Principles of Global Child Health: Education and Research [1 ed.] 9781610021906, 9781610021890

Citation preview

EDITORS

Danielle Laraque-Arena, MD, FAAP Bonita F. Stanton, MD, FAAP This indispensable resource provides a cohesive, sustainable, and ethical approach to medical education and research that addresses the health needs of children locally and globally. Areas covered include global health education and research efforts and substantive and sustainable approaches aimed at changing the health status of children, their families, and communities through effective models of research and education. Each chapter contains an abstract of the core concept; teaching points; history and context of the topic relating back to the perspective of high-, middle-, and low-income/resourced countries; core principles and competencies; and an environmental scan of the current state with identification of successes and gaps.

Topics include ▶▶ Operating Principles for Engaging in Global Education and Research ▶▶ Domains of Competency for Global Health ▶▶ Educational Models in Global Health Settings ▶▶ Models for Global Health Research

ISBN 978-1-61002-189-0

90000>

Laraque-Arena • Stanton

For other pediatric resources, visit the American Academy of Pediatrics at shop.aap.org.

Principles of Global Child Health: Education and Research

Principles of Global Child Health: Education and Research

Principles of Global Child Health: Education and Research

EDITORS

Danielle Laraque-Arena, MD, FAAP Bonita F. Stanton, MD, FAAP

9 781610 021890

AAP

GCH SPREAD.indd All Pages

8/23/18 10:51 AM

Principles of Global Child Health: Education and Research

EDITORS Danielle Laraque-Arena, MD, FAAP President, The State University of New York Upstate Medical University CEO, Upstate Health System Professor of Pediatrics, Psychiatry and Behavioral Science, and Public Health and Preventive Medicine The State University of New York Upstate Medical University Syracuse, NY Bonita F. Stanton, MD, FAAP Founding Dean, Hackensack Meridian School of Medicine at Seton Hall University President, Academic Enterprise for Hackensack Meridian Health Nutley, NJ

PGCH_ch00_FM_i-xxii.indd 1

8/20/18 7:44 AM

American Academy of Pediatrics Publishing Staff Mary Lou White, Chief Product and Services Officer/SVP, Membership, Marketing, and Publishing Mark Grimes, Vice President, Publishing Eileen Glasstetter, MS, Senior Editor, Professional/Clinical Publishing Theresa Wiener, Production Manager, Clinical and Professional Publications Jason Crase, Manager, Editorial Services Linda Diamond, Manager, Art Direction and Production Linda Smessaert, MSIMC, Senior Marketing Manager, Professional Resources Mary Louise Carr, MBA, Marketing Manager, Clinical Publications Published by the American Academy of Pediatrics 345 Park Blvd Itasca, IL 60143 Telephone: 630/626-6000 Facsimile: 847/434-8000 www.aap.org The American Academy of Pediatrics is an organization of 67,000 primary care pediatricians, pediatric medical subspecialists, and pediatric surgical specialists dedicated to the health, safety, and well-being of infants, children, adolescents, and young adults. The recommendations in this publication do not indicate an exclusive course of treatment or serve as a standard of care. Variations, taking into account individual circumstances, may be appropriate. Statements and opinions expressed are those of the authors and not necessarily those of the American Academy of Pediatrics. Listing of resources does not imply an endorsement by the American Academy of Pediatrics (AAP). The AAP is not responsible for the content of external resources. Information was current at the time of publication. The publishers have made every effort to trace the copyright holders for borrowed materials. If they have inadvertently overlooked any, they will be pleased to make the necessary arrangements at the first opportunity. This publication has been developed by the American Academy of Pediatrics. The contributors are expert authorities in the field of pediatrics. No commercial involvement of any kind has been solicited or accepted in development of the content of this publication. © 2019 American Academy of Pediatrics All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted in any form or by any means—electronic, mechanical, photocopying, recording, or otherwise—without prior written permission from the publisher (locate title at http://ebooks. aappublications.org and click on © Get Permissions; you may also fax the permissions editor at 847/434-8000 or e-mail [email protected]). Printed in the United States of America 9-413/0918     1 2 3 4 5 6 7 8 9 10 MA0869 ISBN: 978-1-61002-189-0 eBook: 978-1-61002-190-6 Library of Congress Control Number: 2017960895

PGCH_ch00_FM_i-xxii.indd 2

8/20/18 7:44 AM

iii

Contributors Errol R. Alden, MD, FAAP President-elect International Pediatric Association

Bronwen J. Anders, MD, FAAP Professor Emerita Center for Community Health University of California, San Diego, School of Medicine San Diego, CA

Elizabeth Asiago-Reddy, MD, MS Assistant Professor of Infectious Disease The State University of New York Upstate Medical University Syracuse, NY

Donald A. Barr, MD, PhD Professor of Pediatrics, and of Education (by courtesy) Stanford University Stanford, CA

Sara K. Berkelhamer, MD, FAAP Associate Professor of Pediatrics Division of Neonatology University at Buffalo, The State University of New York Buffalo, NY

Francois P. Bernier, MD, FRCPC Departments of Medical Genetics and Paediatrics Alberta Children’s Hospital Research Institute University of Calgary Calgary, Alberta, Canada

Zulfiqar A. Bhutta, MBBS, DCH, FRCP, FRCPCH, FCPS, FAAP, PhD Codirector and Director of Research, Centre for Global Child Health, The Hospital for Sick Children Senior Scientist, Child Health Evaluative Sciences, SickKids Research Institute Professor, Dalla Lana School of Public Health and Department of Nutrition, University of Toronto Founding Director, Center of Excellence in Women and Child Health, Aga Khan University Toronto, Ontario, Canada

PGCH_ch00_FM_i-xxii.indd 3

8/20/18 7:44 AM

iv Contributors

Jai K. Das, MBBS, MD, MBA Assistant Professor Division of Women and Child Health Aga Khan University Karachi, Pakistan

Deborah Dewey, PhD, RPsych Professor Departments of Paediatrics and Community Health Sciences University of Calgary Calgary, Alberta, Canada

Elizabeth T. Domachowske, MPH Syracuse, NY

Joseph B. Domachowske, MD, FAAP Professor of Pediatrics Professor of Microbiology and Immunology Director Maternal-Child and Pediatric Health Program Institute for Global Health Department of Pediatrics The State University of New York Upstate Medical University Syracuse, NY

Howard Dubowitz, MD, MS, FAAP Professor of Pediatrics Head, Division of Child Protection; Director, Center for Families Department of Pediatrics University of Maryland School of Medicine Baltimore, MD

Mei Elansary, MD, MPhil Fellow, Division of Developmental Medicine Boston Children’s Hospital Boston, MA

Ruth A. Etzel, MD, PhD, FAAP Director, Office of Children’s Health Protection US Environmental Protection Agency Washington, DC

Ronald D. Garcia, PhD Assistant Dean, Minority Affairs Director, Center of Excellence in Diversity in Medical Education Stanford School of Medicine Stanford, CA

PGCH_ch00_FM_i-xxii.indd 4

8/20/18 7:44 AM

v Contributors

Samantha Hackney Program Manager, Philanthropic Effectiveness Haiti Development Institute at The Boston Foundation Boston, MA

Nichole L. Hodges, PhD Research Scientist Center for Injury Research and Policy Research Institute at Nationwide Children’s Hospital Columbus, OH

Beena D. Kamath-Rayne, MD, MPH, FAAP Associate Professor of Pediatrics Perinatal Institute and Global Child Health Center Cincinnati Children’s Hospital Medical Center Pediatrics, University of Cincinnati College of Medicine Cincinnati, OH

Jonathan D. Klein, MD, MPH, FAAP Professor of Pediatrics University of Illinois at Chicago Chicago, IL

Eveline T. Konje, BSc, MSc Department of Biostatistics and Epidemiology, School of Public Health Catholic University of Health and Allied Sciences, Bugando Mwanza, Tanzania

Mirzada Pasic Kurbasic, MD, MS, FAAP Professor of Pediatrics University of Louisville Louisville, KY

Philip J. Landrigan, MD, MSc, FAAP Professor of Pediatrics and Preventive Medicine Dean for Global Health Arnhold Institute for Global Health Icahn School of Medicine at Mount Sinai New York, NY

Fabienne Laraque, MD, MPH Medical Director Clinical Director of the Opioid Overdose Prevention Program Department of Homeless Services/Department of Social Services New York, NY

PGCH_ch00_FM_i-xxii.indd 5

8/20/18 7:44 AM

vi Contributors

Danielle Laraque-Arena, MD, FAAP President, The State University of New York Upstate Medical University CEO, Upstate Health System Professor of Pediatrics, Psychiatry and Behavioral Science, and Public Health and Preventive Medicine The State University of New York Upstate Medical University Syracuse, NY

Xiaoming Li, PhD Professor and Endowed Chair, Health Promotion, Education, and Behavior Director, South Carolina SmartState Center for Healthcare Quality Arnold School of Public Health University of South Carolina Columbia, SC

Stephen Ludwig, MD, FAAP Professor of Pediatrics Perelman School of Medicine UPENN Senior Director of Medical Education Children’s Hospital of Philadelphia Philadelphia, PA

Mange Manyama, MD, MSc, PhD Assistant Professor of Anatomy in Radiology Weill Cornell Medicine-Qatar Doha, Qatar

Fernando S. Mendoza, MD, MPH, FAAP Professor of Pediatrics, Division of General Pediatrics Stanford University, School of Medicine Stanford, CA

David G. Nichols, MD, MBA, FAAP President and CEO The American Board of Pediatrics Chapel Hill, NC

Pierre-André Noel, JD Executive Director Haiti Development Institute The Boston Foundation Boston, MA

Elias C. Nyanza, BSc, MPH Department of Environmental and Occupational Health, School of Public Health, Catholic University of Health and Allied Sciences, Bugando Mwanza, Tanzania

PGCH_ch00_FM_i-xxii.indd 6

8/20/18 7:44 AM

vii Contributors

Cliff O’Callahan, MD, PhD, FAAP Director of Nurseries and Pediatric Faculty, Middlesex Hospital Family Medicine Residency Associate Professor Pediatrics, University of Connecticut Middletown, CT

Rosemary Ortlieb-Padgett Director, Learning Through Development Office of Global Affairs The State University of New York Albany, NY

Jean William Pape, MD Howard and Carol Holtzmann Professor of Clinical Medicine Center for Global Health, Division of Infectious Diseases, Department of Medicine Weill Cornell Medical College New York, NY Director, Les Centres GHESKIO Port-au-Prince, Haiti

Elizabeth Peacock-Chambers, MD, MS Assistant Professor of Pediatrics University of Massachusetts Medical School–Baystate Springfield, MA

Shan Qiao, PhD Assistant Professor Department of Health Promotion, Education and Behavior Arnold School of Public Health University of South Carolina Columbia, SC

Yaddanapudi Ravindranath, MBBS Georgi Ginopolis Chair for Pediatric Cancer and Hematology Professor of Pediatrics Wayne State University School of Medicine Children’s Hospital of Michigan Detroit, MI

Owen Robinson Executive Director Haiti Cardiac Alliance Burlington, VT

PGCH_ch00_FM_i-xxii.indd 7

8/20/18 7:44 AM

viii Contributors

Vanessa Rouzier, MD Pediatric Infectious Diseases Head of Pediatrics and Nutrition Les Centres GHESKIO Port-au-Prince, Haiti

Syeda Hafsa Shahid, MD Fellow, Pediatric Survivorship Long-term Follow-up Program Memorial Sloan Kettering Cancer Center New York, NY

Renee Sharma, MSc Centre for Global Child Health The Hospital for Sick Children Toronto, Ontario, Canada

Gary A. Smith, MD, DrPH, FAAP Professor of Pediatrics The Ohio State University Director, Center for Injury Research and Policy The Research Institute at Nationwide Children’s Hospital Dimon R. McFerson Endowed Chair in Injury Research Columbus, OH

Bonita F. Stanton, MD, FAAP Founding Dean, Hackensack Meridian School of Medicine at Seton Hall University President, Academic Enterprise for Hackensack Meridian Health Nutley, NJ

Anna M. Stewart-Ibarra, PhD, MPA Assistant Professor Department of Medicine and Department of Public Health and Preventive Medicine The State University of New York Upstate Medical University Syracuse, NY

Omolara Thomas Uwemedimo, MD, MPH, FAAP Assistant Professor of Pediatrics and Occupational Medicine, Epidemiology and Prevention Program Director, GLOhBAL (Global Learning. Optimizing health. Building Alliances Locally.) Cohen Children’s Medical Center of New York New Hyde Park, NY

PGCH_ch00_FM_i-xxii.indd 8

8/20/18 7:44 AM

ix Contributors

Sally Crimmins Villela Associate Vice Chancellor for Global Affairs The State University of New York Albany, NY

Michael K. Visick, MD, FAAP Technical Specialist, Maternal and Newborn Care LDS Charities Salt Lake City, UT

James R. Wilentz, MD, FACC Associate Clinical Professor of Medicine Icahn Mount Sinai School of Medicine New York, NY

Virginia Young, MLS Health Sciences Library The State University of New York Upstate Medical University Syracuse, NY

Barry S. Zuckerman, MD, FAAP Professor and Chair Emeritus of Pediatrics, Boston University School of Medicine Boston Medical Center Professor of Public Health, Boston University School of Public Health Boston, MA

PGCH_ch00_FM_i-xxii.indd 9

8/20/18 7:44 AM

PGCH_ch00_FM_i-xxii.indd 10

8/20/18 7:44 AM

To the memory of my parents, Paul and Marcelle Laraque, and to my husband, Luigi Arena, for his unwavering support of me for more than 40 years. —Danielle Laraque-Arena, MD, FAAP

To the families across the globe who love their children as much as I love mine but may not always have the resources to support and nurture them as I know they would love to do. May we all look forward to the time in the future when every child everywhere will be able to receive optimal support for his or her needs. —Bonita F. Stanton, MD, FAAP

PGCH_ch00_FM_i-xxii.indd 11

8/20/18 7:44 AM

PGCH_ch00_FM_i-xxii.indd 12

8/20/18 7:44 AM

xiii

Contents Preface. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . xvii    Danielle Laraque-Arena, MD, FAAP   Bonita F. Stanton, MD, FAAP

Part 1 Operating Principles for Engaging in Global Education and Research. . . . 1 Chapter 1 Global Child Health Populations: A Community Pediatrics Framework and Relevance to Education and Research. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3   Danielle Laraque-Arena, MD, FAAP    James R. Wilentz, MD, FACC   Owen Robinson Chapter 2 Evolution of Our Understanding of the Concept and Challenges of Global Health Research and Education. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 21    Bonita F. Stanton, MD, FAAP Chapter 3 Positive Strategies in Achieving Health for All Children: An Equity Framework and Its Effect on Research Design and Education . . . . . . . . . . . . . . 43   Renee Sharma, MSc   Jai K. Das, MBBS, MD, MBA    Zulfiqar A. Bhutta, MBBS, DCH, FRCP, FRCPCH, FCPS, FAAP, PhD Chapter 4 Epidemiology and Social Determinants of Global Health as the Basis for Education and Research . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 61   Fabienne Laraque, MD, MPH    Omolara Thomas Uwemedimo, MD, MPH, FAAP Chapter 5 A New Development Matrix for Global Child Health. . . . . . . . . . . . . . . . . . . . . . 81   Danielle Laraque-Arena, MD, FAAP   Syeda Hafsa Shahid, MD

PGCH_ch00_FM_i-xxii.indd 13

8/20/18 7:44 AM

xiv Contents

Part 2: Domains of Competency for Global Health. . . . . . . . . . . . . . . . . . . . . 97 Preface. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 99 Chapter 6 Global Health Administrative Competencies. . . . . . . . . . . . . . . . . . . . . . . . . . . . 103    Cliff O’Callahan, MD, PhD, FAAP Chapter 7 Global Health Education Faculty Competencies. . . . . . . . . . . . . . . . . . . . . . . . . 115   Mirzada Pasic Kurbasic, MD, MS, FAAP Chapter 8 Global Health Research Competencies. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 121    Ruth A. Etzel, MD, PhD, FAAP Chapter 9 Global Health Clinical Competencies . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 133    Joseph B. Domachowske, MD, FAAP    Anna M. Stewart-Ibarra, PhD, MPA    Elizabeth T. Domachowske, MPH    Elizabeth Asiago-Reddy, MD, MS

Part 3: Educational Models in Global Health Settings . . . . . . . . . . . . . . . . . 157 Chapter 10 Purposeful and Mindful Leadership: An Educational Framework for Global Child Health. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 159    Stephen Ludwig, MD, FAAP    David G. Nichols, MD, MBA, FAAP Chapter 11 A New Advocacy Paradigm for Education: The Role of Persistence. . . . . . . . . 169   Bronwen J. Anders, MD, FAAP Chapter 12 Cross-cultural Training of Residents and Medical Students in Global Child Health. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 183   Fernando S. Mendoza, MD, MPH, FAAP    Ronald D. Garcia, PhD    Donald A. Barr, MD, PhD

PGCH_ch00_FM_i-xxii.indd 14

8/20/18 7:44 AM

xv Contents

Chapter 13 The Role of Simulation in Health Education Globally: A Review of the ­Neonatal Resuscitation Program and Helping Babies Breathe. . . . . . . . . . . . . 201   Beena D. Kamath-Rayne, MD, MPH, FAAP    Michael K. Visick, MD, FAAP    Sara K. Berkelhamer, MD, FAAP Chapter 14 Child Development: The Next Global Health Frontier. . . . . . . . . . . . . . . . . . . . 219    Mei Elansary, MD, MPhil    Elizabeth Peacock-Chambers, MD, MS    Barry S. Zuckerman, MD, FAAP

Part 4: Models for Global Health Research. . . . . . . . . . . . . . . . . . . . . . . . . . . . 253 Chapter 15 Environmental Hazards and Global Child Health: The Need for Evidence-Based Advocacy. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 255   Philip J. Landrigan, MD, MSc, FAAP Chapter 16 Implication of a Community-Based Participatory Research Model in a Behavioral Intervention Project in China. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 277    Xiaoming Li, PhD    Shan Qiao, PhD Chapter 17 Ethical Research in Global Child Health. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 299   Deborah Dewey, PhD, RPsych    Eveline T. Konje, BSc, MSc    Elias C. Nyanza, BSc, MPH    Francois P. Bernier, MD, FRCPC    Mange Manyama, MD, MSc, PhD Chapter 18 The GHESKIO Centers for Research in Haiti: An Education and Research Model in Action. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 321   Vanessa Rouzier, MD    Virginia Young, MLS    Jean William Pape, MD Chapter 19 Injury Prevention Research and Global Child Health . . . . . . . . . . . . . . . . . . . . 339   Nichole L. Hodges, PhD    Gary A. Smith, MD, DrPH, FAAP

PGCH_ch00_FM_i-xxii.indd 15

8/20/18 7:44 AM

xvi Contents

Chapter 20 A Global Snapshot of Child Maltreatment and Child Protection. . . . . . . . . . . 359   Howard Dubowitz, MD, MS, FAAP Chapter 21 Developing the Agenda for Global Child Health at the American Academy of Pediatrics. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 381   Jonathan D. Klein, MD, MPH, FAAP    Errol R. Alden, MD, FAAP Chapter 22 Global Health Research: Role of Specialty Care. . . . . . . . . . . . . . . . . . . . . . . . . . 391   Yaddanapudi Ravindranath, MBBS Appendixes. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 413 Appendix A: Faculty Competencies for Global Health. . . . . . . . . . . . . . . . . . . . . . . 415 Appendix B: List of Abbreviations/Organizations. . . . . . . . . . . . . . . . . . . . . . . . . . 425 Appendix C: Glossary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 431 Index . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 443

PGCH_ch00_FM_i-xxii.indd 16

8/20/18 7:44 AM

xvii

Preface Danielle Laraque-Arena, MD, FAAP Bonita F. Stanton, MD, FAAP This book is the culmination of many discussions over the course of years with numerous colleagues and friends. Our goal is to develop and teach a cohesive, sustainable, and ethical approach to medical education and research addressing the health needs of children locally and globally. The book is organized into 4 main areas: core operating principles for engaging in global education and research, competency-based approaches to global health, educational models in global health settings, and case examples demonstrating the application of the principles and attainment of competencies in global health education and research. The book is grounded in the concepts of implementation research, service learning, and lifelong learning. The intended audience includes practicing physicians, residents in training, interdisciplinary health professional students, and faculty in colleges of medicine, nursing, health professions, graduate schools, and public health. It will also be useful to other stakeholders who interface with these disciplines and assist in understanding the framework for action. The field of global child health has emerged from many disciplines. Global child health refers to the health of the world’s children and, therefore, is not bound by geographic borders. The term references not only mortality but also morbidity and wellness data for children. It extends the definition of health as described by the World Health Organization, United Nations Children’s Fund, and the Institute of Medicine, stating that health is not merely the absence of disease but encompasses the domains of child conditions, function, and potential. The focus on attainment of health for all children as an equity proposition underlies an approach to the health for all children. The discussion of health disparities, health equity, and justice are intermingled and are not only relevant but imperative in the discussion of children’s health. Often conceptualized as child health in other countries, more recent applications of the term underscore the importance of beginning locally. Thus, global child health speaks to the health and well-being of children everywhere. Our motivation for assembling this book derives from our observation that most practitioners are ill prepared for careers in global child health despite great interest in global health concerns among students of medicine, nursing, other allied medical fields, behavioral science, and public health. Many are seeking careers in global health. Although several books have been written about clinical practice of global child health, the topic of research and education in global child health is not usually addressed. This book is unique in focusing on the areas of global health education and research efforts. It focuses on substantive and sustainable approaches aimed at changing the health status of children, their families, and communities through effective models of research and education. Each of the 22 chapters is organized in similar fashion. Part 1 addresses the operating principles on which a student or faculty will be invited to reflect. Part 2

PGCH_ch00_FM_i-xxii.indd 17

8/20/18 7:44 AM

xviii Preface

is dedicated to the discussion of administrative, education, research, and clinical competencies. The evolution of the field of global child health has prompted the development of competencies needed to engage in global health endeavors in a more structured fashion. Reflective of this evolution is the formation of the Academic Pediatric Association (APA) Global Health Task Force (www.academic peds.org/leadership/GlobalHealthTaskForce.cfm), American Academy of Pediatrics Global Child Health and Life Support, and the Consortium of Universities for Global Health, as examples, as well as publication of training competencies by the APA Global Health Task Force and broad discussions of the core principles in engagement in global health activities.1,2 The APA competencies are used in this book to guide the discussion of engagement in research and education and are detailed within the universal competency domains of Values/Ethics, Roles/ Responsibilities, Communication, Team Building and Teamwork, and Special Considerations. Part 3 focuses on educational models in global health settings illustrating the core competencies and principles. Part 4 illustrates models of global health research consistent with the framework outlined by the book. Each chapter is organized as follows: • An abstract detailing how the chapter focus links back to the core concepts • Teaching points • The history and context of the topic being addressed relating back to the perspective of high-, middle-, and low-income/resourced countries (see Appendix C) • Current best practices that integrate the framework of core principles and competencies • An environmental scan of where we are now with identification of successes and gaps • A brief reference list The 5 operating principles grounding the discussion of this book are1 1. The concept of the use of population-specific and local data, epidemiology of diseases in children, their origins, and their relevance to specific educational and research efforts will be described. This aspect will be developed in several chapters on community pediatrics, preventive medicine, an equity framework, and biological, environmental, and social determinants of health. A chapter will also outline a developmental matrix for global child health. 2. The concept of polarization; that is, identification of obstacles or threats to sustainability of educational and research efforts will be detailed as well as the competition for those resources. Chapters on working with the existing educational and research infrastructures of participating countries will be examined. 3. The concept of evidence-based, scientifically rigorous, ethically sound, positive strategies that are teachable, replicable, scalable, and sustainable will be addressed by core chapters on educational and research models currently in existence.

PGCH_ch00_FM_i-xxii.indd 18

8/20/18 7:44 AM

xix Preface

4. The concept of persistence, an essential element of genuine advocacy, will be described to illustrate the efforts needed to sustain educational and research collaborations. 5. The concept of partnership, bidirectional modalities in education and research that are essential to respectful and sustainable efforts that build the infrastructure for education and research in disadvantaged localities, will be detailed in specific examples. While this volume is expansive in scope, it is not intended to cover all aspects of child well-being and threats thereof. Rather, we intend that the frameworks presented will be applicable to the vast array of opportunities and threats to global child well-being confronted daily by practitioners. Thus, for example, we do not exhaustively examine the myriad oncologic disorders or infectious diseases but, rather, present a broad overview with a few specific, illustrative disorders. Likewise, child trauma and neglect are major threats to global child well-being that present in countless settings. A major issue confronting pediatricians and other child health specialists worldwide is child trauma as a consequence of acts of violence, whether physical, emotional, or both. After much deliberation, we have elected to focus on violence against children in the household, rather than in the broader context of local, national, or international strife, because the pediatrician and other child health specialists traditionally have been centrally involved in the prevention of and treatment for this type of childhood violence and, therefore, a book addressing global child health would be incomplete without addressing such a central issue in child health. But child maltreatment in the context of armed conflict cannot and should not be ignored by those interested in global child health. Long recognizing the effect of war on children to be a critically important but neglected consequence of armed conflict, the UN General Assembly commissioned a major study by Grac’a Machel on this topic in 1994. The report was completed in 1996.3 In response to the report, in 1996 the UN General Assembly established the Special Representative for Children and Armed Conflict. In 1999 the UN Security Council placed the issue of children affected by war on the council’s agenda, calling out the following 6 specific “grave violations” to be avoided worldwide even during war4: 1. Recruitment and use of children as soldiers 2. Killing or maiming of children 3. Sexual violence against children 4. Attacks against schools or hospitals 5. Abduction of children 6. Denial of humanitarian access for children Over the 20 years since this document was written and embraced, armed conflict globally has not decreased. To the contrary, a comprehensive 2015 analysis of global armed conflict conducted by UNHCR, the UN Refugee Agency, reported that 65.3 million people were displaced at the end of 2015 (1 of every 113 persons worldwide) compared with 59.5 million at the end of 2014, exceeding 60 million persons

PGCH_ch00_FM_i-xxii.indd 19

8/20/18 7:44 AM

xx Preface

displaced for the first time in the history of the agency. Children comprised more than half of the refugees, and many were separated from their parents or traveling alone. As the numbers of refugees increase, the willingness of other nations to accept them declines, leaving an ever-increasing portion unable to find asylum other than in temporary, makeshift camps, often with inadequate resources.5 Community violence, including that which is the result of penetrating trauma from firearms and stabbings, is a major cause of morbidity and mortality for children and adolescents. The toll of injuries and deaths from small arms mirrors that of declared armed conflicts. For example, the cumulative death toll from the Vietnam War was 58,000. In 2015 the total number of firearm-related nonfatal injuries and deaths in the United States for all ages was 84,997 and 36,252, respectively. That is, every 2 years we lose in civilian lives the number of deaths resulting from one of the worst wars in recent US history. In the 0- to 24-year age group, the number of nonfatal and fatal injuries in 2015 due to firearms was 35,388 and 7,326, respectively.6 Our decision not to include a specific chapter addressing armed conflict and small arms injuries and deaths and global child health reflects our belief that to do so would not do justice to this critically important topic for all pediatricians. Rather, we believe that an entire textbook should be devoted to the educational and research needs of children affected by global armed conflict and community violence. The writing of this book could not have been accomplished without the diligent contribution of the many chapter authors from around the world. A special acknowledgment is given to Ruth Etzel, MD, PhD, FAAP, whose vision for teaching and research guided the early development of the book. It is our hope that this book will provide a new paradigm for global child health education and research. The paradigm crosswalks education and research endeavors to service the building of infrastructure. The models presented exemplify educational and research efforts that embed service needs in their processes of teaching and innovation. The establishment of sound and sustainable education and research programs with the potential to contribute to the betterment of the status of children globally is the goal.

PGCH_ch00_FM_i-xxii.indd 20

8/20/18 7:44 AM

xxi Preface

References 1. Laraque D. Global child health: reaching the tipping point for all children. Acad Pediatr. 2011; 11(3):226–233 2. Etzel R, Kurbasic M, Staton D, et al; Academic Pediatric Association Global Health Task Force. Faculty Competencies for Global Health. Reston, VA: Academic Pediatric Association; 2014. https://academicpeds.org/NewsIncludesOct2014/pdf/11GlobalHealthTaskForceJune2014.pdf. Accessed July 18, 2018 3. Machel G. Impact of Armed Conflict on Children: Report of Grac’a Machel. New York, NY: United Nations; 1996. https://www.unicef.org/graca/a51-306_en.pdf. Accessed July 18, 2018 4. Office of the Special Representative of the Secretary-General for Children and Armed Conflict. The Six Grave Violations Against Children During Armed Conflict: The Legal Foundation. Working Paper No. 1. New York, NY: United Nations; 2013. https://childrenandarmedconflict.un.org/effectsof-conflict/six-grave-violations. Published October 2009. Updated November 2013. Accessed July 18, 2018 5. United Nations High Commission for Refugees. Global Trends: Forced Displacement in 2015. Geneva, Switzerland: United Nations High Commission for Refugees; 2016. https://s3.amazonaws. com/unhcrsharedmedia/2016/2016-06-20-global-trends/2016-06-14-Global-Trends-2015.pdf. Published June 20, 2016. Accessed July 18, 2018 6. Centers for Disease Control and Prevention. Injury prevention & control. Welcome to WISQARS. https://www.cdc.gov/injury/wisqars/index.html. Updated February 5, 2018. Accessed July 18, 2018

PGCH_ch00_FM_i-xxii.indd 21

8/20/18 7:44 AM

PGCH_ch00_FM_i-xxii.indd 22

8/20/18 7:44 AM

PART

1 Operating Principles for Engaging in Global Education and Research

PGCH_ch01_001-020.indd 1

8/20/18 7:50 AM

PGCH_ch01_001-020.indd 2

8/20/18 7:50 AM

3

CHAPTER 1

Global Child Health Populations: A Community Pediatrics Framework and Relevance to Education and Research Danielle Laraque-Arena, MD, FAAP James R. Wilentz, MD, FACC Owen Robinson

abstract This chapter reviews global health education and research within a community-oriented framework emphasizing social accountability of these 2 academic spheres. The rationale for this approach is the understanding that in low-, lower-middle–, upper-middle–, and high-income/ resource countries throughout the world, research should be guided by translational steps that ultimately lead to improvement in the care of individuals and contribute to the health of populations locally and globally. Additionally, professional education, profoundly affected by the available environment for clinical training, must display alignment with a valid and socially responsible clinical venue; for example, one based on ethical practice, responsiveness to health needs,1 and broad epidemiological principles of community pediatrics.

Teaching Points 1 The concepts of community pediatrics and community-oriented primary care

are relevant to improving the health of populations in low-, lower-­middle–, upper-middle–, and high-income/resource countries because the social determinants of health play a pivotal role in health outcomes.

2 Training in global health settings integrates the concepts of transformative

education, service learning, and other competency-based models of education.

3 The framework for translational research and the conduct of research in varying global health settings is based on the principles of community ­pediatrics.

4 Real case examples in which research and education are conducted within a community-oriented health care delivery setting assist trainees in understanding the broader principles of social accountability and the core principles of interactions in global health settings.

PGCH_ch01_001-020.indd 3

8/20/18 7:50 AM

4 Part 1: Operating Principles for Engaging in Global Education and Research

Background/History/Context

Definition of Community Pediatrics American Academy of Pediatrics policy statements over the past 3 decades have defined community pediatrics (see Appendix C) as the practice of “promoting and integrating the positive social, cultural, and environmental influences on children’s health as well as addressing potential negative effects that deter optimal child health and development within a community.”2 The components of community pediatrics include a perspective that expands the clinician’s view from that of one patient to a community of patients; a recognition of the importance of family, educational, social, cultural, spiritual, economic, environmental, and political forces on the health and functioning of individuals; and a synthesis of clinical practice and public health principles. Together, these principles underscore the importance of an epidemiological approach to understanding the key causes of morbidity and mortality and supporting key health-promoting activities, and a commitment to collaborate across the spectrum of partners in the community invested in quality services that are equitably distributed to the population.2 There is a recognition in the concepts of community pediatrics of the pivotal role of the social determinants of health that mandates that the roles of clinicians include not only the traditional practice of medicine but expand to include partnerships that leverage the collective influence of various social sectors to improve health outcomes.

Definition of Community-Oriented Primary Care A related concept to community pediatrics is that of community-oriented primary care (see Appendix C)—the integrated practice of primary care and community medicine.3 Community-oriented primary care encompasses many of the principles of community pediatrics and has its origins in a multitude of approaches to ­community-based care, as illustrated by the Chinese “barefoot doctor movement” (see Appendix C) and many others well described by Tollman.4 The community-based efforts described in community-oriented primary care are aimed at improving the health of the population. Other uses of this model include experimental approaches in Beijing Medical College and Pholela, South Africa,5–7 in the 1920s and 1930s and the Khanna study in the 1950s8 and the Narangwal study in 1960,9,10 both in the Punjab region of India. These studies examined the effect of community-wide interventions on the health of populations. The perspectives of each of these studies is relevant to our discussions of education and research in global settings, with one approach emphasizing research as a tool to evaluate primary community action to improve health and the other as a research experiment focused on examining the determinants of health status. These 2 perspectives of community-oriented primary care are reflective of the continued tension between the need for an action agenda to improve health and the demands of research to provide new knowledge that may or may not be immediately applicable or generalizable. In the examples in this book, these tensions and the concept of community pediatrics will be

PGCH_ch01_001-020.indd 4

8/20/18 7:50 AM

5 Chapter 1: Global Child Health Populations: A Community Pediatrics Framework

further illustrated and discussed in response to the need for sustainable results and ethical interactions when engaging in educational and research endeavors throughout the world, regardless of overall income or resource status, especially when attempting to address the urgent needs of underserved ­communities.

Necessary Components and Theories in Support of Community Pediatrics In describing the fields of community pediatrics and community-oriented primary care in the 21st century, a number of concepts need further mention and specification. These include terms such as integration, interprofessional, team based, service learning, competency based, and transformative (see Appendix C) when considering education and learning. DeWitt11 comments that “the greatest challenge we face today in medical education is how to establish a conceptual framework for conveying the context of community pediatrics and issues related to child health equity and social justice to practicing pediatricians and pediatricians in training.” In the research world, terms such as community-based participatory research, community research, implementation, and operational research emerge as attempts to center research activities in a framework of service. Fields of study such as neuroscience have incorporated service learning and advocacy throughout undergraduate curriculum. As discussed by Fox, the basis for such inclusion has been to “introduce the relevance of connecting with other disciplines and educating our college and surrounding communities about the importance of engaging in scientific discussion and discovery.”12 This approach is felt to strengthen the interdisciplinary nature of the neuroscience field and is instructive for our discussion of community pediatrics as a framework with the mission of “leadership and service for the common good.”12 Although this chapter cannot review all of these concepts in depth, a brief overview is helpful, synchronous with the 5 core operating principles outlined in the Preface and the universal competency domains of Values/Ethics, Roles/Responsibilities, Communication, Team Building and Teamwork, and Special Considerations.13,14 Subsequent chapters in the book will expand on many of these key concepts; in addition, select terms are defined in the Glossary and Abbreviations are listed in Appendixes at the end of the manual.

Integration The concept of integration is embedded in much of the literature of primary care. At its best, community pediatrics integrates the concepts of public health and primary care. The 2012 Institute of Medicine report, Primary Care and Public Health: Exploring Integration to Improve Population Health, includes a series of definitions, approaches, and best-case examples of integration. In the report, integration is defined as the linkage of programs and activities to promote overall efficiency and effectiveness and achieve gains in population health.15 The degree of integration is depicted along a spectrum: isolation, mutual awareness, cooperation, collaboration, partnership, merger. Community pediatrics, which is interdisciplinary, provides an example of the need for integration of different systems and perspectives. It also presumes that health care is but one component of overall

PGCH_ch01_001-020.indd 5

8/20/18 7:50 AM

6 Part 1: Operating Principles for Engaging in Global Education and Research

health and well-being and, thus, must be part of the larger societal context and the health system infrastructure components that should, at minimum, be used to collaborate or partner to achieve health and well-being goals. This perspective is consistent with that of the World Health Organization, which defines health as “physical, mental and social well-being, not merely the absence of disease or infirmity.”16 Other, more recent considerations reflective of the need for varying perspectives include a focus of community pediatrics on the natural and built environment, toxic exposures (eg, mold, heavy metals, fluorocarbons), adequate housing, access to safe play areas, adequate transportation, and urban planning in general. The training of child health professionals must then encompass a broad focus in the curriculum on public health and primary care.

Competency-Based Education Some authors have argued that an educational model that is competency based must relate to competencies that first and foremost relate to the health needs and health systems needs of individuals and populations. Such a competency-based approach to the curriculum is interrelated with team-based learning (see Appendix C) essential to the community pediatrics framework.1,17,18 From these core principles emerges the development of competencies linked to outcomes that can be evaluated through rigorous educational assessment and lead to responsive, dynamic, and relevant curricula. Disaggregation of data to better understand the needs of subgroups in the population is a component of this data-driven approach. Also integrated in this process are the principles of a humanistic practitioner who possesses not just the cognitive domain of learning but also the affective domain. The affective domain relates to the compassion and integrity of the educational process.

Translational Research and Community Effect A cornerstone of the National Institutes of Health research strategy, translational research (see Appendix C), involves a research continuum of 5 translation strategies (T0–T4) meant to accelerate the adoption of the progress and innovations of basic science research.19 Strategy T0 consists of research in animal models and involves basic scientific discovery. When this research is promising, it traverses to human research, called T1 research, and consists of physiologic and pharmacokinetic studies in humans and proof-of-concept and phase 1 clinical trials. The original translational research models defined 2 and 3 phases of research, respectively.20,21 Research phases T2 and T3 are clinical studies in larger populations that lead to US Food and Drug Administration approval of a treatment (drug or device). Later modifications extended the model to a T4 phase that addresses the effect on health practice, outcomes research, and health services research involving dissemination, communication, and implementation, as well as its extension to population health and global health (Figure 1-1).22 The bidirectionality or continuous/circular nature of this process must be stressed. We can envision the start of this process, for example, with urgent global health problems, such as HIV, malaria, toxic exposures, and mental illness, leading to the formulation of

PGCH_ch01_001-020.indd 6

8/20/18 7:50 AM

7 Chapter 1: Global Child Health Populations: A Community Pediatrics Framework

Clinical and Translational Research Spectrum Basic Scientific Discovery (TO)

T1 T2 Translation Clinical Translation Implications to Humans Insights to Patients for Practice

Examples include: • Human Physiology • First in Humans (FIH) (healthy volunteers) • Proof of Concept (POC) • Phase 1 Clinical Trials

Examples include: • Phase 2 Clinical Trials • Phase 3 Clinical Trials

T3 Translation to Practice

Implications for Population Health

Examples include: • Phase 4 Clinical Trials • Health Services Research • Dissemination • Communication • Implementation • Clinical Outcomes Research

T4 Translation to Population Health

Improved Global Health

Examples include: • Population-level Outcome studies • Social Determinants of Health

• Community-Based Participatory Research (CBPR) • Cost Effectiveness/Comparative Effectiveness • Health Disparities • Public Policy

Control of Experimental Conditions

• Observational Studies • Personalized Medicine • Guideline Development • Systematic Reviews/Meta-Analyses

Sample Size

Translational Activity

Figure 1-1. Clinical and Translational Research Spectrum Reproduced with permission from Harvard Catalyst. Clinical and translational research spectrum. https://catalyst.harvard.edu/pathfinder. Accessed June 18, 2018. Based on Sung NS, Crowley WF Jr, Genel M, et al. Central challenges facing the national clinical research enterprise. JAMA. 2003;289(10):1278–1287; Westfall JM, Mold J, Fagnan L. Practice-based research—”Blue Highways” on the NIH roadmap. JAMA. 2007;297(4):403–406; Szilagyi PG. Translational research and pediatrics. Acad Pediatr. 2009;9(2):71–80.

novel scientific, clinical, educational, and policy queries anywhere in the translational research pathway. The expansion of research in gene sequencing, molecular mechanisms, and epigenetics has opened many new avenues of investigation necessitating examination of the environmental factors related to the origin and transmission of disease or disease risk. These advances now necessitate increased communication among different disciplines to systematically share ideas in the pathogenesis and prevention of ill health. This new perspective must also lead to a fundamentally different approach to using the talents of the global health community, without bias related to level of income or industrialization. Education and research in this framework is consistent with the core principles of community pediatrics. The concepts of service learning and social accountability in medical education and research in low-, lower-middle–, higher-middle–, and high-income countries can be transformative.1 Service learning is defined as an educational approach that places equal weight on formal instruction and the opportunity to serve in the community, thereby providing a progressive, relevant learning experience. The Accreditation Council for Graduate Medical Education defines 6 competency domains for trainees: patient care and procedural skills, medical knowledge, ­practice-based learning and improvement, interpersonal and communication skills, professionalism, and systems-based practice (see Appendix C).23 Two of

PGCH_ch01_001-020.indd 7

8/20/18 7:50 AM

8 Part 1: Operating Principles for Engaging in Global Education and Research

these competencies are most relevant to our discussion of service learning and the community pediatrics framework of global health education. The first is the ability to demonstrate interpersonal and communication skills that are effective in exchanging information and partnering with patients, families, and others. The second is the ability “to demonstrate an awareness of and responsiveness to the larger context and system of health care and the ability to effectively call on system resources to provide care that is of optimal value.”23 Gefter et al demonstrated in their study of the Stanford Youth Diabetes Coaches Program that service learning can be a tool to effectively teach these competencies.24 They comment that service learning can increase the learner’s “understanding of the communities they serve, and imparting values such as social consciousness.”24 The concept of social consciousness and social accountability of teaching is a premise of competency-based educational models grounded on health needs and, therefore, critical to assess if the experience for learners in local and global settings supports the acquisition of these skills. The results of the Stanford study using a service-learning approach was that residents reported perceived enhanced ability to affect the health of the community and opportunity to practice their communication skills, improved their ability to communicate with teens, and increased their intention to use action plans, a self-management support skill and goal-­setting tool, with patients. This study is relevant to our discussion of tools within community pediatrics that are applicable in local and global settings and can lead to informative, formative, and transformative levels of training essential in the development of leadership attributes and of change agents necessary for improvement of health in the global community.23

Interprofessional Education The Sustainable Development Goals (SDGs) (see Appendix C) of the United Nations comprise a plan for action that encompasses improvement of the lives of individuals and the planet and supporting prosperity.25 The eradication of poverty, including extreme poverty, is noted as the greatest global challenge and essential to achieving sustainable development. There are 17 SDGs and 169 targets. These goals build on the Millennium Development Goals (MDGs) and seek to complete what the MDGs did not. The focus is on human rights, gender equality, and empowerment of women and girls. The SDGs integrate and balance the 3 dimensions, that is, economic, social, and environment. Sustainable Development Goal 3 is to “ensure healthy lives and promote well-being for all at all ages.” There are 13 subsections within this goal. These targets are synchronous with the developmental matrix of global child health (see Chapter 5). Achieving these SDGs is believed to require the development of collaborative teams predicated on implementing transformative interprofessional education (see Appendix C) in a nonhierarchical fashion26 with dissolution of professional silos, maximal utilization of the power of information technology, simulation and testing, distance learning, collaborative connectivity, and data analytics. While the 20th century saw the evolution of the fields of microbiology, immunology, genetics, biochemistry, cell biology, and other basic sciences, as

PGCH_ch01_001-020.indd 8

8/20/18 7:50 AM

9 Chapter 1: Global Child Health Populations: A Community Pediatrics Framework

well as the eradication of some infectious diseases such as smallpox, new diseases emerged that rapidly grew to global proportions (eg, HIV/AIDS) and existing diseases (eg, influenza, cholera) expanded in part because of globalization. The rapid increase in urbanization has led to urban decay, lack of economic development, and concentration of poverty. Noncommunicable, chronic conditions and behavioral health conditions have become part of the spectrum of disease globally, and yet our paradigm for delivery of care has not changed. The ability to provide precise medicine for specific individuals and to improve population health demand a reformulation of team-based science and health care. Translational research has led to new fields of implementation research. The United States has been attempting a national health care transformation that aims to provide universal access; comprehensive, patient and family-centered care; lower cost; decreased hospitalization balanced by expanded ambulatory and home-based services; and scaling up of public health evidence-based interventions aimed at universal prevention.27, 28 These discussions have underscored the need for interprofessional education. Interprofessional education has been defined as a situation in which “two or more professions learn with, from and about each other to improve collaboration and quality of health care.”29,30 The term can reference a work environment as well as an academic environment. The Association of American Medical Colleges considers interprofessional education a strategic priority, and other associations have echoed this prioritization of team-based interprofessional practice in improving health outcomes and reducing medical errors. In 2010 the Academic Pediatric Association established a Global Health Task Force to facilitate communication and collaboration of diverse pediatric academic societies and groups to advance global child health.14 That task force noted the lack of defined faculty competencies for pediatric faculty who are engaged in teaching and practice.1 Subsequently, the task force developed the 5 competency domains discussed earlier, inclusive of the domain of Team Building and Teamwork, specifically, as it relates to interactions in a host country. Described further in Part 2 Preface and Chapter 7, the Team Building and Teamwork domain is seen as relevant to universal competencies as well as those for research and education. Finally, the education of trainees based on these new concepts must involve new curricular content, joint training, joint work, joint planning, and criteria for students of different programs that are responsive to the needs of distinct populations (eg, linguistic competence, cultural humility). The assessment of these interprofessional trainees likely will entail different evaluation modules.

Importance of Cultural Context and Ethnography Cultural context and ethnography include several domains, including epistemology, or the study of knowledge. In approaching community pediatrics and global health from a cultural perspective, we can define emic knowledge, which is of, relating to, or involving analysis of cultural phenomena from the perspective of one who participates in the culture being studied; noted in local

PGCH_ch01_001-020.indd 9

8/20/18 7:50 AM

10 Part 1: Operating Principles for Engaging in Global Education and Research

cultures, the people have authority, the insider, native, or indigenous view reflecting parts of ourselves. By contrast, etic knowledge refers to analysis of cultural phenomena from the perspective of one who does not participate in the culture being studied; this external perspective is typically that of the scientist. The distinction and validity of these 2 perspectives in approaching the health of persons and communities is rarely acknowledged in our training. The principles of this book put forth that reflecting on these 2 very distinct and complementary perspectives and bringing respect to those perspectives is essential to ethical approaches, competent care, and patient- and family-centric approaches to health care. Integrating this perspective alongside interprofessional training in a diverse world is critical to addressing health globally. Health literacy, the role of linguistic and cultural competence and humility, then becomes central to the education of health professionals, allowing full integration into all aspects of health. These concepts are directly applicable to the curricula changes needed by our medical schools, nursing schools, schools of public health, and health professions. Grounding curricula development in a competency-based model, beginning with the health and cultural needs of populations and health systems, will change the scientific questions being asked in medicine, the partners in health care delivery, the definitions of health outcomes, and the methods of evaluation. Grounding what we do in education and research in a culturally valid framework will establish a necessary, respectful stance in health care delivery.

Best Practices Two case examples are used in this section to illustrate how readers can apply a community pediatrics framework and the related concepts described previously to specific health issues. The 2 health issues chosen are injury prevention and treatment of congenital heart disease (CHD). The first case example describes the community-based response to high rates of injury in Central Harlem, NY, in the 1980s and 1990s; the second relates to the high rates of untreated CHD in Port-au-Prince, Haiti. Both examples integrate the community pediatrics framework, with its basic principles in the context of development towards sustainable, effective interventions evaluated by the best data available in a realworld setting.

Case Study 1: Central Harlem, NY, United States Issue Definition

Injury remains one of the leading causes of morbidity and mortality for children and adults, so focus on the environment and opportunities for primary prevention of injuries is critical and should be integrated into any approach to community planning and land-use policies that address safety planning. These concepts are, thus, in the domain of community pediatrics. In Central Harlem, NY, in the early 1980s, a group of pediatric surgeons, pediatricians, epidemiolo-

PGCH_ch01_001-020.indd 10

8/20/18 7:50 AM

11 Chapter 1: Global Child Health Populations: A Community Pediatrics Framework

Community Concern

Environmental Change

Evaluation

Awareness Physical Environment Specific Programs

Coalitions

Epidemiologic Data

Social Environment

Outcome Data

Figure 1-2. Data-Based Model for Change Reproduced with permission from Laraque D, Barlow B, Durkin M, Heagarty M. Injury prevention in an urban setting: challenges and successes. Bull N Y Acad Med. 1995;72(1):16–30.

gists, and other health care professionals partnered alongside parents to address the problem of the lack of safe places for children to live and play.31–34 Obtaining ­population-based injury rates for the targeted population was an essential first step. These data were then teamed with the activism of parents who had identified that Central Harlem, at that time, lacked safe playgrounds and organized recreational activities (eg, had not had a Little League for baseball in more than 30 years) and had unsafe streets where children played and were injured. The coupling of injury data and parent activism led to the model of intervention framework depicted in Figure 1-2.34

Proposed Solution

The interventions developed by the Harlem Hospital Injury Prevention Program were created by a partnership between the hospital and community leadership and were community-wide. The intervention consisted of school- and communitybased traffic safety education, construction of new playgrounds, bicycle safety clinics and helmet distribution, and a range of recreational and artistic activities. During the intervention period 25 new playgrounds were built in Central Harlem parks and schools. Interventions were comprehensive, guided by injury prevention principles and described in detail in numerous publications.33–36 Critical to the community-based intervention was the determination to evaluate the effectiveness of this broad approach.

PGCH_ch01_001-020.indd 11

8/20/18 7:50 AM

12 Part 1: Operating Principles for Engaging in Global Education and Research

Proof of Concept

The evaluation described in the article by Durkin et al36 over a 13-year period (1983–1995) established pre-intervention (1983–1988) and post-intervention rates of severe pediatric injuries in those younger than 17 years resulting in hospitalization and/or death in northern Manhattan linked to census counts to compute incidences. The crudely computed rate ratios of the 2 periods were compared. In addition, Poisson regression was used to quantify and test for changes in incidences controlling for variability in annual injury incidence. The comprehensive intervention showed that after adjusting for annual trends, pedestrian injuries declined among schoolchildren by 45% (adjusted rate ratio .55, 95% CI, .38-.79). This model eventually grew into a national program for injury prevention, retaining the core concepts of the original intervention (see www.injuryfree.org) and the elements are listed as follows37: A: Analyze the data. B: Build a coalition. C: Communicate the injury problem. D: Develop an intervention. E: Evaluate the programs. It should be noted that program evaluation is not the end. The results should yield new questions, new interventions, and analyses providing a continuous improvement framework.

Case Study 2: Port-au-Prince, Haiti Issue Definition Background In 2010, on January 12 at 4:53 pm, a magnitude 7.0 earthquake shook the area of the western portion of Port-au-Prince, the capital and population center of Haiti, the poorest nation in the Western Hemisphere. Death toll estimates ranged from between 49,000 and 86,00038 to the more frequently quoted figure of 220,000.39 Amid this disaster, the toll of CHD among the infants in the babies’ tent and the numbers of adult patients with congestive heart failure, cor pulmonale (often due to tuberculosis), and rheumatic valvular sequelae seen in the adult wing of the hospital quickly became evident.

Scope of Issue From the point of view of cardiac care for pediatric patients, there is little or no extant data on CHD. Available sources are World Health Organization and Pan American Health Organization statistics, as well as statistics from the Haitian Ministry of Public Health and Population. These capture lots of data about maternal health and infant and childhood mortality and specific diseases such as malaria and tuberculosis, as well as classic infectious disease statistics such as diarrheal disease and cholera, but they do not address CHD. Very large databases reveal CHD occurs in approximately 1% of all live births in the United States.40 There is no direct information from published data or data from the Ministry of Public Health and Population in Haiti. One Caribbean publication

PGCH_ch01_001-020.indd 12

8/20/18 7:50 AM

13 Chapter 1: Global Child Health Populations: A Community Pediatrics Framework

from Guadeloupe cites a 0.6% rate of CHD found among live births.41 However, there is tremendous variability in the reported rates of CHD overall, ranging from 4 to 5 per 1,000 live births to a high of 12 to 14 per 1,000 live births, with some reporting much higher. This variability has been attributed to the type of reporting in various studies. Some studies rely on large populations where the denominator is huge and may miss significant numbers of CHD diagnoses due to insufficient screening. On the other hand, studies that rely on referrals to tertiary centers from highly trained pediatricians where echocardiography is routinely done may bias to a high number of CHD cases found per the number of births due to the intensity of the screening.42 With these caveats, given the population (10,317,000) and birth rate of Haiti (264,600) in 2013,43 one would predict a prevalence of CHD among children of 11,890, by analogy with the figures of Marelli et al from the health system of Canada in 2007.44 Complicating the problem, Haiti had only 14 cardiologists in the country at the time of the disaster, of whom none were pediatric cardiologists; there were no surgeons, interventionists, or catheterization laboratory facilities.

Proposed Solution

Discussions between an organized group of volunteer physicians and Partners in Health (PIH; a nongovernmental agency working in the disaster area) led to the formation of a proposal to take on the preexisting PIH CHD Right to Health Care program and form a new entity. Existing surgical groups working in Haiti and Haitian cardiologists formed the Haiti Cardiac Alliance (HCA).45,46 The HCA was established as a US tax-exempt charitable organization. The HCA detailed the following 5 goals: 1. Provide dignified cardiac care and intervention or surgery for Haitian children identified with significant CHD. a.  This should be in the first instance in country, but b. Provisions must be in place for transfer to facilities out of country capable of dealing with complex cases at an acceptable risk (so-called safety valve). 2. Organize and carry out screening clinics in recognized locations to identify children with CHD who would benefit from treatment. Ensure follow-up for postoperative patients and those awaiting surgery or intervention at these sites. 3. Develop a national cardiac database that could be used by every practitioner and clinic countrywide to identify children in need of diagnosis, treatment, and follow-up of their cardiac disease. 4. Form an alliance with the disparate nongovernmental organizations doing pediatric cardiac work in-country as well as with the Haitian doctors and hospitals involved. 5. Support and encourage formation of training programs and individual training opportunities for Haitian health professionals wishing to become skilled in pediatric cardiac care, including pediatric cardiologists, surgeons, and interventionists.

PGCH_ch01_001-020.indd 13

8/20/18 7:50 AM

14 Part 1: Operating Principles for Engaging in Global Education and Research

Table 1-1. Pediatrica Cardiac Diagnostic, Therapeutic, and Surgical Procedures Performed From 2013 to 2016 Diagnostic Procedures

Surgery/ Intervention

Haiti/Abroad

2013–2014

215

32

12/20

2014–2015

393

67

24/43

2015–2016

680

82

33/49

Year (July–June)

a

Fewer than 10% of patients seen were out of the pediatric age and were between 18 and 30 years of age.

Proof of Concept

Since the founding of HCA in 2013, the previously listed goals have been addressed with considerable success. In terms of the first goal, diagnosis and treatment of CHD, the number of diagnostic procedures and interventions (including surgery) and the country where these procedures were conducted are summarized in Table 1-1. Notably, this vast undertaking has been accomplished with a very low mortality rate. There were 7 deaths among the 181 children treated operatively or with intervention, representing a 3.9% mortality rate. This compares favorably with a raw 4.1% mortality rate overall for 2000, 2003, and 2006 of all children undergoing cardiac surgery in a large US population-based study of CHD surgery.47 Of these deaths, 3 were post-discharge and noncardiac in nature, including gastritis, respiratory, and household accident, underlining the complexity of outpatient management and importance of careful follow-up. Since the inception of HCA a total of 490 children have been enrolled on the waiting list. Of those enrolled, 181, or more than one-third (37%), have had surgical or interventional correction, but 77 (16%) succumbed while still waiting for surgery, and 232 (47%) are still on the waiting list. More is needed. From the financial viewpoint, the cost of these procedures has come down from $5,000 to $7,000 to $2,700 per child. This decrease in cost is largely due to organizing the procedures into cohorts in in-country sessions. While still staggeringly out of range considering the per capita gross national income and the government’s minuscule spending on health care in general, it is a step forward toward rendering this care potentially affordable. To achieve the second goal, screening clinics, HCA and its partners began conducting fly-in diagnostic missions at a total of 6 sites around Haiti; these included, as cornerstones, major regional hospitals such as St Damien Pediatric Hospital in the capital and Hôpital Universitaire de Mirebalais just outside Portau-Prince. Haitian cardiologists working in the private sector contribute referrals as well as their expertise in screening echocardiograms. At these screening clinics, HCA doctors work alongside Haitian doctors and medical personnel who are learning and participating in care. The patients referred come from all 10 of Haiti’s departments and span a wide range of ages and socioeconomic situations. The clinics are largely free of charge, although in some cases, private cardiologists

PGCH_ch01_001-020.indd 14

8/20/18 7:50 AM

15 Chapter 1: Global Child Health Populations: A Community Pediatrics Framework

have charged for their echocardiographic services and this charge has been offset, in large part, by donated funds. The development of a national cardiac database, the third goal, has been an iterative process. Building on an existing network of clinics that had relied primarily on ad hoc e-mail and telephone referrals, a program of informing these clinics and practitioners of the creation of the database was put in place and reinforced on an ongoing basis. Initial explorations with classic database solutions using existing software, such as FileMaker Pro, or open-source electronic health records were felt to be too resource intensive for available budget and staffing. Ultimately, the system was developed using the simplest platforms available. 1. Individual patient folders were created and populated with information in a secure online file-hosting cloud account, where all relevant documentation was stored in pdf and other file formats. 2. A multi-tabbed spreadsheet containing the most up-to-date version of the patient waiting list and follow-up information was also stored and made available to referring partners in a shared online cloud file. 3. Echocardiographic imaging was ported to a reliable and very rapid viewing platform, with a license donated by the company that allows hospitals and other clinical partners to review echocardiographic videos for each patient. Multiple echocardiographs taken over time were all stored in one folder, allowing comparisons for pre- and post-procedure function. The platforms chosen had the advantage of being easily accessible to all partners via Web browser or smartphone application (app), being nearly free of cost to HCA, and allowing for secure management of viewing permissions on a folderby-folder basis. However, as the number of patients being managed has grown from several dozen to more than one thousand, the limitations of this ad hoc system have also become apparent: any change in a patient’s status requires manual updates throughout the system, and elements such as appointment scheduling are not well-supported. For these reasons, HCA is beginning the second phase of transitioning to a customized electronic health record platform that will integrate traditional patient record keeping with the unique triaging and surgical matching functions that are a hallmark of HCA activities. The HCA has had the opportunity to discuss and present this database to the Ministry of Public Health and Population in Haiti and has received agreement in principle that this will become the model for patient flow in cardiac care throughout the country. The fourth goal, the formation of an alliance with other partners who share the work of providing pediatric cardiac care in Haiti, was a truly primary goal. Without this, it would not have been possible to achieve any of the other goals. The HCA started with PIH as its parent and continues with PIH as a staunch supporter and as one of the sites for screening clinics and surgeries (Hôpital Universitaire de Mirebalais). As HCA was forming, it forged a close working relationship with Gift of Life International, which had begun cardiac surgeries in a small plastic surgery center in Port-au-Prince. This relationship continues as one of the main partnerships. There is a strong working relationship with 2 of the

PGCH_ch01_001-020.indd 15

8/20/18 7:50 AM

16 Part 1: Operating Principles for Engaging in Global Education and Research

busiest private cardiologists in Haiti, who have given of their time and effort in the clinical arena, performing screening echocardiograms of the children, and in the field, working with HCA to organize the screening clinics and the mission as a whole. In addition, HCA has had the incalculable help of the St Damien Pediatric Hospital; Open Hearts for Haiti; International Children’s Heart Foundation, which has supported surgical and screening teams; Watsi, which has provided generous funding for logistics and transport of patients; and Kay Mackenson Clinic, which has provided anticoagulation follow-up for many of the patients. Health City Cayman Islands, University Hospital of Martinique, and US centers, including Maine Medical Center, Upstate Golisano Children’s Hospital (State University of New York in Syracuse), Jackson Memorial Hospital (Miami), and many others, have provided a safety valve for those patients whose cases have been too complex to manage in country. Finally, there has been incredible participation by surgical and postoperative care teams from centers including Akron Children’s Hospital, Miller Children’s & Women’s Hospital (Long Beach, CA), and Children’s Hospital at Montefiore (Bronx, NY). The fifth goal, forming training programs and supporting individual trainees, has had some successes but is still struggling. While serving the purpose of observerships, the screening clinics and some surgical treatments have not resulted in a specific didactic program for those residents wishing to specialize in pediatric cardiac care or for the specialized training of pediatric cardiac surgeons, interventionists, and perioperative teams. Still, there are some tangible accomplishments in training. Funds have been secured for an opportunity for specialty training in pediatric cardiology for one of the most promising graduates of the St Damien program, and HCA is actively exploring funding and training opportunities with academic partners outside of Haiti as well as in country. Telemedicine will play a large role in this, but an important portion will continue to be hands-on. With only 14 adult and no pediatric cardiologists, and no cardiac surgeons or interventionists in this country of 10,000,000 people, this is an urgent need. As a postscript, one can imagine that funding for an effort of this complexity is difficult from the outset and requires a constant effort. Over the past 3 years, there has been continual work to maintain the current funding level for continued operation of the program, leaving little time to map a broader plane. The realities of the situation on the ground, with many children at peril if nothing is done, are balanced by having to continually attend to the necessity of providing day-to-day care and the stark fact that, over the long haul, time spent in creating the training component is fundamental and is the only way to sustain efforts. The program will never be self-sustaining if this is not accomplished. The HCA is hopeful that over the coming years, progress will be made to a state where the operational aspects are ensured and further funding and partnership opportunities can be assembled for the training of the Haitian teams, which must ultimately take this job over.

PGCH_ch01_001-020.indd 16

8/20/18 7:50 AM

17 Chapter 1: Global Child Health Populations: A Community Pediatrics Framework

An Environmental Scan and Research and Education Gaps An environmental scan of the status of community pediatrics and communityoriented primary care as a framework for global child health educational and research endeavors yields mixed results. A search of the published literature does reveal emergence of basic principles to guide engagement in global health at many universities, but a sustainable and uniformly agreed-on framework has yet to be articulated. The number of cited articles under the search term “community oriented primary care” exceeds 350; for “community pediatrics,” it exceeds 12,000. The competencies for faculty and the targets of education—the learners— lack clear and consistent definition. Also lacking is the evaluation of whether application of those principles leads to the desired outcomes of sustainable, improved health status for children and child populations globally. Disaggregation of data to specifically measure those outcomes and development of more robust education metrics are needed.

References 1. Frenk J, Chen L, Bhutta ZA, et al. Health professionals for a new century: transforming education to strengthen health systems in an interdependent world. Lancet. 2010;376(9756):1923–1958 2. American Academy of Pediatrics Council on Community Pediatrics. Community pediatrics: navigating the intersection of medicine, public health, and social determinants of children’s health. Pediatrics. 2013;131(3):623–628. Reaffirmed October 2016 3. Abramson JH. Application of epidemiology in community oriented primary care. Public Health Rep. 1984;99(5):437–442 4. Tollman S. Community oriented primary care: origins, evolution, applications. Soc Sci Med. 1991;32(6):633–642 5. Chen CC, Bunge FM. Medicine in Rural China: A Personal Account. Berkeley, CA: University of California Press; 1989 6. Seipp C, ed. Health Care for the Community: Selected Papers of Dr. John B. Grant. Baltimore, MD: The Johns Hopkins University Press; 1963 7. Kark SL, Kark E, Abramson JH. Commentary: in search of innovative approaches to international health. Am J Public Health. 1993;83(11):1533–1536 8. Wyon JB, Gordon JE. The Khanna Study: Population Problems in the Rural Punjab. Cambridge, MA: Harvard University Press; 1971 9. Taylor CE, Sarma RS, Parker RL, et al. Child and Maternal Health Services in Rural India: The Narangwal Experiment. Vol 1: Integrated Nutrition and Health Care (English). A World Bank Research Publication. Baltimore, MD: The Johns Hopkins University Press; 1983. http:// documents.worldbank.org/curated/en/329551468756314643/Integrated-nutrition-and-health-care. Accessed June 18, 2018 10. Kielmann AA, Taylor CE, DeSweemer C, et al. Child and Maternal Health Services in Rural India: The Narangwal Experiment. Vol 2: Integrated Family Planning and Health Care (English). A World Bank Research Publication. Baltimore, MD: The Johns Hopkins University Press; 1983. http://documents.worldbank.org/curated/en/767491468752718694/Integrated-family-planningand-health-care. Accessed June 18, 2018 11. DeWitt TG. The application of social and adult learning theory to training in community pediatrics, social justice, and child advocacy. Pediatrics. 2003;112(suppl 3):755–757 12. Fox CM. Developing the next generation of civic-minded neuroscience scholars: incorporating service learning and advocacy throughout a neuroscience program. J Undergrad Neurosci Educ. 2015;14(1):A23–A28

PGCH_ch01_001-020.indd 17

8/20/18 7:50 AM

18 Part 1: Operating Principles for Engaging in Global Education and Research

13. Laraque D. Global child health: reaching the tipping point for all children. Acad Pediatr. 2011;11(3):226–233 14. Etzel R, Kurbasic M, Staton D, et al. Faculty Competencies for Global Health. Reston, VA: Academic Pediatric Association; 2014. https://academicpeds.org/NewsIncludesOct2014/ pdf/11GlobalHealthTaskForceJune2014.pdf. Accessed June 18, 2018 15. Institute of Medicine. Primary Care and Public Health: Exploring Integration to Improve Population Health. Washington DC: The National Academies Press; 2012. http://www. nationalacademies.org/hmd/Reports/2012/Primary-Care-and-Public-Health.aspx. Accessed July 5, 2018 16. Breslow L. A quantitative approach to the World Health Organization definition of health: physical, mental and social well-being. Int J Epidemiol. 1972;1(4):347–355 17. Frenk J, Hunter DJ, Lapp I. A renewed vision for higher education in public health. Am J Public Health. 2015;105(suppl 1):S109–S113 18. Epstein RM, Hundert EM. Defining and assessing professional competence. JAMA. 2002;287(2):226–235 19. Zerhouni EA. Translational and clinical science—time for a new vision. N Engl J Med. 2005;353(15):1621–1623 20. Sung NS, Crowley WF Jr, Genel M, et al. Central challenges facing the national clinical research enterprise. JAMA. 2003;289(10):1278–1287 21. Westfall JM, Mold J, Fagnan L. Practice-based research—“Blue Highways” on the NIH roadmap. JAMA. 2007;297(4):403–406 22. Khoury MJ, Gwinn M, Ioannidis JP. The emergence of translational epidemiology: from scientific discovery to population health impact. Am J Epidemiol. 2010;172(5):517–524 23. Accreditation Council for Graduate Medical Education. ACGME Common Program Requirements. Section IV.A.5. Educational Program. ACGME competencies. (effective: July 1, 2017). http://www.acgme.org/Portals/0/PFAssets/ProgramRequirements/CPRs_2017-07-01.pdf. Accessed June 18, 2018 24. Gefter L, Merrell SB, Rosas LG, Morioka-Douglas N, Rodriguez E. Service-based learning for residents: a success for communities and medical education. Fam Med. 2015;47(10):803–806 25. United Nations. Transforming our world: the 2030 agenda for sustainable development. https://sustainabledevelopment.un.org/post2015/transformingourworld. Accessed June 18, 2018 26. Meleis AI. Interprofessional education: a summary of reports and barriers to recommendation. J Nurs Scholarsh. 2016;48(1):106–112 27. Shaw FE, Asomugha CN, Conway PH, Rein AS. The Patient Protection and Affordable Care Act: opportunities for prevention and public health. Lancet. 2014;384(9937):75–82 28. US Government Printing Office. The Patient Protection and Affordable Care Act (2010). https://www.gpo.gov/fdsys/pkg/BILLS-111hr3590enr/pdf/BILLS-111hr3590enr.pdf. Accessed June 29, 2018 29. Blue AV, Mitcham M, Smith T, Raymond J, Greenberg R. Changing the future of health professions: embedding interprofessional education within an academic health center. Acad Med. 2010;85(8);1290–1295 30. Centre for the Advancement of Interprofessional Education. Welcome to CAIPE. https://www. caipe.org. Accessed June 18, 2018 31. Davidson LL, Durkin MS, O’Connor P, Barlow B, Heagarty MC. The epidemiology of severe injuries to children in northern Manhattan: methods and incidence rates. Paediatr Perinat Epidemiol. 1992;6(2):153–165 32. Davidson LL, Durkin MS, Kuhn L, O’Connor P, Barlow B, Heagarty M. The impact of the Safe Kids/Healthy Neighborhoods Injury Prevention Program in Harlem, 1988 through 1991. Am J Public Health. 1994;84(4):580–586 33. Laraque D, Barlow B, Davidson L, Welborn C. The Central Harlem playground injury prevention project: a model for change. Am J Public Health. 1994;84(10):1691–1692 34. Laraque D, Barlow B, Durkin M, Heagarty M. Injury prevention in an urban setting: challenges and successes. Bull N Y Acad Med. 1995;72(1):16–30

PGCH_ch01_001-020.indd 18

8/20/18 7:50 AM

19 Chapter 1: Global Child Health Populations: A Community Pediatrics Framework

35. Brown-Peterside P, Laraque D. A community research model: a challenge to public health. Am J Public Health. 1997;87(9):1563–1564 36. Durkin MS, Laraque D, Lubman I, Barlow B. Epidemiology and prevention of traffic injuries to urban children and adolescents. Pediatrics. 1999;103(6):e74 37. Pressley JC, Barlow B, Durkin M, Jacko SA, Dominguez DR, Johnson L. A national program for injury prevention in children and adolescents: the Injury Free Coalition for Kids. J Urban Health. 2005;82(3):389–402 38. Doocy S, Cherewick M, Kirsch T. Mortality following the Haitian earthquake of 2010: a stratified cluster survey. Popul Health Metr. 2013;11(1):5 39. Marking third anniversary of earthquake, Ban calls for sustained efforts in Haiti. UN News Web site. https://news.un.org/en/story/2013/01/429742-marking-third-anniversary-earthquake-bancalls-sustained-efforts-haiti. Published January 11, 2013. Accessed June 18, 2018 40. Reller MD, Strickland MJ, Riehle-Colarusso T, Mahle WT, Correa A. Prevalence of congenital heart defects in metropolitan Atlanta, 1998–2005. J Pediatr. 2008;153(6):807–813 41. Cerboni P, Robillard PY, Hulsey TC, Sibille G, Ngyuen J. Congenital heart disease diagnosed in Guadeloupe. Bull Pan Am Health Organ. 1993;27(2):151–153 42. Hoffman JI, Kaplan S. The incidence of congenital heart disease. J Am Coll Cardiol. 2002;39(12):1890–1900 43. Haiti: WHO statistical profile. http://www.who.int/gho/countries/hti.pdf?ua51. Updated January 2015. Accessed June 18, 2018 44. Marelli AJ, Mackie AS, Ionescu-Ittu R, Rahme E, Pilote L. Congenital heart disease in the general population: changing prevalence and age distribution. Circulation. 2007;115(2):163–172 45. Haiti Cardiac Alliance. http://www.haiticardiac.org. Accessed June 18, 2018 46. Robinson O, Kwan GF, Romain J-L, Crapanzano M, Wilentz JR. A national coordinated cardiac surgery registry in Haiti: the Haiti cardiac alliance experience. Lancet Glob Health. 2016;4(S1):s31 47. Marelli A, Gauvreau K, Landzberg M, Jenkins K. Sex differences in mortality in children undergoing congenital heart disease surgery: a United States population-based study. Circulation. 2010;122(11 suppl):S234–S240

PGCH_ch01_001-020.indd 19

8/20/18 7:50 AM

PGCH_ch01_001-020.indd 20

8/20/18 7:50 AM

21

CHAPTER 2

Evolution of Our Understanding of the Concept and Challenges of Global Health Research and Education Bonita F. Stanton, MD, FAAP

abstract As our understanding of the interdependence of the world’s nations has evolved, greater attention and scrutiny have been focused on the goals of improved national and international health and the processes for achieving these outcomes. The rationales for action in support of health within a country, within a region, and across the globe have changed over the last half century, as has our understanding of the consequences of these approaches. This chapter reviews the evolution over the course of the 20th and 21st centuries of our understanding of international and global health and how this evolution has been reflected in and changed the training of the medical workforce. The chapter describes the emergence of multiple forces and agencies aligned toward the goal of a global perspective on health and well-being with resources and training reflective of this overarching vision. The chapter concludes with a discussion of the critical components of continued progress toward realization of global health, especially as they relate to evidence-based training and research and deployment of the global medical workforce.

PGCH_ch02_021-042.indd 21

8/9/18 7:45 AM

22 Part 1: Operating Principles for Engaging in Global Education and Research

Teaching Points 1 A global perspective on the determinants of health and well-being is a new phenomenon.

2 Although international training opportunities should be widely available for aspiring physicians and health workers regardless of country of origin, these opportunities should not result in the loss of the trained physician to his or her native country.

3 Explicit expectations as to the goals of international health rotations must be clearly articulated for visiting physicians/students and their home institutions and nations, and the host institution and nation.

4 The provision of training and resources to emerging nations (defined herein

as a middle-income country that has achieved industrial capacity and is on the path to becoming an industrialized high-income nation) increases the likelihood of trained physicians productively remaining in their native countries, thereby contributing to the health of its people and to global health.

5 Interagency and global collaboration with explicit target goals and measurable discrete outcomes facilitates the continued enhancement of global health.

Background/History/Context

Until the 20th Century International health assistance and education among nations has existed for centuries in the context of colonial development and/or religious, mission-based activity. The turn of the 20th century witnessed the emergence of several organizations (including the Pan American Sanitary Bureau, the Office International d’Hygiène Publique, the Rockefeller Foundation, and the League of Red Cross Societies) concerned with health and well-being across national boundaries. However, it was not until the aftermath of World War I that a multinational organization with the stated goal of international health and well-being was formed: the League of Nations Health Organization (LNHO).1,2 Like its parent organization, the League of Nations,3 the LNHO enjoyed a broad mission (global health), but the mandate was severely underfunded. The LNHO was dependent on (and, therefore, its perspectives shaped by) the preponderance of European and American experts in the field, although the United States was not a member of the LNHO or the League of Nations. The LNHO enjoyed some significant accomplishments, particularly in Asia, and clearly articulated the imperative of social and economic development as a foundation for health equity. As the League of Nations was the precursor to the United Nations (UN), so the LNHO was the predecessor to the World Health Organization (WHO). Both the UN and WHO were formed in 1945, in the aftermath of World War II. Joining the UN in its efforts to reconstruct vast areas of the world, the International Bank for Reconstruction and Development, now known

PGCH_ch02_021-042.indd 22

8/9/18 7:45 AM

23 Chapter 2: Evolution of the Concept and Challenges of Global Health Research and Education

as the World Bank, was formed in 1946. In addition to loans for physical reconstruction to European nations, the World Bank provided recovering nations large loans for power and transportation development. The dominant economic view at that time was that economic growth, requiring large investments in power and transportation, was central to development.4 Over the 701 years since it was first formed, the World Bank has emerged as a major leader of globalization with increasing dominance in health and education. Along with the World Bank, the stated purpose of the other prime UN financial organization, the International Monetary Fund (IMF), is to elevate living standards in countries across the globe, although the approaches of the organizations differs.5 The World Bank functions as a development organization whose primary goal is to reduce poverty in low- and middle-income countries, while the IMF is a cooperative organization that exists to stabilize exchange rates and focus on other macroeconomic issues. The IMF offers monetary advice and gives short- and medium-term loans if there are no other monetary sources for the country; the loans may contain many “conditions” designed to address macroeconomic issues. In general, World Bank loans are long term at very low interest rates.5 While not the subject of this chapter, it is important to note that controversies regarding the World Bank and IMF center on the approaches of these agencies in formulating policies and their governance structure. The concerns revolve around the social and economic effect on the countries seeking assistance from these international agencies.6,7 As physicians and other health professionals get more involved in global health they will need to collaborate with attorneys, sociologists, economists, and others with a better understanding of and ability to influence global policies to improve health in all countries, big or small, low, middle, or high income.

Emergence of the United States in International Health The aftermath of World War II was a time of great transition for all nations, including the United States. While the United States recognized its moral imperative to assume a major role in the reconstruction of Europe and Asia in the postwar period, there was little in the form of a preexisting robust international framework to guide efforts with respect to health—and particularly health of those nations that were not the focus of the reconstruction efforts. The United States was actively engaged in the UN, WHO, and World Bank, as well as in its own postwar effort to educate its former soldiers and build its economy. Thus, it was not until 15 years after the end of World War II that the US Congress, with the urging of then-President John F. Kennedy, passed the Foreign Assistance Act of 1961, which reorganized US foreign assistance programs, separating military and nonmilitary aid. For the latter role, Congress mandated the establishment of the US Agency for International Development (USAID). The legislation includes the following explanation: “The Congress finds that the efforts of developing countries to build and maintain the social and economic institutions necessary to achieve self-sustaining growth and to provide opportunities to improve the

PGCH_ch02_021-042.indd 23

8/9/18 7:45 AM

24 Part 1: Operating Principles for Engaging in Global Education and Research

quality of life for their people depend primarily upon successfully marshalling their own economic and human resources. The Congress recognizes that the magnitude of these efforts exceeds the resources of developing countries and therefore accepts that there will be a longterm need for wealthy countries to contribute additional resources for development purposes. The United States should take the lead in concert with other nations to mobilize such resources from public and private sources.”8 Although, arguably, the initial efforts by the United States to directly assist the development of emerging nations (see Appendix C for the term emerging market)9,10 were made outside of a cohesive developmental framework, the formal establishment of a nonmilitary foreign nation assistance program with an explicit focus on health was an important step in the history of US foreign policy. High priority was placed on strengthening relationships between the United States and low- and middle-income countries. Much of the initial training was performed on-site in the low- and middle-income countries. A strong emphasis was placed on maternal and child health, with a particular focus on health education.11,12 The significance of this action more than a half century ago is reflected in the continued role that USAID plays globally today. Over time, the US assistance programs retained this strategy of direct training of physicians and medical personnel within their own countries but also included increasing numbers of short-term trainings in the United States, with a particular emphasis on maternal and child health.11 The US-based training component, funded by USAID, WHO, and some private foundations, had very modest beginnings. “Each year from 30 to 50 graduate professional workers in maternal and child health…come to the United States…to learn more about practicing their respective disciplines or to acquire additional academic knowledge which will be useful to them in their own lands.”11(p588) For example, in a 19-month period from April 1970 to November 1971, the US Maternal and Child Health Bureau training program hosted 45 long-term (6 weeks to 2 years) participants and 31 short-term participants from Australia, Brazil, Chile, Colombia, Ghana, India, Liberia, New Zealand, Nicaragua, Norway, Panama, Philippines, Poland, Sierra Leone, Thailand, Vietnam, and Yugoslavia. It was felt that trainees coming to the United States benefited from scientific studies and research that would not be available to them in their own countries. Therefore, programs were instituted to increase the availability of these opportunities for training abroad.11 As a result, during the 1960s and 1970s, the numbers of trainees from other countries and the duration of their US-based training dramatically increased. During the 1960s and 1970s a series of legislative actions greatly facilitated the entrance of international medical graduates (IMGs) into the United States on exchange visitor visas, which could be converted to immigrant visas without leaving the country. By the mid-1970s, IMGs had become an essential part of the

PGCH_ch02_021-042.indd 24

8/9/18 7:45 AM

25 Chapter 2: Evolution of the Concept and Challenges of Global Health Research and Education

graduate medical education (GME) system, filling one-third of the GME positions (peaking at 19,220 trainees). Moreover, more and more IMGs elected to remain in the United States after training, accounting for one-fifth of the US physician workforce and exceeding one-quarter in 9 states.13 An analysis of IMGs serving as interns and residents in 1963 and 1964 revealed that 8 years later, approximately 70% remained in the United States.14,15 In the face of growing concerns that too many IMGs were training and remaining in the United States, Title VI of the Health Professions Educational Assistance Act of 1976 imposed several restrictions, including the Visa Qualifying Examination as a prerequisite for the application and the need to leave the country for 2 years prior to applying for a change in visa status.13 These measures greatly reduced the number of IMGs entering the nation, with only 25% of applicants passing the Visa Qualifying Examination, resulting in a mean loss of 1,000 IMGs in residency positions annually.13 However, as before, among those entering the United States for training, most remained permanently in the country as practitioners.16 The total number of IMGs (excluding Canadian medical graduates) increased by 97% from 1981 to 2001, representing 24% of all physicians in the United States. However, consistent with the vision that prompted the creation of USAID, there existed a nucleus of influential individuals who recognized the importance of a global perspective in public health and public health research, as well as the role that the United States should assume in creating a network of global researchers. As early as the mid-1960s, members of the US Congress, including Representative John Fogarty, called for the creation of an institute that could “…bring into being at Bethesda a great international center for research in biology and medicine and dedicated to international cooperation and collaboration in the interests of the health of mankind.”17 In 1968, President Lyndon Johnson established the John E. Fogarty International Center for Advanced Study in the Health Sciences (FIC) at the National Institutes of Health (NIH). Since that time, the FIC has trained more than 5,000 scientists from more than 100 nations worldwide, many of whom have remained in their native country and have become national leaders. Still, many of these scientists were unable to find a footing in their home country in research and either left the research arena or emigrated in search of a nation whose resources allowed them to utilize their newfound research skills.18

Reassessing the Purpose and Consequences of International Medical Graduate Training Over the last several decades, numerous articles have been published reflecting attempts to understand the intended practice of training programs bringing IMGs to the United States and other high-income countries from low- and middle-income countries. Some authors have argued, consistent in a general sense with the historical development of the US-based international training programs discussed previously, that the origin of the training program in the United States

PGCH_ch02_021-042.indd 25

8/9/18 7:45 AM

26 Part 1: Operating Principles for Engaging in Global Education and Research

was to serve as an international training program,16 not as a means of bringing talent to the United States permanently. However, others have argued that the GME program and its relationship to IMGs has been that of “gap filling,” primarily for medically underserved areas.19 Perhaps consistent with this notion of gap filling, some analyses have indicated that IMGs are less likely than their US medical graduate counterparts as a whole to be involved in medical administration, teaching, and research (arguably more “sought-after” positions) and, correspondingly, more likely to be involved in direct patient care.20 Of note, despite the many advantages that the United States and other nations have gained from their IMG workforce, regardless of country of origin of the IMG, analyses conducted in the 1970s indicated that IMGs faced differential outcomes and opportunities in the United States based on their country of origin. Specifically, IMGs from high-­ income nations were more likely to be placed in university-affiliated hospitals, while those from low- to middle-income nations were more likely to be placed in nonaffiliated hospitals and in less-competitive specialties.21,22 This analysis of workforce distribution does not take into consideration the important role of US underrepresented and minority physicians in serving underserved populations. A more complex discussion of the global health care workforce that focuses on underserved US and global populations is needed to arrive at an agreed-on global perspective of how to meet the needs of all countries. Beginning in 193323 through 2015,24 there has been a steady stream of analyses conducted in the United States regarding projected physician needs. Although variable in approach and conclusions,25 a large number have predicted overall or selected looming physician shortages, and even those predicting overall surpluses have predicted shortages in primary care physicians. (There are many reasons for the wide differences in predicted excesses or shortfalls based on these studies besides absolute variations in “real numbers.” A main driver has been the wide variation in methodology to make these assessments, at least in large part because of the lack of a consistent US approach to analyzing and projecting the physician workforce.)26 Of importance in terms of understanding the role of IMG training in the United States (and perhaps other high-income countries), impending surpluses or shortfalls appear not to have been the drivers of any policy decision about IMGs. The reason for the lack of continuity between projected surpluses and deficiencies in the number of physicians in the United States and policies regarding IMGs is not totally clear because concerns were raised about the increasing US dependence on IMGs and measures to restrict or at least control the numbers of IMGs were proposed but not generally followed.27 Apart from the US Health Professions Educational Assistance Act (described earlier in this chapter) and subsequent visa requirement modifications, IMGs appear not to have been a primary focus of most health care workforce analyses conducted over the last 75 years. Instead, results from these workforce analyses have affected the number of US medical students being trained. For example, in 1959, the Bane Report contained alarming predictions of an impending physician shortage in the United States,28 which led to the doubling of US medical school size in the 1960s through the Health Professions Educational Assistance Act of 1963. Likewise, the recom-

PGCH_ch02_021-042.indd 26

8/9/18 7:45 AM

27 Chapter 2: Evolution of the Concept and Challenges of Global Health Research and Education

mendations of the Association of American Medical Colleges workforce report of 2006 resulted in the somewhat smaller but still substantial increase of 25% of entering medical students between 2002 and 2015.29 While these reports did not result in decisions to train more or fewer IMGs, this is not to say that the IMG presence was unnoticed. At various times since World War II, the question about quality of care practiced by IMG practitioners and/or house staff compared with their US-born counterparts has been raised. Importantly, several analyses indicate that the physicians who trained and then remained in the United States (or other high-income nation) provide not only care in physician shortage areas16,19 but equivalent-level quality of care. Saywell and colleagues audited attending-level performance30 and house staff performance21 and did not find any association of physician performance based on site of medical school training (eg, IMG vs US-based). Although not frequently commented on, the occasional publication did take note of the advantage conferred to the high-income nation who trained (and thus often retained) the IMGs—and, correspondingly, the disadvantage incurred by the low- to middle-income nation from which the IMG had originated.31 For example, in 2003, one former citizen of India who had trained in psychiatry in England observed that there were 27-fold more psychiatrists per 1,000 persons in England compared with India.32

Refocusing on International Health Within Emerging Nations During this period (up to the 1990s), USAID had continued to focus on the health of emerging nations, but medical schools and those agencies concerned with medical education remained largely focused on the health of the United States. During the 1990s a more conversational and introspective literature began to develop regarding international health in residency training. The literature on “international” health addressed the topic largely from the perspective of what residents could gain from this training, with limited attention to the effect of the training on the host countries (emerging nations). In general, the conversation focused on the values and experiences that the resident could take from an international child health elective, such as strengthening the skills and shaping the values of pediatric residents.33 The few review articles on this topic appearing during this period noted that there was little published information on international child health electives during residency, including a lack of guidelines as to what these electives should include. For example, a survey conducted in 1990 revealed that only 15% of US students participating in overseas electives received preparatory training. Most such electives were unilateral exchanges, often arranged by the resident.34 A subsequent survey in 1995 found that among the 161 pediatric residency programs responding (from among 248 surveyed) in Canada and the United States, only 25% offered formal or informal international rotations, and those that did were found to be “inadequate.”33 Over the next decade, there was a steady and marked increase in the interest and involvement of pediatric residency training programs in international health. A 2006 survey of US pediatric residency programs (among 87 responding

PGCH_ch02_021-042.indd 27

8/9/18 7:45 AM

28 Part 1: Operating Principles for Engaging in Global Education and Research

Table 2-1. The 10 International Child Health Electives: Consensus Guidelines of the American Academy of Pediatrics Section on International Child Health Guideline

Description

1

The first 1½ years of pediatric residency should be completed.

2

An elective block of at least 4 weeks should be committed to the elective.

3

A clinical experience (preferably hands on) should form the basis for the elective.

4

It is necessary to have faculty preceptors in the host country, as well as in the United States.

5

Cross-cultural health, personal safety, and awareness orientation should occur prior to the elective.

6

Written objectives should be prepared by the resident, before the elective.

7

In the host country, the resident should be able to speak a common language with the rest of the health care team.

8

A formal evaluation process should occur during the elective.

9

At the culmination of the experience, the resident should give a written/oral presentation about it.

10

Upon returning home, the resident should participate in a debriefing session.

programs) found that 70% included instruction in international health, most commonly lectures and/or international electives.35 Nearly three-quarters of those without such training expressed an interest in developing it. During this period, the American Academy of Pediatrics (AAP) developed consensus guidelines for an international experience (Table 2-1).33 Despite these advances, there was little description of reciprocal programs (eg, residents from emerging countries traveling for electives in the United States), and little description of the duration of relationship between these country sites. The AAP guidelines addressed the needs and preparation for the residents and residency programs from the United States and Canada, but guidelines addressing the needs of the host were not discussed.

Discussions and Foci in the New Millennium

A New Landscape The new millennium has witnessed substantial evolution of the concept of the global responsibility for the health of the world’s people with the emergence of many new organizations seeking to collaboratively define and achieve this (elusive) goal. To reflect the intention of global equity in health, the term global health has replaced that of international health.36

PGCH_ch02_021-042.indd 28

8/9/18 7:45 AM

29 Chapter 2: Evolution of the Concept and Challenges of Global Health Research and Education

Arguably, the UN Millennium Development Goals (MDGs) were transformative in terms of articulating the interdependence of economic development, healthy individuals, a healthy population, and a global responsibility for the health and development of all regions of the world. Moreover, the MDGs have set the precedent for global articulation of clear and achievable (albeit highly aggressive) goals; constant, public, data-driven assessment of these goals; and realignment of strategies around these goals based on ongoing data collection and analysis and public awareness of the program successes and failures to ensure accountability.37–39 Although preparatory work began in the 1990s, the initiative was officially launched in 2000 with the UN Millennium Summit and the adoption of the UN Millennium Declaration, committed to by all members of the UN. The plan sought to achieve 8 MDGs by 2015: 1. To eradicate extreme poverty and hunger 2. To achieve universal primary education 3. To promote gender equality and empower women 4. To reduce child mortality 5. To improve maternal health 6. To combat HIV/AIDS, malaria, and other diseases 7. To ensure environmental sustainability 8. To develop a global partnership for development Detailed, evidence-based reports from countries across the globe were published on free, publicly available sites and beginning in 2005, annual reassessment of progress and strategies were made throughout the process. In addition to an annual report, each year the MDG program published a progress chart with specific regional tasks/accomplishments for each of the 8 goals, “graded” according to level of completion.40 The Bill and Melinda Gates Foundation (www.gatesfoundation.org) has been a major source of financial and visionary support explicitly addressing sustainable, bilateral collaborations. Started in 2008 with funding from the Bill and Melinda Gates Foundation and the Rockefeller Foundation and based in Washington, DC, the Consortium of Universities for Global Health (CUGH; www.cugh.org) now includes 96 academic institutions and related groups from nations across the globe. Its purpose is to use the platform of academia to address global health challenges in all countries from an international perspective. The consortium views itself as a hub for best practices in training and research and is “committed to translating knowledge into action.”41 The Global Health Education Consortium (www.who.int/workforcealliance/members_partners/member_list/ghec/en) was established in 1991 in anticipation of the MDG agenda.42 This network of universities and institutions is committed to global training and education and originally was committed to establishing formal academic programs in global health, which are now available through CUGH. The Canadian Coalition for Global Health Research (www.ccghr.ca) partners with 28 nations “to promote better and more equitable health worldwide through the production and use of knowledge.”

PGCH_ch02_021-042.indd 29

8/9/18 7:45 AM

30 Part 1: Operating Principles for Engaging in Global Education and Research

The World Federation of Academic Institutions for Global Health (www.wfaigh. org), launched in 2013, seeks to be a “global platform for an academic voice to influence policies on health and global governance mechanisms, to promote methodological development and research, and to share good practice in capacity building and on education.” Central features of virtually all these organizations are their specific and concerted examination of issues from multiple perspectives and partnering with agencies and groups representing different nations, constituencies, and disciplines, including organizations who had not previously been engaged in global health. Francis Collins, MD, PhD, director of the NIH, initiated the NIH Common Fund (http://commonfund.nih.gov/globalhealth/index) to support high-priority areas for the NIH including global health. This focus of the Common Fund, in collaboration with the FIC (described earlier in this chapter), is designed to expand the strength and reach of the FIC training and research programs at home in the United States and abroad among international researchers, with a particular focus on building the research infrastructure in emerging nations, both within and among countries. The World Bank has evolved from an institution with no active presence in global health to the world’s largest financial institution involved in global health. In large measure this transition of focus occurred as a result of its recognition that global well-being and economic stability are not possible in the absence of global health.6 Likewise, the AAP has established a Section on International Child Health and a Section on International Medical Graduates. The AAP Section on International Child Health is dedicated to ensuring that its members will be able to contribute in a substantial and meaningful way to global child health through education, collaboration, and advocacy. Among many other things, its Web site has provided public access to a Global Health Resource Toolkit43 to help those interested in designing a curriculum for global health training. The site also describes several of the many joint educational and research partnerships across the globe sponsored by the AAP, often in collaboration with other organizations such as WHO. Given the progress made by the global commitment to the goals expressed by the MDG program, the UN built on the spirit of shared health goals across the globe and created the Sustainable Development Goals. Again, the overarching goals are global but are built on a framework of local and national goals.44 Corresponding with such a reorganization of efforts, the focus and content of the conversation about training physicians have shifted in the new millennium. There is growing recognition that global health is in fact just that: the health of persons everywhere. The health of persons in one continent is not just the ethical responsibility of humankind everywhere; it also directly affects health across the world. Not only have the concerns about the “brain drain” not been dismissed or adequately addressed, but the implications have been intensified as concerns arise about shortages of physicians globally. In the past, to the extent that there was a serious attempt to elevate the health care system of lowand middle-­income nations, the primary mentor had typically been one or

PGCH_ch02_021-042.indd 30

8/9/18 7:45 AM

31 Chapter 2: Evolution of the Concept and Challenges of Global Health Research and Education

more industrialized nations; now, regional networks are being formed to support and sustain the growth and development of sister nations’ health infrastructure. Such regional networking/support is increasing, leading to greater focus on the circumstances under which individuals should be trained in another country, what that training should include, and where the graduates should practice after completing their training. The level of discourse openly acknowledges the moral, economic, and public health complexities in offering (or not offering) highly specialized and technology-dependent professional training to the physician workforce from low- and middle-income nations (see also Chapter 1). Finally, teaching institutions and educational certification bodies are actively engaged in addressing from multiple perspectives the issues that need to be addressed in global health, global health care delivery, global health education, and global health research. The American Board of Pediatrics (ABP), working closely with the AAP, has created the ABP Global Health Task Force, which seeks to “…to develop and promote a robust global health agenda that will improve the quality of care for children worldwide.”45,46 In the following subsections we provide more detail and examples of each of these themes.

Physician Shortage Affects Low- and Middle-Income Countries As noted earlier in this chapter, beginning early in the 20th century, multiple physician workforce studies have been conducted in the United States, many of which have projected physician shortages,28 particularly with respect to primary care.25 The physician shortage has been mitigated in part by the large number of IMGs.27 A similar situation exists for many high-income nations. For example, similar to the United States, about 25% of the physician workforce in Australia is composed of IMGs.47 However, in an analysis of global distribution of need and physician workforce, the WHO Americas region had more than 50% of health expenditure and 20% of the world’s physicians but only 10% of the disease burden; likewise, the WHO Europe region had 35% of the world’s physicians and 32% of health expenditures but about 10% of the world’s disease burden. By contrast, the WHO South-East Asia region has 29% of the global disease burden but just 11% of the physicians, and the WHO Africa region has 24% of the global disease burden but only 2% of the global physician supply (Figure 2-1).48 Not surprisingly, given this backdrop, WHO predicted that in 2015, Europe, the Americas, and the Western Pacific would have a considerable surplus of physicians, while Southeast Asia would have approximately the number needed, but Africa would face a severe shortage. While the predicted surpluses have not occurred in the USA,49 the predicted shortages in Africa prevail. Importantly, as we shall discuss in the next section, despite any overall surpluses and/or deficits of physician availability, there is great variation between and within geographically proximate nations. For example, although the WHO Africa region overall suffers from significant physician shortages, there is great variation in this regard among the nations and within nations.50,51

PGCH_ch02_021-042.indd 31

8/9/18 7:45 AM

32 Part 1: Operating Principles for Engaging in Global Education and Research

35

Global Burden of Disease (%)

30 South-East Asia

25 African

20

Western Pacific

15 10 Eastern Mediterranean

5 0

Americas 0

5

10

15

20 25 30 Global Physicians (%) Size of circle reflects regional share of global expenditure

European 35

40

45

Figure 2-1. Physician Distribution by Burden of Disease and Health Expenditure, by World Health Organization Region, 2004 From Scheffler RM, Liu JX, Kinfu Y, Dal Poz MR. Forecasting the global shortage of physicians: an economicand needs-based approach. Bull World Health Organ. 2008;86(7):516–523B, with permission from the World Health Organization.

Such regional imbalances open the possibility of regional distribution. It is important to note that there is a significant distinction in terms of deficits and surpluses from a needs perspective versus a demand-based perspective (see Appendix C). Many nations in Africa have high physician deficits in terms of health care needs but low or no demand physician deficits; that is, their population needs more physicians to provide adequate care, but there are insufficient resources with which to pay them for such services and, thus, there is not an unmet demand. This picture of high need/low demand is the opposite of countries like the United States, wherein there are areas of needs-based surplus of physicians but great demand to have immediate care. However, also in the United States, like many low- and middle-income countries, the maldistribution of physicians has resulted in classically underserved areas, including innercity and rural communities. The disaggregation of overall data is needed to identify areas of need regardless of the classification of a country as industrialized or high income (see also Chapter 1). Globally, the demand surplus is substantially lower than the need surplus (Table 2-2).48

PGCH_ch02_021-042.indd 32

8/9/18 7:45 AM

PGCH_ch02_021-042.indd 33

Table 2-2. Projected Supply of, Need for, and Demand for Physicians, by World Health Organization Region, 2015 WHO Region Africa

Eastern Mediterranean Europe South-East Asia Western Pacific World

Needb

Demandc

(1,000s)d

(1,000s)d

Surplus (1) or Shortage (2)d,e

(1,000s)

Surplus (1) or Shortage (2)d,f

255

422

2167

144

111

(208–329)

(377–469)

(2213–2122)

(131–159)

(96–124)

2,773

538

2,235

1,885

888

(2,509–3,120)

(481–599)

(2,174–2,293)

(1,620–2,196)

(578–1,153)

1,077

308

769

520

557

(914–1,297)

(275–343)

(734–802)

(442–612)

(465–635)

3,222

480

2,742

2,913

309

(3,015–3,449)

(429–534)

(2,687–2,793)

(2,615–3,259)

(238–607)

1,067

987

80

910

157

(931–1,225)

(882–1,097)

(230–186)

(718–1,155)

(287–350)

4,256

1,016

3,240

4,432

2176

(3,853–4,883)

(907–1,130)

(3,126–3,348)

(3,107–6,347)

(22,092–1,148)

12,650

3,752

8,898

10,804

1,846

(11,430–14,303)

(3,351–4,171)

(8,478–9,299)

(8,633–13,728)

(21,078–4,017)

33

8/9/18 7:45 AM

Abbreviation: WHO, World Health Organization. a Supply is projected based on the historical growth of physicians per capita in each country. b Need is assessed based on reaching the goal of 80% of live births attended by a skilled health care worker. c Demand is projected based on economic growth (both historical and projected) of each country. d Values in parentheses are 95% confidence intervals. e Surplus (shortage) is calculated as mean projected supply minus estimated need. High and low estimates reflect the 95% confidence interval of the needs-based–estimated 80% coverage a­ ttainment level. f Surplus (shortage) is calculated as mean projected supply minus estimated demand. High and low estimates reflect the 95% confidence interval of the demand-based–estimated coefficients. From Scheffler RM, Liu JX, Kinfu Y, Dal Poz MR. Forecasting the global shortage of physicians: an economic- and needs-based approach. Bull World Health Organ. 2008;86(7):516–523B, with permission from the World Health Organization.

Chapter 2: Evolution of the Concept and Challenges of Global Health Research and Education

Americas

Supplya

34 Part 1: Operating Principles for Engaging in Global Education and Research

Eliminating the Pull and Push Creating the “Brain Drain” This issue of a global malredistribution of physicians is a topic that must be addressed. As has occasionally been done in the past,31,32 questions must be raised about the ethics of training and retaining IMGs in physician-abundant countries from physician-depleted countries. While it is true that, to some extent, the training may be viewed as a problem for the host country (high-income nation) if the IMG does not remain in the country providing the training after graduation, this is an issue of much less consequence than the reverse. That is, if the trainee originally from a low- or middle-income country does not return to his or her country of origin post-training, the country of origin does not benefit medically from its citizen having been trained abroad. The final issue—and an important reality—is that, in many cases, the now highly skilled physician would not be able to practice his or her new technology-dependent skills in his or her country of origin. In 2009, the G8 Summit Consortium identified a broad strategy to change the landscape in sub-Saharan Africa and other physician-depleted areas. “We will…begin to address substantial gaps in knowledge about how to manage, organize and deliver health care in Sub-Saharan Africa through a variety of strategies, including by developing networks of researchers and by working with our African partners to establish a consortium of interdisciplinary centers of health innovation.”52 This concept of creating an intellectual and resource-rich regional hub to support returning IMGs to their native countries is critically important in the attempt to bring the “brain drain” to an end. With the momentum established by the G8 Summit, specific programs are being developed to address it. One such example, based on the foundation of the President’s Emergency Plan for AIDS Relief, is the Medical Education Partnership Initiative.53 Composed of 13 African institutions in 12 African countries, the African network includes more than 30 regional partners, including country health and education ministries, and more than 20 US collaborating institutions. The network joins together the leaders in medical education, biomedical research, and clinical care throughout Africa and the United States and between the African institutions and their health ministries. These linkages have been purposefully established and are viewed as critical to sustained collaborative planning, retention in the African nations of graduates, and local innovations in education and research. This new strategy of offering enhanced training to physician-citizens in low- and middle-income countries in regional centers of excellence confers many benefits to the host nations, including the following: 1) offering enhanced technology to the local citizenry; 2) allowing many of its physicians to receive advanced training without having to leave the area for prolonged periods; and 3) offering a more competitive infrastructure to retain its highly educated physician-citizens. In fact, such a strategic approach to training and resource investment will enable these nations to serve as vibrant partners in global health education and research with peers from industrialized (high-­income) nations.

PGCH_ch02_021-042.indd 34

8/9/18 7:45 AM

35 Chapter 2: Evolution of the Concept and Challenges of Global Health Research and Education

Paying Attention to Multiple Factors When Training Physicians in Other Countries The recognition of the importance of cultural competence (see Appendix C) in training US medical students to address culturally diverse groups within the United States has become a cornerstone of medical training. Beginning in 2000, the Liaison Committee on Medical Education (LCME) formalized this training requirement strategy. “The faculty and students must demonstrate an understanding of the manner in which people of diverse cultures and belief systems perceive health and illness and respond to various symptoms, diseases, and treatments. Medical students should learn to recognize and appropriately address gender and cultural biases in health care delivery, while considering first the health of the patient.”54 This standard has given added impetus and emphasis to medical schools to introduce education in cultural competence into the undergraduate medical curriculum. Such focus on the importance of culture, social expectations, and differing conceptualizations of illness and wellness between the physician and patient (and patients from differing backgrounds) are of great importance. However, these broad LCME recommendations only begin to address the myriad of potential incongruences between an IMG and his or her patients in the country of training. The issues confronting IMGs include different cultural expectations in a high-income setting compared with an Asian or African setting, language incongruity for the IMG (eg, practicing medicine in English but coming from a different language background), understanding the protocols and expectations of the new medical system, trying to adjust to new learning styles and trainer/ trainee expectations, different disease prevalence, and simple homesickness and loneliness. A Medline search of evidence-based articles on communication-­ related issues in IMG training revealed 5 key themes regarding the need for 1) IMGs to adjust to a change in status; 2) training programs to recognize that a very high level of language proficiency is needed to communicate with patients; 3) training programs to actively work with IMGs to develop their communication skills, including subtle aspects of interaction; 4) attendings and other teachers to learn about and understand the IMGs’ prior experiences with and expectations for the teacher-student learning environment; and 5) effectively communicating and relating with a wide variety of people.47 Other authors writing on this topic provide specific examples, such as the response to and treatment of pain in different cultures.55 Working with IMGs to provide these skills should be viewed as an institutional commitment to an IMG who is accepted into a training program in another country. Whether or not the IMG remains in the new country after training, such skills and awareness of these issues will increase that IMG’s ability to function effectively in any setting. There is a small but robust literature addressing the application process for IMGs, often written from the perspective of former IMG applicants.56

PGCH_ch02_021-042.indd 35

8/9/18 7:45 AM

36 Part 1: Operating Principles for Engaging in Global Education and Research

Certifying Organizations Involved in Identifying Global Health Components to Be Addressed in Curricula High-, middle-, and low-income countries are beginning to specifically address global health issues as part of core curricula. In 2008, the ABP Foundation, International Pediatric Association, and other leaders from the international pediatric education, training, and accreditation global communities met to discuss improving health care for children at a global level. The conversation began with a focus on providing quality metrics and standardized examinations demonstrating competence in these metrics to low-income countries as a way to elevate the quality of training. In short time the focus was expanded to the entire training system, including curricula at all levels, assessment processes and certification, and the idea of continuous professional development. The resulting international collaborative organization, the Global Pediatric Education Consortium (GPEC),57 includes 20 national and international pediatric and accrediting organizations from Africa, Asia, Europe, Latin America, and North America, representing 50 nations. The consortium has established a core set of 12 educational documents defining and describing 12 basic competencies for pediatricians across the globe to gain during medical training and to maintain throughout physician careers, as well as supporting training and testing materials. The Global Pediatric Curriculum and Global Assessment Toolbox are derived from the national training and testing materials of the participating organizations. Likewise, within industrialized nations there is growing need to address the consequences of globalization for the US core curriculum. This recognition has prompted at least some institutions to integrate these issues into the main curriculum, rather than sidelining them in a special “international health” curriculum. Encouraging or even requiring participation in a global health clinic (independent of whether a student participates in an elective in a low- or middle-income country) will enable students to better understand why issues in global health are important for every physician to understand.58 At the same time, while international residency rotations are growing in popularity, many issues remain, including resistance by some US hospitals to allow residents to partake in overseas experiences because of the potential financial loss of GME support during that period.35

What Must the Future Offer? This chapter has described the evolution to date of our profession’s understanding of global health and efforts to achieve that goal. This final section will describe what constructs must be established to continue the progress made to date. The momentum for viewing health within and across all borders, recognizing the role that institutes of learning can and should play in global health, and assessing resources at a global and regional/continental level is substantial. The factors underlying this change are numerous and seem unlikely to recede:

PGCH_ch02_021-042.indd 36

8/9/18 7:45 AM

37 Chapter 2: Evolution of the Concept and Challenges of Global Health Research and Education

telecommunications that allow instant and constant visual and auditory news transmission; economic interdependence between nations and continents; multiple pandemics over the last several years; and a substantial infrastructure committed to international collaboration. The vision and success of several organizations and campaigns concerned with global health and development that have emerged over the last 2 decades (the most notable of which is, arguably, the MDG program discussed earlier in this chapter) have created a shared sense of vulnerability and accountability. Health professionals have long been dedicated to improving the well-being of their constituencies, but, at least until the turn of the 20th century, such constituencies were local and national. Perhaps beginning in the aftermath of World War I, increasing after World War II, and with great expansion in the new millennium, the scope of responsibility has dramatically widened. This evolution of responsibility has been uneven in growth and scope; even today, there remains limited integration of the concepts of health of the individual and public health within the medical profession, let alone global public health. The medical profession must continue its evolution toward shouldering responsibility for the health of the population. There cannot be a healthy population without healthy individuals, but a focus on the health of individuals alone will not necessarily lead to the health of the population, as the United States has come to understand. As a corollary, the medical profession must continue to be guided by recognition that its responsibility is local, national, and global and that it must act in coordination with other health professions—but that coordination does not necessarily mean “in the lead.” To successfully evolve to a profession dedicated to the health of the population at a global level will require continued profound evolution of training, research, and workforce deployment and practice. We have learned over the last century that an educational curriculum that is not based on outcomes and that does not align its resources with these outcomes will not succeed. The collaborations and partnerships that have and will have responsibility for achieving global health must be guided by the experience to date in the following key areas.

Outcome-Driven Workforce Training and Deployment Healthy populations require a well-trained workforce whose numbers and expertise are needs based. The training and deployment must be deliberate and built around outcomes. If indeed there is a commitment to global health, the training and deployment must reflect this commitment. Outcomes must be evidence based, which means that the establishment of desired outcomes, and the training to achieve these outcomes and deployment of the trained workforce, must be based on research. This process must be global in its design and vision and in its training and workforce deployment.

PGCH_ch02_021-042.indd 37

8/9/18 7:45 AM

38 Part 1: Operating Principles for Engaging in Global Education and Research

Creating and Maintaining an Integrated and Evolving Infrastructure That Supports the Desired Outcomes Continual assessment of the success of the strategies to achieve the desired outcomes, leading to purposeful strategic adjustment and corresponding adjustment of the workforce numbers and training, will be essential for the continued success of outcome-driven training and deployment. Likewise, periodic, purposeful reassessment of the desired outcomes must be undertaken.

Attending to Multiple Factors When Training Physicians in Other Countries Training of the medical workforce for global health will require vigilance in terms of the outcomes, the resources that will be needed globally to allow the workforce to succeed wherever it is located, and the recognition of the importance of culture and communication in the effectiveness of the workforce.

Integrating Certifying Organizations Into All Aspects of the Global Agenda and Adequately Reflecting This Agenda in Curricula and Competencies Ultimately, it is these agencies that determine how medical and allied health professionals practice and, to a large extent, where they practice. Therefore, the globalization effort must not only recognize the critical importance of these organizations but fully integrate them into the processes described previously regarding evidence-based outcomes, strategies including training and deployment, and assessment.

Conclusions This brief history of the recent evolution of our understanding of global health and the role of individual nations and agencies in this process underscores the need for ▶▶ A global perspective in all aspects of the medical school curriculum ▶▶ A global perspective in resource allocation for health, including training, deployment, and support for the health care workforce ▶▶ A strong evidence base for the establishment of outcomes and strategies with a global perspective in research design ▶▶ A detailed, highly visible ongoing assessment of the effectiveness of current strategies in achieving the desired outcomes

PGCH_ch02_021-042.indd 38

8/9/18 7:45 AM

39 Chapter 2: Evolution of the Concept and Challenges of Global Health Research and Education

References 1. Borowy I. The League of Nations health organization: from European to global health concerns. In: Andresen A, Hubbard WH, Ryymin TS, eds. International and Local Approaches to Health and Health Care. Oslo, Norway: Novus Press; 2010:11–29 2. Borowy I. Coming to Terms with World Health. The League of Nations Health Organization 19211946. Frankfurt am Main, Berlin, Germany: Peter Lang; 2009 3. US Department of State Office of the Historian. Milestones: 1914–1920. The League of Nations, 1920. https://history.state.gov/milestones/1914-1920/league. Accessed June 29, 2018 4. Ruger JP. The changing role of the World Bank in global health. Am J Public Health. 2005;95(1): 60–70 5. The IMF and the World Bank. International Monetary Fund Web site. http://www.imf.org/en/ About/Factsheets/Sheets/2016/07/27/15/31/IMF-World-Bank. Accessed June 29, 2018 6. Wolff MJ. Failure of the International Monetary Fund and World Bank to achieve integral development: a critical historical assessment of Bretton Woods Institutions’ policies, structures and governance. Syracuse J Int Law Commerce. 2013;41(1):71–144 7. Copelovitch MS. Master or servant? Common agency and the political economy of IMF lending. Int Stud Q. 2010;54(1):49–77 8. Foreign Assistance Act of 1961. Section 102: Development Assistance Policy. 22 USC §2151. https://legcounsel.house.gov/Comps/Foreign%20Assistance%20Act%20Of%201961.pdf. Accessed June 18, 2018 9. S& P Dow Jones Indices. Dow Jones Global Indices Methodology. http://us.spindices.com/ documents/methodologies/methodology-dj-global-indices.pdf. Published September 2017. Accessed March 13, 2018 10. S& P Dow Jones Indices. Country Classification Methodology. https://us.spindices.com/ documents/index-policies/methodology-country-classification.pdf. Published October 2016. Accessed June 18, 2018 11. Millar HE. Training MCH personnel from other nations. Health Serv Rep. 1972;87(7):588–591 12. Kanaaneh HA. Health education in developing countries. Public Health Rev. 1977;6(3–4):239–276 13. Irigoyen M, Zambrana RE. Foreign medical graduates (FMGs): determining their role in the U.S. health care system. Soc Sci Med Psychol Med Sociol. 1979;13A(6):775–783 14. Haug JN, Stevens R. Foreign medical graduates in the United States in 1963 and 1971: a cohort study. Inquiry. 1973;10(1):26–32 15. Stevens RA, Goodman LW, Mick SS. What happens to foreign-trained doctors who come to the United States? Inquiry. 1974;11(2):112–124 16. Mullan F, Politzer RM, Davis CH. Medical migration and the physician workforce. International medical graduates and American medicine. JAMA. 1995;273(19):1521–1527 17. Wilentz J, ed. Fogarty at 35. Bethesda, MD: National Institutes of Health; 2013. http://www.fic.nih. gov/News/Documents/history-fogarty-at35.pdf. Accessed June 18, 2018 18. National Institutes of Health Fogarty International Center. History of the Fogarty International Center. http://www.fic.nih.gov/About/Pages/History.aspx. Accessed June 18, 2018 19. Mick SS. Foreign medical graduates and U.S. physician supply: old issues and new questions. Health Policy. 1993;24(3):213–225 20. Hart LG, Skillman SM, Fordyce M, Thompson M, Hagopian A, Konrad TR. International medical graduate physicians in the United States: changes since 1981. Health Aff (Millwood). 2007;26(4):1159–1169 21. Saywell RW Jr, Studnicki J, Bean JA, Ludke RL. A performance comparison: USMG-FMG house staff physicians. Am J Public Health. 1980;70(1):23–28 22. Knobel RJ. Placement of foreign-trained physicians in U.S. medical residencies. Med Care. 1973;11(6):224–239 23. New York Academy of Medicine Committee on the Costs of Medical Care. Medical Care for the American People: the Final Report of the Committee on the Costs of Medical Care, adopted October 1932. Chicago, IL: University of Chicago Press; 1932

PGCH_ch02_021-042.indd 39

8/9/18 7:45 AM

40 Part 1: Operating Principles for Engaging in Global Education and Research

24. IHS Inc. The Complexities of Physician Supply and Demand: Projections from 2013 to 2025. Prepared for the Association of American Medical Colleges. Washington, DC: Association of American Medical Colleges; 2015. https://www.aamc.org/download/426248/data/ thecomplexitiesofphysiciansupplyanddemandprojectionsfrom2013to2.pdf. Accessed July 5, 2018 25. Cooper RA, Getzen TE, McKee HJ, Laud P. Economic and demographic trends signal an impending physician shortage. Health Aff (Millwood). 2002;21(1):140–154 26. Ginzberg E. Physician supply policies and health reform. JAMA. 1992;268(21):3115–3118 27. Mick SS. Contradictory policies for foreign medical graduates. Health Aff (Millwood). 1987; 6(3):5–18 28. Surgeon General’s Consultant Group on Medical Education. Physicians for a Growing America: Report of the Surgeon General’s Consultant Group on Medical Education. Washington, DC: US Dept of Health, Education, and Welfare, Public Health Service; 1959. DHEW publication (PHS) 709 29. Association of American Medical Colleges. Nation’s medical schools increase enrollment by 25 percent since 2002. https://www.aamc.org/newsroom/newsreleases/459956/enrollment_ survey_05052016.html. Published May 5, 2016. Accessed June 18, 2018 30. Saywell RW Jr, Studnicki J, Bean JA, Ludke RL. A performance comparison: USMG-FMG attending physicians. Am J Public Health. 1980;70(1):23–28 31. Patel V, Araya R. Trained overseas, unable to return home: plight of doctors from developing countries. Lancet. 1992;339(8785):110–111 32. Patel V. Recruiting doctors from poor countries: the great brain robbery? BMJ. 2003;327(7420): 926–928 33. Torjesen K, Mandalakas A, Kahn R, Duncan B. International child health electives for pediatric residents. Arch Pediatr Adolesc Med. 1999;153(12):1297–1302 34. Heck JE, Wedemeyer D. A survey of American medical schools to assess their preparation of students for overseas practice. Acad Med. 1991;66(2):78–81 35. Kamat D, Armstrong RW; Association of Medical School Pediatric Department Chairs, Inc. Global child health: an essential component of residency training. J Pediatr. 2006;149(6):735–736 36. Alleyne GA. Global health: the twenty-first century global health priority agenda. Infect Dis Clin North Am. 2011;25(2):295–297 37. Dora C, Haines A, Balbus J, et al. Indicators linking health and sustainability in the post-2015 development agenda. Lancet. 2015;385(9965):380–391 38. Prendergast AJ, Essajee S, Penazzato M. HIV and the Millennium Development Goals. Arch Dis Child. 2015;100(suppl 1):S48–S52 39. Dye C. After 2015: infectious diseases in a new era of health and development. Philos Trans R Soc Lond B Biol Sci. 2014;369(1645):20130426 40. Millenium Development Goals: 2015 Progress Chart. http://www.un.org/millenniumgoals/2015_ MDG_Report/pdf/MDG%202015%20PC%20final.pdf. Accessed June 18, 2018 41. Consortium of Universities for Global Health. Consortium of Universities for Global Health Annual Report 2015-2016. Washington, DC: Consortium of Universities for Global Health; 2017. http://www.cugh.org/sites/default/files/Annual%20Report%20FINAL%2003.08.2017.pdf. Accessed June 18, 2018 42. Velji A. Global health education consortium: 20 years of leadership in global health and global health education. Infec Dis Clin North Am. 2011;25(2):323–335 43. AAP Section on International Child Health Global Health Resource Toolkit. https://www.aap.org/ en-us/about-the-aap/Committees-Councils-Sections/soich/Pages/GH-Resource-Toolkit.aspx. Accessed February 8, 2018 44. United Nations. Transforming our world: the 2030 Agenda for Sustainable Development. https://sustainabledevelopment.un.org/post2015/transformingourworld. Published 2015. Accessed June 18, 2018 45. University of Wisconsin Department of Pediatrics. Dr. Sabrina Butteris to Serve on American Board of Pediatrics’ Global Health Task Force. https://www.pediatrics.wisc.edu/news-events/drsabrina-butteris-to-serve-on-american-board-of-pediatrics-global-health-task-force. Accessed June 29, 2018

PGCH_ch02_021-042.indd 40

8/9/18 7:45 AM

41 Chapter 2: Evolution of the Concept and Challenges of Global Health Research and Education

46. American Board of Pediatrics. Global Health in Pediatric Education: An Implementation Guide for Program Directors. https://www.abp.org/sites/abp/files/pdf/ globalhealthinpediatriceducationimplementationguideforprogramdirectors.pdf. Accessed June 29, 2018 47. Pilotto LS, Duncan GF, Anderson-Wurf J. Issues for clinicians training international medical graduates: a systematic review. Med J Aust. 2007;187(4):225–228 48. Scheffler RM, Liu JX, Kinfu Y, Dal Poz MR. Forecasting the global shortage of physicians: an economic- and needs-based approach. Bull World Health Organ. 2008;86(7):516–523B 49. Association of American Medical Colleges. 2018 Update: The Complexities of Physician Supply and Demand: Projections From 2016 to 2030. Washington, DC: IHS Markit Ltd.; March 2018 50. Quartz. Africa has about one doctor for every 5000 people. https://qz.com/520230/africa-hasabout-one-doctor-for-every-5000-people. Accessed June 18, 2018 51. World Health Organization. WHO Global Health Workforce Statistics. 2017 update. http://www.who.int/hrh/statistics/hwfstats/en/. Document1. Accessed June 18, 2018 52. Guebert J. G8 Commitments on Health, 1975-2009. http://www.g8.utoronto.ca/evaluations/ g8-commitments-health-to-2009.html. Compiled December 16, 2009. Updated January 15, 2010. Accessed June 18, 2018 53. Medical Education Partnership Initiative. What is MEPI? http://www.mepinetwork.org/ about-mepi/what-is-mepi. Accessed June 18, 2018 54. Association of American Medical Colleges. Cultural Competence Education. Washington, DC: Association of American Medical Colleges; 2005. https://www.aamc.org/download/54338/data/ culturalcomped.pdf. Accessed June 18, 2018 55. Meghani SH, Rajput V. Perspective: the need for practice socialization of international medical graduates—an exemplar from pain medicine. Acad Med. 2011;86(5):571–574 56. Adebonojo SA, Mabogunje OA, Pezzella AT. Residency training in the United States: what foreign medical graduates should know. West Afr J Med. 2003;22(1):79–87 57. Global Pediatric Education Consortium. Our vision. Our mission. http://globalpediatrics.org/ aboutus.html. Accessed June 18, 2018 58. Drain PK, Primack A, Hunt DD, et al. Global health in medical education: a call for more training and opportunities. Acad Med. 2007;82(3):226–230

PGCH_ch02_021-042.indd 41

8/9/18 7:45 AM

PGCH_ch02_021-042.indd 42

8/9/18 7:45 AM

43

CHAPTER 3

Positive Strategies in Achieving Health for All Children: An Equity Framework and Its Effect on Research Design and Education Renee Sharma, MSc Jai K. Das, MBBS, MD, MBA Zulfiqar A. Bhutta, MBBS, DCH, FRCP, FRCPCH, FCPS, FAAP, PhD

abstract The United Nations Millennium Development Goals (MDGs) adopted by world leaders in 2000 aimed to address some of the most pressing global issues of our times: extreme poverty, unequal health, and inequities in development. The MDGs, a set of interrelated targets to be met by 2015, catalyzed political commitment toward improving child survival and maternal health. Millennium Development Goals 4 and 5 called for a two-thirds reduction in the younger-than-5 child mortality rate and a three-quarters reduction in the maternal mortality ratio, respectively, from 1990 base figures.1 Although concerted global efforts have led to substantial reductions in maternal and child mortality over the past 25 years, MDG 4 and 5 targets have not been fully realized. Only 62 of the 195 countries with available estimates achieved the MDG 4 target, of which 24 were low-income and lower-middle–income countries.2 Only 2 regions, East Asia and the Pacific (69% reduction) and Latin America and the Caribbean (67% reduction), met the target at a regional level.2 For MDG 5, of the 95 countries that had a maternal mortality ratio of more than 100 in 1990, only 9 achieved the target for reduction in maternal mortality: Bhutan, Cambodia, Cape Verde, Iran, Laos, Maldives, Mongolia, Rwanda, and Timor-Leste.3 As we celebrate the fact that the global younger-than-5 mortality rate and maternal mortality ratio have fallen by 53% and 43.9%, respectively, since 1990, we also face the sobering reality that high numbers of women and children are still dying every year, largely due to conditions that could have been prevented or treated if existing cost-effective interventions were universally available.2–4 The burden of mortality also remains unevenly distributed, with the largest numbers and highest rates of maternal and younger-than-5 deaths

PGCH_ch03_043-060.indd 43

8/20/18 7:56 AM

44 Part 1: Operating Principles for Engaging in Global Education and Research

concentrated in countries of sub-Saharan Africa and South Asia, especially in lower-income countries and among fragile states, especially those with ongoing conflict.2,3,5 2015 marked the end of the MDG era and the beginning of a new global framework, the Sustainable Development Goals (SDGs). This new framework presents an opportunity to leverage the momentum built over recent decades to tackle global inequities in maternal and child health. Of these SDGs, goal 3 also calls for an end to preventable deaths of newborns and children younger than 5 years, as well as a reduction in maternal mortality to less than 70 per 100,000 live births, by 2030.6 Achieving this target would require overcoming barriers and inequities in access to quality health services and, thus, implementing strategies to reach all mothers and children, including those who are most vulnerable, remote, and at risk. In this chapter, we discuss the current burden of younger-than-5 and maternal mortality, barriers contributing to health inequities, and, finally, evidence-based strategies to bridge these gaps.

Teaching Points 1 Globally, the leading causes of childhood mortality are infectious diseases (approximately 52%). An increasing proportion of childhood mortality occurs in the first 4 weeks after birth (approximately 44%), as prevention measures have reduced the deaths of older children.

