Qualitative Health Research : Creating a New Discipline 9781611320114, 9781611320091

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Qualitative Health Research creatin g a n ew d iscipline

To Robert Michael Morse

Qualitative Health Research

c r e at i n g a n e w discipline

Janice M. Morse

First published 2012 by Left Coast Press, Inc. Published 2016 by Routledge 2 Park Square, Milton Park, Abingdon, Oxon OX14 4RN 711 Third Avenue, New York, NY 10017, USA

Routledge is an imprint of the Taylor & Francis Group, an informa business Copyright © 2012 Taylor & Francis All rights reserved. No part of this book may be reprinted or reproduced or utilised in any form or by any electronic, mechanical, or other means, now known or hereafter invented, including photocopying and recording, or in any information storage or retrieval system, without permission in writing from the publishers. Notice: Product or corporate names may be trademarks or registered trademarks, and are used only for identification and explanation without intent to infringe.

Library of Congress Cataloging-in-Publication Data Morse, Janice M. Qualitative health research: creating a new discipline / Janice M. Morse. p. ; cm.  Includes bibliographical references and index.  Summary: “The leading figure in qualitative health research (QHR), Janice M. Morse, asserts that QHR is its own separate discipline—distinct from both traditional health research and other kinds of qualitative research—and examines the implications of this position for theory, research, and practice. She contends that the health care environments transform many of the traditional norms of qualitative research and shape a new and different kind of research tradition. Similarly, the humanizing ethos of qualitative health research has much to teach traditional researchers and practitioners in health disciplines. She explores how the discipline of QHR can play out in practice, both in the clinic and in the classroom, in North America and around the world. A challenging, thought-provoking call to rethink how to conduct qualitative research in health settings—Provided by publisher. ISBN 978-1-61132-009-1 (hardback: alk. paper) — ISBN 978-1-61132-010-7 (pbk.: alk. paper) — ISBN 978-1-61132-011-4 (institutional eBook) — ISBN 978-1-61132-593-5 (consumer eBook) I. Title. [DNLM: 1.  Qualitative Research. 2.  Health Services Research.  W 20.5] 610.72’1— dc23  2012012840 ISBN 978-1-61132-009-1 hardcover ISBN 978-1-61132-010-7 paperback

contents

Preface • 11 chapter 1

Introducing Qualitative Health Research • 17 Defining Qualitative Health Research • 21 Qualitative Health Research has a Distinct Perspective • 21 Qualitative Health Research has Distinct Methods • 22 Who Does Qualitative Health Research? • 23 Background: The Emergence of Qualitative Health Research • 24 The Evidenced-Based Challenge • 25 Competing with Quantitative Inquiry • 26 The Emergence of Mixed Methods • 27 The Value of the Person • 27 The Uniqueness of Qualitative Health Research • 28 The Characteristics of Qualitative Health Researchers • 28 Qualitative Health Research as a Discipline • 30

chapter 2

What is Qualitative Health Research? • 31 What is the Domain of Qualitative Health Research? • 33 1. Identification of health care needs or problems • 41 2. Examining processes of seeking health care, including barriers and access to care • 41 3. Descriptions of the illness experience • 42 4. Trajectories of decline or recovery from mental or physical illness • 42 5. Behaviors and experiences of professional and lay care providers • 43 6. Research that contributes to the examination of health care professions • 44 7. Health care evaluation, establishment of evidence, policy and program development • 45 8. Development/modification of qualitative methods • 46 5

chapter 3

The Why of Qualitative Health Research: Humanizing Health Care • 51 Todres’ Human Dimensions of Illness • 53 Depersonalization • 54 What is Humanizing Health Care? • 54 A Social Justice Agenda for Humanizing Health Research • 56 The Societal “Push” for Humanistic Qualitative Research • 57 Humanizing Changes Arising From Qualitative Health Research • 57 Qualitative Health Research Agendas Enable the Humanization of Health Care • 58 Qualitative Health Research Descriptions Serve as Sensitizers for Those With a Moral Conscience • 59 Example: Breastfeeding mothers who are returning to work • 59 Qualitative health research serves as an advocator or communicator • 60 Example: Do infants feel pain? • 60 Qualitative Health Research Contributes a New Perspective to the Development of Health Science • 61 Example: Caring as a concept and the concept of caring • 61 Qualitative Health Research Identifies/Documents Critical (Life-Saving) Actions in Care • 62 Example: Talking through—The Comfort Talk Register (CRT) • 62 Qualitative Health Research Provides Moral Commentary on Removing Harmful Practices and Creating Humanizing Change • 63 Example: Un-restraining psychogeriatric patients • 63 The Pragmatic Goals of Qualitative Health Research • 64 Elicits meaning and “gives voice” to participants • 64 Micro-analytically see what is actually going on • 66 Interprets from the other’s perspective • 66 Describes the experiences and contexts both in present and over time by delineating trajectories • 66 Identifies and develops relevant concepts and develops theories • 67 Identifies appropriate interventions and examines the effect and/or impact of those interventions • 67 What Does Qualitative Health Research Do That Quantitative Methods Cannot? • 68



Chapter 4

The How or the Methodological Challenge of Qualitative Health Research • 69 Studying “Health” • 70 Characteristics of participants • 71 Professional caregivers as participants • 72 Characteristics of context • 72 Hospital/institutional research • 72 Community research • 74 Methodological Compromise? • 75 Issues of access • 77 Nondisclosure • 77 Consent • 78 Self-as-participant • 79 Sample Size and Certainty • 79 The Goodness! and The Certainty Criteria • 79 Common Criticisms of Qualitative Health Research • 80 Premature Submission • 80 Lack of Theoretical Development • 80 The Weaknesses Inherent in Qualitative Inquiry Render it Worthless • 81 The Rigor Debates: What is “Good” Qualitative Inquiry? • 81 Review Criteria Used by Qualitative Health Research • 82 Methods Most Frequently Used in Qualitative Health Research • 84 Ethnography • 84 Grounded Theory • 85 Phenomenological Research • 86 Observational Research • 86 Focus Groups • 87 Semi-Structured Interviews • 88 Qualitatively-Driven Mixed Methods • 89 What are the Risks When Conducting Qualitative Health Research? • 89 Principles for the Ethical Conduct of Qualitative Health Research • 90 1. Risk may occur throughout the research process, is emergent and on-going; so too risk assessment must be flexible and on-going. • 90 2. The qualitative researcher must be prepared for the research procedures, be familiar with existing knowledge on the topic, and anticipate its “emotional terrrain.” • 90 3. Risk assessment, avoidance, and alleviation are the ongoing responsibility of the researcher. • 91

4. Researchers must be cognizant of their own vulnerability and that of the research team. • 92 5. In the protection of anonymity and confidentiality, the researcher’s responsibility is first to the participant and the setting, and second, to the research goals. • 92 6. The risk to participants includes the risk of publication of the results of the research. • 92

Chapter 5

Compelling Evidence: Expanding Criteria of Evidence • 95 The Misuses of the Cochrane Criteria • 95 Background of the Cochrane Criteria • 96 Qualitative Inquiry is Classified as Grade C • 96 Where Does This Leave Qualitative Health Research? • 97 Question #1: Does Qualitative Research Save Lives? • 101 Question #2: Can Qualitative Health Research Meet the Cochrane Criteria? • 101 What Cochrane demands • 102 An Evidence Base for Qualitative Health Research • 103 Rigorous Qualitative Inquiry as Evidence • 103 Building rigor internally is the responsibility of the researcher. • 103 Demonstrating rigor is the responsibility of the reviewer/implementer. • 103 Methods are rarely all interpretive or all descriptive. • 105 Explore and Adapt Alternative Models of Evidence • 106 Forensic Designs • 00 1. Deliberate trial or testing of interventions with N = 1 research • 107 2. Establishing causality with observation and precise, microanalytic, observational description • 107 3. Data-less inquiry • 110 4. Simulation: Participant-less inquiry • 110 Rules of Evidence for Qualitative Research • 110 Use Logic and Common Sense as Methodological Tools • 111 1. The rule of inclusion: Safe for all • 111 2. The rule of minimizing risk • 111 3. The rule of respect for common sense, logic, and the possible/probable • 111 Compelling Evidence • 112 Developing Compelling Evidence • 114

Chapter 6

The Maturation of Qualitative Health Research • 115 How Qualitative Research Contributes to Knowledge • 118 The Accrual of Qualitative Knowledge • 118 Level 1: Identification of significant concepts • 120 Level 2: Description of concepts • 120 Level 3: Studying the concept in different situations • 120 Level 4: Exploring the relationship of the concept with other co-occurring concepts • 121 Level 5: Synthesizing knowledge • 121 Level 6: Model and theory development • 122 Level 7: Assessment and measurement • 122 Level 8: Clinical application and evaluation of outcomes • 123 Knowledge Accrues Qualitatively • 123 Qualitative Description • 124 Level 1: Description • 124 Level 2 and Level 3: Towards conceptualization and abstraction • 125 Levels 4 to 6: Qualitatively-derived theories • 126 Difficulties with Clinical Dissemination • 128 What is the Solution? • 129 Extending our methods to produce a product for implementation • 129 Dissemination through education • 129 Are We Mature Yet? • 130

Chapter 7

Establishing Qualitative Health Research as a Discipline • 133 Politically Supporting Qualitative Health Research • 134 Back to the Rigor Debate • 134 Generalization and Other Nitty–Gritty Problems • 135 “Qualitative research is not generalizable.” • 1367 “Qualitative research is biased.” • 136 “One investigator cannot code reliably.” • 137 “That study was done 10 years ago!” • 137 Supporting a Mature Qualitative Health Research • 137 Role of the Federal Government, Foundations, and Donors • 139

Ideal Model for Qualitative Research Methodological Development • 140 Preparation of New Researchers • 140 Support for Research • 141 Consulting • 141 A Place in Academia • 141 Now What? • 142 Final Words • 142

Appendix 1

Resources: Qualitative Health Research Texts • 145 Appendix 2

The Global Congress for Qualitative Health Research • 147 Notes • 153 References • 155 Index • 167 About the Author • 173

Preface

Having the opportunity to sit down and write on the development of qualitative health research gives me an odd feeling. It means, for one thing, that I am coming to the end of my career. Perhaps that is a good thing, because I have ruffled a lot of feathers in the last three or more decades. But it is always good to have the opportunity to take stock, and in the process of taking stock, I have the opportunity to correct, to apologize, to thank, and to appreciate. It also gives me the opportunity to say some things that, in the wisdom of youth, I kept to myself; and it gives me the opportunity to push the future, in some small way, in a direction I have chosen. “Skeptical and scornful.” Such was the attitude toward qualitative research in medical centers in the early 1980s when I took my first academic position. “Review boards”—committees for reviewing the ethics of proposed research—were new. In order to gain permission to do research in the hospital, one had to appear before the monthly meeting of the heads of the hospital’s departments of medicine. Nursing had one seat, for the hospital’s Director of Nursing. The Dean of Nursing (or the Associate Dean for Research) did not have a seat. These physicians were experts in research design for clinical drug trials, but knew nothing of qualitative inquiry. Every time I took a proposal to this imposing group, I was questioned about my sampling strategies, sample size, bias, the absence of a questionnaire, and so forth. The committee then proceeded to table my application and, as a consequence, I would spend the next four weeks lobbying and explaining what I wanted to do, and how and why I wanted to conduct such a research project. It was intimidating and scary, and something no new and shy academic should have to experience. 11 Qualitative Health Research Research: Creating a Discipline by Janice M. Morse, 11-16. ©2012 Left Coast Press, Inc. All rights reserved.

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“What doesn’t kill you, makes you stronger,” or so they say, and in retrospect, it was those early days that made me a methodologist. And after a few years, l was able to explain all of the basic assumptions of qualitative inquiry quickly, clearly, and simply. To those fifteen heads of departments of medicine: Thank you. So, last spring, when awarding me the International Council for Qualitative Inquiry’s Lifetime Achievement Award, presenters Julianne Cheek and Maria Mayan said, “Despite a skeptical and scornful climate. . . .” That period, when I felt I was fighting for the right to do qualitative inquiry, had not previously been mentioned publically. To hear this brought back sudden jarring and shocking feelings of a time when qualitative health researchers, even in a climate of academic freedom, had to fight for the right to do their research. As I later received grants from federal agencies, including the National Institutes of Health, the overt opposition to qualitative inquiry slowly dwindled, yet covert opposition continued. When I created the International Institute for Qualitative Methodology (IIQM), it continued as constant threats under the guise of criticisms about funding, space, business plans, objectives, and training versus a research agenda. Even though the IIQM was stunningly successful internationally, overall, the University of Alberta remained ambivalent about our programs—and even our continued existence. The cost to me and to my staff was distraction and exhaustion, as we constantly tried to swim against the current. The IIQM’s goals, although approved by the governing Council of Health Sciences, did not fit with the Council’s expectations. We were a methods institute, with goals of qualitative methodological development, training, and research—in that order. We had some income from conferences and workshops, but not a large income from research grants. I did not attend to that aspect, because in Canada, at that time, indirect costs did not accompany federal grants, and those funds were expected to come from the provinces, the University, and one’s own department. Despite this, qualitative methods gained ground at the university. In the Faculty of Nursing, I taught a basic course in qualitative methods. Many of the faculty, who at that time were also enrolled in doctoral programs in other faculties, took this course, and used qualitative methods for their dissertations, their subsequent research programs, and for the supervision of students. Supported by very strong qualitative researchers in education, most notably Max van Manen and Jean Clandinin— each with their own research programs and cadre of students—the

preface  13 

University of Alberta became very strong internationally at the student/ methodological development level, yet the IIQM still lacked support at the administrative level. We made important contributions, both nationally and internationally. My colleagues continue to hold conferences, teach qualitative methods, conduct research, mentor, and publish, and our students have dispersed across Canada and internationally, doing excellent research, publishing, and mentoring graduate students and postdoctoral fellows. Qualitative inquiry is now firmly embedded in social science health research in Canada, as well as the United States. In the past five years, since relocating in Utah, the successes of the IIQM have continued to build. Canadian submissions to Qualitative Health Research are only slightly lower than submissions from the United States, yet Canada has a population roughly the size of California. Bolstered by the interest in mixed-method design, qualitative research is gaining credence with many who previously considered only quantitative methods. At least introductory qualitative research is now becoming a standard requirement at the doctoral level. Research articles reporting qualitative results are becoming commonplace in most journals. Qualitative health research is here to stay. Hence, this book. Over the past few years I have made the argument that qualitative health research is a subdiscipline in the health sciences. But I underestimated the field. In this book, I make the case that qualitative health research is a discipline in its own right, with unique methods, subject matter, concepts and theories, practices, interventions, and standards of evidence. We have our own conferences, texts, journals. We have courses, and shortly there will be programs. We are building our own body of knowledge. Of course, disciplines do not stop developing, but here I provide the justification, arguments, and plan of action for qualitative health research as a mature discipline. In 2012, funding for a new area is a major problem, but as a society we cannot afford to discount qualitative health research. Its outcomes are important and its interventions practical. Qualitative health research places the people themselves at its center: the sick, the handicapped, the elderly, and the infirm, as well as their families and their caregivers. It is a discipline that moves us toward health at a time when illness is unaffordable. Qualitative heath research, as a discipline, is making a difference.

14  preface

Acknowledgments I am indebted to many who have taught, facilitated, supported, listened, assisted, and worked with me toward building qualitative health research. I would like to thank: • First and foremost Mitch Allen, publisher of Left Coast Press, Inc., who invited me to write this book. I would not have done so without his urging. He stood over me with a symbolic stick, so I would get it done, and then published it without missing a beat. • The reviewers of this text who made it so much stronger: Julianne Cheek, Cheryl Beck, Sally Thorne, and Maria Mayan and her doctoral students—Rona Macdonald, Flo Slomp, Jocelyn Graham, Richard Oster, Jessica Moffatt, Christine Daum, and Maxi Miciak. Louise Bell, Bob Morse, and Dori Fortune worked to make the commas correct and the text make sense. Thank you. • My instructors from the 1970s at the University of Utah, most notably Madeline Leininger—who made the initial push for qualitative inquiry within the context of transcultural nursing—and Peter Morley, the late Charles Hughes, John McCullough, and John Sullivan for their support. • My Utah doctoral colleagues, who have remained lifetime friends and supporters of qualitative inquiry: Joyceen Boyle, Dee Ray, Kathy McCance, and Nancy Savage. • Council on Nursing and Anthropology (CONAA) members Jody Glittenburg, Melanie Dreher, Julienne Lipson, Pam Brink, Janice Swanson, Phyllis Stern, and Katharyn May, who mentored and supported me. CONAA, a part of the Medical Anthropology section of the American Anthropological Association, was the major means of disseminating qualitative health research in the 1970s. • From the University of Alberta: Norah Keating, Marnie Wood, Gerry Glassford, Max van Manen, Jean Clandinin, Bill McBlain, Joe Norris, and my oldest friend, Kay Dier. • Within the IIQM: Maria Mayan, Karin Olson, Charlotte Pooler, Linda Neihaus, Jude Spiers, special assistants Don Wells and Corrine D’Sousa, and, with blessings, Karen McDaniel. • My colleagues from Penn State: Judy Hupcey, Sara Gueldner, Janice Penrod, Carl Mitcham, Betty Lenz, and special assistant, Anna Lombard. • My international colleagues and friends, who, with their enthusiasm and grace, developed and spread qualitative health research around the globe: from Korea, Kyung Rim Shin and Seung Eun Chung; from

preface  15 

• •

•

•

•

South Africa, Marie Poggenpoel and Chris Myburgh; from Mexico, César Cisneros Puebla, Francisco Mercado-Martinez, and Bernardo Turnbull; from Britain, Les Todres, Kate Galvin, and Immy Holloway; from Israel, Lea Kacen and Michal Krumer-Nevo; from Spain, Carmen de la Cuesta and Carlos Calderón; from South America, Margareth Angelo and Dulce Gualda; from Thailand, Earmporn Thongkrajai; from Europe, the late Steinar Kval (Denmark), Max Tarozzi and Guen Graffigna (Italy), and Mieike Grypdonk (the Netherlands and Belgium); from Australia, Julianne Cheek and Irena Madjar; and from New Zealand, Julie Boddy. Researchers from the United States include Julie Corbin, Mike Agar, and Kathy Charmaz, and from Canada, Art Frank, Sally Thorne, Shirley Solberg, and Judith Wuest. Those at Sage Publications who supported my publication work: Dan Ruth and Christine Smedley. Those who have supported the journal Qualitative Health Research: Associate Editors: Tony Kuzel, Joan Bottorff, Jack Coulehan, Sally Thorne, Julianne Cheek, and Lauren Clark, and for so many years, John Engel and Katharyn May; and in the essential background, issue after issue, Dori Fortune and Moira Calder. My students, who are now my colleagues and friends, and who fill me with pride at their stunning accomplishments—paying it forward. You carefully thought through everything I said and asked questions until I made sense. This is a huge list: many of you hold influential positions in universities and government, all of you are expert qualitative health researchers, and most of you are listed as co-authors and collaborators on my publications. I am proud of you all. The Ida May “Dotty” Barnes, RN and D. Keith Barnes, MD Presidential Endowed Chair, College of Nursing, University of Utah, which provided the time for writing this book. Finally, this work—the whole lot of it—was made possible because of my husband, Bob, who reads, discusses, edits, and gives me the space to write. Thank you. Janice Morse 20th March, 2012

16  preface

Permissions I thank the following for permission to use extracts of the following: Sage Publications

Morse, J. M. (2006a). The politics of evidence. Qualitative Health Research, 15, 395-404 Morse, J. M. (2006b). It is time to revise the Cochrane criteria. Qualitative Health Research, 16, 315-317. DOI:10.1177/1049732305285495 Morse, J. M. (2010a). How different is qualitative health research from quantitative research? Do we have a subdiscipline? Qualitative Health Research, 20, 1459-1464. DOI:10.1177/1049732310379116 Morse, J. M. (2011). What is qualitative health research? In N. Denzin & Y. Lincoln (Eds.), Sage Handbook of Qualitative Inquiry (4th ed., pp. 401-414). Thousand Oaks, CA: Sage. Morse, J. M. (2012a). Introducing the First Global Congress for Qualitative Health Research: What are we? What will we do—and why? Qualitative Health Research, 23, 1459-1464. Informa Healthcare

Todres, L., Galvin, K. T. & Holloway, I. (2009) The humanization of healthcare: A value framework for qualitative research. International Journal of Qualitative Studies on Health and Wellbeing, 1-10. First article.

Chapter 1

Introducing Qualitative Health Research

(15 minutes into the interview) int = Interviewee jm = Morse int: . . . they changed medications on me. Pain killers. That’s what started it, and I was having withdrawals and my mind was just going a hundred miles an hour. Yikes! I don’t know why anyone would want to be addicted to drugs. I was just wretched and I remember calling the nurse and saying, “Don’t leave me alone—I’m going to die!” And she said, “Oh—half an hour ago you told me you wanted to die, which is it? Make up your mind.” [Laughter] She was good. jm: You’ve told us what we call the “medical story.” Now I want you to tell me how you got through it. int: I’m not finished with the medical story. jm: Oh—excuse me. int: For three and a half months or whatever it was, I was getting sicker and sicker and sicker, and I didn’t know what was wrong with me, and I thought I was going to die and they thought I was going to die. ‘Cause my weight went down to, I don’t know, like 105 pounds, ‘cause I couldn’t eat, everything would come back up again . . . .

17 Qualitative Health Research Research: Creating a Discipline by Janice M. Morse, 17-30. ©2012 Left Coast Press, Inc. All rights reserved.

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(18 minutes into the interview) jm: Tell me how you got through this. int: [Pause] I’d wake up almost every day and I’d say, “This is not real, it’s not my life, it’s a bad dream, I’m going to wake up.” Almost every day. And it’s getting harder and harder for me to cope. To the point now where I’m going back for therapy tomorrow. Going back to work helps. I’m back part time now—they won’t let me come back full time, ‘cause they’re concerned about my health and I need to rest, and da de da de da. . . . So it’s getting more and more difficult for me to cope with it, just because it keeps coming back at me. So, it’s hard not to believe. You know, initially I thought, “I’m going to beat this.” [My former husband] is amazing. He comes to see me all the time, we cry together. That’s what I do now, I spend a lot of time crying. Where I didn’t when I was first diagnosed. . . . I try not to think about it, but at the same time, I do every day. It’s like giving yourself a break from thinking about cancer or thinking about colostomies or thinking about how my body’s been butchered. And I think that’s how I try to cope with it, you know. I do what I have to do with it, when I have to do it, but then I don’t think about it—or I try not to—until it makes rude sounds. [Laughter] And then I’m reminded. This “dialogue,” or transcript, shows many characteristics of the qualitative unstructured interview. Participants are free to tell their stories as they wish. The telling is usually intimate, emotional, and detailed, and is focused on the participant and his or her feelings, responses, actions, and decisions, which are told in detail, sequentially, and with an intensely introverted stance. The researcher has little or no control over the content or direction of the interview—in fact, the participant may become so involved with telling that the researcher no longer exists for them (Corbin & Morse, 2003). The researcher is primarily a listener, and the participant unconsciously selects the content and form and is in control of the course of the interview, determining when it is finished. If the researcher is unclear about any aspect of the story, he or she must wait to ask questions at the end of the interview. As you will note from this interview, once the participant is firmly embedded in his or her story, it is hard to interrupt. In qualitative health research, analysis is usually inductive. That is, the researcher works from the data to the theory results, rather than starting with a preconceived theory into which the data are fit. There are myriad

Introducing Qualitative Health Research  19 

qualitative methods, and, while qualitative methods do not all use unstructured interviews (or even consist of interviews at all), this type of interview is the most common approach to analysis, being used in ethnography, grounded theory, and some types of phenomenology. Several important features of an unstructured interview are seen in the dialogue at the start of this chapter, illustrating the very essence of qualitative inquiry. First, qualitative researchers are always aware of the perspective and voice of the participant, and of the fact that they may not be getting the information that they need in an interview. In this example, one can clearly see the participant’s perspective and how it changes. Initially the participant speaks about the course of her illness from the perspective of the bearer of symptoms and recipient of treatments. We call this the medical story. The medical story may be of interest to qualitative researchers if the topic of the study is, for instances, compliance or evaluation of care. But as the researcher could access most of this content from the patient’s chart, it is not usually of primary concern; thus it is considered to be “context.” In this study, we were seeking information about suffering—about how the participant was responding to her prognosis. To do this, I had to gently move her from her medical story to one about her emotional response to the knowledge that she was dying. As you will note, she was reluctant to do this. Next, because the participant is in control, techniques for moving the participant from one “track,” or story, to another, can be difficult. Often, participants must stay in the first track until they think they are ready. They must be satisfied that the researcher understands what they went through. They have chosen to trust the researcher, and realize that they have the strength to move into the more emotionally difficult story. In the last paragraph of this quotation, the participant is still talking in generalities, which is less emotionally taxing than speaking of specific examples. Shortly, she will convert to single events, raw in their description, and this is the most painful and emotional part of the interview. Participants will cry, and may need to take a short break, but not one has ever elected to stop the interview. It seems that, no matter how painful, they must keep going. In qualitative health research, such techniques are the essence of inquiry. Qualitative health research includes the parts of peoples’ lives that they have never told another person; they have not previously been given the privilege of telling their whole story all at once. While the story reveals much to others, it is often also a revelation to the participants themselves. Paradoxically, although the interview appears particular to the individual, when it is combined with others’ stories of similar experiences, patterns may be recognized. But qualitative researchers do not limit their

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analysis to the obvious, descriptive story—they also use interpretations to elicit meanings behind the story. They explore the story for inferences and metaphors, and may even discern meanings for which we have no words or concepts. Qualitative research often expresses or represents what the persons themselves have been unable to say. Thus, it brings to the fore new knowledge and insights. Not all qualitative research resembles the example above. In qualitative health research different interview types are used according to the structure of information required, the purpose of the inquiry, and the method being used. Unstructured interviews provide private, intimate interviews on data-specific topics. Man on the street interviews, used when the researcher needs targeted information, are superficial and fast. Interviews with guided questions, or semi-structured interviews, are used when the researcher has more information about the topic, and knows the questions to ask, but not the answers. Group interviews, such as focus groups, elicit discussions on particular topics. These provide public information. Qualitative health researchers are interested in people and their lives, and in their problems as people, focusing on their perceived or experienced health status, or using their diseases or health states as background or context. The researchers determine how people perceive their worlds by looking for lay concepts and interpreting people’s experiences. They look for patterns and the association between concepts. They build midrange theories to explain experiences, to recognize similar situations, and to predict outcomes. These qualitative analyses give insights into illness and into the patterns that responses and illness trajectories form, and help to make this information and these theories part of the standard knowledge required by health professionals. At least, that is the intent, if utilization is possible. Qualitative health research can provide nurses, physicians, and other health care professionals with important missing pieces in our knowledge of health and illness—how people respond to illness and injury, descriptions of their health-care-seeking behaviors, and the meaning of the interactions with caregivers. When evaluating programs, qualitative health researchers include human interactions that provide us with such details as family interaction and tell us about living with disease while trying to attain health. These data provide us with information about the essence of healthy families and communities and why people do and do not seek help, attend clinics, or follow medical advice. Program evaluation tells us what makes a healthy school, home, or work environment. Qualitative health researchers put people first. We focus on their experiences with health and illness: with their feelings, emotions, and behaviors.

Introducing Qualitative Health Research  21 

We study how illness affects people’s everyday lives, for instance, their relationships with their spouse, parents, families, and friends, and how their families and friends respond to them. We are also interested in how illness impacts people’s work and their leisure. Qualitative health research can tell us why people do not exit abusive relationships, or about living with homelessness or alone with a chronic illness. Also, we are interested in how these people manage their expected futures, their expected course of illness, and their eventual dying and death. Welcome to qualitative health research. While it can be emotionally draining, it is fascinating. Like so much else the world around us, we will find out much that we would rather not know, but if we are to truly understand these experiences, we can’t leave out the unpleasant, gross side of life, because it is an essential element of the story. This is what illness is—people bleed from their bodies as well as their hearts. And this is what the struggle to attain health is, and so it must be documented. These experiences are what qualitative health researchers document, analyze, and theorize about. Researchers identify interventions and examine them; they then move their findings back into professional care, into the political agenda, the educational realm, and back to the people themselves.

Defining Qualitative Health Research Qualitative Health Research is a research approach to exploring health and illness as they are perceived by the people themselves, rather than from the researcher’s perspective. Researchers use qualitative research methods to elicit emotions and perspectives, beliefs and values, and actions and behaviors, and to understand the participants’ responses to health and illness and the meanings they construct about the experience. Qualitative health research is defined by two parameters: focus and methods. The focus is on the health–illness continuum and the methods are primarily inductive; that is, they are primarily designed to gain information about the person’s or group’s perspective or behaviors. However, other characteristics of qualitative health research also set it apart as a distinct discipline. Qualitative Health Research Has a Distinct Perspective When comparing qualitative and quantitative health research, the most crucial difference is in the focus and the level of analysis. Qualitative health research puts the individual back into the picture, especially descriptions

22  chapter 1

of the emotional self. We tend to focus on the individual’s experience, although patterned group responses are also important. We focus on concepts important to health, and on the development of frameworks and theories. Because of hospital entry restrictions, qualitative researchers from disciplines not concerned with health care tended not to include the sick in their studies until the AIDS epidemic, when those ill and dying in the community were bought to their attention. On the other hand, quantitative researchers deal with emotional content by quantifying their data, and report results statistically at the group and population level. Qualitative Health Research Has Distinct Methods The second difference that partitions qualitative health research is in the research methods. While the same methods may be used in qualitative health research as in qualitative inquiry in general, the health care context often forces adaptation of the methods (see Chapter 4). Due to pain, treatment schedules, fatigue, or visitors, hospitalized and ill patients can rarely give the researcher lengthy interviews. This restriction limits and segments data collection. Further, as most patients are in hospital for a short time, interviews are sometimes cut short because the patient has suddenly been discharged. In the community, qualitative health researchers may use participant action research (PAR), collaborating with community organizations, so that their research questions are pertinent, their design acceptable to participants, and their results relevant and applicable through policy and programmatic changes. Qualitative health researchers conduct studies in peoples’ homes or with the homeless. They conduct research in workplaces or schools, examining healthy or risky behaviors, beliefs and attitudes, and practices. They study individuals, families, caregivers, and the cared for. They study all age groups. They examine written materials—newspapers, commercial advertising, policies, and legislation. They examine the overt messages descriptively and the covert interpretatively. All of this contributes to our understanding of our participants and of what is “going on.” Some qualitative methods, such as ethnography (as used in anthropology), may not lend themselves easily to the emotional dimensions of illness (Beatty, 2010), but ethnography is of primary importance in evaluation research and in case studies when the hospital unit itself is the level of analysis. Nursing developed a new form of ethnography— focused ethnography—to be used when the ill persons themselves did not form a delineated community, but remained as individuals within families in the community with no contact between the ill persons. In this case, the assumptions of ethnography still held, because, for instance, a

Introducing Qualitative Health Research  23 

person with a stroke would be treated as “a person with a stroke” by others, thus learning the behavioral norms of a stroke patient. Methodologically, qualitative health researchers have developed and refined methods to accurately capture the phenomena that they study. The best example, grounded theory, was developed at the School of Nursing at the University of California, San Francisco, by Barney Glaser and Anselm Strauss (1967). Grounded theory is a method that best reflects the changes that occur in illness transitions—from health to illness to dying, from illness to health—or in the process of maintaining health. If a person is too ill to be interviewed, is aphasic, or is unconscious, the researcher is forced to use observational methods, or secondary data, by interviewing a parent or spouse of the ill person. Additionally, researchers may be able to interview the person after he or she has recovered, and often the person’s memories are vivid and detailed even years after the illness onset. These interviews can be particularly useful, as the person may then report on their emotional response to each part of the illness, therefore giving a more meaningful interview.

Who Does Qualitative Health Research? Most qualitative health research is conducted by health professionals who are attuned to identifying a good research question and able to recognize the particular context and situation that would achieve the best answers. Ideally, the qualitative health researcher should be an excellent qualitative methodologist; have the ability to modify methods to fit contextual and participants’ limitations; be knowledgeable about hospital codes of conduct (confidentiality, etc.); have an understanding of illness, the patient’s condition, staff roles, and relationships with the staff; and, finally, have the wisdom and ability to step back to evaluate and balance the clinical situation from multiple different perspectives. Qualitative health research is a discipline with different substantive outputs than other types of qualitative research, and it requires a different methodological skill. It is a discipline that makes a unique contribution to both health care and qualitative research. In light of this, qualitative health researchers have different needs that must be met in qualitative health research courses, texts, conferences, and so forth. The specialized conditions for the collection and interpretation of the stories and the formulation of recommendations result in a “changed product,” or outcome, when qualitative health research is conducted by outsiders. Qualitative health research consists of modified methods, administered in special circumstances, with unique and tailored interventions. These features

24  chapter 1

provide qualitative health research with the status of a discipline, worthy of separate methodological texts, journals for reporting results to health professionals, special courses, and even professional societies.

Background: The Emergence of Qualitative Health Research Is qualitative health research something new? No. It is probably the oldest type of health research, based on careful, recorded observation by the physician or midwife. Why then, the fuss? Why is qualitative health research being introduced into curricula now? If it is so old, why is it not engrained as permanent course content from which other quantitative health disciplines emerged? What happened? During the 1960s and until the mid 1970s, qualitative research—even qualitative health research—was struggling to maintain legitimacy. Some disciplines in some geographic locations maintained important programs of qualitative research, mostly in anthropology and sociology. Some of this work endures as classical studies, which now form the foundation for qualitative health research. From sociology, we use Becker’s study of the socialization of medical students, Boys in White (Becker, Geer, Hughes, & Strauss, 1961), and Erving Goffman’s Asylums (1961), a study of “mental patients and other inmates” in Washington, DC. From anthropology, Zborowski’s People in Pain (1969) is still significant. In the late 1960s, there was a push to develop research in nursing and to provide a cohort of doctorally prepared nurse scientists to do this work. Some of these nurses chose to obtain their doctorates in sociology and anthropology, thus becoming knowledgeable in qualitative methods. They brought this knowledge to nursing graduate programs, writing texts and teaching courses in qualitative research. I am thinking especially of Margarita Kay (Arizona), Madeleine Leininger (Utah), and Pamela Brink (UCLA). During this period, Anselm Strauss and Barney Glaser obtained positions in the School of Nursing at the University of California at San Francisco. From their common experience of their parents dying in hospitals, they had become research collaborators and developed grounded theory. The nurses they taught in the 1970s (first, Jeanne Quint Benitol, and later, Julie Corbin, Kathy Charmaz, Adele Clarke, Phyllis Stern, and Carolyn Weiner, among others) provided access to the clinical sites, assisting with data collection, learning grounded theory, being co-authors, and eventually becoming grounded theorists in their own right. Meanwhile, qualitative researchers in health were still handicapped by the paucity of journals willing to publish qualitative inquiry, and qualitative health research was scattered amongst several journals, such as

Introducing Qualitative Health Research  25 

Social Science in Medicine, or in disciplinary specialist journals, such as Medical Anthropology or Symbolic Interaction. In 1991, Sage Publications launched Qualitative Health Research as a quarterly journal; it now appears in 12 issues annually and is the primary source for qualitative methods and research relating to health. The first books on methods for qualitative health research were in nursing, published in 1985 (Field & Morse, 1985; Leininger, 1985; Parse, Coyne & Smith, 1985). About this time, at least one basic course in qualitative inquiry was recognized as necessary in nursing graduate programs, but qualitative inquiry still had difficulty getting funded or published. Lobbying groups, such as the Council for Nursing and Anthropology, served as watchdogs, ensuring that the National Center for Nursing Research (now the National Institute for Nursing Research) had qualitative reviewers on its review panels and following up on inappropriate journal reviews. In the 1990s, qualitative health research became established and somewhat respectable, although undercurrents of pushback remained. Methodological texts increased dramatically. However, although qualitative health research was gaining acceptance, there was an acute shortage of mentors—a problem that remains in some parts of the world today.

