.

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METHODS The authors conducted a literature review in Information Systems (IS) and Management journals using as keywords: mobile health, mHealth, m-health, empowerment, psychological empowerment, patient empowerment, health apps, care apps, healthcare apps (Webster & Watson, 2002). The search included 8 leading IS journals: Management Information Systems Quarterly (MISQ), Information Systems Research (ISR), Journal of the Association for Information Systems (JAIS), Journal of Management Information Systems (JMIS), Information Systems Journal (ISJ), Journal of Information Technology (JIT), European Journal of Information Systems (EJIS), and Journal of Strategic Information Systems (JSIS). The Management journals included are the following: Organization Science (Org. Sci), Management Science (MS), Strategic Management Journal (Strat. Mgmt. J), Organization Studies (Org. Stud), Administrative Science Quarterly (ASQ), Journal of Management Studies (JMS), and Journal of Management (JM). Besides Management and IS, mobile health and empowerment are covered also in other disciplines such as healthcare. Therefore, the authors included healthcare journals that focused explicitly on the use of mobile technology. To have an up to date source of information, they considered conference papers as well. The search was also conducted with the main online academic data basis EBSCOhost Business, Searching Interface, Web of Science, Scopus, ACM Digital Library. After having selected the papers according to this strategy, the authors identified the definitions of patient empowerment and mobile health and proceeded to analyze the main benefits and challenges faced patients while using mobile health technology.

DISCUSSION Psychological Empowerment in Patients The spread of digital health technology brings about a fundamental change in patient information flow. Traditionally, there used to be a unidirectional flow of information from health professional to patient. The mobile health apps are now turning this communication into a dialogue, which may involve information flowing back from patient to health professional or may manifest as communication between patients themselves. Mobile health also allows patients to obtain information about their conditions that was previously accessible only by health professionals. These changes have the potential to empower patients.

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Definitions and Factors of Patient Empowerment1 The concept of empowerment is not new and has been used and investigated in different contexts and domains (Maynard et al., 2012). The interest in this topic has continued to increase in management and organizational fields because the practice of empowerment is considered a principal component of organizational effectiveness (Conger & Kanungo, 1988). This section analyzes the concept of empowerment through its historical evolution (Table 2).

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 Empowering Patients Through Digital Technologies

Three seminal studies introduced the concept of empowerment and how to operationalize it (Conger & Kanungo, 1988; Spreitzer, 1995; Thomas & Velthouse, 1990). Conger and Kanungo (1988) considered empowerment as a motivational construct because when individuals perceive themselves to have control and cope with social life events, they believe they adequately can confront with other people. They consider empowerment as an enabling process rather than a delegating one because it increases the motivation of subordinates to accomplish several tasks while highlighting personal efficacy. Thomas and Velthouse (1990) further developed this concept. They proposed a cognitive model of empowerment and operationalized it in terms of intrinsic task motivation. They referred to those experiences that individuals gather and value as positive for accomplishing specific tasks. They added three more notions more notions: impact, choice and meaning. Spreitzer (1995) built on these previous studies and coined the term psychological empowerment with the related cognitive dimensions, arguing that psychological empowerment is a multifaceted motivational construct composed of four cognitions that provide an energetic role to the employee. The concept of empowerment implies three underlying assumptions. First, psychological empowerment may take different forms in different people because the population can be differentiated in multiple ways based on age, job position, education and different characteristics of the target population (Zimmerman, 1995). Second, psychological empowerment might take different forms in different contexts across different life domains, which might require different skills, knowledge, competences in order to have an active role inside a particular organization. Third, psychological empowerment is a variable construct that might change over time because an individual initially might experience the feeling of empowerment and later disempowerment or vice versa. Moreover, they might become empowered over time. Zimmerman argues that a universal measure of empowerment for all cases is not a realistic option and not appropriate (Zimmerman, 1995). Starting from the core definitions and operationalization of the concept of psychological empowerment, multiple research projects have further developed and contextualized it according to specific case study, or field or situation. Initially, it has been studied in organizational and management domains with a focus on the ways to increase the motivation of employees to better perform their tasks and achieve better results. Later on, the term psychological empowerment spread among different settings such as education, innovation, healthcare, strategy, and crowdsourcing. Table 1 provides a summary of the most recognized definitions of patient empowerment in the healthcare industry (Bulsara et al., 2006; Deng et al., 2016; Maynard et al., 2012). Based on the analysis of the definitions, the authors identified four crucial factors that better describe the concept of patient empowerment (see Table 2). It has been defined as an enabling and transformative process of promoting and enhancing people’s ability to meet own preferences and to mobilize resources for gaining control over their healthcare to better comply and adhere to the medical treatment (McAllister et al., 2012). Some researchers have listed patients’ abilities required to possess or to develop empowerment (Permwonguswa et al., 2017). Others conceived it as a process, which involves patients, medical staff, and family members (Anderson & Funnell, 2010; Castro et al., 2016; Khuntia et al., 2017; Zimmerman, 1995); or, it has been considered an outcome to be achieved for increasing healthcare quality (Wentzer & Bygholm, 2013). The process of patient empowerment can be analyzed from the caregivers-patient’s perspective and from the patients’ viewpoint alone (Aujoulat et al., 2007). If we take into account the caregiver-patient interaction, it is considered a communicative process through a collaborative and fair relationship, where values and decisions are shared (Galanakis et al., 2016; Singh et al., 2011). Instead, if the definition is 591

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Table 1. Definitions of patient empowerment References

Definitions

Holmström & Röing (2010)

“Patient empowerment may place greater demands on the caregivers. It requires of caregivers to first develop educational skills in empowering people to make informed choices about their own health. Patient empowerment requires that caregivers learn self-management education and the teaching of problem-solving skills to patients as a complement to traditional patient education, in order to increase patients’ understanding of their situations, and consequently, enhance lasting change in the patients’ lives. Patient empowerment can be said to have an important function for people with disabilities. It can help them reject the passive ‘sick role’ status relegated on them by past medical and health professions.”

Castro, Van Regenmortel, Vanhaecht, Sermeus, & Van Hecke (2016)

“a process that enables patients to exert more influence over their individual health by increasing their capabilities to gain more control over issues that they themselves define as important.”

Deng, Khuntia & Ghosh (2013)

“The concept of psychological empowerment has been viewed from both relational and motivational perspectives. Empowerment means delegating authority to, or sharing resources with subordinates. This view treats empowerment as psychologically enabling, and enhancing an individual’s internal efficacy.”

Chiauzzi, DasMahapatra, Cochin, Bunce, Khoury, & Dave (2016)

“Key factors in patient empowerment are positive patient– provider interactions and knowledge and personal control—were identified. Levels of these empowerment factors varied across disease type.”

Segal, Silverman, & Temkin (1993)

“a process of ‘gaining control over one’s life situation influencing the organizational and societal structure in which one lives”.

Aujoulat, d’Hoore, & Deccache (2007)

“Empowerment may be defined as a complex experience of personal change. It is guided by the principle of self- determination and may be facilitated by health-care providers if they adopt a patient-centered approach of care which acknowledges the patients’ experience, priorities and fears.”

McAllister, Dunn, Payne, Davies, & Todd (2012)

“Combining this broader definition of rational decision-making with a patient empowerment approach would require clinicians to be more open minded and explicit about what outcomes patients might want, what norms and constraints the patient feels are important, the values and uncertainties the patient considers apply to themselves and the world.”

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Khuntia, Yim, Tanniru, & Lim (2017)

Patient empowerment is nothing but a capacity-building process. Empowered patients believe that they can play an active role in the management of their own health and make decisions related to it. As a result, they experience greater control over their health management process.

Funnell & Anderson (2004)

Empowerment is a patient-centered, collaborative approach tailored to match the fundamental realities of diabetes care. Patient empowerment is defined as helping patients discover and develop the inherent capacity to be responsible for one’s own life”

Funnell, Anderson, Arnold, Barr, Donnelly, M., Johnson, ... White (1991)

“We have defined the process of empowerment as the discovery and development of one’s inherent capacity to be responsible for one’s own life. People are empowered when they have sufficient knowledge to make rational decisions, sufficient control and resources to implement their decisions, and sufficient experience to evaluate the effectiveness of their decisions. Empowerment is more than an intervention or strategy to help people make behavior changes to adhere to a treatment plan. Fundamentally, patient empowerment is an outcome. Patients are empowered when they have knowledge, skills, attitudes, and self-awareness necessary to influence their own behavior and that of others in order to improve the quality of their lives”

Anderson & Funnell (2010)

“Patient empowerment is a process designed to facilitate self-directed behavior change. The empowerment approach involves facilitating and supporting patients to reflect on their experience of living with diabetes. Self-reflection occurring in a relationship characterized by psychological safety, warmth, collaboration, and respect is essential for laying the foundation for self-directed positive change in behavior, emotions, and/ or attitudes”

Zimmerman (1995)

“Empowerment is a process by which people, organizations, and communities gain mastery over issues of concern to them’ and ‘PE (Psychological Empowerment) is a feeling of control, a critical awareness of one’s environment, and an active engagement in it.”

Small, Bower, Chew-Graham, Whalley, & Protheroe (2013)

“An enabling process or outcome arising from communication with the health care professional and a mutual sharing of resources over information relating to illness, which enhances the patient’s feelings of control, selfefficacy, coping abilities and ability to achieve change over their condition. empowerment is a psychological state that occurs as a result of effective communication in health care, and which acts as a determinant of consequent participation and self-management.”

Wentzer & Bygholm (2013)

“A collaborative approach in which health professionals help patients acquire the knowledge necessary to make informed decisions and whose outcome is a patient who is responsible for the management of his/ her illness.”

Source: Authors’ elaboration

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considered only from the patients’ points of view, the process of empowerment is considered a process of change from a passive towards an active role (Table 2). Additionally, patient empowerment has been defined as a capacity-building process, in which patients play an active role in decision making and their health management process (Khuntia et al., 2017). For instance, Khuntia believes it goes beyond care management and focuses on enhancing care-provider and patient relationships. Patient empowerment2 has been conceived also as an outcome related to medical treatments, which can be reached through self-management (Funnell et al., 1991), self-efficacy (Galanakis et al., 2016), self-determination (see Table 4, Appendix; Aujoulat et al., 2007), self-esteem (Rogers et al., 1997), or active participation in decision making (Small et al., 2013). Self-efficacy is one of the most used concepts in the definitions (see Table 4, Appendix). It is considered at the individual level referring to personal levels of performance in disease and treatment behaviors. Some definitions focus on common goals such as: patients who are empowered are healthier; will take more rational decisions; will contribute to more cost-effective healthcare resources; and, will receive higher care quality services (Holmström & Röing, 2010; McAllister et al., 2012). Others refer to patients’ quality of life during medical treatments or in the follow up phase. This includes capabilities to cope with negative feelings, and personal satisfaction. Other authors focus on capabilities and actions to be taken to empower patients through education, patient-centered care, or active participation in design phase (Holmström & Röing, 2010).

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Table 2. Key factors of patient empowerment Key factors

Definitions

References

Motivation

“Empowerment means delegating authority to, or sharing resources with subordinates. This view treats empowerment as psychologically enabling, and enhancing an individual’s internal efficacy.” “When individuals perceive themselves to have control and cope with social life events, they believe they adequately can confront with other people.” “Psychological empowerment is a multifaceted motivational construct composed of four cognitions that provide an energetic role to the employee.”

(Kwon et al., 2017; Deng et al., 2013; Klasnja & Pratt, 2012; Alpay et al., 2011; Spreitzer, 1995; Thomas & Velthouse, 1990; Konger & Kanungo, 1988)

Self-efficacy

Empowered patients are defined as those individuals that are aware of their health conditions and have the capacity to make decisions about their health, and to take control over their life in order to reach their goals related to health conditions. The concept of self-efficacy is the most used and studied measure related to the concept of empowerment. This means to make more rational decisions, to decrease their dependence on health services and achieve the desired outcome.

(Reychav et al., 2019; Galanakis et al., 2016; McAllister et al., 2012)

Ownership

“The ownership domain assesses the extent to which a person feels responsible for his or her own health. […]consumers with high ownership scores were more likely to look up their health symptoms online before going to the doctor, compared to those with low ownership scores.”

(Lynch et al., 2016)

Navigation

“The navigation domain measures how skilled a person is at using the health care system. […..], those with high navigation scores were more than twice as likely to arrive at a health care visit with a prepared list of questions for the doctor as those with low navigation scores.”

(Lynch et al., 2016)

Source: Authors’ elaboration

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Benefits and Challenges of Patient Empowerment Psychological empowerment is a complex process that has been investigated at micro (patients, medical staff), meso (healthcare organizations or entities) and macro levels (healthcare industry) (Castro et al., 2016). Previous empirical studies investigated the benefits and challenges of those patients who feel empowered. Prior studies investigated the consequences of patient empowerment with relation to a specific target population, which includes mental health (Rogers et al., 1997), long term conditions in primary care (Small et al., 2013), HIV patients (Johnson et al., 2012; Webb et al., 2001; Wilson et al., 2018), patients with chronic diseases (Maunsell et al., 2014; Galanakis et al., 2016), and patients with cancer (Bulsara & Styles, 2013). The main benefits experienced by empowered patients consist of emotional empowerment, autonomy, self-efficacy and feeling connected. •

•

•

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•

Emotional Empowerment: The process of giving power to patients over their medical treatment means to give more decisional, cognitive, emotional control, and hope to improve personal quality of life (Doll & Deng, 2010; Huang & Ran, 2014; Wilson et al., 2018). This enables patients not only to better understand their care path but also to take actions and to have an impact on their own path (Anders & Cassidy, 2014; Aujoulat et al., 2007; Loukanova et al., 2007). Autonomy: Complete and updated medical information allows patients to acknowledge the areas of their life more affected by their illness (see Table 4, Appendix). Then they can autonomously determine the best and most suitable decisions and tasks to have meaningful outcomes in their life (Aujoulat et al., 2007). The medical treatment changes patients’ habits and routines, which consequently might decrease self-confidence and the ability to make decisions in an autonomous way. Mobile technologies facilitate patients’ routines and medical treatments, for managing medical prescriptions or for other administrative purposes and to give the opportunity to patients to complete tasks and procedures in an autonomous way (Holmström & Röing, 2010). Self-Efficacy: Empowered patients are defined as those individuals that are aware of their health conditions and have the capacity to make decisions about their health, and to take control over their life in order to reach their goals related to health conditions (see Table 4, Appendix). This means to make more rational decisions, to decrease their dependence on health services and achieve the desired outcome (McAllister et al., 2012). The concept of self-efficacy is the most used and studied measure related to the concept of empowerment (Reychav et al., 2019). Feeling Connected: During the medical treatment, patients might face hard times and might be in need of support not only from family members but also from external actors. This refers to medical staff while monitoring patients’ health with the help of mobile technologies but also refers to other patients with the same pathology. One antecedent of feeling empowered is to feel connected with the rest of the society, including family, friends, colleagues and other people in their same condition (Bravo et al., 2015).

The approach of patient empowerment is not entirely shared and supported by practitioners mostly because it imposes additional elements on their time and efforts since it challenges physicians’ autonomy.

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•

•

Time and Effort: Medical information is created and managed by care professionals, who can benefit from shared data if they implement it. Therefore, they are required to change the results of medical visits on the platform and send it to mobile apps. This requires a higher involvement and effort, considering the time required to create digital versions of medical data and then transmit it further (Sandlund et al., 2016; Miller et al., 2016). Higher investments are needed in terms of time and effort to learn the platforms and explain the information to patients. This might be frustrating and time consuming, especially in the initial stage of implementation. In fact, one of the key barriers to mobile technologies adoption is the creation of accounts, and legal authorization of data sharing (Dadgar & Joshi, 2018) Physicians’ Authority is Challenged: Not only does the decreased information asymmetry between patients and physicians yields more opportunities for empowerment, it also challenges the role of physician authority and expertise. Indeed, more information increases patients’ awareness regarding medical treatments, but, at the same time, patients have the opportunity to question physicians’ knowledge and suggestions. This happens especially in those situations, when patients are not able to contextualize medical information and might be willing to choose a past treatment for a new disease based on positive outcomes or vice versa.

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Implications for Care Givers and Care Receivers The patient empowerment approach involves shared decision making, which can increase existing knowledge, provide more accurate risk perceptions, make the decisions in line with patients’ preferences, reduce internal decisional conflict for patients, and diminish passive or undecided patients. It also creates the opportunity to address the problem of over-diagnosis and overtreatment. When patients know that they have several options available for the best treatment such as a screening test or diagnostic procedure, they are more willing to engage with the clinicians in the decision making process (Liberati et al., 2015). The creation of an ecosystem offering digital healthcare services focused on the collaboration and participation of healthcare professionals leveraging on their expertise, on the co-creation of ideas and on the co-design, service directly involving the end-users. The contribution of the patients represents the keystone to create useful and usable services for everyday healthcare activities and at the same time ends up with enriching the construction of the healthcare digital ecosystem. The innovativeness of mobile applications lays in the integration of different needs of all involved categories/stakeholders in an open space for dialogue, listening, co-creating and negotiating proposals for common, innovative solutions. The key concept of the mobile application is to offer a tailored service for digital health that directly and predominantly involves the patient (patient-centered-healthcareecosystem). It offers the possibility to access a dematerialized medical prescription, to manage personal medical information, monitor the process of personal continuous healthcare, be aware of the healthcare process, understand how the healthcare system works (transparency), and be responsible for the personal medical data management (patient empowerment and awareness). Generation, storage and processing of data is the lifeblood of digital disruption and represents an opportunity for many industries including healthcare, which by definition is a knowledge-intensive and information-intensive industry. Information and Communication Technologies (ICT) shape both the execution of company activities and the organization of information flows and services. More specifically, ICT allows the exploitation of different advantages such as intra and inter-organizational distribution of limited resources with a patient-centered perspective, monitoring the company’s performance, facilitat595

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ing the interactions between the many actors involved, and optimizing internal processes to offer a more efficient service of higher quality. Significant challenges remain, and many new approaches and ideas are needed to ensure potential benefits materialize within healthcare organizations. In the meanwhile, investment in this area continues (Atasoy et al., 2017).

Mobile Health Mobile applications in the healthcare sector share common goals. For example, they have the potential to increase the quality of the care services through shared medical information (Reychav et al., 2018), to increase healthcare efficiency and efficacy while increasing patients’ satisfaction (Varshney, 2014), to facilitate the care service delivery, to offer patients tailored services, and to provide more convenient access to needed health information (Rai et al., 2013). The development of mobile care apps follows a multidimensional and multidisciplinary approach that takes into consideration technical aspects as well as their effects on the final users. The goal is twofold: fostering an active engagement of the final users in the process and empowering the users while satisfying real needs as a cornerstone of the process of innovation. There is a tendency to create a medical app in response to a specific need, fostering the concept of tailored care service and creating a user-driven innovation to represent value and impactful delivery of care services. So far, mobile device projects have been implemented on a pilot basis with a collaborative and participatory approach of healthcare professionals leveraging their expertise, on the co-creation of ideas and on the co-design of service directly involving the end-users (Marcolino et al., 2018; Yaraghi et al., 2014). The pervasiveness of mobile health apps has been encouraged by policy makers, who have emphasized the fact that the patients’ voice can gain control over factors that might affect their health and lives through the use of mobile technologies (Castro et al., 2016; WHO, 2011; WHO, 2016).

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Definitions and Key Characteristics of Mobile Health Over the last two decades this term has been used in many fields from health sciences to computers and human behavior, information systems, and information management. However, to date, no standardized definition of mHealth has been established. The authors selected nineteen different definitions reported in Table 3. Some scholars have embraced a technical view. For example, Zhao and colleagues (2018) defined mobile health services as tools for “providing health services and information through the use of mobile communication technology, such as smart phones, 3G/4G mobile networks and satellite communications”. Studies adopting this view, have highlighted mobile technologies’ technical functions such as networking capabilities, convenient access to medical information, cloud-based computing systems, medical sensors, and satellite communications (Liu et al., 2018; Meng et al., 2018; Wu et al., 2007; Yen et al., 2011). Other scholars have conceptualized mobile health apps based on non-technical perspectives by focusing on their consequences and on the interactions and information exchange among different groups. Specifically these scholars have studied health promotion, prevention, chronic disease care enhancement, saved time and cost of diagnosis, enhanced therapeutic relationships, improved access to healthcare services and low cost affordable solutions (Eng et al., 2013; Hoque & Sorwar, 2017; Pung et al., 2018). Some of them have also investigated information and timely interventions, and effective communication between the care providers and receivers (Rai et al., 2013). 596

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Table 3. Definitions of mobile health References

Definitions

Liu, Guo, & Ju (2018)

“mHealth is defined as one type of healthcare service that can provide mobile device users with ubiquitous and pervasive access to medical advice and information. It changes the spectrum of healthcare services from crisis intervention to health promotion, prevention, and self-management.”

World Health Organization (2011)

“The Global Observatory for eHealth (GOe) defined mHealth or mobile health as medical and public health practice supported by mobile devices, such as mobile phones, patient monitoring devices, personal digital assistants (PDAs), and other wireless devices.”

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Reychav, Parush, McHaney, Hazan, & Moshonov (2018)

“m-Healthcare solutions are used in the remote monitoring of patients, delivering care, reducing costs, saving time, and increasing accessibility and geographical coverage of services”

Meng, Guo, Lai, & Zhao (2018)

“mHealth service can be defined as the use of mobile information and communication technologies (ICTs) endowed with the capability of managing and delivering health information timely, between end-users and health professionals to improve patient safety and the quality of healthcare”

Fox & Connolly (2018)

“the utilization of mobile technologies to realize health objectives,ealth encompasses a variety of mobile applications, wearable devices, and health record systems. Mobile health can provide additional benefits including removing geographic barriers to health information, facilitating access to customized information, and removing the stigmatization often associated with other medical devices”

Kwon, Dewan, Oh, & Kim (2017)

“mobile apps enable users to upload their records immediately after an event occurs, thereby alleviating concerns associated with inaccuracies that potentially emanate from remembering the activities that people engage in over the long-term”

Reychav, Beeri, Balapour, Raban, Sabherwal, & Azuri (2019)

“Mobile computing offers fairly cheap and accessible outlets with wide-spread functionalities that are adopted in business and healthcare. In healthcare, especially in the most recent years, mobile devices are used extensively to improve patient life quality and health. Mobile healthcare or m-Healthcare solutions are used in the remote monitoring of patients, delivering care, reducing costs, saving time, and increasing accessibility and geographical coverage of services”

Kwon, Lee, & Lee (2014)

“Through mobile personal health record (mPHR) applications, users can access their health information easily. They enable patients to get their health information whenever and wherever they are. Patients are able to record and update their health conditions such as weight, blood pressure, and blood glucose level, and keep track of such information for themselves. This information can be shared with physicians, helping them check the patient’s current conditions, give instructions that patients are supposed to follow, and provide more precise and customized care services.”