2 A substantial, unaddressed number of stillbirths exists globally. In 2015, an estimated 2.6 million stillbirths occurred, 98% in low- and middle-income countries.

3 Children in poverty are 1.9 times as likely to die before the age of 5 years than children from the richest households. Poverty affects access to health interventions and nutrition. Almost 45% of all younger-than-5 child deaths may be associated with undernutrition.

4 Child health is strongly affected by maternal education, environmental factors, natural or person-made crises, and location (rural vs urban).

5 Key preventive, promotive, and curative interventions can significantly

improve the rates of younger-than-5 survival and include the training of community health workers and financial incentive programs.

6 The Child Health and Nutrition Research Initiative assists policy makers and investors to systematically identify research gaps and to examine the risks and benefits of investing in various research options.

PGCH_ch03_043-060.indd 44

8/20/18 7:56 AM

45 Chapter 3: Positive Strategies in Achieving Health for All Children: An Equity Framework

Global Burden and Trends of Child Mortality Worldwide, the number of children who die before their fifth birthday has declined from 12.7 million in 1990 to 5.9 million in 2015.2 There has been promising acceleration in the rates of decline in younger-than-5 mortality; the global annual rate of reduction (ARR) more than doubled from 1.8% in the 1990s to 3.9% in the 2000–2015 period.2 This decline in mortality since 2000 has saved the lives of an estimated 48 million children younger than 5 years.2 However, there continues to be wide disparities between regions and countries; in 2015, the younger-than-5 mortality rate ranged from 156.9 deaths per 1,000 live births in Angola to 1.9 in Luxembourg.2 Sub-Saharan Africa currently remains the region with the highest younger-than-5 mortality rate, with 1 in every 12 children dying before their fifth birthday, while in high-income countries, the ratio is 1 in 147.2 The number of maternal deaths has also dropped by nearly half, from 532,000 in 1990 to 303,000 in 2015.3 While impressive, progress has been highly variable; the rates of decline in maternal mortality since 1990 range from an ARR of 1.8% in the Caribbean to 5.0% in eastern Asia.3 In 2015, the maternal mortality ratio ranged from 3 deaths per 100,000 live births in Finland to 1,360 in Sierra Leone.3 The focus on maternal mortality as a marker for improvement in maternal health also masks concerning estimates that indicate that for every one woman who dies of pregnancy-related causes, 20 to 30 others experience acute or chronic morbidity, sometimes with permanent health effects that undermine their normal functioning and physical and mental well-being.7

Causes of Mortality Recent estimates show that women and children are dying from largely preventable conditions; most of the women and children are from disadvantaged populations. The Maternal and Child Epidemiology Estimation (MCEE) project reported that of the 6.3 million deaths in children younger than 5 years in 2013, 51.8% (3.257 million) were attributable to infectious causes and 44% (2.761 million) occurred in neonates (in the first 4 weeks after birth) (Figure 3-1).8 Among newborn deaths, major causes included preterm birth complications (15.4%; 0.965 million); intrapartum-related complications, previously labeled as birth asphyxia (10.5%; 0.662 million); and neonatal sepsis (6.7%; 0.421 million).8 Neonatal deaths represent an increasing proportion of all deaths in children younger than 5 years, as interventions have reduced deaths of older children.9 Among older children (1–59 months), the leading causes of death were infectious diseases, including pneumonia (12.7%; 0.800 million), diarrhea (8.9%; 0.558 million), and malaria (7.2%; 0.456 million).8 It is important to note that much of these estimates for cause of death are derived from verbal autopsies and vital registration data.8 2013 estimates from the Global Burden of Disease (GBD) study had good agreement ($5% difference) with MCEE global figures for all-cause younger-than-5 mortality, although the number of deaths for some major causes was different—notably, a higher proportion of deaths from malaria among children younger than 5 years in the GBD

PGCH_ch03_043-060.indd 45

8/20/18 7:56 AM

46 Part 1: Operating Principles for Engaging in Global Education and Research

Pneumonia (2%) (13%)

Neonatal death (44%)

Preterm birth complications (15%)

Intrapartum-related events (11%)

Other disorders (15%)

Sepsis (7%) Pertussis (1%) Meningitis (2%) AIDS (2%)

Congenital abnormalities (4%)

Malaria (7%) Injury (5%) Measles (2%)

Diarrhoea (9%)

Tetanus Other (1%) neonatal disorders (4%)

Figure 3-1. Causes of Child Mortality in 2013 From Liu L, Oza S, Hogan D, et al. Global, regional, and national causes of child mortality in 2000-13, with projections to inform post-2015 priorities: an updated systematic analysis. Lancet. 2015;385(9966):430– 440, with permission from Elsevier.

estimates and lower number of deaths from AIDS.10 Estimates for preterm birth complications and other neonatal conditions also significantly differed, likely due to differences in the International Classification of Diseases coding of neonatal causes by GBD as “other causes” instead of “preterm birth complications.”10 Apart from these child deaths, a substantial and unaddressed burden of stillbirths exists globally. While it is not included in the current MCEE or GBD estimates, it has been reported separately. The World Health Organization (WHO) defines stillbirth as the death of a child whose birth weight is at least 1,000 g or whose gestational age is at least 28 weeks (a third-trimester stillbirth).11 Globally, an estimated 2.6 million stillbirths occurred in 2015 and the average global stillbirth rate was 18.4 per 1,000 births, down from 24.7 in 2000.12 A 19% decline was observed since 2000, with 98% of all stillbirths occurring in low- and middle-­ income countries (77% in South Asia and sub-Saharan Africa).12 The highest risk exists during the intrapartum and postpartum period, when most maternal deaths, stillbirths, and neonatal deaths occur.11,13 Global Burden of Disease estimates indicate that this period accounted for 63.3% of maternal deaths in 2013.13 The 3 leading causes of maternal mortality in absolute numbers,

PGCH_ch03_043-060.indd 46

8/20/18 7:56 AM

47 Chapter 3: Positive Strategies in Achieving Health for All Children: An Equity Framework

both globally and in low-income countries, were hemorrhage (44,190), abortion (43,684), and other direct causes (56,114).13 In high-income regions, indirect causes and other direct causes were the 2 most important causes of maternal death, largely due to a decline in abortion-related deaths since 1990.13

A Closer Look at Inequities Recent publications and action plans that focus on lifesaving interventions are summarized in Box 3-1. Social determinants of health (“the conditions in which people are born, grow, live, work, and age”; see Appendix C) interact to define an individual’s exposure and vulnerability to disease.27 Such conditions vary within countries; therefore, focusing on progress in maternal and child survival made at the global or national level can undermine inequities that exist among subpopulations. Box 3-1. Recent Action Plans for Saving Lives Nutrition The 2008 Lancet nutrition series helped bring the highly neglected burden of maternal and child undernutrition onto the global agenda. It highlighted the 1,000 days from conception to 24 months after birth as a crucial window for improving nutrition and presented evidence on how to effectively address malnutrition.14 The Scaling Up Nutrition movement was subsequently launched in 2010, founded on the principle that everyone has a right to food and good nutrition15 and bringing together various stakeholders to achieve 6 nutrition-focused World Health Assembly targets by 2025.16 The 2013 Lancet nutrition series examined the double burden of malnutrition—continued stunting of growth and deficiencies of essential nutrients—along with the growing issue of obesity.17 More recently, the Global Nutrition Report has been published annually from 2014 to 2017 calling for intensified efforts and improved accountability to achieve reductions in malnutrition by 2030.18 Every Woman Every Child19 In September 2010, UN Secretary-General Ban Ki-moon launched Every Woman Every Child to intensify international and national action to address the major health challenges facing women and children worldwide. The movement put into action the Global Strategy for Women’s and Children’s Health, a road map on how to enhance financing, strengthen policy, and improve service on the ground for the most vulnerable women and children, and achieve the health Millennium Development Goals (MDGs). An updated Global Strategy for Women’s, Children’s and Adolescents’ Health was launched in September 2015, aligning with the targets and indicators developed for the Sustainable Development Goals (SDGs) framework. Committing to Child Survival: A Promise Renewed5 In June 2012, world leaders renewed their commitment to child survival during the global launch of A Promise Renewed. A Promise Renewed has focused on promoting 2 goals: first, keeping the promise of MDG 4 (to reduce the younger-than-5 mortality rate by two-thirds, between 1990 and 2015); and second, continuing efforts beyond 2015 to end preventable maternal and child deaths, with a target younger-than-5 mortality rate of 20 or fewer deaths per 1,000 live births by 2035.

PGCH_ch03_043-060.indd 47

8/20/18 7:56 AM

48 Part 1: Operating Principles for Engaging in Global Education and Research

Box 3-1 (continued) The Integrated Global Action Plan for the Prevention and Control of Pneumonia and Diarrhoea20 In 2013, the World Health Organization (WHO), the United Nations Children’s Fund (UNICEF), and partners published Ending Preventable Child Deaths From Pneumonia and Diarrhoea by 2025: The Integrated Global Action Plan for Pneumonia and Diarrhoea (GAPPD), calling for a reduction in deaths from pneumonia to fewer than 3 children per 1,000 live births, and from diarrhea to less than 1 child in 1,000, by 2025. The report provides an integrated framework of key interventions to prevent and treat pneumonia and diarrhea in children younger than 5 years. An accompanying Lancet series in childhood pneumonia and diarrhea was published in 2013 and provided evidence to support integrated control efforts. Every Newborn: An Action Plan to End Preventable Deaths21 In 2014, UNICEF and WHO launched the Every Newborn Action Plan and an accompanying Lancet newborn series, calling for an end to preventable newborn deaths and stillbirths by 2035. Every Newborn Action Plan aims for all countries to reach the target of 10 or fewer newborn deaths per 1,000 live births and continue to reduce death and disability, ensuring that no newborn is left behind; and for all countries to reach the target of 10 or fewer stillbirths per 1,000 total births and continue to close equity gaps. Early Childhood Development22–24 The Lancet published a series on early childhood development in 2007, 2011, and 2016. The various series aim to identify progress, gaps, and priorities in addressing factors affecting the estimated 250 million children younger than 5 years in low- and middle-income countries who fail to reach their developmental potential because of poverty, poor health, malnutrition, and unstimulating home environments. Adolescent Health and Commission on Adolescent Health and Well-being25 There has been increasing focus on adolescent health in recent years as a neglected global issue and priority for action. This Lancet series, published in 2012, pointed to the unaddressed burden of morbidity and mortality across the world and limited interventions within the health system. A 2016 Lancet commission report26 presents an integrated framework for addressing the shifting determinants of health and health needs of youth worldwide in synchrony with the SDGs.

Poverty is a substantial barrier that affects all levels of care; much of the burden of maternal and child mortality and ill health is concentrated among the poorest populations in countries of sub-Saharan Africa and South Asia. On average, children from the poorest households are 1.9 times as likely to die before the age of 5 years as children from the richest households.5 In Figure 3-2, data from Pakistan illustrate the considerable differences in coverage of key interventions between the poorest and wealthiest households.28 The close link between poverty and undernutrition is also well recognized. Estimates suggest that almost 45% of all younger-than-5 child deaths may be associated with undernutrition, as evidenced by stunting and wasting (see Appendix C for both terms) as

PGCH_ch03_043-060.indd 48

8/20/18 7:56 AM

49 Chapter 3: Positive Strategies in Achieving Health for All Children: An Equity Framework

Family planning need satisfied Skilled antenatal care provider Four or more antenatal care visits Skilled birth attendant Early initiation of breastfeeding Insecticide-treated bednet for mother and child Diphtheria, pertussis, and tetanus immunisation Measles immunisation Retinol in past 6 months Oral rehydration therapy Care-seeking for pneumonia 0

10

20

30

40

50

60

70

80

90

100

Coverage (%) 1: poorest 20% 2

3 4

5: richest 20%

Figure 3-2. Differences in Coverage of Key Interventions by Wealth Quintiles Data from the 2006 Pakistan Demographic and Health Survey. Coverage levels are shown for the poorest (white circles) to richest (black circles) quintiles. The longer the line between the two groups the greater the inequality. From Bhutta ZA, Hafeez A, Rizvi A, et al. Reproductive, maternal, newborn, and child heath in Pakistan: challenges and opportunities. Lancet. 2013;381(9884):2207–2218, with permission from Elsevier.

well as concomitant micronutrient deficiencies.17 The issues of stunting and wasting have become increasingly concerning due to the global effects of climate change, economic crises, and unprecedented increases in food prices.29 Although the rich-poor gap remains unacceptably wide, data show that in many regions, the poorest households have observed greater declines in youngerthan-5 mortality than the richest.9 Intervention coverage—the proportion of a population in need of an intervention that actually receives it (see Appendix C)— has also increased at a faster rate among the poorest quintiles, as measured by the composite coverage index (CCI), a weighted average of 8 long-standing interventions across the continuum of reproductive, maternal, newborn, and child health care (Figure 3-3).9 The interventions that make up the CCI include demand for family planning satisfied, at least one antenatal care visit, skilled birth attendance, 3 immunization indicators (diphtheria-tetanus-pertussis, tuberculosis, and first dose of measles), oral rehydration therapy for diarrhea, and care seeking for pneumonia. Since 2000, Liberia has achieved the biggest reductions in both absolute and relative CCI inequalities, with Bolivia, Cambodia, and Sierra Leone also showing exceptional progress.9

PGCH_ch03_043-060.indd 49

8/20/18 7:56 AM

50 Part 1: Operating Principles for Engaging in Global Education and Research

80

Trends in the Composite Coverage Index, National and Poorest and Richest Quintile, 47 Countdown Countries

60 40 20 1994

1996

1998

2000

2002

2004

2006

2008

2010

2012

2014

Composite Coverage Index Coverage (%) National 40

Poorest quintile

Richest quintile

Trends in Absolute and Relative Inequality in the Composite Coverage Index

30 20 10 1994

1996

1998

2000

2002

2004

2006

2008

2010

2012

2014

Composite Coverage Index Coverage (%) Absolute inequality Relative inequality (slope index of inequality) (concentration index)

Figure 3-3. Greater Data Availability Permits Global Tracking of Declining Inequalities From United Nations Children’s Fund, World Health Organization. Countdown to 2015: A Decade of Tracking Progress for Maternal, Newborn and Child Survival. The 2015 Report. Geneva, Switzerland: World Health Organization Press; 2015. http://www.countdown2015mnch.org/documents/2015Report/Countdown_ to_2015_final_report.pdf. Accessed June 18, 2018. © Copyright UNICEF and World Health Organization, 2015.

Figure 3-4 illustrates the inequities in coverage of key evidence-based maternal and child health interventions across the major Countdown to 2015 countries (the 75 countries with more than 95% of the current burden of maternal and child mortality).9 It is clear that interventions that are delivered through outreach strategies at the community level (eg, immunizations) do achieve high coverage, whereas progress is limited for interventions that require access to fixed health facilities or repeat contacts with a health professional, such as skilled birth attendance or attendance of more than one antenatal care visit. A disproportionately high burden of mortality is also observed among those who reside in rural and remote areas with limited access to quality health services. Children living in rural areas are 1.7 times as likely to die before the age of 5 years as children from urban areas.5 However, proximity to health services in urban settings does not ensure access. A sizeable proportion of deaths also occur among the urban poor living in slum conditions with limited social support networks and poor living conditions. Other determinants, such as environmental factors (ie, overcrowding, poor air quality and sanitary conditions), may be much worse in urban slums than in many rural populations.29

PGCH_ch03_043-060.indd 50

8/20/18 7:57 AM

PGCH_ch03_043-060.indd 51

Median national coverage of select interventions, 75 Countdown countries, most recent survey, 2009 or later (%) Prepregnancy

Pregnancy

Birth

Postnatal

Infancy

Country reporting data Childhood

Water and sanitation

100

75

25

De pl ma an n ni d f ng or s fa (a An atis mil t l t fie y ea en d In te st at on al of rmi m tte (at An e v care al nt lea te isi ar p s n t) ia re t f at o Ne for ven ur al c on pre tiv vis are at gn e t its al an re ) te t atm ta w Sk nu om en ille s p en t d at ro te te nd ct io Po an n st ta na td ta e lv liv isi er tf y Po o st rm n Ea a o ta rly th lv er in isi Ex s iti tf clu at o i on rb siv ab e of br ie br ea s ea stf s t ee fe ed di ng in g (< 6 I n m se tr o Di mi od nt p s hs im hth olid ucti ) o m Fir u eri or n o st niz a-t so f s do at et ft f ol se ion anu oo id, m (t s- ds ea hr pe sle ee rt Ha s i do uss em m se is (im o m s p m hi un ) un us iza i i n z Vi a fl tio t ta io ue n m n n in th za A re e t su e yp pp do e Ch le se b in ild (t me s) se re w nt c n o a Ca tici sle do tio re de ep se n se -t in s) Fir ek re g st in ate un -li g ne fo d n de an of r s ets r tim pn ym Or al al eu pto re ar m m hy ia on s lt dr re ia Im at at pr io m n ov en sa ed ta lts dr tre in a k tm in Im g en pr w ov t at er ed so sa ur ni ce ta tio s n fa cil iti es

0

Figure 3-4. Coverage of Interventions Varies Across the Continuum of Care

8/20/18 7:57 AM

51

Analysis is restricted to countries where at least 75% of the population is at risk of malaria and where a substantial proportion (50% or more) of malaria cases is due to Plasmodium falciparum (n = 44) or where 50%–74% of the population is at risk of malaria and where a substantial proportion (50% or more) of malaria cases is due to P falciparum (n = 8). Note: Figure excludes data on Rwanda for 2014–2015. Source: Immunization rates, World Health Organization (WHO) and United Nations Children’s Fund (UNICEF); postnatal visit for mothers and postnatal visits for babies, Saving Newborn Lives analysis of Demographic and Health Surveys and Multiple Indicator Cluster Surveys; improved water and sanitation, WHO and UNICEF Joint Monitoring Programme for Water Supply and Sanitation; all other indicators, UNICEF global database, July 2015, based on Demographic and Health Surveys, Multiple Indicator Cluster Surveys and other national surveys. From United Nations Children’s Fund, World Health Organization. Countdown to 2015: A Decade of Tracking Progress for Maternal, Newborn and Child Survival. The 2015 Report. Geneva, Switzerland: World Health Organization Press; 2015. http://www.countdown2015mnch.org/documents/2015Report/Countdown_to_2015_final_report.pdf. Accessed June 18, 2018. © Copyright UNICEF and World Health Organization, 2015. a

Chapter 3: Positive Strategies in Achieving Health for All Children: An Equity Framework

50

52 Part 1: Operating Principles for Engaging in Global Education and Research

The substantial effect of poverty on the lives of women and children is interlinked with issues of gender equity and female empowerment. Maternal education is a strong determinant of child survival; children of mothers who lack education are 2.8 times as likely to die before the age of 5 years as children whose mothers have secondary or higher education.5 Closely linked with female empowerment and sociocultural factors are issues of fertility and population growth. These significant determinants of maternal and child health have been adversely affected by the lack of attention and funding for reproductive health care and family planning globally. Crises, either war or natural disasters, can abruptly alter the ability of health systems to adequately address ongoing health needs and the increase in health care usage by the affected population (Box 3-2). Box 3-2. In Focus: Health in Humanitarian and Conflict Settings Conditions of conflict, displacement, and disaster can severely compromise essential components of health systems, increasing the risk of maternal and child deaths. Younger-than-5 mortality in fragile contexts is nearly twice as high as the rest of the world.5 Among the 20 countries with the highest younger-than-5 mortality rate, 10 are included on the World Bank list of fragile situations.5 Seventy-six percent of countries with a high burden of maternal mortality (those with maternal mortality ratio $300) are defined as fragile states.30 And the estimated lifetime risk of maternal mortality in such settings is an alarming 1 in 54.30 Disruptions in the health care infrastructure and increased exposure to stress, food shortages, and infectious diseases can cause a dramatic rise in deaths from preventable causes.31 Coverage rates of interventions in humanitarian crises are often unknown because the denominator of populations in need is difficult to establish or continuously changing. Adolescent pregnancy and violence against women are also common in conflict situations, with a negative effect on maternal and newborn health outcomes.31 The Syrian Arab Republic illustrates the paradox of crisis conditions (escalating health needs in the face of deteriorating health systems). Currently, 13.1 million Syrians are in need of humanitarian assistance.32 An estimated 6.6 million inhabitants are internally displaced, 1 in 3 schools are damaged or destroyed, and 6.3 million people are food insecure, with an additional 4 million at risk for food-insecurity.32 The 7-year-old Syrian conflict has led to increased mental health needs, trauma cases, reproductive health issues, and communicable and noncommunicable disease outbreaks.33 Progress in Syria toward all 12 MDGs has reversed.34 Despite an increased burden of disease, the World Health Organization reported 192 security incidents affecting health facilities in 2017 alone, and more than half of Syria’s health professionals have fled the country or been killed.32,35 Roughly 5.6 million Syrians have taken refuge outside the country, causing strain on the health systems of neighboring regions.32 Within the country, the armed conflict has made access to populations challenging. Two-point-three million people continue to live in areas that are hard to reach, of which nearly 413,920 are in besieged locations.32 The experience of the Syrian Arab Republic highlights the need for intensified and targeted strategies to protect families, women, and children affected by crisis conditions. The 2015 report of the independent Expert Review Group on Information and Accountability for Women’s and Children’s Health identifies humanitarian and fragile settings as a major new priority for the international community.36 If progress is to be achieved in such contexts, it will be essential to strengthen basic health care infrastructure; maintain coverage of proven, high-impact interventions; and ensure independent monitoring and accountability.

PGCH_ch03_043-060.indd 52

8/20/18 7:57 AM

53 Chapter 3: Positive Strategies in Achieving Health for All Children: An Equity Framework

Evidence-Based Interventions and Strategies to Reduce Inequities There are key preventive, promotive, and curative interventions that can significantly improve rates of younger-than-5 and maternal survival (Table 3-1). The Lancet “every newborn” series suggests that increased coverage and quality of interventions across the continuum of care by 2025 could avert 71% of neonatal deaths, 33% of stillbirths, and 54% of maternal deaths per year.37 The Lancet diarrhea and pneumonia series indicates that scaling up coverage of vaccines to 90% and preventive measures (eg, exclusive breastfeeding, community case management, oral rehydration solution and zinc) to 80% in the 75 Countdown to 2015 countries could avert 95% of diarrheal deaths and 67% of pneumonia deaths in children younger than 5 years by 2025.38 Although the effectiveness of existing interventions is well recognized, there are several bottlenecks with regard to scaling up intervention coverage. Overcoming these bottlenecks involves implementing appropriate delivery platforms for scale-up, especially in circumstances in which the health workforce is limited; removing financial barriers to accessing health services; and addressing gaps in quality of care within and across health facilities. Table 3-1. Essential Interventions Across the Life Course Life Course

Interventions

Peri-conceptual

Folic acid supplementation or fortification

Pregnancy

Calcium supplementation Balanced protein energy supplementation Multiple micronutrient supplementation Basic antenatal care Management of chronic diseases and infections during pregnancy

Intrapartum and immediate postpartum

Skilled birth attendance Emergency obstetric care Induction of labor to prevent births at or beyond 41 weeks’ gestation Immediate essential newborn care Clean birth practices and cord care Neonatal resuscitation

Neonatal

Early initiation of breastfeeding Thermal care including kangaroo mother care Prevention and management of neonatal sepsis and other infections Addressing neonatal jaundice

Infancy and childhood

Promotion of exclusive breastfeeding until 6 months Appropriate complementary feeding for 6–24 months Oral rehydration solution and zinc for treatment of diarrhea Antibiotics for dysentery Case management of pneumonia (antibiotics) Insecticide-treated materials or indoor residual spraying Case management of malaria Water, sanitation, and hygiene interventions Vitamin A supplementation for children younger than 5 years Preventive zinc supplementation Vaccines including Haemophilus influenzae type b, measles, diphtheriapertussis-tetanus, rotavirus, pneumococcal Management of severe and moderate malnutrition

PGCH_ch03_043-060.indd 53

8/20/18 7:57 AM

54 Part 1: Operating Principles for Engaging in Global Education and Research

Community Health Workers: Improving Accessibility of Care The global shortage of skilled health workers has been a critical barrier to effective intervention coverage, especially in low-resource and remote settings. Collectively, the Countdown to 2015 countries have an estimated median of 10.2 physicians, nurses, and midwives per 10,000 people, and three-quarters are below the WHO benchmark of 22.8 per 10,000.9 Task shifting (delegation of tasks to a less specialized cadre of health workers) is a strategy that has been successfully implemented in several countries to increase access to high-impact interventions across the continuum of care. The use of community health workers (CHWs) who are given basic health training has been shown to yield positive results in diverse settings, especially in accessing maternal care and management of malaria and HIV. The roles and responsibilities of CHWs have been highly varied across programs and countries. Trials have shown a growing range of effective interventions delivered by CHWs that can significantly improve neonatal, child, and maternal health outcomes. These include behavioral interventions to promote healthy practices; preventive interventions, such as immunization; and more complex tasks, such as case management of childhood illnesses (eg, pneumonia, diarrhea, malaria). In addition to increasing the availability of health care, CHWs are well positioned to respond to local cultural and societal norms and to foster the acceptability and uptake of essential interventions. However, to be effective, CHWs must be appropriately trained, supervised, and supported with a consistent and reliable supply of key commodities. As discussed in Chapter 1, community-based intervention packages delivered by CHWs have shown significant reductions in maternal morbidity, neonatal mortality and morbidity, and stillbirths.39,40 They are associated with increased health care seeking, early initiation of breastfeeding, use of clean delivery kits, higher rates of institutional deliveries, and uptake of immunization.39,40 Home visits by CHWs in both higher and lower income countries have also been shown to reduce the risk of neonatal death and stillbirth and significantly improve coverage of antenatal and neonatal practices such as immunization, attendance of antenatal care visits, clean umbilical cord care, early breastfeeding, and delayed bathing.41 The evidence for women’s support groups identifies participatory learning and action as a cost-effective method of improving maternal and neonatal survival in low-resource settings.42 The effect of community-based strategies on addressing childhood diarrhea and pneumonia is also well recognized. Furthermore, integrated management of childhood illnesses has shown benefits in health service quality, mortality reduction, and health care cost savings, with promising case studies from Tanzania and Bangladesh.43–45

Financial Incentive Programs to Reduce Poverty and Improve Health Financial incentive programs are widely implemented strategies to alleviate poverty, improve access to health services, and increase intervention coverage. Support platforms that provide direct or indirect monetary incentives to households have been employed for decades in Latin America and sub-Saharan Africa, and more recently in South Asia.46 Financial incentive programs include

PGCH_ch03_043-060.indd 54

8/20/18 7:57 AM

55 Chapter 3: Positive Strategies in Achieving Health for All Children: An Equity Framework

c­ onditional/unconditional cash transfers, conditional/unconditional voucher schemes, conditional/unconditional microcredit, user fee removal, and health insurance. Of these various strategies, the most pronounced effects have been attained from the removal of user fees for access to health services.46 Financial incentive programs targeting child health commonly focus on immunization, health care use, breastfeeding practices, management of diarrheal diseases, and other preventive health interventions, including vitamin A and iron supplementation and preventive deworming.46 Many of these programs are conditional on keeping immunization up-to-date, enrolling in and attending school, attending preventive health care visits, and participating in health education activities.46

Looking Beyond Survival: Addressing Inequities in Early Childhood Development An estimated 250 million children in low- and middle-income countries are failing to reach their developmental potential due to poverty, poor health, undernutrition, and inadequate levels of stimulation.24 Child development encompasses interdependent domains, including sensory-motor, cognitive, and social-­ emotional development.22 Developmental deficits are likely to negatively affect academic performance and limit productivity and opportunities in adulthood, perpetuating an intergenerational cycle of poverty.22 Risks to development from poverty and stunting are estimated to result in approximatey a 25% annual reduction in income-earning potential in adulthood.24 In recent years, there has been an increased focus on implementing programs to address inequities in early child development. Such programs encompass early learning and education, child health and nutrition interventions, parental support, child protection, and/or psychosocial stimulation. Low-cost, universal interventions delivered at school, home, or community-based centers have shown substantial improvements in child health behavioral, growth, and developmental outcomes.47–51 Authors of the 2011 Lancet series on early childhood development conclude that integrated interventions targeting the many risks to which vulnerable children are exposed in early life are the most effective and cost-efficient strategies to reduce inequities in development52 (see also chapters 1 and 5).

Setting Research Priorities to Achieve Equity Gains Current funding for health research largely targets diseases prevalent in high-­ income countries and tends to favor research on new interventions.53 Although basic science research is undoubtedly important, there are existing effective interventions that could significantly reduce the burden of maternal and child deaths, if made universally available. Likewise, the beneficiaries of new interventions are often those who can afford to receive them, further increasing levels of inequity.53 The Child Health and Nutrition Research Initiative (CHNRI) was developed in response to the existing mismatch between research expenditure and the global burden of disease.53 The approach was designed to assist policy makers and investors to systematically identify research gaps and examine the potential risks and benefits of investing in different research options. It is the most frequently applied

PGCH_ch03_043-060.indd 55

8/20/18 7:57 AM

56 Part 1: Operating Principles for Engaging in Global Education and Research

method of setting health research priorities in the recent past and has been applied to a wide range of topics, including, but not limited to, birth asphyxia, childhood diarrhea, and integrated community case management.54–57 The CHNRI method comprises 4 stages: (1) defining the context and criteria for priority setting with input from investors and policy makers; (2) listing and scoring of research investment options by technical experts using the proposed criteria; (3) weighting the criteria according to wider societal values with input from other stakeholders; and (4) calculating overall research priority scores and average expert agreement to determine the top-ranking research options.58 Evaluating effect on equity is central to the CHNRI approach; it is one of the predetermined criteria against which research questions are often measured. We scanned the relevant CHNRI literature and identified top-ranking research questions that also ranked highest for their effect on equity.55,56,59–68 These questions are presented in Box 3-3, with duplicates removed. The list of questions reflects major causes of newborn and child deaths, including intrapartum-related complications, infectious diseases, and malnutrition. Box 3-3. Select Research Priorities to Promote Equity in Child Survival and Health • What is the coverage of existing treatment programs for infants younger than 6 months with severe acute malnutrition? • Evaluate the effectiveness and cost of making a bag-and-mask accessible to trained individuals or teams attending births in reducing neonatal mortality. • Can simpler/cheaper/more robust technology be developed for neonatal resuscitation (eg, bag-and-mask, suction devices) and resuscitation training (eg, resuscitation dummies), and more feasible models of maintaining clinical competency for resuscitation? • Does the community-led total sanitation approach lead to decreased diarrhea risk? • Study whether coverage by antibiotic treatment can be greatly expanded in safe and effective ways if it was administered by community health workers. • What is the effectiveness of zinc supplementation on the outcome and incidence of diarrhea in the community? • What strategies can improve the use of antenatal care, skilled birth attendants, prevention of mother-to-child transmission of HIV, and postnatal care by adolescents in resource-poor settings? • What is the feasibility, effectiveness, and cost of approaches to increase coverage of clean delivery practices in facilities and homes? • What are effective delivery strategies to ensure that the most vulnerable individuals receive critical reproductive, maternal, newborn, child, and adolescent health services? • What effective strategies can be developed to modify individuals’ behavior to reduce their environmental exposures to smoke stoves? • Identification of current behaviors and barriers and supports for optimal home care practices, including care seeking for illness.

PGCH_ch03_043-060.indd 56

8/20/18 7:57 AM

57 Chapter 3: Positive Strategies in Achieving Health for All Children: An Equity Framework

Conclusions Notwithstanding recent global progress, there is a persistent global burden of child mortality with close to 6 million deaths of children younger than 5 years annually. The vast majority are in low- and middle-income countries, and while there are major differences between countries, the most striking inequities are within countries, between populations on the basis of factors such as poverty, residence, social empowerment, and ethnicity. Gender-based inequities and lack of women’s empowerment are also important determinants. While these challenges are pervasive, there are important innovations and developments that allow us to address inequities systematically. These include innovations to address poverty gaps, human resource gaps through deployment of CHWs, and community mobilization strategies. Measuring and tracking inequities are a critical component of the monitoring and accountability needed if we are to achieve the SDGs for health.

References 1. UN General Assembly. United Nations Millennium Declaration. Resolution adopted by the General Assembly. http://www.un.org/millennium/declaration/ares552e.htm. Published September 8, 2000. Accessed June 18, 2018 2. You D, Hug L, Ejdemyr S, et al. Global, regional, and national levels and trends in under-5 mortality between 1990 and 2015, with scenario-based projections to 2030: a systematic analysis by the UN Inter-agency Group for Child Mortality Estimation. Lancet. 2015;386(10010):2275–2286 3. Alkema L, Chou D, Hogan D, et al. Global, regional, and national levels and trends in maternal mortality between 1990 and 2015, with scenario-based projections to 2030: a systematic analysis by the UN Maternal Mortality Estimation Inter-Agency Group. Lancet. 2016;387(10017):462–474 4. Jones G, Steketee RW, Black RE, Bhutta ZA, Morris SS; Bellagio Child Survival Study Group. How many child deaths can we prevent this year? Lancet. 2003;362(9377):65–71 5. United Nations Children’s Fund. Committing to Child Survival: A Promise Renewed. Progress Report 2015. New York, NY: United Nations Children’s Fund; 2015 6. United Nations. Transforming our world: the 2030 Agenda for Sustainable Development. https:// sustainabledevelopment.un.org/post2015/transformingourworld. Accessed June 18, 2018 7. Firoz T, Chou D, von Dadelszen P, et al. Measuring maternal health: focus on maternal morbidity. Bull World Health Organ. 2013;91(10):794–796 8. Liu L, Oza S, Hogan D, et al. Global, regional, and national causes of child mortality in 200013, with projections to inform post-2015 priorities: an updated systematic analysis. Lancet. 2015;385(9966):430–440 9. United Nations Children’s Fund, World Health Organization. Countdown to 2015: A Decade of Tracking Progress for Maternal, Newborn and Child Survival. The 2015 Report. Geneva, Switzerland: World Health Organization Press; 2015. http://www.countdown2015mnch.org/ documents/2015Report/Countdown_to_2015_final_report.pdf. Accessed June 18, 2018 10. Liu L, Black RE, Cousens S, Mathers C, Lawn JE, Hogan DR. Causes of child death: comparison of MCEE and GBD 2013 estimates. Lancet. 2015;385(9986):2461–2462 11. Lawn JE, Blencowe H, Oza S, et al. Every Newborn: progress, priorities, and potential beyond survival. Lancet. 2014;384(9938):189–205 12. Blencowe H, Cousens S, Jassir FB, et al. National, regional, and worldwide estimates of stillbirth rates in 2015, with trends from 2000: a systematic analysis. Lancet Glob Health. 2016;4(2):e98–e108 13. Kassebaum NJ, Bertozzi-Villa A, Coggeshall MS, et al. Global, regional, and national levels and causes of maternal mortality during 1990–2013: a systematic analysis for the Global Burden of Disease Study 2013. Lancet. 2014;384(9947):980–1004

PGCH_ch03_043-060.indd 57

8/20/18 7:57 AM

58 Part 1: Operating Principles for Engaging in Global Education and Research

14. Bryce J, Coitinho D, Darnton-Hill I, Pelletier D, Pinstrup-Andersen P; Maternal and Child Undernutrition Study Group. Maternal and child undernutrition: effective action at national level. Lancet. 2008;371(9611):510–526 15. SUN Movement Secretariat. SUN Movement Annual Progress Report. September 2015. http:// docs.scalingupnutrition.org/wp-content/uploads/2015/10/SUN_AnnualReport2015_EN.pdf. Accessed June 19, 2018 16. World Health Organization. Nutrition. Global targets 2025: poster. http://www.who.int/nutrition/ topics/nutrition_globaltargets2025/en. Accessed June 19, 2018 17. Black RE, Victora CG, Walker SP, et al. Maternal and child undernutrition and overweight in lowincome and middle-income countries. Lancet. 2013;382(9890):427–451 18. International Food Policy Research Institute. Global Nutrition Report 2017: Nourishing the SDGs. Washington, DC: International Food Policy Research Institute; 2017 19. Every Woman Every Child. Every Woman Every Child’s Global Strategy for Women’s, Children’s and Adolescents’ Health. http://www.everywomaneverychild.org/global-strategy-2. Accessed March 13, 2018 20. United Nations Children’s Fund, World Health Organization. Ending Preventable Child Deaths From Pneumonia and Diarrhoea by 2025: The Integrated Global Action Plan for Pneumonia and Diarrhoea (GAPPD). Geneva, Switzerland: World Health Organization; 2013. http://apps.who.int/ iris/bitstream/10665/79200/1/9789241505239_eng.pdf?ua51. Accessed June 19, 2018 21. United Nations Children’s Fund, World Health Organization. Every Newborn Action Plan. Reaching the every newborn national 2020 milestones: county progress, plans and moving forward. World Health Organization Web site. http://www.who.int/maternal_child_adolescent/newborns/ every-newborn/en. Accessed June 19, 2018 22. Series: Early Child Development in Developing Countries, 2007. Lancet. 2007;369 23. Series: Early Child Development in Developing Countries, 2011. Lancet. 2011;378 24. Series: Advancing Early Child Development: from Science to Scale. Lancet. 2016;389 25. Sawyer SM, Afifi RA, Bearinger LH, et al. Adolescence: a foundation for future health. Lancet. 2012;379(9826):1630–1640 26. Patton GC, Sawyer SM, Santelli JS, et al. Our future: a Lancet commission on adolescent health and wellbeing. Lancet. 2016;387(10036):2423–2478 27. Marmot M. Closing the health gap in a generation: the work of the Commission on Social Determinants of Health and its recommendations. Glob Health Promot. 2009;suppl 1:23–27 28. Bhutta ZA, Hafeez A, Rizvi A, et al. Reproductive, maternal, newborn, and child heath in Pakistan: challenges and opportunities. Lancet. 2013;381(9884):2207–2218 29. Bhutta ZA, Black RE. Global maternal, newborn, and child health—so near and yet so far. N Engl J Med. 2013;369(23):2226–2235 30. World Health Organization, United Nations Children’s Fund, United Nations Population Fund, World Bank Group, United Nations Populations Division. Trends in Maternal Mortality: 1990 to 2015. Estimates by WHO, UNICEF, UNFPA, World Bank Group, and the United Nations Population Division. Geneva, Switzerland: World Health Organization; 2015. http://apps.who.int/ iris/bitstream/10665/194254/1/9789241565141_eng.pdf?ua51. Accessed June 19, 2018 31. United Nations Children’s Fund, World Health Organization. Fulfilling the Health Agenda for Women and Children. The 2014 Report. Geneva, Switzerland: World Health Organization; 2014. http://www.countdown2015mnch.org/documents/2014Report/Countdown_to_2015Fulfilling%20the%20Health_Agenda_for_Women_and_Children-The_2014_ReportConference_Draft.pdf. Accessed June 19, 2018 32. United Nations Office for the Coordination of Humanitarian Affairs. Syrian Arab Republic: The Humanitarian Crisis in Syria as of 23 April 2018. https://reliefweb.int/sites/reliefweb.int/files/ resources/Syria%20Crisis_180423_V9.pdf. Accessed May 2, 2018 33. World Health Organization. Humanitarian Health Action. WHO’s remarks on the continuing crisis in Syria. http://www.who.int/hac/crises/syr/releases/27october2015/en. Published October 27, 2015. Accessed June 19, 2018 34. UN Office for the Coordination of Humanitarian Affairs. About the crisis. http://www.unocha. org/syrian-arab-republic/syria-country-profile/about-crisis. Accessed December 26, 2015

PGCH_ch03_043-060.indd 58

8/20/18 7:57 AM

59 Chapter 3: Positive Strategies in Achieving Health for All Children: An Equity Framework

35. World Health Organization. Tracking attacks on health workers—don’t let them go unnoticed. http://www.who.int/features/2015/healthworkers-in-emergencies/en. Published December 2015. Accessed June 19, 2018 36. Independent Expert Review Group on Information and Accountability for Women’s and Children’s Health. Every Woman, Every Child, Every Adolescent: Achievements and Prospects. The Final Report of the Independent Expert Review Group on Information and Accountability for Women’s and Children’s Health. Geneva, Switzerland: World Health Organization; 2015. http://apps.who. int/iris/handle/10665/183585. Accessed June 19, 2018 37. Bhutta ZA, Das JK, Bahl R, et al. Can available interventions end preventable deaths in mothers, newborn babies, and stillbirths, and at what cost? Lancet. 2014;384(9940):347–370 38. Bhutta ZA, Das JK, Walker N, et al. Interventions to address deaths from childhood pneumonia and diarrhoea equitably: what works and at what cost? Lancet. 2013;381(9875):1417–1429 39. Lassi ZS, Haider BA, Bhutta ZA. Community-based intervention packages for reducing maternal and neonatal morbidity and mortality and improving neonatal outcomes. Cochrane Database Syst Rev. 2010;(11):CD007754 40. Lewin S, Munabi-Babigumira S, Glenton C, et al. Lay health workers in primary and community health care for maternal and child health and the management of infectious diseases. Cochrane Database Syst Rev. 2010;(3):CD004015 41. Gogia S, Sachdev HS. Home visits by community health workers to prevent neonatal deaths in developing countries: a systematic review. Bull World Health Organ. 2010;88(9):658–666B 42. Prost A, Colbourn T, Seward N, et al. Women’s groups practising participatory learning and action to improve maternal and newborn health in low-resource settings: a systematic review and metaanalysis. Lancet. 2013;381(9879):1736–1746 43. Ahmed HM, Mitchell M, Hedt B. National implementation of Integrated Management of Childhood Illness (IMCI): policy constraints and strategies. Health Policy. 2010;96(2):128–133 44. Armstrong Schellenberg JR, Adam T, Mshinda H, et al. Effectiveness and cost of facility-based Integrated Management of Childhood Illness (IMCI) in Tanzania. Lancet. 2004;364(9445):1583– 1594 45. Arifeen SE, Hoque DM, Akter T, et al. Effect of the Integrated Management of Childhood Illness strategy on childhood mortality and nutrition in a rural area in Bangladesh: a cluster randomised trial. Lancet. 2009;374(9687):393–403 46. Bassani DG, Arora P, Wazny K, Gaffey MF, Lenters L, Bhutta ZA. Financial incentives and coverage of child health interventions: a systematic review and meta-analysis. BMC Public Health. 2013;13(suppl 3):S30 47. Kristjansson EA, Robinson V, Petticrew M, et al. School feeding for improving the physical and psychosocial health of disadvantaged elementary school children. Cochrane Database Syst Rev. 2007;(1):CD004676 48. Walker SP, Chang SM, Powell CA, Simonoff E, Grantham-McGregor SM. Effects of psychosocial stimulation and dietary supplementation in early childhood on psychosocial functioning in late adolescence: follow-up of randomised controlled trial. BMJ. 2006;333(7566):472 49. Barlow J, Smailagic N, Ferriter M, Bennett C, Jones H. Group-based parent-training programmes for improving emotional and behavioural adjustment in children from birth to three years old. Cochrane Database Syst Rev. 2010;(3):CD003680 50. Barlow J, Bennett C, Midgley N, Larkin SK, Wei Y. Parent-infant psychotherapy for improving parental and infant mental health. Cochrane Database Syst Rev. 2015;1:CD010534 51. D’Onise K, McDermott RA, Lynch JW. Does attendance at preschool affect adult health? A systematic review. Public Health. 2010;124(9):500–511 52. Engle PL, Fernald LC, Alderman H, et al. Strategies for reducing inequalities and improving developmental outcomes for young children in low-income and middle-income countries. Lancet. 2011;378(9799):1339–1353 53. Rudan I, Gibson J, Kapiriri L, et al. Setting priorities in global child health research investments: assessment of principles and practice. Croat Med J. 2007;48(5):595–604 54. Yoshida S. Approaches, tools and methods used for setting priorities in health research in the 21(st) century. J Glob Health. 2016;6(1):010507

PGCH_ch03_043-060.indd 59

8/20/18 7:57 AM

60 Part 1: Operating Principles for Engaging in Global Education and Research

55. Lawn JE, Bahl R, Bergstrom S, et al. Setting research priorities to reduce almost one million deaths from birth asphyxia by 2015. PLoS Med. 2011;8(1):e1000389 56. Wazny K, Zipursky A, Black R, et al. Setting research priorities to reduce mortality and morbidity of childhood diarrhoeal disease in the next 15 years. PLoS Med. 2013;10(5):e1001446 57. Wazny K, Sadruddin S, Zipursky A, et al. Setting global research priorities for integrated community case management (iCCM): results from a CHNRI (Child Health and Nutrition Research Initiative) exercise. J Glob Health. 2014;4(2):020413 58. Rudan I, Gibson JL, Ameratunga S, et al. Setting priorities in global child health research investments: guidelines for implementation of CHNRI method. Croat Med J. 2008;49(6):720–733 59. Rudan I, El Arifeen S, Bhutta ZA, et al. Setting research priorities to reduce global mortality from childhood pneumonia by 2015. PLoS Med. 2011;8(9):e1001099 60. Hindin MJ, Christiansen CS, Ferguson BJ. Setting research priorities for adolescent sexual and reproductive health in low- and middle-income countries. Bull World Health Organ. 2013;91(1):10–18 61. Bahl R, Martines J, Ali N, et al. Research priorities to reduce global mortality from newborn infections by 2015. Pediatr Infect Dis J. 2009;28(suppl 1):S43–S48 62. Fontaine O, Kosek M, Bhatnagar S, et al. Setting research priorities to reduce global mortality from childhood diarrhoea by 2015. PLoS Med. 2009;6(3):e41 63. Bahl R, Martines J, Bhandari N, et al. Setting research priorities to reduce global mortality from preterm birth and low birth weight by 2015. J Glob Health. 2012;2(1):010403 64. Dean S, Rudan I, Althabe F, et al. Setting research priorities for preconception care in low- and middle-income countries: aiming to reduce maternal and child mortality and morbidity. PLoS Med. 2013;10(9):e1001508 65. Morof DF, Kerber K, Tomczyk B, et al. Neonatal survival in complex humanitarian emergencies: setting an evidence-based research agenda. Confl Health. 2014;8:8 66. Yoshida S, Rudan I, Lawn JE, et al. Newborn health research priorities beyond 2015. Lancet. 2014;384(9938):e27–e29 67. Angood C, McGrath M, Mehta S, et al. Research priorities to improve the management of acute malnutrition in infants aged less than six months (MAMI). PLoS Med. 2015;12(4):e1001812 68. Sharma R, Buccioni M, Gaffey MF, et al. Setting an implementation research agenda for Canadian investments in global maternal, newborn, child and adolescent health: a research prioritization exercise. CMAJ Open. 2017;5(1):E82–E89

PGCH_ch03_043-060.indd 60

8/20/18 7:57 AM

61

CHAPTER 4

Epidemiology and Social Determinants of Global Health as the Basis for Education and Research Fabienne Laraque, MD, MPH Omolara Thomas Uwemedimo, MD, MPH, FAAP

abstract This chapter describes the importance of using standard data for ­decision-making at local and national levels on reportable diseases and conditions of public health significance. In addition, the chapter will provide an overview of the use of data to monitor interventions and detect outbreaks and emerging conditions. Lastly, this chapter will cover the importance of data, data sources, key indicators of childhood health, the role of millennium and sustainable goals, and training needs. In all health care settings, whether population based or institution specific, the importance of effective use of data for planning and monitoring cannot be overstated. Implementing interventions and programs, even those that are evidence based, without the benefit of a local needs assessment and continuous data monitoring may not succeed due to erroneous targeting and inability to monitor progress. To ensure that public health and clinical programs are targeted to the setting and population in which they will be implemented, standard data collection and analysis is critical. The use of standard indicators allows for comparison across countries or regions.

PGCH_ch04_061-080.indd 61

8/16/18 9:24 AM

62 Part 1: Operating Principles for Engaging in Global Education and Research

Teaching Points 1 Disease-specific mortality and disease case-fatality rates guide health

programs, facilities, and governments when allocating resources and prioritizing areas for investment.

2 Composite indicators are important in program planning, implementation,

and evaluation in the global child health context. Three of these indicators are quality-adjusted life years (QALYs), disability-adjusted life years (DALYs; the number of years of life lost and the number of years of life lived with disability), and health-­adjusted life expectancy (projected amount of years an individual will live in full health).

3 Indicators of child health, in particular younger-than-5 mortality, may serve as a barometer of society because child health is a result of numerous inputs and tends to be addressed last in a society, after the health needs of adult populations have been addressed.

4 Data sources used when planning for interventions include disease surveillance, surveys, geographic information system analysis, clinic and hospital medical records, disease registries, vital registries, needs assessments, and census data.

5 Limitations in data sets may be alleviated by integrating multiple data sources for a single population, a process known as triangulation.

6 Global health professionals should understand basic epidemiological

concepts, principles of disease surveillance, and the importance of reporting and using data to make decisions. Multiple training programs are ­available, although the most efficient training may be a master’s degree in public health.

Global Epidemiology of Child Health

Mortality Rates and Major Causes Overview

Remarkable strides have been made in reducing the number of deaths of children younger than 5 years from 12.4 million per year in 1990 to 5.9 million in 2015.1 About 80% of this reduction has resulted from reductions in 2 clusters of infectious disease burden, diarrheal illness and lower respiratory tract infections.1 Despite this achievement, the global childhood mortality rate did not attain the Millennium Development Goal of reducing mortality by two-thirds. In 2015, 50 of the 75 countries with the highest child mortality burden had not reached their Millennium Development Goal.2 Of the 240 million deaths that occurred from 1990 to 2015, 14 million children could have been saved, if this target had been met.2

PGCH_ch04_061-080.indd 62

8/16/18 9:24 AM

63 Chapter 4: Epidemiology and Social Determinants of Global Health as the Basis for Education and Research

Variations in Mortality Regional The overall progress in reducing deaths among children masks the extreme variability of those gains by world region, thus rendering where a child is born one of the strongest single predictors of younger-than-5 death. This reality is most strikingly exemplified by the slow progress in mortality reduction in sub-Saharan Africa, where almost 50% of deaths among children younger than 5 years occur.2,3 Sub-Saharan Africa had a decline in mortality among children younger than 5 years of 24% compared with all other regions with a decline of at least 50% in child mortality since 1990.3,4 According to the 2015 report from the United Nations Inter-Agency Group for Child Mortality Estimation, sub-Saharan Africa had a child mortality rate of 83 per 1,000 live births in 2015, while South Asia had the second-highest child mortality rate at 51 per 1,000 live births, representing a significant number of lives lost.3 In comparison, high-income countries, including Europe and the United States, have a child mortality rate of 6 per 1,000 live births.3 However, it is important to note that major inequities in child mortality exist in high-income countries. For example, in the United States, first-day death rates in low-income urban centers, the rural South, Appalachia, and Native American reservations are comparable to those in the world’s poorest countries.5 A major contributor to this disparity is preterm birth, attributable in large part to barriers in access to prenatal care and high rates of adolescent pregnancy.6,7

Age Large reductions in child mortality have often been isolated to the postneonatal period (ages 1–59 months). Currently, the first 28 days have been demonstrated to be the most dangerous period of a child’s life. Up to 45% of child mortality occurs in the neonatal period, which is expected to rise to 52% if evidence-based interventions are not implemented.8 These deaths, most commonly attributed to infections, asphyxia, and preterm birth, are largely preventable with low-cost interventions including kangaroo (skin-to-skin) mother care, antibiotics, early and exclusive breastfeeding, and hygienic cord care.9,10 Currently, 2.6 million deaths of newborns occur globally and are, in large part, secondary to poor quality of care over the continuum of care (antenatal, intrapartum, perinatal, and childbirth).3

Causes of Childhood Mortality

The direct causes of younger-than-5 mortality continue to be from largely preventable and treatable conditions. The most common causes of death in this age group are neonatal, specifically birth asphyxia, preterm birth, and sepsis, which currently account for 45% of all younger-than-5 deaths.1–3 The second leading cause is lower respiratory tract infections (13%).3 While pneumonia makes up a significant proportion of these deaths, due to limited diagnostic capabilities in low- and middle-income countries, there is frequent difficulty in confirming pneumonia as the cause of deaths secondary to severe respiratory symptoms.11,12 Diarrheal illness constitutes a major portion, 9%, of younger-than-5 deaths.3,12

PGCH_ch04_061-080.indd 63

8/16/18 9:24 AM

64 Part 1: Operating Principles for Engaging in Global Education and Research

Other major causes of mortality include malaria (7%), congenital anomalies (7%), injuries (5%), HIV/AIDS (2%), and measles (2%).3 It is important to note that the cause of death distribution of younger-than-5 mortality worldwide is dramatically different in specific regions. For example, malaria accounts for 18% of deaths in sub-Saharan Africa, while neonatal deaths only constitute 21% of deaths in the same region.3

Causes of Adolescent Mortality

At the other end of the spectrum, 1.4 million adolescents (aged 10–19 years) die every year due to violence, HIV, lower respiratory tract infections, road traffic injuries, and suicide. The leading cause of death in this age group globally is road traffic injury, save for adolescent females in the African region, which is due mostly to HIV.13 However, deaths of adolescents vary considerably by region. In the Americas, one-third of adolescent male deaths are due to interpersonal violence. Twenty percent of deaths among adolescent males in the Eastern Mediterranean region is due to war and conflicts. Suicide accounts for 1 of every 6 deaths among adolescent females in the Southeast Asia region, and 1 of every 6 deaths among adolescents in the African region is due to HIV.13 While deaths in this age group have steadily decreased, the number of deaths attributable to HIV has tripled since 2000, making HIV the second-highest cause of death in this age group. In contrast to the adolescent global mortality trends observed worldwide, deaths of adolescent males aged 15 to 19 years have increased in the Eastern Mediterranean region and the Americas due to war-related injuries and interpersonal violence, respectively. Of note, adolescent females aged 15 to 19 years are at high risk of mortality due to maternal causes across regions.13

Morbidity and Disease Burden Child Morbidity

Child morbidity (ie, illness, injury, or disability) has become an increasingly important measure of health status as more children are surviving past the early childhood years. Inclusion of focus on mortality and morbidity reflects concerns about the quality of life during childhood, as opposed to solely measuring child survival. One of the most widely used instruments to measure morbidity has been disability-adjusted life years (DALYs); the Global Burden of Disease study, led by Dr Christopher Murray, remains prominent as the largest study undertaken to measure morbidity globally. These data have been collected in the early 1990s, in the early 2000s, and as recently as 2013.5 Recent estimates from the Institute of Health Metrics and Evaluation suggest that about half of child morbidity among young children can be attributed to 3 conditions: iron deficiency anemia (25%), diarrheal illness (15%), and protein-energy malnutrition (10%).5,14 For school-aged children, morbidity is largely due to conduct disorder and intellectual disability, which may be a consequence of recurrent or chronic illnesses or malnutrition. In adolescents, most of the disease burden shifts to mental disorders and substance use and disability due to injuries, primarily through road traffic injuries.14

PGCH_ch04_061-080.indd 64

8/16/18 9:24 AM

65 Chapter 4: Epidemiology and Social Determinants of Global Health as the Basis for Education and Research

Disease Burden

An important concept in the discussion of the global burden of disease is demographic and epidemiological transitions (see Appendix C for terms). As countries become more affluent, the demographics of the population tend to change over time. Most low-income countries, compared with higher income nations, experience high fertility rates with high death rates and shortened life expectancy. Over time, with improved economic status and education, countries tend to experience decreases in the birth rates, more people living to older age, and longer life expectancy. If birth rates continue to drop dramatically, countries can enter a state of “contraction” in which there is a low death rate and very long life expectancy, all leading to a higher dependency ratio (ie, number of persons of older age dependent on the working population, as compared with the number of economically productive people in the region; see Appendix C). Along with these population changes, one may witness an epidemiological transition in which the causes of death change over time. Communicable diseases tend to constitute most mortality in low-income countries, as opposed to high-income countries, where death is mostly attributable to noncommunicable disease and/or injuries. In select cases, countries that have emerging economies (eg, Brazil, India, China), may experience a dual burden in which a significant proportion of the population is still experiencing communicable diseases, while a significant proportion of citizens also have high rates of noncommunicable disease.15

Social Determinants of Global Child Health As has been identified among vulnerable populations in the United States, social determinants of health are highly important in the discussion of mortality and morbidity. In most low- and middle-income countries, there tends to be a large amount of inequity between rural and urban populations as well as between the poorest and richest quintiles.16,17 Health inequities within some regions of the United States lead to health outcomes that mirror conditions seen globally, with the main unifying determinant being poverty. Although endemic in most resource-limited countries, almost 50% of young children in the United States also live below or near poverty, with 16 million children living in extreme poverty (ie, income ,50% of the Federal Poverty Level). As a major social determinant, poverty is inextricably tied to adverse health outcomes in childhood and negative effects on physical health, socioemotional development, and educational achievement across the life course. In turn, measuring income inequality and the relative contribution to health morbidity and mortality is critical. Measures such as the Gini coefficient use the Lorenz curve as a reference of percentage of total income earned by cumulative percentage of the population. In a perfectly equal society, the “poorest” 25% of the population earns 25% of the total income, while the “poorest” 50% of the population earns 50% of the total income, with the Lorenz curve on the path of the 45° line of equality. As inequality increases, the Lorenz curve deviates, which could be because of examples such as the “poorest” 25% of the population earning 10% of the total income or the “poorest” 50% of the

PGCH_ch04_061-080.indd 65

8/16/18 9:24 AM

66 Part 1: Operating Principles for Engaging in Global Education and Research

population earning only 20% of the total income. Other such measures include the Atkinson index and the generalized entropy index.18,19 Additional social determinants include place of residence, educational attainment, food/housing insecurity, and health literacy.20 These non-health factors play an important role in determining illness recognition, health-seeking behaviors, access to care, utilization of services, and quality of care received.17,20 For example, 2 people with hypertension may have significant differences in health service access and utilization due to different environments, rural versus urban. Rural areas may have a lower density of health care facilities and clinicians, both of which can lead to disparities in care.

Disease Surveillance and Data Needs

Basic Epidemiological Concepts When measuring disease, it is important to provide information not only on the frequency of disease but also the severity of disease.

Disease Frequency: Counts, Rates, and Role of Each Type of Measure

The most common measures of disease frequency are cumulative incidence, incidence density, and prevalence. Cumulative incidence refers to the number of new cases over the number of people at risk. Incidence density refers to the number of new cases per person-year and is a good measure of risk of disease. Prevalence refers to the number of people with a disease over a specified period.21

Disease Severity (Morbidity and Mortality)

Global health data on disease severity historically have primarily measured mortality, with fewer sources available for morbidity data.22 Mortality data are usually collected through death registration; in low- and middle-income countries, especially in rural settings, many deaths that occur at home may be missed. A commonly used method to gather data on these “missed” deaths is verbal autopsy, in which families and friends are asked about recent deaths and the symptoms of the deceased persons.23 Using the specific combination of symptoms reported and age and gender of the individual, verbal autopsy software24 has the capacity to create a list of probable causes for the death in order of likelihood. However, this may be of limited utility for individuals with nonspecific symptoms. In general, child mortality data are more readily available than adult mortality data. Important categorizations of mortality include disease-specific mortality, which can be helpful for health programs, facilities, and governments to guide allocation of resources and prioritize areas for investment. It is also important to identify the case fatality rate of diseases (eg, the number of deaths from a disease compared with the total number of persons with a disease over time).25 Diseases with higher case fatality rates may be prioritized by health systems and require more attention, even if a relatively small population is affected. Morbidity data center on measuring disability and are captured with much less regularity. One example is the World Health Organization (WHO) Disability

PGCH_ch04_061-080.indd 66

8/16/18 9:24 AM

67 Chapter 4: Epidemiology and Social Determinants of Global Health as the Basis for Education and Research

Assessment Schedule.26 This schedule uses the case disability ratio, which measures those with disability from disease, in a population of all diagnosed persons. The measurement of disability severity is quite subjective and measured on a scale from 0 (no disability) to 1.0 (death). More recent data have used composite indicators that measure mortality and morbidity in one value. The most common measures are health gap measures, or indicators to measure loss of healthy life.27 These include DALYs and quality-­ adjusted life years (QALYs). Disability-adjusted life years refer to the number of years of life lost and the number of years of life lived with disability.28 These can be reported as disease-specific mortality and diseases that cause the highest DALYs, which can be markedly different from the leading causes of death. In other words, “What ails you doesn’t necessarily kill you.” Quality-adjusted life years, on the other hand, have historically been used to measure patient preference, particularly as a denominator in cost utility and cost-effectiveness studies.29 Quality-adjusted life years measure the years of life lived in perfect health to years of life spent in the diseased state. The amount of QALYs assigned to specific diseases is calculated using population-based interviews to determine how poor the quality of life is in the diseased state. For example, one might ask about the trade-off for 1 or 2 years of life lived with a disease that has a utility of 0.5 (eg, bedridden), with some saying even only living for 6 months more in full health would be preferable. Another less commonly used composite measure is health-adjusted life expectancy, which determines the projected amount of years an individual will live in full health, rather than total years lived.30,31

Data Sources Data sources that need to be established and/or utilized for a local or regional needs assessment prior to public health or clinical interventions include ▶▶ Routine disease surveillance. The World Health Organization has established and updates regularly a list of reportable conditions that need to be monitored.32 Many countries may add locally relevant conditions for additional surveillance. A systematic surveillance program with standard case definitions and timely, feasible, and complete reporting is necessary in every country.33 The Centers for Disease Control and Prevention (CDC) provides useful resources on its Web site.34 Reporting can be simple and paper based or sophisticated and, ideally, electronic. Regardless of the system, standard definitions, completeness, and timeliness are key. Furthermore, surveillance data must be analyzed on a regular basis and in a standard manner and reported to public health officials for action such as determining the occurrence of and investigating outbreaks, finding emerging diseases, and measuring the effect of broad interventions such as vaccination campaigns.35 ▶▶ Surveys. Disease surveillance typically does not include great detail to maximize completeness and timeliness; thus, it provides an incomplete assessment of population health. However, the use of surveys that collect additional information can supplement this information to obtain a more complete picture of the health of a population. Such surveys include the Demographic and Health

PGCH_ch04_061-080.indd 67

8/16/18 9:24 AM

68 Part 1: Operating Principles for Engaging in Global Education and Research

Surveys, which are household surveys, and nutrition surveys.36–38 In addition, locally designed needs assessments are important to assess specific needs of a community. Such needs assessments include analysis of local disease surveillance, disease mapping, analysis of hospital and clinic data, and discussion with local leaders and community representatives. As interventions and programs are designed, data needs and data sources must be defined at the outset and indicators of success built into the program design. Simple or complex data collection systems, depending on the setting and availability of funding and local support, must be included in any public health or clinical intervention to measure effect. At a minimum, data collection on the target population, including information on patients being served, basic demographic information, clinical data, and health outcomes, is needed to evaluate outcomes in the group affected by the intervention. For population-based interventions, such as mass vaccinations or broad nutritional interventions, routine disease surveillance and surveys such as the Demographic and Health Surveys can be used. ▶▶ Geographic information system analysis. This allows the mapping of populations by demographic and available socioeconomic characteristics. These maps can be superimposed or combined with mortality or specific disease rates to provide granular and visual description of the health of a population. Geographic information system analysis is useful for planning at the local level, as disease or mortality rates vary geographically. The CDC Web site is a rich source of related information and resources.39 The following data sources are useful for monitoring the effect of interventions and broad programs: ▶▶ Clinic and hospital medical records. These records provide information on who is seeking care and for which conditions and are used to monitor diseases that are clinically symptomatic. ▶▶ Disease registries. For example, where available, cancer or tuberculosis registries, if complete and systematic, can be used to measure geographic and temporal trends. ▶▶ Vital registries. Births, abortions, and death registries are necessary to measure the health of a population. ▶▶ Needs assessments. The needs of a population or community vary, and solid facts are needed to produce a local health plan.40 In addition, discussions with the local population and leaders help to establish priorities as seen by the population itself. ▶▶ Census. Census data provide denominators for rate calculations. Different areas, countries, or regions are of different sizes and also have different demographic distributions. Less economically developed countries have a lower life expectancy and a younger population. Disease frequency needs to be adjusted for a given population to allow for meaningful comparison. In addition, given different populations’ age distributions, standardization of rates by age is also important for rate comparison.

PGCH_ch04_061-080.indd 68

8/16/18 9:24 AM

69 Chapter 4: Epidemiology and Social Determinants of Global Health as the Basis for Education and Research

Data collected from these data sources can be simple or complex, depending on local resources, but should include, at a minimum, patient name, contact information, address or locality of residence, age, assigned sex at birth, gender, race and ethnicity where relevant, and disease condition with date of onset, key signs and symptoms, and, if available, laboratory confirmation. A list of reportable conditions with associated WHO case definitions must be made available to local health officials and professionals for standard reporting.

Approaches to Optimizing Existing Data Systems

Although myriad potential data sources exist, as described previously, each has advantages and disadvantages as a sole source for health information about a population (Table 4-1). Moreover, many low- and middle-income countries have suboptimal methods of data collection and recording (Table 4-2). Research by Setel et al identified a direct correlation with income and coverage of vital registration data (Figure 4-1).41 In addition, data tend to be limited not only in overall availability but also for high-risk populations, including pregnant women, children younger than 5 years, those living in extreme poverty, and individuals living in rural areas.

Estimated coverage of civil registration system (%)

100 80 60 40 20 0

0

5,000

10,000

15,000

20,000

25,000

30,000

Gross national income per head (international dollars) Figure 4-1. Association Between Estimated Coverage of Civil Registration and Gross National Income per Head, 1998–2004 From Setel PW, Macfarlane SB, Szreter S, et al. A scandal of invisibility: making everyone count by counting everyone. Lancet. 2007;370(9598):1569–1577, with permission from Elsevier.

PGCH_ch04_061-080.indd 69

8/16/18 9:24 AM

Users

Advantages

Disadvantages

Suitability for Measuring the Health of the Poor

Census

-Host government -United Nations -Governmental health organizations -Nongovernmental organizations -Researchers

-Complete coverage -Indirect calculation possible -Post-enumeration checks available

-Limited questions -Few health indicators -Can be prone to political influence -Quality varies over time -Boundary changes result in incomparable time series data

-Aims to include all sectors of the population but little health information included -Potential for creating ­poverty maps

Vital registration

-Host government -United Nations -Governmental health organizations -Nongovernmental organizations -Researchers

-Calculation of vital rates (fertility and mortality)

Very low coverage

Biased toward high-income groups

DHS

-Host government -International agencies -Researchers -Nongovernmental organizations

-Good quality -Long history of data collection -Standardized questionnaire -A large range of health indicators including IDTs -Nationally representative -Fast turnaround time -Can track changes over time

-No direct collection ­economic variables, eg, income -Sample frames don’t necessarily cover poor -Sample only includes ­women of childbearing age -Does not include marginalized groups, eg, pavement dwellers

-Asset approach doesn’t necessarily capture household economics -Covers a wide range of variables at individual, household, and ­community levels -Data easily available -Measures of health inequalities have been developed (poverty quintiles)

70

Type of Data

Part 1: Operating Principles for Engaging in Global Education and Research

PGCH_ch04_061-080.indd 70

Table 4-1. Summary of Main Data Sources

8/16/18 9:24 AM

-World Bank -Host government -Researchers -International agencies

-Detailed information on household economics -A broad range of social variables available -Possibility of more flexibility in questionnaire content -Nationally representative

-Sample frames don’t necessarily cover poor -Instruments are less standardized than DHS -Long turnaround time -Less international coverage than DHS -Does not include marginalized groups, eg, pavement dwellers

-Possible to investigate interactions between poverty and other social variables, including health -Limited health variables available, IDTs not included

CDC

-Host government -Researchers -International agencies

-Nationally representative -Very limited international -Special modules can be scope added to answer questions -No direct collection specific to the country ­economic variables, eg, income -Sample frames don’t necessarily cover poor -Does not include marginalized groups, eg, pavement dwellers

-Questionnaire includes limited economic information (basic assets only)

UNICEF MICS

-UNICEF -International agencies

-Nationally representative -Can calculate development indices

-Quota sampling -Variable quality -Does not include marginalized groups -Data not easily accessible

-Internationally comparable indices -Only few indices can be calculated -Sampling unreliable and coverage of poor not known

Population laboratories

-Researchers -International agencies

-Long tradition of expertise -Wealth of data available -Can track variables over time -Possibility of adding new modules

-Predominantly rural based -Very high cost -Geographically specific -Surveillance system creates synthetic environment

-Within study areas, poor are included and carefully monitored -Useful methodology to supplement national surveys

71

8/16/18 9:24 AM

Abbreviations: CDC, Centers for Disease Control and Prevention; DHS, Demographic and Health Survey; IDT, International Development Target; MICS, Multi-indicator Cluster Surveys; UNICEF, United Nations Children’s Fund. Adapted with permission from the DFID publication, Assessing the Health of the Poor: Towards a Pro-poor Measurement Strategy. (DFID Health Resource Centre; 2001:24–25).

Chapter 4: Epidemiology and Social Determinants of Global Health as the Basis for Education and Research

PGCH_ch04_061-080.indd 71

Living Standards Measurement Survey

72 Part 1: Operating Principles for Engaging in Global Education and Research

Table 4-2. Estimated Annual Number and Proportion of Unregistered Births by Region, 2003 Births (in thousands)

Proportion of Unregistered Children

Number of Unregistered Children (in thousands)

South Asia

37,099

63%

23,395

Sub-Saharan Africa

26,879

55%

14,751

Middle east and north Africa

9,790

16%

1,543

Commonwealth of Independent States and Baltic States

5,250

23%

1,218

East Asia and Pacific

31,616

19%

5,901

Latin America and Caribbean

11,567

15%

1,787

Industrialized countries

10,827

2%

218

Developing countries

119,973

40%

48,147

Least-developed countries

27,819

71%

19,682

World

133,028

36%

48,276

From Setel PW, Macfarlane SB, Szreter S, et al. A scandal of invisibility: making everyone count by counting everyone. Lancet. 2007;370(9598):1569–1577, with permission from Elsevier.

In light of these deficiencies, it is important to utilize multiple data sources for a single population in an integrated approach, a process known as triangulation. For example, the UN Millennium Project describes a methodology of calculating the proportion of population in malaria-endemic areas using effective malaria preventive/treatment measures (Figure 4-2). In this situation, administrative data from the governmental trade offices on the numbers of insecticide-treated nets (prevention measure) and artemisinin (treatment measure) were imported, while ministry of health data were used to identify how many of these imported products were distributed by local clinics.

Types of Indicators

Health indicators serve as quantifiable health-related characteristics used to describe the health of a population. Indicators are most often collected for future comparisons, either over a period or among certain groups of people or geographic locations. With regard to global child heath, it has been frequently stated that indicators of child health, in particular younger-than-5 mortality, or the proportion of deaths of children aged 0 to 59 months per 1,000 live births, may serve as a “barometer” of society as a whole. This is mainly because this is a health outcome that is a result of numerous inputs (eg, maternal nutrition and health status, vaccination coverage, food security, safe water and sanitation, availability of prenatal care and child health services). Other indicators generally thought to be associated with better health are subject to fallacy because they are an average estimate,

PGCH_ch04_061-080.indd 72

8/16/18 9:24 AM

73 Chapter 4: Epidemiology and Social Determinants of Global Health as the Basis for Education and Research

“Triangulating” for Proximate Indicators Proxy 1 Data Import of insecticidetreated bed nets and artemisinin

Source Administrative data (trade)

Proxy 2 Data Insecticide-treated bed nets and artemisinin distributed by local clinics

Source Administrative data (ministry of health)

Desired indicator Proportion of population in malaria-risk areas using effective malaria prevention and treatment measures

Figure 4-2. Triangulating for Proximate Indicators

From UN Millennium Project 2005. Preparing National Strategies to Achieve the Millennium Development Goals: A Handbook. New York, NY: United Nations Development Programme; 2005:37.

such as gross national income, which may falsely be elevated due to a small but overtly wealthy population, thereby overestimating the country’s health profile. Even in these situations, the health of children from richer families cannot increase to an order of magnitude that can falsely elevate the health of the entire pediatric population. Finally, children tend to be the population addressed last for health issues because their health may not have an immediate effect on the country. Therefore, typically in countries where child health has improved, the health needs of “higher priority” populations (ie, the adult workforce) have also been enhanced. Table 4-3 presents some of the most commonly reported indicators that are associated with child health.

Meaningful Use of Data Using Data for Program Planning and Implementation Effective intervention planning and implementation requires local data on the condition in question. In situations with limited funding, surveillance, morbidity, and mortality data are used to prioritize and design local interventions. Conditions that can be prevented or effectively controlled are prioritized for intervention development based on the consequences or effect of the condition. Prevalent conditions with high morbidity and mortality are prioritized. Local data should be used to rank conditions by mortality rates as well as morbidity (eg, hospitalization, resulting disability, cost). In addition, disease incidence and prevalence should be used to prioritize interventions. For example, the New York City Department of Health and Mental Hygiene developed the Take Care New York 2020 initiative, using local data, including health and social determinants, and working with local health professionals to improve community health and outcomes.42

PGCH_ch04_061-080.indd 73

8/16/18 9:24 AM

74 Part 1: Operating Principles for Engaging in Global Education and Research

Table 4-3. Commonly Reported Population Health Indicators Mortality Indicators

High-Income Countries

Low-Income Countries

Perinatal mortality rate

,6 deaths per 1,000 live births

.25 deaths per 1,000 live births

Neonatal mortality rate

,4–6

.40

Infant mortality rate

,8–10

.40–60

Younger-than-5 mortality rate

,10

.80–100

Maternal mortality ratio

5–10 per 100,000 live births

.400–500

Demographic Indicators

High-Income Countries

Low-Income Countries

Crude birth rate

,15 births per 1,000 population

.30 births per 1,000 population

Crude death rate (deaths per population at midyear)

,10

.15

Life expectancy

Males: .70 y Females: .75 y

,50–55 y

Total fertility rate

,2 births per women 15–49 y

.4

Contraceptive prevalence rate

.75%

,50%

Service Delivery Indicators

Associated With

% deliveries with skilled birth attendance

Proxy for likely maternal death

% of population with access to safe water (,1 km away or ,15–30 min to obtain)

Public planning of services

% of population with access to health services

Governmental public planning of service delivery

% latrine coverage

Status of governmental public planning

% of children fully immunized (according to Expanded Programme on Immunization)

Functional status of health care system

Once conditions are selected based on local or regional data, implementation of extant evidence-based intervention (eg, interventions whose effectiveness is supported by research) are indicated. The CDC and others have compiled lists of evidence-based interventions.43 For children-specific interventions, see the WHO policy guide for implementing essential interventions for reproductive, maternal, newborn, and child health.44

PGCH_ch04_061-080.indd 74

8/16/18 9:24 AM

75 Chapter 4: Epidemiology and Social Determinants of Global Health as the Basis for Education and Research

Using Health Data for Program Evaluation and Quality Improvement It is important to include a clear plan for collecting data needed for evaluating program effect and quality of services in the design phase of programs and ­interventions. ▶▶ Program monitoring and evaluation. Program evaluation consists of collecting, analyzing, and using results of these analyses for assessing the effectiveness of a program or intervention in achieving predetermined outcomes. Outcomes need to be defined and data collection procedures established at the time of program planning and implementation. Program managers and evaluators will need to strike a balance between collecting sufficient data while avoiding collecting unnecessary data (and, thus, overburdening implementation and clinical staff). It is important to define key outcomes that are directly related to the program or intervention and that are important locally. Once outcomes and needed variables are defined, programs will need to regularly collect the needed data and have a plan for analysis. For program monitoring, monthly data analysis of basic outcomes is needed with discussion of results with program staff. Basic outcomes analysis entails analysis of those variables that are achievable on a monthly basis. Program evaluation is more complex and entails analyzing all predetermined outcomes and related patient and setting characteristics. See program evaluation information on the CDC Web site at www.cdc.gov/eval. ▶▶ Quality improvement. Quality improvement also relies on the systematic collection and analysis of data to measure quality of care and includes the design and implementation of interventions to improve quality based on the findings of the systematic analysis. Quality improvement is a cycle of planning, executing, and measuring. Various methods are used for quality improvement, such as plando-study-act (PDSA) cycles.45 More information can be found at the Institute for Healthcare Improvement (www.ihi.org) and the National Institute for Children’s Health Quality (www.nichq.org) Web sites. The Institute for Healthcare Improvement uses a specific method, the science of improvement, which uses innovation and rapid cycle testing to generate knowledge that promotes positive change. The Agency for Healthcare Research and Quality (www.ahrq.gov) provides evidence-based information and tools that can be used to improved quality of care. ▶▶ Implementation science (see Appendix C). Implementation science, or knowledge translation, has emerged as a rigorous research methodology used to evaluate interventions proven to be efficacious in randomized, controlled (real-world) settings. This field of research has become quite significant in global child health. Evaluating the effectiveness of interventions within the human and structural resource constraints of many low- and middle-income country settings is particularly valuable in assessing whether a program can and should be expanded or scaled-up. A guiding principle is that knowledge and materials produced by health research should lead to improved individual,

PGCH_ch04_061-080.indd 75

8/16/18 9:24 AM

76 Part 1: Operating Principles for Engaging in Global Education and Research

community, and population health by 1) reaching the people for whom they are intended; 2) being adapted to local circumstances; and 3) being implemented effectively, safely, equitably, and in a timely and patient-centered manner. The Fogarty International Center at the National Institute of Health46 and Society for Implementation Research Collaboration (https://www.societyforimplemen tationresearchcollaboration.org) provide substantial information on implementation science research methods, as well as possible resources for training.

Training Needs: Resources to Improve Skills in Meaningful Data Use in Global Child Health The importance of accurate, timely, and complete data collection must be stressed to elected officials and public health officials, clinicians, nurses, and other health care professionals during and after their training. At a minimum, medical and nursing schools should teach basic epidemiological concepts, principles of disease surveillance, and the importance of reporting and using data to make decisions. At the level of ministry of health, frontline staff that are in the field benefit from short training in data collection for disease surveillance, outbreak detection and investigation, and participation in local needs assessments. At regional and central ministry of health levels, additional skills are needed, including staff training at a higher level that can implement surveillance systems and ensure complete, accurate, and timely data collection; oversee outbreak investigations; prioritize resources; and conduct surveys. Earning a master’s degree in public health is an efficient way to obtain training and knowledge on the use of data for research, planning, or improvement. Studies can be focused on a variety of areas; however, to acquire a deep understanding of data and analysis, a master’s degree in epidemiology is useful. Some teaching hospitals and departments of health offer preventive medicine and public health residencies that allow the pursuit of a master’s of public health while obtaining practical experience in public health, research, and prevention. Additional resources for training in epidemiology, research, and quality include ▶▶ Centers for Disease Control and Prevention (www.cdc.gov) • Epidemic Intelligence Service (https://www.cdc.gov/eis/index.html) • International Experience and Technical Assistance Program (https://www. cdc.gov/globalhealth/ieta/default.htm) • Association of Schools and Programs of Public Health/CDC Allan Rosenfield Global Health Fellowship Program (https://www.aspph.org/study/fellowshipsand-internships) • Preventive Medicine Residency and Fellowship (https://www.cdc.gov/ prevmed) • Council of State and Territorial Epidemiologists Applied Epidemiology Fellowship (http://cstefellows.org)

PGCH_ch04_061-080.indd 76

8/16/18 9:24 AM

77 Chapter 4: Epidemiology and Social Determinants of Global Health as the Basis for Education and Research

• Evaluation Fellowship Program (https://www.cdc.gov/eval/fellowship/ index.htm) ▶▶ US Agency for International Development (USAID) (https://www.usaid.gov) • Global Health Fellows Program II (https://www.ghfp.net ) ▶▶ Institute for Healthcare Improvement (www.ihi.org) • Leadership development program for physicians and various other trainings, both in the United States and abroad • Online courses ▶▶ Agency for Healthcare Research and Quality (www.ahrq.gov) • Continuing education • Meetings and conferences ▶▶ Global child health fellowships (with focus on research/public health, service delivery) • Boston Children’s Hospital Global Pediatric Fellowship Program (www.childrenshospital.org/global-health/fellowships/pediatric) • Children’s Hospital of Philadelphia David N. Pincus Global Health Fellowship Program (http://www.chop.edu/pediatric-fellowships/global-health-­ center/fellowship) • University of Massachusetts Pediatrics Global Health Fellowship (https:// www.umassmed.edu/pediatrics/pediatrics-global-health-fellowship) • Massachusetts General Hospital Global Health Innovations and Leadership Fellowship (www.massgeneral.org/emergencymedicineglobalhealth/­ education/Global_Health_Leadership_Fellows.aspx)

References 1. Victora CG, Requejo JH, Barros AJ, et al. Countdown to 2015: a decade of tracking progress for maternal, newborn, and child survival. Lancet. 2016;387(10032):2049–2059 2. United Nations Children’s Fund, World Health Organization. Countdown to 2015: A Decade of Tracking Progress for Maternal, Newborn and Child Survival. The 2015 Report. Geneva, Switzerland: World Health Organization; 2015. http://countdown2030.org/ documents/2015Report/Countdown_to_2015_final_report.pdf. Accessed June 19, 2018 3. United Nations Children’s Fund, World Health Organization, World Bank, United Nations Population Division. Levels and Trends in Child Mortality: Report 2015. Estimated Developed by the UN Inter-agency Group for Child Mortality Estimation. New York, NY: United Nations Children’s Fund; 2015. https://www.unicef.org/publications/files/Child_Mortality_Report_2015_ Web_9_Sept_15.pdf. Accessed June 19, 2018 4. You D, Hug L, Ejdemyr S, et al. Global, regional, and national levels and trends in under-5 mortality between 1990 and 2015, with scenario-based projections to 2030: a systematic analysis by the UN Inter-agency Group for Child Mortality Estimation. Lancet. 2015;386(10010):2275–2286 5. Global Burden of Disease Pediatrics Collaboration; Kyu HH, Pinho C, Wagner JA, et al. Global and national burden of diseases and injuries among children and adolescents between 1990 and 2013: findings from the Global Burden of Disease 2013 study. JAMA Pediatr. 2016;170(3):267–287 6. Save the Children. Surviving the First Day. State of the World’s Mothers 2013. https://www. savethechildren.org/content/dam/usa/reports/advocacy/sowm/sowm-2013.pdf. Published May 2013. Accessed June 19, 2018

PGCH_ch04_061-080.indd 77

8/16/18 9:24 AM

78 Part 1: Operating Principles for Engaging in Global Education and Research

7. Institute for Health Metrics and Evaluation. The Health of Young Children in America. Seattle, WA: Institute for Health Metrics and Evaluation; 2016. http://www.healthdata.org/policy-report/ health-young-children-america. Accessed June 19, 2018 8. Bhutta ZA, Das JK, Bahl R, et al. Can available interventions end preventable deaths in mothers, newborn babies, and stillbirths, and at what cost? Lancet. 2014;384(9940):347–370 9. Lawn JE, Kerber K, Enweronu-Laryea C, Massee Bateman O. Newborn survival in low resource settings—are we delivering? BJOG. 2009;116(suppl 1):49–59 10. Lawn JE, Blencowe H, Oza S, et al. Every Newborn: progress, priorities, and potential beyond survival. Lancet. 2014;384(9938):189–205 11. United Nations Children’s Fund, World Health Organization. Ending Preventable Child Deaths From Pneumonia and Diarrhoea by 2025: The Integrated Global Action Plan for Pneumonia and Diarrhoea (GAPPD). Geneva, Switzerland: World Health Organization; 2013. http://www.who. int/maternal_child_adolescent/documents/global_action_plan_pneumonia_diarrhoea/en. Accessed June 19, 2018 12. Kallander K, Burgess DH, Qazi SA. Early identification and treatment of pneumonia: a call to action. Lancet Glob Health. 2016;4(1):e12–e13 13. World Health Organization. Health for the World’s Adolescents: A Second Chance in the Second Decade. Geneva, Switzerland: World Health Organization; 2014. http://apps.who.int/adolescent/ second-decade/files/1612_MNCAH_HWA_Executive_Summary.pdf. Accessed July 5, 2018 14. Institute for Health Metrics and Evaluation. GBD compare. Viz hub. http://vizhub.healthdata.org/ gbd-compare. Accessed June 29, 2018 15. Piot P, Caldwell A, Lamptey P, et al. Addressing the growing burden of non-communicable disease by leveraging lessons from infectious disease management. J Glob Health. 2016;6(1):010304 16. Huebner G, Boothby N, Aber JL, et al. Beyond survival: the case for investing in young children globally. National Academy of Sciences Web site. https://nam.edu/wp-content/uploads/2016/09/ Beyond-Survival-The-Case-for-Investing-in-Young-Children-Globally.pdf. Published June 16, 2016. Accessed June 19, 2018 17. UN Platform on Social Determinants of Health. Health in the post-2015 development agenda: need for a social determinants of health approach. http://www.who.int/social_determinants/advocacy/ health-post-2015_sdh/en. Accessed June 19, 2018 18. World Health Organization. Closing the Gap: Policy Into Practice on Social Determinants of Health: Discussion Paper for the World Conference on Social Determinants of Health, 19–21 October 2011. Geneva Switzerland: World Health Organization; 2011. http://www.who.int/ sdhconference/Discussion-paper-EN.pdf. Accessed June 19, 2018 19. Development Strategy and Policy Analysis Unit, Development Policy and Analysis Division, Department of Economic and Social Affairs. Inequality Measurement. Development Issues No. 2. New York, NY: United Nations Department of Economic and Social Affairs; 2015. http://www. un.org/en/development/desa/policy/wess/wess_dev_issues/dsp_policy_02.pdf. Published October 21, 2015. Accessed June 19, 2018 20. Rural Health Information Hub. Social determinants of health for rural people. https://www. ruralhealthinfo.org/topics/social-determinants-of-health. Reviewed September 1, 2017. Accessed June 19, 2018 21. Richardson DB. An incidence density sampling program for nested case-control analyses. Occup Environ Med. 2004;61(12):e59 22. World Health Organization. Global Health Risks: Mortality and Burden of Disease Attributable to Selected Major Risks. Geneva, Switzerland: World Health Organization; 2009. http://www.who. int/healthinfo/global_burden_disease/GlobalHealthRisks_report_full.pdf. Accessed June 19, 2018 23. Soleman N, Chandramohan D, Shibuya K. Verbal autopsy: current practices and challenges. Bull World Health Organ. 2006;84(3):239–245 24. Kumar R, Kumar D, Jagnoor J, Aggarwal AK, Lakshmi PV. Epidemiological transition in a rural community of northern India: 18-year mortality surveillance using verbal autopsy. J Epidemiol Community Health. 2012;66(10):890–893

PGCH_ch04_061-080.indd 78

8/16/18 9:24 AM

79 Chapter 4: Epidemiology and Social Determinants of Global Health as the Basis for Education and Research

25. Centers for Disease Control and Prevention. Principles of epidemiology in public health practice, third edition. An introduction to applied epidemiology and biostatistics. Lesson 3: measures of risk. https://www.cdc.gov/ophss/csels/dsepd/ss1978/lesson3/section3.html. Updated May 18, 2012. Accessed June 19, 2018 26. Üstün N, Kostanjsek N, Chatterji S, Rehm J, eds. Measuring Health and Disability: Manual for WHO Disability Assessment Schedule WHODAS 2.0. Geneva, Switzerland: World Health Organization; 2010. http://apps.who.int/iris/bitstream/10665/43974/1/9789241547598_eng.pdf. Accessed June 19, 2018 27. Zarate V. DALYs and QALYs in developing countries. Health Aff (Millwood). 2007;26(4):1197–1198 28. Sassi F. Calculating QALYs and DALYs: Methods and Applications to Fatal and Non-Fatal Conditions. In: Preedy VR, Watson RR, eds. Handbook of Disease Burdens and Quality of Life Measures. New York, NY: Springer; 2010 29. Manca A, Hawkins N, Sculpher MJ. Estimating mean QALYs in trial-based cost-effectiveness analysis: the importance of controlling for baseline utility. Health Econ. 2005;14(5):487–496 30. Wolfson M, Rowe G. HealthPaths: using functional health trajectories to quantify the relative importance of selected health determinants. Demogr Res. 2014;31(31):941–974 31. World Health Organization. Health status statistics: mortality. http://www.who.int/healthinfo/ statistics/indhale/en. Accessed June 19, 2018 32. World Health Organization. Communicable Disease Surveillance and Response Systems: Guide to Monitoring and Evaluating. Geneva, Switzerland: World Health Organization; 2006. http://www. who.int/csr/resources/publications/surveillance/WHO_CDS_EPR_LYO_2006_2.pdf. Accessed June 19, 2018 33. Adokiya MN, Awoonor-Williams JK, Barau IY, Beiersmann C, Mueller O. Evaluation of the integrated disease surveillance and response system for infectious diseases control in northern Ghana. BMC Public Health. 2015;15:75 34. Centers for Disease Control and Prevention. Surveillance resource center. https://www.cdc.gov/ surveillancepractice/index.html. Updated November 7, 2017. Accessed June 19, 2018 35. Krause G, Blackmore C, Wiersma S, Lesneski C, Gauch L, Hopkins RS. Mass vaccination campaign following community outbreak of meningococcal disease. Emerg Infect Dis. 2002;8(12):1398–1403 36. The DHS Program. Demographic and Health Surveys. http://dhsprogram.com. Accessed June 19, 2018 37. Standardized Monitoring and Assessment of Relief and Transitions. SMART and Rapid SMART Methodology. SMART Methodology Manual 2.0. http://smartmethodology.org/survey-planningtools/smart-methodology. Accessed June 19, 2018 38. Centers for Disease Control and Prevention. National Center for Health Statistics. National Health and Nutrition Examination Survey. https://www.cdc.gov/nchs/nhanes/index.htm. Updated June 28, 2018. Accessed June 29, 2018 39. Centers for Disease Control and Prevention. GIS and public health at CDC. https://www.cdc.gov/ gis/index.htm. Updated October 11, 2016. Accessed June 19, 2018 40. Centers for Disease Control and Prevention. Community Health Assessment for Population Health Improvement: Resource of Most Frequently Recommended Health Outcomes and Determinants. Atlanta, GA: Office of Surveillance, Epidemiology, and Laboratory Services; 2013. https://stacks. cdc.gov/view/cdc/20707. Accessed July 5, 2018 41. Setel PW, Macfarlane SB, Szreter S, et al. A scandal of invisibility: making everyone count by counting everyone. Lancet. 2007;370(9598):1569–1577 42. New York City Department of Health and Mental Hygiene. Take Care New York 2020. https:// www1.nyc.gov/site/doh/health/neighborhood-health/take-care-new-york-2020.page. Accessed June 19, 2018 43. Centers for Disease Control and Prevention. State, Tribe, Local and Territorial Public Health Professionals Gateway. Evidence-based practices. https://www.cdc.gov/stltpublichealth/program/ resources/evidence.html. Updated November 9, 2015. Accessed June 19, 2018

PGCH_ch04_061-080.indd 79

8/16/18 9:24 AM

80 Part 1: Operating Principles for Engaging in Global Education and Research

44. Partnership for Maternal, Newborn and Child Health, World Health Organization. A Policy Guide for Implementing Essential Interventions for Reproductive, Maternal, Newborn and Child Health (RMNCH): A Multisectoral Policy Compendium for RMNCH. Geneva, Switzerland: World Health Organization; 2014. http://www.who.int/pmnch/knowledge/publications/policy_compendium. pdf. Accessed June 19, 2018 45. Guinto LB, Amore G, Khanna A, Dinescu LI. Poster 495 patient experience in an outpatient pain clinic: a plan-do-study-act quality improvement project. PM R. 2016;8(9S):S321 46. National Institutes of Health Fogarty International Center. Implementation science information and resources. http://www.fic.nih.gov/researchtopics/pages/implementationscience.aspx. Accessed June 19, 2018

PGCH_ch04_061-080.indd 80

8/16/18 9:24 AM

81

CHAPTER 5

A New Development Matrix for Global Child Health Danielle Laraque-Arena, MD, FAAP Syeda Hafsa Shahid, MD

abstract The discussion of global child health should include consideration of the economic and political realities of different countries. These realities will certainly reflect on the health profession educational systems and research capabilities of each country. The categorization of countries is usually based on income: low, lower-middle, upper-middle, and high income/resource. However, in this chapter, we propose that income is not the only determinant of how each category of countries proceeds or should proceed to address health imperatives. Through technologies not available even a decade ago, all countries, regardless of income level, have greatly increased internal and external connectivity. One example is the availability of cell phones in the most impoverished countries. These technologies have not only quickened the pace of development but also allowed for a rethinking of the progress possible and the just-in-time response to health emergencies, scientific advancements, and the sharing of best practices across borders. This information revolution can, we propose, lead to recognition of the mistakes of high-income, industrialized nations and, thus, avoidance of repeating those mistakes. Disaggregation of health data reflects health disparities within each of the country income categories, signifying a need for a more complex analysis of educational and research approaches to resolving health concerns. For low-income countries it may be possible to tackle basic survival problems resulting from extreme poverty, while concurrently applying 21st-century solutions to improve health outcomes more quickly. Thus, we propose a new matrix for the development of child health that embraces new-century transformation of educational and research efforts (Figure 5-1). Illustrative case examples will demonstrate the application of this matrix in educational efforts in each country income/resource category. At the root of this analysis is the recognition that economic inclusion and social justice must drive changes to improve the health of individuals and populations in all countries.

PGCH_ch05_081-096.indd 81

8/16/18 9:24 AM

82 Part 1: Operating Principles for Engaging in Global Education and Research

Low-Income Countries

Middle-Income Countries

High-Income Countries

Survival Plus

Beyond Survival and New Opportunities

Thrival and Rediscovery

Innovative sustainable models for improvement

IMR targets

Elimination of disparities (IMR targets) integrated models

IMR targets MCH infection prevention

Chronic disease prevention

Prevention works best

Avoiding environmental degradation

Avoiding environmental degradation

Avoiding environmental degradation

Figure 5-1. Heterogeneity of Developmental Matrix for Global Child Health Abbreviations: IMR, infant mortality rate; MCH, maternal and child health. Modified from Laraque D. Global child health: reaching the tipping point for all children. Acad Pediatr. 2011;11(3):226–233, with permission from Elsevier.

Teaching Points 1 Economies are divided among income groups according to gross national

income per capita. The groups are low income ($1,005 or less); lowermiddle income ($1,006–$3,955); upper-middle income ($3,956–$12,235); and high income ($12,236 or more).

2 Via education and research partnerships, global health care workers can

establish sustainable capacity models successful in low- to middle-income countries that may provide road maps that are applicable in high-income countries’ child health care systems.

3 Biases may affect policy initiatives and the necessary needs analyses that must be completed when addressing the overall educational and research needs of low-, middle-, and high-income countries.

4 Principles of strength-based approaches framed by global competence educa-

tion and research principles are valuable when working with countries across the spectrum of income and resources.

5 Issues affecting all countries, such as environmental degradation, require a global approach to arrive at sustainable global solutions for all.

PGCH_ch05_081-096.indd 82

8/16/18 9:24 AM

83 Chapter 5: A New Development Matrix for Global Child Health

History and Context Countries are classified on the basis of income as categorized by the World Bank. Entries to the World Bank for member countries (189) and all other economies are made on a population threshold of more than 30,000. Using the World Bank Atlas method, economies are divided among income groups according to the most recent available gross national income per capita (currently 2016). The groups are low income ($1,005 or less); lower-middle income ($1,006–$3,995); upper-middle income ($3,956–$12,235); and high income ($12,236 or more).1 Although the economic leverage of high-income countries equips them with readily available modern tools, it is the immediate and large-scale need in the lowand middle-income world that actually drives the development of successful global health projects. It is the very tools borrowed from the former that, in turn, help build innovative and efficient models that are implemented in middle- and low-income countries but can be replicated back in high-income countries, thus demonstrating the importance of all-inclusive knowledge and technology sharing across borders. The exchange of information has never before been as crucial as it is in current times, given the swift pace of technological advancement and an even faster course of its adaptability among all those who are even just remotely aware of these advancements. It is with this premise that we propose a matrix where, despite the heterogeneity of economic categories of specific countries that set them apart in some aspects, there are many more common threads weaving through this global tapestry of child health that bring this grand design together across nations despite political borders and economic barriers. The discussion of global child health stems from the need to improve newborn, child, and adolescent health in all income levels across all countries. This global agenda can lead to collaborative research grounded in scholarship that facilitates discussions between leading global experts in global child health, other academic institutions, medical students, residents, other health professionals, and visiting scholars. In addition to creating an interdisciplinary approach, a team effort sets the groundwork for programs to span across borders and include field sites in different countries. Next, building on principles of education and research partnerships, global health care workers can establish sustainable capacity models that would not only demonstrate success in the low- to middle-income countries but may provide a road map so beneficial that it would be, in turn, applicable in the high-income countries’ child health care systems. Following the development of such models with demonstrated success and wide-scale implementations, this core evidence can be used to inform policy development in the area of global child health. Finally, this evidence and policy drive can pave the path toward persistence and advocacy and allow partnerships in the political, financial, and municipal realms, giving a grassroots-level production of an idea the ability to grow and reach newer heights and have a large-scale effect.

PGCH_ch05_081-096.indd 83

8/16/18 9:24 AM

84 Part 1: Operating Principles for Engaging in Global Education and Research

Best Practice Here are examples of models that have integrated some of the principles outlined previously.

University of Toronto International Health Program In 2015, more than 190 world leaders committed to 17 Sustainable Development Goals (SDGs) to help end extreme poverty, fight inequality and injustice, combat climate change, and address numerous social determinants of health. Among the 17 categories is health, and within this category, specifically, the status of children is noted. The structure of the University of Toronto International Health Program includes current global child health trends and priorities, such as ending hunger and addressing nutrition, growth and development, infection and immunity, and cancer and blood disorders. Keeping these priorities in mind, specific research teams were assembled to address maternal and neonatal health as it relates to micronutrient fortification, nutrition, and implementation science; social determinants and knowledge synthesis; nutrition and metabolic disease; knowledge translation and implementation science; epidemiology; infectious disease; sickle cell disease; vitamin supplementation; and pain management. Collaborative research with education is a model borrowed from SickKids Centre for Global Child Health at the University of Toronto. These research teams collaborated at international levels with various countries. The respective educational institutions and/or health ministries and local medical systems were also included in the process to formulate projects (described as follows) and deliver sustainable models for improving child health to the locales. Some examples also demonstrate that research has helped develop new and innovative tools to be applied at a grassroots and indigenous level in field sites across Africa, the Caribbean, South America, and South Asia. These case examples predominantly focused on nutrition.

Canada (Hub Country) and Collaborating Partners Uganda, Pakistan, Kenya, and Ghana Fetal Heart Monitor Project (Uganda): “Human Energy to Save Lives”

This project was driven by the top research priority of decreasing death from birth asphyxia by 2015. It involved collaboration and partnership between Canadian and African researchers to face the challenge. ▶▶ Problem: Fetal heart rate monitoring equipment in high-income countries is expensive, fragile, unavailable, and difficult to repair if used in low- and middle-income countries; thus, the goal was to integrate a medical device that was rugged and reliable and did not depend on electricity—ie, a self-sustaining and easy to use fetal heart rate monitor. ▶▶ Proposed Solution: This led the researchers involved to engineer and test a new kind of fetal heart monitor based on a crank-operated mechanism for which 1 minute of winding yielded 10 minutes of monitoring. ▶▶ Proof of Concept: This human-powered fetal heart monitor was tested on pregnant women in 2 sites in Uganda.

PGCH_ch05_081-096.indd 84

8/16/18 9:24 AM

85 Chapter 5: A New Development Matrix for Global Child Health

The low-cost and lifesaving features of this innovative design earned the team a global design award, making this a useful medical device not only in Uganda but in all countries across the globe. It may function as a primary resource in lowand middle-income nations and as a secondary one in high-income nations in times of resource constraints, such as natural disasters (eg, hurricanes Sandy or Katrina), or financial constraints (ie, in financially stressed rural or inner-city health care centers). Users of this fetal heart rate monitor identified 60% more cases of fetal distress requiring responsive management and prompt delivery.2 This is an example of a developmental stride in a low- or middle-income country that has also ameliorated health disparities and improved child health in the venues of high-income countries.

An Integrated Toolkit to Save Newborn Lives (Rural Pakistan and Kenya)

According to World Health Organization Global Health Observatory data, in 2012, 2.9 million neonatal deaths occurred, and almost half of all deaths were among those younger than 5 years.3 ▶▶ Problem: There were 256,000 neonatal deaths in Pakistan alone in 2013, accounting for the highest mortality rate in South Asia.3 ▶▶ Proposed Solution: This increased mortality burden led to the development and trialing of an integrated newborn survival kit. This kit was aimed at being low-tech, cost-effective, and easy to use and contained high-impact interventions that could fit in a resealable storage bag. Each kit cost about $5.4 The goal of the integrated toolkit project was to reduce and provide early identification of the most common causes of newborn death, including infection and complications related to preterm birth and low birth weight, in some of the world’s most at-risk and hard-to-reach populations. Also, since development of the growing brain can be affected through the same insults that are major causes of mortality, reducing the number of those insults, or detecting them sooner, may not only save lives but also improve neurodevelopment. Extensive research and experience in high-income countries indicate that the first month after birth is the most critical period of brain growth that can be affected in many ways, including hypothermia and infection, and low- and lower-middle– income countries have taken this information to reduce these impediments via this kit.5 The contents include a clean delivery kit to minimize infection at time of birth and delivery, with a sterile blade and a sterile clamp. For direct neonatal care, the kit includes chlorohexidine for the umbilical stump, which has been shown to decrease certain infections by 75% and mortality rate from all causes by 25% to 34%.6 Other items include an emollient to promote skin integrity, decrease infection, and prevent hypothermia—factors that have been shown to decrease mortality in hospitalized preterm neonates7; a handheld scale to identify low birth weight; a device to continuously monitor temperature and identify fever or hypothermia; and a mylar infant sleeve and reusable heating device (blanket) to treat hypothermia. As one of the lead project investigators explained, “[Given] 3 million neonatal deaths annually, two-thirds of which are secondary to infection, [low birth

PGCH_ch05_081-096.indd 85

8/16/18 9:24 AM

86 Part 1: Operating Principles for Engaging in Global Education and Research

weight], and prematurity, this project aims to bring and deliver health care directly to these newborns most at risk.”8 ▶▶ Proof of Concept: The project plans to enroll 14,000 newborns in 2 trials and demonstrate that it can reduce mortality by more than one-third for just a few dollars per neonate. The 2 arms of measurement are intervention effectiveness and outcome. The former assesses how often the kit is delivered for use, as only female health care workers in Pakistan act as the primary outreach workers for mothers, given cultural nuances of the region. The latter measures changes in neonatal mortality, reflecting safer birth and safer first month after birth. The biggest challenge lies in accessing these mothers in the prenatal period in such remote, rural areas and following up for data collection. This project encompasses some of the key components of our revised global health developmental matrix where, in addition to survival, there is an innovative sustainable model for improvement that targets infant mortality rate, maternal and child health, and infection prevention in countries with the least amount of resources.

A Toolkit for Minimizing the Effect of Procedural Pain in Neonates (Ghana)

Another project that takes research findings from high-income nations and applies the preventive measures derived from them in lower resourced countries is a pain toolkit. This kit is designed to minimize procedural pain in neonates, implemented primarily in Ghana, and developed by researchers from SickKids Centre for Global Child Health. Neonatal intensive care units (NICUs) are now adapting ways to reduce pain for neonates born preterm and treated in special NICUs. ▶▶ Problem: Newborns in NICUs may experience moderate to severe pain several times a day due to diagnostic and therapeutic procedures, such as blood sample collection and medicine injections. The severity of brain defects found later among children born preterm can be linked to the number of painful procedures experienced in the NICU. Researchers have noted that “higher volumes of painful procedures with inadequately managed pain have also been associated with cognitive, language and motor problems and low academic achievement. Although the consequences of pain are known, procedural pain is frequently under-managed and under-prioritized.”9 There is clearly a long-term impact affecting not only those in low- and middle-income countries but also neonates in high-income countries. There is also a steady increase in the number of preterm newborns because of modern technology that allows for early birth and sustainability of these neonates in acute intensive care. In North America, Europe, and Australia, surveys show neonates are exposed to an average of 4 to 14 painful procedures daily, with only one-third receiving pain relief. Even less is known about pain management in neonates in low- and middle-­ income countries, where there is markedly higher incidence of neonatal sickness and death. There is, however, a survey in Kenya that showed neonates in 7 special care newborn nurseries experienced, on average, 4 painful procedures daily, half of those injections and blood sample withdrawals. No form of analgesia was documented in that study.9

PGCH_ch05_081-096.indd 86

8/16/18 9:24 AM

87 Chapter 5: A New Development Matrix for Global Child Health

▶▶ Proposed Solution: Given the pain burden of neonates in NICUs, the goal of this

project was to introduce caregivers and parents in Ghana to a toolkit that has been adapted from successful practices in Canada. Additionally, videos and other educational materials detail simple and universally affordable and proven ways to mitigate procedural pain for a newborn. These include sweet solutions such as sucrose and glucose given orally prior to painful procedures such as heel sticks and blood draws; kangaroo care, a well-known skin-to-skin care with a parent; facilitated tucking, in which newborns are held in fetal-like positions to provide support and boundaries; and, finally, breastfeeding. Combined, these interventions demonstrate a cumulative pain-relieving effect. This project highlights one of the facets of our discussion—that economic limitations are not necessarily an obstacle and, as demonstrated here, simple solutions can be used to tackle health imperatives just as efficiently in low-income countries as in higher income countries. ▶▶ Proof of Concept: Partnership among SickKids, University of Ghana School of Nursing and Midwifery, and Korle-Bu Teaching Hospital in Accra, Ghana, has played a pivotal role in knowledge translation of this project and its aims. The toolkit and its interventions have been integrated into the curriculum at the nursing school because it has the major health care personnel involved in direct patient care. The pain control content, which was previously limited, can now also be applied on a wider scale, reaching additional countries. This is an example of where research was first used to initiate a project, followed by educational approaches to share the information, which helps to resolve a neonatal health problem more efficiently.

Vitamin D Supplementation (Bangladesh)

One of the factors in proposing our revised paradigm is based on changed diets and exposure to environmental toxins affecting the health of all countries across the income spectrum. Thus, an approach to understanding and tackling such a noncommunicable health imperative would benefit everyone and is a common denominator for our global health matrix. One such project in Dhaka, Bangladesh, is illustrative.10,11 ▶▶ Problem: The following question was proposed: Could improvement in vitamin D status during pregnancy decrease risk of maternal and neonatal illness or death in resource-poor settings? Not only would the answer to this involve amelioration of a preventable harm but also doing so while targeting infant mortality rate and improving maternal and child health. ▶▶ Proposed Solution: The project aims to reduce maternal and infant vitamin D deficiency through collaboration with the International Center for Diarrhoeal Disease Research to establish the safety and efficacy of high-dose vitamin D supplementation for pregnant women in Dhaka. ▶▶ Proof of Concept: Based on initial studies, plans were developed to test vitamin D in large-scale field trials to establish its health effects. The results of this project will correlate to the ongoing research in high-income countries, where

PGCH_ch05_081-096.indd 87

8/16/18 9:24 AM

88 Part 1: Operating Principles for Engaging in Global Education and Research

diet and lifestyle changes have swayed teenagers and young people toward obesity and decreased vitamin D levels, as evidenced by a vast majority of adolescent health medicine.12 Such vitamin deficiencies are affecting not only the growth of their bones but also general health of the growing fetuses of these young women, both in low- and high-income countries.

Sprinkles Global Health Initiative

The Sprinkles Global Health Initiative from SickKids Centre for Global Child Health is perhaps a hallmark of one of the most successful pediatric global health cases that started at a grassroots level and metamorphosed to a grand-scale international program. Following the Copenhagen Consensus of 2008, a “team of Nobel laureate economists found that micronutrient interventions—fortification and supplements designed to increase nutrient intake—were the most effective investment that could be made, with massive benefits for a tiny price-tag.”13 Consultants of the United Nations Children’s Fund (UNICEF) were asked to come up with a solution to solve the iron-deficiency issue in millions of children. Although there are limited data that show optimal amount of iron fortification of resource-­constrained regions, there is universal agreement about the need for iron, an essential dietary nutrient.14 ▶▶ Problem: Iron deficiency anemia (IDA) can manifest in a variety of ways, depending on its severity, and can ultimately lead to chronic fatigue and/or heart failure. The World Health Organization Global Database on Anaemia estimates at least one-quarter of the world’s population affected by IDA is preschool-aged children—more specifically, in low-income nations in Africa and Asia.15 Needless to say, this initiative was a priority for all those involved with it. ▶▶ Proposed Solution: A long-term project was initiated that spanned more than a decade, from 1996 to 2016, enhanced by ongoing research about anemia, zinc deficiency, and more, not only in Canada but also in Ghana and Bangladesh. The international wide-scale implementation of this project makes it an excellent example to demonstrate aspects of our proposed global matrix. For low-income countries, this project provides an innovative, sustainable model for improvement; for lower- and upper-middle–income countries where the goal is to progress beyond survival and have new opportunities, the Sprinkles initiative fits the need of a chronic disease prevention model. Severe IDA can be associated with irreversible impaired neurodevelopment, mixed effects on immunity and infection, decreased exercise capacity, and pediatric stroke.16 Since dietary nutrients are important for immediate and long-term health benefits, dealing with such challenges would help not just those in dire need of improved survival but also those who are experiencing adequate but not excellent health status and outcomes. Such common needs also highlight how faster modes of communication and knowledge sharing across countries from different income levels are important. Although this project was initiated for children with IDA in Africa and Asia, such a successful model can easily be implemented in South

PGCH_ch05_081-096.indd 88

8/16/18 9:24 AM

89 Chapter 5: A New Development Matrix for Global Child Health

Africa or Uruguay. With some exceptions, for iron fortification there is less of a need to implement such an intervention in high-income countries. In Canada, for example, iron-deficiency rates are low because foods are fortified in factories. However, in low-income countries, parents are feeding children homemade food; thus, home-based fortification must be achieved. The challenge was how to provide the right amount of iron—not too little to be ineffective and not too much to lead to iron overload and its concomitant effects on the immune system, including increased susceptibility to infection in certain disease conditions. The solution was to devise a sachet of iron containing a specific quantity that would be added to home food. ▶▶ Proof of Concept: There were numerous other challenges before implementation, such as proving that the intervention works in real settings, identifying a manufacturer willing to make this product at a very low cost and in high volumes for 600 to 700 million children (scalability), and a model for distribution. Finding the right partners who had the capacity to scale up during this effort and who would advocate for the amelioration of iron deficiency was critical. Collaboration among UN agencies such as UNICEF; UNHCR, the UN Refugee Agency; and World Food Programme that primarily deal with children and have greater capacity for knowledge translation and implementation, given their international status, was important. In addition, collaboration with nongovernmental organizations, such as Care Canada, Save the Children, and World Vision, who would also provide national scale-up of this project proved critical. Finally, working synergistically with governments and ministries of different continents and countries, including the Indian subcontinent, Southeast Asia (Indonesia and the Philippines), and Central America, where IDA among children is considered to be the most prevalent, was essential.15 Advocacy was needed regarding the child population and the problems of malnutrition and the presence of positive strategies. Furthermore, having the US Agency for International Development involved and piloting results from the project thus far was needed to recruit entrepreneurial activity. These results would include answers to the ongoing research questions, such as whether parents effectively gave iron to their children and if they liked giving it or not; that is, patient-centered health outcomes research, as recently promoted by programs such as the Agency for Healthcare Research and Quality and Patient-Centered Outcomes Research Institute. Conducting research investigation concurrently with implementing a wide-scale health initiative demonstrates how knowledge translation is a crucial aspect of applying results to revise and further improve ongoing global health projects.

Building Regional Alliances to Nurture Child Health

This is an important era for global child health. It is a benchmark for the international progress on 2015 Millennium Development Goals that were outlined in 2000 at the UN Millennium Summit. This is a crucial time to assess the success of those 8 international developmental goals, and the review has allowed for the establishment of new and revised goals for the next 15 years.

PGCH_ch05_081-096.indd 89

8/16/18 9:24 AM

90 Part 1: Operating Principles for Engaging in Global Education and Research

It is well known among all partners of global child advocacy that nutrition, infection prevention, and chronic disease prevention are necessary to achieve good health for children. There is, however, the need to focus on other complex threats to the health of children, such as child sexual abuse. Child sexual abuse is not confined by geographic boundaries; nor does it solely affect a certain economic stratum. The neglect and harm associated with these adverse childhood experiences lead to many long-term medical and mental health problems and costs to society.17 Additionally, child maltreatment not only affects the behavior, cognitive, affective, and physical functioning of the affected child or adolescent but, through stress mechanisms, can affect the health of the mother experiencing significant stress.18,19 The damage is immeasurable, thus making child abuse and neglect a global health problem that requires intervention across all nations. The resolution adopted by the UN General Assembly on September 25, 2015, at the fourth UN plenary meeting outlines the 2030 agenda for 17 SDGs. One of these important and newly proposed goals (Goal 16) is to promote peaceful and inclusive societies for sustainable development, to provide access to justice for all, and to build effective, accountable, and inclusive institutions at all levels, which further narrows to focus on “end[ing] abuse, exploitation, trafficking and all forms of violence against and torture of children” (Goal 16.2).20 Our proposed developmental matrix for global child health builds on progressing from survival-plus approaches and advancing toward new approaches to address a myriad of child health problems across income levels. Here, we highlight the need to introduce prevention of child abuse globally. This focus also underlines the importance of mental health and safety of all children. Although income can be a constraint for a country, it is still possible to achieve these goals for low-income countries through strength-based approaches enhanced by education and research, as experts from high-income and low-income countries work together. ▶▶ Problem: In Malawi, a lower-income country, the challenge of dealing with abuse is 2-fold: not only is there a large number of children and adults who experience sexual and physical abuse, but, in addition, those in charge of taking care of them—the medical, legal, and social welfare bodies—have not received even the basic level of training in identifying and treating them. ▶▶ Proposed Solution: One case example worth noting is that of Building Regional Alliances to Nurture Child Health (BRANCH), a UN organization founded by Aaron Miller, MD, MPA. The mission of BRANCH is to increase expertise and strengthen collaboration among the medical, legal, and social services agencies that respond to physical and sexual violence. They value partnership, appreciative inquiry, and sustainability. Dr Miller, a child abuse expert with more than 10 years of experience, was the director of the Lincoln Hospital Child Abuse/ Sexual Assault Clinic in the Bronx, NY, before he embarked on the journey of establishing one-stop child abuse centers in Malawi. This work began in 2009 when he collaborated with approximately 45 local doctors, social workers, and police officers in Malawi and shortly after collaborated with the Ministry of

PGCH_ch05_081-096.indd 90

8/16/18 9:24 AM

91 Chapter 5: A New Development Matrix for Global Child Health

Health and UNICEF to plan a child abuse training program (oral communication, February 3, 2016). Earlier, UNICEF and the United Nations Population Fund were creating 21 one-stop centers for child abuse and intimate partner violence, but they were only involving the courts, police, and social welfare; hospitals were not a part of the plan. BRANCH helped bring doctors to the table, and, in the end, the Malawian leaders decided that all the centers should be based in health facilities. BRANCH then progressed to the Nairobi Center of the Eastern and South African Regional Office. ▶▶ Proof of Concept: BRANCH established 8 one-stop centers in Malawi, which have received staff training and increased the number of people to whom services are provided for sexual and physical violence. To first assess physician knowledge and comfort in evaluating child sexual abuse in Malawi, Miller and Barlup Toombs designed a brief educational intervention.21 This consisted of lecture-based training for physicians internationally in the diagnosis of child sexual abuse. The pilot study found that such an intervention could lead to significant improvement in the physician’s identification of child abuse cases and in the interpretation of associated physical examination findings on presentation. It also demonstrated the potential success of designing such training programs on child sexual abuse in a low-income country. These findings led to the development of the Child Abuse and Neglect for Health Professionals in Low-Resource Settings Curriculum for doctors, nurses, and clinical officers, as well as for legal and social welfare workers. BRANCH further tailored this child maltreatment curriculum to fit the local context of Malawi, and, as a UNICEF consultant, Miller established this revised curriculum for provision of services for physical and sexual violence at one-stop centers.22 This is a widely accessible resource that promotes increased communication, information exchange, and networking among multidisciplinary professionals in local private and public agencies and organizations. BRANCH has provided training to 4 one-stop center teams, with plans to expand growth to a total of 23 centers in Malawi. These trainers have now trained 6 one-stop center teams. This is in addition to a partnership with the Malawi Ministry of Health, Malawi College of Medicine, Kamuzu College of Nursing, and a clinical officers program. In 2014, BRANCH also facilitated the establishment of the National Guidelines for Provision of Services for Physical and Sexual Violence and trained 15 other future trainers, including medical, legal, and social welfare leaders in the government. BRANCH has spread its roots from low-income countries to middle-income countries such as Jordan. Child abuse specialist Dr Dena Nazar was awarded a grant by BRANCH for expanding her ongoing work in providing training to diagnose and treat child maltreatment in Amman. BRANCH frames the kind of model that demonstrates aspects of collaboration with health professionals coming from different income levels on the spectrum, as they provide training and education to further expand centers for child advocacy against abuse and neglect. This organization, through its partnership with local leaders and health workforce, achieved swift establishment into a sustainable capacity building model through education and training within a few years.

PGCH_ch05_081-096.indd 91

8/16/18 9:24 AM

92 Part 1: Operating Principles for Engaging in Global Education and Research

Understanding the Environmental Burden of Disease The final and perhaps most important constant in our developmental matrix is that of environmental degradation, a condition that is not only a preventable cause of major child morbidity and mortality but also one that is common to countries of all level incomes.23 Lead poisoning holds an important lesson for global action. An evident bias in the discussion of global child health problems may be that some problems have been eliminated in more economically advanced countries. However, it is known that misguided policies of industrialized countries have often failed to protect the public health and resulted in millions of ­individuals—especially the most vulnerable, children—being exposure to toxins with immediate and lifelong consequences. The history of lead poisoning in the United States is well documented,24 but the most flagrant example of its continuing threat is in the recent event of lead contamination of drinking water in Flint, MI. In this neighboring city to Detroit, one of the pioneering automobile centers and a home to major factories in the United States, the children of Flint experienced lead poisoning in drinking water in the 21st century. ▶▶ Problem: Lead poisoning is a child health problem that is preventable not only by implementing and adhering to standard water treatments in all socioeconomic areas of a relatively wealthy state but also by early identification through screening of those who are asymptomatic but exposed (secondary prevention). The problem of lead-poisoned children and women in Flint occurred when, on April 26, 2014, the city changed its water source from Detroit-supplied Lake Huron to Flint River water as a temporary measure until a new pipeline to Lake Huron was completed.25 ▶▶ What Is Already Known About This Topic? The summary of what happened in Flint is catalogued by the July 2016 Morbidity and Mortality Weekly Report article.26 More detail is published in the book by pediatrician Mona Hanna-Attisha, What the Eyes Don’t See: A Story of Crisis, Resistance, and Hope in an American City.27 It details that in 2014, the city of Flint switched its water source from the Detroit Water Authority (DWA) to the Flint Water System (FWS). Water pipes made of lead need corrosion control to prevent lead from getting into the water supply being delivered by these pipes. Corrosion control was not used at the FWS treatment plant. This neglect led to the levels of lead in Flint tap water increasing over time. “During April 25, 2013–March 16, 2016, among 9,422 blood lead tests received by 7,306 children aged ,6 years living in the area served by FWS, 3.0% of blood lead level (BLL) test results were elevated ($5 mg/ dL). This proportion of elevated BLLs was significantly higher (5.0%) during the early period of the switch from DWA to FWS compared with the previous period when residents consumed water from DWA (3.1%). After the switch back to DWA, the percentage of elevated BLLs returned to levels comparable to those found before the water source switch.”26 ▶▶ Proposed Solutions: This case example foremost highlights the deleterious results of environmental injustice,28 lack of oversight, and neglect of poor and minority communities. The control of the manufacture and use of toxic chemicals in the prevention of toxic exposure is necessary. The switch in the water

PGCH_ch05_081-096.indd 92

8/16/18 9:24 AM

93 Chapter 5: A New Development Matrix for Global Child Health

supply from Lake Huron to the Flint River was known to be one that would result in the use of a corrosive water source. So, while policies existed, the actions of the officials in Flint were noncompliant with the US Environmental Protection Agency Lead and Copper Rule, which calls for action when a water supply is found to be corrosive to prevent the potential release of metals from water service lines. Another fundamental problem highlighted by this case example is the lack of respect toward and involvement of the members of a community when important actions are being taken that may affect them. Had there been public disclosure of the plan for the switch, the discussion and analysis of the environmental and health effect of such a switch could surely have prevented the elevated lead levels. Intervention following exposure, while important to detect noncompliance and exposure to a known neurotoxin such as lead, falls short of the true potential of prevention. Criminal and civil prosecution of those who violated policies and caused harm can serve as a deterrent but does not rectify the existing toxic exposure. In addition, the review of existing policies to make sure that they align with the most robust data is important. This is illustrated, for example, in the appeal to the Environmental Protection Agency to review the analysis of water samples for lead protocol since it appeared to underestimate lead content.28,29 This case example, in the context of the development matrix for child health improvement, is to reflect that while the United States is among the most advanced countries in the world, environmental exposures that are fully known and whose prevention is also known continue to occur. The intervention here calls for continuous vigilance, ever better science, robust legal and public advocacy with regard for all populations, and elimination of health disparities. Some preventive measures, in response to the exposure, taken to attempt to repair and apologize for the damage caused to the children and families of Flint, were as follows; these reflect the importance of a comprehensive package of federal policies to support the long-term health and development of children in Flint who were exposed. • The US Department of Agriculture (USDA) announced that it will temporarily allow the costs of lead screening for the 3,800 Special Supplemental Nutrition Program for Women, Infants, and Children (WIC) participants in Flint to be charged to the WIC program. • The USDA also announced that it will work with schools in the affected area to adopt the Community Eligibility Provision, a program that ensures universal access to school meals for all children in high-poverty schools. • Additionally, the USDA expanded eligibility for the Summer Electronic Benefit Transfer for Children program to include areas experiencing extreme circumstances, such as Flint. Groups such as the American Academy of Pediatrics will continue to support the Flint community in the short and long term and are actively engaged in advocating on this issue at all levels of government to prevent a tragedy like this from occurring again in the future.

PGCH_ch05_081-096.indd 93

8/16/18 9:24 AM

94 Part 1: Operating Principles for Engaging in Global Education and Research

▶▶ Proof of Concept: It is important for us to focus not only on the success stories of

the economically advantaged countries but the health experiences of the disadvantaged demographics in the inner cities of these very same high-income countries. It should also be noted that disadvantage is not limited to the inner cities of high-income countries but extends to rural poor areas and specific subpopulations inclusive of refugee populations and indigenous Native Americans. It is only when we can learn to appreciate the common threads running across the medical and health imperatives of all sectors that we can deal with issues at home as well as abroad. Public policy adherence, strict monitoring, and brisk response are all imperative.

Environmental Scan The success in achieving optimal global child health as explicated by our matrix model is certainly uneven. While we can draw from many case examples that are replicable, the SDGs that evolved from the Millennium Developmental Goals indicate the need for continued urgent attention to the myriad of health problems across all countries, regardless of income levels. There is a need to pool the experiences across all categories of income-level countries to share in problem definition, targeted and specific solutions, proof of concept, scaling up of interventions with robust evaluations, and continuous adherence to policies aimed at protecting individuals and the public at large. Primary/universal prevention—the need to not expose populations to toxins in the first place—as opposed to secondary and tertiary measures to mitigate effects following exposure continues to be a lesson to be learned across all country income categories. Disaggregation of data to expose subpopulations at risk, even in more economically advanced countries, calls for data-driven, meticulous worldwide systems. Interventions that are friendly and least expensive often are appropriate for all countries. Students involved globally in child health problems should be encouraged to follow a set curriculum with the application of sound public health and research methods of evaluation that adhere to ethical principles. It may be inevitable that some of the problems experienced in high-­income countries will be repeated among low- or middle-income nations, but sharing of information and technological advances, applying evidence-based interventions, and relearning and applying patient-, family-, and community-­centered solutions can be guiding principles in effective, non-biased responses to emerging problems and true primary prevention.