The Evidence-Based Challenge In the 1990s, the struggle for legitimacy was not yet over, as the evidencebased movement spread from Britain across the Atlantic. In medicine, the evidence-based movement started with Cochrane (1972/1989) and rated the quality of research by examining the quality of evidence. Using a hierarchy of research designs, he assigned the highest level of evidence to the randomized clinical trial and the lowest to “mere opinion.” While I do not believe that Cochrane intended to include qualitative inquiry in this hierarchy, others have assigned qualitative inquiry to the lowest rank, categorizing it as “mere opinion.” The result of this classification was that qualitative inquiry was denigrated as invalid and of little worth. For instance, in the 1990s in Australia, where the Cochrane system was used for research funding by the National Health and Medical Research Council (NHMRC), it meant that qualitative inquiry was ranked as noncompetitive, and this took considerable energy to successfully reverse. Today, NHMRC does fund qualitative inquiry, supporting workshops and commissioning qualitative research. In Britain in the 1990s, however, qualitative inquiry was not considered generalizable, and was considered inappropriate to be included for Cochrane reviews. It took a committee initially led by Jennie Popay

26  chapter 1

from the University of Manchester to have qualitative inquiry recognized as an adequately rigorous method to be included in reviews to determine evidence, albeit mostly as “context.” The British Medical Journal (BMJ) now publishes a regular column on qualitative methods, and in the U.S., the occasional qualitative article appears in the New England Journal of Medicine (NEJM) and in the Journal of the American Medical Association (JAMA). Efforts to develop qualitative evidence—evidence determined by qualitative methods—are now becoming more accepted and no doubt will increase in the next decade. In Chapter 4, and elsewhere (Morse, 2006a,b), I argue that researchers may obtain their results faster and more cheaply using qualitative methods and can use the results with equal certainty. Competing with Quantitative Inquiry Although the “rules” inherent in qualitative inquiry appear vague and subjective, the rules for conducting quantitative inquiry appear clear and logical, and provide concrete guidance. For instance, in quantitative inquiry, the required sample size can be calculated exactly, and the calculations checked or replicated. Hypotheses can be tested, and supported or rejected. Actual percentages of a population with certain characteristics or diseases can be obtained, and changes over time calculated. Programs can be evaluated measuring specific indicators, knowledge and attitudes measured, and drug efficacy calculated. These have been dizzying decades for quantitative inquiry—full of certainty, sophistication, and tables with numbers filling lengthy reports. In comparison, qualitative methods were often ignored or pushed roughly aside. One feature not helping was that the principles of qualitative inquiry were directly opposite to those taught to quantitative researchers, and as a consequence, those who subscribed to qualitative research were treated as ignorant and their research as invalid, not worth considering. In health sciences in particular, where medical students were taught only experimental design and epidemiology, qualitative researchers were denigrated and their work ostracized or ignored (“It is only a qualitative study”). They were blocked from conducting clinical research because the research was considered not rigorous, and even immoral. (Committee members said, “Invalid research is a waste of the patient’s time, when they have so little time left.”) Consequently, work by qualitative researchers was not funded by granting agencies, was rejected from publication in journals, and was excluded from reviews and texts.

Introducing Qualitative Health Research  27 

The Emergence of Mixed Methods Only in the last fifteen years have quantitative researchers conceded that their methods may leave a few gaps that cannot be answered quantitatively. Quantitative methods, they eventually realized, may tell us what is going on but gives no details about why. Quantitative methods leave out the richness, the emotion, and the details. And in this process they leave out the person who is the recipient of care. The solution was to include a component of qualitative research in quantitative studies, as mixed-method design. Often the qualitative component was minor—a few focus groups or interviews—to compensate for the missing perspective or information. As these minor components became more complex, qualitative researchers were added to the research teams, and team research, with investigators from similar or different disciplines, came into vogue. The Value of the Person With the new millennium, many things happened simultaneously. Patients—the sick, the dying, and their families—objected to being depersonalized and demanded to be treated as people, to be involved in their own health care choices, and to be told their diagnoses and if they were close to dying. They began writing autobiographies of their illnesses, which became best sellers. Even physicians who became patients wrote of their experiences “from the other side.” Illness was coming out from the closet, and as the door opened, it revealed all of its emotions and sensory secrets. Stories from individuals became valued in society and were systematically collected and stored in libraries—even, for certain topics, in the National Library of Medicine. Now appreciating the individual and the context, libraries are preserving recordings—interviews—of individuals’ stories. Movies were made about heroes with illnesses. Famous people publically gave their accounts: even the wife of a United States President, Betty Ford, made no secret of her rehabilitation from alcoholism and breast cancer. In the tradition of the sermon, these narratives and reallife examples were powerful lessons for millions. The masses, it seemed, did not want to be told abstract rules and principles for living their lives healthfully; they needed qualitative narratives. The new qualitative health research developed a moral agenda. In our research, we can now attend to emotions of health care, we can attend to the person, and we can identify and test interventions.

28  chapter 1

The Uniqueness of Qualitative Health Research Today, in 2012, the boundaries between qualitative and quantitative research remain clear. We all agree that the research question dictates the method to be used, and that qualitative and quantitative questions are distinct and serve different purposes. If there is a grey area, the researcher will usually opt for quantitative research, because those are the methods which most researchers are familiar with and competent in. However, this dichotomy has resulted in different substantive areas being addressed by different methods, with most of the health research addressing concrete quantitative questions of treatment efficacy, rather than “softer” qualitative questions pertaining to the experience of illness and of receiving care. This should be no surprise, since medicine has traditionally been concerned with the pathophysiological processes rather than the person (referred to by Abraham Verghese [2008, p. 2749] as the “iPatient”), with physicians focusing on lab values displayed in the monitor or chart rather than examining the patient. From the medical perspective, with value only upon curing disease, qualitative inquiry’s attention to the patient’s experience is “off focus.” For instance, from the medical perspective it is more important to develop adequate analgesics than to learn about the experience of chronic pain or how patients cope with such pain in their daily lives, whether or not adequate analgesia is available. Even though qualitative inquiry could remove much trial and error from practice, such as contributing to the optimal way of “breaking bad news,” medicine continues to largely ignore questions that can best be answered using qualitative methods. For medicine, much of the qualitative realm is not desired knowledge: physicians might find it more difficult to treat patients if they understood the patients’ experiences—for instance, how painful a procedure actually is, and it would be more difficult to provide care with the insight of shared, vicarious pain.

The Characteristics of Qualitative Researchers Most qualitative health research is conducted by health professionals as a means to understanding health, as well as for developing their profession and improving health care. I believe that a background as a health professional enables the conduct of qualitative health research for the following reasons: • Health professionals are “street smart,” knowing the rules, regulations, and norms for working in a hospital, on a reservation, in a patient’s home, or in a nursing home.

Introducing Qualitative Health Research  29 

• Health professionals with some working knowledge of the patient population can recognize appropriate research questions. • Because of their knowledge of the signs of fatigue and experience with illness, health professionals can monitor their patient participants throughout data collection. • From their completed projects, health professionals can readily make realistic recommendations for practice. When a researcher is preparing a proposal, the necessary background information is not a know-nothing/know-it-all dichotomy. There is usually some information in the library, and researchers usually have some personal knowledge of the topic. Health professionals gain knowledge working with patients, and their knowledge and perspective expand from this occupational closeness and care-provider role. Some researchers are themselves patients (or were at some point), or else were the significant others of patients, or perhaps simply the curious. These researchers may not have a medical background or extensive contact with health care, but are fascinated by medical/health topics. Which professions do qualitative health researchers come from? This question is difficult to answer from published articles, when the authors’ affiliations are listed in the article as a department (for instance, the Department of Behavioral and Social Sciences), rather than citing a discipline (for instance, sociology, psychology, medicine, or nursing). Nevertheless, it is evident that articles submitted to Qualitative Health Research are from many disciplines, including multi-disciplinary teams, and are not dominated by any particular discipline. Examples are: Nursing (including midwifery) Rehabilitation Health Policy Medicine Health Sciences Nutrition Psychiatry Counseling Psychology Physical Therapy Education Sociology Occupational therapy Theology Medical Anthropology Pharmacy Epidemiology Family Studies Dentistry Geography Communication

Epidemiology? Is that a mistake? Absolutely not. Agar (2003) is developing qualitative epidemiology, presenting a person as a case record, a “person-in-context,” and considering the epidemiology concepts of host, agent, and environment. There is no doubt that we will see an increase in qualitative inquiry in epidemiology, as exemplars and as microanalytic strategy for determining causation. Further, mixed-method

30  chapter 1

designs—designs with the qualitative study as either the main component or the supplemental component—are becoming increasingly important. Although qualitative health researchers are situated in most of the health care disciplines, their focus, questions, and methods vary according to their disciplinary perspective. As a result, a host of methods texts is emerging on how to conduct qualitative health research in the health professions— nursing, physical therapy, public health, and so forth. This divergence adds to the richness of qualitative health research as a discipline. Moreover, this research is now being conducted globally.

Qualitative Health Research as a Discipline In further chapters of this book, I will continue to build the argument that qualitative health research is a discipline. In Chapter 2, I will consider: What is qualitative health research? What exactly does qualitative health research contribute to our understanding of illness and of health? What is its substantive domain, and why is it important? As Chapter 2 asks the what, Chapter 3 will address the why. I will discuss the values in qualitative health research, and how inquiry extending from these values humanizes health care. Chapter 4 will address the how, the methods that qualitative health researchers use, or have modified and developed, in order to do qualitative health research. In 2012, research must be useful and it must be “good.” It must produce interventions or test interventions, and hence provide evidence for practice. Chapter 5 asks, Does it work? Does qualitative health research make a difference in our care? Does it make a difference in the health of our patients and of our communities? It also asks, Is this knowledge useful? Is it solid enough to be considered evidence? Can these findings be implemented? The maturation of qualitative health research knowledge is addressed in Chapter 6. How does knowledge in qualitative inquiry develop from a single study into general, mainstream knowledge? How does it develop concepts and theories? What is its contribution? Finally, Chapter 7 will revisit qualitative health research as a discipline. Will qualitative health research continue developing its place in academia? What is its impact? Will this developing body of knowledge change our lives?

Chapter 2

What is Qualitative Health Research?

Qualitative health research addresses content about health, illness (acute and chronic), and related subjects, as does quantitative health research. Nonetheless, qualitative health research has a totally different approach—a different goals, perspectives, and domains—which gives it a different area of inquiry and different product from quantitative inquiry. Qualitative health research is different because it coalesces from quantitative inquiry in the following three complementary dimensions: • the goal, or the intent, of the research, which arises from the underlying philosophy of qualitative inquiry and is evident in the researcher’s values and inductive research agenda. The goal is also evident in the question asked, in the proposal, and throughout the conduct of the research. This dimension will be addressed in Chapter 3, as the why of qualitative health research. • the perspective of qualitative health research, which is derived from the goal of inquiry and enabled through the use of qualitative methods. Qualitative methods are designed to bring the researcher close to the participants and the data, and to the person’s actual experience, so that our qualitative descriptions are personalized, individualized, and particular. We record individual events and evaluate care experiences, and with some methods we group these experiences to identify patterns and theories. We synthesize the experiences, developing an understanding of the usual and the exceptional. This dimension will be discussed in Chapter 4, as the how of qualitative health research.

31 Qualitative Health Research Research: Creating a Discipline by Janice M. Morse, 31-49. ©2012 Left Coast Press, Inc. All rights reserved.

32 chapter 2

Figure 2.1. The Three Dimensions and their Components that Comprise Qualitative Health Research

• the domain, or the outcome. Both the goal and the perspective produce research results that are value-laden, subjective, and usually beyond the reach of quantification. The domain is the what of the inquiry, that is, the topics and contexts in which qualitative inquiry is conducted. It includes the research results, how these results inform knowledge, and how they are implemented to develop policy or to change practice. This dimension is explored in this chapter. These three aspects, the goal, the perspective, and the domain, and their components comprise qualitative health research and are illustrated in Figure 2.1.

What is Qualitative Health Research?  33 

What is the Domain of Qualitative Health Research? In this section we focus on the domain—the substantive scope of qualitative health research. There are a number of approaches for determining the scope: we could conduct a survey of researchers, educators, students, and practitioners; or we could hold a meeting and somehow come to some consensus; or we could conduct focus groups with qualitative researchers. Another approach would be to examine the contents of the journal Qualitative Health Research, and report on the focus and dimensions found there. We could determine the aspects of the heath–illness continuum that qualitative health research covers. We could look at its focus to see if it considers the individual (self or outsider) or the dyad, family group, community, or nation. We could examine its context, noting if it was conducted in an institution (for instance, a hospital or nursing home), community, home, or somewhere else. We could ask: What groups, populations, and/or cultures are included? We could examine how we write about the participants, asking: Do we consider their ages, from prenatal to the frail elderly, their culture and ethnicity, and their gender? Finally in this section, we examine who authors qualitative health research. What are their professions and disciplines and their theoretical perspectives? What are their reasons for doing qualitative health research? And we consider their goal: Is it to describe, to identify concepts, or to build theory? Or is it to examine the therapeutic relationship? Or to improve the administration of care? Or to evaluate care outcomes and provide evidence? As the only journal specializing in qualitative health research, Qualitative Health Research (QHR) is an excellent place to conduct this analysis. Now, in 2012, QHR has reached volume 22, publishing on average 168 articles per year in twelve issues. It is a mature journal with an impact factor of 2.26, and is ranked thirteenth of fifty-eight journals listed under the rubric of “health policy” in the Thomson Reuters ISI Ranking. To make our analysis manageable, we will restrict the topics by focusing only on the articles published in Volume 21, 2011. In QHR in 2011, every second issue was a theme issue, with alternate issues publishing a potpourri of articles. The topics of the theme issues were Inside Illness, Strategies for Survival, Clinical Evidence, Counseling and Support, Bodily Disruption, and Perspectives on Mental Health. All of these topics fall under the description of either the illness experience or perceptions of attaining health and were pertinent to the mission of the journal. However, as none of the articles in these issues were the result of a special call for articles, these topics will not bias our analysis.

34  chapter 2

Content analysis of the articles produced eight thematic categories plus discussions about research methods (see Table 2.1). Some of the articles could have been sorted into more than one category (for instance, an article might fit into Category 1, “Identification of health care needs,” and into Category 8, “Development/modification of qualitative methods,” but I listed any such articles only once). Table 2.2 provides examples of articles published in QHR in 2011 in each category. Table 2.1. Domain of Qualitative Health Research Domain Characteristics 1. Identification of health care needs

Identifies silent or emerging health care problems; problems poorly addressed by the system, such as vulnerable populations; factors overlooked by the health care system; or environmental factors that may impair health. Usually uses ethnographic or interview methods.

2. Examining processes of seeking health care, including barriers and access to care

Includes cultural barriers to care, caregiver-patient interaction, compliance, and patient-centered care within all age groups and health care needs. Includes identification of the barriers and facilitators of care to individuals, the family, community and nation.

3. Exploring the illness experience

Describes and develops theories of the responses to illness, adjusting to being ill, and living with illness.

4. Trajectories of recovery from illness; living with a disability, mental or physical

Explores various patterns for the course of rehabilitation, e.g., rapid and complete, partial, or prolonged; also explores living as a disabled person in the community.

5. Behaviors and experiences of professional care providers

Examines both professional and lay caregivers.

6. Research that contributes to the examination of health care professions

Examines the process of becoming a health care professional, and positioning the content of qualitative health research in the curricula.

7. Health care evaluation, policy, and program development

Includes evaluation, ranging of health in the community to health care institutions, from programs, to individuals. From these results heath care policy is developed and new programs implemented.

8. Evidence-based practice

Identifies interventions and the assessment and utilization of these interventions.

9. Development/modification of qualitative methods

Develops or modifies specialized research methods in order to develop the above domains.

Wagman, et al., 410-418

Perceptions of life balance among a working population in Sweden HIV/HCV-coinfected African American or Puerto Rican men and women

Healthy working people

Nurses; nurse charting: “Routines at time of death”

Participant(s)

Hopfer & Clippard, 262-277 Kelly & Ganong, 349-364 Weerasinghe & Fernado, 365-372 Olufowote, 839-852

College women’s HPV vaccine decision narratives

Moving to place: Childhood cancer treatment decision making in single-parent and repartnered family structures

Paradox in treatment seeking: An experience from rural Sri Lanka

A dialectical perspective on informed consent to treatment: An examination of radiologists’ dilemmas and negotiations

Radiologists

Community members

Parents—Custodial, non-residential, and step parents

College women and college health clinicians

2. Examining processes of seeking health care, including barriers and access to care

Felt and enacted stigma among HIV/HCVLekas, Siegal & coinfected adults: The impact of stigma layering Leider, 1205-1219

Hadders, 233-248

Author(s),Page #s

Negotiating leave-taking events in the palliative medicine unit

1. Research to identify health care needs

Abbreviated title

Children’s medical center/ USA

Hospital

(Continued on following page)

Radiology/USA

Community— Dept. of community 3 rural villages medicine/Sri Lanka

Medical center

Methodology and prevention center/USA

School of public health/ USA

Private office in an AIDS clinic

University

Heath sciences/Sweden

Nursing/Norway

Author’s discipline/Country

Community

Palliative care unit

Context

Table 2.2. Examples of the Domains of Qualitative Health Research. All citations are from Qualitative Health Research, volume 21 (2011).

Author(s),Page #s

Rosenbek Minet, et al., 1115-1126 Sheffer, et al., 1075-1085 Fazio, Hunt, & Mo- Gay and bisexual Asian loneym, 625-641 American men

The experience of living with diabetes following a self-management program based on motivational interviewing

Understanding the barriers to use of free, proactive telephone counseling for tobacco dependence

“It’s one of the better drugs to use”: Perceptions of cocaine use among gay and bisexual Asian American men

Population of smokers, lower SES in Southern Arkansas

Focus groups interviews after a 4-day diabetes education program

Jaye & Fitzgerald, 1400-1412

OTs, GPs, PTs

Participant(s)

Occupational overuse syndrome: Moral ambiguities of New Zealand health professionals

3. Research exploring the illness experience

Abbreviated title

Table 2.2. Examples of the Domains of Qualitative Health Research. (continued)

San Francisco Bay Area dance scene

Telephone program

People with diabetes

In workplace or by telephone

Context

(Continued on following page)

Institute for Scientific Analysis/USA

Medical sciences/ USA

Department of rehabilitation/Denmark

Department of general practice and rural health/ New Zealand

Author’s discipline/Country

Author(s),Page #s

Participant(s)

Copeland & Heilemann, 520-533

Choosing “The best of the hells”: mothers face housing dilemmas for their adult children with mental illness and a history of violence

Mosack, et al., 15541566 Smithson, et al., 1567-1575 Hirano, et al., 199213

Health care provider perspectives on informal supporters’ involvement in HIV care

Membership and boundary maintenance on an online self-harm forum

Home care nurses’ provision of support to families of the elderly at the end of life

5. Behaviors and experiences of professional care providers

Own experience in ICU

Uotinen, 1307-1315

Senses, bodily knowledge, and autoethnography: unbeknown knowledge from an ICU experience

Home care nurses

Young adult members of a self-harm support group

HIV specialists

Mothers of adult children with a psychiatric disorder

Spousal caregivers

Care transition experiences of spousal caregiv- Byrne, Orange & ers: From a geriatric rehabilitation unit to home Ward-Griffin, 1371-1387

4. Trajectories of recovery from illness; living with a disability, mental or physical

Abbreviated title

Table 2.2. Examples of the Domains of Qualitative Health Research. (continued)

Home care nursing station

On-line participants

Clinic

Psychiatric hospital and unit of medical center

Dept. gerontological nursing/Japan

Psychology/UK

Psychology/USA

School of nursing/USA

Language and culture research/Finland

Sociology/Canada

Author’s discipline/ Country

(Continued on following page)

Argues for the inclusion of “senses” and bodily knowledge

Home

Context

Author(s), Page #s

Participant(s)

Nilsen, 1147-1158

Apesoa-Varano, et al., 1469-1483 Olson, et al., 1484-1494

Collaborative work by using videoconferencing: Opportunities for learning in daily medical practice

Curing and caring: The work of primary care physicians with dementia patients

Suicide notes among Native Americans, Hispanics, and Anglos

Suicide notes of persons from 5 cultural groups

Physicians providing services to community dwelling adults

GP and specialists videoconferencing over 9 days

6. Research that contributes to the examination of health care professions

Abbreviated title

Table 2.2. Examples of the Domains of Qualitative Health Research. (continued) Author’s discipline/Country

Records from the medical investigators’ office

Physician’s offices

(Continued on following page)

Pediatrics/USA

Nursing/ USA

Consultation of Hospital—Centre for inteone patient grated care and telemedicine/ Norway

Context

Author(s),Page #s

Stevens, et al., 757-770

Cricco-Lizza, 399-409 Sutton, et al., 1220- Participants of a 1228 community-based diabetes session Rabin, et al., 796-806

The influence of context on pain practices in the NICU: Perceptions of health care professionals

Everyday nursing practice values in the NICU and their reflection on breastfeeding promotion

Hypoglycemia education needs

Behavioral and psychosocial program needs of young adult cancer survivors

Rehabilitation center

Context

Young adults (18-39 years) with cancer

Registered nurses

Health care organization/USA Information collected pre-program development

(Continued on following page)

Behavioral and preventative Informtion on medicine/USA type of programs needed— and barriers to programs

Nursing/ USA

Nursing/Canada

Psychology/Canada

Author’s discipline/Country

Level IV NICU

79% nurses; 14% respira- 3 high risk tory therapists; 7% other NICUs; data compared with evidenced-based competencies

Wagman & Desjardins, 62-74

Brain injured persons

Participant(s)

I am many: The reconstruction of self following acquired brain injury

7. Health care evaluation, policy, and program development

Abbreviated title

Table 2.2. (continued)

Ghose, Swendeman Brothel-based sex workers, & George, 587-600 brothel madams, and street sex workers

The role of brothels in reducing HIV risk in Sonagachi, India

Elderly persons with cancer

Pleschberger, et al., 1588-1600

Interviews on end-of-life care with older people: Reflections on six European studies

Theoretical article

Participant(s)

Cheek, 696-703

Author(s),Page #s

Moving on: Researching, surviving, and thriving in the evidence-saturated world of health care

8. Research in evidenced-based practice

Abbreviated title

Table 2.2. Examples of the Domains of Qualitative Health Research. (continued)

End of life research group/ Austria, UK, Belgium, Netherlands Social policy & practice/ USA

Brothels targeted as intervention sites

Sociology, medical college/ Norway

Author’s discipline/Country

Six European countries.

Context

What is Qualitative Health Research?  41 

1. Identification of health care needs or problems It is often written that qualitative research “gives participants a voice.” That is, the research process deliberately seeks out silent, hidden, or even overt health care problems at the individual, family, or community level that are not being corrected. Examples of such problems are the trafficking of women from third world countries in the 1990s; the identification of inequities in health care, such as gender-based disparities; and the care of the vulnerable, such as victims of spousal abuse or sexual abuse of children. From Japan, Hirano and her research team (2011) explored home care nurses’ provision of support to families of the elderly at the end of life, a practice that was not overtly exposed. Home care nurses were responsible for (a) determining the possibility of dying at home, (b) determining what the death would be like and how they might intervene, (c) proposing where and how the family could say goodbye, (d) building family consensus, (e) coordinating resources, and (f) offering psychological support for end-of-life care. The authors determined the end-of-life care was “good,” and was a process “in which multiple components of care are provided with changing content as death approaches.” Another example of nonexplicit behaviors was reported by Rose (2011), who conducted an ethnographic study in low-income black neighborhoods in Detroit of the strategies used by those in poverty to acquire food. Surprisingly, the residents revealed a sophisticated knowledge of nutrition, but there were difficulties in actually purchasing food. They were forced to share transportation and use food banks, rather than purchase food at regular stores in surrounding areas. 2. Examining processes of seeking health care, including barriers and access to care Examining the barriers and access to health care programs is an essential part of understanding why people do or do not accept available services. These barriers may include cultural factors (such as beliefs about causation and the nature of the illness) or social factors (such as stigma or fear). Study topics may also address program needs (such as the availability of diabetic programs for elderly Hispanics) and accessibility, including transportation. An example of such an approach is Hopfer and Clippard’s study of college women’s decisions regarding a HPV vaccine (2011), which identifies “narratives of resistance or acceptance.” The women were presented with supportive family messages, explicit health care endorsements, and peer descriptive norms intended to reduce the stigma of vaccination. The authors also included disease framing (for example, cancer and human

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papillomavirus) in order to shape perceptions of vaccine benefits. Underlying the women’s relationship status and perception of disease susceptibility were themes of “skepticism of vaccine safety, invoking alternative prevention strategies, articulating stigmatizing HPV messages, overcoming self-efficacy barriers (for instance, cost, availability, time, and fear of parental disclosure), and delay strategies.” (p. 262). 3. Descriptions of the illness experience This category forms the major component of qualitative health research as a discipline (and the majority of articles published in QHR), and includes the individual’s and the family’s responses to illness, adjusting to being ill, and living with illness. An example of such an examination of illness is the study by Strohschein and her colleagues (2011), examining patient decision-making among older individuals with cancer. The authors found decision-making to be an ongoing process, changing with time and reflecting individual and relational components, as well as analytical and emotional ones. Decisions were made within the context of the health care team, family, and support network. Perceptions of “bother” were studied by Botelho, et al., (2011) to determine why symptom severity and extent to which symptoms bother the patient do not correspond. When symptoms were considered to be normal, bother was lower than when there was uncertainty regarding the symptom causation or when the course of the disease was unknown. The emotional responses of women to a breast abnormality, or “scare,” were explored by Blow, et al., (2011). The authors described the emotional experience resulting in “contemplation of the meaning of life” and recommended “tailored biopsychosocial treatments that focus on reducing stress, enhancing support systems, reframing beliefs about the illness and providing an opportunity for women to talk about their experience” (p. 1316). 4. Trajectories of decline or recovery from mental or physical illness In qualitative inquiry, the perspective of the research is not usually on a single incident, but rather on clusters of behaviors or on verbal occurrences and re-occurrences, so that patterns may be identified and described. If these patterns occur over time, trajectories may be identified and their course described. With health states, it is important to record and identify changes over time, as conditions deteriorate or improve and as needs and abilities change. Byrne, Orange and Ward-Griffin (2011) developed a conceptual framework explaining caregivers’ experiences during their spouses’ transition

What is Qualitative Health Research?  43 

from geriatric rehabilitation to their home. Caregivers responded to the fluctuating needs of their spouse, their own needs, and their joint needs. They reconciled these needs, situating them within a context shaped by a trajectory of prior care transitions and the intertwined life events experienced by caregivers. Examination of the long-term effects of the holocaust, lasting several generations, revealed that, although subsequent generations were not at risk for post traumatic stress disorder from the holocaust experience, they were at risk for developing high levels of psychological distress (Scharf & Mayseless, 2011). The mechanisms involved were related to basic needs, such as competence, relatedness, and autonomy, and were disorganizing. The authors reported instability, incomprehensibility, and helplessness, and concluded that their research “shed light on the effects of trauma over generations” and assisted therapists to understand the mechanisms involved (p. 1539). 5. Behaviors and experiences of professional and lay care providers Some researchers focus on those who are caring for the sick, exploring the experiences of both lay and professional caregivers. These researchers document the extent and adequacy of caregiving, and the effects on both the caregiver and the patient. They also describe interactions between the recipient of care and the caregiver. These researchers are interested in behaviors, as well as feelings and emotions, often looking to see how emotions may be reflected in behavior, and therefore “read” or interpreted by others. Illness brings dependency, including a reliance on others for assistance with intimate and private bodily functions. Professional caregiving is easier for the patient to accept than intimate care provided by the patient’s children. But dependency on the professional caregiver is more than being a recipient of physical care. Interviews with both lay and professional caregivers provide us with two types of perspectives: those comparing and contrasting lay and professional caregivers, and those of persons who are professionals but had also been patients. The experience of having been a patient changes the way physicians and nurses subsequently interact with patients, resulting in more empathy, self-disclosure, and recognition of the “disempowering” role of being a patient. Family caregivers have a specialized knowledge. They are experts and protectors, possessing practical knowledge about “what care is best” (or “least harmful”) for their loved one. Yet, when their loved one is transferred into hospital, they are forced to be on the sidelines, hovering and observing care, waiting for death (James, et al., 2009).

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6. Research that contributes to the examination of health care professions This category encompasses how professionals learn about their own practice, create knowledge to improve practice, and add to their disciplinary curricula. In medicine, qualitative inquiry assists with delineating symptoms and identifying new syndromes. Interestingly, the original compendium of medical signs and symptoms in medicine came from careful observations of the single patient—qualitative observations. This contribution formed the basis of early medicine, and the same process of symptom identification continues today. Medical knowledge and teaching (both in the classroom and on medical rounds) continues to be largely based on case-study design—an important qualitative method. Qualitative inquiry provides ideal methods for examining the responses and practices of caregivers in caregiving situations. For instance, ApesoaVarano, Barker, and Hinton (2011) explored the model of care that physicians provide for patients with degenerative dementia from Alzheimer’s disease. Physicians are forced to recognize the “limits of the cure paradigm and articulate a caring, more holistic model that addresses the psychosocial needs of dementia patients.” However, care is restricted because of “time constraints, emotional burden, and jurisdictional issues.” Thus the “care model remains secondary and temporary” (p. 1469). This type of research also focuses on how one becomes a healthcare professional; on the roles and responsibilities; and on the interactions among health professionals, their values, ethics, and practices in the provision of care. It includes safety, environment, policy, and administration of health care. This research may also examine practice to see what qualitative findings can reveal about what actually occurs in clinical teaching. An excellent example in this category is an exploration by Nilsen, et al., (2011) of how collaboratively videotaped discussion about cases enhances learning. Also education is proactively enhanced by examining practice and considering how evidence-based practice is or is not implemented and used (see Stevens, et al., 2011 or Cricco-Lizza, 2011) and then bringing the results back into the classroom. This category improves practice, not by directly building the knowledge base, but instead, by examining the misuse of knowledge or practices that may be corrected through in-service education or by altering the way they are taught in the curriculum. Articles in this category also address teaching techniques and strategies used by the health professions, and the development of models for teaching. Teaching in medicine and nursing has unique characteristics. Rounds are used, which necessarily involves patients, although the recent trend towards mannequins is replacing patients for students’ learning.

What is Qualitative Health Research?  45 

7. Health care evaluation, establishment of evidence, policy and program development Qualitative inquiry is frequently used prior to program implementation to identify health care needs and, subsequently, to determine program needs. This provides information about whether or not a particular program should be developed, as well as recommendations for the form and content of the program. As already discussed, researchers are also interested in collecting data about the processes of seeking health care, including barriers and access to care. This information can be built into programs, can be used to overcome barriers to such a program, and can involve community members at the stage of program conception. Qualitative inquiry provides ideal methods for evaluating programs. These methods give freedom to the participants to provide input into what is really right or wrong, and to make suggestions for change. Similarly, qualitative methods are used in health research to evaluate educational programs taught in workshops, in classrooms, or on the Internet. They also consider ways of teaching in the classroom by examining educational programs. Significant theoretical articles have been published in QHR, setting the stage for evaluation. An agenda for qualitative evaluation argued against rule-based checklists, and instead suggested that we use the methodological diversity and reflexivity of qualitative inquiry (Stige, et al., 2009). Writing from Iboamerica, Mercado-Martinez and colleagues (2008) also focused on methods for evaluation: participatory, qualitative, critical, hermeneutical, bottom-up, collaborative, and transdisciplinary approaches. In their review of seventy articles they noted that participatory and qualitative methods were the most commonly used methods in evaluation. Qualitative inquiry is excellent for evaluation, and evaluations range from quality of health in the community, to effectiveness of health care institutions, to patient self-reports of care. Qualitative evaluations (pertaining to the health care system, rather than patient symptoms, as in the previous category) not only enable the perceptions of care but also provide insights into causation and how problems may be “fixed.” The results of evaluation are used in policy and program development, which in turn are themselves evaluated. A more recent development is the evaluation of practice using evidencebased methods. Originally excluded from evidence, qualitative inquiry is now considered to have an increasingly important role in its development. This subject will be discussed in Chapter 4.

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8. Development/modification of qualitative methods Methods are the means to an end, the tools that researchers use to achieve their goals. Qualitative methods as described in the general texts—let’s call them standard qualitative methods—are also often used in qualitative health research. However, in some instances the condition of the participants requires that standard qualitative methods be modified, or even that new methods be developed. Participants may be sick, in pain, on a ventilator, or unable to speak; they may have an altered level of consciousness or psychosis; or they may be receiving urgent care, or even be dying. Examples of articles directly describing these methodological modifications are listed on Table 2.3. As noted in Table 2.2, these articles have been submitted from Italy, Canada, Norway, Sweden, South Africa, and Iceland, as well as other countries, thus showing the sophistication of this form of research globally. The research takes place in the community, the home, and the palliative care unit. While the actual discipline of the researcher is not listed in the articles, we can infer disciplinary affiliation from the departments or colleges listed; this research has been conducted by psychologists, sociologists, nurses, occupational therapists, physical therapists, and other social scientists. Let’s take it one step further. Because the disciplines interested in qualitative health research have a slightly different substantive focus, one from the other, each uses different standard methods as the norm in its own area, and may be required to make different modifications to the standard methods. As a result, methodological texts are emerging in qualitative health research for each of these disciplines, as shown in the following examples: • Qualitative methods in public health: A field guide for applied research (Ulin, et al., 2005) • Nursing research: A qualitative perspective (Munhall, 2010) • Qualitative methods in social work (Pagett, 2008) • Using qualitative research: A practical guide for occupational and physical therapists (Carpenter & Sutto, 2008) • Qualitative research for allied health professionals: Challenging choices. (Hammell, Carpenter & Dyck, 2006) • Qualitative research physical activity and the health professions. (Pitney, 2009) • The Sage Handbook of qualitative methods in health research (Bourgeault, Dingwell & Vries, 2010) An expanded list of qualitative health research texts is in Appendix 1.

Author(s), Page #s

Hall, 3-13

Macdonald et al., 1127-1135

Merry et al., 976-986

Morrow et al., 987-999

Abbreviated title

Narrative methods in a study of trauma recovery

Include them and they will tell you: Learnings from a participatory process with youth

Improving qualitative interviews with newly arrived migrant women

Using integrated mixed methods to develop behavioral measures of factors associated with microbicide acceptability

All citations are from Qualitative Health Research, volume 21 (2011)

Qualitative metasyntheses, cognitive interviews and expert reviews, psychometric evaluation, and confirmatory qualitative analyses of the correspondence between quantitative items and original qualitative data

Migrant women for post birth care

Adolescents

Thriving women surviving childhood maltreatment

Participant(s)

Table 2.3. Examples of the Development or Modification of Qualitative Methods.

Behavioral and Preventive Medicine/ USA A psychometrically validated behavioral measure

(Continued on following page)

Nursing/Canada

Nursing/ Canada

Nursing with interdisciplinary team for analysis/USA

Author’s discipline/ Country

Method for improving interviews conducted in another language

High school

Examining how recovery from abuse was reached

Context

Beck, 301-311

Wuest & Hodgins, Argument for testing 151-161 qualitative theories

A meta-ethnography of traumatic childbirth and its aftermath: Amplifying causal looping

Reflections on methodological approaches and conceptual contributions in a program of caregiving research: Development and testing of Wuest’s Theory of Family Caregiving

Analysis of 6 qualitative studies of birth trauma

Health Baraza, a community assembly

Naanyu et al., 14-26

Rooting inquiry in tradition: The Health Baraza as a tool for social research in Kenya

Participant(s)

Author(s), Page #s

Abbreviated title

Family caregiving

Noblit and Hare’s technique (1988)

Gathered information about the success of an HIV prevention program

Context

Table 2.3. Examples of the Development or Modification of Qualitative Methods. (Continued)

Nursing/Canada

Nursing/USA

Medicine/Kenya

Author’s discipline/Country

What is Qualitative Health Research?  49 

In the next three chapters, we will examine in greater depth how the goal, perspective, and domain of qualitative health research qualify it as a unique research area, in fact, as a separate discipline.

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Chapter 3

The Why of Qualitative Health Research: Humanizing Health Care1

In Chapter 2, I suggested that qualitative health research was conducted to see what was going on from the perspective of the patient, to provide rich, inductive description, and to interpret these descriptions. Some people believe that the role of qualitative inquiry is to support quantitative inquiry. That is, that qualitative research provides the foundation from which surveys and questionnaires could be developed, increases the validity of quantitative inquiry, produces models that allow for quantitative testing, and so forth. In fact, many of these people believe that this is the sole purpose of qualitative inquiry and that qualitative research does not stand on its own. However, the most important function of qualitative inquiry is entirely different. Over years of practice, it has slowly risen into my consciousness that this key function is the moral imperative of qualitative inquiry to humanize health care. Qualitative research is always conducted for a reason, most commonly “because little is known about the topic.” This may be true, but there are other reasons. I ask my students if they personally have the same problem as the one that they want to investigate for their dissertation. (For instance, if they want to study bereavement, are they themselves bereaving?) If so, I tell them that studying the problem will not solve their problem. If it is a problem that makes them miserable, do they want to intensify that misery for another year while they dwell on it? This personal reason compounds the loss of an “outsider’s” perspective, because you can’t study suffering if you, yourself, are suffering at the same time. You cannot get outside of yourself to see the other. The most compelling reason to conduct qualitative health research is a moral one—in the name of social justice. I thank Norman Denzin for 51 Qualitative Health Research Research: Creating a Discipline by Janice M. Morse, 51-68. ©2012 Left Coast Press, Inc. All rights reserved.