Wu, Li, & Fu (2011)

“The use of mobile healthcare is closely related to the patients’ health and life. Mobile healthcare is an emerging technology for personal use which is often used voluntarily. It involves both technological and organizational aspects on the level of individual.”

Nouri, Niakan, Kalhori, Ghazisaeedi, Marchand, & Yasini (2018)

“Mobile health can be defined as the use of wireless communication devices to support public health and clinical practice or soft wares that are incorporated into smartphones to improve health outcome, health research, and health care services.”

Lim, Xue, Yen, Chang, Chan, Tai, & Choolani (2011)

“health applications facilitate the public’s self-management of their own health by offering a rich library of health information which educate users on disease prevention, promote fitness and offer tips on wellness.”

Rai, Chen, Pye, & Baird (2013)

“Mobile health is defined as the use of mobile communication technology to aid health services delivery. mHealth could increase their control over their health care, provide more convenient access to needed health information, and ultimately improve their health care costs and quality.”

Wu, Wang, & Lin (2007)

“Mobile IT/IS applications in health care can be recognized as both emerging and enabling technologies that have been applied in several countries for emergency care or general health care.”

Sun, Wang, Guo, & Peng (2013)

“Mobile health services (MHS) can be defined as a variety of healthcare services, including health consulting, hospital registering, and location-based services delivered through mobile communications and network technologies.”

Li, Wu, Gao, & Shi (2016)

“Healthcare wearable devices includes both, fitness and medical wearable devices. There are two main kinds of healthcare wearable devices in the market, fitness and medical wearable devices. Users can monitor their health conditions such as sleep, calories burned, heart rate, and distance traveled in real time.”

continues on following page

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Table 3. Continued References

Definitions

Hoque & Sorwar (2017)

“mHealth is considered to be an easy, low cost, and affordable solution to improve access to healthcare services especially for those with shortage healthcare resources. “

Pung, Fletcher, & Gunn (2018)

“Mobile apps are emerging as tools with the potential to revolutionize the treatment of mental health conditions such as depression. Apps are advanced technological tools with multiple capabilities and have been postulated to revolutionize mental health treatment in myriad ways, such as by allowing for the affordable and accessible delivery of interventions, providing real-time diagnostic and monitoring support, enhancing therapeutic relationships, augmenting engagement with treatments, and even acting as “virtual coaches”.”

Zhao, Ni, & Zhou (2018)

“Mobile health services (MHS) have been defined as providing health services and information through the use of mobile communication technology, such as smart phones, 3G/4G mobile networks and satellite communications. Mobile health could track health condition of people, evaluate the trend of its evolution and provide timely treatment. Mobile health services can save the time and cost of diagnosis. It plays a positive role in improving the quality and the efficiency of medical resources. “

Eng & Lee (2013)

“Mobile health, referred to as mHealth, is defined as mobile computing, medical sensor and communication technologies that can enhance chronic disease care beyond the traditional out-patient physician-patient encounter. This includes applications that run on mobile phones, sensors that track vital signs, health activities and cloud-based computing systems.”

Source: Authors’ elaboration

Certain characteristics of mobile health apps are common to all the definitions reported in the Table 3. For example, most researchers argue that mobile health apps have the potential to facilitate the delivery of care services, to improve the quality of the care, to share timely medical information, to meet patients’ needs with pervasive access to medical information and to improve patient-physician’ interactions. Moreover, scholars have highlighted that shared medical information facilitates remote monitoring of patients, delivering care, reducing costs, saving time, and increasing accessibility and geographical coverage of services (Reychav et al., 2019). The uptake of mobile apps is rapidly increasing thanks to their core characteristics, which are the following: • •

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• • •

Mobility provides an access to medical information without physical and temporal constraints (Prgomet et al., 2009). Ubiquity, a consequence of mobility, provides a direct access to multiple information anytime and anywhere (Middleton et al., 2014). Connectivity allows the exchange of medical information among multiple actors not only in the healthcare system but also with the personal network of the patient like family, friends, other patients with similar diseases regardless time and location (Dadgar & Joshi, 2018). Transparency and accuracy are achieved via information storage, analysis and consultation (Dadgar & Joshi, 2018). Some information may be retrieved from previous medical visits or laboratory results thus avoiding the duplication tests (Adjerid et al., 2018). Coping with perpetual tasks increases patients’ autonomy because once the medical treatment has been selected, mobile technologies allow patients to better adhere to the medical treatment (Dadgar & Joshi, 2018).

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Benefits and Challenges of Mobile Health Recent studies have demonstrated that mobile health applications have the potential to improve the quality of the care services through shared medical information (Reychav et al., 2018), to increase healthcare efficiency and efficacy while increasing patients’ satisfaction (Varshney, 2014), to facilitate care service delivery, to offer patients tailored services and to provide more convenient access to needed health information (Rai et al., 2013; Klasnia & Pratt, 2012). Therefore, the authors analyze benefits and challenges that care actors experience using mobile health applications to accomplish daily tasks. The main benefits range from enhanced care quality, to the removal of geographic barriers, to the facilitation of access to customized information, to the remote monitoring of patients. •

•

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•

Enhancing Care Quality: Policy makers are shifting their attention about care performance from productivity to positive patients’ experience based on their preferences. The World Health Organization3 defines the quality of care as “the extent to which health care services provided to individuals and patient populations improve desired health outcomes. In order to achieve this, health care must be safe, effective, timely, efficient, equitable and people centered.” The return of desired health outcomes refers to the best available medical treatment in line with patients’ preferences and values. The underlying assumption is that the care service that meets patients’ needs and health conditions enhances the care quality. According to this approach, the focus of care organizations shifts from care professional controlled care to professional managed care, creating the concept of patient-centered care service (Varshney, 2014; Peleg et al., 2017). Removing Geographic Barriers to Health Information or Geographical Coverage of Services: Mobile health apps facilitate patient-care professional interactions which can take place from different locations (Varshney, 2014). Temporal and locational constraints can be removed as the diagnosis sent by the primary care physician to the patient can be consulted in different moments by the patient and by other physicians. This is particularly useful for routine activities (i.e. chronic disease, medical prescriptions), emergency cases and during holidays in different locations. In fact, a patient suffering from chronic disease during the holidays can get the prescribed medicine in any pharmacy around the vacation location. Moreover, in emergency cases, patients can remotely access their medical history thanks to Health Information Exchange platforms or Electronic Health Records (Peleg et al., 2017; Peleg et al., 2018). Therefore, mobile health applications have the potential to remove the time and location constraints under the condition that digital platforms and mobile technologies are implemented in all care organizations and have interoperable systems, which requires economic, time and effort investments (Trocin et al., 2018). Facilitating Access to Customized Information: Mobile health apps are considered extensions of digital care services for providing timely patient-tailored care. The access to a complete medical information may make the difference for the diagnosis of a disease, the management of chronic disease and for handling an emergency case. For example, Health Information Exchanges facilitate the sharing of medical information and their access by multiple care actors such as general and specialized physicians, nurses, and administrative staff for different purposes, based on their account characteristics (Peleg et al., 2018). Moreover, mobile technologies further facilitate access to information which can be updated and customized based on care path and the reaction of the patient to the specific medical treatment (Reychav et al., 2018).

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•

•

Facilitating Decision Making: One of the major goals of mHealth is to facilitate decision making (Nouri et al., 2018). Access to recent medical information can improve the quality of decisions and decrease duplicated tests, which leads to efficiency improvements (Ayabakan et al., 2017). Mobile systems can reduce task completion time significantly. Healthcare professionals consider multiple sources of information before making a diagnosis. These include symptoms, medical history, lab results and tests (Peleg et al., 2017). This information is shared with the patient and the decision-making process moves forward in collaboration with the patient. Multiple care actors are involved in the decision-making process, thus mobile technologies facilitate processing and updating pertinent medical information. This is particularly useful for patients simultaneously affected by multimorbidity, which can be facilitated by mobile health technology (Peleg et al., 2018). Remote Monitoring of Patients: Mobile health applications provide opportunities to deliver care services beyond the physicians’ offices and hospital setting thus reshaping the boundaries of care organizations and care services (Singh et al., 2011). For instance, in the past, patients were released from a hospital during working days and the medicine prescribed during traditional working hours. Nowadays, patients can be released and buy the necessary medicine without temporal constraints. In case of necessity, physicians can prescribe additional medicine through the mobile app and patients can get them from pharmacies. For chronic diseases, patients can self-monitor their health status with the mobile apps and their physicians can check them through the apps (Reychav et al., 2018).

Example of apps that have been used for the remote monitoring of patients are personal weight management apps. Kwon and colleagues (2017) studied the efficacy of such an app. They followed a Markov modeling approach to capture the intrinsic motivation, or state of self-regulation, of individuals engaged in losing weight. They demonstrated that use of the mobile app is more effective than the PC to influence the behavior of the patients. An intensive use of the mobile application increases the probability of losing weight but after a threshold of 80% of the time engaged in this activity. Beyond the aforementioned benefits, mobile health applications also raise challenges that might inhibit their adoption. The major challenges arise from privacy concerns, digital divide and digital health literacy.

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•

Privacy Concerns: The act of sharing medical information among multiple care actors on digital platforms and mobile apps requires legal authorization from patients, which involves a sequence of steps and might be considered a barrier to adopt mobile technologies. Account creation, collection of medical information from previous visits and later update requires higher involvement and effort from all care actors (Sandlund et al., 2016). Moreover, legislation on the ownership of medical data and on the extent to which it can be shared is not clearly defined. The boundaries of dealing with medical information on digital platforms and on mobile technologies are blurred, thus patients might not feel protected enough and might not want to use these tools. Health data privacy concerns are considered barriers to mHealth adoption (Fox & Connolly, 2018, McKinsey, 2013). For example, reminders on patients’ mobile devices help patients to do regularly specific tasks and improve medical adherence. They have the potential to increase motivation and the probability of being effective during the care path (Klasnja and Pratt, 2012). In case someone can see the recipients’ phone, patients need a privacy-preserving also in the reminder option of mobile

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•

apps. Otherwise, they will not use them and the potential for increased medical adherence will not be realized (Jean et al., 2018; Wu et al., 2007). Digital Divide: The pervasiveness of mobile health apps facilitates access to medical information but also leads to a digital divide (Fox and Connolly, 2018; Kenny and Connolly, 2017). The digital divide is stronger along the age dimension. Older patients are those who could benefit from mobile technologies for chronic diseases such as diabetes, which increase with age. However, research shows that, rather than using apps to manage chronic health conditions, they prefer to use apps for fitness and dieting. They are concerned about privacy and lack trust and do not want to disclose personal data. Recently, some scholars found that older patients tend to avoid mobile health apps (Fox & Connolly, 2018; Srivastava et al., 2015).

The digital divide arises when some needs are ignored or not satisfied. As a consequence, some patients remain excluded from the potential advantages of mobile health (Kenny & Connolly, 2017). •

Digital and Health Literacy: Platforms and mobile apps collect and generate an increasing amount of medical information. On one side, this enriches patients’ medical history and allows a more accurate diagnosis (Bravo et al., 2015). On the other side, this might create confusion for patients, who might lack digital skills and health literacy. Patients might not possess knowledge and medical expertise to contextualize received information and make sense of it (van den Broek & Sergeeva, 2018). Moreover, some patients may not have the skills needed to use digital platforms or mobile apps, no matter how intuitive they are (Alpay et al., 2011).

If the goal of policy makers is to increase mhealth adoption rates, digital and health literacy are big challenges.

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Implications for Care Givers and Care Receivers Mobile health apps facilitate the sharing of information for decision making and the responsibilities of selected medical treatments. For some care paths, patients’ preferences are less taken into consideration because there is one treatment that is clearly superior. For instance, appendicitis requires an immediate surgery, and meningitis requires specific antibiotics (Reychav et al., 2018). However, most of the medical decisions entail different combinations of possible therapeutic choices. This leads to higher involvement of the patient thus adding value to the treatment because it is more consistent with their preferences and values (Sandlund et al., 2016; Miller et al., 2016). In determining the care path, multiple actors such as clinicians, patients and/or their family and other clinical staff are all engaged. There are several implications for care givers and receivers because such mobile technologies require higher involvement (Miller et al., 2016). The act of sharing information starts with the clinician, who explains the disease and treatment options available, highlighting benefits and risks. In the same way, patients share their beliefs and values with the medical staff and with the help of the clinician, they better understand their preferences for a specific treatment. In this process, not only the information is shared but also the responsibilities linked to the selected care path while empowering the engaged actors. Beyond the aims of improving the reach of healthcare, the decision-making process and management of chronic diseases, the increasing use of mobile applications is witnessing a shift in care service delivery that ranges from care professionals-controlled to care professionals-managed (Varshney, 2014). 601

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Contrary to common wisdom, the use of mobile applications is not limited only to the consultation of personal medical information but also includes a plethora of other care services such as disease prevention, mobile decision making, emergency intervention, monitoring the care path, healthcare data access, and mobile telemedicine just to mention the main services (Viswanathan et al., 2017).

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CONCLUSION AND FUTURE WORK This chapter has reviewed the definitions of patient empowerment and mobile health, discussing their main benefits and challenges. In this sense, it can provide common ground on which the academic community and stakeholders can build. There is still little understanding about how mobile health apps empower patients and about the characteristics of those patients who are empowered. Since the concept of empowerment varies across settings, context and times, longitudinal studies should be conducted to assess the extent of the level of empowerment in different time frames and to understand the key characteristics that affect feelings of empowerment. In particular, little is known about the technological features that influence this feeling. Research should also be conducted on the association between mobile apps and Electronic Healthcare Records (EHR) or Health Information Exchange (HIE) platforms since apps’ performance depends on the quality of the information provided. Actual and granular information from the mobile apps logins or patient behavior within the apps should be collected in related questionnaire data or semi-structured interviews. Mobile health applications are not expected to reduce all care costs, but they provide several benefits that facilitate care service delivery from multiple perspectives. They have the ability to extend the reach of the care services, improve decision making, help prevent and manage chronic diseases and ensure faster emergency care (WHO, 2016; Varshney, 2014, Dadgar, & Joshi, 2018). Care organizations have made significant investments to develop and deploy mobile applications and in the process, have become closer to the users’ needs. In this context, the apps have played the role of mediators between the information made available on web sites and the information users are demanding (Baird et al., 2018; Fox & Connolly, 2018). This chapter has implications for healthcare providers, policy makers and technology developers. Mobile technologies can support healthcare providers to better serve their patients by providing home care assistance and personnel training to reduce the need for hospitalization. Hospitals and post-acute care providers can enhance patients’ capabilities for off-site monitoring and self-management. Regulations have yet to fully address the new challenges introduced by mHealth. Policy makers deal with fragmented and complex regulatory environments. The authors believe that guarantying privacy and security in mHealth should have top priority. Another important issue is the communication among multiple care actors. Technology developers have led the way in mHealth innovation, specifically targeting individuals with health and wellness apps. However, the ultimate value of the apps themselves depends on interoperability and the connection with existing Electronic Health Records. It is therefore crucial that developers focus on these issues (Deloitte, 2017). To conclude, mobile health could radically change the way healthcare is viewed, managed and delivered. This chapter has focused on two dimensions of the phenomenon that are fundamentally linked: the use of patient empowerment and mHealth technology. The success of the “mobile health revolution” will depend on the extent to which the use of mHealth products and services lead to better health outcomes 602

Research Anthology on Improving Health Literacy Through Patient Communication and Mass Media, edited by Association, Information Resources Management, IGI Global, 2021. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/nyulibrary-ebooks/detail.action?docID=6686709. Created from nyulibrary-ebooks on 2021-09-02 06:30:41.

 Empowering Patients Through Digital Technologies

at lower costs for the population. To this end, a coordinated collective effort by all stakeholders on promoting digital health education and engagement and protecting data privacy and security of patients’ information is becoming more and more urgent (WHO, 2016).

ACKNOWLEDGMENT The authors are grateful to Giovanni Vaia for encouraging them to work on the topic and for helpful comments. They also thank the anonymous reviewers for constructive feedback.

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KEY TERMS AND DEFINITIONS Digital Health: Digital health refers to the act of providing care services through the use of digital platforms such as Electronic Healthcare Records (EHR), Health Information Exchanges (HIE) and mobile devices to allow patients to self-manage their care path. Digital Literacy: Digital literacy refers to the knowledge and capabilities of all care actors with a specific focus on patients to use digital tools, platforms and devices for self-managing their care path.

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Emotional Empowerment: “The process of giving power to patients over their medical treatment means to give more decisional, cognitive, emotional control, and hope to improve personal quality of life” (i.e. Doll & Deng, 2010; Huang & Ran, 2014; Wilson et al., 2018). Empowerment: “Empowerment is a process by which people, organizations, and communities gain mastery over issues of concern to them” (i.e. Zimmerman, 1995). Health Literacy: Health literacy refers to the knowledge and capabilities of patients to accomplish specific tasks to improve personal health status according to the indications of the personal physician. Mobile Application: The key concept of the mobile application is to offer a tailored service for digital health that directly and predominantly involves the patient (patient-centered-healthcare-ecosystem). Mobile Health: “Mobile health is defined as medical and public health practice supported by mobile devices, such as mobile phones, patient monitoring devices, personal digital assistants (PDAs), and other wireless devices” (i.e. WHO, 2016). Patient Empowerment: “Patient empowerment is a process designed to facilitate self-directed behavior change. The empowerment approach involves facilitating and supporting patients to reflect on their experience of living with diabetes.” Psychological Empowerment: “Psychological Empowerment is a feeling of control, a critical awareness of one’s environment, and an active engagement in it” (i.e. Spreitzer, 1995).

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ENDNOTES 1



2



3



It is important to notice that the concept of patient empowerment is similar, but it is not interchangeable with the concept of patient engagement. Empowerment represents the process by which patients gain control over their care path and feel that they can adequately cope with events and situations. The feel of empowerment leads the patient to better accomplish the required tasks. Engagement is the act of health providers and patients working together to contribute to improved health conditions. This includes better education, better motivation, creating a better healthcare experience, and driving better and shared decision-making (Peleg et al., 2018). For examples of successful implementation of these concepts and key factors of patient empowerment see Klasnja and Pratt (2012); Wiljer et al (2008); Reychav et al (2019). The definition can be retrieved from the following link: https://www.who.int/maternal_child_adolescent/topics/quality-of-care/definition/en/

This research was previously published in Impacts of Information Technology on Patient Care and Empowerment; pages 34-57, copyright year 2020 by Medical Information Science Reference (an imprint of IGI Global).

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Empowering Patients Through Digital Technologies

APPENDIX Table 4. Self-determination, autonomy and self-efficacy definitions Terminology

Definition

References

Self-determination

A patients’ sense of having choice in initiating and regulating tasks and processes

(Aujoulat et al., 2007; Doll & Deng, 2010)

Autonomy

The degree of choice patients have in using mobile technology for their healthcare conditions

(Aujoulat et al., 2007; Holmström & Röing, 2010; Dadgar & Joshi, 2018)

Self-efficacy

A patients’ belief in his/her ability to use the mobile health technology for own healthcare path

(McAllister et al., 2012; Small et al., 2013; Galanakis et al., 2016; Reychav et al., 2019)

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Source: Authors’ elaboration

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Chapter 33

Accessibility for Everyone in Health Communication Mobile Application Usage ihsan Eken https://orcid.org/0000-0002-0401-8545 Istanbul Medipol University, Turkey Basak Gezmen Istanbul Medipol University, Turkey

ABSTRACT With the development of new communication technologies and the change and transformation of mobile applications, communication styles also acquire a different dimension. Currently, individuals can access information about many health-related issues easily and quickly. Mobile applications also provide support to individuals in this area anywhere at any time. However, awareness about mobile applications and their availability is important at this point. While the transformation in the technological field makes life easier for users, not everyone (young, old, disabled, etc.) enjoys the advantages equally. In this study, user-based usability testing will be carried out on the axis of E-nabız application with female users above 65 years selected according to certain criteria. The E-nabız application is a platform for all citizens registered to the E-devlet system to access health information. In this context, besides pointing out the accessibility problems of the application, possible solutions will also be offered.

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INTRODUCTION Communication is a concept which has maintained its importance continuously from past to present. In every aspect of our lives, we are intertwined with the concept of communication. It is not possible for us to exist without communicating in our both daily lives and corporate lives. The subject of health always comes up so that individuals can adapt themselves to their environments, maintain a good life and have control over their lives. Topics such as health services, health communication, health literacy DOI: 10.4018/978-1-6684-2414-8.ch033

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 Accessibility for Everyone in Health Communication Mobile Application Usage

etc. are among the fields which are often discussed and studied today. It is very important to access information as a requirement of the information society, to exist in social life by using the devices created by information technologies and to ensure its continuity. Nowadays, with the widespread use of the Internet and mobile phones, individuals are provided with facilities for many issues. McLuhan’s argument “technology is an extension of the human being” is constantly reciprocated in our living space. Now, individuals maintain a life together with their smart phones at every moment of the day. Technology has become an indispensable element of individual life. Without smartphones, individuals feel isolated, lonely and secluded. They also carry out many life practices via smart phones. As in all the fields, the field of health continues to provide services by integrating itself with technology. Now, individuals carry out most of the health-related services, one of the most important elements of their lives, on the Internet. For example, for any date and hour, they can make an appointment online from any institution, access information about institutions in the field of health, also obtain information about prescription data, past analysis results, family medicine information etc. within the scope of person-specific private health information. Furthermore, many health-related mobile applications provide convenience to individuals. One of the most frequently used mobile applications in the recent period, E-nabız application is a platform where there are many links and sharing areas from reports containing all the health information of the people to prescription and medicine sections. In the study, regarding the E-nabız application, the user-based usability test was applied to female users above 65 years of age, who were selected according to certain criteria, the situation will be assessed in terms of the accessibility issues of the application and suggestions will be proposed.