References 1. World Bank. World Bank country and lending groups. https://datahelpdesk.worldbank.org/ knowledgebase/articles/906519-world-bank-country-and-lending-groups. Accessed June 19, 2018 2. Byaruhanga R, Bassani DG, Jagau A, Muwanguzi P, Montgomery AL, Lawn JE. Use of wind-up fetal Doppler versus Pinard for fetal heart rate intermittent monitoring in labour: a randomised clinical trial. BMJ Open. 2015;5(1):e006867 3. World Health Organization. Global Health Observatory data repository. Number of deaths (thousands). Data by country. http://apps.who.int/gho/data/view.main.CM1320N?lang5en. Updated September 22, 2017. Accessed June 19, 2018

PGCH_ch05_081-096.indd 94

8/16/18 9:24 AM

95 Chapter 5: A New Development Matrix for Global Child Health

4. Turab A, Pell LG, Bassani DG, et al. The community-based delivery of an innovative neonatal kit to save newborn lives in rural Pakistan: design of a cluster randomized trial. BMC Pregnancy Childbirth. 2014;14:315 5. Liu L, Johnson HL, Cousens S, et al. Global, regional, and national causes of child mortality: an updated systematic analysis for 2010 with time trends since 2000. Lancet. 2012;379(9832): 2151–2161 6. Mullany LC, Darmstadt GL, Khatry SK, et al. Topical applications of chlorhexidine to the umbilical cord for prevention of omphalitis and neonatal mortality in southern Nepal: a community-based, cluster-randomised trial. Lancet. 2006;367(9514):910–918 7. Darmstadt GL, Saha SK, Ahmed AS, et al. Effect of skin barrier therapy on neonatal mortality rates in preterm infants in Bangladesh: a randomized, controlled, clinical trial. Pediatrics. 2008;121(3):522–529 8. SickKids Centre for Global Child Health. An integrated toolkit to save newborn lives in Pakistan. http://www.sickkids.ca/globalchildhealth/Research/Integrated-Toolkit-Pakistan.html. Accessed July 6, 2018 9. Grand Challenges Canada. A toolkit to minimize pain in infants. http://www.grandchallenges.ca/ grantee-stars/0347-03/#description. Accessed June 19, 2018 10. Roth DE, Gernand AD, Morris SK, et al. Maternal vitamin D supplementation during pregnancy and lactation to promote infant growth in Dhaka, Bangladesh (MDIG trial): study protocol for a randomized controlled trial. Trials. 2015;16:300 11. Perumal N, Al Mahmud A, Baqui AH, Roth DE. Prenatal vitamin D supplementation and infant vitamin D status in Bangladesh. Public Health Nutr. 2017;20(10):1865–1873 12. Ekbom K, Marcus C. Vitamin D deficiency is associated with prediabetes in obese Swedish children. Acta Paediatr. 2016;105(10):1192–1197 13. Copenhagen Consensus Center. Third Copenhagen Consensus: Hunger and Malnutrition Assessment. https://www.copenhagenconsensus.com/publication/third-copenhagen-consensushunger-and-malnutrition-assessment-hoddinott-rosegrant-torero. Accessed July 6, 2018 14. Zlotkin SH, Davidsson L, Lozoff B. Balancing the benefits and risks of iron fortification in resourceconstrained settings. J Pediatr. 2015;167(suppl 4):S26–S30 15. de Benoist B, McLean E, Egli I, Cogswell M, eds. Worldwide Prevalence of Anemia 1993–2005: WHO Global Database on Anemia. Geneva, Switzerland: World Health Organization; 2008. http://apps.who.int/iris/bitstream/10665/43894/1/9789241596657_eng.pdf. Accessed June 19, 2018 16. Lundblad K. Rosenberg J, Mangurten H, Angst DB. Severe iron deficiency anemia in infants and young children, requiring hospital admission. Glob Pediatr Health. 2016;3:2333794X15623244 17. Miller AJ. Stress as a factor in family violence. United Nations Children’s Fund Web site. https:// www.unicef-irc.org/article/984. Accessed June 19, 2018 18. Oberlander TF, Weinberg J, Papsdorf M, Grunau R, Misri S, Devlin AM. Prenatal exposure to maternal depression, neonatal methylation of human glucocorticoid receptor gene (NR3C1) and infant cortisol stress responses. Epigenetics. 2008;3(2):97–106 19. Brand SR, Engel SM, Canfield RL, Yehuda R. The effect of maternal PTSD following in utero trauma exposure on behavior and temperament in the 9-month-old infant. Ann N Y Acad Sci. 2006;1071:454–458 20. United Nations. Sustainable Development Knowledge Platform. Transforming our world: the 2030 Agenda for Sustainable Development. https://sustainabledevelopment.un.org/post2015/ transformingourworld. Accessed June 19, 2018 21. Miller AJ, Barlup Toombs K. Educating physicians internationally in the diagnosis of child sexual abuse: evaluation of a brief educational intervention in Malawi. J Child Sex Abus. 2014;23(3): 247–255 22. Miller AJ, Kaufhold M, eds. Child Maltreatment Medical Curriculum. New York, NY: Building Regional Alliances to Nurture Child Health; 2016. http://www.branchpartners.org/branch-childmaltreatment-medical-curriculum. Accessed June 19, 2018

PGCH_ch05_081-096.indd 95

8/16/18 9:24 AM

96 Part 1: Operating Principles for Engaging in Global Education and Research

23. Prüss-Üstün A, Corvalán C. Preventing Disease Through Healthy Environments: Towards an Estimate of the Environmental Burden of Disease. Geneva, Switzerland: World Health Organization; 2006. http://www.who.int/quantifying_ehimpacts/publications/preventingdisease. pdf?ua51. Accessed June 19, 2018 24. Laraque D, Trasande L. Lead poisoning: successes and 21st century challenges. Pediatr Rev. 2005;26(12):435–443 25. Testimony of Dr. Mona Hanna-Attisha. House Democratic Steering and Policy Committee. “The Flint Water Crisis: Lessons for Protecting America’s Children.” http://www.democraticleader.gov/ wp-content/uploads/2016/02/Witness-testimonies-Flint-Water-Hearing.pdf. Published February 10, 2016. Accessed June 19, 2018 26. Kennedy C, Yard E, Dignam T, et al. Blood lead levels among children aged ,6 years—Flint, Michigan, 2013-2016. MMWR Morb Mortal Wkly Rep. 2016;65(25):650–654 27. Hanna-Attisha M. What the Eyes Don’t See: A Story of Crisis, Resistance, and Hope in an American City. New York, NY: One World; 2018 28. Campbell C, Greenberg R, Mankikar D, Ross RD. A case study of environmental injustice: the failure in Flint. Int J Environ Res Public Health. 2016;13(10):E951 29. Collaborative on Health and the Environment. Lead’s long shadow: what the story of Flint, Michigan, means for all of us. https://www.healthandenvironment.org/partnership_calls/18216. Published March 8, 2016. Accessed July 2, 2018

PGCH_ch05_081-096.indd 96

8/16/18 9:25 AM

PART

2 Domains of Competency for Global Health

PGCH_ch06_097-114.indd 97

8/9/18 8:11 AM

PGCH_ch06_097-114.indd 98

8/9/18 8:11 AM

99

Preface

From 2012 to 2014, the Academic Pediatric Association (APA) Global Health Task Force developed a consensus statement on faculty competencies needed to provide clinical service, research, and teaching and administration in global settings. The statement was drafted by task force members representing the APA, the Association of Pediatric Program Directors, the American Academy of Pediatrics, the Canadian Paediatric Society, and the Programme for Global Pediatric Research. Competencies were defined, and general competency needs for service, research, and education were described, as follows.1 (See also Appendix A.) This discussion of universal principles and specific competencies is integrated throughout this book. The competencies may be administrative, educational, research, or clinical, but all are important. Readers are urged to overlay these and to use this framework as a starting point. Expansion and evolution of the principles will necessarily follow as competence is gained in mutually respectful and feasible bidirectional collaborations and true partnerships.

Identification and Definitions of Competencies* ▶▶ Values/Ethics: A sense of shared purpose to support the common good in health

care and research that reflects a shared commitment to a safe, efficient, and effective system for these purposes ▶▶ Roles/Responsibilities: Recognition of the limits of one’s professional expertise and the need for cooperation, coordination, and collaboration ▶▶ Communication: A demeanor of openness, with a style that uses opportunities to improve interactions, organization, and functioning ▶▶ Team Building and Teamwork: Relationship building to perform effectively as a team and individually in different team roles ▶▶ Special Considerations: Anticipation of difficulties and unexpected circumstances, including, but not limited to, those arising from the political context, when working in culturally unfamiliar and limited-resource settings

Universal Competencies Common to All Areas of Global Health Several faculty competencies are relevant to all those working in global health, whether in research, education, administration, or clinical practice. These universal competencies are listed as follows under specific domains:

Values/Ethics Faculty will be able to ▶▶ Seek invitations to work with the host population/organization. ▶▶ Establish transparent relationships with host country partners. *Adapted with permission from Academic Pediatric Association. Copyright © 2014.

PGCH_ch06_097-114.indd 99

8/9/18 8:11 AM

100 Part 2: Domains of Competency for Global Health

▶▶ Align goals and objectives with host priorities. ▶▶ Establish bidirectional relationships that mutually benefit all participants. ▶▶ Recognize that public health and infrastructure priorities may be highly valued

priorities that may need to supplant some goals or objectives of the visiting faculty. ▶▶ Engage a local partner to help define priority needs of the local population. ▶▶ Identify the key social determinants of health. ▶▶ Appreciate a variety of health care delivery models including governmental, faith-based, and traditional approaches. ▶▶ Recognize the role(s) of traditional health care professionals. ▶▶ Appreciate the differing cultural and ethical contexts for research, education, administration, and clinical practice; engage in honest discussion about principles that differ between groups; and articulate where compromise is or is not possible.

Roles/Responsibilities Faculty will be able to ▶▶ Respect, value, and work within the host cultural context with mutually defined expectations and roles. ▶▶ Recognize one’s role and work respectfully as visiting faculty at host institutions. ▶▶ Demonstrate cultural respect and sensitivity. ▶▶ Recognize one’s own limitations and strive to appreciate the challenges faced by colleagues working with very limited resources and how that affects their decision-making process. ▶▶ Seek opportunities for continuous learning and self-assessment.

Communication Faculty will be able to ▶▶ Establish bidirectional opportunities, mentorship, teaching, and learning. ▶▶ Engage in active listening. ▶▶ Make efforts to integrate smoothly into the local system. ▶▶ Create locally valuable output (eg, reports, policies, research papers, curricula, educational materials, reference materials). ▶▶ Establish mutual trust among participants by fostering openness and acceptance. ▶▶ Facilitate local, national, and international discussion/presentation of outcomes.

PGCH_ch06_097-114.indd 100

8/9/18 8:11 AM

101 Preface

Teamwork and Team-Based Interaction in the Host Country Faculty will be able to ▶▶ Collaborate in prioritization of goals and objectives. ▶▶ Engage local partners to help define priority needs of the local population. ▶▶ Foster local leadership. ▶▶ Empower local collaborators. ▶▶ Develop and support local interprofessional collaborations. ▶▶ Help identify local resources (eg, financial and political support, potential partners from other disciplines, physical infrastructure). ▶▶ Offer expertise in program monitoring and evaluation. ▶▶ Advocate for child and maternal health in partnership with local and national colleagues. ▶▶ Develop explicit, equitable power-sharing agreements.

Special Considerations Faculty will be able to ▶▶ Anticipate difficulties that may be encountered, including ethical dilemmas, time constraints, burden of work, and concerns for personal well-being. ▶▶ Anticipate unexpected circumstances and cope with high stress levels and frustrations that result from unrealistic expectations. ▶▶ Develop skills in conflict anticipation, awareness, and resolution. ▶▶ Recognize the ongoing process of adjustment when working within a new culture.

Reference 1. Etzel R, Kurbasic M, Staton D, et al. Faculty Competencies for Global Health. Reston, VA: Academic Pediatric Association; 2014. https://academicpeds.org/NewsIncludesOct2014/ pdf/11GlobalHealthTaskForceJune2014.pdf. Published June 5, 2014. Accessed June 19, 2018. Endorsed by: American Academy of Pediatrics. Faculty competencies for global health. Pediatrics. 2015;135(6):e1535

PGCH_ch06_097-114.indd 101

8/9/18 8:11 AM

PGCH_ch06_097-114.indd 102

8/9/18 8:11 AM

103

CHAPTER 6

Global Health Administrative Competencies Cliff O’Callahan, MD, PhD, FAAP

abstract This chapter addresses the knowledge, skills, attitudes, and qualities— the competencies—essential to operate effectively in an administrative role at various levels, from the faculty person to the professional association. These are organized under broad domains.1 This chapter discusses the operational or administrative attributes of key individuals, the larger entities in which they operate, and how they might demonstrate their competency—what they actually do—as a reflection of their knowledge, skills, and attitudes. Administrative competencies in global health might be manifest as the philosophical principles incorporated into their mission, the goals and objectives within their strategic plan, and the policies and managerial decisions they incorporate in their activities. The entities with administrative duties discussed include global health faculty and program directors as well the larger entities of departmental and division structures, the entire health care or university system, and professional societies. Competencies imply action, as opposed to simple statements reflecting knowledge or belief, and, thus, need to be measurable to have relevance. Defining basic global health-related competencies increases transparency and induces change toward the ideal. Clear and measurable competency parameters are consumer friendly; the potential undergraduate, resident, or faculty candidate will incorporate these measures into his or her decision-making process when looking for a position. Moreover, and of critical importance, those on the other end of our attentions—the sites to which we send our students, conduct our research, and expand our institutional reach—can monitor and compare how they fare in a particular partnership by comparing it to a transparent and recognized standard. Thus, benchmarking levels of administrative competency at the broader institutional level can be true to the values of partnership and set the stage for bidirectional interaction.

PGCH_ch06_097-114.indd 103

8/9/18 8:11 AM

104 Part 2: Domains of Competency for Global Health

Teaching Points 1 Faculty members, departments and institutions, and professional associations should define administrative competencies to operate effective and ethically sound global health programs.

2 Some administrative competencies are more pertinent for the faculty member and the department program, while others are more relevant for larger institutional entities.

3 Administrative competencies exist on a spectrum such that individuals,

programs, and institutions can be measured against a particular competency and found to be a novice, competent, proficient, or expert entity.

Context of Administrative Competencies Competency in global health activities is an increasingly frequent subject in the literature, but until recently, it has been limited to addressing the needs of medical students, residents, and public health advanced learners involved in global health activities. Unfortunately, there is not a commonly accepted and validated structure for describing competencies, and so there is great variation when one compares proposed or actual competency frameworks from different fields of study or country (Table 6-1).

Table 6-1. Global Health Competencies APA Values/ethics

x

Roles/responsibilities

x

Communication

x

Team interaction

x

Effective culturally relevant care

x

RCPCH

x

Special needs of migrants and refugees

x

Awareness of alternative health practices

x

Understanding determinants of health

x

THET

WEIGHT

x x

x

Systems thinking

x

Analytic skills

x

Management skills

x

PGCH_ch06_097-114.indd 104

CUGH

x

Manage ills prevalent in diaspora

Advocate for world’s children

MPH

x

8/9/18 8:11 AM

105 Chapter 6: Global Health Administrative Competencies

Table 6-1 (continued) APA

RCPCH

Leadership skills

MPH

CUGH

x

Policy development skills

x

Global disease burden

x

Globalization of health and health care

x

Social and environmental ­determinants

x

x

Capacity strengthening

x

Collaboration, partnering, ­communication

x

x

Ethics

x

x

Professional practice

x

Health equity and social justice

x

Program management

x

Sociocultural and political awareness

x

x x

Strategic analysis

x

x

Strategic shared vision

x x

x

x

Sustainable interventions Respectful and reciprocal ­communication

x

x x

x

x

Organized accountable work

x

Acting responsibly and with integrity

x

Flexibility and innovation in ­partnership

x

Commitment to joint learning

x

Structured partnership with ­equitable benefits

WEIGHT

x

Policy analysis skills

Working in harmony with locals

THET

x

Explicit clarification of expectations

x

x

x x

x

Communication, professionalism, conflict

x

x

Clear expectations about trainees

x

x

Equitable burden and costs Effective supervision, mentoring, feedback

x x

x

Abbreviations: APA, Academic Pediatric Association; CUGH, Consortium of Universities for Global Health; MPH, master of public health; RCPCH, Royal College of Paediatrics and Child Health; THET, Tropical Health and Education Trust; WEIGHT, Working Group on Ethics Guidelines for Global Health Training.

PGCH_ch06_097-114.indd 105

8/9/18 8:11 AM

106 Part 2: Domains of Competency for Global Health

Starting with the most familiar, in general, US medical educators are very aware of the Accreditation Council for Graduate Medical Education (ACGME) competencies applied to health care learners and how they have evolved over time. These same competency domains of patient care, medical knowledge, ­practice-based learning, communication skills, professionalism, and systemsbased practice are often also used to describe faculty in performance evaluations and student/resident feedback of faculty. The proof of knowledge is now being augmented with milestones that place an emphasis on demonstrating how one has incorporated the knowledge, skills, and attitudes into working proficiencies. A number of global health programs within pediatric residencies have used this ACGME structure to develop competencies specifically directed toward the residents in a program or track; the University of Minnesota competency-based curriculum, for example, details the specific goals and objectives as well as the method to evaluate attainment of competence.2 The university built its domains around the already well-understood ACGME structure, making it easier for faculty to incorporate measurement of a participant. Interestingly, the university created objectives and measurement parameters under these familiar domains that are applied to every resident, while others are specifically for residents in a global track. The Consortium of Universities for Global Health has been refining its initial 2007 set of 3 broad domains of knowledge competencies for medical students3— burden of global disease, traveler’s medicine, and immigrant health—through the work of its Global Health Competency Subcommittee, formed in 2013. The consortium first developed 4 levels of student competency to reflect expectations for all students as well as for those involved in global health study to varying degrees. For every student, for whom the applied term is global citizen student, the consortium proposed 13 competencies organized under 8 domains. For those students more deeply involved at the “basic operational/program-oriented” level and above, the consortium created 39 competencies within 11 different domains.4 These 11 domains are logical, thoughtful areas of study, but they bear little outward resemblance to the ACGME competency domains, making it difficult to mesh or compare them. Competencies for master’s level public health learners that respond to the expressed needs of the organizations and agencies hiring global public health graduates have been described and use yet another set of domains—2 knowledge domains (broad determinants of health and health-relevant systems/service development) and 5 skill domains (analytic, management, leadership, policy analysis, and policy development competencies). Pfeiffer et al5 introduce domains not previously described for learners and which would be useful for higher level administrative competencies by faculty, departments, and institutions because they emphasize skills critical in administering programs and partnerships. The Royal College of Paediatrics and Child Health developed a set of competencies for the practicing UK pediatrician.6 It is important to realize that the Royal College Global Child Health Curriculum Working Group developed these

PGCH_ch06_097-114.indd 106

8/9/18 8:11 AM

107 Chapter 6: Global Health Administrative Competencies

5 mostly clinical, broad competencies for all pediatricians and not just global health faculty. The Academic Pediatric Association (APA) Board of Directors incorporated global health into its strategic plan and then commissioned the formation of a Global Health Task Force in 2010. Two years later, this group charged themselves to create a set of competencies pertinent to faculty members involved in global health-related education and research. The task force decided not to use the familiar ACGME framework because it believed that the framework did not fit the unique needs of faculty. Rather, it modified the domains, as suggested by Milner et al,7 and applied them to 5 broad areas that pertain to a global health faculty member: values/ethics, roles/responsibilities, communication, team interaction, and special considerations. The final set of competencies used these domains to organize 91 granular competencies into generalized, research, education, administrative, and clinical categories.8 This is the first presentation of purely administrative competencies for the global health faculty (Appendix A).1 No competencies have been described in the literature that speak specifically to the administration of a clinical department, a research group, a university or hospital system, or academies. However, a growing body of literature describes components that are felt to be critical when developing and administering partnerships through which global health activities occur.9,10 These administrative skills go beyond the competencies directed toward medical learners, resonating more with those described in public health,5 and include advanced communication and management techniques on a foundation of clearly expressed trust, respect, and defined mutual benefits.10,11 The ethical guidelines, developed by the 15 people who comprised the Working Group on Ethics Guidelines for Global Health Training and addressed to institutions and sponsors, could readily be transformed into competencies.12 The Health Partnership Scheme within the British charity organization Tropical Health and Education Trust (THET)13 has distilled many of the principles discussed in its publications into a set of ideals, its “principles of partnership,” that are linked to tools and statements that are measurable. Expressed slightly differently, these principles could be described as competencies and include having a strategic shared vision, working in harmony with local and national entities, enacting effective and sustainable interventions, engaging in respectful and reciprocal negotiation, producing organized and accountable work, acting responsibly and with integrity, maintaining flexibility and innovation within the partnership, and making a commitment to joint learning. It is also important to consider the issue of competency along the continuum and attempt to apply standards and approaches being used in medical education to evaluation at the administrative level. It is easier to conceptualize a faculty member, perhaps a global health program director, moving from novice to expert as he or she accumulates experiences and develops a curriculum and program according to the competency guidelines of the APA (described previously). In a similar manner, we must think of a department, institution, or the American

PGCH_ch06_097-114.indd 107

8/9/18 8:11 AM

108 Part 2: Domains of Competency for Global Health

Academy of Pediatrics (AAP) as moving from novice to advanced beginner, competent, proficient, and expert as it demonstrates the incorporation of administrative policies and procedures around its institutional relationship with partners. Such an approach necessarily leads to the issue of measurement to determine where along that continuum an institution exists at a particular moment, which, in turn, leads us to consider the criteria on which those measurements are made. If the ethical and partnership guidelines promoted by organizations are to be transformed into competencies, they must be worded in such a way that an institution’s actions can be measured, much like THET principles come with measures. There is also precedence for this in other areas that is born from a combination of advocacy, promoting excellence, competition, and avoiding negative behavior that can have dire publicity consequences for a group. US nonprofits, such as United Way, use a set of guiding principles to prove to donors that they are following best accepted practices in fund-raising and disbursing monies appropriately and are not diverting an embarrassing amount to administration and leadership. Organizations like Charity Navigator, CharityWatch, and Transparency International can use Internal Revenue Service tax form 990, the nonprofit’s Web site, and other public information to generate a measurement of best administrative practices. Their measurement domains include programmatic and administrative expenses, funding expenses, and efficiency, all with defined parameters, along with accountability and transparency. Thus, these evaluation organizations rate nonprofits along a spectrum of administrative competency, much like faculty using milestones to assess a learner. On the international front, also because of significant discussion surrounding the appropriateness of how donated funds were used and the kinds of interventions made, a set of guiding principles for international nongovernmental organizations (NGOs) was created in 2014. The Core Humanitarian Standard14 has a set of 9 commitments or domains that are paired with explanations and measures so that an NGO responding to a humanitarian crisis may be evaluated and deemed competent. The AAP and American Board of Pediatrics are working together on envisioning the role of these institutions and the members they represent. The Royal Society has a working group developing proposed global health competencies that would be applied to every UK pediatrician.6

Case Example 1: Competencies in the Global Health Space The ability to transparently demonstrate strong administrative competencies wields strength. Institutions in high-income nations, such as US nonprofits and international NGOs, compete with each other for learners, faculty, funding, access to research sites, and reputation. Residency and fellowship programs with global health opportunities and tracks compete to attract highly ranked candi-

PGCH_ch06_097-114.indd 108

8/9/18 8:11 AM

109 Chapter 6: Global Health Administrative Competencies

dates. Larger institutions are clearly jockeying for position on the global health stage out of a mix of altruism, attraction of motivated learners and faculty, research and partnership sites, economic opportunities and influence, and reputation on the international stage. Our academies compete to have their publications and conferences sought out on the international market. The faculty person, department, or institution that can prove competence as measured by a set of accepted standards gains a competitive advantage. The following example might help to illustrate this: Department A advertises that it has global health opportunities for residents. However, there is no faculty person with significant experience in global work or sufficient, protected time to develop and oversee such a program; moreover, there is no defined track, curriculum, or predeparture requirement and orientation. Department A has a partnership site but no memo of understanding with that hospital, and faculty have been able to visit the site themselves only intermittently. Meanwhile, Department B advertises a global health track with a curriculum taught by dedicated faculty. It has a partnership site and a memo of understanding that defines roles, responsibilities, and means to resolve conflict. Also, Department B has a mechanism for sending faculty to collaborate with host faculty and has developed a system of institutional faculty appointment, access to an electronic library, and some financial assistance to attend conferences. Selected host site residents are supported for an observership rotation in proportion to the number of residents who visit from the sending institution. They have been using the THET principles as a guidepost for how they are administering their partnership and are about to post their progress on the program Web site. Setting an expectation of high competency for an entity as to how it administers its global health program and partnerships creates an urgency to have faculty and administrators with the needed skill set. It requires institutional support to make internal changes and dedicated funds to achieve goals. Appropriate and thoughtful materials already exist from which to craft administrative competencies for residency and fellowship programs, medical institutions, and academies. It will be critical to include low- and middle-income nations’ perspectives when developing and finalizing competencies in global health. In fact, the process should be done in conjunction with colleagues in those resource-limited sites, with participation from representatives of vulnerable populations and with the organizations that oversee or hire learners. We can avoid the criticism raised over unilateral planning15 by following the precedence of others who have successfully sought to create transparent, mutually beneficial partnerships with sound administrative processes.1,16 Similarly, it will be imperative to include the perspectives of all parties when evaluating how successful they are with many of the suggested competencies under the domains of respectful communication, equitable management, transparent financial and research negotiations, and joint benefits.

PGCH_ch06_097-114.indd 109

8/9/18 8:11 AM

110 Part 2: Domains of Competency for Global Health

Case Example 2: Partnerships, Collective Effect, and Sustainability in Haiti Contributed by Rosemary Ortlieb-Padgett, Sally Crimmins Villela, Samantha Hackney, and Pierre-André Noel, JD In November 2015, the State University of New York (SUNY) began exploring a long-term partnership in Haiti as part of its Caribbean engagement initiative. The SUNY global land-grant mission, whereby SUNY improves the lives of the people of New York and the world through education, research, and service, underscores that the most pressing problems of the day require cross-border and cross-disciplinary solutions. For SUNY to fulfill its mission to deliver educational services of the highest quality, its faculty and students must be engaged in the search for these solutions. Haiti is our neighbor and represents the fourth-largest population of Caribbean migrants to the United States. New York is home to a large Haitian community, second only to Florida. Therefore, working with Haiti, for Haiti, is embedded in the SUNY mission. Through the SUNY Learning through Development approach, our work in Haiti is supported by campus interaction with Haitian communities, organizations, and local partners. By way of this interaction, reciprocity in learning becomes the cornerstone of partnership sustainability. Working with the support of the W.K. Kellogg Foundation, SUNY has embarked on a partnership that includes multiple campuses and several organizations. The project concept, now referred to as the Sustainable Village and Learning Community (SVLC), will be located in Arcahaie, Haiti, one of Kellogg’s priority regions. Through a collective impact lens, the SUNY Office of Global Affairs, SUNY campuses, and strategic partners will focus on building educational, economic, and social programming in Arcahaie. One of the earliest partnerships forged while developing the SVLC project was with the Haiti Development Institute (HDI). An initiative of The Boston Foundation, HDI was established as an expression of the greater Boston community’s concern for the people of Haiti and their local Boston friends and relatives. The HDI is built on the belief that an integrated approach to development is necessary to usher in real social change, and it works to build sustainable communities by supporting local leaders, strengthening organizations, and connecting the nonprofit, philanthropic, and social enterprise sectors to achieve transformative systemic effect. The mission and purpose of HDI and SUNY are similar in that they value the connection between communities in Haiti and in the United States. The Haiti Funders Conference, an annual event conceived and organized by the HDI, focuses on the UN Sustainable Development Goals to encourage increased collaboration and coordination in philanthropy to Haiti. While

PGCH_ch06_097-114.indd 110

8/9/18 8:11 AM

111 Chapter 6: Global Health Administrative Competencies

there is a long tradition of private philanthropy investing in Haiti, most of the funding over the past decade has tended to be reactionary, with a short-term focus on disaster relief. Therefore, the goal of the Haiti Funders Conference was to increase not only the amount but also the sustained effect of philanthropy and social investment in Haiti. The third annual Haiti Funders Conference, “Achieving Sustainability in Haiti,” took place on November 9 and 10, 2016. Cosponsored by the HDI, Fondasyon Konesans Ak Libète (the Foundation for Knowledge and Liberty), and SUNY, the conference was very well attended and provided a focus for energy and emotion after a charged presidential election night. The keynote speaker, Ambassador Paul Altidor, suggested that a new narrative is needed for Haiti—one that is collaborative and focused on sustainable partnerships. The ambassador observed that too often, there is no space for collaboration with the Haitian people, that people see Haiti as an object of pity, only as a place we can give something to. He commented that, for all the resources and commitments to Haiti, there are “not enough points on the board.” Over the 2 days of the conference, participants were shown the new narrative through the inspiring work of the speakers and participants. These conversations provided deeper insights into possibilities to achieve sustainability in Haiti. One crosscutting theme across the conference was the need for more collaborative approaches to philanthropy and development in Haiti. Collaboration, which is difficult in emergency situations and, thus, has not been a characteristic of philanthropic activities in Haiti, must become the standard in Haiti. This lack of coordination has produced piecemeal solutions to complex problems. Speakers highlighted that collaboration is most effective and leads to administrative clarity when partners have ▶▶ Synergy with their areas of focus and vision of their work ▶▶ Different strengths and capabilities and defined roles for each partner ▶▶ Clear goals for the project as well as what each partner wants to achieve ▶▶ Agreement and formalization of the needed resources, work, and funding ▶▶ Trust in their partner’s expertise and capabilities ▶▶ A clear transition plan for the end of the collaboration ▶▶ An understanding of the local, municipal, and central government’s participation (or nonparticipation) ▶▶ Strong accountability of funding Conversely, collaboration is least effective when ▶▶ Time horizon is too short to achieve desired goals. ▶▶ Partners have overlapping expertise, roles, or responsibilities. ▶▶ One partner’s project ends before the other’s. ▶▶ Funders lack flexibility to allow for innovation or modification of a project.

PGCH_ch06_097-114.indd 111

8/9/18 8:11 AM

112 Part 2: Domains of Competency for Global Health

While it is clear that collaborative approaches are necessary for systemic change in Haiti to take hold, funders and implementers need to be thoughtful in their approach to collaboration and cognizant of its limitations. The second theme to emerge from the conference was the need for greater local ownership and participation in development for projects and interventions to be sustainable over time. Most aid to Haiti has been delivered in the form of short-term projects with little thought as to their sustainability. Therefore, it should come as no surprise that the lack of systemic development change in Haiti can be largely attributed to the lack of investment in building Haitian civil society and strong Haitian institutions. Speakers and participants at the conference cited the lack of capacity of many Haitian civil society organizations as a barrier to transitioning projects to local ownership. Speakers and participants made the following recommendations: ▶▶ Building the skills and capabilities of locals ▶▶ Preparation including funding, training, and oversight ▶▶ Assistance and support with everyday tasks ▶▶ Coordination between NGOs so that Haitian partners aren’t conflicted about who to work with It is clear that there is much work to be completed to build the capacity of local communities and organizations to guide and lead their own development. Sustainable development will continue to elude Haiti without donors and implementers working toward the goal of community-led development. Through partnership, collaboration, and deep connections to local communities, the HDI, SUNY, and SVLC partners endeavor to join forces where work is currently highly siloed. Collective effect is the methodology and critical factor in achieving positive and sustainable development goals in Haiti, New York, Boston, and globally. The SVLC is an example of a collaborative and community-driven approach often discussed and rarely implemented. It relies on the principles articulated in the APA administrative competencies.

Gaps and Opportunities Much has been written about competencies for medical students, residents, and public health advanced learners involved in global health activities. The APA faculty competencies are the only product of discussion about faculty involved in global health activities, but they have not been communicated and used as much as they could. Furthermore, no set of guidelines or competencies have been proposed that might challenge programs and institutions that have global health programs to prove themselves and be compared with each other. To increase the transparency and compliance/competency of a professional society, an institution, or one of its programs, it will be necessary to require an independent, external evaluation that can use information that is made available, or have programs report on their own level of administrative competence.

PGCH_ch06_097-114.indd 112

8/9/18 8:11 AM

113 Chapter 6: Global Health Administrative Competencies

Conclusion Global health-related administrative competencies have been developed for faculty involved in global health programs, but they are underutilized and there is no mechanism for faculty to clearly demonstrate their competence. There is an opportunity and need to define a set of similar but broader competencies for higher administrative levels that will create competition and excellence among programs and institutions to demonstrate how well they are performing. Dissemination of the principles discussed in this book will be part of the accountability we jointly hold for transforming our global education and research agenda.

References 1. Etzel R, Kurbasic M, Staton D, et al. Faculty Competencies for Global Health. Reston, VA: Academic Pediatric Association; 2014. https://academicpeds.org/NewsIncludesOct2014/ pdf/11GlobalHealthTaskForceJune2014.pdf. Published June 5, 2014. Accessed June 19, 2018. Endorsed by: American Academy of Pediatrics. Faculty competencies for global health. Pediatrics. 2015;135(6):e1535 2. Howard CR, Gladding SP, Kiguli S, Andrews JS, John CC. Development of a competency-based curriculum in global health. Acad Med. 2011;86(4):521–528 3. Houpt ER, Pearson RD, Hall TL. Three domains of competency in global health education: recommendations for all medical students. Acad Med. 2007;82(3):222–225 4. Jogerst K, Callender B, Adams V, et al. Identifying interprofessional global health competencies for 21st-century health professionals. Ann Glob Health. 2015;81(2):239–247 5. Pfeiffer J, Beschta J, Hohl S, et al. Competency-based curricula to transform global health: redesign with the end in mind. Acad Med. 2013;88(1):131–136 6. Williams B, Morrissey B, Goenka A, Magnus D, Allen S. Global child health competencies for paediatricians. Lancet. 2014;384(9952):1403–1405 7. Milner RJ, Gusic ME, Thorndyke LE. Perspective: toward a competency framework for faculty. Acad Med. 2011;86(10):1204–1210 8. Einterz RM, Kimaiyo S, Mengech HN, et al. Responding to the HIV pandemic: the power of an academic medical partnership. Acad Med. 2007;82(8):812–818 9. John CC, Ayodo G, Musoke P. Successful global health research partnerships: what makes them work? Am J Trop Med Hyg. 2016;94(1):5–7 10. Rominski SD, Yakubu J, Oteng RA, et al. The role of short-term volunteers in a global health capacity building effort: the Project HOPE-GEMC experience. Int J Emerg Med. 2015;8:23 11. Lakhoo K, Msuya D. Global health: a lasting partnership in paediatric surgery. Afr J Paediatr Surg. 2015;12(2):114–118 12. Crump JA, Sugarman J; Working Group on Ethics Guidelines for Global Health Training (WEIGHT). Ethics and best practice guidelines for training experiences in global health. Am J Trop Med Hyg. 2010;83(6):1178–1182 13. Tropical Health and Education Trust. Principles of Partnership. http://www.thet.org/healthpartnership-scheme/resources/principles-of-partnership. Accessed June 19, 2018 14. Core Humanitarian Standard. The Standard. http://www.corehumanitarianstandard.org/thestandard. Accessed March 15, 2018 15. Eichbaum Q. The problem with competencies in global health education. Acad Med. 2015;90(4):414–417 16. Monroe-Wise A, Kibore M, Kiarie J, et al. The Clinical Education Partnership Initiative: an innovative approach to global health education. BMC Med Educ. 2014;14:1043

PGCH_ch06_097-114.indd 113

8/9/18 8:11 AM

.

PGCH_ch06_097-114.indd 114

8/9/18 8:11 AM

115

CHAPTER 7

Global Health Education Faculty Competencies Mirzada Pasic Kurbasic, MD, MS, FAAP

abstract In high-income countries, global health has emerged as a core component of medical education across most medical disciplines. Approximately two-thirds of US pediatric residency programs offer the opportunity to complete short-term global health electives in low- and middle-income countries,1 and about one-fifth of residents pursue such an elective. Internal medicine, emergency medicine, and pediatrics now all offer formal fellowship opportunities in international (ie, global) health. Global health opportunities among Accreditation Council for Graduate Medical Education–accredited pediatric subspecialty fellowship programs are limited but increasing, as noted by its online report.2 Global health has become a branch of science supporting institutionalized education. A rapidly expanding experience indicates that effective global health education should train students to understand global health statuses, to investigate global and local health issues with a global perspective, and to devise interventions to deal with these issues.3

Teaching Points 1 Competency is a unique set of applied knowledge, skills, and other attributes grounded in theory and evidence for the broad practice of public health.

2 The competency domains for resident trainees, outlined in the Academic

Pediatric Association Global Health Task Force document, include values/ ethics, roles/responsibilities, communication, and team building/teamwork.

PGCH_ch07_115-120.indd 115

8/20/18 7:59 AM

116 Part 2: Domains of Competency for Global Health

Competencies in Academic Medicine General pediatric residency education has embraced competency-based medical education (see Appendix C) for more than a decade. Competency-based medical education in pediatric education has recently expanded to include milestones, a series of brief narratives describing behaviors at each performance level for a given competency across the developmental continuum, from entering medical student through expert practitioner. Entrustable Professional Activities are the routine units of work that define a profession and, thus, embed the context-­ independent competencies and their milestones in a clinical context.4 An emerging literature describes the pediatric global health education competency domains recommended for trainees, both students and residents, with an interest in global health.5–13 By contrast, there are few published articles addressing competencies for academic faculty,14 and none that define competencies for faculty engaged in the practice of global health. Developing competent individuals is best achieved through training in competent care delivery systems by competent educators.4 In 2010 the Academic Pediatric Association (APA) established a Global Health Task Force to provide a forum for communication and collaboration for diverse pediatric academic societies and groups to advance global child health. Recognizing that none of the available articles address or define competencies for faculty, the task force developed a set of global health competencies for pediatric faculty.15 This document has been endorsed by the Canadian Paediatric Society and the American Academy of Pediatrics. It is envisioned as an evolving document, consistent with the evolving nature of the science of global health. The document provides faculty competencies in all areas of global health partnership: research, education, administrative partnership, and clinical collaborations. The universal competencies are listed in the Preface of Part 2. This chapter will focus on educational competencies as delineated in the original APA Global Health Task Force document.15 A necessary complement to the competencies presented here is the requisite faculty development in support of the application of the competencies.16

Competency Domains in Global Health Although health professions worldwide are shifting to competency-based education, no common taxonomy for domains of competence and specific competencies currently exists.17 The education community has struggled with the common definitions of the specific terminology of competence and competency-based medical education.4 The need for greater rigor in terms of global health education was revealed by the finding from a survey of clinical preceptors at international sites where US students and residents completed their elective, who noted that these learners were not adequately prepared for the rotation.18 The APA Global Health Task Force reviewed competency definitions and accepted that of the Association of Schools and Programs of Public Health (ASPH) as most applicable for global health. The Association of Schools and Programs of Public Health defines competency as “a unique set of applied knowledge, skills and other attri-

PGCH_ch07_115-120.indd 116

8/20/18 7:59 AM

117 Chapter 7: Global Health Education Faculty Competencies

butes grounded in theory and evidence for the broad practice of public health.”19 The competency domains in this document, including values/ethics, roles/­ responsibilities, communication, and team building/teamwork, were adapted primarily from existing collaborative practice competencies.14 We first identify and define the general categories of competencies and then list the specific educational competencies.

Identification and Definitions of Competencies

Reprinted with permission from the Academic Pediatric Association.15

1. Values/Ethics: A sense of shared purpose to support the common good in health care and research that reflects a shared commitment to a safe, efficient and effective system for these purposes 2. Roles/Responsibilities: Recognition of the limits of one’s professional expertise, and the need for cooperation, coordination and collaboration 3. Communication: A demeanor of openness, with a style that utilizes opportunities to improve interactions, organization and functioning [An important role to be emphasized relative to global medical education is the role of convening. Reducing fragmentation, coalescing innovations in global medical education is urgently needed.] 4. Team Building and Teamwork: Relationship building to perform effectively as a team and individually in different team roles 5. Special Considerations: Anticipation of difficulties and unexpected circumstances when working in culturally unfamiliar and limited resource settings Education Competencies E1. Values/Ethics: Faculty will be able to... E1.1 Design and implement ethically sound, culturally appropriate, relevant, and sustainable educational programs that are mindful of differences in resources and cultural paradigms E1.2 Anticipate difficulties that trainees may encounter during global health education electives and related experiences including ethical dilemmas, time constraints, knowledge limitations, and personal concerns E1.3 Provide mentorship, counseling and support for trainees before, during, and after global health experiences. E2. Roles/Responsibilities: Faculty will be able to... E2.1 Demonstrate the necessary content knowledge to develop and deliver curricula in global child health E2.2 Utilize academic methodologies in the development of educational programs, including emphasis on evaluation, process improvement, assessment of impact, and scholarly output E2.3 Utilize the resources available to effectively deliver an educational program E2.4 Ensure that curricula are integrated within a pre-existing infrastructure and meet the needs of the learners E2.5 Teach through role modeling and use of educational best practices

PGCH_ch07_115-120.indd 117

8/20/18 7:59 AM

118 Part 2: Domains of Competency for Global Health

E2.6 Provide mentorship and teaching in medical education to domestic and global partner faculty and trainees. E3. Communication: Faculty will be able to… E3.1 Determine the needs, resources, cultural paradigms, and educational levels of the target audience to shape the content and venue for educational programs E3.2 Establish open communication with educational partners and trainees to ensure that learning objectives are clearly defined and venues are available for open and honest feedback E3.3 Develop a shared educational mission and vision with local and global educational partners with an emphasis on training new generations of trainers and providers. E4. Teams/Teamwork: Faculty will be able to... E4.1 Design educational programs in partnership with target audiences including bidirectional educational opportunities with global partners whenever possible E4.2 Collaborate with educational partners and trainees during all stages of education, including program development, implementation, evaluation, and scholarly output.

Future Directions Within every field in biomedicine individuals are assigned the role of mentor, but often the specific criteria assessing performance in this role is lacking.20 Likewise, global health faculty should be guided and assessed by specific expectations, metrics, and standards for performance. The APA Global Health Task Force competencies provide expectations to serve as an assessment platform for faculty performance in global health. However, specific tools and standards are needed, and by definition, competence changes with time, experience, and setting. Thus, the document should be regarded as a “living document” that will require continuous revision. Evidence that clarifies the best approaches to teaching and learning global health for medical trainees remains limited and represents a leadership opportunity for professional pediatric organizations and pediatric training programs.21 Learner experiences and expectations about faculty competences at home and abroad should also be researched more extensively.

Acknowledgment Faculty competencies for global health education as the part of the APA Global Health Task Force document were defined by the following contributors: Education Group Leaders: Melanie Anspacher, Cindy Howard, Christiana Russ, Nicole St. Clair Contributors: Tanya Arora, Merrian Brooks, Sabrina Butteris, Jennifer Chapman, Keri Cohn, Sophie Gladding, Areej Hassain, Leah Kern, Susan Leib, Mary Ann Lofrumento, Carolyn Moneymaker, Andy ­Muelenaer, Mike Pitt, Donna Staton, and Stephen Warrick

PGCH_ch07_115-120.indd 118

8/20/18 7:59 AM

119 Chapter 7: Global Health Education Faculty Competencies

Author Comment For definitions of international health and global health (see Appendix C for terms) this author recommends the article published by Koplan et al.22

References 1. Butteris SM, Schubert CJ, Batra M, et al. Global health education in US pediatric residency programs. Pediatrics. 2015;136(3):458–465 2. Dixon CA, Castillo J, Castillo H, Hom KA, Schubert C. Global health opportunities within pediatric subspecialty fellowship training programs: surveying the virtual landscape. BMC Med Educ. 2013;13:88 3. Chen X. Understanding the development and perception of global health for more effective student education. Yale J Biol Med. 2014;87(3):231–240 4. Carraccio CL, Englander R. From Flexner to competencies: reflections on a decade and the journey ahead. Acad Med. 2013;88(8):1067–1073 5. ten Cate O, Scheele F. Competency-based postgraduate training: can we bridge the gap between theory and clinical practice? Acad Med. 2007;82(6):542–547 6. Frenk J, Chen L, Bhutta ZA, et al. Health professionals for a new century: transforming education to strengthen health systems in an interdependent world. Lancet. 2010;376(9756):1923–1958 7. Battat R, Seidman G, Chadi N, et al. Global health competencies and approaches in medical education: a literature review. BMC Med Educ. 2010;10:94 8. Arthur MA, Battat R, Brewer TF. Teaching the basics: core competencies in global health. Infect Dis Clin North Am. 2011;25(2):347–358 9. Howard CR, Gladding SP, Kiguli S, Andrews JS, John CC. Development of a competency-based curriculum in global child health. Acad Med. 2011;86(4):521–528 10. Lahey T. Perspective: a proposed medical school curriculum to help students recognize and resolve ethical issues of global health outreach work. Acad Med. 2012,87(2):210–215 11. Suchdev PS, Shah A, Derby KS, et al. A proposed model curriculum in global child health for pediatric residents. Acad Pediatr. 2012;12(3):229–237 12. Pfeiffer J, Beschta J, Hohl S, Gloyd S, Hagopian A, Wasserheit J. Competency-based curricula to transform global health: redesign with the end in mind. Acad Med. 2013;88(1):131–136 13. Eichbaum Q. The problem with competencies in global health education. Acad Med. 2015;90(4):414–417 14. Milner RJ, Gusic ME, Thorndyke LE. Perspective: toward a competency framework for faculty. Acad Med. 2011;86(10):1204–1210 15. Etzel R, Kurbasic M, Staton D, et al. Faculty Competencies for Global Health. Reston, VA: Academic Pediatric Association; 2014. https://academicpeds.org/NewsIncludesOct2014/ pdf/11GlobalHealthTaskForceJune2014.pdf. Published June 5, 2014. Accessed June 20, 2018. Endorsed by: American Academy of Pediatrics. Faculty competencies for global health. Pediatrics. 2015;135(6):e1535 16. Suchdev PS, Breiman RF, Stoll BJ. Global child health: a call to collaborative action for academic health centers. JAMA Pediatr. 2014;168(11):983–984 17. Englander R, Cameron T, Ballard AJ, Dodge J, Bull J, Aschenbrener CA. Toward a common taxonomy of competency domains for the health professions and competencies for physicians. Acad Med. 2013;88(8):1088–1094 18. Lukolyo H, Rees CA, Keating EM, et al. Perceptions and expectations of host country preceptors of short-term learners at four clinical sites in sub-Saharan Africa. Acad Pediatr. 2016;16(4):387–393 19. Association of Schools of Public Health. What is a competency? http://www.asph.org/document. cfm?page51146. Accessed February 11, 2016 20. Kuftinec MM. Who monitors the mentors? Acta Med Acad. 2015;44(2):97–101 21. Weaver MS, Johnson LM. International child health competencies. JAMA Pediatr. 2015;169(7):621–622 22. Koplan JP, Bond TC, Merson MH, et al. Towards a common definition of global health. Lancet. 2009;373(9679):1993–1995

PGCH_ch07_115-120.indd 119

8/20/18 7:59 AM

PGCH_ch07_115-120.indd 120

8/20/18 7:59 AM

121

CHAPTER 8

Global Health Research Competencies Ruth A. Etzel, MD, PhD, FAAP

abstract Healthy children are the foundation of sustainable development. Major research advances have resulted in significant advances in infant and child health, but health inequities among children in high-income, upper-middle–income, and low- and middle-income countries persist. For children in all countries of the world, research remains vitally important. Despite the importance of research, communities may be wary of participating in research for at least 5 reasons: they may remember a history of unethical and dangerous research activities; they may have different values than the researchers; they may have different ways of knowing than the researchers; they may have different views about the significance and appropriate uses of samples of their blood or other tissue specimens; and they may fear stigmatization from participation in research studies. The Academic Pediatric Association Global Health Task Force developed a consensus statement on faculty competencies, including those needed for research in global settings. Researchers from all involved countries should agree on the research goals of the involved institutions that align with their respective priorities. They should translate the research into action benefiting the host country. Prioritization should be place on those health research activities that address priority health concerns of the community, region, or nation they have the mandate to serve. Best practices for faculty and students are to follow the principles of community-based participatory research (see chapters 1–5). Concerted efforts of international organizations, ministries of health of governments, multinational donors, academic centers, nongovernmental organizations, and communities will be required to reach the United Nations Sustainable Development Goals. The role of community-based participatory research will be integral to success.

PGCH_ch08_121-132.indd 121

8/9/18 8:14 AM

122 Part 2: Domains of Competency for Global Health

Teaching Points 1 Child health research is critical to health promotion and disease prevention efforts and has led to major public health advances.

2 Local communities may be wary of participating in research. They may be

unsure whether they can trust researchers, have different values than the researchers, have a different type of knowledge base than that offered by standard research methods, have different views about the significance and appropriateness of blood and tissue samples, and fear stigmatization from their participation in research.

3 Health research activities should address the priority health concerns of the community, region, or nation they have the mandate to serve and should align with other global strategies.

4 Research participants should understand that the research results are

intended to benefit the participants and the community in which they live.

5 Community-based participatory research is integral to successfully achieving the Sustainable Development Goals.

Research Competencies Listed: Global Health Research Competencies Interest in global health research from faculty and students has expanded dramatically in the past 25 years. Global health electives are selected by one-fifth of US medical students.1 Many students undertake research as part of their global health experience.2 Faculty must be prepared to serve as effective supervisors and mentors for global health research. To address this need, from 2012 to 2014, the Academic Pediatric Association (APA) Global Health Task Force developed a consensus statement on faculty competencies needed to provide clinical service, research, and teaching and administration in global settings. (Please see Appendix A.) The statement, which was drafted by task force members from the APA, the Association of Pediatric Program Directors, the American Academy of Pediatrics, the Canadian Paediatric Society, and the SickKids Programme for Global Paediatric Research, was released at the Pediatric Academic Societies annual meeting in May 2014.3 It included the following global health research competencies: ▶▶ Values/Ethics: Faculty will be able to • Align research with the research goals of the host institution/collaborators/ country. • Seek opportunities to merge research projects with public service for the host population. • Design research that informs program improvement.

PGCH_ch08_121-132.indd 122

8/9/18 8:14 AM

123 Chapter 8: Global Health Research Competencies

▶▶ Roles/Responsibilities: Faculty will be able to

• Build a bidirectional research partnership working with local stakeholders. • Maintain a network of research stakeholders. • Help the host academic community collaborate with local public health personnel to focus on social and economic determinants of health. ▶▶ Communication: Faculty will be able to • Translate the research into action benefiting the host country. • Publish research in peer-reviewed journals with equitable distribution of authorship. ▶▶ Teamwork and Team-Based Interaction: Faculty will be able to • Incorporate development of sustainable research infrastructure with collaborative local partners. • Provide research skills that aid in accomplishing the tasks of the local team. • Recognize and support and otherwise collaborate in partnership with local researchers in the development of their research questions and ideas. • Integrate research into the existing local job market and economy. • Advocate for sharing of research resources (references, educational materials, institutional research boards, statistical analyses) among all partners. • Build an implementation and evaluation plan into research projects that assesses effect on the host population and host workers. • Build relationships and collaborate with other visiting groups and consolidate research when possible. • Identify funding opportunities to address local needs and support sustainable change.

History and Context of Health Research For children in all countries of the world, research is critical to health promotion and disease prevention efforts and has led to major public health advances.4 In the past 25 years, there have been remarkable developments in global health research. Research led to vaccinations that saved the lives of children around the globe. Research led to our current understanding that exposure to tobacco causes cancer and a variety of respiratory diseases, including among children whose exposure is involuntary. Research led to cures for childhood cancer. Research led to a better understanding of HIV and to the development of drugs that decreased the rate of transmission of HIV from mother to child. Although major advancements have been achieved through research to improve child health, children across the globe continue to experience serious and fatal health conditions that need to be better understood.5,6

PGCH_ch08_121-132.indd 123

8/9/18 8:14 AM

124 Part 2: Domains of Competency for Global Health Under-five mortality rate by Sustainable Development Goal region, 1990 and 2016 1990 2016 SDG target for 2030

183

176

167

150 124 93

100

49

50

75 55

46

68

57

79 63 42

28

18

16

41

14 6

10

4

sia

W es

Ce n

tra

lA

Su b-

Sa ha ra n

Af ric a Oc te a nd rn ea As ni So La a* ia ut tin an he d Am r n No Ea As er st rth ia ica er er n a n As nd Af ia th ric an e a d Ca So No rib ut th b hea er Ea n n st Am e r Au er n ica As st ra ia an lia d a E nd Le ur as op Ne La td e nd w e Ze lo ve ck a l o la ed pe nd d de Sm co ve u al lo nt l is pi rie ng la s nd co de un ve tir lo es pi ng st at es

0

ld

79 74

W or

Deaths per 1,000 Live Births

200

*Oceania refers to Oceania excluding Australia and New Zealand.

Figure 8-1. Under-5 Mortality Declined in All Regions Between 1990 and 2016 Reproduced from United Nations Inter-agency Group for Child Mortality Estimation. Levels & Trends in Child Mortality: Report 2017, Estimates Developed by the UN Inter-agency Group for Child Mortality Estimation. New York, NY: United Nations Children’s Fund; 2017. https://www.unicef.org/publications/files/Child_ Mortality_Report_2017.pdf. Accessed June 20, 2018. © Copyright 2017 United Nations Children's Fund.

There are still massive inequities between rich and poor children as documented by a variety of measures, including younger-than-5 mortality rates (Figure 8-1). The US younger-than-5 mortality rate (7 deaths per 100,000 live births) is less than 10 percent of the younger-than-5 mortality rates in the 6 countries in Africa that exceed 100 deaths per 1,000 live births.5 Research is needed to better understand how to eliminate health inequities. Important efforts have been made to enhance research capacity in low- and middle-income countries. In terms of funding, development assistance in health (only some of which supports research) increased from US $6.9 billion in 1990 to US $35.9 billion in 2014.7 There are now more than 100 multilateral partnerships, agencies, and initiatives in global health.8 It is clear that the investments in global health research have benefitted children’s health, but research does not come without risk. Although the benefits of participation in research have been substantial, the risks are not negligible. It is crucial to understand these risks from the point of view of communities. Some evidence suggests an increasing disconnection of global health research from the needs of communities. It may result in fewer people responding to surveys, participating in randomized controlled trials, or volunteering to have their

PGCH_ch08_121-132.indd 124

8/9/18 8:14 AM

125 Chapter 8: Global Health Research Competencies

blood drawn. Research in some areas has lost its strong roots in solving problems for real people in real communities. One reason that research is not always embraced by communities under study is that communities may be unsure whether they can trust researchers. In the past, some people have been asked to participate and unknowingly agreed to join health research studies that put their individual health and/or their community’s health and well-being at risk. Examples that occurred among American Indian and Alaska Native people will be described.

Case Example Alaska is home to hundreds of different communities of indigenous Alaska Native people. In the past, Alaska Native people were subjected to unethical and dangerous research activities sponsored by the US government.9–11 Exposure of those past practices has created a communal sense of wariness among Alaska Native people about research and researchers. The history of the distrust between American Indian and Alaska Native people and the US government is well described in Broken Promises: Evaluating the Native American Health Care System, a 2004 report by the US Commission on Civil Rights12: “In Eliminating Health Disparities: Conversations with American Indians and Alaska Natives, Michael Bird, a member of the Santo Domingo and San Juan Pueblo tribes and a former president of the American Public Health Association, describes the historical relationship between Native Americans and the federal government. He describes a relationship and history that have witnessed a military war being waged against Indian Country; Native Americans being dispossessed of millions of acres of land; and a nearly successful effort to wipe out native people and their traditions, beliefs, and culture.[13] These experiences have had a profound impact. According to Mr. Bird, “when you dispossess people of their land or labor, their culture, their language, their tradition and their religion you set into force powerful forces that impact in a very negative and adverse way.”[12] He explained that this dispossession promotes and creates health disparities for indigenous populations.[12] From his perspective, Native Americans thrived for thousands of years as independent nations prior to a dispossession policy that created the current conditions of despair.[12] Michael Bird believes that this dispossession had led to “significant damage in health, in educational levels, and in social well-being.”[14] A good example of this dispossession policy is the Dawes Act of 1887,[15] which effectively replaced group or tribal ownership of land with individual ownership and made available to white homesteaders land not allotted to individual Native Americans.[16] The assimilation policies of this era sometimes made it illegal to speak traditional languages or practice traditional customs, contributing to the decline in health for many Native Americans.[17] This attempted eradication of native people and their culture was rooted in the belief that they were racially, ethnically, and culturally inferior.”

PGCH_ch08_121-132.indd 125

8/9/18 8:14 AM

126 Part 2: Domains of Competency for Global Health

Table 8-1. Widely Held Values of Alaska Native Communities and Non-Native Researchers Alaska Native Communities

Non-Native Researchers

Sharing

Ownership

Cooperation

Competition

Humility

Achievement

Conflict avoidance

Direct communication

Responsibility to community

Individualism

A second reason that communities may be wary of participating in research is that they may have different values than the researchers. Alaska Native people, for example, who follow traditional ways of living have different value systems from non-Native researchers (Table 8-1). As a result of the different value systems, Alaska Native people often view the conduct of research differently than outside researchers. Alaska Native people may prefer research that is rooted in the community, not implanted in the community. Alaska Native people prefer research that is driven by community needs rather than the researchers’ needs. A third reason that communities may be hesitant to participate in research is that they may have different ways of knowing than the researchers. Alaska Native people, for example, have different knowledge systems, or ways of knowing, than non-Native people. In the Handbook for Culturally Responsive Science Curriculum, Sidney Stephens has depicted traditional Native knowledge and Western science and the common ground between them (Figure 8-2).18 A fourth reason communities may not want to participate in research is that they may have different views about the significance and appropriate uses of samples of their blood or other tissue specimens. In Alaska, for example, extensive human health-related research has been conducted among Alaska Native people since the 1950s. Much of this research was conducted by agencies of the US Public Health Service. It was the policy of the researchers to save and store biological specimens from health research that were not used in the course of a study. Starting in the 1950s, unused samples of tissue from some patients hospitalized at the Alaska Native Medical Center also were saved in an Alaska Area Specimen Bank. As was the custom during that time, this was done without the knowledge or consent of the patients. It was not known whether Alaska Native people wanted their blood or other tissues to be stored in the specimen bank. A similar issue arose among the American Indians of the Havasupai tribe, whose blood samples were collected for a diabetes study and then further used in ways that threatened the tribe’s traditional collective belief that they originated from the Grand Canyon.19 Some indigenous people believe that their blood or tissues have special significance and may not wish to provide it or may restrict its use by researchers. A fifth reason communities may not want to participate in research is the fear of stigmatization from participation in research studies. The risk of stigmatization

PGCH_ch08_121-132.indd 126

8/9/18 8:14 AM

127 Chapter 8: Global Health Research Competencies

Traditional Native Knowledge • Holistic • Includes physical and metaphysical world linked to moral code • Emphasis on practical application of skills and knowledge • Trust for inherited wisdom • Respect for all things • Practical experimentation • Qualitative oral record • Local verification • Communication of metaphor and story connected to life, values, and proper behavior • Integrated and applied to daily living and traditional subsistence practices

Common Ground Organizing Principles • Universe is unified • Body of knowledge stable but subject to modification Habits of mind • Honesty, inquisitiveness • Perseverance • Open-mindedness Skills and Procedures • Empirical observation in natural settings • Pattern recognition • Verification through repetition • Inference and prediction Knowledge • Plant and animal behavior, cycles, habitat needs, interdependence; • Properties of objects and materials; • Position and motion of objects; • Cycles and changes in earth and sky

Western Science • Part to whole • Limited to evidence and explanation within physical world • Emphasis on understanding how • Skepticism • Tools expand scale of direct and indirect observation and measurement • Hypothesis falsification • Global verification • Quantitative written record • Communication of procedures, evidence and theory • Discipline-based • Micro and macro theory (e.g. cell biology and physiology, atomic theory, plate tectonics, etc.) • Mathematical models

Figure 8-2. Traditional Native Knowledge and Western Science and the Common Ground Between Them Reprinted with permission from Stephens S. Handbook for Culturally Responsive Science Curriculum. Fairbanks, AK: Alaska Science Consortium and the Alaska Rural Systemic Initiative; 2003:11.

may be especially important for tribal communities to consider. William Freeman cites several examples of stigmatization of US tribes by research20: “A state health department investigated an outbreak of syphilis in a reservation. After local newspapers publicized it, Tribal children were called derogatory names at school and Indians were prohibited from using rest rooms at some nearby gasoline stations. “Researchers announced the results of a study of alcoholism in an identified western Native community at their news conference held in the eastern United States. The publicity had immediate adverse effects, both in the community and on the community’s credit-worthiness as it tried to raise funds in Wall Street.

PGCH_ch08_121-132.indd 127

8/9/18 8:14 AM

128 Part 2: Domains of Competency for Global Health

“The Navajo Nation asked researchers of the 1993 epidemic of Hantavirus Pulmonary Syndrome (HPS) not to name any Navajo locales in their publications. Two of the first research articles listed the names of Navajo sites where HPS cases or animals infected with hantavirus had been found. Many Navajo people saw this as an invasion of privacy, all the more distressing because they had already experienced both national TV, newspapers, and magazines showing their funerals and public discrimination (e.g., a summer basketball camp for high school athletes at a nearby large university ‘disinvited’ the contingent of Navajo teenage athletes who had already been invited).”20 For these reasons and others, some people in indigenous communities or in certain countries may not embrace the idea of health research as a common good. The Canadian Institutes of Health Research have issued guidelines for health research involving aboriginal people that may be helpful to researchers working in other global health settings.21

Global Goals In 2015 world leaders adopted the Sustainable Development Goals (SDGs).22 These goals followed the Millennium Development Goals, which had been adopted in 2000 and were designed to reduce human inequity by 2015. The primary health-related goal is #3, “Ensure healthy lives and promote well-being for all at all ages” (Box 8-1). Goal 3.2 is to end preventable deaths of newborns and children younger than 5 years, with all countries aiming to reduce neonatal mortality to at least as low as 12 per 1,000 live births and younger-than-5 mortality to at least as low as 25 per 1,000 live births. Each member country of the World Health Organization develops a national approach describing its path to achieve the SDGs. Each child health researcher should learn about the national approach and identify whether the issue of interest to the researcher is included. Too often, it is the other way around: researchers have an idea that they want to pursue, and they ask an individual or organization in the country to collaborate with them, without considering whether it is included in the larger plan. Because human resources are so limited, this effectively reduces the number of the country’s human resources available to participate in research on issues of higher priority to the community or country. Health research activities should be addressed toward the priority health concerns of the community, region, or nation they have the mandate to serve.23 Child health research also should align with other major strategies, such as The Global Strategy for Women’s, Children’s and Adolescents’ Health (2016-2030).24 This updated strategy follows the previous Global Strategy (2010–2015) that galvanized political leadership and attracted billions of dollars in new financial commitments and created Every Woman Every Child, a powerful multi-stakeholder movement for health.24 Another effort of note is the research priorities to improve global newborn health and prevent stillbirths.25

PGCH_ch08_121-132.indd 128

8/9/18 8:14 AM

129 Chapter 8: Global Health Research Competencies

Box 8-1. Sustainable Development Goal for Health (Goal 3) Goal 3. Ensure healthy lives and promote well-being for all at all ages 3.1 By 2030, reduce the global maternal mortality ratio to less than 70 per 100,000 live births 3.2 By 2030, end preventable deaths of newborns and children under 5 years of age, with all countries aiming to reduce neonatal mortality to at least as low as 12 per 1,000 live births and under-5 mortality to at least as low as 25 per 1,000 live births 3.3 By 2030, end the epidemics of AIDS, tuberculosis, malaria and neglected tropical diseases and combat hepatitis, water-borne diseases and other communicable diseases 3.4 By 2030, reduce by one third premature mortality from non-communicable diseases through prevention and treatment and promote mental health and well-being 3.5 Strengthen the prevention and treatment of substance abuse, including narcotic drug abuse and harmful use of alcohol 3.6 By 2020, halve the number of global deaths and injuries from road traffic accidents 3.7 By 2030, ensure universal access to sexual and reproductive health-care services, including for family planning, information and education, and the integration of reproductive health into national strategies and programmes 3.8 Achieve universal health coverage, including financial risk protection, access to quality essential health-care services and access to safe, effective, quality and affordable essential medicines and vaccines for all 3.9 By 2030, substantially reduce the number of deaths and illnesses from hazardous chemicals and air, water and soil pollution and contamination 3.a Strengthen the implementation of the World Health Organization Framework Convention on Tobacco Control in all countries, as appropriate 3.b Support the research and development of vaccines and medicines for the communicable and non-communicable diseases that primarily affect developing countries, provide access to affordable essential medicines and vaccines, in accordance with the Doha Declaration on the TRIPS Agreement and Public Health, which affirms the right of developing countries to use to the full the provisions in the Agreement on Trade-­Related Aspects of Intellectual Property Rights regarding flexibilities to protect public health, and, in particular, provide access to medicines for all 3.c Substantially increase health financing and the recruitment, development, training and retention of the health workforce in developing countries, especially in least developed countries and small island developing States 3.d Strengthen the capacity of all countries, in particular developing countries, for early warning, risk reduction and management of national and global health risks From United Nations. Transforming Our World: The 2030 Agenda for Sustainable Development. New York, NY: United Nations; 2015. https://sustainabledevelopment.un.org/post2015/transformingourworld. Accessed June 20, 2018.

PGCH_ch08_121-132.indd 129

8/9/18 8:14 AM

130 Part 2: Domains of Competency for Global Health

Box 8-2. Principles of Community-based Participatory Research 1.  Origin of the research question (a) Did the impetus for the research come from the defined community? (b) Is an effort to research the issue supported by members of the defined ­community? 2.  Purpose of the research (a) Can the research facilitate learning among community participants about individual and collective resources for self-determination? (b) Can the research facilitate collaboration between community participants and resources external to the community? (c) Is the purpose of the research to empower the community to address social determinants of health? (d) Does the scope of the research encompass some combination of political, social, and economic determinants of health? 3.  Process and context—methodological implications (a) Does the research process apply the knowledge of community participants in the phases of planning, implementation, and evaluation? (b) For community participants, does the process allow for learning about research methods? (c) For researchers, does the process allow for learning about the community health issue? (d) Are community participants involved in analytic issues, interpretation, synthesis, and the verification of conclusions? 4.  Opportunities to address the issue of interest (a) Is the potential of the defined community for individual and collective learning reflected by the research process? (b) Is the potential of the defined community for action reflected by the research process? (c) Does the process reflect a commitment by researchers and community participants to social, individual, or cultural actions consequent to the learning acquired through research? 5.  Nature of the research outcomes (a) Do the community participants benefit from the research outcomes? (b) Is there attention to or an explicit agreement for acknowledging and resolving in a fair and open way any differences between researchers and community participants in the interpretation of the results? (c) Is there attention to or an explicit agreement between researchers and community participants with respect to ownership of the research data? (d) Is there attention to or an explicit agreement between researchers and community participants with respect to the dissemination and application of the research results? From Green LW, George A, Daniel M, et al. Guidelines and Categories for Classifying Participatory Research Projects in Health. http://lgreen.net/guidelines.html. Accessed June 20, 2018.

PGCH_ch08_121-132.indd 130

8/9/18 8:14 AM

131 Chapter 8: Global Health Research Competencies

Research should directly inform program improvement efforts in the community. It should be apparent to research participants that the research results are intended to benefit the participants and the community in which they live. The researcher who explains the full circle of research and how it will come back to benefit the community is more likely to be well received by the community and to make a lasting contribution.

Best Practice Best practices for faculty and students are to follow the principles of community-­ based participatory research, as outlined by the Participatory Research at McGill University26–28 (Box 8-2).

Future Research Needs and Gaps The concerted efforts of international organizations, government ministries, multinational donors, academic centers, nongovernmental organizations, and communities will be necessary to reach the SDGs. The role of community-based participatory research will be integral to success.

References 1. Lukolyo H, Rees CA, Keating EM, et al. Perceptions and expectations of host country preceptors of short-term learners at four clinical sites in sub-Saharan Africa. Acad Pediatr. 2016;16(4):387–393 2. Provenzano AM, Graber LK, Elansary M, Khoshnood K, Rastegar A, Barry M. Short-term global health research projects by US medical students: ethical challenges for partnerships. Am J Trop Med Hyg. 2010;83(2):211–214 3. Etzel R, Kurbasic M, Staton D, et al. Faculty Competencies for Global Health. Reston, VA: Academic Pediatric Association; 2014. https://academicpeds.org/NewsIncludesOct2014/ pdf/11GlobalHealthTaskForceJune2014.pdf. Accessed June 20, 2018 4. Centers for Disease Control and Prevention. Ten great public health achievements—worldwide, 2001-2010. MMWR Morb Mortal Wkly Rep. 2011;60(24):814–818 5. United Nations Inter-agency Group for Child Mortality Estimation. Levels & Trends in Child Mortality: Report 2017, Estimates Developed by the UN Inter-agency Group for Child Mortality Estimation. New York, NY: United Nations Children’s Fund; 2017. https://www.unicef.org/ publications/files/Child_Mortality_Report_2017.pdf. Accessed June 20, 2018 6. Jha A, Kickbusch I, Taylor P, Abbasi K; Sustainable Development Goals Working Group. Accelerating achievement of the Sustainable Development Goals. BMJ. 2016;352:i409 7. Dieleman JL, Graves C, Johnson E, et al. Sources and focus of health development assistance, 19902014. JAMA. 2015;313(23):2359–2368 8. Frenk J, Chen L. Overcoming gaps to advance global health equity: a symposium on new directions for research. Health Res Policy Syst. 2011;9:11 9. Foulks EF. Misalliances in the Barrow Alcohol Study. Am Indian Alsk Native Ment Health Res. 1989;2(3):7–17 10. Trimble JE. Malfeasance and foibles of the research sponsor. Am Indian Alsk Native Ment Health Res. 1989;2(3):58–63 11. Kraus RF. Health and social science research in the Arctic: guidelines and pitfalls. Am Indian Alsk Native Ment Health Res. 1989;2(3):77–81 12. US Commission on Civil Rights, Office of General Counsel. Broken Promises: Evaluating the Native American Health Care System. Washington, DC: US Commission on Civil Rights; 2004:27– 28. http://www.usccr.gov/pubs/nahealth/nabroken.pdf. Accessed June 20, 2018

PGCH_ch08_121-132.indd 131

8/9/18 8:14 AM

132 Part 2: Domains of Competency for Global Health

13. Bird ME. Toward wisdom. In: Bird ME, Bowekaty M, Burhansstipanov L, Cochran PL, Everingham PJ, Suina M, eds. Eliminating Health Disparities: Conversations with American Indians and Alaska Natives. Scotts Valley, CA: ETR Associates; 2002:21–22 14. Bird ME. Health and indigenous people: recommendations for the next generation. Am J Public Health. 2002;92(9):1391–1392 15. Indian General Allotment Act of 1887, Ch 119, 24 Stat 388, 25 USC §331 et seq (2004) 16. Shelton BL. Legal and Historical Roots of Health Care for American Indians and Alaska Natives in the United States. Menlo Park, CA: The Henry J. Kaiser Family Foundation; 2004:7. https:// kaiserfamilyfoundation.files.wordpress.com/2013/01/legal-and-historical-roots-of-health-carefor-american-indians-and-alaska-natives-in-the-united-states.pdf. Accessed June 20, 2018 17. Roubideaux Y. Perspectives on American Indian health. Am J Public Health. 2002;92(9):1401–1403 18. Stephens S. Handbook for Culturally Responsive Science Curriculum. Fairbanks, AK: Alaska Science Consortium and the Alaska Rural Systemic Initiative; 2003:11. http://www.ankn.uaf.edu/ publications/handbook/handbook.pdf. Accessed July 2, 2018 19. Anderson EE, Solomon S, Heitman E, et al. Research ethics education for community-engaged research: a review and research agenda. J Empir Res Hum Res Ethics. 2012;7(2):3–19 20. Freeman W. The role of community in research with stored tissue samples. In: Weir RF, ed. Stored Tissue Samples: Ethical, Legal, and Public Policy Implications. Iowa City, IA: University of Iowa Press; 1998:267–301 21. Canadian Institutes of Health Research. CIHR Guidelines for Health Research Involving Aboriginal People (2007–2010). Ottawa, Canada: Canadian Institutes of Health Research; 2007 22. United Nations. Transforming Our World: The 2030 Agenda for Sustainable Development. New York, NY: United Nations; 2015. https://sustainabledevelopment.un.org/post2015/ transformingourworld. Accessed June 20, 2018 23. Boelen C, Heck JE. Defining and Measuring the Social Accountability of Medical Schools. Geneva, Switzerland: World Health Organization; 1995 24. Every Women Every Child. The Global Strategy for Women’s, Children’s and Adolescents’ Health (2016-2030). Geneva, Switzerland: World Health Organization, Partnership for Maternal, Newborn and Child Health; 2016. http://www.who.int/pmnch/activities/advocacy/ globalstrategy/2016_2030/en. Accessed June 20, 2018 25. Yoshida S, Martines J, Lawn JE, et al. Setting research priorities to improve global newborn health and prevent stillbirths by 2025. J Glob Health. 2016;6(1):010508 26. Green LW, George A, Daniel M, et al. Study of Participatory Research in Health Promotion: Review and Recommendations for the Development of Participatory Research in Health Promotion in Canada. Ottawa, Canada: Royal Society of Canada; 1995 27. Green LW, George A, Daniel M, et al. Guidelines and Categories for Classifying Participatory Research Projects in Health. http://lgreen.net/guidelines.html. Accessed June 20, 2018 28. Institute of Medicine. Exploring Challenges, Progress, and New Models for Engaging the Public in the Clinical Research Enterprise: Clinical Research Roundtable Workshop Summary. Washington, DC: National Academies Press; 2003

PGCH_ch08_121-132.indd 132

8/9/18 8:14 AM

133

CHAPTER 9

Global Health Clinical Competencies Joseph B. Domachowske, MD, FAAP Anna M. Stewart-Ibarra, PhD, MPA Elizabeth T. Domachowske, MPH Elizabeth Asiago-Reddy, MD, MS

abstract The combined use of interprofessional models for research, education, administration, and clinical practice sets a framework for advancing public health. For the clinician, the pursuit of a career in global health often begins with a desire to establish or enhance patient care in countries or communities considered by many measures to be far less economically stable or technologically advanced than one’s own. Improving the treatment for or identifying novel strategies to prevent a specific disease motivates others. The successful development of the clinical aspects of a global health collaboration depends on adhering to the basic core principles of public health. Faculty practicing in settings outside of their home country need to develop, refine, and practice many of the skills acquired during training and through clinical practice experience but in the new context of understanding the unique aspects of clinical work in a new culture, usually with fewer or different resources than those to which they are accustomed. Competencies for global health faculty are grouped and discussed under 4 categories or domains: values and ethics, roles and responsibilities, communication, and team building and teamwork. Beyond these specific categories, additional special considerations merit discussion.

PGCH_ch09_133-156.indd 133

8/16/18 11:24 AM

134 Part 2: Domains of Competency for Global Health

Teaching Points 1 Clinical practice competencies for faculty in global health are included in the 2014 report from the Academic Pediatric Association Global Health Task Force.

2 Clinicians working in global health should demonstrate competence in the

domains of values and ethics, roles and responsibilities, communication, and team building and teamwork.

3 Open bidirectional dialogue that includes spoken and nonverbal cues is an

essential competency for global health clinicians, especially when participating in the clinical care of individuals from different cultures.

4 Faculty competency in anticipating unexpected circumstances and coping

with high stress levels and frustrations that result from unrealistic expectations related to the delivery of health care in resource-challenged communities is an important skill for global health clinicians to recognize and to develop.

Clinical Training in Global Health International volunteer health experiences appeal to trainees and faculty alike. Learning about and practicing clinical medicine among communities that are vastly different from one’s usual experience can be exceptionally rewarding and highly educational for those who embrace it. Clinical practice differs based on geography, available resources, and cultural practices, with the spectrum and severity of acute and chronic illnesses reflecting many of those differences. In efforts to move beyond (but not replace) the usual informal framework for volunteer international clinical activities, most medical training programs now offer global health electives.1 As formal global health training activities became more widely available, the importance of standardizing that training by identifying specific areas for proficiency became evident. The Accreditation Council for Graduate Medical Education and the American Board of Medical Specialties first introduced general competency domains for medical trainees in 1999.2 While these competency domains did not specifically identify areas of focus for global health trainees, the general framework certainly applied. Since that time, efforts to expand, refine, and update competency-based recommendations and requirements have evolved for medical students and trainees in pediatrics3 and other areas of primary care and specialty medicine.4–6 The development of general faculty-based competencies emerged in parallel,7 and many of the early general concepts were used to begin discussions on competencies deemed important for the area of global health. By 2011, competency domains and specific competencies under the umbrella of each domain were first recommended for those training in global child health.8 In 2010, with the recognition that more academic pediatricians were engaging in global health efforts and developing interests in teaching international health principles, the

PGCH_ch09_133-156.indd 134

8/16/18 11:24 AM

135 Chapter 9: Global Health Clinical Competencies

Box 9-1. Competency Domains, Academic Pediatric Association Global Health Task Force, 2014 1. Values/Ethics 2. Roles/Responsibilities 3. Communication 4.  Team Building and Teamwork 5.  Special Considerations

Academic Pediatric Association (APA) Global Health Task Force was formed under the leadership of Danielle L ­ araque-Arena, MD, FAAP (2010–2012), bringing together a diverse international group of educators and researchers representing the collaborative efforts of more than 50 practitioners, researchers, and experts in the field.9 Ruth A. Etzel, MD, PhD, FAAP, chaired the task force from 2012 to 2014 and led the effort to develop competencies to provide guidance to research and educational efforts globally, leading to the development and publication of the global health competencies. For the purposes of its effort, the task force described competency according to the definition of the Association of Schools and Programs of Public Health: “…a unique set of applied knowledge skills and other attributes grounded in theory and evidence for the broad practice of public health.”10–13 Eight months later, the American Academy of Pediatrics endorsed the publication.14 The work identifies 5 competency domains for faculty working in the area of global health (Box 9-1). For each of these domains, specific universal competencies are first outlined that pertain to all faculty involved in global health initiatives. Competencies specific to those working in the areas of research, education, administration, and clinical practice are then listed separately and represent additional competencies needed to work in those arenas. Many faculty face duties and interests in 2 or more of these areas, highlighting the importance of integrating competencies across their scope of activity.15 Faculty in global health have a duty to their collaborators and trainees to appreciate areas in which their own proficiencies require further development, and while the implementation of global health competencies originated in high-income countries, the responsibility should be shared among all stakeholders.16

Competency Domain 1: Values and Ethics The first competency domain, values and ethics, involves 10 universal and 2 clinical practice–specific competencies (Box 9-2). The universal competencies focus on recognizing the importance of the bidirectional relationship and open communication with the host community with goals and priorities of the program identified through needs assessments. This approach is important to clinicians because without a needs assessment to identify areas that the host community has already prioritized for collaboration, visiting clinicians may overlook issues that local leaders have already deemed important. Clinical areas of particular interest or

PGCH_ch09_133-156.indd 135

8/16/18 11:24 AM

136 Part 2: Domains of Competency for Global Health

Box 9-2. Universal and Clinical Practice Competencies in the Values and Ethics Domain, Academic Pediatric Association Global Task Force, 2014a 1.1 Seek invitations to work with the host population/organization. 1.2 Establish transparent relationships with host country partners. 1.3 Align goals and objectives with host priorities. 1.4 Establish bidirectional relationships that mutually benefit all participants. 1.5 Recognize that public health and infrastructure priorities may be highly valued priorities that may need to supplant some goals or objectives of the visiting faculty. 1.6 Engage a local partner to help define priority needs of the local population. 1.7 Identify the key social determinants of health in the host country. 1.8 Appreciate a variety of health care delivery models including governmental, ­faith-based and traditional approaches. 1.9 Recognize the role of the traditional health care providers. 1.10 Appreciate the differing cultural and ethical contexts for research, education, administration, and clinical practice, and engage in honest discussion about ­principles that differ between groups, and articulate where compromise is or is not possible. C1.1 Acknowledge treatment guidelines and restrictions for country and/or facility. C1.2 Provide clinical care that is patient centered and respectful of patient’s privacy especially with regard to photography and sharing of patient information for teaching purposes.  niversal competencies are listed numerically (1.1–1.10); clinical practice competencies are listed with a U preceding C (C1.1–C1.2). Adapted with permission from Etzel R, Kurbasic M, Staton D, et al. Faculty Competencies for Global Health. Reston, VA: Academic Pediatric Association; 2014. https://academicpeds.org/NewsIncludesOct2014/pdf/ 11GlobalHealthTaskForceJune2014.pdf. Accessed June 20, 2018. a

importance to the incoming global health group may not be a priority for the community. Discussions with host leadership and other community members are necessary to identify community priorities, and even when goals for improving specific clinical outcomes are agreed on by all stakeholders, the path to achieving those goals may be seen quite differently by host and visitor. Needs assessments to identify clinical areas that would benefit most from the collaboration will often start through traditional provider-provider interactions between the hosts and visitors, but engaging local community leaders, health care promoters, government officials, and faith-based leaders can be critical to overcoming unexpected obstacles or avoiding miscommunication. Specific clinical practice competencies included in the values and ethics domain maintain that faculty “acknowledge treatment guidelines and restrictions for country and/or facility” and “provide clinical care that is patient centered.”

PGCH_ch09_133-156.indd 136

8/16/18 11:24 AM

137 Chapter 9: Global Health Clinical Competencies

Availability of resources and/or cultural differences can affect local or regional treatment guidelines. Approaches to the treatment of common illnesses may vary considerably when compared with the usual practice of the visiting faculty when they are working in their home communities.17 Unlike most visiting clinical faculty, experienced local health care professionals often already know how to approach an illness that is common or unique to their geographic region, while the problem is seldom or never previously encountered by those visiting. The emergence of new, unexpected health care problems may be vexing for all members of the team, especially where resource allocation is already strained (Figure 9-1). Appropriate acknowledgement of treatment guidelines and diagnostic tools, along with restrictions to their availability, is important, although the local team may prioritize some of these areas for change as the collaboration develops. In such circumstances, a bidirectional approach is preferred.18 Information and cultural norms related to the manner in which health care information is shared for educational purposes should be explored. Global health teams traditionally include trainees at various levels of education. The common, accepted, and expected practice whereby teaching faculty share clinical details with trainees without reservation may not be a practice shared by the host community. The local approach to sharing patient information for educational purposes should be explored so that patient privacy is respected in the customary manner of the culture and community.

A

Figure 9-1A. In July 2016, Dr Anna Stewart surveys the waterfront damage to the once bustling town of Bahia de Caraquez, Ecuador, after a major earthquake devastated the community 3 months earlier. Courtesy of Joseph B. Domachowske, MD, FAAP.

PGCH_ch09_133-156.indd 137

8/16/18 11:24 AM

138 Part 2: Domains of Competency for Global Health

B

Figure 9-1B. Dr Joe Domachowske (left) and student Dr Ryan Nightingale (center) discuss strategies to assist residents of the area who continued to experience severe anxiety and depression related to the disaster. Resources to assist in the management of such widespread posttraumatic stress were scarce. Courtesy of Joseph B. Domachowske, MD, FAAP.

Case Example A global health clinical team from the United States makes twice-annual medical mission trips to the same small rural, resource-challenged area of Central America. There is no regular access to health care for the families in the community, but a government-appointed local health promoter visits monthly. The health promoter has little formal health care training but has gained experience by serving this and surrounding communities for several years. During his visits, he provides education and counseling on basic health issues, administers vaccines, and offers contraception at no cost to the families. During a recent medical mission trip, an 18-year-old woman was brought to the clinic because she was experiencing severe abdominal pain. On physical examination, she was very pale, tachycardic, and diaphoretic. The health promoter explained that she develops this problem monthly during her menses. Two months earlier, the family collected sufficient funds to have her evaluated at a regional hospital, where they were told she has ovarian endometriosis. During

PGCH_ch09_133-156.indd 138

8/16/18 11:24 AM

139 Chapter 9: Global Health Clinical Competencies

that consultation, the gynecologist recommended depot medroxyprogesterone treatments, which would be provided by the government and administered by the local health promoter at no cost to the family. The family declined. When the visiting clinician and local health promoter offered medroxyprogesterone treatment for relief of her current symptoms, she refused the treatment. The health promoter explained to the visiting clinician that he had been forbidden to administer the medication by the girl’s father the previous month because their religion does not allow the use of contraception. The family was informed by the visiting clinician and by the local health promoter that the medication would most certainly help, and without it, the adolescent should be brought to the hospital for other treatment options, as her condition was becoming unstable. The patient’s father explained that he would not allow her to return to the hospital because one of the treatment options offered was to surgically remove the ovary and that could render her infertile. The visiting clinician again expressed concerns that the adolescent’s condition was becoming life-threatening. The health promoter suggested meeting separately with the patient’s father. When offered, the father agreed, on the condition that his religious leader also be present. During the brief meeting, most of the discussion was between the father and his priest. It became clear that the father wanted to allow the hormone treatment to relieve his daughter’s suffering but considered any decision to use an intervention that could impair her fertility an act against his faith. His priest was able to explain that the treatment was allowed by faith for the purpose it was being given, and together they provided consent to administer the medication. The values and ethics illustrated by this case could be encountered anywhere one is practicing medicine. The ability of the team to recognize the role of the health promoter as the traditional health care provider and to follow his counsel to speak with the patient’s father privately was instrumental in ultimately resolving the dilemma. Cultural practices dictated that neither the mother nor the patient herself could question or override the decision of the father. Recognition, respect, and understanding that the father’s decision was driven by faith led to engagement of the family priest, ultimately leading the father to consent to treatment. In this case, patient-centered care was maintained through combined teamwork in which the visiting faculty member conveyed the importance of the medical treatment to the patient, her parents, the health promoter, and the priest. The health promoter identified the primary reason for the father’s initial refusal to accept the recommended treatment, and the priest, understanding the father’s conflict, had the necessary influence, leading to a change in his decision.

Competency Domain 2: Roles and Responsibilities The competencies included in the second domain, roles and responsibilities, relate to the faculty’s recognition of his or her role as a visitor with an obligation to learn about and respect the cultural norms of the community with which he or she is collaborating. From a clinician’s perspective, it is particularly important to be cognizant of resource limitations that affect decision making related to patient care. The 5 universal and 2 clinical practice–specific competencies listed under

PGCH_ch09_133-156.indd 139

8/16/18 11:24 AM

140 Part 2: Domains of Competency for Global Health

Box 9-3. Universal and Clinical Practice Competencies in the Roles and Responsibilities Domain, Academic Pediatric Association Global Task Force, 2014a 2.1 Respect, value and work within the host cultural context with mutually defined expectations and roles. 2.2 Recognize one’s role and work respectfully as visiting faculty at host institutions. 2.3 Demonstrate cultural respect and sensitivity. 2.4 Recognize one’s own limitations, and strive to appreciate the challenges faced by colleagues working with very limited resources and how that affects their decision making process. 2.5 Seek opportunities for continuous learning and self-assessment. C2.1 Appreciate the structure and function of the local and national health care systems. C2.2 Adapt clinical practice to resource limitations within the host country. a Universal competencies are listed numerically (2.1–2.5); clinical practice competencies are listed with a preceding C (C2.1–C2.2). Adapted with permission from Etzel R, Kurbasic M, Staton D, et al. Faculty Competencies for Global Health. Reston, VA: Academic Pediatric Association; 2014. https://academicpeds.org/NewsIncludesOct2014/pdf/ 11GlobalHealthTaskForceJune2014.pdf. Accessed June 20, 2018.

this domain outline the proficiencies expected of global health personnel (Box 9-3). This competency domain also highlights the importance of faculty developing skills in seeking new learning opportunities and being mindful of the importance of self-assessment.19 As new collaborations are just developing, these efforts may entail fairly simple matters such as learning about the basics of disease epidemiology in the region or acquiring some native language skills. As the relationship matures, more sophisticated factors will likely demand attention, such as developing an understanding of the health care infrastructure for the region and appreciating how the duties of local practitioners influence their interactions with the local, regional, and national health care system. Specific clinical practice competencies included in this domain maintain that faculty “appreciate the structure and function of the local and national health care systems” and “adapt clinical practice to resource limitations within the host country.” In the earliest phases of interaction, faculty new to the practice of global health may find these competencies seemingly out of reach. Experience gained through clinical practice opportunities done in collaboration with the host community health care team will allow a rapid and robust understanding of that community’s approach to health care delivery. Once the structure and function of the local health care system becomes clear, important (and sometimes different) aspects of regional and national health care can be explored. This immersive approach to expanding the depth of one’s understanding in the area of health care system issues is reminiscent of the process that occurs during medical school and residency training, where experience drives the accumulation of knowledge from local to regional and national health care delivery approaches. The obvious major difference is the compressed time frame in which this is best accomplished when

PGCH_ch09_133-156.indd 140

8/16/18 11:24 AM

141 Chapter 9: Global Health Clinical Competencies

a global health collaboration is developing. Without a sound understanding of the structure and function of the host community’s health care delivery system, it is unrealistic for a visiting clinician to determine whether or how his or her usual clinical practice should be adapted to accommodate local practices and available resources. Gaining experience by working alongside local practitioners serves as an important conduit to understanding differences or limitations associated with clinical care, particularly as the partnership is developing. The role and responsibility of the clinical faculty member during this aspect of the collaboration is primarily as the learner. Open discussions about the manner with which some clinical approaches contrast with the visiting faculty’s “home” circumstances may uncover areas that the host clinicians would like to identify for change but should not be broached in a confrontational or judgmental manner.

Case Example A US-based clinician on an extended assignment working at a pediatric HIV clinic in Tanzania recognized that local guidelines for HIV care were consistent with the recommendations of the World Health Organization (WHO). To account for limitations in the procurement of antiretroviral medications, the WHO recommendations restricted antiretroviral therapy to HIV-infected children in Tanzania who had clear clinical or laboratory test results indicative of more advanced disease. The US-based recommendation at the same time recommended that all children with HIV infection be started on therapy, irrespective of clinical or laboratory findings. In Tanzania, medication supplies were limited, and local practitioners adhered strictly to the WHO/Tanzanian guidelines to ensure that medications were available for the children with more advanced disease. The visiting physician evaluated a 5-year-old boy with HIV infection during routine clinic hours. At the time, the boy was not taking antiretroviral medication. The boy’s primary caregiver was worried that the boy was not growing as well as his cousins who were not infected with HIV, and the boy had developed 2 separate respiratory tract infections requiring outpatient antibiotic treatment during the past year. Based on these concerns, the boy’s caregiver asked whether it might be time to start treating his HIV infection. On physical examination, the boy appeared healthy and was appropriately interactive and not distressed. His height was in the 20th percentile for his age, and his weight-for-height z score was within 1 SD of the mean. He was noted to have mild eczema, but the remainder of his physical examination was normal. His laboratory studies indicated an absolute CD4 lymphocyte count of 682 cells/mm3 with a CD4 percentage of 8%. The visiting clinician staged his HIV infection as WHO clinical stage 2, which did not meet criteria for antiretroviral therapy according to local practice guidelines. The clinician noted the child would have been eligible for antiretroviral therapy before his fifth birthday a few months earlier because age-specific laboratory criteria (CD4 percentages) for scoring purposes change at age 5 years based on age-specific typical ranges. Recognizing that the boy’s caregiver was also concerned and willing to administer the treatment, the visiting clinician prescribed the medications, arranged for the family to obtain them at the

PGCH_ch09_133-156.indd 141

8/16/18 11:24 AM

142 Part 2: Domains of Competency for Global Health

pharmacy, and made the required referral to the adherence team for education. While documenting the clinical encounter, the visiting clinician found no place for comment on the standardized national HIV care form located in the front of the chart, so the clinician documented the rationale for initiating antiretroviral treatment in the progress note. Several months later, the visiting clinician met with the boy and his caregiver when they returned to the clinic for a follow-up evaluation. The caregiver was obviously distressed, explaining to the visiting clinician that the medications were stopped after 1 month when a local practitioner saw the boy during a routine clinic visit. At that time, it was noted that the boy did not meet WHO criteria for the initiation of antiretroviral therapy, and although he had been doing well on treatment, he did not qualify based on local guidelines. The visiting clinician recognized that she had made a significant error. While her decision to start antiretroviral therapy for the child had been done with the best of intentions, the clinician had disregarded local guidelines and had not conferred with her in-country clinical counterparts when considering this exception. In the process, she had placed the child at risk for developing resistance to medications, which occurs with unsustained exposure to them, and potential worsening of illness due to reemergent viremia when the medications were discontinued. The visiting clinician also appreciated that her actions had eroded the family’s trust in her and in the health care system. To reduce the negative effect of her actions, the visiting clinician enlisted assistance from the clinic’s nurse administrator and a local physician colleague. She apologized to the family and acknowledged her error in starting medications when the boy did not clearly qualify. The caregiver remained upset but understood the importance of following the local guidelines and agreed to ongoing care. Several months later, the boy was hospitalized for pneumonia. The severity of his lower respiratory infection changed his HIV clinical score to WHO clinical stage 3, which now met the local criteria for treatment with antiretroviral medication. He thrived on antiretroviral therapy and was followed by the clinic personnel through his adolescence. This case illustrates a major challenge with the practice of clinical medicine outside of one’s usual practice. The implementation of interventions considered “simple” or “standard of care” where culture and resources allow may become complex and outside of the standard due to uncontrollable circumstances and resource deficiencies. The nature of the physician is the desire to help others. Workarounds, such as using personal or visiting program funds to procure medications or supplies that are not otherwise available, or making exceptions to local guidelines to help an individual, seem intuitive. However, consideration of the potential consequences of such actions must be carefully weighed. In unfamiliar cultures, some of the potential consequences may not be apparent to the visiting team. The visiting clinician has a duty to respect and follow local treatment guidelines and, where conflicts such as those illustrated in this case arise, to work with local clinicians and health care infrastructure to influence system-wide improvements that can influence local guidelines when feasible.

PGCH_ch09_133-156.indd 142

8/16/18 11:24 AM

143 Chapter 9: Global Health Clinical Competencies

Competency Domain 3: Communication The third competency domain, communication, includes 6 universal and 3 clinical practice–specific competencies (Box 9-4) with a focus on establishing open, trusting, bidirectional opportunities through active listening; creating tangible work product such as reports and policies; and facilitating the dissemination of information learned locally, nationally, and internationally. As with each of the other competency domains, a theme of bidirectionality is evident. Active listening can be impeded by language and cultural differences. For example, some cultures may value direct spoken communication, while others may rely more heavily on indirect communication or nonverbal communication to express opinions or decisions. Those who are accustomed to a more direct communication approach may misinterpret an indirect response as evasive or opposing. Those accustomed to an indirect communication style may perceive direct communication as offensive or confrontational. Even those clinicians with exceptional active listening skills in their own culture when using their own language may find themselves faced with regular challenges in a completely new environment. Those locals who are fluent in English may use words or phrases that have completely different meanings in the host country than in the country of origin of the physician. It is important to assess a completely unexpected response to verify what has been

Box 9-4. Universal and Clinical Practice Competencies in the Communication Domain, Academic Pediatric Association Global Task Force, 2014a 3.1 Establish bidirectional opportunities, mentorship, teaching and learning. 3.2 Engage in active listening. 3.3 Make efforts to integrate smoothly into the local system. 3.4 Create locally valuable output (reports, policies, research papers, curricula, ­educational materials, reference materials). 3.5 Establish mutual trust among participants by fostering openness and acceptance. 3.6 Facilitate local, national and international discussion/presentation of outcomes. C3.1 Engage host health workers and interpreters to ensure accuracy of clinically ­relevant information. C3.2 Establish and enhance relationships and collaborations between local clinicians and clinicians in faculty’s own country who could provide expertise in various areas of global health. C3.3 Emphasize role of the host institution partners in the development of clinical programs. a Universal competencies are listed numerically (3.1–3.6); clinical practice competencies are listed with a preceding C (C3.1–C3.3). Adapted with permission from Etzel R, Kurbasic M, Staton D, et al. Faculty Competencies for Global Health. Reston, VA: Academic Pediatric Association; 2014. https://academicpeds.org/NewsIncludesOct2014/pdf/ 11GlobalHealthTaskForceJune2014.pdf. Accessed June 20, 2018.

PGCH_ch09_133-156.indd 143

8/16/18 11:24 AM

144 Part 2: Domains of Competency for Global Health

heard. Indirect responses may require a series of follow-up, open-ended questions to ensure that a matter is truly addressed. Clinicians may also find themselves communicating through interpreters, during which nuances of the discussion can be lost.18 Clinicians might perceive themselves as inefficient communicators in such settings, but an expectation that discussions will require time and patience can temper that impression. Accurate communication is far more important than efficient communication. In time, both can be achieved. Specific clinical practice competencies included under the communication domain maintain that faculty “engage host health workers and interpreters to ensure accuracy of clinically relevant information,” “establish and enhance relationships and collaborations between local clinicians and clinicians in faculty’s own country who could provide expertise in various areas of global health,” and “emphasize role of the host institution partners in the development of clinical programs.” For some domestic partnerships, and for many international partnerships, language, both spoken and nonverbal, can represent a barrier to the communication of complete and accurate clinical information. This needs to be understood and addressed in a comprehensive manner to ensure the quality of clinical care when mutual decisions are made to alter care or when clinical decisions are being made by the visiting clinician. Competent bilingual medical translators are essential when the visitor does not speak the native language, but their presence should not discourage faculty clinicians from learning some of the new language. Total bidirectional communication is the goal, where spoken and nonverbal cues are understood fluently by both parties in the dialogue. Time and experience can help with understanding nonverbal communication signals that are different from one’s own culture. Spoken and receptive language fluency comes with years of immersion. Engaging practitioners with skills and expertise beyond those of the established group, both locally and from the faculty’s home country, can expand the breadth of local programs when deemed a priority by the host clinicians. Engaging outside experts, by necessity, adds to the complexities of written (nothing verbal, no visual cues) and telephone (spoken, but no visual cues) communication whether or not the external expert is native to the host country or culture. Even if the outside physicians are fluent in the local language, a misinterpretation of a local phrase may cause great confusion and misunderstanding, all the more so since the visiting physician understands the basic language. Faculty fluent in the native language should be reminded of the importance of assessing the local meanings of terms if unanticipated confusion or communication breakdowns occur. If clinical program expansion or development is identified as an objective for the partnership, it is essential that the host clinician(s) maintain a key role in prioritizing the goals for the chosen areas of expansion. In some circumstances, such as novel programs where there is little or no local experience, the global health team should model or facilitate the early steps. Regional experts can also be engaged, particularly if early needs assessments suggest that other regions of the host country might prioritize development of similar efforts should the pilot program prove successful.

PGCH_ch09_133-156.indd 144

8/16/18 11:24 AM

145 Chapter 9: Global Health Clinical Competencies

Case Example Shortly after their arrival to a long-standing collaborative health care site in Latin America, a US-based team of clinicians met with community leaders to review the goals and objectives for the current visit. Quite unexpectedly, they were informed that nearly all the school-aged children near the site had been ill for the last several months. The most common complaints were coughing; difficulty breathing; wheezing; sore throat; itchy, watery eyes; and fatigue. The observations of the leadership were confirmed later that day during clinic hours. Nearly all the younger children who were seen were coughing or wheezing, and all of them complained of sore throat. The visiting clinicians had seen children in this community more than a dozen times over a 3-year period and had not encountered this problem previously. The medical team was unprepared to treat a large number of children for reactive airway disease or allergies. That evening, the visiting clinicians again met with the local community leadership to discuss the newly recognized problem. Following the discussion, the grade school teacher, who was absent from the morning meeting because of her duties, asked to address the group. She began by stating that one of the community leaders, who was not in attendance, had started a business several months earlier to make and sell charcoal. The business was so successful that he had already suggested that other members of the leadership join his endeavor. The charcoal production site was directly across the street from the elementary school. The teacher suggested that the group make the 3-km walk to the school to see the site. About halfway to the site, the visiting clinicians first noted the smell of smoldering ashes. As the smoky odor intensified, particulate matter became evident in the still air. When the source of the thick pollution came into view, the reason for the newly identified health problem was immediately evident. Directly across the street from the elementary school was an enormous mound of smoldering firewood. The teacher explained that underneath the mound, where the smoldering logs were under higher pressure and heat, charcoal was formed. It was collected on a regular basis and sold to families in other communities. The teacher said that breezy days were worse because the direction of the wind almost always blew the smoke into the school building. She had asked the owner of the charcoal production site to consider moving it months ago, as she noticed it was making the students sick. The owner denied her request and instead had started to build a second charcoal mound a few hundred meters away. After some additional discussion, the group decided to meet with the owner to explain the reasons why the charcoal mound needed to be moved or eliminated. The visiting clinicians explained the consequences of the heavy smoke exposure on the health of the children and other members of the community. The owner stated that he was aware that the business had some unpleasant aspects, but it was on his own property, and he was unwilling to forfeit the income that he had grown accustomed to. A creative solution evolved during a separate series of discussions with the local leaders on ways to improve the nutrition of the community members.

PGCH_ch09_133-156.indd 145

8/16/18 11:24 AM

146 Part 2: Domains of Competency for Global Health

A

B

Figure 9-2. In a rural community referred to as Rancho Grande in the San Vincente region of El Salvador (A), a charcoal mound was positioned directly across the street from the elementary school (B). The smoldering heap brought new air pollution to the community and, because of its location near the school, led to previously unseen respiratory problems, particularly among the school-aged children. Collaborative efforts with community leadership and the schoolteacher led to a creative solution, and the “volcano of contamination” was removed. Courtesy of Joseph B. Domachowske, MD, FAAP.

Several projects were developed, with a focus on improving dietary protein in a diet that consisted primarily of corn and sugar. A volunteer youth group would build chicken coops for donated chickens and begin working on developing ponds that could be used to farm tilapia. The chicken, eggs, and fish would provide much of the needed protein in a sustainable manner. The owner of the

PGCH_ch09_133-156.indd 146

8/16/18 11:24 AM

147 Chapter 9: Global Health Clinical Competencies

charcoal mound recognized the potential for one or both of these projects to develop into small businesses and agreed to remove his charcoal mound if the volunteer group would include him in its planning. Each year, the team returns to the area to find chickens in the coops and well-stocked tilapia ponds, demonstrating the sustainability of a simple intervention. The charcoal mound was removed as promised (Figure 9-2). This case highlights several competency areas, including the importance of direct, indirect, and nonverbal communication skills. There were several opportunities to identify and communicate the problem and the proposed solution(s). Cultural differences between the visiting and local team presented obstacles to solving the problem but were eventually overcome once the visiting team recognized that the charcoal mound had intrinsic financial value to its owner and were able to present alternatives means of income. Other community members may have tolerated the local air pollution because they understood its importance to the owner’s livelihood. In this situation, it was the local schoolteacher, working with the visiting clinical team, who was able to convey the important primary message to the community members to initiate a widespread interest in eradicating the problem for the health of the community.

Competency Domain 4: Team Building and Teamwork The fourth competency domain described by the APA Global Health Task Force is team building and teamwork. The competencies reviewed under the values and ethics, roles and responsibilities, and communication domains already integrate the concept of teams and teamwork because, by definition, global health partnerships require the formation of a team. The teams themselves may be of any size and may include members from a broad array and highly diverse group of health, education, government, and other related disciplines. Global health partnership teams are also fluid in size and membership, depending on the types of work being considered or performed. The heterogeneity of the team, composed of members from the host and visiting cultures, may result in unanticipated challenges. Faculty competency in the skills listed under the domains of values and ethics, roles and responsibilities, and communication will not necessarily prevent such challenges from emerging but will allow challenges to be identified and addressed early so the focus can return promptly to the priority projects. The domain of team building and teamwork lists 9 universal and 3 clinical practice–specific competencies (Box 9-5). The universal competencies encourage the fostering of local leadership and collaborators while offering expertise in program monitoring and evaluation. This domain also includes competencies for supporting interprofessional collaborations and advocating for in-country partnerships that extend beyond local and regional communities. These competencies tie in nicely with those listed in the communications domain. Specific clinical practice competencies included in this domain maintain that faculty “practice clinically in a manner that encourages a multidisciplinary team approach to patient care, respecting local protocols and operations”; “engage team members in a manner that recognizes, utilizes and strengthens locally available resources to

PGCH_ch09_133-156.indd 147

8/16/18 11:24 AM

148 Part 2: Domains of Competency for Global Health

Box 9-5. Universal and Clinical Practice Competencies in the Team Building and Teamwork Domain, Academic Pediatric Association Global Task Force, 2014a 4.1 Collaborate in prioritization of goals and objectives. 4.2 Engage a local partnership to help define priority needs of the local population. 4.3 Foster local leadership. 4.4 Empower local collaborators. 4.5 Develop and support local inter-professional collaborations. 4.6 Help identify local resources (e.g., financial and political support, potential partners from other disciplines, physical infrastructure). 4.7 Offer expertise in program monitoring and evaluation. 4.8 Advocate for child and maternal health in partnership with local and national colleagues. 4.9 Develop explicit, equitable power sharing agreements. C4.1 Practice clinically in a manner that encourages a multidisciplinary team approach to patient care, respecting local protocols and operations. C4.2 Engage team members in a manner that recognizes, utilizes and strengthens locally available resources to achieve best practice without dependence on ­higher technology. C4.3 Develop clinical programs, in conjunction with host partners. a Universal competencies are listed numerically (4.1–4.9); clinical practice competencies are listed with a preceding C (C4.1–C4.3). Adapted with permission from Etzel R, Kurbasic M, Staton D, et al. Faculty Competencies for Global Health. Reston, VA: Academic Pediatric Association; 2014. https://academicpeds.org/NewsIncludesOct2014/pdf/ 11GlobalHealthTaskForceJune2014.pdf. Accessed June 20, 2018.

achieve best practice without dependence on higher technology”; and “develop clinical programs, in conjunction with host partners.” While understanding that local context is important to avoid inadvertently undermining local clinicians by suggesting technologies and treatments that are not readily available, it is equally important and a respectful stance to partner with local professionals to drive progress and the improved health outcomes for the populations served. Perhaps, as well, an unbiased approach that values the intellectual capital of the full team may draw on local clinical expertise and avoid mistakes of the past (eg, overuse of antibiotics). In circumstances where resources are scarce, a multidisciplinary approach may be difficult to encourage because of a real or perceived increase in cost. Visiting faculty quickly recognize the importance of relationships with local clinicians as they consider options for alternatives to their usual clinical approaches when they are not locally available. Experienced local clinicians are best equipped to delineate the breadth of options that are available and affordable. In remote rural communities, it is important to identify local leaders or health promoters (sometimes with little or no formal training) who have taken on the responsibility of

PGCH_ch09_133-156.indd 148

8/16/18 11:24 AM

149 Chapter 9: Global Health Clinical Competencies

A

B

Figure 9-3. A, Flooding along the South American coast in 2016 led to abundant freestanding water, which families collected in buckets for their daily needs. Left uncovered, these vessels also served as breeding nurseries for mosquitoes, including Aedes aegypti, the mosquito vector for dengue, chikungunya, and Zika viruses. B, David Madden, RN, and Elizabeth Domachowske, MPH, work with a member of the local community to educate on effective ways to keep the mosquito population down close to his home. A preexisting strong collaboration with the Ministry of Health facilitated shared leadership to reach as many families as possible in efforts to curtail outbreaks of mosquito-borne infections. Courtesy of Joseph B. Domachowske, MD, FAAP.

leading the efforts for community health in the absence of physicians (Figure 9-3). What is their team like? Do they access higher levels of health care when necessary? Where and how do they do so? In areas where local clinical care is established, the visiting faculty usually becomes familiar with available diagnostic and therapeutic resources that are available to the local clinicians by working alongside them. When the team

PGCH_ch09_133-156.indd 149

8/16/18 11:24 AM

150 Part 2: Domains of Competency for Global Health

identifies a priority for upgrades in technology, including those for diagnostic purposes and therapeutic intervention, discussions on the feasibility of introducing, maintaining, and financing the upgrade should involve all local stakeholders. Faculty competence extends beyond the introduction and education related to the implementation of new technology to ensure that local trained personnel are available to troubleshoot problems when the technology falters. A team approach is also imperative when developing or enhancing clinical programs. Mutual efforts are essential when new clinical programs are being considered so that local and regional in-country priorities are addressed. Working together, the global health and local clinicians and their teams can first determine whether any new clinical programs should be developed. Once decided, teamwork is required to evaluate the feasibility of implementing the desired program. Once defined, written policies or guidelines can be drafted, communicated to all team members for suggestions on changes, and then modified and recirculated. Policies, guidelines, or standard operating procedures should include the specific roles and responsibilities for each of the different team members. Outcome data measurement should be included systematically as a program evaluation tool that is developed by the host and visiting clinical teams.19 Once the initial round of program evaluation is complete, the teams should review the outcomes and decide together whether any modifications are necessary. New or enhanced clinical programs that are found to be successful can then be considered for introduction to other regions of the country if a similar need has been identified. In-county teams that develop clinical programs in collaboration with visiting faculty may gain sufficient experience to mentor other in-country teams in replicating their program in another region. As programs grow in success, global health faculty are also meant to be competent in determining whether and how such programs can be sustained. This is best accomplished through team efforts and careful strategic planning.

Case Example A US investigator was working with her team of local clinical researchers on a long-term surveillance project in South America, when a 7.8 magnitude earthquake struck with an epicenter several hundred kilometers north of the research site. The team was not affected directly, so they decided to immediately mobilize efforts to aid the affected region by providing clinical care and needed medications. The team recognized the need to work within existing governmental structures to avoid chaos immediately post-disaster. They contacted the local municipal government, which was sending a convoy of local technicians, physicians, and donations to the region, to determine how best to assist, and they were invited to join the group. Immediate acceptance and trust from the municipal government was due to a long-standing collaboration created through years of open communication and sharing of information from research in the region. The government team conveyed the importance of traveling with the convoy because

PGCH_ch09_133-156.indd 150

8/16/18 11:24 AM

151 Chapter 9: Global Health Clinical Competencies

of civil unrest in the affected disaster area. Tens of thousands of people were in urgent need of basic assistance including food, water, and health care. These physical needs were intensified by the psychological trauma associated with a major earthquake and aftershocks, including loss of life, home, property, and income. For safety reasons during this highly unstable period, local police forces relocated the relief team to a community where basic security was available yet had significant immediate clinical needs, as identified by ministry of health clinicians. The team maintained contact with the National Secretary of Risk, to ensure that its actions were aligned with other health care professionals’ actions in the region and to provide important observations and insights from the field about the local situation. This challenging setting required significant leadership, coordination, and clear communication across a network of Ecuadorian stakeholders in a rapidly evolving emergency context. Once the team arrived at the site where they would intervene, they began collaborating with clinicians from the local Ministry of Health, integrating with field teams to conduct household visits in affected communities, gathering important data on the condition of the population and damages, providing primary health care, and reassuring the population that medical services were available in their communities. The team met with local clinicians to gather a list of their needs in terms of medicine and basic equipment, as many items had been damaged or destroyed in the earthquake. Local partners identified the need for medical attention in more remote neighborhoods located further from the city center. As a result, the team reached out to a local school run by a nongovernmental organization (NGO) to establish a temporary primary care clinic in partnership with the Ministry of Health. This NGO proved to be a strong partner, due to its long-standing positive relationship with, and prior experience in providing healthcare to, the community. Through this collaboration, the team was able to partner with local physicians to reach more than 100 patients per day at the clinic, many of whom required basic wound care, access to medication, and management of chronic illnesses (Figure 9-4). This case example illustrates the power of effective teamwork and highlights the ongoing need for collaborative efforts to maintain a level of involvement appropriate to evolving or emergent needs while maintaining vigilance to do so with input and guidance from appropriate local, regional, or national groups. Nine months after the earthquake, clinical teams associated with and recruited by the original research group continued to travel to the affected areas of Ecuador to volunteer in relief clinics while the public health infrastructure is rebuilt and until regional government-operated health care clinics are once again available to most of the affected communities. It is estimated that such needs will continue for at least 1 year. The involved teams continue to work with the Ecuadorian Ministry of Public Health so the efforts can be maintained, including offering medical student and resident trainee opportunities to work and learn alongside global health faculty and other volunteer physicians.

PGCH_ch09_133-156.indd 151

8/16/18 11:24 AM

152 Part 2: Domains of Competency for Global Health

A

Figure 9-4A. Student Dr Dan Farrell was aware of the post-earthquake health care needs several hundred miles north of where he was working on his dengue research project in Machala, Ecuador. He was eager to travel north with clinical faculty to assist several communities while the government worked to restore its rural clinics. On this particular day, the morning was spent in a community disproportionately affected by HIV where he and registered nurse Louise Erdman (center, rear) interviewed families outdoors in front of a makeshift shelter provided by the nongovernmental organization, Samaritan’s Purse. Courtesy of Joseph B. Domachowske, MD, FAAP.

Competency Domain 5: Special Considerations The final faculty competency domain listed by the APA Global Health Task Force is special considerations. Four universal competencies are included (Box 9-6). As this domain addresses issues relevant to global heath faculty in areas of research, education, administration, and clinical practice, no stand-alone clinical practice competencies are listed. The universal competencies highlight the likelihood that unexpected difficulties and frustrations will present themselves during the course of the partnership. Even with meticulous attention to details, values, ethics, roles, responsibilities, teamwork, and perceived success in all areas of communication, those choosing a career in global health should expect the unexpected. Obstacles cannot always be predicted. Obvious solutions do not always solve problems. Total bidirectional communication can fail. Faculty in global health should be competent in anticipating such difficulties and understand that such circumstances are not always avoidable. In cases in which unexpected conflict emerges, teamwork and open communication remain essential competencies.

PGCH_ch09_133-156.indd 152

8/16/18 11:24 AM

153 Chapter 9: Global Health Clinical Competencies

B

Figure 9-4B. Later the same day, in another community only a few miles away, Dan speaks with a mother about her daughter’s acute illness, using a local school building as a temporary clinic. Courtesy of Joseph B. Domachowske, MD, FAAP. Box 9-6. Universal and Clinical Practice Competencies in the Special Considerations Domain, Academic Pediatric Association Global Task Force, 2014a 5.1 Anticipate difficulties that may be encountered—including ethical dilemmas, time constraints, burden of work, and concerns for personal well-being. 5.2 Anticipate unexpected circumstances and cope with high stress levels and ­frustrations that result from unrealistic expectations. 5.3 Develop skills in conflict anticipation, awareness and resolution. 5.4 Recognize the ongoing process of adjustment when working with a new culture. Universal competencies are listed numerically (5.1–5.4). Adapted with permission from Etzel R, Kurbasic M, Staton D, et al. Faculty Competencies for Global Health. Reston, VA: Academic Pediatric Association; 2014. https://academicpeds.org/NewsIncludesOct2014/pdf/ 11GlobalHealthTaskForceJune2014.pdf. Accessed June 20, 2018. a

Collaborative problem-solving, engaging or reengaging all stakeholders, is necessary to build or change consensus. Global health faculty should, therefore, have existing skills in conflict anticipation and resolution. A difficult experience may encourage further development of that skill set in an attempt to improve subsequent outcomes. Clinical practice frustrations may emerge day-to-day if a clinician wavers in being competent in truly understanding local practices or

PGCH_ch09_133-156.indd 153

8/16/18 11:24 AM

154 Part 2: Domains of Competency for Global Health

limitations in resources. Clinicians who are working in very resource-restricted communities will likely face situations where locally, “nothing more can be done,” long before they would be comfortable with this conclusion at their home institution. Perhaps these are the kinds of situations in which competency to cope with high stress levels that can come with unrealistic expectations will serve them best. A critically important principle of global health partnership is that of ­inclusion—the act of making someone or something a part of something larger. Doing so requires respect of the cultural behaviors and practice, respect for individual roles within the public health framework, and, perhaps most importantly, respect for each individual. During the development or evolution of clinical programs and in the day-to-day practice of clinical medicine, global health clinicians have the opportunity and obligation to regularly circle back to the principle of inclusion to ensure that its integrity remains intact. The performance of quality measurements and 360° evaluations will aid in determining program effectiveness and are invaluable in guiding future direction.

Case Example A pediatric resident doing a global health elective in Africa evaluated a 4-year-old with headaches and clumsiness. The patient’s physical examination showed mild papilledema and obvious neurologic abnormalities, including ataxia. After discussing the case with her faculty preceptor, she informed the family that the child needed a neuroimaging study because a brain tumor was suspected. The family thanked the resident and the faculty member but explained that they could not afford a computed tomography scan or treatment for a brain tumor, so they would take their child home, simply asking for pain medication to treat the headaches. The physicians agreed, and the family left. The following day, the resident posted her experience on social media and sent group e-mails to her friends and colleagues requesting donations to help her patient. The global health faculty preceptor in Africa did not know that the resident was attempting to raise funds until the preceptor was contacted directly by another member of the department who had received the e-mail request. Subsequent discussions with the resident revealed that she had stopped the family before they left the clinic and promised she would try to raise money for their child’s medical evaluation and treatment, despite the discussions they had only a few minutes earlier with the faculty member present. The situation presented several unexpected challenges to the faculty member on-site. First, he needed to meet with the family to review what had happened and why the plan was unrealistic. Second, he needed to meet with the resident to discuss her actions and why they were counterproductive to the global health work they were trying to develop in West Africa. Third, he needed to address the questions and, in some cases, monetary donations coming from people who had received the resident’s request for assistance. The time and effort required to contain the problem removed his attention from some of the clinical work that was planned over the next 2 weeks. The action of the resident was most unexpected because of the training, orienta-

PGCH_ch09_133-156.indd 154

8/16/18 11:24 AM

155 Chapter 9: Global Health Clinical Competencies

tion, and precepting to which she had been exposed, but the emotional circumstances and high stress level of the encounter led her to act in a way that she thought was helpful at the time. The unexpected action and the series of necessary interventions to limit negative consequences were learning points for the resident and faculty member alike.

Conclusion Clinical work in the global health arena can be exceptionally rewarding and remarkably challenging. Working toward proficiency in each of the described areas of competence can help reduce those challenges. The goal of achieving excellence in all these areas should be pursed on a continuum through reflection, continuing education and collaboration with others in the field both domestically and abroad, and with the insight that the definition of excellence changes with time and experience.

References 1. Torjesen K, Mandalakas A, Kahn R, Duncan B. International child health electives for pediatric residents. Arch Pediatr Adolesc Med. 1999;153(12):1297–1302 2. Epstein RM, Hundert EM. Defining and assessing professional competence. JAMA. 2002;287(2):226–235 3. Nelson BD, Lee AC, Newby PK, Chamberlin MR, Huang CC. Global health training in pediatric residency programs. Pediatrics. 2008;122(1):28–33 4. Houpt ER, Pearson RD, Hall TL. Three domains of competency in global health education: recommendations for all medical students. Acad Med. 2007;82(3):222–225 5. Frenk J, Chen L, Bhutta ZA, et al. Health professionals for a new century: transforming education to strengthen health systems in an interdependent world. Lancet. 2010;376(9756):1923–1958 6. Frenk J. Reinventing primary health care: the need for systems integration. Lancet. 2009;374(9684):170–173 7. Milner RJ, Gusic ME, Thorndyke LE. Perspective: toward a competency framework for faculty. Acad Med. 2011;86(10):1204–1210 8. Howard CR, Gladding SP, Kiguli S, Andrews JS, John CC. Development of a competency-based curriculum in global child health. Acad Med. 2011;86(4):521–528 9. APA Global Health Task Force call. Final minutes. http://www.academicpeds.org/leadership/ GlobalTaskForce/minutes2_4_11.pdf. Published February 4, 2011. Accessed June 20, 2018 10. Drain PK, Holmes KK, Skeff KM, Hall TL, Gardner P. Global health training and international clinical rotations during residency: current status, needs, and opportunities. Acad Med. 2009;84(3):320–325 11. Crisp N. Turning the World Upside Down: The Search for Global Health in the 21st Century. London, United Kingdom: Royal Society of Medicine Press Ltd; 2010 12. Albanese MA, Mejicano G, Mullan P, Kokotailo P, Gruppen L. Defining characteristics of educational competencies. Med Educ. 2008;42(3):248–255 13. Etzel R, Kurbasic M, Staton D, et al. Faculty Competencies for Global Health. Reston, VA: Academic Pediatric Association; 2014. https://academicpeds.org/NewsIncludesOct2014/ pdf/11GlobalHealthTaskForceJune2014.pdf. Accessed June 20, 2018 14. American Academy of Pediatrics. Faculty competencies for global health. Pediatrics. 2015;135(6):e1535 15. Sklar DP. Integrating competencies. Acad Med. 2013;88(8):1049–1051 16. Garcia PJ, Curioso WH, Lazo-Escalante M, Gilman RH, Gotuzzo E. Global health training is not only a developed-country duty. J Public Health Policy. 2009;30(2):250–252

PGCH_ch09_133-156.indd 155

8/16/18 11:24 AM

156 Part 2: Domains of Competency for Global Health

17. Whitehead M, Dahlgren G, Evans T. Equity and health sector reforms: can low-income countries escape the medical poverty trap? Lancet. 2001;358(9284):833–836 18. Levinson W, Lesser CS, Epstein RM. Developing physician communication skills for patientcentered care. Health Aff (Millwood). 2010;29(7):1310–1318 19. Holmboe ES, Sherbino J, Long DM, Swing SR, Frank JR. The role of assessment in competencybased medical education. Med Teach. 2010;32(8):676–682

PGCH_ch09_133-156.indd 156

8/16/18 11:24 AM

PART

3 Educational Models in Global Health Settings

PGCH_ch10_157-168.indd 157

8/20/18 8:01 AM

PGCH_ch10_157-168.indd 158

8/20/18 8:01 AM

159

CHAPTER 10

Purposeful and Mindful Leadership: An Educational Framework for Global Child Health Stephen Ludwig, MD, FAAP David G. Nichols, MD, MBA, FAAP

abstract Purposeful and mindful leadership for global health incorporates the same principles as any leadership endeavor. Purposeful leadership requires a core dedication to the organizational mission. There cannot be purposeful leadership without authenticity of purpose—a true desire to lead for a reason, not just leadership for the sake of leadership. Mindful leadership requires attention to the many nuances found in a particular setting, culture, and system of care or organizational structure. In global leadership, mindfulness is critical to securing success. All leadership requires the blend of the drive of purpose seasoned with the humility of mindfulness. In the United States, medical education has been shaped by the confluences of accreditation and certification. Accreditation refers to the standardization of training programs. Certification refers to the demonstrated competence of individuals to practice their profession. It is a system of checks and balances that does not exist in many other global settings but one that might serve as an effective framework for others. Central to any leadership position is the ability to promote change. In the context of global health leadership in education, change is not the replication of the US system but the preservation and adaptation of the concepts of programmatic and individual improvement efforts.

PGCH_ch10_157-168.indd 159

8/20/18 8:01 AM

160 Part 3: Educational Models in Global Health Settings

OPERATING PRINCIPLES INCLUDED (SEE PART 1.) 1. Polarization (identification of obstacles to sustainability) 2. Partnership (respectful, bidirectional modalities) Competencies Addressed: E1, E3 See Chapter 7, Global Health Education Faculty Competencies.