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recognizing this and making social justice a public agenda within qualitative inquiry (see, for instance, Denzin, 2010). Conducting research as a social justice project is something that must be undertaken cautiously, so that the investigator does not see only what he or she wants to see. The insider’s approach to the problem must be objective—all sides must be represented. The social justice agenda of qualitative health research is one that humanizes health care. While there has been much talk about humanizing health care—and several conferences on this topic—we are still struggling to define it. Humanizing health care is not care outside of medical care, such as complementary medicine. It is not the rejection of medicine, but rather, it is an informal moral code that includes all health professionals and all lay caregivers as well. The first definition of humanization was proposed in 2001 at the International Conference on the Humanization of Childbirth, held in Brazil, November, 2000: Humanization: A process of communication and caring between people leading to self-transformation and understanding of the fundamental spirit of life and a sense of compassion for and unity with: • the universe, the spirit, and nature; • other people in the family, the community, the county and global society; and • other people in future as well as past generations. (Umenai, Wager, Page, et al., 2001) Umenai and colleagues (2001, p. S3) noted that “Humanizing is an important means of empowering individuals and groups to move towards the development of a sustainable society and the enjoyment of life,” and it may “be applied to any aspect of care, including childbirth, the terminally ill, the elderly, the disabled, the poor, health and disease, education, the environment, economics, politics and culture.” The conference proposed that “Humanization be a key concept for the development of a sustainable society in the 21st century” (p. S4), urging all international organizations to promote the concept. While this definition is a good start, it does not tell us exactly what humanizing health care is, but rather, it outlines an agenda. I consider it too narrow: humanizing health care is more than kindness and empowerment. Several researchers have attempted to define humanizing health care by conducting research in the clinical arena. Using a mixed-method design,

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Behrusi, Hatem, Goulet, and Fraser (2011) explored humanized birth care in a Quebec hospital, also examining the facilitators and barriers to the provision of such care. They defined humanized health care as care that was perceived as “security or safety, reassurance, and comfort.” Additional descriptors that emerged during the study were care that has been modified to make it more in conformity with a certain philosophy that was “adapted to women’s needs, that reflects a trust in the woman’s capabilities, that gives control to women over decisions and choices.” The concept of continuity of care was assessed as being “the consistency in the content of follow up, such as, information, advice, explanations, etc.” and having “no interruption in the care received, e.g., different caregivers are seen, and care is a shared approach” (p. 8). We are now getting closer to a definition, but I still argue that humanized health care is more than excellent care.

Todres’ Human Dimensions of Illness In 2009, Todres, Galvin, and Holloway proposed that humanizing health care was the “consideration of the human dimensions in illness and caring.” Over the previous ten years, Todres and his colleagues from the University of Bournemouth had systematically explicated embodied interpretations of the lifeworld of persons who were ill and suffering, and their relatives. Based on the existential-phenomenological traditions, they identified eight dimensions, or “touchstones of awareness” (Todres, et al., 2009, p. 69) for the prevention of dehumanizing practices in health care. This focus on the “aesthetic dimension” of care (Todres, 1998) has brought the substance necessary for the core of humanizing health care. However, Todres is quick to point out that these categories are not discrete criteria, but rather, are more a continuum. We know what happens when these eight dehumanization dimensions are not considered in care: patients and people are treated as objects; they do not comply with “orders”; recovery is impeded; and, while trying to balance the forces of technology and pharmaceutical advances, healthcare professionals depersonalize, demoralize, and dehumanize patients. In general, people are trapped in a peculiar downward spiral in which the goal is longevity at any cost. Patients are willing to trade illness for pain, to be separated from their families for sake of treatment, to accept a deteriorating quality of life for longevity, and to accept treatment of their bodies while disregarding their emotional health—and at the exclusion of their spiritual health.

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Table 3.1. Eight Dimensions of Humanizing Health Care Humanization Dehumanization Insiderness Objectification Agency Passivity Uniqueness Homogenization Togetherness Isolation Sense-making

Loss of meaning

Personal journey

Loss of personal journey

Sense of place

Dislocation

Embodiment

Reductionist body

Source: Todres, Galvin, and Holloway 2009. Used with permission, Informa Healthcare/Taylor & Francis, and Authors.

Depersonalization The main problem identified by Todres and his colleagues is the process of dehumanization in health care. Illness and accidents threaten our mortality and our well-being, evoking concern, worry, anxiety, panic and terror, embarrassment perhaps, shame, and chagrin. These are human emotions, and they are the secondary response to symptoms such as pain, nausea, vomiting, and so forth. In the caregiving relationship—for instance, the nurse–patient, physician–patient, or lay/social networks—human emotion is integral. Minimally, the caregiver must be respected and liked—only in emergency conditions is caregiving accepted from strangers, in particular from professional caregivers. Without this condition, the receipt of care is not accepted. When there is distrust, the person in need of care is noncompliant. Recidivism occurs and health deteriorates. This work by Todres and colleagues (2009) using the phenomenological perspective on the essence of humanizing health care is important, but the subject is broader than they describe. I believe that first, expanding the horizon of their work and then, expanding it methodologically, using other methods of qualitative inquiry beyond phenomenology, would increase its influence.

What is Humanizing Health Care? Humanizing health care is a social agenda for qualitative health research. Humanizing care encompasses a perspective on attitudes, beliefs, expectations, practices, and behaviors that influence the quality of care, administration of that care, conditions judged to warrant (or not warrant) empathetic care, responses to care and therapeutics, and anticipated and

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actual outcomes of patient or community care. For example, humanizing health care has been associated with less suffering and better outcomes, even though the humanizing aspects of health care are often covert, internal, subjective, and difficult to observe or describe. Yet, if these vital components of care are not emphasized, they remain elusive and are omitted from curricula and from professional work. Suffering remains unabated. A humanizing health care agenda includes: • the moral, ethical, political, economic, and cultural aspects of care; • the delivery of health care, including hospital, community, industrial, school, and home settings, nationally and internationally; • care of vulnerable populations such as older people, people who live in poverty, and those suffering from abuse; • methods of evaluating humanizing care at all levels of application and analysis, from individual to population and from domestic to regional to global; and • presence in the curriculum. Therefore, the research focus includes: • individuals’ experiences and conceptualizations of well-being and quality of life; • responses to illness, such as suffering, noncompliance, coping, stress, and pain; • caregiver interaction, for instance, establishing trust, enhancing treatment adherence, breaking bad news, and promoting social support; • caregiver and family responses to caring, such as burnout, empathy, grief, and bereavement, and the supportive relationship; • the macro-level contexts in family, community, and organizational systems, such as support for infant feeding, and the micro-level contexts, such as patterns of touch or conversations (Morse, 2011). But humanized health care is slow in evolving, and it does not occur from external pressure alone. The giant push is coming from qualitative inquiry, documenting social injustices in the health care system, as corroborated by participants in large multidisciplinary research programs. And while humanized health care is underfunded and often unrecognized, it is qualitative researchers who have demonstrated, for example, that infants do in fact feel pain and what the corresponding pain behaviors are, that the elderly can be cared for safely without restraints, and that mothers can indeed manage lactation and still be full-time employees. This list could be much longer, but we have not stopped our research to take stock.

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Still, the change is frustratingly slow. For instance, although research showed the lack of attending to psychosocial needs—human needs—in trauma care, the particular research that revealed that talking patients through using the Comfort Talk Register enabled conscious patients to bear the shock of injury and the excruciating pain of subsequent trauma care is now fourteen years old (Proctor, Morse & Khonsari, 1996; Morse & Proctor, 1998), is not taught to students, and has not yet been formally adopted into practice. Much of our research languishes in journals, and there is a prevalent attitude that it “expires” at five or ten years postpublication, whether or not the content remains relevant.

A Social Justice Agenda for Humanizing Health Research A social justice agenda for humanizing health care is not new. What is new is its articulation. For five decades, qualitative researchers have been focusing on the person (rather than the patient) and on the illness experience (rather than the disease). Qualitative researchers have given their patients a voice, documented the patient’s and the family’s suffering, and described the essential work—and exhaustion—of caregivers. While qualitative researchers have focused on the person, they have also included the subjective domains of the family, the home, the workplace, and the community. They tried to keep their research sensitive to the person’s gender, age, culture, and other demographic variables, which we call “context.” Researchers have struggled to develop methods that enable a valid and realistic depiction of the lives of those represented, so that what is known as the “subjective aspects of health care” may be considered—and even provided for—in health care. Researchers have watched as primary care, humanistic care, holistic care, person-centered care, and individualized care have flashed by in texts, in classes, and to a lesser extent, in practice. And we have tried to balance the forces of technology and pharmaceutics as they depersonalized, demoralized, and dehumanized patients. With the exception of qualitative researchers, most people stood by as health care became so aggressive that the treatments were sometimes worse that the diseases themselves. We gasped as care became so expensive that, in the United States, it has become unobtainable to many. And we noted that when care can only be provided for some, it loses its meaning for the others. From this perspective, the formalization of humanizing health care is a monumental start to challenging the status quo. I believe that our qualitative work from previous decades will now come to the fore and coalesce

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to form a strong new paradigm for the provision of health care—one in which the patient’s thoughts, feelings, and wishes will be given credence; one in which the family and others loved by the patient will participate more fully in health care and the decisions that need to be made; one in which caregiving will be valued and considered as a part of the treatment; and one which will be affordable, accessible, and available to all.

The Societal “Push” for Humanistic Qualitative Research The values that underlie humanistic health research did not suddenly arise in 2012, but have been challenging the health care system for at least four decades. Qualitative researchers did not do it alone, but rather were a part of social change involving volunteer groups, journalists, policy makers, and others. In the 1970s, women—lay women initially, not health professionals—demanded that, when giving birth, they be treated humanely and kindly. In demanding humanized obstetrical care, these women, researchers, clinicians, and others together achieved astonishing changes. Birthing centers arose outside of hospitals, and midwifery became increasingly legalized; analgesics were refused, and natural childbirth became a real option. A similar change occurred for the dying— palliative care became generally available. Medicine has also been forced to make changes, legally: the patient’s right-to-know and privacy laws have altered the physician–patient interaction. Technically, patients have the right to select their treatments and, at least in Oregon, the right to determine when they will die. Technically, elderly patients can no longer be restrained or be forced to accept treatments or remain in hospital. We are painfully aware that hospitals per se are an environment that may cause unintended harm. Bacteria, viruses, incorrect treatments, risk of falling, pressure ulcers, or even complications of bed rest have serious iatrogenic consequences, and a huge movement is now directed toward making hospitals safer. Some have noted that the cost of elder care in the United Stated is now so atrocious that it is cheaper to live on a cruise ship than in a nursing home (Parker, 2004). Perhaps the cost of elder care will be the next area that will be challenged. Humanizing Changes Arising From Qualitative Health Research Before we examine this new paradigm of humanizing health care, I would like to take a look at care as it has been and is presently provided. Rather than considering the usual indicators of quality of care—that is, epidemiological statistics of morbidity and mortality or the results of clinical

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trials showing the efficacy of treatments—I would like to show you the results of qualitative inquiry, results that reveal how we are presently caring for patients. In the present system, we are dehumanizing, demoralizing, removing dignity, hurting, and harming. It is a system with the unwritten rules of “You have to be cruel to be kind” and “It’s for their own good” and with the “We know best” mentality. As noted earlier in this chapter, some things like birthing were huge in their ugliness and now have been “corrected”; however, other things remain huge and have not been corrected, because they are hidden from public scrutiny. The consumers—the patients—have no control, no advocates, and no family present at the particular moment when the medical management of birthing is taking place. Or else they have no choice when urgent, emergency, lifesaving care takes priority over personhood. Most times these undesirable things remain unchallenged because they are unseen, unnoticed, unknown, or give us a feeling of discomfort and helplessness. Finally, some of them are simply so subtle that they cannot be identified, located, or named. We simply sense that something is wrong. It is in the identification of these hidden phenomena that qualitative inquiry makes its greatest contribution, for it gives us the methods and the means to “get below the surface,” to reveal what cannot be seen. We use microanalytic techniques or indirect indicators, such as emotion, or interpretative means, such as exploring metaphors to study the subtle, the subliminal, that which is beyond our awareness, and to reveal what is actually there.

Qualitative Health Research Agendas Enable the Humanization of Health Care Qualitative health research agendas must come from the social justice perspective, with the goal to implement changes through policy, clinical interventions, and new approaches to care. Some of these approaches are inherent in the method itself; others may result from the overt or covert role of the investigator. Qualitative health research describes the status quo or, from the patients’ or families’ perspectives, serves as a sensitizer as others read the work, describing the “state of things” for those with a moral conscience. The researchers provide insider evaluations, serve as advocators or communicators for the patients or community, and provide concepts and theories for the organization or administrations of care; they even make moral comments on the discipline.

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Qualitative Health Research Descriptions Serve as Sensitizers for Those With a Moral Conscience In Chapter 1, I discussed how important thick description and microanalytic descriptions were for qualitative inquiry. Detailed description of the status quo, records, documents, and illustrations may become a part of the permanent record of the institution. But importantly for humanizing health care, description also sensitizes others. Depending on how the description is written and what is emphasized or de-emphasized, certain features may be brought to the attention of the public, the policy makers, or other health professionals. Things that are highlighted may surprise and delight, or may shock, dismay, or disgust readers. If the work is evaluative, the findings may be used to praise or to develop remedial action, with the present report retained as baseline. Example: Breastfeeding mothers who are returning to work When doing my dissertation in Fiji, I found that nursing mothers nursed their infants “part time” yet maintained lactation indefinitely, contradicting the belief in the Western world at that time that, if they did so, their milk would “dry up.” In the 1990s, I conducted a series of studies with Margaret Harrison and Joan Bottorff on mothers’ management of lactation when working. We interviewed sixty mothers prenatally, all of whom intended to return to work and to breastfeed their infants, and then interviewed them again following birth, and monthly until they weaned their infant or the infant was twelve months of age, whichever came first (Morse & Bottorff, 1989). These interviews were often both funny and sad. Coworkers did not allow mothers to express their breasts in the staff lounge, and mothers were relegated to the washroom, to sit on the toilet. Pumped breast milk was not allowed to be stored in the refrigerator. Mothers’ work schedules were such that they could not leave their posts to go and express their breast milk, and breasts often leaked at inopportune times. Our interpretation of coworkers’ attitudes towards nursing mothers was: • Breast milk was considered a “nonfood,” and contaminated others’ food in the refrigerator. • Because breast milk was not only a nonfood, but also classified as an excretory product, mothers were relegated to the toilets to express their breasts. Our study contained many recommendations for employers to make it possible for nursing mothers to maintain lactation when employed.

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Most interesting was the attitude of others toward breastfeeding and weaning (Morse & Harrison, 1987). Often the time of weaning was not the mother’s choice, but occurred because of outside pressures. At first, everyone was supportive of the nursing mother. Then, when the infant was about six months of age, friends said, “When are you going to wean?” About eight months of age, the mother and the mother-in-law would say to their daughter, “Now dear, if you weaned baby, he could stay overnight with me.” Most surprisingly, when a baby reached twelve months of age and the father saw his wife nursing, he said, “What’s a big boy like that doing there!” Our data represented societal attitudes toward the nursing mother. We called this process social coercion for weaning, suggesting that if the health departments wanted to increase the duration of breastfeeding, pronursing advertisements should be targeted toward the fathers and others interacting with the mother, rather than to the mother herself. Humanizing health care? Moving toward making nursing the baby possible and normal is only one step, but an important step. Qualitative Health Research Serves as an Advocator or Communicator Simply recording “what is going on” is often enough to stir people’s emotions, in the same way that a photo of a starving child in Africa will shock and elicit a generous response from a donor. The problem is that our theories, our perceptions, and even our knowledge may be “not quite right.” For example, until the early 1980s, we were taught that infants did not feel pain, that their nervous systems were immature. Consequently, many painful procedures were conducted on infants (consider circumcision), and postoperative infants in hospitals were undermedicated. Qualitative research was a way to explore the infants’ responses in a painful situation and eventually led to a correction of the theory. Example: Do infants feel pain? This question was asked by Judith Côté, a neonatal intensive care nurse, who observed that very painful procedures—even inserting a chest tube—was conducted in newborns without analgesia (Côté, Morse, & James 1991). Her research design would now be considered a mixedmethod design. She chose four full-term infants who had received major chest or abdominal surgery twelve hours previously, and videotaped them for twelve hours. She then qualitatively identified all of the infants’

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movements, external stimuli, and care practices to develop a coding scheme. The quantitative portion consisted of coding each infant and factor analyzing these data to cluster behavioral responses, which varied from sleeping to distressed. Painful procedures occurred with a hard cry and distressed response. But Judith noted something more: When she showed her tapes to her colleagues and at conferences, people said the tapes were enough. There was no doubt that these infants were experiencing pain. This was one of many studies conducted by many investigators. In this case, the correction of the theory occurred rapidly, and changes in clinical practice quickly followed, thus humanizing care for infants. Qualitative Health Research Contributes a New Perspective to the Development of Health Science One of the most important and least practiced qualitative methods is the development of concepts for the enhancement of humanizing care. These methods are usually efficient, as they generally use published literature as data, exploring other researchers’ conceptualizations of the underlying values and assumptions and exposing the unsaid, the perspective, and the hidden agenda. Example: Caring as a concept and the concept of caring Since the 1990s, caring has been a predominant paradigm in nursing and other health care research. I was uncomfortable with care as the “essence of nursing” (Leininger, 1978), for it was a nurse-focused rather than a patientfocused concept. Using a comprehensive method of concept analysis (which later became “pragmatic utility”; Morse, 2000a) and working with a group of students, I analyzed the perspectives of all of the major nurse theorists (n = 35) at that time (Morse, Solberg, Neander, Bottorff, & Johnson 1990). The theorists’ initial use of caring could be sorted into categories according to the epistemological derivations of their perspectives. These perspectives were caring: as a human trait, a moral imperative, an affect, an interpersonal interaction, and a therapeutic intervention. The outcomes identified were the patients’ physical responses and/or the patients’ subjective responses. Next, we traced the theorists’ view of the process of caring, and described the methods and outcomes of caring and the changing nature of the caring relationship, with these pathways linking the categories of caring. Such an analysis clarifies the various meanings and uses of caring within the caring professions, as well as its usefulness as the central paradigm.

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For instance, if nurses must become emotionally detached from their patients in order to perform a painful procedure, “then the concept may not be useful enough to retain its lofty position as the ‘essence of nursing.’ If the question cannot be answered or if a negative answer is forthcoming (that is, a care-less nurse can still provide satisfactory care), then the concept of care is inappropriate or inadequate to stand alone as the central or encompassing theory for nursing” (Morse, et al., 1990, p. 12). Qualitative Health Research Identifies/Documents Critical (Life-Saving) Actions in Care In the example in following section, the intervention was observed and studied in three trauma units, one in Canada and two in the United States. Yet this intervention—assisting the distressed trauma patient to maintain control, which is so critical for reducing morbidity—is not documented in any text, included in job descriptions, or considered by nurses to be “a part of their work.” Example: Talking through—The Comfort Talk Register (CTR) When I started interviewing trauma patients about the care they received and about trauma resuscitation, they told me things like, “I just heard the nurse’s voice and held on!” Clearly something important was happening in the trauma room that I did not know about, and I received permission to go and observe traumas. There, when the patient was distressed and in severe pain, I observed the nurse talking the patient through the painful procedures. The nurse positioned herself so that her face was parallel to and approximately eight inches above the patient’s. If the patient had his or her eyes open, the nurse held his or her gaze. The nurse also held the person’s hand, or placed her hand on the person’s shoulder using firm palmer touch. Then the nurse responded loudly to any utterance that the patient made, using a particular high–low intonation: “You’re okay,” “Just a little bit longer,” “There, there, there.” When a patient is very shocked, I do not think the patient even hears the nurse’s words, but is responding to the vocal register—which we called the Comfort Talk Register (CTR; Proctor, Morse, & Khonsari 1996). The CTR (“talking through”) helped the patients maintain control, despite the pain, and the additional pain of treatments. In contrast, videotaped resuscitation of care provided without a nurse there for the patient showed the person becoming increasingly distressed, losing control, and fighting the caregiver—a dangerous state that exacerbated injury. In addition, the “talking through” appeared to pace the medical care, with one procedure given at a time.

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Is “talking through” used outside trauma care? Recently, researchers examined mothers in second stage labor (Bergstrom, Richards, Morse, et al., 2010; Bergstrom, Richards, Proctor, et al., 2009). The CTR is also used to help distressed, laboring mothers maintain control and to reduce their distress. We could not conceive of a trial to show that using the CTR actually saved lives—the patients were too complex, there were too many variables with the intensity of the intervention, and a huge sample was not possible. Although we could not compare care with and without CTR, this research design is adequate to justify an implementation that involves hiring an additional staff member to “be there” for the patient, and serves as “commonsense evidence.” This subject will be discussed further in Chapter 4. Some may argue that an additional staff member for each shift is costly, but remember that care is being provided more swiftly and safely and the patient is less distressed. Qualitative Health Research Provides Moral Commentary on Removing Harmful Practices and Creating Humanizing Change While qualitative inquiry should not be conducted to solve one’s own problems, it is often conducted to address the problems of others or societal problems. We find ethnographies of poverty, starvation, and prisonerof-war camps. We read of the trafficking of women, of spousal or child abuse, and of abduction. And we read of individual injustices, such as the study described in the following section, which examined the application of restraints on the elderly. We had hoped to explore the effects of applying restraints, but it is not ethical to apply restraints and then to study the person’s increasing psychological distress at being “tied up.” One can, however, study the effects of removing restraints, by selecting patients who are normally restrained and then recording their responses to the removal of the restraints. The researchers’ stance underlying this grant was that it was immoral to restrain elderly patients, yet staff insisted that they did not know how to provide safe care for the elderly. By exploring the removal of restraints, we would be able to document (a) changes in behavior, and (b) if safe care could indeed be provided (Morse & McHutchion, 1991). An Example: Un-restraining psychogeriatric patients Until the late 1980s, the use of restraints was common practice; they were used to keep the elderly in bed or in their chairs and to prevent them from wandering and falling. The elderly were tied to their beds or their chairs, with straps around their waist and chest, and sometimes also their

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wrists and ankles, so they would not attempt to get out of bed and possibly fall. Restraints did keep patients from falling, but they also gave rise to numerous physical and psychological problems. The immobility caused pressure ulcers, skin abrasions, and even pneumonia, and also resulted in muscle wasting, and the psychological effect of being tied up and the lack of freedom to move caused the elderly person to rage. Of greatest concern, patients who were restless, confused, and restrained still tried to get out of bed, and occasionally they strangled and died, tangled in the restraint, in the side rail, or between the mattress and the bed. We researched this problem by studying two residents who were normally restrained, videotaping them for one week with the restraints on and one week with the restraints off. The video camera was mounted on the ceiling in such a position that, if the curtains were drawn around the bed for personal care, the camera was obscured. A second camera was placed in the day room, providing a view of where the resident usually sat. Consent for taping was obtained from the public guardian and the residents’ relatives, and the residents were informed. For safety reasons, the cameras were remotely monitored in four-hour shifts. When the safety of the resident was a concern (when the restraints were removed), a junior nurse observed from behind a curtain close to the bed, as a “catcher.” The tapes were first analyzed qualitatively to develop a coding system. Then we moved to qualitative measures to detect differences in movement before and after. We found that, when restraints were removed, sleeping positions changed and the person was less aggressive. Most importantly, we found that it was possible to care for an unrestrained resident safely (McHutchion & Morse, 1989).

The Pragmatic Goals of Qualitative Health Research From the values and examples described, we can identify pragmatic strategies and methods that will assist us in achieving our aims. Elicits meaning and “gives voice” to participants Researchers elicit the meaning of illness from the sick person. Some of this research is intimate and close to the participant’s experience, with the researchers describing the experience, using exemplars, the words of the participants and their loved ones, as they reveal the pain and distress of symptoms and the meaning of those symptoms to their lives and the way they lived. The research deals with both dying and seeking health. Researchers address safety issues, including threats to the self. They address

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all phases of the life cycle and deal with family groups and interactions. They include acute and chronic illness, disability and rehabilitation, trajectories of recovery and of becoming healthy, and the nature of health itself. Patients are vulnerable and do not have the “voice” to express their experiences, needs, and emotions. They cannot express what it is like to be ill, uncomfortable, distressed, or dying in an institution or in their home; or what it is like to be facing disability or death, adjusting to being ill, or living with illness and their responses to treatment. Researchers are also interested in patients’ health seeking; their bodily changes or disruption; and their descriptions of discomfort, symptoms, and experiences of recovering from illness. Treatment is not always “successful.” How well outcomes are achieved depends on the patients’ comparison of their experiences with others’, and how successfully they have regained normalcy following treatment. How well patients are able to regain a sense of control of their lives depends on individual characteristics. Qualitative health research uncovers nuances of the illness experience, reinvestigating needs and opportunities for interactions and interventions. Lay and professional caregivers provide us with details of their experiences of knowing the patient before the illness or accident, of caring for the patient, and of how they respond when they return home and to the community. This adds to our understanding of the meaning of illness. Qualitative researchers focus on the sensitizing and humanizing issues in health and illness. We include emotions in our analysis and do not gloss over a researcher’s experience and responses to collecting data. We focus on the meaning of the illness or the event to the person. Although we boast that our research is holistic, we actually delineate the part we are interested in, focusing on particular phenomena or processes within the context of health or illness. In this way our research is not entirely holistic, nor is it scoped. Rather, it is holistic in that we do consider the phenomena in their entirety, in context, rather than by stripping the variables. Our descriptions provide the caregivers with understanding, that is, with something comprehensible, and even something with which the caregiver may identify or imagine. Some consider this the sole purpose attributed to qualitative inquiry, for without the systematic investigation into this meaning of illness and health, our care would lack humanistic perspectives. Health professionals have been taught that care must always be provided as person-centered and individualized, within the patient’s developmental and cultural frame of reference. Thus, qualitative research is consistent with our disciplinary perspective, and allows us to com-

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municate the patient’s experience to caregivers and others. Such information makes caregivers more empathetic and eventually influenc, the quality of care. Micro-analytically see what is actually going on Micro-analytic perspectives provide a new lens. By video recording and then studying the movement, either frame-by-frame or by clusters of movements, qualitative researchers can examine touch, gait, expression, and other patterns of movements and responses in the interaction that cannot be seen using participant observation. The methods of human ethology open an extraordinary perspective in our research. The micro-analytic goal in qualitative inquiry is more than watching barely detected movements. It is also attention to extraordinary detail that enables rich descriptions of change over time, while at the same time attending to mechanisms of change and the antecedents and outcomes of the process. Detailed descriptions of the transition points show the rationale or instigator for change and provide a microanalysis of the mechanism for change and a rich description of the changed state. This approach enables the emotion and context to remain in the data. It enables us to theorize from these observations and analyses. Thus it expands the power of our lens. Interprets from the other’s perspective One of the most important skills in qualitative analysis is the ability to interpret text, that is, to discern the implications of the interviewee or to “read between the lines.” Skills include techniques from semiotics and cognitive psychology, such as the analysis of metaphors and other signifiers, the examination of implications, and the linking of parts of the text with other parts and with the text of others to discern the shared meaning. Describes the experiences and contexts both in present and over time by delineating trajectories Researchers are fascinated with the worlds of the acutely and chronically ill: the dramatic changes in one’s self, to one’s lifestyle, and to one’s being that occur when becoming ill, as in the complex emotions that occur when diagnosed with cancer. The feelings of shock, fear, anxiety, sadness, and depression are overwhelming. Patients experience a loss of self, a loss

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of control, a loss of power to influence the situation, a loss of independence, and feelings of dependency. Qualitative inquiry enables rich descriptions of these changes over time, while at the same time attending to the mechanism of change. Investigating the transition points provides a microanalysis of the mechanism for change and a rich description of the changed state. Grounded theory was developed by Glaser and Strauss (1967) with Jeanne Quint Benitolle, specifically for the study of dying, which in itself is a process of change (Glaser & Strauss 1965, 1968). Identifies and develops relevant concepts and develops theories Closely associated with interpretations is the development of concepts and theories for qualitative data. Qualitative researchers work inductively, but with the intent to develop a concept or mid-range theory as the outcome of the study, rather than a description of “what is going on,” as in the case of simply describing the illness experience. Alternatively, these researchers may approach the research somewhat deductively, using concepts or a theoretical framework to structure the research as they explore the topic. Note that the researcher is seeking commonalties and patterns in the experience, while attempting to use increased levels of abstraction to expand the generality of their research. For instance, researchers often began their inquiry looking at concepts in a particular context, such as stigma in the context of HIV/AIDS patients (Lekas, Siegal & Leider, 2011), or normalization at home or in the palliative care unit (Hadders, 2011). Researchers examined the emotional responses to cancer diagnosis and the treatment and support systems used (Kelly & Ganong, 2011). Others studied how the self was reconstructed after brain injury (Gelech & Desjardins, 2011) or a burn (Lau & van Nieerk, 2011). And they explored rituals and patterns in recovery following spinal cord injury. Knowing this, we then see the main concepts that the researchers are targeting in the titles of their research articles: “negotiating,” “normalization,” “grief,” “self,” “life-balance,” “tuning-in,” and of course “stigma.” Identifies appropriate interventions and examines the effect and/or impact of those interventions The last perspective or purpose of qualitative health research is to identify interventions and the outcomes for using the interventions. Often clinicians’ actions are therapeutic but are not recognized as interventions. For instance, talking through may be extended to other distressing proce-

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dures, such as the insertion of a nasogastric tube. We were able to show that when “talked through,” the insertion was more successful and required fewer attempts at insertion (Morse, Penrod, Kassab, et al., 2000)

What Does Qualitative Health Research Do That Quantitative Methods Cannot? From the discussion in the preceding section, the differences between qualitative and quantitative inquiry for “making a point” to policy makers and for establishing evidence are clear. Whereas quantitative researchers can provide proof and evidence of the distributions, correlations, and causation, the qualitative researcher provides a different kind of evidence—one that illustrates, as do some aspects of journalism, and that emotionally arouses and provides instant comprehension. As I will discuss in Chapter 4, it provides a common-sense type of information that removes the necessity for extensive and costly data collection. This emotional and comprehensible information about health care keeps the health care agenda for humanizing health care at the fore. The ethical–moral aspects of care are important, yet are easily lost in a sea of numbers with huge price tags. Qualitative inquiry is not very good for estimating health care budgets, but keeping the person and his or her daily life on the policy-negotiating table enables the humanization of health care. Humanizing health care adds an important dimension and direction for qualitative health research. It provides a moral dimension, sensitizing us to significant issues; it serves as an advocate for the vulnerable, communicating their concerns; it critiques health science; it identifies and documents critical lifesaving actions of care; and it provides a moral commentary on removing inhumane practices and creating humanizing change. Can such an agenda, conducted in a specialized area, be conducted using qualitative methods? Or must they be adapted for use with the ill?

Chapter 4

The How or the Methodological Challenge of Qualitative Health Research

Research into the intimate, experiential, and interpersonal aspects of illness, into caring for the ill, and into seeking and maintaining wellness introduces extraordinary methodological challenges. Because the subjective, emotional, and interactive components of being ill and of care contexts are challenging to study, with few exceptions researchers have avoided examining this critical part of care. Participants, whether caregivers or care recipients, have qualities that make participation in research extraordinarily difficult. Yet, this research and the developing knowledge from these participants will guide practitioners in framing optimally safe, effective, and satisfying interactions with people and in creating environments for healing and well-being. Qualitative health research and attaining an understanding of humanizing care requires a dedicated research focus and a community of committed researchers using a multiplicity of descriptive and interpretative approaches. This perspective is attained in the research method selected. Because the perspective and the context of qualitative health research are not the same as for qualitative inquiry in general, the research methods of qualitative health research often need to be adapted to the research conditions. Restrictions extend from the condition of the ill participant to institutional legislation protecting patients What are the “conditions” that make conducting research difficult? Let us consider first the topic of health itself, then the participants (usually care recipients) and the caregivers, and finally the context of the research. In the last section of this chapter I will discuss specific methods that must be adapted or are particularly useful for conducting qualitative research in these settings. 69 Qualitative Health Research Research: Creating a Discipline by Janice M. Morse, 69-93. ©2012 Left Coast Press, Inc. All rights reserved.

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Studying “Health” Many people interested in studying health begin their research by asking people, “What do you think health is?” Researchers keep doing it over and over—with the elderly, with adolescents, with this cultural group or that, with different socioeconomic groups, and so forth—and the resulting data are mostly the same. The problem with this research is that “health” is a scientific concept. Somewhere, a scientist, or a group of them, have defined health and obtained agreement from the World Health Organization and other organizations. Consequently, what health is, its definition, and the means of attaining health are carefully taught to everyone, from the earliest years, along with the national anthem. It does not stop there. What you must do to stay healthy is also taught (brush your teeth, eat properly, go to bed early, etc.). Therefore, asking people to define health is rather like a sixth-grade examination and does not produce very interesting data. But note that I said “asking.” If researchers were to observe, their research might be more exciting. Think of the dieter with a box of chocolates stashed away. Would you get accurate answers from her about her diet, or would the data be more accurate if you observed? There is often little congruence between what one is taught and recites, and what one actually does. Therefore, the golden rule when conducting qualitative health research—or for any qualitative topic, for that matter—is to think about what you might find out before you begin your study. If your topic is obvious, is a rite of daily living, or consists of knowledge that is commonly taught in school or church, consider carefully how you will get beyond that layer and access the emic, that is, the people’s own viewpoint, rather than the status quo. Health is a topic that may be perceived very broadly—from the scientific perspective of health, from illness to healthy dying, from the physical to the psychosocial to the spiritual health, and from health in the individual to the family and to much larger groups. It includes definitions, behaviors, concepts, and theories. There is much scope and variety in research methods to approach health without conducting research that reports the obvious. Characteristics of Participants The participants in our studies are or have been injured or ill, working toward health, or struggling to maintain wellness. When illness strikes (note the interesting essence of suddenness and force in the metaphor

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“strikes”), people become overwhelmed with changes to their bodies, the threat to their mortality, and the symptoms of the illness. They struggle to comprehend these changes—with what is happening to their body, and how to deal with pain, nausea, fatigue, sleeplessness, and so forth. They struggle with the realization that every day, normal, taken-for-granted functions are no longer possible, and may never be so again. Therapies that are supposed to cure cause a string of unexpected new problems and side effects. Relationships with loved ones are drastically altered, and familiar roles are reversed. Also they worry about finances, tasks undone, and “what will become” of those things outside of the hospital. Those who have been accidently injured may also be overwhelmed with the loss of other family members, feelings of responsibility, and, perhaps, the knowledge that their actions may also have injured others. They may also face possible loss of income, unemployment, and disability. In these situations, participation in research may become an unwelcome add-on, an extra burden that cannot be accommodated at that time. Even the consent process itself may be too cumbersome to comprehend. But of greater concern, because these patients have not come to terms with what is happening—really understood it or psychologically processed it—they are not “good participants.” Once, responding to reviewers’ critiques that we should interview accident victims as soon as possible after their accident, in case they “forget,” our protocol had us interviewing patients as soon as they were able, which we assumed to be as soon as they were moved from the intensive care unit. These interviews were terrible. The patients recited the events in a monotone, and our transcripts read like police reports. We understand now that these people were in a state of enduring, struggling to comprehend what had happened, and suppressing overwhelming emotions. We then sought and interviewed patients in the rehabilitation hospital, obtaining retrospective accounts, and our interviews then were all they should be, containing both subjective and objective accounts that were emotional and descriptive. There may be other problems when studying the experiences of the severely ill. Participants may be unable to talk and express themselves, and therefore may not be able to be interviewed. They may be unconscious, on a ventilator, aphasic, too young (infants), on drugs, in pain, or too fatigued to be interviewed. They may be in a different reality cognitively and may lack memory of the events or be confused and not able to provide the information needed by the researcher. Such research requires a different strategy, such as observational research, and also requires extraordinary observational skills.