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IMPORTANCE OF THE CONCEPT OF HEALTH IN COMMUNICATION PROCESS AND HEALTH COMMUNICATION The concept of health, which may vary from society to society, from culture to culture, has come out of its static structure in the past, and today, it is dynamic and committed to the process. In the World Health Organization’s definition of health, the concept of health is expressed not only as not being sick and disabled, but also as being comfortable and fine both physically and mentally and socially (Okay, A-2009, s. 13). The availability of all the biological health, social health and psychological health, which are known as the three basic components of health, in individuals is also used in the definitions of concept of health. The integrity of mental, physical and social health is important for the individual. Human being, which is physically an organism, is approached psychologically with his individuality and personality traits, attitudes and behaviors, and socially with his roles and interactions in the society as a group member. Successful holistic functioning of each of the elements which are possessed refers to the status of being healthy and functional impairment in any one of them indicates a disease. At this point, the ultimate duty of health services is to try to increase all these elements and to make the necessary effort in protecting and improving the individual health (Yakut, 2008, p. 23-24). Instead of the word “communication”, which was transferred from French to our language, the expression “informing each other” was often used in the past. Nowadays, communication can be defined as a comprehensive message exchange which includes the phenomenon of informing each other in general. However, as can be understood from the state of belonging to many people or objects within the meaning of communication, not only a simple message exchange, but an environment of social interaction is expressed. Here, the concepts of exchange and sharing are also important (Zıllıoğlu, 2003, p. 3). 613

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 Accessibility for Everyone in Health Communication Mobile Application Usage

The fact that the concept of communication is used in different areas leads to separate implications for its meaning. Communication, which emerged as a necessity in the process of existence of humanity, was used in order to meet and satisfy the needs with various primitive methods in primitive periods. The images drawn on the walls of the caves and the use of smoke with the fires burned can be stated as examples for the ways of communication and informing each other (Aziz, 2012, p. 25). Initial investigations in the field of communication, which is said to have begun with Plato’s early works, show the beginnings of general thoughts about communication and its effects. It is supposed that these thoughts paved the way for communication theories (Bourse & Yücel, 2012, p. 35). Technological, social, economic and political developments played a major role in the changes and transformations in the history of communication. The researches and theories about communication which entered the field of social sciences as a product of a certain period are shaped according to the important events and conditions in their periods. The reason why the issue of communication, which started to be on the agenda in the first periods of the 20th century, was emphasized in these periods was the political events involving great masses of people (Tüfekçioğlu, 1997, pp. 38-39). Communication, which is a phenomenon that constantly interacts with nature like all living beings, is transformed and shaped according to the continuation of human existence, is also in connection with culture as long as nature is concerned. (Oskay, 1992, p. 7). Generally defined as the process of transferring information, thoughts and behaviors, communication (İlal, 1997, p. 9) is a mutual message exchange. It is a loop with no beginning and no end where sent messages can be received and interpreted at the same time and an inference can be made. Communication is a process that connects people to each other and enable them to live in a balanced and harmonious way. In order to exist in society, human beings have to communicate with each other. Human beings, who are constantly in communication throughout the process from birth to the moment of death, transfers many messages, verbal or non-verbal, to the other party. In this context, experiences, thoughts, feelings and shares are provided through the communication tool (Mısırlı, 2007, pp. 1-2). Everyone can communicate. However, the important issue here is how and in which direction the correct communication should be established. Today, many institutions are organizing educational seminars, courses and programs on the subject due to the increasing importance of this matter. Trainers, who are experts in communication, explain the importance of communication in all areas of our life practices and try to provide the methods of establishing correct and effective communication in our daily and corporate lives in such programs. It is obvious that a life without communication cannot be imagined and an effective communication without corporate success cannot be achieved. The essential elements of communication consist of the transmitter receiver channel. In addition, it can be checked whether communication is achieved successfully through feedback, another element. These elements need to be available for the achievement of communication, but in some cases, the phenomenon of communication may not occur despite the presence of these elements. This is explained by the concept of lack of communication or noise. During the communication process, when there are non-overlapping areas of perception on both sides, lack of communication emerges. At this point, the ambiguity needs to be settled. (Aziz, 2012, pp. 36-37) Like individual communication, which is a sub-system of communication, health communication is also a sub-system and gaining importance increasingly. Health is among the most important issues of our time and efforts are made to make progress in this field continuously. At this point, the issue of health communication is one of the concepts that we frequently hear about and it remains on the agenda in the studies within this field. Rogers, who defines health communication as any kind of communication that 614

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 Accessibility for Everyone in Health Communication Mobile Application Usage

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includes health, primarily underlines the necessity of recognition of health services in these definitions. In addition, health communication is considered as a fundamental process in terms of ensuring and transferring right information flow, creating attitude changes related to health and developing policies that help with the adoption of healthy lifestyles. (Tabak, 2006, p. 29). The right to health is guaranteed by the constitutions of the states as a concept that is directly related to the right to life of each individual. A social state has to create economic and social conditions for its citizens to live in a sufficiently healthy, safe and clean environment and to secure the rights of its citizens with legal guarantee (Uğurlu, 2018, p. 15). Scientific and technological developments are progressing in the field of health, and therefore, developments in health communication continue at the same pace. (Özkan, 2011, p. 21). In a modern society, health dynamics can be discussed under 6 main headings. These are the increase in life expectations, globalization and resulting new health risks, state expenditures on the field of health, stunning developments in the private health market, increasing sensitivity and importance for health, orientation of the health spectrum towards chronic diseases and prevention of some of these today (Okay, B-2014, pp. 3-4). Patient right, which is a complement of the right to health, one of the most fundamental rights of the individual, and started to be heard of after 1980s, is secured internationally through many agreements and declarations. In this sense, every individual has the right to access the health service, have medical treatment and make use of health services as the subjects of the right. Providing activities, trainings and counseling for the health development is also included in this scope (Yüksel et al., 2014, pp. 44-45). The concept of health development is a process aiming at the individuals’ control over their health and development on the basis of public health and preventive medicine. The process also provides organizational and economic environmental support including health education. (Yüksel et al., 2014, p. 48) The non-state institutions aiming at social utility should also target sharing the same responsibility in the activities for health development. While national health programs, developing health campaigns and public health plans are at the mass communication level of health communication, communication developing within the corporate culture is ensured in the organizational health communication. Interpersonal communication involves the interaction of employees with other employees and service receivers. Progress is made with developments and innovation in many fields such as health psychology, health sociology, behavioral medicine etc. (Tabak, 2006, p. 30). In a wide definition, health communication includes the issues such as the determination of the communication methods in the creation of awareness for individuals regarding health and any field-related matter and providing the necessary information flow, establishment and legitimization of health consciousness and health literacy, creation of consciousness about the right to health and to live in a healthy environment etc. (Yüksel et al., 2014, p. 51). At this point, the main task of the media must be to give place to publications for raising awareness on health and developing the matter. In health publications, it is very important to keep the magazine aspect in the background and to transfer the right information within the information flow to the public.

USABILITY AND USER DIVERSITY Usability is the ability of the users in the target group to be expressed in terms of the measurement of productivity, effectiveness, and satisfaction they exhibit during the performance of tasks in a given environment through the related tool (Çağıltay, 2011). User ideas have become very important nowadays and usability testing types and methods have emerged to learn users’ opinions. The usability test is to examine whether the users meet their needs and expectations on real products, and to evaluate the usability of the 615

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 Accessibility for Everyone in Health Communication Mobile Application Usage

product in terms of effectiveness, productivity and satisfaction, except for people’s subjective opinions. Today, companies create their designs according to these tests and present them to users (Eken, 2017). Usability tests are divided into two groups according to the desired purpose, in other words, according to the test types and the source of the desired data or testing methods (Tübitak & Kalkınma Bakanlığı, p. 6). Due to the subject of the study, assessment will made over the user (experimental) based usability test in this section. User (Experimental) Based: It aims to test the real interfaces by the real user group in specific laboratory or real environments and to analyze the data to be obtained from the test result. Certain criteria are created for usability tests, and the movements of the users are recorded by taking note of their speeches. This recorded information is used directly to improve the application or to eliminate its shortcomings. Once this application is made, a more usable application becomes available for everyone. Different methods can be used for usability tests performed by real users. Body movements and behaviors of users can be recorded while using the application, and users may be asked to transfer them to usability experts through thinking aloud. In this way, the obtained video and audio recordings can be evaluated with previous test data (Çağıltay, 2011, p. 111). These user-based tests are the tests which present the most realistic data and are mostly used. On the other hand, these tests need to be elaborated very well and most of the mistakes are made in them. They are also very costly tests. The user-based method has advantages and disadvantages (Çağıltay, 2011, pp. 126-127). Advantages of the user-based approach: • • •

Real usage data is obtained. The most important problems can be revealed. It can be used for both formative and summative tests. Disadvantages of the user-based approach:

•

•

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•

•

It can be expensive and laborious, as each user needs to be assessed individually, tested individually, and the results to be reviewed and reported. In this respect, it is both very time-consuming and some expensive sources (such as the usability laboratory, devices for recording behaviors, eye movement monitoring device, etc.) may be needed due to the requirements of the test. It requires patience, as mentioned in the previous heading, it is necessary to work with each user individually. Tests should only be performed with the appropriate target group (such as the visually impaired, the elderly or children) and reaching appropriate subjects can be problematic. It should be planned very well. If useful data collection is required in the results of the tests, the entire usability test must be well designed and implemented from the beginning. It is extremely important to assign the most appropriate tasks to the most appropriate people and to present them in a specific scenario. The data obtained may not provide sufficient content for the redesign of the interface tested. For example, users may say they are not satisfied with the software, but information about how the software should be may not be obtained by testing. As a result, the new design needs to be retested.

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 Accessibility for Everyone in Health Communication Mobile Application Usage

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User Diversity Regardless of our social class, ethnicity, past or physical disabilities, everyone should have equal access to a service or product from which they can benefit. Access is directly related to human rights. (Rızvanoğlu, 2009, p. 21). According to Shneiderman (1999, p. 86), it is associated with the communication law including telephone, telegraph and radio services entering into force in the United States in 1934. This law was regulated “to provide the necessary facilities for reasonable costs” and entered into force in order “to prevent discrimination based on race, color, religion, national origin and gender” especially in rural areas. This law has been adapted to computer technologies over time and has become more important today thanks to mobile communication. Accessibility must be on equal terms for everyone. However, no user is the same; users may have diversities and differences depending on these diversities. The first users that come to mind when we use the concept of user diversity are generally the specific target groups such as people with disabilities, different sexes, languages and cultures. However, almost all users can find a wide variety of environments and situations that affect their needs. According to Rızvanoğlu (2009, p. 47), even on a simple day, whether on the road, at home or in the office, any person will need different interfaces, as long as on the same device, against the varying demands and constraints of different environments or activities, in a process where they drive, travel, walk, run or do sports. Moreover, even within a single environment and activity, people can change their preferences. Therefore, diversity is not a feature to be attributed just to users. In addition to users, it can also be attributed to the environments and situations to which users may be exposed, and even to the limitations resulting from them. What is important is the quantity of the needs associated with the different user needs and the situation that can develop in parallel to these needs and the partnership of the solutions for both. For this reason, it is necessary to consider user diversity from a wider perspective. User diversity is one of the most important problems to overcome, where it is also challenging to expand the participation. User diversity includes users with characteristics such as different skills, knowledge, age, gender, disability, preventing conditions (mobility, sunlight, noise), literacy, culture, income and so on (Shneiderman, 1999, p. 89). Due to the subject of the study, in this section, user diversity will be evaluated over the elderly and female users. Considering personality differences in terms of user diversity, the gender factor can be regarded as one of the important variables. In the web design and mobile application interface studies, the genderbased differences in preference and usage between male and female users have constituted the subject of a very limited number of academic researches. From the past to the present, it is seen that applications regarding gender differences at the level of usage experience first appeared in the computer and video game design (Rızvanoğlu, 2009). However, it was determined that there were concrete differences between men and women in terms of access to computer technologies. In particular, women’s socioeconomic status draws attention as a fundamental justification for preventing their access to computer technology. In developing countries and Turkey, the factors such as the conservative culture, inequality of opportunity in education and a low-income level, which manifest themselves in rural areas, negatively affect the access of women to information technology (Törenli, 2005) Considering personality differences in terms of user diversity, the age factor can be regarded as one of the important variables. Due to the widespread use of smart phones and the Internet among users over 65 years of age, the usage rate of computer technologies has increased. However, users over the age of 65 are still considered as limited-level users compared to users in younger age groups. According to the research on computer and the Internet usage conducted by Turkey Statistical Institute (TSI) according to 617

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 Accessibility for Everyone in Health Communication Mobile Application Usage

age groups, differences are observed between women and men in terms of the rates of using computer and the Internet. Especially when Table 1 is examined according to certain age groups, it is found that the computer and Internet usage rates of female users between the ages of 65-74 are at the lowest level. One of the most important reasons for users who are considered to be older than 65 years of age, that is, to be elderly is the usage of the computer technology for health and care purposes. Computer technologies and the Internet are thought to contribute positively especially to the living standards of the elderly. Today, with the development of mobile technologies, significant increases have been experienced in mobile applications. In particular, the information transmitted by healthcare professionals through artificial intelligence reaches users and makes their lives easier. Elderly users can easily access information such as prescriptions, medications, treatment information and controls through the mobile applications at hand. Table 1. Computer and internet usage by age groups 2009 PC

25-34

45-54

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65-74

K

34,5

2010 41,6

2011 46,7

2012 48,1

2013 49,1

2014 55,3

2015 54,5

2016 50,8

2017 49,9

2018 53,6

NET

K

32,9

40,2

44,9

47,2

48,4

57,4

62

70,7

78,7

85,6

PC

E

58,6

62,4

67,5

70

70

71,3

70,8

67,7

67,9

69,8

NET

E

57,2

60,9

65,4

69,6

69,1

76,8

81,3

86,7

92,6

94,5

PC

T

46,6

52

57,1

59,1

59,6

63,3

62,7

59,3

59

61,7

NET

T

45,1

50,ü6

55,1

58,5

58,8

67,1

71,7

78,8

85,7

90,1

PC

K

11,6

12,7

13,9

17

15,9

20,6

22,8

22,7

22,6

23,2

NET

K

10,5

12,9

13,2

16,2

15,1

20

24,2

30,6

40,9

51,1

PC

E

28,9

33,6

34,3

36,3

36,2

40,5

41,2

39,7

41,1

42

NET

E

26,7

31,9

32,1

34,8

34,7

40,7

43,7

51,8

62,5

71,8

PC

T

20,2

23,2

24,1

26,7

26,1

30,6

32

31,2

31,9

32,6

NET

T

18,6

22,4

22,7

25,5

24,9

30,4

34

41,3

51,7

61,5

PC

K

1,4

1,6

1,4

1,3

1,7

1,8

2,8

4,3

4,2

5,9

NET

K

1,2

1,6

1,2

1,3

1,5

1,8

2,8

5,8

7,5

11,9

PC

E

3,2

4,1

5

6,9

7,8

8,8

8,2

9,2

11,4

11,5

NET

E

3,1

4,2

4,5

6,4

7,5

8,8

8,8

12,5

15,6

23

PC

T

2,2

2,7

3

3,8

4,4

5

5,3

6,5

7,5

8,5

NET

T

2

2,7

2,7

3,6

4,2

5

5,6

8,8

11,3

17

PC: Computer, Net: Internet, F: Female, M: Male, T: Total Source: (dokuz8haber, 2018)

RESEARCH: A HEALTH APP E-NABIZ The E-nabız implementation put into effect by the Republic of Turkey Ministry of Health on January 1, 2015 (Sözcü, 2019) is a platform through which you can make online appointments on any day, at any hour, from any institution you like, can access information regarding the institutions in the field of health

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 Accessibility for Everyone in Health Communication Mobile Application Usage

and also obtain data within the context of private health information such as prescription information, past analysis results, family practice information, etc. E-nabız is an application that citizens and health professionals can access health data collected from health institutions via internet and mobile devices. It is a personal health record system where you can manage all your health information and access your medical background from a single spot, regardless of where your examinations and treatments are performed. It is the world’s largest and most comprehensive health informatics sub-system, which you provide yourself, where your health records can be evaluated by physicians within the framework of an authority, the period and limits of which is determined, which in this way increases the quality and speed of the diagnosis and treatment process, enables the establishment of a strong communication network between you and your doctor and which you can reach safely through the internet (E-nabız). There are many ways to log into the E-nabız application. All the users who have e-government password (E-devlet, 2019), which has over 43 million registered users can easily login to the system. Apart from this way, you can also log into the system with a one time password, by having your e-signature, mobile signature and mobile number registered by your family doctor. (E-nabız)

The Aim and the Significance of the Research As in any period, health is one of the most important issues approached sensitively today. Health, which is defined not only as the state of being sick and healthy but also as a state of social and psychological well-being, is of great importance in the group classified as elderly as in all age groups. Universal access is every human’s common right without variables like age and gender. Mobile applications that are developed with the increase in the usage rate of mobile technology today make the lives of all the users easier in a certain way. However, the usability of the applications by the users from groups such as the ones with disabilities may not be as easy as in other user groups. The purpose of the usability test is to understand and research the usage of e-nabız applications on smartphones by female users above the age of 65, in other words, the accessibility status of e-nabız application. For this purpose, this study was conducted to measure the usability of these applications, evaluate the participation of the users in the applications and observe their experiences.

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The Limitations of the Research The study was conducted on female users above the age of 65. A survey was applied regarding the usability test before the study. The participants were selected according to the questions in the survey. All the participants in the study had E-devlet (e-government) memberships. Another limitation in the study is the fact that all the users had smartphones with the brand of iPhone. Another limitation for the users is that they had to apply to and were treated in/by hospitals, polyclinics or family physician because of their disease in the last year.

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 Accessibility for Everyone in Health Communication Mobile Application Usage

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Methodology of the Study When it came to the method, site and perspective of the study, the aim was to execute a study embodying the usability method, which is fed from the field of human-computer interaction, as both a method and a theoretical area. In the research, the user (experimental) based usability test was applied. The reason behind the execution of this test is its presentation of the most realistic data compared to other tests and its examination of real interfaces in specific real environments by the real user group and its analysis of the data to be obtained as a result of the test. Determination of the ideal number of people needed for usability tests is one of the most argued matters. According to Nielsen, “the number of people needed to reveal the basic problems related to a system in usability tests must be at least five”. Nielsen asserted that 75% of the problem can be revealed with five people in well-designed usability tests. Increasing the number of the users in the test, for example, increasing it from five to fifteen reveals about 15% of the problems (Çağıltay, 2011, p. 114). During the in-depth interviews with the firms working on usability in the sector, it was observed that these firms usually selected five people to conduct the test. Firms that apply the usability test increase the number of criteria rather than people and increase the number of people together with criteria. Thus, different results are researched for the test to be executed (Eken, 2017). In the study, the purposive sampling technique was used. Another sampling technique which is not based on probability is purposive or judgment sampling. The sampling in which subjects with certain characteristics are thought to comply with the research problem through personal observations in the research is called purposive sampling (Gürbüz & Şahin, 2016, p. 135). Three criteria were defined for user based usability tests. The usability test was conducted with fifteen people in total as five people for each criterion. The criteria defined for usability tests are the usage of smartphone at a low level, the usage of smartphone at a medium level and the usage of smartphone at a high level. The users selected for the usability test were chosen according to their levels of using a smartphone, which they provided after answering the certain survey questions. A certain amount of payment was made to all the visually impaired users who participated in the usability test for their attendance. Eight tasks were determined for the usability test. Usability tests were conducted via iPhone 6S with the operating system of Apple IOS 12.3.1. Before the tests, the factory setting of the smartphone were restored and all the programs were removed. After this operation, E-nabız (2.5.2) application was installed on the smartphone which would be used by the female users above the age of 65. All the passwords in the smartphone that would be used in the test for the female users above the age of 65 were removed. When the screen lock was opened, a folder was created named as test next to the appearing programs and the application was placed in this folder. Instead of a usability laboratory, the computer laboratory of Istanbul Medipol University Media Center was used so that the female users above the age of 65 could be comfortable during the test. In total, there are three attendants in the environment during the test: an attendant who follows the flow by asking questions, an attendant who takes note of the statements of the female users above the age of 65 and follows the task chart, and a cameraman who follows the tasks completed by the female users above the age of 65 on the smartphone. The female users above the age of 65 were requested to tell the tasks they performed during the test loudly. The performed tasks were both video and audio recorded. These user-based tests are the tests which present the most realistic data and are mostly used. On the other hand, these tests need to be elaborated very well and most of the mistakes are made in them.

620

Research Anthology on Improving Health Literacy Through Patient Communication and Mass Media, edited by Association, Information Resources Management, IGI Global, 2021. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/nyulibrary-ebooks/detail.action?docID=6686709. Created from nyulibrary-ebooks on 2021-09-02 06:30:41.

 Accessibility for Everyone in Health Communication Mobile Application Usage

The study was conducted in the computer laboratory of Istanbul Medipol University Media Center between July 1, 2019 and July 3, 2019. For the study, three criteria were determined; fifteen people were prepared in total as five people for each criterion. The criteria related to people were prepared according to their usage of smartphone at a low level, at a medium level and at a high level. Because the characteristics of each user were different from each other, the test durations also changed among the users. Among the users, the test durations changed between 45 minutes and 180 minutes.

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Findings of the Research Ten tasks were performed by fifteen different users on E-nabız application. On Table 2, ten tasks ranging from easy to difficult by women over the age of 65 and the data regarding these tasks are seen. Each task has a certain period of time and the number of buttons touched (steps) to be performed. In the table, the users between the 1st and the 5th were defined as those who can use the smartphone at a low level and the average of the users who use the smartphone at a low level was named as “Low (average)”. In the table, the users between the 6th and the 10th were defined as the users who can use the smartphone at the intermediate level and the average of the users who used the smartphone moderately was named as “Medium (average)”. In the table, users between the 11th and the 15th were defined as users who can use the smartphone at a good level and the average of the users who use it at a good level was named as “Good (average)”. The average of all users was named as “General (average)”. Each task requires a task duration and a number of steps to be performed. The optimal time and number of steps required for this time and number of steps is the overall average of all users. E-nabız (2.5.2) application and 10 tasks were determined for mobile usability testing. For E-nabız application, the tasks determined were “”Being able to enter your age, height, weight and blood information from the tab “Edit Profile””, “Being able to record by writing the phrase “I am allergic to penicillin” in my emergency notes ”,“”Finding the most recently visited hospital and being able to obtain the prescription written by the doctor, ” “Being able to open the prospectus of the medicine you bought the latest,” “Being able to find the hospital closest to your location, the address and the location of the hospital,” “Opening the notices section and being able to display your log ins in the system,” “Being able to make an appointment for the date July 31, 2019,” “Being able to be a blood donor by entering the bone morrow section,” “Being able to write and record the name İhsan Eken and the number 555 555 55 55, among the people to be called in stated of emergency,” “Finding the recently registered disease among my diseases, display it and being able to monitor the procedures later.” It is observed that all users were able to complete the first task, which is “Being able to enter your information of age, height, weight and blood information from the tab of editing profile.” The average time in which the users, who are between the 1th and 5th, that is who can use the smart phone at low levels can complete the task is 141.8 seconds and the average number of steps that they can complete the task is 25.75 steps. Within this group, the duration, which user 1, who is the fastest in the group completes the task is 120 seconds and the number of steps is 24. In this group, the duration of user 3, who completes the task the most slowly is 160 seconds and the number of steps is 28. The average time, that users who are between the 6th and 10th user, that is who can use smart phone at moderate levels can complete the task is 112.5 seconds and their average number of steps in completing the task is 21.33 steps. Within this group, the duration of user 9, who completes the task the fastest is 93 seconds, and the number of steps is 22. Within this group, the duration of the user 6, who completes the task in the slowest way is 128 seconds and the number of steps is 23. The average time that the users between the 11th and 621

Research Anthology on Improving Health Literacy Through Patient Communication and Mass Media, edited by Association, Information Resources Management, IGI Global, 2021. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/nyulibrary-ebooks/detail.action?docID=6686709. Created from nyulibrary-ebooks on 2021-09-02 06:30:41.