Key Reference Satcher D, Higginbotham EJ. The public health approach to eliminating disparities in health. Am J Public Health. 2008;98(9 Suppl):S8–S11

Teaching Points 1 Leadership styles vary based on the leader’s personality, the circumstances of leadership, and the needs of those being led.

2 Effective leaders have passion and vision, lead from the heart, possess high emotional intelligence, and demonstrate self-discipline.

3 Effective global leaders must be mindful of the local culture, the specific

health needs of the community, the available resources, and the feasibility of an intervention.

4 Every leadership endeavor must have an agreed-on broad goal and specific objectives by which to measure success or opportunities for improvement.

5 Accreditation refers to the standardization of training programs, while certification refers to the demonstrated competence of individuals to practice their profession.

6 Leaders can manage and overcome barriers by explicitly welcoming feedback

from all stakeholders and collectively reviewing the predetermined metrics of success.

History/Context: What Is Leadership? Leadership is the ability to motivate people for change. Change may come in the form of new knowledge, new ways of acting or behaving, or new attitudes and beliefs. Change may occur by many means. History is replete with leaders who made change through decree and force, while others did so through inspiration and motivation. Leadership is realized through a complex set of human skills and interactions that can be learned and improved. It is a craft that develops over time and experiences. Purposeful leadership requires individuals to consciously strive to improve their craft relative to a specific purpose.

PGCH_ch10_157-168.indd 160

8/20/18 8:01 AM

161 Chapter 10: Purposeful and Mindful Leadership: An Educational Framework for Global Child Health

Societies’ interests in understanding the concept and practice of leadership is not confined to modern times. The following description of leadership was written in the sixth century bce in the Tao Te Ching1: Of the best ruler The people only know they exist The next best they love and praise The next they fear And the next they revile But of the very best when their task is accomplished the people remark, “We have done it ourselves”

Core Elements of Leadership Leadership is present—and essential—in all functional societies, be it through politics, sports, corporate work, organizations large and small, etc. Certain core elements of leadership are crosscutting. These are the common elements of good leaders as described by Bill George in his book Authentic Leadership and summarized in the following paragraphs2:

Understanding Purpose Of all the core elements of leadership, perhaps the most important is understanding one’s purpose. Some might describe this as “passion.” It is a deep belief in the reason that one is devoting oneself to a purpose or goal through leadership. Friedman describes this as “total leadership”3 and states that the practice of leadership begins with being real, clarifying what is important, and acting with authenticity. Being authentic allows the leader to articulate a vision and the reason to make change to achieve that vision. Understanding purpose requires insight into understanding one’s own motivations. Every good leader must answer the question, “Why do I want to lead?”

Practicing Solid Values

Leaders rise or fall based on their values and the expression of their value systems. Paramount among values is honesty and integrity. Integrity builds trust in the leader and is essential to the success of the group or organization’s goals.

Leading With Heart George describes this element as the ability of the leader to care about those she or he is leading.2 People want to work in a caring and humanistic environment. This feeling of being cared for as an individual extends to the organization caring for something bigger—a vision. A great leader must project caring for people and caring for a greater good or mission.

PGCH_ch10_157-168.indd 161

8/20/18 8:01 AM

162 Part 3: Educational Models in Global Health Settings

Establishing Connected Relationships No leader can accomplish a group or organization’s goals alone. Hence, the leader must have the ability to form and maintain relationships. To accomplish this core element, the leader must have mature emotional intelligence.4 This form of intelligence is distinct from knowledge intelligence. It consists of having self-knowledge, empathy, and social skills. A leader who can establish connected relationships knows how people feel and what makes them “tick.” Some indi­ viduals have these skills inherently, while others must consciously develop them.

Demonstrating Self-discipline A leader must demonstrate the ability to keep focus on the vision and employ the skills needed to reach that vision. Leadership is not about the leader’s ego, success, or acclaim. Rather, it is the leader’s steadfastness to the vision that counts.

Leadership Styles Leadership styles vary based on the leader’s personality, the circumstances of leadership, and the needs of those being led. Many leadership paradigms have been proposed, and generally, there is significant overlap between the models. We have selected one of these models, the leadership compass, to guide our thinking about leadership styles. Four basic styles have been described in the leadership compass.5 These are not pure forms, and some leaders mix these styles and may consciously vary their style depending on circumstances required for effective leadership. ▶▶ North: Active, decisive, controlled, up-front leadership, courageous, not stopped by “no.” ▶▶ South: Values-driven, feelings-based, “right and fair”–driven. The leader uses relationships to accomplish tasks and trusts in intuition. ▶▶ East: Visionary, sees big picture, insight into mission and purpose, explorer, spiritual, sees all options and possibilities. ▶▶ West: Practical and dependable, uses data and logic, careful, follows procedures, objective and process-driven. There are advantages and disadvantages to each leadership modality. The leader who is primarily an idealistic dreamer may not have the ability to provide specific direction to accomplish a goal. The leader who is very goal directed might not be inclusive enough to bring the entire group along the path to reaching the goal. A good leader can become a better leader by learning how to deploy actions external to his or her natural quiver when appropriate.

Current Best Practices: Leadership Applied to Global Health Leadership in the context of global health endeavors requires additional skills. Leadership in a stable, homogeneous environment requires complex skills, but leadership in an environment in which there are differences in culture, language, traditions, and history (eg, colonialism) requires even more. In addition

PGCH_ch10_157-168.indd 162

8/20/18 8:01 AM

163 Chapter 10: Purposeful and Mindful Leadership: An Educational Framework for Global Child Health

to the core tenants of leadership described previously, there is the need to be purposeful in one’s leadership: in considering global health leadership, the inclusion of mindfulness adds additional necessary complexity. There are several aspects of mindfulness that need to be addressed. ▶▶ What is the culture? The purposeful global leader is mindful of the role of culture in system change. Culture is the canvas on which a new outcome will be created. Without seeking to understand the culture of the setting in which a leader finds himself or herself, successful leadership will be difficult to achieve. The skilled global health leader has made the effort to learn about the history, mores, customs, traditions, and institutions of the global health partner. Even after attaining such knowledge, the modern global health leader has consciously reflected on and become aware of his or her own cultural or cognitive inherent biases. ▶▶ What is the need? Leadership is promoting change, but change must be defined by the health need. A leader must make a mindful assessment of the need. To be successful, both partners must have their needs met. ▶▶ What are the resources? Mindfulness also extends to an understanding of the existing and required resources to complete a project. Limitations to needed resources may be financial, personnel, or equipment and materials related. Global health partners need to agree on what resources exist and which are needed. ▶▶ What is realistic? Leaders may have great vision and great passion, but there also needs to be mindfulness about what is realistic and achievable and, at the same time, likely to move the broad vision forward. A global health leader may need to achieve a smaller tangible goal to gain credibility rather than be seen as a failure for not achieving a greater, more ambitious goal. Determining that balance can define leadership. To quote a notable courageous leader, Mary Claire King, PhD: “No question is too big to ask.” But Dr King also counterbalances this with, “The most righteous projects demand the most rigorous science.” This approach to rigor is analogous to any endeavor that one pursues. A mindful leader is cognizant of the rigor and integrity with which to approach a project.6 The challenges in global health leadership are similar to the leadership challenges in other areas of medicine. For instance, deans and department chairs must balance conflicting priorities, manage scarce resources, and communicate with different constituencies. Similarly, global health leaders must evince effective and culturally sensitive communication, marshal available resources within a health care system, and determine when to lead outright or integrate into a team of other health care professionals. These leadership competencies may be called on in a range of settings and contexts. For example, a leader may be trying to negotiate optimal care for a child who is in need inside a low-income country, a child who has fled as a refugee and his or her parents are not present to consent, or a child who was born into a community facing disproportionate disease burden in a high-income country.7 Many institutions of learning have developed

PGCH_ch10_157-168.indd 163

8/20/18 8:01 AM

164 Part 3: Educational Models in Global Health Settings

programs to support such skill sets for targeted outcomes. For example, the Satcher Health Leadership Institute at the Morehouse School of Medicine (http://satcherinstitute.org) has taken on the mission of reducing and eliminating health disparities by developing leaders with the previously described competencies. Given the prevalence of health disparities in high-income countries and persistently elevated childhood mortality rates in low-income countries, one hopes that every pediatric training program will empower its trainees with such a skill set. ▶▶ How will success be measured? A mindful leader must also determine with the global health partner how success will be measured and who will measure it.

Program Evaluation Effective leaders will not be guided solely by their opinion of success but by measurement of specific objectives. Thus, the leader should be well versed in program evaluation methods.8 Every leadership endeavor must have an agreed-on broad goal and specific objectives by which to measure success or opportunities for improvement. Some of the steps necessary to evaluate programs or activities include ▶▶ Define stakeholders, including the identification of whose evaluation matters. ▶▶ Determine what is meaningful. ▶▶ Consider various paradigms and approaches. ▶▶ Select the outcome, then the measurement method, then the instrument, and then the way the instrument will be applied. ▶▶ Consider the reliability and validity of the measurement scores. ▶▶ Pilot test the evaluation process. ▶▶ Secure a large enough and representative sample. ▶▶ Identify an appropriately nonconflicted but competent individual to conduct the evaluation. ▶▶ Predetermine when measures for the review will be obtained or drafted and who will do so.

Environmental Scan: Lessons From the US Medical Education System In the United States, medical education has been shaped by the confluences of accreditation and certification. Accreditation refers to the standardization of training programs. Certification refers to the demonstrated competence of individuals to practice their profession. These dual processes assure the public that physicians are trained and qualified to provide the services they purport to provide. A physician who has graduated from an accredited training program and has passed a certification established by peers provides a level of social accountability that is reasonable, appropriate, and required. It is a system of checks and balances that does not exist in many other global settings but one that might serve as an effective framework for others. Some countries have adopted the Accreditation Council for Graduate Medical Education International standards for accrediting their training

PGCH_ch10_157-168.indd 164

8/20/18 8:01 AM

165 Chapter 10: Purposeful and Mindful Leadership: An Educational Framework for Global Child Health

programs.9 Other education systems have used the American Board of Pediatrics in-training examinations as measures of individual trainee achievement.10 The export of the US system may not be possible or desirable for use around the world. Also, the Liaison Committee on Medical Education is the accrediting body for medical schools and colleges, although more rigorous evaluation of the correlation between its standards and health outcomes is needed as part of the social accountability contract. However, imbedded in the US system are 2 sets of competencies that may be achievable and useful. One is the application of the principle of systems-based practice; the other the principle of ­practiced-based learning. A “system” is a collection of interdependent components that is designed to collectively achieve a common objective. Systems-based practice requires the physician to understand and participate in the health care system effectively, with the goals of better and more cost-effective care ultimately leading to improved outcomes for patients and populations. The competency in p ­ ractice-based learning encourages health care professionals to examine their care relative to the best evidence-based practices, identify gaps in care, and then constantly work to improve the care and eliminate the gaps. These competencies are ones that leaders can stress as they urge an understanding of the system of care in which one practices. They can be applied anywhere, even in the absence of advanced technology. Understanding the strengths and weaknesses of the system allows one to lead toward effective change. This realistic and diligent approach to leadership can be matched by aspirational goals that, again, achieve what may be perceived initially to be unachievable.

Barriers to Effective Leadership There are barriers to effective leadership, and being aware of these barriers is important lest one recognize a barrier in the course of implementing change. ▶▶ Losing touch with the core activity or mission ▶▶ Fear of change ▶▶ Fear of failure ▶▶ Authoritarianism ▶▶ Wanting to be liked or popular ▶▶ Wanting to be revered or distanced ▶▶ Following instead of leading ▶▶ Failure to listen ▶▶ Micromanagement that suppresses creativity and autonomy ▶▶ Lack of humility Leaders can manage and overcome these barriers by explicitly welcoming feedback from all stakeholders and collectively reviewing the predetermined metrics of success. The manner in which meaningful feedback can be elicited will vary by culture and by the stature of the individual serving as the manager. A true leader will involve those persons with such knowledge and social standing within the targeted community to enable an effective review to be conducted.

PGCH_ch10_157-168.indd 165

8/20/18 8:01 AM

166 Part 3: Educational Models in Global Health Settings

Cautions There are 2 further cautions to be considered when accepting a leadership role. The first is to be clear in the difference between managing and leading. A characteristic of leadership is the ability to influence minds and hearts. A second attribute is having awareness of those who are anti-leaders. Most great leaders understand management is a role different from leadership.11 Managing involves planning and budgeting, organization and staffing, and controlling and problem-solving. Good leaders may be good managers, but many good managers may not be effective leaders. Leadership involves setting a direction, aligning people, and motivating them. Anti-leaders are individuals with strong leadership skills. They have the ability to get people behind them and to motivate others. They differ from leaders in that their primary driver is not the mission but their own ego gratification. These are often narcissistic individuals, the naysayers who have the ability to subvert the group from reaching its goals.

Conclusions and Summary There are common elements that define the success or failure of leadership, and these core elements can be applied to varying leadership styles. Style is based on the characteristics of an individual leader and the situational needs of a leadership role. Behind all leadership efforts there must be an authentic commitment to the mission and a need for purposeful action. In global health endeavors there is a need for mindfulness and a mind-set of partnership to be successful. While knowledge of the local culture and environment is important for all leaders, it is especially so for global health leaders—for all the reasons discussed earlier. All leadership efforts may face barriers; being mindful of the common barriers will help to avoid them and to be successful in achieving the goals of the leader and the organization or group the leader is serving.

References 1. Heider J. The Tao of Leadership: Lao Tzu's Tao Te Ching Adapted for a New Age. Atlanta, GA: Humanics New Age; 1985 2. George B. Authentic Leadership: Rediscovering the Secrets to Creating Lasting Value. San Francisco, CA: Jossey-Bass; 2003 3. Friedman SD. Total Leadership: Be a Better Leader, Have a Richer Life. Boston, MA: Harvard Business Review Press; 2014 4. Goleman D. Emotional Intelligence: Why It Can Matter More Than IQ. New York, NY: Bantam Books; 1995 5. The leadership compass self-assessment. Be the Change Consulting Web site. http://www. bethechangeconsulting.com/sites/default/files/worksheets/Leadership-compass-self-assessment. pdf. Published 2010. Accessed June 22, 2018 6. Owens KN, Harvey-Blankenship M, King MC. Genomic sequencing in the service of human rights. Int J Epidemiol. 2002;31(1):53–58 7. Cheng TL, Moon R, Horn I, Jenkins R; DC-Baltimore Research Center on Child Health Disparities. Introduction: state-of-the-art on child health disparities. Pediatrics. 2015;136(4): 730–731

PGCH_ch10_157-168.indd 166

8/20/18 8:01 AM

167 Chapter 10: Purposeful and Mindful Leadership: An Educational Framework for Global Child Health

8. Kirkpatrick DL, Kirkpatrick JD. Evaluating Training Programs: The Four Levels. 3rd ed. San Francisco, CA: Berrett-Koehler Publishers Inc; 2006 9. Accreditation Council for Graduate Medical Education International. ACGME-I Mission. http://www.acgme-i.org/about-us/mission. Accessed June 22, 2018 10. American Board of Pediatrics. American Board of Pediatric News. http://www.abp.org/news/ nichols-blog-global-health. Accessed March 19, 2018 11. Kotter JP. A Force for Change: How Leadership Differs From Management. New York, NY: The Free Press; 1990

PGCH_ch10_157-168.indd 167

8/20/18 8:01 AM

PGCH_ch10_157-168.indd 168

8/20/18 8:01 AM

169

CHAPTER 11

A New Advocacy Paradigm for Education: The Role of Persistence Bronwen J. Anders, MD, FAAP

abstract Persistence may be defined as the quality that allows someone to continue doing something or trying to do something even though it is difficult or opposed by other people, or firm or obstinate continuation of advocacy despite difficulty.1 The first definition implies a long-term commitment to a program. It also implies seeing a project through and seeking opportunities to connect others when the time is right. The term “stickiness factor” from Malcom Gladwell’s book, The Tipping Point: How Little Things Can Make a Big Difference, has been brought into the global health discussion by Danielle Laraque-Arena, MD, FAAP, in her presidential speech at the 50th anniversary of the Academic Pediatric Association.2,3 The stickiness factor describes a desire to see programs through to sustainability with a more positive, fanciful lightness, not dogged determination like a bulldozer. As children and youth are given the tools to take ownership of their future with persistence and confidence, there may be no turning back. The fierce determination of community health professionals to ensure adequate, reliable, culturally appropriate, and sustainable programs and policies has come, in part, in the United States from the growth of support for such programs from the American Academy of Pediatrics (AAP). This chapter will briefly follow through the evolving trends and many key concepts as they helped to frame and guide the work of pediatricians and other health care professionals working with communities in the United States and overseas. Several key concepts that helped to support this effort were taken up by the AAP, including the Convention on the Rights of the Child, childfriendly places, concepts of equity and social justice, the Community Access to Child Health program, asset-based community development, the Anne E. Dyson Child Advocacy Award, and the Community Pediatrics Training Initiative, along with the requirement that residents have experiences and opportunities outside the hospital to work with community-based organizations and to learn principals of public health

PGCH_ch11_169-182.indd 169

8/20/18 8:02 AM

170 Part 3: Educational Models in Global Health Settings

and service learning. The need for persistence will be shown throughout. All these concepts translate easily to overseas work, as we will show with 4 examples. The shared vision of seeking educational successes for all children who can grow up with knowledge of their own languages and stories is taking root across all borders. We are seeing in various countries the importance of spending time with a parent, teacher, or mentor starting at birth surrounded with love and words. The emphasis on the home language spoken freely around the newborn may perhaps mitigate a world fraught with violence, prejudice, and addiction, both in the family and community and in the world at large.

OPERATING PRINCIPLES INCLUDED (SEE PART 1.) 1. Persistence (genuine advocacy) 2. Partnership (respectful, bidirectional modalities) Competencies Addressed: E1, E2, E3, E4 See Chapter 7, Global Health Education Faculty Competencies.

Key References Knitzer J. Advocacy and the children’s crisis. Am J Orthopsychiatry. 1971;41(5):799–806 Flood D, Rohloff P. Indigenous languages and global health. Lancet Glob Health. 2018;6(2):e134–e135

Teaching Points 1 Children have fundamental rights that should be recognized by all countries. 2 Persistence is a core tenet of advocacy. 3 Global models of advocacy include the Community Access to Child Health (CATCH) and International CATCH programs.

4 Partnership with communities and social justice are at the heart of all ­advocacy.

History/Context From the Perspective of the United States This chapter will elaborate on the last 25 years, in which most of these concepts have been formalized by the American Academy of Pediatrics (AAP) and made available to practicing pediatricians through the AAP at the chapter, district, national, and global level.

PGCH_ch11_169-182.indd 170

8/20/18 8:02 AM

171 Chapter 11: A New Advocacy Paradigm for Education: The Role of Persistence

The UN Convention on the Rights of the Child Nothing could better represent the concept of persistence in advocacy than the story of the ratification of the Convention on the Rights of the Child (CRC) in the United States. The basic orientation toward defining a framework for the rights of the child was signed by the United States in 1990 and was quickly adopted by countries around the world. However, the United States is now the only UN member that has not ratified it. Drs Jeff Goldhagen and Tony Waterson organized the first equity conference in the United Kingdom. Together, they worked on training modules for teaching the CRC to raise awareness of its important tenets. Governments of countries that have ratified the CRC are required to report to, and appear before, the UN Committee on the Rights of the Child periodically to be examined on their progress with regard to the advancement of the implementation of the CRC and the status of child rights in their country. The frustration of child advocates in the United States who have been unable to move the resolution to passage in Congress is long term.4–7 Grassroots pediatric advocates brought it to the AAP Annual Leadership Forum in 2014 and it was voted as 1 of the top 10 resolutions passed by participants.8 Pediatricians, together with multidisciplinary child health advocates, decided that with the Obama presidency and a majority of his party in the US Senate, the timing was right to bring it to ratification again. But political processes take time, and the two-thirds majority Senate approval required by the US Constitution for presidential treaty ratification disappeared. Those working with medical students, residents, and fellows in underserved clinics saw again and again the disbelief that this document could be ratified and understood in every other country in the world, except ours. They once again had to move with community partners to begin to define ways to implement the concepts of child-friendly places from the grassroots level upward to the community level.9 Similarly, regarding the right of all children to health care, we could wait for our government to pass legislation making affordable health care accessible to all (single-payer option), or we could work at the grassroots level of communities to pull together and design programs that work to define the needs of all children and make health care accessible and affordable. When the time is right, community members come together and momentum builds for change. We saw this as the Community Access to Child Health (CATCH) program expanded. The CATCH mission statement supports efforts to make certain that every child has access to a quality medical home or other needed services: “CATCH supports pediatricians to collaborate within their communities to advance the health of all children.”10 Some of us were lucky to come along at the right time to be able to stay in our communities near a teaching center and to make available to students and residents continuity clinics outside the hospital teaching settings in multicultural, low-income places. One could learn the public health aspects of the usual morbidity and mortality rates of children, and then interpret locally by assessing those families who came to seek health in the clinic setting. One could model how to reach out to schools, recreation centers, hospitals, and public health centers to find out who was not accessing health care and why.

PGCH_ch11_169-182.indd 171

8/20/18 8:02 AM

172 Part 3: Educational Models in Global Health Settings

Students and residents (learners) came to a town outside of San Diego, CA, and helped to offer free health supervision visits (well-child checkups). While listening to patients and recording standard questions explaining lack of access to health care, they found out directly why patients did not access care. Out of these free clinics, with medicine supplied by the local stadium association, following standards of care as defined by the Child Health and Disability Prevention program (Early and Periodic Screening, Diagnostic, and Treatment, nationally), the pediatric caregivers were able to raise a substantial amount of money toward a future clinic in a way they knew best. Five of the students and residents went through the Institutional Review Board process at the University of California at San Diego (UCSD) and were able to present the data at an annual research conference. The concepts, which were developed in community pediatrics by the AAP and disseminated via the AAP policy statement “Community Pediatrics: Navigating the Intersection of Medicine, Public Health, and Social Determinants of Children’s Health,” have become crucial to supporting models that work for patient health in their families, communities, and schools.11 Out of the concepts of equity, social justice, and the importance of the CRC emerged a better understanding of the multiple determinants of health and essential components of a health care system. These concepts could be shared while mentoring students and residents in a community clinic setting, first ensuring follow-up within the community on discharge from the hospital settings, and subsequently learning the strength of community-based organizations (CBOs) for follow-up. It became a positive experience for US residents in the community to learn from their patients how the lack of social capital led directly to poor health. Humility, likewise, becomes key with the recognition of the role of medical doctors as only one player in these complex paradigms. The “Windshield Survey or Community Snapshot” (see Appendix C) project became a standard method for pediatric residents to understand their community resources in continuity clinics. The project consists of riding “through the neighborhood,” recording community assets, and developing “a list of what community members see every day.”12 Advocacy is thought to be first political and legislative, but most clinicians first learn it in their initial clinical encounters to ensure the best care for a patient and family and in lobbying for the patient from their hospital bases to make connections that will help for adequate follow-up.13 As advocacy training and experience became a required portion of residency training, clinicians become ready to provide practical places to offer the programs.

Asset-Based Community Development For learners of pediatric health, asset-based community development remains a useful concept for identifying the assets in communities, not just needs (the discouraging message of which might keep multicultural families away). John McKnight, the author of the asset-based community development concepts, worked with early CATCH facilitators at the AAP to make a handbook just for pediatricians to learn how to identify community leaders and unrecognized

PGCH_ch11_169-182.indd 172

8/20/18 8:02 AM

173 Chapter 11: A New Advocacy Paradigm for Education: The Role of Persistence

groups and clubs (like the highway sign program), as well as the big institutions: schools, public health, and parks.14 The basic idea was if one just looked at the needs, one might be discouraged about getting in to areas like Watts, Los Angeles, CA, or historically diversity averse areas of East San Diego, CA. Perhaps one of the hardest communities to stand by and “interpret” for us in our East San Diego town was one with poor white families living in an unincorporated rural town only 20 minutes away from the major teaching hospitals in San Diego. Patients and families walked to the clinic from the “pink ghetto” housing and were plagued by the early crystal methamphetamine culture. The documentary Culture of Hate: Who Are We? dramatically presented the circumstances of a murder by racist teens of a homeless Latino migrant living under the freeway nearby.15 In contrast, the opening of the Reach Out and Read (ROR) center of the Lakeside branch of our East County Health Center illustrated broad-based multicultural community partnerships with native songs and an African storyteller. The ROR program is an early literacy program that encourages parents to read to their children from infancy, promoting brain development and school readiness. Those present included the school nurse, school board members, residents, and pediatricians, including Dr Jean Mullenax (discussed later in this chapter). The San Diego Union-Tribune article celebrated the lives of 2 girls struck by cars nearby with the opening and a positive diversity message.16 Increasingly, they welcomed the Latino population and promoted bilingual staff and materials. A youth group, from the local Kumeyaay tribes who came to the clinic, was chosen for the opening of the National Museum of the American Indian in Washington, DC, to be highlighted alongside other, more recognized tribal youth. Building relationships with those who live in the community, building local capacity, not going in to a community expecting to tell, and truly listening and understanding with respect are key. This should be natural for most child care professionals everywhere. The clinicians perform their history and physical examinations at eye level wherever the children are comfortable and start listening to their feelings as soon as they are verbal. Respect and love for the cross-cultural understanding of medicine is essential for persistence to work! One has to develop far beyond the use of interpreters and develop a yearning to know much more about the importance of each language and culture with whom one works. Programs for learners (students, residents, fellows, other trainees) may be most relevant when they have their continuity clinic in the neighborhood with multicultural staff and access to academic support for developing standards for research, gathering data, use of data, and permission (see Appendix C) from families and communities to use data in a way that it is clear and transparent and will be used to benefit the community. Because the pediatric faculty at UCSD had an advanced community program developed, they were ready to apply for and take advantage of a Dyson Initiative grant, which supported training in the community and

PGCH_ch11_169-182.indd 173

8/20/18 8:02 AM

174 Part 3: Educational Models in Global Health Settings

provided support for CBOs as well as for those residents who had projects to present at meetings.17 Those residents who were able to present their projects at national meetings have been responsive now, nearly 20 years later, about the long-term effect it had on their current advocacy, both national and global, as they share their policies with others.

Transition From the Perspective of the Middle-/Lower-Income Nation These concepts from community pediatrics in the United States translated particularly easily to working well in middle-/lower-resource areas overseas. San Diego is a multicultural city with books and program material for ROR needed in many languages. In San Diego the clinicians began by taking their continuity residents and projects to Tijuana, a mere half-hour from the San Diego hospital work. Our CBO was represented by Madre Ines Trejo, who was the internist/medical director in a clinic on the Tijuana dump. They required that their residents speak Spanish and respect her directions. Pia Pannaraj, MD, MPH, a pediatric resident from UCSD, worked for 2 years during her continuity clinic in the facility in Tijuana. Her project was shared with a fellow generalist Mexican doctor, who subsequently chose to pursue a career in pediatrics. Together, they reported results of health screens in several nearby orphanages. Madre Ines also accompanied us to the northern Mexico native communities to build the capacity of their health committees. Principles of language, communication, importance of respect for values, and long-term collaboration around child health were appreciated and shared with students and residents. Residents worked with a leader in the Kumiai tribe to collect demographic and health data from each indigenous village, which was accepted for a poster presentation in Albuquerque, NM, at the 3rd International Meeting on Indigenous Child Health (2009).18 This endeavor was supported by the Barona Band of Mission Indians in San Diego. Connections and relationships with all these partners led to a deeper understanding of the needs and assets of the native communities in northern Baja, CA, and their readiness to join with our efforts today, all values and processes indicative of persistence in advocacy. These villages are currently ready to move into another phase of sharing cultural language, songs, and dances in return for empowerment of the health committee through visits and distance learning.

Best Practices With Case Examples of Persistence in Advocacy Four examples illustrate the desire to take or recognize the successful effect on early learning as it has evolved in other countries: ▶▶ Ti Moun Annou Li, or Children Let’s Read, led by the Haitian Pediatric Society (HPS) (mainly Drs Emmeline Lerebours and Jacqueline Gautier, and championed by Dr Nicole Prudent). ▶▶ The Philippine Ambulatory Pediatric Association, Inc (PAPA), led by Drs Carmen Ramos-Bonoan and Mutya San Agustin Shaw, who took their trained

PGCH_ch11_169-182.indd 174

8/20/18 8:02 AM

175 Chapter 11: A New Advocacy Paradigm for Education: The Role of Persistence

pediatricians and books to a typhoon disaster site soon after the destruction to train parents and children how to heal with stories. ▶▶ Kimberley Porteus, PhD, decided early in her career to advocate for equity through important educational changes following the end of apartheid (see Appendix C) in South Africa. Her long-term dedication to South Africa and its quest for social justice has led to her involvement coordinating collaboratively with educators at the Nelson Mandela Institute for Education and Rural Development using participatory research for more than 25 years. ▶▶ Follow-up on the long-term relationship with the local Kumeyaay/Kumiai, who are addressing, along with other tribal nations throughout the country, the recognition that the chronic generational toxic stress can be explained with the new science of epigenetics (see Appendix C), as well as that the pediatric response may lie in a return to their language, customs, foods, songs, and stories. There seem to be several powerful examples that the tribal revitalization of language can happen and it is happening around us in many forms. Dr Jean Mullenax is a key player in this ongoing process.

Haiti The HPS leaders have been invited to collaborate with our AAP Section on International Child Health for about 10 years. They have participated in our annual national conferences, been invited to advocacy meetings in Washington, and benefitted from our mutual collaboration before and after the devastating earthquake in 2010. They had been to workshops demonstrating the powerful and proven results of ROR to prepare preschoolers for entry into kindergarten. As a result, they had already begun together to find sources of books for preschool-aged children and had found them lacking in Haiti. US volunteers collected some in the United States (especially from Educa Vision [http://educavision.com] in Florida) and when many of us went to Haiti for various reasons, we took a supply of books with us. Our experience of showing staff and adult caregivers the power of reading books while holding children who have been traumatized was rewarding. They shared how to teach adults with very young children how to hold traumatized infants and children. The main ongoing US champions for the program in Haiti have been Dr Nicole Prudent in Boston and Bronwen J. Anders, MD, FAAP, in San Diego. The benefits of sharing books with children in the preschool years and the instructions for parents, other relatives, siblings, and staff have been increasingly documented: to build resilience through routine bonding and storytelling; to help to overcome the word gap between the wealthy and the poor by increasing vocabulary; and to allow stories to be told, helping children return to happiness. Thus, the Haitian pediatricians have moved along with the support of Haitian diaspora authors, ROR advocates in California Chapter 3 of the AAP, and the Massachusetts AAP chapter, as well as other volunteers helping after the earthquake to keep the program going. Training on the importance of books and early reading was presented in poster form last year at the annual pediatric conference in Haiti. Dr Emmeline Lerebours submitted a poster presentation about the

PGCH_ch11_169-182.indd 175

8/20/18 8:02 AM

176 Part 3: Educational Models in Global Health Settings

program at an AAP Section on International Child Health conference demonstrating how popular the program has become. In Haiti the pediatric leadership has always stated that preparing children for school is as important as taking care of their physical needs, so champions from the United States have helped to model the role of books even in times of great stress, to allow expression of their stories and encourage interactive discussion with readers. Many AAP leaders (eg, Dr Danielle Laraque-Arena, Dr Sean Palfrey, Dr Nicole Prudent, Dr Christopher Carpenter) have contributed their support to empowering this upbeat program to grow. Most of Dr Laraque-Arena’s family has trekked many copies of their book (Manman Zanfan—Mother Child, by Denize Lotu and Boadiba [Haitian writer and artist, respectively]19) down with them to Haiti to be distributed directly to children’s bedsides via the HPS leadership. A workbook for teachers accompanied the first distribution of the book in Haiti. Greater dissemination and evaluation of this method of teaching is needed. During this time the local programs in Haiti supporting Ti Moun Annou Li have identified needs. 1. An increase in board books and other local books written and available in Haiti. 2. A desire from staff at 10 to 15 sites around Haiti who are in various stages of training to be become part of the program. 3. New models for delivery and parent training sites (eg, outpatient nutrition visits to rural communities, infants in the hospital, orphanages). 4. Haitian American or Haitian authors finding a delivery system to deliver books to the bedside by AAP volunteers. The training bookmarks of ROR translated into French and Haitian Creole are a valued and needed addition. The HPS has desired to take over this self-sustaining program, focusing on 3 central hospitals: l’Hôpital de l’Université d’État d’Haïti (the main training hospital), in which the residency program has kept the program going under the talented leadership of Dr Jesse Coliman, supported by Dr Prudent from Boston; l’Hôpital Universitaire de la Paix, in which the program is being run by the new president of the HPS, Dr Florence St. Surin; and St. Damien Pediatric Hospital, managed originally by Dr Jacqueline Gautier, who started the first program in the HIV clinic but is now expanding to the sickle cell clinic and other specialty clinics. In this new phase, HPS leadership will be attempting to give out books for the children to keep, beginning with a volunteer administrator in Haiti who can keep track of books, ensure training needs are met, and to help update all of us on models that work for evaluation. The reading program in Haiti has never had a funded structure in Haiti or the United States. It has kept going under its own momentum from the ongoing enthusiasm of the pediatricians in Haiti. Supporters in the United States, looking for proven ways of helping the children in Haiti to develop resilience and confidence, have provided generous funding. Like all programs whose time is right, they are entering a new stage of support to help to try to keep up with the needs. They will attempt to keep an ongoing supply of books at their disposal. First and

PGCH_ch11_169-182.indd 176

8/20/18 8:02 AM

177 Chapter 11: A New Advocacy Paradigm for Education: The Role of Persistence

foremost, they want to be able to have their generous donors from the United States know that there are new ways to buy books in Haiti. They will want to help the HPS to describe the role of a Haitian administrator who can help us to know how the books have arrived and been received. As the role of talking, singing, and telling stories is defined now in under-resourced countries, they will want models to describe efficacy and sustainability. They hope to help to support a competent network of sites beyond these first 3 that will allow shared successes. As the AAP continues to spread important information in its educational material about early childhood brain development, they feel confident in the advances of neuroscience showing the benefits of programs such as this one being implemented now by pediatricians who recognize the importance of early childhood literacy. After the disasters of the tsunami in 2004 in Indonesia and the earthquake in Haiti in 2010, there arose a great interest in ways to be helpful as pediatricians engaged in global health efforts. Students, residents, and pediatricians in practice became immediately interested in ways to be productive during these emergencies. Understanding the need for long-term capacity building, as opposed to brief drop-in care, was essential in these situations. Listening, mobilizing local resources, and committing to long-term relationships became key with regular trips or by distant communication. Books have become an upbeat ready-made program to model in countries everywhere, especially those countries in disaster prone areas. Our Haitian colleagues attended early workshops on the proven role of books given out in pediatrician offices through ROR and decided that they wanted to start their own program. Drs Prudent and Laraque-Arena and I had been interested simultaneously in collecting book sources to model at the bedside.

The Philippines In 2007, the PAPA, under the leadership of Drs Mutya San Agustin Shaw and Carmen Ramos-Bonoan, initiated an advocacy program to promote early pedi­ atric literacy. Drs San Agustin and Bonoan had implemented ROR in their respective institutions prior to their retirement and on their return to the Philippines began to integrate the ROR model in the pediatric outpatient clinics of several hospitals (Figure 11-1). Finding that there were no available board books in Filipino, ROR Philippines began a collaboration with a publishing company to develop, print, and distribute developmentally and culturally appropriate boards books in Filipino and Filipino/English for infants and preschoolers. Since the implementation of ROR, 2 pilot studies have demonstrated significantly improved home reading orientation with increased parental knowledge and attitude towards early literacy, increased child reading motivation scores, and increased frequency in shared reading activities. Improved auditory and expressive language scores in ROR participants in one of the sites were also observed. Shortly after superstorm Haiyan hit the Philippines in 2014, a team of trained PAPA pediatricians went to the devastated areas, to give books and read to children and families as a way of providing some relief from the terrible events they

PGCH_ch11_169-182.indd 177

8/20/18 8:02 AM

178 Part 3: Educational Models in Global Health Settings

Figure 11-1. Reach Out and Read Philippines is an integral part of several hospital ­pediatric outpatient services.

had experienced. A year later, a follow-up visit was made to the areas where they had gone before to assess the impact of the books after the disaster. More than half of the children interviewed still had the books that they had been given. Parents of younger children described positive emotional and cognitive experiences with the books, while many older children said the books helped them feel better. Reach Out and Read Philippines is now an integral part of several hospital pediatric outpatient services, and also found in community centers, in 2 homes

PGCH_ch11_169-182.indd 178

8/20/18 8:02 AM

179 Chapter 11: A New Advocacy Paradigm for Education: The Role of Persistence

for abandoned infants who are being adopted, and in partnership with a private foundation and local government units to promote early literacy in very low-­ income communities to promote early literacy outside of metro Manila.

South Africa Kimberly Porteus, PhD, became interested in the project of the democratic transformation in South Africa as an undergraduate student involved in the global anti-apartheid movement in the 1980s. She first went to South Africa in 1990 through an organization known for its solidarity work with liberation organizations in the region and worked with federation of democratic trade unions (COSATU) through the process leading up to the first democratic elections. In 2004 she became the first director of the Nelson Mandela Institute for Education and Rural Development (NMI), launched by the late President Nelson Mandela to take forward his legacy in education. Their work symbolizes the 2 themes of this chapter, the role and definition of persistence and the importance of early language resources for the future well-being of children. The patterns of performance in early primary schooling largely reflect the harsh patterns of inequality inherited from apartheid. The public system of education is deeply bifurcated. While approximately 20% of children attend middle class schools with relatively high levels of learner performance, the majority of children who speak an African language attend poor and working class schools. Most analysts suggested that this primarily reflected the poor quality of teachers serving poor and working class schools. The early work of the NMI suggested something slightly different. It suggested that the “problem behind the problem” may lay in the fact that current educational practice did not build on the language resources of African-language–speaking children in the early primary years. With most research, teacher development, and curriculum writing dominated by English-­ speaking professionals, it appeared that taken together, teachers were not prepared to harness children’s language resources for the purposes of learning success. In 2009, a learning architecture was built with the aim of building tools and practices more accountable to the African-language–speaking context. South Africa is a multilingual country, with 11 official languages. There are 9 official indigenous African languages, largely falling into 2 large groupings, Nguni and Sesotho. These are majority languages in South Africa, with millions of speakers. While English is largely the default language of the economy, fewer than 15% of children speak English in their homes. Most children from poor families will not have any English language in their day-to-day home and community lives. The goal of classroom programs was to harness children’s home language resources for the purposes of literacy and learning, while at the same time developing early English-language–speaking competence. In the case of the rural Eastern Cape, the home language of rural children is isiXhosa, falling into the larger Nguni family of languages. Across the past 9 years, early primary schoolteachers, together with researchers and curriculum writers, worked in intensive education design cycles focused on the rural early grade classroom (kindergarten to grade 3.) In the end, this collective of practitioners and researchers has developed both theory and practical tools about how to better build on isiXhosa. This work has

PGCH_ch11_169-182.indd 179

8/20/18 8:02 AM

180 Part 3: Educational Models in Global Health Settings

brought together scholarly inquiry (eg, exploring the details of isiXhosa early learning development) with the work of writing stories, poems, songs, and other learning materials to animate homes, classrooms, and communities. While there is great pressure to only do “teacher training” on a wide scale, the NMI has insisted that the answers to building sustainable solutions—solutions that “stick” in rural classrooms—lies in long-term work that builds meaningful intellectual relationships and learning collectives amongst researchers, teachers, children, and parents living in poor and rural communities.

Kumeyaay/Kumiai Finally, and perhaps most wonderfully, the doctors have come full circle to having the opportunity to work with Dr Jean Mullenax in nearby native communities. She began as a pediatric resident who first worked with us to build the pediatric capacity and quality of the community clinic in nearby East San Diego. They have consistently seen the helpful role bilingual books have played for our population, which is diverse. Dr Mullenax has now been the pediatrician responsible for the high-quality care of the native families nearby for several years, helping to expand the prevention efforts and referrals begun long ago. As the need to develop a ­trauma-informed community has been recognized among tribal leaders, there has arisen a need to understand the pediatric response to help support native families and communities whose path to resilience may come out of our longterm understanding of all the principles described previously as they advocate together to respond to high Adverse Childhood Experiences (ACE) scores. The behavioral clinicians and psychiatrists have begun to address high ACE scores, and it has fallen on pediatric caregivers to seek a response. As the pediatricians see the trauma of grandchildren of parents who they first knew 25 years ago and learn about epigenetic changes leading to generational cycles of abuse and a life expectancy shortened by 20 years compared with that of nonnatives, they are realizing that the ways in which they addressed psychological stress in the past have not worked. There is a current awareness that these communities are at risk of losing their language and traditions. It is possible that only by involving parents or caregivers of new babies, by holding them and reading at birth with bedtime routines (made easier, perhaps, with breastfeeding), might those babies develop resilience and school readiness. It is hoped that with the help of grandparents or elders, recordings of the old and the new, and a renewed urgency to share and save languages, customs, songs, and traditions, these nations and communities have a chance of keeping native languages alive by focusing on enriching culture. Focusing more on the 0- to 6-month age groups, the hope is that children can enter school with pride and resilience. The Kumiai communities from Baja, CA, poor and without continual access to health care, have still kept language, games, songs, and critical creative storytelling alive. Two major hopeful slogans for the Kumeyaay Nation on both sides of the border are “we are one” (despite regional accents) and “we are still here.” They have embarked again on a collaborative health project including ongoing empowerment to health outreach workers in villages in Baja while

PGCH_ch11_169-182.indd 180

8/20/18 8:02 AM

181 Chapter 11: A New Advocacy Paradigm for Education: The Role of Persistence

­ enefitting from their language retention efforts to US Kumeyaay youth volunb teers. The cross-border health collaborative is attempting more telemedicine on simplified charts in English, Spanish, and Kumeyaay.

Conclusions ▶▶ Long-term respect by the community for the persistently committed child

health advocates (educators and pediatricians) will earn us a place in the communities in a mutually respectful way. Determination to stick with the program until it is transitioned to young trainees and local stakeholders enables success. ▶▶ Assisting child advocates in the country to have adult native speakers begin at birth to hold, talk, and read to infants in their local home language in South Africa and Kumeyaay country revives the importance of tribal or native languages to a generalized acceptance of the richness of home languages. School readiness has been assessed by the school success measures in the early years. Barriers have involved long-term prejudice against the native (or, in the case of Haiti, subjugated) tribal language. ▶▶ Research must be, without exception, shared with the native speakers of that language, and it must be decided by them if it is worthwhile for their children. Research per se is frowned on by natives. Long-term suspicion of anthropologists “taking” their stories continues to exist. Trust builds slowly and must be earned through collaboration. ▶▶ New science emphasizing the importance of the first 3 years has come with the understanding of the pliability of the brain and the benefits of early literacy. There is an essential need to facilitate this discussion with local professionals and to allow shared presentations of successes.

References 1. Merriam-Webster Dictionary. Persistent. https://www.merriam-webster.com/dictionary/persistent. Accessed June 22, 2018 2. Gladwell M. The Tipping Point: How Little Things Can Make a Big Difference. Boston, MA: Little, Brown and Co; 2000 3. Laraque D. Global child health: reaching the tipping point for all children. Acad Pediatr. 2011;11(3):226–233 4. Haggerty RJ. The Convention on the Rights of the Child: it's time for the United States to ratify. Pediatrics. 1994;94(5):746–747 5. Todres J. Children's health in the United States: assessing the potential impact of the Convention on the Rights of the Child. Child Welfare. 2010;89(5):37–56 6. Kasper J. The relevance of U.S. ratification of the Convention on the Rights of the Child for child health: a matter of equity and social justice. Child Welfare. 2010;89(5):21–36 7. Laraque D. A moral imperative for children. JAMA. 2009;302(8):892–893 8. O'Connell PM. Annual Leadership Forum attendees vote on Top 10 resolutions. AAP News. http:// www.aappublications.org/content/early/2014/03/20/aapnews.20140320-1. Published March 20, 2014. Accessed June 22, 2018 9. Children’s Environments Research Group. Child friendly places. http://cergnyc.org/portfolio/childfriendly-places. Accessed June 22, 2018

PGCH_ch11_169-182.indd 181

8/20/18 8:02 AM

182 Part 3: Educational Models in Global Health Settings

10. American Academy of Pediatrics. CATCH: Community Access to Child Health. https://www. aap.org/en-us/advocacy-and-policy/aap-health-initiatives/commpeds/catch/Pages/CommunityAccess-to-Child-Health.aspx. Accessed June 22, 2018 11. American Academy of Pediatrics Council on Community Pediatrics. Community pediatrics: navigating the intersection of medicine, public health, and social determinants of children's health. Pediatrics. 2013;131(3):623–628. Reaffirmed October 2016 12. Anders B, Ortiz B. Chapter 5: cultural competency. Community Based Resident Projects Toolkit: A Guide to Partnering with Communities to Improve Child Health. Elk Grove Village, IL: American Academy of Pediatrics; 2005:29–34. http://www.communityforchildren.org/sites/default/files/ AAP_Advocacy_Toolkit.pdf. Accessed June 22, 2018 13. Laraque D. Health promotion: core concepts in building successful clinical encounters. Pediatr Ann. 2008;37(4):225–231 14. McKnight J, Pandak C. New Community Tools for Improving Child Health: A Pediatrician's Guide to Local Associations. Asset Based Community Development Institute, Community Access to Child Health (CATCH) Program Presented at CATCH 2000, National CATCH Meeting, April 15-16, 1999, Oak Brook, IL 15. Harvey L, Barba AJ, Walsh N. Culture of Hate: Who Are We? KPBS-TV San Diego (video series). 2001. OCLC WorldCat number 757415749 16. Krueger A. ‘For Life...’ Health Center dedicates alcove in girls' memory. San Diego Union-Tribune. July 13, 2001: B-1 17. Deely K. UCSD Pediatrics awarded major training grant to extend clinical care into the community. http://ucsdnews.ucsd.edu/archive/newsrel/health/DysonInitiative.htm. Published June 27, 2000. Accessed June 22, 2018 18. Cesena J, Rodriguez A, Montes G, et al. Improving child health in Mexican Kumei indigenous communities. Paper presented at: 3rd International Meeting on Indigenous Child Health; 2009; Albuquerque, NM 19. Lotu D, Boadiba. Manman Zanfan. 2014

PGCH_ch11_169-182.indd 182

8/20/18 8:02 AM

183

CHAPTER 12

Cross-cultural Training of Residents and Medical Students in Global Child Health Fernando S. Mendoza, MD, MPH, FAAP Ronald D. Garcia, PhD Donald A. Barr, MD, PhD

abstract The global migration of children and families from one country to another has increased diversity of pediatric populations worldwide, requiring pediatric health care professionals to develop skills in cross-­ cultural communication. This necessitates the development of communication skills adapted for cultural and linguistic differences and an understanding of the unique social determinants that may affect newcomers to a host country, including the process of acculturation. Effective cross-cultural communication requires understanding one’s implicit biases that might affect the patient interaction and having appropriate interpreter services. Overall, cross-cultural communication is centered on obtaining the patient’s and family’s perspective of the patient’s malady to develop a therapeutic relationship that builds trust between the health care professional and the patient/family. Cultural competency curriculums developed to achieve this goal include the following 5 domains: 1. Students’ understanding of the definition and rationale of cultural competency 2. Influence of cultural/environmental factors 3. Understanding the effect of stereotyping on medical ­decision-making 4. Health disparities and factors influencing health 5. Cross-cultural clinical skills Effective cross-cultural communication requires humility on the part of the health care professional as well. Although the term cultural competency implies an achievable competency, the true goal is to achieve efficacious cross-cultural communication skills, which become refined over time with interaction with patients from a variety of cultures, languages, and social-environmental backgrounds. With the growing diversity of children in the United States and in many other countries globally, the development and continued refinement of these skills is necessary to maintain clinical excellence in pediatric care around the world.

PGCH_ch12_183-200.indd 183

8/20/18 8:07 AM

184 Part 3: Educational Models in Global Health Settings

OPERATING PRINCIPLES INCLUDED (SEE PART 1.) 1. Persistence (genuine advocacy) 2. Partnership (respectful, bidirectional modalities) Competencies Addressed: E1, E3 See Chapter 7, Global Health Education Faculty Competencies.

Key References Lee AL, Mader EM, Morley CP. Teaching cross-cultural communication skills online: a multi-method evaluation. Fam Med. 2015;47(4):302–308 Frintner MP, Mendoza FS, Dreyer BP, Cull WL, Laraque D. Resident cross-cultural training, satisfaction, and preparedness. Acad Pediatr. 2013;13(1):65–71

Teaching Points 1 Migration is increasing the cultural and linguistic diversity of children and their families globally and has significant implications for the practice of pediatrics.

2 Culture is not monolithic but can be modified by social class, racial and

ethnic experiences, gender roles, gender identity, religion, and other factors.

3 The role of social determinants is key in understanding the environmental milieu of immigrant subgroups in the host country.

4 The process of acculturation in immigrant families can have health and behavior implications for the children and youth.

5 All individuals, including health care professionals, as a result of their

personal and social experiences, are subject to implicit bias that affects their interactions with others, particularly those from different cultures.

6 Cross-cultural communication is best achieved by in-person professional interpretation services to provide translation of verbal and nonverbal communication.

7 Cultural competency requires learners to enhance their attitudes, knowledge,

and skills to enrich their cross-cultural communication with diverse patients.

8 Effective models of cross-cultural competency focus on seeing the disease process from the patient’s perspective.

9 Continued valuation of communication skills with diverse patients is key to achieving effective cross-cultural communication, the end point of cultural competency.

PGCH_ch12_183-200.indd 184

8/20/18 8:07 AM

185 Chapter 12: Cross-cultural Training of Residents and Medical Students in Global Child Health

Introduction The United States is undergoing a significant shift in the demographics of its population of children and youth and, with it, a growing diversity of cultures and languages. The US Census estimates that in 2018 half of all children in the United States will be part of a minority race or ethnic group, and while 1 out of every 4 children currently lives in an immigrant family, this proportion is expected to grow to 1 of every 3 by 2050.1,2 This demographic shift has occurred partially as a result of immigration but principally because of differences in birth rates among minority and nonminority populations. For example, over the past 2 decades, 75% of the growth of the US child population has been among Hispanics and Asian Americans, and among these groups, 67% and 85%, respectively, are immigrant families (ie, one parent born outside of the United States).2 The consequence of this demographic shift can been seen in states such as California, where each year the children entering kindergarten speak more than 100 different languages at home. In fact, the US Census Bureau reports that there are 350 languages spoken in the United States, with the 15 largest metropolitan areas in the country each having more than 120 languages.3 If each language represents a different culture or cultural variant, then it can be said that within the United States, there exist 350 different cultures, each possibly with its own sets of health beliefs and behaviors. This degree of diversity is historic and clearly challenges the system of pediatric services in the United States to address differences in culture and language in the provision of health care. In essence, global child health is occurring in our country; as such, addressing cross-cultural training for future pediatricians is essential for pediatric health care in the United States and is also educationally useful for those interested in global pediatrics, particularly in lowand middle-income countries. Indeed, recent analysis of diversity around the word shows that some of the most culturally diverse countries are in Africa (Figure 12-1).4 For example, Chad, which has 8.6 million people, has more than 100 ethnic groups. Therefore, the increase in diversity of a country’s child population is a universal phenomenon that is affecting high-income, upper-middle– income, middle-income, and low-income countries around the world. Accordingly, pediatric health care professionals must embrace the “child diversity challenge,” in the United States and internationally, if they are going to provide high-quality and efficient clinical care. This means being able to effectively communicate with children and families who speak a language different than that of the physician, as well as attempting to understand the family and community and cultural milieu that influences children’s and families’ health beliefs and behaviors. These are essential tasks in providing high-quality and efficient care to children from diverse backgrounds. Moreover, one also needs to consider that children and families with a culture and language different from “mainstream” society commonly have other differences in their social-­ environmental circumstances that can expose them to different social determinants (see Appendix C), which can affect health and well-being. These social determinants also must be considered in the provision of care to these families,

PGCH_ch12_183-200.indd 185

8/20/18 8:07 AM

186 Part 3: Educational Models in Global Health Settings

The countries with the most and least cultural diversity

Less diverse

More culturally diverse

Figure 12-1. Cultural Diversity Around the World From Gören E. Economic effects of domestic and neighboring countries’ cultural diversity. Center for Transnational Studies, University of Bremen Working Paper No. 16/2013:13.

sometimes as much as the differences in language and culture. One of the most influential and common social determinants seen among non-majority groups in this country and others is poverty. For example, in the United States, Spanish-­ speaking immigrant Hispanic children and families are 3 times more likely to live in poverty than non-Hispanic whites.5 Thus, when providing care to Hispanic immigrant children, the social class of the family may modify access and health differences more so than its culture or language. Indeed, poverty is a social determinant that afflicts many children in this country, as it does around the world, affecting not only children’s health and well-being but also their lifetime abilities and achievements.6 Consequently, when we work with culturally different groups, we must ask which differences are culturally or linguistically derived and which come from the effects of other social determinants, including poverty. We believe that training for cross-cultural communication should always acknowledge the patient’s and family’s “context,” which influences the social determinants affecting them. Hence, we approach this chapter on cross-cultural training by also emphasizing the contextual environment of our diverse patients to formulate resident and student training (ie, knowledge, skills, and attitudes) in a way that is holistic to the patient’s needs. Developing knowledge, skills, and attitudes to address the needs of a diverse pediatric population should not just be guided by cultural/linguistic differences alone but also by differences in social determinants that universally affect every health care professional–patient communication, patient and family health beliefs, access to health care, and patient and family’s sense of empowerment.

PGCH_ch12_183-200.indd 186

8/20/18 8:07 AM

187 Chapter 12: Cross-cultural Training of Residents and Medical Students in Global Child Health

This chapter will address cross-cultural training for residents and medical students in global child health by providing a framework for understanding the knowledge, skills, and attitudes that need to be developed if one is to practice effective pediatric care, whether in high-income, upper-middle–income, middle-­ income, or low-income countries. The major factors differentiating between the types of environments will be the kinds and intensity of social determinants and, as we see more and more global migration, the number of cultures encountered in each setting. Accordingly, the next sections address social determinants as modifiers of culture and health and the process of change in culture from one generation to another. This will help frame discussions on cultural competency or, as preferred by the authors, cross-cultural efficacy as a practice, including the need to examine one’s unconscious bias and its effect on health care. Finally, models of cross-cultural efficacy and its evaluation in practice will be presented.

Cultural Competency and Social Determinants Cross-cultural training starts with a definition of culture. The Association of American Medical Colleges (AAMC) defined culture as “integrated patterns of human behavior that include the language, thoughts, actions, customs, beliefs, and institutions of racial, ethnic, social, or religious groups.”7 From the viewpoint of competency, “Cultural and linguistic competence is a set of congruent behaviors, knowledge, attitudes, and policies that come together in a system, organization, or among professionals that enables effective work in cross-cultural situations.”7 The focus on cultural competency has come from efforts to improve health care to populations that have a different culture and language from that of the physician. One of the early proponents of this approach was Arthur ­Kleinman, a medical anthropologist, who directed clinicians to ask patients what they thought the problem was, how they thought they had gotten the disease, what treatment they should receive, and what they feared most about the disease.8 This approach was novel in that it addressed the physician-patient interaction and the diagnosis of disease from the perspective of the patient, rather from that of the physician. It provided a way to understand the biology of disease in the context of the patient’s culture. Over the years, others have developed models that provide various frameworks to address the cultural differences between physicians and patients. The key aspect of an effective model is the ability to assess the patient’s situation and views, while acknowledging that every patient is different, even if they share the same culture. This latter issue is critical because of the risk of developing stereotypes of individuals from the same culture. A stereotype can be likened to a statistical mode providing the most common observation or perspective of a population; while helpful in some regards, it limits our understanding of the variability of the populations, which is most pertinent to the care of the individual patient. Thus, the risk of believing that one can become “culturally competent” is the risk of accepting the “mode” of a culture to reference all individuals of that culture; this is the essence of a stereotype. However, if one uses the mode of a

PGCH_ch12_183-200.indd 187

8/20/18 8:07 AM

188 Part 3: Educational Models in Global Health Settings

culture (eg, learning about the most common beliefs, traditions, social structure) as a starting point, one can explore the other characteristics of patients and their families that vary from that it. These differences are influenced by the social determinants of their sociocultural environment. In addition, a perspective of respect and humility can prove the stance to avoid unconscious bias. Over the past decade, the social determinants of health have gained greater attention in discussions on how to keep individuals and populations healthy. In 2002, the Institute of Medicine published the report, Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care.9 This report highlighted the need for physicians to consider the sociocultural backgrounds of their patients and the unconscious biases physicians might bring to the physician-patient interaction as a result of the patient’s different background. This report made specific recommendations that included improving the physician’s attitude (cultural sensitivity/awareness), knowledge (multicultural issues), and skills (cross-cultural approaches of interacting) in working with diverse patients. Concurrently, the report emphasized the effect of social determinants of health, both current and historical, that have a significant effect on the health and well-being of racial and ethnic minorities and those who are different from mainstream society. The overall thrust of the report highlights that poor health outcomes are a result of both the patient’s social determinants and the problems with our current health care system, which lacks the ability to effectively address these issues. Poverty or very low social class, independent of race/ethnicity, has been viewed as one of the major social determinants leading to poor health.10 While there has been extensive research demonstrating the effects of poverty on children and families, research by Sir Michael Marmot in adults has shown that social class affects health in a linear relationship—that is, at every level of social class, those with a higher social class have better health than those below.11 His findings indicated not only a linear relationship between social class and adult and pediatric diseases but also that this relationship existed in both high-income and low- to middle-income countries. The effect of social class on health seems to result from different types and levels of social determinants associated with every level of social class. Marmot argues that social conditions affect an individual’s freedom and autonomy, as well as their sense of empowerment—the greater the sense of lack of empowerment, the greater the negative effects on the individual’s health. The individual’s sense of empowerment is determined by the ability to control one’s environment and lead a life that is valued.8 Thus, Marmot’s research suggests that as we seek to provide cross-cultural care, we need to be aware of the social class and other social determinants affecting the patient and family’s sense of empowerment and control. Focusing on culture differences without addressing the overlying social determinants will lead to less effective health care. Consequently, understanding the social determinants that are linked to the patient’s local environment is critical in cross-cultural communication. The Centers for Disease Control and Prevention (CDC), through Healthy People 2020, has emphasized the need to create social and physical environments that promote good health for all.12 The CDC has stated, “Understanding the relationship between how population groups experience ‘place’ and the impact of ‘place’ on

PGCH_ch12_183-200.indd 188

8/20/18 8:07 AM

189 Chapter 12: Cross-cultural Training of Residents and Medical Students in Global Child Health

Genes and biology

Social/societal characteristics

Health behaviors

Total ecology

Medical care

Figure 12-2. Determinants of Population Health Per the original source: “The absence of a radial line separating total ecology from social/societal characteristics reflects the lack of quantitative knowledge on these two categories of determinants at this time.” Reprinted from Tarlov AR. Public policy frameworks for improving population health. Ann N Y Acad Sci. 1999;896:281–293; with permission from Wiley.

health is fundamental to the social determinants of health—including both social and physical determinants.” Figure 12-2 demonstrates the model of population health adopted by the CDC from the work of Tarlov, who conceptualized 5 major determinants of population health: genes and biology, health behaviors, medical care, total ecology, and social/societal characteristics.13 Among the social determinants listed by the CDC are culture, social norms and attitudes (eg, discrimination, racism, distrust of government), language/literacy, and social support. These social determinants would be involved in any cross-cultural interaction with a patient, family, or population. Understanding how this affects the patient is key in having an efficacious cross-cultural interaction. For high-income, upper-middle– income, or low- to middle-income countries, as well as indigenous populations/ nations, the World Health Organization (WHO) likewise emphasizes the importance of social determinants on health and its role in patient/population interactions.14 WHO frames health as a social phenomenon determined by the social justice or injustice of the society, resulting in equitable health or health inequities.14 The WHO model relies on the Diderichsen model of the mechanisms of health inequalities.15 This model links individuals’ social context to their social stratification, which is linked to the differential health outcomes they experience. The social context includes the structure and the social relationships of society

PGCH_ch12_183-200.indd 189

8/20/18 8:07 AM

190 Part 3: Educational Models in Global Health Settings

that result in the allocation of resources, opportunities, and empowerment. The social context, therefore, stratifies the population into different levels of exposure to health risk factors (eg, infectious diseases, malnutrition, poor housing, violence, chronic stress); this, in turn, results in differential consequences of poor health. This process is a result of the distribution of power in a society between those who have power to control their environments and those who do not. WHO emphasizes that while there are social causes of health (ie, the social determinants of health), there also are social factors that determine the distribution of these causes in society—the factors that cause health inequities. These factors, which can include income, education, occupation, gender, and race/ethnicity, result in societal stratification. Differences in these factors are commonly seen among those patients whose language and culture differ from mainstream society—the patients for whom health care professionals are challenged to engage in cross-­ cultural interactions. Thus, in summary, in a cross-cultural interaction, one needs to understand the context of living for the patient and family. This will provide an understanding of the social determinants that color the presentation of the cultural difference to the health care professional.

Acculturation and Parenting in Cross-cultural Pediatric Care When a health care professional engages with a family with a different language and culture, it is most likely that the parents are the first generation in the host country. In many cases, the children were also born outside of the country and, thus, both parent and child share a first-generation experience of having concordance of language and culture. In other cases, one, some, or all of the children in an immigrant family (one parent is born outside of the host country) are born in the host country and, therefore, are second-generation children growing up with a language and culture different than their first-generation parents and siblings. Once these children become adults and have children of their own, those children are the third generation, further distancing themselves linguistically and culturally from their first-generation grandparents. Traditionally, the language and culture of second and third generations become more in line with the host country, leading to the process of acculturation; that is, taking on the language and culture of the host country. Eventually, this means that the fully acculturated individual can become completely monolingual and monocultural to the host country’s language and culture. The likelihood of a fully acculturated child becoming monolingual varies by the host country (eg, common in the United States; less common in many European nations), as well as the country of origin. For example, in the United States, Hispanics also can become bicultural, maintaining fluency in both the language and culture of their family’s country of origin. This is more likely to occur with continued migration from the country of origin into the acculturating population. The process of acculturation in an immigrant family can affect cross-cultural communication with a health care professional by interjecting into the ­communication/interaction process different linguistic and cultural views between parents and their children. The acculturation nuance of a cross-cultural

PGCH_ch12_183-200.indd 190

8/20/18 8:07 AM

191 Chapter 12: Cross-cultural Training of Residents and Medical Students in Global Child Health

100 90

1st Generation 2nd Generation

80

3rd Generation

Percent

70 60 50 40 30 20 10

Hi

sp a M nics Pu ex er ica to ns Ri ca Cu ns Do ba m ns in Sa ica n lv ad s Co o lo ran Gu mb s at ian em s Ec al ua an do s r Pe ian ru s Ho via nd ns ur an As s ia Ch ns in e F s As ilip e ia in n o In s di an Ko s Vi rea et na ns m Ja ese Ca pan m es bo e d Pa ian ki s st a La nis ot ia H m ns on gs

0

Figure 12-3. Percent of Children Who Speak Only English by Generation and Group Reproduced with permission from Alba R. Bilingualism Persists, But English Still Dominates. February 1, 2005. Migration Policy Institute. Migration Information Source. https://www.migrationpolicy.org/article/ bilingualism-persists-english-still-dominates. Accessed June 22, 2018. Originally published by the ­Migration Information Source, the online journal of the Migration Policy Institute.

interaction becomes even more critical in interactions with adolescents because it is a period of childhood where identity and self-determination are being established. Indeed, in pediatric encounters involving cross-cultural interactions, the “acculturation gap” between parents and their children is probably the norm. The degree of acculturation among children coming to the United States is shown in Figure 12-3, which displays the percent of children who speak only English at home in the United States. It is clear that while there is variability by different ethnic groups, in general, those in the second generation are linguistically acculturated and usually become monolingual by the third generation. Because the linguistic pattern of individuals is linked with their cultural preferences, these data can be taken to show the degree of acculturation by ethnic groups through each generation. Although some children remain bilingual and bicultural into the second and even third generation, the cultural and linguistic discordance between parents and their children as early as the first generation can lead to communication and behavioral issues among children and youth—what some have labeled dissonant acculturation.16 Acculturation in high-income, upper-middle–income, and low- to middle-­ income countries will pose a challenge for child health care professionals’ efforts to provide effective cross-cultural pediatric care. A key function in pediatric care is to provide support for parenting, so understanding the acculturation gap, the difference between the parents’ view of parenting versus the child/adolescent’s views based on the host culture’s views on “parenting norms,” can lead to dysfunctional child-parent relationships. Moreover, the process of immigrating to another country itself is stressful and can cause periods of depression for parents and their children if there is a lack of social support and a sense of having a future

PGCH_ch12_183-200.indd 191

8/20/18 8:07 AM

192 Part 3: Educational Models in Global Health Settings

in the new country.17 Thus, the pediatric health care professional in both the United States and international environments will need to assess the process of acculturation to determine whether families and their children are adapting well to the host country and provide the support and advocacy to address issues that arise from a dysfunctional process, either internal to the family or external from societal factors, such as anti-immigrant beliefs and policies.

Unconscious Bias in Cross-cultural Communications Patient/family-physician interactions include verbal and nonverbal communication. It is our hope and expectation that every health care professional attempts to effectively engage patients and families during a medical encounter to obtain an accurate medical history, gain the patient’s and family’s confidence, and engage the patient and family in the treatment plan, such that they become part of the treatment plan. This is the essence of patient-centered care. The development of a relationship with a patient and family begins with initial contact and is influenced by the social connectedness of participants—physician and parent/child in the case of pediatrics. Recently, there has been greater attention paid to the barriers to this process, with one barrier being that of unconscious bias (ie, bias from subconscious associations). The supposition is that we begin to develop these biases during childhood and they continue to develop into adulthood, affecting most of our behaviors in a subconscious manner. These biases are implicit (unconscious) rather than explicit (conscious) and, therefore, are difficult to directly recognize. However, tests have been developed to assess these biases by examining personal preferences in different situations; among these tests is the Implicit Association Test (IAT).18 When the IAT for unconscious bias is given to medical students and physicians, it is reported that most unconsciously express a preference for individuals who are white and of a higher social class. Although when tested with clinical scenarios, neither group was found to alter their action based on their unconscious biases,19,20 the argument is made that reading clinical scenarios and actual behavior in the clinical setting is different and that, most likely, unconscious biases are affecting clinical judgments and practices.21 Indeed, the report by the Institute of Medicine, Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care, noted that explicit and implicit biases were contributors to the health disparities in the United States.9 Dealing with unconscious biases requires openness to the idea that one has biases affecting one’s actions, words, and thoughts. Moreover, those in leadership positions can affect health care systems so that they also express unconscious biases (eg, lack of signage in the language appropriate for the minority group; no pictures or art that reflects the population being served, leaving the impression that the health services are not for them; access issues that don’t take into account the situation of the minority populations, like need for public transportation). These unconscious biases are not easily recognized, so it is important that cross-cultural communication begin with one’s evaluation of these implicit biases. The IAT is an example of a test that can be used to begin this self-evaluation. Likewise, focus group discussions to assess the view of the patient population and

PGCH_ch12_183-200.indd 192

8/20/18 8:07 AM

193 Chapter 12: Cross-cultural Training of Residents and Medical Students in Global Child Health

patient satisfaction scores can be useful. One health care system that has embarked on assessing physician’s implicit biases through patient satisfaction scores is Kaiser Permanente, which assesses all physicians with respect to their patient satisfaction scores.22 This process is seen as quality improvement for patient satisfaction and has shown improved performance measures. Although research on unconscious bias has come from high-income countries, the content of the model, understanding people not like us, is something that is universal and, clearly, a challenge in all countries and clinical situations. Clinical excellence requires us to understand not only our patients but also ourselves.

Interpreters of Language and Culture As noted in the Introduction earlier in this chapter, both in the United States and abroad, diversity in populations is exemplified by diversity in languages. In most metropolitan areas of the United States, more than 100 different languages are spoken, and globally, diversity in languages is the norm. Because cross-cultural communication begins with being able to talk to patients and their families, it is essential that an effective interpreter system be used. In the United States, there is substantial evidence that not using a medically trained interpreter can lead to medical errors in pediatric care.23,24 While there are various ways to provide interpreter services (eg, professional, ad hoc, staff), a review of the literature establishes that trained professional interpreters provide the most effective communication with demonstrated improved outcomes.25 Moreover, despite the addition of telephone and video conferencing for interpreter services in the United States, in-person interpreter services seem to still be preferred by health care professionals over video and telephone services, respectively.26 This may be the result of improved social connection with the patient because an in-person interpreter can provide insight to the cultural nuisances in a conversation, including nonverbal communication. For any program receiving federal funding, it is federal law to provide limited English-speaking persons with interpreter services under Title VI of the 1964 Civil Rights Act.27 These services should follow the best practice model set by the National Standards for Culturally and Linguistically Appropriate Services (CLAS) established by the US Department of Health and Human Services.28 Although these standards are only for the United States, they acknowledge through the research used to establish them that clinically excellent patient-centered care starts with effective communication with the patient and family. The 2010 CLAS standards further recommend that culturally and linguistically appropriate services need to be constantly evaluated for their success in achieving effective cross-cultural communication. For any pediatric health care professional, inside and outside the United States, the 2010 CLAS recommendations can be a foundation for excellence in patient-centered care. In situations where inadequate resources, financial or personnel, limit the ­ability to have an in-person interpreter, clinicians have used other alternatives, (phone/video interpreters and bilingual clinical staff). Using these alternatives can be useful for nonserious clinical situations but should be avoided if pos­sible when discussing serious clinical situations with the patient or family.

PGCH_ch12_183-200.indd 193

8/20/18 8:07 AM

194 Part 3: Educational Models in Global Health Settings

Unfortunately, in the United States and many parts of the world, phone/video alternatives and linguistically competent staff beyond 2 languages are not available, thereby requiring health care providers to use family members. While this situation should be avoided, as per CLAS standards, it should always be preceded by asking the patient’s permission to use family/acquaintances as interpreters, and the discussion should be validated by asking the patient to repeat and explain what was conveyed to them. On the horizon, computer language translation may be important in the management of linguistically discordant patient-provider interactions.

Models of Cross-cultural Communication and Best Practices Over the years, there have been a number of models advanced forward to address the issue of cross-cultural communications. In 2005, the AAMC published the report, Cultural Competence Education.7 Its expert panel concluded that a cross-cultural curriculum needs to be assessed by students’ changes in attitudes, knowledge, and skills in each of 5 educational domains of cultural competency: cultural competence (students’ understanding of its rationale, context, and definition); key aspects of cultural competence; understanding the impact of stereotyping on medical decision-making; health disparities and factors influencing health; and cross-cultural clinical skills. These domains demonstrated the intertwined relationship between cultural factors and social determinants and are key in developing a comprehensive curriculum for cultural competency. Numerous models of cultural competency (ie, methods) were obtained from the literature for this report, which give the physician a structure for cross-cultural interactions. Examples of useful models include that from Kleinman et al,8 as well as the BELIEF and LEARN models. BELIEF is an acronym for belief about health (“What caused you illness?”), explanation (“Why did it happen at this time?”), learn (“Help me understand your belief/opinion”), impact (“How is the illness impacting you?”), empathy (“This must be very difficult for you”), and feelings (“How are you feeling about it?”).29 LEARN is an acronym for listen with sympathy and understanding to the patient’s perception of the problem, explain your perceptions of the problem, acknowledge and discuss the differences and similarities, recommend treatment, and negotiate treatment.30 Taking into account the components of the 3 models, a best practice model in cross-cultural communication would include 1. Understanding the patient’s perception of what is the health problem and what is causing it 2. Engaging the patient in helping you understand how the disease is affecting him or her 3. Showing empathy for the patient’s concerns 4. Explaining your perception of the health problem 5. Acknowledging and discussing the differences and similarities 6. Recommending a treatment 7. Negotiating a treatment process that can include treatment for both beliefs of the disease process (Western medicine and cultural medicine)

PGCH_ch12_183-200.indd 194

8/20/18 8:07 AM

195 Chapter 12: Cross-cultural Training of Residents and Medical Students in Global Child Health

This assessment would need to be done in the language of the patient with an understanding of his or her cultural background and the social determinants affecting the patient in his or her environment. This process is applicable for patients in high-income, upper-middle–income, and low- to middle-income countries given that the main thrust of this type of communication is patient- and family-centered care with a focus on the patient’s understanding and beliefs of his or her disease process. It is also clear that the best practice in cross-cultural communication requires openness and humility on the part of the health care professional, with an understanding of the unconscious biases that might affect interactions with patients, whether by the health care professional or the health care system itself. Trainees and physicians could take the IAT to help them understand their implicit bias or what might detract from their ability to achieve clinical excellence with a diverse population of patients. Without understanding one’s implicit biases, possible barriers to achieving patient-centered care may inhibit building a strong physician-patient relationship. How we label the best practice also has relevance to how it is performed. When we speak of competency, in this case cultural competency, the notion is that one is competent or not. Traditionally, competency sets a level of performance that technically can be achieved consistently. Yet, as we noted at the beginning of this chapter, the possible combinations of cultures, languages, and socioeconomic environments are too numerous to count and, thus, we are challenged to say that we are truly culturally competent for all possible patients. Although the intent of those who have encouraged culturally competent care is to consider the factors that go into providing effective cross-cultural care, competency is a misnomer. Instead, if we consider the process of cross-cultural communication as a skill that is developed and continues to be refined over time, then our labeling of this skill needs to better fit the reality of cross-cultural communications. Moreover, if we embed the skill of effective cross-cultural communication into clinical excellence, patient-centered care, and quality improvement, it becomes core to the development of an efficient high-quality health care system in any global setting. Consequently, we believe that framing cross-cultural communication in clinical care as a clinical skill that needs to be refined for each patient’s language, cultural, and socioeconomic environment is more in line with the reality of clinical practice. Núñez has named this process of continually refining one’s skills in cross-cultural communications as cross-cultural efficacy.31 Cross-cultural efficacy is both a skill that needs to be continually grown and refined as one interacts with patients from different backgrounds and a mind-set that, beyond clinical care, informs therapeutic and preventive interventions, research, education, and health policy involving diverse individuals. Indeed, as we strive for patient- and family-centered care to add value to our health care system (improved outcomes/costs), we will come to understand that effective cross-cultural communication is essential. Finally, we need to consider the culture of medicine and how it adds or detracts from patient-centered care for diverse patient populations. Medical environments have their own unique cultures and, most of the time, physicians and staff are unaware of the implications for patients. To address this, Tervalon and Murry-

PGCH_ch12_183-200.indd 195

8/20/18 8:07 AM

196 Part 3: Educational Models in Global Health Settings

García developed the concept of cultural humility to reflect the power imbalance between the patient and health care professional and system.32 Their recommendations are that physicians and other health care professionals need to reflect on the power imbalance: “Cultural humility incorporates a lifelong commitment to self-evaluation and critique, to redressing the power imbalances in the ­physician-patient dynamic, and to developing mutually beneficial and non-­ paternalistic partnerships with communities on behalf of individuals and defined populations.”32 This applies in global settings of any health care system. The patient engagement with the physician will be in an environment that will be comfortable to the physician but usually new to the patient and family. If the health care interaction can start with a sense of calmness and assurance that the “healing place” is welcoming, cross-cultural communication will be more effective and productive. Indeed, while individuals can have implicit bias, so too can the clinical environment. In such a situation, demonstration of empathy on the part of the physician (“I am sorry—I know how confusing a medical center can be for anyone! I get confused when I go for my own medical care!”) can be very reassuring to the newly arrived family.

An Environmental Scan of Cross-cultural Training Where do we stand in cultural competency training in pediatrics? A recent survey of 131 departments of pediatrics in the United States showed that 90% of responding departments (49% response rate) had cultural competency training for residents and 75% for faculty.33 Although almost all pediatric departments have some form of cultural competency training, the training is quite variable in its form and nature. These findings are in the context of a decade-long effort by the American Academy of Pediatrics (AAP) to encourage cultural competency training of all medical students, residents, and pediatricians.34 In 2012, the AAP published a policy statement, “Patient- and Family-Centered Care and the Pediatrician’s Role.”35 This policy strengthens the relationship between cross-cultural communication and patient-centered care, in essence making cultural competency necessary to achieve patient-centered care in our current diverse society. Among the recommendations were those that related directly to achieving the skill of cross-cultural efficacious communication: listening to and respecting every child and his or her family; ensuring flexibility for needs, beliefs, and cultural values; engaging in developing partnership of care and care services; and building on strengths of families. These recommendations reflect the values and objectives of what has been traditionally labeled cultural competency. Consequently, with this policy’s focus on patient- and family-centered care, culturally competent care should now be considered equal to and the same as patient-centered care. Hopefully, this will not only further increase the number of physicians who use cross-cultural communication skills in all patient encounters but also encourage improved and more standardized training in the development of cross-cultural communication skills. In upper-middle–income or low- to middle-income countries, cross-cultural communication skills are likewise important to provide patient-centered care;

PGCH_ch12_183-200.indd 196

8/20/18 8:07 AM

197 Chapter 12: Cross-cultural Training of Residents and Medical Students in Global Child Health

however, as noted by WHO, negative social determinants have a greater prevalence based on higher levels of poverty, greater variability in resource distribution, and sociopolitical inequities affecting health.15 Moreover, the interface of health and public health may be much greater in upper-middle–income or low- to middle-income countries because of more environmental and social factors affecting health. Under these circumstances, in addition to providing culturally efficacious care, health care professionals will have to consider how to similarly engage in culturally efficacious public health communications. This would necessitate understanding the literacy issues as well as language and culture of the targeted populations. This requires strong community links to create effective public health communications. Not infrequently, lower resourced countries must rely on alternative health workers, such as community health workers, to make these public health interventions. These individuals, with a keen understanding of the community, can be very effective in a system of health care by assisting health care professionals in understanding, relating, and influencing their communities of patients and families.36 Indeed, even in the United States, community health workers have been shown to decrease mortality and improve preventive care.37 Recent efforts at transforming the US health care system by better coordinating with community-based organizations, using care managers and navigators, and shifting care to home-based services and home visits, are also promising. Overall, as health care becomes more patient and community centered, the skill of effective communication becomes more critical whether it is in face-toface clinical situations or advancing public health initiatives.

Measuring and Adjusting Cross-cultural Communication Like any other clinical skill, refining cross-cultural communication requires ongoing assessment. The assessment of culture competency curricula has been problematic because of the difficulties in defining what is being assessed. Most curricula are assessed by measuring the degree of improvement in knowledge, skills, and attitudes, measured by standardized testing, either questionnaires or simulations. However, the true test is what happens in the clinical situation; is the physician able to engage in effective cross-cultural communication with the patient and family? While this can be done by direct or indirect observations in research studies of cultural competency, this process is not possible as a routine part of clinical practice. Nonetheless, there are some measures, such as patient satisfaction, that can help the physician to understand the patient’s perspective of the clinical encounter. Patient satisfaction is a measure frequently used by health care systems to assess the patient’s perspective of overall quality. Although many aspects of a visit can affect patient satisfaction, and there is some question about how strongly it relates to health outcomes, there is an association to the relationship developed between physicians and patients.38 As mentioned previously, some health care systems have embarked on using this measure to modify physician practices by using patient satisfaction as an outcome of the clinical encounter. Despite their limitations, patient satisfaction measures can be a tool to assess how a physician’s cross-cultural communication skills are developing and, in addition

PGCH_ch12_183-200.indd 197

8/20/18 8:07 AM

198 Part 3: Educational Models in Global Health Settings

to other assessments that might be used by health care systems, such as focus groups, can be extremely useful in developing one’s cross-cultural efficacy in a clinical setting.

Conclusion For a pediatric health care professional, patient/family-centered care is the summation of what we consider quality care. Understanding that the demographics of children in the United States and globally are changing because of migration, and that health is an interaction between biology and social determinants, leads to the conclusion that developing knowledge, skills, and attitudes that support effective cross-cultural communication is a necessity for the present and future practice of pediatrics. This training should start on the first day of medical school and continue throughout one’s career. In the end, the role of a pediatrician or any clinician is to be a healer of patients and their families, and this role is based on the ability to establish the “healing connection.” Constructing child health care from a global perspective to include social determinants of health and effective cross-cultural communication will allow us to understand the needs of children in East Los Angeles and on the plains of Kenya. Both areas are seeing a change in their demographics, and both need all their children and families to be healthy and successful. Indeed, these are universal goals of all nations. Therefore, instructing health care professionals in all nations to be the tool to achieve that goal should be a high priority. Hopefully, it would also allow us to ask each other the traditional greeting of Maasai warriors, “Casserian Engeri,” which translates to “And how are the children?” and then give the response, “All the children are well.”

References 1. Ortman JM. U.S. Population Projections: 2012 to 2060. Presentation for the FFC/GW Brown Bag Seminar Series on Forecasting. United States Census Bureau, February 7, 2013. Washington, DC. https://www2.gwu.edu/~forcpgm/Ortman.pdf. Accessed June 22, 2018 2. Passel JS. Demography of immigrant youth: past, present, and future. Future Child. 2011;21(1): 19–41 3. US Census Bureau. Census Bureau reports at least 350 languages spoken in U.S. homes. Release #CB15-185. https://www.census.gov/newsroom/press-releases/2015/cb15-185.html. Published November 3, 2015. Accessed June 22, 2018 4. Morin R. The most (and least) culturally diverse countries in the world. Pew Research Center Web site. http://www.pewresearch.org/fact-tank/2013/07/18/the-most-and-least-culturally-diversecountries-in-the-world. Published July 18, 2013. Accessed June 22, 2018 5. Javier JR, Festa N, Florendo E, Mendoza FS. Children in immigrant families: the foundation for America’s future. Adv Pediatr. 2015;62(1):105–136 6. Brooks-Gunn J, Duncan GJ. The effects of poverty on children. Future Child. 1997;7(2):55–71 7. Association of American Medical Colleges. Cultural Competence Education. Washington, DC: Association of American Medical Colleges; 2005. https://www.aamc.org/download/54338/data. Accessed June 22, 2018 8. Kleinman A, Eisenberg L, Good B. Culture, illness, and care: clinical lessons from anthropologic and cross-cultural research. Ann Intern Med. 1978;88(2):251–258 9. Smedley BD, Stith AY, Nelson AR, eds. Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care. Washington, DC: National Academies Press; 2003

PGCH_ch12_183-200.indd 198

8/20/18 8:07 AM

199 Chapter 12: Cross-cultural Training of Residents and Medical Students in Global Child Health

10. Cervantes A, Keith L, Wyshak G. Adverse birth outcomes among native-born and immigrant women: replicating national evidence regarding Mexicans at the local level. Matern Child Health J. 1999;3(2):99–109 11. Marmot M. Health in an unequal world. Lancet. 2006;368(9552):2081–2094 12. Office of Disease Prevention and Health Promotion. Social determinants of health. HealthyPeople. gov Web site. http://www.healthypeople.gov/2020/topics-objectives/topic/social-determinantsof-health. Accessed June 22, 2018 13. Tarlov AR. Public policy frameworks for improving population health. Ann N Y Acad Sci. 1999;896:281–293 14. World Health Organization. A Conceptual Framework for Action on the Social Determinants of Health: Social Determinants of Health Discussion Paper 2. Debates, Policy & Practice, Case Studies. Geneva, Switzerland: World Health Organization; 2010. http://www.who.int/ sdhconference/resources/ConceptualframeworkforactiononSDH_eng.pdf. Accessed June 22, 2018 15. Diderichsen F. Understanding health equity in populations—some theoretical and methodological considerations. In: Arve-Parès B, ed. Promoting Research on Inequality in Health. Stockholm, Sweden: Swedish Council for Social Research; 1998 16. Bornstein MH, Bohr Y. Immigration, acculturation and parenting. Encyclopedia on Early Childhood Development. April 2011. http://www.child-encyclopedia.com/sites/default/files/ textes-experts/en/664/immigration-acculturation-and-parenting.pdf. Accessed June 22, 2018 17. Cote LR. Immigration and acculturation in childhood. Encyclopedia on Early Childhood Development. April 2011. http://www.child-encyclopedia.com/sites/default/files/textes-experts/ en/664/immigration-and-acculturation-in-childhood.pdf. Accessed June 22, 2018 18. Greenwald AG, Nosek BA, Banaji MR. Understanding and using the Implicit Association Test: I. An improved scoring algorithm. J Pers Soc Psychol. 2003;85(2):197–216 19. Haider AH, Sexton J, Sriram N, et al. Associations of unconscious race and social class bias with vignette-based clinical assessments by medical students. JAMA. 2011;306(9):942–951 20. Sabin JA, Greenwald AG. The influence of implicit bias on treatment recommendations for 4 common pediatric conditions: pain, urinary tract infection, attention deficit hyperactivity disorder, and asthma. Am J Public Health. 2012;102(5):988–995 21. van Ryn M, Saha S. Exploring unconscious bias in disparities research and medical education. JAMA. 2011;306(9):995–996 22. Newhouse D. Service score segmentation of diverse populations to improve patient and physician satisfaction—a mulitcase quality improvement study. Perm J. 2009;13(4):34–41 23. Flores G, Law MB, Mayo SJ, et al. Errors in medical interpretation and their potential clinical consequences in pediatric encounters. Pediatrics. 2003;111(1):6–14 24. Flores G. The impact of medical interpreter services on the quality of health care: a systematic review. Med Care Res Rev. 2005;62(3):255–299 25. Karliner LS, Jacobs EA, Chen AH, Mutha S. Do professional interpreters improve clinical care for patients with limited English proficiency? A systematic review of the literature. Health Serv Res. 2007;42(2):727–754 26. Locatis C, Williamson D, Gould-Kabler C, et al. Comparing in-person, video, and telephonic medical interpretation. J Gen Intern Med. 2010;25(4):345–350 27. Limited English Proficiency. Common language access questions, technical assistance, and guidance for federally conducted and federally assisted programs. LEP.gov Web site. http://www.lep.gov/faqs/faqs.html#Four_Title_VI_Regs_FAQ. Accessed June 22, 2018 28. US Department of Health and Human Services Office of Minority Health. National Standards for Culturally and Linguistically Appropriate Services (CLAS) in Health and Health Care. Think Cultural Health Web site. https://www.thinkculturalhealth.hhs.gov/pdfs/ EnhancedNationalCLASStandards.pdf. Accessed June 22, 2018 29. Dobbie AE, Medrano M, Tysinger J, Olney C. The BELIEF instrument: a preclinical teaching tool to elicit patients’ health beliefs. Fam Med. 2003;35(5):316–319 30. Berlin EA, Fowkes WC. A teaching framework for cross-cultural health care. Application in family practice. West J Med. 1983;139(6):934–938

PGCH_ch12_183-200.indd 199

8/20/18 8:07 AM

200 Part 3: Educational Models in Global Health Settings

31. Núñez AE. Transforming cultural competence into cross-cultural efficacy in women’s health education. Acad Med. 2000;75(11):1071–1080 32. Tervalon M, Murray-García J. Cultural humility versus cultural competence: a critical distinction in defining physician training outcomes in multicultural education. J Health Care Poor Underserved. 1998;9(2):117–125 33. Mendoza FS, Walker LR, Stoll BJ, et al. Diversity and inclusion training in pediatric departments. Pediatrics. 2015;135(4):707–713 34. American Academy of Pediatrics Committee on Pediatric Workforce, Ensuring culturally effective pediatric care: implications for education and health policy. Pediatrics. 2004;114(6):1677–1685. Reaffirmed February 2008 35. American Academy of Pediatrics Committee on Hospital Care, Institute for Patient- and Family-Centered Care. Patient- and family-centered care and the pediatrician’s role. Pediatrics. 2012;129(2):394–404 36. Perry H, Zulliger R. How Effective Are Community Health Workers? An Overview of Current Evidence with Recommendations for Strengthening Community Health Worker Programs to Accelerate Progress in Achieving the Health-related Millennium Development Goals. Baltimore, MD: John Hopkins Bloomberg School of Public Health; 2012 37. Viswanathan M, Kraschnewski J, Nishikawa B, et al. Outcomes of community health worker interventions. Evid Rep Technol Assess (Full Rep). 2009;(181):1–144 38. Manary MP, Boulding W, Staelin R, Glickman SW. The patient experience and health outcomes. N Engl J Med. 2013;368(3):201–203

PGCH_ch12_183-200.indd 200

8/20/18 8:07 AM

201

CHAPTER 13

The Role of Simulation in Health Education Globally: A Review of the Neonatal Resuscitation Program and Helping Babies Breathe Beena D. Kamath-Rayne, MD, MPH, FAAP Michael K. Visick, MD, FAAP Sara K. Berkelhamer, MD, FAAP

abstract In 2010, the Neonatal Resuscitation Program became the first life support resuscitation program to formally incorporate simulation-­ based training with debriefing as an educational methodology. Concurrently, a simplified simulation-based neonatal resuscitation program called Helping Babies Breathe (HBB) was created, with the goal of providing low-cost, portable programming to teach basic neonatal resuscitation to birth attendants in low- and middle-income countries. Early studies evaluating the efficacy of HBB demonstrated that facility-­ based implementation has the potential to reduce rates of early (,24 hour) neonatal mortality and stillbirth. Subsequent investigations that have coupled HBB training with quality improvement efforts, ongoing practice, and refresher training have shown even greater effect on neonatal mortality and stillbirth rates. However, the ideal frequency of skills practice and refresher training required to retain resuscitation skills remains poorly defined. Challenges exist in defining optimal practices, as recommendations may vary by the cadre of health care professional, education level, and access to ongoing delivery room ­experience. While simulation-based strategies have been shown to be effective at improving educational and clinical outcomes, the use of simulation in global health settings is challenged by hurdles such as resource limitations (complex equipment, supply chain, and expense), time intensity, dependence on skilled educators, and acceptance of simulation as a teaching strategy.

PGCH_ch13_201-218.indd 201

8/20/18 8:41 AM

202 Part 3: Educational Models in Global Health Settings

OPERATING PRINCIPLES INCLUDED (SEE PART 1.) 1. Positive strategies (rigorous, evidence based, ethically sound, teachable, replicable, sustainable) 2. Partnership (respectful, bidirectional modalities) Competencies Addressed: E1, E2, E3, E4 See Chapter 7, Global Health Education Faculty Competencies.

Key References Cheng A, Morse KJ, Rudolph J, Arab AA, Runnacles J, Eppich W. Learner-centered debriefing for health care simulation education: lessons for faculty development. Simul Healthc. 2016;11(1):32–40 Devine LA, Donkers J, Brydges R, Perelman V, Cavalcanti RB, Issenberg SB. An equivalence trial comparing instructor-­regulated with directed self-regulated mastery learning of advanced cardiac life support skills. Simul Healthc. 2015;10(4):202–209 Rule ARL, Tabangin ME, Cheruiyot D, Muerik P, Kamath-Rayne BD. The call and the challenge of pediatric resuscitation and simulation research in low-resource settings. Simul Healthc. 2017;12(6):402–406

Teaching Points 1 Neonatal mortality and outcomes of asphyxia in low- and middle-income

countries are influenced by implementation of resuscitation programs, as well as the combination of evidence-based resuscitation science and optimization of educational efficiency.

2 Simulation-based training of neonatal resuscitation in low- and middle-­

income countries reduces rates of stillbirth and improves early (, 24 hour) neonatal mortality; however, long-term survival and neurodevelopmental outcomes remain unknown.

3 A simulation-based neonatal resuscitation program designed for low- and

middle-income countries, Helping Babies Breathe, improves the knowledge, confidence, and skills of health care professionals, but these effects can be quickly lost without supportive supervision, ongoing practice, and refresher training.

4 Helping Babies Breathe emphasizes the strengths of simple simulation-based training coupled with quality improvement and ongoing practice to further reduce the burden of birth asphyxia worldwide.

PGCH_ch13_201-218.indd 202

8/20/18 8:41 AM

203 Chapter 13: The Role of Simulation in Health Education Globally: A Review of NRP and HBB

Context

A History of Simulation-Based Training in Neonatal Resuscitation Simulation-based training has been used in health care settings to allow health care professionals to face lifelike clinical scenarios and behave as they might in a real-life situation, thereby practicing procedural skills and improving confidence and clinical performance without causing undue risks to patients. In particular, simulation-based training for resuscitation (the response to sudden deterioration in physiologic state in adult and pediatric populations) has been shown to improve knowledge, timing of skills, and patient outcomes in a meta-analysis that evaluated 182 studies including 16,636 patients.1 Neonatal care inherently begins with stabilization, with the goal of delivering safe, effective, and efficient care to newborn patients. Simulation and debriefing are the methods of practice and coaching to accomplish those goals.2 In fact, neonatology has long been a leader in adopting simulation-based training to teach resuscitation, as the earliest pediatric articles describing this educational approach focused on neonatal care.2–4 The Neonatal Resuscitation Program (NRP) first incorporated simulation and debriefing into the curriculum with the release of the sixth edition in 2010, leading the way for other resuscitation programs, such as Pediatric Advanced Life Support (commonly known as PALS), Advanced Cardiac Life Support (commonly known as ACLS), and Advanced Pediatric Life Support (commonly known as APLS), to follow suit.2,5 The most recent seventh edition of NRP includes a continued emphasis on s­ imulation-based education to facilitate training in communication, teamwork, and behavioral skills associated with resuscitation.6 Simulation is used for formative and summative assessments using basic and integrated skill stations. These evaluations are completed prior to participating in a multidisciplinary “mega­code” simulation, which focuses on communication and team behaviors.7 On a global health scale, neonatal resuscitation has been shown to decrease rates of neonatal mortality due to one of the major causes of death, birth asphyxia (or intrapartum-related events).8 A recent meta-analysis evaluating 20 trials with more than 1.6 million births demonstrated that neonatal resuscitation training decreases risk of stillbirth by 21%, 7-day neonatal mortality by 47%, 28-day neonatal mortality by 50%, and perinatal mortality by 37%.8 Thus, proper implementation of NRP provides the opportunity to save hundreds of thousands of newborn lives.9,10 Helping Babies Breathe (HBB) is a simplified, low-tech, portable, skills-based educational program in neonatal resuscitation, designed to address the goal of having a skilled attendant capable of providing safe, effective, and efficient neonatal resuscitation at every delivery regardless of where the delivery occurs.11,12 Given that more than 50% of neonates are born in home-based settings globally that may be far from medical facilities, this presents significant obstacles to widespread use and implementation of NRP or other, more technical neonatal resuscitation programs.13 While HBB is grounded in the same scientific evidence as NRP

PGCH_ch13_201-218.indd 203

8/20/18 8:41 AM

204 Part 3: Educational Models in Global Health Settings

and undergoes a comparable reevaluation of evidence every 5 years, it requires different strategies for knowledge transfer due to structural challenges of health systems, resource limitations, variable knowledge base of learners, and differences in cultural practices and beliefs.4,14 The curriculum content is highly pictorial in nature and emphasizes translating evidence into actions by focusing on the basic interventions that save lives (ie, drying, warmth, stimulation, and effective bag-mask ventilation [BMV]). Helping Babies Breathe stresses efficient assessment and response to ensure that all babies are breathing within the crucial first minute of life, or The Golden Minute. Helping Babies Breathe relies heavily on active learning in pairs coupled with practice of skills using a neonatal simulator.14 Indeed, hands-on simulation-based training is a key component of an HBB workshop, where the participants proceed through the components of the action plan (Figure 13-1) step-by-step and add subsequent skills to their simulation practices until the course culminates in 2 objective structured clinical evaluations (OSCEs). One OSCE (labeled A) takes the participant through the actions of preparing for birth and performing the initial steps of resuscitation. The second OSCE (labeled B) challenges the learner with a scenario in which a newborn did not respond to the initial steps of care and requires BMV. These OSCEs serve as summative and formative evaluations for HBB, with the intent to serve as a “test” for demonstrating skills and knowledge after HBB training, in addition to an opportunity to self-reflect, debrief, and receive feedback from peers and HBB facilitators.15 Both NRP and HBB fit well within a 6-step pedagogical framework for the use of simulation as a procedural skills-training platform. This framework—Learn, See, Practice, Prove, Do, and Maintain (LSPPDM)—was based on a review and critical synthesis of the literature.7,16 The LSPPDM framework (Table 13-1) is structured such that teaching and learning procedural skills start with a cognitive phase (learn and see) and move to a psychomotor phase (practice, prove, and do).16 Further changes to NRP or HBB that enhance implementation of this training paradigm may enhance simulation and procedural skills training. As such, simulation-based training is a powerful tool used by NRP and HBB to increase provider competence in essential lifesaving skills as well as confidence in enacting steps of neonatal resuscitation. Medical education research assessing efficacy of simulation-based training should be rigorously evaluated with the same translational science measures that are applied to biomedical research to track the advances from bench to bedside.17 This includes improved results achieved in the educational or simulation laboratory (T1-level science), which transfer to improved patient care practices (T2-level science) and, finally, improved patient outcomes and public health (T3-level science). Simulation-based research has often had challenges demonstrating improved outcomes at the T2 and T3 levels. A meta-analysis published in 2014 that specifically analyzed the benefits of simulation-based training with neonatal resuscitation education concluded that the evidence for such training was limited and suggested that further large, randomized controlled trials were required before broadly recommending ­simulation-based training for neonatal resuscitation.18 Moreover, most of the studies included were from well-resourced settings, and the application of this

PGCH_ch13_201-218.indd 204

8/20/18 8:41 AM

Figure 13-1. Helping Babies Breathe Action Plan Reproduced with permission from American Academy of Pediatrics. Helping Babies Breathe. 2nd ed. Elk Grove Village, IL: American Academy of Pediatrics; 2016.

PGCH_ch13_201-218.indd 205

8/20/18 8:41 AM

Helping Babies Breathe (HBB)

• Self-study of NRP textbook and multimedia sources • eSim

• Self-study of provider guide prior to workshop • Multimedia sources at Helping Babies Survive (http://hbs.aap.org)

See Demonstration by instructor

• Demonstration by instructor during NRP course

• “Explain and Demonstrate” by facilitator

Practice Formative assessment on simulator (includes deliberate practice)

• Skills station using performance checklist

• “Practice key skills.” • Practice exercises with checklist.

Prove Summative assessment on simulator (includes mastery learning, competency-based assessment and feedback)

• Performance skills stations • Integrated skills stations (“megacode”) • Team simulation with debriefing

• Objective structured clinical evaluations

Do Performance on human (direct supervision, ­performance-based assessment and feedback)

• Supervision of new NRP providers

• Supervision of new HBB providers • Debriefing and case reviews after providing resuscitation

Maintain • Recurrent training Maintenance of skill through clinical practice • NRP-based simulations and “boosters” supplemented by simulation as needed (procedure logs, individual continuous quality improvement, maintenance of certification)

• Systems of ongoing practice • Low-dose high-frequency practice

Derived from the pedagogical framework for procedural skill in medicine put forth by Sawyer T, White M, Zaveri P, et al. Learn, see, practice, prove, do, maintain: an ­evidence-based pedagogical framework for procedural skill training in medicine. Acad Med. 2015;90(8):1025–1033. Neonatal Resuscitation Program steps that comply with each component were derived from Ades A, Lee HC. Update on simulation for the Neonatal Resuscitation Program. Semin Perinatol. 2016;40(7):447–454.

206

Neonatal Resuscitation Program (NRP) Learn Learning about procedure via reading, videos, and online training

Part 3: Educational Models in Global Health Settings

PGCH_ch13_201-218.indd 206

Table 13-1. The Learn, See, Practice, Prove, Do, and Maintain Framework for Procedural Skill Training in Medicine

8/20/18 8:41 AM

207 Chapter 13: The Role of Simulation in Health Education Globally: A Review of NRP and HBB

statement to low- to middle-income countries remains unclear. Well-designed implementation trials of HBB are greatly needed to evaluate educational efficacy as well as clinical outcomes in low- to middle-income countries where the burden of neonatal mortality is highest. As the international community commits to the goals set forth by the Every Newborn action plan to reduce neonatal mortality to a worldwide target of 7 per 1,000 live births by 2035,19 such evidence is critical in defining the most cost-effective and impactful interventions to implement. In this review, we will present the current status of translational evidence in support of simulation-based training for neonatal resuscitation with a particular focus on HBB in low- and middle-income settings.

Simulation-Based Training and Educational Outcomes (T1-Level Science) Since the release of HBB in 2010, initial studies of its implementation involved evaluations of acceptability by learners and assessments of learners’ knowledge and skills immediately before and after the course. One of the initial studies of HBB, a formative educational evaluation by Singhal et al,20 reported high satisfaction with the course at training sites in Kenya and Pakistan. The multiple-choice questionnaire (MCQ) and BMV skills checklist were administered before and after the course, while OSCEs A and B were given only following training. After the course, facilitators and learners at both sites showed improvements in MCQ pass rates. Surprisingly, the performance on the BMV skills checklist was low, indicating that mastery of this skill and integration into the overall action plan for HBB would require additional practice beyond that provided with the workshop as well as continued learning and ongoing mentorship.20 This educational evaluation influenced modifications of HBB materials to include continued education, which was incorporated into the final version of the first edition. Subsequent studies in Rwanda and Ethiopia also showed that the HBB materials were well accepted and course participation improved knowledge and skills.21,22 One-hundred-eighteen participants in a course in Rwanda had improved performance on the MCQ test with means of 77% and 91% before and after training, respectively. The OSCE B was administered after the workshop, and course participants demonstrated a mean score of 89%, with 64% of trainees passing. An assessment of participants 3 months after training indicated that MCQ scores were maintained; however, performance on OSCE B was compromised, with a decrease in the mean score to 83% and a pass rate of only 43% (P , 0.01).22 Similarly, in Ethiopia, a pre- versus post-course evaluation involving 111 participants using an abbreviated version of the MCQ showed significant improvements in knowledge, with scores increasing from 8.7 out of 10 to 9.4 out of 10 (P , 0.01). Pretraining differences between physicians and nonphysicians were also noted to disappear in the post-training evaluations.21 Finally, a study of HBB participants in a community hospital in Honduras showed significant improvements in mean scores for MCQ, BMV skills checklist, and OSCE B with training.23 In this study, physicians scored higher in the pre-workshop assessments than nurses; however, nurses demonstrated greater improvement,

PGCH_ch13_201-218.indd 207

8/20/18 8:41 AM

208 Part 3: Educational Models in Global Health Settings

resulting in no significant difference between physician and nurse performance after training.23 A study in Sudan used OSCE B to evaluate the resuscitation skills of 71 village midwives, 61% of whom were functionally illiterate, prior to and 3 and 12 months after HBB training.24 Prior to HBB, improperly performed resuscitation practices included stimulation of the mannequin by holding its legs, shaking it, slapping it, blowing on the mannequin’s face, or providing mouth-to-mouth resuscitation. Following training, the HBB mannequin and resuscitation equipment remained available at the local medical centers for the midwives to continue practice during their biweekly visits. Evaluation at 3 and 12 months after training identified significant improvements in drying and stimulation, cutting the umbilical cord for movement to an area of ventilation, initiation of ventilation within The Golden Minute, and correct application of the mask, as well as appropriate rate of ventilation. Collectively, these studies have evaluated training outcomes of HBB in a wide range of environments and have included health care professionals of variable literacy and educational and clinical experience. The consistent findings of improved knowledge and demonstration of steps of resuscitation after training supports the simulation-based educational approach used by HBB and highlights the strengths of hands-on, interactive educational strategies in teaching new skills and clinical content.

Simulation-Based Training and Skills Performance in a Clinical Setting (T2-Level Science) Perhaps a more relevant question of the impact of training is the effect on skills performance in a clinical setting. A one-day HBB workshop conducted in Tanzania evaluated 39 health care professionals before and 27 after training and, similar to the studies mentioned previously, identified significant improvement in performance on OSCE A and B (P , 0.02 for both measures).25 This study included 14 months’ observation of delivery room management before (n 5 2,745 deliveries) and after (n 5 3,116 deliveries) HBB training and identified decreased use of stimulation in the delivery room after HBB training, while the number of babies suctioned and/or ventilated at birth did not change.25 However, there were no HBB retrainings, no local ownership, and no HBB action plans implemented in the labor ward to facilitate translation of clinical skills to the delivery room. In Honduras, a group of 70 health care professionals was trained in HBB and deliveries were observed over the course of an 8-month period. Those HBB-­ trained personnel dried and stimulated nonbreathing newborns 94.4% of the time, whereas personnel not trained in HBB only performed this step 55.3% of the time (P , 0.01).26 In addition, only 1 of the 94 deliveries (1.1%) attended by HBB-trained personnel required BMV, likely because appropriate initial steps of stimulation and drying were performed. In contrast, 12 of the 156 deliveries (7.7%) attended by personnel not trained in HBB required BMV.26 Similarly, HBB training resulted in increased use of stimulation (47% to 88%) and suctioning (15% to 22%), with decreased need for BMV (8.2% to 5.2%), in an study performed in hospital settings in Tanzania.27

PGCH_ch13_201-218.indd 208

8/20/18 8:41 AM

209 Chapter 13: The Role of Simulation in Health Education Globally: A Review of NRP and HBB

While these studies suggest that simulation training has the potential to positively affect performance in a clinical setting, additional studies are needed to define optimal strategies to translate content presented during training into sustained improvements in clinical performance.

Simulation-Based Training and Clinical Outcomes (T3-Level Science) Improved knowledge, skills acquisition, and clinical performance should ultimately lead to improved clinical outcomes. In 2013, two large implementation trials involving HBB were published. The first evaluated facility-based implementation of HBB in referral, regional, and district-level hospitals in Tanzania and included observations of 8,124 deliveries before and 78,500 deliveries after HBB training.27 The results indicated a reduction in early (,24 hour) neonatal mortality (relative risk [RR] 0.53; 95% CI, 0.43-0.65; P , 0.001) and rates of fresh stillbirth (RR 0.76; 95% CI, 0.64-0.90; P 5 0.001).27 A second study evaluated HBB implementation in district and urban hospitals, as well as rural primary health centers in India.28 The study evaluated 4,187 births before and 5,411 births after HBB training and found a reduction in stillbirth rate from 3.0% to 2.3% (odds ratio [OR] 0.76; 95% CI, 0.59-0.98) and reduction in fresh stillbirth rate from 1.7% to 0.9% (OR 0.54; 95% CI, 0.37-0.78), suggesting that newborns previously considered nonviable at birth may have been misclassified. However, this study did not identify a change in neonatal mortality rates after HBB. The Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) Global Network for Women’s and Children’s Health Research performed a multinational study in India (2 sites in Nagpur and Belgaum) and Kenya to evaluate the effect of facility-based HBB implementation on the perinatal mortality rate (sum of fresh stillbirths and early [,24 hour] neonatal deaths) among all national registry births of neonates weighing 1,500 g or more, whether they occurred in an HBB facility or not.29 A total of 70,704 births were included over a 12-month study period before and a 12-month study period after HBB training. The study compiled data from deliveries in and out of facility settings and concluded that there were no differences in perinatal mortality rates pre- and post-intervention. However, a post hoc analysis identified decreased mortality rates in neonates born weighing less than 2,500 g in both registry and HBB training facility births in Belgaum. Furthermore, the results showed that in the Kenyan facilities with HBB-trained personnel, the perinatal mortality rate decreased from 38.5 to 28.2 per 1,000 live births and the fresh stillbirth rate decreased from 25.7 to 16.4 per 1,000 live births (both significant at P , 0.05). These data suggest that simulation-based training has the potential to improve clinical outcomes, with evidence of decreased fresh stillbirth and early neonatal mortality. However, the NICHD study raises the bar by asking how HBB programs will affect neonatal mortality on a national level, including data from newborns who were not delivered in settings with HBB-trained health care professionals. These data support the impact of HBB but further highlight the challenge of reaching all neonates regardless of where they are born.

PGCH_ch13_201-218.indd 209

8/20/18 8:41 AM

210 Part 3: Educational Models in Global Health Settings

An Environmental Scan

Current Status of Educational Efforts Since its launch in 2010, HBB has trained more than 400,000 birth attendants, been translated into 26 languages, and been implemented in 80 countries.30,31 Key lessons have been learned in the 5 years following the release of HBB and were summarized in a document authored by the HBB Global Development Alliance in 2015, including a summary of published reports, peer-reviewed literature, and experiences with use.31 Importantly, there was a recognition that HBB training in and of itself was not sufficient to save lives, highlighting the need for sustainable quality improvement initiatives, systems for ongoing practice, and correct reprocessing of neonatal equipment.31 While simulation and its role as a mechanism for educational effectiveness remains at the foundation of HBB and was a key catalyst in its early progress, a clearer framework for improving neonatal survival emerged: the formula for survival would include the synergy between educational efficacy, resuscitation science, and local implementation.32,33 One significant challenge for health care workers after receiving neonatal resuscitation training, whether NRP or HBB, has been retention of resuscitation skills. Studies show that newborn health care professionals quickly lose skills, followed by knowledge, as time passes after training.34 A recent educational analysis performed as part of the NICHD study showed that an initial HBB training improved both knowledge and skills. This study presented surprising data that only 5% of actively practicing birth attendants (including physicians and nurses) were able to demonstrate effective BMV prior to HBB training.35 Similar to what was seen in other studies, the difference in pretraining knowledge and skills in doctors compared with nurses disappeared after training, and the proportion of health care workers who effectively ventilated the mannequin increased from 4% to 97%. After HBB training, daily BMV practice, equipment checks, and supportive supervision were emphasized. Birth attendants were again assessed just before refresher trainings held approximately 6.7 months after the initial training. While 99% continued to pass the knowledge test during this pre-refresher evaluation, the successful completion rate of OSCE B fell from 99% immediately after initial HBB training to 81%. The investigators found that birth attendants from tertiary facilities had 9-times higher risk of failing OSCE B at the pre-refresher time point, which they speculated may have been due to less daily practice secondary to busy schedules, understaffing, increased workload, or higher proportion of physicians in tertiary facilities leading to less frequent BMV practice. Qualitative reports suggested that physicians were less compliant with practicing BMV than nurses because they were “too busy” or “not in the delivery area.” Since the 5-year report, 2 large implementation studies have been published that identified the power of the simulation-based methodology of HBB coupled with quality improvement and ongoing practice to improve neonatal survival. The first study, performed in Tanzania, was a follow-up at the same site that had previously shown that a 1-day HBB workshop without any local ownership or

PGCH_ch13_201-218.indd 210

8/20/18 8:41 AM

211 Chapter 13: The Role of Simulation in Health Education Globally: A Review of NRP and HBB

implementation strategy failed to result in improved delivery room practices or clinical outcomes.25,36 The aim of the follow-up study was to determine if frequent, brief, on-site simulation training would affect delivery room practices and early (,24 hour) mortality. To implement the frequent on-site practices (or low-dose/ high-frequency practices), the neonatal simulator was placed in an easily accessible location on the labor ward and 3- to 5-minute practices were held at least weekly, in addition to repeated monthly training sessions of 40 minutes’ duration. The results of the study were a 40% reduction in early neonatal mortality (11.1 to 7.2 per 1,000 live births; P 5 0.04) in the year after implementation of low-dose/ high-frequency practice. Furthermore, the data suggested that more babies received appropriate suction and stimulation, resulting in less need for BMV. The objective of the second study, from Nepal, was to improve adherence to the HBB action plan and reduce perinatal mortality through the use of structured quality improvement, which included formation of quality improvement teams; development of quality improvement goals, objectives, and standards; standardization of HBB training; and implementation of weekly review meetings, daily skill checks, and routine self-evaluation checklists, as well as refresher trainings.37 After the intervention, use of suction and stimulation decreased by 87%, and the use of appropriate and timely BMV improved. Furthermore, the intrapartum stillbirth rate decreased from 9.0 to 3.2 per 1,000 deliveries and earlier than 24-hour mortality from 5.2 to 1.9 per 1,000 live births (Figure 13-2). A recent systematic literature review examined the acquisition and retention of neonatal resuscitation knowledge and skills using HBB, NRP, or other newborn resuscitation programs, such as the UK Newborn Life Support course. The review identified 45 articles, 31 of which evaluated acquisition of knowledge and skills and 19 that analyzed retention.38 Consistent with many of the studies already mentioned, the authors found that neonatal resuscitation training in low- and middle-income countries significantly improved health care professionals’ knowledge and skills. The review also highlighted that numerous studies have identified deterioration of knowledge and skills after training. While refresher courses may be a strategy to mitigate this, formal refresher training is not commonly included in newborn resuscitation training programs. Focus groups who participated in a qualitative analysis of HBB-trained providers in Tanzania identified that while HBB helped increased knowledge, skills, and confidence, supportive supervision and follow-up visits were critical for skill retention.39 Challenges to these practices included inadequate time for skills practice and high rates of health care worker turnover with trainees being transferred to other departments. More challenges exist in ensuring support for the HBB master trainers and facilitators who will be implementing an educational cascade, providing mentorship, and supporting the development of systems for ongoing practice while maintaining the quality of training and its oversight. The process of preparing others to teach or train should be rigorous, consistent, and evidence based, in close partnership with local health systems and leadership. A survey of HBB-trained health care professionals administered to elicit feedback for revi-

PGCH_ch13_201-218.indd 211

8/20/18 8:41 AM

Morality Rate in 1,000

QIC weekly review and reflection meeting

8.0

Intrapartum stillbirth rate Median for intrapartum stillbirth rate

HBB QIC training Refresher training

6.0

First-day neonatal mortality rate Median for firstday neonatal mortality rate

4.0

2.0

0

Jul 2012

Aug 2012

Sep 2012

Oct 2012

Nov 2012

Dec 2012

Jan 2013

Feb 2013

Mar 2013

Apr 2013

May 2013

Jun 2013

Jul 2013

Aug 2013

Sep 2013

Figure 13-2. The Run Chart. The run chart is used in Nepal to track intrapartum stillbirth rate and first-day neonatal mortality rate on a ­monthly basis. The run chart is annotated with the activities conducted during different times. Abbreviations: HBB, Helping Babies Breathe; QIC, quality improvement cycle; QIT, quality improvement team. Modified and reproduced with permission from KC A, Wrammert J, Clark RB, et al. Reducing perinatal mortality in Nepal using Helping Babies Breathe. Pediatrics. 2016;137(6):e20150117.

212

Review, Reflection workshop and QIT formed

Part 3: Educational Models in Global Health Settings

PGCH_ch13_201-218.indd 212

10.0

Daily bag-and-mask skill check, self-evaluation checklist after each delivery, Peer review after each resuscitation, Progress board, Daily debrief to QIT

Setting up HBB QIC standards

12.0

8/20/18 8:41 AM

213 Chapter 13: The Role of Simulation in Health Education Globally: A Review of NRP and HBB

sions identified that better support for HBB facilitators was needed. Suggestions to improve the quality of training included facilitating the first course with ­experienced trainers, improving ways to assess that learners have the required skills, and more instruction/practice on how to teach the course in facilitator training. These suggestions were incorporated into the content of “What the Facilitator Needs to Know and Do,”12 a separate page that provides advice on HBB implementation. Together with the emphasis on improving supports for facilitators, it is also important to keep HBB training learner centered, so that the training achieves the goals of acquiring, retaining, and eventually implementing the needed skills.40 Tailoring the training to different types of learners is important; past experience with simulation, cultural differences, and educational capacity of various locales need to be considered.41

Current Gaps in Knowledge While HBB has dramatically changed the global landscape of neonatal resuscitation, significant gaps in knowledge remain with respect to application of resuscitation education in resource-limited settings. Several of these issues have been acknowledged by the International Liaison Committee on Resuscitation (ILCOR) and are applicable to NRP as well. For example, incorporation of simulation-based training into NRP was innovative and forward-thinking; however, evidence to support this approach remains limited. More well-designed and well-powered clinical trials that evaluate the educational efficacy of simulation-based training are needed.6,41 The NRP Steering Committee used the GRADE system to systematically review the evidence for a number of knowledge gaps, including the frequency of resuscitation training or practices to retain skills.6 The studies exploring this theme exhibited low-quality evidence and showed no difference in patient outcomes but did show some advantages in psychomotor performance, knowledge, and confidence when trainings occurred every 6 months or more frequently.6 As a result, the seventh edition of NRP suggests that neonatal task training should be recurrent and considered more frequently than once per year. Beyond gaps in knowledge regarding the optimal timing and mode of refresher training and whether simulated delivery room experiences enhance retention of knowledge and competency, ILCOR emphasizes that optimal approaches to assessment of retention and competency and whether there are differences for high-opportunity and low-opportunity environments remain unknown.42–44 Similarly, a review of neonatal resuscitation in low-resource settings and the World Health Organization Guidelines on Basic Newborn Resuscitation recognized the following research gaps specific to low-resource settings42–44: frequency of training, retention of skills when used frequently and infrequently, effect of different training methodologies for improving skills for basic newborn resuscitation, effect of video recordings of the care provided to the newborn as a teaching and evaluation tool, and trainability and performance of different categories of health workers in conducting resuscitation.

PGCH_ch13_201-218.indd 213

8/20/18 8:41 AM

214 Part 3: Educational Models in Global Health Settings

Furthermore, a meta-analysis that analyzed whether standardized, formal neonatal resuscitation training programs in low- and middle-income countries reduced neonatal mortality and morbidity noted that the effect of such training on the outcomes of birth asphyxia and neurological development was uncertain.45

Current Best Practice: Helping Babies Breathe, 2nd Edition In fall 2016, the second edition of HBB was released, incorporating the most up-to-date ILCOR recommendations.12 The updated curriculum features impor­ tant changes in resuscitation science, educational effectiveness, and implementation, reflecting the greater understanding of the 3 components that contribute to the formula for survival. The simulation-based strategy emphasized in the first edition—namely, hands-on practice, paired learning, and feedback—continues to be strongly used. Specific to educational effectiveness and implementation, there is an expanded role for the facilitator to provide supportive supervision before, during, and after HBB trainings. Such supportive supervision is intended to aid in establishing ongoing systems of practice, refresher trainings, case reviews, and reviewing one’s actions after a resuscitation (debriefing). The practice exercises and OSCEs were revised to include 5 questions to encourage the learner to self-­ reflect on performance and to prompt the facilitator to give constructive feedback such that these skills-based evaluations can be used as summative and formative assessments. These changes were designed to make debriefing more learner-­ centered, so both the learner and facilitator could bring up important topics for discussion during debriefing, thereby making the learner address gaps in his or her own knowledge or performance40 and enabling debriefing to occur not only with master trainers and facilitators but also with peers. It is also suggested that debriefing occur after every birth in which the baby required help to breathe to facilitate ongoing learning. Furthermore, the facilitator is provided with resources to introduce simple concepts for steps to improve care (quality improvement).

Conclusion Simulation-based training has become an integral part of the implementation of neonatal resuscitation programs worldwide. While early studies suggest that simulation affects educational outcomes, skills performance, and, most importantly, clinical outcomes, numerous questions remain about how to optimize the effect of this educational strategy. These include defining the role of refresher training, ongoing practice, and mentoring, as well as the optimal approaches to ensuring quality in resuscitation education and care. The past decade has been notable for a new vision and effort in expanding resuscitation education programming globally as one means of meeting worldwide goals of reducing neonatal mortality. Numerous obstacles remain in advancing this vision, including limited resources and inadequate access to complex equipment needed for simulation, dependence on skilled educators familiar with simulation and debriefing, and acceptance of simulation as a successful teaching strategy and training as an appropriate time investment for health care professionals. The release of the

PGCH_ch13_201-218.indd 214

8/20/18 8:41 AM

215 Chapter 13: The Role of Simulation in Health Education Globally: A Review of NRP and HBB

second edition of HBB continues to emphasize the synergy of implementation, the educational efficacy of simulation-based training, and evidence-based resuscitation interventions as essential toward reducing neonatal mortality globally. More studies of the revised curriculum are warranted to determine the educational and clinical effect. Although much remains to be done, simulation-based training with HBB appears to be an educational paradigm that can garner acceptance globally and has the potential to bring knowledge, skills, and confidence to thousands of providers in low- and middle-income countries who will then save newborns in the coming years.