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Sometimes, however, the experience of hospitalization works for the researcher who is seeking patient participants. Those who have been hospitalized for some time may be bored and thus be more than willing to participate, simply for something to do. Others, including those who are dying, may appreciate the opportunity to tell their stories to a researcher, so they can be recorded, or they may recognize that relating their stories may help them sort out what has happened. Professional Caregivers as Participants If you choose to interview professional caregivers, nurses, or physicians in the hospital during the workday, they may decline, because they are too busy and have other responsibilities. Or they may agree to the interview, but as soon as the interview starts, they may be called away. The researcher has then only two choices. The first is to arrange to interview health care providers when they are “off duty,” on their own time. This, of course, is not an attractive option to an exhausted nurse or physician, but you may have more luck if you offer them a more convenient telephone interview. The second choice is to change your interview study from an intense, one-shot interview lasting an hour or more, to a “man-on-thestreet” interview, in conversational style, conducted in snippets as they go about their work day. If nurses or physicians can write the time of the interview into their calendar and make arrangements to have their care responsibilities covered, focus groups are a possibility. It also helps if they can be given a monetary incentive; physicians will routinely require at least one hundred dollars per interview to attend. On the bright side, I have noticed that nurses and physicians are excellent participants, and once they start talking, find it difficult to stop. Characteristics of Context Hospital/institutional research There is another reason why doing research in hospitals is difficult, and it has to do with regulations regarding patient privacy. In the United States, such regulations include the Health Insurance Portability and Accountability Act (http://www.hhs.gov/ocr/privacy/), which ensures the security of health information, and the confidentiality provisions of the Patient Safety Rule (http://www.hhs.gov/ocr/privacy/index.html). Therefore, researchers cannot directly access inpatients or clients from a community health center, and must have an intermediary to assist them in identify-

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ing potential participants for their studies. Usually these intermediaries are nurses (but sometimes physicians), and they identify possible participants according to the research criteria and make the initial contact by asking patients if they would like to be in the study. Patients themselves must give consent for the research, unless they are unable (e.g., infants, those who are cognitively impaired, or those who are too ill), in which case their respective guardian may provide proxy consent. All research must be approved by both the researcher’s home institution and the hospital’s Institutional Review Board (IRB). Committees within these organizations will review the research protocol and consent forms in the interest of protecting the patient from harm. Qualitative inquiry, which usually does not involve an intervention or interfere with treatment, is usually considered low-risk research, although interviewing the dying or those in excruciating pain, or observing their care, may cause concern to some committees (see McIntosh & Morse, 2009). Finally, research in hospitals is difficult because there is often no available space to do research. There is nowhere private to interview and, if the interview is conducted in the patient’s room (which is possible only in a private room), there is no guarantee that there will not be interruptions for medications, blood tests, doctors’ visits, visitors, and so forth. Often, there is nowhere for the researcher to work between observations or interviews. Finally, if the researcher is a nurse, it is easy to be trapped into “helping” staff. Once enticed into the assisting role, it is difficult to extract oneself from the important tasks of care and return to being a researcher. Most of the interesting things that you may want to record occur at busy times, and you cannot, at the same time, both record data and help out the staff. Loyalties, friendships, or reporting relationships may get in the way of accurate reporting. Furthermore, it is difficult to really see that which is obvious and familiar. For these reasons, it is recommended that researchers never conduct research in their own units—and preferably not in the same hospital in which they are employed. Hospitals are difficult for the uninitiated to negotiate. On a day-to-day basis, they consist of many official and unofficial rules and norms of conduct, such as hierarchical personnel, rigid routines, and so forth. Some of the codes of conduct are crucial to patient safety, such as infection control and isolation, but they also control who has access to the patient and when. Hospitals have distinct smells, sounds, and sights that are emotionally overwhelming to the uninitiated. They have a confusing array of equipment, and sometimes codes demand haste and urgency and require that those who are uninvolved quickly get out of the way. Those who are

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not professionals working in the hospital must learn these “ropes” before beginning data collection; indeed, Goffman (1961) worked as an orderly for a year before researching Asylums. Working in hospitals, recording suffering, observing agony, witnessing the rush of life-saving interventions, but not participating is bound to take an emotional toll on the qualitative researcher. This research is hard—hard to get in the door, hard to find participants, hard to witness, hard to process emotionally, hard to put into words, hard to interpret, and hard to analyze. Witnessing suffering impinges on the researcher, creating a state of shared suffering. Nurses are adept at blocking such emotional contagion—in which case, you may ask, Are they blocking data? And nurses are adept at consoling participants—in which case, you may ask, Are they altering data sources? However, outsiders who are less adept at responding to such emotional scenes and who are inexperienced at controlling their own responses may put themselves and others involved in their research at risk. For instance, even transcriptionists recording reports of such scenes have been reported to manifest symptoms of post-traumatic stress disorder (Spelvins 2010). Thus, it is important that primary investigators have some system of debriefing for research assistants and others who are new to qualitative inquiry. Haunting stories also haunt listeners. I believe that qualitative research conducted in hospitals is the most difficult of all qualitative inquiry. In this setting, the patient’s state and condition dictates the methods to be used, rather than the question being researched. For instance, if the participant is unable to speak, an observational method, such as ethology, must replace an interview method. Alternatively, the researcher may interview the patient’s significant other rather than the ill person, thus obtaining indirect data about the experience. If the action is too rapid to be recorded by observation (such as during resuscitation, when several things are happening at once, or for instance when exploring touching behaviors), the scene could be recorded on videotape for later microanalysis. Community research Hospital research is only a part of the story. Qualitative health research is also conducted in the community—in community clinics, schools, workplaces, and homes, and through other community organizations. Furthermore, recently researchers have been using the Internet to contact participants, for instance, participants who belong to chat rooms or selfhelp groups or who have written blogs devoted to particular chronic illnesses. Of course, you should not rely on the Internet as a reliable source

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of data. If possible, arrange to conduct the interview by phone or in your interview room, remembering that interviews in participants’ homes may not always be safe. Researchers may address such topics as living outside institutions with chronic illness (for instance, diabetes) or disability (for instance, spinal cord injury). Community-based research may also focus on the experiences of significant others as participants, such as lay caregivers or those who observe the patient. Researchers may explore the effect of an ill member on the family unit, asking how the family members normalize the illness or how the ill person copes in everyday life. Special problems as they relate to health are important topics, and research can address areas such as poverty, unemployment, or even working with a disability, across the lifespan. For instance, one could study problems of living that occur with increasing aging and disability, aging and obesity, aging and poverty, and so forth. Community-based research methods are usually less emotionally taxing than hospital-based methods, but as researchers enter peoples’ homes and lives and as they work with community groups, extraordinary tact and sensitivity are still required. One solution is participant action research, a method that involves the community in the identification of a research problem and the planning and implementation of the project. Our question remains: While the context and the nature of qualitative health research influence the qualitative strategies used—and sometimes the methods—to what extent does the nature of qualitative health research demand that they be adapted, altered, or changed? This is an important question, for if the phenomena that qualitative health researchers study demand changes in methods, then qualitative health researchers will need different methods textbooks, and even different standards for the evaluation of their work.

Methodological Compromise? Qualitative health research requires the modification of methods because of both the conditions and limited abilities of the participants and the contextual features of the hospital. As noted in the previous section, patients’ conditions may demand that a different method be used because of patient fatigue, the interruption of data collection for treatments or physicians’ rounds, visitors, and so forth. In this context, research has the lowest priority. Any and all assessments, treatments, and even visitors have priority over the researcher’s agenda for data collection during the patient’s day.

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Hence, while the methods may appear orthodox (grounded theory or ethnography, for instance), data often must be collected in small increments, with the researcher stopping when the patient appears fatigued or when a treatment is due. Good researchers learn how to compensate for recordings that may be of poor quality because of impaired speech due to a dry mouth, loose dentures, respiratory distress, and an oxygen face mask. Researchers learn extraordinary perseverance and skills, linking data gleaned from diverse sources, such as relatives, chart data, caregivers, and even janitorial staff. Observational methods frequently replace interview methods when the patient cannot be interviewed because of a respirator and intubation, tracheostomy, paralysis, unconsciousness, and so forth. Depending on the question, instrumented data may replace interview data. For instance, if the researcher is examining nurses’ touch with unconscious patients, a mixed-method design may be used, with instrumentation recording indices of the patient’s relaxation response. With infants, ethology may be used, with the indicators to be coded developed qualitatively as, for example, in Côté and Morse’s (1991) infant pain study (which was discussed in Chapter 2) and is an example of using ethology to explore infants’ behavioral responses to pain, and in studies that documented modes of comforting infants in distress (Morse, Solberg & Edwards, 1993; Solberg & Morse, 1991). Ethological methods were also used in the study with Edna McHutchion examining the behavioral response to the removal of restraints from patients in the psychogeriatric unit (Morse & McHutchion, 1991). In the mode of conducting research, qualitative research is extraordinarily difficult. It has been asked whether qualitative inquiry causes emotional distress. Indeed, all respondents cry during interviews—in part because of the nature of the questions asked, for instance, “What is it like to lose health?” I argue that crying is normal, even a cathartic response. It might be more appropriate to ask about the emotional state of the person who did not cry. Do not those who have experienced a devastating experience also have the right to participate in research that asks them to “tell their story?” All patients who agree to be in our studies know intuitively that they will cry at some point during the interview; few are surprised that this happens. Is the emotional distress, then, not a normal response to such research—no more than would occur over a kitchen table with a friend? Many participants have told us that they had not had the opportunity to tell the whole story at once before and that doing so helped them see it as a whole and put it in perspective.

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Issues of Access Because of privacy regulations and the responsibility of the organization to protect the patient, gaining access to a hospital or nursing home to do research is an extraordinarily difficult and time-consuming task. If the hospital is not part of your university system, you may find yourself getting letters of support from the director of nursing, charge nurse of the department or clinic, or the physician in charge, and repeating the IRB approval from the hospital committee. This takes much time and patience. Once all of the procedures have been obtained, allow at least two weeks to find your way around the institution and get to know key players. The goodwill of the staff will be most important to the success of your project. Can you be denied access? Certainly. It has happened to me. Once, the physician in charge of a burn unit denied us access because he wanted to reduce traffic into the unit, and cited risk of infection as the reason to deny us access. On speaking with him, he also cited his concerns with qualitative methods, which he knew about because he had once attended a two-hour conference workshop on the subject. Sometimes there is concern about the qualitative procedures used in data collection. I was also denied access for a project that involved videotaping trauma resuscitation, and the only solution seemed to be to move from Canada to the U.S., where videotaping was done routinely as a part of quality assurance. Several years later I was permitted to videotape in that same Canadian trauma room—but the cost of the initial denial was high. Nondisclosure Because of privacy regulations and of the intimate nature of data and the topics of qualitative health research, qualitative researchers must learn to describe without disclosing identity—to describe without personal descriptors. Some of the standard mechanisms for all researchers may be used: Do not disclose the name of the institution, or even the town in which the research is conducted, and change all names. But this is not enough. In the journal Qualitative Health Research (QHR), we will not publish tables that list demographic tags by participant. For instance, we will not publish a table that lists—participant by participant—the gender, age, marital status, occupation, illness, or duration/stage of illness, because such tags enable the identification of the participants. Of greater importance, we will not allow authors to link quotations, so that a reader cannot go through the article collecting comments made by a particular participant. Some researchers appeal this requirement; in particular,

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those from psychology find such analysis important. And, of course, you may ask, What about case studies? Again, we ask that only pertinent and important data be included in the article, and we hope the participant approves the final draft. Consent As noted earlier, all research is consented to by the patient. If the patient is unable to provide consent, then consent from the guardian may be obtained in proxy. If the procedures are extensive, even if they do not interfere with the patient’s treatment, it may be necessary to inform the physician. If all participants are being obtained from one unit, an efficient way to inform all staff of the research is to provide a summary and a question-and-answer period at the unit meeting. But remember that all staff do not attend this meeting, and you should leave written materials for those who care for patients during the meeting, for the night staff, and for those who are not scheduled to work because of regular days off or holidays. In some circumstances, such as when studying emergency care, treatment prioritizes research consent. When researching trauma care, all staff must give consent before the event, and all those entering the area are informed about the taping. These people include a long list of everyone from consultants to janitors to x-ray and laboratory technicians to ambulance staff. It involves sending a notice to all hospital departments, placing a sign on the trauma room door during data collection, and having a research assistant stand at the door to remind staff of the project and to answer any questions. The patient is then informed about the taping as soon as his or her condition permits, and the data tapes are secured with the quality assurance data and protected by law from a subpoena for a number of days. Consent is obtained from the patient as soon as his or her condition permits; if the patient refuses, then the tape is immediately erased. Even if consent is given, all patient identifiers are removed as soon as possible, the patient’s face is obscured with a mosaic patch, and the original version is destroyed. Collecting videotaped data in trauma resuscitation is one project for which it is easier to obtain consent when the participant is a child. Once the parents’ frantic quest for information is over and they enter a “pacing mode,” the researcher can explain the project and obtain parental consent, usually while both the care and the taping are ongoing. If the child is old enough to understand the research, assent is obtained at a later time. (In my projects, I destroyed one tape that was parent-consented, because

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the child—approximately nine years of age—did not want to be a part of the study. He had been catheterized and could not comprehend how such a dreadful thing could be done to him.) Self-as-Participant These two issues, nondisclosure and consent, clash in the autoethnographic method. It is not possible to write an autoethnography entirely about oneself. Autoethnography always contains information about “others,” and they have not offered consent (or sometimes even been informed) about the study. Their identity is revealed because of their relationship or their incidental link to the author or the event. Despite this possible violation of anonymity in authoethnography, IRBs often consider the autoethnographic technique methods to not require committee review. Sample Size and Certainty If the researcher is conducting research in a hospital and dependent on nurses and physicians assisting in the identification and recruitment of the participants, and if the illness or criteria for participation makes the enrollment relatively sparse, it is tempting to terminate recruitment before one has reached data adequacy and saturation. This temptation has resulted in an inundation of articles submitted to QHR that are thin and in which data have been analyzed through processes of “cherry picking” (Morse, 2010a). Articles that have been written using thin data do not often tell us anything new. These studies merely reinforce commonsense standards. For instance, I do not need a study to tell me that ulcerative colitis is embarrassing or that breastfeeding makes one exhausted. I fear the publication of such studies will make a mockery of us all. Some of these articles may have interesting participant quotations; however, that is what cherry picking is all about, and these quotations do not add depth. Some of these thin articles address fascinating topics—peculiar and rare behaviors—but that does not add to our knowledge base if the article is not well scoped and contains no new knowledge. I do not read these articles and think, “Wow!” Rather, I read them and think, “Oh. So?” The Goodness! and the Certainty Criteria What constitutes a high quality qualitative study? As an indicator, the main criterion for my acceptance of articles in QHR is that they surprise

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and delight the reader. They must have some new insights to contribute and they must have enough data to be convincing. They leave the reader with the impression that the authors are certain about their claims. The new findings are clear, exciting, and profound, and they earn their way into social science knowledge because they are useful and make sense.

Common Criticisms of Qualitative Health Research Premature Submission Premature submission is the converse of the acceptance criteria discussed in the immediately preceding section, and is the major reason for rejection by QHR. Researchers, under pressure to publish, cease data collection before saturation is reached, having sampled too few participants, conducted shallow interviews (perhaps semi-structured rather than unstructured), analyzed data inappropriately (perhaps used themes rather than content analysis or vice versa), used a shortcut method (I have read methods called “approaching grounded theory”), failed to conceptualize, presented their results in a series of quotations, and/or, finally, failed to link their findings with the literature. Some of these problems will be discussed below. Lack of Theoretical Development Many articles submitted to QHR are “telling the patient story” or “giving the patient a voice” under the guise of narrative inquiry or interpretative phenomenological analysis. These articles are derived from the stories of several patients (often ten or fewer). But the main characteristic—and their major problem—is that the articles consist primarily of quotations from the patient. There is a lack commentary by the researcher, a lack of description, a failure to synthesize data, no effort to develop concepts or theory, and an absence of linkages to what is already available in the literature about this topic in the discussion. It is conceptual and theoretical development that makes an article generalizable and significant and that earns it a place as contributing to our understanding and perhaps to caregiving. These concepts and theories do not have to be new; however, if someone else has already identified the concepts that you have found, you must, of course, use the published label. That is, you must name the concept as it was originally named. This is the way that knowledge accrues. Publishing with your own label stunts the development of qualitative health research and causes “theoretical congestion” (Morse 2000b).

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The Weaknesses Inherent in Qualitative Inquiry Render it Worthless The age-old battles and stigmas against qualitative inquiry remain ongoing and have been used as the reason for excluding qualitative research (see Williams 2001). The criticisms of qualitative inquiry discussed in the previous sections become the means of those who do not “like” qualitative inquiry and who use the “weaknesses” to block access of qualitative researchers to funding or publication or even to block the incorporation of qualitative research into the curricula. I am not certain how to approach a hospital physician or committee that bases the rationale for excluding research on misinformation about the quality of qualitative methods. It is ironic that, when writing a press release about the efficacy of their care or asking for foundation funding, these same physicians will ask a patient to take the podium and “tell his or her story.” They therefore see the value of the case study and the patient’s voice to make a point in some circumstances, but they exclude research that uses these same strategies. This issue will be discussed more fully in Chapter 7 in the discussion of developing responses (“elevator speeches”).

The Rigor Debates: What is “Good” Qualitative Inquiry? Defining “good” qualitative inquiry is difficult, and it has gone through various iterations. First, resenting and refusing to use quantitative outcomes and standards, Lincoln and Guba (1985) established criteria. Then, in the 1990s, these developed into standards and checklists. Now, those are being discarded in favor of principles (Barbour, 2001). While this early work moved the debate along extensively, it also caused some stumbling blocks. Students, when asked about the reliability and validity of their studies, replied that “qualitative researchers do not use reliability and validity,” referring to Lincoln and Guba’s work on trustworthiness (1985). They therefore gave the impression to a naive examiner that such concepts as reliability and validity were of no concern to qualitative inquiry, despite Lincoln and Guba’s statement that they were “analogues” (p.189). What the students meant (or should have meant) was that in qualitative inquiry, reliability and validity were determined differently than in quantitative inquiry. Standards and checklists of the 1990s consisted of long lists of strategies used by qualitative researchers, which, if used and included in the article being reviewed, determined the project to be rigorous. Unfortunately, these checklists also caused harm, because the strategies that were used to determine rigor depended on the type of qualitative inquiry being evaluated. No project used them all, nor should they have done so. Yet re-

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viewers, not knowing what strategies were appropriate for certain designs, interpreted missing data as faults and flaws. Unfortunately, in this way, these standards made some of our own reviewers qualitative researchers’ worst enemies. It took several editorials to explain that such an approach was not appropriate, and still there are gaps in important places. One such example is the use of inter-rater reliability in qualitative analysis. If the researcher has been working descriptively and if semistructured interviews are used so that all participants are asked the same questions in the same order, inter-rater reliability is appropriate. However, if the interviews are unstructured and interpretative analysis is being used, one piece of text may signify and infer something important to one coder who had conducted and read all of the interviews, yet, to another coder who just arrived on the project, the same text may mean nothing more than what the words actually say. Who is correct? They both are. But if the purpose is to code interpretably, reliance on the coder who does not understand the implications of the text will keep the analysis shallow and the results insignificant and possibly invalid (see Morse, 1997a). Review Criteria Used by Qualitative Health Research For approximately twenty years, QHR has used a template for reviews that has remained virtually unchanged. Its strength is the open-ended questions that target certain areas of the manuscripts and ask questions of the reviewer so that, according to the qualitative method used, the manuscript can be appropriately evaluated. This template gives reviewers the space to reflect on the actual worth of the article and give constructive feedback to authors. In this journal, the reviews are forwarded to the authors unedited, on the assumption that that if one person has a certain reaction to the article, others may also. All three reviews are usually returned to the author; often the opinions about their article are contradictory, and the author calls in a “what shall I do?” conundrum. I tell the authors that it is their article, and that they should consider these responses and make their own decisions about the way they revise their article. However, the decision for acceptance or rejection is not usually a black-and-white judgment. Reviewers are asked to recommend one of the following: 1. Accept the manuscript with minor revisions 2. Tending toward acceptance, revisions required 3. Tending toward rejection, extensive revisions required 4. Reject

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5. Submit to another journal (recommendation): These options give the editor a method to weigh the reviewers’ evaluations and work with various opinions about the article. Also considered is the analysis: Is it a topic that is often discussed or is this a unique manuscript? New findings and new topics are valued. Figure 4.1. List of Review Criteria for Qualitative Health Research 1. Importance of submission. What are the manuscript’s strengths? Is it significant? Does it contain new and unique information? 2. Theoretical evaluation. Is the manuscript logical? Is the theory parsimonious? Complete? Useful? 3. Methodological assessment. Inductive approach? Appropriate method and design? Is the sample appropriate and adequate? Are data saturated? Theoretical analysis? Linked with theory and/or praxis? 4. Adherence to ethical standards? 5. Manuscript style and format. (Please evaluate writing style, organization, clarity, grammar, appropriate citations, etc.) 6. Other Comments. Please give specific advice to the author on how to improve the manuscript. For articles describing qualitative methods: 1. Relevance of article to journal purpose. Is the article focused on qualitative methods? 2. Quality of information. What are the manuscript’s strengths? Is the manuscript significant? Does it provide any new information or insights? Is it innovative/creative? Is the information accurate? 3. Quality of writing. Is the article clear? Concise? Logical? Grammatically correct? 4. Quality of documentation. Are all references in the body of the text cited in the reference list? Citations complete? APA style? Necessary copyright permissions obtained? Only essential references cited? 5. Adherence to ethical standards. Permission/consent obtained from participants and institutions? 6. If the article includes a research report. Appropriate methods and design? Inductive approach? Adequate and appropriate sample? Are data saturated? Theoretical analysis? 7. Other comments. Please give specific advice to the author about how to improve the manuscript.

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In this way, the journal publishes healthy articles while dodging the debates that swirl around in conferences: What is truth? What is rigor? And what about reliability and validity?

Methods Most Frequently Used in Qualitative Health Research The strategies that qualitative health researchers use may be the same as all other qualitative researchers: we interview, we observe, we create categories and themes, and we use grounded theory, phenomenology, ethnography, and so forth. Thus far there has not been a method that, despite the hurdles that qualitative health researchers must face, has developed solely for qualitative health research to such a level that it has been given a name. However, I think that soon we will have our own methods and criteria for evaluation. Ethnography The goal of ethnography is to describe the experience from the patient’s, or the emic, perspective, framing it in the context of the study. Ethnographers are interested in values and beliefs, and in explanations for behaviors within the culture of the hospital and the cultures of medicine, nursing, and illness. Adding the patients’ culture into this mix is complex and is the role of transcultural nursing, or ethnonursing (Leininger, 1978). Ethnography has been used extensively in health care, both to describe care in context and as a method for evaluation of care at the patient-satisfaction and institutional levels. Important ethnographies are Goffman’s Asylums (1961); Zboroski’s People in Pain (1969); Germain’s The Cancer Unit (1979); Rhodes’ Emptying Beds: The Work of an Emergency Psychiatric Unit (1991); and Lock’s Twice Dead: Organ Transplants and the Reinvention of Death (2002). Inherently a mixed-method design, ethnography consists of interviews (of any type), observations (also of any type), field notes, and the diary of the investigator to aid in synthesizing and theorizing from these data. Additional data may be of any type—hospital records (present or historical), newspaper reports, maps, anything else that is necessary. The focus, however, is critical, and must be on the group, the institution, the community, or the individual as a member of a particular group. Ethnographic methods have been used extensively for evaluating care settings, and are particularly useful because they encompass both

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the context and the patients’ experiences, such as satisfaction with care. Ethnographic methods reveal both the construction of the setting and the outcomes, thereby enabling the inclusion of recommendations for “fixes” in the report. Recently, Beatty (2010) made an important comment on ethnography: it does not “do” emotion well. Yet, if we were to characterize qualitative health research, we would list emotions—and the complexities of emotional distress—as the main characteristics of qualitative health research. It is possible that grounded theory was developed to incorporate emotion, as it extended from nursing and nursing research problems in the late 1960s. Ethnography comes in many forms, all with certain features in common, such as the theoretical grounding of the assumptions of culture. Because culture is shared between members of the group, any member of the group may be seen as a participant (this doesn’t mean they are equal—some members have better “qualities of a good informant” than others). But in health research, the groups that you are interested in may not be cohesive. By this I mean that they may not have contact with one another. For instance, people with diabetes live with their families and may not have contact with other diabetics. However, they have behaviors in common because of their diabetes, and they are treated by their physicians and by society as diabetics, so they acquire beliefs and values common to diabetics. For this reason ethnography can be used with such “groups”; we have described it elsewhere as focused ethnography. Thus, one particular ethnographic method has been developed for use with the ill. .

Grounded Theory Grounded theory uses many of the strategies of ethnography—interviews, observations, and field notes (called memos)—but because it focuses on process and change, grounded theorists think about their data differently. In looking at change, they focus on trajectories, stages, and phases; a basic social process (Strauss 1987) or core variable (Glaser 1978) creates a theme that runs through the data and holds the theory together. It is the perspective of grounded theory, with its focus on change and its management of transitions, that makes it particularly suited for studying health and illness. The use of observational and interview data make it suited for use in clinical areas with the ill, whose conditions may change rapidly. Grounded theory does incorporate emotions well and allows for multiple perspectives, but, as with ethnography, it leaves the researcher “outside” as a nonparticipant.

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Phenomenological Research Phenomenology is the most inductive of all qualitative methods. The goal is to zero in on the essence or the meaning of the phenomenon and to reflect on it interpretively, using phenomenological concepts. While the goal is not to produce theory, the rich description makes it particularly useful for concept identification. For example, in describing comfort from the perspective of the patient, we observed that, while nurses were describing serious injuries, they postured as if they too were experiencing the pain of their patients’ injuries (Morse, Bottorff, & Hutchinson, 1995). The concept of empathy did not fit with their expressions and descriptions, and after much analytic thought we developed a new concept for the sharing of the pain called compathy, which is the physical equivalent to empathy (Morse & Mitcham, 1997; Morse, Mitcham & van der Steen, 1998). There are many styles of phenomenology, differing in the philosophy that provides the basis for phenomenological reflection. Phenomenology also differs in the mode of collecting data. For instance, interpretative phenomenological analysis uses semi-structured interviews (Smith, Flowers & Larkin, 2009), whereas van Manen (1990) uses “phenomenological conversations.” Phenomenologists differ in how they handle data, with some reflecting on the phenomenological Heideggerian concepts of lived body, lived time, lived space, and lived meaning (Benner, 1994; Dahlberg, Dahlberg & Nystrom, 2008; van Manen, 1990), and others using a heuristic process of engagement, illumination, and synthesis (Moustakas, 1994) or Husserl’s eidetic reduction of the structure of the essences (Giorgi, 2009, 89-93). Observational Research As noted earlier in this chapter, our patients are not always verbal, conscious, or able to make their needs known. Perhaps they are infants, unable to be interviewed, or perhaps they are aphasic or have a tracheostomy. These are the most vulnerable ones, and the ones to whom we owe greatest responsibility. They are also the most difficult to include in our research, as they cannot express themselves in a verbal interview and any insight into their emotions or experiences must be inferred from their behavior. Our observations may be “macro,” observing gross motor movements or body posture, or “micro,” looking for signs of distress or indicators of problems, needs, or discomforts. We may observe their interactions with others, with caregivers or family members. What we discern is reflected from our own experiences and what we know about ourselves or others.

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Participant observation is observing the person in a particular context. In hospital settings the observer is usually not a participant in the work setting, for it is seldom possible to work and be an observer at the same time. As mentioned earlier, emergencies and patient crises may demand that that observer participate, and the researcher should do so if it is clear that his or her assistance is needed for patient safety. Videotapes have revolutionized research in patient care and, provided that consents have been obtained, videos enable the microanalysis of the rapid interactions in caregiving. The frames may be slowed or stopped to see details of touching, for instance. They also allow for the analysis and descriptions of subtle changes, such as facial expression. Observational research has one major limitation: it does not enable the patient’s understanding of the meaning of events to be included. For instance, researchers may be able to discern from facial expressions that the person is “grappling” and trying to “make sense of what has happened in the accident.” Collecting descriptions from the person at a later time will actually provide that information. Researchers can often guess from facial expressions or other responses, but if this information is critical to the study, it must be confirmed by the participant later. The advantage of videos in collecting data that may otherwise be missed may also cause a difficulty in analysis. The rapid changes that the researcher is observing may occur too quickly and be beyond the participant’s awareness. The validity of the research will not be challenged—the researcher has the videos—but the interpretation of the movements may be challenged. Focus Groups Focus group research has become very popular in qualitative health research, particularly in medicine. Focus groups appear to be a quick and relatively easy way to collect data. There are numerous texts and manuals providing instructions for conducting focus groups (or firms that may be contracted for this purpose), and there are many research reports that have used only focus groups as the main strategy for data collection. For the hassled and overburdened researcher, focus groups may appear to be the best choice and a fast route to publication. However, some researchers appear to forget that focus group interviews only provide data at a certain level and of a particular type. Focus group data are opinions given in response to questions asked in a group. These opinions have been offered publically, and may not be the participants’ actual opinions. The opinions will have been offered in response to set questions that may not ask about an important feature

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determining the participants’ opinions. And there may have been some coercion in the group, with shy members feeling it is safer to agree with dominant members, rather than to disagree. In other words, the data may not be as “in-depth” as one wishes when using focus groups as the sole data source. One recent and serious problem with focus groups is that they are being used as a “lazy man’s survey,” that is, at times when the focus group questions are better suited to a survey, using a larger sample and eliciting all the individual views, equally weighted. Focus groups give you views from a group as a whole, but the views of all members of the group are not necessarily recorded in these data. Recognizing that their study is rather like a survey, sometimes investigators hold one focus group in each state, scattering them around the country. Or they collect data for one female group and one male group, or for one Hispanic group and one Caucasian group. However, they would rarely have adequate data from each particular group to make valid comparisons between the groups. What, then, is an appropriate use of a focus group? Focus groups are best used in the preliminary stages of the study to assist with scoping the domain, to identify the groups of interest in the topic, and to develop a sampling scheme. When they are used to plan surveys and questionnaires, it is important that adequate focus groups be conducted in a manner that ensures that the data are comprehensive. Inadequate data at this stage may invalidate the study. Semi-Structured Interviews There are several types of qualitative interviews. The main ones are unstructured interviews (in which the researcher asks one main question: “Tell me . . . ”), guided interviews (in which the researcher asks six to ten questions that form the structure of the interview), and semi-structured interviews (in which the entire domain of the interview is outlined with open-ended questions). Semi-structured interviews are used when the researcher knows what questions he or she wants to ask, but does not know what answers to expect. In semi-structured interviews, question stems are asked in the same order in each interview, and responses to these open-ended questions may be probed, so that the interviewee has the freedom to respond as he or she wishes. The important point is that unstructured interviews or guided interviews are methodological strategies to be used within qualitative methods—methods that are theoretically based and have a particular perspective that guides the data collection, analysis, and interpretation.

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Open-ended, semi-structured interviews also should not be used alone as a method. The only exception is semi-structured interviews conducted in the following exceptional circumstances: the sample is adequate; the population is delimited; or other methods are unsuitable to elicit the information or for the population or the context. For instance, along with Doan, I used written semi-structured interviews when seeking adolescent responses to menarche (Morse & Doan, 1987). I knew that I could not interview the girls singly or in small groups and obtain meaningful information about menarche. However, asking them to write their responses to semi-structured questions did elicit the needed information. Qualitatively-Driven Mixed Methods Qualitatively-driven mixed methods have recently gained importance in qualitative health research. When the study is qualitatively-driven, the core qualitative component ensures that the perspective is focused on the person and that data are intimate and valid. The secondary quantitative component enables measurement of physiological or social indicators, thus providing insight or additional data that the core qualitative project cannot access alone (Morse & Niehaus, 2009). These QUAL-quan mixed-method studies are perceived to be more “solid” than using a qualitative method alone, and the recently increased acceptance of qualitative inquiry may come from being attached to—or attaching itself to—quantitative methods. When both the core component and the supplementary component are qualitative (Morse & Neihaus, 2012), the supplementary component adds a new qualitative dimension to the core qualitative component, making the study more comprehensive than it would be if using one qualitative method alone. For instance, the core component may be grounded theory, with phenomenological interviews adding to the richness and depth of understanding at some particular point in the grounded theory process.

What are the Risks When Conducting Qualitative Health Research? All qualitative research must be reviewed and approved by the IRB, and often also by the institution or the community where the research is to be conducted, to prevent harm to participants. But in qualitative health research, where the methods are not experimental, studies do not usually involve treatments or variations in care protocols. So what is the possible harm?

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IRBs usually are concerned that researchers may cause harm because of the intimate nature of the research interview, that is, they may cause the participant distress, and so IRBs usually require that a referral for counseling be established. A second concern of IRBs is that the access of the researcher to personal information and records could result in the privacy violation. We responded with principles for the evaluations of proposals for use by IRBs (Morse, Niehaus, Varnhagen, et al., 2008). Extending this work, here I have expanded these principles for researchers to use during the conduct of research.

Principles for the Ethical Conduct of Qualitative Health Research 1. Risk may occur throughout the research process, is emergent, and ongoing; so too risk assessment must be reflexive and ongoing. The course of a qualitative project cannot be anticipated. Despite advice to students to conduct an “armchair walkthrough” to anticipate possible problems or difficulties, one cannot pre-determine what a participant’s response will be during an interview, or while being observed when the action takes an unexpected turn. Students ask me what to do if participants cry, and I reply that one should do kind and human things: Pass them a tissue; ask if they want the recorder turned off; or ask if they would like a break or a drink or to take a short walk. I remind them that they do not have to continue, and that we can stop the interview. Yet, despite offering all of these things, participants invariably want to continue. 2. The qualitative researcher must be prepared for the research procedures, be familiar with existing knowledge of the topic, and anticipate its “emotional terrain.” The onus is on the researcher to learn all about the context and the topic before commencing the study. You must dress appropriately to fit in; know about the norms of the group; and know how to ask, thank, and otherwise fit in without causing offense or other problems for the participants. Many topics are distressful, but it is generally “normal” distress, and you must be prepared to cope or to console. In all of my hundreds of interviews, I have never received a suicide threat or a report of an abusive relationship, but qualitative researchers must know what to do should a threat be uttered or a report of abuse occur. The golden rule is that if a person is extraordinarily upset, stay with the person and use

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your mobile phone to call for assistance. As already indicated, IRBs usually require that a counselor be available for referral if needed. 3. Risk assessment, avoidance, and alleviation are the ongoing responsibility of the researcher. Know what you are walking into. The researcher’s risk is not only during an interview. Ethnography, in particular, may be very risky. Madison (2009) wrote about a student who conducted fieldwork with a Chicago street gang and of another who entered a closed coal mine in Ghana, descending several thousand feet. “Don’t take my picture!” Does the researcher take photos without consent, or otherwise miss the “data moment” to get consent? This may cause internal conflict (“Do I/don’t I click?”), as noted by Stewart, et al. (2009). Depending on the situation, it is probably best to get a priori permission to take the pictures, with consents for publication of the photos obtained later. In this way, the participants can see the picture(s) and know what they are consenting to, when they sign the release for use of the photos, including a release for publication. There are also risks in reporting. First, communities, that is, members of the communities, may not like what is written about them, how they are described, and how they will appear to others. Changing the name is not adequate to protect anonymity. The work of Ellis (1986) with the Guineamen, the Fisherfolk from the Virginia tidewater region, Chesapeake Bay, conducted without their full consent, is a lesson to all qualitative researchers (Allen, 1997). As Tolich (2004) pointed out, the publication of a later article describing her return to the community to apologize (Ellis, 1995), doubly dammed the community. Tact is always important. If some features in the context or about the participants are tangential to your argument, do not include them in your report. Finally, even with autoethnography, when the researcher is writing about one’s self and one’s own experiences, the story is never entirely about one’s self. QHR published an excellent article comparing the author’s experience of spousal abuse with parallel descriptions in the research literature (Carter 2002). Such descriptions cannot be entirely about the self: this article also mentioned the husband and others who had not consented to the research. What to do? The editors of QHR removed all identifiers including those to place, and published the article using a nom de plume (Morse 2002). In this way, the editors were not interfering with the advancement of knowledge, but we were aware that the author lost a publication listing on her vita and credit toward the “count” of articles for academic tenure.