 Accessibility for Everyone in Health Communication Mobile Application Usage

15th user, who can use the smart phone at a good level can complete the task is 103.8 seconds and the average number of steps that they can complete the task is 22. Within this group, the duration of user 15, who completes the task the fastest is 90 seconds, and the number of steps is 20. Within this group, the duration of the user 14, who completes the task in the slowest way is 117 seconds and the number of steps is 24. The number of users, between the 1st and 15th users, whose duration of completing the first task is below the average duration is 8 (user 7, user 9, user 10, user 11, user 12, user 13, user 14 and user 15) and the number of users, whose duration of completing the first task is above the average is 7 (user 1, user 2, user 3, user 4, user 5, user 6, and user 8). The number of users, between the 1st and the 15th users, who completed the first task with less than the average number of steps is 9 (user 5, user 6, user 8, user 9, user 10, user 11, user 12, user 13 and user 15) and the number of users, who completed the first task with more than the average number of steps is 6 (user 1, user 2, user 3, user 4, user 7 and user 14). When the average duration of users is examined, all of the users who can use the smart phone at moderate (6-10) and good (11-15) levels have been found to perform their tasks below average time. When the users’ average number of steps was examined, users 7 and 14, who can use the smart phone at moderate (6-10) and good (11-15) levels were found to complete the task with a number of steps over the average. In addition, it was observed that even though the user 5 described him/herself as a user of smartphone at a low level, she completed the task with a smaller number of steps than the average. Table 2. The statistics of women over the age of 65, between their 1st and 5th tasks regarding the application of e-nabiz Task 1

Copyright © 2021. IGI Global. All rights reserved.

Second

Task 2 Steps

Second

Task 3 Steps

Second

Task 4 Steps

Second

Task 5 Steps

Second

Steps

User 1

120

24

95

30

115

19

38

17

43

5

User 2

132

27

110

32

124

21

43

17

39

6

User 3

160

28

143

35

157

23

69

19

71

6

User 4

147

25

131

36

160

23

61

20

59

6

User 5

150

23

85

37

100

15

30

20

60

5

User 6

128

23

95

30

98

19

48

20

27

4

User 7

117

24

100

29

152

20

63

17

29

5

User 8

127

22

125

34

113

19

87

31

46

7

User 9

93

22

103

32

124

20

41

17

28

5

User 10

113

19

100

31

109

18

35

12

22

4

User 11

94

21

100

31

97

19

38

14

22

5

User 12

110

23

107

32

100

20

41

19

28

5

User 13

108

22

105

31

103

20

40

20

30

5

User 14

117

24

109

32

101

19

47

23

31

5

User 15

90

20

92

30

92

19

36

13

21

4

Low (av.)

141,80

25,75

112,80

34,00

131,20

20,20

48,20

18,25

54,40

5,75

Modarete (av.)

112,50

21,33

101,50

31,75

110,33

19,00

38,00

14,50

28,00

5,00

Good (av.)

103,80

22,00

102,60

31,20

98,60

19,40

39,71

17,25

26,40

5,00

General (av.)

119,37

23,03

105,63

32,32

113,38

19,53

41,97

16,67

36,27

5,25

622

Research Anthology on Improving Health Literacy Through Patient Communication and Mass Media, edited by Association, Information Resources Management, IGI Global, 2021. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/nyulibrary-ebooks/detail.action?docID=6686709. Created from nyulibrary-ebooks on 2021-09-02 06:30:41.

Copyright © 2021. IGI Global. All rights reserved.

 Accessibility for Everyone in Health Communication Mobile Application Usage

It is seen that all users could complete the second task, which was being able to write the “I am allergic to penicillin,” in the emergency notes and record it. The average time that the users between the 1st and the 5th, that is users who can use the smart phone at a low level could complete the task was 112.8 seconds, and the average number of steps that they could complete the task was 34. Within this group, the duration of user 5, who completed his/her task the fastest is 85 seconds, and his/her number of steps is 37. In this group, the duration of user 3, who completed his/her task the most slowly is 143 seconds and his/her number of steps is 35. The average time that users between the 6th and 10th user, that is those who can use the smart phone at a moderate level could complete the task was 101.5 seconds and their average number of steps was 31.75. Within this group, the duration of the user 6, who completed the task the fastest was 95 seconds and his/her number of steps was 30. Within this group, the duration of the user 8, who completed the task in the slowest way was 125 seconds and his/her number of steps was 34. The average duration, that the users between the 11th and the 15th users, that is those who can use the smart phone at a good level could complete the task was 102.6 seconds and their average number of steps was 31.2. . Within this group, the duration of the user 15, who completed the task the fastest was 92 seconds and his/her number of steps was 30. In this group, the duration of user 14, who completed his/her task the most slowly was 109 seconds and his/her number of steps was 32. The number of users, between the 1st and 15th user, who completed the second task below the average time is 9 (user 1, user 5, user 6, user 7, user 9, user 10, user 11, user 13 and user 15) and the number of users, who completed the task above the average time is 6 (user 2, user 3, user 4, user 8, user 12, and user 14). The number of users, between the 1st and 15th user, whose number of steps was below the average is 11 (user 1, user 2, user 6, user 7, user 9, user 10, user 11, user 12, user 13, user 14, and user 15) and the number of users, whose number of steps was above the average is 4 (user 3, user 4, user 5 and user 8). When the average duration of users was examined, it was seen that among the users who can use the smartphone at moderate (6-10) and good (11-15) levels, user 8, user 12 and user 14 performed their tasks above the average duration. Besides, even though users 1 and 5 described themselves as users of smart phones at a low level, they were found to complete their tasks under the average duration. When the users’ average number of steps was examined, it was seen that all users who can use the smart phone at a good level (11-15) completed the task with a number of steps below the average. In addition, even though users 1 and 2 defined themselves as users of smart phone at a low level, they were found to complete the task with a number of steps below the average. All the users were observed to complete the third task, which was “Finding the most recently visited hospital and being able to obtain the prescription written by the doctor.” The average duration that the users between the 1st and the 5th, that is those who can use the smart phone at a low level could complete the task was 131.2 seconds and the average number of steps that they could complete the task was 20.2. Within this group, the duration of user 5, who completed his/her task the fastest was 100 seconds, and his/her number of steps was 15. Within this group, the duration of the user 4, who completed his/ her task in the slowest way was 160 seconds and his/her number of steps was 23. The average duration, in which the users between the 6th and the 10th, that is those who can use the smart phone at a moderate level could complete the task was 110.33 seconds and the average number of steps with which they could complete the task was 19. Within this group, the duration of the user 6, who completed the task the fastest was 98 seconds and his/her number of steps was 19. In this group, the duration of user 7, who completed his/her task the most slowly was 152 seconds and his/her number of steps was 20. The average duration, that the users between the 11th and the 15th users, that is those who can use the smart

623

Research Anthology on Improving Health Literacy Through Patient Communication and Mass Media, edited by Association, Information Resources Management, IGI Global, 2021. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/nyulibrary-ebooks/detail.action?docID=6686709. Created from nyulibrary-ebooks on 2021-09-02 06:30:41.

Copyright © 2021. IGI Global. All rights reserved.

 Accessibility for Everyone in Health Communication Mobile Application Usage

phone at a good level could complete the task was 98.6 seconds and their average number of steps was 19.4. Within this group, the duration of the user 15, who completed the task the fastest was 92 seconds and his/her number of steps was 19. In this group, the duration of user 13, who completed his/her task the most slowly was 103 seconds and his/her number of steps was 20. The number of users, between the 1st and the 15th users, who completed the third task with a duration less than the average is 9 (user 5, user 6, user 8, user 10, user 11, user 12, user 13, user 14 and user 15) and the number of users, who completed the third task with a duration more than the average is 6 (user 1, user 2, user 3, user 4, user 7 and user 9). The number of users, between the 1st and the 15th user, who completed the third task with a number of steps less than the average is 8 (user 1, user 5, user 6, user 8, user 10, user 11, user 14 and user 15) and the number of users who completed the third task with a number of steps more than the average is 7 (user 2, user 3, user 4, user 7, user 9, user 12, and user 13). When the average duration of users is examined, all of the users who can use the smart phone at a good (11-15) level were found to perform their tasks below the average duration. Besides, even though users 5 defined him/herself as a user of smart phone at a low level, s/he was found to complete his/her task with a duration less than the average. When the average number of steps of users was examined, it was seen that none of the users who can use the smart phone at low (1-5), moderate (6-10) and good (11-15) levels could complete the task with a number of steps below the average. It is seen that all the users were able to complete the fourth task, which is “Being able to open the prospectus of the medicine you bought most recently from the “my medicines” tab. The average duration in which the users between the 1st and the 5th, that is those who can use the smart phone at a low level could complete the task was 48.2 seconds and their number of steps was 18.25. Within this group, the duration of user 5, who completed his/her task the fastest was 30 seconds, and his/her number of steps was 20. In this group, the duration of user 3, who completed his/her task the most slowly was 69 seconds and his/her number of steps was 19. The average duration, in which the users between the 6th and the 10th, that is those who can use the smart phone at a moderate level could complete the task was 38 seconds and the average number of steps with which they could complete the task was 14.5. Within this group, the duration of user 10, who completed his/her task the fastest was 35 seconds, and his/her number of steps was 12. Within this group, the duration of the user 8, who completed his/her task in the slowest way was 87 seconds and his/her number of steps was 31. The average duration, that the users between the 11th and the 15th users, that is those who can use the smart phone at a good level could complete the task was 39.71 seconds and their average number of steps was 17.25. Within this group, the duration of the user 15, who completed the task the fastest was 36 seconds and his/her number of steps was 13. Within this group, the duration of the user 14, who completed his/her task in the slowest way was 47 seconds and his/her number of steps was 23. The number of users, between the 1st and 15th user, who completed the fourth task below the average duration is 8 (user 1, user 5, user 9, user 10, user 11, user 12, user 13 and user 15) and the number of users, who completed the task above the average duration is 7 (user 2, user 3, user 4, user 6, user 7, user 8, and user 14). The number of users, between the 1st and the 15th user who completed the fourth task with a number of steps below the average is 3 (user 10, user 11 and user 15) and the number of users who completed the fourth task with a number of steps above the average is 12 (user 1, user 2, user 3, user 4, user 5, user 6, user 7, user 8, user 9, user 12, user 13, and user 14). When the average time and steps of users are examined, the average of the users who can use the smart phone at the a moderate (6-10) level was found to be lower than the average of the users who can use the smart phone at a good level (11-15).

624

Research Anthology on Improving Health Literacy Through Patient Communication and Mass Media, edited by Association, Information Resources Management, IGI Global, 2021. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/nyulibrary-ebooks/detail.action?docID=6686709. Created from nyulibrary-ebooks on 2021-09-02 06:30:41.

Copyright © 2021. IGI Global. All rights reserved.

 Accessibility for Everyone in Health Communication Mobile Application Usage

It is seen that all users could complete the fifth task, which is “Finding the nearest hospital to your location and being able to obtain the hospital address and location”. The average duration in which the users between the 1st and the 5th, that is those who can use the smart phone at a low level could complete the fifth task was 54.4 seconds and the average number of steps with which they could complete the task was 5.75. Within this group, the duration of user 2, who completed his/her task the fastest was 39 seconds and his/her number of steps was 6. In this group, the duration of user 3, who completed his/ her task the most slowly was 71 seconds and his/her number of steps was 6. The average duration, in which the users between the 6th and the 10th, that is those who can use the smart phone at a moderate level could complete the task was 28 seconds and the average number of steps with which they could complete the task was 5. Within this group, the duration of user 8, who completed his/her task the fastest was 22 seconds and his/her number of steps was 4. Within this group, the duration of user 8, who completed his/her task in the slowest way was 46 seconds and his/her number of steps was 7. The average duration, that the users between the 11th and the 15th users, that is those who can use the smart phone at a good level could complete the fifth task was 26.4 seconds and their average number of steps was 5. Within this group, the duration of the user 15, who completed the task the fastest was 21 seconds and his/her number of steps was 4. In this group, the duration of user 14, who completed his/her task the most slowly was 31 seconds and his/her number of steps was 5. The number of users, whose duration of completing the fifth task was below the average is 9 (user 6, user 7, user 9, user 10, user 11, user 12, user 13, user 14 and user 15) and the number of users, whose duration of completing the task was above the average is 6 (user 1, user 2, user 3, user 4, user 5 and user 8). The number of users, between the 1st and 15th users, who completed the fifth task with a number of steps below the average is 11 (user 1, user 5, user 6, user 7, user 9, user 10, user 11, user 12, user 13, user 14, and user 15) and the number of users, whose number of steps was above the average is 4 (user 2, user 3, user 4 and user 8). When the users’ average duration and their number of steps is examined, all of the users who can use the smart phone at a good (11-15) level were found to complete their tasks below the average duration and number of steps. It is seen that all the users were able to complete the sixth task, which was “Opening the notification section and being able to display your entries.” The average duration, with which the users between the 1st and the 5th, that is that is those who can use the smart phone at a low level could complete the sixth task was 33.2 seconds and the average number of steps with which they could complete the task was 5.25 Within this group, the duration of the user 5, who completed the task the fastest was 19 seconds and his/her number of steps was 4. In this group, the duration of user 2, who completed his/her task the most slowly was 43 seconds and his/her number of steps was 6. The average duration in which the users between the 6th and the 10th, that is those who can use the smart phone at a moderate level could complete the sixth task was 22.75 seconds and their average number of steps was 4.75. Within this group, the duration of user 10, who completed his/her task the fastest was 13 seconds, and his/her number of steps was 5. Within this group, the duration of user 9, who completed his/her task in the slowest way was 41 seconds and his/her number of steps was 7. The average time that the users between the 11th and 15th user, who can use the smart phone at a good level could complete the task was 18.8 seconds and the average number of steps with which they could complete the task was 3.67. Within this group, the duration of the user 15, who completed his/her task the fastest was 15 seconds and his/her number of steps was 3. Within this group, the duration of the user 14, who completed his/her task in the slowest way was 22 seconds and his/her number of steps was 4. The number of users, between the 1st and the 15th users, who completed the sixth task with a duration less than the average is 11 (user 3, user 5, user

625

Research Anthology on Improving Health Literacy Through Patient Communication and Mass Media, edited by Association, Information Resources Management, IGI Global, 2021. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/nyulibrary-ebooks/detail.action?docID=6686709. Created from nyulibrary-ebooks on 2021-09-02 06:30:41.

 Accessibility for Everyone in Health Communication Mobile Application Usage

6, user 7, user 8, user 10, user 11, user 12, user 13, user 14 and user 15) and the number of users, who completed the sixth task with a duration above the average is 4 (user 1, user 2, user 4 and user 9). The number of users, between the 1st and 15th users, who completed the sixth task with a number of steps below the average is 11 (user 3, user 4, user 5, user 6, user 7, user 8, user 11, user 12, user 13, user 14, and user 15) and the number of users, whose number of steps was above the average is 4 (user 1, user 2, user 9 and user 10). When the average duration of users was examined, it was determined that all users, except for the user 9, who can use the smart phone at a moderate (6-10) and good (11-15) level, completed their tasks below average duration. Besides, even though users 3 and 5 described themselves as users of smartphone at a low level, they completed their tasks in a duration below the average. When the users’ average number of steps was examined, it was seen that all users who can use the smart phone at a good level (11-15) completed the task with a number of steps below the average. In addition, even though the users 3, 4 and 5 described themselves as users of smart phone at a low level, they were found to have completed their tasks with a number of steps below the average. Table 3. The Statistics of women over the age of 65, between their 6st and 10th tasks regarding the application of e-nabiz Task 6

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Second

Task 7 Steps

Second

Task 8 Steps

Second

Task 9 Steps

Second

Task 10 Steps

Second

Steps

User 1

54

7

312

103

89

31

78

39

41

5

User 2

43

6

290

98

85

32

70

37

39

6

User 3

21

3

267

90

74

23

61

32

34

6

User 4

29

4

279

93

77

21

69

32

35

6

User 5

19

4

261

87

70

21

64

31

25

6

User 6

15

3

267

88

51

16

63

37

20

6

User 7

17

3

257

82

51

15

53

30

20

6

User 8

18

4

71

34

73

34

43

4

User 9

41

7

278

86

70

14

50

31

37

4

User 10

13

5

275

95

65

20

53

35

15

3

User 11

16

3

260

80

45

12

48

30

21

3

User 12

19

4

254

81

60

15

51

31

29

4

User 13

17

3

263

84

59

15

50

30

30

4

User 14

22

4

271

89

63

14

52

32

23

3

User 15

15

3

250

80

46

14

47

30

17

3

Low (av.)

33,20

5,25

281,80

94,20

79,00

25,60

68,40

34,33

34,80

5,80

Modarete (av.)

22,75

4,75

269,25

87,75

68,67

19,80

53,00

35,00

27,00

4,60

Good (av.)

17,80

3,67

259,60

82,80

54,60

14,00

49,60

30,50

24,00

3,40

General (av.)

24,58

4,56

270,22

88,25

67,42

19,80

57,00

33,28

28,60

4,60

626

Research Anthology on Improving Health Literacy Through Patient Communication and Mass Media, edited by Association, Information Resources Management, IGI Global, 2021. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/nyulibrary-ebooks/detail.action?docID=6686709. Created from nyulibrary-ebooks on 2021-09-02 06:30:41.

Copyright © 2021. IGI Global. All rights reserved.

 Accessibility for Everyone in Health Communication Mobile Application Usage

It is seen that all users, except user 8, could complete the seventh task which is “Being able to make an appointment for July 31, 2019.” The average duration that the users between the 1st and the 5th, that is those who can use the smart phone at a low level could complete the task was 281.8 seconds and the average number of steps with which they could complete the task was 94.2. Within this group, the duration of user 5, who completed his/her task the fastest was 261 seconds, and his/her number of steps was 87. Within this group, the duration of the user 1, who completed the task in the slowest way was 312 seconds and his/her number of steps was 103. The average duration, in which the users between the 6th and the 10th, that is those who can use the smart phone at a moderate level could complete the seventh task was 269.71 seconds and the average number of steps with which they could complete the task was 87.75. Within this group, the duration of user 7, who completed his/her task the fastest was 257 seconds, and his/her number of steps was 82. Within this group, the duration of user 9, who completed his/her task in the slowest way was 278 seconds and his/her number of steps was 86. The average duration, that the users between the 11th and the 15th users, users, that is those who can use the smart phone at a good level could complete the task was 259.6 seconds and their average number of steps was 82.8. Within this group, the duration of user 15, who completed his/her task the fastest was 250 seconds, and his/her number of steps was 80. Within this group, the duration of user 14, who completed his/her task in the slowest way was 271 seconds and his/her number of steps was 89. The number of users, between the 1st and the 15th users, who completed the seventh task with a duration less than the average was 8 (user 3, user 5, user 6, user 7, user 8, user 11, user 12, user 13 and user 15) and the number of users, who completed the seventh task with a duration above the average is 6 (user 1, user 2, user 4, user 9, user 10 and user 14). The number of users, between the 1st and the 15th users, who completed the seventh task with a number of steps less than the average is 8 (user 5, user 6, user 7, user 8, user 9, user 11, user 12, user 13 and user 15) and the number of users, who completed the seventh task with a number of steps less than the average is 6 (user 1, user 2, user 3, user 4, user 10 and user 14). It is seen that all users were able to complete the eighth task, which is “Being able to be a blood donor by entering the section of bone marrow”. The average duration in which the users between the 1st and the 5th, that is those who can use the smart phone at a low level could complete the eighth task was 79 seconds and their number of steps was 25.6. Within this group, the duration of user 5, who completed his/her task the fastest was 70 seconds, and his/her number of steps was 21. Within this group, the duration of the user 1, who completed his/her task in the slowest way was 89 seconds and his/her number of steps was 31. The average duration, in which the users between the 6th and the 10th, that is those who can use the smart phone at a moderate level could complete the task was 68.67 seconds and the average number of steps with which they could complete the task was 19.8. Within this group, the duration of users 6 and 7, who completed their tasks the fastest was 51 seconds and their number of steps was 16 and 15. Within this group, the duration of the user 8, who completed his/her task in the slowest way was 71 seconds and his/her number of steps was 34. The average duration, that the users between the 11th and the 15th users, users, that is those who can use the smart phone at a good level could complete the eighth task was 54.6 seconds and their average number of steps was 14. Within this group, the duration of user 11, who completed his/her task the fastest was 45 seconds, and his/her number of steps was 12. Within this group, the duration of the user 14, who completed his/her task in the slowest way was 63 seconds and his/her number of steps was 14. The number of users, between the 1st and the 15th users, who completed the eighth task with a duration below the average is 8 (user 6, user 7, user 10, user 11, user 12, user 13, user 14 and user 15) and the number of users, whose duration of completing the task was above the average is 7 (user 1, user 2, user 3, user 4, user 5, user 8 and user 9). The number of users, 627

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 Accessibility for Everyone in Health Communication Mobile Application Usage

between the 1st and the 15th users, who completed the eighth task with a number of steps less than the average is 8 (user 6, user 7, user 9, user 11, user 12, user 13, user 14 and user 15) and the number of users, who completed the eighth task with a number of steps above the average is 7 (user 1, user 2, user 3, user 4, user 5, user 8 and user 10). When the average duration of users was examined, it was found that all users who can use smart phone at a good level (11-15) completed their tasks within a duration below the average. When the users’ average number of steps was examined, it was seen that all users who can use the smart phone at a good level (11-15) completed the task with a number of steps below the average. It is seen that all users were able to complete the ninth task, which is “Being able to write and register the name İhsan Eken and the number 555 555 55 55, to be included among the people to be called in a state of emergency. The average duration in which the users between the 1st and the 5th, that is those who can use the smart phone at a low level could complete the ninth task was 68.4 seconds and the average number of steps with which they could complete the task was 34.33. Within this group, the duration of user 3, who completed his/her task the fastest was 61 seconds, and his/her number of steps was 32. Within this group, the duration of the user 1, who completed his/her task in the slowest way was 78 seconds and his/her number of steps was 39. The average duration, within which the users between the 6th and the 10th, that is those who can use the smart phone at a moderate level could complete the ninth task was 53 seconds and the average number of steps with which they could complete the task was 35. Within this group, the duration of user 9, who completed the task the fastest was 50 seconds, and his/her number of steps was 31. Within this group, the duration of user 8, who completed his/her task in the slowest way was 73 seconds and her number of steps was 34. The average duration, that the users between the 11th and the 15th, that is those who can use the smart phone at a good level could complete the fifth task was 49.6 seconds and their average number of steps was 30.5. Within this group, the duration of user 11, who completed his/her task the fastest was 45 seconds, and his/her number of steps was 12. Within this group, the duration of the user 15, who completed his/her task in the slowest way was 47 seconds and his/her number of steps was 30. The number of users, between the 1st and the 15th, whose duration of completing the ninth task is below the average is 8 (user 7, user 9, user 10, user 11, user 12, user 13, user 14 and user 15) and the number of users, whose duration of completing the task was above the average is 7 (user 1, user 2, user 3, user 4, user 5, user 6, and user 8). The number of users, between the 1st and 15th users, who completed the sixth task with a number of steps below the average is 10 (user 3, user 4, user 5, user 7, user 9, user 11, user 12, user 13, user 14 and user 15) and the number of users, whose number of steps was above the average is 5 (user 2, user 6, user 8 and user 10). When the average duration of users was examined, it was found that all users who can use smart phone at a good level (11-15) completed their tasks within a duration below the average. When the users’ average number of steps was examined, it was seen that all users who can use the smart phone at a good level (11-15) completed the task with a number of steps below the average. In addition, even though the users 3, 4 and 5 described themselves as users, users of smart phone at a low level, they were found to have completed their tasks with a number of steps below the average. It is seen that all users could complete the tenth task, which is “Finding and displaying your most recently registered disease from my illnesses and then being able to monitor the processes.” The average duration that the users between the 1st and the 5th, that is those who can use the smart phone at a low level could complete the task was 34.8 seconds and the average number of steps with which they could complete the task was 5.8. Within this group, the duration of user 5, who completed his/her task the fastest was 25 seconds, and his/her number of steps was 6. Within this group, the duration of user 1, who completed his/her task in the slowest way was 41 seconds and his/her number of steps was 5. The 628

Research Anthology on Improving Health Literacy Through Patient Communication and Mass Media, edited by Association, Information Resources Management, IGI Global, 2021. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/nyulibrary-ebooks/detail.action?docID=6686709. Created from nyulibrary-ebooks on 2021-09-02 06:30:41.