References 1. Mundell WC, Kennedy CC, Szostek JH, Cook DA. Simulation technology for resuscitation training: a systematic review and meta-analysis. Resuscitation. 2013;84(9):1174–1183 2. Halamek LP. Simulation and debriefing in neonatology 2016: mission incomplete. Semin Perinatol. 2016;40(7):489–493 3. Halamek LP, Kaegi DM, Gaba DM, et al. Time for a new paradigm in pediatric medical education: teaching neonatal resuscitation in a simulated delivery room environment. Pediatrics. 2000;106(4):e45 4. Kamath-Rayne BD, Berkelhamer SK, Kc A, Ersdal HL, Niermeyer S. Neonatal resuscitation in global health settings: an examination of the past to prepare for the future. Pediatr Res. 2017;82(2):194–200 5. Perlman JM, Wyllie J, Kattwinkel J, et al. Neonatal resuscitation: 2010 international consensus on cardiopulmonary resuscitation and emergency cardiovascular care science with treatment recommendations. Pediatrics. 2010;126(5):e1319–e1344 6. Wyllie J, Perlman JM, Kattwinkel J, et al. Part 7: neonatal resuscitation: 2015 international consensus on cardiopulmonary resuscitation and emergency cardiovascular care science with treatment recommendations. Resuscitation. 2015;95:e169–e201 7. Ades A, Lee HC. Update on simulation for the Neonatal Resuscitation Program. Semin Perinatol. 2016;40(7):447–454 8. Patel A, Khatib M, Kurhe K, Bhargava S, Bang A. Impact of neonatal resuscitation trainings on neonatal and perinatal mortality: a systematic review and meta-analysis. BMJ Paediatrics Open. 2017;1:e000183 9. Kamath-Rayne BD, Griffin JB, Moran K, et al. Resuscitation and obstetrical care to reduce intrapartum-related neonatal deaths: a MANDATE study. Matern Child Health J. 2015;19(8): 1853–1863 10. Lee AC, Cousens S, Wall SN, et al. Neonatal resuscitation and immediate newborn assessment and stimulation for the prevention of neonatal deaths: a systematic review, meta-analysis and Delphi estimation of mortality effect. BMC Public Health. 2011;11(Suppl 3):S12 11. Niermeyer S, Keenan W, Little G, Singhal N. Helping Babies Breathe: Facilitator Flip Chart. Helping Babies Survive 2010. http://internationalresources.aap.org/Resource/ ShowFile?documentName5hbb_flipchart_english.pdf. Accessed April 23, 2018 12. Niermeyer S, Kamath-Rayne B, Keenan W, Little G, Singhal N, Visick M. Helping Babies Breathe: Facilitator Flip Chart: What the Facilitator Needs to Know and Do. Helping Babies Survive 2016; 2nd ed. http://internationalresources.aap.org/Resource/ShowFile?documentName5HBB_ Flipbook_Second_Edition_20-00371_Rev_E.pdf. Accessed April 23, 2018 13. Berkelhamer SK, Kamath-Rayne BD, Niermeyer S. Neonatal resuscitation in low-resource settings. Clin Perinatol. 2016;43(3):573–591 14. Niermeyer S. From the Neonatal Resuscitation Program to Helping Babies Breathe: global impact of educational programs in neonatal resuscitation. Semin Fetal Neonatal Med. 2015;20(5):300–308

PGCH_ch13_201-218.indd 215

8/20/18 8:41 AM

216 Part 3: Educational Models in Global Health Settings

15. Seto TL, Tabangin ME, Taylor KK, Josyula S, Vasquez JC, Kamath-Rayne BD. Breaking down the objective structured clinical examination: an evaluation of the Helping Babies Breathe OSCEs. Simul Healthc. 2017;12(4):226–232 16. Sawyer T, White M, Zaveri P, et al. Learn, see, practice, prove, do, maintain: an evidence-based pedagogical framework for procedural skill training in medicine. Acad Med. 2015;90(8):1025–1033 17. McGaghie WC, Draycott TJ, Dunn WF, Lopez CM, Stefanidis D. Evaluating the impact of simulation on translational patient outcomes. Simul Healthc. 2011;6(Suppl):S42–S47 18. Rakshasbhuvankar AA, Patole SK. Benefits of simulation based training for neonatal resuscitation education: a systematic review. Resuscitation. 2014;85(10):1320–1323 19. World Health Organization, United Nations Children’s Fund. Every Newborn: An Action Plan to End Preventable Deaths. Geneva, Switzerland: World Health Organization; 2014. https://www. healthynewbornnetwork.org/hnn-content/uploads/Every_Newborn_Action_Plan-ENGLISH_ updated_July2014.pdf. Accessed June 22, 2018 20. Singhal N, Lockyer J, Fidler H, et al. Helping Babies Breathe: global neonatal resuscitation program development and formative educational evaluation. Resuscitation. 2012;83(1):90–96 21. Hoban R, Bucher S, Neuman I, Chen M, Tesfaye N, Spector JM. ‘Helping babies breathe’ training in sub-saharan Africa: educational impact and learner impressions. J Trop Pediatr. 2013;59(3): 180–186 22. Musafili A, Essen B, Baribwira C, Rukundo A, Persson LA. Evaluating Helping Babies Breathe: training for healthcare workers at hospitals in Rwanda. Acta Paediatr. 2013;102(1):e34–e38 23. Seto TL, Tabangin ME, Josyula S, Taylor KK, Vasquez JC, Kamath-Rayne BD. Educational outcomes of Helping Babies Breathe training at a community hospital in Honduras. Perspect Med Educ. 2015;4(5):225–232 24. Arabi AM, Ibrahim SA, Ahmed SE, et al. Skills retention in Sudanese village midwives 1 year following Helping Babies Breathe training. Arch Dis Child. 2016;101(5):439–442 25. Ersdal HL, Vossius C, Bayo E, et al. A one-day “Helping Babies Breathe” course improves simulated performance but not clinical management of neonates. Resuscitation. 2013;84(10):1422–1427 26. Kamath-Rayne BD, Josyula S, Rule ARL, Vasquez JC. Improvements in the delivery of resuscitation and newborn care after Helping Babies Breathe training. J Perinatol. 2017;37(10):1153–1160 27. Msemo G, Massawe A, Mmbando D, et al. Newborn mortality and fresh stillbirth rates in Tanzania after Helping Babies Breathe training. Pediatrics. 2013;131(2):e353–e360 28. Goudar SS, Somannavar MS, Clark R, et al. Stillbirth and newborn mortality in India after Helping Babies Breathe training. Pediatrics. 2013;131(2):e344–e352 29. Bellad RM, Bang A, Carlo WA, et al. A pre-post study of a multi-country scale up of resuscitation training of facility birth attendants: does Helping Babies Breathe training save lives? BMC Pregnancy Childbirth. 2016;16(1):222 30. American Academy of Pediatrics. Helping Babies Survive. https://www.aap.org/en-us/advocacyand-policy/aap-health-initiatives/helping-babies-survive/Pages/default.aspx. Accessed June 22, 2018 31. Helping Babies Breathe Global Development Alliance. Helping Babies Breathe: Lessons Learned Guiding the Way Forward. Kak LP, Johnson J, McPherson R, Keenan W, Schoen E, eds. 2015. https://www.aap.org/en-us/Documents/hbb_report_2010-2015.pdf. Accessed June 22, 2018 32. Søreide E, Morrison L, Hillman K, et al. The formula for survival in resuscitation. Resuscitation. 2013;84(11):1487–1493 33. Ersdal HL, Singhal N, Msemo G, et al. Successful implementation of Helping Babies Survive and Helping Mothers Survive programs—an Utstein formula for newborn and maternal survival. PLoS One. 2017;12(6):e0178073 34. Skidmore M, Urquhart H. Retention of skills in neonatal resuscitation. Paediatr Child Health. 2001;6(1):31–35 35. Bang A, Patel A, Bellad R, et al. Helping Babies Breathe (HBB) training: what happens to knowledge and skills over time? BMC Pregnancy Childbirth. 2016;16(1):364 36. Mduma E, Ersdal H, Svensen E, Kidanto H, Auestad B, Perlman J. Frequent brief on-site simulation training and reduction in 24-h neonatal mortality—an educational intervention study. Resuscitation. 2015;93:1–7

PGCH_ch13_201-218.indd 216

8/20/18 8:41 AM

217 Chapter 13: The Role of Simulation in Health Education Globally: A Review of NRP and HBB

37. KC A, Wrammert J, Clark RB, et al. Reducing perinatal mortality in Nepal using Helping Babies Breathe. Pediatrics. 2016;137(6):e20150117 38. Reisman J, Arlington L, Jensen L, Louis H, Suarez-Rebling D, Nelson BD. Newborn resuscitation training in resource-limited settings: a systematic literature review. Pediatrics. 2016;138(2):e20154490 39. Isangula KG, Kassick ME, Kairuki AK, et al. Provider experiences with the large-scale ‘Helping Babies Breathe’ training programme in Tanzania. Paediatr Int Child Health. 2018;38(1):46–52 40. Cheng A, Morse KJ, Rudolph J, Arab AA, Runnacles J, Eppich W. Learner-centered debriefing for health care simulation education: lessons for faculty development. Simul Healthc. 2016;11(1):32–40 41. Rule ARL, Tabangin M, Cheruiyot D, Mueri P, Kamath-Rayne BD. The call and the challenge of pediatric resuscitation and simulation research in low-resource settings. Simul Healthc. 2017;12(6):402–406 42. Ersdal HL, Singhal N. Resuscitation in resource-limited settings. Semin Fetal Neonatal Med. 2013;18(6):373–378 43. Perlman J, Kattwinkel J, Wyllie J, Guinsburg R, Velaphi S; Nalini Singhal for the Neonatal ILCOR Task Force Group. Neonatal resuscitation: in pursuit of gaps in knowledge. Resuscitation. 2012;83(5):545–550 44. World Health Organization. Guidelines on Basic Newborn Resuscitation. Geneva, Switzerland; World Health Organization; 2012. http://apps.who.int/iris/ bitstream/10665/75157/1/9789241503693_eng.pdf. Accessed June 22, 2018 45. Pammi M, Dempsey EM, Ryan CA, Barrington KJ. Newborn resuscitation training programmes reduce early neonatal mortality. Neonatology. 2016;110(3):210–224

PGCH_ch13_201-218.indd 217

8/20/18 8:41 AM

PGCH_ch13_201-218.indd 218

8/20/18 8:41 AM

219

CHAPTER 14

Child Development: The Next Global Health Frontier Mei Elansary, MD, MPhil Elizabeth Peacock-Chambers, MD, MS Barry S. Zuckerman, MD, FAAP

abstract Recent improvements in child health have led to substantial decreases in child mortality globally.1 While progress is still needed, especially in regions afflicted by conflict and political instability,2 the next step is to promote young children’s development and early learning so they can remain healthy, take advantage of growing educational opportunities, and contribute to their communities’ economic growth. Every year, approximately 249 million children, mainly from low- and middle-­ income countries, fail to reach their developmental potential in the context of poverty and related health, nutrition, and social factors.3 Recessions and climate change additionally contribute to loss of developmental potential globally.4–7 While principles of early childhood development are universal, a global perspective must consider exposure to extreme poverty and high prevalence of infectious diseases, cultural context, and availability and type of resources. This chapter will describe biological and social factors that influence brain development and early learning and resilience, their cultural context, and examples of successful child development interventions globally. We also provide recommendations to rapidly accelerate the promotion of early childhood development globally with key strategies, including an emphasis on universal prevention programs rather than universal screening, multigenerational models that emphasize universal support for parents and targeted support for high-risk populations, integration of child development programs into child health and nutrition efforts, and use of technology.

PGCH_ch14_219-252.indd 219

8/20/18 8:09 AM

220 Part 3: Educational Models in Global Health Settings

OPERATING PRINCIPLES INCLUDED (SEE PART 1.) 1.  Persistence (genuine advocacy) 2.  Partnership (respectful, bidirectional modalities) Competencies Addressed: E1, E2, E3, E4 See Chapter 7, Global Health Education Faculty Competencies.

Key References Lancet Early Childhood Development Series. Advancing early childhood development: from science to scale. Lancet. http://www.thelancet.com/series/ECD2016. Published October 4, 2016. Accessed June 22, 2018 Dua T, Tomlinson M, Tablante E, et al. Global research priorities to accelerate early child development in the sustainable development era. Lancet Glob Health. 2016;4(12): e887–e889 Sharma R, Gaffey MF, Alderman H, et al. Prioritizing research for integrated implementation of early childhood development and maternal, newborn, child and adolescent health and nutrition platforms. J Glob Health. 2017;7(1):011002

Teaching Points 1 Traditional models of disabilities include genetic contributions, malnutrition, metabolic disorders, perinatal hypoxia, preterm birth, and infections. New models of disability have expanded to include the social environment—­ children’s experiences that shape less severe but more frequent perturbations in the brain that interfere with learning and adaptive behavior.

2 Negative or stressful social experiences influence brain function through the action of cortisol, especially on the hypothalamus and amygdala, adversely affecting learning, behavior, and resilience, leading to lower educational attainment.

3 The interrelated threats to health and development in early childhood are rooted in poverty and early adverse experiences.

4 Infectious diseases such as HIV, malaria, and diarrheal diseases may affect development through direct effects on the brain or indirectly through malnutrition and an inability to elicit adequate parental stimulation.

5 Exposure to negative risk factors in early childhood (undernutrition, low

family income, inadequate parenting skills, parental mental health problems, exposure to violence, environmental toxins) do not inevitably result in harm.

6 Protective factors in early childhood such as strong parent-child attachment, parental stimulation, and maternal education attenuate the adverse consequences of toxic stress.

7 Understanding culture is critical for working effectively with families.

Culture is not homogenous or static, and families with a shared ethnicity should not be assumed to have homogeneous beliefs about parenting.

PGCH_ch14_219-252.indd 220

8/20/18 8:09 AM

221 Chapter 14: Child Development: The Next Global Health Frontier

History/Context

Prevalence of Developmental Delay and Disability Children unable to reach their developmental potential can have their conditions categorized as follows: high-frequency, low-morbidity conditions; low-frequency, high-morbidity conditions; and moderate to severe disability. Estimates of child disability in low- and middle-income countries vary depending on what definition of disability is used. Narrow, medical definitions are likely to provide lower estimates than broader ones that consider social barriers to functioning and participation in society. Despite the lack of conclusive information on the prevalence of developmental delay and disability, given that 10% to 20% of children in high-income countries experience developmental difficulties,8,9 we can envision a greater burden in low- and middle-income countries given increased exposure to risk factors.10 By one widely used global estimate, approximately 93 million children, or 1 in 20 of those aged 14 years or younger, live with a moderate or severe disability of some kind.11 The rates of overall disability published in peer-reviewed journals have been inconsistent, ranging from 0.4% to 12.7% in cross-sectional studies,12 with hearing impairment reported as the most common disability (nearly 20% prevalence in some studies).12 The Ten Questions screening tool is the most widely used tool for disability estimates.10,12 Future efforts to understand the burden of disabilities in low- and middle-income countries should focus on international standards and definitions as well as population-based methods of detection. This chapter will describe biological and social factors that influence brain development and early learning and resilience, their cultural context, and strategies needed to promote child development for all children.

Brain Development and Perturbations A traditional medical model of disabilities includes genetic contributions (eg, Down syndrome, Angelman syndrome, fragile X syndrome), malnutrition, metabolic disorders, perinatal hypoxia, preterm birth, and infections. This model is expanded to include the social environment—children’s experiences that shape less-severe but more frequent perturbations in the brain that interfere with learning and adaptive behavior.13,14 The social environment includes maternal and caregiver responsiveness as well as reciprocal social and verbal interactions, which form the basis of attachment (see Appendix C) (the ability to form and maintain relationships), early learning, and self-regulation in infancy.15,16 This begins the trajectory to strong executive function, enjoyment of learning, and social functioning in adulthood.17,18 Children are born with all their neurons already formed, but the connections between the neurons are not established until after birth and peak by 3 years of age. Synapses are lost through pruning when they are not stimulated by specific experiences. The synapses that remain have been created and stimulated by the child’s specific experience and form the basis of the brain-based skills used and needed for future success in that society; for example, fine motor or visual motor for weaving versus language skills needed for high verbal and written communication. The changing nature of the human brain is best illustrated by the greater

PGCH_ch14_219-252.indd 221

8/20/18 8:09 AM

222 Part 3: Educational Models in Global Health Settings

ease to learn and retain 2 languages, including grammar and accent, in early childhood compared with learning a second language later in grade school, when learning occurs by memorizing words and rules of language.19 For young children, language is “caught, not taught” through connections between auditory, speech, and cognitive processing areas of the brain. This is supported by magnetic resonance imaging studies showing how different parts of the brain light up with each of 2 different languages learned years apart, as opposed to the same place in the brain when both languages are learned early in childhood.20 Negative or stressful social experiences influence brain function through the action of cortisol, especially on the hypothalamus and amygdala, adversely affecting learning, behavior, and resilience, leading to lower educational attainment.21 The outpouring of cortisol due to dysregulation of the hypothalamic-pituitary-­ adrenal axis also adversely effects cardiovascular events and the immune system.22 The stress-altering effect on biological systems extends beyond childhood learning and behavior into adult health. For example, excessive social stress in early childhood increases lifetime risk of major illnesses, including depression and heart disease.23–25 The neurodevelopmental effects of adverse experiences have only been studied in high-income countries but are likely to also occur in children living in low- and middle-income settings and provide a strong evidence base for the urgency of early intervention programs for families globally.

Risk Factors The interrelated threats to health and development in early childhood are rooted in poverty and early adverse experiences. While risks have been routinely categorized as biological versus psychosocial,3,26 the transactional nature (eg, children’s temperament versus parental factors such as depression) has been increasingly recognized.27 For example, in the face of inadequate food supply, children with demanding temperamental characteristics are protected from malnutrition because they are difficult to ignore compared with children with easygoing temperaments.28 Similarly, malnourished children experience worse outcomes following refeeding if the mothers are depressed compared with those of nondepressed mothers.29 Risks often coexist, resulting in double jeopardy—poor children who have multiple risks suffer greater adverse consequences than their more well-to-do peers.30 For example, a 3-lb (1.36-kg) newborn of a well-to-do family will have significantly better outcome than that same 3-lb (1.36-kg) newborn born to a low-income family.30 Another scenario illustrating the transactional process between poverty and biological risk is the case of neonates and infants who are small for gestational age (SGA), who are more commonly born to poor mothers. An SGA newborn appears fragile, lethargic, and easily irritable, leading the mother to feel lack of efficacy interacting with the newborn, resulting in less interaction and leading the mother to feel increasingly inadequate and confused at her inability to elicit clear and vigorous responses from her baby. Consequently, the mother may feel hopeless and depressed, leading to even less stimulation for her baby.8 These sequential transactions lead to poor outcomes downstream for the mother (depression) and

PGCH_ch14_219-252.indd 222

8/20/18 8:09 AM

223 Chapter 14: Child Development: The Next Global Health Frontier

the newborn (poorer development). Negative outcomes for the newborn may have been avoided with upstream interventions at selected touchpoints; for example, nutrition provided prenatally and postnatal education and support for interacting with newborns with poor responsiveness. Any one intervention without the others or those that are poorly timed may not achieve optimal effect. This type of interactive life cycle approach underlies the guide by Ertem and Weitzman31 for low- and middle-income settings and is based on 4 key concepts: risk and protective factors coexist through the life span; factors that place a child’s survival at risk are also risks for development; risks often occur together, and their eventual effect may depend on the total number, duration, and severity of risk factors as well as presence of protective factors32; and risks affect development through complex pathways that challenge narrow classifications such as biological or psychosocial31 (Figure 14-1). While infectious diseases and inadequate nutrition have featured prominently in the global health agenda as root causes of childhood morbidity and mortality, these issues also adversely affect early child

Ne xt

Age-Specific Risks

ion rat ne e G

Preconceptional • Unwanted Pregnancy • Inadequate Child Spacing • Adolescent Pregnancy • Consanguinity

ng Life-Lo Risks Adolescence • Family/Peer/School Problems • DevelopmentalBehavioral Problems • Substance Abuse • Early Sexual Activity • Risk-Taking Behavior

• Problems in physical/mental health of child/family. • Deficiencies in psychosocial/educational environment. • Exposure to substances/toxins. • Exposure to violence/abuse/ neglect.

School Age • Family/Peer/School Problems • Inadequacies of Schools/Teachers • Developmental-Behavioral Problems • Risk-Taking Behavior

Prenatal/Perinatal • Inadequate Prenatal Care • High-risk Pregnancy, High-risk Newborn • Inadequate Adaptation to Pregnancy or Newborn • Perinatal Maternal Mortality

Infancy/Early Childhood • Inadequacies in Nurturing and Stimulating Qualities of Caregiving Environment • Developmental-Behavioral Problems

Figure 14-1. A Life-cycle Approach to Developmental Risks and Protective Factors Reproduced with permission from Ertem IO, Weitzman CC. Childhood development. In: Rudolph CD, Rudolph AM, Lister G, First LR, Gershon AA, eds. Rudolph's Pediatrics. 22nd ed. New York, NY: McGraw-Hill; 2011:36.

PGCH_ch14_219-252.indd 223

8/20/18 8:09 AM

224 Part 3: Educational Models in Global Health Settings

development in concert with inadequate psychosocial stimulation (see Appendix C) and learning experiences, maternal depression, and exposure to violence, intentional trauma, and environmental toxins. Neonatal risk factors including unskilled delivery, preterm birth, and birth asphyxia contribute to disability if the neonate survives.33–35 Parenting factors that promote children’s developmental outcomes include maternal education and family support. With the life cycle approach in mind, the remainder of this section on risk factors reviews what is known about infections, inadequate maternal and child nutrition, income, inadequate psychosocial stimulation (parenting lacking the appropriate skills and knowledge), maternal mental health (depression), exposure to violence, and environmental toxins. Information about the interrelationships among risks factors is provided when available, highlighting the importance of integration across health, nutrition, and child development services.

Infections Infectious diseases are widespread among young children in low- and middle-­ income countries and may affect development through direct effects on the brain or indirectly through malnutrition and an inability to elicit adequate parental stimulation. Our review focuses on the effects of HIV, malaria, and diarrheal diseases on child development.

HIV

HIV infection affects cognitive development. As of 2014, it is estimated that 2.6 million children and teens younger than 15 years are living with HIV, with 88% of these children and teens residing in sub-Saharan Africa.36 Despite tremendous advances in HIV prevention and care for children, there remain significant disparities between children and adults with HIV with regard to diagnosis, treatment, and mortality.36 HIV infection results in lower motor and cognitive development scores relative to noninfected children in low- and middle-income countries.6,37 The causal pathways may be a direct result of the HIV virus itself, antiretroviral therapies, and/or parental and environmental risk factors. Indeed, HIV infection exemplifies the cumulative influence of biological and psychosocial risk factors: associated illnesses, poor nutritional status, and adverse living conditions, including caregiver stress, illness, and, in many cases, death. The cumulative impact of these factors has long-term effects on children’s emotional and behavioral health.38 There is also need for more assessment of the effect of early antiretroviral treatment (ART) on child development in low- and middle-income settings. Studies in the United States show that highly active retroviral therapy has led to reduced rates of progressive HIV encephalopathy and some benefits to development.39,40 Among the limited literature in low- and middle-income countries, one study in the Democratic Republic of the Congo demonstrated benefits to cognitive and motor development after 1 year of treatment, with younger children benefiting more from treatment.41 Another South African study found that infants receiving early ART (,3 months old) had better short-term neurodevelopmental outcomes

PGCH_ch14_219-252.indd 224

8/20/18 8:09 AM

225 Chapter 14: Child Development: The Next Global Health Frontier

than infants for whom treatment is deferred.42 Overall, due to the complex nature of the developing brain and variations in access to ART, there is an urgent need to better understand the trajectory of neurodevelopment among children infected with HIV, especially regarding the timing of ART, in resource-constrained settings. The needs of HIV-exposed but uninfected children, referred to here as HIV-­ affected children, are also important due to the effect of parental disease on the child’s environment. The circumstances, behaviors, and social experiences that increase the risk of adults to HIV infection, such as minority status, migration, sexual behavior, and drug use, are independently associated with developmental difficulties for children who depend on these adult caregivers.43–45 As prevention of mother-to-child transmission reduces the number of HIV-positive children, it becomes important to understand the developmental needs of children exposed to HIV and to ART in utero, as well as understanding the effects of HIV in any family member on the functioning of the whole family. There is limited evidence on cognitive and motor deficits in HIV-affected ­children in low- and middle-income countries, with varying findings according to the age and outcome measured (eg, IQ, language, motor development).6,37,46–48 Maternal HIV immune activation may influence the developing fetal brain, as might exposure to antiretroviral therapy.49 Family factors are also important. Maternal depression in HIV infection is high, especially if the diagnosis is newly identified as part of prenatal testing50; maternal depression is associated with well-documented adverse developmental and behavioral consequences. HIV-­ affected children also suffer from increased exposure to violence51 and a 3-fold higher level of abuse.52 Studies in sub-Saharan Africa have identified child abuse as correlated with future HIV infection.53,54 Parental HIV is associated with child psychological distress, including depression, anxiety, and posttraumatic stress.­55–59 Children orphaned by HIV show increased rates of depression and posttraumatic stress compared with children who are not orphaned, as well as with children whose parents died of causes other than AIDS-related illnesses or violence.57,59,60 HIV-affected children, therefore, face multifactorial and complex risks to their development.

Malaria

Malaria is a serious cause of death and disability among children in low- and middle-income countries. In regions with high transmission of malaria, children younger than 5 years are particularly susceptible to infection, illness, and death.61 Cerebral malaria causes neurocognitive impairment as a result of direct brain damage. The consequences of cerebral malaria in children lead to long-term deficits in cognitive functions, with the most common deficits being inattention, memory, and visual skills.62 The degree and duration of developmental impairment have been associated with increased severity of disease.63 Malaria infection can indirectly affect cognition through nutrition, school attendance, or psychosocial development.64 Unfortunately, most studies on malaria and child development have been on school-aged children, despite the fact that children younger

PGCH_ch14_219-252.indd 225

8/20/18 8:09 AM

226 Part 3: Educational Models in Global Health Settings

than 5 years are predisposed to more serious infections and may experience worse cognitive effects.26

Diarrheal Diseases

Approximately 2 billion people are infected with soil-transmitted helminths worldwide,65 and infected children are physically, nutritionally, and cognitively impaired. More than 270 million preschool-aged children and more than 600 million school-aged children live in areas where these parasites are intensively transmitted.65 Children in low-, middle-, and upper-middle–income countries are at greater risk for increased episodes of diarrhea due primarily to lack of clean drinking water and sanitation.65 Enteropathy due to ingested fecal bacteria, while not necessarily presenting with diarrhea, leads to protein loss in the gut, resulting in undernutrition66–69 and resultant effects on development. Diarrhea leads to decreased growth and activity. Associations between diarrhea in early childhood and later school performance may occur through the same pathways that cause stunting.6,70 A multi-country analysis over a 20-year period found that each diarrheal episode and each day of diarrhea before 24 months of age contributes to stunting, and diarrhea prevalence is estimated to account for 20% of stunting prevalence.71 Even with control of confounding variables, associations remain between the number of diarrheal episodes before age 2 years and cognitive performance, including late school entry72 and deficits in semantic fluency and verbal learning.73 In contrast, a more recent meta-analysis of data showed controlling for length for age at age 2 years did not find an overall effect of diarrhea prevalence rates before age 2 on subsequent cognitive scores.70 Thus, while diarrhea prevalence alone may not be independently associated with poorer cognitive performance, its contribution to childhood stunting makes it an important consideration for global childhood development.

Inadequate Nutrition Undernutrition is the result of complex interactions of social, economic, and political factors and is inextricably linked with cognitive and social development in early childhood. A recurrent and integral theme in determinants of optimal growth and development is the bidirectionality of biological and psychosocial risk factors. For example, maternal education is associated with improved child care practices related to health and nutrition, reduced odds of stunting, and better ability to access and benefit from interventions.6,71,74–76 Women with short stature are at risk of complications in delivery, while poor nutritional status during pregnancy is associated with poor fetal growth.74 It is estimated that 32 million babies are born SGA, representing 27% of births in lowand middle-income countries.74 Neonates who are SGA are at risk of stunting in the first 2 years after birth.74 In 2011, 165 million children younger than 5 years were stunted (height-for-age z score of $–2) on the basis of World Health Organization (WHO) child growth standards, with the highest prevalence in East Africa (42%) and West Africa and South-Central Asia (36%).74 Both birth size and stunting are associated with poor cognitive outcomes.6,74 Moreover, linear growth in

PGCH_ch14_219-252.indd 226

8/20/18 8:09 AM

227 Chapter 14: Child Development: The Next Global Health Frontier

the first 2 years after birth is a stronger predictor of early and later childhood cognitive ability as compared with growth after 2 years, underscoring the early sensitive period of brain development.77 Diarrhea is the most important infectious disease determinant of stunting of linear growth.58,62 Supplementation of specific nutrients in a child’s diet, including iron, iodine, zinc, and fatty acids, has also been studied for its positive effects on cognitive and language development.6,74 More research is needed to understand whether supplementation with multiple micronutrients is more effective than iron supplementation alone for early childhood development.6 The importance of nutrition to early childhood development has led to efforts to integrate child development services into nutrition supplementation.74

Income Family income can affect children’s development through a variety of mechanisms. First, lack of adequate nutrition and other basic needs, such as stable and safe housing, clean water, and sanitary conditions, can result in chronic and recurrent illness, thereby negatively affecting development as mentioned previously. In addition, low income can lead to stress, hopelessness, and depression related to insecurity and worry about obtaining basic needs daily. Scarcity, defined as significant lack of basic needs, is also thought to interfere with the capacity for parents to engage constructively with their children.78 Scarcity also affects one’s thinking, leading to poor decision-making that can further exacerbate the effect of limited resources. As an example, when money runs out before the crop comes in or even a small paycheck, individuals may take a loan at high interest rates that leads to debt and its downstream negative consequences. Family income in lowand middle-income countries varies, with lower income having more of an adverse effect on development compared with higher income, with different aspects of development more sensitive to low income than others.79 In Madagascar, receptive language and executive function (sustained attention and working memory) were most sensitive to low family income, showing the greatest gap between high and low income. Visual-spatial processing and reasoning were less sensitive to income gaps.80 Important differences in child development by income have also been observed in studies conducted in 5 Latin American countries.81 Data suggest that the difference in scores between the richest and poorest families remained, but did not widen, beyond those differences already present at 3 years of age.79

Parenting Lacking Appropriate Skills and Knowledge Experience, especially caregiving behaviors beginning at birth, acts on the brain and influences different trajectories for learning and behavior. The concept of nurturing care, defined as a stable environment that is sensitive to a child’s health and nutritional needs with protection from threats and supportive of interactions that are responsive and developmentally stimulating, underscores the importance of early relationships.82 Research from high-income countries has established 3 aspects of parenting that are related to early childhood development: cognitive

PGCH_ch14_219-252.indd 227

8/20/18 8:09 AM

228 Part 3: Educational Models in Global Health Settings

stimulation, caregiver sensitivity and responsiveness, and caregiver affect. These factors are influenced by contextual factors, including cultural values and practices. Although these parenting dimensions affect children similarly across low-, middle-, upper-middle–, and high-income countries,83,84 their effect depends on the skills and attributes needed for functioning in any particular society (eg, weaving, literacy, numeracy). Noncognitive skills, especially executive function, which includes the ability to shift attention, retain information, and control impulses, are important skills to function in most societies. Similar to cognitive skills, they are affected by parenting practices and adversely affected when parenting is disrupted by the effect of unpredictable environments and sustained stress.79 Globally, the lack of early learning opportunities for cognitive and noncognitive skills emanating from appropriate caregiver-child interactions contributes to loss of developmental and economic potential,4 especially in societies where learning and education are needed for financial independence. Providing young children with cognitively stimulating activities and exposing them to learning opportunities significantly enriches cognitive and social-­ emotional competence.4,69,85 Intervention studies have demonstrated a sustained effect of early stimulation on adult functioning in cognitive as well as noncognitive domains. For example, a study in Jamaica among children aged 9 to 24 months whose growth was atypically slow demonstrated that psychosocial stimulation, consisting of weekly play sessions to improve mother-child interaction, improved adult educational attainment and psychological functioning and reduced violent behavior in participants at age 22 years.26 It is estimated that only 10% to 41% of parents in low- and middle-income countries provide cognitively stimulating materials to their child, and only 11% to 33% actively involve their children in cognitively stimulating activities.4 While country-level indicators for psychosocial stimulation do not exist and parenting differs in different cultures, the HOME (Home Observation for Measurement of the Environment; a measure of positive stimulation in the home environment)83,86 demonstrates consistent relations between exposure to stimulation and parental responsiveness and children’s adaptive functioning.83 An abbreviated version of the inventory, the family care indicators, has been validated in Africa and South Asia87,88 and used in at least 28 low-, middle-, and upper-middle–income countries.89 In studies using the family care indicators, only 25% of mothers reported reading to their children in the past 3 days, 25% reported singing songs, and 35% told stories.89 Countries with a higher Human Development Index (see Appendix C), an index of life expectancy, education, and gross domestic product, show more stimulating and supporting caregiving practices.89 Studies from Chile, Columbia, India, and South Africa have found maternal sensitivity to be associated with more secure infant attachment,90–92 while higher levels of maternal responsivity are associated with fewer behavior problems in preschool-aged children,93–95 particularly among high-risk dyads.

Maternal Mental Health (Depression) Maternal depressive symptoms interfere with maternal responsivity and other aspects of parenting and have a negative effect on early child development across different cultures and socioeconomic groups.96 Prevalence rates for maternal

PGCH_ch14_219-252.indd 228

8/20/18 8:09 AM

229 Chapter 14: Child Development: The Next Global Health Frontier

depressive symptoms across low-, middle-, upper-middle–, and high-income countries range from 3% to 60%,4 with higher rates reported in women in lowand middle-income countries compared with women in high-income countries.97 A meta-analysis of common mental disorders, including depression, anxiety, adjustment, and somatic disorders, in low- and middle-income countries reported values of 15% during pregnancy and 20% postpartum, with substantial variability among countries.98 Risk factors for maternal depression, such as poverty, low education, high stress, and poor social support,80 are also risk factors for poor child development.6 Research from low- and middle-income countries, consistent with high-income countries, demonstrates consistent associations between postnatal depression and a range of cognitive outcomes, including infant ability to learn, achievement of developmental milestones, and language and general cognitive development.99–102 Persistence of postnatal depression seems to have even more detrimental effects in relation to cognitive development.102–104 Studies demonstrating the link between maternal depression and poor child growth and development illustrate the bidirectionality of psychosocial and biological risk factors. Emerging evidences demonstrates that poor perinatal maternal mental health, especially in women at a socioeconomic disadvantage, is associated with poor infant growth. Perinatal depression is associated with underweight and stunting in infancy,73,105–107 with effects persisting up to school age of 5 years.97,105 Children of mothers with chronic depression (multiple episodes) are at greatest risk of stunting or being underweight in low- and middle-income countries.108,109 As a partial explanation for these long-term consequences on the health of the child, postnatal depression in mothers in low- and middle-income countries is associated with high rates of diarrheal disease in children, a major cause of failure to thrive in these countries.110

Exposure to Violence It is estimated that 30 million children younger than 5 years have been exposed to societal violence.6 Domestic violence and child abuse occur across countries in all income groups. In the United States, the Adverse Childhood Experiences (ACE) Study indicates that witnessing violence in the home alters brain development beyond the direct effects of being a victim, impairs learning, and is associated with health and mental health problems in adults.25 Domestic violence is common worldwide but is likely most extensive in low- and middle-income countries because of lack of prohibitions.111 It is unknown whether domestic violence that is common in a culture has the same adverse effects in countries where there are prohibitions. It is likely that the adverse effect is associated with the frequency and severity of domestic violence and whether it occurs with controlling behaviors. In addition to violence in the home, violence at the societal and community level is especially prevalent in low- and middle-income countries.2 Young children who are exposed to violence have insecure attachments, increased risk of behavior problems, less prosocial behaviors, and increased aggressive behavior.6 These may be the result of disruptions to family structure and functions112 that undermine child-rearing113 and disrupt the child’s ability to regulate emotions.114

PGCH_ch14_219-252.indd 229

8/20/18 8:09 AM

230 Part 3: Educational Models in Global Health Settings

Most studies examining the effect of direct exposure to armed conflict, including refugee status and loss of family members, involve children older than 5 years.112,115,116 Studies from Eritrea and Bosnia have shown that providing structured educational experiences to war-exposed refugee children117 or parenting training to their caregives118 can improve children’s cognitive and social-­ emotional competence. There is a pressing need for intervention studies with younger children exposed to violence. Given the extent of war and internal and external displacement of children and families in areas of conflict, there is an urgent need to bring more attention to the developmental effect on children.

Environmental Toxins Environmental toxins, such as lead, mercury, and arsenic, can be transmitted prenatally by the mother, as well as encountered postnatally, and have direct effects on the brain. Children in low- and middle-income countries may be especially vulnerable due to higher levels of exposure and other related risk factors for suboptimal development. Worldwide exposure to elevated lead levels in children are estimated to be around 40%, with children in low-, middle-, and upper-­ middle–income countries being at higher risk of exposure compared with children from high-income countries.119 Evidence from Poland demonstrates that prenatal exposure to very low concentrations (,5 mcg/dL) of environmental toxins is associated with poor mental development in young children.120 It is increasingly recognized that functional effects of environmental exposures may not have thresholds.121,122 Evidence of the effect of other toxins on early childhood development is limited.6 Data from China indicate that arsenic exposure may compromise cognition for older children.123 By contrast, research in Bangladesh has not identified a significant association between arsenic exposure and cognitive development up to age 2 years.124 Inconsistent findings also exist with regard to prenatal exposure to mercury and pesticides across low- and middle-income settings.26 Prenatal exposure to polycyclic aromatic hydrocarbons was associated with slower language and cognitive development up to age 2 years in China124 and intelligence at age 5 years in Poland.125 Comparison of findings is difficult because of variability in exposure duration, timing, and outcome measures or the presence of other risk factors, such as low birth weight.126

Protective Factors and Resilience Exposure to negative risk factors in early childhood does not necessarily result in harm. Protective factors, such as strong parent-child attachment and stimulation, attenuate the adverse consequences of toxic stress.127 Stimulation increases children’s interest in the world around them and cultivates their ability to communicate and interact with others in their environment. These benefits are sustained into adulthood, as evidenced by the Jamaican study mentioned previously.26 Maternal education has protective effects, reducing child mortality and promoting early child development even after controlling for family economics.128 Both young children at high risk with educated mothers and those who are not at

PGCH_ch14_219-252.indd 230

8/20/18 8:09 AM

231 Chapter 14: Child Development: The Next Global Health Frontier

high risk with educated mothers have higher levels of cognitive development than children of less-educated mothers.129–133 The protective mechanisms associated with greater maternal education include less maternal depression, improved child nutritional status, enhanced quality of the child-rearing environment, and the ability to access and benefit from interventions.6 Resilience is a special and important component of life success because it leads to successful adaptation in the face of stressful life circumstances.134 A child’s temperament, caregiving relations, and other factors likely contribute to the development of resilience, which protects against risks135 including extreme adversity, such as children in armed conflict.132 The single most common factor for children who develop resilience is at least one stable and committed relationship with a supportive parent, caregiver, or other adult.136 The promotion of resilience should include identifying strengths in individual cultures, such as extended family support, the arts, literature, and history of that culture that may ameliorate the consequences of stressors, including context-specific stresses such as gender inequality, leading to high rates of domestic violence. Increasingly, we are aware of the role of stigma in leading to negative consequences in child development. Positive community-based efforts that seek to ameliorate environmental conditions (eg, lack of play areas for children, violence, drug use) and improve community pride have shown positive results while not further stigmatizing underserved and distressed areas.137,138 Universal approaches that are based on evidence using public health interventions (eg, home visitation) need further investment and evaluation in support of child development and wellness.139

The Special Role of Culture Child behavior, development, and parenting are rooted in cultural values and norms. Pediatricians and other child health care professionals serving diverse populations in the United States, let alone globally, encounter a range of parenting styles and beliefs. However, training on how cultural norms shape parenting expectations may be minimal in many or most settings. When providing advice on early learning, difficult behavior, diet and nutrition, discipline, and special needs of children with disabilities, clinicians and others must consider how to sensitively help and respond to the diverse families they serve. Failure to consider local cultural practices and family expectations can limit the utility of child health interventions targeting child growth and development globally. Understanding culture is critical for working effectively with families, yet “cultural competency” is more than a technical skill obtained through training.140 Cultural competency requires inquiry into the individual values of a particular family, with a foundation of family-centered care. While culture is often made synonymous with ethnicity, nationality, and language, and families of a certain ethnicity are assumed to have homogeneous beliefs about parenting, culture in reality is not homogenous or static.141 One helpful definition of culture for early childhood is “a shared system of meaning, which includes values, beliefs, and assumptions expressed in daily interactions of individuals within a group

PGCH_ch14_219-252.indd 231

8/20/18 8:09 AM

232 Part 3: Educational Models in Global Health Settings

through a definite pattern of language, behavior, customs, attitudes, and ­practices.”142 Recently, the “anthropology of childhood” has coalesced into a distinct field.143 Ethnographies reveal a great diversity in definitions of, and ideas about, childhood, parenting, and the various roles and expectations placed on children according to their cultural background. Anthropological studies examining mother-baby interactions show that parents in agrarian societies are attentive to their babies’ safety and nutritional needs but do not regularly engage in social interaction or direct speech with babies before they start to talk.144 In rural Kenya, Dixon et al observed that mothers responded with touch and rarely with language to comfort and feed a crying baby. Contingent verbal communication, including verbal turn taking and scaffolding (see Appendix C), were not seen. When children were older, parents spoke more, but most speech involved commands for the child to do something, rather than using language to expand on a child’s interest or communication.145 These parenting practices and their associated beliefs likely depend on what contribution a child is expected to make to the family and ultimately to be a productive member of that society. If a child’s future depends on mastering a craft such as weaving or farming, children can develop that competency by watching adults with little need for cognitive or verbal input. However, this approach is likely not the best way to develop the cognitive and language skills needed for service and other business-related jobs. Because such jobs are needed for low- to middle-income countries to grow their economy, important efforts to improve educational opportunities and quality are being instituted. To best take advantage of improved school-based education, young children will need language, cognitive, and problem-solving foundational skills to prepare them to learn and be successful in school. Another framework in which to examine cultures is a continuum from individualistic to interdependent. This approach is rooted in the recognition that different cultures value different developmental trajectories of social roles. For example, US or European (Western) culture tends to stress independence, autonomy, and social assertiveness. As part of the thrust toward autonomy, babies not only sleep in their own bed but often in their own room. Young children are encouraged to make individual decisions in everyday situations (eg, “Which shirt do you want to wear?”). Parents also encourage behaviors that will enable their children to function on their own at the earliest age possible, such as feeding themselves and controlling themselves (self-regulation), as indicated in using time-out.146 In interdependent cultures, such as those commonly found in Asian, African, and Latin American countries, children typically are socialized to be responsible for their families, and their families in turn are responsible for them. The family unit generally includes extended family members, and optimal development is rooted in the ability to sacrifice personal goals for the good of the group. Parenting behaviors in interdependent cultures originated in agrarian societies, in which survival of the community required pooling limited resources and distributing them equitably.147 The focus on connection and collaboration over personal self-development is thought to be promoted by family routines such as co-sleeping, weaning at older ages, emphasizing obedience and respect toward

PGCH_ch14_219-252.indd 232

8/20/18 8:09 AM

233 Chapter 14: Child Development: The Next Global Health Frontier

adults, and playing collectively.148 Individualistic and interdependent cultural tendencies are not mutually exclusive or static but, rather, may coexist and change over time. These concepts serve as a useful lens for understanding different parental aspirations and values in early childhood.

Culture and Developmental Norms Historically, the development of young children was thought to be different in different populations and could not be monitored using universal standards. For example, one study found differences between small samples of Kenyan and American newborns on the Brazelton Neonatal Behavioral Assessment Scale and concluded that culture-specific models of development were needed.130 Consequently, countries developed their own milestones for developmental screenings through the “restandardization” of US-based instruments, such as the Denver Developmental Screening Test. A recent and extensive effort suggests that children across the world reach developmental milestones at similar times and that previous differences were largely a result of differential exposure to risk factors affecting development. The creation of an International Guide for Monitoring Child Development (IGMCD) led to the study of developmental milestones across 4 different countries (Turkey, India, South Africa, Argentina) in children aged 0 to 42 months in 11 languages among healthy children who met the following 4 health criteria: 1. Birth weight equal to or greater than 2,500 g without neonatal illness 2. No history of chronic illness 3. Weight above –2 z score on the WHO growth curves 4. Hemoglobin level equal to or greater than 10.5 g/dL A total of 130 IGMCD milestones in the expressive, receptive language, gross, fine motor, relating, play, and self-help domains were included, showing that most were achieved at similar ages by boys and girls in all 4 countries. The only exceptions involved milestones that required specific environmental exposures, such as climbing stairs.149 These results enable us to shift from focusing on context-­ specific tools to universal tools for monitoring and promoting early childhood development across countries.

Current Best Practices

Promoting Child Development Globally: Meeting the Challenge Because cultural context and societal values guide a child’s development to adulthood, the promotion of childhood development must be relevant to the needs and values of the child’s community. In response to reduction in child mortality rates and the increasing globalization of low- and middle-income countries via Internet connectivity, the aspirations of parents and communities for children are changing. A greater emphasis is being placed on education and learning rather than survival and physical growth alone. This change provides a special opportunity to educate about and involve parents with the actions they can take to insure their child is ready to learn when entering school.

PGCH_ch14_219-252.indd 233

8/20/18 8:09 AM

234 Part 3: Educational Models in Global Health Settings

Identification of Developmental Delay: Screening Versus Surveillance and Monitoring Screening children for developmental delay through use of standardized tools is an important part of well-child care in the United States. Without these tools, pediatricians fail to identify more than half of children with developmental delay in standard health supervision visits.150,151 Most screening tools rely on parental report because their observations and concerns have been shown to be a valid way to screen children in high-income countries.152 Low- and middle-income countries and resource-limited settings face special challenges to implementing universal screening due to the high prevalence of exposure to developmental risk factors, limited parental knowledge about child development, lack of trained staff, and lack of services to treat identified children with delay or disability. In high-risk populations where greater than half of children are malnourished or exposed to trauma, screening tools may be unethical or unnecessary and universal interventions may be more appropriate.153 Finally, screening without providing treatment options for children identified with developmental delay may actually be harmful to families by increasing caregiver anxiety or stigma. Nevertheless, a small number of developmental screening tools have been validated for use in international settings, including the Ages & Stages Questionnaires and the United Nations Children’s Fund (UNICEF) Multiple Indicator Cluster Surveys and Early Child Development Index (see Appendix C). However, these tools have limitations, including cost, lack of normative data from a local population for comparison, and milestones that are age specific rather than reflecting functional abilities in the context of a child’s environment. Many low- and middle-income settings have taken on the challenge of developing tools specific to local and resource-limited environments. For example, the Malawi Developmental Assessment Tool is a culturally appropriate tool for use in rural Africa that assesses gross/fine motor, language, and social skill with high sensitivity (97%) and specificity (82%) (see Appendix C).154 The Ten Questions screening tool for childhood disability, used to identify severe disability,155 has lower sensitivity in identifying mild disability or visual or hearing disorders.156 Developmental surveillance based on skilled observation and parental concern, first proposed in the United States, is likely a better fit for most low- and middle-income countries.157 The IGMCD is an example of a structured tool based on surveillance and monitoring that was developed to address many of the concerns with screening tools. It uses open-ended questions of caregivers that do not require parental knowledge of typical child development. For example, to assess a child’s expressive language and communication, caregivers are asked, “Tell me about how she communicates. How does she let you know when she wants something?” Items based on functional abilities have been validated and normed across 4 different countries (Turkey, India, South Africa, and Argentina). The tool also assesses risk factors such as maternal depression, exposure to trauma, and financial stressors and is designed to be implemented at a minimum of 9, 18, 24, and 36 months of age as a surveillance and monitoring tool. A

PGCH_ch14_219-252.indd 234

8/20/18 8:09 AM

235 Chapter 14: Child Development: The Next Global Health Frontier

s­ tandardized training curriculum prepares community health workers (CHWs) in administration of the tool as well as provision of developmental support to children with identified risk for delay. Advice to parents is contained in a “support card” (similar to UNICEF Care for Child Development [CCD] counselling cards) that assists parents in problem-solving to address risk factors. Children with severe delay are referred to a specialist for further evaluation.157 The approach exemplified by the IGMCD provides a special opportunity to implement and test the next generation of surveillance and intervention in low- and middle-income countries.

Addressing Developmental Delay and Disability in Low- and Middle-Income Countries: Future Directions Access to high-quality services for children with developmental disabilities remains limited, particularly in rural areas. However, there is clear potential to improve existing services even in the most resource-limited settings. Incorporation of treatment and therapies into existing school, nutrition, or health care infrastructure and involvement of parents and caregivers are crucial. Framing access to care and education for children with disabilities as a human rights issue moves all communities closer to more comprehensive and inclusive systems in education and health care. Traditionally, childhood disability has been defined through a biomedical lens assessing physiological impairments and genetic abnormalities. However, the field is now moving toward an understanding of child development on a continuous spectrum from disability to difficulties to optimal development. This framework is created to accommodate all children on the spectrum regardless of formal diagnosis of disability, and a child’s position on the spectrum may shift over time as the child encounters supportive or detrimental environments.158 A child’s developmental ability, therefore, is increasingly understood within the family, community, and society surrounding the child.31 Disability occurs when there is a mismatch between the child and the opportunities and obstacles presented by society for healthy development and well-being.159 These newer definitions create the foundation for building new services to improve developmental support for all children. For example, advocates have argued for expanding the WHO International Classification of Functioning, Disability and Health to include the concepts of family, fitness, fun, friends, and future.158 In contrast to services in high-income countries, most services for children with disabilities in low- and middle-income countries are provided by specifically trained CHWs. Urban areas in some settings are more likely to have referral centers with developmental specialists. However, even in urban areas, CHWs play an important role by delivering therapies in a culturally appropriate manner, maximizing involvement of the primary caregivers, and supporting home-based care.69,160 While programs designed for children identified as having disabilities have not been rigorously studied in low- and middle-income countries, we provide one

PGCH_ch14_219-252.indd 235

8/20/18 8:09 AM

236 Part 3: Educational Models in Global Health Settings

example to illustrate strategies for program design and delivery. The Ummeed Child Development Center in Mumbai is a nonprofit organization founded in 2001, initially, to provide services for children with a range of diagnoses, including cerebral palsy and autism spectrum disorder. The center conducts formal developmental assessments and provides individualized therapies with an interdisciplinary team (ie, occupational, speech, neurodevelopment). Ummeed expanded services by developing an outreach program targeting high-risk communities. Community health workers monitor children’s development families through use of the IGMCD tool,157 provide tailored support to families of children with developmental delays or disabilities, and advocate at a local level for families of children with disability. As of 2015, sixty CHWs have made home visits at least once a month to every family in their local communities where a child younger than 3 years resides. Frequency of visits increase for children identified with delays or with known risk factors (eg, malnutrition, anemia), and children can be referred to the Ummeed center for further evaluation. Community health workers are also trained to address maternal depression and domestic violence and identify available resources in the community. In addition, CHWs reach women in, for example, group settings, child care centers, community gatherings or festivals, and immunization events.

Universal Early Childhood Development Promotion Effective early childhood development programs are integrated with health and nutrition programs and use structured approaches to promote children’s development. Three related efforts that are in the early stages of being included as part of early childhood development programs are book sharing, digital media and technology, and maternal mental health and well-being. Scaling child development will best be accomplished by integrating it within health and/or nutrition systems because children with poor health and nutrition are also at risk of poor development. Moreover, health and nutrition sectors are often the only services reaching all children younger than 3 years. The most successful early childhood development programs globally are integrated into existing health systems; however, programs may be delivered across a variety of settings, including home visits, nutrition programs, and group gatherings.161 Standardized early childhood development curricula with specific instructions and high-quality training are especially important when services are delivered by “unskilled” personnel (eg, CHWs).69,162 One of the most widely disseminated universal early childhood development interventions is the WHO and UNICEF CCD counselling cards (Figure 14-2). Care for Child Development promotes positive parent-child interactions and provides a structure for discussing and teaching age-appropriate activities in the home for children from birth to 5 years of age. Care for Child Development has also been integrated with success into existing nutrition services in emergency settings163 to help families read child cues, engage in play and communication activities, and solve problems to overcome challenges in the home.164

PGCH_ch14_219-252.indd 236

8/20/18 8:09 AM

PGCH_ch14_219-252.indd 237

Recommendations for Care for Child Development NEWBORN, BIRTH UP TO 1 WEEK

1 WEEK UP TO 6 MONTHS

6 MONTHS UP TO 9 MONTHS

9 MONTHS UP TO 12 MONTHS

12 MONTHS UP TO 2 YEARS

2 YEARS AND OLDER

PLAY Provide ways for your child to see, hear, feel, move freely, and touch you. Slowly move colourful things for your child to see and reach for. Sample toys: shaker rattle, big ring on a string.

PLAY Give your child clean, safe household things to handle, bang, and drop. Sample toys: containers with lids, metal pot and spoon.

PLAY Hide a child’s favourite toy under a cloth or box. See if the child can find it. Play peek-a-boo.

PLAY Give your child things to stack up, and to put into containers and take out. Sample toys: Nesting and stacking objects,container and clothes clips.

PLAY Help your child count, name and compare things. Make simple toys for your child. Sample toys: Objects of different colours and shapes to sort, stick or chalk board, puzzle.

COMMUNICATE Ask your child simple questions. Respond to your child’s attempts to talk. Show and talk about nature, pictures and things.

COMMUNICATE Encourage your child to talk and answer your child’s questions. Teach your child stories, songs and games. Talk about pictures or books. Sample toy: book with pictures

Your baby learns from birth

COMMUNICATE Look into baby’s eyes and talk to your baby. When you are breastfeeding is a good time. Even a newborn baby sees your face and hears your voice.

COMMUNICATE Smile and laugh with your child. Talk to your child. Get a conversation going by copying your child’s sounds or gestures.

• Give your child affection and show your love

COMMUNICATE Respond to your child’s sounds and interests. Call the child’s name, and see your child respond.

COMMUNICATE Tell your child the names of things and people. Show your child how to say things with hands, like “bye bye”. Sample toy: doll with face.

• Be aware of your child’s interests and respond to them • Praise your child for trying to learn new skills

From Counsel the Family on Care for Child Development. Counselling Cards. © WHO, UNICEF. Reprinted with permission.

237

8/20/18 8:09 AM

Figure 14-2. Care for Child Development Counselling Cards

Chapter 14: Child Development: The Next Global Health Frontier

PLAY Provide ways for your baby to see, hear, move arms and legs freely, and touch you. Gently soothe, stroke and hold your child. Skin to skin is good.

238 Part 3: Educational Models in Global Health Settings

Individual countries have successfully created multisectoral national systems in support of early childhood development. Chile Crece Contigo is one such example of a national program providing universal and targeted early childhood development interventions through government and nongovernmental organizations. Chile Crece Contigo programs are available to all families prenatally through age 4 years fully funded by the government. Families become enrolled when receiving prenatal care at public hospitals. Medical, education, and social service ministries work together to provide access to maternal-child primary care, developmental screening, and referral for subspecialty evaluations, as well as access to nursery and preschools, cash transfers, and home visiting services. Chile Crece Contigo began in 2007 and grew to reach 80% of its target population of pregnant women. It has been widely cited as one of the most successful universal early childhood development initiatives outside of Europe.165

Parenting Interventions Providing young children with stimulating activities and exposing them to learning opportunities significantly enriches cognitive and social-emotional competence; however the impact can be affected by frequency of psychosocial stimulation.4,69,85,166 Moreover, intervention studies have demonstrated a sustained effect of early stimulation on adult functioning in cognitive as well as noncognitive domains, as in the Jamaican study referred to earlier in this chapter.26 Intervention studies from Brazil and South Africa that promoted maternal sensitivity and responsivity by providing information to mothers about the capabilities of their young infants showed short-term improvements in maternal behavior.167,168 Efforts to directly target mother-child interaction to potentially improve child developmental outcomes are commonly undermined by ongoing stressors, persistent depression, or anxiety symptoms that contribute to difficulties for children even in the absence of maternal mental health problems. While targeted interventions for mothers with known mental health concerns are important, a universal focus on supporting mother’s well-being is beneficial for the whole family. Evidence-based parenting programs globally provide mothers and families with information and support to promote child development, emphasizing parental responsiveness.83 Specific activities such as book sharing169 and play with homemade toys170 have been shown to improve early childhood development, promote secure infant attachment,171 and improve maternal mood in low- and middle-income settings.172 Five simple evidenced-based messages for promoting early childhood development, the “Boston Basics,” are used in a community-wide campaign in one US city and represent globally applicable ways families can support early relationships and learning (Box 14-1). Another parenting-oriented program is AÇEV, an early childhood initiative based in Turkey that has partnered with organizations in 13 countries. The cornerstone of its programming is a Mother Child Education Foundation, a home-centered education designed to promote mothers’ knowledge and skills in supporting their child’s development. It teaches mothers of preschool-aged

PGCH_ch14_219-252.indd 238

8/20/18 8:09 AM

239 Chapter 14: Child Development: The Next Global Health Frontier

Box 14-1. The Boston Basics 1.  Maximize love, manage stress. 2.  Talk, sing, and point. 3.  Count, group, and compare. 4.  Explore through movement and play. 5.  Read and discuss stories. Source: Boston Basics. The basics. http://boston.thebasics.org. Accessed July 6, 2018.

c­ hildren about the development of their children’s cognitive, social-emotional, and physical skills. AÇEV is also leading the future by launching a free mobile app, The First 6 Years (known as İlk Altı Yil in Turkish), that provides updated information about early childhood to mothers and fathers. The mobile app promotes parents’ knowledge of early childhood development through movies and photos. The app delivers information specific for the child’s age every other day for the first 6 years after birth. This program represents an important next-generation approach given the growing presence of mobile technology and the scalability of this modality. Mindset is a potentially important component to add to skill-building interventions that have proven to be successful in the United States, including programs for low-income families. Mindset, defined as an implicit belief or mental frame or understanding, helps individuals understand their actions and circumstances.173 A key aspect of mindset is the belief that certain types of abilities, such as intelligence, are malleable or fixed. For example, caregivers with growth mindsets believe that their children’s development is less fixed and more malleable and that, consequently, they can influence their children’s development. Caregivers with growth mindsets report they are more likely to engage in reading and math activities with their children, compared with parents with a fixed mindset.174 Moreover, caregivers who are trained to hold growth mindsets rather than fixed mindsets interact with their children in more constructive ways that promote learning.175 Studies also show that parents of school-aged children with growth mindsets have a greater involvement in their children’s learning activities and problem-solving.176 A growth mindset also includes the importance of effort and recognizes that failure is inevitable and represents an opportunity to learn. Mindset is not a stand-alone intervention; it does not replace skills, knowledge, context, and practice. Rather, it addresses the psychological meaning of an activity and potential barriers to effective behaviors. Thus, growth mindset interventions, which are brief, simple, and inexpensive, should be used in addition to skill-building interventions. Interventions should be reframed as challenges in parenting mindset and parent knowledge. Whether this approach will work with parents of younger children and in low- and middle-income settings remains to be determined.

PGCH_ch14_219-252.indd 239

8/20/18 8:09 AM

240 Part 3: Educational Models in Global Health Settings

Book Sharing and Early Literacy Promotion of language and literacy skills as key components of cognitive development represents an important target for parenting interventions in the early years after birth. Due to its centrality to school readiness, we want to emphasize this aspect of parenting intervention and, in particular, the role of book sharing. The exercises described as follows are designed for all child care providers regardless of their level of literacy. Infants’ brains are wired to learn language by 6 months of age177,178 in a manner that is extremely dependent on environmental influences, especially verbal input from adults and other caregivers.179 Studies from the United States show that children from low-income families hear approximately 30 million fewer words from caregivers compared with children from high-income families by the time they turn 4 years of age, leading to a lower number of words in their vocabulary and lower educational achievement in elementary school.180 In addition to this “word gap,” children from low-income families hear fewer novel words, shorter speech utterances, more commands, and fewer questions and conversational turns. Most importantly, low-income parents respond less to their child’s utterances, which is crucial not only for language learning but information processing.181,182 Other studies from the United States show vocabulary, understanding the meaning of words or sentences, and ability to tell a story are associated with better reading ability at school age and increased word recognition and reading comprehension over time.183 Clinical observations in most low- and middle-income countries show a low level of verbal interaction between parents and children with a preponderance of commands and directions. This most likely contributes to poor language acquisition, poor school performance, low literacy rates, and the inability of many children to achieve their developmental potential. A possible explanation is that parents teach and emphasize skills needed for survival in their country; traditionally, this includes working in the field and home rather than strong language and literacy skills. However, the skills needed for economic success and independence are changing with the increase in educational opportunities and expansion of service jobs. Books are an effective tool for stimulating positive parent-child verbal and affective interactions, as well as joint attention. Reading aloud promotes development of language and other emergent literacy skills184–187 that prepare children for school.184,188 Reading aloud achieves maximal benefits when parents go beyond reading the text and engage the child in an interactive dialogue during which parents ask children to point, to touch, or to show during book reading or ask children questions about the text. Even at early ages, looking at books together tends to elicit focused parent-child attention with language stimulation, turn taking, and a pleasurable interaction. This style of reading, known as dialogic reading, promotes brain development and early learning, including expressive language skills and other preliteracy skills.189–191 Research on the benefits of dialogic reading in low- and middle-income countries, although limited, provides encouragement for the use of books to

PGCH_ch14_219-252.indd 240

8/20/18 8:09 AM

241 Chapter 14: Child Development: The Next Global Health Frontier

promote early childhood development in those settings. A randomized, controlled trial in South Africa of 14- to 16-month-olds found that children whose parents were trained to provide dialogic reading for 8 weeks knew more words and showed increased attention, compared with children who received no intervention.192 Preschoolers in Bangladesh randomly selected to participate in a 4-week reading program by teachers trained in dialogic reading showed improvement in their expressive vocabulary compared with control children who participated in the regular language program.193 In Mexico, 2-year-olds who were read to by a child care teacher using dialogic reading techniques performed better on language tests and had more spontaneous language production than a control group.194 While not tested in these or other studies, additional common strategies to improve language acquisition include parents naming or labeling objects in the environment (ie, in the market or at home), telling children stories, and singing songs.

Harnessing Digital Technology for Child Development A special global opportunity, given the increasing affordability and availability of mobile technology and connectivity, is the use of digital technology to provide information and, potentially, prompts to parents to improve early literacy and language skills, similar to the effort by AÇEV. Another approach is interventions directly targeting the child as the user. The Curious Learning system is a collection of apps designed to stimulate specific processes and underlying areas of the brain needed for language and emergent literacy skills. The goal is to promote global literacy. Piloting is underway in low- and middle-income sites to evaluate whether this approach can help children learn to read, even in the absence of a teacher or literate adult.195,196 Preliminary results are available from rural Ethiopia with children without prior access to technologies such as tablets and little or no exposure to English.195,196 Children used the tablets approximately 6 hours a day, typically sharing the multiple apps and educational media on the tablets with each other. Over time, children were noted to open less apps but spent more time using a specific app, suggesting deeper engagement. After 1 year, children demonstrated technological familiarity, basic conceptual growth, and vocabulary development, as well as preliteracy skills, suggesting a proof of concept that mobile devices may provide precursors to literacy and the skills to begin learning another language.195 Future applications of the Curious Learning system will have templates for learning to read that may be developed in other native languages.195 However, learning English provides a basis for economic and educational development in settings such as India, where secondary education is based in English. Digital learning applications similar to the Curious Learning system, rooted in theory and evidence, may provide effective literacy; related apps should be coupled with reading and learning interactions with caring parents, other caregivers, and older children. Parents who are not literate can promote language and literacy through singing, telling stories, and asking questions with turn-taking interactions.

PGCH_ch14_219-252.indd 241

8/20/18 8:09 AM

242 Part 3: Educational Models in Global Health Settings

Maternal Mental Health and Well-being and Mobilizing Communities to Change Common mental health problems among mothers, especially depression and trauma, interfere with the responsiveness and nurturing needed by children to flourish. A substantial number of health, developmental, and behavioral problems are attributed to maternal depression, and interventions for mothers affected by postpartum depression demonstrate positive effects for mother and child.197 Interventions in Pakistan and South Africa delivered by CHWs show reduced maternal depressive symptoms and improved maternal sensitivity, infant attachment, infant health, and time spent with infants.198,199 Evidence from several randomized, controlled trials in low- and middle-income countries that maternal depressive symptoms can be effectively treated by CHWs171,199,200 highlights the need for early identification and community programs to reduce adverse consequences for children and mothers. There is also evidence to suggest that maternal participation in activities that promote child development leads to a decrease in maternal depressive symptoms.200 This may be the result of supportive counseling and peer support. Similarly, problem-solving approaches that help depressed mothers resolve challenges such as competing demands on maternal time can also result in improved caregiving practices, including feeding.199 Globally, treating women for depression or other mental health problems occurs in separate sectors,201 and while benefiting children, these efforts are yet to be connected fully to parent-child programs. This is important because these problems interfere with life functioning, including parenting. It is likely that the full benefit of parenting interventions is lost or attenuated among mothers who are experiencing depression until they have some treatment for their depression. Impaired maternal well-being, including depressive symptoms, may be responsive to support from groups of mothers with a structured focus on helping mothers gain self-understanding, hope, and strategies to change aspects of their life so they feel and function better. An example of one such effort is Parenting Journey, a program that reaches thousands of parents in the United States and has been successfully implemented in Burundi since 2014 and is expanding to Guatemala. Parenting Journey is a 12-step weekly group program for parents who have little experience being nurtured and who need to regain the notion of hope and possibility in their lives. The program is facilitated by a trained member of the community and combines 2 key change strategies. The first component helps parents look deeply at the ways they were parented, the values they were taught, and the methods their parents used to instill discipline and show affection. Following this exploration, cognitive behavioral strategies are used to help parents make small but feasible changes in their lives based on their newly gained insight. The mothers in the group support the difficult disclosure of their upbringing as well as the action and change they choose to enact as new parents. The group process of Parenting Journey and others, such as Renforcement Des Pratiques Parentales in Senegal, serves as a stimulus to change social norms.79 By promoting

PGCH_ch14_219-252.indd 242

8/20/18 8:09 AM

243 Chapter 14: Child Development: The Next Global Health Frontier

parental self-confidence and effectiveness to solve daily problems, parents recognize their strength and make the connection that changes in the family can best happen when similar changes occur in their community. One powerful example is identifying the need to change the social norm of accepting domestic violence as an extension of reducing such violence in their own homes.

Conclusion The adverse effects of poverty-related risk factors on a child’s development can be reduced. Our understanding of developmental neuroscience and the effect of adverse early experiences suggests children, particularly those in high-risk communities, are served best by implementing universal programs to promote early childhood development for all families. The knowledge base for promoting global early childhood development is growing, and the first generation of efforts will provide opportunities to learn and improve. The expansion of educational opportunities for school-aged children will be an important stimulus to promote early childhood development so children start school ready to learn. Such efforts at scale in conjunction with ongoing programs to prevent malnutrition, infections, perinatal morbidity, etc, are needed. It is also important that daily learning activities be coupled with parental support and targeted interventions for those who are depressed or traumatized. The future of early childhood development, including a focus on maternal well-being and parenting programs to promote early learning principles, will find synergy in integrated programs in low- and middle-income settings.

References 1. Bryce J, Victora CG, Black RE. The unfinished agenda in child survival. Lancet. 2013;382(9897):1049–1059 2. Wise PH, Darmstadt GL. The grand divergence in global child health: confronting data requirements in areas of conflict and chronic political instability. JAMA Pediatr. 2016;170(3): 195–197 3. Lu C, Black MM, Richter LM. Risk of poor development in young children in low-income and middle-income countries: an estimation and analysis at the global, regional, and country level. Lancet Glob Health. 2016;4(12):e916–e922 4. Walker SP, Wachs TD, Gardner JM, et al. Child development: risk factors for adverse outcomes in developing countries. Lancet. 2007;369(9556):145–157 5. Friedman J, Sturdy J. The influence of economic crisis on early childhood development: a review of pathways and measured impact. In: Alderman H, ed. No Small Matter: The Impact of Poverty, Shocks, and Human Capital Investments in Early Childhood Development. Washington, DC: The International Bank for Reconstruction and Development/The World Bank; 2011:51–84 6. Walker SP, Wachs TD, Grantham-McGregor S, et al. Inequality in early childhood: risk and protective factors for early child development. Lancet. 2011;378(9799):1325–1338 7. Sheffield PE, Landrigan PJ. Global climate change and children’s health: threats and strategies for prevention. Environ Health Perspect. 2011;119(3):291–298 8. Benedict RE, Farel AM. Identifying children in need of ancillary and enabling services: a population approach. Soc Sci Med. 2003;57(11):2035–2047 9. Boyle CA, Decouflé P, Yeargin-Allsopp M. Prevalence and health impact of developmental disabilities in US children. Pediatrics. 1994;93(3):399–403

PGCH_ch14_219-252.indd 243

8/20/18 8:09 AM

244 Part 3: Educational Models in Global Health Settings

10. World Health Organization. Developmental Difficulties in Early Childhood: Prevention, Early Identification, Assessment and Intervention in Low- and MiddleIncome Countries: A Review. Geneva, Switzerland: World Health Organization; 2012. http://apps.who.int/iris/bitstream/handle/10665/97942/9789241503549_eng. pdf;jsessionid5C2373B1662EF001B22843D34BB60C856?sequence51. Accessed July 3, 2018 11. United Nations Children’s Fund. The State of the World’s Children 2013: Children with Disabilities. New York, NY: United Nations Children’s Fund; 2013. https://www.unicef.org/sowc2013/files/ SWCR2013_ENG_Lo_res_24_Apr_2013.pdf. Accessed June 22, 2018 12. Maulik PK, Darmstadt GL. Childhood disability in low- and middle-income countries: overview of screening, prevention, services, legislation, and epidemiology. Pediatrics. 2007;120(Suppl 1): S1–S55 13. Fox SE, Levitt P, Nelson CA. How the timing and quality of early experiences influence the development of brain architecture. Child Dev. 2010;81(1):28–40 14. Shonkoff JP, Garner AS; American Academy of Pediatrics Committee on Psychosocial Aspects of Child and Family Health; Committee on Early Childhood, Adoption, and Dependent Care; and Section on Developmental and Behavioral Pediatrics. The lifelong effects of early childhood aversity and toxic stress. Pediatrics. 2012;129(1):e232–e246. Reaffirmed July 2016 15. Center on the Developing Child at Harvard University. Building the Brain’s “Air Traffic Control” System: How Early Experiences Shape the Development of Executive Function: Working Paper No. 11. https://developingchild.harvard.edu/resources/building-the-brains-air-traffic-controlsystem-how-early-experiences-shape-the-development-of-executive-function. Accessed June 22, 2018 16. Moffitt TE, Arseneault L, Belsky D, et al. A gradient of childhood self-control predicts health, wealth, and public safety. Proc Natl Acad Sci U S A. 2011;108(7):2693–2698 17. Evans GW, Rosenbaum J. Self-regulation and the income-achievement gap. Early Child Res Q. 2008;23(4):504–514 18. Reardon SF. The widening income achievement gap. Educ Leadersh. 2013;70(8):10–16 19. McLaughlin B. Second-Language Acquisition in Childhood. Volume 2: School-Age Children. New York, NY: Psychology Press; 1985 20. Kim KH, Relkin NR, Lee KM, Hirsch J. Distinct cortical areas associated with native and second languages. Nature. 1997;388(6638):171–174 21. Nelson CA 3rd, Zeanah CH, Fox NA, Marshall PJ, Smyke AT, Guthrie D. Cognitive recovery in socially deprived young children: the Bucharest Early Intervention Project. Science. 2007;318(5858):1937–1940 22. McEwen BS. Physiology and neurobiology of stress and adaptation: central role of the brain. Physiol Rev. 2007;87(3):873–904 23. Grossman AW, Churchill JD, McKinney BC, Kodish IM, Otte SL, Greenough WT. Experience effects on brain development: possible contributions to psychopathology. J Child Psychol Psychiatry. 2003;44(1):33–63 24. Dong M, Giles WH, Felitti VJ, et al. Insights into causal pathways for ischemic heart disease: Adverse Childhood Experiences Study. Circulation. 2004;110(13):1761–1766 25. Felitti VJ, Anda RF, Nordenberg D, et al. Relationship of childhood abuse and household dysfunction to many of the leading causes of death in adults. The Adverse Childhood Experiences (ACE) Study. Am J Prev Med. 1998;14(4):245–258 26. Walker SP, Chang SM, Vera-Hernández M, Grantham-McGregor S. Early childhood stimulation benefits adult competence and reduces violent behavior. Pediatrics. 2011;127(5):849–857 27. Sameroff AJ, Fiese BH. Transactional regulation: the developmental ecology of early intervention. In: Shonkoff JP, Meisels SJ, eds. Handbook of Early Childhood Intervention. Cambridge, United Kingdom: Cambridge University Press; 2000:135–159 28. Rothbart MK, Putnam SP. Temperament and socialization. In: Pulkkinen L, Caspi A, eds. Paths to Successful Development: Personality in the Life Course. Cambridge, United Kingdom: Cambridge University Press; 2002:19–45 29. deVries MW. Temperament and infant mortality among the Masai of East Africa. Am J Psychiatry. 1984;141(10):1189–1194

PGCH_ch14_219-252.indd 244

8/20/18 8:09 AM

245 Chapter 14: Child Development: The Next Global Health Frontier

30. Parker S, Greer S, Zuckerman B. Double jeopardy: the impact of poverty on early child development. Pediatr Clin North Am. 1988;35(6):1227–1240 31. Ertem IO, Weitzman CC. Childhood development. In: Rudolph CD, Rudolph AM, Lister G, First LR, Gershon AA, eds. Rudolph’s Pediatrics. 22nd ed. New York, NY: McGraw-Hill; 2011:34–41 32. O’Hara M, Legano L, Homel P, Walker-Descartes I, Rojas M, Laraque D. Children neglected: where cumulative risk theory fails. Child Abuse Negl. 2015;45:1–8 33. Lawn JE, Blencowe H, Oza S, et al. Every newborn: progress, priorities, and potential beyond survival. Lancet. 2014;384(9938):189–205 34. Darmstadt GL, Kinney MV, Chopra M, et al. Who has been caring for the baby? Lancet. 2014;384(9938):174–188 35. Bear LM. Early identification of infants at risk for developmental disabilities. Pediatr Clin North Am. 2004;51(3):685–701 36. Joint United Nations Programme on HIV/AIDS. How AIDS Changed Everything. MDG6: 15 Years, 15 Lessons of Hope From the AIDS Response. Geneva, Switzerland: Joint United Nations Programme on HIV/AIDS; 2015. http://www.unaids.org/sites/default/files/media_asset/ MDG6Report_en.pdf. Accessed June 22, 2018 37. Sherr L, Croome N, Parra Castaneda K, Bradshaw K. A systematic review of psychological functioning of children exposed to HIV: using evidence to plan for tomorrow’s HIV needs. AIDS Behav. 2014;18(11):2059–2074 38. Mellins CA, Malee KM. Understanding the mental health of youth living with perinatal HIV infection: lessons learned and current challenges. J Int AIDS Soc. 2013;16:18593 39. Chiriboga CA, Fleishman S, Champion S, Gaye-Robinson L, Abrams EJ. Incidence and prevalence of HIV encephalopathy in children with HIV infection receiving highly active anti-retroviral therapy (HAART). J Pediatr. 2005;146(3):402–407 40. Lindsey JC, Malee KM, Brouwers P, Hughes MD. Neurodevelopmental functioning in HIVinfected infants and young children before and after the introduction of protease inhibitor–based highly active antiretroviral therapy. Pediatrics. 2007;119(3):e681–e693 41. Van Rie A, Dow A, Mupuala A, Stewart P. Neurodevelopmental trajectory of HIV-infected children accessing care in Kinshasa, Democratic Republic of Congo. J Acquir Immune Defic Syndr. 2009;52(5):636–642 42. Laughton B, Cornell M, Grove D, et al. Early antiretroviral therapy improves neurodevelopmental outcomes in infants. AIDS. 2012;26(13):1685–1690 43. Barnard M, McKeganey N. The impact of parental problem drug use on children: what is the problem and what can be done to help? Addiction. 2004;99(5):552–559 44. Twomey J, LaGasse L, Derauf C, et al. Prenatal methamphetamine exposure, home environment, and primary caregiver risk factors predict child behavioral problems at 5 years. Am J Orthopsychiatry. 2013;83(1):64–72 45. LaGasse LL, Derauf C, Smith LM, et al. Prenatal methamphetamine exposure and childhood behavior problems at 3 and 5 years of age. Pediatrics. 2012;129(4):681–688 46. Sanmaneechai O, Puthanakit T, Louthrenoo O, Sirisanthana V. Growth, developmental, and behavioral outcomes of HIV-affected preschool children in Thailand. J Med Assoc Thai. 2005;88(12):1873–1879 47. Van Rie A, Mupuala A, Dow A. Impact of the HIV/AIDS epidemic on the neurodevelopment of preschool-aged children in Kinshasa, Democratic Republic of the Congo. Pediatrics. 2008;122(1):e123–e128 48. Kerr SJ, Puthanakit T, Vibol U, et al. Neurodevelopmental outcomes in HIV-exposed-uninfected children versus those not exposed to HIV. AIDS Care. 2014;26(11):1327–1335 49. Sirois PA, Huo Y, Williams PL, et al. Safety of perinatal exposure to antiretroviral medications: developmental outcomes in infants. Pediatr Infect Dis J. 2013;32(6):648–655 50. Rochat TJ, Richter LM, Doll HA, Buthelezi NP, Tomkins A, Stein A. Depression among pregnant rural South African women undergoing HIV testing. JAMA. 2006;295(12):1376–1378 51. Sherr L, Cluver LD, Betancourt TS, Kellerman SE, Richter LM, Desmond C. Evidence of impact: health, psychological and social effects of adult HIV on children. AIDS. 2014;28(Suppl 3): S251–S259

PGCH_ch14_219-252.indd 245

8/20/18 8:09 AM

246 Part 3: Educational Models in Global Health Settings

52. Cluver L, Orkin M, Boyes M, Gardner F, Meinck F. Transactional sex amongst AIDS-orphaned and AIDS-affected adolescents predicted by abuse and extreme poverty. J Acquir Immune Defic Syndr. 2011;58(3):336–343 53. Jewkes R, Nduna M, Levin J, et al. Impact of stepping stones on incidence of HIV and HSV-2 and sexual behaviour in rural South Africa: cluster randomised controlled trial. BMJ. 2008;337:a506 54. Richter L, Komárek A, Desmond C, et al. Reported physical and sexual abuse in childhood and adult HIV risk behaviour in three African countries: findings from Project Accept (HPTN-043). AIDS Behav. 2014;18(2):381–389 55. Breuer E, Myer L, Struthers H, Joska JA. HIV/AIDS and mental health research in sub-Saharan Africa: a systematic review. Afr J AIDS Res. 2011;10(2):101–122 56. Sherr L, Mueller J. Where is the evidence base? Mental health issues surrounding bereavement and HIV in children. J Public Ment Health. 2009;7(4):31–39 57. Cluver L, Gardner F, Operario D. Psychological distress amongst AIDS-orphaned children in urban South Africa. J Child Psychol Psychiatry. 2007;48(8):755–763 58. Sherr L, Varrall R, Mueller J, et al. A systematic review on the meaning of the concept ‘AIDS Orphan’: confusion over definitions and implications for care. AIDS Care. 2008;20(5):527–536 59. Bauman LJ, Silver EJ, Draimin BH, Hudis J. Children of mothers with HIV/AIDS: unmet needs for mental health services. Pediatrics. 2007;120(5):e1141–e1147 60. Cluver LD, Orkin M, Boyes ME, Gardner F, Nikelo J. AIDS-orphanhood and caregiver HIV/AIDS sickness status: effects on psychological symptoms in South African youth. J Pediatr Psychol. 2012;37(8):857–867 61. World Health Organization. Malaria. Fact sheet. http://www.who.int/mediacentre/factsheets/ fs094/en. Updated November 2017. Accessed June 22, 2018 62. Bangirana P, Idro R, John CC, Boivin MJ. Rehabilitation for cognitive impairments after cerebral malaria in African children: strategies and limitations. Trop Med Int Health. 2006;11(9):1341–1349 63. Kihara M, Carter JA, Newton CR. The effect of Plasmodium falciparum on cognition: a systematic review. Trop Med Int Health. 2006;11(4):386–397 64. Holding PA, Kitsao-Wekulo PK. Describing the burden of malaria on child development: what should we be measuring and how should we be measuring it? Am J Trop Med Hyg. 2004;71 (2 Suppl):71–79 65. World Health Organization. Soil-transmitted helminth infections. Fact sheet. http://www.who.int/ mediacentre/factsheets/fs366/en. Updated February 20, 2018. Accessed July 3, 2018 66. Humphrey JH. Child undernutrition, tropical enteropathy, toilets, and handwashing. Lancet. 2009;374(9694):1032–1035 67. Weisz AJ, Manary MJ, Stephenson K, et al. Abnormal gut integrity is associated with reduced linear growth in rural Malawian children. J Pediatr Gastroenterol Nutr. 2012;55(6):747–750 68. McKay S, Gaudier E, Campbell DI, Prentice AM, Albers R. Environmental enteropathy: new targets for nutritional interventions. Int Health. 2010;2(3):172–180 69. Aboud FE, Yousafzai AK. Global health and development in early childhood. Annu Rev Psychol. 2015;66:433–457 70. Fischer Walker CL, Lamberti L, Adair L, et al. Does childhood diarrhea influence cognition beyond the diarrhea-stunting pathway? PloS One. 2012;7(10):e47908 71. Checkley W, Buckley G, Gilman RH, et al. Multi-country analysis of the effects of diarrhoea on childhood stunting. Int J Epidemiol. 2008;37(4):816–830 72. Lorntz B, Soares AM, Moore SR, et al. Early childhood diarrhea predicts impaired school performance. Pediatr Infect Dis J. 2006;25(6):513–520 73. Patrick PD, Oriá RB, Madhavan V, et al. Limitations in verbal fluency following heavy burdens of early childhood diarrhea in Brazilian shantytown children. Child Neuropsychol. 2005;11(3): 233–244 74. Black RE, Victora CG, Walker SP, et al. Maternal and child undernutrition and overweight in lowincome and middle-income countries. Lancet. 2013;382(9890):427–451 75. Aburto NJ, Ramirez-Zea M, Neufeld LM, Flores-Ayala R. Some indicators of nutritional status are associated with activity and exploration in infants at risk for vitamin and mineral deficiencies. J Nutr. 2009;139(9):1751–1757

PGCH_ch14_219-252.indd 246

8/20/18 8:09 AM

247 Chapter 14: Child Development: The Next Global Health Frontier

76. Gardner JM, Grantham-McGregor SM, Himes J, Chang S. Behaviour and development of stunted and nonstunted Jamaican children. J Child Psychol Psychiatry. 1999;40(5):819–827 77. McCoy DC, Zuilkowski SS, Fink G. Poverty, physical stature, and cognitive skills: mechanisms underlying children’s school enrollment in Zambia. Dev Psychol. 2015;51(5):600–614 78. Mullainathan S, Shafir E. Scarcity: Why Having Too Little Means So Much. New York, NY: Times Books; 2013 79. World Bank Group. World Development Report 2015: Mind, Society, and Behavior. Washington, DC: International Bank for Reconstruction and Development/The World Bank; 2015. http://documents.worldbank.org/curated/en/645741468339541646/ pdf/928630WDR0978100Box385358B00PUBLIC0.pdf. Accessed June 22, 2018 80. Fernald LC, Weber A, Galasso E, Ratsifandrihamanana L. Socioeconomic gradients and child development in a very low income population: evidence from Madagascar. Dev Sci. 2011;14(4):832–847 81. Hackman DA, Farah MJ. Socioeconomic status and the developing brain. Trends Cogn Sci. 2009;13(2):65–73 82. Britto PR, Lye SJ, Proulx K, et al. Nurturing care: promoting early childhood development. Lancet. 2017;389(10064):91–102 83. Bradley RH, Corwyn RF. Caring for children around the world: a view from HOME. Int J Behav Dev. 2005;29(6):468–478 84. Posada G, Jacobs A, Richmond MK, et al. Maternal caregiving and infant security in two cultures. Dev Psychol. 2002;38(1):67–78 85. Engle PL, Black MM, Behrman JR, et al. Strategies to avoid the loss of developmental potential in more than 200 million children in the developing world. Lancet. 2007;369(9557):229–242 86. Bradley RH, Caldwell BM. The relation of infants’ home environments to achievement test performance in first grade: a follow-up study. Child Dev. 1984;55(3):803–809 87. Kariger P, Frongillo EA, Engle P, Britto PM, Sywulka SM, Menon P. Indicators of family care for development for use in multicountry surveys. J Health Popul Nutr. 2012;30(4):472–486 88. Hamadani JD, Tofail F, Hilaly A, Huda SN, Engle P, Grantham-McGregor SM. Use of family care indicators and their relationship with child development in Bangladesh. J Health Popul Nutr. 2010;28(1):23–33 89. Bornstein MH, Putnick DL. Cognitive and socioemotional caregiving in developing countries. Child Dev. 2012;83(1):46–61 90. Posada G, Jacobs A, Carbonell OA, Alzate G, Bustamante MR, Arenas A. Maternal care and attachment security in ordinary and emergency contexts. Dev Psychol. 1999;35(6):1379–1388 91. Tomlinson M, Cooper P, Murray L. The mother-infant relationship and infant attachment in a South African peri-urban settlement. Child Dev. 2005;76(5):1044–1054 92. Valenzuela M. Maternal sensitivity in a developing society: the context of urban poverty and infant chronic undernutrition. Dev Psychol. 1997;33(5):845–855 93. Firk C, Dahmen B, Lehmann C, et al. A mother-child intervention program in adolescent mothers and their children to improve maternal sensitivity, child responsiveness and child development (the TeeMo study): study protocol for a randomized controlled trial. Trials. 2015;16(1):230 94. Teti DM, Gelfand DM. Behavioral competence among mothers of infants in the first year: the mediational role of maternal self-efficacy. Child Dev. 1991;62(5):918–929 95. Gondoli DM, Silverberg SB. Maternal emotional distress and diminished responsiveness: the mediating role of parenting efficacy and parental perspective taking. Dev Psychol. 1997;33(5): 861–868 96. Wachs TD, Black MM, Engle PL. Maternal depression: a global threat to children’s health, development, and behavior and to human rights. Child Dev Perspect. 2009;3(1):51–59 97. Parsons CE, Young KS, Rochat TJ, Kringelbach ML, Stein A. Postnatal depression and its effects on child development: a review of evidence from low- and middle-income countries. Br Med Bull. 2012;101:57–79 98. Fisher J, Cabral de Mello M, Patel V, et al. Prevalence and determinants of common perinatal mental disorders in women in low- and lower-middle-income countries: a systematic review. Bull World Health Organ. 2012;90(2):139G–149G

PGCH_ch14_219-252.indd 247

8/20/18 8:09 AM

248 Part 3: Educational Models in Global Health Settings

99. Galler JR, Harrison RH, Ramsey F, Forde V, Butler SC. Maternal depressive symptoms affect infant cognitive development in Barbados. J Child Psychol Psychiatry. 2000;41(6):747–757 100. Patel V, DeSouza N, Rodrigues M. Postnatal depression and infant growth and development in low income countries: a cohort study from Goa, India. Arch Dis Child. 2003;88(1):34–37 101. Hadley C, Tegegn A, Tessema F, Asefa M, Galea S. Parental symptoms of common mental disorders and children’s social, motor, and language development in sub-Saharan Africa. Ann Hum Biol. 2008;35(3):259–275 102. Quevedo LA, Silva RA, Godoy R, et al. The impact of maternal post-partum depression on the language development of children at 12 months. Child Care Health Dev. 2012;38(3):420–424 103. Kaplan PS, Danko CM, Diaz A, Kalinka CJ. An associative learning deficit in 1-year-old infants of depressed mothers: role of depression duration. Infant Behav Dev. 2011;34(1):35–44 104. Sutter-Dallay AL, Murray L, Dequae-Merchadou L, Glatigny-Dallay E, Bourgeois ML, Verdoux H. A prospective longitudinal study of the impact of early postnatal vs. chronic maternal depressive symptoms on child development. Eur Psychiatry. 2011;26(8):484–489 105. Surkan PJ, Ettinger AK, Ahmed S, Minkovitz CS, Strobino D. Impact of maternal depressive symptoms on growth of preschool- and school-aged children. Pediatrics. 2012;130(4):e847–e855 106. Stewart RC. Maternal depression and infant growth: a review of recent evidence. Matern Child Nutr. 2007;3(2):94–107 107. Patel V, Rahman A, Jacob KS, Hughes M. Effect of maternal mental health on infant growth in low income countries: new evidence from South Asia. BMJ. 2004;328(7443):820–823 108. Wojcicki JM, Holbrook K, Lustig RH, et al. Chronic maternal depression is associated with reduced weight gain in Latino infants from birth to 2 years of age. PloS One. 2011;6(2):e16737 109. Rahman A, Iqbal Z, Bunn J, Lovel H, Harrington R. Impact of maternal depression on infant nutritional status and illness: a cohort study. Arch Gen Psychiatry. 2004;61(9):946–952 110. Rahman A, Bunn J, Lovel H, Creed F. Maternal depression increases infant risk of diarrhoeal illness: a cohort study. Arch Dis Child. 2007;92(1):24–28 111. Cruz M, Randell KA, Bair-Merritt MH, Dowd MD. Children outcomes and intimate partner violence research. Lancet. 2013;382(9901):1326 112. Lustig SL. An ecological framework for the refugee experience: what is the impact on child development? Paper presented at: First Bronfenbrenner Conference on the Ecology of Human Development; October 2007 113. Almqvist K, Broberg AG. Young children traumatized by organized violence together with their mothers—the critical effects of damaged internal representations. Attach Hum Dev. 2003;5(4): 367–380; discussion 409–414 114. Kithakye M, Morris AS, Terranova AM, Myers SS. The Kenyan political conflict and children’s adjustment. Child Dev. 2010;81(4):1114–1128 115. Shaw JA. Children exposed to war/terrorism. Clin Child Fam Psychol Rev. 2003;6(4):237–246 116. Barenbaum J, Ruchkin V, Schwab-Stone M. The psychosocial aspects of children exposed to war: practice and policy initiatives. J Child Psychol Psychiatry. 2004;45(1):41–62 117. Wolff PH, Fesseha G. The orphans of Eritrea: are orphanages part of the problem or part of the solution? Am J Psychiatry. 1998;155(10):1319–1324 118. Dybdahl R. Children and mothers in war: an outcome study of a psychosocial intervention program. Child Dev. 2001;72(4):1214–1230 119. World Health Organization. The World Health Report 2002: Reducing Risks, Promoting Healthy Life. Geneva, Switzerland: World Health Organization; 2002. http://www.who.int/whr/2002/en/ whr02_en.pdf?ua51. Accessed June 22, 2018 120. Jedrychowski W, Perera FP, Jankowski J, et al. Very low prenatal exposure to lead and mental development of children in infancy and early childhood: Krakow prospective cohort study. Neuroepidemiology. 2009;32(4):270–278 121. Wigle DT, Lanphear BP. Human health risks from low-level environmental exposures: no apparent safety thresholds. PLoS Med. 2005;2(12):e350 122. Mattison DR. Environmental exposures and development. Curr Opin Pediatr. 2010;22(2):208–218 123. Wang SX, Wang ZH, Cheng XT, et al. Arsenic and fluoride exposure in drinking water: children’s IQ and growth in Shanyin county, Shanxi province, China. Environ Health Perspect. 2007;115(4):643–647

PGCH_ch14_219-252.indd 248

8/20/18 8:09 AM

249 Chapter 14: Child Development: The Next Global Health Frontier

124. Tang D, Li TY, Liu JJ, et al. Effects of prenatal exposure to coal-burning pollutants on children’s development in China. Environ Health Perspect. 2008;116(5):674–679 125. Edwards SC, Jedrychowski W, Butscher M, et al. Prenatal exposure to airborne polycyclic aromatic hydrocarbons and children’s intelligence at 5 years of age in a prospective cohort study in Poland. Environ Health Perspect. 2010;118(9):1326–1331 126. Handal AJ, Lozoff B, Breilh J, Harlow SD. Effect of community of residence on neurobehavioral development in infants and young children in a flower-growing region of Ecuador. Environ Health Perspect. 2007;115(1):128–133 127. Shonkoff JP, Boyce WT, McEwen BS. Neuroscience, molecular biology, and the childhood roots of health disparities: building a new framework for health promotion and disease prevention. JAMA. 2009;301(21):2252–2259 128. Boyle MH, Racine Y, Georgiades K, et al. The influence of economic development level, household wealth and maternal education on child health in the developing world. Soc Sci Med. 2006;63(8):2242–2254 129. Barros AJ, Matijasevich A, Santos IS, Halpern R. Child development in a birth cohort: effect of child stimulation is stronger in less educated mothers. Int J Epidemiol. 2010;39(1):285–294 130. Castro DC, Lubker BB, Bryant DM, Skinner M. Oral language and reading abilities of first-grade Peruvian children: associations with child and family factors. Int J Behav Dev. 2002;26(4):334–344 131. Paxson C, Schady N. Cognitive development among young children in Ecuador: the roles of wealth, health, and parenting. J Hum Resour. 2007;42(1):49–84 132. Betancourt TS, Khan KT. The mental health of children affected by armed conflict: protective processes and pathways to resilience. Int Rev Psychiatry. 2008;20(3):317–328 133. Wang LW, Wang ST, Huang CC. Preterm infants of educated mothers have better outcome. Acta Paediatr. 2008;97(5):568–573 134. Masten AS, Best KM, Garmezy N. Resilience and development: contributions from the study of children who overcome adversity. Dev Psychopathol. 1990;2(4):425–444 135. Beauvais F, Oetting ER. Drug use, resilience, and the myth of the golden child. In: Glantz MD, Johnson JL, eds. Resilience and Development: Positive Life Adaptations. New York, NY: Springer Science1Business Media; 1999:101–108 136. Center on the Developing Child at Harvard University. Resilience. http://developingchild.harvard. edu/science/key-concepts/resilience. Accessed June 22, 2018 137. Laraque D, Barlow B, Durkin M, Heagarty M. Injury prevention in an urban setting: challenges and successes. Bull N Y Acad Med. 1995;72(1):16–30 138. Durkin MS, Kuhn L, Davidson LL, Laraque D, Barlow B. Epidemiology and prevention of severe assault and gun injuries to children in an urban community. J Trauma. 1996;41(4):667–673 139. Bilukha O, Hahn RA, Crosby A, et al. The effectiveness of early childhood home visitation in preventing violence: a systematic review. Am J Prev Med. 2005;28(2 Suppl 1):11–39 140. DelVecchio Good MJ. American Medicine: The Quest for Competence. Berkeley, CA: University of California Press; 1995 141. Kleinman A, Benson P. Anthropology in the clinic: the problem of cultural competency and how to fix it. PLoS Med. 2006;3(10):e294 142. Maschinot B. The Changing Face of the United States: The Influence of Culture on Early Child Development. Washington, DC: Zero to Three; 2008. http://ceed.umn.edu/wp-content/ uploads/2017/05/The_Changing_Face_of_the_US_Machinot.pdf. Accessed July 3, 2018 143. LeVine RA. Ethnographic studies of childhood: a historical overview. Am Anthropol. 2007;109(2):247–260 144. Kağitçibaşi Ç. Family, Self, and Human Development Across Cultures: Theory and Applications. 2nd ed. Mahwah, NJ: Lawrence Erlbaum Associates; 2007 145. Dixon S, Tronick E, Keefer C, Brazelton TB. Mother-infant interaction among the Gusii of Kenya. In: Field TM, Sostek AM, Vietze P, Leiderman PH, eds. Culture and Early Interactions. London, United Kingdom: Psychology Press; 1981:149–170 146. Johnson L, Radesky J, Zuckerman B. Cross-cultural parenting: reflections on autonomy and interdependence. Pediatrics. 2013;131(4):631–633 147. LeVine RA. Human parental care: universal goals, cultural strategies, individual behavior. New Dir Child Adolesc Dev. 1988;1988(40):3–12

PGCH_ch14_219-252.indd 249

8/20/18 8:09 AM

250 Part 3: Educational Models in Global Health Settings

148. Schulze PA, Harwood RL, Schoelmerich A. Feeding practices and expectations among middleclass Anglo and Puerto Rican mothers of 12-month-old infants. J Cross Cult Psychol. 2001;32(4): 397–406 149. Ertem I, Krishnamurthy V, Mulaudzi M, et al. The International Guide for Monitoring Child Development (IGMCD): standardization in four countries. Paper presented at: Pediatric Academic Societies 2015; San Diego, CA 150. Palfrey JS, Singer JD, Walker DK, Butler JA. Early identification of children’s special needs: a study in five metropolitan communities. J Pediatr. 1987;111(5):651–659 151. Sices L, Feudtner C, McLaughlin J, Drotar D, Williams M. How do primary care physicians identify young children with developmental delays? A national survey. J Dev Behav Pediatr. 2003;24(6):409–417 152. Glascoe FP. Using parents’ concerns to detect and address developmental and behavioral problems. J Soc Pediatric Nurs. 1999;4(1):24–35 153. Oberklaid F, Baird G, Blair M, Melhuish E, Hall D. Children’s health and development: approaches to early identification and intervention. Arch Dis Child. 2013;98(12):1008–1011 154. Gladstone M, Lancaster GA, Umar E, et al. The Malawi Developmental Assessment Tool (MDAT): the creation, validation, and reliability of a tool to assess child development in rural African settings. PLoS Med. 2010;7(5):e1000273 155. Durkin MS, Wang W, Shrout PE, et al. Evaluating a ten questions screen for childhood disability: reliability and internal structure in different cultures. J Clin Epidemiol. 1995;48(5):657–666 156. Lung FW, Shu BC, Chiang TL, Lin SJ. Efficient developmental screening instrument for 6- and 18-month-old children in the Taiwan Birth Cohort Pilot Study. Acta Paediatr. 2008;97(8): 1093–1098 157. Ertem IO, Dogan DG, Gok CG, et al. A guide for monitoring child development in low- and middle-income countries. Pediatrics. 2008;121(3):e581–e589 158. Rosenbaum P, Gorter JW. The ‘F-words’ in childhood disability: I swear this is how we should think! Child Care Health Dev. 2012;38(4):457–463 159. Halfon N, Houtrow A, Larson K, Newacheck PW. The changing landscape of disability in childhood. Future Child. 2012;22(1):13–42 160. Yousafzai AK, Lynch P, Gladstone M. Moving beyond prevalence studies: screening and interventions for children with disabilities in low-income and middle-income countries. Arch Dis Child. 2014;99(9):840–848 161. Yousafzai AK, Aboud F. Review of implementation processes for integrated nutrition and psychosocial stimulation interventions. Ann N Y Acad Sci. 2014;1308:33–45 162. Engle PL, Fernald LC, Alderman H, et al. Strategies for reducing inequalities and improving developmental outcomes for young children in low-income and middle-income countries. Lancet. 2011;378(9799):1339–1353 163. United Nations Children’s Fund, World Health Organization. Integrating Early Childhood Development (ECD) Activities Into Nutrition Programmes in Emergencies. Why, What and How. New York, NY: United Nations Children’s Fund; 2012. http://www.who.int/mental_health/ emergencies/ecd_note.pdf. Accessed June 22, 2018 164. United Nations Children’s Fund. Care for Child Development Package. New York, NY: United Nations Children’s Fund; 2011. https://www.unicef.org/earlychildhood/index_68195.html. Accessed June 22, 2018 165. Richter LM, Daelmans B, Lombardi J, et al. Investing in the foundation of sustainable development: pathways to scale up for early childhood development. Lancet. 2017;389(10064):103–118 166. Powell C, Grantham-McGregor S. Home visiting of varying frequency and child development. Pediatrics. 1989;84(1):157–164 167. Richter LM, Griesel RD, Barbarin O. Behavioral problems among preschool children in South Africa: a six year longitudinal perspective from birth to age five. In: Singh NN, Leung JP, Singh AN, eds. International Perspectives on Child and Adolescent Mental Health. Vol 1. Kidlington, Oxford: Elsevier Science; 2000:159–182 168. Cooper PJ, Landman M, Tomlinson M, Molteno C, Swartz L, Murray L. Impact of a motherinfant intervention in an indigent peri-urban South African context: pilot study. Br J Psychiatry. 2002;180:76–81

PGCH_ch14_219-252.indd 250

8/20/18 8:09 AM

251 Chapter 14: Child Development: The Next Global Health Frontier

169. Landry SH, Smith KE, Swank PR, Zucker T, Crawford AD, Solari EF. The effects of a responsive parenting intervention on parent-child interactions during shared book reading. Dev Psychol. 2012;48(4):969–986 170. Gardner JM, Walker SP, Powell CA, Grantham-McGregor S. A randomized controlled trial of a home-visiting intervention on cognition and behavior in term low birth weight infants. J Pediatr. 2003;143(5):634–639 171. Cooper PJ, Tomlinson M, Swartz L, et al. Improving quality of mother-infant relationship and infant attachment in socioeconomically deprived community in South Africa: randomised controlled trial. BMJ. 2009;338:b974 172. Yousafzai AK, Rasheed MA, Rizvi A, Armstrong R, Bhutta ZA. Parenting skills and emotional availability: an RCT. Pediatrics. 2015;135(5):e1247–e1257 173. Dweck CS. Mindset: The New Psychology of Success. New York, NY: Ballantine Books; 2006 174. Muenks K, Miele DB, Ramani GB, Stapleton LM, Rowe ML. Parental beliefs about the fixedness of ability. J Appl Dev Psychol. 2015;41:78–89 175. Moorman EA, Pomerantz EM. Ability mindsets influence the quality of mothers’ involvement in children’s learning: an experimental investigation. Dev Psychol. 2010;46(5):1354–1362 176. Walton GM. The new science of wise psychological interventions. Curr Dir Psychol Sci. 2014;23(1): 73–82 177. Kuhl PK, Williams KA, Lacerda F, Stevens KN, Lindblom B. Linguistic experience alters phonetic perception in infants by 6 months of age. Science. 1992;255(5044):606–608 178. Kuhl PK, Andruski JE, Chistovich IA, et al. Cross-language analysis of phonetic units in language addressed to infants. Science. 1997;277(5326):684–686 179. Whitehurst GJ, Lonigan CJ. Child development and emergent literacy. Child Dev. 1998;69(3): 848–872 180. Hart B, Risley TR. Meaningful Differences in the Everyday Experience of Young American Children. Baltimore, MD: Paul H. Brookes Publishing; 1995 181. Hoff E. The specificity of environmental influence: socioeconomic status affects early vocabulary development via maternal speech. Child Dev. 2003;74(5):1368–1378 182. Weisleder A, Fernald A. Talking to children matters: early language experience strengthens processing and builds vocabulary. Psychol Sci. 2013;24(11):2143–2152 183. Duursma E, Augustyn M, Zuckerman B. Reading aloud to children: the evidence. Arch Dis Child. 2008;93(7):554–557 184. Griffin P, Burns MS, Snow CE. Preventing Reading Difficulties in Young Children. Washington, DC: National Academies Press; 1998 185. Sénéchal M, LeFevre JA. Parental involvement in the development of children’s reading skill: a fiveyear longitudinal study. Child Dev. 2002;73(2):445–460 186. Adams MJ. Beginning to Read: Thinking and Learning About Print. Cambridge, MA: Massachusetts Institute of Technology Press; 1990 187. Storch SA, Whitehurst GJ. The role of family and home in the literacy development of children from low-income backgrounds. New Dir Child Adolesc Dev. 2001;(92):53–71; discussion 91–98 188. Ezell HK, Justice LM. Shared Storybook Reading: Building Young Children’s Language and Emergent Literacy Skills. Baltimore, MD: Paul H. Brooks Publishing; 2005 189. Zuckerman B. Promoting early literacy in pediatric practice: twenty years of Reach Out and Read. Pediatrics. 2009;124(6):1660–1665 190. National Research Council, Institute of Medicine. From Neurons to Neighborhoods: The Science of Early Childhood Development. Committee on Integrating the Science of Early Childhood Development. Shonkoff JP, Phillips DA, eds. Washington, DC: National Academies Press; 2000 191. Hutton JS, Horowitz-Kraus T, Mendelsohn AL, DeWitt T, Holland SK; C-MIND Authorship Consortium. Home reading environment and brain activation in preschool children listening to stories. Pediatrics. 2015;136(3):466–478 192. Vally Z, Murray L, Tomlinson M, Cooper PJ. The impact of dialogic book-sharing training on infant language and attention: a randomized controlled trial in a deprived South African community. J Child Psychol Psychiatry. 2015;56(8):865–873 193. Opel A, Ameer SS, Aboud FE. The effect of preschool dialogic reading on vocabulary among rural Bangladeshi children. Int J Educ Res. 2009;48(1):12–20

PGCH_ch14_219-252.indd 251

8/20/18 8:09 AM

252 Part 3: Educational Models in Global Health Settings

194. Valdez-Menchaca MC, Whitehurst GJ. Accelerating language development through picture book reading: a systematic extension to Mexican day care. Dev Psychol. 1992;28(6):1106 195. Wolf M, Gottwald S, Galyean T, Morris R, Breazeal C. The reading brain, global literacy, and the eradication of poverty. Bread Brain Educ Poverty. http://www.academyofsciences.va/content/dam/ accademia/pdf/sv125/sv125-wolf.pdf. Published 2014. Accessed June 22, 2018 196. Wolf M, Gottwald S, Gaylean T, Morris R. Global literacy and socially excluded peoples. Emergenza Esclusi. http://www.casinapioiv.va/content/dam/accademia/pdf/sv123/sv123-wolf.pdf. Published 2013. Accessed June 22, 2018 197. Stein A, Pearson RM, Goodman SH, et al. Effects of perinatal mental disorders on the fetus and child. Lancet. 2014;384(9956):1800–1819 198. Dowd JB, Simanek AM, Aiello AE. Socio-economic status, cortisol and allostatic load: a review of the literature. Int J Epidemiol. 2009;38(5):1297–1309 199. Rahman A, Malik A, Sikander S, Roberts C, Creed F. Cognitive behaviour therapy-based intervention by community health workers for mothers with depression and their infants in rural Pakistan: a cluster-randomised controlled trial. Lancet. 2008;372(9642):902–909 200. Baker-Henningham H, Powell C, Walker S, Grantham-McGregor S. The effect of early stimulation on maternal depression: a cluster randomised controlled trial. Arch Dis Child. 2005;90(12):1230– 1234 201. Rahman A, Surkan PJ, Cayetano CE, Rwagatare P, Dickson KE. Grand challenges: integrating maternal mental health into maternal and child health programmes. PLoS Med. 2013;10(5):e1001442

PGCH_ch14_219-252.indd 252

8/20/18 8:09 AM

PART

4 Models for Global Health Research

PGCH_ch15_253-276.indd 253

8/20/18 8:15 AM

PGCH_ch15_253-276.indd 254

8/20/18 8:15 AM

255

CHAPTER 15

Environmental Hazards and Global Child Health: The Need for Evidence-Based Advocacy Philip J. Landrigan, MD, MSc, FAAP

abstract Children in today’s ever-smaller, more densely populated, tightly interconnected world are surrounded by a complex array of environmental threats to health.1 Because of their unique patterns of exposure and exquisite biological sensitivities, especially during windows of vulnerability in prenatal and early postnatal development, children are extremely vulnerable to environmental hazards.2,3 Even brief, low-level exposures during critical early periods can cause permanent alterations in organ function and result in acute and chronic disease and dysfunction in childhood and across the life span.4 The World Health Organization estimates that 24% of all deaths and 36% of deaths in children are attributable to environmental exposures,5 more deaths than are caused by HIV/AIDS, malaria, and tuberculosis combined.6–8 In the Americas, the Pan American Health Organization estimates that nearly 100,000 children younger than 5 years die annually from physical, chemical, and biological hazards in the environment.9 Children in all countries are exposed to environmental health threats, but the nature and severity of these hazards vary greatly across countries, depending on national income, income distribution, level of development, and national governance.10 More than 90% of the deaths caused by environmental exposures occur in the world’s poorest ­countries6–8—environmental injustice on a global scale.11 In low-income countries, the predominant environmental threats are household air pollution from burning biomass and contaminated drinking water. These hazards are strongly linked to pneumonia, diarrhea, and a wide range of parasitic infestations in children.9,10

PGCH_ch15_253-276.indd 255

8/20/18 8:15 AM

256 Part 4: Models for Global Health Research

In high-income countries that have switched to cleaner fuels and developed safe drinking water supplies, the major environmental threats are ambient air pollution from motor vehicles and factories, toxic chemicals, and pesticides.10,12,13 These exposures are linked to noncommunicable diseases—asthma, birth defects, cancer, and neurodevelopmental disorders.9,10 Toxic chemicals are increasingly important environmental health threats, especially in previously low-income countries now experiencing rapid economic growth and industrialization.10 A major driver is the relocation of chemical manufacturing, recycling, shipbreaking, and other heavy industries to so-called “pollution havens” in low-income countries that largely lack environmental controls and public health infrastructure. Environmental degradation and disease result. The 1984 Bhopal, India, disaster was an early example.14 Other examples include the export to low-income countries of 2 million tons per year of newly mined asbestos15; lead exposure from backyard battery recycling16; mercury contamination from artisanal gold mining17; the global trade in banned pesticides18; and shipment to the world’s lowest-income countries of vast quantities of hazardous and electronic waste (e-waste).19 Climate change is yet another global environmental threat.20 Its effects will magnify in the years ahead as the world becomes warmer, sea levels rise, insect vector ranges expand, and changing weather patterns cause increasingly severe storms, droughts, and malnutrition. Children are the most vulnerable. Diseases of environmental origin in children can be prevented. Pediatricians are trusted advisors, uniquely well qualified to address environmental threats to children’s health. Prevention requires a combination of research to discover the environmental causes of disease coupled with evidence-based advocacy that translates research findings to policies and programs of prevention. Past successful prevention efforts, many of them led by pediatricians, include the removal of lead from paint and gasoline, the banning of highly hazardous pesticides, and reductions in urban air pollution. Future, more effective prevention will require mandatory safety testing of all chemicals in children’s environments, continuing education of pediatricians and health professionals, and enhanced programs for chemical tracking and disease prevention.

PGCH_ch15_253-276.indd 256

8/20/18 8:15 AM

257 Chapter 15: Environmental Hazards and Global Child Health: The Need for Evidence-Based Advocacy

OPERATING PRINCIPLES INCLUDED (SEE PART 1.) 1. Polarization (obstacles to sustainability of efforts) 2. Positive strategies (rigorous, evidence based, ethically sound, teachable, replicable, sustainable) Competencies Addressed: R1, R2, R3, R4 See Chapter 8, Global Health Research Competencies.

Key References Cohen AJ, Brauer M, Burnett R, et al. Estimates and 25-year trends of the global burden of disease attributable to ambient air pollution: an analysis of data from the Global Burden of Diseases Study 2015. Lancet. 2017;389(10082):1907–1918 Landrigan PJ, Fuller R, Acosta NJR, et al. The Lancet Commission on pollution and health. Lancet. 2018;391(10119):462–512 Watts N, Adger WN, Ayeb-Karlsson S, et al. The Lancet Countdown: tracking progress on health and climate change. Lancet. 2017;389(10074):1151–1164

Teaching Points 1 The World Health Organization estimates that 36% of all deaths in children worldwide are caused by harmful exposures in the environment.

2 Children are exquisitely vulnerable to environmental health threats, especially during the 9 months of gestation and in the first years of postnatal life. This vulnerability reflects children’s unique exposures and their great biological sensitivity, especially during early windows of developmental vulnerability.

3 In the past century, patterns of disease in children in industrially developed

countries have changed profoundly. Many, though not all, infectious diseases have been controlled, and new infectious diseases causing substantial morbidity and mortality have arisen. Noncommunicable diseases are increasingly recognized as major threats to health and wellness.

4 Global life expectancy at birth has more than doubled over the past 100 years. This change is termed the epidemiological transition (see Appendix C). Far-reaching changes in the environment have been major drivers of the epidemiological transition.

5 In many of the world’s most impoverished countries, improvements in child health have lagged. Today, countries at different levels of economic development have very different patterns of pediatric disease.

6 In low-income countries, the predominant environmental hazards are household air pollution and contaminated drinking water, which are linked to pneumonia and diarrhea.

PGCH_ch15_253-276.indd 257

8/20/18 8:15 AM

258 Part 4: Models for Global Health Research

7 In rapidly industrializing countries, ambient air pollution from motor vehicles and factories, toxic chemicals, and pesticides are emerging as major health threats to children. These hazards are linked to NCDs—asthma, neurodevelopmental disorders, and birth defects.

8 Climate change is a major, emerging environmental threat to children’s

health. Its health effects are substantial already and will become greater in the years ahead.

9 Great social, ethnic, racial, and economic inequities are evident in the global

distribution of environmental hazards. More than 90% of pollution-related deaths occur in low- and middle-income countries. This represents environmental injustice on a grand scale.

10 Pediatricians in partnership with other stakeholders are uniquely well positioned to lead efforts to protect children against environmental hazards.

Introduction: The Environment and Global Health Environmental pollution is a large, costly, inequitably distributed, and preventable cause of disease and death in countries around the world. The World Health Organization (WHO) estimates that, in 2012, household air pollution caused 4.3 million deaths in persons of all ages, ambient air pollution caused 3.8 million deaths, and unsafe water, poor sanitation, and inadequate hygiene caused 842,000 deaths.6–8 Contaminated dust and soil at active and abandoned mines, smelters, industrial facilities, and hazardous waste sites killed tens of thousands more.21 By comparison, HIV/AIDS causes approximately 1.5 million deaths per year, tuberculosis 1.2 million deaths per year, and malaria fewer than 1 million deaths per year.22 The health effects of pollution fall most heavily on the world’s poor.11 More than 90% of pollution-related deaths occur in low- and middle-income countries.6–8 Children are exquisitely vulnerable to environmental health threats.3

The Changing Global Environment: The Epidemiological Transition In the past 2 centuries, the environments in which children live have changed greatly; in the same time, patterns of pediatric disease have changed profoundly.9,10,23 These changes are playing out on different time scales in different countries depending on countries’ economic status and level of development. Previously, the major diseases of children throughout the world were infectious diseases—pneumonia, dysentery, cholera, diphtheria, typhoid fever, pertussis, and measles. But with substantial decreases in morbidity and mortality due to infectious diseases in high-income and many middle-income countries, child health has improved remarkably. Death rates have decreased by more than 50%. Infant mortality has fallen by 90% and continues to fall. Life expectancy at birth has nearly doubled. In high-income and many middle-income countries, noncommunicable diseases (NCDs) have replaced infectious diseases as the major causes of morbidity and mortality. Low-income countries are also experiencing substantial declines in mortality due to infectious diseases, but death rates due to these disorders remain

PGCH_ch15_253-276.indd 258

8/20/18 8:15 AM

259 Chapter 15: Environmental Hazards and Global Child Health: The Need for Evidence-Based Advocacy

Figure 15-1. The Epidemiological Transition in New York, NY, 1800–1980 Reproduced with permission from Li W, Sebek K, Huynh M, et al. Summary of Vital Statistics, 2015. New York, NY: New York City Department of Health and Mental Hygiene, Bureau of Vital Statistics; 2017.

very high despite the availability of effective vaccines. At the same time, children in high- and middle- to low-income nations are facing proportionally increasing morbidity (and, in some cases, mortality) from NCDs. The emergence of NCDs as a major cause of morbidity and mortality in higher and low- to middle-income nations is termed the epidemiological transition.24 Far-reaching changes in the environment have been major drivers of the epidemiological transition. The United States and Western European countries began their epidemiological transition 150 or more years ago. This is illustrated in Figure 15-1, a graph documenting the epidemiological transition in New York, NY. In New York, the epidemiological transition began in the 1860s, nearly 80 years before the discovery of penicillin, and was marked by a sharp decline in the population mortality rate. The major drivers of that transition were person-made environmental and social changes on a grand scale—the construction of aqueducts and reservoirs that, for the first time, brought safe drinking water to the city; the construction of a sewer system; and the passage of laws and regulations that established minimal standards for decent housing, mandated the removal of dead animals and animal wastes from public streets, and generally improved urban sanitation.25 The consequences were cessation of the major epidemics—cholera, typhus, smallpox, yellow fever—that had previously swept through the city with distressing regularity; declines in infant, child, and maternal mortality; and a near doubling in life expectancy at birth from 40 to 45 years in 1850 to nearly 80 years today. At the same time, the introduction and global application of effective vaccines against many of the world’s greatest causes of childhood morbidity and mortality have played a substantial role in lowering younger-than-5 mortality globally.

PGCH_ch15_253-276.indd 259

8/20/18 8:15 AM

260 Part 4: Models for Global Health Research

Today, different countries around the world, and even different regions within countries, are at various stages in their epidemiological transitions, and patterns of environmental pollution and of pollution-related diseases vary greatly from country to country and even from region to region within countries.23,26,27 Critical factors responsible for these sharp differences include differences in national income, income distribution, population growth, urbanization, extent of industrialization, and quality of national leadership. Economic disparities and disparities based on race, ethnicity, and social class are additional powerful determinants of the pace and nature of national development. Some countries, notably middle-­ income countries with effective central governments and fairly equitable distributions of economic resources, have largely completed their epidemiological transitions. Some are passing through the transition now. And in still other countries, typically the world’s lowest-income and/or most economically inequitable countries, the transition has been delayed or has not even begun, and the ancient infectious diseases still predominate.10 In some countries where social structures and public health programs are unraveling and environments are rapidly deteriorating, populations are actually moving backward through the epidemiological transition, as is evidenced by recent outbreaks of poliovirus in Syria28 and of measles in northern Nigeria.29 Countries currently passing through the epidemiological transition, especially previously poor agrarian but now rapidly industrializing economies, must deal simultaneously with ancient and modern environmental hazards and with epidemics of infectious diseases and NCDs; thus, they are at “double jeopardy” of environmental disease in their children.10

Children’s Environmental Health Today in High-Income Countries Today in high-income countries in the aftermath of the epidemiological transition, and despite HIV/AIDS, tuberculosis, and the ever-present threat of emerging infections, the major diseases of children are NCDs—asthma, neurodevelopmental disorders, birth defects, obesity, diabetes, cardiovascular disease, mental health problems, and pediatric cancer, termed the new pediatric morbidity.30 Incidence and prevalence rates of NCDs are high and, for many, are increasing. ▶▶ Asthma rates have more than doubled since 1980 and become the leading cause of pediatric hospitalization and school absenteeism. In 2016, 8.3% of US children younger than 18 years were living with asthma.31 Asthma rates have risen especially rapidly among children of color in low-income families residing in inner-city communities. ▶▶ Birth defects are now the leading cause of infant death in high-income countries such as the United States.32 Certain birth defects, such as hypospadias33 and gastroschisis,34 appear to have increased substantially in frequency. ▶▶ Neurodevelopmental disorders, including dyslexia, intellectual disability, ­attention-deficit/hyperactivity disorder (ADHD), and autism spectrum disorder, affect 10% to 15% of the 4 million babies born each year in the United States.35 ▶▶ Autism spectrum disorder is now diagnosed in 1 of every 59 American children.35 Attention-deficit/hyperactivity disorder is diagnosed in 14% of American children, two-thirds of whom also have a learning disability.36

PGCH_ch15_253-276.indd 260

8/20/18 8:15 AM

261 Chapter 15: Environmental Hazards and Global Child Health: The Need for Evidence-Based Advocacy

▶▶ Leukemia and brain cancer in children increased in incidence from the 1970s

through the 1990s, despite declining mortality.37 Testicular cancer in young men aged 15 to 30 years has more than doubled in incidence and is occurring at younger ages.37 Cancer is now the second-leading cause of death in American children, surpassed only by injuries.37 ▶▶ Obesity among children has more than tripled in prevalence over the past 20 years. It currently effects 20.5% of children aged 12 to 19 years.38 Its consequence, type 2 diabetes, is occurring earlier in life and at epidemic rates.

Toxic Chemicals and Child Health Toxic chemicals are a problem across the globe. Chemical production has grown dramatically in the past half-century, and children’s exposures to synthetic chemicals have become a focus of great concern in environmental pediatrics worldwide (Figure 15-2). Two-thirds of global chemical and pesticide production now takes place in low- and middle-income countries.39–41 More than 80,000 new synthetic chemicals and pesticides have been invented; approximately 5,000 are now produced in volumes of more than 1 million tons per year.41 Most did not previously exist in nature. The US Environmental Protection Agency (EPA) reports that in 2012, more than 9 trillion pounds of chemicals were manufactured in or imported into the United States.42 Through 2030, global growth in chemical production is projected to continue to grow globally at an annual rate of 3.4%.43 Synthetic chemicals have been incorporated into an enormously wide range of products, including medications, food packaging, clothing, building materials, motor fuels, cleaning products, cosmetics, toys, and baby bottles.44 They have become widely disseminated in the environment and now contaminate air, soil, and water in even the most remote regions of the planet.40 Human exposure to

US Chemical Production, 1947–2007

120 100 80

Production index (100 = year 2002)

60 40 20 0 1945

1955

1965

1975

1985

1995

2005

Figure 15-2. Chemical Production, United States, 1947–2007 Adapted from Department of Obstetrics, Gynecology and Reproductive Sciences, National Center of Excellence in Women’s Health. University of California, San Francisco. Program on Reproductive Health and the Environment. Shaping Our Legacy: Reproductive Health and the Environment. A report on the Summit on Environmental Challenges to Reproductive Health and Fertility. Page 2. September 2008. https://prhe.ucsf. edu/sites/prhe.ucsf.edu/files/shapingourlegacy.pdf. Accessed July 5, 2018.

PGCH_ch15_253-276.indd 261

8/20/18 8:15 AM

262 Part 4: Models for Global Health Research

synthetic chemicals is widespread, as evidenced by data from national surveys in the United States and Europe documenting measurable levels of more than 100 synthetic chemicals in the bodies of virtually all persons on earth,45 including pregnant women.46 Some synthetic chemicals have profoundly benefitted children’s health. Antibiotics have helped control the major infectious diseases. Chemical disinfectants have brought safe water to millions and reduced deaths from dysentery. Chemotherapeutic agents have made possible the treatment of many childhood cancers.44 But synthetic chemicals have also caused great harm and been responsible for tragic episodes of disease, death, and environmental degradation. Many of these episodes have resulted in severe injury to children. A 2-step sequence that has marked many of these tragedies is that first, a new chemical is introduced to the marketplace with great enthusiasm, is incorporated into new products, becomes widely disseminated in the environment, and results in human exposure. Then, belatedly, the chemical is found to have caused harm to human health or to the environment, damage that was neither imagined nor in any way sought prior to the chemical’s introduction.44 Classic examples of synthetic chemicals (including medications) that were initially hailed as beneficial but later found to cause great harm include the lead that was added to paint and gasoline, asbestos, DDT (dichlorodiphenyltrichloroethane), thalidomide, polychlorinated biphenyls (PCBs), diethylstilbestrol, and the ozone-destroying chlorofluorocarbons. A recurrent theme in each of those episodes was that commercial introduction and wide dissemination of the new chemical preceded any systematic effort to assess its potential toxicity. Especially absent were advance efforts to examine possible effects on children’s health or potential to disrupt early development.44,47

Failure to Test Chemicals for Toxicity

A root cause of these tragedies has been systematic failure to conduct premarket safety testing or systematic evaluations of the potential toxicity of new synthetic chemicals before they are introduced to commerce.42 The consequences of this widespread failure to test chemicals are that ▶▶ Information on potential toxicity is publicly available for only about half of the most widely used synthetic chemicals. ▶▶ Information on developmental toxicity or capacity to harm infants and ­children is available for fewer than 20% of the most widely used synthetic chemicals.42 Failure to test chemicals for potential toxicity reflects a grave lapse of stewardship. It puts children at risk daily of exposure to chemicals whose potential for hazard is virtually unknown. It reflects a combination of industry’s unwillingness to take responsibility for its products coupled with failure of government. In the United States, this governmental failure reflects failure of the Toxic Substances Control Act of 1976 (TSCA).48 The TSCA was intended at the time of its passage to be pioneering legislation that would require premarket evaluation of all new chemicals for potential toxicity. It was also intended to require retroactive testing

PGCH_ch15_253-276.indd 262

8/20/18 8:15 AM

263 Chapter 15: Environmental Hazards and Global Child Health: The Need for Evidence-Based Advocacy

of industrial chemicals already in commerce. The TSCA never fulfilled those noble intentions. A particularly egregious lapse was an early decision to grandfather in 62,000 chemicals already on the market and, thus, to require no toxicity testing of them. These chemicals were simply presumed safe and allowed to remain in commerce. The component of the EPA responsible for enforcing the TSCA has been chronically underfunded, understaffed, and overwhelmed by the sheer number of new chemicals and technologies that come before it. By default, new chemicals have simply been presumed by the EPA to be safe unless there was overwhelming evidence of their potential to cause harm.42

Toxic Chemicals and Disease in Children Evidence is strong and continuing to build that toxic chemicals in the environment are important causes of disease in children. This understanding first arose in the early years of the 20th century and had its origins in seminal clinical ­observations and epidemiologic studies, many of them undertaken by astute ­clinician-scientists. Typically, those early episodes involved high-dose exposures that produced obvious illness, such as high-dose pediatric exposures to lead from ingestion of lead-based paint by children in Australia49 and massive prenatal exposure to methylmercury at Minamata, Japan.50

Subclinical Toxicity

In more recent years, as research in children’s environmental health has expanded, it has come to be understood that the consequences of toxic exposures are not limited to clinically obvious illnesses caused by massive acute exposures. Environmental exposures in early life are now recognized to be able to cause a wide range of adverse outcomes. Some are clinically evident, but others are subtler, can be discerned only through special testing, and, hence, are termed subclinical toxicity (see Appendix C).51 The underlying concept is that there is a dose-dependent continuum of toxicity in which clinically obvious effects have their asymptomatic counterparts. The concept of subclinical toxicity traces its origins to studies of asymptomatic lead poisoning.52,53 It has now expanded to include the effects in numerous organ systems of exposures to a wide range of toxic chemicals. While subclinical effects may be small at the individual level, the aggregate effects at a population level can have far-reaching social and economic consequences that undermine the economic productivity, creativity and sustainability of entire ­societies.54

Children’s Unique Vulnerability to Toxic Chemicals A key event in heightening awareness among policy makers of children’s great sensitivity to toxic chemicals in the environment was publication in 1993 of a report by the National Research Council, Pesticides in the Diets of Infants and Children.3 This report identified 4 fundamental differences between children and adults that contribute to children’s susceptibility. ▶▶ Children have proportionately greater exposures to chemicals in the environment than adults. This reflects children’s greater intake per kilogram of food,

PGCH_ch15_253-276.indd 263

8/20/18 8:15 AM

264 Part 4: Models for Global Health Research

water, and air coupled with their unique age-related behaviors (ie, their play on the floor and oral exploratory behavior). ▶▶ Children’s metabolic pathways, especially in the first months after birth, are immature. In many instances, children are less able than adults to detoxify and excrete toxic compounds. As a result, many toxic chemicals have prolonged half-lives in children’s bodies.55 ▶▶ Children are undergoing rapid growth and development. Early development creates windows of vulnerability—periods of heightened sensitivity to toxic chemicals that have no counterpart in adult life. Recognition of this exquisite vulnerability has fostered understanding that in early development, the timing of exposure is critically important. Exposures in early life to even minute doses of toxic chemicals—levels that would have no adverse effect in an adult—can disrupt organ formation in, for example, the brain or endocrine system and cause functional impairments that last a lifetime.56,57 ▶▶ Because children have more years of future life than adults, they have more time to develop chronic diseases that may be initiated by early exposures.58

Recent Advances in Knowledge of the Effects of Toxic Chemicals on Children’s Health Epidemiologic studies—in particular, prospective epidemiological birth cohort studies that enroll women in pregnancy, measure environmental exposures during pregnancy as they actually occur, and then follow the children longitudinally with carefully structured developmental examinations at scheduled ­intervals—have become powerful engines for the scientific discovery of associations between early life exposures and disease. A great strength of the prospective study design is that it permits unbiased assessment of environmental exposures months or years before the onset of disease or dysfunction. The prospective design thus reduces recall bias and is crucial for studies that require accurate assessments of exposures in pregnancy.59 Prospective epidemiologic studies are especially powerful when they incorporate biomarkers of exposure, individual susceptibility, and the precursor states of disease—a cutting-edge approach termed molecular epidemiology (see Appendix C).60 Incorporation of genetic and epigenetic markers into epidemiologic studies creates opportunities to explore the role of gene-environment interactions and epigenetic alterations in disease causation.61 With increasing deployment of prospective biomarker-based epidemiologic studies, the pace of scientific discovery in environmental pediatrics has accelerated. Examples of associations between environmental exposures and disease discovered in recent years through epidemiological research include ▶▶ Rates of asthma are increased in children exposed to urban air pollution.62 ▶▶ Risk of sudden death is increased in infants exposed to fine particulate air pollution.63 ▶▶ Prenatal exposure to PCBs is linked to reduction in children’s intelligence and alterations in behavior.64

PGCH_ch15_253-276.indd 264

8/20/18 8:15 AM

265 Chapter 15: Environmental Hazards and Global Child Health: The Need for Evidence-Based Advocacy

▶▶ Prenatal exposure to the organophosphate insecticide, chlorpyrifos, is associ-

ated with reduced head circumference at birth, developmental delays, and cognitive impairments, as well as with pervasive developmental disorder, a form of autism spectrum disorder.65–70 ▶▶ Baby boys exposed in utero to phthalates, a widely used plasticizer chemical, appear to be at increased risk of developing behavioral abnormalities resembling ADHD.71 ▶▶ Prenatal exposure to phthalates has been linked to shortening of the anogenital distance in baby boys, a finding indicative of feminization.72 ▶▶ Prenatal exposure to bisphenol A, a chemical used in manufacture of polycarbonate plastics, is linked to behavioral abnormalities.73 ▶▶ Prenatal exposure to brominated flame retardants has been linked to cognitive impairment.74 ▶▶ Prenatal exposures to arsenic and manganese are linked to neurodevelopmental impairment.75,76 ▶▶ Prenatal exposures to the perfluorinated chemicals, perfluorooctanoate and perfluorooctanoate sulfonate, have been linked to decreased birth weight and reduced head circumference in newborns.77 A major unanswered question is whether there exist still other unrecognized diseases and disabilities caused by synthetic chemicals whose toxicity has not been assessed. The absence of information about the possible effects on children’s health of untested synthetic chemicals is cause for great concern and is the single major impediment to prevention of diseases in children caused by toxic chemicals.42,54 Unless studies are conducted to specifically seek ill effects associated with exposures to untested chemicals, subclinical dysfunction caused by them can go unrecognized for many years. The “silent epidemic” of childhood lead poisoning is a case in point. Millions of American children were exposed to excessive levels of lead from the 1940s to the 1970s when more than 100,000 tons of lead was added each year to gasoline and subsequently discharged into the environment through automotive exhaust, causing widespread contamination in cities and along major roadways. Many thousands of children suffered unrecognized brain injury from the resulting environmental pollution before sufficient evidence could be marshaled to mandate removing lead from gasoline and household paint.42 The risk of lead poisoning through drinking water carried by old pipes containing lead has emerged as a major concern in the United States, dramatically confirmed by the crisis identified in Flint, MI.78

Toxic Chemicals and Child Health in Low- and Middle-Income Countries Production and use of synthetic chemicals were initially concentrated in high-­ income countries. This pattern reflects the origins of the chemical manufacturing industry in Western Europe in the late 19th and early 20th centuries and its spread in the 20th century to North America, Japan, and Australia.