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4. Researchers must be cognizant of their own vulnerability and that of the research team. In the midst of our involvement with participants’ stories and plight, we forget that these stories are affecting us, both ourselves as researchers, and our research team. This includes all those who come in contact with the data, including the transcriptionist (Warr, 2004). The empathy that the researcher feels for the participant’s plight is an important part of the subjective experience in qualitative inquiry—we are never a fly on the wall—but it is always a fine line between feeling for and feeling with one’s participants and becoming overinvolved. It is the responsibility of the project leader to monitor the research team and to provide debriefing experiences following difficult and distressing interviews. 5. In the protection of anonymity and confidentiality, the qualitative researcher’s responsibility is first to the participant and the setting, and second, to the research goals. This is an important principle both in fieldwork and for information gained in interviews. First, in fieldwork, the researcher may observe or learn information that jeopardizes participant care or safety, and therefore must be reported. However, by reporting such information, the researcher risks losing the trust of the participants in the setting, and therefore of losing a research site. Regardless of the cost to the research project, the researcher’s first responsibility is to the participants, and this requires a great deal of tact and trust (see Kayser-Jones 2002). Second, be aware of any information that is learned in interviews and legally must be reported. For instance, a notice that the researcher is obligated to report child/parental abuse should be included in the consent form. 6. The risk to participants includes the risk of publication of the results of the research. The final risk to participants is in what “happens” to the information that they have given during the research. The greatest risk is in the loss of anonymity in the researcher’s write-up. Unfortunately, changing all names in the published report is not usually adequate protection to ensure confidentiality. Often all demographic tags—age, gender, marital status, level of education or income, illness—are published in a table, line by line, linking all of these identifiers with the pseudonym. This enables anyone who knows a particular person in a study to identify that person. Worse, in many studies, all quotations are identified by codes or pseudonyms,

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so that everything reported in the study can then be traced back to the particular participant. For this reason, in QHR, all reports of the sample must be grouped, and quotations cannot be tagged. In summary, the methodological challenge of conducting qualitative health research comes directly from the participant characteristics associated with illness and, perhaps, dying; the characteristics of caregivers and the nature of their work; and the institution itself. When conducting research in an institution (hospital, rehabilitation center, or nursing home), those researchers who are unfamiliar with the formal and informal rules of privacy, priority of care, and so forth must undergo a period of orientation before beginning data collection. They must become accustomed to interviewing or observing the seriously ill and learn how to compensate for symptoms that interfere with data collection. I have described the methods most often used in qualitative health research, and have discussed some of the modifications to the methods that may be necessary because of the context. In the next chapter we will explore the delicate aspect of qualitative evidence, and how we must consider challenging the Cochrane Criteria as a standard of evidence.

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Chapter 5

Compelling Evidence: Expanding the Criteria of Evidence1

One of the major stumbling blocks for the acceptance of qualitative inquiry into mainstream research in the 1980s and 1990s was the mainstream’s uncritical adoption of, and emphasis on, the Cochrane Criteria for the establishment of evidence-based medicine. Some of this continues to the present day, most notably in the area of qualitative “evidence.” In this chapter, I explore the fit among the standards used for evaluating evidence in health care, the Cochrane Criteria (Cochrane, 1972/1989), and qualitative health research, and I explore ideas for developing alternate models of evidence in qualitative inquiry. As well, I suggest incorporating additional types of qualitative evidence as applied in other disciplines using qualitative research and developing distinct “rules of evidence” for qualitative health research.

The Misuses of the Cochrane Criteria The Cochrane Criteria have been used politically to impede qualitative health research and to constrict qualitative inquiry. This oppressive movement—which I call the “politics of evidence”—is determining how; when; and to, with, and by whom qualitative inquiry is taught, contracted, funded, conducted, published, read, and implemented. The long debates over the qualitative/quantitative paradigm issues have now gone beyond preferences for a style of approaching and conducting research; they have become a more serious concern—one that threatens to exclude qualitative inquiry by denouncing it as invalid and of no use. 95 Qualitative Health Research Research: Creating a Discipline by Janice M. Morse, 95-114. ©2012 Left Coast Press, Inc. All rights reserved.

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This “political economy of evidence . . . is not a question of evidence or no evidence, but who controls the definition of evidence and which kind is acceptable to whom.” (Larner, 2004, p. 20; italics in original) Background of the Cochrane Criteria A model to evaluate research rigor was introduced in 1972 by Archie Cochrane (1972/1989). In his publication Effectiveness and Efficiency he recommended standards for medical research. His model placed randomized control trials as the gold standard for determining evidence, and placed “mere opinion” at the lowest level. Cochrane’s model, intended as criteria for the evaluation of drug trials to determine treatment efficacy, has been embraced in medicine as a new standard, and qualitative inquiry is placed at the lowest level, considered as “opinion.” Later, from Cochrane’s initial taxonomy, standards for the quality of evidence were classified by Sackett (1993) as follows: Grade A: Randomized trials with low false positive (alpha) and/or low false negative (beta) errors, supported by at least one (preferably more) Level I randomized trial; Grade B: Supported by at least one (preferably more) small randomized trial with high false positive (alpha) and/or high false negative (beta) errors. Level IIs are usually inadequate for implementation, but metaanalytic techniques used to analyze the results of two or more trials may obtain statistically significant results to move these into Level I; Grade C: These consist of Level III (nonrandomized, two-group concurrent-cohort comparison, historical control or another site as comparison); Level IV, with no comparison group; and Level V, opinions of expert committees. Grade C is not recommended to inform practice. Qualitative Inquiry is Classified as Grade C Evidence and evidence-based practice have become the mantras for medical care; they have spawned meta-analyses and the Cochrane Library—a depository of these reviews assessing evidence by evaluating series of trials, or replications. This new agenda for evidence-based practice has resulted in conferences, societies, journals, and databases and in new approaches to care. Modifications of therapy are made based on the results and recommendations of meta-analyses from multiple trials.

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Despite its two main criticisms, which are (a) that the trial conditions are not replicable in day-to-day clinical care, and (b) that the mean score of the trial does little to inform the individual case (Kravitz, Duan, & Braslow, 2004), evidence-based practice is a trend that is here to stay. Where Does This Leave Qualitative Health Research? Obviously, qualitative inquiry makes a poor fit with the Cochrane Criteria, for it has never purported to be a method that can be used to evaluate the efficacy of drugs or other treatments. Rather than excluding qualitative inquiry from the Cochrane Criteria, because of the nature of qualitative data, the different purpose of qualitative inquiry (nonexperimental), and the different methods and designs of qualitative inquiry (textual, interviews, conversation, observations), those making this judgment immediately classified qualitative research as mere opinion—Grade C, or the lowest level of evidence—and hence not recommended for implementation. Elsewhere I suggested that Cochrane, in his categorization, was intending to target clinical opinion or clinical judgment regarding treatments, and not qualitative inquiry and the type of problems that it addresses. In fact, Cochrane probably did not know anything about qualitative inquiry as it is practiced today (Morse, 2006a). Even today, Cochrane might wish to suggest that it is an error, or invalid, to use the Cochrane Criteria for qualitative inquiry. Thus, perceived as clinically useless for Cochrane’s agenda of treatment efficacy, qualitative inquiry was excluded from medical research. A major concern is that other health care disciplines that have a mandate for health and understanding the illness experience and are users of qualitative inquiry have been virtually excluded from the resources provided for medical research. Research from disciplines such as nursing, rehabilitation, occupational therapy, counseling, social work, and the humanistic specialties within medicine, such as family practice and counseling psychology, became less credible. Researchers had no access to funding and were sometimes prevented from disseminating their results. Specialties that were not primarily concerned with drug therapy or that extended beyond this discipline—specialties that valued the art of care as well as the science of care, that were primarily concerned with caregiver–patient relationships and interactions, and that were concerned with the context of care—all slipped from the priority list of medical funding agencies. This effectively denied them resources for research. The immediate political response of many granting agencies that funded medical and health research was to adopt the Cochrane Criteria

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as the standard for evaluating all research proposals and, hence, for the allocation of research funding. For foundations and granting agencies that applied the Cochrane Criteria carte blanche, this meant that qualitative research was not rigorous enough to be considered fundable. Major criticisms were that qualitative research did not use randomization; utilized sample sizes that were too small; involved no hypotheses or hypothesis testing; and demonstrated a general disregard for reliability, validity, proof, generalization, and replication. In the United States, nurses had their own funding source in the NCNR (the National Center for Nursing Research, now the National Institute for Nursing Research) and the National Institute on Drug Abuse, which is part of the National Institutes of Health (NIH), and they were less affected by this trend. But in Canada, Australia, and New Zealand (and probably the United Kingdom), where the control of health care funding was in the hands of medical researchers, this trend was crippling. Federal organizations and private foundations that funded research were excellent mirrors of the state of the science. Their health care priorities, and consequently the grants that they funded, revealed what research was perceived to be necessary and of outstanding design. Yet, requests submitted to both NIH and the Canadian Institutes of Health Research for data on the percentage of qualitative grants received and funded brought the response that they did not keep such statistics.2 Still, in the United States, since the 1980s, there has been consistent lobbying by groups of nurses to increase both the number of qualitative members on the review committees, or to establish special committees with the expertise to review qualitative applications. The agencies’ responses that “other methods do not have special review groups” are not exactly correct. Presently, the members of the review groups are predominantly quantitative researchers by default. For instance, the review groups in nutrition understand and respect the methods used by nutritionists, and those in engineering, are versed in the methods the methods used by engineers. There are two problems with the committee structure in NIH for preventing qualitative researchers to get funding. First is the preference that most committee members should have NIH funding, although this is not a requirement. Such practices perpetuate the status quo, and this makes it difficult for enough qualitative researchers to establish the track records necessary to “break in.” In all fairness, if the committee does not have the qualitative expertise needed within the committee membership, another reviewer may be brought in, either in person or by phone. But the disadvantage of this system is clear. How can one unknown outsider sway a committee (in which friendships and power relations are already

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established), particularly if participating by phone, without the advantages of a personal presence and eye contact? It is even worse in Canada (from my experience as a reviewer in New Zealand, Australia, Great Britain, and South Africa), where the external reviewer’s written report alone is considered by the committee, and the “expert” does not have the privilege of listening to and participating in the committee’s discussion and debate, nor in the voting. These problems continue to this day. The first response of qualitative researchers to this inequity in funding in the 1980s and 1990s was immediate appeal, but their voices were soft. Their criticisms were often published in sources that were not on the reading lists of the policy makers. Furthermore, because research is essentially squeezed into most medical curricula, and qualitative inquiry is not usually included at all in the syllabi of medical schools, these appeals came from nursing, occupational therapy, social work, speech therapy, and counseling—disciplines that were tangential to the mission of medical foundations, that were focused on the person rather than the therapy, and that were not funded as mainstream priorities by the medical review boards. The objections came from stakeholders who were perceived to be outside the core mission of the review boards, and so the complaints were of little concern to the councils approving the funding decisions. And the appeals came unsupported by quantitative health researchers (mainly experimental psychologists and epidemiologists), who were better established and better funded and who probably agreed with the medical scientists and decision makers. The second response of qualitative researchers to the funding inequity was to become part of the Cochrane movement (“If you can’t beat ‘em, join ‘em.”). A large group of qualitative researchers formed The Cochrane Qualitative Research Methods Group, which met regularly with the agenda of including “contextual evidence” in the reviews. Their initial task was methodological, that is, to determine how one should incorporate qualitative findings into quantitative reviews. Previously, I wrote: I am now suggesting that this is the time to be honest with ourselves. The assumptions underlying evidenced-based medicine are a poor fit with the assumptions of qualitative inquiry. Further, we have contrary research agendas: While the epidemiological and experimental designs for clinical drug trials seek to decontextualize, qualitative research asks them to consider the context. We have different definitions and agendas for “providing care.” While their focus is on the pill and if it works, our focus is different: why the patient decides whether to not to swallow the pill, to accept, reject or modify the prescribed

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treatment, or how it impacts on patients’ lives. Both perspectives are equally important for effectiveness, but they are complementary, rather than information to be incorporated into the same reviews. (Morse, 2005, p. 3) Despite these words, I now believe that The Cochrane Qualitative Research Methods Group has made headway in raising the consciousness and status of qualitative inquiry. It is making a difference in the way qualitative inquiry is perceived. Some medical journals, such as the British Medical Journal, now routinely publish a qualitative section, perhaps due in part to the efforts of this group, but this is a “side effect” of their work. The final response of qualitative researchers was methodological: developing methods for integrating qualitative findings into quantitative reviews and for qualitative meta-analysis. This task itself was onerous because, of course, textual data are not additive and qualitative studies do not intentionally replicate. Following meta-ethnography (Noblit & Hare, 1988), the effort was spearheaded by Sandelowski and her colleagues (Sandelowski & Barroso, 2007). The primary approach followed quantitative meta-analyses: select pertinent studies, critique these studies according to identified standards (Sandelowski & Barroso, 2003), and then find a technique to develop a model according to the major theoretical commonalities (Thorne et al., 2004). I am not hopeful, in 2012, that this emphasis on evidence is going to change. The politics of evidence is strong, although we are making some progress with the increased use of quantitatively driven mixed-method design, that is, quantitative research with a minor qualitative component of interviews or focus groups. I believe the problem that we face is not with qualitative inquiry itself, but with mainstream medicine’s entrapment in clinical drug trials, experimental design, and quantitative analysis—in other words, the perception of medicine as biological and physiological, rather than humanistic. I maintain that, despite the recent rise of humanistic medicine, the unwavering adherence to randomized drug trials and epidemiological designs in health care, the insistence on the criteria outlined by Cochrane as “the standard,” and the continuing fuel by the pharmaceutical industry occur at the expense of more significant advances—advances that might make even greater contributions in reducing morbidity and mortality. I therefore believe that medical granting agencies’ limited support for qualitative inquiry and their limitations in acknowledging, respecting, and funding qualitative modes of inquiry and accepting alternate evidences will impede advances in health care (Morse, 2005).

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The following two factors are driving the health care/medical agenda, and cannot be ignored: 1. The public lobby for cure is stronger and louder than the public lobby for care. Medical research is expected to reduce morbidity and mortality; in other words, to save lives. 2. This demand for cure is accompanied by the political and public lobby to reduce health care costs, that is, to improve efficiency in care. Medical care is becoming too expensive. These factors are interrelated. The question that qualitative researchers have not asked themselves is, “Does qualitative research save lives?” Question #1: Does Qualitative Research Save Lives? In most articles published in the journal Qualitative Health Research, the authors claim that their research creates models for practice that provide insight and understanding into the experience of patients, families, and caregivers. It is important to understand patients’ experiences, but in the hardball of everyday life our “soft research,” with its nebulous outcomes, is not useful to policy planners and to those responsible for the health of the nation. From this perspective, our research is not directly relevant to our health care goals, which are reducing mortality, lowering morbidity, and reducing costs. Nevertheless, as I mentioned earlier, medical knowledge is dependent on qualitative inquiry. The compendium of signs and symptoms, albeit developed somewhat haphazardly in the 18th and 19th centuries, resulted from individual physicians’ observations and descriptions. This approach continues, particularly in the identification of new diseases, for instance, in the identification of acquired immune deficiency syndrome (AIDS) during the early 1980s. New medical procedures are documented using case study design, for instance, in the evolution of heart transplant surgery. Qualitative research is also being used to identify symptoms, for instance, early signs of heart attacks in women (Brink, Karlson, & Hallberg, 2002). Pointing out such obvious inconsistencies is not enough. This basic research (and I use that term deliberately) is not adequate for our critics: they need numbers. Question #2: Can Qualitative Health Research Meet the Cochrane Criteria? Theoretically, qualitative research could meet the Cochrane criteria by supplementing our designs. We could use a mixed-method or multiplemethod design and calculate any impact on mortality resulting from our

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research. Indeed, this may be the impetus behind much mixed and multiple methods research. What Cochrane demands According to Cochrane, research that scores well in a Cochrane review must have certain design characteristics, namely: • a population that is delineated; • a clear problem, usually stated as a testable hypothesis; • textbook experimental design; • cookie-cutter (that is, standardized) interventions; • impeccable methods; and • measurable outcomes. These characteristics make the research standardized and replicable and thus ideal for studying disease, doses, treatment efficacy, lab values, and so forth. However, these features, which are essential for performing clinical drug trials, are not usually necessary characteristics of qualitative health research. We work with behavioral problems, social problems, and illness problems, not with the efficacy of drugs. Instead of populations, our care is usually with individuals; our research problems are rarely consistent; our interventions are not standardized; and our outcomes, whether behavioral changes or whatever, are difficult to measure and sometimes even to describe clearly. Our outcomes may be transient and/ or subjective, and almost always are difficult to quantify. Providing patient care is a subjective art, and the standardization required to determine evidence using the Cochrane Criteria clashes with our caregiving values for individualized care. Even if we could arrange for the equivalent of clinical trials, these studies would require huge samples, and they would be extraordinarily expensive, clumsy, and slow. Our research, when it deals with interventions, uses designs that are not relevant to Cochrane standards. Excellent clinicians do not use behavioral interventions that consist of rigid protocols, but rather, use a blend of science and clinical wisdom. Interventions based on modifying behaviors and working through relationships lack the scientific rigor required by evidence-based protocols. Our problems include: • the impracticality of using double-blind treatment and control groups with replication in at least two independent sites with behavioral interventions (for instance, consider family therapy); • the reduction of such interventions to rote and precise rules, which counters the necessary flexibility in approaches, when underlying

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philosophies and treatment realities require unique dialogues in caring for individuals; and • the extraordinarily large contextual variation within the presentation of illnesses and needs, and in the contexts, cultures, and expectations of patients. Clearly, another form of evidence must be developed to justify qualitative inquiry as legitimate, appropriate, and desirable.

An Evidence Base for Qualitative Health Research The value of evidence, whether for qualitative or quantitative research, is based on two aspects: the rigor of the inquiry and the nature of evidence itself (that is, what is accepted as evidence; Larner, 2004). Alternative models of evidence that are better suited to qualitative health research phenomena than that which Cochrane offers for medicine must be identified. Rigorous Qualitative Inquiry as Evidence For three decades we have been trying to develop, first, standards, and then, criteria for valid, rigorous qualitative inquiry. The synopsis I present here is a relatively new perspective, but it will communicate the main points. Building rigor internally is the responsibility of the researcher In qualitative research, rigor is not something that is necessarily planned before the project starts, as, for example, in predetermining sample size, or “decreed” at the end of the study. Rather, it is the careful adherence to the principles of qualitative inquiry during the conduct of the project. Qualitative research has many principles concerned with purposeful sampling, ensuring saturation, and so forth (see Morse, Swanson, & Kuzel, 2001) that need to be followed to ensure the integrity of the project. Basically, the researcher has the responsibility to move forward carefully and inductively, verifying and reverifying every insight. Qualitative inquiry is slow and takes much time, backtracking, cogitating, and conceptualizing. At all times, the researcher must be reflexive and analytical, and must document his or her decisions in an audit trail. Qualitative methods are described in many texts, but one thing these texts do not tell you is that qualitative research is a “way of thinking.” New researchers should seek a mentor as a sounding board and someone to who can help them “hear themselves think.” The research should not

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be finished until the mentor is satisfied that all of the loose ends have been neatly integrated and the theory is tight. The greatest threat to validity is weak research, which occurs when the sample is small, the data are thin, and/or the analysis is obvious and simplistic. Further, to ensure that the project has integrity is through generalizability. In qualitative inquiry, we attain generalizability by increasing the level of abstraction such that there is evidence of interesting and exciting concepts and that innovative and pragmatic theory is developed. This theory, in itself, makes the project generalizable, as the theory may then be recontextualized and applied to other settings. However, an even greater and more important generalization is to show how the concepts and theory link with other concepts and theory, adding to present knowledge and expanding the scope of the work. If the theory “works,” then it is probably right. Demonstrating rigor is the responsibility of the reviewer/implementer The external reviewer’s evaluation of the work itself, or his or her critique, has the ultimate responsibility for determining the quality of the research. There are two classes of qualitative research, each with its own criteria for determining rigor: descriptive and interpretive (Morse, Swanson, & Kuzel, 2001). Descriptive qualitative inquiry. Descriptive qualitative inquiry, as its name suggests, is simply reporting what is. Because it is straightforward reporting, it often tells us what we all know. Therefore, qualitative researchers make descriptive work more interesting by reporting on topics at different levels of analysis, such as microanalysis, or by choosing something uncommon and unfamiliar, which then reveals things not known about the everyday, often things with great intrigue, such as negotiating sexual consent in same-sex relationships (Beres, Herold, & Maitland, 2004). The important features of determining the rigor of descriptive qualitative inquiry are as follows: 1. Unless the phenomenon is very transient, we still have the external referent with which to compare the description. (The external referent is the actual incident, feature, or whatever being described. The validity is determined by comparison: “Does this description represent that?”, where “that” is the actual phenomenon.) The researcher can also “prove” accuracy by having two or more raters and establishing inter-rater reliability. 2. Because the phenomena are concrete and are often stable, or reproducible, researchers usually can return to the field and check their data/description.

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Interpretative qualitative inquiry. Research that is interpretative is a little more difficult to validate, and often the results are the careful insights of the researcher alone; even the participants may not be aware of the researcher’s conclusions. Because of the role of insight, the researcher cannot, and should not, use a colleague to conduct inter-rater reliability checks. For example, if I read a piece of text and code it thus and so on the basis of my knowledge of the previous interviews and this interview, the code is more symbolic than the rather obvious “face value” categorizations that my assistant would use to code it. In other words, it would not be coded on the information contained in that piece of text alone. Therefore: If you are working interpretively, inter-rater reliability will not assist you—rather it will keep your analysis superficial and trite, “perfectly healthy but dead.” (Morse, 1997a) Researchers who are using interpretive inquiry must (a) ensure that their study is rigorous; and (b) write logically, richly, and step by step to present a cogent argument for the reader. Of course, they may use external referents and the published work of others to support their observations but, all in all, they are on their own. Generalizability and validity checks are conducted in the discussion of the report. The researcher must logically link with, extend, or contradict the work of others. The greater the level of conceptual and theoretical development, the greater the scope of the generalizability and the greater the impact of the research. Methods are rarely all interpretative or all descriptive. Ethnography, for example, is mostly descriptive. Kinship charts, maps, descriptions of rituals, and so forth may all be checked to ensure they are correct. But ethnography also includes cultural beliefs and values, and these are interpretive and cannot be checked against a concrete external referent. This means that appropriate evaluation of the ethnography depends on the researcher’s question and the mix of descriptive and interpretative strategies used. Similarly, consider phenomenology, which is an interpretative method. Phenomenologists like to use the “phenomenological nod” as a major mechanism for determining validity, that is, the indication or recognition of the description by others. However, there may be a descriptive piece in the phenomenology that could be externally verified, so parts of a project may be verified using different methods.

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Explore and Adapt Alternative Models of Evidence What are the “alternative evidences” for demonstrating efficacy? I am thinking of problems that are too chaotic to be explored using experimental design, for instance, qualitative problems. Qualitative findings may be extended using logic and common sense. To do this, we must redefine or conceptualize “evidence” and create formal designs of evidence that are compatible with qualitative inquiry. Some of these designs may be found in other disciplines, such as engineering, anthropology, and biology. And some of the ones worth considering are embedded into other disciplines, that is, they are the accepted norm for doing research, yet they may not even be titled. Forensic Designs Forensic inquiry is conducted “detective style” on a single case or incidence, often following a serious incident or major disaster that may include the loss of life. The goal of forensic methods is to identify causation—and hence prevent recurrence—rather than, as in police work, to convict or, as in journalism, to expose. Forensic designs are used by many disciplines (obviously by police at crime scenes but also in cases of sexual assault, domestic violence, missing persons, and fraud investigations and in audit procedures). There are also fields of forensic engineering, anthropology, and archeology. Of course, when a building has collapsed or a mummy has been discovered, qualitative methods are the only sensible way to proceed, and these techniques are accepted as standard practice. At the Qualitative Health Research conference in 2004, Linda Connell, a scientist with the National Aeronautics and Space Administration (NASA), described the Aviation Safety Reporting System (ASRS), which collects reports on aviation safety events and incidents, and the role of qualitative inquiry in identifying cause. She said, “Black box cockpit recordings are qualitative data.” From the examination of black box recordings, there are invariably changes in policy and procedure, changes in aircraft design, or further investigation into human limitations that may have contributed to the incident. This record is a qualitative data set and design that indisputably saves lives. According to Connell (2004), the methods used by NASA to “diagnose” aviation errors are now being used in hospitals in the United States to investigate medical errors (see Barach & Small, 2000). This is perhaps the most basic of applied research, for it is from examination of such single cases that pattern recognition and principles emerge. Because the researchers

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are not waiting until there is loss of life (they are responding to a hypothetical case, which is the converse of statistical significance), it is hard to claim credit, or to demonstrate a drop in mortality. Adhering to a theory of causality that states that a near miss may become an actuality on the second occurrence, these researchers refute controlled experimental designs, rather using common sense and logic; rather than proof, they seek detailed information. They promise those that come forward to provide such data “no reprisal”, which means there is no “audit trail” or details to demonstrate the validity of their assertions. But conditions of anonymity means that the necessary, accurate and comprehensive data are valid. They meet conditions of evidence. But the hypothetical outcomes are devoid of the quantitative criteria of replication. Instead, this is ethical research—saving lives without human subject testing. The new focus on patient safety will make this one of the most rapidly expanding areas of qualitative inquiry, and we should officially embrace these techniques into our repertoire. I have identified four types of qualitative evidence. 1. Deliberate trial or testing of interventions with N = 1 research The main principle underlying “N of 1” research is to minimize risk; for example, a single case was used to “test” the first heart transplant (this may or may not be happening today with human cloning). The design is usually an experimental intervention, the outcomes are unknown or uncertain, and the nature of the trial demands qualitative microanalysis, perhaps combined with some repeated quantitative measures design. While these are case studies, case study design is an inadequate description of this type of research because of the extraordinary internal examination of an enormous quantity of data. This will be explored later in this chapter in the section entitled “Rules of Evidence for Qualitative Research.” The single-case method has tremendous potential in health care for the examination of rare events, such as heart transplantation or the separation of conjoined twins. But, are the findings of such research important? Piaget (1954/1999) used this design when he observed infants (and took careful notes observing) and developed theories of infant behavior; his research has had an enormous impact on our understanding of infant behavior. 2. Establishing causality with observation and precise, microanalytic, observational description This method is classic qualitative inquiry. It is not used enough as a means of determining evidence, and is the method most in need of development.

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As described in Chapter 3, the use of video recordings enables microanalysis of movement, touch, and talk, and examination of the pacing of the care, so that behaviors, interactions, and responses can be examined. It enables the generation of hard evidence that is irrefutable. Observational research to establish causality was practiced by Oliver Sacks, as exemplified in Awakenings (Sacks, 1973), and I believe it is from this type of research that the compendium of medical signs and symptoms was developed in the 18th and 19th centuries and that new diseases such as AIDS were recognized. Is this research of any assistance to our agenda of saving lives? This method is used in biomechanics and can be used, for example, in observing patient mobility when studying patient falls. This will enable bioengineering solutions, for instances, in the form of safer beds or walking aids, to be developed and trialed. Video is often used for conducting research with nonverbal patients (such as patients with advanced Alzheimer’s disease), for exploring infants’ response to pain, for investigating the breastfeeding dyad, and so forth, but its potential is much greater. Observational methods could be used to explore—and provide evidence of—caregiver intuition. If Benner and Tanner (1987) is correct that nurse intuition is predictive of an impending “patient code,” then let us describe this particular “look” that she reports that patients get before they “code,” so we can formalize this knowledge, teach it, and use it in our daily practice. Evidence from such research would have an impact on the survival rates, particularly in intensive care units and critical care units. Here is another example. Fifty to eighty percent of patient falls occur at the bedside, when the patient is getting into or out of bed. As falls constitute the third leading cause of death in people over sixty-five years of age and as most falls occur at the bedside, this research should be of high priority. The bed as a causal trigger for patient falls must be considered. Nurses know that if patients want to get out of bed, they will, regardless of instructions. With the exception of the low beds used in nursing homes, the implication of bed height as a trigger for these falls or of side rails as a support for patients as they stand, has not been considered. The deck height of a hospital bed is designed as a “one size fits all.” Beds lower automatically to the lowest setting determined by the manufacturer, regardless of the patient’s preference, height, or disability. Qualitatively examining the patient as he or she enters and exits provides indisputable evidence, and a mixed-method design (qualitative and quantitative) will allow for computer modeling to determine the safest height for individual patients.

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Figure 5.1. Lack of support and impaired balance while getting out of bed.

Videotaping patients getting out of bed, or egressing, was the scariest research project I have ever conducted. Videotapes revealed that some elderly men and women, when sitting on the side of the bed, could not reach the floor with both feet and were forced to reach down with one leg or to slide forward until their feet reached the floor, that is, to place their feet on the floor while at the same time sliding off the bed. They needed support to stand, and they held on to the side rail, which, even when in the “up” position, forced them to reach down and to the side. Then, as they began to walk forward, they continued to reach back to hold the side rail while moving forward. As a result, they are off balance, with nothing to reach for as they moved forward. While the man shown in Fig 5.1 could place both feet on the floor to stand, he is off balance and needs to reach backward and to the left to hold the side rail as he moves forward. This is an accident about to happen. Thus the use of qualitative analysis using videotapes is powerful. It enables us to document, to illustrate our practice, and to communicate our findings, and it certainly should be used more often.

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3. Data-less inquiry This design extends from NASA ’s Aviation Safety Reporting System (ASRS), which investigates the previously discussed “near misses.” In this case the incident has not actually occurred, but after a single report of “almost”—a close shave—the circumstances are investigated, warning bulletins are released, and policies are changed. In other words, an intervention is in place before the problem becomes an actual, real problem. How then do we demonstrate its efficacy? The driver of a car avoiding a pedestrian at the last minute does not create a statistic, and dodging another vehicle and avoiding a fender bender does not result in actual cost savings, but inquiry-driven policy changes at the population level, and over time, can indeed save lives and reduce costs. As discussed earlier in this section, because the researchers are not waiting until there is loss of life, but are responding to a hypothetical probability, this approach is the converse of achieving statistical significance and so it is hard to claim credit by counting lives saved. These researchers are working from a theory of causality that states that if something almost happened once, it could really happen later; they are using logic and experience, not experimental design. Their data rely on anonymity in reporting and a guarantee of “no reprisal” to those who report the incidents. These conditions ensure both that the researchers receive the near-miss data and that the data are as complete as possible; such conditions ensure reliability and validity and, most importantly, conditions of evidence that, hopefully, are devoid of the quantitative criteria of replication. 4. Simulation: Participant-less inquiry This is the “crash test dummy” type of research: in order to reduce risk, simulators replace people in certain high-risk situations. Despite the use of models used in teaching, this is rarely used in qualitative observational research. (One exception may be in the case of patient falls, where mannequins were used to simulate falls from the bed [Bowers, et al, 2008]). This does not mean however, that we should forget that the option exists.

Rules of Evidence for Qualitative Research Because quantitative evidence is built on large samples, often huge samples, most of the fit is found huddled around the mean, with extraordinary “incidents” as outliers. The interpretation is then considered safe for most—with a one percent or five percent error. That is, the procedure is considered safe if it is safe for most.

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Qualitative evidence, on the other hand, is built around small samples, sometimes only an N = 1, and the criteria are much more stringent. A problem with a single case declares the entire trial (an intervention) unsafe. Such an approach is more appropriate for nursing phenomena, when we have little control over who, for instance, will be placed in a particular bed and when the manufacturing philosophy is “one size fits all.” Any variation in bed design arises from changes in function. Qualitative evidence is therefore shaped by a set of rules, or principles, that provide a sensible, safe mode of evidence-based practice, which are outlined in the following section.

Use Logic and Common Sense as Methodological Tools Adherence to all of these points requires a change in our values, our perspectives, and our attitudes toward evidence 1. The rule of inclusion: Safe for all Our rule is that an innovation must be safe for all, and our search in the sample is for the one case that is not safe. This will enable us to describe the characteristics of the case or the conditions that were not safe. And related to this, we know that if something has happened once, it may happen again. Qualitative purposeful sampling enables the inclusion criterion. Despite the small size of the sample, researchers can ensure that all major types of participants are included in the trial. This contrasts strongly with quantitative inquiry, which, as was pointed out earlier, accepts a one percent or a five percent error and strictly enforces inclusion/exclusion criteria in sample selection, possibly omitting those most at risk from the trial. 2. The rule of minimizing risk Because we are studying evidence using small samples, our trials can be conducted more quickly and more cheaply than quantitative studies. More importantly, as fewer participants are exposed in the study, our “trials” may impose less risk of harm. 3. The rule of respect for common sense, logic, and the possible/probable The smallest samples are those with no real data at all—no “hard evidence”—just the possibility of data. The acceptance of such an approach means that we must value common sense, logic, and a belief that an “almost” may turn out to be an actual event next time.

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Compelling Evidence The bottom line is that for most qualitative problems the “scientific” approach of quantitative testing uses experimental designs that would place patients at untenable risk. As well as being slow at producing results, it is also expensive. Most importantly, it does not provide the compelling evidence that reveals the problems with the intervention, evidence that we can achieve in a single, small qualitative trial. The norm of counting (how many trials, how many falls, how many injuries) loses relevance with qualitative evidence and, as previously stressed, places patients in untenable risk situations. Take, for example, the qualitative evaluation of floor mats for the protection of the fall-prone patient. Quantitative evaluation of fall protection strategies may be conducted according to the following design: randomize patients (or patient care units or wards) who are at equal risk of falling, assign them to intervention and control groups. Then record the number of falls, or fall injuries, comparing the two groups for statistically significant differences.3 To my knowledge, this strategy has not been conducted to test floor mats, but this is the strategy used to test hip pads (that is, underwear padded with protective foam or hard pads to protect the patient from fracturing a hip). Floor mats have been tested by dropping weights or mannequins on the mat to measure force (Bowers, Lloyd & Powell-Cope, 2008; Laing, Tootoonchi, Hulme, et al., 2006). If floor mats are beneficial and prevent patient injury, the quantitative methods of clinical trials would expose those in the control group to the unacceptable risk of fractured hips, at least until the trial was completed or, using Cochrane standards, until three such independent trials have been completed. Further, if the results were not significantly different, we would still have the cost of the trial, plus the usually excluded costs of inconveniencing patients (perhaps, lost sleep due to discomfort and time required to put these pads on) and the staff time assisting patients and recording results. Now, I need to point out that a patient fall is a relatively rare event, even among the frail elderly in nursing homes, although staff might disagree, and falls resulting in injury are even less frequent events. But we would be waiting for a bedside fall that results in a hip fracture—an ultimately rare event—so this trial would have to be continued for a fairly long period of time, until the necessary number of falls had occurred. While we can see that such a study might be quite beneficial, despite its rather high cost—let’s assume approximately one million U.S. dollars—it simply does not make sense.

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Qualitatively, how would such a study be done? Let us consider a study that conducted clinical testing, using videotaped observational methods, with a purposeful sample of fifteen patients with various types of gaits, three trials (of getting in and out of bed), and random assignment to the position of the rail raised or lowered. Data were collected over a period of one week, the project staff numbered five individuals, the budget was U.S. $10,000, and the risk to patients was minimal (Doig & Morse, 2010). The findings were as follows: • When walking across the mat to the bed, the heel on the beveled edge of the floor mats cannot be compensated for in the patients with impaired gait. Their lowered heel causes the patient to stumble backward, greatly increasing fall risk. • The boggy surface of the floor mat is also a tripping hazard for these patients: weakness of the impaired gait means that, when walking, they cannot lift their feet high enough to “step over” the surface of the rubber mat. • The edge is beveled at enough of an angle to impede the effectiveness of walkers, and it threatens to tip IV poles. • Thus, the mats actually may cause falls, when patients with an impaired gait are getting into bed. The floor mats, intended to increase patient safety by reducing the impact of patient falls from bed, are not safe, and should not be used at the bedside.4 In this case, our research was ethical. We did not, as quantitative researchers do, rely on patients’ falls in order to recognize problems or to compare with an intervention group. No patients were injured in the course of this research. These are not quantitative findings. These findings are from a small study conducted for the cost of U.S. $10,000, excluding PI costs and all of the analysis time. The conclusion—that a mat beside the bed to protect against a fractured hip is not safe for an ambulatory patient—is compelling, logical, and irrefutable. I am suggesting that qualitative researchers have been sidetracked by quantitative accusations that our research lacks rigor. We have been distracted, developing standards that tiptoe around the real issue of compelling evidence, around the real issue that this is the correct and appropriate way to approach some research, and as such must be supported. We have been sidetracked from making an argument that our research is the only way to conduct some clinical research, because it minimizes risk to participants. Rather, I suggest that quantitative research is so expensive in patient care—expensive in lives, funding, clinical clumsiness, and staff and calendar time—that we can no longer afford it.