 Accessibility for Everyone in Health Communication Mobile Application Usage

Copyright © 2021. IGI Global. All rights reserved.

average duration, within which the users between the 6th and the 10th10th, that is those who can use the smart phone at a moderate level could complete the tenth task was 27 seconds and the average number of steps with which they could complete the task was 4.6. Within this group, the duration of user 10, who completed his/her task the fastest was 15 seconds and his/her number of steps was 3. Within this group, the duration of user 8, who completed his/her task in the slowest way was 43 seconds and his/her number of steps was 4. The average duration, that the users between the 11th and the 15th users,, that is those who can use the smart phone at a good level could complete the tenth task was 24 seconds and their average number of steps was 3.4. Within this group, the duration of user 11, who completed his/her task the fastest was 45 seconds, and his/her number of steps was 12. Within this group, the duration of user 15, who completed his/her task the fastest was 17 seconds and his/her number of steps was 3. The number of users, between the 1st and 15th, who completed the tenth task within a duration below the average is 7 (user 5, user 6, user 7, user 10, user 11, user 14 and user 15) and the number of users who completed the task within a duration above the average is 8 (user 1, user 2, user 3, user 4, user 8, user 9, user 12 and user 13). The number of users, between the 1st and 15th, who completed the tenth task with a number of steps below the average is 8 (user 8, user 9, user 10, user 11, user 12, user 13, user 14 and user 15) and the number of users, who completed the task with a number of steps above the average is 7 (user 1, user 2, user 3, user 4, user 5, user 6 and user 7). When the users’ average number of steps was examined, it was seen that all users who can use the smart phone at a good level (11-15) completed the task with a number of steps below the average. When the ten tasks performed by women users over the age of 65 on E-nabız application were examined regarding duration on Table 2 and Table 3, it was found that the task finished within the longest duration in terms of general average is the seventh task. The average duration of the completion of this task is 270.22 seconds. The task completed by the users within the shortest period of time is the sixth task with an average of 24.58 seconds. If the duration of users’ completion of tasks is to be ordered, the sorting will be as the 6th task (av. 24.58 sec.), the 10th task (av. 28.6 sec.), the 5th task (av. 36.27 sec.), the 4th task (av. 41.97 sec.), the 9th task (av. 57 sec.), the 8th task (av. 67.42 sec.), the 2nd task (av. 105.63 sec.), the 3rd task (av. 113.38 sec.), the 1st task (av. 119.37 sec.), the 7th task (av. 270.22 sec.). When the users’ number of steps taken during the completion of the 10 tasks is examined, the task with the most number of steps was found to be the seventh task. The number of steps taken in this task is 88.25 in average. The task with the least number of user steps is the sixth task with an average of 4.56 steps. If the users’ completion of task is ordered by the number of steps, the sorting will be as the 6th task (av. 4.56 steps), 10th task (av. 4.6 steps), 5th task (av. 5.25 steps), 4th task (av. 16.67 steps), 3rd task (av. 19.53 steps), 8th task (av. 19.8 steps, 1st task (av. 23.03 steps), 2nd task (av. 32.32 steps), 9th task (av. 33.28 steps), 7th task (av. 88.25 steps).

SOLUTIONS AND RECOMMENDATIONS The concept of health is the leading topic among the topics, which the individuals are most sensitive about, not only in the world but also in our country. The digital world, which is constantly changing and transforming, has become an area where individuals spend time every minute without the concept of time. In this context, health services offerings have started to become more attractive and easy for users through the digital world. The development of technology does not only effect all kinds of fields such as media, finance, security, etc., but also transforms the forms of providing service. Concepts such as successful 629

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 Accessibility for Everyone in Health Communication Mobile Application Usage

service delivery, health literacy, healthcare workers’ communication and health communication often constitute the agenda of our day. At this point, it should be taken into consideration that being healthy is the basic freedom, and especially in public applications, universal design principles, accessibility and usability should be prioritized. The fact that every communication area in health communication is aimed at meeting the needs of the user is a matter of fundamental human rights rather than a necessity. The individual should be able to access any information s/he needs, any time, any minute, by him/ herself without the help of anyone else. Digital transformation, which is one of the easing elements of life, shows itself in the field of health by constantly renewing itself. E-nabız, which is a public practice, enables individuals to make life easier at the point of health services, to make an online appointment at any day and time from the institution s/he likes to have access to information about institutions in the field of health, as well as prescription information, past analysis results, family practice information etc. Reproduction and development of such applications according to universal design principles, especially their being used by the disabled, elderly, etc., which are thought to be in need of help in the society without the help of others will allow them to act independently.

FUTURE RESEARCH DIRECTIONS

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In line with the new technologies developed in the field of health as in all other fields, applications are being developed to provide benefits by accessing individuals more easily and faster. Health is one of the areas, which individuals prioritize the most in their lives. At this point, individuals want to be in a position where they can immediately access any information they need. Technological advances provide convenience to users with instant access to information, interactivity and recycling features. Health practices are also adapted to these areas by changing and transforming. Today, within the scope of health communication, many different applications are preferred by individuals, especially on the basis of smart phones. E-nabız is also vital for users in terms of providing individuals with instant access to relevant and necessary health information. The increase in the number of the E-nabız application and similar applications can help people to pursue their lives in a healthier way. At this point, the necessary studies should be carried out in order to increase such applications. Not all users have the same attributes or characteristics. Users are differentiated by age, gender and disability. Especially public applications should be designed in line with the universal design principles, for them to be used by all people. These applications should especially also be tested by user groups such as the disabled and the elderly and their use of these applications should be encouraged.

CONCLUSION The concepts of being healthy, living in a healthy environment and health rights go back to the oldest periods of human existence. In the general definitions of the concept of health, non-sickness is indicated. However, considering current developments, the issue cannot be confined to disease or disability alone. In this context, physiological, psychological and social life concepts should also be considered. Each of these concepts forms a basic network in relation to each other. Many health care applications are on the agenda in terms of health promotion. These constantly evolving applications help individuals to access the information they want instantly. The aim is to ensure that the individuals in the society have the 630

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 Accessibility for Everyone in Health Communication Mobile Application Usage

highest level of health and to provide high quality services. Here, the ultimate responsibility lies with the individual, but also the private sector, especially the state, has a number of duties to increase public and private practices. As new technologies, mobile devices and especially smart phones are constantly renewed and play a key role in our lives, health services have to be directed towards this field. Considering that each individual has different knowledge and skills, new applications adapted to the use of technology serve the majority of health services. Individuals often make use of these digital platforms. E-nabız application, which is one of the most frequently used mobile applications in the recent period, is a platform where there are many links and sharing areas from reports containing all the health information of individuals to prescription and medicine sections. Within the scope of the research, mobile accessibility of female users over the age of 65 was investigated. Usability tests were conducted with women over 65 years of age according to their smartphone usage level. In the usability test, depending on the mobile applications, the statistical relationships between the application usage efficiency (task completion success), efficiency (task completion time and number of steps used) and satisfaction levels of the users have emerged. Female users over the age of 65 (older) are also just one of the groups seen outside of general users. The fact that the individual can act alone and use the applications alone without needing anybody is very important in the current period when new communication technologies are developed. Female users over 65 years of age (elderly) can move more freely and more independently thanks to mobile applications. Due to a number of financial concerns, websites or applications are made for general user groups. Elderly, disabled etc. user groups do not want a customary application to be made for them. Because, these types of practices, made for the small groups in the society are terminated after one or two updates, especially due to commercial concerns. In order to prevent this situation, the applications made for the users in the groups composed of the elderly, disabled, etc. may be designed in line with the universal design principles. Furthermore, if innovations in applications are subjected to usability test by various user groups, each user can use the application on equal terms. In this study, while accessibility problems of E-nabız mobile application were identified, solution offers for these accessibility problems were also presented and discussed. E-nabız, which is one of the most important applications in the field of health in Turkey, is also studied academically by many researchers. Users can access the E-nabız application in many ways. More than 43 million E-devlet users are potentially also E-nabız users. In addition to entering the system with the e-government user code, you can also log into the system as a member of the E-nabız system. In the E-nabız application, which was schemed as a plain and simple design when the application interface was examined, a design was formed with colorful boxes for the information it comprises by writing names on the boxes. Not all the people using E-nabız may be expected to use smartphone technology very well or they may not want to read all the boxes. If a search bar can be added to the top of your personal information in the application, this may also enable the elderly, disabled etc. to find the information they want to find more easily. For the information such as height and weight, which are in the first task to be entered, it is necessary to enter the profile editing option. It is not very easy for every user to find this option. If the search bar is made here, it may be easier for users to find the information they are looking for in the system. In the third task, which is “Finding the hospital you visited most recently and being able to obtain the prescription written by the doctor,” when you enter the hospital from my visits, you can see the information of hospital, doctor, etc. without displaying the details. If a prescription link can also be added

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 Accessibility for Everyone in Health Communication Mobile Application Usage

here, it will save users time. When the user wants to see recipes from my visits, he or she will have to go to the home tab and search again to find the desired location. In the fifth task, which is “finding the hospital closest to your location and being able to obtain the address and the location of the hospital,” you can see all the hospitals in your district by marking them on the maps. However, when you click on the balloon marked on the map, you can only see the name of the hospital. With a link to be added here, when the user clicks on the balloon marked, the map application will be opened, and thanks to the navigation it may be easier for users to access the hospitals or polyclinics they want to reach, if they are provided with the route and the information by walking, by their personal cars or public transportation. In the seventh task entitled “being able to make an appointment for the date July 31, 2019,” you must first select the appointments option on the main page. When you select the option of “make an appointment from here,” you are directed to a different system to make an appointment. You are confronted with the Republic of Turkey, Central Physician Appointment System. You must be a member here. Re-membership also affects the usability of the application. You must have a username and password to log in to the E-nabız application. The fact that there are two passwords in the application especially affects the usage of the application by users such as the disabled and the elderly. If the entire system can be accessed with a single password, the usability of the application can reach a better point. The “OK” button in the top corner of the application design is particularly confusing to users. OK is a word used to confirm an event. When users click the OK button, the button removes the user from the system. Writing the output word instead of OK may be a factor that specifically improves the usability of the application. The “” marks at the bottom of the application design are used for backward or forward page orientation. Among these signs, only the “” (forward) sign, which is next to this sign does not work. This research has not only identified the accessibility problems of the E-nabız application, but also tried to to provide possible solutions to these accessibility problems. The aim here is to enable women over the age of 65 to continue their lives in a healthier way thanks to technological advances.

REFERENCES Aziz, A. (2012). İletişime Giriş. İstanbul: Hiperlink Yayınları. Bourse, M., & Yücel, H. (2012). İletişim Bilimlerinin Serüveni. İstanbul: Ayrıntı Yayınları.

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Çağıltay, K. (2011). İnsan Bilgisayar Etkileşimi ve Kullanılabilirlik Mühendisliği: Teoriden Pratiğe. Ankara: ODTÜ Geliştirme Vakfı Yayıncılık. dokuz8haber. (2018, December 13). Verilerle Türkiye’de toplumun bilgisayar ve internet kullanımında değişim. Retrieved from https://dokuz8haber.net/toplum-yasam/bilim-teknoloji/verilerle-turkiyedetoplumun-bilgisayar-ve-internet-kullaniminda-degisim/ E-devlet. (2019, August 15). Ana Sayfa. Retrieved from https://www.turkiye.gov.tr/ E-nabız. (n.d.). E-NABIZ. Retrieved from https://enabiz.gov.tr/Yardim/Index?page=a1&detail=b1

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Eken, İ. (2017). Herkes İçin Erişilebilir İletişim, Görme Engelli Kullanicilarin Mobil Erişebilirliği: Kullanilabilirlik Yaklaşimi İle Mobil Uygulamalarin Analizi. İstanbul: İstanbul Ticaret Üniversitesi Sosyal Bilimler Enstitüsü Yayımlanmamış Doktora Tezi. Gürbüz, S., & Şahin, F. (2016). Sosyal Bilimlerde Araştırma Yöntemleri. Ankara: Seçkin Yayıncılık. İlal, E. (1997). İletişim Yığınsal İletişim Araçları ve Toplum. İstanbul: Der Yayınları. Mısırlı, İ. (2007). Genel ve Teknik İletişim Kavramlar,İlkeler ve Uygulamalar. Ankara: Detay Yayıncılık. Okay, A. (2009). Sağlık İletişimi. İstanbul: MediaCat Yayınları. Okay, A. (2014). Sağlık İletişimi. İstanbul: Derin Yayınları. Oskay, Ü. (1992). İletişimin ABCsi. İstanbul: Simavi Yayınları. Özkan, Z. (2011). 66 Soruda Sağlıkta İletişimin Gücü. İstanbul: Optimist Yayınları. Rızvanoğlu, K. (2009). Herkes İçin Web: Evrensel Kullanılabilirlik ve Tasarım. İstanbul: Punto Yayınları. Shneiderman, B. (1999). 7 31). Pushing Human-Computer Interaction Research to Empower Every Citizen: Universal Usability. Communications of the ACM, 43(5), 85–91. Sözcü. (2019, April 30). E Nabız nedir? Nasıl kayıt olunur? Retrieved from https://www.sozcu.com. tr/2019/ekonomi/e-nabiz-nedir-nasil-kayit-olunur-szcu1-4612566/ Tabak, R. (2006). Sağlık İletişimi. İstanbul: Literatürk Yayıncııık. Törenli, N. (2005). Yeni Medya, Yeni İletişim Ortamı. Ankara: Bilim ve Sanat Yayınları. Tübitak, & Kalkınma Bakanlığı. (n.d.). Kamu İnternet Siteleri Rehberi İnternet Sitelerinde Kullanılabilirlik. Ankara: Tübitak. Kalkınma Bakanlığı. Tüfekçioğlu, H. (1997). İletişim Sosyolojisine Başlangıç. İstanbul: Der Yayınları. Uğurlu, M. (2018). Sağlık Teknolojisi Değerlendirmesi Ülke Uygulamaları ve Türkiye İçin Model Önerisi. Ankara: T.C Maliye Bakanlığı Strateji Geliştirme Başkanlığı Yayınları. Yakut, İ. (2008). Sağlık İletişiminde Katılımın İşlevi Hasta ve Hasta Yakınları Açısından. İzmit: Umuttepe Yayınları.

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Yüksel, E. at el. (2014). Check Up Sağlık İletişimi Kaynak İleti ve Hedef Kitle Bağlamında Sağlık Konulu Yayınların Analizi. Konya: Literatürk. Zıllıoğlu, M. (2003). İletişim Nedir? İstanbul: Cem Yayınevi.

KEY TERMS AND DEFINITIONS Accessibility: It is the state of each user to have access to any information at any time. Availability: It is the use of web sites, programs or applications by people efficiently, effectively and satisfactorily.

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 Accessibility for Everyone in Health Communication Mobile Application Usage

E-nabız: It is an application developed by the Ministry of Health of the Republic of Turkey, which comprises the health information of all citizens of the Republic of Turkey. Health: a state of psychological, physical and social well-being. Health Communication: All applications for the protection and promotion of health. Mobile Application: The applications, which have recently emerged with the Internet and smart phones and which enable people to obtain information in the areas of entertainment, business, education, etc. and spend time. User-based Usability Testing: It is the testing of the application by various elements such as moderator and rapporteur, on real users, by assigning various tasks. User Diversity: User groups divided into various factors such as age, gender and disability.

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This research was previously published in Multidimensional Perspectives and Global Analysis of Universal Health Coverage; pages 152-181, copyright year 2020 by Medical Information Science Reference (an imprint of IGI Global).

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Chapter 34

The Science of Individuality and Tailored M-Health Communication Anastasius S. Moumtzoglou https://orcid.org/0000-0002-5899-1033 P&A Kyriakou Children’s Hospital, Greece

ABSTRACT The era of the science of individuality promises to fully recognize the uniqueness of the individual who needs to be seen and treated with utter respect for his or her individuality. It will not be long until digitizing a person unlocks the cause for what is wrong, creating valuable knowledge that can save a life or markedly improve the quality of life. On the other hand, emerging m-health technologies provide fundamentally different ways of looking at tailored communication technology. As a result, tailored communications research is poised at a crossroads. It needs to both build on and break away from existing frameworks into new territory, realizing the necessary commitment to theory-driven research at basic, methodological, clinical, and applied levels. The chapter envisions tailored m-health communication in the context of the science of individuality, emphasizing the variability, stability, and centrality of the individual.

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INTRODUCTION The health care environment is currently changing to meet technology and societal trends which converge to bring into being new communication patterns that connect and coordinate the roles of healthcare stakeholders. At the same time, the healthcare industry is steering inexorably toward a distributed service design in which essential decision-making occurs at the point of care. One of the central engines of this shift towards decentralization and reorientation of health care services is mobile healthcare (M-Health). M-Health describes the use of a broad range of telecommunication and multimedia technologies within the wireless care delivery design and can be broadly defined as the delivery of healthcare services via mobile communication devices. M-Health establishes healthcare communities in which every stakeDOI: 10.4018/978-1-6684-2414-8.ch034

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 The Science of Individuality and Tailored M-Health Communication

holder can participate. However, it disrupts the traditional service model where healthcare information, security and access is centrally managed, maintained and limited, transforming the healthcare sector and destroying components that are slow to adapt. M-Health interventions range from simple to complex applications and systems that remotely coordinate and actively manage patient care. In this context, it offers an elegant solution to the problem of accessing the right information within highly fluid, distributed organizations. Moreover, it removes geography and time as barriers to care by establishing connectivity with remote locations and remote workers, creates new points of contact with patients, and changes the frequency and intensity of health care delivery. It also establishes effective new treatment modalities like telehealth, remote patient monitoring, selfcare, and home health while it blurs the boundaries between professional medical advice and self-care. Overall, M-Health blends three bodies of knowledge: high technology, life sciences, and human factors. Additionally, four prevailing theories are explaining the formation of health attitudes, intentions, or behaviors (Weinstein, 1993): • • • •

The protection motivation theory. The health belief model. The theory of reasoned action. The subjective expected utility.

These theories share an underlying premise. Health intentions arise to avoid potential adverse outcomes through cognitive assessment and include a cost-benefit component. However, existing studies have largely ignored the role of various message tactics and individual characteristics, contrary to the protection motivation model (Rogers, 1985). Overall, health messages accommodate risk information in different formats (Keller, 2006): • • •

To increase perceptions of vulnerability. To include action steps. To provide comparative information to increase intentions.

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By the same token, tailoring is a multi‐dimensional communication strategy that involves the development of individualized messages that are based on the pre‐assessment of critical variables or characteristics that are linked to the underlying model of behavior change. Several studies have found that tailored health messages demand greater attention for the following reasons: • • •

They are processed more intently. They contain less redundant information. They are perceived more positively by health consumers.

Specifically, the Elaboration Likelihood Model suggests that personal information enhances the strength of motivation and sensitivity to the argument, forcing the individual to expound on the message. Moreover, if the argument is forceful to senses, personal pertinence increases the probability for persuasion. Thus, tailoring creates an ideal environment for persuasion and health behavior change. Studies of tailored communication are exploding in an array of disciplines. In health education, studies have shown that tailored print materials are generally more effective than non-tailored ones (Prochaska et al., 1993; 636

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 The Science of Individuality and Tailored M-Health Communication

Campbell et al., 1994; Skinner et al., 1994; Strecher et al., 1994; Kreuter and Strecher, 1996; Brug et al., 1996, 1998; Brennan et al., 1998; Bull & Jamrozik, 1998; Dijkstra et al., 1998a,b; Marcus et al., 1998). Computing technologies have considerably contributed to the sophistication of tailoring as they can facilitate theory‐based assessment of tailoring. Web‐based tailored interventions have multiple advantages over single-mode, static interventions: • • • •

Abounding access probability to expert care and feedback. Capability to switch between modalities and formats of different learning styles and literacy levels. Asynchronous and synchronous communication. A vast array of interactive components to strengthen user experiences and support skills development, behavior/goal monitoring, and progress tracking.

The objective of the chapter is to envision tailored M-Health communication in the context of the science of individuality, emphasizing the variability, stability and centrality of the individual.