PGCH_ch15_253-276.indd 265

8/20/18 8:15 AM

266 Part 4: Models for Global Health Research

In recent decades, with globalization of trade, international spread of the Western lifestyle, and increasing globalization of the chemical manufacturing industry, toxic chemicals, highly hazardous pesticides, and chemical wastes that previously were found only in high-income countries have been infiltrating lowand middle-income countries with ever-increasing rapidity.79,80 At the same time, the chemical manufacturing industry is increasingly relocating to low- and middle-income countries, to so-called “pollution havens” where labor costs are low, public health infrastructure is weak, and environmental protections are few.81–84 Chemical and pesticide pollution are increasing in low- and middle-­ income countries, and hazardous wastes, including electronic waste, are accumulating there.19,85 Pollution-related NCDs are becoming epidemic in countries where these diseases were previously seldom seen.13,86–88 The new reality in global health is that NCDs are becoming a major problem in all countries around the world,87,88 and the once very separate patterns of disease in low-, middle-, and high-income countries are converging. Globally, we have often failed to learn from past mistakes of high-income countries and have allowed the profit motive to dominate even with known toxic environmental effects of industry decisions. In low- and middle-income countries that are undergoing rapid industrialization, high risk of NCDs results in a “double burden” of disease, adding this new threat to that posed already by traditional problems such as infectious diseases, inadequate clean drinking water, and poor nutrition.23 Tragic episodes of occupational and environmental exposure to toxic chemicals have resulted from the movement of the chemical industry and other polluting industries to low- and middle-income countries and have caused great damage. These include ▶▶ The 1984 tragedy in Bhopal, India, where hundreds of persons died and tens of thousands suffered toxic injury following the explosive release of methyl isocyanate from a pesticide manufacturing plant14 ▶▶ The export of more than 2 million tons of new asbestos each year to poor countries,15 which will result in epidemics of lung cancer and malignant mesothelioma that will extend over much of the next century ▶▶ The sale and widespread use in low-income countries of highly toxic pesticides that are banned in Western Europe and the United States18 ▶▶ The shipment into poor countries of 45 million tons per year of e-waste19 ▶▶ Informal recycling of car batteries for lead scrap in third world megacities (see Appendix C)16 ▶▶ Enormous releases of mercury to the environment from artisanal gold mining17 ▶▶ The massive chemical explosion in Tianjin, China Further details of several of these case studies are as follows: ▶▶ Asbestos. Global consumption of asbestos has declined over the past 25 years as a steadily increasing number of countries have recognized the health hazards and taken legal action to restrict or ban asbestos use. The use of asbestos has been virtually eliminated in most industrially developed countries.15

PGCH_ch15_253-276.indd 266

8/20/18 8:15 AM

267 Chapter 15: Environmental Hazards and Global Child Health: The Need for Evidence-Based Advocacy

Despite this decline, asbestos use has not been eliminated, and current annual global consumption has remained for a number of years at about 2 million tons. Virtually all this asbestos is used in low-, middle-, or upper-­ middle–income countries, where use of asbestos is actually increasing.89 Most of the asbestos used in low- and middle-income countries is consumed in the form of asbestos cement and pipes for roof tiles and roofing panels, wallboard, and domestic and industrial water tanks.15,90 These uses can result in asbestos exposures to workers but also in exposures to women and children in communities that are placed at risk of exposure to asbestos dust during local construction projects and again when asbestos tiles and pipes erode or break, thus liberating asbestos fibers to the local environment. ▶▶ Mercury. Artisanal gold mining uses mercury to remove gold from ore and is a major source of mercury contamination, especially in low- and middle-income countries.17 Occupational and para-occupational exposures to metallic mercury, including exposures to children, are extensive in artisanal gold mining, and neither preventive nor protective measures are regularly used.91,92 Formation of highly neurotoxic methyl mercury from metallic mercury that enters streams and rivers is a further hazardous consequence of artisanal gold mining.93 ▶▶ Electrical and electronic waste. E-waste disposal sites represent a relatively new and rapidly growing type of hazardous waste site in countries around the world.19,84 More than 45 million tons of e-waste was generated globally in 2012,19 and this number is expected to rise in coming years. Significant amounts of e-waste are exported from high-income countries to low, middle-, and upper-middle–income countries, where recycling of valuable compounds from e-waste, such as copper and gold, has evolved into an important business, predominantly in the informal sector.94 E-waste (defined as any refuse created by discarded electronic devices, including their components and products used to produce them) contains a vast number of hazardous chemicals, including lead, cadmium, mercury, nickel, barium, and lithium, as well as persistent organic pollutants (POPs), such as PCBs and brominated flame retardants. Unsafe recycling activities, such as open burning and acid leaching of e-waste, produce toxic combustion products including dioxin-like PCBs and polychlorinated dibenzo-dioxins and dibenzo-furans.95 E-waste poses significant health risks to children, especially child workers.96 Children may also be confronted with hazardous substances through take-home exposures and home-based e-recycling workshops. Children at e-waste sites have been reported to display elevated levels of multiple toxic chemicals, including lead and nickel.97 These exposures are associated with a range of adverse health effects, including injury to children’s immune, cardiovascular, gastrointestinal, renal, endocrine, and hematological systems; adverse birth outcomes, such as stillbirth and lower Apgar scores; reduced pulmonary function; effects on child physical growth; and altered neurobehavioral development.98

PGCH_ch15_253-276.indd 267

8/20/18 8:15 AM

268 Part 4: Models for Global Health Research

Global Climate Change and Child Health Climate change is yet another global environmental threat to health.20,99 Children are highly vulnerable to the effects of climate change. Components of climate change that will directly affect children’s health are increased temperatures, increasing frequency and severity of weather extremes, and sea level rise. Effects will be more serious among children in low-income families in the world’s poorest countries.100 The effects of climate change on children’s health may be expected to become greater in the years ahead as the world becomes warmer, sea levels rise, geographic ranges of insect vectors carrying malaria and dengue expand, and changing weather patterns cause increasingly severe storms, droughts, and malnutrition, which, in turn, lead to forced migration and war. Global climate change could further exacerbate health risks from toxic ­environmental exposures, especially in low- and middle-income countries, by increasing concentrations of many chemicals in water, air, and sediment,101 as well as by imposing additional stress to individuals’ immune, endocrine, and neurological systems that may leave some even more sensitive to the pollutants they encounter.102

Preventing Diseases in Children Caused by Exposures to Polluted Air, Soil, and Water Diseases in children caused by toxic exposures in the environment can be prevented. These diseases are the result of human activity and, therefore, can be avoided by modification of that activity. Scientific discovery of causal associations between early life environmental exposures and disease is an essential prerequisite to prevention of these diseases. Examples of previous discoveries of environmental causation that have translated into evidence-based prevention programs and yielded great gains for child health are ▶▶ Reductions in alcohol and tobacco intake during pregnancy following ­recognition of the hazards associated with smoking and drinking during ­pregnancy103,104 ▶▶ Reductions in tobacco smoke exposure in the home and public spaces following implementation of smoking cessation interventions and public health laws prohibiting smoking in public places to mitigate the negative health effects of environmental tobacco smoke105–108 ▶▶ Minimization during pregnancy of diagnostic radiographs following recognition of the increased risk of childhood leukemia following exposure in utero to ionizing radiation109 ▶▶ Removal of lead from gasoline, which resulted in a 90% reduction in blood lead levels and subsequent population-wide increase in children’s mean ­intelligence110 ▶▶ A Congressionally mandated ban on production of PCBs, which led to reduction in the number of children with PCB-induced losses in intelligence111 ▶▶ Elimination of residential uses of neurotoxic organophosphate pesticides, which led to reductions in the number of babies with low birth weight and small head circumference112

PGCH_ch15_253-276.indd 268

8/20/18 8:15 AM

269 Chapter 15: Environmental Hazards and Global Child Health: The Need for Evidence-Based Advocacy

▶▶ Reductions in air pollution driven by passage of the Clean Air Act Amend-

ments of 1990, leading to substantial reductions in infant mortality and cardiorespiratory disease in American children and adults113 These successes offer guidance for future work by pediatricians in countries around the world.

Future Needs to Protect Children’s Health Against Environmental Hazards Continuing protection of children against environmental threats to health will require action on several levels. ▶▶ Legally mandated toxicity testing of chemicals. To better defend children against the unforeseen consequences of exposures to toxic chemicals and to avoid repetition of tragedies past, the United States and other countries need to adopt new national frameworks for responsible chemical stewardship. These new frameworks need to be based on prudence and precaution. They must be designed explicitly to protect children. They need to mandate safety testing of chemicals and pesticides already in commerce using state-of-the-art testing technology,114,115 with prioritization of those chemicals in widest use. They also need to include legally mandated premarket testing of new chemicals before these chemicals enter markets. Most fundamentally, new national frameworks for responsible chemical stewardship must overturn the dangerous and outdated assumption that new chemicals pose no hazards to children’s health until they proven beyond all doubt to cause harm.42 A model approach to a health-based chemical policy can be found in the European Union Registration, Evaluation, Authorisation and Restriction of Chemicals (REACH) legislation, enacted in 2007.116 This legislation places the responsibility on industry to generate substantial amounts of data on potential risks of commercial chemicals and to register this information in a central database that is housed in the European Chemicals Agency in Helsinki, Finland. REACH requires new technologies to be evaluated and proven safe before they are placed on the market. The extent of required testing depends on volume of chemical production; high-volume chemicals intended for consumer products will require closer scrutiny than low-volume materials. Assessment of toxicity must be followed by governmental regulation and market intervention. Voluntary controls have proven to be of little value.117 ▶▶ Need to establish hazard and disease tracking systems. Countries need to establish programs for tracking imports of hazardous chemicals, mapping sources of environmental pollution, monitoring pesticide use, and tracking chemical releases to the environment.118 ▶▶ International chemical controls. International agencies need to continue to enforce the global conventions and treaties that control the release of toxic chemicals into the Earth’s environment and regulate the movement of hazardous materials in international trade, especially the shipment of these materials into low- and middle-income countries.119 These include the Montreal Protocol on Substances That Deplete the Ozone Layer controlling the release to the

PGCH_ch15_253-276.indd 269

8/20/18 8:15 AM

270 Part 4: Models for Global Health Research

atmosphere of chemicals that destroy stratospheric ozone120; the Stockholm Convention on Persistent Organic Pollutants controlling the manufacture and environmental release of POPs121; the Basel Convention on the Control of Transboundary Movements of Hazardous Wastes and Their Disposal regulating the international shipment of hazardous wastes122; the Rotterdam Convention, which mandates that hazardous substances can be shipped from one country into another only if the receiving country has given prior informed consent123; and, most recently, the Minamata Convention on Mercury, a global, legally binding treaty to prevent environmental releases of mercury.17,50 ▶▶ Epidemiological research. To protect children against environmental hazards, the pediatric community must continue to conduct high-quality, transdisciplinary research to seek the specific, potentially preventable causes of diseases of environmental origin in children.59 Large-scale, prospective epidemiological birth cohort studies are especially important. ▶▶ The “alert clinician.” Pediatric practitioners and other frontline health professionals are a critical line of defense against the unanticipated hazards of chemicals old and new. Regardless of how long a chemical has been on the market or how much or little it has been tested for safety and toxicity, the possibility will always remain that unforeseen, previously undetected toxic effects will become evident only after the chemical has been widely disseminated and millions of children have been exposed. Clinical suspicion is especially important when dealing with immigrant children and babies adopted from overseas because these children may have been exposed to hazards not commonly seen in the United States and may present with patterns of illness not previously seen in the United States. Collaboration with adult medicine colleagues can also be an important source of information on toxic exposure patterns and a more familycentered approach to prevention and early identification of such exposure. The late Dr Robert Miller, the father of environmental pediatrics, taught us that every pediatrician must be an alert clinician, ever open to the possibility of discovering new diseases in children caused by toxic exposures in the environment.124 Dr Miller considered diagnostic vigilance an essential component of primary care pediatrics. Examples of diseases of environmental origin first documented by alert clinicians and cited by Dr Miller include phocomelia in babies exposed to thalidomide, adenocarcinoma of the vagina in girls exposed in utero to diethylstilbestrol, and microcephaly in babies exposed in utero to ionizing radiation. Recognition of these sentinel events by astute clinicians was, in every case, a key to disease prevention. ▶▶ Pediatricians as advocates. Pediatricians must be willing to translate their clinical findings and research to the policy arena and to become evidence-based advocates who argue the medical, moral, and societal need for programs and policies to protect children against environmental hazards. Many past successful prevention efforts have been led by pediatricians and include the removal of

PGCH_ch15_253-276.indd 270

8/20/18 8:15 AM

271 Chapter 15: Environmental Hazards and Global Child Health: The Need for Evidence-Based Advocacy

lead from paint and gasoline, the banning of highly hazardous pesticides, and reductions in urban air pollution. Now and in the future, pediatricians are an important force for the protection of children’s health. ▶▶ Public engagement that yields an informed population, willing to influence public policy, is an essential ingredient that has the potential to lead to action and proactive, rather than reactive, interventions.

References 1. Landrigan PJ, Etzel RA, eds. Textbook of Children’s Environmental Health. London, United Kingdom: Oxford University Press; 2014 2. Hubel DH, Wiesel TN. Brain mechanisms of vision. Sci Am. 1979;241(3):150–162 3. National Research Council. Pesticides in the Diets of Infants and Children. Washington, DC: National Academies Press; 1993 4. Barker DJ. The developmental origins of adult disease. J Am Coll Nutr. 2004;23(6 Suppl):588S–595S 5. Prüss-Ustün A, Corvalán C. How much disease burden can be prevented by environmental interventions? Epidemiology. 2007;18(1):167–178 6. World Health Organization. Household air pollution and health. http://www.who.int/en/ news-room/fact-sheets/detail/household-air-pollution-and-health. Updated May 2018. Accessed July 11, 2018 7. World Health Organization. Mortality and burden of disease from ambient air pollution. Situation and trends. http://www.who.int/gho/phe/outdoor_air_pollution/burden_text/en. Accessed June 26, 2018 8. World Health Organization. Preventing Diarrhoea Through Better Water, Sanitation and Hygiene: Exposures and Impacts in Low- and Middle-Income Countries. Geneva, Switzerland: World Health Organization; 2014. http://apps.who.int/iris/bitstream/handle/10665/150112/9789241564823_ eng.pdf;jsessionid553BC1D4625DAC735254AB829CF2E631E?sequence51. Accessed June 26, 2018 9. Pan American Health Organization. The Atlas of Children’s Health and Environment in the Americas. Washington, DC: Pan American Health Organization; 2011. https://www.paho.org/hq/ dmdocuments/2012/Children-Health-Environment-Atlas-ENG-web.pdf. Accessed June 26, 2018 10. Laborde A, Tomasina F, Bianchi F, et al. Children’s health in Latin America: the influence of environmental exposures. Environ Health Perspect. 2015;123(3):201–209 11. Encyclical letter Laudato Sí of the Holy Father Francis on care for our common home. http:// w2.vatican.va/content/francesco/en/encyclicals/documents/papa-francesco_20150524_ enciclica-laudato-si.html. Accessed June 26, 2016 12. Barreto ML. The globalization of epidemiology: critical thoughts from Latin America. Int J Epidemiol. 2004;33(5):1132–1137 13. De Maio FG. Understanding chronic non-communicable diseases in Latin America: towards an equity-based research agenda. Global Health. 2011;7:36 14. Dhara VR, Dhara R, Acquilla SD, Cullinan P. Personal exposure and long-term health effects in survivors of the union carbide disaster at Bhopal. Environ Health Perspect. 2002;110(5):487–500 15. Frank AL, Joshi TK. The global spread of asbestos. Ann Glob Health. 2014;80(4):257–262 16. Haefliger P, Mathieu-Nolf M, Lociciro S, et al. Mass lead intoxication from informal used lead-acid battery recycling in Dakar, Senegal. Environ Health Perspect. 2009;117(10):1535–1540 17. Wade L. Mercury pollution. Gold’s dark side. Science. 2013;347(6153):1448–1449 18. Food and Agriculture Organization of the United Nations. Prevention and disposal of obsolete pesticides. http://www.fao.org/agriculture/crops/obsolete-pesticides/why-problem/pesticidebans/en. Accessed June 26, 2018

PGCH_ch15_253-276.indd 271

8/20/18 8:15 AM

272 Part 4: Models for Global Health Research

19. Grant K, Goldizen FC, Sly PD, et al. 2014. Health consequences of exposure to e-waste: a systematic review. Lancet Glob Health. 2013;1(6):e350–e361 20. United Nations Children’s Fund Office of Research. The Challenges of Climate Change: Children on the Front Line. Florence, Italy: United Nations Children’s Fund Office of Research; 2014. https://www.unicef-irc.org/publications/pdf/ccc_final_2014.pdf. Accessed June 26, 2018 21. Chatham-Stephens K, Caravanos J, Ericson B, et al. Burden of disease from toxic waste sites in India, Indonesia, and the Philippines in 2010. Environ Health Perspect. 2013;121(7):791–796 22. World Health Organization. Global Health Observatory (GHO) data. http://www.who.int/gho/en. Accessed July 3, 2018 23. Pronczuk J, Bruné MN, Gore F. Children’s environmental health in developing countries. In: Nriagu JO, Kacew S, Kawamoto T, Patz JA, Rennie DM, eds. Encyclopedia of Environmental Health. Amsterdam, Netherlands: Elsevier BV; 2011:601–610. http://dx.doi.org/10.1016/B978-0444-52272-6.00008-8. Accessed June 26, 2018 24. Omran AR. The epidemiologic transition. A theory of the epidemiology of population change. Milbank Mem Fund Q. 1971;49(4):509–538 25. Halliday S. The Great Stink of London: Sir Joseph Bazalgette and the Cleansing of the Victorian Metropolis. London, United Kingdom: Sutton Publishing; 1999 26. Landrigan PJ, Fuller R, Acosta NJR, et al. The Lancet Commission on pollution and health. Lancet. 2018;391(10119):462–512 27. Landrigan PJ, Sly JL, Ruchirawat M, et al. Health consequences of environmental exposures: changing global patterns of exposure and disease. Ann Glob Health. 2016;82(1):10–19 28. Branswell H. Polio outbreak is reported in Syria, WHO says. STAT. http://www.statnews.com/ 2017/06/08/polio-outbreak-syria-who. Published June 8, 2017. Accessed June 26, 2018 29. Smith S, Cohn E. Two measles outbreaks kill over 40 children in Nigeria. The Disease Daily. http://www.healthmap.org/site/diseasedaily/article/two-measles-outbreaks-kill-over-40-childrennigeria-3516. Published March 5, 2016. Accessed June 26, 2018 30. Haggerty R, Roghmann KJ, Pless IB. Child Health and the Community. 2nd ed. London, United Kingdom: Routledge; 1992 31. Centers for Disease Control and Prevention National Center for Health Statistics. Asthma. https:// www.cdc.gov/nchs/fastats/asthma.htm. Updated March 31, 2017. Accessed March 27, 2018 32. Centers for Disease Control and Prevention. Data and Statistics Web site. Specific birth defects. https://www.cdc.gov/ncbddd/birthdefects/data.html. Accessed June 30, 2018 33. Paulozzi LJ, Erickson JD, Jackson RJ. Hypospadias trends in two US surveillance systems. Pediatrics. 1997;100(5):831–834 34. Vu LT, Nobuhara KK, Laurent C, Shaw GM. Increasing prevalence of gastroschisis: populationbased study in California. J Pediatr. 2008;152(6):807–811 35. Centers for Disease Control and Prevention. Autism Spectrum Disorder (ASD) Web site. https:// www.cdc.gov/ncbddd/autism/data.html. Accessed July 18, 2018 36. Pastor PN, Reuben CA. Diagnosed attention deficit hyperactivity disorder and learning disability: United States, 2004–2006. Vital Health Stat 10. 2008;(237):1–14 37. National Cancer Institute Surveillance, Epidemiology, and End Results Program. SEER is an authoritative source for cancer statistics in the United States. http://seer.cancer.gov. Accessed June 26, 2018 38. Centers for Disease Control and Prevention. Overweight & obesity. http://www.cdc.gov/obesity. Updated November 29, 2017. Accessed July 3, 2018 39. World Health Organization. Children and chemicals: children’s health and the environment. WHO training package for the health sector. http://www.who.int/ceh/capacity/chemicals.pdf. Updated October 2011. Accessed June 26, 2018 40. Organisation for Economic Co-operation and Development. 40 Years of Chemical Safety at the OECD: Planning for the Next Decade. Paris, France: Organisation for Economic Co-operation and Development; 2011. http://www.oecd.org/env/ehs/48151299.pdf. Accessed June 26, 2018 41. US Environmental Protection Agency. Chemical Snapshot Fact Sheet. EPA Publication 740K13003. https://19january2017snapshot.epa.gov/sites/production/files/2014-11/documents/2nd_cdr_ snapshot_5_19_14.pdf. Published June 2014. Accessed June 26, 2018

PGCH_ch15_253-276.indd 272

8/20/18 8:15 AM

273 Chapter 15: Environmental Hazards and Global Child Health: The Need for Evidence-Based Advocacy

42. Landrigan PJ, Goldman LR. Children’s vulnerability to toxic chemicals: a challenge and opportunity to strengthen health and environmental policy. Health Aff (Millwood). 2011;30(5):842–850 43. World Health Organization, United Nations Environment Programme. State of the Science of Endocrine Disrupting Chemicals–2012. Bergman Å, Heindel JJ, Jobling S, Kidd KA, Zoeller RT, eds. Geneva, Switzerland: World Health Organization; 2013. http://www.who.int/ceh/ publications/endocrine/en. Accessed June 26, 2018 44. American Academy of Pediatrics Council on Environmental Health. Emerging technologies and materials. In: Etzel RA, ed. Pediatric Environmental Health. 3rd ed. Elk Grove Village, IL: American Academy of Pediatrics; 2012:749–755 45. Centers for Disease Control and Prevention. National Report on Human Exposure to Environmental Chemicals. Updated Tables, March 2018. http://www.cdc.gov/exposurereport. Updated May 2, 2018. Accessed July 3, 2018 46. Woodruff TJ, Zota AR, Schwartz JM. Environmental chemicals in pregnant women in the United States: NHANES 2003-2004. Environ Health Perspect. 2011;119(6):878–885 47. Laraque D, Trasande L. Lead poisoning: successes and 21st century challenges. Pediatr Rev. 2005;26(12):435–443 48. Toxic Substances Control, 15 USC §2601–2625 (Suppl 3) (1976). Library of Congress Web site. https://www.loc.gov/item/uscode1976-021015053. Accessed July 30, 2018 49. Gibson JL. A plea for painted railings and painted walls of rooms as the source of lead poisoning amongst Queensland children. 1904. Public Health Rep. 2005;120(3):301–304 50. Harada M. Congenital Minamata disease: intrauterine methylmercury poisoning. Teratology. 1978;18(2):285–288 51. Landrigan PJ. Toxicity of lead at low dose. Br J Ind Med. 1989;46(9):593–596 52. Landrigan PJ, Whitworth RH, Baloh RW, Staehling NW, Barthel WF, Rosenblum BF. Neuropsychological dysfunction in children with chronic low-level lead absorption. Lancet. 1975;1(7909):708–712 53. Needleman HL, Gunnoe C, Leviton A, et al. Deficits in psychologic and classroom performance of children with elevated dentine lead levels. N Engl J Med. 1979;300(13):689–695 54. Grandjean P, Landrigan PJ. Neurobehavioural effects of developmental toxicity. Lancet Neurol. 2014;13(3):330–338 55. Atterberry TT, Burnett WT, Chambers JE. Age-related differences in parathion and chlorpyrifos toxicity in male rats: target and nontarget esterase sensitivity and cytochrome P450-mediated metabolism. Toxicol Appl Pharmacol. 1997;147(2):411–418 56. Rodier PM. Developing brain as a target of toxicity. Environ Health Perspect. 1995;103(suppl 6): 73–76 57. Diamanti-Kandarakis E, Bourguignon JP, Giudice LC, et al. Endocrine-disrupting chemicals: an Endocrine Society scientific statement. Endocr Rev. 2009;30(4):293–342 58. Landrigan PJ, Sonawane B, Butler RN, Trasande L, Callan R, Droller D. Early environmental origins of neurodegenerative disease in later life. Environ Health Perspect. 2005;113(9):1230–1233 59. Landrigan PJ, Trasande L, Thorpe LE, et al. The National Children’s Study: a 21-year prospective study of 100,000 American children. Pediatrics. 2006;118(5):2173–2186 60. Perera FP, Weinstein IB. Molecular epidemiology: recent advances and future directions. Carcinogenesis. 2000;21(3):517–524 61. Hunter DJ. Gene-environment interactions in human diseases. Nat Rev Genet. 2005;6(4):287–298 62. Gauderman WJ, Avol E, Gilliland F, et al. The effect of air pollution on lung development from 10 to 18 years of age. N Eng J Med. 2004;351(11):1057–1067 63. Woodruff TJ, Darrow LA, Parker JD. Air pollution and postneonatal infant mortality in the United States, 1999-2002. Environ Health Perspect. 2008;116(1):110–115 64. Jacobson JL, Jacobson SW. Intellectual impairment in children exposed to polychlorinated biphenyls in utero. N Engl J Med. 1996;335(11):783–789 65. Engel SM, Berkowitz GS, Barr DB, et al. Prenatal organophosphate metabolite and organochlorine levels and performance on the Brazelton Neonatal Behavioral Assessment Scale in a multiethnic pregnancy cohort. Am J Epidemiol. 2007;165(12):1397–1404

PGCH_ch15_253-276.indd 273

8/20/18 8:15 AM

274 Part 4: Models for Global Health Research

66. Eskenazi B, Marks AR, Bradman A, et al. Organophosphate pesticide exposure and neurodevelopment in young Mexican-American children. Environ Health Perspect. 2007;115(5):792–798 67. Engel SM, Wetmur J, Chen J, et al. Prenatal exposure to organophosphates, paraoxonase 1, and cognitive development in childhood. Environ Health Perspect. 2011;119(8):1182–1188 68. Rauh V, Arunajadai S, Horton M, et al. Seven-year neurodevelopmental scores and prenatal exposure to chlorpyrifos, a common agricultural pesticide. Environ Health Perspect. 2011;119(8):1196–1201 69. Bouchard MF, Chevrier J, Harley KG, et al. Prenatal exposure to organophosphate pesticides and IQ in 7-year-old children. Environ Health Perspect. 2011;119(8):1189–1195 70. Rauh VA, Garfinkel R, Perera FP, et al. Impact of prenatal chlorpyrifos exposure on neurodevelopment in the first 3 years of life among inner-city children. Pediatrics. 2006;118(6):e1845–e1859 71. Engel SM, Miodovnik A, Canfield RL, et al. Prenatal phthalate exposure is associated with childhood behavior and executive functioning. Environ Health Perspect. 2010;118(4):565–571 72. Swan SH. Environmental phthalate exposure in relation to reproductive outcomes and other health endpoints in humans. Environ Res. 2008;108(2):177–184 73. Braun JM, Yolton K, Dietrich KN, et al. Prenatal bisphenol A exposure and early childhood behavior. Environ Health Perspect. 2009;117(12):1945–1952 74. Herbstman JB, Sjödin A, Kurzon M, et al. Prenatal exposure to PBDEs and neurodevelopment. Environ Health Perspect. 2010;118(5):712–719 75. Wasserman GA, Liu X, Parvez F, et al. Water arsenic exposure and intellectual function in 6-yearold children in Araihazar, Bangladesh. Environ Health Perspect. 2007;115(2):285–289 76. Wasserman GA, Liu X, Parvez F, et al. Water manganese exposure and children’s intellectual function in Araihazar, Bangladesh. Environ Health Perspect. 2006;114(1):124–129 77. Apelberg BJ, Witter FR, Herbstman JB, et al. Cord serum concentrations of perfluorooctane sulfonate (PFOS) and perfluorooctanoate (PFOA) in relation to weight and size at birth. Environ Health Perspect. 2007;115(11):1670–1676 78. Centers for Disease Control and Prevention. CDC investigation: blood lead levels higher after switch to Flint River water. https://www.cdc.gov/media/releases/2016/p0624-water-lead.html. Reviewed June 24, 2016. Accessed June 26, 2018 79. European Environment Agency. The European Environment—State and Outlook 2015: Assessment of Global Megatrends. Copenhagen, Denmark: European Environment Agency; 2015 80. Spitz PH, ed. The Chemical Industry at the Millennium: Maturity, Restructuring, and Globalization. Philadelphia, PA: Chemical Heritage Foundation; 2003 81. Cole MA, Elliott RJ. FDI and the capital intensity of “dirty” sectors: a missing piece of the pollution haven puzzle. Rev Dev Econ. 2005;9:530–548 82. Cole MA, Elliott RJ, Okubo T. Trade, environmental regulations, and industrial mobility: an industry-level study of Japan. Ecol Econ. 2010;69(10):1995–2002 83. Cole MA. Trade, the pollution haven hypothesis and the environmental Kuznets curve: examining the linkages. Ecol Econ. 2004;48:71–81 84. Kearsley A, Riddel M. A further inquiry into the Pollution Haven Hypothesis and the Environmental Kuznets Curve. Ecol Econ. 2010;69(4):905–919 85. Luzardo OP, Boada LD, Carranza C, et al. Socioeconomic development as a determinant of the levels of organochlorine pesticides and PCBs in the inhabitants of Western and Central African countries. Sci Total Environ. 2014;497–498:97–105 86. Kelly BB, Narula J, Fuster V. Recognizing global burden of cardiovascular disease and related chronic diseases. Mt Sinai J Med. 2012;79(6):632–640 87. Lim SS, Vos T, Flaxman AD, et al. A comparative risk assessment of burden of disease and injury attributable to 67 risk factors and risk factor clusters in 21 regions, 1990–2010: a systematic analysis for the Global Burden of Disease Study 2010. Lancet. 2012;380(9859):2224–2260 88. Murray CJ, Ezzati M, Flaxman AD, et al. GBD 2010: a multi-investigator collaboration for global comparative descriptive epidemiology. Lancet. 2012;380(9859):2055–2058 89. Le GV, Takahashi K, Karjalainen A. National use of asbestos in relation to economic development. Environ Health Perspect. 2010;118(1):116–119

PGCH_ch15_253-276.indd 274

8/20/18 8:15 AM

275 Chapter 15: Environmental Hazards and Global Child Health: The Need for Evidence-Based Advocacy

90. Berman DM. Asbestos and health in the third world: the case of Brazil. Int J Health Serv. 1986;16(2):253–263 91. Bose-O’Reilly S, Lettmeier B, Gothe RM, Beinhoff C, Siebert U, Drasch G. Mercury as a serious health hazard for children in gold mining areas. Environ Res. 2008;107(1):89–97 92. Cordy P, Veiga MM, Salih I, et al. Mercury contamination from artisanal gold mining in Antioquia, Colombia: the world’s highest per capita mercury pollution. Sci Total Environ. 2011;410–411: 154–160 93. Grandjean P, White RF, Nielsen A, Cleary D, de Oliveira Santos EC. Methylmercury neurotoxicity in Amazonian children downstream from gold mining. Environ Health Perspect. 1999;107(7): 587–591 94. UNEP (United Nations Environment Programme) 2010. Global Partnership on E-Waste Management. http://web.unep.org/gpwm/what-we-do/e-waste-management. Accessed June 26, 2018 95. Frazzoli CO, Orisakewe OE, Dragone R, Mantovani A. Diagnostic health risk assessment of electronic waste on the general population in developing countries’ scenarios. Environ Impact Assess Rev. 2010;30(6):388–399 96. Wu K, Xu X, Liu J, Guo Y, Li Y, Huo X. Polybrominated diphenyl ethers in umbilical cord blood and relevant factors in neonates from Guiyu, China. Environ Sci Technol. 2010;44(2):813–819 97. Xu X, Yang H, Chen A, et al. Birth outcomes related to informal e-waste recycling in Guiyu, China. Reprod Toxicol. 2012;33(1):94–98 98. Yang H, Huo X, Yekeen TA, Zheng Q, Zheng M, Xu X. Effects of lead and cadmium exposure from electronic waste on child physical growth. Environ Sci Pollut Res Int. 2013;20(7):4441–4447 99. Ahdoot S, Pacheco SE; American Academy of Pediatrics Council on Environmental Health. Global climate change and children’s health. Pediatrics. 2015;136(5):e1468–e1484 100. Sheffield PE, Landrigan PJ. Global climate change and children’s health: threats and strategies for prevention. Environ Health Perspect. 2011;119(3):291–298 101. Hooper MJ, Ankley GT, Cristol DA, Maryoung LA, Noyes PD, Pinkerton KE. Interactions between chemical and climate stressors: a role for mechanistic toxicology in assessing climate change risks. Environ Toxicol Chem. 2013;32(1):32–48 102. Noyes PD, McElwee MK, Miller HD, et al. The toxicology of climate change: environmental contaminants in a warming world. Environ Int. 2009;35(6):971–986 103. Olsen H, Burgess D, Streissguth A. Fetal alcohol syndrome (FAS) and fetal alcohol effects (FAE): a lifespan view, with implications for intervention. Zero to Three. 1992;13:24–29 104. Lumley J, Oliver SS, Chamberlain C, Oakley L. Interventions for promoting smoking cessation during pregnancy. Cochrane Database Syst Rev. 2004;(4):CD001055 105. Faber T, Kumar A, Mackenbach JP, et al. Effect of tobacco control policies on perinatal and child health: a systematic review and meta-analysis. Lancet Public Health. 2017;2(9):e420–e437 106. Nanninga S, Lhachimi SK, Bolte G. Impact of public smoking bans on children’s exposure to tobacco smoke at home: a systematic review and meta-analysis. BMC Public Health. 2018;18(1):749 107. Lepore SJ, Collins BN, Coffman DL, et al. Kids Safe and Smokefree (KiSS) multilevel intervention to reduce child tobacco smoke exposure: long-term results of a randomized controlled trial. Int J Environ Res Public Health. 2018;15(6):E1239 108. American Academy of Pediatrics Council on Environmental Health. Tobacco use and secondhand tobacco smoke exposure. In: Etzel RA, ed. Pediatric Environmental Health. 3rd ed. Elk Grove Village, IL: American Academy of Pediatrics; 2012:569–586 109. Stewart AM. Leukemia and other neoplasms in childhood following radiation exposure in utero—a general survey of present knowledge. Br J Radiol. 1968;41(489):718–719 110. Grosse SD, Matte TD, Schwartz J, Jackson RJ. Economic gains resulting from the reduction in children’s exposure to lead in the United States. Environ Health Perspect. 2002;110(6):563–569 111. Polychlorinated biphenyls (PCBs) manufacturing, processing, and use of prohibitions. 40 CFR §761. Electronic Code of Federal Regulations. https://www.ecfr.gov/cgi-bin/text-idx?tpl=/ ecfrbrowse/Title40/40cfr761_main_02.tpl. Accessed July 15, 2018

PGCH_ch15_253-276.indd 275

8/20/18 8:15 AM

276 Part 4: Models for Global Health Research

112. Whyatt RM, Rauh V, Barr DB, et al. Prenatal insecticide exposures and birth weight and length among an urban minority cohort. Environ Health Perspect. 2004;112(10):1125–1132 113. US Environmental Protection Agency Office of Air and Radiation. The Benefits and Costs of the Clean Air Act from 1990 to 2020. Washington, DC; US Environmental Protection Agency; 2011. https://www.epa.gov/sites/production/files/2015-07/documents/summaryreport.pdf. Accessed June 26, 2018 114. National Academy of Sciences. Toxicity testing in the 21st century: a vision and a strategy. Washington (DC): National Academies Press; 2007. http://dels.nas.edu/resources/static-assets/ materials-based-on-reports/reports-in-brief/Toxicity_Testing_final.pdf. Accessed June 26, 2018 115. American Academy of Pediatrics Council on Environmental Health. Chemical-management policy: prioritizing children’s health. Pediatrics. 2011;127(5):983–990 116. European Commission on the Environment. REACH. Brussels: European Commission; 2011 Jan 3. http://ec.europa.eu/environment/chemicals/reach/reach_intro.htm Accessed June 26, 2018 117. Ashford NA, Caldart CC. Environmental Law, Policy, and Economics: Reclaiming the Environmental Agenda. Cambridge, MA: MIT Press; 2008 118. Organization for Economic Cooperation and Development (OECD). Introduction to Pollutant Release and Transfer Registers (PRTRs). https://www.oecd.org/chemicalsafety/pollutant-releasetransfer-register/introductionto-pollutant-release-and-transfer-registers.htm. Accessed June 26, 2018 119. Frenk J, Moon S. Governance challenges in global health. N Engl J Med. 2013;368(10):936–942 120. United Nations Environment Programme. A Success in the Making: The Montreal Protocol on Substances That Deplete the Ozone Layer. Nairobi, Kenya: United Nations Environment Programme; 2007. http://ozone.unep.org/Publications/MP_A_Success_in_the_making-E.pdf. Accessed June 26, 2018 121. United Nations Environment Programme. Stockholm Convention on Persistent Organic Pollutants. Convention text. http://chm.pops.int/Convention/ConventionText/tabid/2232/Default. aspx. Accessed June 26, 2018 122. United Nations Environment Programme. Basel Convention. Controlling transboundary movements of hazardous wastes and their disposal. Milestones. http://www.basel.int/ TheConvention/Overview/Milestones/tabid/2270/Default.aspx. Accessed July 3, 2018 123. United Nations Environment Programme. Rotterdam Convention on the Prior Informed Consent Procedure for Certain Hazardous Chemicals and Pesticides in International Trade. Text of the convention. http://www.pic.int/TheConvention/Overview/TextoftheConvention/tabid/1048/ language/en-US/Default.aspx. Accessed June 26, 2018 124. Miller RW. How environmental hazards in childhood have been discovered: carcinogens, teratogens, neurotoxicants, and others. Pediatrics. 2004;113(4 Suppl):945–951

PGCH_ch15_253-276.indd 276

8/20/18 8:15 AM

277

CHAPTER 16

Implication of a Community-Based Participatory Research Model in a Behavioral Intervention Project in China Xiaoming Li, PhD Shan Qiao, PhD

abstract Community-based participatory research (CBPR), as a research paradigm emphasizing principles of participation, action, and empowerment, has been widely applied in public health areas to address health needs of local communities and reduce health disparities across ethnic, geographic, socioeconomic, and cultural groups. In this chapter, we briefly introduce the core concepts and main components of the CBPR approach, review its theoretical roots, and highlight its significance in connecting academic scholars and local partners and bridging research and practice. We illustrate the concepts through an adapted CBPR theoretical model with a focus on 4 dimensions—contexts, group dynamics, intervention, and outcomes—considered in developing and implementing a CBPR intervention project. We conclude with a case study of a behavioral intervention project in China to demonstrate how to apply CBPR principles in the context of global health and make several recommendations based on experiences gained from this and other projects.

OPERATING PRINCIPLES INCLUDED (SEE PART 1.) 1. Positive strategies (rigorous, evidence based, ethically sound, teachable, replicable, sustainable) 2. Partnership (respectful, bidirectional modalities) Competencies Addressed: R1, R2, R3, R4 See Chapter 8, Global Health Research Competencies.

Key Reference Frerichs L, Lich KH, Dave G, Corbie-Smith G. Integrating systems science and community-based participatory research to achieve health equity. Am J Public Health. 2016;106(2):215–222

PGCH_ch16_277-298.indd 277

8/20/18 8:15 AM

278 Part 4: Models for Global Health Research

Teaching Points 1 The core principles and basic components of community-based participatory

research (CBPR) include 1) participation by the local community, 2) equitable partnership among researchers and community members, 3) co-learning, 4) local system development and capacity building, 5) empowerment, and 6) a balance between research and action.

2 One conceptual framework of CBPR focuses on 4 dimensions: contexts, group dynamics, intervention, and outcomes.

3 The outcomes of CBPR include system, capacity, and health outcomes. System and capacity outcomes focus on structural changes, such as policy changes and community research infrastructures. Health outcomes, especially the reduction of health disparities, are the ultimate goals of CBPR practices.

4 To promote appropriate parental HIV disclosure practices in Guangxi,

China, a 5-year intervention project was delivered using the principles of CBPR. The lessons and experiences learned from this project include the development of a new local health policy and the establishment of internationally collaborative research.

Community-Based Participatory Research (CBPR) as a Research Orientation Community-based participatory research (CBPR) in the health field has been defined as “a collaborative approach to research that equitably involves all partners in the research process and recognizes the unique strengths that each brings. CBPR begins with a research topic of importance to the community and has the aim of combining knowledge with action and achieving social change to improve health outcomes and eliminate health disparities.”1 Community-based participatory research has been increasingly used for nearly 25 years in the United States, reflecting the growing interest among health professionals and researchers in finding a new approach to address complex health problems, responding to increasing community demands for research “with” the community rather than “on” the community, and echoing the new focus on implementation science to improve intervention outcomes across diverse contexts.2 Community-based participatory research represents a distinct research paradigm that highlights action-oriented and community-partnered approaches to health and health disparities.3 Wallerstein and Duran have extensively described the development of CBPR as a research paradigm historically and conceptually.4 The core approaches of CBPR are rooted in action research5 and participatory research (see Appendix C for both terms).6 Action research focuses on people’s engagement in problem-solving through a cycle of fact-finding, action, and evaluation,7 while participatory research reflects the relationship between outside researchers and community members.8 Other critical theories, including feminism, poststructuralism, and postcolonialism (see Appendix C for terms), also contribute to the theories of

PGCH_ch16_277-298.indd 278

8/20/18 8:15 AM

279 Chapter 16: Implication of a Community-Based Participatory Research Model

CBPR with the key concepts and issues of trust, power, dialogue, community capacity building, and collaborative inquiry toward the goal of social change to improve community health.2,4 Although the specific approaches of CBPR often vary with different goals and theoretical frameworks, there are a set of core principles and basic components of CBPR, as summarized as follows by Israel and colleagues9,10: ▶▶ Participatory ▶▶ Cooperative, engaging community members and researchers in a joint process in which both parties contribute equally ▶▶ Co-learning ▶▶ System development and local community capacity building ▶▶ Empowerment through which participants can increase control over their lives ▶▶ Balance between research and action Community-based participatory research principles have been successfully applied in developing and implementing numerous public health projects in various areas11–14 among diverse populations including women and adolescents,15–17 racial and ethnic minorities,18–20 and other marginalized populations.21–23 Benefits of the CBPR approach have been increasingly recognized.9,24 A CBPR-driven process integrates researchers’ theoretical and methodological expertise with participants’ real-world knowledge into a mutual partnership built on respect and trust.25 The engagement and empowerment of local communities increases the likelihood that research questions reflect practical problems and concerns to the communities. Involving local partners in the research decision-making process enhances the validity and quality of research data.26 The knowledge and experiences generated from the equitable collaborations between academic and community partners are more readily translated into action.16 In addition, CBPR provides an outlet to express the concerns and needs of the local community and assists building up community capacity for sustainable change.4

A Conceptual Model of CBPR While CBPR has been increasingly valued and used in the United States, the strengths of CBPR as a research paradigm have been less utilized in some low-, middle-, and upper-middle–income countries, including China. To facilitate the introduction and acceptance of this research approach in such settings, investi­ gators should learn from various examples of field experiences. We present one such example to illustrate the feasibility and challenges of applying CBPR approaches to public health research in settings without substantial utilization of CBPR. In this chapter, we will describe and analyze the CBPR approach employed in a parental HIV disclosure intervention project in China based on an adapted theoretical model of CBPR, the logic model of CBPR process to outcomes27 (Figure 16-1). Informed by literature reviews of prior CBPR studies, Wallerstein and colleagues proposed a conceptual framework of CBPR with focus on 4 dimen-

PGCH_ch16_277-298.indd 279

8/20/18 8:15 AM

Intervention Development

Intervention Delivery

Intervention Evaluation

Dissemination and Implication

Contexts • Sociocultural contexts • National and local policies • Historic context of collaboration • University capacity • Local partner capacity • Health issues

Group dynamics • Individual dynamics • Stuctural dynamics • Relational dynamics

Intervention • Fits to local explanatory models • Co-learning

Intervention • Fidelity and adaptation

Intervention • Empower local partner and community

Outcomes • System and capacity outcomes • Health outcomes

Figure 16-1. Conceptual Framework of Community-Based Participatory Research Adapted from Belone L, Lucero JE, Duran B, et al. Community-based participatory research conceptual model: community partner consultation and face validity. Qual Health Res. 2016;26(1):117–135, with permission from Sage Publications Inc.

280

Formative Study

Part 4: Models for Global Health Research

PGCH_ch16_277-298.indd 280

Needs Assessment

8/20/18 8:15 AM

281 Chapter 16: Implication of a Community-Based Participatory Research Model

sions: contexts, group dynamics, intervention, and outcomes.27 We adapted this framework by specifying the steps of the development and implementation of an intervention project and incorporating the key issues of the 4 dimensions into each step. Generally, the conceptual framework posits that contextual factors ground and shape community and academic group dynamics. Thus, the ­community-academic partnership influences the research and intervention design and implementation and, thereby, contributes to outcomes of CBPR.28–31 Compared with other conceptual models mainly highlighting the partnering process, this model provides an expanded articulation of contextual factors that may affect partnerships.25,27 These factors include sociocultural determinants influencing risks and protective factors for health problems; national and local policies providing political contexts for intervention design, delivery, and dissemination; history of collaboration between universities and local communities affecting how partnerships face and address trust (or mistrust) over time; university capacities to promote CBPR practices; community capacities to engage in CBPR and readiness to embrace changes; and health needs of the community as well as the perceived severity of these health issues. The dimension of group dynamics reflects the core value of creating equitable community-academic partnerships during the CBPR practice. Group dynamics include individual, structural, and relational aspects of the partnership. Individual dynamics consist of motivation, belief, and self-efficacy to engage in CBPR. Cultural humility and critical self-reflection are also important for trust and a successful partnership. Structural dynamics refer to the nature of the research team; for instance, its diversity and complexity of organization and agreements between partners. Relational dynamics are the interactive processes that build up partnerships. An effective relational dynamic may encourage mutual respect and learning, dialogue, participatory decision-making and negotiation, flexibility, integration of local beliefs into research groups, and research team involvement with the community (eg, community, social, and cultural events). Behavioral intervention(s) will be affected by contextual factors and group dynamics and will also lead to the outcomes of CBPR. The intervention design and development should be shaped by the interaction of the researchers with their local partners to fit into local culture and project environment. The implementation aspects of the intervention are of great importance in CBPR because these issues are critical for sustainability of community level change. Effective implementation of a behavioral intervention through a CBPR approach should promote high participation rates and low loss to follow-up without encroaching on intervention fidelity. The intervention evaluation should also be a process of empowerment. For example, local partners should be engaged in the development of the evaluation plan, and the outcome or impact evaluation should be connected with community benefits. The outcomes of the CBPR include system, capacity, and health outcomes. System and capacity outcomes focus on structural changes, such as policy changes and power relation changes to promote greater equity; new capacities, such as community research infrastructures and cultural renewal; and sustainability of

PGCH_ch16_277-298.indd 281

8/20/18 8:15 AM

282 Part 4: Models for Global Health Research

intervention and positive changes. Health outcomes, especially the reduction of health disparities, are the ultimate goals of CBPR practices. In the process of disseminating project outcomes and findings, equal value should be placed on dissemination to academia, local partners, and local communities.18

Case Study: Parental HIV Disclosure Project in China

Background HIV disclosure (HIV-infected persons disclose their HIV-positive serostatus to others) is a critical component of public health efforts to reduce the incidence of HIV infections and improve HIV treatment and care.32,33 Parental HIV disclosure to their children has become an important issue for HIV-infected parents and their children because many people living with HIV are now able to bear uninfected children and raise their children into adulthood.32 Empirical studies suggest that an appropriately planned and conducted parental HIV disclosure can improve parental mental health and promote treatment adherence, enhance the parent-child relationship, and positively affect the children’s psychological adjustment to parental HIV infection over the long term.34–37 However, parental HIV disclosure remains a major challenge for HIV-infected parents because of their fears of HIV-related stigma and discrimination, the concerns of possible negative psychological effects of disclosure on their children, and lack of confidence in being able to effectively communicate with their children about this issue.34 The rate of parental disclosure is generally low across the globe, especially in low- and middle-income countries; unplanned and unintended disclosures are still common.34,38 Although most parents express urgent needs for professional counseling and support about parental disclosure issues, there is a dearth of behavioral interventions or clinical guidelines addressing parental HIV disclosure among health care professionals.39 To promote appropriate parental HIV disclosure practices in China, we developed and implemented a theory-based parental disclosure intervention, Interactive Communication with Openness, Passion, and Empowerment (ICOPE), in Guangxi, China. “As of 2015, there were an estimated 850,000 people living with HIV in China, up from 810,000 in 2013 and 780,000 in 2011.”40 HIV disclosure presents a significant challenge for Chinese people living with HIV but has remained an understudied issue for years. The perceptions and experiences regarding HIV disclosure are embedded and shaped in Chinese sociocultural context.41 HIV-related stigma and discrimination is persistent in China, impeding HIV disclosure intention and practice.41 The influence of stigma and dis­­ crimination may be compounded by the cultural view of the familial obligation. Traditional Chinese culture emphasizes family as a core value. Stigma and discrimination against people living with HIV often extends to their families.42 The desire to protect their families and the fear of being isolated from their families influence those living with HIV in their disclosure decision-making process.43 In addition, lack of professional assistance and support may further deter appro-

PGCH_ch16_277-298.indd 282

8/20/18 8:15 AM

283 Chapter 16: Implication of a Community-Based Participatory Research Model

priate disclosure. There are no consistent clinical guidelines regarding HIV disclosure in China.44 Most health care professionals have not received adequate professional training on HIV disclosure.39

Project Sites The ICOPE project has been implemented in Guangxi. Since its first case of HIV infection was reported in 1989 Guangxi has witnessed an alarming increase of HIV prevalence.45 Originally, use of injection drugs was the primary route of infection, but sexual transmission has rapidly increased in recent years; heterosexual transmission in Guangxi increased from 43% in 2007 to 98% in 2017.46 The Guangxi Center for Disease Control and Prevention (CDC) reported a total of 80,480 HIV/AIDS cases by October 2017, representing a 15.7% increase since June 2011 (69,548 HIV/AIDS cases) and placing Guangxi second among 31 Chinese provinces in terms of HIV-seropositive cases.46 In Guangxi, the local CDC and hospitals conduct HIV screening and counseling. There is one designated primary public hospital (specifically its HIV clinic) in each urban district or rural township that is working under the direction of the city/county CDC to conduct clinical management and semiannual follow-ups for all HIV/AIDS patients in the district/township. In collaboration with the Guangxi CDC, we ranked all 17 cities and 75 rural counties in Guangxi in terms of number of reported HIV/AIDS cases. We selected the top 6 cities (urban centers) and top 10 rural counties with the largest number of reported HIV/AIDS cases to participate in our proposed study. All selected cities and counties agreed to participate. In a similar fashion, Guangxi CDC ranked urban districts in the 6 cities and townships in the 10 rural counties and identified urban districts and rural townships with at least 200 HIV/AIDS cases. We randomly selected 46 of them (stratified by urban vs rural sites) as our project sites.

Interactive Communication With Openness, Passion, and Empowerment (ICOPE) Project Introduction The ICOPE project was launched in 2013. It is a parental HIV disclosure intervention developed and evaluated with an ongoing longitudinal randomized controlled trial among 791 HIV-infected parents with children aged 6 to 15 years and 379 health care workers in HIV clinics. This intervention consists of a module for HIV-infected parents and a module for health care workers. The HIV-infected parent model aimed to promote parents’ self-efficacy for planning and conducting parental HIV disclosure, increase their HIV knowledge and communication skills needed for HIV disclosure, stimulate the development of an appropriate plan for HIV disclosure and performance of the disclosure, and improve medical adherence and clinical outcomes of parents as well as the psychological well-being of parents and children. The health care worker model aimed to provide health care workers with training and guidelines so they could obtain sufficient knowledge, skills, and confidence to assist HIV-infected parents with the process of disclosing their HIV infection to their children.

PGCH_ch16_277-298.indd 283

8/20/18 8:15 AM

284 Part 4: Models for Global Health Research

The ICOPE intervention design was guided by the theories of health communication and children’s development.47–49 Its intervention curriculum was adapted from 2 efficacious parental HIV projects in the United States: the Teaching, Raising, And Communicating with Kids (TRACK) program among mothers living with HIV51 and the Teens and Adults Learning to Communicate (TALC) program for HIV-infected parents and their adolescent children.51 The ICOPE intervention activities (HIV-infected parent modules) included a package of five 2-hour sessions focusing on positive coping (eg, coping with stigma, emotional control), disclosure decision-making, creating a developmentally appropriate disclosure plan, and accessing social support and post-disclosure counseling. The intervention for health care workers modules consists of a brief clinical guideline related to parental HIV disclosure and two 45-minute sessions organized around 2 primary themes: knowledge of child cognitive development and effective parentchild communication skills in the context of parental disclosure (eg, how to help children understand HIV). The intervention for parents was delivered in groups by health care workers in local HIV clinics who were selected as facilitators and who received a 3-day intensive training workshop. The intervention for health care workers was delivered by research staff from Guangxi CDC. The control groups among parents and health care workers received nutrition education. To evaluate the efficacy of this intervention, we collected quantitative data from parents, their children, the children’s teachers, and health care workers who participated in the ICOPE project. Data collection included baseline survey and 6 semiannual follow-ups for parents, children, and teachers or 4 semiannual follow-ups for health care workers. Main variables and outcomes included perceptions and practices related to HIV disclosure, family relations, mental health, medicine adherence, and clinical outcomes for parents; psychosocial and behavioral outcomes, parent-child relation, and school performance for children; and knowledge and self-efficacy in providing services related to HIV disclosure and readiness to incorporate parental HIV disclosure counseling into daily work for health care workers. Monitoring and evaluation tools were also used to assess the fidelity of intervention delivery.

The ICOPE Partnership The ICOPE project engaged diverse stakeholders, including HIV-infected parents and their children in 6 cities and 10 counties, teachers from community schools, health care workers in 46 HIV clinics, research staff in Guangxi CDC (province level) and local CDC (county level), and academic researchers from China and the United States. Guangxi CDC is the main local partner for the ICOPE project. As a primary public health authority at the province level, Guangxi CDC is a leading government agency that provides technical support and consultation for disease prevention and control at the regional and provincial level. Local CDCs work closely with other health care facilities (eg, hospitals, clinics, village doctors) and other government agencies (eg, health bureaus) to provide public health and preventive medical care services to communities and residents. In many counties, the health

PGCH_ch16_277-298.indd 284

8/20/18 8:15 AM

285 Chapter 16: Implication of a Community-Based Participatory Research Model

care workers in the local CDCs are engaged in HIV testing and case management services. They are familiar with the situations of HIV patients and their families through home visits, semiannual follow-ups, medication distribution, and clinical testing. Long-term collaboration among local CDCs, HIV clinics, HIV patients, and their families has built a strong mutual trust and effective working network, which is a solid foundation of community partnership and support for the ICOPE project. Meanwhile, the nature of primary care and preventive medical care, which require sustainable effort, helps position the Guangxi CDC and local CDCs as foundational partners with the local community, while placing significant weight on community benefits. In the context of 2 US National Institutes of Health studies funded since 2004, the US academic research team has developed a strong collaborative relationship with the Guangxi CDC, making efforts to improve the HIV-related research capacity of Guangxi CDC and local CDCs. Although Guangxi CDC has enormous strength in epidemiological research and disease surveillance, the inves­ tigators in Guangxi CDC had not been engaged in psychosocial and behavioral HIV research prior to the initiation of the research collaboration in 2004. The ­community-academic partnership has been designed to enable the development of the local investigators’ capacity in psychosocial and behavioral HIV research in terms of developing and conducting new research protocols and disseminating research findings in international journals and at conferences. The partners and stakeholders of the ICOPE project have been involved in each stage of the project.

Project Process Guided by CBPR Model Israel and colleagues have outlined 9 CBPR principles that capture the critical elements of the CBPR approach and concisely reflect the present state of knowledge in the field.52 In Table 16-1, we list these principles and the corresponding project phases and strategies to briefly illustrate how we used the CBPR principles in different stages of project development and implementation.

Stage 1: Needs Assessment—Rooted in the Local Context

Before developing the ICOPE project, we assessed and analyzed the local sociocultural contexts and health needs that could influence the goals, design, and implementation of the project. Need assessments were conducted through various approaches, including literature reviews and qualitative and quantitative studies in Guangxi and other different regions in China. We conducted a systematic review of the existing literature on parental HIV disclosure, including theoretical and empirical studies around the globe.34,53 We analyzed the cultural factors related to HIV disclosure, especially disclosing parental HIV status to children in China, such as HIV-related stigma and discrimination, parenting and communication style between parents and children, and health policy and regulations regarding HIV disclosure.41,54–56 Between 2011 and 2013, prior to project installment, we conducted a series of empirical studies. In collaboration with our local partners, we qualitatively explored the issues related to parental disclosure perceptions and practices in different HIV epicenters in China (eg, blood-driven

PGCH_ch16_277-298.indd 285

8/20/18 8:15 AM

Project Stages

Actors

Strategy

1. CBPR recognizes community as a unit of identity.

Stage 1: needs assessment Stage 2: formative study

University researchers Guangxi CDC Local CDCs

Identification of target communities based on • Literature reviews on parental HIV disclosure • Qualitative studies in Guangxi, Henan, Beijing • Quantitative study among children in Henan • Quantitative study among people living with HIV in Guangxi • Review of HIV epidemic data

2. CBPR builds on strengths and resources within the ­community.

Stage 1: needs assessment Stage 2: formative study

University researchers Guangxi CDC Local community members (eg, ­parents, children, health care ­workers, community leaders)

• Assessment of research capacities of university researchers and local partners • Formal and informal discussions between the principal investigator and local partners • In-depth interviews of local ­community members • Building up the CAB

3. CBPR facilitates a collaborative and equitable partnership in the research.

Stage 2: formative study Stage 3: intervention development

University researchers Guangxi CDC Local intervention facilitators CAB Local HIV-infected parents

Adaptation and localization of intervention curricula based on • Discussion and revision • Training workshop • Pilot test among target population

University researchers Guangxi CDC Local intervention facilitators CAB

Quality control based on • Booster training • Interactive monitoring and technique support system • Experience sharing

Stage 3: intervention development 4. CBPR promotes co-learning and capacity building among all Stage 4: intervention delivery Stage 5: intervention evaluation partners. Stage 6: dissemination and implication

286

CBPR Principles

Part 4: Models for Global Health Research

PGCH_ch16_277-298.indd 286

Table 16-1. Project Stages and the Use of Community-Based Participatory Research Principles

8/20/18 8:15 AM

PGCH_ch16_277-298.indd 287

Stage 4: intervention delivery Stage 5: intervention evaluation Stage 6: dissemination and implication

University researchers Guangxi CDC Local intervention facilitators CAB Health care workers in clinics serving patients living with HIV

Midterm evaluation based on • Stakeholders meeting • Preliminary study • Monitoring and evaluation tools • In-depth interviews among health care workers on implementation of innovation

6. CBPR emphasizes public health problems of local relevance and uses an ecological perspective.

Stage 1: needs assessment Stage 2: formative study Stage 3: intervention development

University researchers Guangxi CDC Local intervention facilitators Local community members (eg, parents, children, health care workers, community leaders)

Multilevel intervention

7. CBPR uses an interactive process.

Stage 3: intervention development Stage 4: intervention delivery Stage 5: intervention evaluation Stage 6: dissemination and implication

University researchers Guangxi CDC Local intervention facilitators CAB

• Interactive monitoring and technique support system • Midterm evaluation meeting

8. CBPR disseminates findings and knowledge gained to all partners and involves all partners in the dissemination process.

Stage 5: intervention evaluation Stage 6: dissemination and implication

University researchers Guangxi CDC Local intervention facilitators CAB Health care workers in clinics serving patients living with HIV

• Midterm evaluation meeting • Publication and presentation • Policy implication

9. CBPR requires a long-term process and commitment to sustainability.

Stage 6: dissemination and implication

University researchers Guangxi CDC Local intervention facilitators Local CDCs

Capacity building through • Publication and presentation • Policy implication • Grant writing

Abbreviations: CAB, community advisory board; CBPR, community-based participatory research; CDC, Center for Disease Control and Prevention; HIV, human immunodeficiency virus.

287

8/20/18 8:15 AM

Chapter 16: Implication of a Community-Based Participatory Research Model

5. CBPR integrates research and action for the mutual benefit of all partners.

288 Part 4: Models for Global Health Research

epidemic in rural Henan, epidemic in urban Beijing driven by men who have sex with men, and mixed sex-drug epidemic in Guangxi).57–59 In addition to qualitative investigations, we analyzed data collected in 2011 from 625 rural children affected by HIV/AIDS in Henan to explore the practices of parental HIV disclosure and its association with children’s demographic and psychosocial factors.60 We also incorporated the needs assessment of parental HIV disclosure into a cross-sectional survey among 2,989 people living with HIV in Guangxi.41,55 Although these studies were conducted in diverse settings, the findings were consistent: few Chinese HIV-infected parents had disclosed their status to their children, and fears of negative consequences and lack of professional guidance were the major barriers to disclosure. The HIV-infected parents and health care workers expressed the urgent need for well-planned and developmentally appropriate disclosure to maximize short- and long-term benefits to children, parents, and family functioning. Although we had effectively worked with local partners in several regions in China (Beijing, Henan, Guangxi), we decided to conduct the project in Guangxi because of the large number of newly reported HIV/AIDS cases, multiple modes of HIV transmission, and the collaboration we had built with local communities since 2004. We also made this decision because of the strong desire and motivation of Guangxi CDC to continue collaborating on the HIV disclosure issue. In addition to the local context and health needs of communities, the research capacities of the university and local partners are important factors in assessing the feasibility of conducting a project. The US research team had extensive experience (.19 years) in adapting and implementing evidence-based intervention in various cultural settings, including China. In addition, the team had worked with children and parents affected by HIV/AIDS in China on issues related to psychosocial intervention and HIV disclosure. During the previous collaborative project, the local partner also demonstrated its abilities in effectively accessing, recruiting, and retaining participants, implementing behavioral interventions in local context, and collecting and publishing data to inform the prevention research and field practices.

Stage 2: Formative Study—Group Dynamics to Strengthen Partnership

The academic-community partnership was further developed and strengthened through group dynamics (individual, relational, and relational dynamics) during the installment of the project. The principal investigator from the United States is originally from and educated in China and has maintained personal and academic connections with health professionals and academic institutions in China. His cultural humility based on an understanding of Chinese culture and current society enabled him to respect local partners and take flexible strategies in collaboration. After selecting the project site, the principal investigator traveled to Guangxi 3 times prior to formal initiation of the project and had numerous meetings with local partners, health care workers, and people living with HIV to seek their input in project design and implementation. The investigator and the Guangxi CDC had

PGCH_ch16_277-298.indd 288

8/20/18 8:15 AM

289 Chapter 16: Implication of a Community-Based Participatory Research Model

openly discussed the feasibility of the timeline of the project, while sufficiently respecting and considering the specific situations of local communities (eg, the calendar of local farmers and individuals who migrated to urban areas for seasonal jobs; local schools’ arrangement of semesters and holidays). To further inform the cultural adaptation of the intervention curricula, a research team composed of scholars from American and Chinese academic institutes and research staff from the Guangxi CDC conducted in-depth interviews in local communities. The diverse training background of the research team (including health economics, anthropology, psychology, and public health) increased challenges in communication and collaboration within the team, but it broadened the research perspectives for the preparation of interview guides. The research team interviewed 90 participants from the local community, including parents who had not disclosed their HIV infection to their children, parents who had disclosed to their children, children who had already known the parental HIV status, local health care workers, and community members. The process of data collection and discussion about the interview experience was also a process of communication between the research team and the local stakeholders in which the research team explained the goals of the project and its potential benefits for the target population and communities and listened to the suggestions, com­ ments, and expectations for the intervention project based on the community’s experiences. The partnership of various stakeholders was formed and sustained through structural dynamics such as official agreements and regular meeting arrangements. For example, the research agreement (“contract”) between the US institute and the Guangxi CDC formally clarified the important issues related to collaboration, such as responsibilities, timeline, milestones, and budget. We also established a community advisory board (CAB) for the ICOPE project. The membership of the CAB included representatives from local governmental agencies, local community-based organizations, health care professionals, and people living with HIV. The CAB was updated at 4-month intervals through a 2-hour meeting convened by the Chinese collaborators on the activities of the project and provided their input/insights on various cultural, policy, or regulatory issues related to recruitment, assessment, intervention, and diffusion and dissemination of research findings.

Stage 3: Intervention Development—Localization Through Co-learning and Training

In this stage of intervention development, we focused on developing intervention curricula based on cultural adaption and localization of existing intervention packages or their key components. We made extensive efforts to train local intervention facilitators (who delivered the intervention activities to the participants) and survey interviewers (who collected the longitudinal quantitative data). The core of successful localization of the intervention package and training of local research team was co-learning.

PGCH_ch16_277-298.indd 289

8/20/18 8:15 AM

290 Part 4: Models for Global Health Research

The co-learning atmosphere was characterized by mutual respect, self-­ reflection, open communication, and constructive feedback. The US research team carefully considered and discussed the suggestions from the local community and used them in the intervention package. The first draft of the curricula was sent back to Guangxi CDC and the CAB for their input. Any disagreements, concerns, or questions were discussed point by point between the US research team and Guangxi CDC through phone conferences and e-mails. Then the revised versions were brought to the training workshop for input from intervention facilitators. The training workshop required the trainees to review the intervention curricula, observe and practice mock sessions under the supervision of trainers, and master necessary knowledge and skills of facilitating a complete intervention protocol. Participatory training was employed to empower trainees through games, group discussion, role-play, mock exercise, group competition, and a ­question-and-answer session. At the end of the workshop, all trainees were asked to complete a brief training evaluation. The responses indicated that the participatory training approach created an easy co-learning atmosphere and assisted trainees in sharing questions, comments, stories, and experiences with trainers and their colleagues. The attitudes of trainers (US researchers) were critical in the co-learning process. We sincerely admitted the potential gap between research and real-world strategies and encouraged trainees to share their ideas. In addition, we took efforts to obtain trust from trainees by frequently interacting with them in formal (workshop) and informal (lunch and dinner during the workshop) occasions, providing immediate feedback on their questions and comments, and citing suggestions and cases they mentioned in group discussion. The finalization of the intervention curricula was completed after a pilot test among HIV-infected parents (parent module) or health care workers (health care worker module) in local sites. The US research team observed the pilot test and organized a focus group meeting with participating parents, health care workers, and the intervention facilitators. The entire group sat in a circle and was encouraged to express opinions on the content, format, timeline, and other issues related to implementing the intervention activities. Comments about the intervention activities contributed to modification of the curricula. Group opinions about the potential facilitators of and barriers to project implementation provided insights for strategies for intervention delivery.

Stage 4: Intervention Delivery— Fidelity and Adaptation

A critical issue for the CBPR stakeholders is to maintain a balance between the fidelity and adaptation of a developed intervention project. Booster training was an effective strategy to ensure the fidelity of the implementation of the ICOPE project. A 2-day booster training session prior to intervention delivery focused on the key principles and topics of each intervention session and provided an opportunity for intervention facilitators to discuss their concerns and problems with the trainers. Similarly, a 1-day booster training session prior to each of the follow-up

PGCH_ch16_277-298.indd 290

8/20/18 8:15 AM

291 Chapter 16: Implication of a Community-Based Participatory Research Model

assessments for survey interviewers was offered. The booster session briefly rehearsed the survey skills and reviewed the research ethics and human subject protection. An interactive monitoring and technique support system was created to guarantee the quality control during the project implementation. The monitoring and evaluation tools included fidelity forms completed by an assistant intervention facilitator to record the complement of key topics and feedback from the participants; photos and audio/video recordings of each session that were kept and tracked in time after appropriate consent was given by the participants; and an interactive technique support mechanism based on a popular online social media platform widely used in China through which the US research team was able to directly communicate with local intervention facilitators about their problems and questions in intervention practice and provide immediate feedback and suggestions. The local intervention facilitators were required to follow the intervention manual as much as possible during the ICOPE intervention, but they were also encouraged to propose new ideas and strategies based on the specific situations of the participants in their site. For instance, as designed, the intervention sessions were to be delivered in the format of group activities. However, several intervention facilitators thought that one-to-one session about parental HIV disclosure would be more appropriate because some of their HIV-infected patients worried about being embarrassed and uncomfortable to see or be seen by their neighbors in the group. After discussion with US researchers and the CAB, they decided to offer the intervention curriculum via a one-to-one session to the HIV-infected patients with concerns about group activities. Another good example came from the control group provided by a nutrition education program. One of the facilitators developed the idea of teaching HIV-infected patients basic nutrition knowledge, using quite a few local recipes for cooking healthy meals. The research team acknowledged her enthusiasm and adaptation and shared the recipes through the social media platform as a supplement of the original nutrition session package.

Stage 5: Intervention Evaluation: Honoring and Sharing

As a 5-year intervention project, the efficacy of the ICOPE project will be evaluated by baseline data and 6 follow-up surveys. However, the stakeholders and the CAB thought it necessary to assemble a midterm evaluation meeting in 2014. The 1-day meeting aimed to review the key milestones of project implementation, share the lessons and experiences within the project team, report preliminary findings based on the data collected, evaluate and honor the performance of the intervention facilitators based on process evaluation data (collected via monitoring and evaluation tools), highlight the future tasks according to the project timeline, and discuss potential challenges to completing these tasks. The main stakeholders of the ICOPE project were invited to this meeting, including representatives of the CAB, the director of Guangxi CDC, local principal investigators, the US principal investigator, and the project coordinator, as well as all intervention facilitators and survey interviewers from all project sites.

PGCH_ch16_277-298.indd 291

8/20/18 8:15 AM

292 Part 4: Models for Global Health Research

Based on feedback from the participants, the midterm evaluation successfully met its goals. The success of the midterm evaluation might have resulted from 2 strategies employed. First, the theme of the meeting focused on sharing and honoring to enhance the ownership of the local project partners. The agenda of the meeting was intentionally arranged to leave sufficient time for announcing awards to top-performing facilitators and intervention teams (based on voting by the CAB and Guangxi CDC), sharing of experiences and lessons in participants’ daily work, and group discussions of potential problems and strategies to address the problems. Participants expressed that they were very impressed by the award announcements and experience sharing and were motivated to effectively work on the remaining tasks in the future. Second, local teams had well documented almost all the activities in key steps of the project implementation and discussions in daily work related to the project. The memos of project activities, history record of social media discussions, audio/video documents of interventions, and agenda and feedback of previous training workshops provided useful information and solid evidence for performance evaluation and project implementation review and discussion. The midterm evaluation suggested that the ICOPE intervention was feasible and acceptable to HIV-infected parents and could be effective in facilitating wellplanned parental HIV disclosure and improving psychosocial well-being among HIV-infected parents. The intervention practices confirmed that parental HIV disclosure interventions should support various aspects of HIV disclosure (eg, post-disclosure coping, disclosure decision-making) and then extend to the entire disclosure process, and the disclosure interventions can be delivered through trained local health care workers or lay counselors rather than professionals (eg, social workers, psychiatrists, counselors), which echoes the strategy recently recommended by the World Health Organization about decentralizing HIV prevention and care in resource-constrained settings.61 To further evaluate the ICOPE project from the perspective of implementation science, the US research team conducted in-depth interviews with 20 directors or supervisors and 15 health care workers in HIV clinics and 6 public health managers from local health bureaus in 5 sites. We aimed to identify factors influencing the adoption and use of the innovative intervention (eg, the ICOPE project) among health care workers. Qualitative data analysis suggested that the facilitators for implementing innovations might include leaders’ positive attitudes toward innovation, peer norms favoring innovation, knowledge updating (by regular training, international collaboration, and information sharing through an Internet-based colleague network), and collaboration with and support from other relevant departments or institutes. Implementation of innovative intervention might be impeded by overwhelming workload, frequent staff turnover, limited leader support, and financial problems. A lack of a performance evaluation system and social norms valuing innovation might also be a structural obstacle for implementation of innovation.

PGCH_ch16_277-298.indd 292

8/20/18 8:15 AM

293 Chapter 16: Implication of a Community-Based Participatory Research Model

Stage 6: Dissemination and Implication—Capacity Building

The dissemination and implication of the knowledge, skills, principles, and preliminary findings of the ICOPE project is a process of capacity building by local partners and the US research team. The findings and lessons learned from the project have been disseminated within and beyond the local communities. Through project implementation, the knowledge of parental HIV disclosure and the principles of participatory research and intervention were disseminated from the Guangxi CDC research staff and the CAB to local intervention facilitators, health care workers, and HIV-infected parents. The key strategies during this process included demonstrating the significance of the project and benefits for the target population to improve buy-in of multiple stakeholders, tailoring intervention activities to match the needs and capabilities of the target population, and transforming original text curriculum into multimedia learning modules to explain complicated issues and develop user-friendly curriculum packages for various audiences. The preliminary findings of the project were also presented by the local partners to communities (eg, the CAB, local intervention facilitators) and to multiple platforms beyond the communities. The local principal investigator and the research staff at Guangxi CDC have published 28 papers in international peer-reviewed journals and given 53 oral and poster presentations at major international conferences such as the International AIDS Conference, AIDSImpact International Conference, American Public Health Association Annual Meeting, and Association for Psychological Science Annual Convention. The implications of the lessons and experiences learned from the ICOPE project include the development of a local clinical guideline and international collaboration in a new area of HIV disclosure (ie, partner disclosure). Many trained local intervention facilitators and health care workers in clinics serving HIV-infected patients have applied the principles of disclosure and communication skills learned from the ICOPE into the practice of HIV partner disclosure. The Guangxi CDC rapidly responded to the new practice by initiating clinical guidelines for HIV partner disclosure and holding a training workshop for HIV partner disclosure. As requested, the US research team provided technical support by preparing the training materials for the workshop and leading the workshop as trainers. Built on the foundation of this project, the community-academic partners have developed 2 new funded research proposals. One was an exploratory study proposed by the US investigator and funded by the US National Institutes of Health to explore the mechanisms through which HIV disclosure influences the clinical outcomes of HIV-infected patients. The other was proposed by local staff in the Beihai CDC (one of the ICOPE project sites), who were inspired by the CBPR principles highlighted in our project and planned to develop and maintain a mHealth training system (based on cell phones or tablets) for local village doctors in rural HIV prevention and care. The proposal was developed by local CDC with the assistance from the US research team and was funded by a local public health agency.

PGCH_ch16_277-298.indd 293

8/20/18 8:15 AM

294 Part 4: Models for Global Health Research

With the assistance and collaboration of the US partner, the Guangxi CDC and local CDCs have strengthened multiple capacities needed in research and practice, including implementation of a comprehensive multilevel randomized controlled trial, survey data collection and management, sample retention and follow-up, the principles of conducting CBPR, manuscript preparation and writing, and grant proposal writing. It is also notable that the preparation, development, and implementation of the ICOPE project demonstrated mutual capacity building within the community-academic partnership. The junior researchers of the US research team had the opportunity to enhance their research capabilities and strengthen their dedication to public health research during the international collaboration. Two research assistants engaged in the project have been accepted by doctoral programs in psychology in US institutions; the project coordinator has been promoted from postdoctoral fellow to faculty and developed from a junior scholar to an independent principal investigator. Continuous and mutual capacity building is critical for the sustainable change in communities and long-lasting community-academic partnership.

Lessons Learned From the ICOPE Project Building on our experiences in using a CBPR approach in the ICOPE project, we present our lessons and recommendations to researchers and practitioners in global health areas as follows: ▶▶ Long-term and sustainable partnership. An intervention could not be successfully designed or implemented without mutual trust between the local communities and the local CDC staff and collaboration between the US research team and Guangxi CDC. The trust from the target population in local communities had been built by local staff through their daily work and previous intervention activities, which was invisible but a valuable resource for future work. New intervention activities should avoid any violation of the sustainable trusting relationship between local health authorities and the local communities. The community-academic partnership can be enhanced by mutual respect and the empowerment of local communities in the intervention. ▶▶ Empowerment of local partners. A key facilitator to sustainable change in local communities is the strong sense of ownership of the intervention by the local partners. To enhance local ownership we must engage local partners in the decision-making process from the beginning of the intervention project and respect local knowledge learned from practices. ▶▶ Balance between fidelity and adaptation. It is important to ensure the fidelity of intervention activities when encouraging the appropriate adaptation of intervention based on local contexts. For example, the local partners in China may have their own styles and strategies to collect data and implement an intervention. Influenced by a cultural context that values authority and collectivism, they may not approach research ethics or individual rights in the same manner as Western colleagues.26 To avoid unguided adaptation or poor implementation of intervention activities, there is a need to effectively communicate with local

PGCH_ch16_277-298.indd 294

8/20/18 8:15 AM

295 Chapter 16: Implication of a Community-Based Participatory Research Model

partners and provide technical assistance to guide the adaptation. Additional research about the relationship between fidelity, adaptation, and effectiveness of intervention will be needed for CBPR and implementation science.

References 1. Community Health Scholars Program. Stories of Impact. Ann Arbor, MI: University of Michigan School of Public Health; 2001 2. Wallerstein N, Duran B, Oetzel J, Minkler M, eds. Community-Based Participatory Research for Health: Advancing Social and Health Equity. 3rd ed. San Francisco, CA: Jossey-Bass; 2018 3. Cornwall A, Jewkes R. What is participatory research? Soc Sci Med. 1995;41(12):1667–1676 4. Wallerstein N, Duran B. Theoretical, historical, and practice roots of CBPR. In: Wallerstein N, Duran B, Oetzel J, Minkler M, eds. Community-Based Participatory Research for Health: Advancing Social and Health Equity. 3rd ed. San Francisco, CA: Jossey-Bass; 2018:17–29 5. Lewin K. Action research and minority problems. J Soc Issues. 1946;2(4):34–46 6. Freire P. Pedagogy of the Oppressed. New York, NY: Bloomsbury; 2000 7. Coghlan D. Action research in the academy: why and whither? Reflections on the changing nature of research. Irish J Manage. 2004;25(2):1 8. Jones L, Wells K. Strategies for academic and clinician engagement in community-participatory partnered research. JAMA. 2007;297(4):407–410 9. Israel BA, Eng E, Schulz AJ, Parker EA. Methods for Community-Based Participatory Research for Health. 2nd ed. San Francisco, CA: Jossey-Bass; 2013 10. Israel BA, Schulz AJ, Parker EA, Becker AB. Review of community-based research: assessing partnership approaches to improve public health. Annu Rev Public Health. 1998;19:173–202 11. Chung K, Lounsbury DW. The role of power, process, and relationships in participatory research for statewide HIV/AIDS programming. Soc Sci Med. 2006;63(8):2129–2140 12. Cummins C, Doyle J, Kindness L, et al. Community-based participatory research in Indian country: improving health through water quality research and awareness. Fam Community Health. 2010;33(3):166–174 13. Downs TJ, Ross L, Mucciarone D, Calvache MC, Taylor O, Goble R. Participatory testing and reporting in an environmental-justice community of Worcester, Massachusetts: a pilot project. Environ Health. 2010;9:34 14. Simonds VW, Wallerstein N, Duran B, Villegas M. Community-based participatory research: its role in future cancer research and public health practice. Prev Chronic Dis. 2013;10:E78 15. Flicker S. Who benefits from community-based participatory research? A case study of the Positive Youth Project. Health Educ Behav. 2008;35(1):70–86 16. Jacquez F, Vaughn LM, Wagner E. Youth as partners, participants or passive recipients: a review of children and adolescents in community-based participatory research (CBPR). Am J Community Psychol. 2013;51(1–2):176–189 17. Langhout RD, Thomas E. Imagining participatory action research in collaboration with children: an introduction. Am J Community Psychol. 2010;46(1–2):60–66 18. Hicks S, Duran B, Wallerstein N, et al. Evaluating community-based participatory research to improve community-partnered science and community health. Prog Community Health Partnersh. 2012;6(3):289–299 19. De las Nueces D, Hacker K, DiGirolamo A, Hicks LS. A systematic review of community-based participatory research to enhance clinical trials in racial and ethnic minority groups. Health Serv Res. 2012;47(3 Pt 2):1363–1386 20. Wilson TE, Fraser-White M, Williams KM, et al. Barbershop Talk With Brothers: using community-based participatory research to develop and pilot test a program to reduce HIV risk among black heterosexual men. AIDS Educ Prev. 2014;26(5):383–397 21. Clements-Nolle K, Bachrach AM. CBRP with a hidden population: the transgender community health project a decade later. In: Minkler M, Wallerstein N, eds. Community-Based Participatory Research for Health: From Process to Outcomes. San Francisco, CA: Jossey-Bass; 2008:137–147

PGCH_ch16_277-298.indd 295

8/20/18 8:15 AM

296 Part 4: Models for Global Health Research

22. Rhodes SD, Kelley C, Simán F, et al. Using community-based participatory research (CBPR) to develop a community-level HIV prevention intervention for Latinas: a local response to a global challenge. Womens Health Issues. 2012;22(3):e293–e301 23. Shannon K, Bright V, Allinott S, Alexson D, Gibson K, Tyndall MW. Community-based HIV prevention research among substance-using women in survival sex work: the Maka Project Partnership. Harm Reduct J. 2007;4:20 24. Wallerstein N, Duran B. Community-based participatory research contributions to intervention research: the intersection of science and practice to improve health equity. Am J Public Health. 2010;100(Suppl 1):S40–S46 25. Cargo M, Mercer SL. The value and challenges of participatory research: strengthening its practice. Annu Rev Public Health. 2008;29:325–350 26. Liu J, McCauley L, Leung P, Wang B, Needleman H, Pinto-Martin J. Community-based participatory research (CBPR) approach to study children’s health in China: experiences and reflections. Int J Nurs Stud. 2011;48(7):904–913 27. Wallerstein N, Oetzel J, Duran B, Tafoya G, Belone L, Rae R. What predicts outcomes in CBPR? In: Minkler M, Wallerstein N, eds. Community-Based Participatory Research for Health: From Process to Outcomes. 2nd ed. San Francisco, CA: Jossey-Bass; 2008:371–394 28. Belone L, Lucero JE, Duran B, et al. Community-based participatory research conceptual model: community partner consultation and face validity. Qual Health Res. 2016;26(1):117–135 29. Brown-Peterside P, Laraque D. A community research model: a challenge to public health. Am J Public Health. 1997;87(9):1563–1564 30. Durkin MS, Kuhn L, Davidson LL, Laraque D, Barlow B. Epidemiology and prevention of severe assault and gun injuries to children in an urban community. J Trauma. 1996;41(4):667–673 31. Laraque D, Barlow B, Durkin M, Heagarty M. Injury prevention in an urban setting: challenges and successes. Bull N Y Acad Med. 1995;72(1):16–30 32. Li X, Qiao S, de Wit J, Sherr L. What’s in the telling? Understanding social, psychological and clinical aspects of HIV disclosure. AIDS Care. 2015;27(Suppl 1):1–5 33. Obermeyer CM, Baijal P, Pegurri E. Facilitating HIV disclosure across diverse settings: a review. Am J Public Health. 2011;101(6):1011–1023 34. Qiao S, Li X, Stanton B. Disclosure of parental HIV infection to children: a systematic review of global literature. AIDS Behav. 2013;17(1):369–389 35. Clifford G, Craig GM, McCourt C, Barrow G. What are the benefits and barriers of communicating parental HIV status to seronegative children and the implications for Jamaica? A narrative review of the literature in low/middle income countries. West Indian Med J. 2013;62(4):357–363 36. Murphy DA. HIV-positive mothers’ disclosure of their serostatus to their young children: a review. Clin Child Psychol Psychiatry. 2008;13(1):105–122 37. Hawk ST. Disclosures of maternal HIV infection to seronegative children: a literature review. J Soc Pers Relat. 2007;24(5):657–673 38. Krauss BJ, Letteney S, De Baets AJ, Baggaley R, Okero FA. Caregiver’s HIV disclosure to children 12 years and under: a review and analysis of the evidence. AIDS Care. 2013;25(4):415–429 39. Nie JB, Walker ST, Qiao S, Li X, Tucker JD. Truth-telling to the patient, family, and the sexual partner: a rights approach to the role of healthcare providers in adult HIV disclosure in China. AIDS Care. 2015;27(Suppl 1):83–89 40. WHO Western Pacific Region. Country profiles on HIV: China. http://www.wpro.who.int/hiv/ data/countries/chn/en. Accessed July 16, 2018 41. Qiao S, Li X, Zhou Y, Shen Z, Tang Z, Stanton B. The role of enacted stigma in parental HIV disclosure among HIV-infected parents in China. AIDS Care. 2015;27(Suppl 1):28–35 42. Li L, Liang LJ, Ding YY, Ji G. Facing HIV as a family: predicting depressive symptoms with correlated responses. J Fam Psychol. 2011;25(2):202–209 43. Ding Y, Li L, Ji G. HIV disclosure in rural China: predictors and relationship to access to care. AIDS Care. 2011;23(9):1059–1066 44. Li L, Sun S, Wu Z, Wu S, Lin C, Yan Z. Disclosure of HIV status is a family matter: field notes from China. J Fam Psychol. 2007;21(2):307–314

PGCH_ch16_277-298.indd 296

8/20/18 8:15 AM

297 Chapter 16: Implication of a Community-Based Participatory Research Model

45. Guangxi Center for Disease Control and Prevention. Update on HIV/AIDS epidemic in Guangxi. Paper presented at: NIAAA venue-based HIV and alcohol risk reduction among female sex workers in China; July 19–21, 2009; Guilin, Guangxi, China 46. Tang Z. Review of “12th-5-year plan” science and technology innovation in HIV prevention and control and looking ahead to the “13th-5-year plan.” Nanning, Guangxi China: Guangxi CDC; 2017 47. Chaudoir SR, Fisher JD, Simoni JM. Understanding HIV disclosure: a review and application of the Disclosure Processes Model. Soc Sci Med. 2011;72(10):1618–1629 48. Gerson AC, Joyner M, Fosarelli P, et al. Disclosure of HIV diagnosis to children: when, where, why, and how. J Pediatr Health Care. 2001;15(4):161–167 49. Piaget J. The Child’s Conception of Physical Causality. London, United Kingdom: Routledge, Trench, Trubner & Co; 1930 50. Murphy DA, Armistead L, Marelich WD, Payne DL, Herbeck DM. Pilot trial of a disclosure intervention for HIV1 mothers: the TRACK program. J Consult Clin Psychol. 2011;79(2):203–214 51. Rotheram-Borus MJ, Rice E, Comulada WS. Intervention outcomes among HIV-affected families over 18 months. AIDS and Behav. 2012;16(5):1265–1275 52. Israel BA, Schulz AJ, Parker EA, Becker AB, Allen AJ, Guzman JR. Critical issues in developing and following CBPR principles. In: Wallerstein N, Duran B, Oetzel J, Minkler M, eds. CommunityBased Participatory Research for Health: Advancing Social and Health Equity. San Francisco, CA: Jossey-Bass; 2018:31–44 53. Qiao S, Li X, Stanton B. Theoretical models of parental HIV disclosure: a critical review. AIDS Care. 2013;25(3):326–336 54. Lin X, Chi P, Zhang L, et al. Disclosure of HIV serostatus and sexual orientation among HIVpositive men who have sex with men in China. Community Ment Health J. 2016;52(4):457–465 55. Qiao S, Li X, Zhou Y, Shen Z, Tang Z, Stanton B. Factors influencing the decision-making of parental HIV disclosure: a socio-ecological approach. AIDS. 2015;29(Suppl 1):S25–S34 56. Xiao Z, Li X, Qiao S, Zhou Y, Shen Z, Tang Z. Using communication privacy management theory to examine HIV disclosure to sexual partners/spouses among PLHIV in Guangxi. AIDS Care. 2015;27(Suppl 1):73–82 57. Qiao S, Li X, Stanton B. Practice and perception of parental HIV disclosure to children in Beijing, China. Qual Health Res. 2014;24(9):1276–1286 58. Qiao S, Li X, Zhao G, Zhao J, Stanton B. Secondary disclosure of parental HIV status among children affected by AIDS in Henan, China. AIDS Patient Care STDS. 2012;26(9):546–556 59. Zhou Y, Zhang L, Li X, Kaljee L. Do Chinese parents with HIV tell their children the truth? A qualitative preliminary study of parental HIV disclosure in China. Child Care Health Dev. 2013;39(6):816–824 60. Zhao J, Li X, Qiao S, Zhao G, Zhang L, Stanton B. Parental HIV disclosure: from perspectives of children affected by HIV in Henan, China. AIDS Care. 2015;27(4):416–423 61. Callaghan M, Ford N, Schneider H. A systematic review of task-shifting for HIV treatment and care in Africa. Hum Resour Health. 2010;8:8

PGCH_ch16_277-298.indd 297

8/20/18 8:15 AM

PGCH_ch16_277-298.indd 298

8/20/18 8:15 AM

299

CHAPTER 17

Ethical Research in Global Child Health Deborah Dewey, PhD, RPsych Eveline T. Konje, BSc, MSc Elias C. Nyanza, BSc, MPH Francois P. Bernier, MD, FRCPC Mange Manyama, MD, MSc, PhD

abstract Global child health research plays a pivotal role in addressing inequities in children’s health and development worldwide. To achieve this goal, research must be based on sound scientific and ethical principles. This chapter focuses on ethics in child health research in low-, middle-, and high-income countries. It reflects on the key principles underlying ethical research in general and in global health research and child health research in particular. This is followed by a detailed discussion of 3 core principles underlying child health research: respect, benefit, and justice. Research with children poses important and universal ethical issues across world contexts, including establishing consent, protection from harm, privacy, and payment and gifts. Cultural, social, political, and economic factors that can interact to pose particular challenges with regard to these issues in different contexts, especially in low- and middle-income settings, are explored. As methodology and ethics are integrally linked, this chapter also examines the ways in which children have been included in health research studies: research on children, research with children, and research by children. This is followed by a brief discussion of ethical mechanisms that are in place to ensure that ethical standards are met and maintained in research on global child health. The chapter concludes with a discussion of the many positive changes in ethical research involving children in recent years. Emerging ethical challenges in the fields of genetics and genomics are ­highlighted.

PGCH_ch17_299-320.indd 299

8/20/18 8:16 AM

300 Part 4: Models for Global Health Research

OPERATING PRINCIPLES INCLUDED (SEE PART 1.) 1. Positive strategies (rigorous, evidence based, ethically sound, teachable, replicable, sustainable) 2. Partnership (respectful, bidirectional modalities) Competencies Addressed: R1, R4 See Chapter 8, Global Health Research Competencies.

Key References Joseph PD, Caldwell PH, Tong A, Hanson CS, Craig JC. Stakeholder views of clinical trials in low- and middle-income countries: a systematic review. Pediatrics. 2016;137(2):e20152800 Heerman WJ, White RO, Barkin SL. Advancing informed consent for vulnerable populations. Pediatrics. 2015;135(3):e562–e564

Teaching Points 1 The primary principles underlying global child health research are authentic

partnering, inclusion, shared benefits, commitment to the future, responsiveness to causes of inequities, and humility.

2 The key principles of ethical research are respect for persons, concern for welfare, and justice.

3 The inclusion of children in health research studies is an ethical imperative; not only is child health research beneficial but the lack of such research can be harmful.

4 Four key ethical issues in research involving children are establishing consent/assent, protecting children from harm, ensuring privacy/­ confidentiality, and providing payment or gifts.

5 Models of child research take 3 forms: research on children, research with children, and research by children.

6 Challenges in conducting ethical research with pediatric populations in lowand middle-income countries relative to high-income countries include 1) participation in research may take children away from productive work that supports the family; 2) participants not attending to the risks involved in the study because of the monetary benefits; 3) compensation may fuel resentment in a community; and 4) informed consent/assent may be undermined because parents and children may not understand the risks. 7 To support child health research initiatives in all countries bioethics and

research capacity must be strengthened; child health research must be linked to community needs in a transparent and participatory process; there must be ongoing communication among ethicists, researchers, and local communities; and the clear goal of all research activities must be the reduction in global inequities.

PGCH_ch17_299-320.indd 300

8/20/18 8:16 AM

301 Chapter 17: Ethical Research in Global Child Health

Principles of Global Health Research Globally, wide inequities in health, the burden of disease, and economic development exist within and between countries. Health is the cornerstone of development, and good health is the foundation of economic progress in any society, a multiplier of society’s human resources, and the primary objective of development.1,2 Global health research plays a pivotal role in promoting greater health equity and human development worldwide. To achieve these aims, research must be based on sound scientific and ethical principles. In November 2015, the Canadian Coalition for Global Health Research identified 6 principles for researchers and others to adopt to ensure more ethical and equitable forms of global health research.3 These principles are authentic partnering, inclusion, shared benefits, commitment to the future, responsiveness to causes of inequities, and humility. A detailed discussion of the ways in which these principles can be used to guide researchers’ involvement in global health research can be found online.3 Research requires funding, and research funding in low- and middle-income countries is an issue of concern. Many of the most significant health problems facing us globally are in low- and middle-income countries; however, limited research resources are earmarked for these problems. This has been referred to as the “10/90 research gap”; only 10% of the global spending on health research is devoted to diseases or conditions that account for 90% of the global burden of disease.4 Moreover, disproportionately fewer research funds have been made available by major granting agencies to pediatric research,5 even though safeguarding health during childhood is arguably more important than at any other age because poor health during the early years is likely to permanently affect health over the life course.6 To address these imbalances, it is essential that equity in health research be promoted globally, research dollars be directed where they have the highest likelihood of improving outcomes (ie, child health), and research capacity in low- and middle-income countries be strengthened to undertake research, and particularly research in child health, that is relevant to their needs.7

Research Ethics Significant advances in human understanding in the health sciences, social sciences, natural sciences, humanities, and engineering have been made as a result of research involving humans. A fundamental premise of research involving human participants is that it can benefit human society. Research seeks to ­understand things that have not been revealed and, therefore, may entail risks to participants and others. These risks can be trivial or profound, have physical or psychological effects, and have effects at the individual, family, and societal levels. Ethical principles and guidelines play an important role in advancing the pursuit of knowledge while protecting and respecting research participants. In 1966, Henry K. Beecher wrote that “an experiment is ethical or not at its inception: it does not become ethical post hoc.”8 Research ethics is a term that is used to refer to ethical philosophies and also the mechanism used to promote and enforce the ethical conduct of research, including the International Ethical Guidelines for Biomedical Research Involving Human Subjects9; the Declaration of

PGCH_ch17_299-320.indd 301

8/20/18 8:16 AM

302 Part 4: Models for Global Health Research

Helsinki10; the Council for International Organizations of Medical Sciences, in collaboration with the World Health Organization (WHO)11; the National Institutes of Health Regulations, Policies, and Guidelines Ethical Guideline and Regulation12; the Tanzania National Health Research Forum, Guidelines on Ethics for Health Research in Tanzania13; and the Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans.14 These policy documents and the accompanying systems (ie, ethics review boards or committees) ensure that research meets appropriate ethics standards and monitor the compliance of research to ethical principles. The underlying core value of the Tri-Council Policy Statement is “respect for human dignity,” which requires that all “research involving humans be conducted in a manner that is sensitive to the inherent worth of all human beings and the respect and consideration that they are due.”14 This core value is expressed through 3 core principles: respect for persons, concern for welfare, and justice. ▶▶ Respect for persons recognizes the intrinsic value of humans and the respect that they are due. It incorporates the obligations to respect autonomy and to protect those with developing, impaired, or diminished autonomy. While autonomy may be considered a necessary condition for participation in research, involving those who lack the capacity to make their own decisions to participate, such as young children, can be valuable and even necessary. Therefore, additional measures are needed to protect their interests and ensure their wishes, to the extent that it is possible to know, are respected. Typically, this involves obtaining consent from an authorized third party, such as a parent or legal guardian, because the child (younger than 18 years) cannot legally provide consent to be involved in research. ▶▶ Concern for welfare means that researchers and research ethics boards should aim to protect the physical, mental, and spiritual health, as well as the physical, economic, and social circumstances, of all individuals who participate in research. Other contributing factors to welfare are informed and ongoing consent, minimization of risks associated with participation, and providing participants with enough information so that they are able to adequately assess the risks and the potential benefits of their participation. ▶▶ Justice requires that all research participants be treated fairly and equitably. However, treating people fairly and equitably does not mean that they must be treated in the same way. One important difference that must be considered is vulnerability. Children are a vulnerable population even in the richest parts of the world and may need to be afforded special attention to be treated justly in research. Ensuring the ethical conduct of research requires researchers and research ethics boards and committees to adjudicate 2 main goals: to provide the necessary protection to participants and to serve the legitimate requirements of the research. The application of the core principles of respect for persons, concern for welfare, and justice helps to ensure that a balance between these goals is achieved and maintained.

PGCH_ch17_299-320.indd 302

8/20/18 8:16 AM

303 Chapter 17: Ethical Research in Global Child Health

Child Research Ethics Perspectives on research with children is embedded within our particular understanding of children and childhood15; that is, “ethical principles and issues cannot be disconnected from researchers’ attitudes, values, beliefs and assumptions about children and childhood.”16 Historically, health research involving children was discouraged on ethical grounds and was essentially barred by the Nuremberg Code.17 Children have also been underserved in research for a variety of reasons, including protectionist attitudes, concerns about confidentiality, difficulties in recruiting adequate numbers of children as participants, and the cost of bringing to market new drugs or other medical technologies for a small population.18–20 There is also evidence in the research literature that pediatric researchers have not emphasized the importance of ethical considerations. This is supported by the findings that 40% of pediatric research studies published in 5 major American journals in 1999 did not document that they had received ethics approval.21 A recent study of surgical pediatric publications revealed that only 54% reported information on ethical approval and only 16% reported on informed consent/ assent (see Appendix C for both terms).22,23 There is growing recognition that the inclusion of children in health research studies is essential and an ethical imperative,24 particularly in light of evidence that not only is child health research beneficial but the lack of such research can be harmful.25 This has led to growing involvement of children in research and has prompted national and international organizations to develop ethical guidance for research involving children, including the recently published Ethical Research Involving Children compendium.16 According to the compendium, “…ethics is much more than procedural compliance with a prescribed set of rules or code of conduct that can deliver good or safe research….”16 Research with children must take into account how researchers’ knowledge, beliefs, and values intersect with ethical decision-making. The underpinnings of all research with children are respect for dignity, well-being, and the rights of all children irrespective of context. Ethical research with children also requires the recognition of the multiple contexts that shape children’s lives and experiences. These include the cultural, social, economic, and political milieu as well as the relationships that develop by participating in research among the researchers and the children, their parents, and other significant adults, such as teachers and institutions. A proactive approach to global child health research serves all children by ensuring that the research being undertaken is consistent with local priorities and that the observational and intervention studies are consistent with the customs and needs of the population with whom investigators are working.

Research Ethics and Children’s Rights Major common principles underlying research ethics and human rights include respect for human dignity, equality, confidentiality, freedom of expression, access to information, and justice. The United Nations Convention on the Rights of the

PGCH_ch17_299-320.indd 303

8/20/18 8:16 AM

304 Part 4: Models for Global Health Research

Child (UNCRC) is a human rights treaty articulating the civic, political, economic, social, health, and cultural rights of children; it has been ratified by all UN members except the United States. It has implications for researchers as an international charter on children’s rights and as a framework for interpretation and application of children’s rights in the context of research ethics.20 The UNCRC gives visibility and legitimacy to the participation of children in research, while emphasizing their need for protection. Although it does not refer specifically to research, its articles encompass most aspects of children’s lives, including participation in research.26 It recognizes that children are able to, entitled to, and have the right to participate in research in an appropriate fashion.27 Some researchers have suggested that the perspective of a child should be incorporated in all research involving children.28,29 Hill suggests that ethical child research can be guided by 4 rights embedded in the UNCRC: welfare, protection, provision, and choice and participation.29 According to Hill, the purpose of research should contribute to children’s well-being (welfare), involve methods designed to avoid distress and include contingency arrangements in case of upset or situations of risk or harm (protection), result in children feeling good about having contributed to research (provision), and allow children to make informed choices about all aspects of participation, including assent, opting out, and contributing ideas to research agendas and processes (choice and participation). However, Bell maintains that is it not always clear how children’s rights are recognized in research ethics and suggests the principles reflected in the UNCRC provide a starting point for the development of research ethics guidelines for child research.30 Thus, a link can be made between children’s participation in research, children’s rights as recognized in the UNCRC, and ethical research with children. Exploration of these links in the research literature has been limited. Therefore, to improve ethical research with children and particularly global health research, we need to investigate these links and the meaning they have for children and researchers.

History of Global Child Health Research Worldwide, all children should have the capability to attain health at the highest standard regardless of socioeconomic status, race, religion, or geographic location.31 However, the current state of global health is that many children in lowand middle-income countries and disadvantaged areas of high-income countries continue to die each year of preventable diseases, including those for which effective vaccines are available. A primary aim of global child health research should be to achieve equity in child health. Unethical health research priorities place children who live in poverty at a significant disadvantage, first because the global research agenda has typically neglected the poor, and second because of the relative lack of support for pediatric research, epitomized by the paucity of clinical trials of new pharmaceutical products that involve children.31 These omissions imply that the health of the poor,

PGCH_ch17_299-320.indd 304

8/20/18 8:16 AM

305 Chapter 17: Ethical Research in Global Child Health

and particularly children in low- and middle-income countries, has not been adequately addressed by the organizations that support health research. A review of pediatric randomized controlled drug trials published in major pediatric journals in 2007 revealed that only 24% of studies took place in low- and middle-­ income countries, and those that did were of lower methodological quality32 than those performed in high-income countries. A shift toward more ethical global pediatric research is underway. This is evidenced by the recently published Ethical Research Involving Children compendium16 discussed previously, and efforts of the Child Health and Nutrition Research Initiative to coordinate global research priority setting for child health, nutrition, and development.33 There are also smaller scale partnerships that are capitalizing on collaborative research projects to build sustainable and effective child health research programs, including our own ongoing collaborative research initiatives between the Catholic University of Health and Allied Sciences (CUHAS) and the University of Calgary that are examining child health outcomes in Tanzania. These collaborative research studies are investigating ▶▶ The effect of exposure to arsenic and mercury from artisanal mining on birth outcomes and early child health and development ▶▶ The effect of home versus health facility birth in neonate/infant survival and morbidity ▶▶ The effect of maternal depression on infant growth and morbidity ▶▶ The relationships between stress, anxiety, depression, and birth outcomes in pregnant women in Mwanza, Tanzania ▶▶ The biodiversity and prevalence of gastrointestinal parasites among the population who live in the Ngorongoro Conservation Area in Tanzania ▶▶ Growth faltering, facial shape, and environmental variance in Tanzanian ­children Such collaborations are important because they serve to benefit the local populations from which the study participants are recruited and they increase the research capacity of local institutions to conduct pediatric health research on issues of concern to the local community.

Core Ethical Principles in Global Child Health Research As noted previously, in addition to setting ethical priorities and objectives, an ethics-based approach to global child health research must incorporate the 3 core ethical principles of respect, benefit, and justice. Respect implies valuing children and the context of their lives; that is, the particular needs and characteristics of the children, their culture, and how culture shapes their experiences, capabilities, and perspectives.34 It extends beyond the children who have directly participated in the research to all children who could be affected by the research. The ethical principle of benefit has 2 components: non-maleficence (do not harm) and beneficence (actions that promote well-being of children). Prior to

PGCH_ch17_299-320.indd 305

8/20/18 8:16 AM

306 Part 4: Models for Global Health Research

undertaking any research in pediatric global child health, it is essential that the research team consider minimization of unintended harms; they need to examine how, why, and under what circumstances unintended harms associated with well-meaning global child health research could occur. The principle of beneficence refers to researchers’ obligations to improve the status, rights, and/or well-being of children. Both the research process and outcomes of the research should provide positive benefits. Gaining information from children through research should result in the children, and possibly the children’s families and/or local communities, receiving something in return for this information. In addition, benefits should also accrue to children in general through the implementation of policies and practices that result in improved quality of life. The principles of justice and distributive justice (see Appendix C) should be the foundation of all global child health research.35 Justice ensures that children are treated fairly and equitably. This requires that researchers attend to the power imbalances inherent in the adult-child research relationships. Researchers must balance the perceived benefits of the research and the perceived burdens placed on the child and family. Furthermore, all research should be designed to obtain knowledge that benefits the children who participate in the research. Research conducted in low- and middle-income countries needs to take into account the inequities in health and health care that exist in these countries. In the past, some placebo-controlled HIV trials for the prevention of perinatal HIV transmission were unethical because they did not account for the realities of the health care available to the study population. They did not ensure that or consider if the research result could be applied where the study was conducted.36,37 Because research in global child health has often ignored inequities in health and frequently not accounted for the culture and politics of local communities and countries, translation of research into action has been limited. Some examples of research that has been successfully translated to practice and resulted in improved pediatric health in low- and middle-income countries include using treated bed nets to reduce febrile episodes and all causes of mortality among children aged 1 to 4 years,38 reducing maternal HIV viral load through maternal prophylactic antiretroviral treatment to reduce mother-to-child HIV transmission,37,39 and using large doses of vitamin A as part of the routine management and treatment of measles to reduce incidences of blindness and fatalities.40

Key Ethical Issues Four key ethical issues have been identified in research involving children: establishing consent/assent, protecting children from harm, ensuring privacy/­ confidentiality, and providing payment or gifts.20 Related issues that have been identified include hearing and giving value to the voice of children (assent), determining the capacity of children to make decisions, respecting children’s autonomy so their decisions can be well informed, and acknowledging the effect of community on children’s autonomy and decision-making capacity.

PGCH_ch17_299-320.indd 306

8/20/18 8:16 AM

307 Chapter 17: Ethical Research in Global Child Health

Consent/Assent The consent/assent processes that are typically used in low- and middle-income countries have been adopted from those used in high-income countries such as the United States and Canada. There is a need, however, to increase the contextual suitability of informed consent/assent processes in low- and middle-income countries without compromising ethical standards. Prospective studies of the informed consent process in low- and middle-income countries are needed to ensure that the practices that have been instituted, such as those of the National Institute for Medical Research in Tanzania, result in parents and children providing informed consent and assent, respectively. Further, the creation of research community advisory boards should be encouraged. Such boards would assist researchers in better understanding local communities’ perspectives on research consent/assent involving children and could facilitate the implementation of the informed consent and assent processes that reflect the needs and wishes of the study participants and the local community.41 Research involving researchers from different countries must be subject to ethics review and approval from the participating jurisdictions, as ethical regulations and concerns can differ from one country to another and even among different cultural groups within regions of a country. What is considered safe and ethical from a high-income nation’s perspective might be unacceptable in lowand middle-income countries. For instance, the regulatory definition of a child differs from one country/jurisdiction to another. In the United States, the legal definition of a child is a state matter. In most states, individuals younger than 18 years are considered children, but this is not true in every state. Further, certain states provide a mechanism for the emancipation of minors. This allows children younger than the legal age of adulthood to gain certain civil rights, which might include the legal ability to consent to research participation. Throughout Canada, parent/guardian consent is required for children and youth younger than 16 years to participate in research except in the province of Quebec, in which parental/guardian consent is required for children and youth younger than 18 years. However, in all provinces, emancipated minors (ie, minors no longer dependent on their parents) and mature minors (ie, persons who, regardless of their age, are able to understand and appreciate the nature and consequences of proposed research) may consent to participation. In Tanzania, all individuals younger than 18 years, no matter their circumstances, are considered children and require parental/guardian consent to participate in research. In low- and middle-income countries, investigators need to be aware of national and local sociodemographic and cultural factors that might influence the consent process. For example, parents may not give consent to children’s participation in research due to inability to read forms or a lack of understanding of the research and informed process. Establishing valid, informed consent/assent that protects children can be a significant issue for global child health research. For example, in a placebo-­ controlled clinical trial on the Haemophilus influenzae type b vaccine conducted

PGCH_ch17_299-320.indd 307

8/20/18 8:16 AM

308 Part 4: Models for Global Health Research

in Gambia, only 10% of the parents of children participating in the trial were aware of the concept of placebo, with 93% joining the trial so their child could receive the active vaccine.42 Thus, in low- and middle-income countries, informed consent/assent may be undermined because parents and children may not truly understand what they are being asked to do (ie, placebo controls). Furthermore, due to poor health care services and the lack of availability of drugs and essential medical supplies, parents may consent to children’s participation to receive care. The desperation of parents and children may result in their disregard of the risks of participation in an experimental intervention31; therefore, researchers must make every effort to ensure that participants clearly understand the risks and possible benefits of participation. To ensure that valid, informed consent/assent is obtained, investigators and institutional ethics research boards must also ensure that studies are scientifically and ethically valid in terms of their design so that neither participation nor nonparticipation is associated with undue risks or disadvantages. Researchers must also consider the role of the child in agreeing to research participation and how the child’s role evolves as she or he develops within the sociocultural context. Typically, assent of minors must accompany consent from a legal guardian (ie, proxy consent) where possible.10 Older children are typically involved in the decision-making process for research participation through pediatric assent. The assent process depends on the child’s decision-making capacity and the complexity of the research project.19 Evidence suggests that the capacity to provide meaningful consent matures beyond 14 years of age but is very limited before 9 years of age43; children 9 to 14 years of age will vary in their ability to provide consent/assent. Pediatric consent/assent protocols vary widely among research institutions and between countries, and research ethics guidelines and boards vary widely on the autonomy and appropriateness of children to make these decisions. For example, in Tanzania an individual younger than 18 years can only participate in research if he or she has the consent of a parent or official guardian (even young women who are younger than 18 years and who are married with their own children need the consent of a parent to participate in a research study). In contrast, in Canada, such an individual would be considered a mature minor (unless he or she displayed permanently diminished capacity) and could consent independently to research participation. In low- and middle-income countries, particularly countries where there has been significant disruption due to armed conflict or environmental disasters, obtaining valid consent from a legal guardian can be a challenge. With research on vulnerable populations, such as orphans, street children, and runaways, it may difficult and possibly even undesirable to seek consent from legal guardians. In these situations, should children be allowed to consent alone, without guardian consent, if they are deemed competent and if the risks of participating in the research are deemed to be minimal by an appropriate research ethics board? The answer may depend on the perspectives of the local community, which should be sought before engaging vulnerable pediatric populations in research.44 Finally, dissent—displaying a desire (verbally or nonverbally) not to take part in research—should be respected. For children, particularly young children, fully

PGCH_ch17_299-320.indd 308

8/20/18 8:16 AM

309 Chapter 17: Ethical Research in Global Child Health

articulating the reasons for dissent is not required to end their participation in research. However, reasons for dissent should be explored to determine their validity, and parents might be able to assist in making children more comfortable or in determining whether research should continue. Researchers must understand that even if the benefits of the respective research are clear and have been justified beyond reasonable doubt, the rights of individuals (ie, the right to participation) should not be jeopardized.

Protection From Harm Ethical global child health research seeks to ensure that the research activity brings about good and does no harm. Identifying benefits and harms to children participating in research is not always straightforward, and the processes that are put in place to protect children from harm can act as barriers to children’s participation in research.20 Furthermore, a protectionist stance can result in children not being allowed to express their own views on matters of concern to them. A WHO report provides a framework for assessing potential harms and benefits that includes 4 key steps.45 The first involves building a transdisciplinary team and, it can be argued, a transcultural team. In addition to the involvement of different disciplines, such a team brings perspectives that incorporate cultural aspects and offers the opportunity to address research, educational, and clinical care nuances to sharpen research questions, augment curricular relevance, and enhance compassion and quality of care. Such a team is essential during the planning of a research project to assist in the identification of context-specific unintended harms and benefits and to begin to map the important interactions and reactions that occur between underlying contextual factors and research/intervention mechanisms. This allows the research team to adapt its research to local factors and mitigate potentially unintended harmful consequences. The second step is collective brainstorming (see Appendix C) on potential unintended harms and benefits and prioritizing them according to their perceived likelihood, importance, and interactions within the research context. The third step is incorporating unintended consequence factors by adapting and redesigning the research study. Discussions surrounding context, underlying factors, and unintended harms and benefits should be used to incorporate additional research design elements that will help to mitigate unintended harms, maximize synergistic relationships, and foster positive outcomes that are culturally grounded. Finally, the research team should undertake a process of unintended harm conceptual mapping. In other words, the prioritized unintended harms, underlying factors, and recommended adaptations should be shaped into a conceptual map that allows the team to anticipate relationships and reactions between and among the research components and harmful unintended consequences. This process should be revisited throughout the research project to determine if any unidentified unintended harms emerge. The research team should examine the proposed research methods and use the least invasive techniques or methods to minimize harm and increase benefits to participating ­children. For instance, if blood spots or unprovoked urine can provide the required data for the study, the use of whole blood sampling and provoked urine sampling should be discouraged.

PGCH_ch17_299-320.indd 309

8/20/18 8:16 AM

310 Part 4: Models for Global Health Research

Privacy/Confidentiality Respecting the privacy and confidentiality of children demands that researchers are sensitive to these issues during the planning and data collection phases of the study. Privacy is a basic human right articulated in the UNCRC, and ethical child health research needs to ensure that children share only the information that they wish to when participating in research activities and that the information that they share is respected and safeguarded. Other individuals, including parents and health care professionals, may be interested in the data, but researchers are obliged to treat this information carefully and retain confidentiality. The types of data that are collected can also create ethical concerns with regard to how much information children wish to share. For example, the collection of biological samples such as DNA raises ethical issues about possible future use of such samples, and the need for longer term protection of privacy to minimize or ideally eliminate any future risk of genetic discrimination. For example, re-consenting when the age of 18 years is achieved is an established process for those who participated in research as minors. The setting and methods used to collect data also have implications in terms of privacy and confidentiality. The research setting should allow children to provide information in a safe and private location. Participants’ privacy should be ensured through confidentiality and anonymity. This is particularly important in research studies that explore topics that are potentially stigmatizing, such as research related to sexuality or HIV/AIDS.16 Respecting privacy and confidentiality in research involving focus groups requires additional considerations and is particularly important in close-knit communities and on topics that may be sensitive. Although privacy is a key factor in ethical research, in some cultural contexts it may not be the usual experience within families or communities. Parents or other family members may participate in interviews because of cultural customs, power relations, the view that the status of children precludes privacy, or the belief that adults are able to provide “correct” answers. In such situations, family and cultural considerations must be carefully weighed and considered in the context of the particular study to ensure that risks are minimized and benefits maximized by whatever actions taken to ensure the child’s privacy. A significant ethical issue in the literature is the dilemma around the issue of confidentiality if a child participant discloses abuse, risk of harm, or other unsafe or criminal activities. The researcher must decide whether to share the information and, if so, with whom. This is particularly contentious, as opinions, practices, and legal requirements on breaching confidentiality to report suspected child abuse and neglect differ across international contexts. For example, in Canada and the United States, everyone has a duty to report suspected child abuse or neglect under child welfare laws. This may not be the case for researchers in other jurisdictions and countries.46,47 There are many views about confidentiality and reporting concerns in research involving children. Some researchers prioritize the participants’ autonomy and preservation of confidentiality. When encountering a situation of suspected child abuse or other unsafe activity, they may encourage the child to talk to appropri-

PGCH_ch17_299-320.indd 310

8/20/18 8:16 AM

311 Chapter 17: Ethical Research in Global Child Health

ate adults, or agree to talk to appropriate adults if the child agrees to further disclosure.48 Other researchers recommend informing participants (ie, children and their consenting parents) explicitly about the limits of confidentiality prior to starting data collection and the actions that will be taken if any safety concerns are noted. This lack of consistency between researchers and across international contexts underscores the need for researchers to be aware of the requirements of mandated reporting and to consider the issue of reporting prior to undertaking data collection, as well as creating a protocol to follow if they encounter a child who is at risk of harm. Finally, all researchers must be cognizant of potential breaches in the privacy of participants as a result of dissemination of research findings. Privacy includes making sure that participants are anonymous and not identifiable in research reports. With certain types of research (eg, investigations related to sexuality, HIV/AIDS), identification of a particular child, family, or community to powerful groups (eg, government departments, community leaders) could do significant harm and compromise the well-being of the individuals who participated in the research. Particular attention needs to be given to the use of photographs that could identify people or local landmarks. Children sometimes want to have their real names used in publications and research reports. In such situations, parents and health care professionals may be willing to waive anonymity if they perceive that the lack of anonymity may bring sufficient benefits to warrant this. However, before the identity of a child is revealed, discussions of the potential risks and long-term implications of such disclosure should be undertaken with the child and legal guardians.

Payment and Gifts To date, there is no clear consensus in the research literature on whether children should be paid for their participation in research, and ethics boards have different criteria as to what payment or compensation individuals can receive for their participation. Four types of payment have been identified in the research literature: reimbursement, compensation, appreciation, and incentive (see Appendix C for the 4 terms).49 Each of these has ramifications for ethical practice that need to be considered. Researchers also need to consider the implications of these payments in different social and cultural contexts and address compensation in ways that are appropriate to the local context. For example, in low- and middle-income countries where children may be involved in the economic support of their family or living in a poverty situation, participation in research may take children away from productive work that supports the family. In such cases, compensation for the time that they would be earning money is necessary to ensure that the children are not disadvantaged in any way for participating in research.50 By accessing and consulting with local communities or local community consultations boards, researchers are better able to determine the types of compensation that may be appropriate to children and their families. Furthermore, in situations of extreme poverty, researchers need to take into account the implications within the community of compensation to research participants.

PGCH_ch17_299-320.indd 311

8/20/18 8:16 AM

312 Part 4: Models for Global Health Research

The provision of compensation could result in skewed sample sizes and research findings, as well as participants not attending to the risks involved in the study because of the monetary benefits associated with participation.51 Providing research participants or their families with compensation may also fuel tension and resentment in a community.52 Therefore, researchers may choose to provide a payment to schools or community groups, which would benefit not only the children involved in the research but also the community at large. For example, in Tanzania, research ethics boards and committees discourage the provision of incentives or gifts to participants, as it is viewed as buying information. Furthermore, it is recommended that any gifts or incentives should be provided to all individuals targeted by the research even if they were not recruited to participate. The idea is to minimize inequity and avoid the indirect coercion of individuals to participate in the research project. If incentives or gifts are provided, it is recommended that they be given at the end of the research and not at the beginning.

Effect of Global Child Health Research on Society Researchers involved in pediatric research projects need to consider the levels at which their projects affect society. They need to ask, “What are the direct effects of the research on the individual child?” (ie, to what extent can this child benefit from a particular experimental intervention?). The second question is the potential effect of the research on expected health outcomes among children in the local community and country (ie, could the outcomes of the study improve child health in the region?). Finally, the outcome of the research is not only the application of the knowledge acquired but also the act of doing the study itself. Therefore, researchers must ask themselves, “How will simply conducting a particular pediatric research project affect the local community?” For example, will providing active treatment to some members of a community and placebo treatment to others result in significant community discord or conflict? Furthermore, it is the responsibility of global child health investigators to take an interest in the general health and welfare of the population as a whole and to take into account the effect of nonmedical factors, such as the local environment, on the health of children and all individuals in the community. Our own research, which investigated mercury and arsenic contamination in water, soil, and food sources in artisanal gold-mining areas in Tanzania, found that many local water wells were contaminated, resulting in widespread community exposure to these contaminants.53 Provision of this information to the local community resulted in these wells being abandoned and the construction of 2 new safe wells, which had a positive effect on the health of children and the community at large.