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Developing Compelling Evidence As researchers, we are tired of conducting underfunded research. Yet, forcing ourselves into a quantitative system does not appear to be the answer. While we know that our research is significant and addresses problems that may otherwise be declared unresearchable, our seemingly insurmountable problem is to convince those who control research funding, curricula, and the publication of texts and mainstream journals that our work is significant. We need to convince those who control publication and dissemination that logic and common sense can produce powerful forms of evidence, and that in many clinical settings we cannot afford, both in terms of morbidity/mortality and dollars, the cost of quantitative inquiry. Qualitative researchers are at the fringes of health research, but remember that it is at the fringes where the greatest advances are often made. We are addressing the confusing and uncontrollable problems that are too difficult to tackle quantitatively. But they are important problems that merit attention. Let us look internally, to ourselves, and bring together all our resources, all we know methodologically, and all that we know as professionals. Then, with a united voice, a rising chorus, demand the resources and attention that our research deserves. In summary, the poor fit of the Cochrane Criteria for qualitative inquiry is evident when one examines the assumptions necessary to determine evidence, the nature of qualitative inquiry and the types of problems that are suited for qualitative inquiry. It is clear that a mode of evidence for qualitative inquiry is necessary, but it must take a different form than that employed by quantitative researchers. What should be the nature of that evidence? 1. The nature of validity in qualitative inquiry is constructed internally in the process of inquiry according to the descriptive or interpretive nature of the project, and externally by the review of the study. 2. We must select models of evidence, primary forensic models, from other disciplines that work qualitatively, and combine these with logic and common sense, according to the goals of the inquiry. Such evidence—compelling evidence—meets the criteria for application for research findings, drastically reduces the cost of trials, reduces risk and harm to participants, and is therefore an inherently ethical mode of inquiry.

Chapter 6

The Maturation of Qualitative Health Research

Science is often described as an iterative and cumulative process, a puzzle solved piece by piece, with each piece contributing a few hazy pixels of a much larger picture. But the arrival of a truly powerful new theory in science often feels far from iterative. Rather than explain one observation or phenomenon in a single, pixelated step, an entire field of observation suddenly seems to crystalize into a perfect whole. The effect is almost like watching a puzzle solve itself. (Mukherjee, 2010, p. 362) Mukherjee makes research seem an exciting race to solve a puzzle to which there is one right answer, and maybe that is how it is in medicine. But it is not usually the case in qualitative health research—or even qualitative inquiry in medicine. Qualitative research solves different kinds of questions—questions that are considered “soft” but are hard to answer. But that is not all. We also have “technical” problems in the way our research is incrementally building. First, in qualitative inquiry (and qualitative health research), the research results are scattered over a huge domain that may be labeled human behavior, human perception, or human experience. Qualitative health takes the piece of the pie relating to health and illness, but it is not entirely divorced from quantitative research as a whole: we sit side by side in mixed-method research. We share concepts and theories, and even the understanding of some phenomena. We have considered, expanded, modified, altered, and developed these methods, theories, and concepts to fit our context and our phenomena. Therefore, while we overlap topically with quantitative research, we use a different perspective, different level of analysis, and different approach to research that gives us a different type of outcome. 115 Qualitative Health Research Research: Creating a Discipline by Janice M. Morse, 115-131. ©2012 Left Coast Press, Inc. All rights reserved.

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The scattered topics that we study are usually small, isolated, and disjointed islands of knowledge that are rarely used as stepping stones to the next level of inquiry. This is, in part, our own fault. First, we overemphasize the importance of working inductively in our research, of bracketing (van Manen, 1990) what is known, to prevent bias in our study.1 As a consequence, almost everyone begins inquiry at a new, fresh starting line, deliberately ignoring previously conducted research, qualitative or other. And, of course, in a single study, a new investigator does not get very far starting from scratch each time. In subsequent studies, investigators will have developed categories or themes, and labeled them—usually using emic labels, that is, terms used by the participants themselves—and these labels, of course, differ from the ones selected by the first investigator. Second, qualitative researchers do not deliberately replicate, and this is appropriate. Replicating another study makes inductive processes impossible, and hence, threatens validity. Further, replication makes little sense in qualitative inquiry: if the first study is rigorous, there is no point in replicating the study; you already have your answer. But the problem arises that qualitative researchers tend to believe that in order to be published you must “have found something new.” They are correct—indeed, that is one of the criteria for publication in the journal Qualitative Health Research. Therefore, the way the second investigator ensures that he or she has found something new is to use emic labels (usually colloquial terms selected from their transcribed interviews) as permanent labels for their categories, themes, and concepts. They ignore the terms used in the literature, and publish their own interpretation. This results in a cluttered literature, previously denigrated as “theoretical congestion” (Morse, 2000b), to describe many studies addressing a similar topic at the same level of description. These studies do not build on each other, but rather compete, and do not make a substantive, incremental contribution. There is a way around this, which is to use prior studies as a scaffold or skeleton—as a foundation that you can systematically and inductively build upon (Morse & Mitcham, 2000). When using a scaffold, you must know the boundary of the topic, that is, what is and what is not an instance of your phenomena. The researcher can then explore the phenomena inside the boundary, perhaps even microanalytically, contributing new knowledge. When using a skeleton, the bony framework inside the scaffold serves as the base from which to build inductively. The skeleton may be findings from your own or other research. From these foundations, researchers move inductively, building on the metaphorical “muscles, fat, skin, and organs,” hence making a contribution

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to what is known. Both of these models, the scaffold and the skeleton, add new knowledge, which in turn reinforces or endorses the work of the first investigators. An alternative to using a scaffold or a skeleton is: • to select and develop a concept (or concepts) that appears in the first descriptive study; or • to explore the phenomenon laterally, that is, within different contexts or conditions. Recently, there has been much interest in metasynthesis. Once several studies have been conducted in a similar area, researchers synthesize the work in an attempt to reduce the “noise” or the extraneous features of the studies and to develop the common concepts or themes. But the informational gains are slight. Given, then, that descriptive studies investigating phenomena and overlapping with each other provide little incremental gain in knowledge, the contribution of individual qualitative health research studies to our understanding of health and illness overall appears feeble at best. But actually, as a collective, they become a strong chorus. Where have we gone wrong as individual researchers? The great ethnographers of the 1960s, (for instance, Howard Becker and Erving Goffman) and later the grounded theorists (Barney Glaser and Anselm Strauss with their students at the University of California, San Francisco) published excellent, applied, theoretical work that was useful, exciting, and groundbreaking. The work of the European phenomenologists is still cited and used. Yet today, we continue to publish articles proudly but our work often goes unnoticed, does not change policy, and is not used clinically. We tend to blame the clinicians for the lack of application of our work; however, I am not certain that that is entirely fair. Some say that our problem is that we publish in articles, rather than monographs. Perhaps that does weaken our case, as we attempt to communicate our work in fifteen pages or less. But that is only a part of the problem. “Salami slicing” projects—publishing small pieces in various journals—fractionates our work, so that it loses its significance and impact (Morse, 1997b). I can think of very few research programs in qualitative inquiry that make a substantial push to develop knowledge and apply their work to the clinical areas. And when they do, they are stigmatized. Despite the fact that we support research programs, those qualitative researchers who do publish their research programs extensively or in a monograph are told, “You never cite anyone else!”—whether or not there is anyone else to cite.

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Nevertheless, despite these impediments, qualitative research is published and is sometimes noticed. In the next section, we will consider the mechanics of how qualitative health research is weaving its way into our knowledge base. This is not the ideal way, but we present a description of what is actually happening.

How Qualitative Research Contributes to Knowledge2 Knowledge develops slowly and in clusters. It is rare that a seminal study leapfrogs to a position of influence and remains as a milestone. And if this does occur, I am not certain why one particular study is constantly cited, rather than another. The fact remains, that no matter how important you think your dissertation is, once it is published, it will probably make its mark by adding strength incrementally to a number of similar studies, rather than being cited singly as a seminal study. This is how all knowledge develops, although sometimes a cluster of studies may go “off course” and need to be corrected. Also, many fall into a black hole or die in mediocrity, ignored or forgotten. Look at the number of times your articles have been cited—a humbling task—and this is usually an indicator of use by other researchers, not by clinicians. Qualitative research is no different. It goes through phases of development to clinical application, testing, and adoption. As studies relating to a topic accrue, they go through phases, changes in scope, context, and focus, as the concepts and theories develop. As this knowledge becomes more accepted and more known, researchers become more certain. The Accrual of Qualitative Knowledge There are eight phases, or levels of development, of qualitative inquiry (Morse, 2012a), from the first exploratory studies of the phenomenon to the implementation of an intervention (see Table 6.1). Most qualitative health research studies are conducted at Level 1; hence, the adage that “qualitative studies go nowhere.” This may be true for many studies, but if you consider these studies to be a part of a whole, then this “nowhere hypothesis” is not entirely correct—they do contribute to the whole. When examining Table 6.1, note that the studies at the various levels are not conducted in a stepwise, linear direction. An investigator may start at Level 2 and then, because he or she realizes that they do not have adequate description, conduct a Level 1 study; alternatively, he or she may start at Level 3. The important point is that rarely does a study include several levels at once, or include information for Levels 3, 4, and 5 in the same study.

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Table 6.1. The Phases of Development for Qualitative Health Research, from Exploring a Phenomenon to Application Level

Contribution to knowledge development

Level 1

Study of phenomena The concept emerges as “interesting” or “significant” within the context being described.

Level 2

Delineation and description of the anatomy of the concept Inquiry targets the concept, using various methods of concept identification or analysis to describe the anatomy of the concept.

Level 3

Examination of the concept in different situations Researchers now focus on the concept as it appears in different contexts or situations.

Level 4

Exploring the relationship of the concept of interest with other concepts Examination is undertaken of the co-occurrence or interaction of the concept of interest with other concepts in a particular setting.

Level 5

Metasynthesis The literature about the concept is synthesized to identify common attributes and to remove the “noise” (i.e., the “mock” attributes or those associated with one set of particular circumstances).

Level 6

Model and theory development Model building begins by examining and identifying internal processes, mechanisms, and their linkages. The strength and interactions of the attributes and the therapeutic interaction of the concept are important. The internal mechanisms and the interrelationships of the attributes are explored, usually using grounded theory (Forbes, 1999; Morse & Doberneck, 1995).

Level 7

Assessment and measurement Quantitative researchers may develop questionnaires and instruments to measure the concept, to determine its prevalence epidemiologically, to test the qualitative model, and to test emerging hypotheses.

Level 8

Clinical application and evaluation of outcomes The concept has now matured and is used formally in therapy, both quantitatively, as for instance, in assessments (Martin & Stermac, 2010), and qualitatively, as a framework for practice or interventions.

Source: Morse, J. M. (2012a). Introducing the First Global Congress for Qualitative Health Research: What are we? What will we do—and why? Qualitative Health Research, 23, 147-156. Reprinted with permission of Sage Publications.

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Level 1: Identification of significant concepts Level 1 studies explore phenomena that appear interesting, that need describing. They may target something that appears problematic, therapeutic, difficult, or simply interesting. The researcher may elect to use any qualitative method that describes (hopefully the most appropriate according to the question and other factors): ethnography, grounded theory, phenomenology, narrative inquiry, and so forth. Their goal is primarily to see what is going on. While these studies are generally descriptive, the data will be synthesized and the results may include a minor, lower-level theory. Some themes or concepts will have been identified. Some of these concepts may be common and obvious, while others will be new, named, described, and delineated. Hopefully the researcher will have linked his or her findings with the literature, but this, unfortunately, is an uncommon occurrence. Level 2: Description of concepts At Level 2, the researcher has identified the major concept of interest, and the purpose of inquiry is to develop it further. The concept may be a lay concept (one that is used in everyday language, such as dignity, privacy, care, or suffering) or a scientific concept (one that has been identified in the process of doing research and defined operationally). The researcher uses methods according to what is known about the concept and its level of maturity (Morse, Mitcham, Hupcey, & Tasón, 1996, Morse, in press), which range from the methods of concept analysis, such as those suggested by Rogers and Knafl (2000), to qualitative methods that enable description and delineation of the concept. From such an inquiry, the attributes (characteristics), boundaries, antecedents, and consequences are identified and delineated. Ideally, researchers can now agree on the nature of the concept, and the inquiry can move forward. Level 3: Studying the concept in different situations Researchers conducting studies at this level commence their study by targeting the concept, rather than the phenomenon, and waiting for the concept to emerge inductively in the process of data collection. They therefore seek to study caregiving, bereavement, resilience, or whatever in a certain group or situation. The selected concept provides the terms for the literature search, whereas the context of the study is of secondary importance. The researcher is using the information about the concept—what is known about its boundaries, attributes, antecedents, and consequences—to plan ahead. In their study, they will be looking

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for differences in the form of the concept according to characteristics of the participants (gender, ethnicity, and so forth) in individual or family groups. The form of the concept is important for qualitative health research, perhaps changing in participants with different medical conditions, symptoms, or health problems. Conditions that we frequently see investigated recently are participants with human immunodeficiency virus and/or acquired immune deficiency syndrome (HIV/AIDS), sexually transmitted diseases, chronic conditions such as diabetes and arthritis, and spinal cord injuries. These studies provide important information on two levels. First, attributes that remain consistent in the concept in various situations are probably true attributes, a part of the concept. Second, those attributes that change in strength, but remain in the concept, and are altered because of context, provide significant information as the research moves toward constructing theory. Level 4: Exploring the relationship of the concept with other co-occurring concepts Studies become more complex—and more representative of reality— when the researcher examines more than one concept in a single setting. The researcher must ask: Are these concepts independent? Do they co-occur? How do the interactions between two concepts change when they merge or they separate? Do they run parallel or intersect? And, when examining concepts in another culture, is the concept altered or changed, and if so how? Are the attributes the same or different? These questions are important, for if the concept changes form, it is not a culturally universal concept. Further, as the concept responds to conditions within the context, new forms of the concept may appear. For instance, in the previously discussed context of hope in the heart transplant unit, where participants have only one chance at a transplant (and the alternative is death), the form of hope becomes “hoping for a chance for a chance” (Morse & Doberneck, 1995). The stakes are very high, and those in this situation are very aware that they are hoping against hope. Level 5: Synthesizing knowledge By this time, there have been many studies conducted on the concept, and it is moving toward maturity. Once the concept has been described in many qualitative studies in various contexts, researchers should consider conducting a metasynthesis. Researchers have enough data (that is, studies of the various types described in the previous chapters), from enough

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perspectives, to determine that the conceptual attributes (or characteristics) will be present in every case. Because we know that variations in the strength or the role of the attributes give rise to different forms of the concept, it should be relatively easy at this point to identify the types or forms of the concept(s) of interest. The outcomes of metasynthesis, then, should be a higher level of abstraction and with consensus on labels and definitions for the concept. Level 6: Model and theory development Qualitative researchers begin model building by examining and identifying internal processes and mechanisms and their linkages. This may take place within a project in the course of data collection or by using the literature as data, extending from a meta-analysis. At this point, concepts are more than labels to a qualitative researcher. We are interested in the strength and interactions of the attributes, and what the concept does therapeutically. As collections of behaviors, concepts are not static, but change their form to fit a particular situation. Exploring the process of development and utilization of the concepts, researchers explore the internal mechanisms and the interrelationships of the attributes, usually using grounded theory. Researchers examine studies exploring how the concept is used—how it is manipulated and supported by nurses and physicians in the provision of care, by relatives in interactions or lay caregiving, and by the patient within his or her cultural context—thereby leading to solid, mid-range theory. This process may be extended to explore how the concept links with other concepts and how attributes and the boundary of the concept link as shared attributes of another concept. Concepts are “opened,” and the common or shared characteristics are where the two concepts join. We study how concepts change during trajectories, and how the strength and ordering of attributes change as, for instance, the researcher moves through the process, focusing on the concepts and hence developing an emerging theory. Level 7: Assessment and measurement By this stage, quantitative researchers may have become interested in the concept, developing questionnaires and instruments to measure the concept to determine its prevalence in the population epidemiologically, and designing quantitative experiments to test emerging hypotheses. The concept will find its way into conceptual frameworks, or itself be considered a conceptual framework, and will be “opened” so that its attributes form the framework.

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Level 8: Clinical application and evaluation of outcomes Ever since the advent of evidence-based medicine, clinical application and utilization is becoming a formal research task in which clinical problems are identified and appropriate research-based interventions, selected to solve the particular problem, are deliberately applied and evaluated. Then, if they pass this particular test, they are adopted into practice. Interestingly, this process of evaluation tends to be done on a case-by-case, hospital-by-hospital, or unit-by-unit basis, rather than in the coordinated and funded manner of medicine. To summarize, decades of work by many research teams working relatively independently form a foundation from which concepts are identified, theories are developed and generalized, and insights and interventions are developed to improve practice. However, this process of conducting research and building knowledge is not sequential, but rather haphazard. Researchers follow their own research programs, their own disciplinary agendas, and their personal interests, and they respond to funding calls and clinical opportunities. And as qualitative researchers, we teach our students to be skeptical of the work of others and to value and prioritize principles of induction. All of this slows down the progression of knowledge development. Not all concepts are developed this way. For instance, coping (Lazarus, 1966) and social support (Cobb, 1976) were scientific concepts developed by quantitative researchers as operational definitions. Even models such as the Health Belief Model (Leventhal, Brissette, & Leventhal, 2003) had limited qualitative input. Most of the concepts and models used in health care have been qualitatively derived. However, there is a vast volume of qualitative research which, considered collectively, can no longer be ignored. Nevertheless, this system—if it is one—must be examined and improved. Knowledge Accrues Qualitatively Researchers conduct projects to answer questions that, from their perspective and skill set, are important, will provide answers in areas that are “deficient,” need be understood, and will make a difference to care and to health. Presently, outside an organized research group, research is not a coordinated effort, but rather a haphazard progression of ideas that, if funded, are researched, published, read, and sometimes implemented. Some topics are explored in a cluster because of a funding agency’s “call for proposals” and provision of funding or because of a perceived or urgent health care need.

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Published qualitative research covers a broad spectrum of topics. As a result, if you search by method, you will find that libraries contain a fascinating conglomerate of studies on a vast array of topics, conducted on different populations, at different levels of abstraction, from different theoretical perspectives, using different methods, and so forth. The onus is on the researcher who is interested in investigating a particular topic to identify what is useful and what is important. The researcher must also identify the method, the context, the population, the theoretical base, and so forth. If the investigator is able to write a successful grant application and have the study funded, in a few years the stack of articles in the library will grow a little larger and we will know a little more. While this knowledge appears to accrue in minute increments in a haphazard fashion, there are a few important patterns within this seemingly chaotic system. Let us consider how research develops knowledge within the context of Table 6.1. Qualitative Description In addition to knowledge accruing, as discussed above, qualitative knowledge may also be classified according to its level of description-abstraction. Typically research programs begin by describing the phenomenon, unless, of course, the phenomenon of interest is abstract. Level 1: Description Level 1 descriptions are important as a group, as they accrue information across settings, diseases, responses, or actions, but not usually as a single study. However, sometimes they are particularly interesting if the research is reporting on a topic that is difficult to access or takes an unusual and unexpected perspective. An example is the discovery and documentation of an important phenomenon. Consider for instance, Chandice Covington, who in the course of doing fieldwork in Malindi District of Kenya discovered non-puerperal feeding, or induced lactation in grandmothers (Varnum, Covington, Woodbury, et al, 2003). Grandmothers who had previously borne children were able to re-establish lactation and breast-feed surrogate infants (usually their grandchildren). This is an exceedingly important survival function. If their daughters or daughters-in-law were HIV positive or had contracted AIDS, it was a matter of survival for the infants. This observation, of grandmother lactation, is highly significant, because it is a function that was (and perhaps still is) considered impossible and was incomprehensible in our western paradigm.

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Level 2 and Level 3: Towards conceptualization and abstraction Lay Concepts The most frequently used concepts in qualitative health inquiry have a long history in health care, a history that began before qualitative methods were used to explore concepts. I am thinking of caring, suffering, compassion, and comfort, which have been profoundly influenced over time by philosophy and religion. Qualitative research, which arrived late in the developmental scene, is making a contribution in investigating implied meanings and the therapeutic use of these concepts in health care. Other commonly explored concepts are critical to understanding the patient’s experience, the caregiver-patient interaction, and even the caregiver’s experience. These concepts include trust, hope, privacy, dignity, and so forth. Qualitative research is making an important contribution in developing these concepts and refining their definitions and implicit meanings. More significantly, the lay use of these concepts and the lay language that they use are making an important contribution, through qualitative inquiry, to our understanding of illness behaviors. On the other hand, some concepts clearly exist as lay concepts in illness behavior but have not been developed and accepted into health care and have not competed with other scientific concepts. For example, enduring is a concept that is poorly developed in health care, despite the fact that we see patients enduring pain and loss daily. Emily Dickinson (1873–2010) described the expression of enduring: The soul has Bandaged moments— When too appalled to stir These lines illustrate the non-responsiveness of the expression made during enduring, when the face appears bandaged, protecting an expression of distress. In movies, we see behaviors of enduring, as reflections on everyday life. For instance, in the film Accidental Tourist (1988/Tyler, 1985), there is a scene in which actor William Hurst is asked to identify his 9 year-oldson who has been killed in a shooting. Hurst’s behavior mirrors enduring behavior—a behavior which, to date, has not yet been granted a place in health care. We therefore find ourselves with a qualitatively-derived concept that is firmly established in lay language and the arts but is not yet accepted into health sciences. Scientific concepts Concepts that have been created in the process of doing research are defined by an operational definition and are often measured by quantitative instruments. These are coping, empathy, social support,

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quality of life, and so forth. Some of these—such as coping—have been so successful that they have crossed into everyday language and now compete with everyday concepts (for instance, the concept managing competes with coping). Qualitatively-derived concepts The smallest of these categories is qualitativelyderived concepts. These concepts have been identified and labeled in the course of descriptive qualitative inquiry (Level 1), but they do not have an equivalent in lay language, nor have they been used quantitatively. As inquiry continues, the label begins to reoccur in the literature. For instance, preserving self or preserving the self is emerging as a concept from several studies (see Table 6.2). At first glance it appeared that, despite their similar names, these concepts are different, but closer inspection reveals that each type of preserving self has strategies of self-protection. That is, the attributes of the concepts are similar in each situation. One fruitful area for qualitative metasynthesis would be to identify recurring qualitatively-derived concepts in the literature, and then further develop them as concepts in their own right, moving the inquiry to Level 5. Levels 4 to 6: Qualitatively-derived theories Qualitatively-derived theories eventually develop and provide frameworks for client evaluation, providing care, establishing and evaluating health programs, and simply understanding behavior. Importantly, they also provide essential foundations and frameworks for valid, efficient, and effective quantitative research. The most important characteristics of qualitative theories are: 1. They are mostly the outcome of the research project. That is, they are not the hypothesized (created) framework used to sort data or to confirm in the process of proposing research. 2. Because they are the outcome of the research project, they are based on data, on observation, on some inference, on the research of others, on known concepts, on new concepts, and on actual and hypothesized (but logical) linkages. That is, the theories consist of some previously known facts, some new information, some inferences from that information, and some logical extension of that information. Small, explanatory-descriptive theories These are explanatory theories, describing what is going on—almost a concept in motion. These theories explicate the interaction between the attributes, are generalizable, and reveal alternative outcomes.

Author(s)

Morse & Johnson

King & Jensen

Morse & O’Brien

Irurita & Williams

Mogobe

Howard, Balneaves, Bottorff, & Rodney

Date

1991

1994

1995

2001

2005

2011

Definition of “preserving self’

“. . . developing personal measures aimed at preventing or reducing harm inflicted by others as a result of one’s infertility” (p. 26). Preserving the self was the overarching decision-making process evident in the participants’ descriptions. The women used 7 decision-making strategies (engaging with others, looking inward, paying attention to emotions, relying on intuition, making sense of numbers, weighing the pros and cons, and taking time.” These led to 5 decision-making styles: snap, intuitive, deliberative, deferred, if-then approaches (p. 506).

Preserving the self: the process of decision making about hereditary breast cancer and ovarian cancer risk reduction

“This reciprocal process used by nurses and patients to preserve their own and each other’s integrity involved: contributing to care— cooperating; prioritizing and rational sacrificing; justifying compromised care and lowering expectations; and protecting self by attracting or repelling.” (p. 597).

The strategies used to preserve self required deliberate action, focused energy, and tremendous effort, and changed at each stage of the model. At the beginning, when physical survival was in jeopardy, the strategies were primarily physical. Protecting self was a process of “taking time out” and of shutting down in the stage of disruption. During the stage of enduring the self, the strategy was passively learning to “take it” and to bear the treatments. Finally, in the stage of striving to regain and preserve the self, the work was in redefining the self as a disabled person (p. 886).

Getting through the surgical experience (waiting, getting there, surviving, being there and moving on) was achieved using the following strategies: relating, making sense, managing, and normalizing what was happening to them. These behaviors were directed towards preserving self (p. 99).

Denying and preserving self: Batswana women’s experiences of infertility

Balancing and compromising: nurses and patients preserving integrity of self and each other

Preserving self: from victim, to patient, to disabled person

Preserving the self: women having cardiac surgery

Towards a theory of illness; The Preserving self was described as a strategy used in Stage III of the Illness Constellation Model, Illness Constellation Model Striving to regain self. (Morse & Johnson, 1991). In order to preserve self, the individual asserts himor her-self and works to regaining control.

Title

Table 6.2. Development of Preserving Self as a Qualitatively-derived Concept

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Mid-range theories While qualitative theories are often classified as midrange theories, they range from relatively minor mid-range theories developed from one project to larger theories developed from several projects that are conducted in different contexts, on different types of participants, or even with different topics held together by higher level concepts. From the above descriptions of theory, we find that qualitative health research has a special niche in knowledge development for health research. It has specialized content, and makes a unique and essential contribution to our understanding of health.

Difficulties with Clinical Dissemination Qualitative interventions consist of two different types of interventions that are applied and used in different ways. 1. Some interventions provide a “conceptual frame” for practice, usually fitting a certain type of patient or patient problem and explaining behaviors, the course of the illness, the interactions with caregivers, and so forth. The conceptual frame is compared with the actual behaviors, and the behaviors are recognized as fitting or not fitting the descriptions in the frame. For instance, if we are using the theory of Chronic Grief (Parkes, 1998) and recognize that the patient fits the description, we may classify the behaviors as “chronic grief” but not intervene. The individual clinician may or may not use the information; it rarely becomes a part of the patient’s care plan. The insights may or may not be shared with other nurses caring for the patient. In other words, the knowledge or intervention, if used, is not overtly changing practice, but rather is providing explanation for labeling and understanding the behavior. For example, the previously described work on enduring and the different ways that nurses interact with patients who are enduring, may or may not be used by a single nurse, as the concept has not yet become formalized so as to consciously guide nursing interactions. 2. With other interventions the description or the concept identified is already used in the clinical arena. The qualitative inquiry has given the concept a name, or a label, that makes it evident or consciously used. Clinicians recognize the concept and may adopt the new label, but they do not change their practice. An example of such a concept is “vicarious pain” or the feeling of another’s pain, which we labeled compathy (Morse & Mitcham, 1997; Morse, Mitcham & van der Steen, 1998), as was mentioned in the discussion of methods in Chapter 4.

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It is ironic that qualitative interventions are not readily grasped and incorporated into care practices. In 2012, useful science is considered to be a questionnaire, an assessment tool, or a therapeutic intervention; that is, it was something a nurse or caregiver may do, rather than a way of being or interacting.

What is the Solution? Clearly there is a need to extend our methods to make the results of our inquiry fit these expectations of a concrete intervention. This requires some effort on our part. Extending our methods to produce a product for implementation This is an area where much work is needed, for without clinical application our research is useless. The fact is that our research usually observes the status quo, that is, the problem, rather than the intervention. If we only know the problem, then how do we envision the intervention? The most common way is to make rather obvious recommendations directly from the theory. This could be done by logical extension of the theory or by linking to interventions that are already known or have already been identified. The outcomes are always important, often unexpected, and usually measurable. The translation of the categories, especially from grounded theory, can be converted into an assessment guide (Morse, Hutchinson, & Penrod, 1998) to determine if each strategy has been attained. An example of this is the Hope Assessment Guide (Penrod & Morse, 1997), which converts the grounded theory strategies into assessments that may be used to determine which stages of hoping the person has attained. If the person has, in the opinion of the caregiver, not even identified a hoped-for goal, the caregiver can assist with this step; if the person has unrealistic hopes, these can be modified; if the person is in need of support to bolster hope, this can be provided; and so forth. Thus the Hope Assessment Guide is clinically useful in the rehabilitation period. Dissemination through education It is short-sighted of us to focus entirely on clinicians as the sole route to getting our results into practice. If most of our research on the art of caregiving is not being utilized in practice, we must change our route of communication for implementation. The traditional route of communication is “wait and see.” We publish our findings and then wait passively until clinicians become interested and pick up the interventions. This is fraught with problems, such as:

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• Clinicians do not read research articles; the number of journals and articles is overwhelming. • We expect clinicians to make the leap between researcher recommendations and implementation. • The gap is wide; most research languishes in the space between research and practice. • If ever a practice is accepted clinically, it is often in a single unit, a single hospital; it does not become standard practice, written into texts, or taught in schools to new nurses. In a recent application to the National Institute of Nursing Research, my rejected application contained this comment: “This applicant has done considerable work on concepts. Is this work being used clinically?” How could I possibly know? No one writes, “Hey Jan, I really like your work on suffering. Can I use it in my practice?” I do know if another researcher picks it up (because the citation is tracked by the bibliographic services), but not a clinician. In 2012, the rebuttal that such qualitative work is basic science does not achieve the funding. We have to find another route for utilization. I think the answer is to write texts on the art of nursing and include all of the concept work and our insights and understandings into patient and family behaviors. When we look at the truly successful dissemination projects in qualitative inquiry—Benner’s From Novice to Expert (1984), for instance—we find these were not published as short articles but as text targeted to the right audience. Researchers now have to extend themselves and take this extra step. Funding agencies will have to extend their guidelines and pay for this additional work, and universities will have to revise their criteria for scholarship. Will such dissemination replace the research article? I think not—the researcher needs a different kind of information in the article than does the clinician. Thus, researchers will have to prepare both, recognizing the two audiences.

Are We Mature Yet? I don’t think that qualitative research is mature yet. Criticisms keep coming. But even if these obvious criticisms were clarified and were no longer used to discredit qualitative inquiry, it is still a young discipline. We have many methods to refine and sort out, and the present trend toward “method smoothing,” that is, just using a strategy as a method, is disconcerting. Some new methods, even “popular” methods, violate basic

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principles and produce thin, weak, and obvious results. The only qualitycontrol people should be those actually in the field, the senior investigators who understand rules and exceptions and the rationale for both. We are developing on many fronts at once. Qualitative research results, existing as many individual studies, are accruing a body of knowledge from which concepts emerge. These concepts are then used in different situations and with different populations, and their relationship with other co-occurring concepts is examined. The topic is then ready for metasynthesis, followed by model and theory development. Quantitative measurement may follow. Lastly, clinical application and evaluation of the outcomes will move us closer to maturity. As our methods of dissemination become more sophisticated and diverse, findings will become integrated into practice and policy. But the road is political and it will be long and sometimes hazardous.

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Chapter 7

Establishing Qualitative Health Research as a Discipline

In this volume, I have discussed the necessity of qualitative health research for building a solid understanding of people’s perceptions of health and their health beliefs, attitudes, and behaviors. Yet the question remains: How will it be done? Will it simply emerge? Or, will it require deliberate effort? Presently, an enormous number of researchers from various disciplines are doing qualitative health research and writing articles, and many are writing books. The content is included in qualitative methods courses. Since 1991, there have been international conferences on qualitative health research sponsored by the International Institute for Qualitative Methodology (University of Alberta, Canada) and, since 2011, by the Global Congress for Qualitative Health Research (GCQHR). Qualitative texts are appearing with increasing frequency in all of the health professions. Qualitative health research is becoming a standard part of curricula, contributing to our understanding of health, to health policy, and to health practices. While qualitative inquiry is considered an essential part of graduate research training in many universities, it is not on an equal basis with quantitative inquiry. We still have some distance to go; as recently as 2008, qualitative research was excluded from a Canadian urology conference (Morse, 2008). An earlier crisis—the lack of mentors and supervisors to support new qualitative researchers—is easing as competence is gained, more researchers become experienced in qualitative inquiry, and issues of quality and standards are resolved. There is no doubt that, with the growing support, the field is maturing.

133 Qualitative Health Research Research: Creating a Discipline by Janice M. Morse, 133-143. ©2012 Left Coast Press, Inc. All rights reserved.

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There is still much to do. And we first have to become clever at arguing our position and countering the arguments against qualitative methods. In the next section I will consider the most common complaints about qualitative inquiry and provide my best response.

Politically Supporting Qualitative Health Research Back to the Rigor Debate Most qualitative inquiry does not concern itself with “truth”—truth as a hard, verifiable, concrete proof. This type of truth has only one right answer. It is obvious, and can be described and verified against the original article or other similar objects. It can be photographed or videotaped. It can be verified using logic or argumentation or by experimentation. And it can be replicated. However, from a qualitative perspective, this type of proof is not very interesting. Qualitative researchers are interested in meaning, in perceptions, experience, and attitudes. These are individual and subjective. They vary between individuals and by groups. They change, sometimes rapidly. They may be patterned. They are context-bound, culture-bound, and relative. They are hard to describe and very hard to measure, and yet they are sometimes referred to as “soft” research. The analysis of perceptions, experience, and attitudes depends on the researcher’s interpretation, developed logically and systematically, with stepwise presentation of data. As many conclusions as possible are linked to the work of others, but new interpretations are highlighted. The theoretical outcome is logical, possible, interesting, and exciting, and it explains “what is going on.” And it may be applied to future instances in the same or other contexts, where it should be recognizable by others, shedding light on a previously confusing situation. Nevertheless, classical problems recur in our literature: Why do abused women return to live with their abusers? Why are patients noncompliant? My major research questions (and those of many clinicians) are, Why won’t patients stay in bed? and How do we psychologically manage patients with psychic pain or agonizing pain? How, then, is this research “verified”? Can we distinguish between an accurate, well-executed qualitative study and one that has been completely confabulated? First we must look at the nature of the study itself. One study, in itself, does not consist entirely of soft data. All studies include some hard data, even if they are only demographic data from the participants. For

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instance, ethnography consists of descriptions of cultural values and beliefs, analysis of dreams, and so forth. But it also consists of descriptions of kinship systems, work patterns, and so forth—things that can be verified. These we call “verifications with external referents.” That is, the study should be consistent in some areas with the work of others. Any inconsistencies should be examined and raise a “red flag” with reviewers, unless they are explained in the discussion. Second, the power of the research is in the theoretical outcome of the study. The theory must have been constructed systematically in the course of the study, in a logical, interesting, and plausible way. The results themselves extend from the researcher’s certainty and convince the reviewer or reader. However, because of the reliance on the work of others (the first criterion above), in qualitative inquiry we do not have the “breakthrough” insights that Mukherjee described in the quotation at the beginning of Chapter 6. This alone inhibits the development of qualitative inquiry and diminishes the significance of our work and the maturation of the field. Generalization and Other Nitty–Gritty Problems Qualitative inquiry has inherited a set of criticisms of qualitative methods, methods that appropriately belong in quantitative inquiry. These criticisms have neither relevance nor pertinence to qualitative work. Yet they remain a stigma, devaluing qualitative findings—with comments such as, “Of course, it’s only a qualitative study!”—and putting down and ignoring our exquisite work. Ironically, it is this work that our quantitative colleagues would find most helpful. In the corridors I hear, “I think it’s coping. Let’s call it coping!”(or whatever the concept is that they are trying to incorporate into their research). This “I think . . .” approach of approximate matching of the data to a concept label is invalid, clumsy, and crude. Researchers need conceptual refinement, techniques of agreement, as much as they need statistical accuracy. I am not certain whether mixed-method or team research will fill this need or compound the problem. Regardless, let us look at the major criticisms of qualitative inquiry by first exploring and understanding why its opponents are making that remark (“Where they are coming from?”) and then, providing a fast “elevator-speech”1 response. This abbreviated approach may not provide instant enlightenment for the others and therefore may not solve our problems, but it is better than standing with one’s mouth open. At least we will remain in the dialogue.