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BACKGROUND Internet Health Coalition (2000) defines health information as ‘the information for staying well, preventing and managing disease and making other decisions related to health and health care.’ Bates (2009) states ‘information behavior is the currently preferred term used to describe the many ways in which human beings interact with information.’ It is also the concept used in information studies to refer to a sub-discipline that engages in research conducted to understand the human relationship to information. Wilson (2000) defines information behavior as ‘the totality of human behavior relating to sources and channels of information, including both active and passive information seeking and information use. Thus, information behavior involves face-to-face communication with others, as well as the passive reception of information. Pettigrew et al. (2001) point out that information behavior phenomena are part of the human communicative process. Furthermore, Savolainen (2008) has introduced information practice as a co-ordinate concept for the information behavior. He considers that both concepts refer to how individuals deal with information, but from somewhat different perspectives. Derr (1983) states that information may be needed without being desired while Chatman and Pendleton (1995) separate information need and information want. The concept of ‘desire for information’ is also used to describe the amount (and frequency) an individual would like to have information (Fourie, 2008). In other words, information could be important in an individual´s life, but yet that person may have no interest in gaining it. According to Fidel (2012), information needs can be unconscious, but information wants (or desire for information) can usually be put into words by the individual. Information seeking is assumed to be an essential element in decision-making and health outcomes (Johnson, Andrews & Allard, 2001; Rimer et al., 2004). Human information behavior research has recognized information seeking as the central form of interaction that individuals employ to get information (Fidel, 2012). It can be active or passive. Active information seeking has been defined as ‘the purposive seeking for information as a consequence of a need to satisfy some goal’ (Wilson, 2000). Information searching is seen as a narrower and more focused concept while information use is a poorly defined concept linked to the information need (Wilson, 1999). According to Cole and Leide (2006) information use is a process in which an environmental stimulus, which includes stimuli obtained 637

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 The Science of Individuality and Tailored M-Health Communication

from reading, viewing, and listening activities, modifies the user´s knowledge structure. Wilson (2000) states that information use behavior ‘consists of the physical and mental acts involved in incorporating the information found in the person’s existing knowledge base.’ Information is interpreted and internalized by the individual in order to construct knowledge, and this knowledge may result in further action (Savolainen, 2008). The concept of ‘information reception’ has been used to define the first stages of the information use process. The stages include noticing, filtering, evaluating, and comparing the content of the obtained information (Nahl & Bilal, 2007). In information studies, in addition to the cognitive viewpoint, information use has been considered from the constructivist and socio-constructivist viewpoints (Talja et al., 2005). These viewpoints have a lot in common as they all present information use as processes occurring within the human mind. They share the assumptions that a human being is an information processor. Moreover, comparing and interpreting qualities of things is fundamental to the information use process and that the reception of information is mediated by an individual´s existing state of knowledge. (Savolainen, 2009; Talja et al., 2005). Health behavior has been studied by several social cognition theories and models that are widely used in health promotion. Many of these theories or models can be defined as statements about causal relationships between individual-level factors (such as knowledge, attitudes, motivation, sociodemographic factors, personality) and health behavior change. For health providers, they provide conceptual frameworks for developing effective health promotion programs, campaigns, and interventions (Campbell & Quintiliani, 2006; Schwarzer, 2008). Their theoretical constructs help in analyzing behavioral health problems and are also used as a basis to tailor health information and messages (Kreuter et al., 1999). However, no single theory or model can account for all complexities of behavior change, and therefore theories and models should be seen as complementary rather than competing. Social cognition models have been divided into:

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• • • •

Motivational models. Behavioral enaction models. Multistage models of behavior change. Health Action Process Approach (HAPA) by Schwarzer (2008).

Motivational models imply that motivation is sufficient for successful behavioral enaction. Behavioral enaction models focus on bridging the ‘gap’ between motivation, intention and behavior. Stage-based health behavior change models propose that behavior change is a non-continuous process occurring through stages. Each stage refers to differing individual barriers. In this context, the transtheoretical model of behavior change (TTM) argues that individuals move through a series of five stages of change. According to this model, when adopting a particular health behavior, an individual can be at one of five stages: • • • •

Precontemplation. Contemplation. Preparation. Action or maintenance.

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 The Science of Individuality and Tailored M-Health Communication

People in action or maintenance stages may also relapse and then recycle between stages. It has been stated that different kinds of information, messages and support are needed for people in different stages of change (Rimer & Kreuter, 2006). The TTM also includes other theoretical constructs. They can be used to explain what motivates an individual to progress through the stages of change toward a healthy change in behavior. Self-efficacy is one of the significant incentives of whether a person will progress through the stages. Self-efficacy originates from the Social Cognitive Theory and is defined as the confidence in individual abilities to overcome barriers and adopt a particular behavior (Toscos & Connelly, 2010). It can be seen as situation specific, but it has also been conceptualized as a stable, trait-like disposition (Contrada & Goyal, 2004). According to Bandura (2006), it is not a global trait but a differentiated set of self-beliefs. Increasing awareness and enhancing intentions are significant predictors of health behavior and included in many behavioral change theories and models. Individuals are often unaware of their risk behavior, making it unlikely that they would consider a behavioral change. Awareness of the relationship between behavior and outcome may also be significant, especially in earlier stages of behavioral change (Brug et al., 1994). Behavioral intentions are defined as ‘plans individuals have about whether or not they intend to perform the recommended behavior’ (Murray-Johnson & Witte, 2003). However, a definite intention may not be enough for behavioral change (Sheeran, 2005; Webb & Sheeran, 2006), especially for complex, habitual behaviors. Such behaviors depend very much on personal abilities and environmental opportunities (Brug, Oenema & Ferreira, 2005). Likewise, health communication can be partly responsible for all aspects of disease prevention and health promotion. It has been defined as ‘the crafting and delivery of messages and strategies, based on consumer research, to promote the health of individuals and communities’ (Roper, 1993). In health communication, health information or messages can be delivered to a general audience or segmented, targeted audiences (Evans, 2006). Traditionally, health promotion materials have been generic (Kreuter et al., 1999; Johnson & Case, 2012). In generic mass media, communication materials are intended to appeal to a large group of people (Brug, Oenema & Campbell, 2003). A relatively large undifferentiated audience receives identical information content (Kreuter & Wray, 2003). In many cases, as much information as possible is provided, and individuals need to find the relevant information on their own. However, it is likely that only individuals, who are already motivated, are willing to search through lengthy brochures for information that applies to their situation (Brug et al., 2003). Although health information is widely available, appropriate information suited to particular individual needs cannot often be found (Williamson, 2005). However, people do not always access or obtain information that could be beneficial to them (Chatman & Pendleton, 1995). One reason for this could be that the individual´s information needs can be unconscious, and thus they are not aware of them (Fourie, 2008; Case, 2012). In addition, individuals do not always know how to express their information needs (Fourie, 2008). Moreover, other psychological and cognitive barriers can inhibit the recognition of information need (Johnson, Andrews & Allard, 2001). Overall, it has been concluded that general health communication is not sufficient to meet the information needs of individuals (Docherty et al., 2008). In this context, progress in technology has led to a tailored approach to health communication. It involves soliciting information from individuals or querying information about individuals from existing records. It is consequential because it combines the potential for delivering cost-effective health communications to reach an enormous audience combined with the benefits of interpersonal communication. The reason is that communications that are tailored to 639

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 The Science of Individuality and Tailored M-Health Communication

be responsive to the solicited information can be used to imitate the transactional and response-dependent qualities of interpersonal communication. An interactive cycle of tailored feedback and response can be repeated to assist in motivating health behavior change. Along the way, both source and message factors can be dynamically modified to realize the advantages inherent in interpersonal channels, advantages proven essential for persuading individuals to change their health behavior. This approach, known as tailoring, has been defined as any combination of information or change strategies intended to reach one specific person. This definition highlights the two features of a tailored approach that distinguishes it from other approaches: • •

The collection of messages is intended for a particular person. The messages are based on individual-level factors.

The rationale for a tailored approach is grounded in the theory that explains how people process information. Petty and Cacioppo’s (1986) Elaboration Likelihood Model (ELM) provides a method of understanding this process. They have proposed the central and peripheral routes to attitude formation and change. The central route involves a cognitive component and necessitates effort on the part of the individual. Studies have shown that messages processed via the central route lead to more firmly held beliefs and attitudes and result in lasting attitude change. It is, therefore, considered to be more effective in changing attitudes than general information. Subsequently, the theory suggests the following rationale for a tailored approach: • • • •

By tailoring materials, superfluous information is eliminated. The remaining information is more personally relevant to the message recipient. The message recipient will pay more attention to the information if it is personally relevant. The unshared needs of a person will be useful in enacting and sustaining the desired behavior change

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Tailoring enhances cognitive conditions for information processing and acceptance. A common aim of tailoring merely is to increase attention and comprehension. Apparently, attention to information is a prerequisite for the information to have any impact. Attention is gained by communicating to the information receiver that the information addresses his or her preferences and needs (Hawkins et al., 2008). Rimer and Kreuter (2006) argue that at least four approaches to tailoring can be used to enhance health communication. The approaches are as follows: • • • •

Matching content to information needs and interests. Providing information in a meaningful context. Using design, production and channel elements to capture attention and enhance message processing. Presenting the requested information.

In conclusion, tailoring of health information is a means to overcome the problems related to the provision of general health information. It attempts to provide carefully selected information suitable for an individual and consequently may lower or remove psychological or cognitive barriers to information use and decision-making. It makes easier for the receiver to interpret, understand and trust information 640

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 The Science of Individuality and Tailored M-Health Communication

(Te´eni, 2001) while increasing the perceived personal relevance of health information. Consequently, it helps engage individuals and create ideal conditions for persuasion and attitude or behavior change to occur (Lustria et al., 2009). Furthermore, tailoring and targeting are not discrete categories of communication, but overlapping segments of the continua (Hawkins et al., 2008). They combine the benefits of interpersonal communication and mass media (Evans, 2006). Tailoring imitates and automates the process of person-to-person counselling by providing more customized information than the mass media. Similarly, targeted communication is intended to reach some population subgroup based on characteristics presumed to be shared by the group’s members Despite these fundamental differences between tailoring and targeting, the rationale for both approaches is quite similar. The more one knows about the intended recipients of communication; the better able one will be to make the message relevant to them. There are, however, situations in which each approach would seem to have an advantage over the other. Tailored health messages should have an advantage over targeted messages when there is significant variability within the target audience. Finally, because tailoring is a form of data-based communication, it should only be considered as a message strategy when a mechanism exists for gathering or accessing information from the target population on the critical determinants of change. That is one reason that tailoring has been applied so often in health care settings. Individual-level data are already routinely gathered there; tailoring assessments can be integrated or added to existing structures without disrupting practice norms or patient expectations.

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THE SCIENCE OF INDIVIDUALITY AND TAILORED M-HEALTH COMMUNICATION Unquestionably, m-health communication requires extensive data, which currently flows from the beneficiaries towards data centers. Such data include a multitude of health and well-being information collected manually or automatically. Moreover, algorithms are required to process such information and alert when health-related actions should be taken. On the other hand, nowadays, there are technologies which provide both the data storage and processing capacity while the mobile device (especially the mobile phone), as well as inter-connectable devices (health gadgets), may serve as data acquisition points on the individual level. However, there is a significant deficiency of contemporary medicine which is reflected by the use of experts to make recommendations or guidelines for a significant proportion of decisions for which no or minimal data exists. These guidelines are published in major specialty journals which have a pronounced impact, as they are believed to represent the standard of care. Overall, there is too much literature which is evidenced by the statistic that only 0.5 per cent of the 38 million published papers are cited more than two hundred times, and half were never cited. Moreover, when pooled analyses of prior studies are published, many relevant papers are excluded (Topol, 2012). In fact, this should be considered ‘eminence-based medicine.’ (Topol, 2012). Better studies might be part of the solution. However, as we can accrue more meaningful data and information for individuals, the hope is that we can override our dependence on such recommendations. We need evidence which is built not on populations but individuals. Fortunately, our capacity to get just that information is rapidly arising. An era which is characterized by the right drug and dose, at the right cost and timing has begun (Topol, 2012). Medicine for the 641

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 The Science of Individuality and Tailored M-Health Communication

common good is not sufficient. Α rebooted life science, instead of a mass-population-directed strategy, would leverage the science of individuality, getting the relevant digital readout from an individual to shape a therapy. We now, for the first time, have the devices to promote a level of prescription precision we have never seen before (Topol, 2012). The era of individualized medicine ultimately promises to do away with terms like ‘cryptogenic’ and ‘essential,’ fully recognizing the uniqueness of the individual who needs to be seen and treated with utter respect for his or her individuality. It will not be long until digitizing a person unlocks the cause for what is wrong, creating valuable knowledge that can save a life or markedly improve the quality of life. That is a major outgrowth of the science of individuality. In this context, the entire classification system of medical conditions and diagnoses is about to be rewritten. Instead of our current reductionist model for which individuals are unwisely assigned to such categories as one of two types of diabetes or cancer of a particular organ, the science of individuality will promote a new molecular taxonomy that invokes the main biologic basis, regarding genes or pathways. On the other hand, communication has always been a fundamental component of effective health care and health promotion. In this context, throughout the last decade, tailoring systems have been developed for an extensive variety of applications providing information for: • •

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•

Patients at significant risk of developing chronic conditions. Patients who already have chronic conditions such as migraines, asthma, and diabetes that require long-term continuing treatment. Patients undergoing more short-term intensive treatment such as for cancer.

The goal of these systems has also been diverse, supporting the patient’s role, health promotion advice, and behavior change interventions. However, improvement of ICT and mobile health has increased the potential for tailored communication (Rimer & Kreuter 2006). Computer automation allows for the rapid processing of individual responses and matches individuals´ answers to individually tailored messages (Kreuter et al., 1999; Noar et al., 2011). In this kind of computer-generated tailored communication (also called computer-tailoring), the combined expertise of health promoters is translated into a computer expert system (Dijkstra & De Vries, 1999). Content knowledge is needed both to determine the correct information for different kinds of individuals and to devise the decision rules on which the computer program is based (Brug, Campbell &Assema, 1999). Moreover, tailoring can be static or dynamic. In static tailoring, one baseline assessment is provided on which all tailored information is based. In dynamic tailoring, the assessment is repeated before providing pieces of tailored information or feedback (Krebs, Prochaska & Rossi, 2010). Computer-generated tailored information can be delivered via various channels. Channel selection can be guided by audience preferences and campaign goals. Tailored information can be delivered via: • • • • • •

Print. Telephone call. Face to face. Mobile phone text message. CD-ROM. Computer kiosk.

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 The Science of Individuality and Tailored M-Health Communication

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•

The Internet.

Computer-tailored but print-delivered interventions are deemed the ‘first generation’; interventions using interactive media are deemed the ‘second generation’ of tailored health communication (Oenema, Brug & Lechner, 2001). The ‘third generation’ interventions refer to interventions delivered via mobile and remote devices such as mobile phones and handheld computers (Norman et al., 2007). Information and communication technologies (ICT) such as the Internet and mobile phones provide new opportunities for the delivery of innovative interventions (Pratt et al., 2012). Health behavior change programs and campaigns delivered via the Internet have become increasingly popular for the promotion of lifestyle-related health behaviors (Kroeze, Werkman & Brug, 2006). Availability, transferability, relatively small cost, and customization are some of the benefits of selecting web-based programs and campaigns as well as a perception of anonymity, which may be appealing to reluctant or self-conscious participants. In addition, Web-based health behavior programs and campaigns appear to be cost-effective (Norman et al., 2007; Tate et al., 2009; Webb et al., 2010). The Internet is increasingly used by private and public healthcare organizations in their communications and information transfer (Eng, 2002). The concept of eHealth involves the use of ICT to improve health in general and the healthcare system in particular (Eysenbach, 2001; Chau & Hu, 2004). Furthermore, mobile health (mHealth) is thought to be the next step in computerized health interventions (Riley et al., 2011). The research on health behavior change has also led to the development of technologies supporting behavior changes (Consolvo et al., 2006; Nawyn et al., 2006). These so-called persuasive technologies (Fogg, 2003) embed motivational strategies into everyday electronic devices to encourage and sustain long-term health behavior changes. They attempt to shape, reinforce or change behaviors, attitudes, feelings or thoughts about an issue, object or action (Berkovsky et al., 2012). According to Oinas-Kukkonen (2013) behavior change support systems are the primary focus of research in the area of persuasive technologies (Lehto, 2013). A fundamental challenge in persuasion is that the target audiences are large and heterogeneous including users with wide-ranging goals, needs and preferences (Berkovsky et al., 2012). The solutions for this can be the targeting and tailoring of health communication. (Noar et al., 2009). In addition, tailored health behavior change programs usually refer to computer-tailored programs commonly delivered by a computer or the Internet (Suggs et al., 2006). In a tailored program, for instance, tools for building self-regulatory skills can be combined with tailored health feedback messages (Lustria et al., 2009). Goal setting and action planning (Brug et al., 2005) or observational learning, providing role models, supporting emotional coping and allowing reinforcement by virtual rewards (Toscos & Connolly, 2010), can help to bridge the information behavior gap. Other projects around the world are using natural language generation techniques that allow more interactivity. Interactivity is defined as the capability of new communication systems to ‘talk back’ to the user as do individuals participating in a conversation (Rogers, 1986). Although there is interest in producing tailoring systems that enable enhanced interactivity, few studies have been able to demonstrate the effectiveness of health behavior. Cawsey, Grasso & Jones (1999) developed a nutritional tailoring system based on a dialog with the user. The users receive suggestions for improving the meal after making some meal choices. They can answer back to each tip in various ways, asserting objections or rejecting it outright. Another example is the Patient Education and Activation System (PEAS) project, which was designed to prepare individuals to take an active role in health care decisions (McRoy & LiuPerez, 1998).The project investigated strategies for helping people to identify their health care concerns.

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 The Science of Individuality and Tailored M-Health Communication

These strategies combine a multimodal computer interface with intelligent tutoring and intelligent discourse processing. As PEAS interacts with a patient, it varies the content and pace of the interaction and suggests relevant learning activities. Because of the restraints of existing tools and techniques, several of the most experimental projects attempt to use more sophisticated techniques, taking ideas from information technology and using Natural Language Generation (NLG) methods (Reiter & Sripanda, 2003). The basic idea behind most of these systems is to: • • •

Represent explicit information about the patient. Represent general rules about communication. Generate text from a database of health-related information.

Achieving this, with only limited knowledge of how humans tailor their communications has proven to be very difficult. In practice, however, even these systems have lacked access to a knowledge base that contains fundamental determinants of the selected behavior. As a result, NLG approaches that incorporate tailoring on health behavior determinants have been limited. More frequently the tailoring systems are developed using NLG. Consequently, they embrace the understanding that the same semantic information can be conveyed through text and sentence structures. A multi-argument formation, which is critical to expanding communications in health behavior change, embodies two types of knowledge acquisition (KA) techniques:

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• •

Working with experts in a structured fashion, think-aloud protocols, sorting and laddered grids. Learning from data sets of correct solutions.

In this light, a new conceptual framework is needed to broaden the scope and boundaries of tailored communications research in the era of the science of individuality. The traditional communications model consists of a source, a message, a channel of delivery, a receiver, and an effect on the receiver. Anything that impedes message transfer through the channel is considered ‘noise’. This basic model, developed before the science of individuality, could not anticipate the new tools that are now available. Ideally, both sender and receiver continually adapt their presentations until both are satisfied that knowledge has been appropriately transferred. As computers become faster, multimedia, interactive communications are now also possible, using sophisticated expert systems and inference engines to reduce ‘noise’. Virtual reality can help individuals ‘pre-live’ the future consequences of their decisions and explore the effect of their lifestyle choices on their biology and social and emotional well-being. Palmtop computers and personal organizers make it possible to provide ‘on demand’ information in ‘real time’. The concept of a computer ‘coach’ that is available on demand is rapidly becoming a reality.

ISSUES, CONTROVERSIES, PROBLEMS The most significant barriers to information use and information reception are psychological and cognitive. For instance, an individual may feel bombarded with too much information. This kind of situation is called information overload, and it may lead to information avoidance (Case, 2012). Information overload is directly related to information use because the experience of information overload affects the 644

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 The Science of Individuality and Tailored M-Health Communication

way in which information sources are selected or rejected. According to Savolainen (2008), there is no consensus among researchers about the definition of information overload and whether the phenomenon exists. Eysenbach (2003) states ‘individuals who are exposed to excessive information may make poor health decisions that can potentially have harmful effects on outcomes.’ Additionally, the terminology used in health information may be complicated and presented in a way that the information receiver does not understand (Docherty et al., 2008; Fourie, 2008). Coping with differences between ‘lay language’ and professional terminology can be a barrier to information use and decision-making (McKenzie, 2002; Brennan & Safran, 2005; Eriksson-Backa, 2008). Thus, one way to avoid the experience of information overload or avoidance is to become information literate. The Medical Library Association (2003) defines health information literacy as a ‘set of abilities needed to: recognize a health information need; identify information sources and use them to retrieve relevant information; assess the quality of the information and its applicability to a particular situation; and analyze, understand, and use the information to make good health decisions’. On the other hand, no studies to date have directly compared tailored and targeted approaches to health communication. One particular area of inquiry would be to test the variability of the principal determinants of the intended outcome. More variability on the key determinants of some expected outcome is associated with the tailored messages being superior to targeted messages. Such studies would provide valuable information contributing to greater evidence-based practice in health communication. However, analysis elucidated that well-suited non-tailored materials can function as well or better than tailored materials. At the same time, moderate and poor-fitting non-tailored materials were usually subordinate to both approaches. These findings suggest two critical points. First, there is considerable variation in the effectiveness of any single communication approach. Second, current tailored print communications may be no more effective than generic materials that are well matched to a particular person. Nevertheless, the art of creating tailored health communication is still evolving. The tailored print materials tested to date probably lie in the middle of a continuum from entirely generic to perfectly tailored health communication. However, enhanced tailored communication addresses not only behavioral constructs from a few selected theories of health behavior change but also factors such as:

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• • • • •

Learning style. Preferred media. Cultural norms and values. Need for cognition. Use of emotional versus cognitive appeals.

As a result, research on tailored health communication should identify and test new types of tailoring variables that could improve behavior change and health messages. Moreover, studies of tailored content matching have compared a group of targeted communication with the experimental group. In effect, the designs tested if tailoring is more efficient than little or no segmentation and customization. In this context, research questions should focus on the attributes of tailoring: • •

The cognitive and behavioral determinant goals. The strategies to achieve them.

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 The Science of Individuality and Tailored M-Health Communication

One obvious way to approach such designs is the presence versus absence of specific attributes, but many creative alternatives are also possible. Beyond this, research should also address the circumstances different tailoring tactics elicit different results. It is also necessary to compare specific tailoring strategies and tactics. One method is a dismantling design. Another approach, the parametric or ‘dosing’ model, examines the effects of the same tailoring strategy but various intensities. Third, individual tailoring strategies may be added to those with some degree of tailoring. Finally, because segmentation and customization rely on information about individuals, individualbased assessments are considered to be indispensable to tailored interventions. However, such assessments can have an independent impact on behavior.