Methodology and Ethics Methodology and ethics are integrally linked. It has been suggested that “bad science is bad ethics”; the implication is that for a study to be considered ethical, researchers need to consider whether the research questions are worth asking and if the methods used are an effective way of answering the research questions.

PGCH_ch17_299-320.indd 312

8/20/18 8:16 AM

313 Chapter 17: Ethical Research in Global Child Health

Examination of the pediatric health research literature reveals 3 approaches that have been used to engage children in health-related research: research on children, research with children, and research by children.54 Research on children asks adults such as parents, teachers, and physicians to discuss children’s views, interests, and priorities.48 This approach has been used in qualitative and quantitative research and across various health care disciplines in low-, middle-, and high-income countries. Research on children is valid given that primary caregivers and other individuals who work with children, such as teachers and physicians, have intimate knowledge of children’s lives, which can provide important information on their physical and mental health and the acceptability of the health care interventions that they receive. Such research is particularly relevant with infants and young children who may not be able to directly respond to researchers’ questions. However, these methods do not allow the researcher to gain a full picture of children’s perspectives. Research with children seeks to understand children’s ways of knowing from the perspective of the child.48 It provides children with the opportunity to be heard and values the voice of the child, which can differ from that of adults. It can also provide new insights into children’s worlds and into their relationships with the adult world. Although research with children is conducted in many high-­ income countries, its use in low- and middle-income countries is relatively limited. A lack of regulatory mechanisms, difficulties in ensuring confidentiality, conceptualizations of childhood, and the inferior social status of children are issues that make the conduct of research with children more challenging in these countries. It is important to recognize, however, that research with children is framed by adult concerns. Adult researchers organize, interpret, and are the authoritative voice on the children’s world.54 Critical reflection on the issue of children’s voice and representation in research has led to a growing trend in participatory research—research by children. Participatory research actively encourages participants to set the research agenda and includes children as coresearchers or primary researchers. Child participants are able to act as research advisors, design the research study, direct the analysis, and disseminate the findings. Research by children involves the development of an equitable partnership between children and adult researchers. The benefits of such research are that it enables a greater understanding of children’s perspectives and helps prioritize children’s agendas in policies and practices.54 Research by children relies on open, clear, and consistent communication among coresearchers and is emerging in low- and middle-income countries. For example, Project SHINE (Sanitation and Hygiene Innovation in Education), out of the University of Calgary, is using a school-based participatory science education, empowerment, and social entrepreneurship model of health promotion among the children of Maasai pastoralists, their families, and the community at large in the Ngorongoro Conservation Area in Tanzania. This project aims to improve sanitation and hygiene and prevent parasitic infection through engaging youth as change agents in the local community.

PGCH_ch17_299-320.indd 313

8/20/18 8:16 AM

314 Part 4: Models for Global Health Research

Ethics Mechanisms The conduct of ethical child health research demands that specific processes be followed. The guiding document in Canada for the ethical conduct of human research is the Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans.14 All human research in Canada must adhere to these guidelines and must undergo research ethics board review. As part of its mandate, the research ethics board also reviews the scholarly nature of the research.19 This scientific review recognizes that poorly conducted research has the potential to be harmful because it exposes participants to procedures that will not provide reliable or valid knowledge and also wastes resources. Research initiated by international organizations or undertaken in collaboration with local researchers in low- and middle-income countries requires that the projects be approved by several ethics committees. For example, the joint CUHAS/Bugando Medical Centre Joint Ethics Review Committee, the National Institute for Medical Research in Tanzania, and the University of Calgary Conjoint Health Research Ethics Board approve joint research projects on maternal and child health involving faculty from CUHAS and the University of Calgary. The ethical standards and procedures of Tanzania, Canada, and WHO are adhered to so risk is minimized and harm is prevented. Furthermore, for all research conducted in Tanzania, a research permit granted by the Tanzania Commission for Science and Technology is required and permission to conduct the research must be obtained from the relevant local health authorities at the regional, district, and national level. Researchers work with the village/­ community health workers, local health care professionals, and community leaders to ensure that the research project is feasible and acceptable by the local community, and does not place an extreme burden on local health care workers and facilities. To ensure that ethical standards in research are met and maintained, researchers are required to disclose potential conflicts of interest (COI). Historically, COI have been thought of as being associated with financial gains. However, they are being recognized as encompassing a broad scope of issues, including personal and academic gain and stature within the community.14 There is also potential for institutional COI (eg, allowing pharmaceutical companies to drive the academic agenda of the institution). Clinicians who are also researchers must be aware that their clinical relationships with parents or children may be COI and take steps to minimize this.

The Way Ahead There have been many positive changes in global child health research in recent years, including increasing attention and emphasis internationally on the importance of involving children in research. Research involving children is vital for understanding children’s lives and ensuring their right to participate in matters

PGCH_ch17_299-320.indd 314

8/20/18 8:16 AM

315 Chapter 17: Ethical Research in Global Child Health

that affect them. National and international organizations and researchers have played a critical role in the development of ethical guidelines for research involving children; however, there is a need to have internationally agreed-on ethical guidelines and principles that reflect respect and regard for children in every given research context. Leading-edge documents, such as the Ethical Research Involving Children compendium,16 provide the opportunity for international dialogue on the difficult and challenging issues that are faced when performing research that involves children, particularly children from low- and middle-­ income countries and those in disadvantaged/underrepresented communities of high-income countries. This compendium includes the International Charter for Ethical Research Involving Children, which outlines 7 key commitments aimed at elevating the status, rights, and well-being of children involved in research. ▶▶ Ethics in research involving children is everyone’s responsibility. ▶▶ Respecting the dignity of children is core to ethical research. ▶▶ Research involving children must be just and equitable. ▶▶ Ethical research benefits children. ▶▶ Children should never be harmed by their participation in research. ▶▶ Research with children must always obtain children’s informed and ongoing assent or consent. ▶▶ Ethical research requires ongoing reflection; that is, researchers must continually reflect on the assumptions, values, beliefs, and practices that influence the research process and affect children. The Ethical Research Involving Children compendium also provides researchers with questions that can be used by research teams to design and implement ethical research practices and with case studies contributed by other researchers that can assist research teams in reflecting on difficult and contested ethical issues in global child health research. A primary goal of research in all countries should be to improve the health status of the population, particularly children, and thereby reduce any equity gaps. The application of bioethical principles is an essential step in the process.1 The present inequities in global health and resource allocation are incompatible with the core principles that underlie global child health research: respect, benefit, and justice. To fulfil these ethical principles and reduce the equity gap among low-, middle-, and high-income countries and within these countries, partnerships that involve all current stakeholders in global child health research, including governments, granting agencies, the pharmaceutical industry, and researchers, need to be established. Continued development of local capacity for child health research and reviewing the ethics of such research is a fundamental step to improving global child health research. Local capacity could be strengthened through the development of international and regional partnerships and through the strengthening of research and bioethics training in local undergraduate and postgraduate medical

PGCH_ch17_299-320.indd 315

8/20/18 8:16 AM

316 Part 4: Models for Global Health Research

and public health training programs. In addition, there is a need for the development of innovative Internet-based training models for bioethics that are cost-­ effective and can be delivered to local health care professionals. Furthermore, communities globally need to be supported in adopting and taking ownership of ethical principles/guidelines. There continues to be need for health research on diseases affecting pediatric populations in low- and middle-income countries, as well as underserved populations in high-income countries, and significant global inequities continue to exist in mortality, quality of life, and disease incidence, despite increasing levels of overall wealth.55 Even today, only a small portion of health research addresses the problems affecting the world’s poorest people. New technologies, such as genetics and genomics, may be one way to address these imbalances; however, there are a number of emerging ethical issues associated with human genetics and genomics research. Genetics and genomics research spans a broad range of activities, including epidemiological studies of large populations, gene identification projects, newborn and population screening, and the development and testing of new therapies for genetic disorders such as gene therapy. Genetic research is unique in many ways, as an individual’s, family’s, and even a community’s DNA are unique and, therefore, inherently identifiable. Genetic research in children, therefore, raises specific ethical challenges, including issues related to consent, privacy, and the collection and storage of biological samples and genomic data.56,57 Over the past decade, the WHO Human Genetics Programme has been involved in providing extensive research guidance into the ethical, legal, and social implications of genomics research.58 This has resulted in improved understanding of how to address specific participant and researcher concerns when developing and implementing genetics and genomics studies in children.57 Although global efforts to harness the power of genomics to understand human diseases have occurred over the past decade, few studies have focused on priority diseases for low-income countries. For low-income countries to benefit from genomics initiatives, addressing specific issues related to human genomics research in these countries must be a priority. A review of these issues by de Vries et al56 highlights the following challenges for human genomics research: ▶▶ The need to protect the interests of the research participants, including addressing barriers to obtaining informed consent in settings that often include low literacy rates, particularly related to genetic and genomic concepts ▶▶ The frequent involvement of multinational teams in the research with a need to send samples overseas ▶▶ The need to protect local researchers’ interests and to develop local genetics research capacity. These challenges were highlighted in a qualitative study of research participants from Mali who participated in the Malaria Genomic Epidemiology Network (MalariaGEN) study. In this study, the parents of pediatric participants and the research assistants had differing understandings of the causes of malaria,

PGCH_ch17_299-320.indd 316

8/20/18 8:16 AM

317 Chapter 17: Ethical Research in Global Child Health

the rationale for collecting samples, the purpose of the study, and the kinds of information the study would generate compared to the researchers.59 As one research assistant stated, “I was told that the blood sample will be used for genomic research, but I do not know exactly what genomics means.” The challenges and the lessons learned from projects such as the H3Africa60 (a consortium of researchers focused on applying genomics methodologies to diseases affecting African people) provide valuable insights into how to overcome the challenges associated with genetics/genomics research. A genetics research consent template has been developed and strategies for obtaining consent and explaining genetics/genomics in consent documents for low literacy settings are available.61 Research involving transfer of samples or data internationally may also benefit from the development of material transfer agreements describing the nature of the work to be carried out, as well the ultimate disposition of biological samples and data.56 Finally, all projects should also aim to develop local capacity and research expertise in genomics to further the opportunity of low-income countries to benefit from the advances in this field.

Conclusion Over the last decade, there has been a heightened awareness of the ethical issues posed by global child health research. The challenge now is to develop a plan that extends the ethics debate to larger issues such as global equity, justice, respect, and human rights for all children. It is important to link the issues of health, health research, ethics, and equity.1 To ensure that child health research initiatives in all countries are ethical, relevant, and meaningful, bioethics and research capacity must be strengthened in all countries; child health research must be linked to community needs in a transparent and participatory process; there must be ongoing communication among ethicists, researchers, and local communities; and the clear goal of all research activities must be the reduction in global inequities.1,20

References 1. Bhutta ZA. Ethics in international health research: a perspective from the developing world. Bull World Health Organ. 2002;80(2):114–120 2. Chen L, Berlinguer G. Health equity in a globalizing world. In: Evans T, Whitehead M, Diderichsen F, Bhuiya A, Wirth M, eds. Challenging Inequities in Health: From Ethics to Action. Oxford, United Kingdom: Oxford University Press, 2001:35–44 3. Canadian Coalition for Global Health Research. CCGHR Principles for Global Health Research. http://www.ccghr.ca/wp-content/uploads/2015/10/CCGHR-Principles-for-GHR-FINAL.pdf. Published November 2015. Accessed June 26, 2018 4. Global Forum for Health Research, World Health Organization. The 10/90 (Ten Ninety) Report on Health Research 2001-2002. Geneva, Switzerland: Global Forum for Health Research; 2002. http://apps.who.int/iris/handle/10665/44385. Accessed June 26, 2016 5. Gitterman DP, Greenwood RS, Kocis KC, Mayes BR, McKethan AN. Did a rising tide lift all boats? The NIH budget and pediatric research portfolio. Health Aff (Millwood). 2004;23(5):113–124 6. Belli PC, Bustreo F, Preker A. Investing in children’s health: what are the economic benefits? Bull World Health Organ. 2005;83(10):777–784

PGCH_ch17_299-320.indd 317

8/20/18 8:16 AM

318 Part 4: Models for Global Health Research

7. World Health Organization. Identifying priorities for child health research to achieve Millennium Development Goal 4. http://apps.who.int/iris/bitstream/handle/10665/44201/9789241598651_eng. pdf;jsessionid=CA2F3B63AF76616880209BDBC566A045?sequence=1. Published March 2009. Accessed June 26, 2018 8. Beecher HK. Ethics and clinical research. N Engl J Med. 1966;274(24):1354–1360 9. Council for International Organizations of Medical Sciences. International ethical guidelines for biomedical research involving human subjects. Bull Med Ethics. 2002;(182):17–23 10. World Medical Association. WMA Declaration of Helsinki—ethical principles for medical research involving human subjects. https://www.wma.net/policies-post/wma-declaration-of-helsinkiethical-principles-for-medical-research-involving-human-subjects. Accessed June 26, 2018 11. Council for International Organizations of Medical Sciences. International Ethical Guidelines for Biomedical Research Involving Human Subjects. Geneva, Switzerland: Council for International Organizations of Medical Sciences; 2002. https://cioms.ch/shop/product/international-ethicalguidelines-for-biomedical-research-involving-human-subjects-2. Accessed June 26, 2018 12. National Institutes of Health. Regulations, Policies, and Guidance. Ethical Guidelines and Regulations. https://humansubjects.nih.gov/ethical-guidelines-regulations. Updated May 5, 2016. Accessed July 3, 2018 13. Tanzania National Health Research Forum. Guidelines on Ethics for Health Research in Tanzania. 2nd ed. 2009. https://clinregs.niaid.nih.gov/sites/default/files/documents/tanzania/G-EthicsHR.pdf. Accessed July 16, 2018 14. Canadian Institutes of Health Research, Natural Sciences and Engineering Research Council of Canada, Social Sciences and Humanities Research Council of Canada. Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans (TCPS2 2014). http://www.pre.ethics.gc.ca/pdf/eng/ tcps2-2014/TCPS_2_FINAL_Web.pdf. Published 2014. Accessed June 26, 2018 15. Farrell A, ed. Ethical Research with Children. Maidenhead, Berkshire, United Kingdom: Open University Press; 2005 16. Graham A, Powell MA, Taylor N, Anderson D, Fitzgerald R. Ethical Research Involving Children. Florence, Italy: United Nations Children’s Fund Office of Research—Innocenti; 2013. https://www.unicef-irc.org/publications/pdf/eric-compendium-approved-digital-web.pdf. Accessed June 26, 2018 17. The Nuremberg Code. Trials of War Criminals before the Nuremberg Military Tribunal under Control Council Law No. 10. Washington, DC: US Government Printing Office; 1949 18. Diekema DS. Conducting ethical research in pediatrics: a brief historical overview and review of pediatric regulations. J Pediatr. 2006;149(1 Suppl):S3–S11 19. Ethical issues in health research in children. Paediatr Child Health. 2008;13(8):707–720 20. Powell M, Fitzgerald R, Taylor N, Graham A. Ethical Issues in Undertaking Research with Children and Young People. Dunedin, NZ: Childwatch International Research Network, Southern Cross University, Centre for Children and Young People, Lismore NSW and University of Otago, Centre for Research on Children and Families; 2012. https://epubs.scu.edu.au/cgi/viewcontent. cgi?article=1041&context=ccyp_pubs. Accessed July 3, 2018. 21. Bauchner H, Sharfstein J. Failure to report ethical approval in child health research: review of published papers. BMJ. 2001;323(7308):318–319 22. Dingemann J, Dingemann C, Ure B. Failure to report ethical approval and informed consent in paediatric surgical publications. Eur J Pediatr Surg. 2011;21(4):215–219 23. American Academy of Pediatrics Committee on Bioethics. Informed consent in decision-making in pediatric practice. Pediatrics. 2016;138(2):e20161484 24. McIntosh N, Bates P, Brykczynska G, et al. Guidelines for the ethical conduct of medical research involving children. Royal College of Pediatrics, Child Health: Ethics Advisory Committee. Arch Dis Child. 2000;82(2):177–182 25. National Council on Bioethics in Human Research. Consent Panel Task Force. Report on Research Involving Children. Ottawa, ON: National Council on Bioethics in Human Research; 1992 26. Lundy L, McEvoy L. Childhood, the United Nations Convention on the Rights of the Child, and research: what constitutes a ‘rights-based’ approach? In: Freeman M, ed. Law and Childhood Studies. Current Legal Issues. Vol 14. Oxford, United Kingdom: Oxford University Press; 2012:75–91

PGCH_ch17_299-320.indd 318

8/20/18 8:16 AM

319 Chapter 17: Ethical Research in Global Child Health

27. Ennew J, Plateau D. “I Cry When I Am Hit”: Children Have the Right to Be Properly Researched. Paris, France: UNESCO: 2005. https://resourcecentre.savethechildren.net/sites/default/files/ documents/the_right_to_be_properly_researched_-_paper_for_unesco_publication1.pdf. Accessed June 26, 2018 28. Alderson P. Designing ethical research with children. In: Farrell A, ed. Ethical Research with Children. Maidenhead, Berkshire, United Kingdom: Open University Press; 2005:27–36 29. Hill M. Ethical challenges in social constructivist research with children. In: Freeman M, Mathison S, eds. Researching Children’s Experiences. New York, NY: Guilford Press; 2009:69–86 30. Bell N. Ethics in child research: rights, reason and responsibilities. Child Geogr. 2008;6(1):7–20 31. Roth D. An ethics-based approach to global child health research. Paediatr Child Health. 2003;8(2):67–71 32. Aripin KN, Choonara I, Sammons HM. A systematic review of paediatric randomised controlled drug trials published in 2007. Arch Dis Child. 2010;95(6):469–473 33. Black RE. The legacy of the Child Health and Nutrition Research Initiative (CHNRI). J Glob Health. 2016;6(1):010101. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4766789. Accessed July 16, 2018 34. Smyth RL, Weindling AM. Research in children: ethical and scientific aspects. Lancet. 1999;354(Suppl 2):SII21–SII24 35. Global Network of WHO Collaborating Centres for Bioethics. Global Health Ethics: Key Issues. Geneva, Switzerland: World Health Organization; 2015. http://apps.who.int/iris/ bitstream/10665/164576/1/9789240694033_eng.pdf. Accessed June 26, 2018 36. Brewster D. Science and ethics of human immunodeficiency virus/acquired immunodeficiency syndrome controversies in Africa. J Paediatr Child Health. 2011;47(9):646–655 37. Laraque D, Mitchell J. A matter of trust: mandatory HIV testing. Arch Pediatr Adolesc Med. 1996;150(5):556–557 38. Magesa SM, Wilkes TJ, Mnzava AE, et al. Trial of pyrethroid impregnated bednets in an area of Tanzania holoendemic for malaria. Part 2. Effects on the malaria vector population. Acta Trop. 1991;49(2):97–108 39. Guay LA, Musoke P, Fleming T, et al. Intrapartum and neonatal single-dose nevirapine compared with zidovudine for prevention of mother-to-child transmission of HIV-1 in Kampala, Uganda: HIVNET 012 randomised trial. Lancet. 1999;354(9181):795–802 40. Fawzi WW, Chalmers TC, Herrera MG, Mosteller F. Vitamin A supplementation and child mortality. A meta-analysis. JAMA. 1993;269(7):898–903 41. Strauss RP, Sengupta S, Quinn SC, et al. The role of community advisory boards: involving communities in the informed consent process. Am J Public Health. 2001;91(12):1938–1943 42. Leach A, Hilton S, Greenwood BM, et al. An evaluation of the informed consent procedure used during a trial of a Haemophilus influenzae type B conjugate vaccine undertaken in The Gambia, West Africa. Soc Sci Med. 1999;48(2):139–148 43. Kuther TL, Posada M. Children and adolescents’ capacity to provide informed consent for participation in research. Adv Psychol Res. 2004;32:163–173 44. Vreeman R, Kamaara E, Kamanda A, et al. Community perspectives on research consent involving vulnerable children in Western Kenya. J Empir Res Hum Res Ethics. 2012;7(4):44–55 45. Alliance for Health Policy and Systems Research, World Health Organization. Systems Thinking for Health Systems Strengthening. de Savigny D, Adam T, eds. Geneva, Switzerland: World Health Organization; 2009. http://www.who.int/alliance-hpsr/resources/9789241563895/en. Accessed June 26, 2018 46. World Health Organization. Child abuse and neglect by parents and other caregivers. In: World Report on Violence and Health. Geneva, Switzerland: World Health Organization; 2002:74–75. http://www.who.int/violence_injury_prevention/violence/world_report/en/. Accessed June 26, 2018 47. Dubowitz H, ed. World Perspectives on Child Abuse. 11th ed. Aurora, CO: International Society for the Prevention of Child Abuse and Neglect; 2014:356 48. Fargas-Malet M, McSherry D, Larkin E, Robinson C. Research with children: methodological issues and innovative techniques. J Early Child Res. 2010;8(2):175–192

PGCH_ch17_299-320.indd 319

8/20/18 8:16 AM

320 Part 4: Models for Global Health Research

49. Centre of Genomics and Policy (CGP), Maternal Infant Child and Youth Research Network (MICYRN). Best Practices for Health Research Involving Children and Adolescent: Genetics, Pharmaceutical, Longitudinal Studies and Palliative Care Research, 2012. Avard D, Samuel J, Black L, Griener G, Knoppers B, eds. 2012. http://www.genomicsandpolicy.org/en/best-practices-2012. Accessed June 26, 2018 50. Porter G, Hampshire K, Bourdillon M, et al. Children as research collaborators: issues and reflections from a mobility study in sub-Saharan Africa. Am J Community Psychol. 2010;46(1–2):215–227 51. Pandya M, Desai C. Compensation in clinical research: the debate continues. Perspect Clin Res. 2013;4(1):70–74 52. Clacherty G, Donald D. Child participation in research: reflections on ethical challenges in the southern African context. Afr J AIDS Res. 2007;6(2):147–156 53. Nyanza EC, Dewey D, Thomas DS, Davey M, Ngallaba SE. Spatial distribution of mercury and arsenic levels in water, soil and cassava plants in a community with long history of gold mining in Tanzania. Bull Environ Contam Toxicol. 2014;93(6):716–721 54. Clavering EK, McLaughlin J. Children’s participation in health research: from objects to agents? Child Care Health Dev. 2010;36(5):603–611 55. Berlinguer G. Bioethics, health, and inequality. Lancet. 2004;364(9439):1086–1091 56. de Vries J, Bull SJ, Doumbo O, et al. Ethical issues in human genomics research in developing countries. BMC Med Ethics. 2011;12:5 57. Knoppers BM, Avard D, Cardinal G, Glass KC. Science and society: children and incompetent adults in genetic research: consent and safeguards. Nat Rev Genet. 2002;3(3):221–225 58. World Health Organization. Human genomics in global health. Tools and resources. http://www.who.int/genomics/elsi/en. Accessed June 26, 2018 59. Traore K, Bull S, Niare A, et al. Understandings of genomic research in developing countries: a qualitative study of the views of MalariaGEN participants in Mali. BMC Med Ethics. 2015;16:42 60. H3Africa. Human heredity and health in Africa. https://h3africa.org. Accessed July 3, 2018 61. Munung NS, Marshall P, Campbell M, et al. Obtaining informed consent for genomics research in Africa: analysis of H3Africa consent documents. J Med Ethics. 2016;42(2):132–137

PGCH_ch17_299-320.indd 320

8/20/18 8:16 AM

321

CHAPTER 18

The GHESKIO Centers for Research in Haiti: An Education and Research Model in Action Vanessa Rouzier, MD Virginia Young, MLS Jean William Pape, MD

abstract GHESKIO (Groupe Haitien d’Etude du Sarcome de Kaposi et des Infections Opportunistes/The Haitian Group for the Study of Kaposi’s Sarcoma and Opportunistic Infections) Centers, founded in 1982, is one of the oldest institutions dedicated to the fight against HIV/AIDS. GHESKIO has 3 main objectives: patient care, training of medical personnel and community leaders, and operational research. GHESKIO efforts are focused on 4 of the most important diseases in Haiti: diarrheal diseases, HIV/AIDS, other sexually transmitted infections (STIs), and tuberculosis (TB). The emphasis is on the family because the diseases that the GHESKIO Centers are concerned with are likely to be spread in the family setting. From its inception, GHESKIO Centers have been affiliated with Cornell University Weill Cornell Medical College and the Haitian Ministry of Public Health and Population (MOPHP). GHESKIO is an official nongovernmental organization recognized by the Haitian government and working in close collaboration with the Haitian MOPHP, which has provided GHESKIO with facilities at the university hospital and at the National Institute Research Laboratory. GHESKIO is the country’s referral center and the Caribbean-leading institution for treatment and research in HIV/AIDS, STIs, TB, and diarrheal diseases. In the 36 years since its inception, the GHESKIO Centers have continued to evolve and grow despite the challenging sociopolitical and economic conditions of the country. Haiti is the poorest nation in the western hemisphere, with 80% of the population living under the poverty line and 54% in abject poverty.1–3 Haiti has the most significant HIV and TB epidemics outside of Africa. In addition, in the past 6 years, Haiti has weathered 3 of the most devastating natural catastrophes in recent times, including a magnitude 7.0 earthquake in 2010, the largest and deadliest cholera epidemic that same year, and a devastating category-5 hurricane, Matthew, in 2016.

PGCH_ch18_321-338.indd 321

8/20/18 8:16 AM

322 Part 4: Models for Global Health Research

The GHESKIO model offers integrated preventive and curative services for HIV, TB, STIs, and diarrheal diseases in 2 campuses located in the north and south of Port-au-Prince. This approach has been expanded to include other notable diseases and services. All services are offered at each site to facilitate access to comprehensive care in a “one-stop shop” approach because the poor often cannot afford to travel to different health facilities for all their families’ needs. In addition to health services for HIV/AIDS, including the provision of antiretroviral therapy, treatment for STIs, TB treatment, psychological care, and reproductive health, support is provided with microcredit opportunities, primary and vocational school scholarships, and community outreach interventions that complete the global health model of GHESKIO. The story of GHESKIO is a model of success despite adversity, addressing significant public health problems and making a difference locally and internationally.

OPERATING PRINCIPLES INCLUDED (SEE PART 1.) 1. Population/epidemiology (population-specific and local data) 2. Polarization (obstacles to sustainability of efforts) 3. Positive strategies (rigorous, evidence based, ethically sound, teachable, replicable, sustainable) 4. Persistence (genuine advocacy) 5. Partnership (respectful, bidirectional modalities) Competencies Addressed: R1, R2, R3, R4 See Chapter 8, Global Health Research Competencies.

Key References Fullman N, Barber RM, Abajobir AA, et al. Measuring progress and projecting attainment on the basis of past trends of the health-related Sustainable Development Goals in 188 countries: an analysis from the Global Burden of Disease Study 2016. Lancet. 2017;390(10100):1423–1459 Hubinette M, Dobson S, Scott I, Sherbino J. Health advocacy. Med Teach. 2017;39(2): 128–135

PGCH_ch18_321-338.indd 322

8/20/18 8:16 AM

323 Chapter 18: The GHESKIO Centers for Research in Haiti: An Education and Research Model in Action

Teaching Points 1 The GHESKIO (Groupe Haitien d’Etude du Sarcome de Kaposi et des Infections Opportunistes/The Haitian Group for the Study of Kaposi’s Sarcoma and Opportunistic Infections) Centers, founded in 1982, is one of the oldest institutions dedicated to the fight against HIV/AIDS.

2 GHESKIO pursued the 3-fold mission of service, training, and translational research to develop and pilot successful models of care around locally relevant public health problems and then scale the models of care up nationally in Haiti.

3 GHESKIO was able to build capacity in a resource-limited setting by developing fair and mutually beneficial strategic partnerships at the local and international levels and avoiding polarization.

4 GHESKIO provides consistent care and high-quality research by adhering to recommended best practices including local and international collaboration, innovation and flexibility, and development of models designed to build capacity by transferring knowledge and technology.

History of GHESKIO and Research Models in Action The GHESKIO (Groupe Haitien d’Etude du Sarcome de Kaposi et des Infections Opportunistes/The Haitian Group for the Study of Kaposi’s Sarcoma and Opportunistic Infections) Centers was founded in 1982 by a group of Haitian health care professionals who were caring for some of the first patients presenting with clinical manifestations of a new disease, which would later be defined as AIDS. Dr Jean William Pape, one of the founders of GHESKIO, was working at the state university hospital in Port-au-Prince where he had established the “Cornell unit” to work on diarrheal diseases in children, which was the leading cause of child mortality at the time (see Diarrheal Diseases in the Effective Strategies: Innovation and Flexibility, Responsiveness to New Challenges, and Advocacy section later in this chapter). In 1981, Dr Pape and his team were asked to assess adult patients with chronic diarrhea, rare opportunistic infections, and Kaposi sarcoma, identifying the first AIDS cases in Haiti. In 1983, GHESKIO researchers published a comprehensive description of these first AIDS cases in the New England Journal of Medicine.4 This was among the first steps that helped disprove the misguided attribution, by the US Centers for Disease Control and Prevention (CDC), of Haitian nationality as a risk factor for contracting this recently discovered syndrome.5–8 While combining clinical care with epidemiological research, GHESKIO researchers were able to provide evidence that “modes of HIV transmission among Haitians were the same as those of other nationalities.”9 The CDC updated AIDS guidelines so Haitians would no longer be categorized as a “risk group” for AIDS.10–12 Ever since, any account of HIV/ AIDS in Haiti is closely intertwined with GHESKIO.

PGCH_ch18_321-338.indd 323

8/20/18 8:16 AM

324 Part 4: Models for Global Health Research

Mission From inception, GHESKIO has pursued the 3-fold mission of service, training, and translational research. The GHESKIO approach has been to develop and pilot successful models of care around locally relevant public health problems and then scale the models of care up nationally in partnership with the Haitian Ministry of Public Health and Population (MOPHP) for a global effect.13 The initial focus was on AIDS and tuberculosis (TB), but the mission has since expanded to include community outreach and now provides maternal-child health, family planning, and reproductive health services; cancer prevention and treatment; immunizations (including human papillomavirus [HPV] and cholera); and primary education through vocational and microcredit programs. In the early years, GHESKIO conducted seminal studies on the treatment and prevention of opportunistic infections that were the hallmarks of AIDS in Haiti: chronic, persistent diarrhea and pulmonary TB. Trials documenting how to prevent and treat these infections in a resource-limited setting were instrumental in helping establish guidelines used by the MOPHP in the national response to the HIV epidemic. Research addressing public health problems not only helps provide locally adapted solutions but also improves the quality of clinical care for patients, as medical and laboratory capacity has been built through participation in clinical trials. All lessons learned at GHESKIO are transmitted to other health professionals and the community via the training center. To ensure that research efforts were and are conducted at the highest level of ethics and quality, GHESKIO instituted an Institutional Review Board in 1983 (the same year the first US National Institutes of Health [NIH] funding was secured) and board members were trained at the Hastings Center.14 GHESKIO researchers have documented their strict adherence to ethical principles while testing innovative interventions for enlisting participants, including illiterate volunteers, and conducting research.15–21 The GHESKIO standards provided a model for the development of the first Haiti National Bioethics Committee in 2001.22–24

Three Pillars of Partnership: Ministry of Public Health and Population, Local Community, and International Collaborations For 36 years, the GHESKIO Centers has been a model of cooperation with the MOPHP and between the public and private sectors and local agencies and private overseas institutions. Strategic partnerships with local, national, and international entities help ensure GHESKIO stability and long-term sustainability.25 This focus on collaboration has averted polarization by involving stakeholders in key decisions and ensuring cooperative prioritization of research efforts that translate into improved clinical care for the benefit of the patients. Instrumental to the local success of GHESKIO is its community engagement via its community advisory board (CAB), which is composed of diverse mem­bers representing all sectors of society.9 Community involvement and direct

PGCH_ch18_321-338.indd 324

8/20/18 8:16 AM

325 Chapter 18: The GHESKIO Centers for Research in Haiti: An Education and Research Model in Action

participation have been central to the conduct of research, its implementation into services, and national scaling up of developed models of care. These local partnerships extend GHESKIO credibility so that research can be conducted with committed individuals who trust that the care provided will benefit not only the individuals themselves but their families and neighbors. More recently, an adolescent CAB has been established to facilitate interventions aimed at reducing vulnerability and stigma in adolescents and young adults, who represent a very vulnerable population in Haiti. Currently, one-third of new HIV infections are occurring in this population. Another key partnership has been the intimate collaboration with the Haitian MOPHP. GHESKIO downtown activities are partly housed in MOPHP facilities, and GHESKIO serves as a technical arm to the ministry, developing national guidelines for public health priorities and working conjointly for their implementation. In 2003, the MOPHP asked GHESKIO to expand its model of HIV care nationally as funding became available through the Global Fund to Fight AIDS, Tuberculosis and Malaria. A network of 20 public and private sites were created and later extended in 2004 with the support of the US President’s Emergency Plan for AIDS Relief (PEPFAR). Today, GHESKIO provides training, supervision, administrative support, financial oversight, and continuing quality control for all HIV and TB clinical services at 25 sites across Haiti. For its contribution to the health care improvements of the country addressing long-term public health challenges and immediate crises such as HIV, TB, and diarrheal diseases, GHESKIO was recognized by the MOPHP as “public utility to the Haitian people” in 2000.9 The Association Médicale Haitienne (Haitian Medical Society) has also been a vital GHESKIO partner.15 Thirdly, international collaboration with universities and academic centers in the United States and France, as well as foreign governments and institutions around the world, has been integral to GHESKIO success and growth. Support for the research, service, and training missions has come from competitive research and training grants from the NIH in the United States, prepared in collaboration with institutions such as Cornell and Vanderbilt universities, the AIDS Healthcare Foundation, the CDC, l’Agence Nationale de la Recherche sur le SIDA, and the Mérieux Foundation. Support has also been obtained from the US Agency for International Development; the French Government’s National Agency for AIDS Research; the Japanese International Cooperation Agency; the World Health Organization (WHO); the World Bank; many UN agencies, including the Pan American Health Organization, the United Nations Children’s Fund, the United Nations Population Fund, and the United Nations Development Programme; the Clinton Foundation; PEPFAR; and the Global Fund. GHESKIO participation and leadership in regional and international networks such as the Trans Caribbean HIV/AIDS Research Initiative, the International Epidemiology Databases to Evaluate AIDS, the AIDS Clinical Trials Group, the HIV Vaccine Trials Network, and the International Maternal Pediatric Adolescent AIDS Clinical Trials Network have strengthened GHESKIO research capacity and effect in the region and abroad.

PGCH_ch18_321-338.indd 325

8/20/18 8:16 AM

326 Part 4: Models for Global Health Research

Effective Strategies: Innovation and Flexibility, Responsiveness to New Challenges, and Advocacy To survive and thrive in Haiti over more than 3 decades, GHESKIO has had to show innovation and flexibility, responsiveness to new challenges, and advocacy. The following research models of comprehensive care illustrate effective GHESKIO strategy.

Diarrheal Diseases The Cornell unit was opened in l’Hôpital d l’Universite d’Etat d’Haiti (HUEH) to do research on the causes of diarrheal diseases. But patient care was quickly added, as mortality was so high and care ­suboptimal. At the time, the only treatment options available to treat children with diarrhea were intravenous (IV) fluids, antibiotics, and antidiarrheal drugs. While care was free at the HUEH, IV fluids and other medicines were not available and had to be purchased at outside pharmacies by the parents. While families scrapped to purchase these, diarrhea continued, leading to severe dehydration and death. The only available alternative at the time was a rehydration solution being evaluated in Bangladesh for adults with cholera.26–28 This solution was evaluated in Haiti after correction for the high sodium and found to be effective in saving lives. Parents were also admitted on the wards with their infants to help provide care and to learn the process (give sips every few minutes). They became the best promoters of oral rehydration treatment! The unit staff members were also trained to recognize and treat associated pediatric diseases that presented with dehydration, such as otitis media, pneumonia, pharyngitis, malaria, measles with pneumonia, meningitis, and typhoid fever.29 This led to dramatic decrease in mortality (from 40% to ,1%) in the study population.15,30 After success at the state hospital, the model was scaled up nationally. In 1982 the program for the control of diarrheal diseases at the national level was implemented with the Cornell unit of the state hospital serving as the training site. Home-based rehydration with oral rehydration solution was an important tenant of the national strategy to decrease diarrhea-related mortality in children. The massive scaling up of this program was largely responsible for the national decrease of infantile mortality from 144 out of 1,000 in 1980 to 60 out of 1,000 in 2000.14 The rate of infant mortality in Haiti recorded in 2016 was 51 out of 1,000.31 The progress made to reduce infant mortality rate is still evident, other than a dramatic spike caused by the 2010 earthquake and related public health crises of the massive displacement of residents of the most densely populated region of Haiti, Port-au-Prince.32 This latter event is notable to emphasize the need to retain infrastructure and effective models, especially during times of crisis and disasters.

Sexually Transmitted Infections Early research at GHESKIO documented that sexually transmitted infections (STIs), in particular ulcerative STIs such as syphilis, lymphogranuloma venereum, and herpes, were associated with a 7-fold increase in transmission of HIV.

PGCH_ch18_321-338.indd 326

8/20/18 8:16 AM

327 Chapter 18: The GHESKIO Centers for Research in Haiti: An Education and Research Model in Action

As diagnostic tests for these diseases were and remain scarce in many resource-limited settings, GHESKIO adapted the WHO algorithm and developed a national guide for the diagnosis and management of STIs based on clinical presentation. This guide is still the national reference and has helped reduce the prevalence of ulcerative STIs to the point of elimination and contributed significantly to the decline of HIV prevalence in Haiti.33,34

Sexual and Reproductive Health Research on STI transmission prompted recognition at GHESKIO of the need for a model of care for those who have experienced rape, including implementation of a postexposure prophylaxis prevention program for the prevention of HIV, STIs, and pregnancy post-rape and post-blood exposure. GHESKIO opened the first and largest center for the care of rape victims.35

HIV HIV testing, spearheaded and expanded at GHESKIO, was vital to identifying and addressing this continuing public health crisis in Haiti. On demonstrating the connection between paid blood donors and HIV transmission, GHESKIO researchers compelled the Haitian MOPHP to cease accepting such donations and cede blood banking management to the Haiti Red Cross Society in 1986.36 Trimethoprim/sulfamethoxazole (TMS) prophylaxis and treatment of opportunistic infections were studied extensively.37–40 The first 1,000 GHESKIO patients on antiretroviral therapy (ART) had a 90%, 75%, and 70% survival rate at 1, 5, and 10 years,41 respectively, showing that resource-limited countries were capable of successful national ART scaling up.9,42,43 Antiretroviral therapy was similarly successful in treatment of infants.44 In 2005, GHESKIO demonstrated that the optimal timing for ART initiation (which resulted in significantly reduced mortality and TB incidence) was sooner than the WHO guideline indicated.45 The guideline was then revised to follow GHESKO timing recommendations.46 GHESKIO also piloted same-day HIV testing and ART initiation, which has become a WHO recommendation.48 GHESKIO led Haiti in applying for the country’s first Global Fund and PEPFAR grants for national scaling up of ART in Haiti, as well as studying the effects of integration of primary care into HIV counseling and testing.47 Primary care integration comprises one part of the comprehensive HIV prevention and care model, which also includes “access to primary and vocational schools, and microcredit loans, all offered at the same site.”47 In 2003, the Haitian MOPHP gained access to international funding to encourage replication of this model throughout Haiti.

Tuberculosis Model of Care Due to the 30% comorbidity of HIV and TB, GHESKIO worked to integrate HIV and TB services and change national guidelines for a 6-month treatment regimen, as well as experimented with same-day diagnosis and treatment.49,50 GHESKIO also initiated a multidrug-resistant TB study and program, which has expanded to become a dedicated hospital.51–53 GHESKIO researchers developed national

PGCH_ch18_321-338.indd 327

8/20/18 8:16 AM

328 Part 4: Models for Global Health Research

guidelines for TB treatment. Research was also conducted on the protective effect of primary and secondary isoniazid prophylaxis for the prevention of TB in HIV-infected individuals.54–56 In 2008, GHESKIO and Partners in Health were approved by the WHO Green Light Committee as the only 2 multidrug-resistant TB treatment centers in Haiti.9 GHESKIO developed an integrated model of care for multidrug-resistant tuberculosis (MDRTB) patients in Haiti. After the 2010 earthquake destroyed the ward where MDRTB patients were being cared for, GHESKIO setup an MDRTB field hospital on the l’Institut des Maladies Infectieuses et de Santé de la Reproduction campus for inpatient care during the initial phase of treatment. Outpatient daily medication adherence was done by trained directly observed therapy agents going to patients’ homes with mobile phones equipped with GPS capture. This model has ensured excellent treatment outcomes and very low rates of patients lost to follow-up.51 All these efforts reflect the innovation and flexibility of the GHESKIO researchers to create an effective ongoing response to the public health challenge of TB, prior to and following the 2010 earthquake, which compounded the TB incidence.57,58

Human Papillomavirus GHESKIO health care professionals, led by Dr Cynthia Riviere, director of the cervical cancer prevention clinic, have participated in a wealth of cancer research, particularly focused on women, and have contributed to publications on the most common causes of cancer in women in Haiti—cervical cancer, which is HPV.59–61 This HPV research and a focus on adolescent health have led to advocacy for HPV vaccination for girls.9 This advocacy involves exploring the acceptability of vaccination and opportunities to engage this age group, which does not typically gather in an organized location such as school.61

Maternal-Child Health Services GHESKIO has provided services to prevent mother-to-child transmission of HIV since 1999, which has resulted in a decrease in mother-to-child transmission from 27% to 2.5% and increased child survival.62–65 GHESKIO has contributed to the development of a guideline for prevention of mother-to-child transmission and established mothers’ clubs to provide integrated health care services to mothers and babies and reinforce a sense of community for participants.9,66 The fellowship of the mothers’ clubs also serves to reduce the stigmatization of HIV and other diseases. Additional GHESKIO maternal-child health studies involved the rapid progression of AIDS and the role of bacterial sepsis in HIV-infected infants. Early infant diagnosis with polymerase chain reaction and an ultrasensitive p24 antigen assay were developed. A 6-month nutritional supplement and support program for HIV-infected infants was shown to promote growth and is now being scaled up.67 The Haitian MOPHP began a program to eliminate congenital syphilis based on GHESKIO evaluation of a rapid test for the diagnosis of syphilis to facilitate testing and treatment of pregnant women.68–72

PGCH_ch18_321-338.indd 328

8/20/18 8:16 AM

329 Chapter 18: The GHESKIO Centers for Research in Haiti: An Education and Research Model in Action

Cholera Following the devastation of the 2010 earthquake, cases of cholera appeared for the first time in Haiti, and the disease spread rampantly before vaccinations and other preventive efforts could control it.73 GHESKIO immediately put into practice the strategic elements of innovation and flexibility along with responsiveness to new challenges and partnerships. The GHESKIO Centers collaborated with the MOPHP and Partners in Health and led the way in the model of care for cholera, which included vaccination, home chlorination, and promotion of hygiene.74–80

Haitian Context The ongoing socioeconomic challenges Haiti faces reflect centuries of conflict over land, leadership, and culture. The history of abuse of the people and natural resources by colonial explorers throughout the Caribbean can be seen in the struggles for a sound economy and quality of life today. Disease and decimation of native populations, continuous enslavement of forced immigrants from Africa, depletion of natural resources and crop viability, and battles over colonial-era French governance set the stage for a victorious rebellion of slaves under ­Toussaint L’Ouverture, Jean-Jacques Dessalines, Henri Christophe, and ­Alexandre Petion. Haiti became the first independent, self-governed nation in the Caribbean and western hemisphere in 1804. While this unprecedented milestone caused fear of similar uprisings in nearby colonial settlements, the Caribbean region outside of Haiti remained under European dominance.1,81 The equivalent today of US $30 million of imposed debt paid by Haiti to the French, as well as the economic and political isolation by the leading economies of the time of the nascent nation of Haiti, served to cripple it and keep it far removed from the industrial revolution.82 Political and social unrest in Haiti persisted through changes in leadership, and the United States intervened in the form of military rule in 1915, beginning an ongoing pattern of overt and hidden involvement that included installing Haitian presidents willing to comply with occupation terms. The US military was regularly besieged throughout its occupation until its departure in 1934; however, the United States has remained heavily involved politically and economically to the present day, enacting what Franck Laraque terms “economic imperialism.”83 Following US troop withdrawal, the United States supported Haitian leaders that favored US interests. Europe’s economic struggles following World War II ensured that the United States would continue as a major power in the Caribbean as European influence declined. The agricultural base of the Haitian economy continued to suffer, as deforestation and overuse of the land for limited crops led to an exodus of peasant farmers from rural lands to urban areas, where employment was in short supply. The move away from an agricultural economy forced an increased reliance on imports (often controlled and unfairly distributed by the Haitian government) and created a lack of food security.83 The oppression of the 2 Duvalier regimes, father FranÇois (“Papa Doc”) and then son Jean-Claude (“Baby Doc”), dominated Haiti from the late 1950s to the

PGCH_ch18_321-338.indd 329

8/20/18 8:16 AM

330 Part 4: Models for Global Health Research

mid-1980s. The elder Duvalier created his own militia and exploited voodoo traditions to suppress opposition.81(p291–292) This period saw the emigration of thousands of Haitians to avoid becoming targets of the regime, including the intellectual elite of Haiti, to Africa, Europe, and, later, Canada and the United States, profoundly weakening the country. Furthermore, the agricultural population continued to migrate to urban areas within Haiti.84 Popular unrest at last led to the ouster of Jean-Claude Duvalier, and a new constitution was adopted. In 1990, ­Jean-Bertrand Aristide won election on a platform of democracy that appealed particularly to the poor, but he was subject to a military coup within a year. The 1993 US embargo was the final blow to the country’s economy. In 1996 René Préval was elected president but could not gain support of the parliament. The United States supported the return of Aristide following a disputed election in 2000, but he was exiled again in 2004.81(p308–309) Elections have been held sporadically in the past decade, as elected officials have intermittently held power between displacements led by the Haitian military or outside forces. Haiti has also dealt with a series of natural disasters that have disrupted an already fragile economy with limited industry. The natural disasters have, in turn, caused health crises that prompt an influx of nongovernmental organizations (NGOs), and most often the NGOs depart without leaving a sustainable infrastructure to continue services when the immediate crises somewhat subside.85,86 Most recently, an election in late 2016 has resulted in President Jovenel Moïse taking office in early 2017. For GHESKIO to not only survive but succeed through such circumstances, adherence to the mission and effective strategies noted previously were paramount. As noted by GHESKIO founder, Dr Pape, the centers have persevered in part by operating collaboratively but independently of the Haitian national MOPHP and government.16 The MOPHP had 24 ministers of health between 1986 and 2006, and there were 22 governments of Haiti from 1986 through 2010, which Pape noted in a presentation to the NIH.15,16 The overwhelmed public health care system often operates without sufficient health care professionals, support for those professionals, or supplies.87 GHESKIO maintains 2 operations, in downtown Port-au-Prince and north of the city. The populations served are the most disenfranchised in Haiti, both before the earthquake (from desperately poor neighboring slums) and following the earthquake. After the earthquake, GHESKIO met basic survival needs of thousands of displaced families, at no cost to the patients. GHESKIO notably provided trauma and infectious disease care after the earthquake while maintaining patient participation in long-term ongoing research studies. GHESKIO was able to provide these services after losing 65% of its facilities and many personnel.9 The consistency and reliability of GHESKIO health care professionals and services have gained the trust of the community, and despite operating in a very dangerous part of town, no armed security is required to protect the facilities or health care professionals.88–90

PGCH_ch18_321-338.indd 330

8/20/18 8:16 AM

331 Chapter 18: The GHESKIO Centers for Research in Haiti: An Education and Research Model in Action

Elements of Best Practices GHESKIO has provided consistent care and research of the highest quality by adhering to these recommended best practices. ▶▶ Use multiple axes to address public health problems by attacking them from multiple angles, recognizing complexity of public health issues (operating principle: positive strategies). ▶▶ Collaborate locally and internationally to have resources to succeed and have broader effect than alone: Ministère de la Santé Publique et de la Population and Cornell initially, and then Vanderbilt, Mérieux Foundation, and others (operating principle: partnership). ▶▶ Develop models based on research conducted locally, to be replicated nationally, and publish research internationally (operating principle: population specific). ▶▶ Build capacity and transfer knowledge and technology to lead the agenda of future efforts and encourage dialogue with partners (operating principle: ­polarization). ▶▶ Innovate (operating principle: positive strategies). • Created master of public health course of study • Developed nurse practitioner program, shifted tasks, and trained polyvalent community health agents to address human resource shortage ▶▶ Embrace and be responsive to new challenges (operating principle: persistence). • Earthquake disaster response: global health vision including primary school, vocational training, multidrug-resistant TB hospital, community outreach projects for cholera, TB screening, high-risk pregnancy monitoring, screening for malnutrition in children • Cholera outbreak response: cholera treatment center opened, first oral cholera vaccine campaign, daring to change the dogma and advocate for change in international policies; move the national agenda to include national vaccination in the eradication strategy

Next Steps The future of GHESKIO lies in the continued pursuit of the 3-fold mission of service, research, and training. Recent efforts indicate that the next areas of focus include expansion of the community health division, which began in 2010 in the City of God neighborhood; primary/preventive care (including HIV and TB); maternal-child health care, including a family nutrition unit; and a focus on chronic diseases such as AIDS now only accounts for 5.7% of mortality, whereas cardiovascular diseases represent 27%. GHESKIO obtained its first NIH grant on chronic diseases looking at hypertension.9,91,92 Adolescent care is also an emerging priority.93,94 The new GHESKIO frontier is focused on adolescents and young adults; an adolescent CAB has been established

PGCH_ch18_321-338.indd 331

8/20/18 8:16 AM

332 Part 4: Models for Global Health Research

to facilitate interventions aimed at reducing vulnerability and stigma in this population.9 Continued growth of the invaluable education branch of the GHESKIO mission is a key to retaining health care professionals who are invested in their communities and committed to providing care in Haiti.95 Brain drain continues to be a significant challenge as people well trained at GHESKIO become more eligible for emigration. Haiti is one of the most brain-drained countries in the world, with 84% of all university graduates living abroad.96 One of the goals of expanding education and training is to demonstrate that health care professionals can have a future in Haiti and the workforce could then be sustained. GHESKIO provides regional training networks for professionals including physicians, nurses, laboratory technicians, social workers, and community agents. Specialized training programs include advanced nursing degrees and master of public health degrees in collaboration with international institutions.9 GHESKIO also is embracing involvement in education beyond health care professionals, from the primary level to specialized trades. The Prince Albert primary school has been built on the GHESKIO grounds by the principality of Monaco to enable children to gain a strong foundation on which future careers in any professional area could be pursued. In addition to a primary school, GHESKIO has provided support for vocational education and microcredit programs to encourage entrepreneurship.97 Research priorities continue to focus on operational (often called translational) research in which local advances in HIV and TB treatment and primary care are disseminated and used as models to inform clinical practice changes at national and international levels.98,99

Conclusion The successes and difficulties throughout the breadth of the GHESKIO Centers work in pursuit of the 3-fold mission of training, research, and service have revealed what does and does not work for a variety of models. The essence of GHESKIO success in pursuing its mission is also seen in Dr Pape’s statement, “You have to be an optimist here, despite all the odds….”16 Fair collaboration that is mutually beneficial and driven by strategic partnerships has been a key driver of GHESKIO success. Prior to such collaboration, a needs assessment must be conducted to identify areas where both parties can contribute. It is unusual to find long-term success in projects led by unilateral mechanisms that are not sensitive to local needs. For example, the PEPFAR HIV/AIDS program indicators don’t always take into account local reality and, therefore, the projects in Haiti seem destined to fall short of these generalized indicators. Another element of success in GHESKIO models is building capacity in technical and administrative arenas to support and sustain results from research efforts. GHESKIO has found increased effectiveness by fostering locally driven solutions to problems as well as advocating for research that addresses immediate public health needs.

PGCH_ch18_321-338.indd 332

8/20/18 8:16 AM

333 Chapter 18: The GHESKIO Centers for Research in Haiti: An Education and Research Model in Action

It follows that it is eminently more desirable to have native Haitians involved in health research. Too often, international NGOs have led research projects without mentorship of local staff or creation of a sustainable mechanism to continue research or patient care. In addition, research funding has been designated for international organizations who bypass local partners. The cholera crisis following the earthquake is an example of such misdirected funding. To address such funding challenges, GHESKIO must diversify funding sources and readjust according to new priorities and funding mechanisms. The GHESKIO model has been driven by the best principles of science and humanistic values.

Editor’s Comment The consistent publication in peer-reviewed journals by the clinicians, educators, and researchers at GHESKIO is a tribute to the academic rigor of its model of care. Notable is the extraordinary leadership that has been unwavering in its support of Haiti and its people. Danielle Laraque-Arena, MD, FAAP

References 1. Henley J. Haiti: a long descent to hell. The Guardian. https://www.theguardian.com/world/2010/ jan/14/haiti-history-earthquake-disaster. Published January 14, 2010. Accessed July 3, 2018 2. World Bank. The World Bank in Haiti. Overview. http://www.worldbank.org/en/country/haiti/ overview. Accessed June 26, 2018 3. US Central Intelligence Agency. Haiti. The World Factbook. https://www.cia.gov/library/ publications/the-world-factbook/geos/ha.html. Updated June 20, 2018. Accessed June 26, 2018 4. Pape JW, Liautaud B, Thomas F, et al. Characteristics of the acquired immunodeficiency syndrome (AIDS) in Haiti. N Engl J Med. 1983;309(16):945–950 5. Centers for Disease Control and Prevention. Opportunistic infections and Kaposi's sarcoma among Haitians in the United States. MMWR Morb Mortal Wkly Rep. 1982;31(26):353–354, 360–361 6. Centers for Disease Control and Prevention. Update on acquired immune deficiency syndrome (AIDS)—United States. MMWR Morb Mortal Wkly Rep. 1982;31(37):507–508, 513–514 7. Epidemiologic aspects of the current outbreak of Kaposi's sarcoma and opportunistic infections. N Engl J Med. 1982;306(4):248–252 8. Centers for Disease Control and Prevention. Recommendations and Guidelines Concerning AIDS: 1982-1987. Washington, DC: Department of Health and Human Services, Public Health Service, Centers for Disease Control and Prevention; 1988 9. Pape JW, Severe PD, Fitzgerald DW, et al. The Haiti research-based model of international public health collaboration: the GHESKIO Centers. J Acquir Immune Defic Syndr. 2014;65(Suppl 1):S5–S9 10. Pape JW, Liautaud B, Thomas F, et al. The acquired immunodeficiency syndrome in Haiti. Ann Intern Med. 1985;103(5):674–678 11. Pape JW, Liautaud B, Thomas F, et al. Risk factors associated with AIDS in Haiti. Am J Med Sci. 1986;291(1):4–7 12. Pape JW, Stanback ME, Pamphile M, et al. Prevalence of HIV infection and high-risk activities in Haiti. J Acquir Immune Defic Syndr. 1990;3(10):995–1001 13. GHESKIO Centers. Mission. http://gheskio.org/wp/?page_id=14. Accessed June 26, 2018 14. GHESKIO Centers. Research. http://gheskio.org/wp/?page_id=15. Accessed June 26, 2018 15. Pape J. Report from Haiti: rebuilding research and training programs in the aftermath of disaster. National Institutes of Health Fogarty International Center Web site. https://www.fic.nih.gov/News/ Events/Pages/haiti-rebuild-bill-pape.aspx. Presented June 17, 2010. Accessed July 3, 2018 16. Cohen J. HIV/AIDS: Latin America & Caribbean. Haiti: making headway under hellacious circumstances. Science. 2006;313(5786):470–473

PGCH_ch18_321-338.indd 333

8/20/18 8:16 AM

334 Part 4: Models for Global Health Research

17. Fitzgerald DW, Marotte C, Verdier RI, Johnson WD Jr, Pape JW. Comprehension during informed consent in a less-developed country. Lancet. 2002;360(9342):1301–1302 18. Joseph P, Schackman BR, Horwitz R, et al. The use of an educational video during informed consent in an HIV clinical trial in Haiti. J Acquir Immune Defic Syndr. 2006;42(5):588–591 19. Fitzgerald DW, Maxi A, Marcelin A, Johnson WD, Pape JW. Notification of positive HIV test results in Haiti: can we better intervene at this critical crossroads in the life of HIV-infected patients in a resource-poor country? AIDS Patient Care STDS. 2004;18(11):658–664 20. Horwitz RH, Roberts LW, Seal DW, et al. Assessing whether consent for a clinical trial is voluntary. Ann Intern Med. 2013;158(3):222–224 21. Fitzgerald DW, Pape JW, Wasserheit JN, Counts GW, Counts GW, Corey L. Provision of treatment in HIV-1 vaccine trials in developing countries. Lancet. 2003;362(9388):993–994 22. Pape JW. Institutional review boards: consideration in developing countries. Emerg Infect Dis. 2001;7(3 Suppl):547 23. Fitzgerald DW, Wasunna A, Pape JW. Ten questions institutional review boards should ask when reviewing international clinical research protocols. IRB. 2003;25(2):14–18 24. Fitzgerald DW, Pape JW, Wasunna A. Building research ethics capacity in Haiti: leading the way in the Caribbean. Dev World Bioeth. 2003;3(1):4–7 25. GHESKIO Centers. National and local collaborations. http://gheskio.org/wp/?page_id=13. Accessed June 26, 2018 26. Water with sugar and salt. Lancet. 1978;2(8084):300–301 27. Yee A. The Power, and Process, of a Simple Solution. Opinionator: Exclusive Online Commentary from The Times. August 14, 2014. https://opinionator.blogs.nytimes.com/2014/08/14/the-powerand-process-of-a-simple-solution/. Accessed June 26, 2018 28. Bhattacharyya AK, Hati AK. WHO formula of ORS and home made ORS. J Indian Med Assoc. 1994;92(2):69–70 29. Pape JW, Balasubramanyan R, Rohde JE. Intestinal illness. In: Sandler RH, Jones TC, eds. Medical Care of Refugees. New York, NY: Oxford University Press; 1987:364–376 30. Pape JW, Mondestin B, Jasmin L, Kean BH, Rohde JE, Johnson WD Jr. Management of diarrhea in Haiti: mortality reduction in 8,443 hospitalized children. Paper presented at: WHO International Conference on Oral Rehydration Therapy; 1983; Washington, DC 31. United Nations Children's Fund. Statistical Tables. Table 1. Basic Indicators. https://data.unicef.org/ wp-content/uploads/2018/03/SOWC-2017-statistical-tables.pdf. Accessed June 26, 2018 32. Chen B, Halliday TJ, Fan VY. The impact of internal displacement on child mortality in postearthquake Haiti: a difference-in-differences analysis. Int J Equity Health. 2016;15(1):114 33. Deschamps MM, Pape JW, Hafner A, Johnson WD Jr. Heterosexual transmission of HIV in Haiti. Ann Intern Med. 1996;125(4):324–330 34. Mellon RL, Liautaud B, Pape JW, Johnson WD Jr. Association of HIV and STDs in Haiti: implications for blood banks and HIV vaccine trials. J Acquir Immune Defic Syndr Hum Retrovirol. 1995;8(2):214 35. Marc L, Honoré JG, Néjuste P, et al. Uptake to HIV post-exposure prophylaxis in Haiti: opportunities to align sexual violence, HIV PEP and mental health. Am J Reprod Immunol. 2013;69(Suppl 1):132–141 36. Centers for Disease Control and Prevention. Update: acquired immunodeficiency syndrome— United States. MMWR Morb Mortal Wkly Rep. 1985;34(18):245–248 37. Dillingham RA, Pinkerton R, Leger P, et al. High early mortality in patients with chronic acquired immunodeficiency syndrome diarrhea initiating antiretroviral therapy in Haiti: a case-control study. Am J Trop Med Hyg. 2009;80(6):1060–1064 38. Verdier RI, Fitzgerald DW, Johnson WD Jr, Pape JW. Trimethoprim-sulfamethoxazole compared with ciprofloxacin for treatment and prophylaxis of Isospora belli and Cyclospora cayetanensis infection in HIV-infected patients. A randomized, controlled trial. Ann Intern Med. 2000;132(11):885–888 39. Pape JW, Verdier RI, Johnson WD Jr. Treatment and prophylaxis of Isospora belli infection in patients with the acquired immunodeficiency syndrome. N Engl J Med. 1989;320(16):1044–1047

PGCH_ch18_321-338.indd 334

8/20/18 8:16 AM

335 Chapter 18: The GHESKIO Centers for Research in Haiti: An Education and Research Model in Action

40. DeHovitz JA, Pape JW, Boncy M, Johnson WD Jr. Clinical manifestations and therapy of Isospora belli infection in patients with the acquired immunodeficiency syndrome. N Engl J Med. 1986;315(2):87–90 41. Pierre S, Jannat-Khah D, Fitzgerald DW, Pape J, McNairy ML. 10-year survival of patients with AIDS receiving antiretroviral therapy in Haiti. N Engl J Med. 2016;374(4):397–398 42. Severe P, Leger P, Charles M, et al. Antiretroviral therapy in a thousand patients with AIDS in Haiti. N Engl J Med. 2005;353(22):2325–2334 43. Leger P, Charles M, Severe P, Riviere C, Pape JW, Fitzgerald DW. 5-year survival of patients with AIDS receiving antiretroviral therapy in Haiti. N Engl J Med. 2009;361(8):828–829 44. George E, Noël F, Bois G, et al. Antiretroviral therapy for HIV-1-infected children in Haiti. J Infect Dis. 2007;195(10):1411–1418 45. Severe P, Juste MA, Ambroise A, et al. Early versus standard antiretroviral therapy for HIV-infected adults in Haiti. N Engl J Med. 2010;363(3):257–265 46. World Health Organization. Rapid Advice: Antiretroviral Therapy for HIV Infection in Adults and Adolescents. Geneva, Switzerland: World Health Organization; 2009. http://apps.who.int/iris/ bitstream/10665/107280/1/9789241598958_eng.pdf. Accessed June 26, 2018 47. Peck R, Fitzgerald DW, Liautaud B, et al. The feasibility, demand, and effect of integrating primary care services with HIV voluntary counseling and testing: evaluation of a 15-year experience in Haiti, 1985-2000. J Acquir Immune Defic Syndr. 2003;33(4):470–475 48. Koenig SP, Dorvil N, Dévieux JG, et al. Same-day HIV testing with initiation of antiretroviral therapy versus standard care for persons living with HIV: a randomized unblinded trial. PLoS Med. 2017;14(7):e1002357 49. Burgess AL, Fitzgerald DW, Severe P, et al. Integration of tuberculosis screening at an HIV voluntary counselling and testing centre in Haiti. AIDS. 2001;15(14):1875–1879 50. Ferdinand S, Sola C, Verdol B, et al. Molecular characterization and drug resistance patterns of strains of Mycobacterium tuberculosis isolated from patients in an AIDS counseling center in Portau-Prince, Haiti: a 1-year study. J Clin Microbiol. 2003;41(2):694–702 51. Charles M, Vilbrun SC, Koenig SP, et al. Treatment outcomes for patients with multidrug-resistant tuberculosis in post-earthquake Port-au-Prince, Haiti. Am J Trop Med Hyg. 2014;91(4):715–721 52. Ocheretina O, Morose W, Gauthier M, et al. Multidrug-resistant tuberculosis in Port-au-Prince, Haiti. Rev Panam Salud Pública. 2012;31(3):221–224 53. Joseph P, Severe P, Ferdinand S, et al. Multidrug-resistant tuberculosis at an HIV testing center in Haiti. AIDS. 2006;20(3):415–418 54. Fitzgerald DW, Morse MM, Pape JW, Johnson WD Jr. Active tuberculosis in individuals infected with human immunodeficiency virus after isoniazid prophylaxis. Clin Infect Dis. 2000;31(6): 1495–1497 55. Fitzgerald DW, Desvarieux M, Severe P, Joseph P, Johnson WD Jr, Pape JW. Effect of post-treatment isoniazid on prevention of recurrent tuberculosis in HIV-1-infected individuals: a randomised trial. Lancet. 2000;356(9240):1470–1474 56. Pape JW, Jean SS, Ho JL, Hafner A, Johnson WD Jr. Effect of isoniazid prophylaxis on incidence of active tuberculosis and progression of HIV infection. Lancet. 1993;342(8866):268–272 57. Masur J, Koenig SP, Julma P, et al. Active tuberculosis case finding in Haiti. Am J Trop Med Hyg. 2017;97(2):433–435 58. Koenig SP, Rouzier V, Vilbrun SC, et al. Tuberculosis in the aftermath of the 2010 earthquake in Haiti. Bull World Health Organ. 2015;93(7):498–502 59. Fitzgerald DW, Bezak K, Ocheretina O, et al. The effect of HIV and HPV coinfection on cervical COX-2 expression and systemic prostaglandin E2 levels. Cancer Prev Res (Phila). 2012;5(1):34–40 60. Fink VI, Shepherd BE, Cesar C, et al. Cancer in HIV-infected persons from the Caribbean, Central and South America. J Acquir Immune Defic Syndr. 2011;56(5):467–473 61. GHESKIO Centers. Cervical cancer. http://gheskio.org/wp/?page_id=336. Accessed June 26, 2018 62. Deschamps MM, Dévieux JG, Théodore H, et al. A feeding education program to prevent motherto-child transmission of HIV in Haiti. AIDS Care. 2009;21(3):349–354 63. Deschamps MM, Noel F, Bonhomme J, et al. Prevention of mother-to-child transmission of HIV in Haiti. Rev Panam Salud Pública. 2009;25(1):24–30

PGCH_ch18_321-338.indd 335

8/20/18 8:16 AM

336 Part 4: Models for Global Health Research

64. Dévieux JG, Deschamps MM, Malow RM, et al. Knowledge, attitudes, and behaviors among a sample of HIV-positive and HIV-negative females visiting an urban VCT center in Haiti. J Health Care Poor Underserved. 2009;20(2):554–568 65. Noel F, Mehta S, Zhu Y, et al. Improving outcomes in infants of HIV-infected women in a developing country setting. PLoS One. 2008;3(11):e3723 66. Dionne-Odom J, Massaro C, Jogerst KM, et al. Retention in care among HIV-infected pregnant women in Haiti with PMTCT option B. AIDS Res Treat. 2016;2016:6284290 67. Heidkamp RA, Stoltzfus RJ, Fitzgerald DW, Pape JW. Growth in late infancy among HIV-exposed children in urban Haiti is associated with participation in a clinic-based infant feeding support intervention. J Nutr. 2012;142(4):774–780 68. Schackman BR, Neukermans CP, Fontain SN, et al. Cost-effectiveness of rapid syphilis screening in prenatal HIV testing programs in Haiti. PLoS Med. 2007;4(5):e183 69. Koenig SP, Riviere C, Leger P, et al. The cost of antiretroviral therapy in Haiti. Cost Eff Resour Alloc. 2008;6:3 70. Koenig SP, Schackman BR, Riviere C, et al. Clinical impact and cost of monitoring for asymptomatic laboratory abnormalities among patients receiving antiretroviral therapy in a resource-poor setting. Clin Infect Dis. 2010;51(5):600–608 71. Koenig SP, Bang H, Severe P, et al. Cost-effectiveness of early versus standard antiretroviral therapy in HIV-infected adults in Haiti. PLoS Med. 2011;8(9):e1001095 72. Fitzgerald DW, Behets F, Preval J, Schulwolf L, Bommi V, Chaillet P. Decreased congenital syphilis incidence in Haiti’s rural Artibonite region following decentralized prenatal screening. Am J Public Health. 2003;93(3):444–446 73. Piarroux R, Barrais R, Faucher B, et al. Understanding the cholera epidemic. Haiti. Emerg Infect Dis. 2011;17(7):1161–1168 74. Sévère K, Anglade SB, Bertil C, et al. Clinical features of human immunodeficiency virus-infected patients presenting with cholera in Port-au-Prince, Haiti. Am J Trop Med Hyg. 2016;95(5): 999–1003 75. Sévère K, Rouzier V, Anglade SB, et al. Effectiveness of oral cholera vaccine in Haiti: 37-month follow-up. Am J Trop Med Hyg. 2016;94(5):1136–1142 76. Sévère K, Rouzier V, Anglade SB, et al. In response. Am J Trop Med Hyg. 2016;95(2):495–496 77. Pape JW, Rouzier V. Embracing oral cholera vaccine—shifting response to cholera. N Engl J Med. 2014;370(22):2067–2069 78. Rouzier V, Severe K, Juste MA, et al. Cholera vaccination in urban Haiti. Am J Trop Med Hyg. 2013;89(4):671–681 79. Charles M, Delva GG, Boutin J, et al. Importance of cholera and other etiologies of acute diarrhea in post-earthquake Port-au-Prince, Haiti. Am J Trop Med Hyg. 2014;90(3):511–517 80. Ivers LC, Farmer PE, Pape WJ. Oral cholera vaccine and integrated cholera control in Haiti. Lancet. 2012;379(9831):2026–2028 81. Gibson C. Empire’s Crossroads: A History of the Caribbean From Columbus to the Present Day. New York, NY: Grove Press; 2015 82. Macdonald I. France’s debt of dishonour to Haiti. The Guardian. https://www.theguardian.com/ commentisfree/cifamerica/2010/aug/16/haiti-france. Published August 16, 2010. Accessed July 30, 2018 83. Laraque F. The relentless struggle of the Haitian masses for liberty and survival. In: L'instrumentalisation de la pensée révolutionnaire/The Instrumentalization of Revolutionary Thought: A Collection of Essays and Reflections. Cambridge, MA: Trilingual Press; 2014:473–488 84. Laraque F. A natural earthquake follows the human economic seism which has been shaking Haiti particularly since the Duvaliers. In: L'instrumentalisation de la pensée révolutionnaire/The Instrumentalization of Revolutionary Thought: A Collection of Essays and Reflections. Cambridge, MA: Trilingual Press; 2014:505–509 85. Ramachandran V, Walz J. Haiti: where has all the money gone? J Haitian Studies. 2015;21(1):26–65 86. Schuller M. Killing with Kindness: Haiti, International Aid, and NGOs. New Brunswick, NJ: Rutgers University Press; 2012

PGCH_ch18_321-338.indd 336

8/20/18 8:16 AM

337 Chapter 18: The GHESKIO Centers for Research in Haiti: An Education and Research Model in Action

87. Simmons AM. An American physician laments Haiti's sick healthcare system, as a grinding doctors’ strike drags on. Los Angeles Times. http://www.latimes.com/world/global-development/ la-fg-global-haiti-hospital-crisis-snap-story.html. Published July 31, 2016. Accessed June 26, 2018 88. Pape JW, Johnson WD Jr, Fitzgerald DW. The earthquake in Haiti—dispatch from Port-au-Prince. N Engl J Med. 2010;362(7):575–577 89. Pape JW, Deschamps MM, Ford H, Joseph P, Johnson WD Jr, Fitzgerald DW. The GHESKIO refugee camp after the earthquake in Haiti—dispatch 2 from Port-au-Prince. N Engl J Med. 2010;362(9):e27 90. Pape JW, Rouzier V, Ford H, Joseph P, Johnson WD Jr, Fitzgerald DW. The GHESKIO field hospital and clinics after the earthquake in Haiti—dispatch 3 from Port-au-Prince. N Engl J Med. 2010;362(10):e34 91. Loewenberg S. Jean William Pape: GHESKIO founder and Gates Award winner. Lancet. 2010;376(9738):323 92. GHESKIO Centers. History. http://gheskio.org/wp/?page_id=303. Accessed June 26, 2018 93. Reif LK, Rivera V, Louis B, et al. Community-based HIV and health testing for high-risk adolescents and youth. AIDS Patient Care STDS. 2016;30(8):371–378 94. Reif LK, Bertrand R, Benedict C, et al. Impact of a youth-friendly HIV clinic: 10 years of adolescent outcomes in Port-au-Prince, Haiti. J Int AIDS Soc. 2016;19(1):20859 95. GHESKIO Centers. Training. http://gheskio.org/wp/?page_id=18. Accessed June 26, 2018 96. Vatav M. Turning the brain drain into the brain gain. Haiti Business Week. https://www. haitibusinessweek.com/articles/19/turning-the-brain-drain-into-the-brain-gain. Published August 20, 2012. Accessed July 30, 2018 97. GHESKIO Centers. Community health and humanitarian support. http://gheskio.org/wp/?page_ id=254. Accessed June 26, 2018 98. GHESKIO Centers. Major research projects. http://gheskio.org/wp/?page_id=149. Accessed June 26, 2018 99. Adams LV, Palumbo P. The time to treat the children is now. J Infect Dis. 2007;195(10):1396–1398

PGCH_ch18_321-338.indd 337

8/20/18 8:16 AM

PGCH_ch18_321-338.indd 338

8/20/18 8:16 AM

339

CHAPTER 19

Injury Prevention Research and Global Child Health Nichole L. Hodges, PhD Gary A. Smith, MD, DrPH, FAAP

abstract Injuries are a leading cause of death and disability among children throughout the world. It is estimated that 735,500 children and teens younger than 20 years die from unintentional injuries annually. Although injuries are one of the most common causes of pediatric mortality globally, they do not affect all regions of the world equally. Low- and middle-income countries not only experience pediatric injuries at a much higher rate than high-income countries, but they also have greater total injury-related mortality and morbidity. An estimated 97% of all p ­ ediatric unintentional injury-related deaths occur in lowand middle-income countries. This chapter will describe the global public health burden and leading causes of unintentional injuries to children. We will also discuss the application of the public health approach and the principles of injury prevention to child injury. Best practices and case studies will be presented to highlight innovative research studies and evidence-based injury prevention strategies that have been implemented in low-, middle-, and high-income countries. The chapter closes with an overview of current research gaps and suggestions for advancing the field. This chapter will not discuss intentional injury specifically, which, in the editors’ assessment, deserves a detailed and comprehensive thesis— not achievable in a single chapter.

PGCH_ch19_339-358.indd 339

8/20/18 8:24 AM

340 Part 4: Models for Global Health Research

OPERATING PRINCIPLES INCLUDED (SEE PART 1.) 1. Population/epidemiology (population-specific and local data) 2. Positive strategies (rigorous, evidence based, ethically sound, teachable, replicable, sustainable) Competencies Addressed: R1, R2, R4 See Chapter 8, Global Health Research Competencies.

Key Reference GBD 2015 Mortality and Causes of Death Collaborators. Global, regional, and national life expectancy, all-cause mortality, and cause-specific mortality for 249 causes of death, 1980–2015: a systematic analysis for the Global Burden of Disease Study 2015. Lancet. 2016;388(10053):1459–1544

Teaching Points 1 Unintentional injuries have a variety of causes, including transportation ­injuries, drowning, adverse effects of medication, falls, and burns.

2 Although globally unintentional injuries are estimated to account for approximately 18% of fatalities among children younger than 20 years, a significant disparity exists between the high- and low- and middle-income countries. For example, in Western sub-Saharan Africa, children and adolescents have an unintentional injury–related mortality rate greater than 10 times that of children in Western Europe.

3 Injury research demonstrates that injuries are predictable events (and therefore are not accidents). Most of the estimated 10 million pediatric road ­traffic–related injuries occurring globally each year could be eliminated or controlled with effective prevention and response strategies.

4 Injury prevention efforts are most effective when they address injury risk on multiple levels. This includes primary prevention (preventing new injuries), secondary prevention (reducing the severity of an injury during or after the event), and tertiary prevention (limiting the long-term effects of the injury).

5 Passive prevention, which is automatic and universal (eg, fencing around pools) is always preferred over active prevention, which requires action (eg, wearing a life jacket/personal floatation device).

6 The public health framework for injury prevention includes 4 components:

1) conducting injury surveillance; 2) identifying risk and protective factors based on collected data; 3) developing, implementing, and evaluating interventions; and 4) promoting the adoption of the evidence-based intervention strategy.

7 The universal adoption of internationally agreed-on standards for consumer products would set clear benchmarks for manufacturers and help protect consumers by keeping dangerous products out of the marketplace.

PGCH_ch19_339-358.indd 340

8/20/18 8:24 AM

341 Chapter 19: Injury Prevention Research and Global Child Health

Background Injury is defined as the physical damage that results from the transfer of energy to the tissues of the body in amounts or at rates exceeding the body’s tolerance thresholds. The energy may be mechanical, thermal, electrical, chemical, or radiation. Injuries can also result from the absence of heat, oxygen, or other biological essentials.1 Injuries may be inflicted intentionally, as in cases of child maltreatment, assault/homicide, or suicide attempt/completed suicide, or unintentionally. This chapter will focus on unintentional injuries, such as road traffic–related injuries, falls, and drowning. Injuries are a leading cause of death and disability to adults and children worldwide. The categories of injuries as detailed by the Global Burden of Disease (GBD) Study 20152 are ▶▶ Transport injuries: road injuries (pedestrian, pedal cyclist, motorcyclist/scooter, motor vehicle occupant, other), other transport ▶▶ Unintentional injuries: falls, drowning, fire, heat and hot substances, poisonings ▶▶ Exposure to mechanical forces: unintentional firearm injuries, unintentional suffocation, other ▶▶ Adverse effects of medical treatment ▶▶ Animal contact: venomous and nonvenomous animal contact Overall, in 2015, injuries accounted for 4.725 million (4.3985–4.9052 million) deaths, with an age-standardized mortality rate of 66.2 (61.5–68.7) per 100,000. In 2015, transport injuries caused 1.5 million deaths (95% uncertainty interval, 1.4 million–1.5 million); unintentional injuries, categorized as previously noted, accounted for 1.8 million deaths (1.6 million–1.9 million); and intentional injuries, including self-harm and interpersonal violence, accounted for 1.2 million injuries (1.1 million–1.3 million).2 From 2005 to 2015, age-standardized injury-­ related death rates fell by 15.8% (12.4%-18.7%).2 Although injuries affect individuals of all ages, children and adolescents are at particular risk for injury because of their size, immaturity, lack of experience, and innate curiosity. Globally, there are an estimated 735,500 unintentional injury-­ related deaths annually among children and teens younger than 20 years.3 This equates to 84 child deaths each hour or 1 child every 43 seconds, on average. Most of these deaths occur in predictable patterns and are preventable. In recent decades, recognition of the importance of preventing injuries among children globally has increased. In 1989, the UN Convention on the Rights of the Child garnered international attention and support for the concept that children are a vulnerable population and should be protected from harm. Moreover, it was declared that children living in all nations have the right to “develop to their full potential, free from hunger and want, neglect and abuse.”4 The convention also specified that taking action to keep children safe from violence and injury should be a responsibility of all governments.5 The UN 2030 Agenda for Sustainable Development, adopted in 2015, also addresses child injury with the goal of reducing the number of global road traffic deaths, the

PGCH_ch19_339-358.indd 341

8/20/18 8:24 AM

342 Part 4: Models for Global Health Research

leading cause of death among youth worldwide. The Sustainable Development Goals (SDGs) address intentional injury concerns as well, including the elimination of violence against women and girls.6

Burden of Injury Unintentional injuries cause 18% of total global deaths annually among children and teens 1 to 19 years of age.3 While deaths from communicable and diarrheal diseases and perinatal causes declined between 1990 and 2010, injury-related deaths have remained stagnant, with the all-ages proportion of mortality due to injuries increasing slightly during this period (8.8% in 1990 to 9.6% in 2010).3,7 When examining the proportion of mortality due to unintentional injuries among children specifically, the numbers are more striking. Among children 1 to 4 years of age, 12.6% of all deaths are attributable to unintentional injuries. The proportion of deaths attributable to injuries increases with age throughout childhood; among adolescents 15 to 19 years of age, 28.8% of fatalities are the result of unintentional injuries.3 Pediatric injuries place a burden on high-income countries and low- and middle-income countries; however, there is significant health disparity between the 2 groups. For example, in Western sub-Saharan Africa, children and adolescents younger than 20 years have an unintentional injury–related mortality rate greater than 10 times that of children in Western Europe (67.98 per 100,000 vs 6.36 per 100,000, respectively).3 Ninety-seven percent of all pediatric unintentional injury–related deaths occur in low- and middle-income countries.8 Comparatively, injuries account for a greater proportion of mortality among children and adolescents in high-income countries, where children are less likely to die as a result of communicable and diarrheal diseases.3 However, as these other causes of death continue to be better controlled in low- and middle-income countries, we can expect the proportion of pediatric mortality attributable to injury to increase in these countries as well. One way that researchers measure the effect of child injury is by calculating years of potential life lost (YPLL), an estimate of the average years of life a person would have been expected to live if his or her life had not ended prematurely. This measure can be used for any cause of death as a way of quantifying the social and economic loss associated with premature death and is frequently used to highlight the significant burden that is caused by deaths that occur at a young age. Another, more recently developed measure of injury or disease burden is the disability-­ adjusted life year (DALY), a population health measure that expands on the concept of YPLL to also include the effect on health of years of life lived with disability. The DALY estimates are frequently used when estimating the regional or GBD. One DALY equates to one year of healthy life lost. For example, in 2012, global road traffic injuries accounted for an estimated 20,095,426 DALYs for young people 15 to 29 years of age.9 Injury-related deaths only describe a small proportion of the problem. For every child who dies as a result of an injury, many more are hospitalized or permanently disabled. Even greater numbers of injured children receive medical

PGCH_ch19_339-358.indd 342

8/20/18 8:24 AM

343 Chapter 19: Injury Prevention Research and Global Child Health

care at an emergency department, physician’s office, or clinic or miss school or work because of their injury. Still more children may never receive any treatment at all for their injury. Children are also affected by the injuries of others, particularly if a parent or caregiver dies or is disabled because of an injury.8 For the child who is injured, the effect may be short-term, resulting in only temporary pain and mobility limitations, or it may be much more severe. One study of children living in 4 low- and middle-income cities found that 49% of children younger than 12 years who received treatment at a hospital for an unintentional injury suffered some degree of short-term, long-term, or permanent disability.10 Some children with nonfatal injuries experience permanent physical and/or intellectual disabilities, disfigurement, chronic pain, depression, and limitations of their ability to perform age-appropriate tasks. These consequences also affect the child’s family and community. In every society, some children are at greater risk for injury than others. The likelihood that a child will be injured varies based on the child’s gender, age, socioeconomic status, and race and ethnicity; where the child lives; and other factors. Globally, male children are more likely to die from unintentional injuries than females for every mechanism of injury except fire/burns. Adolescent girls living in South Asia are at particular risk for fire-related death. Globally, in 2010, 62% of adolescents 15 to 19 years of age who died as a result of fire-related injuries were females living in the South Asia region.3 Child injury patterns and risk vary by age. While road traffic injuries are the leading cause of death for children and adolescents 5 to 19 years of age, drowning is the leading cause of death for children 1 to 4 years of age.3 Most drowning deaths among young children occur in low- and middle-income countries, predominantly in the South Asia region of the world. Drowning deaths among children 1 to 4 years of age in this region account for 37% of all such deaths worldwide.3 Among teens and young adults 15 to 29 years of age, 8 of the top 20 leading causes of death are injury related, with road traffic injuries being the most common cause of death for this age group.11 Injuries are more common among children living in poverty, with disparities existing both at the national level (high- vs low- and middle-income countries) as well as within countries, where children living in poverty experience injury-­ related mortality and morbidity at a disproportionate rate.8 Socioeconomic considerations that may affect a child’s injury risk include economic factors (income), social factors (education), family structure, and living accommodations (including neighborhood characteristics). These factors may influence a child’s level of supervision; access to safety equipment, including newer model cars with adequate crash avoidance and protection features; exposure to hazardous environments, such as high-traffic–volume residential areas, poor street lighting, and aging apartment buildings that may not be compliant with current safety requirements; and access to quality medical care when an injury does occur.8 Pediatric injuries and deaths are costly. In addition to the emotional burden that the disability or death places on the child and family, there are economic costs to consider. These include direct medical costs associated with the t­ reatment

PGCH_ch19_339-358.indd 343

8/20/18 8:24 AM

344 Part 4: Models for Global Health Research

and care provided to the injured child, as well as lost productivity and wages for the child’s caregivers. It is difficult to estimate the total financial burden caused by unintentional child injuries worldwide because few studies have been conducted on this topic in low- and middle-income countries. One injury area for which there are data on the economic burden is road traffic injuries. It is estimated that road traffic injuries and deaths are responsible for a loss of up to 3% of gross domestic product globally, with up to a 5% loss in low- and middle-income countries.12

Leading Causes of Unintentional Injury Globally, road traffic injuries are the most common cause of unintentional injury– related deaths among children and teens 1 to 19 years of age, accounting for one-third of all such fatalities. Other leading causes of unintentional injury– related death to children include drowning, burns, falls, and poisonings.3,8 Injury patterns vary by geographic region and nation. Road traffic injuries are the leading cause of unintentional injury–related death among children and teens 1 to 19 years of age in nearly every region of the world. A notable exception is South and Southeast Asia, where drowning is the leading cause of injury-related death among children and teens 1 through 14 years of age.3 Nearly 50% of all global pediatric drowning deaths occur in these 2 regions of the world.3 Fire-related deaths are more common in Western sub-Saharan Africa than in other regions, with 30% of all pediatric deaths from burns occurring there.3 Recent data from the Global Status Report on Road Safety 2015 indicates that road traffic injuries result in more than 1.2 million deaths annually among individuals of all ages. Ninety percent of these deaths occur in low- and middle-­ income countries.13 Globally, road traffic injuries are the leading cause of death among individuals 15 to 29 years of age.13 Among children and adolescents 1 to 19 years of age, road traffic injuries are the leading cause of unintentional injury death, accounting for approximately 210,466 deaths in 2010, or 33% of all such deaths in this age group. The road traffic injury–related fatality rate is 10.7 per 100,000 population worldwide for those younger than 20 years.8 It is estimated that 10 million children are injured or disabled in road traffic crashes annually.8 Road traffic injuries among children include injuries resulting from being a pedestrian or bicyclist, as well as injuries related to being a motor vehicle driver or passenger. Drowning is the second leading cause of unintentional injury–related death among children. In 2010, there were an estimated 135,261 drowning deaths among children globally, or approximately 22% of all unintentional injury deaths among children and adolescents 1 to 19 years of age.3 Drowning deaths disproportionately affect children younger than 5 years. The overall drowning-­ related mortality rate among children is 7.2 deaths per 100,000 population; however, rates are significantly lower in high-income than low- and middle-­ income countries, as will be discussed later in this chapter.8 Most countries do not reliably track the annual number of nonfatal drowning cases, and fatality rates are high among the submersion cases that are reported.8 For each fatal drowning,

PGCH_ch19_339-358.indd 344

8/20/18 8:24 AM

345 Chapter 19: Injury Prevention Research and Global Child Health

there are an estimated 1 to 4 nonfatal submersion events requiring hospitalization. These cases frequently result in permanent disability, particularly in high-­ income countries, where intensive care may save lives that would be lost in settings with less intensive support.14 In 2010, there were an estimated 90,209 burn-related deaths among children and adolescents 1 to 19 years of age.3 The overall global mortality rate for burns among children is 3.9 deaths per 100,000 population; however, the mortality rate is significantly higher in low- and middle- than high-income countries (4.3 vs 0.4 deaths per 100,000 population, respectively).8 Burns are also one of the leading causes of DALYs in low- and middle-income countries.7 Most fatal burns among children are fire related (93.0%), with an additional 5.4% resulting from scalds and 1.6% from contact, chemical, or electrical burns.8 Scalds and contact burns are also responsible for a large proportion of burn-related disabilities, although global morbidity data are not readily available on this topic.8 Falls were the cause of an estimated 47,270 deaths among children and teens 1 to 19 years of age in 2010.3 Fall-related mortality rates vary from 0.2 deaths per 100,000 population in some high-income countries to 2.9 deaths per 100,000 population in low- and middle-income countries.8 In many nations, falls are one of the most common reasons that a child is treated in an emergency department. However, there are some concerns among researchers about the accuracy of fall data collected globally because there may be differences in the definitions and methods used to determine if a death is fall related.8 Also, morbidity data related to falls in low- and middle-income countries are very limited and not adequate for making global estimates of the burden of nonfatal falls among children. Globally, unintentional poisonings account for an estimated 45,000 deaths each year among those younger than 20 years of age.8 The global mortality rate for poisoning among children is 1.8 deaths per 100,000 population.8 Although poisoning-related mortality rates are generally lower among high-income countries than low- and middle-income countries, the rates among teens 15 to 19 years of age living in high-income countries of the Americas are higher than those of teens in low- and middle-income countries. These deaths are frequently the result of substance abuse or unintentional drug overdoses.8 Morbidity data for poisonings are scarce in low- and middle-income countries, and although many high-­ income countries collect poisoning data, the information is frequently difficult to compare across nations due to the lack of a standardized classification system.8 The types of poisons to which children are exposed differ depending on where they live and may be influenced by their socioeconomic status and cultural or religious practices.15 Among high-income countries, children are more likely to be exposed to medications; recreational drugs; household products, including cleaning agents; and pesticides. Opioid exposures, in particular, are a serious and common source of pediatric poisoning in some high-income countries; epide­ miologic descriptions of opioid exposures in low- and middle-income countries are less common in the research literature.16–19 Notably, with only approximately 5% of the world’s population, the United States is consuming approximately 80% of the world’s opioid supply.20 And more than 25 million adults and an

PGCH_ch19_339-358.indd 345

8/20/18 8:24 AM

346 Part 4: Models for Global Health Research

e­ stimated 2.5 million children outside of the United States die without access to adequate pain relief. 21 Children living in low- and middle-income countries are more frequently exposed to hydrocarbon fuels, such as kerosene and paraffin oil, as well as medications and cleaning agents. Children who live in agricultural areas are more likely to be exposed to pesticides from the air and water. These chemicals may also be introduced into the home on the clothes or shoes of family members who work in the fields. Older children who are working in industrial jobs in low- and middle-income countries also may be exposed to toxic substances, including lead and mercury.8

Prevention of Child Injury

The Public Health Approach Injuries are not “accidents” because they do not occur at random. As injury research demonstrates, injuries are largely predictable events; therefore, most injuries can be eliminated or controlled with effective prevention and response strategies. Injuries are addressed using the same public health model that has proved successful for approaching other health concerns, such as eradicating infectious diseases. Briefly, the public health framework includes the following 4 primary components: 1. Conducting injury surveillance and collecting data to measure the magnitude of the problem 2. Identifying risk and protective factors based on the collected data 3. Developing, implementing, and evaluating interventions 4. Promoting the adoption of evidence-based prevention strategies

Principles of Injury Prevention The most effective injury prevention campaigns are designed to address injury risk on multiple levels. Again, using the public health framework, individuals working in injury prevention may choose to focus on primary, secondary, or tertiary levels of prevention. Primary prevention efforts strive to prevent new injuries from occurring. Just as vaccines provide primary prevention from infectious diseases, primary injury prevention interventions, such as installing fences around swimming pools, can prevent injuries from occurring. Other examples of primary prevention include redesigning unsafe toys and other consumer products and installing window guards to prevent falls. The goal of secondary prevention is to prevent or reduce the severity of the injury during or after an event. Examples include using child safety restraints in motor vehicles, installing smoke detectors in homes, and maintaining safety surfacing on playgrounds. The potentially injurious event may occur, such as the car crash or fall, but either the injury does not occur or harm is minimized due to the reduction in the amount of energy that is transferred to body tissues.

PGCH_ch19_339-358.indd 346

8/20/18 8:24 AM

347 Chapter 19: Injury Prevention Research and Global Child Health

Tertiary prevention limits the long-term consequences of the injury after it has occurred. Trauma rehabilitation programs that prevent or reduce the development of disability following an injury are examples of tertiary prevention. Injury prevention efforts should address all 3 levels of prevention to maximize success. It is also important to consider the effort required by the user to implement injury prevention actions. As with other public health problems, passive injury prevention strategies are preferred over active ones because they provide automatic and universal protection. Passive injury prevention strategies are those that do not require any action on the part of the individual being protected; for example, the installation of fencing around swimming pools to prevent drowning or airbags in cars. In contrast, active injury prevention strategies require that the individual or a caregiver take action to enact the protection; for example, using life jackets/personal floatation devices and bicycle helmets. In practice, many public health programs, including injury prevention initiatives, use a combination of active and passive strategies. At the turn of the last century, when dehydration due to gastroenteritis from contaminated water was a leading cause of child death in the United States, parents were not simply admonished to boil the water each time prior to use (active strategy). Instead, sewer treatment facilities and potable water systems were established to automatically protect the population (passive strategy), and dehydration-related deaths rapidly declined. Likewise, prior to the mid-1990s, falls down stairs in baby walkers resulted in more than 20,000 emergency department visits by young children annually in the United States. Baby walkers were labeled with warning stickers and parents were advised to watch their children more carefully, but because lapses in supervision are inevitable, these active injury prevention strategies did not succeed. Following the introduction of stationary activity centers, which look like baby walkers but do not have wheels, and a new voluntary safety standard that required a redesign of mobile baby walkers to prevent them from passing through doorways or made them brake to a stop at the edge of the top stair (all passive prevention strategies), there was a dramatic decline in the number of baby walker–related injuries in the United States. To develop effective injury prevention initiatives, it is worthwhile to consider the 3 Es: education, enforcement, and engineering. Combining strategies from each of these categories increases the likelihood of success when implementing injury prevention programs. ▶▶ Education is the foundation of much of public health. Educational interventions in injury prevention work to change behaviors by informing the public of potential risks as well as effective prevention strategies. An example would be a class to teach parents how to correctly install and use child safety seats in motor vehicles. ▶▶ Enforcement uses legal strategies to enact laws, ordinances, and regulations that can influence a variety of targets, including personal behaviors, the environment, and product design. These strategies are most successful at preventing injuries when they are paired with effective education and adequate enforcement. One example of enforcement in injury prevention is the enactment of

PGCH_ch19_339-358.indd 347

8/20/18 8:24 AM

348 Part 4: Models for Global Health Research

laws prohibiting a driver from operating a motor vehicle while under the influence of alcohol or drugs. ▶▶ Engineering, the third E, refers to using environmental and product design strategies to prevent or decrease the effect of injuries. Engineering approaches can be highly effective, particularly if they are passive in nature, such as traffic calming measures, child-resistant lighters, and flame-resistant sleepwear for children. The Haddon Matrix, created by William Haddon Jr and first published in 1972, uses principles of epidemiology to provide a conceptual framework for ­categorizing and guiding research and prevention efforts.22,23 The Haddon Matrix uses 4 columns to identify risk factors for the disease or injury, including the host (person at risk of the injury), the agent/vector (source of energy and means of energy transfer), the physical environment, and the socioeconomic environment.22,24 The rows of the matrix correspond to the levels of prevention described previously: primary (pre-injury event), secondary (injury event), and tertiary (post-injury event). The matrix visually represents how interventions can be implemented before, during, or after an adverse event. An example of the Haddon Matrix as it applies to children in motor vehicle crashes can be found in Table 19-1. Injury prevention efforts not only spare children and families the physical and emotional burden of coping with injury-related death and disability; they also save society the financial costs associated with these injuries. Preventing child injuries can have an economic effect on par with other public health interventions, such as immunizations. In the United States, for example, researchers have determined that the US $57 spent on a child safety seat generates US $2,400 in benefits to society. Unfortunately, accessing potentially lifesaving child safety

Table 19-1. The Haddon Matrix Applied to Children in Motor Vehicle Crashes Host

Agent/Vehicle

Physical ­Environment

Socioeconomic ­Environment

Pre-event (before the crash)

Driver skill, speed, alcohol use, ­distraction

Vehicle brakes, tires, seat belts, airbags

Visibility, road type and condition, weather

Speed limits, impaired driving laws

Event (crash)

Child restraint/seat belt use, child’s position in vehicle, age, physical health

Vehicle type and safety features

Guardrails, ­median barriers

Child restraint laws

Post-event (after the crash)

Age and physical health of child

Access to EMS

EMS system, distance to hospital, ­rehabilitation

EMS response, trauma system availability

Abbreviation: EMS, emergency medical services.

PGCH_ch19_339-358.indd 348

8/20/18 8:24 AM

349 Chapter 19: Injury Prevention Research and Global Child Health

devices is difficult to impossible in many low- and middle-income countries. By one estimate, a factory worker in a low- or middle-income country would need to work 16 times as many hours as a similar worker in a high-income country to earn enough money to purchase a child safety seat.25

Current Best Practices Fortunately, despite the burden that injuries place on individuals and societies around the world, substantial progress has been made in the field of injury prevention over the past several decades. However, there are disparities in the advancements that have been made, with some countries enjoying greater reductions in injury rates than others. More could be done to share resources and to address injury prevention in a united manner. Best practice recommendations for increasing international collaboration around the topic of child injury prevention include capacity building through knowledge and skills transfer, building and maintaining strong coalitions and networks, and fostering multinational collaboration. Following are examples of each of these recommended strategies. A first step in addressing the burden of injury and associated disparity in lowand middle-income countries is to build the injury prevention capacity of the people who live and work there. Without the proper training and skills, it is impossible to develop and implement effective injury prevention interventions. Key training topics for persons working in injury prevention might include research, data collection, policy development, communication, leadership, project management, fundraising, collaboration, and networking.26 The World Health Organization (WHO) MENTOR-VIP was developed out of recognition of this need for person-to-person professional skills transfer around topics associated with violence and injury prevention. Launched in 2007, the ongoing program was developed specifically to facilitate injury prevention capacity building among more junior practitioners in low- and middle-income countries by pairing them with a volunteer mentor with more experience in the field. The mentoring commitment lasts 12 months, with each mentoring pair determining the skills and topics on which they will focus. A similar program, the Global Injury Prevention Network, was developed by the Child Injury Prevention Alliance. The Global Injury Prevention Network focuses the mentoring at the organizational level, with more experienced violence and injury prevention organizations providing guidance to less experienced groups in low- and middle-income countries. Coalition and network building are essential tools for advancing injury prevention efforts on a global scale. One example of the power of coalition building can be seen in efforts of the UN Road Safety Collaboration (UNRSC). Coordinated by WHO and the UN Regional Commissions at the request of the UN General Assembly, the UNRSC was developed in 2004 to facilitate international cooperation and strengthen global and regional coordination around road safety efforts. Members of the UNRSC include international agencies, governments, nongovernmental organizations (NGOs), foundations, and businesses from throughout the world. Much of the work of the collaboration centers on the implementation of the recommendations outlined in the WHO World Report on

PGCH_ch19_339-358.indd 349

8/20/18 8:24 AM

350 Part 4: Models for Global Health Research

Road Traffic Injury Prevention.27 In support of this mission, the UNRSC has published a series of manuals providing advice to government agencies worldwide on performing traffic and injury data collection, establishing a road traffic lead agency, and implementing evidence-based strategies to prevent injuries related to road traffic issues such as pedestrian safety, child passenger safety, and drinking and driving. The UNRSC has been successful in gathering international support and momentum for the topic of road safety, culminating in the launch of the UN Decade of Action for Road Safety 2011–2020. Another successful international coalition focused on the topic of road traffic safety research is the Road Traffic Injuries Research Network (RTIRN). The goal of the RTIRN is to reduce the burden of road traffic injuries in low- and middle-income countries through research and research capacity building, as well as advocacy, investment, communication, and dissemination.28 Members of the RTIRN include more than 1,700 researchers, professionals, and students representing 124 countries. A third recommendation for expanding global alliances related to pediatric injury prevention is to foster multinational collaboration around specific injury topics or concerns. One injury area that would benefit greatly from this approach is increased coordination of product safety standards across countries. Consumer products are a significant source of injury among children, particularly in high-income countries. Frequently, these injuries are the result of flaws in the design or manufacture of products. The universal adoption of internationally agreed-on standards for consumer products would set clear benchmarks for manufacturers and help protect consumers by keeping dangerous products out of the marketplace.

Case Examples Many child injuries could be prevented by implementing interventions and engineering practices that have already been developed, such as using child safety seats in motor vehicles and helmets when riding bicycles and motorized cycles. Although interventions developed in high-income countries may not be directly transferrable to low- and middle-income countries and vice versa, the open exchange of knowledge and ideas can facilitate the adaptation of existing strategies for use in other regions. Two case examples of effective injury prevention interventions are efforts to increase child safety seat use in the United States and drowning prevention campaigns in Bangladesh.

Center for Injury Research and Prevention at the Children’s Hospital of Philadelphia

Child safety seats are highly effective injury prevention tools, reducing the risk of injury in a motor vehicle crash by up to 54% among children 1 to 4 years of age when compared with being unrestrained in the vehicle.29 While child safety seats are considered the norm in most high-income countries, they are rarely used in low- and middle-income countries, where they may be unavailable, unaffordable, or socially unacceptable. However, despite their availability in many high-income countries, usage rates are lower among certain populations, particularly in areas

PGCH_ch19_339-358.indd 350

8/20/18 8:24 AM

351 Chapter 19: Injury Prevention Research and Global Child Health

of poverty. Also, as an active injury prevention strategy, child safety seats require action on the part of the individual being protected or, in this case, the indi­ vidual’s parent or caregiver to ensure that the device is installed and used correctly and consistently. In addition, the population of parents of young children is always shifting, with new individuals becoming first-time parents each day. As a result, even in high-income countries, consistent effort is needed to maintain and increase child safety seat usage rates. From 1997 until 2007, the Center for Injury Research and Prevention at the Children’s Hospital of Philadelphia developed and maintained the first largescale, child-focused crash surveillance data system in the United States. Studies that analyzed data collected during the project contributed extensively to the existing scientific knowledge related to children in motor vehicle crashes, and study findings were used to inform the development of new products, test motor vehicle safety standards, influence policy, enhance public education efforts, and improve medical practice. The Children’s Hospital of Philadelphia’s work was highly influential in promoting the use of booster seats in motor vehicles for children who have outgrown their child safety seat but are not able to fit properly in a vehicle safety belt alone. From 1999 until 2007, child restraint use (including booster seats use) in the United States among children 4 to 8 years of age increased from 15% to 63%, demonstrating the powerful effect that can result from translating research into action.30

Drowning Prevention Campaigns in Bangladesh

Drowning is a leading cause of death among children in low- and middle-­income countries and a source of significant health disparity. The drowning fatality rate for children in these countries is 6 times higher than in high-income countries, with rates of 7.8 versus 1.2 per 100,000 population, respectively.8 In Bangladesh, the fatal drowning rate among children 1 to 4 years of age is 86.3 per 100,000, or approximately 46 drowning deaths every day.31 Bangladesh is a river delta nation prone to flooding, particularly during monsoon season, and most homes in Bangladesh are located near water, including rivers, canals, and ponds that are used daily for washing and bathing. Most children who drown in Bangladesh do so in ponds (43%) and at locations within 20 meters of their home (78%).31 Among children 1 to 4 years of age, half of the drownings occur during the morning hours, frequently while mothers and other caregivers are occupied with chores.31 The Alliance for Safe Children (TASC) and the Centre for Injury Prevention and Research, Bangladesh (CIPRB) are 2 organizations working to eliminate drowning deaths in Bangladesh. The mission of TASC is to reduce injury-related child deaths in Asia. In response to concerns about the quality of available data on child injuries and deaths, in 2003, TASC partnered with the government of the People’s Republic of Bangladesh, the Institute of Child and Mother Health, and the United Nations Children’s Fund (UNICEF) to conduct the Bangladesh Health and Injury Survey. The survey is the largest community survey ever conducted and included more than 171,000 households. It produced a wealth of information on the prevalence and causes of injuries in the country and provided guidance for future interventions.32

PGCH_ch19_339-358.indd 351

8/20/18 8:24 AM

352 Part 4: Models for Global Health Research

Another organization working to reduce drowning deaths among children in Bangladesh is the CIPRB. The CIPRB was created in response to the results of the Bangladesh Health and Injury Survey, which showed definitively that there was a need for child injury prevention interventions in the country. The CIPRB conducts research and develops and implements interventions related to injury prevention, nutrition, reproductive and child health, and environment and climate change. With funding from UNICEF and technical support from TASC and the Royal Life Saving Society—Australia (RLSSA), the CIPRB conducted a study called Prevention of Child Injury through Social Intervention and Education (PRECISE) in Bangladesh from 2006 through 2011.33 The PRECISE study addressed multiple injury prevention topics and included the establishment of crèches, or community child care centers, where children could be supervised while mothers attended to other responsibilities.33 The PRECISE study also implemented SwimSafe, a program developed by the CIPRB, TASC, RLSSA, and Bangladesh Swimming Federation to teach survival swimming to children. On evaluation, the PRECISE program was found to be a cost-effective way to reduce child mortality caused by drowning.34 Preventing drowning among children remains central to the mission of the CIPRB. The SwimSafe program continues through a collaboration between CIPRB, TASC, RLSSA, and UNICEF Bangladesh. In 2014, the CIPRB, in partnership with the International Center for Diarrhoeal Disease Research, Bangladesh; Bloomberg Philanthropies in Dhaka, Bangladesh; and the Johns Hopkins International Injury Research Unit, began work on a new initiative to reduce pediatric drowning in Bangladesh. Saving of Children’s Lives from Drowning (known as SoLiD) is a large-scale implementation study that will test the effectiveness of using crèches (child care centers) and playpens to facilitate supervision of young children and reduce their access to open bodies of water.35 The interventions will be paired with family education and community awareness campaigns on injury risk and prevention.35

For More Information

For more reading on effective intervention strategies, the WHO World Report on Child Injury Prevention provides an extensive review of evidence-based interventions from throughout the world for the 5 most common causes of child injuries: road traffic injuries, drowning, burns, falls, and poisonings.8 It is an excellent resource for better understanding the burden of injury among children and injury prevention best practices.

Environmental Scan

Research Gaps The most critical injury research gaps existing today are related to the lack of injury surveillance data and intervention studies in low- and middle-income countries. Given that pediatric health priorities in these countries have traditionally focused on infectious disease prevention, many of these countries are ill-equipped to address the increasing proportion of morbidity and mortality that is attributable to unintentional injuries.

PGCH_ch19_339-358.indd 352

8/20/18 8:24 AM

353 Chapter 19: Injury Prevention Research and Global Child Health

The use of mobile health, which is the use of wireless mobile devices and applications to deliver health services and interventions, is becoming increasingly popular throughout the field of public health, and injury prevention is no exception. Unfortunately, despite the resources that have been devoted to these projects, many have not been rigorously evaluated, and more research is needed to determine the efficacy of this relatively new mode of health care delivery.36 In 2014, the Fogarty International Center launched a new initiative called Mobile Health: Technology and Outcomes in Low- and Middle-Income Countries to provide financial support for research into how mobile health can be used to improve health in those countries. The grant program has funded numerous studies on a variety of public health topics, including child injury. Each study uses a partnership between the United States and low- and middle-income country institutions to aid in capacity building. These studies will greatly enhance the existing knowledge base related to the effectiveness of mobile health initiatives.37

The Way Forward It is impossible to gauge the true burden of pediatric injuries on a global scale without accurate and timely injury surveillance data. This is a problem in lowand middle-income countries, in particular, where the lack of reliable high-­ quality injury data is a barrier to gauging the true extent of the injury burden. Ineffective injury surveillance systems, incomplete data, and the lack of longitudinal studies make it difficult to assess baseline injury rates, evaluate the effectiveness of injury prevention interventions, and monitor progress toward injury prevention goals. The GBD study is the most comprehensive endeavor to date to epidemiologically measure disease and injury on a global scale. Started in 1990, the GBD study is an ongoing collaborative effort involving more than 1,600 researchers who collect and analyze prevalence and trend data on more than 300 diseases and injuries in 188 countries.38 The Institute for Health Metrics and Evaluation, the research center that coordinates the GBD study, makes study data available to the public at no cost through online country profiles and interactive data visualization tools. This allows researchers and policy makers throughout the world to identify the diseases, causes of injury, and risk factors that contribute most prominently to their country’s DALYs and YPLL. Global Burden of Disease data provide information on the leading causes of death and disability by rank and trend and can show how similar countries compare with regard to leading causes of premature death. Data from the GBD research project provide a good starting point for the collection and sharing of injury data globally; however, there are concerns about data gaps and deficiencies in the quality of data that are collected and reported in low- and middle-income countries. As mentioned previously, many of these countries lack the research capacity to conduct accurate injury surveillance research. Increasing the knowledge base and infrastructure necessary to improve their ability in these areas could be facilitated by collaboration with high-income countries and greater financial investment in injury research. The priority given to collecting injury data was heightened by the United Nations in September 2015 when it passed a resolution entitled Transforming Our

PGCH_ch19_339-358.indd 353

8/20/18 8:24 AM

354 Part 4: Models for Global Health Research

World: The 2030 Agenda for Sustainable Development.6 That resolution identified SDGs, including, for the first time, target 3.6, which calls on nations to reduce road traffic fatalities and injuries by 50% by 2020. In addition, target 11.2 calls for access to safe, affordable, accessible, and sustainable transport systems for all, improving road safety by expanding public transport, by 2030. This second target gives special attention to the needs of vulnerable populations, including children. Globally, the quantity and quality of available injury data could be enhanced by expanding or more effectively using existing data sources, such as local and national child fatality review data and household surveys, and exploring nontraditional data sources such as injury fatality data from morgues. Promising initiatives in injury risk assessment and surveillance include the International Road Assessment Programme (iRAP), the New Car Assessment Program (NCAP), and the Global Burn Registry. The iRAP is an NGO that works with government agencies and other NGOs to prevent road traffic deaths worldwide by facilitating safety improvements to the infrastructure of roads. iRAP has been used in more than 80 countries to assess high-risk roads and identify evidence-based and affordable engineering modifications to improve roadway safety for all road users. Because iRAP assessments include road inspection data, not just crash data, they are an accessible option for countries in which crash data is limited or unreliable.39 iRAP also provides training, technology, support, and road improvement evaluation services to aid in capacity building at local, regional, and national levels.39 Developed by the US Department of Transportation National Highway Traffic Safety Administration in 1979, NCAP was designed to improve motor vehicle occupant protection by providing consumers with an independent measure of vehicle safety.40 The New Car Assessment Program has since expanded to 9 international programs; establishing NCAP in all regions of the world is a recommendation of the UN Global Plan for the Decade of Action for Road Safety 2011–2020. The New Car Assessment Program organizations conduct motor vehicle crash tests of new car models and then use a 5-star safety rating system to share the crash worthiness information with the public. The rating system allows consumers to evaluate the crashworthiness of a vehicle model and compare the safety ratings of similar vehicles before making a purchase. The NCAP for Latin America and the Caribbean (Latin NCAP) was established in 2010. The goals of Latin NCAP are to provide consumers across the Latin American and Caribbean region with an independent and impartial safety assessment of new cars, encourage manufacturers to improve the safety performance of vehicles sold in the region, and encourage governments across the region to apply UN vehicle crash test regulations to passenger cars.41 Ongoing Latin NCAP testing of motor vehicles has revealed that many of the best-selling vehicle models in the region are 2 decades behind in safety advances when compared with those sold in high-income nations and fail to meet global standards for motor vehicle safety.42 Although many of the vehicles sold in Latin America are designed to look identical to models sold in Europe, Latin NCAP crash tests have revealed that they frequently exhibit serious structural deficiencies and often do not have airbags. In recent years, Latin NCAP efforts have led to

PGCH_ch19_339-358.indd 354

8/20/18 8:24 AM

355 Chapter 19: Injury Prevention Research and Global Child Health

vehicle manufacturers beginning to make improvements to the vehicles they are selling in the region. However, the lack of motor vehicle safety and occupant protection regulations in much of Latin America continues to be a challenge for safety advocates. In 2013, the WHO, Global Alliance for Clean Cookstoves, Centers for Disease Control and Prevention, and International Society for Burn Injuries launched a pilot research study to test a Global Burn Registry data system to improve global surveillance of burn-related injuries.43 Deaths resulting from fire and burns disproportionately affect low- and middle-income countries where resources for data collection and injury prevention programming are limited or nonexistent. The purpose of the Global Burn Registry research project is to develop and disseminate a brief standardized data collection instrument that can be used to gather epidemiologic data on burns globally. Accurate and comprehensive data about burn injuries will allow researchers to better determine risk factors and mechanisms for burns and identify high-risk populations. Study data will be used to inform the development, selection, and testing of interventions to prevent burns, particularly in low- and middle-income countries. Despite the fact that injuries are a leading cause of death and disability throughout the world and affect individuals of all ages, nationalities, and levels of socioeconomic status, resources for injury surveillance, research, and prevention are scarce. As a comparison, the global number of injury-related deaths is 1.7 times greater than the number of fatalities due to malaria, tuberculosis, and HIV combined, yet the funding available to combat these 3 important public health problems dwarfs that spent on injury prevention.44 Securing global resources that are commensurate with the public health burden caused by injuries would have a dramatic effect on mortality and morbidity rates, particularly among low- and middle-income countries. Injuries are preventable, and evidencebased prevention strategies exist for addressing many of the world’s injury problems. However, these strategies were often developed in high-income countries and have not been adapted for use and evaluated in low- and middle-income countries. Facilitating this knowledge transfer will require resources for injury research infrastructure and training, in addition to the funds needed for intervention development, implementation, and evaluation. One example of the significant progress that can result from investment of resources into large-scale injury prevention efforts is the Bloomberg Philanthropies Initiative for Global Road Safety. Over the past decade, Bloomberg Philanthropies has dedicated $250 million to implementing evidence-based interventions to reduce road traffic injuries and deaths in low- and middle-­ income countries. In phase one of the project (2010–2014), funds were strategically invested in key injury prevention programs in 10 countries worldwide. Collaborating with local and national governments and NGOs, the interventions focused on increasing the use of motorcycle helmets and seat belts, drinking and driving prevention, motor vehicle speed reduction measures, road infrastructure improvements, and sustainable urban transport.45 These efforts resulted in an estimated 12,670 lives saved during the 5-year study period. Furthermore, half of the countries participating in the project passed new or improved road safety

PGCH_ch19_339-358.indd 355

8/20/18 8:24 AM

356 Part 4: Models for Global Health Research

laws, covering 1.6 billion people. In the second phase of the project (2015–2019), the goal is implementation of best practice interventions in 10 cities and strengthening of legislation in 5 countries. The Initiative for Global Road Safety provides a model for developing effective global partnerships in injury prevention.

Conclusion Unintentional injuries are an important, but inadequately addressed, cause of mortality and morbidity among children, particularly in low- and middle-income countries. In addition to the physical and emotional burden that child injuries place on children and families, there are also large financial costs to society, particularly among the countries that can least afford them. To have a meaningful global effect on this growing problem and eliminate associated disparities, the allocation of resources to child injury prevention must increase to be commensurate with its public health burden.

References 1. Baker SP, O’Neill B, Ginsburg MJ, Guohua L. The Injury Fact Book. 2nd ed. New York, NY: Oxford University Press; 1992 2. GBD 2015 Mortality and Causes of Death Collaborators. Global, regional, and national life expectancy, all-cause mortality, and cause-specific mortality for 249 causes of death, 1980–2015: a systematic analysis for the Global Burden of Disease Study 2015. Lancet. 2016;388(10053): 1459–1544 3. Alonge O, Hyder AA. Reducing the global burden of childhood unintentional injuries. Arch Dis Child. 2014;99(1):62–69 4. United Nations Children’s Fund. Convention on the Rights of the Child. Protecting children’s rights. http://www.unicef.org/crc/index_protecting.html. Updated May 19, 2014. Accessed June 26, 2018 5. UN Human Rights Office of the High Commissioner. Convention on the Rights of the Child. http://www.ohchr.org/EN/ProfessionalInterest/Pages/CRC.aspx. Published September 2, 1990. Accessed June 26, 2018 6. United Nations. Transforming Our World: The 2030 Agenda for Sustainable Development. https://sustainabledevelopment.un.org/content/documents/21252030%20Agenda%20for%20 Sustainable%20Development%20web.pdf. Published 2015. Accessed June 26, 2018 7. Lozano R, Naghavi M, Foreman K, et al. Global and regional mortality from 235 causes of death for 20 age groups in 1990 and 2010: a systematic analysis for the Global Burden of Disease Study 2010. Lancet. 2012;380(9859):2095–2128 8. Peden M, Oyegbite K, Ozanne-Smith J, et al, eds. World Report on Child Injury Prevention. Geneva, Switzerland: World Health Organization; 2008. http://www.unicef.org/eapro/World_ report.pdf. Accessed June 26, 2018 9. World Health Organization. Health statistics and information systems. Disease burden estimates. Disease burden, 2000–2015. http://www.who.int/healthinfo/global_burden_disease/estimates/ en/index2.html. Accessed July 3, 2018 10. Hyder AA, Sugerman DE, Puvanachandra P, et al. Global childhood unintentional injury surveillance in four cities in developing countries: a pilot study. Bull World Health Organ. 2009;87(5):345–352 11. Krug EG. Next steps to advance injury and violence prevention. Inj Prev. 2015;21(e1):e2–e3 12. McMahon K, Dahdah S. The True Cost of Road Crashes: Valuing Life and the Cost of a Serious Injury. Hampshire, United Kingdom: International Road Assessment Programme; 2008. http://www.alternatewars.com/BBOW/ABM/Value_Injury.pdf. Accessed June 26, 2018

PGCH_ch19_339-358.indd 356

8/20/18 8:24 AM

357 Chapter 19: Injury Prevention Research and Global Child Health

13. World Health Organization. Global Status Report on Road Safety 2015. Geneva, Switzerland: World Health Organization; 2015. http://www.who.int/violence_injury_prevention/road_safety_ status/2015/en. Accessed June 26, 2018 14. Meyer RJ, Theodorou AA, Berg RA. Childhood drowning. Pediatr Rev. 2006;27(5):163–168 15. Hoffman RJ, Morgenstern S, Hoffman RS, Nelson LS. Extremely elevated relative risk of paraffin lamp oil exposures in Orthodox Jewish children. Pediatrics. 2004;113(4):e377–e379 16. Allen JD, Casavant MJ, Spiller HA, et al. Prescription opioid exposures among children and adolescents in the United States: 2000-2015. Pediatrics. 2017;139(4):pii:e20163382 17. Pilgrim JL, Jenkins EL, Baber Y, Caldicott D, Drummer OH. Fatal acute poisonings in Australian children (2003-13). Addiction. 2017;112(4):627–639 18. Anderson M, Hawkins L, Eddleston M, et al. Severe and fatal pharmaceutical poisoning in young children in the UK. Arch Dis Child. 2016;101(7):653–656 19. Manouchehrifar M, Derakhshandeh N, Shojaee M, Sabzghabaei A, Farnaghi F. An epidemiological study of pediatric poisoning: a six-month cross-sectional study. Emerg (Tehran). 2016;4(1):21–24 20. Allgov.com. U.S.:5% of world population; 80% of opioid consumption. http://www.allgov.com/ news/controversies/us-5-percent-of-world-population-80-percent-of-opioid-consumption141215?news=855100. Accessed July 16, 2018 21. Knaul FM, Farmer PE, Krakaeur EL, et al. Alleviating the access abyss in palliative care and pain relief – an imperative of universal health coverage: the Lancet Commission report. Lancet. 2018;391(10128):1391–1454 22. Haddon W Jr. A logical framework for categorizing highway safety phenomena and activity. J Trauma. 1972;12(3):193–207 23. Laraque D, Barlow B. Prevention of pediatric injury. In: Ivatury RR, Cayten CG, eds. The Textbook of Penetrating Trauma. Baltimore, MD: Williams & Wilkins; 1996:89–101 24. Sattin RW, Corso PS. The epidemiology and costs of unintentional and violent injuries. In: Doll LS, Bonzo SE, Mercy JA, Sleet DA, eds. Handbook of Injury and Violence Prevention. New York, NY: Springer; 2007:3–19 25. Hendrie D, Miller TR, Orlando M, et al. Child and family safety device affordability by country income level: an 18 country comparison. Inj Prev. 2004;10(6):338–343 26. Meddings D. MENTOR-VIP—a global mentoring program for violence an injury prevention. Inj Prev. 2007;13(1):69 27. Peden M, Scurfield R, Sleet D, et al, eds. World Report on Road Traffic Injury Prevention. Geneva, Switzerland: World Health Organization, 2004. http://www.who.int/violence_injury_prevention/ publications/road_traffic/world_report/en/. Accessed March 29, 2018 28. Road Traffic Injuries Research Network. https://rtirn.net. Accessed March 28, 2018 29. National Highway Traffic Safety Administration. Revised estimates of child restraint effectiveness. Research note. https://crashstats.nhtsa.dot.gov/Api/Public/ViewPublication/96855. Published December 1996. Accessed July 3, 2018 30. Children’s Hospital of Philadelphia Center for Injury Research and Prevention. Partners for child passenger safety—describing child restraint use, informing crash injury prevention. https://injury. research.chop.edu/child-occupant-protection/partners-child-passenger-safety-pcps. Accessed July 16, 2018 31. Rahman A, Mashreky SR, Chowdhury SM, et al. Analysis of the childhood fatal drowning situation in Bangladesh: exploring prevention measures for low-income countries. Inj Prev. 2009;15(2):75–79 32. Rahman A, Rahman AF, Shafinaz S, Linnan M. Bangladesh Health and Injury Survey: Report on Children. Dhaka, Bangladesh: Institute of Child & Mother Health, United Nations Children’s Fund, Alliance for Safe Children; 2005. https://www.unicef.org/bangladesh/Bangladesh_Health_and_ Injury_Survey-Report_on_Children.pdf. Accessed July 3, 2018 33. Linnan M, Rahman A, Scarr J, et al. Child drowning: evidence for a newly recognized cause of child mortality in low and middle income countries in Asia. https://www.unicef-irc.org/ publications/663-child-drowning-evidence-for-a-newly-recognized-cause-of-child-mortality-inlow-and.html. Published May 2012. Accessed July 3, 2018

PGCH_ch19_339-358.indd 357

8/20/18 8:24 AM

358 Part 4: Models for Global Health Research

34. Rahman F, Bose S, Linnan M, et al. Cost-effectiveness of an injury and drowning prevention program in Bangladesh. Pediatrics. 2012;130(6):e1621–e1628 35. Hyder AA, Alonge O, He S, et al. Saving of children’s lives from drowning project in Bangladesh. Am J Prev Med. 2014;47(6):842–845 36. Kumar S, Nilsen WJ, Abernethy A, et al. Mobile health technology evaluation: the mHealth evidence workshop. Am J Prev Med. 2013;45(2):228–236 37. National Institutes of Health Fogarty International Center. Fogarty launches new program to spur mobile health innovations. http://www.fic.nih.gov/News/Pages/2014-mobile-health-awards.aspx. Published September 13, 2014. Accessed June 26, 2018 38. Fullman N, Barber RM, Abajobir AA, et al. Measuring progress and projecting attainment on the basis of past trends of the health-related Sustainable Development Goals in 188 countries: an analysis from the Global Burden of Disease Study 2016. Lancet. 2017;390(10100):1423–1459 39. International Road Assessment Programme. Vaccines for Roads. 3rd ed. Hampshire, United Kingdom: International Road Assessment Programme; 2015. http://downloads.irap.org/Vaccines_ for_roads_3/Vaccines_for_Roads_3.pdf. Accessed June 26, 2018 40. National Highway Traffic Safety Administration. The New Car Assessment Program suggested approaches for future program enhancements. DOT HS 810 698. https://www.safercar.gov/ staticfiles/safercar/pdf/810698.pdf. Published January 2007. Accessed June 26, 2018 41. New Car Assessment Programme for Latin American and the Caribbean. About us. http://www.latinncap.com/en/about-us. Accessed June 26, 2018 42. New Car Assessment Programme for Latin American and the Caribbean. Airbags are not substitutes for seatbelts. How safe is your car? http://www.latinncap.com/en/?pg5press_ item&id5850a23e752f7d6. Published March 2018. Accessed June 26, 2018 43. Peck M, Falk H, Meddings D, Sugerman D, Mehta S, Sage M. The design and evaluation of a system for improved surveillance and prevention programmes in resource-limited settings using a hospital-based burn injury questionnaire. Inj Prev. 2016;22(Suppl 1):i56–i62 44. World Health Organization. Injuries and Violence: The Facts 2014. Geneva, Switzerland: World Health Organization; 2014. http://apps.who.int/iris/bitstream/10665/149798/1/9789241508018_ eng.pdf?ua51. Accessed June 26, 2018 45. Bloomberg Philanthropies. Leading the worldwide movement to improve road safety 2010–2012. http://www.bloomberg.org/content/uploads/sites/2/2014/04/Bloomberg_Road_Safety_Midway_ Report_Final.pdf. Accessed June 26, 2018

PGCH_ch19_339-358.indd 358

8/20/18 8:24 AM

359

CHAPTER 20

A Global Snapshot of Child Maltreatment and Child Protection Howard Dubowitz, MD, MS, FAAP

abstract There is ample evidence that child maltreatment (child abuse and neglect) is a prevalent problem, globally. Every 2 years since 1982, the International Society for the Prevention of Child Abuse and Neglect (ISPCAN) conducts a survey to assess the state of child maltreatment and child protection internationally. This chapter is excerpted and based on World Perspectives on Child Abuse, 11th Edition.1* Those wishing to read the full report, including detailed information on individual countries, can obtain a copy from ISPCAN at www.ispcan.org. It is naturally difficult to cover the entire world and to capture what is happening related to child maltreatment and child protection in many countries in any depth. Nevertheless, data from this survey offer a valuable snapshot of policies and practices pertaining to child maltreatment in different regions of the world and according to country income level. With members in more than 100 countries, ISPCAN has the capacity to identify knowledgeable professionals in the field of child maltreatment. ISPCAN initiated the current survey with respondents to past surveys. In addition, potential participants thought to be familiar with child protection in their countries were sought from ISPCAN membership. ISPCAN and executive council members were also asked to reach out to their networks, particularly in countries in which a respondent had not been identified. In addition to individual connections, ISPCAN works with national organizations in several countries as well as other international organizations. They too helped identify key informants to complete the survey. Repeated efforts were made to reach respondents in as many countries as possible.