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“Qualitative research is not generalizable.” Where they are coming from Quantitative generalization is a process of randomly sampling from populations with known characteristics. The findings (often rates, incidences, etc.) may then be generalized to other populations with those same characteristics. Because qualitative samples are not selected randomly, and are small, quantitative researchers believe the findings are not generalizable. The elevator speech response We are generalizing the concepts and the theoretical findings, which have been removed from the original context and compared with the results of others. To generalize the findings, we look for a setting with similar problems/characteristics, and recontextualize the results. Such results are useful and insightful, and may provide programmatic guidance and so forth. This response may be given to many other “of course” statements, for example, “Of course, that study was with the XXX group, and we are interested in the yyy.” In other words, the response may be that they are different cultural groups, different illnesses (for instance, Parkinson’s disease as compared to strokes), or simply different situations. “Qualitative research is biased.” Where they are coming from If they are criticizing purposeful sampling, these criticizers believe that qualitative research should be describing the medium, the norm, the usual. The elevator speech response #1 Qualitative researchers are describing new phenomena. To do this, you purposefully select extreme cases—the best examples—of whatever you are interested in. This gives you the clearest cases to describe the ones with the least “noise,” or extraneous error. Once you have identified the characteristics, boundaries, and so forth of these cases, you know what you are looking for in cases with less extreme contexts. Incidentally, this is the basic process by which all science moves forward. Where they may also be coming from If you suspect the person is accusing the researcher of bias that “reports what the researcher is looking for,” you answer differently. The elevator speech response #2 Qualitative research has checks and balances in the process of inquiry to check and recheck each finding at every step of the way. If the researcher attends to the principles of sampling, saturation, abduction, negative cases, confirmation, and logical progression through the study, bias and other sorts of errors are eradicated in the process of inquiry.

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“One investigator cannot code reliably.” Where they may be coming from Those who demand inter-rater reliability for coding are afraid that a single coder may be biased or careless, thereby causing the results to be worthless. The elevator speech response Inter-rater reliability is only useful if you have a semi-structured interview where all participants have been asked the same questions in the same order, you have a large sample, and your purpose may be to transpose your textual to numeric data. In fact, inter-rater reliability should only be used for semi-structured interview descriptive coding; for open-ended interviews and interpretative analysis, it invalidates the coding. If you have unstructured interviews and have done the interviews yourself, processes of inter-rater reliability keep the analysis shallow, obvious, and descriptive. The reason for this is that a segment of text has more meaning to the person who has done the interviews and understands its full meaning in context than to the second “checker,” who just sees a phrase or a short paragraph and takes it at face value. “That study was done ten years ago!” Where they may be coming from In hard science, where results are incrementally derived, there is usually a definite answer to a problem, based upon research publication dates. The elevator speech response This may be dated research if the researcher is examining behaviors and responses to new technology or procedures, but normally behaviors, concepts, and theories remain pertinent. For instance, Goffman’s work on stigma (1963) is still relevant today, and we would be shortsighted, if we were studying stigma, to ignore his work because of a ten-year limit that decreed that the work had expired. Now that we have countered most of the objections to qualitative inquiry, we come to the quintessential question: If qualitative health research is important, requires special skills and knowledge, makes a difference to our perception of care, is rigorous, and is essential for the provision of effective, efficient, and humanistic care, who champions it? Who foots the bill?

Supporting a Mature Qualitative Health Research “New” disciplines and areas of inquiry do not usually emerge without two kinds of support—first, internal support or demand from faculty and students within the university milieu, and second, external support from governments, granting agencies, and so forth.

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Internal support for qualitative inquiry has been demanded by the students for the past two decades. Initially, students had trouble finding faculty expertise and courses to support their qualitative research interest, but this concern has largely dissipated. Students who completed qualitative dissertations in the 1990s are now well-established faculty members with students of their own. They now have input into curriculum and have the option of teaching qualitative electives. However, this is not true for all universities—there are still some, or departments within universities, which have no support for qualitative research and some of these universities are, for instance, leaders in nursing and consequently influential in funding organizations. The stigma has not entirely gone away. Interestingly, the resources that support academic scholarship, primarily in methods, are developing nicely in the health sciences. Not only are courses available, they are likely to be a required course. Often this course is only a beginning “survey” course (that is, it reviews most of the major methods and strategies of qualitative inquiry), and there is a gross imbalance between quantitative and qualitative expectations of the student. However, this is being slowly adjusted. Some disciplines are more receptive and eager to embrace qualitative inquiry than others. Education is an example, with more than 96% of the dissertations in this discipline at the University of Alberta using qualitative methods. The use of such methods in nursing graduate studies is uneven, with some schools very strong, while in others qualitative inquiry is almost absent. In medicine, mainly in family and community medicine and in psychiatry, qualitative inquiry is arriving, but slowly. Mixed-method design is helping to make qualitative inquiry acceptable; for instance, in the Johns Hopkins School of Nursing, qualitative methods are not taught, but there is an elective course on mixed methods. Research texts and journals are proliferating (see Appendix I). Qualitative research methods texts are now more likely to appear as methodspecific and as disciplinary-specific texts. The fact that medicine, nursing, occupational therapy, social work, community health, and counseling each has its own qualitative text supports the contention that we are a discipline with many dimensions. Since the first qualitative health research conference was held in Edmonton, Canada, in 1991, it has become standardized and is now held annually. There are now sections for qualitative health research in disciplinary qualitative conferences, and some disciplines are particularly allied to qualitative inquiry, as illustrated by the annual Transcultural Health Research Conference.

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For those who find that qualitative methods classes are lacking in their academic programs or practitioners who want to refine their skills, workshops lasting from a few hours to one week are available, often “piggybacking” on a conference. These are sometimes available online, and they are also a place where a mentoring relationship can be established between a researcher and a student. The number of journals is proliferating, with Qualitative Health Research pertaining to health generally and other sub-disciplinary journals emerging, such as the Qualitative Social Work. Qualitative journals are published in many languages: for instance, there is one in Korean and one in Germany published in German, Spanish, and English. Indications that we have “made it” as a discipline are that our research is now published in journals with a reasonable high impact factor, appears in medical databases, and is subsequently cited.

Role of the Federal Government, Foundations, and Donors The public mandate for the governmental support of universities and the setting of priorities for funding has not yet extended to qualitative inquiry. Perhaps it is because we have failed to demonstrate our use for health care. One important exception is the support of the Alberta Heritage Foundation for Medical Research, which provided a three-year grant (and a renovation grant) of almost $3 million to establish the International Institute for Qualitative Methodology (IIQM) and provided conference grants to support several annual conventions. It was unfortunate that the IIQM was unsuccessful in obtaining additional operating funds. Grant support in Canada, as in other countries, follows diseases, rather than the concepts that qualitative researchers explore, even though some of these concepts, such as noncompliance and support, directly affect health outcomes. The IIQM did, however, succeed in achieving a six-year training grant of $1.6 million from the Canadian Institute for Health Research for pre- and post-doctoral students in a training program entitled “Enhancing Qualitative Understanding of Illness Process and Prevention”(EQUIPP). The role of universities in developing new horizons, establishing new methods of inquiry, and providing resources is not working very well for qualitative inquiry, and we are competing at a time when resources are scarce. Nevertheless, it is my conviction that the researchers must keep doing it—doing it to make a difference.

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Ideal Model for Qualitative Research Methodological Development From the preceding discussion, it is clear that we are making headway in establishing qualitative health research, but we should periodically take stock and not lose our focus. Preparation of New Researchers The training of new researchers could take many forms, including, most notably: • developing courses and programs within the university calendar and special interest groups; • developing short, “non-credit” continuing education courses for those not registered at the university, including online courses for non-residents; • sponsoring workshops and conferences to provide opportunities for training and for the dissemination of new methods; • publishing methodological journal articles and texts (both basic and advanced) that support classroom teaching and provide a “methodsmenu” for researchers who are preparing proposals, and that provide solid citations for proposals and other situations where methods must be justified and documented; these should be available internationally, in various languages, according to the demand; • writing articles, perhaps in blog format, to provide guidance to the researchers in the field who strike unexpected problems and must receive a rapid response, including seeking new methodological approaches; • increasing the availability of mentors, perhaps even mentors for groups of researchers, to teach them how to think qualitatively. Support for Research Senior researchers must constantly monitor the granting agencies and try to ensure that every committee has an adequate membership of qualitative researchers to review proposals, to provide fair reviews to the committee, and to argue the significance of the research and the importance of its funding. Funding committees must allow for additional time in their grants for qualitative research, recognizing that the analysis and conceptualization takes much longer than quantitative research if the results are to be meaningful.

Establishing Qualitative Health Research as a Discipline  141 

Consulting Confident, strong qualitative researchers are needed to participate in qualitative and mixed-methods proposals to ensure that the qualitative component is appropriately conducted, the principles of qualitative inquiry are supported, and the results are weighed correctly and presented fairly. A Place in Academia The development and role of qualitative health researchers in academia must include membership on transdisciplinary teams and respect from their academic colleagues to ensure that qualitative research is treated fairly—both in space and in representation in the university. Inaccurate rationale for not including qualitative research is unacceptable. For instance, it is not acceptable to exclude qualitative inquiry in the curricula because of a perception that it is not funded at the agency level; the correct action for such a perception is to teach qualitative inquiry and to ask questions of the agency about their funding. We cannot continue without special effort on the part of the government, foundations, and universities. Support must come consistently and fairly across all research areas. In the United Kingdom, there is governmental support for qualitative centers and special competitions for qualitative research. In Europe, the German online journal Forum: Qualitative Social Research (Forum Qualitative Sozialforschung) is supported by governmental hard funding. There, conferences, workshops, and qualitative methods are proliferating. In the United States, the main support for qualitative inquiry comes from the International Institute for Qualitative Inquiry, which is located at the University of Illinois at Urbana-Champaign and spearheaded by Norman Denzin. Several other centers also support the qualitative researcher—along with their research methods—for instance, the Odham Institute at the University of North Carolina. But the bottom line is that the US and Canadian centers must have adequate hard funding if they are to support the necessary staff and develop reasonable programs. What should an institute dedicated to qualitative health research look like? My dream for the IIQM—now shared by many in United States, Canada, Britain, Australia, Asia, and Europe—was something like the Hastings Center for Bioethics. Such an institute should have the following components: • a place for scholarship, think tanks, postdoctoral and visiting professors; • a place for lecture series that the university would showcase;

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• a place for both a doctoral specialty and a certificate program in qualitative research; • a place for doing qualitative research—to discuss the difficulties in research, seek assistance, and disseminate outcomes; • a place with a process to publish monographs and to support a journal; • a place for discussion, debate, and writing, and for doing research in the development of methods; • a place for sponsoring conferences and workshops; and • a place that could, with one strong voice, bring qualitative inquiry to the attention of policy within the local, regional, and national governments.

Now What? The future is predictable. Qualitative health research will become normalized and be a standard part of undergraduate and graduate education. Methods texts will become increasingly sophisticated and be a standard resource for research design. Concurrently, qualitative methods will become less of an isolated specialty, so that some knowledge of qualitative inquiry will be essential for most faculty. Graduate students will be required to have some competence in qualitative methods. The public, already aware of the advantage of stories and narrative inquiry and used to hearing journalists interviewing the “man on the street,” will transition easily to hearing qualitative results to justify public expenditure. I am hoping that the main result of putting human emotions back into research will be in the humanization of health care. Hence, this specialty.

Final Words Research into the experiential and interpersonal aspects of care introduces extraordinary methodological challenges. Because the subjective, emotional, and interactive components of care contexts are challenging to study, researchers have avoided this critical part of care. Developing such knowledge will guide practitioners in framing optimally safe, effective, and satisfying interactions with people and in creating environments for healing and well-being. Attaining an understanding of humanizing care requires a dedicated research focus. I charge those who share my commitment to continue to conduct qualitative research to build a solid evidence base for the construction of qualitative health research. What I am proposing is a movement—not

Establishing Qualitative Health Research as a Discipline  143 

a formal organization or group attached to any particular university. The movement will last as long as it is needed and move in directions that are needed. To do this, we need an army of researchers. We need students. We also need resources—qualitative health research texts, methods texts, funding, support from our deans, and support from our governments and foundations. And we need a forum for discussing, disseminating, and synthesizing qualitative research, for example, the GCQHR, which is described in Appendix 2. Together, we can overcome the limitations of language, restricted databases, and communication. Together, we can support and lobby to create a system that supports our collaboration, and we can build qualitative health research.

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Appendix 1

Resources Qualitative Health Research Texts

General Qualitative Health Research Texts Findlay, L., & Ballinger, C. (2006). Qualitative research for allied health professionals: Challenging choices. New York: John Wiley & Sons. Green, J., & Thorogood, N. (2009). Qualitative methods for health research. London: Sage. Grbich, C. (1999). Qualitative research in health: An introduction. St. Leonards, NSW: Allen & Unwin. Hansen, E. (2007). Successful qualitative health research: A practical introduction. St. Leonards, NSW: Allen & Unwin. Holloway, I. (2005). Qualitative research in health care. Berkshire, UK: Open University Press. Liamputtong Rice, P., & Ezzy, D. (2002). Qualitative research methods: A health focus. New York: Oxford. Morse, J.M., & Field, P.A. (1995). Qualitative research methods for health professionals. (2nd ed). Thousand Oaks: Sage. Pope, C., & Mays, N. (2006). Qualitative research in health care. (3rd ed). Malden, MA: Blackwell.

Nursing Holloway, S., & Wheeler, I. (1996). Qualitative research for nurses. Oxford: Blackwell. Leininger, M. (ed). (1985). Qualitative research methods in nursing. New York: Grune & Stratton. Munhall, P. (ed). (2012). Nursing research: A qualitative perspective. (5th ed). Sudbury, MA: Jones & Bartlett. Streubert Speziale, H.J., & Carpenter, D. R. (2003). Qualitative research in nursing: Advancing the humanistic perspective. (3rd ed). Philadelphia, PA: Lippincott. 145 Qualitative Health Research Research: Creating a Discipline by Janice M. Morse, 145-146 ©2012 Left Coast Press, Inc. All rights reserved.

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Social Work Plagett, D.K. (2008). Qualitative methods in social work research (2nd ed). Thousand Oaks, CA: Sage.

Public Health Ulin, P. R., Robinson, E.T., & Tolley, E. E., (2005). Qualitative methods in public health: A field guide for applied research. San Francisco: Jossey-Bass.

Medicine Crabtree, B. F., & Miller, W. L. (1999). Doing qualitative research. (2nd ed). Thousand Oaks, CA: Sage. Engel, J. D., Zarconi, J., Pethtel, L. L., & Missimi, S. A. (2008). Narrative in health care: Healing patients, practitioners, profession and community. Oxon, UK: Radcliff.

Occupational Therapy Carpenter, C., & Suto, M. (2008). Qualitative research for occupational and physical therapists: A practical guide. Oxford: Blackwell. Cook, J. V. (2001). Qualitative research in occupational therapy: Strategies and experiences. Del Mar, CA: Thomson Learning.

Rehabilitation Carpenter, C., & Suto, M. (2008). Using qualitative research: A practical guide for occupational and physical therapists. New York: John Wiley & Sons. Hammell, K. W., & Carpenter, C. (2004). Qualitative research in evidence-based rehabilitation. Philadelphia: Elsevier Health Sciences.

Appendix 2

The Global Congress for Qualitative Health Research1

An important result from qualitative inquiry is the development of solid and significant descriptive and interpretative research, development of its own concepts and midrange theories. As concepts develop, they become standardized within the field, enable communication between researchers, practitioners, and educators, and provide a foundation for theory development. These theories then provide the basis for understanding illness (and health) behavior, enable clinicians to recognize the course and phases in the illness experience, to identify interventions, and obtain an evidence base for these interventions. This knowledge is then moved into education and used for policy change. In order to develop qualitative research, to build a solid evidence base for the construction of qualitative health research, we must collaborate, synthesize, and compare studies internationally and cross-culturally. We must construct powerful theories to improve the health of all people of all nations. This is the role of the Third Generation. Three groups have emerged internationally for humanized health care. First, in 2007, under the guidance of Professor Earmporn Thongkrajai, University of Khon Kaen, Thailand, an international congress was held on this topic. It has been repeated biannually, in China in 2009, in Hanoi, Vietnam in 2011. The second group is the International Institute for Human Understanding, spearheaded by Patricia Munhall, Miami. But the main push for the movement as a research program has come from the University of Bournemouth. Under the leadership of Les Todres, Kate Galvin, and Immy Holloway (2009) their research center has published, primarily using phenomenological, hermeneutic, and existential perspectives, articles to describe processes of humanizing health care. Others of 147 Qualitative Health Research Research: Creating a Discipline by Janice M. Morse, 147-151. ©2012 Left Coast Press, Inc. All rights reserved.

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this research group, also led by Immy Holloway, developed qualitative expertise in Britain through the sponsorship of workshops and annual conferences, and these authors have contributed to our understanding about the aesthetic experience of the patient’s lifeworld (Holloway & Todres, 2007). The third group came from the International Sites of the International Institute of Qualitative Methodology. For instance, under the leadership of Kyung Rim Shin, the Korean Institute for Qualitative Health Research has published a journal, translated many methods texts, and offered workshops and conferences. Similarly, development of qualitative health research occurred in South Africa under the care of Marie Poegenpoel and Chris Myberg, in Israel (Lea Kacen), in IberoAmerica (Francisco Mercado), and other IIQM International sites.

The Global Congress for Qualitative Health Research Together, we are now creating the Global Congress of Qualitative Health Research (see http://global-qhr.org/). It is not a formal organization, nor a group attached to any particular university, but a movement. The movement will last as long as it is needed, and move in directions that are needed. In 2011, in Seoul, South Korea, Dr. Rim Shin Kyung hosted the first Global Congress for Qualitative Health Research (GCQHR), bringing qualitative researchers together internationally. The second is in Milan Italy in June 2012, and the third is to be held in 2013 in Thailand. Future conferences will be listed in Qualitative Health Research and on the website. Mission Statement To develop the capacity, expertise and methods to explore, using qualitative methods, the behavioral, experiential, and aspects of care contexts so that humanizing care may be investigated, improved, taught and practiced. The GCQHR will target attitudes, beliefs, expectations, practices, and behaviors influencing the quality of care, the administration of that care, conditions judged to warrant (or not) empathetic care, responses to care and therapeutics, and anticipated and actual outcomes of humanizing care. For example, such care has been associated with less suffering and better outcomes, even though the humanizing aspects of health care are often covert, and difficult to observe or describe; yet, if these vital components of care are not emphasized, they remain elusive, omitted from curricula and from professional work. Suffering is unabated.

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The Scope of the GCQHR Researchers will, as a part of the GCQHR, investigate such important topics as: • the moral, ethical, political, economic, and cultural aspects of care; • the delivery of health care, including hospital, community, industrial, school, and home settings, nationally and internationally; • the care of vulnerable populations, such as older people, people who live in poverty, and those suffering from abuse; and • methods of evaluating humanizing care at all levels of application and analysis, from individual to population. The research focus includes: • individuals’ experiences and conceptualizations of well-being and quality of life; • responses to illness, such as suffering, noncompliance, coping, stress, and pain; • caregiver interaction; for instance, establishing trust, enhancing treatment adherence, breaking bad news, and promoting social support; • caregiver and family responses to caring, such as burnout, empathy, grief, and bereavement, and the supportive relationship; and • the macro-level contexts in family, community, and organizational systems, such as support for infant feeding, and the micro-level contexts, such as patterns of touch or conversation. Humanizing aspects of care require research methods that can optimally describe these phenomena. These are usually qualitative forms of inquiry, although, on occasion, quantitative or mixed methods may also be appropriate. As qualitative methods become more commonly taught and more widely used in applied research, one of the functions of the Congress will be the support, training, and development of qualitative inquiry in humanizing care. GCQHR Objectives 1. Develop and support transdisciplinary researchers in providing research methods education and training essential to the exploration of humanizing aspects of care. 2. Conduct research to describe, identify, and test interventions and models of care delivery that will improve the humanizing aspects of care.

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3. Support, synthesize, and disseminate research pertaining to humanizing care contexts. 4. Enhance the development of innovative and novel ways of translating findings of qualitative research into practice, so they can make a difference in care. GCQHR Institute Functions Conduct of Research • Provide a framework for international collaboration in transdisciplinary research. • Set an agenda for research in the humanizing aspects of care. • Influence and comment on contemporary policy and politics pertaining to research as ethics, research assessment, and funding. • Identify funding sources to support the conduct of research in the humanizing aspects of care for individual investigators, students, preand postdoctoral fellows, and centers of excellence. • Conduct research that will address critical issues in the provision of humanizing care. Research Methods Education and Training • Ensure and stimulate academic philosophical discourses underpinning qualitative inquiry. • Produce workshops, seminars, and courses in humanizing care research, qualitative and quantitative methods, and concept and theory development. • Prepare and publish methodological articles/texts and journals; • Facilitate pre- and postdoctoral training. • Consultation and mentoring, including assistance with grants, analysis, writing. • Support and dissemination of research. • Support transdisciplinary “think tanks” to identify new approaches to studying humanizing care contexts; become a meeting place for transdisciplinary dialogue. • Provide research consultation to established and emerging investigators; • Conduct state-of-the-art research reviews and critiques, summaries, and metasyntheses.

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• Publish articles in journals (e.g., Qualitative Health Research); publish author texts, edited books, and monographs. • Provide an annual international conference. Structure of the GCQHR To support the mission of the Global Congress for Qualitative Health Research, the international board of qualitative health researchers will oversee the website and the location of congresses and other policy matters. Individuals who share a commitment to the mission and objectives of the Institute are invited to list themselves in the website or on the mailing list, without cost. The annual Congress will be announced in Qualitative Health Research and on the website.

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Notes

Chapter 3 1. Portions of this chapter were presented as Why Humanized Health

Care, the Saiyud Niymviphat Lecture and Plenary Address at the First Asian International Conference on Humanized Health Care, Khon Kaen, Thailand, December 3-5, 2007; and The Role of Qualitative Inquiry in Humanizing Health Care, keynote address at the Qualitative Research Conference, University of Bournemouth, England, September 6, 2010. Chapter 5 1. This chapter is adapted from: Morse, J. M. (2006a). The politics of evidence. Qualitative Health Research, 15, 395-404, and reprinted in Morse, J. M. (2006c). The politics of evidence. In N. Denzin & M. Gairdina (Eds.), Qualitative inquiry and the conservative challenge (pp. 79-92). Walnut Creek, CA, Left Coast Press, Inc. Reprinted with permission from Sage Publications and Left Coast Press, Inc. respectively. 3. As applications funded by the National Institute of Health are, with rare exceptions, in the public domain, this information could feasibly be obtained one application at a time. 3. It is important to note at this point that in the United States (and Canada), floor mats are not considered a medical device and therefore have been placed on the market without the benefit of testing by the U.S. Food and Drug Administration.

153 Qualitative Health Research Research: Creating a Discipline by Janice M. Morse, 153-154. ©2012 Left Coast Press, Inc. All rights reserved.

154  notes

4. Let’s not throw floor mats out altogether. I donated our project mat to the X-ray department. During a chest X-ray, the patient must stand in an uncompromising position and sometimes faints, and the technician is not always there to assist the person. Should a fall occur during the procedure, the mat then would protect the patient from injury. Chapter 6 1. While this practice is appropriate for phenomenology, we have extended it to all qualitative inquiry. This bracketing outside of phenomenology is due in part to the common—and false—belief that qualitative inquiry is not generalizable, so that what the first investigator may have found in another context is not considered useful to the second investigator embarking on a similar topic. 2. An earlier version of this section was presented as a keynote address at the first Global Congress of Qualitative Health Research (GCQHR), Korea, June 2011 (See Morse, 2012b). Chapter 7 1. An elevator speech is a summary of whatever you wish to say in the short time an elevator takes to travel from the top floor to the first floor of your building (or vice versa). Appendix 2 1. The material in this appendix is from: Morse, J. M. (2007, December). Why humanized health care? Plenary address. Saiyud Niymviphat Lecture at the First Asian International Conference on Humanized Health Care, Khon Kaen, Thailand.

References

Agar, M. (2003). Toward a qualitative epidemiology. Qualitative Health Research 13: 974-986. DOI: 10.1177/1049732303256886 Allen, C. (1997). Spies like us: When sociologists deceive their subjects. Lingua Franca, http://linguafranca.mirror.theinfo.org/9711/9711.allen.html Downloaded February 16th, 2012. Apesoa-Varano, E.C., Barker, J. C., & Hinton, L. (2011). Curing and caring: The work of primary care physicians with dementia patients. Qualitative Health Research, 21, 1469-1483. DOI:10.1177/1049732311412788 Barach, P., & Small, S. D. (2000). Reporting and preventing medical mishaps: Lessons from non-medical near miss reporting systems. British Medical Journal, 320, 759-763. Barbour, R. S. (2001). Checklists for improving rigour in qualitative research: A case of the tail wagging the dog? British Journal of Medicine, 322,(7294), 1115-1117. PMCID: PMC1120242 Beatty, A. (2010). How did it feel for you? Emotion, narrative, and the limits of ethnography. American Anthropologist, 112(3), 430-443. DOI:10.1111/j.15481433.2010.01250.x Beck, C. (2011). A metaethnography of traumatic childbirth and its aftermath: Amplifying causal looping. Qualitative Health Research, 21, 301-311. doi:10.1177/1049732310390698 Becker, H., Geer, B., Hughes, E. C., & Strauss, A. (1961). Boys in white: Student culture in medical school. Chicago, IL: University of Chicago Press. Behruzi, R., Hatem, M., Goulet, L., Fraser, W., Goulet, L., Masako, I., & Misago, C. (2010). Facilitators and barriers in the humanization of childbirth practice in Japan. BMC Women’s Health, 10, 25. Retrieved from http://www.biomedcentral.com/1471-2393/10/25 Benner, P. (1984). From novice to expert: Excellence and power in clinical nursing practice. Prentice-Hall. 155 Qualitative Health Research Research: Creating a Discipline by Janice M. Morse, 155-166. ©2012 Left Coast Press, Inc. All rights reserved.

156  references

Benner, P., & Tanner, C. (1987). How nurses use intuition. American Journal of Nursing, 87(1), 23-31. Benner, P. (1994). Interpretative phenomenology: Embodiment, caring, and ethics in health and illness. Thousand Oaks, CA: Sage. Beres, M. A., Herold, E., & Maitland, S.B. (2004). Sexual consent behaviors in same-sex relationships. Archives of Sexual Behavior, 33, 475-486. Bergstrom, L., Richards, L., Morse, J., & Roberts, J. (2010). How caregivers manage pain and distress in second stage labor. Journal of Midwifery and Women’s Health, 55, 38-45. doi:10.1016/j.jmwh.2009.05.001 Bergstrom, L., Richards, L., Proctor, A., Bohrer-Avila, L., Morse, J., & Roberts, J. (2009). Birth talk in second stage labor. Qualitative Health Research, 19, 954964. DOI:10.1177/1049732309338613 Blow, A. J., Swiecicki, P., Haan, P., Osuch, J.R., Symonds, L. L., Smith, S.S., Walsh, K., & Boivin, M.J. (2011). The emotional journey of women experiencing a breast abnormality. Qualitative Health Research, 21, 1316-1334. DOI:10.1177/1049732311405798 Botelho, E. M., Elstad, E.M., Taubenberger, S. P., & Tennstedt, S. (2011). Moderating perceptions of bother reports by individuals experiencing lower urinary tract symptoms. Qualitative Health Research, 21, 1229-1238. DOI:10.1177/1049732311405682 Bourgealt, I., Dingwell, R., & de Vreis, R. (2010). The Sage handbook of qualitative methods in health research. London: Sage. Bowers, B., Lloyd, J., & Powell-Cope., G. (2008). Biomechanical evaluation of injury severity associated with patient falls from bed. Rehabilitation Nursing, 33, 253-259 Brink, E., Karlson, B. W., & Hallberg, L. (2002). To be stricken with acute myocardial infarction: A grounded theory study of symptom perception and careseeking behavior. Qualitative Health Research, 7, 533-543. Byrne, K., Orange, J.B., & Ward-Griffin, C. (2011). Care transition Experiences of spousal caregivers: From a geriatric rehabilitation unit to home. Qualitative Health Research, 21, 1371-1387. DOI: 10.1177/1049732311407078 Carpenter, C., & Suto, M. (2008). Using qualitative research: A practical guide for occupational and physical therapists. New York: John Wiley & Sons. Carter, S. (2002). How much subjectivity is needed to understand our lives objectively? Qualitative Health Research, 12, 1184-1201. DOI: 01.1177/1049732302238244 Cheek, J. (2011). Moving on: Researching, surviving, and thriving in the evidence-saturated world of health care. Qualitative Health Research, 21, 696703, DOI: 10.1177/1049732310395608 Cobb, S. (1976) Social Support as a moderator of life stress. Psychosomatic Medicine, 38, 300-13. Cochrane, A. L. (1972/1989). Effectiveness and efficiency: Random reflections on health services. British Medical Journal. [Original publication: London: Nuffield Provincial Hospitals Trust, 1972].

references  157 

Connell, L. (2004, April/May). Qualitative analysis: Utilization of voluntary supplied confidential safety data in aviation and health care. Paper presented at the Qualitative Health Research Conference, Banff, Alberta, Canada. Cook, J. V. (2001). Qualitative research in occupational therapy: Strategies and experiences. Delmar Thomson Learning. Copeland, D. & Heilemann, MS. V. (2011). Choosing “The best of the hells”: mothers face housing dilemmas for their adult children with mental illness and a history of violence. Qualitative Health Research, 21, 520-533. DOI:10.1177/1049732310387936 Corbin, J., & Morse, J. M. (2003). The unstructured interactive interview: Issues of reciprocity and risks. Qualitative Inquiry, 9 (3), 335-354. DOI: 10.1177/1077800403009003001 Côté, J. J., Morse, J. M., & James, S. G. (1991). The pain experience of the postoperative newborn. Journal of Advanced Nursing, 16, 378-387. DOI: 10.1111/ j.1365-2648.1991.tb03426.x Crabtree, B. F., & Miller, W. L. Doing qualitative research. (2nd ed). Thousand Oaks, CA: Sage. Cricco-Lizza, R. (2011). Everyday nursing practice values in the NICU and their reflection on breastfeeding promotion. Qualitative Health Research, 21, 399409, DOI:10.1177/1049732310379239 Dahlberg, K., Dahlberg, H., & Nyström, M. (2008). Reflective lifeworld research. Lund, Sweden: Studentlitteratur. Denzin, N. K. (2010). The Qualitative Manifesto: A call to arms. Walnut Creek CA: Left Coast. Dickinson, E. (1873/2010). The soul has bandaged moments. http://charlesmatthews.blogspot.com/2010/01/poem-of-day_30.html Doig, A. K., & Morse, J.M. (2010). The hazards of using floor mats as a fall protection devise at the bedside. Journal of Patient Safety. 9(1), 68-75. doi: 10.1097/PTS.0b013e3181cb439a Ellis, C. (1986). Fisher folk: Two communities on Chesapeake Bay. Lexington: University of Kentucky Press. Ellis C. (1995). Emotional and ethical quagmires in returning to the field. Journal of Contemporary Ethnography. 24, 68–98. Engel, J. D., Zarconi, J., Pethtel, L. L. & Missimi, S. A. (2008). Narrative in health care: Healing patients, practitioners, profession and community. Oxon, UK: Radcliff. Fazio, A., Hunt, G., & Moloney, M. (2011). “It’s one of the better drugs to use”: Perceptions of cocaine use among gay and bisexual Asian American men. Qualitative Health Research, 21: 625-641. DOI:10.1177/1049732310385825 Field, P. A., & Morse, J. M. (1985). Nursing research: The application of qualitative approaches. London: Croom Helm. Finlay, L., & Ballinger, C. (2006). Qualitative research for allied health professionals: Challenging choices. West Sussex, England: John Wiley & Sons.