SOLUTIONS AND RECOMMENDATIONS

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Tailored communications can come in an unlimited number of forms, including tailored telephone counselling and voice response systems. As the information superhighway evolves, the World Wide Web will bring accessibility to interactive multimedia intervention technologies. Given such rapid technological advances, tailored communications may now reduce ‘noise’ by gathering detailed personal information for input at the source and then presenting appropriate messages through the channel. Computer-based delivery options can simulate a conversation by tailoring information, in real time, based on user responses. The potential for rapid feedback in real time provides the capability to modify subsequent messages and/or deliver repeated communications. Such factors offer qualitative advances in the communication model of the 1960s. As a result, the theoretical models of the future must continuously evolve to keep pace with new technologies. Theories of behavior change must also guide tailored message algorithms. In the last 30 years, Social Cognitive Theory has served as an overarching theoretical framework; one that has identified specific mediating mechanisms that lead to behavior change. Related models emphasize different potential mediating mechanisms that are thought to be most relevant to creating tailored communications (Glanz et al., 1997). They range from the Health Belief Model, the Theory of Reasoned Action, and the Transtheoretical Stages of Change Model to more recent theories of risk perception such as the Precaution Adoption Model (Weinstein, 1993). Research can help identify what specific mediating mechanisms and processes are best targeted to enhance tailored message effects. Such variables include: • • • • • •

Intrinsic versus extrinsic motivation. Emotional blunting versus monitoring. Availability and type of coping responses. Self-efficacy expectations. Variety of proximal and distal outcome expectations. Appraisal of the decisional balance between the advantages and disadvantages of changing behavior.

Neural nets and intelligence technologies blur the boundaries between computer learning algorithms and the human brain. Intelligence research can inform tailored communications research and vice versa. Current advanced tailoring technology uses deductive and inductive inferencing systems to generate 646

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 The Science of Individuality and Tailored M-Health Communication

new data points based on an individual’s profile information. Artificial intelligence applications, such as heuristics and neural networks hold much promise for generating tailored content from generic content and for modifying intervention curricula and presentation based on individual case observations. Moreover, the particular neurobiological substrate determines the parameters and limits of the tailored communications. Basic mechanisms might include individual differences in speed of information processing and preferences regarding modes of message delivery. Research on risk perception and optimistic versus pessimistic bias can further contribute to improving understanding of how to present information to patients and what questions to ask. In the final analysis, the impact of computer and provider delivered tailored messages may also hinge on the receiver’s perceptions of self-efficacy, outcome expectations, and feelings of empowerment. Depending upon how messages are framed, receivers may feel more or less empowered and more or less self-confident. As a result, we need to understand more about how computer versus human experts influence the receiver’s perceptions of empowerment and self-efficacy. Within Anderson’s (1998) interdisciplinary biopsychosocial framework, the interface between biobehavioral and biosocial disciplines is particularly relevant for advancing theory and guiding research on the mediating mechanisms underlying tailored communications. Models of self-control or self- regulation, derived from Social Cognitive Theory, are at the heart of understanding behavior change for tailored communications. However, different biological, psychological, or social mechanisms underlie change for different target behaviors and populations. Prior research offers little specific guidance about how to bridge the gap between theory and application. The gap between theory and practice raises fundamental questions about how to define the boundaries and limits of tailoring in actual practice. That raises the issue of whether the principles of stepped care should be considered when designing future tailored interventions. A stepped-care model would first disseminate a relatively brief inexpensive and less sophisticated tailored intervention. Only the subset who failed to respond would then be stepped up. This type of model that combines stepped care with tailoring has been proposed to improve the cost-effectiveness. It provides a rational means of allocating finite resources to achieve the most significant population impact by reserving the more complicated and expensive interventions for a smaller group who have failed at all previous steps. Despite the intuitive appeal of stepped-care models to tailoring, it is also possible that a very inexpensive intervention produce little change. Very little research to date has addressed these issues. Ultimately, future research should provide information relevant to the costs of tailoring per incremental increase in the outcome and population impact. It should also shed light on linking such gains to measures of quality-adjusted life years saved. Cost-effectiveness and cost-benefit information are critical for informing health policy and convincing payers to consider investing in tailored message technologies over other ideas within their budget allocations. In summary, traditional communication theories need to be expanded, or new ones developed. Bridges must be built between communication and behavior change theory. Standardization of language, models, mechanisms, and measures is needed to advance the field, producing unique additions to outcome variance. More research must focus on how to define and identify the mediators that optimize the impact of tailored communications. Variables that cut across biopsychosocial domains should be incorporated into a single model or theory of tailored communications. Future research on theory and mechanisms should conduct a more prospective process to outcome evaluations of causal pathways and examine the predictive and incremental value of new variables and mechanisms over and above existing ones. A broader theoretical model must also incorporate other disciplines and bodies of knowledge beyond those listed 647

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 The Science of Individuality and Tailored M-Health Communication

above. Some of the significant factors in developing a credible and trusting relationship among humans is the consistency of responses over time. Finally, a fundamental issue that deserves more attention is who should receive tailored messages.

FUTURE RESEARCH DIRECTIONS It is complicated to employ persuasive argumentation theories to behavioral change communication. Moreover, research in argumentation has been concerned only with the structure of single arguments. Likewise, NLG systems do not explore the planning mechanisms that would account for the generation of text. One also needs a theory that would describe (Ajzen, 1991): • •

How arguments could be put together. Why particular multi-argument structures are more persuasive.

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Some of the computational tailoring systems have attempted to combine theories of argumentation with behavioral theories. They realized that if an intervention aims to induce people to modify their behavior, particular theories of the advising process are necessary. These interventions have used Stages of Change and the Health Belief Model (Grasso, 1998). However, all of these systems have been difficult to move into real-world environments primarily because of the entanglement of using NLG techniques to generate multi-argument structures in domains as complex as health behavior. In addition, little is known in the reusable NLG resources while the nonlinguistic tailoring approach has other limitations. It is possible that the integration of both the nonlinguistic tailoring approach and computer science methods is essential for the development of tailored messages. To design a system whose ultimate aim is to try influencing the user’s behavior, very diverse sources of knowledge have to be integrated. Theories of argumentation and persuasive structure are perhaps what is needed to build on and extend current tailoring research. In addition, additional types of tailoring variables should be tested. Theory must adopt the most parsimonious strategies without omitting essential mechanisms. That will require the adoption of a common language and standard measures for the underlying mechanism and processes. For the unification of the more sophisticated technologies, theory, and real-world applications, joint research is needed. As such, it remains to be seen whether the advances of the tailoring process will deliver the tailored health communication approaches sufficient to engineer an impact on: • • •

Improved decision-making. Patient health behavior. Chronic disease management.

CONCLUSION Robinson et al. (1998) cautioned that health communications applications hold great promise but can cause harm. They encouraged health care providers to speed the advancement of knowledge and evaluate its safety, quality, and utility. They also proposed a standardized reporting template to: 648

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 The Science of Individuality and Tailored M-Health Communication

• • •

Guide developers and evaluators. Conduct evaluations. Help clinicians, purchasers, and consumers judge their quality, efficacy, and efficiency of disclosed results.

Of critical importance is the need for research on implementation to elucidate the mechanisms for cost-effective diffusion of tailored interventions to populations. Safeguards must also ensure confidentiality and ethical standards to protect consumers. Finally, theory and applications are lagging behind the rapid pace of technological advances. Standardization of language, research designs, methods, and measures are crucial along with developing broader interdisciplinary conceptual models. The gap between technology, theory, and application can be closed by: • • •

Providing opportunities for basic research into the fundamental mechanisms of tailored communications. Broadening theories of behavior change for tailored communications research. Enhancing message effectiveness and practical impact on outcomes.

It remains to be seen whether the revolution in the science of individuality and m-health will provide the tools to engineer sufficient impact on tailored communication.

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 The Science of Individuality and Tailored M-Health Communication

Sheeran, P. (2005). Intention–Behavior Relations: A Conceptual and Empirical Review. In W. Stroebe & M. Hewstone (Eds.), European Review of Social Psychology. Chichester, UK: John Wiley & Sons. doi:10.1002/0470013478.ch1 Skinner, C. S., Strecher, V. J., & Hospers, H. (1994). Physician recommendations for mammography: Do tailored messages make a difference? American Journal of Public Health, 84(1), 43–49. doi:10.2105/ AJPH.84.1.43 PMID:8279610 Strecher, V. J., Kreuter, M. W., Den Boer, D.-J., Kobrin, S., Hospers, H. J., & Skinner, C. S. (1994). The effects of computer-tailored smoking cessation messages in family practice settings. The Journal of Family Practice, 39, 262–270. PMID:8077905 Suggs, L. S., Cowdery, J. E., & Carroll, J. B. (2006). Tailored program evaluation: Past, present, future. Evaluation and Program Planning, 29(4), 426–432. doi:10.1016/j.evalprogplan.2006.08.003 PMID:17950872 Talja, S., Tuominen, K., & Savolainen, R. (2005). Isms in information science: Constructivism, collectivism and constructionism. The Journal of Documentation, 61(1), 70–101. doi:10.1108/00220410510578023 Tate, D. F., Finkelstein, E. A., Khavjou, O., & Gustafson, A. (2009). Cost effectiveness of Internet interventions: Review and recommendations. Annals of Behavioral Medicine, 38(1), 40–45. doi:10.100712160009-9131-6 PMID:19834778 Te’eni, D. (2001). Review: A cognitive-affective model of organizational communication for designing IT. MIS Quaterly, 25(2), 251–312. doi:10.2307/3250931 Topol, E. J. (2012). The creative destruction of medicine: how the digital revolution will create better health care. New York: Basic Books. Toscos, T., & Connelly, K. (2010). Using behavior change theory to understand and guide technological interventions. In B. M. Hayes & A. William (Eds.), Health Informatics: A patient-centered approach to diabetes (pp. 295–326). Cambridge, MA: MIT Press. doi:10.7551/mitpress/9780262014328.003.0011

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Webb, T. L., Joseph, J., Yardley, L., & Michie, S. (2010). Using the Internet to promote health behavior change: A systematic review and meta-analysis of the impact of theoretical basis, use of behavior change techniques, and mode of delivery on efficacy. Journal of Medical Internet Research, 12(1), e4. doi:10.2196/jmir.1376 PMID:20164043 Webb, T. L., & Sheeran, P. (2006). Does change behavioral intentions engender behavior change? A meta-analysis of the experimental evidence. Psychological Bulletin, 132(2), 249–268. doi:10.1037/00332909.132.2.249 PMID:16536643 Weinstein, N. D. (1993). Testing four competing theories of health-protective behavior. Health Psychology, 12(4), 324–333. doi:10.1037/0278-6133.12.4.324 PMID:8404807 Williamson, K. (2005). Where one size does not fit all: Understanding the needs of potential users of a portal to breast cancer knowledge online. Journal of Health Communication: International Perspectives, 10(6), 567–580. doi:10.1080/10810730500228961 PMID:16203634

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 The Science of Individuality and Tailored M-Health Communication

Wilson, T. D. (1999). Models in information behaviour research. The Journal of Documentation, 55(3), 249–270. doi:10.1108/EUM0000000007145 Wilson, T. D. (2000). Human information behavior. Information Science Research, 3(2), 49–55.

KEY TERMS AND DEFINITIONS Health Behavior: Behavior directed at promoting, protecting and maintaining health. Health Communication: Informing, influencing, and motivating about important health issues. Health Information: Information for staying well, preventing and managing disease, and making other decisions related to health and healthcare. M-Health: It describes the use of a broad range of telecommunication and multimedia technologies within wireless care delivery design and can be broadly defined as the delivery of healthcare services via mobile communication devices. Science of Individuality: The science which acknowledges that each human needs to be seen and treated with utter respect for his or her individuality. Tailored Health Communication: Any combination of information strategies intended to reach an individual. Targeted Health Communication: It corresponds to a process appealing to a defined population subgroup.

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This research was previously published in Mobile Health Applications for Quality Healthcare Delivery; pages 213-234, copyright year 2019 by Medical Information Science Reference (an imprint of IGI Global).

656

Research Anthology on Improving Health Literacy Through Patient Communication and Mass Media, edited by Association, Information Resources Management, IGI Global, 2021. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/nyulibrary-ebooks/detail.action?docID=6686709. Created from nyulibrary-ebooks on 2021-09-02 06:30:41.

657

Index

A

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accelerated montage 108, 111, 119-120, 125 accessibility 306, 310, 312, 350, 353, 487, 489, 500, 520, 565, 577, 598, 612-613, 617, 619, 630-633, 646 African Caribbean Community 89 aging 89, 93, 274, 280, 288, 290, 292, 304, 308-309, 503 alternative treatments 424, 428, 435 Amyotrophic Lateral Sclerosis (ALS) 179 Asynchronous/ Computer Mediated Communication 369 Audience Engagement 498, 502, 504 Audio Podcasts 179 Audiovisual Communication 163 audiovisual strategies 108-109, 112, 114-116, 119120, 167 Australia 48, 67, 153, 175, 177, 223, 253, 269, 394, 414, 538-539, 541-548, 550, 552-553, 555 availability 37, 42, 177, 225, 237-238, 241, 245, 302303, 307, 321, 332, 375, 409, 420, 456, 501-502, 541, 547, 566, 612-613, 633, 643, 646 awareness 24-25, 28, 30, 37, 50-51, 53, 56, 61-62, 64-65, 67, 69-70, 80, 82, 93-95, 97, 102, 109, 127, 132-134, 138-139, 142, 146, 150, 153, 164165, 167-170, 172, 183, 185, 191, 193, 222, 257, 259, 261, 273, 281-283, 320, 370-371, 373-374, 383-385, 387-393, 421, 424, 428, 444, 455-456, 460, 466, 469-475, 477-482, 485-486, 488-489, 492-493, 529, 541, 551, 555, 573, 579, 589, 595, 610, 612, 615, 639

B Baby Boom Generation 289 behavior 5, 13-14, 37, 40, 42, 46, 87, 109-111, 132, 140-141, 159, 194-195, 222, 230, 233, 235-236, 240, 244, 246, 260-261, 282-284, 310, 319, 324, 327, 330, 340, 346, 348, 350, 356, 360-368, 370372, 374-375, 406, 413, 416, 438-439, 444-445,

447-452, 480-481, 486, 503, 508-509, 527-528, 531, 536-537, 552, 555, 565, 579, 582, 596, 600, 602, 607, 610, 635-656 behavior change 14, 37, 109-110, 140, 350, 365, 416, 610, 635-636, 638, 640-647, 649, 652-655 Blood Genotype 469 breast cancer patients 233, 418, 420-421, 431-433

C care prevention 588 change 4, 8-9, 13-14, 16, 24-25, 37-38, 40, 48-49, 57, 67, 70, 78, 80-83, 109-111, 125, 131-132, 134-135, 140, 171, 183, 185-187, 192-194, 204, 206-207, 209, 214, 220, 222-223, 239, 251, 256, 259, 275-276, 279-282, 299, 328, 331, 346, 350351, 357, 360, 365, 392, 416, 426, 428, 430, 433, 442, 459, 466-467, 470, 472-473, 480-482, 484-487, 490-491, 493-496, 498, 502, 515, 520, 528, 539, 559-561, 563-564, 573, 578-579, 588, 590-591, 593, 595, 602-603, 605, 610, 612, 617, 635-636, 638-655 chronic disease 2-3, 5, 8, 13, 224, 251, 267-268, 274277, 279-284, 286, 288, 291, 296, 300, 303, 306, 336, 347, 403, 415, 449, 526, 533, 552, 589, 596, 599, 605, 607, 648 chronic illnesses 2-3, 14, 102, 239, 255, 398 close-ups 108, 112, 119-120, 125 Code of the Street 511, 532, 536 Collaborative Multimedia Group Projects 127 communication 8, 11, 13, 15-16, 23-30, 32-51, 5355, 57-58, 63-64, 67-72, 77, 79, 82-83, 85-88, 93-94, 96, 105, 109, 114, 120-124, 133, 137, 140, 143-145, 147-150, 152-153, 155-159, 164165, 167, 169-173, 175-176, 178-179, 193-198, 210, 218-222, 224-236, 238, 240-252, 254-255, 257, 260, 263-265, 267-268, 293, 299, 303-306, 309-312, 317-331, 333-336, 338-340, 342-370, 379, 396-399, 401-403, 406, 413, 415, 419, 427,

Research Anthology on Improving Health Literacy Through Patient Communication and Mass Media, edited by Association, Information Resources Management, IGI Global, 2021. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/nyulibrary-ebooks/detail.action?docID=6686709. Created from nyulibrary-ebooks on 2021-09-02 06:30:41.

 

Index

431, 434-435, 437, 440-444, 447-456, 458-467, 469-470, 472, 477, 479, 484, 486-487, 489-490, 492-496, 501-503, 506, 508-509, 511-512, 515, 519-525, 529, 532, 535, 541-542, 544-545, 547, 549-551, 553-554, 556, 558-561, 564-566, 571, 575, 577-580, 582-583, 590, 595-596, 602, 604, 609, 612-615, 617, 619, 630-631, 634-637, 639649, 651-656 communication technique 50-51 Community Connectedness 329 computer-mediated communication 178, 250, 317, 320, 326-328, 352, 355-356, 359-360, 362-368, 434, 443, 450 consumer eHealth interventions 1-9 Consumer E-Health Interventions 1, 14 Consumer Health Informatics 289, 343, 650 consumer health technology 2, 289-292, 296, 299-300, 302, 304-305 consumer personalized medicine 236, 583 content analysis 108, 113-115, 143, 146, 156-157, 159, 165, 182-183, 187, 192-193, 195-196, 231, 233, 285, 307, 343-345, 347, 361, 363, 421-422, 450, 494, 543, 555 conventional media 469 cultural competency 2, 5-7, 14, 511

F

deep focus 108, 112, 119-120, 125 Development Communication 47-49, 68, 197 digital age 33, 39, 49, 126, 181, 219-220, 222, 237, 251-252, 264, 273, 330, 417, 487, 493 digital era 33, 36-37, 218, 414, 447 digital health 6, 11, 149, 233, 251, 266, 270, 414, 538540, 542-544, 546, 548, 550-551, 554, 556, 590, 595, 600, 603, 607, 609-610 digital healthcare 538-539, 546, 548-549, 557, 588, 595 digital literacy 1-3, 5, 8, 14, 135, 538, 548, 550, 588589, 609 Digital Market 259, 273 disease symptoms 108, 338, 375 diseases awareness 370-371, 373-374, 383-385, 387393

Facebook 30, 40, 127, 130-131, 133-135, 137-138, 169, 171-172, 175, 178, 180, 331-332, 334, 338, 340, 344-345, 362, 364, 368, 397-410, 412-413, 415-419, 421-423, 433-434, 437, 439, 442-443, 447-452, 463-465, 469-470, 476, 478, 481, 487489, 491-493, 496, 565 false-negative screening outcomes 377 family planning 58, 182-198, 200-201, 459-460 family-doctors-network 225 FEDER (Federación de Enfermedades Raras) 179 Feminism 70, 72, 78, 84, 88 film 108, 112-114, 121-123, 125, 132-133, 135, 137138, 140, 170 Framing 59, 87, 140, 157-158, 165, 173, 179, 182, 184, 186-187, 194-198, 444, 563 framing theory 165, 179, 186-187 fundamental education 251, 253-254, 267, 273 Fundemental Education 251

E

G

Ectodermal Dysplasia (ED) 179 Educational Nurse Intervention 288 Educational Nursing Intervention 274 eHealth 1-12, 220, 247, 307, 309-311, 349, 364, 449, 501, 503, 548, 609, 643, 653-654

gender 22, 40, 47, 49, 69-88, 90, 103, 365, 378, 419, 421, 423, 427, 431, 433, 448, 493, 528, 533, 550, 560, 566, 579-580, 582, 584, 617, 619, 630, 634 gender bias 70, 77-79, 82, 84-85, 88 gender inequity 70-72, 74, 76, 79, 82, 88

D

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e-Health 1, 14, 46, 231, 238, 242, 245, 306, 309-310, 312, 415, 498-504, 510, 536, 538-544, 546-550, 552, 556-557, 603, 651 e-Health literacy 548-549, 556 Einstein Medical Center Philadelphia (EMCP) 505-506 Electronic Health (E-Health) 498, 504 emotion 109, 111, 140, 146, 210, 428, 653 Emotional Empathy 418, 435 Emotional Empowerment 594, 610 emotional support 102, 169, 225, 228, 320-324, 328, 335, 337, 340, 351, 353-354, 361, 366, 368-369, 403, 412-413, 420, 435 empowerment 1, 4, 8, 13-14, 47, 91, 93, 96, 104, 173, 178, 220-221, 228-229, 232, 235, 237-239, 241-242, 245, 274, 276-277, 283, 285, 288, 312, 337-338, 340, 342-343, 347-348, 360, 364, 372373, 380, 393, 397, 421, 434, 447, 506, 537-539, 542-544, 547-550, 562, 588-595, 602-610, 647 E-nabız 612-613, 618-621, 629-632, 634 ethnographic analysis 418, 421 ethnography 514, 532-533, 536, 560, 562, 606 expressive writing 322-325, 327

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Research Anthology on Improving Health Literacy Through Patient Communication and Mass Media, edited by Association, Information Resources Management, IGI Global, 2021. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/nyulibrary-ebooks/detail.action?docID=6686709. Created from nyulibrary-ebooks on 2021-09-02 06:30:41.