158  references

Forbes, M. A. (1999). Hope in the older adult with chronic illness: A comparison of two research methods in theory building. Advances in Nursing Science, 22(2), 74-87. Gelech, J. M., & Desjardins, M. (2011). I am many: The reconstruction of self following acquired brain injury. Qualitative Health Research, 21, 62-74. DOI:10.1177/1049732310377454. Germain, C. (1979). The cancer unit: An ethnography. Wakefield, MA: Nursing Resources. Ghose, T., Swendeman, D.T., & George, S.M. (2011). The role of brothels in reducing HIV risk in Sonagachi, India., Qualitative Health Research, 21, 587600, DOI:10.1177/1049732310395328 Giorgi, A. (1970). Psychology as a human science. New York: Harper & Row. Giorgi, A. (2009). The descriptive phenomenological method in psychology: A modification Husserlian approach. Pittsburgh, PA: Duquesne University Press. Glaser, B.G. (1978). Theoretical sensitivity. Mill Valley, CA: Sociology Press. Glaser, B.G., & Strauss, A. (1965). Awareness of dying. Chicago, IL: Aldine. Glaser, B.G., & Strauss, A. (1967). The discovery of grounded theory. Chicago, IL: Aldine. Glaser, B.G., & Strauss, A. (1968). Time for dying. Chicago, IL: Aldine. Goffman, E. (1961). Asylums. Garden City, New York: Doubleday. Goffman, E. (1963). Stigma: Notes on the management of a spoiled identity. Englewood Cliffs, N.J.: Prentice-Hall. Grbich, C. (1999). Qualitative research in health: An introduction. NSW Australia: Allen & Unwin. Green, J., & Thorogood, N. (2009). Qualitative methods for health research. London: Sage. Hadders, H. (2011). Negotiating leave-taking events in the paliative medicine unit. Qualitative Heath Research, 21, 233-248. DOI:10.1177/1049732310384404 Hall, J. (2011). Narrative methods in a study of trauma recovery. Qualitative Health Research 21: 3-13, doi:10.1177/1049732310377181. Hammell, K.W., & Carpenter, C. (2004). Qualitative research in evidenced-based rehabilitation. Philadelphia PA: Elsevier Health Sciences. Hammell, K.W., Carpenter, C., & Dyck, I. (2004). Using qualitative research: A practical guide for occupational and physical therapists. Philadelphia, PA: Elsevier Health Sciences. Hansen, E. (2007). Successful qualitative health research: A practical introduction. NSW, Australia: Allen & Unwin. Hirano, Y., Yamamoto-Mitani, N., Ueno, M., Takemori, S., Kashiwagi, M., Sato, I., Miyata, I., Kimata, M., Fukahori, H., & Yamada, M. (2011). Home care nurses’ provision of support to families of the elderly at the end of life. Qualitative Health Research, 21, 199-213. DOI:10.1177/1049732310383866 Holloway, I. (2005). Qualitative research in health care. Berkshire, UK: Open University Press.

references  159 

Holloway, I., & Todres, L., (2007). Thinking differently: challenges in qualitative research. International Journal of Qualitative Studies on Health and Well-being, 2 (1), pp. 12-18. Holloway, S., & Wheeler, I. (1996). Qualitative research for Nurses. Oxford: Blackwell. Hopfer, S., & Clippard, J. R. (2011). College women’s HPV vaccine decision narratives. Qualitative Health Research, 21, 262-277. DOI:10.1177/1049732310383868 Howard, A. F., Balneaves, L. G., Bottorff, J. L., & Rodnew, P. (2011). Preserving the self: The process of decision-making about heredity breast cancer and ovarian cancer risk reduction. Qualitative Health Research, 21, 502-519. DOI: 10.1177/1049732310387798 Irurita, V. F., & Williams, A. M. (2001). Balancing and compromising: nurses and patients preserving integrity of self and each other. International Journal of Nursing Studies, 38, 579-589. PII: S0020-7489(00)00105-X James, I., Andershed, B., & Ternestedt, B-M. (2009). The encounter between informal and professional care at the end of life. Qualitative Health Research, 19, 258-271. DOI: 10.1177/1049732308329309 Jaye, C., & Fitzgerald, R. (2011). Occupational overuse syndrome: Moral ambiguities of New Zealand health professionals. Qualitative Health Research, 21, 1400-1412, doi:10.1177/1049732311405998 Kayser-Jones, J. (2002). Malnutrition, dehydration, and starvation in the midst of plenty: The political impact of qualitative inquiry. Qualitative Health Research, 12, 1391-1405. DOI: 10.1177/1049732302238750 Kelly, K.P., & Ganong, L. (2011). Moving to place: Childhood cancer treatment decision making in single-parent and repartnered family structures. Qualitative Health Research, 21, 349-364. DOI:10.1177/1049732310385823 King, K. M., & Jensen, L. (1994). Preserving the self: Women having cardiac surgery. Heart & Lung: The Journal of Critical Care, 23, 99-105. Kravitz, R.L., Duan, N., & Braslow, J. (2004). Evidenced-based medicine, heterogeneity of treatment effects and the trouble with averages. Milbank Quarterly, 82: 661–687. doi: 10.1111/j. 0887-378X. 2004.00327. x Laing, A. C., Tootoonchi, I., Hulme, A., et al. (2006). Effect of compliant flooring on impact force during falls on the hip. Journal of Orthopedic Research. 24, 1405-1411. Larner, G. (2004). Family therapy and the politics of evidence. Journal of Family Therapy, 26, 17-39. DOI:10.1111/j.1467-6427.2004.00265.x Lau, U., & van Niekerk, A. (2011). Restorying the self: An exploration of young burn survivors’ narratives of resilience. Qualitative Health Research, 21, 1165118. DOI:10.1177/1049732311405686 Lazarus, R. S. (1966). Psychological Stress and the Coping Process. New York: McGraw-Hill. Lekas, H., Siegel, K., & Leider, J. (2011). Felt and enacted stigma among HIV/ HCV-coinfected adults: The impact of stigma layering. Qualitative Health Research, 21, 1205-1219, DOI:10.1177/1049732311405684

160  references

Leininger, M. (1978). Transcultural nursing: A new and scientific subfield of study in nursing. In: Transcultural nursing: Concepts, theories and practices. (pp. 7-30). New York: John Wiley & Sons. Leininger, M. (ed). (1985). Qualitative research methods in nursing. Orlando, CA: Grune & Stratton. Leventhal, H., Brissette, I., & Leventhal E. A. (2003). The common-sense model of selfregulation of health and illness. (p. 42-65). In: Cameron, L.D, Leventhal, H. (ed.) The Self-Regulation of Health and Illness Behaviour. London: Routledge. Liamputtong Rice, P., & Ezzy, D. (2002). Qualitative research methods: A health focus. NY: Oxford. Lincoln, Y. S., & Guba, E. G. (1985). Naturalistic Inquiry. Beverly Hills, CA: Sage. Lock, M. (2002). Twice dead: Organ transplants and the reinvention of death. Berkeley: University of California Press. MacDonald, J-A, Gagnon, A. J., Mitchell, C., Di Meglio, G., Rennick, J., & Cox, J. (2011), Include them and they will tell you: Learnings from a participatory process with youth, Qualitative Health Research, 21, 1127-1135. DOI: 10.1177/1049732311405799 Madison, D.S. (2009). Dangerous ethnography. (pps. 188-197). In Qualitative inquiry and social justice. Ed by N.K. Denzin & M. D. Giardina. Walnut Creek, CA: Left Coast. Martin, K., & Stermac, L. (2010). Measuring hope: Is hope related to criminal behaviour in offenders? International Journal of Offender Therapy and Comparative Criminology, 54(5), 693-705. doi:10.1177/0306624X09336131 McHutchion, E., & Morse, J. M. (1989). Releasing restraints: A nursing dilemma? Journal of Gerontological Nursing, 15, 16-21. McIntosh, M., & Morse, J. M. (2009). Institutional review boards and the ethics of emotion. In N. K. Denzin & M. D. Gardina (Eds.), Qualitative inquiry and social justice (pp. 81-107). Walnut Creek, CA: Left Coast. Mercado-Martinez, F. J., Tejada-Tayadas, L. M., & Springett, J. (2011). Methodological Issues in Emergent Evaluations of Health Programs: Lessons From Iberoamerica. Qualitative Health Research, 21, 1277-1288. DOI: 10.1177/1049732308321755 Merry, L., Clausen, C., Gagnon, A. J., Carnevale, F., Jeannotte, J., Saucier, J-F., & Oxman-Martinez. (2011), Improving qualitative interviews with newly arrived migrant women. Qualitative Health Research, 21, 976-986. DOI:10.1177/1049732311403497 Mogobe, D. K. (2005). Denying and preserving self: Batswana women’s experiences of infertility. African Journal of Reproductive Health/La Revue Africaine de la Santé Reproductive, 9, 26-37. Morrow, K.M., Rosen, R. K., Salomon, L., Woodsong, C., Severy, L., Fava, J.L., Vargas, S., & Barroso, C. (2011). Using integrated mixed methods to develop behavioral measures of factors associated with microbicide acceptability. Qualitative Health Research, 21: 987-999. DOI:10.1177/1049732311404245

references  161 

Morse, J. M. (1997a). Perfectly healthy, but dead: The myth of inter-rater reliability. Qualitative Health Research, 7, 445-447. DOI:10.1177/104973239700700401 Morse, J. M. (1997b). Fragmenting theory: on publishing parts of the whole. [Editorial] Qualitative Health Research, 8, 5-6. DOI: 10.1177/104973239800800101 Morse, J. M. (2000a). Exploring Pragmatic Utility: Concept analysis by critically appraising the literature, In: Concept development in nursing. Ed. by B. Rodgers & K Knafl. (pp. 333-352). Philadelphia: W.B.Saunders Co. Morse, J. M. (2000b). Theoretical congestion. Qualitative Health Research, 10, 715716. DOI.org/10.1177/104973200129118741 Morse, J. M. (2002). Writing my own experience. (Editorial). Qualitative Health Research, 12(9), 1159-1160. DOI:10.1177/1049732302238752 Morse, J. M. (2005). Beyond the clinical trial: Expanding criteria for evidence (Editorial) Qualitative Health Research, 15, 3-4. DOI: 10.1177/1049732304263627 Morse, J. M. (2006a). It is time to revise the Cochrane criteria. Qualitative Health Research, 16, 315-317. DOI:10.1177/1049732305285495 Morse, J. M. (2006b). The politics of evidence. Qualitative Health Research, 15, 395404. DOI:10.1177/1049732305285482. Morse, J. M. (2006c). The politics of evidence. In N. Denzin & M. Gairdina (Eds.), Qualitative inquiry and the conservative challenge (pp. 79-92). Walnut Creek, CA: Left Coast. Morse, J. M. (2008). Excluding qualitative inquiry: An open letter to the Canadian Urological Association. Qualitative Health Research, 18, 583. DOI:10.1177/1049732308316876 Morse, J. M. (2010a). “Cherry Picking”: Writing from thin data. [Editorial]. Qualitative Health Research. 20(1), 3. D01:10.007/104973230935428 Morse, J. M. (2010b). How different is qualitative health research from quantitative research? Do we have a subdiscipline? Qualitative Health Research, 20, 14591464. DOI:10.1177/1049732310379116 Morse, J. M. (2011). What is qualitative health research? In N. Denzin & Y. Lincoln (Eds.), Sage handbook of qualitative inquiry (4th ed., pp. 401-414). Thousand Oaks, CA: Sage. Morse, J.M. (2012a). Simultaneous and Sequential Qualitative Mixed-Method Designs (Ed. P. Munhall), In Qualitative Nursing Research, 5th ed. (Chapter 24, pp. 553-570), Sudbury, MA: Jones & Bartlett. Morse, J.M. (2012b). Introducing the First Global Congress for Qualitative Health Research: What are we? What will we do? And why? [Keynote address] Qualitative Health Research, 21, 147-156. DOI:10.1177/1049732310393257 Morse, J. M. (2012c). Introducing the First Global Congress for Qualitative Health Research: What are we? What will we do—and why? Qualitative Health Research, 23, 1459-1464. Morse, J.M. (in press). Analyzing and constructing the conceptual and theoretical foundations of nursing. Philadelphia, PA: F.A.Davis.

162  references

Morse, J. M., & Bottorff, J. L. (1989). Intending to breastfeed and work. Journal of Obstetrical, Gynecological and Neonatal Nursing, 18(6), 493-500. DOI:10.1111/j.1552-6909.1989.tb00501.x Morse, J. M., Bottorff, J. L., & Hutchinson, S. (1995). The paradox of comfort. Nursing Research 44(1), 14-19. Morse, J. M., & Doberneck, B. M. (1995). Delineating the concept of hope. Image: Journal of Nursing Scholarship, 27, 277-285. DOI:10.1111/j.1547-5069.1995. tb00888.x Morse, J. M., & Doan, H. (1987). Growing up at school: Adolescents’ response to menarche. Journal of School Health, 57(9), 385-389. DOI:10.1111/j.1746-1561.1987.tb03234.x Morse, J.M. & Field, P.A. (1995). Qualitative research methods for health professionals. (2nd ed). Thousand Oaks: Sage. Morse, J. M., & Harrison, M. (1987). Social coercion for weaning. Journal of NurseMidwifery, 32(4), 205-210. doi:10.1016/0091-2182(87)90111-X Morse, J. M., Hutchinson, S., & Penrod, J. (1998). From theory to practice: The development of assessment guides from qualitatively derived theory. Qualitative Health Research, 8, 329-340. DOI:10.1177/104973239800800304 Morse, J. M., & Johnson, J. L. (Eds.). (1991). The illness experience: Dimensions of suffering. Newbury Park, CA: Sage. Online at http://content.lib.utah.edu/u?/ ir-main, 2008 Morse, J. M., & McHutchion, E. (1991). The behavioral effects of releasing restraints. Research in Nursing and Health, 14, 187-196. doi:10.1002/ nur.4770140305 Morse, J. M., Mitcham, C., Hupcey, J. E., & Tasón, M. C. (1996). Criteria for concept evaluation. Journal of Advanced Nursing, 24, 385-390. DOI: 10.1046/j.1365-2648.1996.18022.x Morse, J. M. & Mitcham, C. (1997). Compathy: The contagion of physical distress. Journal of Advanced Nursing, 26, 649-657 Morse, J. M., Mitcham, C., & van der Steen, V. (1998). Compathy or physical empathy: Implications for the caregiver relationship. Journal of Medical Humanities. 19, 51-65. Morse, J. M., & Mitcham, C. (2000). Exploring qualitatively-derived concepts: Inductive-Deductive pitfalls. In Morse, J. M., Hupcey, J. E., Penrod, J., Spiers, J. A., Pooler, C., & Mitcham, C. (2002). Issues in validity: Behavioral concepts, their derivation and interpretation. International Journal of Qualitative Methods, 1(4). Article 3. Retrieved 15 December, 2002 from http://www.ualberta.ca/~ijqm. Morse, J. M., & Niehaus, L. (2009). Mixed-method design: Principles and procedures. Walnut Creek, CA: Left Coast. Morse, J. M., Niehaus, L., Varnhagen, S., Austin, W., & McIntosh, M. (2008). Qualitative researchers’ conceptualizations of the risks inherent in qualitative interviews (pp. 195-218). In N. Denzin & M. D. Giardina. (Eds.), Qualitative inquiry and the politics of evidence. Walnut Creek, CA: Left Coast.

references  163 

Morse, J. M., & O’Brien, B. (1995). Preserving self: From victim, to patient, to disabled person. Journal of Advanced Nursing, 21, 886-896. DOI:10.1046/j.13652648.1995.21050886.x Morse, J. M., Penrod, J., Kassab, C., & Dellasega, C. (2000). Evaluating the efficiency and effectiveness of approaches to nasogastric tube insertion during trauma care. American Journal of Critical Care, 9 (5) 325-333. Morse, J. M., Solberg, S. M., Neander, W. L., Bottorff, J. L., & Johnson, J. L. (1990). Concepts of caring and caring as a concept. Advances in Nursing Science, 13, 1-14. Morse, J. M., Solberg, S., & Edwards, J. (1993). Caregiver-infant interaction: Comforting the postoperative infant. Scandinavian Journal of Caring Sciences, 7, 105-111. Morse, J. M., Swanson, J., & Kuzel, A. (Eds.). (2001). The nature of qualitative evidence. Thousand Oaks, CA: Sage. Mosack, K.E., & Wendorf, A.R. (2011). Health care provider perspectives on informal supporters’ involvement in HIV care. Qualitative Health Research, 21, 1554-1566. DOI:10.1177/1049732311413783 Moustakas, C. (1994). Phenomenological research methods. Thousand Oaks, CA: Sage. Mukherjee, S. (2010). The emperor of all maladies. New York: Scribner. Munhall, P. (ed). (2012). Nursing research: A qualitative perspective. (5th ed). Sudbury, MA: Jones & Bartlett. Naanyu, V., Sidle, J., Frankel, R., Ayuku, D., Nyandiko, W. M., & Inui, T.S. (2011). Rooting inquiry in tradition: The Health Baraza as a tool for social research in Kenya. Qualitative Health Research, 21, 14-26. DOI:10.1177/1049732310367498 Nilsen, L. L. (2011). Collaborative work by using videoconferencing: Opportunities for learning in daily medical practice . Qualitative Health Research, 21, 1147115. DOI:10.1177/1049732311405683. Noblit G.W., & Hare, R.D. (1988). Meta-ethnography: Synthesizing qualitative studies. Newbury Park, CA: Sage. Olson, L. M., Wahab, S., Thompson, C W., & Durrant, L. (2011). Suicide notes among Native Americans, Hispanics, and Anglos. Qualitative Health Research,. 21, 1484-1494. DOI:10.1177/1049732311412789 Olufowote, J.O. (2011). A dialectical perspective on informed consent to treatment: An examination of radiologists’ dilemmas and negotiations. Qualitative Health Research, 21, 839-852. DOI:10.1177/1049732311402097 Pagett, D. (2008). Qualitative methods in social work. (2nd ed). Thousand Oaks, CA: Sage. Parker, R. (2004). Will cruise ships become old age nursing homes? Retrieved from http://www.futurepundit.com/archives/002424.html Parkes, C. (1998). Facing loss. British Medical Journal, 316(7143), 1521-1524. Parse, R., Coyne, A.B., & Smith, M.J. (1985). Nursing research: Qualitative methods. Bowie, MD: Brady.

164  references

Penrod, J. & Morse, J. M. (1997). Strategies for assessing and fostering hope: The Hope Assessment Guide. Oncology Nurses Forum, 24, 1055-1063. PMID:9243589 Piaget, J. (1954/1999). The construction of reality in the child. London: Routledge. Pitney, W, J. (2009). Qualitative research physical activity and the health professions. Champaign, Il: Human Kinetics. Plagett, D.K. (2008). Qualitative methods in social work research (2nd ed). Thousand Oaks, CA:Sage. Pleschberger, S., Seymour, J. E., Payne, S., Deschepper, R., Onwuteaka-Philipsen, B. D., Rurup, M.E. (2011). Interviews on end-of-life care with older people: Reflections on six European studies. Qualitative Health Research, 21, 15881600. DOI:10.1177/1049732311415286 Pope, C., & Mays, N. (2006). Qualitative research in health care (3rd ed). Malden, MA: Blackwell. Proctor, A., Morse, J. M., & Khonsari, E. S. (1996). Sounds of comfort in the trauma center: How nurses talk to patients in pain. Social Sciences & Medicine, 42, 1669-1680. doi:10.1016/0277-9536(95)00298-7 Rabin, C. R., Simpson, N., Morrow, K., & Pinto, B. (2011). Behavioral and psychosocial program needs of young adult cancer survivors. Qualitative Health Research, 21: 796-806, doi:10.1177/1049732310380060. Rhodes, L. A. (1991). Emptying beds: The work of an emergency psychiatric unit. Berkeley: University of California Press. Rodgers, B., & Knafl, K. (2000). Concept development in nursing. Philadelphia: W.B. Saunders. Rose, D. J. (2011). Captive audience? Strategies for acquiring food in two Detroit neighborhoods. Qualitative Health Research, 21, 642-651. DOI:10.1177/1049732310387159 Rosenbek Minet, L.K., Lønvig, E-M., Henriksen, J.E., & Wagner, L. (2011). The experience of living with diabetes following a self-management program based on motivational interviewing. Qualitative Health Research, 21: 11151126. DOI:10.1177/1049732311405066 Sackett, D. L. (1993). Rules of evidence and clinical recommendations. Canadian Journal of cardiology, 9, 487-489. Sacks, O. (1973). Awakenings. New York: Random House. Sandelowski, M. & Barroso, J. (2003). Creating metasummaries of qualitative findings. Nursing research, 52, 226-233. Sandelowski, M., & Barroso, J. (2007). Handbook for synthesizing qualitative research. Philadelphia, PA: Springer. Selye, H. (1976). Stress in health and disease. Boston: Butterworths. Scharf, M. & Mayseless, O. (2011). Disorganizing experiences in second- and third-generation holocaust survivors. Qualitative Health Research, 21, 15391553. DOI: 10.1177/1049732310393747

references  165 

Sheffer, C.E., Brackman, S. L., Cottoms, N., & Olsen, M. (2011). Understanding the barriers to use of free, proactive telephone counseling for tobacco dependence. Qualitative Health Research, 21: 1075-1085. DOI:10.1177/1049732311404248 Smith, J.S., Flowers. P., & Larkin, M. (2009). Interpretative phenomenological analysis: Theory, methods and research. Los Angeles, CA: Sage. Smithson, J., Sharkey, S., Hewis, E., Jones, R. B., Emmens, T., Ford, T., & Owens, C. (2011). Membership and boundary maintenance on an online self-harm forum. Qualitative Health Research, 21, 1567-1575. DOI:10.1177/1049732311413784 Solberg, S., & Morse, J. M. (1991). The comforting behaviors of caregivers toward distressed post-operative neonates. Issues in Comprehensive Pediatric Nursing, 14(2), 77-92. DOI:10.3109/01460869109009754 Splevins, K.A., Cohen, K., Joseph, S., Murray, C., & Bowley, J. (2010). Vicarious posttraumatic growth among interpreters, Qualitative Health Research, 20(12), 1705-1716. DOI: 10.1177/1049732310377457 Stevens, B., Riahi, S., Cardoso, R., Ballantyne, M., Yamada, J., Beyene, J., Breau, L., Camfield, C., Finley, G. A., Franck, L., Gibbins, S., Howlett, A., McGrath, P. J., McKeever, P., O’Brien, K., & Ohlsson, A. (2011). The influence of context on pain practices in the NICU: Perceptions of health care professionals. Qualitative Health Research, 21, 757-770. DOI:10.1177/1049732311400628 Stewart, K. A., Hess, A., Tracy, S.J., & Goodall, H.L. (2009). Risky research: Investigating the “perils” of ethnography. (pps. 198-216). In Qualitative inquiry and social justice. Ed by N.K. Denzin & M. D. Giardina. Walnut Creek, CA: Left Coast. Stige, B., Malterud, K., & Midtgarden, T. (2009). Toward an agenda for evaluation of qualitative research. Qualitative Health Research, 19, 1504-1516. DOI: 10.1177/1049732309348501 Strauss, A. L.(1987) Qualitative analysis for social scientists. New York: Cambridge University. Streubert Speziale, H.J., & Carpenter, D. R. (2003). Qualitative research in nursing: Advancing the humanistic perspective. (3rd ed). Philadelphia, PA: Lippincott. Strohschein, F. J., Bergman, H., Carnevale, F.S.A., & Loiselle, C. G. (2011). Patient decision making among older individuals with cancer. Qualitative Health Research, 21: 900-92. doi:10.1177/1049732311399778. Sutton, L., & Chapman-Novakofski, K. (2011). Hypoglycemia education needs. Qualitative Health Research, 21, 1220-1228. DOI:10.1177/1049732311402698. Thorne, S., Jensen, L., Kearney, M., Noblit, G., & Sandelowski, M. (2004). Qualitative metasynthesis: Reflections on methodological orientation and ideological agenda. Qualitative Health Research, 14, 1342-1365. DOI:10.1177/1049732304269888 Todres, L. (1998). The qualitative description of human experience: the aesthetic dimension. Qualitative Health Research, 8, 121-127. DOI: 10.1177/104973239800800109

166  references

Todres, L., Galvin, K.T., & Holloway, I. (2009). The humanization of healthcare: A value framework for qualitative research. International Journal of Qualitative Studies and Well-being, 1-10, Article 1. DOI: 10.1080/1748262080264204 Tolich, M. (2004). A critique of current practice: Ten foundational guidelines for autoethnographers. Qualitative Health Research, 20, 1599-1610. DOI: 10.1177/1049732310376076 Tyler, A. (1985). The Accidental Tourist, New York, Knopf. (The film version was released in 1998). Ulin, P.R., Robinson, E.T., & Tolley, E.E. (2005). Qualitative methods in public health: A field guide for applied research. San Francisco, CA: Jossey-Bass. Umenai, T., Wagner, M., Page, L. A., Faundes, A., Rattner, D., Dias, M. A., Tyrrel, M.A., Hotimsky, S., Haneda, K., Onuki, D., Mori, T., Sadamori, T., Fujiwara, M., & Kikuchi, S. (2001). Conference agreement on the definition of humanization and humanized care. International Journal of Gynecology and Obstetrics, 75(Suppl.),1, S3-S4. Uotinen, J. (2011). Senses, bodily knowledge, and autoethnography: unbeknown knowledge from an ICU experience. Qualitative Health Research, 21, 13071315. DOI:10.1177/1049732311413908 van Manen, M. (1990). Researching the lived experience. London, Canada Althouse Press. Varnum, S., Covington, C. Y., Woodbury, R. L., Konstantinos, P., Kangas, L. S., Abdullah, M. S., Pounds, J. G., Smith, R. D., & Zangar, R. C. (2003). Proteomic Characterization of Nipple Aspirate Fluid: Identification of Potential Biomarkers of Breast Cancer. Breast Cancer Research and Treatment, Breast Cancer Research Treatment, 80, 87-97. Verghese A. (2008). Culture Shock: The Patient as Icon, Icon as Patient.” The New England Journal of Medicine, Perspective. New England Journal of Medicine, 359, 2748-51. Wagman, P., Björklund, A., Håkansson, C., Jacobsson, C, & Falkmer, T.(2011). Perceptions of life balance among a working population in Sweden. Qualitative Health Research, 21, 410-418. DOI: 10.1177/1049732310379240 Warr, D. (2004). Stories in the flesh and voices in the head: Reflections on the context and impact of research with disadvantaged populations. Qualitative Health Research 14, 578-587. DOI: 10.1177/1049732303260449 Weerasinghe, M.C. & Fernado, D.N. (2011). Paradox in treatment seeking: An experience from rural Sri Lanka. Qualitative Health Research, 21: 365-372. DOI: 10.1177/1049732310385009 Williams, B. (2001). Response: Including personal reflections might help. British Medical Journal, 323(7311), 514. Wuest, J., & Hodgins, M. (2011). Reflections on methodological approaches and conceptual contributions in a program of caregiving research: Development and testing of Wuest’s Theory of Family Caregiving, Qualitative Health Research, 21, 151-16. DOI:10.1177/1049732310385010 Zborowski, M. (1969). People in pain. San Francisco, CA: Jossey-Bass.

index

A

Bourgealt, I., 46 Bowers, B., 112 Breastfeeding, 59 Brink, E., 101 Byrne, K., 37, 42

Access: for research, 77 Agar, M., 29 Allen, C, 91 Alternative models of evidence, 106-110 compelling, 112 data-less inquiry, 110 forensic designs, 106 logic and common sense, 111 microanalytic causality, 107 trial, N=1 research, 107 Apesoa-Varano, E. C., 38, 44

C Caring: as a concept, 61-62 Carpenter, C., 146 Carter, S., 91 Causality: microanalytic, 107 Certainty criteria, 79-80 Cheek, J., 40 Clandinin, J., 12 Clinical dissemination: difficulties with, 128 solution to, 129 Cobb, S., 123 Cochrane, A. L., 25, 95 Cochrane criteria: demands of, 102 poor fit of, 114 taxonomy, 96 qualitative inquiry and, 97-98 Cochrane Qualitative Research: Methods Group, 99-100

B Barach, P., 106 Barbour, R. S. 81 Beatty, A., 22, 85 Beck, C., 48 Becker, H., 24, 117 Behruzi, R., 53 Benner, P., 108 Beres, M. A., 104 Bergstrom, L., 63 Blow, A. J., 42 Botelho, E. M., 42 Bottorff, J. L., 86 167

Qualitative Health Research Research: Creating a Discipline by Janice M. Morse, 167-172. ©2012 Left Coast Press, Inc. All rights reserved.

168  index

Comfort Talk Register (CTR), 56, 62-63 Community research, 74-75 Compelling evidence, 112-114 developing, 114 Conducting qualitative health research, 69 studying health, 70 Connell, L., 106 Consent, 78-79 Context: of qualitative health research, 72 Cook, J. V., 146 Copeland, D., 37 Corbin, J., 12 Côté, J., 60, 76 Council for Nursing and Anthropology (CONAA), 25 Crabtree, B. F., 146 Cricco-Lizza, R., 39, 44 CTR (see comfort talk register) D Dahlberg, K., 86 Data-less inquiry, 110 Denzin, N. K., 51-52 Dickinson, E., 125 Doig, A. K., 113

F Fazio, A., 36 Field, P. A., 25 Finlay, L., 145 Focus groups, 87-88 Focused ethnography, 85 Forbes, M. A., 119 Forensic designs, 106 G Gelech, J. M., 67 Generalization, 135 Germain, C., 84 Ghose, T., 40 Giorgi, A., 86 Glaser, B. G., 23, 67, 85, 117 Glorich, C., 146 Global Congress for Qualitative Health Research (GCQHR), 133, 142143, 147-151 mission statement, 148 objectives, 149 scope of, 149 Goffman, E., 24, 84, 117, 137 Grbich, C. 145 Green, J., 145 Grounded theory, 23, 85

E Ellis, C., 91 Engel, J. D., 146 Ethical qualitative research: principles of, 90-93 Ethnography, 84-85, 105 Evidence: challenge of, 25-26 Cochrane reviews, 26 models of, 106-110

H Hadders, H., 35, 67 Hall, J., 47 Hammell, K.W., 46, 146 Hansen, E., 145 Hirano, Y., 37, 41 Holloway, I., 145 Hopfer, S., 35, 41 Humanization: definition, 52 Humanizing health care: agenda, 55 as social justice, 52 definition of, 54 dimensions, 54 organization, 147 sensitizing, 65 Howard, A. F., 159

index  169 

I

M

International Institute for Human Understanding, 147 International Institute for QualitativeMethodology, 12, 133, 168 Interventions, 67-68 Interviews: focus group, 87 man on the street, 20 medical story, 19 semi-structured, 20, 88-89 unstructured, 12-13 Irurita, V. F. 127

MacDonald, J-A, 47 Madison, D.S., 91 Man on the street interviews, 20 McHutchion, E., 63, 76 McIntosh, M., 73 Medical story: in interviews, 19 Mercado-Martinez, F.J., 45 Merry, L., 47 Microanalysis, 66 microanalytic causality, 107 Mitcham, C., 86, 116, 120, 128 Mixed methods, 84 emergence of, 27 qualitatively-driven, 89 Mogobe, D. K., 127 Morrow, K.M., 47 Morse, J. M., 25, 56, 59, 60, 63, 68, 76, 80, 82, 86, 90, 91, 97, 99-100, 105, 113, 116, 120, 121, 124, 128, 145 Mosack, K. E., 37 Moustakas, C., 86 Mukherjee, S., 115, 135 Munhall. P., 145, 147

J James, I., 43 Jaye, C., 36 Johnson, J. L., 127 K Kayser-Jones, J., 92 Kelly, K.P., 35, 67 King, K. M. , 127 Korea Institute for Qualitative Health Research, 148 Kravitz, R.L., 97 Kuzel, A., 103, 104 L Laing, A. C., 112 Larner, G., 96, 103 Lau, U., 67 Lazarus, R. S., 123 Leininger, M., 61 Lekas, H., 35, 67 Leventhal, H, 123 Liamputtong Rice, P., 145 Lincoln, Y. S., 81 Lock, M., 84 Logic and commonsense, 111

N Naanyu, V., 48 Niehaus, L., 90 Nilsen, L. L., 38 Noblit, G. W, 100 Nondisclosure, 71 O Observational research, 86-87 Olson, L. M., 38 Olufowote, J. O., 35

170  index

P

R

Pagett, D., 46 Pain: in infants, 60, 76 Parker, R., 57 Parkes, C., 128 Parse, R., 25 Participant action research (PAR), 22 Participants: characteristics of, 70-73 health professionals as, 73 self-as-participant, 79 Perspective: of others, 66 Penrod, J. , 129 Phenomenological research, 86, 105 Piaget, J., 107 Pitney, W. J., 46 Plagett, D. K., 146 Pleschberger, S., 40 Preserving self, 126, 127 Privacy, 72-73 regulations, 77 Pope, C., 145 Proctor, A., 56, 62

Rabin, C. R., 39 Rhodes, L. A. Restraints, 63-63 Rhodes, L. A., 84 Rigor, 81-82 as a base for qualitative, 103 building internally, 103 debate, 134-135 Rim Shim, Kyung, 148 Risk, Research, 90 Risk, 84-90 Rodgers, B., 120 Rose, D. J., 41 Rosenbek Minet, L.K., 36

Q Qualitative description, 124-125 Qualitative Health Research (QHR): access, 77 community, 74-75 context of, 72-73 criticisms of, 80-81 definition, 21 distinct perspective of, 21-22 distinct methods of, 22-23 emergence of, 24-27 observational research, 86-87 pragmatic goals of, 64-68 review criteria, 82-84 support for, 140 uniqueness of, 28 Qualitative researchers: characteristics of, 28-29 disciplines of, 29 preparation of, 140 Qualitatively-derived theories, 126

S Sackett, D. L., 96 Sacks, O., 108 Sandelowski, M., 100 Scharf, M., 43 Scientific concepts, 125-126 Seffer, C. E., 36 Self-as-participant, 79 Semi-structured interviews, 20, 88-89 Smith, J.S., 86 Smithson, J., 37 Social coercion for weaning, 60 Social justice, 52 agenda, 51-52 Solberg, S., 76 Splevins, K. A., 74 Stevens, B., 39, 44 Stewart, K. A., 91 Stige, B., 45 Strauss, A., 23, 67, 85, 117 Streubert Speziale, H. J., 145 Strohschein, F. J., 42 Sutton, L., 39

index  171 

T

V

Theoretical development of articles: lack of, 80-81 premature submission of, 80 Thorne, S., 100 Todres, L., 53 Tolich, M., 91 Trajectories, 66-67 Trial, N=1 Research, 107 Tyler, A. , 125

van Manen, M., 12, 86, 116 Varnum, S., 124 Verghese, A., 28 “Voice”, 65

U Ulin, P.R., 46, 146 Umenai, T., 52 Unstructured interviews, 12-13 Uotinen, J., 37

W Wagman, P., 35, 39 Warr, D., 92 Weerasinghe, M. C., 35 Williams, B., 81 Wuest, J., 48 Z Zborowski, M., 24, 84

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About the author

Where do I fit in the development of qualitative health research? In the mid-1970s, I was happily and frantically going to graduate school at The Pennsylvania State University. I loved it, but, like all students, was terrified that I would run out of money before receiving my degree, so I was taking as many courses as possible in order to complete as quickly as possible. Penn State was a very quantitative school, with many quantitative stars offering courses, so quantitative was the only research paradigm I knew. I was enrolled in transcultural nursing, and that enabled me to dabble in physical anthropology—but not in qualitative inquiry. My master’s thesis was a quantitative disaster, because it would have been much more meaningful if it had a qualitative component as a qualitatively driven mixed-method design. Having moved internationally a couple of times, I was interested in culture shock, and had a notion—a theory?—that the illnesses caused by relocation were not solely due to exposure to new viral strains (as was the explanation at that time), but rather were due to the psychological and physiological stress of culture shock. Hans Selye’s stress theory (1976) was really in vogue at that time, and provided a nice theoretical framework. To do this study I needed a culture shock scale (Dr. George Guthrie, thank you for your help); physical measures (I used blood cortisol and cholesterol; thanks to Dr. J. Mendez and the Noll Laboratory); a selfreport measure of health (provided by the Cornell Medical Index); and a health diary (to be completed monthly). My plan was to collect data from newly arrived graduate students every month for six months. A little much for a master’s thesis? Probably.

173 Qualitative Health Research Research: Creating a Discipline by Janice M. Morse, 173-176. ©2012 Left Coast Press, Inc. All rights reserved.

174  about the author

But my supervisory committee was the biggest stumbling block. In their wisdom, they decided I should control my sample to maximize the stress. I was to recruit students who had arrived in the United States within the past two weeks (students spent the summer in language school in the States, so that disqualified most), who were unsupported in their living arrangements (that is, were single and alone in the United States), and who spoke English as a second language. To prevent the effects of menstruation on the physiological stress measures, my sample was to be entirely male. Of the approximately 850 foreign graduate students who arrived on campus at the end of the summer semester, only ten were eligible for the study and six agreed to be in it. Those six students became so “shocked and paranoid” by week 8 of my study that they were almost too stressed to be in the study. I knew from my own experience and that of my friends that cultural shock was powerful, and I knew that most of the committee’s selection criteria were unnecessary. I did not know enough, however, to argue with my committee; their quantitative value on control almost excluded the entire sample and destroyed my thesis. I learned from that experience to control my own research as much as possible. I tell my students that, if a faculty member makes an “offthe-cuff” suggestion about something of which they are suspicious, they should respond, “Thank you. What a great idea! Let me think about it and talk to you tomorrow.” Then, they should go back the next day and argue their way out of it. Generally the student finds that, when the committee member is alone, he or she will see things the student’s way. In the late 1970s, following my transcultural interests, I moved to the University of Utah to study with Madeleine Leininger. It was there I was introduced to qualitative methods. The doctoral program at that time was heavy on methods. We had our share of quantitative methods, but the large variety of qualitative methods courses was supplemented by a nice list from anthropology. I took all I could—enough courses for a master’s degree in anthropology and doctorates in both nursing and anthropology. Both my dissertations were mixed-method designs, with the fieldwork conducted in Fiji. For the nursing dissertation, I followed an interest in culture and pain, and compared the cultural context of pain behavior exhibited by Fijian and Fiji-Indian women in childbirth (a qualitatively driven, QUAL+quan mixed method design). For my dissertation in anthropology, I explored the cultural effects of infant feeding on infant health (quantitatively-driven, QUAN+qual mixed-method design). By 1981, I had completed five university degrees in six years. My first faculty appointment was at the University of Alberta in Canada, where for ten years I conducted as much research as I could on di-

about the author  175 

verse topics—patient falls, the cultural perception of pain, breastfeeding, even documenting a Cree healer curing psoriasis— while teaching qualitative methods and supervising a host of Master’s thesis students. During this period I started conducting workshops on qualitative methods and published my first qualitative methods book with Peggy Ann Field. These were difficult years, and the problems I had with the medical committee when requesting permission to do my research during this period still bring feelings of dread in the middle of the night. At the end of that decade, I had visitors from Sage, who invited me to start a journal dedicated to qualitative health research. The journal Qualitative Health Research (QHR) emerged under the care of Mitch Allen, who, in those days, was the editor for health journals at Sage Publications. Mitch was very influential in helping me get QHR off the ground—assisting with the formation of the editorial board and developing review criteria, policies, and procedures. In February 1991, we held a Qualitative Health Research conference in West Edmonton Mall, complete with a medieval banquet, to launch the journal. The journal is now in its twentysecond year (Volume 22) and is very healthy: it is published monthly, it recently ranked thirteenth of fifty-eight journals in Health Policy (Thomson Reuters ISI Ranking), and it is now receiving more than 650 submissions per year. It is the editing of this journal, reading so many manuscripts on so many topics, that has solidified my sense of what good qualitative health research should be and my notions of the domain in inquiry. This backstage material provided the impetus for many editorials, and my task next year will be to bring them together in a book—Principles of Qualitative Inquiry. In 1991, I moved to Penn State as a faculty member, chasing National Institutes of Health funding and taking QHR with me. Over the years, the domain of QHR gradually emerged, in part from what was submitted and in part from the response to calls for articles and special issues. I examined what was cited and commonly attended to and what was attended to less frequently, and I considered the areas claimed by competing journals. In 1997, I returned to Edmonton to create the International Institute of Qualitative Methodology (IIQM) at the University of Alberta, supported by Dean Marnie Wood, and funded by an establishment grant in my name from the Alberta Heritage Foundation for Medical Research to develop qualitative inquiry globally. The IIQM sponsored the annual Qualitative Health and Advances in Qualitative Methods research conferences in North America and internationally. In an effort to establish qualitative inquiry as a discipline, we held a lecture and workshop series (“Thinking

176  about the author

Qualitatively”) and trained a generation of qualitative health researchers. Through the IIQM, we developed and supported a multilingual, open access, online journal (International Journal of Qualitative Methods [IJQM]); the journal Qualitative Health Research; a series of monographs within the Qual Press; a postdoctoral and predoctoral training program (Enhancing Qualitative Understanding of Illness Process and Prevention [EQUIPP]); and an internship for international trainees. National and international outreach included linking with 115 universities through hubs at eight international sites, which in turn spawned additional research, centers, conferences, journals, and organizations internationally. In 2007, I decided that my career needed to change; I was afraid of the University of Alberta’s mandatory retirement policy, and I felt that the IIQM was on course and could move along without me. I was unsuccessful in obtaining a research chair in Canada and I needed time to write, so I returned to the United States—to the University of Utah—to write while gazing in awe at the mountains. Where are we today, in 2012? I am still writing, but my career has reached the stage of synthesis. I am writing books as fast as I can, but I am v=a vey terilbe typst. More than anything, I am convinced that the discipline of qualitative health research will continue to develop, become normalized into graduate and undergraduate programs, and is here to stay. Janice Morse