Index

gendered language 70-72, 74, 76, 79, 82, 88 gratifications 436-443, 447-452, 465, 467 Green Dot 186-187, 189, 198 Groups Administrators 397, 408

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H health 1-14, 16-17, 19-21, 23-52, 57, 60, 64-67, 69, 80-81, 84-85, 87-97, 101-106, 108-110, 113-115, 119-125, 127-128, 131-134, 136-137, 139-141, 143-152, 154-159, 163-165, 167, 169-176, 178179, 182-188, 193-198, 203-204, 207, 209-241, 243, 246-260, 262-293, 295-296, 298-312, 317-328, 330-331, 333-347, 349-355, 357-377, 379-385, 387-403, 406, 408, 411-416, 418-421, 423-424, 426-427, 429-431, 433-438, 441-446, 448-468, 470-472, 474-475, 477-482, 484-488, 490-496, 498-509, 511-513, 515, 518-567, 569575, 577-583, 585-586, 588-590, 593-610, 612615, 618-619, 629-631, 634-656 health behavior 14, 140, 350, 365, 374, 636, 638-640, 643-645, 648, 652, 654-656 health campaigns 37, 39, 57, 170, 179, 183, 185, 193, 456, 458-459, 462, 467, 480, 615 health communication 16, 27, 33-38, 41-50, 121, 123124, 133, 137, 140, 143, 145, 147, 156-159, 164165, 170, 176, 194-197, 218, 220, 229-235, 309, 325-326, 330, 333-334, 338-340, 345, 347, 351, 361, 363, 365-369, 397, 402-403, 406, 413, 415, 434-435, 448, 450-456, 458-467, 470, 479, 487, 492, 494-495, 502-503, 544, 551, 554, 559, 561, 564-566, 577, 579-580, 612-615, 630, 634-635, 639-640, 643, 645, 648, 651-656 health information 2-5, 8-12, 23, 33-34, 36, 38-45, 48-49, 91-96, 101-103, 105, 122, 137, 147-149, 154, 167, 169, 172, 175-176, 182-185, 198, 220-221, 231-234, 237, 252, 254, 264, 288-293, 296, 298-300, 302-306, 308-312, 318, 333-334, 343-346, 350, 352-353, 357-359, 362, 365, 367, 373, 380, 397-398, 400, 414, 449-450, 454-459, 461-463, 467, 470, 478, 487-488, 494, 499, 503-504, 506, 509, 511-512, 520-521, 523, 526, 532-534, 536-537, 539-547, 549-554, 556-557, 572, 574, 577, 580, 585, 596, 599, 602-603, 607609, 612-613, 619, 630-631, 634-635, 637-641, 645, 651-653, 656 Health Information Technologies (HIT) 511, 536 health information use 289-290 health innovation 539-540, 544, 546, 557 health literacy 1-5, 8-14, 41, 43, 49, 89, 91-97, 101106, 121, 123, 148-149, 156, 159, 203, 213, 217,

251-257, 263-264, 266-277, 283-285, 288, 309, 311, 370-377, 379, 382-385, 387-395, 455-456, 458, 463-465, 498-505, 511-512, 515, 518, 523526, 529, 531-532, 534-536, 538-539, 541-543, 547-548, 550, 552-555, 557, 600-601, 610, 612, 615, 630 health management 12, 28, 30, 94, 220-221, 237, 276, 281, 303, 305, 311, 324, 414, 538, 545, 550, 558, 561, 567, 585-586, 589, 593 health system 91-92, 94, 103, 108, 115, 119-120, 255, 300-301, 305, 426, 431, 433, 454, 466, 506, 511, 540-541 healthcare 2-8, 12-15, 19, 23, 40-42, 44, 48, 70, 76, 79, 89-95, 97-98, 100-104, 106, 122-123, 144147, 149, 152-156, 158-160, 203-204, 212, 218, 220, 222, 224, 227-228, 235-240, 242, 248, 251, 254-256, 263-265, 269, 271, 286, 288-293, 296, 298-308, 310, 329-330, 333-334, 337, 340, 342, 346-347, 362, 364, 371-375, 384-385, 391, 393, 398, 400, 403, 414, 451, 457-459, 461-464, 467, 489-490, 493, 498-502, 504-514, 517-532, 534, 536-551, 553-554, 556-558, 563, 571, 582, 588-591, 593-596, 598-603, 605-610, 618, 630, 635-636, 643, 656 Healthcare Portal Adoption 505, 527, 529 healthcare service delivery 542, 588 hematological malignancies 238, 243-244, 249 HISB (Health Information Seeking Behaviors) 221, 237

I IBD 397-414, 416-417 indigenous 33-39, 41-42, 44-51, 53-60, 63-65, 67, 69, 145 indigenous communication 34, 47, 50-51, 53, 57-58, 64, 67 indigenous language 33-39, 41-42, 44-51, 53-57, 60, 63-65, 67, 69 indigenous language media 33-39, 41-42, 44-45, 47-51, 53, 55, 60, 63-65, 69 inequalities 6, 25, 78, 81, 89-92, 95-96, 103-105, 234, 255, 311, 333, 395, 419, 466, 522 Inflammatory Bowel Disease 344, 397-399, 408, 414-417 influencer 444-446, 448, 452 influencers 436-438, 444-448 information 2-6, 8-12, 14, 16, 23-25, 30, 32-46, 48-50, 53, 57-61, 63-65, 69, 79, 88, 91-97, 101103, 105-106, 108-111, 113-114, 119-120, 122, 125-126, 128-134, 136-139, 142-145, 147-151, 153-154, 156-160, 164-167, 169-172, 175-177,

Research Anthology on Improving Health Literacy Through Patient Communication and Mass Media, edited by Association, Information Resources Management, IGI Global, 2021. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/nyulibrary-ebooks/detail.action?docID=6686709. Created from nyulibrary-ebooks on 2021-09-02 06:30:41.

659

Index

179, 181-187, 190, 192-194, 198, 201, 211-214, 217-234, 237, 240-245, 248, 251-254, 256, 260, 263-266, 268, 273, 276-277, 280-282, 284-285, 288-293, 296, 298-300, 302-306, 308-312, 318321, 324, 329-331, 333-347, 350-359, 361-362, 364-367, 369-375, 377-380, 383, 385-388, 390, 392, 394, 396-404, 406, 409, 411-414, 416-423, 426, 429-431, 433, 435, 437-446, 449-450, 452463, 465-472, 475-478, 480, 485, 487-489, 492496, 498-504, 506, 509-513, 518-521, 523-526, 529-530, 532-537, 539-559, 562-566, 569-580, 584-586, 588-590, 594-596, 598-610, 612-619, 621, 630-647, 649-656 Information and Communication Technologies 37, 44, 218-219, 234, 402, 454, 460, 467, 549, 556, 595, 643 Information Pollution 251, 273 information sharing 35, 219, 438, 441-442, 452-453, 455, 460, 468, 542, 544, 607 information technologies 309, 361, 453, 455-456, 459, 511, 536, 588, 613 informational support 320-321, 324, 350, 369, 435 innovation 37-38, 91, 266, 282, 285, 499, 501, 538540, 544, 546, 548-549, 553, 557, 565, 591, 596, 602, 615 Instagram 131, 416, 436-442, 444-452, 463, 469-470, 476, 478, 487, 492 Instagram Comments 452 Instagram Post 452 Instagram Stories 452 instrumental support 320-321, 324, 369 Internet use 232, 359, 364, 414, 419-420, 453-454, 468, 471 interpersonal communication 24, 221, 226, 230, 326, 329, 361, 367, 448, 450, 615, 639-641

K Kuleshov Effect 111, 124-125

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L language 1-2, 4, 6-8, 10-11, 14, 17, 25, 27, 33-51, 53-57, 60, 63-82, 84-88, 93, 97, 101-102, 109, 111-112, 120-121, 134, 149-151, 213, 253, 260, 263, 267-268, 327, 346-347, 367, 381, 388, 440, 458, 498, 508, 514, 518, 522, 531, 539, 542, 547, 560, 575, 613, 643-645, 647-649, 651, 654 Linguistic Competency 14 Lowe Syndrome 169, 179 lurkers 347, 363, 431, 439, 452

M mass media 24, 27, 30, 35-37, 46-48, 57-58, 68-69, 125, 131, 133, 137, 139, 182, 184-186, 193-197, 219, 221, 251-252, 260-261, 268, 273, 454-456, 459-460, 465, 467, 477, 479-480, 486-488, 496, 639, 641 maternal mortality 39, 183, 186, 193, 197-198 media advocacy 49, 131, 141, 177, 220, 236, 458, 468 media agenda 163, 170 media coverage of opioid abuse 129 Mediated Health Information 182, 198 medical communication 70-71, 79, 82, 86, 558, 561 medical education 12, 110, 121, 238, 345, 370 medical professionals 78, 102, 131, 165, 433, 538-539, 541, 547, 558, 560-561, 563-566, 570-580, 586 medical tourism 143-159, 556 Medicine 4, 9, 12-14, 26, 28-29, 31-32, 47, 52, 66-68, 70-78, 80-88, 92, 121-124, 145, 150-152, 156-157, 159, 164, 169, 177-178, 181, 195, 203, 214-217, 229-236, 242, 245, 247, 249, 252, 254-255, 258259, 266, 268, 271-272, 284-287, 290, 308-312, 319, 327-328, 336, 343, 345-347, 366, 375, 393, 395, 400, 403, 406, 411, 415, 424, 428-429, 431, 449, 459, 463-466, 474, 480, 484, 491, 494, 498500, 502, 507-508, 512-513, 520, 525, 532, 535, 537, 544, 546, 552, 554-555, 557-558, 561, 581, 583, 599-600, 605-606, 609, 613, 615, 621, 624, 631, 641-642, 649-655 mental health 123-124, 185, 234, 236, 243, 317-319, 321-328, 346, 352, 359, 362, 364, 366, 375, 396, 437, 441-443, 445-446, 449, 559-560, 575, 594, 608 message 6, 25, 37, 39, 42, 56, 58, 108, 120, 131, 148, 165, 172, 186, 188, 197, 200, 234, 320, 324, 329, 356, 406, 408, 423, 445-446, 449, 461, 470, 477, 490, 512, 529, 532, 536, 613-614, 636, 640-642, 644, 646-647, 649, 653-654 m-health 498, 500-501, 503-504, 590, 605, 635-637, 641, 649, 656 mHealth 220, 231, 359, 364, 533, 551, 554, 583, 588, 590, 596, 600-602, 605-607, 609, 643 migrants 15-17, 23-26, 28, 547-548, 550 Misconception Frame 189, 191, 198 misconceptions 50-53, 57, 60-65, 182-187, 189-190, 192-193, 198, 201, 456, 460, 603 mobile application 255, 391, 595, 600, 610, 612, 617, 631, 634 mobile health 5, 40, 498, 500, 504, 539-541, 547, 557, 559, 588-590, 596-602, 604-610, 642-643, 649, 656

660

Research Anthology on Improving Health Literacy Through Patient Communication and Mass Media, edited by Association, Information Resources Management, IGI Global, 2021. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/nyulibrary-ebooks/detail.action?docID=6686709. Created from nyulibrary-ebooks on 2021-09-02 06:30:41.

Index

Mobile Health (m-Health) 498, 504 mobile technology 415, 466, 499, 541, 588, 590, 605, 607, 619 montage 108-109, 111-112, 114, 119-121, 125 motivations 35, 145, 158, 292, 418, 436-437, 442-443, 448, 463, 486, 509 Movie portrayals 108, 125 My Health Record 538-539, 544-546, 551, 555, 557 MyHRC 538-553, 555, 557 myths 50-51, 53, 57, 60-65, 110, 184, 192-193, 198, 603

N NCDs 481-493 new media 26, 67, 158, 220, 226, 340, 363, 400, 449, 454-455, 457, 462, 469, 494, 654 News Framing 186, 194-195, 198 news media 137, 143, 146, 157, 177, 186, 192, 195, 197-198 NHS 70, 89-93, 95, 97-98, 104-105, 271 Nigeria 15, 23, 26, 28, 30, 33-38, 40-41, 44-48, 50-52, 54-56, 60-61, 63-69, 183-184, 186, 188, 192, 194, 196-197, 256, 343, 374, 392, 453-455, 457-460, 462-465, 469, 471-476, 478-480 Nigerian Newspaper Coverage 182 normalization 146, 157, 223-224, 237

O On-Demand Technology Model 504 online community 120, 174, 178, 233, 350, 353, 357, 369, 438-440, 443-444, 446 online networks 317, 349-350, 354 online social support 321, 349, 351, 358, 360, 366, 419-420, 431 online support community 350, 353-354, 369 opiates 130, 141-142 opioids 128-131, 133, 135, 139, 142, 260

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P Paternalism (Physician-Patient Relationships) 237 Patient 3.0 Profile 289-290, 293, 296, 298-304 patient advocacy 146-147, 152-153, 163, 172, 222, 504 patient agency 558, 577 patient behavior 13, 330, 370, 406, 527, 602 Patient Beliefs 238 patient communication 85, 232, 234, 241, 247, 250, 343, 360 patient empowerment 1, 4, 8, 13-14, 178, 220, 228229, 232, 235, 237-238, 241-242, 245, 274, 276,

288, 340, 364, 380, 393, 538-539, 547, 549-550, 588-595, 602-606, 608, 610 patient engagement 1, 3-4, 14, 91, 289-292, 301, 303304, 337, 347, 512-513, 534, 610 patient health education 370-371, 373, 375, 382-383, 389-392 patient health records 538 patient journey 218, 225, 229, 233-234, 236-237 patient mortality 143, 145-147, 153, 155-156, 159161, 264 patient organizations 164-165, 167, 169, 171-172, 179, 242 patient outcomes 212, 216, 232, 288, 395, 501, 504, 583 patient portal 13, 306, 311, 506-507, 509-513, 519, 523, 525, 529, 531-532, 536, 607 Patient Reported Outcomes Measurement 203 Patient Representation 163 patient-centered care 8, 274, 276-277, 281, 283, 288, 302, 307, 310, 520, 535, 588, 593, 599, 649 Patient-empowerment 370 patient-physician communication 221, 238, 511, 521, 559 patient-physician interactions 8, 108, 222, 224, 228 patients 1-11, 13-14, 19-20, 24, 31, 42, 52-53, 57, 60-61, 64, 66-67, 70-71, 73, 78-79, 82, 85, 89-104, 108, 110, 113-114, 119-121, 126, 128, 143-156, 159, 163-177, 179, 194, 203-204, 206-207, 211-213, 216, 218-250, 253-255, 257, 262-268, 273-277, 279-288, 290-291, 302-303, 306, 308-312, 330347, 349-351, 353-354, 360-362, 365-367, 370, 373-375, 379, 381-382, 393, 397-404, 406, 408416, 418-421, 424, 427-435, 456, 458, 464-467, 470, 475, 494, 496, 499, 501-502, 504, 506-515, 518, 520-544, 546-548, 550, 552, 556-561, 563566, 570-580, 582-584, 586, 588-591, 593-596, 598-604, 606-610, 636, 642, 647, 650, 652 pharmaceutical drugs 330-331, 340 physical health 154, 210, 228, 318-319, 322-325, 328, 355, 357-358, 366 physician-patient interactions 218, 228, 241 Poland Syndrome 171, 179 portal readiness 311, 511, 522-524, 526, 532, 535, 537 poverty 2, 90, 95, 251, 254, 260, 273, 319, 458-459, 466, 547 press releases 29, 169, 179 prevention 8, 25-26, 29, 31-32, 37, 42-43, 53, 94, 131, 139, 164, 167, 203, 219, 221, 230, 236, 242, 251-252, 255-262, 266-267, 269, 271-272, 275, 278, 280-281, 283-284, 286, 288, 306, 311, 333, 361, 372, 377, 384, 396, 441-442, 449, 459-460, 464, 466, 470-471, 481-482, 484-490, 492-494,

Research Anthology on Improving Health Literacy Through Patient Communication and Mass Media, edited by Association, Information Resources Management, IGI Global, 2021. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/nyulibrary-ebooks/detail.action?docID=6686709. Created from nyulibrary-ebooks on 2021-09-02 06:30:41.

661

Index

498, 500-501, 504, 588, 596, 602, 606, 615, 639 PRO 203-209, 211-214, 216 Prosocial Use of Facebook 127 Psychological Empowerment 589-591, 594, 604-605, 608-610 public awareness 37, 142, 146, 172, 193, 222, 470, 481-482, 486 public health 1, 13, 16, 21, 23-24, 26-28, 31-32, 37-39, 44-45, 52, 60, 92, 104, 123, 128, 131, 137, 139141, 157, 173-175, 178, 183-184, 194, 196-197, 233-234, 236, 255-256, 265, 270-271, 280, 285, 293, 304, 309, 326, 333, 344, 360, 371, 392, 395, 418, 448-451, 453-457, 459, 461, 463-468, 470, 472, 474-475, 480, 484-485, 487-488, 494-496, 500, 534-535, 555, 583, 603, 610, 615, 650, 654-655

Q Qualitative analysis 100-101, 148, 362, 418 quantified self-tracking 236, 562-563, 580, 583

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R Race Concordant 537 Raising Awareness of Opioid Abuse 127 rare diseases 108-109, 111-116, 119-120, 126, 163173, 175, 177-181, 218-219, 221-222, 224-226, 228-237, 417 Reciprocity (Physician-Patient Relationships) 237 Rehabilitation Process 276, 288 relationships 76, 79-81, 86, 109-110, 112, 174, 210, 213, 219-220, 222-225, 227, 237, 244, 260-261, 281, 289-290, 298, 304-305, 312, 317-329, 331, 335-336, 340, 351-352, 354-359, 361, 365-366, 368, 378, 393, 398, 403-404, 409-410, 414, 419, 428, 431, 437, 439, 443-444, 447-449, 508, 510511, 519, 527, 530-531, 535, 554, 558-564, 570, 576, 579, 593, 596, 631, 638 rhetorical relationship 558-561, 563, 573, 575, 577-580 risk communication 15-16, 23-29, 32, 143, 148, 155, 159, 344 Role Of SMPs 330 Role Of SMPs On Patient Behavior 330

S Safety-Net Hospital 511, 537 science of individuality 635, 637, 641-642, 644, 649, 656 screening outcomes 370-371, 377, 380, 385-387,

389-390 screening test sensitivity and specificity 377 self-care 3, 5, 8, 10-12, 61, 93-94, 206, 209, 221-225, 274-288, 290-291, 319, 506, 542, 550, 583, 589, 608, 636 Self-Diagnosis 233, 251, 273, 573 self-management 9, 238, 245, 276, 278-280, 282, 285289, 299-300, 303, 383, 393, 400, 506, 509-510, 514, 519-520, 523, 525, 527, 529, 540, 542-545, 548-550, 552, 554, 593, 602-604 Show-Back 273 sickle cell disorder 50-51, 53, 57, 59-67, 69, 469-474, 476, 478-479 sickle cell disorder (SCD) 64, 469-471 social capital 193, 325, 329, 354, 362-363, 434, 449, 451-452 Social Determinants of Health (SDOH) 505-507, 537 Social Emergency Medicine 507-508, 525, 532, 537 Social Identity Theory 508, 537 social media 28, 34, 40, 48, 63, 79, 124, 127, 130131, 147, 151, 153, 172, 174-177, 185, 197, 236, 251, 273, 330-347, 359-361, 369, 380, 397-398, 400-404, 406, 408, 411, 413-416, 418-419, 431, 434-436, 438-442, 445-457, 460-473, 476-478, 481-482, 484-485, 487-489, 492-496, 499, 501, 565 social media promotion 330-331, 333, 339-340 social network 80, 96, 101, 169, 219, 231, 317, 320-324, 326, 329, 333, 336, 338-342, 347, 350, 354, 358359, 362, 369, 402, 419, 421, 434, 463, 493-494 social support 143, 152-154, 156-157, 176, 178, 219, 230-231, 233, 239, 260, 276, 317-326, 328-329, 335-336, 340, 344, 347, 349-369, 400, 418-422, 424, 429-431, 434, 436-438, 442-444, 446-447, 449-452, 457, 496, 524, 531 Social Vulnerability (Healthcare) 537 Sociolinguistics 70, 72, 80, 88 sociotechnical 561, 563-564, 577, 579, 581-582 Solution Frame 182, 187, 189, 191, 198, 201 Spain 28, 163-164, 169-170, 173-177, 179, 248 Spanish media 163, 170 stakeholders 24, 38, 109, 113-114, 179, 219-220, 222, 228, 237, 255, 330, 340, 342, 414, 453, 458, 461, 481, 484-485, 487, 489, 492-493, 496, 499, 536, 539, 547-548, 579, 589, 595, 602-603, 635 stereotype 75 stigmatization 38, 60, 64-65, 110, 167, 191, 416, 419, 435 strong tie networks 320, 325, 329 strong ties 354-355 Sturge-Weber 169, 179

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Research Anthology on Improving Health Literacy Through Patient Communication and Mass Media, edited by Association, Information Resources Management, IGI Global, 2021. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/nyulibrary-ebooks/detail.action?docID=6686709. Created from nyulibrary-ebooks on 2021-09-02 06:30:41.

Index

Subjective Norms 519, 537 surgery 28, 70, 73-78, 81-88, 94, 110, 143-148, 150152, 154-159, 175, 211, 213-215, 417, 525, 583, 601, 607 Sweeps Period 167, 179

T

UK 46-48, 66, 68, 70, 81, 83-87, 89-91, 94-98, 100105, 123, 125, 132, 139-140, 180-181, 203-204, 214, 216, 229-230, 233-234, 242, 259, 265, 271, 287, 311, 328, 414, 546, 650-651, 655 under-the-counter drugs 251, 259, 268, 273 Universal Health Care 273 University of Southern California 498, 504 User Diversity 615, 617, 634 user experience 247, 397, 399, 402 User Gratification 456-457, 468 User-based Usability Testing 612, 634

V Viral Hepatitis Management 15, 23

W War on Drugs 128, 131, 139, 142 weak tie networks 320, 325, 329, 354 weak ties 320, 325, 354, 363 wearable technologies 558-559, 561-567, 569-570, 572-577, 579-580, 585-586

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tailored health communication 345, 495, 643, 645, 648, 653-654, 656 Targeted Health Communication 652, 656 teach-back 260, 263, 273 technology 2, 5, 7, 10-11, 14, 28, 30, 32, 35-37, 39, 41, 43, 45-49, 53, 58, 81, 101, 121, 123, 144-145, 156, 178, 212, 216, 226, 230, 245, 248, 281, 284, 289293, 296, 299-300, 302, 304-306, 310-312, 330, 344-345, 358, 364, 366-367, 370, 375, 380-381, 393, 396, 399, 415, 439, 441-442, 450, 456, 458, 464-466, 474-475, 479, 490-491, 495, 498-504, 507-513, 518-521, 523-527, 531-534, 536-537, 539-541, 547-550, 553-556, 559, 562-565, 567, 569-572, 575-578, 580-583, 585-586, 588, 590, 596, 600, 602, 604-608, 610, 613, 617-619, 629, 631, 635-636, 639, 644, 646, 649-654 Treacher Collins Syndrome (TCS) 179 trust 24, 70, 97-100, 154, 218-220, 226-227, 232, 237, 239, 306, 329, 379-380, 431, 443, 446, 465, 479, 490, 505-511, 517, 519-521, 523, 526-529, 531-536, 540-541, 552, 560-561, 563, 566, 572, 578-580, 586, 601, 640 Turkey 251, 253, 255, 265, 269, 418-419, 422, 427, 431, 433, 612, 617-618, 631-632, 634 Turkish Social Media 418 TVE 167, 170, 179

U

Research Anthology on Improving Health Literacy Through Patient Communication and Mass Media, edited by Association, Information Resources Management, IGI Global, 2021. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/nyulibrary-ebooks/detail.action?docID=6686709. Created from nyulibrary-ebooks on 2021-09-02 06:30:41.

663