* This chapter is excerpted and adapted with permission from Dubowitz H, ed. World Perspectives on Child Abuse. 11th ed. Aurora, CO: International Society for the Prevention of Child Abuse and Neglect; 2014:1–274. Copyright © 2014 International Society for Prevention of Child Abuse and Neglect (ISPCAN).

PGCH_ch20_359-380.indd 359

8/20/18 8:24 AM

360 Part 4: Models for Global Health Research

Of the 96 countries with identified respondents, 76% completed the survey. Of the 73 countries represented, 10 were from Africa, 14 from the Americas, 25 from Asia, and 23 from Europe; Oceania was represented by just Australia. Using designations of the World Bank, there was good representation of high- and middle-income countries (33 for each), but only 7 responses were from low-income countries. Caution is naturally needed when interpreting findings based on low numbers. The editor, together with an international advisory committee, developed the survey, building on prior iterations. Participants were invited to complete the survey, administered online using SurveyMonkey. Each respondent was e-mailed a link to the survey. They were also encouraged to seek input from colleagues when necessary, to help ensure the accuracy of the information. It is inherently difficult to know the many aspects of child protection in one’s country, especially when systems are not centralized and considerable variation may exist. It was beyond the scope of this project to check the accuracy of responses. These data, therefore, may not always accurately represent the complex picture or the variations within a country. The results of the survey help inform the status of maltreated children globally and likely system and programmatic interventions needed to ameliorate the status of children worldwide.

OPERATING PRINCIPLES INCLUDED (SEE PART 1.) 1. Population/epidemiology (population-specific and local data) 2. Positive strategies (rigorous, evidence based, ethically sound, teachable, replicable, sustainable) Competencies Addressed: R1, R4 See Chapter 8, Global Health Research Competencies.

Key References Gilbert R, Widom CS, Browne K, Fergusson D, Webb E, Janson S. Burden and consequences of child maltreatment in high-income countries. Lancet. 2009;373(9657):68–81 MacMillan HL, Wathen CN, Barlow J, Fergusson D, Leventhal JM, Taussig HN. Interventions to prevent child maltreatment and associated impairment. Lancet. 2009;373(9659):250–266

PGCH_ch20_359-380.indd 360

8/20/18 8:24 AM

361 Chapter 20: A Global Snapshot of Child Maltreatment and Child Protection

Teaching Points 1 The International Society for the Prevention of Child Abuse and Neglect

(ISPCAN) surveys nations to assess the state of child maltreatment and child protection internationally, using the globally recognized categories of child maltreatment.

2 Countries differ in what they view as child maltreatment and in their surveillance systems. Therefore, it is often difficult to determine accurate national estimates of child maltreatment.

3 National policies on child maltreatment include regulations regarding reporting systems, judicial responses to child maltreatment, and services for those who experience maltreatment.

4 Services for child maltreatment include services for parents, services for children, and general services. “Moderately or usually available” services vary considerably across regions and country income levels and are often in short supply.

5 The barriers to preventing child maltreatment that survey respondents rated most significant were limited governmental resources and a lack of trained professionals.

6 Funding for services to prevent and address child maltreatment is not adequate in any country.

What Is Considered Child Maltreatment? There is considerable agreement across regions and country income levels in many areas regarding what is considered to be child maltreatment (Table 20-1). Most respondents considered a failure to provide adequate food, clothing, or shelter; commercial sexual exploitation; and emotional abuse (eg, belittling a child) as forms of child maltreatment. Social conditions, defined as child maltreatment by around 90% of respondents, included physical beating of a child by any adult, child prostitution, infanticide, and child labor younger than 12 years. It is noteworthy that most respondents considered emotional abuse as child maltreatment, although it is unlikely that this problem is addressed by most child welfare agencies. Psychological neglect was also thought to be a form of child maltreatment by 78% of respondents. Similarly, 77% of respondents considered children’s exposure to intimate partner (or domestic) violence as child maltreatment. These high rates suggest increasing awareness that child maltreatment is hardly limited to physical and sexual abuse. Other behaviors less often viewed as child maltreatment included parent mental illness affecting the child (49%), female circumcision/female genital mutilation (60%), and children serving as soldiers (66%). Views varied greatly by region, with, for example, 80% of African countries considering female circumcision as child maltreatment, compared with 38% of Asian countries. The strong

PGCH_ch20_359-380.indd 361

8/20/18 8:24 AM

Country Income Level

Africa

Americas

Asia

Europe

Oceania

High

Middle

Low

(N 5 73)

(n 5 10)

(n 5 13)

(n 5 26)

(n 5 23)

(n 5 1)

(n 5 33)

(n 5 33)

(n 5 7)

Physical discipline (eg, spanking, hitting to correct behavior)

53

50

54

42

70

0

52

52

71

Failure to provide adequate food, clothing, or shelter (neglect)

90

90

92

85

96

100

97

85

86

Failure to seek medical care for child based on religious beliefs

77

90

62

73

83

100

82

73

71

Exposing child to pornography

86

70

92

77

100

100

97

82

57

Commercial sexual exploitation

90

90

77

92

96

100

91

88

100

Involving a parent or caregiver toward a child

Abandonment

88

90

85

88

87

100

94

85

71

Emotional abuse (eg, repeated belittling or insulting of a child)

90

100

100

81

91

100

94

85

100

Psychological neglect (eg, failure to provide ­emotional support/attention)

78

100

77

69

78

100

82

73

86

Parental substance abuse affecting the child

67

70

77

65

65

0

64

70

71

Child witnessing intimate partner (or domestic) violence

77

90

77

62

87

100

79

79

57

362

Region Total

Part 4: Models for Global Health Research

PGCH_ch20_359-380.indd 362

Table 20-1. Behaviors Generally Viewed as Child Maltreatment by Region and Country Income Level (Percentages)

8/20/18 8:24 AM

PGCH_ch20_359-380.indd 363

Social conditions and behaviors affecting child safety, health, and development Physical beating of a child by any adult

89

80

92

88

91

100

88

91

86

Children living on the street

84

100

92

69

87

100

79

88

86

Prostituting a child

92

90

92

88

96

100

91

94

86

88

80

92

81

96

100

88

91

71

60

80

62

38

74

100

73

48

57

Forcing a child to beg

82

80

77

81

87

100

82

88

57

Abuse by another child

79

80

85

69

91

0

76

82

86

Children serving as soldiers

66

60

54

65

74

100

79

52

71

Child labor younger than 12 y

88

100

85

88

83

100

82

91

100

Slavery

75

80

62

81

74

100

76

79

57

Child marriage

73

100

54

65

78

100

73

70

86

Adapted with permission from Dubowitz H, ed. World Perspectives on Child Abuse. 11th ed. Aurora, CO: International Society for the Prevention of Child Abuse and Neglect; 2014:10–11.

363

8/20/18 8:24 AM

Chapter 20: A Global Snapshot of Child Maltreatment and Child Protection

Female/child infanticide Female circumcision/female genital mutilation

364 Part 4: Models for Global Health Research

disapproval in Africa is encouraging, although the countries represented were not necessarily those where the practice is widespread. Only 54% of countries in the Americas viewed child soldiers as child maltreatment, compared with 74% of European countries. Caution is needed here, and in other areas, as there may be strong disapproval even if a practice is not formally defined as child maltreatment. One of the behaviors least often considered as child maltreatment was the use of physical discipline (53%). Approximately 50% of respondents across most regions defined this as child maltreatment, in contrast to 70% in Europe. This suggests that physical discipline, despite considerable evidence of its potential harm,2 remains an accepted disciplinary practice in many countries. It is remarkable that some behaviors and conditions were not considered child maltreatment by all. Examples include slavery (62% of those in the Americas), abandonment, and infanticide (71% in low-income countries). It seems there would be good agreement that such extreme conditions are devastating (or lethal) for children. Again, it is likely that the responses reflect what legal systems consider child maltreatment, rather than acceptance or complacency. Conditions such as forcing a child to beg, female genital mutilation, slavery, and Internet solicitation were considered child maltreatment by only 57% of low-income countries. This could reflect unfortunate acceptance of these pervasive problems, with limited resources to address them. One other finding that stands out is the relatively few Asian countries where abuse or neglect in institutions, such as schools and psychiatric facilities, was considered child maltreatment.

Trends in the Incidence of Child Maltreatment The survey is not a precise method for determining changes in the incidence of child maltreatment or for comparing rates across regions or countries. Not only do countries differ in what is viewed as child maltreatment, but their surveillance systems also vary considerably. For example, 18 respondents indicated that their official counts of child maltreatment exclude certain subgroups, such as aboriginal children, migrants, street children, or various native populations. For these reasons, it is often difficult to determine good national estimates of child maltreatment, and it is not feasible at this time to make an international estimate. Respondents were asked how the number of official records of child maltreatment might have changed over the past 4 years, considering each type of child maltreatment. Of the approximately 40 countries with responses, more than half said that child maltreatment had increased during this period. Slightly more than half indicated increased physical, sexual, and emotional abuse and neglect. The reported increases are troubling but may be due to increased surveillance or awareness. Newly implemented reporting systems often document increases because more professionals are trained to identify and respond to child maltreatment. Other factors could influence child maltreatment rates in countries with long-standing surveillance systems, such as changes in laws and policies or an economic downturn. Overall, the likely upward incidence of child maltreatment in more than half of countries reporting on this item is clearly concerning.

PGCH_ch20_359-380.indd 364

8/20/18 8:24 AM

365 Chapter 20: A Global Snapshot of Child Maltreatment and Child Protection

National Policies Addressing Child Maltreatment A national policy should guide institutions and individuals in responding to concerns about possible child maltreatment. Most respondents (93%) indicated that their country has such a policy, with almost two-thirds having been established prior to 2000. It goes without saying that establishing a national policy may be an important first step, but implementation is needed, and this requires appropriate institutional and professional capacity and support. Higher income countries were more likely to have initiated policies earlier than middle- and lowincome countries (Table 20-2). It is encouraging to note the progress in the past decade with the development of national policies addressing child maltreatment in 23 countries. It is also encouraging that most countries have government agencies to respond to reports and 77% maintain an official count of child maltreatment cases. Of note, such counts sometimes exclude some subgroups, especially in the Americas. Almost half of the 53 countries with responses included all 4 types of child maltreatment (sexual, physical, and emotional abuse, and neglect) as well as children’s exposure to partner violence in their reporting systems. Another one-third included all forms of child maltreatment but not exposure to partner violence. Twenty-two percent of countries excluded emotional abuse and 16% excluded neglect. When a child dies, perhaps due to child maltreatment, there is a responsibility to clarify the circumstances. This may actually help a grieving family, protect other children in the home, and, sometimes, hold responsible the persons accountable. Such reasoning has been the impetus for developing child death review teams to examine the circumstances of unexpected deaths under uncertain circumstances.3 Forty percent of countries reported having such teams, but only half described having legislative backing for the teams.

Specific Policy Responses to Child Maltreatment The survey probed aspects of national policies pertaining to child maltreatment (Table 20-3). ▶▶ Reporting systems. There is ongoing debate on the pros and cons of mandatory reporting.4 Some argue that it is preferable to have reporting be voluntary, with concerned family members or professionals having the option of whether to refer a family to a public agency. Allowing such discretion is seen as respecting autonomy, avoiding undue pressures, and minimizing stigma. Others consider it important to require that concerns of child maltreatment be reported, given that troubled families often lack insight into their problems and are unlikely to seek help voluntarily. Policies may require some persons (eg, professionals) to report suspected child maltreatment while leaving it voluntary for others. Most countries allowed for voluntary reporting of child maltreatment; this was similar across countries’ income levels. There was much variability

PGCH_ch20_359-380.indd 365

8/20/18 8:24 AM

National law or policy addressing child maltreatment

Country Income Level

Africa

Americas

Asia

Europe

Oceania

High

Middle

Low

(N 5 73)

(n 5 10)

(n 5 13)

(n 5 26)

(n 5 23)

(n 5 1)

(n 5 33)

(n 5 33)

(n 5 7)

93

90

92

92

96

100

97

91

86

Identified government agency to respond to cases

90

100

92

88

87

100

88

91

100

Government agency maintains “official” count of reported child maltreatment

77

70

85

73

78

100

82

73

71

Some subgroups excluded from reporting system

25

10

46

19

26

0

9

24

43

Child death review teams

40

30

38

54

57

100

36

27

14

Legislative backing for child death review teams

19

20

31

15

13

100

18

21

14

Adapted with permission from Dubowitz H, ed. World Perspectives on Child Abuse. 11th ed. Aurora, CO: International Society for the Prevention of Child Abuse and Neglect; 2014:12.

366

Region Total

Part 4: Models for Global Health Research

PGCH_ch20_359-380.indd 366

Table 20-2. Aspects of National Policies Addressing Child Maltreatment by Region and Country Income Level (Percentages)

8/20/18 8:24 AM

PGCH_ch20_359-380.indd 367

Table 20-3. Specific Policies Addressing Child Abuse and Neglect by Region and Country Income Level (Percentages) Region

Country Income Level

Total

Africa

Americas

Asia

Europe

Oceania

High

Middle

Low

(N 5 68)

(n 5 9)

(n 5 12)

(n 5 24)

(n 5 22)

(n 5 1)

(n 5 32)

(n 5 30)

(n 5 6)

Reporting systems 85

100

92

83

77

100

84

87

83

68

67

92

67

55

100

56

87

33

Penalties for professionals who fail to report

44

44

58

46

32

100

44

47

33

Judicial responses Reports must be investigated within a specific period

59

67

67

63

45

100

50

60

100

Provisions for removing child from parents/caregivers

84

100

92

71

86

100

88

83

67

Provisions for removing alleged perpetrator from home

60

78

67

50

64

0

53

63

83

Specific criminal penalties for abusing a child

93

100

100

88

86

100

88

97

100

Requires a separate advocate to represent a child

59

67

67

54

59

0

44

70

83

Requires a child and family needs assessment

76

100

75

67

77

100

78

77

67

Requires that all victims receive services

74

100

75

79

59

0

59

83

100

Development and support for prevention services

59

89

58

50

59

0

56

57

83

Services

Requires that all perpetrators receive services

35

56

33

50

14

0

25

43

50

Provides a specific budget for preventing child maltreatment

31

33

42

21

32

100

44

20

17

367

8/20/18 8:24 AM

Note: Fewer countries are reported here due to 5 not having a national policy addressing child maltreatment. Adapted with permission from Dubowitz H, ed. World Perspectives on Child Abuse. 11th ed. Aurora, CO: International Society for the Prevention of Child Abuse and Neglect; 2014:13–14.

Chapter 20: A Global Snapshot of Child Maltreatment and Child Protection

Voluntary reporting by professionals or individuals Mandatory reporting by professionals or individuals

368 Part 4: Models for Global Health Research

surrounding mandatory reporting, with fewer European and low-income countries requiring reporting, while most countries in the Americas requiring reporting of suspected child maltreatment. Fewer than half of countries reported penalties for professionals failing to make mandated reports. ▶▶ Judicial responses. Almost 60% of countries required reports to be investigated within a specific period. Most had provisions for removing children from maltreating families, but notably fewer had provisions for removing alleged perpetrators from the home. Most countries had criminal penalties for abusing a child. It is surprising that not all had this. Only about two-thirds of countries require legal representation for a child. Contrary to the general pattern of low-income countries having fewer resources, 83% of them reported having advocates representing children, compared with 44% of high-income countries. Once again, a cautionary note about comparisons across country income levels: only 7 low-income countries participated in the survey. ▶▶ Services. It is noteworthy that 74% of respondents reported a requirement that all victims receive some form of service and nearly two-thirds (59%) indicated national support for prevention services. Considerably fewer, however, described a specific budget for prevention, especially in low- and middle-­ income countries. This illustrates the all-too-frequent gap between national policies and the necessary resources to implement them. Only 35% reported policies requiring that all perpetrators receive services.

Investigations, Substantiation, Out-of-Home Placement, and Prosecution The percentages of reported families who were investigated varied greatly across regions. While one-third of countries reported investigating up to 30% of reports, just over a quarter investigated more than 75%. The extent to which countries substantiated reports was equally varied. Two-thirds substantiated fewer than 50% of investigated cases, while one-third substantiated more than 50%. There was more consistency on removal of children from the home and prosecution. Two-thirds reported that a child was removed from the home and that an alleged perpetrator was prosecuted in fewer than 15% of cases. These are both extremely serious measures that require substantial evidence and understandably occur in a minority of cases.

Legal Responses to Child Sexual Exploitation Despite increasing recognition of child sexual exploitation as a somewhat prevalent problem, it is difficult to obtain reliable statistics regarding the response to child sexual exploitation (Table 20-4). It is evident that many countries appear to not pursue those responsible for child sexual exploitation. At the same time, it is striking that a small but significant minority arrest the children who are sexually exploited. Clearly, much remains to be done to better protect children from sexual exploitation.

PGCH_ch20_359-380.indd 368

8/20/18 8:24 AM

369 Chapter 20: A Global Snapshot of Child Maltreatment and Child Protection

Table 20-4. Legal Responses to Child Sexual Exploitation Number of ­Countries Reporting the Practice (n [%]) Often or sometimes prosecute citizens who engage in child sexual exploitation in home country

56 (77%)

Often or sometimes prosecute citizens who engage in child sexual exploitation abroad

28 (38%)

Often or sometimes prosecute foreigners who engage in child sexual exploitation

43 (59%)

Arrest involved children

14 (19%)

Made an arrest of an adult in the last year for child sexual exploitation

41 (56%)

Made an arrest last year for child pornography

47 (64%)

Adapted with permission from Dubowitz H, ed. World Perspectives on Child Abuse. 11th ed. Aurora, CO: International Society for the Prevention of Child Abuse and Neglect; 2014:22.

Services to Address Child Maltreatment Respondents reported on the availability of an array of services addressing child maltreatment in 3 categories: services for parents, services for children, and general services. As shown in Table 20-5, the rates of “moderately or usually available” services varied considerably across regions and country income levels; services were often in short supply. ▶▶ Services for parents. Most services were available in only about a quarter of countries, the exception being substance abuse treatment (49%). As expected, services were far more available in high-income and European countries. Even there, however, only about one-third had therapy programs for perpetrators of sexual abuse. ▶▶ Services for children. More countries reported services for children than they did for parents, although most services were available in only one-third to one-half of countries. Again, European and high-income countries have more services, with middle-income countries occupying an intermediate position. By contrast, only 1 of the 7 low-income countries reported having most of the services. Of interest, while neglect has generally attracted less attention than physical and sexual abuse, services for neglected children were almost as common as for the other forms of child maltreatment. It is striking that despite acknowledgment that family settings are generally preferable for children needing to be placed out of the home,5 institutional care remained rather available, particularly in Europe. ▶▶ General services. The most widely provided services were hospitalization for mental illness (66%) and universal free medical care for children (60%). European and high-income countries again reported more services, while far fewer were available in Africa and low-income countries. Middle-income countries

PGCH_ch20_359-380.indd 369

8/20/18 8:24 AM

Country Income Level

Africa

Americas

Asia

Europe

Oceania

High

Middle

Low

(N 5 73)

(n 5 10)

(n 5 13)

(n 5 26)

(n 5 23)

(n 5 1)

(n 5 33)

(n 5 33)

(n 5 7)

Services for parents Programs for those who neglect a child

27

10

38

15

39

100

45

12

14

Programs for those who physically abuse a child

23

10

31

19

26

100

36

12

14

Programs for those who sexually abuse a child

21

10

15

12

39

0

36

6

14

Home-based services to improve parenting behavior

33

30

23

19

57

0

52

18

14

Substance abuse treatment

49

20

54

35

74

100

73

33

14

Programs for neglected children

36

30

23

27

52

100

52

24

14

Programs for physically abused children

42

20

38

38

57

100

61

30

14

Services for children

Programs for sexually abused children

49

20

62

46

57

100

67

33

43

Substance abuse treatment

45

40

38

38

57

100

64

30

29

Foster care

44

20

46

27

70

100

67

27

14

Group homes for maltreated children

37

20

69

19

48

0

52

27

14

Public shelters for maltreated children

33

20

38

38

30

0

39

30

14

Institutional care for maltreated children

52

20

54

50

70

0

73

39

14

370

Region Total

Part 4: Models for Global Health Research

PGCH_ch20_359-380.indd 370

Table 20-5. Services to Address Child Maltreatment, Reported to be Moderately or Usually Available, by Region and Country Income Level (Percentages)

8/20/18 8:24 AM

PGCH_ch20_359-380.indd 371

General services Case management services to meet families’ basic needs

49

20

46

46

65

100

70

36

14

Financial and other material support

41

10

31

38

61

100

73

18

0

Hospitalization for mental illness

66

50

69

54

83

100

82

58

29

Free child care

22

20

15

15

35

0

24

18

29

60

30

62

62

70

100

64

67

14

48

10

54

50

57

100

61

39

29

Adapted with permission from Dubowitz H, ed. World Perspectives on Child Abuse. 11th ed. Aurora, CO: International Society for the Prevention of Child Abuse and Neglect; 2014:16–17.

371

8/20/18 8:24 AM

Chapter 20: A Global Snapshot of Child Maltreatment and Child Protection

Universal free medical care for children Universal free medical care for all citizens

372 Part 4: Models for Global Health Research

again occupied a middle position. Nevertheless, there were many gaps in social safety nets. For example, only half the countries reported having supportive services to meet families’ basic needs and free medical care for all citizens. One-fifth had free child care.

Strategies to Prevent Child Maltreatment and Perceived Effectiveness Thus far, the focus has been on approaches to children and families where maltreatment is a concern. There is good agreement that it would be far better to prevent child maltreatment from occurring. A 2009 Lancet series provided a comprehensive review of child maltreatment globally and interventions to prevent maltreatment and associated impairment.6 The key messages of the review of the effectiveness of various programs globally included ▶▶ Benefits of the nurse-family partnership home visitation program, which showed generally good evidence in reducing child physical abuse, neglect, and outcomes such as injuries ▶▶ The value of parenting programs, such as Triple P,7 with positive child outcomes ▶▶ The value of hospital- and school-based educational programs to show some promise (but in need of further study) ▶▶ The value of evidence-based therapy, such as cognitive-behavioral therapy (see Appendix C), in the treatment of posttraumatic stress symptoms experienced by children who have been sexually abused and others exposed to violence ▶▶ The value of foster placement in supporting children’s mental health In the International Society for the Prevention of Child Abuse and Neglect (ISPCAN) survey, respondents described whether a particular strategy was used in their country and, if so, whether they perceived it to be effective (Table 20-6). Of note, there was no requirement of evidence supporting a strategy’s effectiveness; limited evaluation research has been done in most countries and for many of the strategies. Also missing here is the extent to which the strategy was used. The 4 most common prevention strategies were media campaigns (90%), advocacy for children’s rights (89%), professional training (89%), and prosecution (86%)—an example of tertiary prevention. The first 2 strategies were equally likely to be used across regions, while professional training was more common in Europe and Asia than in Africa and the Americas. Also, prosecution was more common in European countries (96%) compared with about 75% in other regions. As for the effectiveness of the strategies, around two-thirds thought media campaigns and advocacy were effective versus nearly half thinking prosecution and professional training were effective. Most respondents also reported using 4 additional strategies: improving or increasing local services (75%), universal health care and preventive medical care (73%), improving living conditions (75%), and increasing individual responsibility for child protection (73%). These were rather widely used but only in certain regions. For example, European countries more often reported improving or increasing local services (91%), while countries in the Americas more often

PGCH_ch20_359-380.indd 372

8/20/18 8:24 AM

373 Chapter 20: A Global Snapshot of Child Maltreatment and Child Protection

reported improving families’ basic living conditions (92%). Universal health care was more common in the Americas and Europe (77%, 83%). Between half and two-thirds of users thought these 4 services were effective. Less frequently used strategies included home-based services and support for at-risk parents (44%) and universal home visitation programs for new parents (36%). These numbers, however, mask important regional differences, with 78% of European countries offering home-based services for at-risk parents compared with only one-third of countries in Asia and the Americas, and no countries in Africa. Interestingly, here too these services were considered effective by approximately two-thirds of those using them. Despite good research support for home visiting programs to prevent child maltreatment,8 only 35% of countries had these; most were in high-income European countries. One-third of European countries described having centers for parents to share experiences and concerns. This is an attractive and less intrusive approach to help prevent and address child maltreatment. It was rare in other regions. Overall, European countries provide access to a greater range of prevention strategies than the rest of the world. At the same time, it is encouraging to note how countries at all income levels are employing several prevention strategies. It should be helpful for local professional associations and advocacy groups to ascertain why there are discrepancies in the availability and perceived effectiveness of some strategies. It could be that some were not deemed effective because of inadequate resources to implement them as widely as necessary or in a high-­ quality manner. Evaluation research is sorely needed to clarify what interventions work, under what circumstances. Another consideration is that interventions may be successful with only a portion of the at-risk population (eg, new parents) or are more appropriate for only a certain type of child maltreatment (eg, physical abuse, not neglect). Ideally, there needs to be an array of interventions to tailor the response to meet the individual family’s needs. It is also important to examine how different strategies are, or should be, linked.

Barriers to Preventing Child Maltreatment Despite interest in prevention, there have been considerable barriers to broad implementation of different strategies. Barriers were examined individually and in 2 broad categories: those relating to a country’s economic and social resources (eg, limited government resources, poverty) and those relating to a country’s social norms (eg, sense of family privacy, support for physical punishment). Respondents rated the extent or significance of each barrier, with a rating of 1 reflecting an insignificant factor, 2 a moderately significant barrier, and 3 a very significant barrier (Table 20-7). The barriers to preventing child maltreatment rated most significant were limited governmental resources and a lack of trained professionals. American and African countries added to these barriers the decline in informal support systems, extreme poverty, poorly developed systems of basic health care or social services, and public resistance to prevention efforts. It would be interesting to probe

PGCH_ch20_359-380.indd 373

8/20/18 8:24 AM

Country Income Level

Total

Africa

Americas

Asia

Europe

Oceania

High

Middle

Low

(N 5 73)

(n 5 10)

(n 5 13)

(n 5 26)

(n 5 23)

(n 5 1)

(n 5 33)

(n 5 33)

(n 5 7)

Used service

44

0

31

35

78

100

76

21

0

Of those, % felt service effective

66

0

100

78

50

100

60

86

0

Media campaigns to raise Used service public awareness Of those, % felt service effective

90

90

92

92

87

100

85

97

86

64

67

67

63

60

100

68

59

67

Risk assessment methods Used service

47

30

38

35

70

100

70

27

29

59

67

40

67

56

100

61

56

50

Strategy Home-based services for parents at risk

Of those, % felt service effective Prosecution of offenders

Universal home visitation for new parents

Used service

86

70

77

73

96

100

97

67

71

Of those, % felt service effective

49

33

45

48

60

0

59

41

43

Used service

36

0

38

23

65

0

52

24

0

Of those, % felt service effective

65

0

60

67

67

0

59

75

0

374

Region

Part 4: Models for Global Health Research

PGCH_ch20_359-380.indd 374

Table 20-6. Strategies Used to Prevent Child Maltreatment and Perceived Effectiveness by Region and Country Income Level (Percentages)

8/20/18 8:24 AM

PGCH_ch20_359-380.indd 375

Improving or increasing local services Universal health care and access to preventive medical care Professional training

Advocacy for children’s rights Improving families’ basic living conditions

75

70

62

69

91

100

85

70

57

Of those, % felt service effective

56

14

38

61

71

100

75

43

0

Used service

73

60

77

65

83

100

76

70

71

Of those, % felt service effective

58

50

40

59

68

100

72

48

40

Used service

89

80

77

92

96

100

91

88

86

Of those, % felt service effective

55

25

40

54

73

100

73

41

33

Used service

51

40

54

42

61

100

55

52

29

Of those, % felt service effective

51

25

14

36

86

100

61

47

0

Used service

89

90

92

88

87

100

85

91

100

Of those, % felt service effective

65

56

42

65

80

100

75

50

86

Used service

75

80

92

58

83

100

88

67

57

Of those, % felt service effective

62

25

42

73

79

100

86

36

25

Adapted with permission from Dubowitz H, ed. World Perspectives on Child Abuse. 11th ed. Aurora, CO: International Society for the Prevention of Child Abuse and Neglect; 2014:19–20.

375

8/20/18 8:24 AM

Chapter 20: A Global Snapshot of Child Maltreatment and Child Protection

University programs for students

Used service

Barrier

Country Income Level

Total

Africa

Americas

Asia

Europe

Oceania

High

Middle

Low

(N 5 69)

(n 5 10)

(n 5 12)

(n 5 25)

(n 5 21)

(n 5 1)

(n 5 31)

(n 5 31)

(n 5 7)

2.6

2.8

2.6

2.4

2.6

2.0

2.3

2.7

3.0

Social conditions Limited resources for improving the government’s response to child maltreatment Lack of specific laws related to child maltreatment

1.9

1.9

2.0

2.1

1.7

1.0

1.8

1.9

2.3

Lack of system to investigate reports of child ­maltreatment

2.1

2.4

2.3

2.3

1.8

1.0

1.9

2.3

2.7

Lack of trained professionals

2.5

2.5

2.4

2.6

2.5

1.0

2.3

2.6

2.7

Extreme poverty

2.1

2.7

2.5

2.0

1.9

1.0

1.7

2.3

2.9

Decline in family life and informal support systems

2.2

2.8

2.3

2.3

1.9

2.0

2.0

2.3

2.9

Country’s dependency on foreign investment to sustain local economy

1.7

2.1

1.8

1.7

1.5

1.0

1.4

1.8

2.7

Overwhelming number of children living on their own

1.6

2.1

2.1

1.5

1.2

1.0

1.3

1.6

2.4

Generally inadequate systems of basic health care or social services

2.0

2.4

2.4

1.9

1.7

1.0

1.5

2.3

2.7

Political or religious conflict and instability

1.5

1.9

1.9

1.5

1.2

1.0

1.3

1.6

2.2

Public resistance to prevention efforts

1.9

2.3

2.3

1.8

1.7

1.0

1.6

2.0

2.4

Strong sense of family privacy and parental rights to raise children as they choose

2.2

2.0

2.0

2.4

2.1

2.0

2.1

2.3

2.1

General support for corporal punishment

2.3

2.1

2.3

2.5

2.1

2.0

2.1

2.3

2.6

Little commitment to children’s rights

2.1

2.5

2.2

2.2

1.9

1.0

1.9

2.2

2.7

Social norms

1 5 not a significant barrier; 2 5 moderately significant barrier; 3 5 major significance. Adapted with permission from Dubowitz H, ed. World Perspectives on Child Abuse. 11th ed. Aurora, CO: International Society for the Prevention of Child Abuse and Neglect; 2014:21. a

376

Region

Part 4: Models for Global Health Research

PGCH_ch20_359-380.indd 376

Table 20-7. Barriers to Preventing Child Maltreatment by Region and Country Income Level (Average Scoresa)

8/20/18 8:24 AM

377 Chapter 20: A Global Snapshot of Child Maltreatment and Child Protection

further the nature of the resistance to prevention; possibly efforts to counter corporal punishment? Asian countries emphasized a strong sense of family privacy, slightly more than the other countries, and described poverty and lack of basic health care or social services as slightly less significant. Of interest, a lack of laws pertaining to child maltreatment was rated 1.9 (out of 3), indicative of a moderate problem. Support for corporal punishment was also rated as a somewhat significant barrier. In general, lower income countries identified most barriers as very significant, especially in contrast to better social conditions in high-income countries. Once again, middle-income countries occupied an intermediate position. All regions reported a decline in family life and support systems to be a significant barrier. It is very clear that there are no easy answers to such systemic problems, but it is also clear that ignoring these and only focusing on individual families will not be enough. The bottom line in Table 20-7 is telling: only a lukewarm commitment to children’s rights. Much remains to be done to overcome these barriers.

Funding for Child Abuse and Neglect Prevention and Treatment One-third of respondents indicated major governmental funding; 3 countries reported none. Twenty-one percent indicated major funding from nongovernmental agencies, and only 2 countries indicated no nongovernmental funding. Funding levels varied by country income level, with 48% of high-income countries indicating major governmental funding, compared with 21% of middle-­ income countries and no low-income countries. By contrast, more low-income countries reported major nongovernmental funding (40%) than middle- (27%) or high-income countries (13%). As expected, the primary funding sources for prevention efforts in low-income countries are international nongovernmental organizations (NGOs) such as the United Nations Children’s Fund, the World Bank, and international relief organizations. By contrast, government (national, state, or local) provides the primary funding for child maltreatment interventions in high-income countries. It is evident that funding for services to prevent and address child maltreatment is not adequate in any country. This remains a major challenge to building greater support from all possible sources. In addition, enabling help from family members and communities is another much-needed approach.

Involvement by Community Sectors in Addressing Child Maltreatment Respondents were asked to describe the involvement of 10 different sectors in supporting child maltreatment treatment and prevention services. For each sector, respondents rated whether the sector had no, minimal, moderate, or high levels of involvement. As illustrated in Table 20-8, those sectors most often reported as moderately or highly involved included community-based NGOs (82%), public social service agencies (75%), hospitals and medical centers (71%), and courts and law enforcement (68%). The least involved sector was the local

PGCH_ch20_359-380.indd 377

8/20/18 8:24 AM

Country Income Level

Total

Africa

Americas

Asia

Europe

Oceania

High

Middle

Low

(N 5 73)

(n 5 10)

(n 5 13)

(n 5 26)

(n 5 23)

(n 5 1)

(n 5 33)

(n 5 33)

(n 5 7)

Hospitals, medical centers

71

80

77

69

65

100

76

70

57

Mental health agencies

55

50

46

50

65

100

67

48

29

Businesses, factories

7

20

0

8

4

0

9

3

14

Schools

56

50

38

58

65

100

70

55

0

Public social service agencies

75

70

77

65

87

100

85

76

29

Community-based nongovernmental organizations

82

90

85

73

87

100

79

85

86

Religious institutions

30

40

46

23

26

0

30

30

29

Voluntary civic organizations

49

60

31

46

57

100

45

52

57

Courts, law enforcement

68

60

62

73

70

100

76

67

43

Universities

29

10

23

31

35

100

39

24

0

Adapted with permission from Dubowitz H, ed. World Perspectives on Child Abuse. 11th ed. Aurora, CO: International Society for the Prevention of Child Abuse and Neglect; 2014:18.

378

Region

Part 4: Models for Global Health Research

PGCH_ch20_359-380.indd 378

Table 20-8. Moderate to High Levels of Involvement of Community Agencies or Institutions in Treatment and Prevention Services for Child ­Maltreatment by Region and Country Income Level (Percentages)

8/20/18 8:24 AM

379 Chapter 20: A Global Snapshot of Child Maltreatment and Child Protection

business community, with only 7% reporting business as being moderately or highly involved. Universities and religious institutions were also reported to be playing a limited role. There were a few regional differences in involvement. More African and low-income countries reported involvement of businesses and factories compared with other regions and higher income countries. Religious institutions appeared more active in Africa and the Americas compared with Asia and Europe. In low-income countries, schools and universities were described as not being at all involved. Given that child maltreatment affects all facets of societies and that all sectors can play helpful roles, there is a need to better engage those who have quite limited involvement.

Summary This chapter offers a somewhat representative view of the state of child maltreatment and child protection across different regions of the world and according to countries’ income levels. Low-income countries face huge challenges that compromise children’s well-being and protection. Without equating the circumstances, middle- and high-income countries are also grossly lacking in resources, and much remains to be done for them to invest in their children. Enough is known about the potential harm of child maltreatment to support a compelling argument for building societies that strengthen families, support parents and caregivers, and promote children’s health, development, and safety; doing so should also help prevent child maltreatment. There are clear areas of agreement (eg, having a national policy addressing child maltreatment), but there are also striking differences (eg, mandatory reporting). In general, there is a fairly good agreement among high- and middle-income countries, whereas low-income countries differed in reporting that certain experiences constituted child maltreatment (eg, exposure to pornography). This may reflect less-developed child welfare and legal systems rather than complacency about such conditions. Scarce resources may also focus attention on other priorities. National laws and policies that address child maltreatment exist in most countries, many of which have government agencies to help address the problem. When examining these policies, some limitations are apparent. Few are widely enforced—anywhere—and governmental support is sorely lacking. Very few services were deemed adequate in at least two-thirds of the countries. Once again, low-income and African countries reported the fewest resources. Adequate funding is naturally critical. High-income countries have better government support than middle-income countries; low-income countries reported no government funding, relying instead on NGOs. At least half the countries reported using the different prevention strategies listed and most had tried some of them. It is striking, however, that these were often considered to be ineffective. For example, one-third described professional

PGCH_ch20_359-380.indd 379

8/20/18 8:24 AM

380 Part 4: Models for Global Health Research

training as having no effect. Still, two-thirds thought they were effective, and a glass two-thirds full is encouraging. The basis for those perceptions, however, is uncertain, as evaluations of strategies and programs remain relatively rare. There is much need for such evaluation to guide policy makers and program development. Finally, with regard to perceived barriers to addressing child maltreatment, Europeans thought public acceptance of corporal punishment was a major barrier, probably reflecting high expectations. Low-income countries described the lack of child welfare and basic health services (often in a context of conflict and instability) and few services to meet children’s and families’ needs. All regions reported a decline in family life and support systems to be a significant barrier. It is clear that there are no easy answers to such systemic problems, but it is also clear that better policies and programs are much needed to better ensure children’s well-being and to prevent their abuse and neglect.

References 1. Dubowitz H, ed. World Perspectives on Child Abuse. 11th ed. Aurora, CO: International Society for the Prevention of Child Abuse and Neglect; 2014:1–274 2. Gershoff ET. Corporal punishment by parents and associated child behaviors and experiences: a meta-analytic and theoretical review. Psychol Bull. 2002;128(4):539–579 3. Hochstadt NJ. Child death review teams: a vital component of child protection. Child Welfare. 2006;85(4):653–670 4. Mathews B. Developing countries and the potential of mandatory reporting laws to identify severe child abuse and neglect. In: Deb S, ed. Child Safety, Welfare and Well-being: Issues and Challenges. New Delhi, India: Springer India; 2016:335–350 5. Frank DA, Klass PE, Earls F, Eisenberg L. Infants and young children in orphanages: one view from pediatrics and child psychiatry. Pediatrics. 1996;97(4):569–578 6. MacMillan HL, Wathen CN, Barlow J, Fergusson D, Leventhal JM, Taussig HN. Interventions to prevent child maltreatment and associated impairment. Lancet. 2009;373(9659):250–266 7. Triple P in a nutshell. https://www.triplep.net/glo-en/find-out-about-triple-p/triple-p-in-a-nutshell. Accessed July 15, 2018 8. Lane WG. Prevention of child maltreatment. Pediatr Clin North Am. 2014;61(5):873–888

PGCH_ch20_359-380.indd 380

8/20/18 8:24 AM

381

CHAPTER 21

Developing the Agenda for Global Child Health at the American Academy of Pediatrics Jonathan D. Klein, MD, MPH, FAAP Errol R. Alden, MD, FAAP

abstract There are challenges in establishing guidelines for care and in implementing evidence-based recommendations and guidelines in many countries. This is a reflection of nationalistic approaches to governance and, more specifically, national choices governing the social strategies that are deemed acceptable to decision-makers. These challenges are not limited to low- and middle-income countries; within the United States and other high-income countries, individual state and community governmental jurisdictions can be resistant to new evidence or to examples of successes that work in neighboring governmental units.1 But despite these nationalistic tendencies, efforts to share successful models for pediatric education have helped spread innovation and quality improvements in care to many countries over the past several decades. This chapter reviews some of the factors that made this spread possible, including the rapid growth and institutionalization of global health training in US residency programs; addresses the future development of competencies and ethical standards within the current framework of the UN Sustainable Development Goals; and provides a perspective on the role of US pediatric associations in setting and supporting the agenda for global child and adolescent health research, practice, and education.

PGCH_ch21_381-390.indd 381

8/20/18 8:25 AM

382 Part 4: Models for Global Health Research

OPERATING PRINCIPLES INCLUDED (SEE PART 1.) 1. Population/epidemiology (population-specific and local data) 2. Persistence (genuine advocacy) 3. Partnership (respectful, bidirectional modalities) Competencies Addressed: R1–R4, E1–E4 See Chapter 7, Global Health Education Faculty Competencies, and Chapter 8, Global Health Research Competencies.

Key References St Clair N, ed. Global Health in Pediatric Education: An Implementation Guide for Program Directors. Chapel Hill, NC: American Board of Pediatrics; in press. https://www.abp.org/ sites/abp/files/pdf/globalhealthinpediatriceducationimplementationguideforprogram directors.pdf. Accessed July 18, 2018 Pitt MB, Gladding SP, Suchdev PS, Howard CR. Pediatric global health education: past, present, and future. JAMA Pediatr. 2016;170(1):78–84

Teaching Points 1 Successful models for pediatric education exist. 2 Organizations such as the American Academy of Pediatrics can help spread

innovation and quality improvement methodologies to improve outcomes in child populations globally.

3 Global health training in US residency programs can help develop competencies inclusive of ethical standards for education, research, and clinical care that can also be spread globally.

4 Progress can be made toward achieving sustainable goals for children and families worldwide.

History/Context: From the 1960s to the 1980s The US government’s investment in global health research and research capacity building dates to the 1968 founding of the John E. Fogarty International Center at the National Institutes of Health. Congressman Fogarty had unsuccessfully championed establishing an international health research institute to “reduce suffering and foster peace and prosperity throughout the world,” and the center was created by President Johnson’s executive order after Fogarty’s unexpected death in 1968. Currently, the Fogarty International Center reaches more than 100 countries, supporting partnership and capacity development and research grants throughout the world.2 In pediatrics, one founder of the current era of global child health was Charles A. Janeway, pediatrician in chief at Boston Children’s Hospital from 1946 to 1976. According to a biography of Dr Janeway by Drs Haggerty and Lovejoy,

PGCH_ch21_381-390.indd 382

8/20/18 8:25 AM

383 Chapter 21: Developing the Agenda for Global Child Health at the American Academy of Pediatrics

Dr ­Janeway both “taught modern pediatrics to thousands of physicians throughout the developing world…[and] brought many of them to the U.S. for further ­training” and “founded childrens’ hospitals in several countries.”3 He also was instrumental in reviving the International Pediatric Association (IPA) after the end of World War II (personal communication, 2014). Originally founded in Paris in 1910 by European pediatricians, Dr Janeway believed fully in the purpose of the IPA “to foster relationships among the pediatricians of the world to promote education and sharing of information about child health.” The American Academy of Pediatrics (AAP) was founded in 1930 over pediatrician support for and American Medical Association opposition to the ­Sheppard– Towner Act of 1921 and establishment of the Children’s Bureau. Early organizing by the AAP resulted in chapters throughout most of Latin America, in addition to state and provincial chapters in the United States and Canada. With the founding of the AAP journal, Pediatrics, in 1948, there was substantial and ongoing discussion about the needs of children globally, and an AAP study reporting on those needs was presented at the fifth IPA Congress in New York that same year.4 Global health was not a major focus of the AAP through the 1960s and 1970s. One exception in this era is attributable to Paul Wherle, MD, who had helped lead the World Health Organization (WHO) smallpox eradication efforts while serving as chair of pediatrics at the University of Southern California for 25 years. Dr Wherle served as AAP president in the late 1970s and was instrumental in successfully bringing the IPA Congress to Hawaii in the early 1980s.5 As it is today, many domestic health and social issues and efforts to better unite and find common cause between academic researchers and traditional private practice–based clinicians took precedence over global health on the AAP agenda. However, these disparate themes converged under Dr Robert Haggerty’s leadership in the 1980s. Dr Haggerty had developed his academic career under Dr ­Janeway’s mentorship and, at the time of his AAP presidency in 1984–1985, was both a dedicated internationalist and a founder of the concept of community pediatrics (see Appendix C) and the field of general academic pediatrics. In Dr Haggerty’s recollections for his AAP Oral History, he noted that Dr Janeway had first encouraged him to submit presentations to the IPA in 1959.6 Dr Haggerty also led the formation of education, research, and government affairs councils at the AAP in the late 1980s. Unlike the current AAP structures with similar names, these councils were specifically designed to engage broad representatation from US academic pediatric organizations (much like the Federation of Pediatric Organizations does today.) Dr Haggerty’s leadership helped bring research efforts to the AAP, including the initiation of the AAP Periodic Survey of Fellows and the creation of the Pediatric Research in Office Settings (PROS) practice-based research network. As AAP past president, Dr Haggerty served 6 years on the IPA Standing Committee and then became IPA Executive Director from 1993 to 1998, with the major focus of his tenure being the IPA role in pediatric education. It was in this context that Dr Errol Alden joined the AAP staff. While serving as chair of the Department of Pediatrics at the Uniformed Services University of the Health Sciences, Bethesda, MD, and as chief of pediatrics at Walter Reed Army Medical Center, Dr Alden recalls having been drawn into activities by the

PGCH_ch21_381-390.indd 383

8/20/18 8:25 AM

384 Part 4: Models for Global Health Research

inclusion and engagement of academicians in the AAP councils. After retiring from the military in 1987, Dr Alden, a neonatologist, joined the AAP staff as director of the Department of Education and served in several other roles, including as AAP president/chief executive officer from 2004 to 2015. As head of the AAP Department of Education, he oversaw the creation and growth of educational programs on neonatal resuscitation and the Pediatrics Review and Education Program (PREP). It was also during his tenure in education that the AAP began publishing policy statements and clinical and technical reports in Pediatrics. This was initially objected to by the journal editors, who believed the journal should be reserved for scientific papers; however, early periodic surveys found that people were reading the policies and felt they were highly relevant to child health practice, both in the United States and around the world.

Current Practices

Neonatal Resuscitation Program and Red Book: Global Educational Resources In addition to the Pediatrics journal and publication of AAP policies, 2 other activities helped expand the AAP role as a global child health resource: the Neonatal Resuscitation Program (NRP) and the Red Book: Report of the Committee on Infectious Diseases. Notably, both of these texts are often referenced as international standards. The Red Book, especially prior to the development of online resources, serves as an authoritative guide for infectious diseases. A mainstay of general pediatric practice, the Red Book is developed by infectious disease experts and is highly salient and useful to primary care clinicians in many different settings. Immunization standards and the harmonization between the AAP and the Centers for Disease Control and Prevention Advisory Committee on Immunization Practices further helped validate the authoritative nature of the Red Book. Additionally, immunization advances were relatively easy to advocate for in other countries. Dr Haggerty and others cite examples of Dr Samuel Katz, Dr Louis Cooper, and other AAP leadership helping convene country leaders and making successful interventions in the mid-1990s to help end diphtheria epidemics in the former Soviet Union and Central Asian republics, and in helping initiate routine measles immunization in Japan.6 In contrast with pediatric infectious disease experts, the AAP section for newborn medicine is that field’s international subspecialty society. The NRP drew heavily on the expertise of neonatologists; however, the newborn care field did not have the same history of separation between academic and private practitioners as other pediatric disciplines. Combined with an “unselfish imperative” and altruistic involvement with patients and communities modeled by AAP volunteers, the spread and successes of the NRP served to build trust and equity with the public, funders, and other national pediatric societies around the world (W. Keenan, personal communication, March 2017). Additionally, after the first NRP international efforts spread in the early 1990s in Romania, the AAP Board of Directors specifically discussed and reemphasized the organization’s mission statement,

PGCH_ch21_381-390.indd 384

8/20/18 8:25 AM

385 Chapter 21: Developing the Agenda for Global Child Health at the American Academy of Pediatrics

declaring the AAP “Dedicated to the Health of All Children,” which reflects a continued commitment to the health of global and domestic populations. The NRP is published through a partnership between the AAP and the American Heart Association, which also included an agreement between the sponsoring organizations that resuscitation would not be a profit center. Instead, the income from the program was to be used to support research to generate needed evidence toward improving resuscitation guidelines. This led the way to development of the International Liaison Committee on Resuscitation (ILCOR) as a forum for examining the evidence base, supporting research and a research community in resuscitation, and translating the resulting research evidence into practice. The development of a “train the trainers” model for the NRP further helped combined standards from state-of-the-art research with practical educational methods. This was first started in the United States and rapidly spread to other countries, including low- and middle-income countries. Through the 1990s, there was rapid growth of AAP sections based on members’ special interests and also growth of community pediatrics and initiation of the Community Access to Child Health (CATCH) program. The CATCH program provided small grants for needs assessments and implementation of community pediatric projects identified by individual AAP members, in contrast to programs or grants that supported state AAP chapters and national AAP priorities. These models were used as AAP global health activities continued to develop, with the formation of a Section on International Child Health (SOICH) and adoption and promotion of an international CATCH (iCATCH) program of mini-grants. The SOICH provided an organizational home for members interested in global health to convene and share education and research content at AAP meetings. The SOICH leadership developed disaster response curricula and helped maintain a roster of experts, and the SOICH meeting at the AAP National Conference & Exhibition served as a venue for international visitors to share their expertise.

Global Goals and Commitments By the first decade of the 21st century, the AAP had established an agenda of global publishing, leadership participation in national and regional scientific and educational meetings, and mutually respectful relationships among pediatric organizations. However, as the 15-year course of the WHO Millennium Development Goals (MDGs) progressed, it became clear that newborn survival goals would not be met unless there was substantially greater investment in newborn survival intervention than that which could be done simply by frontline health care workers, not just higher technology resuscitation training appropriate for inpatient or birthing facilities, delivered by physicians. In response to this need, AAP newborn survival leaders, along with partners including the US Agency for International Development (USAID), Laerdal and its foundation, and Johnson & ­Johnson, began to invest in development, testing, and rapid dissemination of resuscitation tools that were affordable and practical for use in low-resource settings. The development of Helping Babies Breathe (HBB) and the AAP entry into a USAID public/

PGCH_ch21_381-390.indd 385

8/20/18 8:25 AM

386 Part 4: Models for Global Health Research

private global developmental alliance for HBB ushered in a new phase of global and national organizational relationships for AAP global health activities. As with many domestic AAP priorities, AAP staff sought external funds to be able to support members’ interests and projects to improve global child health and identified opportunities to bring public and professional attention to AAP programs. In the case of newborn resuscitation, this led to the AAP receiving grants from and signing memorandums of understanding with USAID and other alliance members and to engagement with WHO and other UN agencies, both in demonstrating and growing the evidence base and in specific commitments to programs to contribute to the MDGs. In 2011, a strategic plan for AAP global health was developed, leading to reaffirmation of the focus on all children by the AAP Board of Directors and to a commitment to spreading and sharing newborn survival educational interventions made to the UN Secretary General Every Woman Every Child initiative. The AAP Every Woman Every Child commitment and HBB have led the past several years of AAP global health activities, including expansion of HBB through the Survive & Thrive Global Development Alliance with USAID and other private- and public-sector partners. The AAP shaped this expansion, Helping Babies Survive (HBS), from the beginning to include a broader approach to child and adolescent health, an emphasis on strengthening child health care delivery, and a goal of developing leaders in the United States and abroad, in addition to the newborn survival agenda. Expansion of HBB to HBS broadened the newborn package to include essential newborn care and care for the small baby and other programs to translate evidence into practice, building on the role of pediatric leadership and pediatric organizations in education and sustainability, and leaning into the successes from NRP in countries willing to engage with the AAP on other issues. The AAP Julius B. Richmond Center of Excellence, dedicated to the elimination of children’s exposure to tobacco and secondhand smoke, also provided initial support to expand AAP tobacco control and secondhand smoke interventions into global tobacco control for child health, adapting the successful AAP advocacy and clinical improvement training models to address global health priorities. Dr Jonathan Klein, founding director of the Richmond Center in 2006, was recruited to serve as AAP associate executive director in 2009, and tasked with further expanding this model to address global immunization and a broader noncommunicable disease agenda, calling for comprehensive prevention and treatment consistent with Bright Futures and the medical home for children with special health care needs, with relevant commitments to noncommunicable disease prevention and treatment also being made by the AAP Board of Directors. Advocacy training, combined with AAP expert technical support and mentorship, was extended to global immunization efforts, including efforts to engage domestic AAP members in supporting the US government’s role in global immunization funding and to engage national pediatric societies in other donor countries and highly affected countries to engage with their governments for support for improved access and delivery of vaccines.

PGCH_ch21_381-390.indd 386

8/20/18 8:25 AM

387 Chapter 21: Developing the Agenda for Global Child Health at the American Academy of Pediatrics

Many AAP members are involved in one-to-one institutional or professional exchanges between academic programs; however, the broader engagement of countries and their pediatric leaders by the AAP helped broaden these contacts to include improving child and adolescent health at the national level and supported pediatric and other child health leaders engaged in these efforts. These projects brought new funding streams to the AAP to engage child health leaders in other countries; additionally, the AAP invested for the first time in Washington, ­ DC–based advocacy staff to track foreign aid and health legislation and support and mobilize grassroots support for US government health and development investments toward global child health goals. Additionally, in 2012, the AAP journal, Pediatrics, launched a regular “Pediatrics Perspectives” column on global health in rotation with other columns on medical history, graduate medical education, and medical student education.

Global Health Training and Faculty Development Over the past decade or so, along with the growth of AAP global health activities, many individual training programs also underwent expansion of their involvement in global health. This reflected a greater interest and involvement in global health by trainees, as nearly 60% of trainees reported an interest in global health sufficient to drive their selection of training programs in 2011.7 Additionally, residents with more cross-cultural experiences during residency reported being better prepared to care for diverse populations of US children.8 And, inevitably, this cohort of learner has further tracked into academic and community practice as a generation of young physician leaders who grew up aware of and actively participating in global and local citizenship and learning opportunities. In 1995, 25% of pediatric training programs offered international experiences; this increased to 52% in 2006 and 58% in 2015.9 Additionally, the number of programs with dedicated global health tracks grew from 0.4% to 6% to 25%, respectively, over that period.10 This growth helped lead to the Global Health Pediatric Education Group of the Association of Pediatric Program Directors (APPD), which was founded in 2010 by APPD and AAP SOICH leaders to provide national collaboration among leaders in global health practice. The Global Health Pediatric Education Group has provided a forum for abstracts and presentations on global education at the APPD meetings since 2015 and has worked to develop standards for pretravel preparation, responsible practice, and other curricular activities.10 Many leaders in these overlapping groups have helped focus attention on model curricula for trainees.11 Amid growing recognition that faculty careers can and should integrate global health into academic scholarship, several overlapping groups of US global pediatric educators also have helped set the agenda for the Academic Pediatric Association Global Health Special Interest Group and for the Global Health Task Force of the American Board of Pediatrics (ABP). The task force has focused on development of standards for training and assessment, global health competencies, and, increasingly, guidelines for professionalism.12 This focus on ethical and responsible education and practice was also identified by the AAP Board of Directors in

PGCH_ch21_381-390.indd 387

8/20/18 8:25 AM

388 Part 4: Models for Global Health Research

2016 in aligning AAP global health efforts toward continued support of accountability and sustainability in engagement with pediatric leaders and care for populations by frontline health workers. The focus on educational programs and competencies also led to development of Global Health in Pediatric Education: An Implementation Guide for Program Directors under the leadership of the ABP Global Health Task Force Trainee Workgroup, in collaboration with the APPD Global Health Educator Community, the AAP SOICH, and the ABP Education and Training Committee.13

Gaps, Environmental Scan, and Organizational Perspective of the Future of the Health of Children Globally The launch of the Sustainable Development Goals (SDGs) by the United Nations for 2015 to 2030 provides an overall framework for all countries to address disparities for their populations; goal #3, “Ensure healthy lives and promote well-being for all at all ages,” and its targets and indicators provide a rights-based framework for accountability with regard to national investments in child and adolescent health service and practice.14 However, the translation of these goals, despite country commitments, remains relatively removed from commitments to improving pediatric training and services. Additionally, the sustainability of AAP and other organizational investments in pediatric global health education and research capacity remains challenging. While the US government was actively engaged in development and launch of the SDGs, ongoing US commitment to their implementation and to health and development assistance priorities and to support for health and health care service improvement remains uncertain.15 Nonetheless, within the world of pediatric training, it is encouraging that global practice is increasingly well integrated into US training programs and that specific competencies needed for practice by all pediatricians, as well as those needed for trainees or faculty spending time abroad for short- or long-term involvement, are increasingly recognized. The sustainability of these efforts in individual training programs will be strengthened by increased scholarship in global pediatric education, as well as continued integration of global research initiatives with clinical training and service programs. Despite many other priorities, our trainees need these commitments toward their future careers, and the world’s children need no less to achieve health and well-being for children and youth in every country.

References 1. Blendon RJ, Benson J, Donelan K, et al. Who has the best health care system? A second look. Health Aff (Millwood). 1995;14(4):220–230 2. National Institutes of Health Fogarty International Center. History of the Fogarty International

PGCH_ch21_381-390.indd 388

8/20/18 8:25 AM

389 Chapter 21: Developing the Agenda for Global Child Health at the American Academy of Pediatrics

Center. https://www.fic.nih.gov/About/Pages/History.aspx. Accessed June 26, 2018 3. Haggerty RJ, Lovejoy FH Jr. Charles A. Janeway: Pediatrician to the World’s Children. Cambridge, MA: Harvard University Press; 2007 4. Hill LF. The American Academy of Pediatrics—its growth and development. Pediatrics. 1948;1(1):1–7 5. In memoriam. Paul Francis Wehrle. Professor of Pediatrics, Emeritus. Irvine. 1921–2004. http:// senate.universityofcalifornia.edu/_files/inmemoriam/html/PaulFrancisWehrle.htm. Accessed June 26, 2018 6. American Academy of Pediatrics Pediatric History Center. Oral History Project. Robert J. Haggerty, MD. https://www.aap.org/en-us/about-the-aap/Pediatric-History-Center/ Documents/Haggerty.pdf. Recorded September 30, 1998. Accessed June 26, 2018 7. Anspacher M, Frintner MP, Denno D, et al. Global health education for pediatric residents: a national survey. Pediatrics. 2011;128(4):e959–e965 8. Frintner MP, Mendoza FS, Dreyer BP, Cull WL, Laraque D. Resident cross-cultural training, satisfaction, and preparedness. Acad Pediatr. 2013;13(1):65–71 9. Butteris SM, Schubert CJ, Batra M, et al. Global health education in US pediatric residency programs. Pediatrics. 2015;136(3):458–465 10. Butteris S, St Clair N. Global Health Pediatric Education Group Annual Meeting. APPD 2015 Spring Meeting. Orlando, FL. https://www.appd.org/meetings/2015SpringPresentations/ PEGGlobalHealthSlides.pdf. Accessed June 26, 2018 11. Suchdev PS, Shah A, Derby KS, et al. A proposed model curriculum in global child health for pediatric residents. Acad Pediatr. 2012;12(3):229–237 12. Nichols DG. “Global health” is “health.” American Board of Pediatrics Blog. https://www.abp.org/ news/nichols-blog-global-health-health?page=3. Accessed June 26, 2018 13. St Clair N, ed. Global Health in Pediatric Education: An Implementation Guide for Program Directors. Chapel Hill, NC: American Board of Pediatrics; in press. https://www.abp.org/sites/abp/ files/pdf/globalhealthinpediatriceducationimplementationguideforprogramdirectors.pdf. Accessed July 18, 2018 14. United Nations. Sustainable Development Goal 3. https://sustainabledevelopment.un.org/sdg3. Accessed June 26, 2018 15. O’Neill WG. Trump and the United Nations. Items: Insights from the Social Sciences. http://items. ssrc.org/trump-and-the-united-nations. Published December 6, 2016. Accessed June 26, 2018

PGCH_ch21_381-390.indd 389

8/20/18 8:25 AM

PGCH_ch21_381-390.indd 390

8/20/18 8:25 AM

391

CHAPTER 22

Global Health Research: Role of Specialty Care Yaddanapudi Ravindranath, MBBS

abstract Hematology/oncology is a discipline that includes the study and treatment of diseases of the blood and tumors (benign and malignant) affecting the blood and body tissues. Because the diagnosis of blood diseases and cancer requires microscopic examination, traditionally, the specialty evolved as a part of the pathology discipline. As knowledge progressed, it became evident that many blood diseases and cancer have biochemical/ molecular underpinnings, and hematology/oncology came to be recognized as a laboratory medicine specialty. Herein lies the complexity of learning the biology of diseases included, as well in developing the strategies for management of each of the disorders encountered. In this chapter, a personal account augments the description of the status of chronic diseases represented in hematology/oncology in high-, medium-, and low-income countries. This approach allows for exploration of the essential elements of learning the diseases included. Also described are lessons learned of the strategies used in developing the resources needed to set up a high-level hematology/oncology program anywhere in the world. Many of the principles discussed apply to other specialty disease groups, notably immunology/rheumatoid diseases; inborn errors of metabolism, growth, and development; and congenital/ inherited disorders affecting virtually every organ in the body.

PGCH_ch22_391-412.indd 391

8/20/18 8:27 AM

392 Part 4: Models for Global Health Research

OPERATING PRINCIPLES INCLUDED (SEE PART 1.) 1. Population/epidemiology (population-specific and local data) 2. Persistence (genuine advocacy) 3. Partnership (respectful, bidirectional modalities) Competencies Addressed: R1, R2, R3, R4 See Chapter 8, Global Health Research Competencies.

Key References Global Burden of Disease Cancer Collaboration; Fitzmaurice C, Allen C, Barber RM, et al. Global, regional, and national cancer incidence, mortality, years of life lost, years lived with disability, and disability-adjusted life-years for 32 cancer groups, 1990 to 2015: a systematic analysis for the Global Burden of Disease Study. JAMA Oncol. 2017;3(4): 524–548 Eniu AE, Martei YM, Trimble EL, Shulman LN. Cancer care and control as a human right: recognizing global oncology as an academic field. Am Soc Clin Oncol Educ Book. 2017;37:409–415 Denburg AE, Knaul FM, Atun R, Frazier LA, Barr RD. Beyond the bench and the bedside: economic and health systems dimensions of global childhood cancer outcomes. Pediatr Blood Cancer. 2014;61(3):572–576

Teaching Points 1 Blood diseases and cancer often have a biochemical or molecular basis. 2 Understanding of hematology/oncology disease requires a working knowl-

edge of biochemistry, immunology, genetics, pharmacology, blood banking, infectious diseases, epidemiology, and molecular processes.

3 Clinical care and research are often closely linked; uncovering the molecular

basis of a disease may lead to the development of targeted therapy and genetic engineering to ameliorate the disease.

4 Improved mortality rates among children with cancer have been achieved through scientific discovery and collaborative clinical trials in different populations.

5 Development of resources needed requires learning about advocacy for the

patient and program needs with local (hospital), state, and federal authorities and institutions.

6 Partnerships with patients, parents, and families are a vital element in organizing care and philanthropic support for clinical/translational research.

PGCH_ch22_391-412.indd 392

8/20/18 8:27 AM

393 Chapter 22: Global Health Research: Role of Specialty Care

History/Context and a Personal Perspective The 5 Ws (and 1 H) were memorialized by Rudyard Kipling in his Just So Stories (1902), in which a poem accompanying the tale of “The Elephant’s Child” opens with I keep six honest serving-men (They taught me all I knew); Their names are What and Why and When And How and Where and Who. In the opening chapter of the preeminent textbook of pediatric hematology, Nathan and Oski’s Hematology of Infancy and Childhood, Dr Wolf W. Zuelzer, my mentor, wrote, “As a subspecialty of pediatrics and a sine qua non of the modern teaching institution, pediatric hematology is a latecomer, naturally enough, for diseases of the blood were a minor problem—one is tempted to say a mere hobby of a few inquisitive and farseeing minds— compared with the great challenges of infections and nutritional disorders that faced the pioneers of pediatrics….Its tools as well as its basic concepts came largely from internal medicine and from the experimental sciences, and one needs only to mention such names as Ehrlich, Metchinkoff, Landsteiner, Chauffard, Downey, Minot, Castle, ­Whipple and Wintrobe to appreciate the magnitude of this debt.”1 All of these scientists, save for Ehrlich, were foreign to this author during the study of medicine in the early 1960s in Hyderabad, India. My own first notion of going into hematology/oncology were influenced not by the patients I saw during my medical school years, nor by any specific mentor in the medical college. I did have dedicated teachers and scholars who inspired me and taught me fundamental principles of self-learning. The lesson that forever changed my approach to learning was a welcome lecture to new medical students at my alma mater, Gandhi Medical College, by Professor B.S. Surti, then head of obstetrics and gynecology; he paraphrased Kipling: “I learnt what I know from 6 professors: who, what, why, how, when, and where.” Answering these questions with every clinical problem I ever saw taught me all I know today. Along the way, there were some critical invited lecturers and publicly sponsored symposia that had a profound influence on me and steered me toward hematology/oncology. The first was a mock clinical-pathological conference by a visiting professor from Johns Hopkins; the woman had 3 different malignancies but also had a large number of café au lait spots indicating underlying neurofibromatosis type 1, now a well-known cancer predisposition syndrome.2 Soon thereafter, I attended a general public informational symposium in the city (Hyderabad) in 1964 with Sir Francis

PGCH_ch22_391-412.indd 393

8/20/18 8:27 AM

394 Part 4: Models for Global Health Research

Crick, of the Watson-Crick model of DNA; Professor Charles H ­ eidelberger, who synthesized the first anti-DNA drug, 5-fluorouracil; and Sir Peter Medawar, who had won the Nobel Prize for the self/non-self theory of immunity. The die was cast, and my choice of going into hematology/oncology was sealed when taking care of a 5-year-old with severe aplastic anemia at the Children’s Hospital of ­Pittsburgh. I was very much intrigued by the concept of pluripotent stem cells. I thought hematology/oncology would be a good specialty to focus on, as all I would need to practice it would be a microscope. I had this simplistic notion that being an expert morphologist would allow me to solve all diagnostic dilemmas. At that time, I did not realize that I would only address the “what” by looking at the cells; that is, looking would not solve the other Ws (and H) regardless of how long I peered at the cells. The art of learning hematology/oncology is still at this stage in many middle- and low-income countries. Moreover, in my experience, most trainees in the United States desire to go directly from “what” to intervention. It is from this perspective that I will describe the evolution of pediatric hematology/oncology as a discipline in the United States and what changes are needed in low- and middle-income countries to advance the field and improve the care of children with cancer and blood diseases in these countries.

Improving Patient Care Requires Concurrent Commitment to Clinical/Translational Research

Perspective of High-Income Countries A fundamental difference in the academic hospital systems in the United States and low- and middle-income countries is the linkage with university medical schools with highly integrated research foci or hospital-based research centers in the former, and the absence thereof in much of the latter. Technological advancements require acquisition of new knowledge; achieving new knowledge is highly dependent on industrial power and wealth. Today, to varying degrees, wealthy individuals, institutions, and governments reinvest newfound wealth to acquire more knowledge and, thus, perpetuate the knowledge cycle. However, this pattern of reinvestment in research is relatively new. In medieval times, Galileo was ostracized for his research efforts; indeed, the church appeared to be suspicious of research. The nations and institutions that recognized this linkage of clinical care with research advanced the field and became the leading medical centers in the world. Therein lies an important element in developing a particular discipline in medicine—advocacy for improving patient care through scientific discovery and devising new strategies for currently incurable diseases (many diseases in the hematology/oncology discipline fall in to the latter category). Laboratory innovations are critical for accurate diagnosis and the linked treatments. This is especially so for blood diseases, which are caused by biochemical/molecular aberrations or acquired because of immunologic aberrations. Anatomical imaging systems, such as x-ray imaging, ultrasound, computerized tomography scans, magnetic resonance imaging, nuclear medicine imaging (scintigraphy), and positron emission tomography, all have contributed immensely to the understanding

PGCH_ch22_391-412.indd 394

8/20/18 8:27 AM

395 Chapter 22: Global Health Research: Role of Specialty Care

of many solid organ–based systems, but blood, being a liquid organ composed of free floating blood corpuscles and liquid plasma, is not susceptible to imaging by the same technologies. Diagnosis and treatment require examination of plasma (for disorders of hemostasis—bleeding and thrombosis) or serum for anemias caused by nutritional deficiencies (iron, folic acid, and vitamin B12), blood banking for immune (isoimmune, alloimmune, or autoimmune) mediated hemolytic anemias, biochemical or molecular characterization of blood corpuscles for congenital cytopenias, and biomarker (surface, cellular, genetic [chromosomal/ molecular]) characterization of leukemias and marrow failure syndromes. Thus, a unique system of blood imaging is necessary beyond morphologic evaluation of the blood itself. Thomas Cooley, working at Children’s Hospital of Michigan, Detroit, described thalassemia major in 1925,3 and John Herrick from Chicago described sickle cells in a dental student from Jamaica in 1910.4 But it was not until William Castle from Boston persuaded Linus Pauling during a chance train journey in 1945 (after a meeting in Denver) to evaluate possible protein polymerization in sickle red cells that the field of hemoglobinopathy was born (for details of this story, see the chapter on sickle cell anemia in Hemoglobin: Molecular, Genetic and Clinical Aspects by Bunn and Forget).5 Subsequently, in 1949, using the protein electrophoresis system developed by Tiselius, Pauling et al demonstrated that sickle trait individuals had 2 types of hemoglobin, normal and sickle.6 Studies with hemoglobin electrophoresis eventually proved that sickle cell disease and thalassemia are disorders of hemoglobin, the former a structural variant and the latter a defect in hemoglobin synthesis. The story of discovery of glucose-6phosphate dehydrogenase (G6PD) deficiency is equally fascinating. Blackwater fever was long known to affect males in Africa, but it was not until African American soldiers were exposed to primaquine for malaria protection that genetic predisposition was suspected; Dr Zuelzer and colleagues at Children’s Hospital of Michigan, Detroit, described an acute hemolytic anemia occurring in African American children after exposure to naphthalene-containing mothballs.7 In both groups of patients, the onset of anemia was sudden, there was concurrent jaundice, and, in the case of mothball anemia, there was a unique red cell morphology suggesting hemoglobin condensation. Spontaneous recovery occurred in most with normalization of red cell morphology. A susceptibility to oxidant damage was proposed and proven by the Army research unit (which included Ernest Beutler) at the University of Chicago by the demonstration of reduced glutathione synthesis on oxidant exposure caused by the deficiency of G6PD.8 The occurrence primarily in males suggested X-linked inheritance, with males being homozygotes and mothers being heterozygotes. Eventually, studies in female carriers of G6PD deficiency provided evidence of random inactivation of X chromosomes in females, thus proving the Lyon hypothesis. Astute clinical observations that ABO incompatibility protected against Rh sensitization eventually lead to the use of high-dose Rh antibody (RhoGAM) in the prevention of Rh sensitization.9 A mistaken notion that folic acid supported the growth of leukemic cells led Sidney Farber, a pathologist at Boston Children’s Hospital, to the hypothesis that antifolates may be effective in treating leukemia. At Dr Farber’s request,

PGCH_ch22_391-412.indd 395

8/20/18 8:27 AM

396 Part 4: Models for Global Health Research

Dr Yellapragada Subbarow at Lederle Laboratories synthesized first aminopterin and then amethopterin (methotrexate), both effective in inducing remissions in children with leukemia, and, thus, began the modern era of cancer chemotherapy. (Inexplicably, Dr Farber did not include Dr Subbarow as an author in the famous publication.)10 Methotrexate remains a mainstay of therapy of childhood acute lymphoblastic leukemia (ALL) today. Advances in immunology in the late 1950s and early 1960s led to the recognition of the 2-compartment immune system, the humoral antibody producing B cells and the T cells responsible for cell-mediated immunity. Using the original T-cell marker, spontaneous erythrocyte rosetting test with sheep erythrocytes (developed by JF Bach in 1970), 3 groups of investigators (including our group at Children’s Hospital of Michigan, Detroit) independently identified that blast cells of children with ALL who have an enlarged thymus were T cells in origin. Subsequently, using crude polyclonal antibodies specific for T and B lineage antibodies, Kaplan, Ravindranath, and Peterson from Detroit showed the all child ALL cases were either of B or T lineage in origin, thereby ushering in the modern age of immunophenotyping of leukemias.11 Thus, a modern hematology/oncology specialist should have sufficient knowledge of genetics, immunology and blood banking, biochemistry, and pharmacology (of antineoplastic drugs) to practice his or her discipline. It is interesting that my own career began that way—hearing of a genetic cancer predisposition syndrome, molecular underpinnings of DNA, a designer drug to disrupt DNA synthesis, and basics in immunology from the pioneers in the field—all occurring randomly and concurrently. I was fortunate to have entered the field just as it was exploding with new knowledge. During my early years as a young faculty, I had the good fortune to listen to Linus Pauling at an all-day symposium on sickle cell disease at Wayne State University and hear talks by Vernon Ingram (who identified the b6 glutamic acid to valine mutation of the beta globin chain of sickle hemoglobin) and Max Perutz (who won a Nobel Prize for determining the crystal structure of hemoglobin). I attended immunology symposia that included Robert Good, Max Cooper, Jean-François Bach, and David Gitlin—all legends in the field. I learned the art of writing manuscripts with Dr Wolf Zuelzer, Ernest ­Beutler, and Donald Paglia, all pioneers in hematology/oncology. I proceeded to learn what I needed along the way; no amount of structured learning could have prepared me for what I would need to know over time. That is not to say that structured learning is not needed. Some course work is common to all specialties; basics in statistics, epidemiology, database development, pharmacokinetics, and pharmacodynamics are some examples best taught in classroom sessions accessible to all trainees. The basics in knowledge keep changing, and structured learning will have to be supplemented by ongoing self-education of new elements specific to each specialty. Structured learning, as it is practiced today in the training programs in the United States, is often overly focused on passing board examinations and, therefore, can be limiting. It may prevent a trainee from benefiting from random acquisition of scientific knowledge from lectures in other disciplines that could affect problem-solving much later. I prefer the high jumper/ pole-vaulter frame of mind—keep pushing the bar higher or even invent new

PGCH_ch22_391-412.indd 396

8/20/18 8:27 AM

397 Chapter 22: Global Health Research: Role of Specialty Care

styles to scale new heights, like Dick Fosbury of Fosbury flop fame (crossing the high jump bar with the back facing the bar). All body cells have the same genetic material and differ only by selective expression or silencing of certain genes. Activating somatic mutations of the NOTCH1 gene occur frequently in T-ALL, while germline hypofunction of single nucleotide variations (SNVs) are linked to congenital heart disease.12,13 Another striking example is the gene BCL11A, a gamma globulin repressor that regulates the switch from gamma globulin in fetal life to b-globulin in postnatal life. Recently, BCL11A deletions were linked to neurodevelopmental disorders.14 Thus, the approaches used in basic pediatric training may not be applicable to subspecialty training. In basic pediatrics, a resident is rotating through various subspecialties and, in time, covers all specialties. On the other hand, in subspecialty clinics, a trainee may see, in the same session, various types of cancer and blood diseases; the trainee must learn about various complex diseases at the same time. Thus, case-based learning (reading) is a much bigger component of subspecialty training. While this approach may seem less organized, it mirrors what happens in clinical practice. Today’s trainees entering hematology/oncology face a daunting task because of the rapid advances in the field over the last 5 decades. Gone are the days when one learned the essentials at the feet of teachers; the apprentice model is replaced by structured learning with defined curricula. In the 1950s and 1960s, when the field of pediatric hematology/oncology was emerging, it was possible to learn the art from a few pioneering mentors. The success in curing childhood leukemia and cancer and the development of coagulation factor replacement therapy for hemophilia, penicillin prophylaxis for sickle cell anemia, chelation therapy in thalassemia, and the emerging new field of marrow/stem cell transplantation changed the field dramatically. The field is broad enough that in adult medicine, there are 4 basic subdivisions: 1) benign (non-malignant hematology); 2) malignant hematology, including solid tumors of the lymphoid system; 3) oncology (tumors of solid organs); and 4) hematopoietic stem cell transplantation. Patient caseloads are such that this is feasible in adult hematology/oncology, and many programs are organized as such, with little crossover between hematology (benign/non-­ malignant), oncology, and hematopoietic stem cell transplantation programs. Furthermore, separate board certification systems exist for adult hematology and oncology. The practice in pediatrics is varied in Europe, the United Kingdom, and the United States. In Europe, the division is more like in adults, and hematology (including hematologic malignancies) and oncology programs are separate. In the United States and most institutions in the United Kingdom, the 2 programs are merged in a single operational unit/division, albeit with faculty focusing on one or the other subdisciplines, except in some large centers (eg, Memorial Sloan Kettering Cancer Center in New York, NY, or MD Anderson Cancer Institute in Houston, TX). There is a single subspecialty certification process with a required minimum of 3 years of training in clinical and research experience. The subspecialty certification process varies in the United Kingdom and Europe. In the

PGCH_ch22_391-412.indd 397

8/20/18 8:27 AM

398 Part 4: Models for Global Health Research

United Kingdom, the trainee works in a hematology/oncology unit for several years as a registrar, may have some research time, and then takes a membership examination offered by the Royal College of Physicians. On the continent, the programs vary considerably, from several years of apprenticeship in a ­hematology/ oncology unit as faculty member to the most formal of all in the Netherlands. In the Netherlands, those who wish to pursue an academic subspecialty career enter into a 4-year PhD biology program after completion of basic pediatric training (eg, medicine, surgery), and then do a 2-year clinical training. Thus, by the end of the training period, their research experience and prowess are at an advanced level, with many conducting independent research (often in a common cancer center core laboratory). The Netherlands does offer a 2-year training program solely for staffing clinical subspecialty units. Many European countries offer a subspecialty competency certification examination. The responsibility for learning lies predominantly with the candidate, as, in this author’s opinion, it should. Self-motivation is the best of all teachers. In any case, any formal training can only provide basics; acquisition of new knowledge and new tools is the student’s responsibility. Because knowledge evolves continuously, one is a student forever and, thus, must maintain a learning attitude throughout one’s career. As Stephen Feig, a former colleague from the University of California, Los Angeles, once said, “Fellowship training is not supposed to deliver a finished product” (personal communication). Basic scientists (typically PhDs) frequently spend several years in an advanced laboratory as postdoctoral assistants before they become independent investigators. New faculty members coming fresh out of fellowship often require 2 to 3 years of supervised on-the-job apprenticeship to become competent specialists.

Perspective of Low- and Middle-Income Countries The basic approach to subspecialty training is similar to that described previously for high-income countries. However, the training is often more “complete” in high-income countries in that a laboratory research component is typically provided, be it as a part of the course curriculum or by self-motivation. Laboratory research forces organized learning of underlying biologic processes and the methodologic details of laboratory testing needed to solve clinical problems. The juxtaposition of research facilities, be they be at an affiliated medical school or an attached research center, is crucial in this process. Translation of scientific progress for improving diagnosis and treatment ignites societal response in the form of philanthropic support, and the cycle continues. It is this aspect that separates facilities in low- and middle-income countries from those in Europe and North America and medical schools modeled in a similar fashion elsewhere, notably in Japan. Faculty in preclinical disciplines (eg, anatomy, biochemistry, pharmacology, physiology, pathology, immunology) are expected to do research and support their salaries through grants; many clinical departments also have faculty with significant research focuses and hospitals have attached research facilities. A similar pattern has evolved in European-based cultures in Israel, Australia, New Zealand, and parts of South America, notably Argentina and Brazil. Such integration of basic and translation research at medical schools is highly variable in other

PGCH_ch22_391-412.indd 398

8/20/18 8:27 AM

399 Chapter 22: Global Health Research: Role of Specialty Care

parts of the world; exceptions include Turkey in the Middle East and Japan, Hong Kong, Taiwan, and Singapore in Asia and Africa. The economic boom in China has resulted in increased investment in research and training and development of an integrated medical school–hospital system much like in the United States. In India, medical research (basic and translational) is largely concentrated in specialized research centers with limited direct contact with medical schools; consequently, there is minimal exposure to laboratory research at the medical school or subspecialty trainee level. In such settings, it is imperative that program directors seek out regional research centers to establish mutually beneficial research collaborative studies. How, then, does one train oneself in low-resource settings? A major purpose of medical research is to explain variances observed in clinical findings—disease manifestations, clinical severity of diseases, and variances in responses (ie, cure, risk for disease progression, side effects from treatment and death). Our understanding of the many aspects of cancer and blood diseases we know today originally came from meticulously maintained clinical observations. What is learned from textbooks and review articles should be supplemented with selected reading of some cross-references included in the chapter and review articles to help understand how the authors thought of a particular idea to begin with. Such extended reading reinforces the logic of the observations and conclusions. To the extent possible, the trainee should attend smaller, focused research conferences on select topics in the field based on the population of patients served. Always, the trainee should supplement what is learned from books and journals with his or her personal clinical experience. Local experiences in low- and middle-income countries can uncover or explain variances observed (or not observed) in European societies. Geographic variances occur in the incidence of certain cancers and blood diseases based on ethnicity and polymorphic differences. Ewing sarcoma is rare in sub-Saharan African populations and neuroblastoma is uncommon in Andean Indians; what is protective for these cancers in these populations? Sickle cell disease is milder in certain segments of Indo-Arab populations. Von ­Willebrand disease, the most common bleeding disorder in the white population, is rare in sub-Saharan Africa. It is important to recognize that research does not always mean bench laboratory research. In childhood cancer, low cure rates are the result of lack of access to therapy, nonadherence (abandonment of therapy), treatment-related morbidity (TRM), or disease resistance to prescribed treatment.15,16 Clinical research involves identifying which of these are main factors in a given setting and working toward resolving these issues. Resolving access to care is a health system problem that affects care given by the oncologist. By contrast, selection of treatment strategies for a given cancer (disease), reducing the TRM, and identifying causes of noncompliance are the responsibility of the treating physician. It is important for an oncologist to modify chemotherapy protocols to fit local conditions. A basic knowledge of pharmacokinetics, pharmacodynamics, and pharmaco­ genomics is essential to understand the basis for the design of chemotherapy regimens.15 A big part of the success of cancer therapy is in learning how to manage a patient through the entirety of the treatment. Fortunately, there are many equally

PGCH_ch22_391-412.indd 399

8/20/18 8:27 AM

400 Part 4: Models for Global Health Research

successful therapeutic regimens available from which to choose. An understanding of the evolution of these protocols is helpful.10 Familiarity with a given protocol is essential. For treatment of precursor B-cell ALL, the most common and most curable childhood malignancy, an oncologist has multiple equally beneficial regimens to choose from—protocols by Children’s Oncology Group (COG); Pediatric Oncology Group (POG, now merged with COG); St. Jude Research Hospital Dana-Farber Cancer Institute (DFCI); Berlin, Frankfurt, Muenster (BFM) group; United Kingdom ALL studies (UKALL); and the studies from Nordic Pediatric Hematology/Oncology (NOPHO), to name a few.16 The COG and BFM studies are similar and use the concepts of multi-agent intensive consolidation, often associated with significant neutropenia; DFCI protocols use intensive asparaginase for consolidation and are associated with significant suppression of protein synthesis, which aggravates the already marginal nutritional status of children in low- and middle-income countries; and the high-dose methotrexate-based regimens of the previous POG and current NOPHO regimens, while being mostly non-­ myelosuppressive, require therapeutic drug monitoring to prevent acute and chronic renal toxicity. Thus, it is important that each program or group picks a protocol that is best suited for the local conditions and treats several patients on the same regimen. For example, in large studies of childhood ALL from COG/ BFM and UKALL groups, use of dexamethasone versus prednisone resulted in lower rates of central nervous system relapse; however, this was offset by increased numbers of deaths from infection. In settings where deaths from TRM are already at a high level, there could be additional risk from using dexamethasone.17 In Europe and North America, in childhood ALL with aggressive supportive care, the risk of death from infection or bleeding is about 1%, and post-induction deaths from TRM are reduced to 1% to 2% levels. In low- and middle-income countries, up to 20% of the children die during induction therapy and from TRM post-remission.18 Therefore, the use of dexamethasone could increase the already high level of TRM. This was rapidly recognized, and in many low- and middle-­ income countries, pediatric oncologists switched back to prednisone. The primary cause of abandonment of therapy is poverty, aggravated by the additional out-ofpocket costs from wages lost from taking time off from work, traveling to a distant cancer center, as well as costs of managing TRM. Seeing deaths from TRM in fellow patients may have an adverse effect on the commitment to follow through with therapy. Thus, at least for the present, selection of a protocol with low TRM may be preferable and result in higher population-based cure rates because of low TRM than high-intensity treatments. On the other hand, ingenious treatment strategies shaped in low-income countries have had revolutionary effects on treatment of certain cancers. The use of arsenic trioxide (ATO) for acute myeloid leukemia began in China and was developed in India as a single-agent therapy for acute promyelocytic leukemia (APML) and as a low-cost alternative to the use of all-trans-retinoic acid.19 Now all-trans-retinoic acid/ATO-based therapy (without additional conventional cytotoxic drugs) is the standard therapy for APML. Similar novel approaches were developed for support during surgery for patients with hemophilia A; a low-dose

PGCH_ch22_391-412.indd 400

8/20/18 8:27 AM

401 Chapter 22: Global Health Research: Role of Specialty Care

factor VIII supplementation strategy proved to be effective for most surgeries.20 Thus, subspecialists in low- and middle-income countries can contribute to advancement of knowledge through national studies, as well as international collaborations. It is important to recognize that sharing knowledge is bidirectional. Furthermore, because of population sizes, advances in therapeutic interventions for rare childhood cancers will come from worldwide collaborative studies in low- and middle-income countries.

Current Best Practices

Perspective of the United States and Other High-Income Countries Over the years, a multidisciplinary care model has evolved for care of children with blood diseases and cancer. Other than nutritional anemias, most blood diseases have a genetic or immunologic basis and tend to be chronic diseases requiring long-term commitment from the care team to oversee a multitude of short- and long-term problems. The issues faced by the patient may be directly caused by the underlying disease, the requirement of ongoing treatment, the complications of the treatment, and the psychosocial stress caused by the disease itself and its effect on education, lifestyle, and employment. Hence, the staff in an ideal hematology/ oncology clinic should include the specialist physician, trained mid-level health care professionals (eg, nurse practitioners, physician assistants), nurses knowledgeable in administration of chemotherapy and necessary blood product support, dedicated social workers, trained pharmacists, psychologists, nutritionists, clinical research associates, phlebotomists, nurse (medical) assistants, and other office and administrative personnel. While the hematology/oncology specialist physician is the leader, input from a multitude of physicians from various disciplines is needed for diagnosis and treatment—surgery, radiation, oncology, pathology, cytogenetics, flow cytometry, imaging, nuclear medicine, infectious diseases, endocrinology, nephrology, cardiology, neurology, molecular genetics, and others. Multidisciplinary team meetings are necessary to share information, resolve conflicts in diagnosis, and plan treatment. It goes without saying that this multidisciplinary organization of hematology/oncology programs evolved over time as advances occurred in the understanding of the biology of disease and the availability of newer treatment interventions. Another important element in improving cure rates and outcome is the development of collaborative clinical trial networks (CTNs). The effect of CTNs is best illustrated by the success achieved in treatments of childhood leukemias and cancer.18 This approach was necessary for improving both the understanding of the biology of the diseases and the clinical outcome. It was rapidly recognized that no single institution had sufficient numbers of patients or laboratory resources to discover the important clinical and biomarker variables to define risk for failure and adjust the treatment accordingly. Treatment was offered according to a defined plan: the so-called protocol-based therapy. As cure rates improved, new treatment-related complications were recognized that necessitated additional

PGCH_ch22_391-412.indd 401

8/20/18 8:27 AM

402 Part 4: Models for Global Health Research

adjustments. Statistical validation of the biomarkers for risk definition and effectiveness of treatment modification needed larger and larger numbers of patients. The net result is that today, a childhood cancer patient is treated on multi-­ institutional CTN-based protocols; biomarker (immunophenotyping; cytoge­ netics, including fluorescence in situ hybridization and molecular markers such as copy number variations; disease-causing mutations [SNVs, insertions, deletions]; fusion proteins from gene translocations and epigenetic alterations in the genome) evaluation is standardized and often centrally reviewed for patients in CTN-based studies. Treatment results are continuously monitored. The CTN model developed by cancer specialists (oncologists) has now been adopted in many disciplines (eg, neonatology, nephrology and hypertension, critical care, cystic fibrosis) but does not cover all diseases as comprehensively as the networks in pediatric oncology. In the United States, a hybrid model of National Institutes of Health (NIH)-funded centers and CTNs have evolved for hemostatic disorders (hemophilia, thrombosis) and sickle cell diseases. Preventive strategies to reduce morbidity exist for sickle cell disease and other hemoglobinopathies; children identified to have sickle cell disease, b-thalassemia major, and hemoglobin H disease through nationally mandated newborn genetic disease screening programs are referred to regional sickle cell/hemoglobinopathy programs in each state. Thus, the child has access to care from birth onward at a center dedicated to managing and treating his or her disease. Today, a hematologist/oncologist in a high-income country has access to varied diagnostic and treatment options for any child with cancer or blood disease. A nationally mandated newborn screening program also exists for several metabolic diseases, cystic fibrosis, and immunodeficiency disorders. The costs for testing and treatment are covered by insurance or governmental programs, supplemented by grants from disease-­ specific societies and foundations. For childhood cancer and most common inherited blood diseases, protocolbased therapy has become the standard of care. A child is evaluated for accurate diagnosis, risk definition, and risk-based therapy assignment. Treatment results are monitored, especially for those children on cooperative clinical trials, and the trial is terminated as needed by unacceptable toxicity or clear differences in the experimental versus standard arm. Therefore, in general, there is greater patient safety in protocol-based therapy than with random physician choice. Benefits of protocol-based therapy include access to consensus-based therapy options and new testing for biomarker variability and the ability to track for immediate and late effects. In effect, the patient gets the benefit of input from experts in the field. The net result is increased cure rates with elimination of unnecessary treatment: stage 1 Wilms tumor is cured with surgery plus 6 weeks of therapy without radiation; cranial radiation is no longer used for central nervous system prophylaxis in the treatment of childhood ALL; and chemo-reduction strategies have virtually eliminated the need for external beam radiation in the treatment of retinoblastoma and enucleation of both eyes in germline familial retinoblastoma. Similar results have been obtained in treatment of bleeding disorders—factor supplementation is virtually free of major viral illnesses that devastated the hemophilia

PGCH_ch22_391-412.indd 402

8/20/18 8:27 AM

403 Chapter 22: Global Health Research: Role of Specialty Care

community, and prophylactic factor administration has markedly reduced or even eliminated hemophilic arthropathy; penicillin prophylaxis and pneumococcal vaccine therapy have virtually eliminated deaths from bacterial sepsis in children with sickle cell disease, and hydroxyurea therapy has dramatically modified the frequency of painful vasoocclusive episodes; and chelation therapy has vastly improved life expectancy in thalassemia major, and population-wide genetic counseling has virtually eliminated the birth of newborns with thalassemia major in high-prevalence countries such as Greece and vast parts of Italy.

Perspective of Low- and Middle-Income Countries For pediatric hematologists/oncologists in low- and middle-income countries, starting a new program in the region or country presents unique challenges. While national programs may exist for cancer surveillance, funding for childhood cancer is not automatic. Even in the United States, funding for childhood cancer did not come easy. Funding improved only after the demonstration by Donald Pinkel and colleagues from St Jude Hospital (Memphis, TN) that childhood cancer is curable.21 Triggered by these successes in childhood cancer, President Richard Nixon declared war on cancer, and the NIH National Cancer Institute was entrusted with steering this task. Patient support groups played a critical role in raising the seed money to support clinical research, and the hospital systems responded by increasing programmatic support. In most low- and middle-income countries, a hybrid health care system has evolved—cash-strapped government hospitals for the low-income indigent populations and a private system for the wealthy that rivals any in high-income nations. These disparities are magnified in large countries like India, where the public and private hospital systems are separate. There is no trickle-down benefit from diagnostic laboratory services to the poor and indigent from well-equipped private institutions. The number of patients cared for in the government-run hospitals far exceeds those who can afford treatment at private facilities. Hence, while patients may receive treatment in ideal physical facilities in a private hospital, the disease expertise may be greater at the public facilities because of the sheer number of patients treated. Pediatric hematology/oncology patient care, in particular, is not susceptible to simple office practice; it is highly dependent on availability of various specialists in other disciplines, in addition to critical laboratory support and standard imaging modalities. It is important that hospital leadership appreciate this unique requirement of hematology/oncology clinics. The clinic staff must include dedicated hematology/oncology nurses, social workers, and a pharmacist trained in dispensing oncology drugs and clotting factors at a minimum. The clinic should also be supported by ready access to a hematology laboratory for performing blood cell counts and preparing blood and bone marrow smears in a timely fashion; a clinical chemistry laboratory for doing basic metabolic profiling, including electrolytes, blood urea nitrogen, creatinine, uric acid, and liver function tests; a coagulation laboratory; and blood bank services. Without such support, it is not possible to manage chemotherapy for cancer and leukemia patients and evaluate and treat patients with bleeding disorders or

PGCH_ch22_391-412.indd 403

8/20/18 8:27 AM

404 Part 4: Models for Global Health Research

transfusion-dependent anemias. Often, the facilities are meager and put a great strain on the health care staff as well as on parents. Treating physicians have shown great adaptability in managing the resources and minimizing the economic burden of families. For example, in India, most state governments offer a onetime allocation of a fixed amount for diagnosis and treatment of catastrophic illnesses. The physician then must decide how much money is spent on diagnostic testing and how much on treatment costs. Any excess costs are borne by the families. One strategy that pediatric oncologists in India have developed for a child with precursor B-cell ALL is to test for BCR/ABL fusion protein (for identifying Ph chromosome), as targeted treatment with imatinib is available for this chromosomal variant. For all others, risk definition is based on the classical age and initial white cell count. It turns out that this approach is not far off; recent studies from the COG and UKALL groups show that of all prognostic parameters after assessment for minimal residual disease, age of the child is the next best predictor, more significant than cytogenetics!22 It is not completely surprising that age is a good surrogate for biology in many childhood cancers; the so-called good-risk cytogenetic variants of childhood leukemia occur predominantly in children between the ages of 1 and 10 years.23,24 So, a pragmatic approach developed because of economic constraints is nearly as good as a scientifically based evaluation. Oncologists in low- and middle-income countries should take comfort in the fact that while awaiting availability of advanced diagnostics for all patients, much can be done by applying carefully developed clinical observations.

An Environmental Scan

Perspective of the United States and Other High-Income Countries The development of health care systems is complex and beyond the scope of this chapter. Developments in multiple spheres have contributed advancements in medicine. Identification of biomarkers of disease evolved from advances in various scientific disciplines, notably medicinal chemistry and physiology. Advances in physics lead to the imaging industry. The pharmaceutical industry evolved from ancient herbal medicine. The driving force in all of this is the creative genius of the human mind—an incessant urge to understand the human body and develop remedies for disease. Countries on the forefront of the industrial revolution advanced faster and developed more resources. Each discovery led to more discoveries. The wealth of nations increased, and with that, allocations for health care. As new diagnostic tools became available, the need for standardization was recognized, and new treatment modalities required systematic evaluation. An orderly system of standardization of tests was implemented across laboratories. Clinical trial systems were developed to understand the biology and treatment of disease. Financing these interventions developed differently across the Atlantic, based on beliefs in the free market versus beliefs that health care should be available to all regardless of family income. Even in the free market system of the United States, safety net programs (Medicaid for children and Medicare for adults) are in place to facilitate access for all children to diagnostic testing and

PGCH_ch22_391-412.indd 404

8/20/18 8:27 AM

405 Chapter 22: Global Health Research: Role of Specialty Care

treatment. Care of the rich and poor usually occurs in the same facility. Community involvement is at a high level, particularly in university-affiliated hospital systems. Hospital operations are supervised by a board of trustees composed of philanthropic donors, community representatives, hospital administrators, and medical staff. Such structures can help ensure that discrimination does not occur based on personal income, gender, or race/ethnicity. In Canada and most European nations, nationalized health systems exist and facilitate access to care. In North America, the United Kingdom, and Europe, medical research is promoted and supported by grants from national agencies, such as the NIH (with institutes for blood diseases and cancer16,25) in the United States, the Medical Research Council in the United Kingdom, and similar agencies in much of Europe. There is community and industry support for research through private foundations, such as the American Cancer Society, the Leukemia & Lymphoma Society, and St. Baldrick’s Foundation in the United States and Wellcome Trust in the United Kingdom. In addition, many universities and hospital systems finance their research operations through private donors. Thus, there is an array of resources to advance medical care in high-income countries. Nonetheless, health disparities do occur in high-income countries and must be addressed to provide equal access to quality and state-of-the-art hematology/oncology services for all children.26,27

Perspective of Low- and Middle-Income Countries Capacity building is a slow and complex process that is highly dependent on national wealth. Resources vary widely in low- and middle-income countries. Multiple factors contribute to this disparity, including low national gross domestic product, health care policies driven by a focus on disability-adjusted life years (DALYs), lack of realization that childhood cancer is highly curable, and lack of advocacy.24,25,28–30 Even in affluent societies, allocation of resources for childhood cancer is not automatic even to this day; childhood cancer accounts for 1% of the total cancer incidence in the United States, and governmental allocations (as well as community philanthropic support) for childhood cancer (and blood diseases) increased only after the demonstration of therapeutic success. The policy priorities of governments toward expenditure for children’s health in relation to the population distribution of children in the country is a measure of governmental priorities in addressing health care of children. The World Health Organization publishes lists of funding and childhood cancer cure rates across the world that parallel this allocation.31 Clinical outcomes are rapidly changing in low- and middle-income countries. In Argentina, Brazil, Chile, and Uruguay, the care of children with cancer is almost at the same level as in North America. Egypt has led the way in North Africa for many years, and other North African countries (except for Libya) have shown great progress through regional international collaboration, such as with the French African Group of Pediatric Oncology (FAPOG). As countries are becoming more affluent, safety net programs to cover treatment costs have been established, the most notable being the Programa Infantil Nacional de Drogas Antineoplásicas (PINDA, 1988) in Chile (by a national legislative act in 1988 [see

PGCH_ch22_391-412.indd 405

8/20/18 8:27 AM

406 Part 4: Models for Global Health Research

www.minsal.cl/programa-nacional-del-cancer]), which supports for care, including appropriate imaging/biomarker testing, is linked to enrollment on organized protocol-based therapy. Safety net programs similar to PINDA (although not necessarily linked to protocol-based therapy) exist in Mexico, many Latin American countries, and India, to name a few. These programs are mandated at a national level in smaller countries and operated at a state (province) level in larger countries, like India. Nevertheless, access to care is limited in large parts of India, Indonesia, Philippines, much of sub-Saharan Africa (except South Africa), and Central America (except Mexico and Costa Rica). Across the world, with decreasing deaths from communicable and other infectious diseases, deaths from leukemia and cancer are emerging as leading causes of death from disease in children. This, coupled with the realization that childhood cancer is highly curable, is increasing budgetary allocations for treating children with cancer. Simultaneously, there is an increased awareness in the community and greater sharing of information among patient support groups across nations. Thus, there is an ever-increasing collaboration among pediatric hematology/oncology specialists on the one hand and patient support groups on the other. The collaboration between the Manza group with Asociación de Hemato-­ Oncología Pediátrica de Centro América (AHOPCA) in Central America32; St. Jude outreach program in Latin America and other countries33; the Netherlands outreach in Indonesia34,35; Société Internationale D’Oncologie Pédiatrique (SIOP) India/Pediatric Oncology in Developing Countries (PODC) program29,36,37; the FAPOG program in North Africa38,39; the efforts of South Africa in Malawi and Cameroon37,40; and the efforts by the International Network for Cancer Treatment and Research (INCTR), Brussels, are great examples of the international efforts improving care and cure rates of children with cancer in low- and middle-income countries worldwide. The enormity of the task involved can be gleaned from the situation in India. Much of the credit for the early efforts at capacity building for childhood cancer care in India should go to Ian Magrath, first through the National Cancer Institute and later from INCTR.16 Despite Magrath’s considerable efforts, at the first SIOP India training project in 1997, only 50 oncologists could be identified as being involved in treating children with cancer (many of the respondents were adult oncologists and radiation oncologists), and fewer than 10% of all children with cancer were receiving what would be considered adequate therapy. In the 2 decades since, pediatric oncologists in India have undertaken the enormous task of capacity building through a series of workshops and regional and national continuing medical education seminars. Today, the recently formed Indian Pediatric Oncology Group lists 87 pediatric oncologists (numbers supplied by Dr Sameer Bakhshi, president of the Indian Pediatric Oncology Group), and the proportion of children with cancer who are treated at an established cancer center has tripled. Governmental programs offer safety net insurance for the indigent population, and Indian railways offer discounted services for travel to treatment centers. But the overall situation in India is far from satisfactory. Based on an estimated incidence of 50,000 new cases of childhood cancer per year, the ratio of new cases for each pediatric oncologist in India is greater than 500 to 1, a

PGCH_ch22_391-412.indd 406

8/20/18 8:27 AM

407 Chapter 22: Global Health Research: Role of Specialty Care

s­ taggering figure compared to the approximately 15 to 1 ratio in the United States.41,42 Modern diagnostic services are available to the indigent population only in a few selected centers. Therefore, much remains to be done with regard to capacity building for treating children with cancer in India and low- and middle-income countries in general, but it cannot be accomplished without a national policy and governmental financial support. The number of care facilities must increase, and they must be closer to where patients live. For large countries, such as India, a hub-and-spoke system of shared care can evolve. A regional cancer center at a state or provincial capital may provide essential diagnostic evaluation and formulation of a plan of care and work with smaller centers at a district (county) level. Such a system will reduce the burden on families and prevent abandonment of therapy, a major cause of poor results in low-income countries.

Gaps: What Needs to Happen Next? The resources for the development of disease-identifying biomarkers (see Appendix C) and the systematic evaluation of biomarker testing on clinical outcomes requires identification of new financial resources; clinicians partnered with patient advocacy groups to garner support from the hospital system, community, philanthropic private donors, industry, and government. In all of this, the partnership with patients is the single most important element. It can start at a small level, as I heard in anecdotal accounts from my colleagues in India—well-to-do families willingly approve the use of leftover drugs from a vial for treatment of another child, so that the drug is not wasted, and so on. This common, basic, shared empathy among patients and families led to the creation of patient support groups and generated community support for a multitude of diseases, which, in turn, generated community response and forced government allocations in various forms, such as the NIH in the United States, Medical Research Council in the United Kingdom, and similar country-specific models worldwide. The twinning programs listed in earlier sections are transferring this approach for improving care to low- and middle-income countries with ever-improving outcomes worldwide. Interested readers can visit the Cancer Control Web site, www.cancercontrol.info, to read about ongoing global efforts to reduce the gap of knowledge across low- and middle-income countries. The articles by Drs Eden and Lecciones illustrate what is being done in Bangladesh, East Africa, and the Philippines, respectively.43–45 Today, there is no need for pediatric oncologists in low- and middle-income countries to feel alone in facing children with life-­ threatening cancer or blood diseases; helpful advice is literally a phone call or an e-mail away. The Internet revolution has closed the knowledge gap considerably. Free e-mail services have proved vital in low- and middle-income countries where public and private institutions do not routinely offer institutional-based e-mail servers. When the author was studying medicine in India, there was no access to medical journals in real time; all learning occurred through old textbooks and clinical experience. Laboratory support was meager, essentially restricted to some basic tests such as blood cell counts, blood sugar, blood urea nitrogen, creatinine,

PGCH_ch22_391-412.indd 407

8/20/18 8:27 AM

408 Part 4: Models for Global Health Research

bilirubin, prothrombin time and partial thromboplastin time, and urine Clini­ test for reducing substances, to name a few. Electrolyte testing was not available in real time; there was one flame photometer available in the entire city of Hyderabad in a research laboratory, unconnected with any hospitals. Today, the scenario is vastly different in many aspects. Today, a student in any part of the world can have real-time access to advancements in medicine through the US National Library of Medicine and NIH PubMed (www.ncbi.nlm.nih.gov/ pubmed). Short- and long-term training scholarships are available through several agencies. Additionally, online courses are offered by several institutions with scholarships, such as the University of Ulm, Germany (masteroncology@ uni-ulm.de) and the Union for International Cancer Control Global Education and Training Initiative ([email protected]; www.uicc.org/sites/ main/files/atoms/files/UICC_GETIOnePager_2015.pdf). The SIOP offers scholarships to pediatric oncologists in low- and middle-income countries to attend its annual meeting. Online tumor board services for case discussions are available through certain institutions (eg, St. Jude Children’s Research Hospital, Memphis, TN). This situation has plusses and minuses. The plus is knowing what can be achieved with unrestricted resources, and the minus is the sense of despair and frustration from not being able to use this knowledge to help patients. What the young specialist needs to learn is the power of clinical medicine and not to be frustrated by the limitations imposed by national or personal wealth. After all, for the most part, what modern technology is accomplishing is providing a biochemical or molecular basis for explaining variations in the clinical observations of years past. Clinical variations point to underlying genetic alterations. Virtually all cancer predisposition syndromes were first identified through clinical observations; the molecular basis has only been discovered within the last 50 years. Certain inherited red blood cell disorders, like hemoglobinopathies, G6PD deficiency, and blood group variations in the Duffy antigen, occur predominantly in the malaria-endemic tropics, leading to the hypothesis that malaria pressure was a significant factor in the current endemic expression of these disorders (these abnormalities are uncommon in Northern Europeans and Native Americans). That hemophilia A and B were distinct entities was discovered long before the identification of factor VIII and IX, and so on. It is the variation in the clinical response to arsenic, an old Chinese medicine, that eventually lead to its unique role in the present-day therapy of acute promyelocytic leukemia. The unique curability of acute myeloid leukemia in Down syndrome was similarly identified in clinical trials and eventually proven in part to be due to endogenous modulation of cytarabine metabolism on account of gene dosage effect of cystathionine beta synthase.46 Thus, the most important element of the practice of medicine that trainees in low- and middle-income countries can learn is the power of clinical observations. This can come only from careful record keeping and accounting for the outcome of all children seen at a local institution with cancer and blood diseases, treated or untreated (ie, maintain an institutional cancer registry).

PGCH_ch22_391-412.indd 408

8/20/18 8:27 AM

409 Chapter 22: Global Health Research: Role of Specialty Care

Finally, a clinical trial culture is vital and will lead to improvements in patient care and the understanding of the biology of disease. Collaborative clinical trials lead to improved cure rates and clinical expertise at a personal and national level.16 However, organizing clinical trials is complex and requires considerable infrastructure—a data center, clinical research associates, statisticians, data-­ monitoring committees, and regulatory compliance centers such as institutional review boards, all of which require funding support. The intent of clinical trials in low- and middle-income countries is not primarily to generate new therapies but, rather, adapt already known successful therapies to the local conditions in a safe and effective manner. Clinical trials help in standardizing diagnostic testing and quality control of the testing itself across various laboratories; safety of patients is enhanced through optimizing therapy and recommendations for dose modifications based on toxicity and real-time monitoring of toxicity and mortality. Thus, a programmatic approach to capacity building and access to care is essential. It is this gap in the approach to solving health care issues in low- and middle-income countries that needs to be closed. In a sign of improving national wealth, the Narendra Modi government in India announced the launching of the National Health Protection Scheme in February 2018. The program, likely the largest of its kind in the world, plans to provide 500,000 Indian rupees (about US $7,860) coverage for catastrophic illness treatment for the indigent throughout the country—an estimated 100 million individuals are expected to benefit from this program. The excitement and upbeat mood was evident at a recent continuing medical education conference conducted by the pediatric hematology/oncology chapter of the Indian Academy of ­Pediatrics—the worry no longer is the cost of primary treatment for childhood cancer; rather, the focus of the conference was on designing appropriate cost-­ effective testing and treatment. Clearly the discussants had full access to the relevant current literature. It is no longer an issue of knowledge deficit but, rather, one of systems development for standardization of laboratory testing and other diagnostic requirements; this should be a component of global education. This portends well for other emerging nations—as each country’s wealth improves, so does access to knowledge and care.

References 1. Zuelzer WW, Nathan DG. Pediatric hematology in historical perspective. In: Orkin SH, Nathan DG, Ginsburg D, Look AT, Fisher DE, Lux SE, eds. Nathan and Oski’s Hematology of Infancy and Childhood. 7th ed. Philadelphia, PA: Saunders Elsevier; 2009:3–17 2. Smith MJ, Urquhart JE, Harkness EF, et al. The contribution of whole gene deletions and large rearrangements to the mutation spectrum in inherited tumor predisposing syndromes. Hum Mutat. 2016;37(3):250–256 3. Cooley TB, Lee P. A series of cases of splenomegaly in children with anemia and peculiar bone changes. Trans Am Pediatr Soc. 1925;37:29 4. Herrick JB. Peculiar elongated and sickle-shaped red corpuscles in a case of severe anemia. Arch Intern Med. 1910;6:517–521 5. Bunn HF, Forget BG. Hemoglobin: Molecular, Genetic and Clinical Aspects. Philadelphia, PA: WB Saunders; 1990

PGCH_ch22_391-412.indd 409

8/20/18 8:27 AM

410 Part 4: Models for Global Health Research

6. Pauling L, Itano HA, et al. Sickle cell anemia, a molecular disease. Science. 1949;109(2835):443 7. Zuelzer WW, Apt L. Acute hemolytic anemia due to naphthalene poisoning; a clinical and experimental study. J Am Med Assoc. 1949;141(3):185–190 8. Beutler E, Duparc S; G6PD Deficiency Working Group. Glucose-6-phosphate dehydrogenase deficiency and antimalarial drug development. Am J Trop Med Hyg. 2007;77(4):779–789 9. Mollison PL. Clinical aspects of Rh immunization. Philip Levine Award address. Am J Clin Pathol. 1973;60(3):287–301 10. Ravindranath Y. Evolution of modern treatment of childhood acute leukemia and cancer: adventures and battles in the 1970s and 1980s. Pediatr Clin North Am. 2015;62(1):1–10 11. Kaplan J, Ravindranath Y, Peterson WD Jr. T and B lymphocyte antigen-positive null cell leukemias. Blood. 1977;49(3):371–378 12. Weng AP, Ferrando AA, Lee W, et al. Activating mutations of NOTCH1 in human T cell acute lymphoblastic leukemia. Science. 2004;306(5694):269–271 13. Penton AL, Leonard LD, Spinner NB. Notch signaling in human development and disease. Semin Cell Dev Biol. 2012;23(4):450–457 14. Basak A, Hancarova M, Ulirsch JC, et al. BCL11A deletions result in fetal hemoglobin persistence and neurodevelopmental alterations. J Clin Invest. 2015;125(6):2363–2368 15. Relling MV, Evans WE. Pharmacogenomics in the clinic. Nature. 2015;526(7573):343–350 16. Pui CH, Yang JJ, Hunger SP, et al. Childhood acute lymphoblastic leukemia: progress through collaboration. J Clin Oncol. 2015;33(27):2938–2948 17. Sitaresmi MN, Mostert S, Purwanto I, Gundy CM, Sutaryo, Veerman AJ. Chemotherapy-related side effects in childhood acute lymphoblastic leukemia in Indonesia: parental perceptions. J Pediatr Oncol Nurs. 2009;26(4):198–207 18. Magrath I, Shanta V, Advani S, et al. Treatment of acute lymphoblastic leukaemia in countries with limited resources; lessons from use of a single protocol in India over a twenty year period [corrected]. Eur J Cancer. 2005;41(11):1570–1583 19. Mathews V, George B, Lakshmi KM, et al. Single-agent arsenic trioxide in the treatment of newly diagnosed acute promyelocytic leukemia: durable remissions with minimal toxicity. Blood. 2006;107(7):2627–2632 20. Chandy M. Management of haemophilia in developing countries with available resources. Haemophilia. 1995;1(Suppl 1):44–48 21. Aur RJ, Simone J, Hustu HO, et al. Central nervous system therapy and combination chemotherapy of childhood lymphocytic leukemia. Blood. 1971;37(3):272–281 22. Ravindranath Y. Biology of childhood acute lymphoblastic leukemia (ALL) in low/middle-income countries—a case for using age at diagnosis for defining low-risk ALL. Pediatr Blood Cancer. 2015;62(10):1687–1688 23. Forestier E, Schmiegelow K; Nordic Society of Paediatric Haematology and Oncology NOPHO. The incidence peaks of the childhood acute leukemias reflect specific cytogenetic aberrations. J Pediatr Hematol Oncol. 2006;28(8):486–495 24. Howard SC, Metzger ML, Wilimas JA, et al. Childhood cancer epidemiology in low-income countries. Cancer. 2008;112(3):461–472 25. Israels T, Challinor J, Howard S, Arora RH. Treating children with cancer worldwide—challenges and interventions. Pediatrics. 2015;136(4):607–610 26. Global Burden of Disease Cancer Collaboration; Fitzmaurice C, Allen C, Barber RM, et al. Global, regional, and national cancer incidence, mortality, years of life lost, years lived with disability, and disability-adjusted life-years for 32 cancer groups, 1990 to 2015: a systematic analysis for the Global Burden of Disease Study. JAMA Oncol. 2017;3(4):524–548 27. Garner EF, Maizlin II, Dellinger MB, et al. Effects of socioeconomic status on children with welldifferentiated thyroid cancer. Surgery. 2017;162(3):662–669 28. Ravindranath Y, Wagner HP, Masera G, et al. Improved outcome for children with acute leukemia: how to address global disparities. In: Reaman GH, Smith FO, eds. Childhood Leukemia: A Practical Handbook. Heidelberg, Germany: Springer; 2011:305–324

PGCH_ch22_391-412.indd 410

8/20/18 8:27 AM

411 Chapter 22: Global Health Research: Role of Specialty Care

29. Arora RS, Challinor JM, Howard SC, Israels T. Improving care for children with cancer in low- and middle-income countries—a SIOP PODC initiative. Pediatr Blood Cancer. 2016;63(3):387–391 30. Solberg CT, Norheim OF, Barra M. The disvalue of death in the global burden of disease. J Med Ethics. 2018;44(3):192–198 31. World Health Organization International Agency for Research on Cancer. World Cancer Report 2014. Stewart BW, Wild CP, eds. Geneva, Switzerland: World Health Organization; 2014. http:// publications.iarc.fr/Non-Series-Publications/World-Cancer-Reports/World-Cancer-Report-2014. Accessed June 26, 2018 32. Barr RD, Antillón Klussmann F, Baez F, et al. Asociación de Hemato-Oncología Pediátrica de Centro América (AHOPCA): a model for sustainable development in pediatric oncology. Pediatr Blood Cancer. 2014;61(2):345–354 33. Rodriguez-Galindo C, Friedrich P, Alcasabas P, et al. Toward the cure of all children with cancer through collaborative efforts: pediatric oncology as a global challenge. J Clin Oncol. 2015;33(27):3065–3073 34. Veerman AJ, Sutaryo, Sumadiono. Twinning: a rewarding scenario for development of oncology services in transitional countries. Pediatr Blood Cancer. 2005;45(2):103–106 35. Mostert S, Sitaresmi MN, Gundy CM, Sutaryo, Veerman AJ. Does aid reach the poor? Experiences of a childhood leukaemia outreach-programme. Eur J Cancer. 2009;45(3):414–419 36. Wagner H. Applicability of the Hungarian experience to PODC. Med Pediatr Oncol. 1999;32(1):70 37. Hesseling PB. The SIOP burkitt lymphoma pilot study in Malawi, Africa. Med Pediatr Oncol. 2000;34(2):142 38. Harif M, Barsaoui S, Benchekroun S, et al. Treatment of B-cell lymphoma with LMB modified protocols in Africa—report of the French-African Pediatric Oncology Group (GFAOP). Pediatr Blood Cancer. 2008;50(6):1138–1142 39. Oberlin O, Harif M, Perilongo G, Valteau-Couanet D, d’Angio GJ, Patte C. In memoriam—Jean Lemerle (1930–2014). Pediatr Blood Cancer. 2014;61(12):2333–2334 40. Hesseling PB, Molyneux E, Tchintseme F, et al. Treating Burkitt’s lymphoma in Malawi, Cameroon, and Ghana. Lancet Oncol. 2008;9(6):512–513 41. American Cancer Society. Key statistics for childhood cancers. https://www.cancer.org/cancer/ cancer-in-children/key-statistics.html. Revised August 22, 2016. Accessed June 26, 2018 42. American Society of Clinical Oncology. The state of cancer care in America, 2015: a report by the American Society of Clinical Oncology. J Oncol Pract. 2015;11(2):79–113 43. Eden T. Childhood cancers in low- and middle-income countries: prevention and potentially curable treatment? http://www.cancercontrol.info/wp-content/uploads/2017/12/66-70-Eden.pdf. Published 2017. Accessed July 30, 2018 44. Magrath I, Sutcliffe S. Building capacity for cancer treatment in low-income countries with particular reference to East Africa. http://cancercontrol.info/wp-content/uploads/2014/08/60-66Ian-Magrath_cc2014.pdf. Published 2014. Accessed July 30, 2018 45. Lecciones JA. The global improvement of childhood cancer care in the Philippines. http://www. cancercontrol.info/cc2015/the-global-improvement-of-childhood-cancer-care-in-the-philippines. Accessed July 30, 2018 46. Ravindranath Y, Abella E, Krischer JP, et al. Acute myeloid leukemia (AML) in Down’s syndrome is highly responsive to chemotherapy: experience on Pediatric Oncology Group AML Study 8498. Blood. 1992;80(9):2210–2214

PGCH_ch22_391-412.indd 411

8/20/18 8:27 AM

PGCH_ch22_391-412.indd 412

8/20/18 8:27 AM

APPENDIXES

PGCH_ch23_AppA_413-424.indd 413

8/8/18 11:07 AM

PGCH_ch23_AppA_413-424.indd 414

8/8/18 11:07 AM

415

APPENDIX A

Faculty Competencies for Global Health

G l o b a l H e a l t h Ta s k F o r c e

International partnerships among medical professionals from different countries are an increasingly common form of clinical and academic collaboration. Global health partnerships can include a variety of activities and serve multiple purposes in the areas of research, medical education and training, health system improvement, and clinical care. Competency domains, introduced by the Accreditation Council for Graduate Medical Education and the American Board of Medical Specialties in 1999,1 are now widely accepted to provide an organized, structured set of interrelated competencies, mostly for medical trainees. Although there are now competency domains and specific competencies recommended for pediatric trainees pursuing further professional training in global child health,2 none of these addresses competencies for faculty in global health. In 2010 the Academic Pediatric Association established a Global Health Task Force to provide a forum for communication and collaboration for diverse pediatric academic societies and groups to advance global child health. Given the burgeoning demand for global health training, and particularly in light of a new global perspective on health education, as outlined in a Lancet Commission Report: Health Professionals for a New Century: Transforming Education To Strengthen Health Systems in an Interdependent World,3 in 2012 the Global Health Task Force noted the lack of defined faculty competencies and decided to develop a set of global health competencies for pediatric faculty engaged in the teaching and practice of global health. Using some of the principles suggested by Milner, et al. to define a competency framework, four domains were chosen, adapted from existing collaborative practice competencies.4 A fifth domain was added to address some of the unique challenges of global health practice encountered when working outside of one’s own culture and health system. The domains are described below and specific competencies are provided for faculty working in global health research, education, administration, and clinical practice.

Competency Domains

The Academic Pediatric Association Global Health Task Force reviewed competency definitions and accepted that of the Association of Schools of Public Health (ASPH) as most applicable. ASPH defines competency as “a unique set of applied knowledge skills and other attributes grounded in theory and evidence for the broad practice of public health.”5 The competency domains in this document, including values/ethics, roles/responsibilities, communication and team building/teamwork, were adapted primarily from existing collaborative practice competencies.4 1. Values/Ethics: A sense of shared purpose to support the common good in health care and research that reflects a shared commitment to a safe, efficient and effective system for these purposes 2. Roles/Responsibilities: Recognition of the limits of one’s professional expertise, and the need for cooperation, coordination and collaboration 3. Communication: A demeanor of openness, with a style that utilizes opportunities to improve interactions, organization and functioning 4. Team Building and Teamwork: Relationship building to perform effectively as a team and individually in different team roles 5. Special Considerations: Anticipation of difficulties and unexpected circumstances when working in culturally unfamiliar and limited resource settings Faculty Competencies for Global Health

PGCH_ch23_AppA_413-424.indd 415

1

June 5, 2014

8/8/18 11:07 AM

416 Appendix A: Faculty Competencies for Global Health

Faculty Competencies for Global Health

G l o b a l H e a l t h Ta s k F o r c e

Universal Competencies (Common to All Areas of Global Health) Several faculty competencies are relevant to all those working in global health, whether in research, education, administration or clinical practice. These universal competencies are listed below under specific domains: 1. Values/Ethics: Faculty will be able to… 1.1

Seek invitations to work with the host population/organization

1.2

Establish transparent relationships with host country partners

1.3

Align goals and objectives with host priorities

1.4

Establish bidirectional relationships that mutually benefit all participants

1.5

Recognize that public health and infrastructure priorities may be highly valued priorities that may need to supplant some goals or objectives of the visiting faculty

1.6

Engage a local partner to help define priority needs of the local population

1.7

Identify the key social determinants of health in the host country

1.8

Appreciate a variety of health care delivery models including governmental, faith-based and traditional approaches

1.9

Recognize the role of the traditional health care providers

1.10 Appreciate the differing cultural and ethical contexts for research, education, administration, and clinical practice, and engage in honest discussion about principles that differ between groups, and articulate where compromise is or is not possible. 2. Roles/Responsibilities: Faculty will be able to… 2.1

Respect, value and work within the host cultural context with mutually defined expectations and roles

2.2

Recognize one’s role and work respectfully as visiting faculty at host institutions

2.3

Demonstrate cultural respect and sensitivity

2.4

Recognize one’s own limitations, and strive to appreciate the challenges faced by colleagues working with very limited resources and how that affects their decision making process

2.5

Seek opportunities for continuous learning and self-assessment.

3. Communication: Faculty will be able to… 3.1

Establish bidirectional opportunities, mentorship, teaching and learning

3.2

Engage in active listening

3.3

Make efforts to integrate smoothly into the local system

Faculty Competencies for Global Health

PGCH_ch23_AppA_413-424.indd 416

2

June 5, 2014

8/8/18 11:07 AM

417 Appendix A: Faculty Competencies for Global Health

Faculty Competencies for Global Health

G l o b a l H e a l t h Ta s k F o r c e

3.4

Create locally valuable output (reports, policies, research papers, curricula, educational materials, reference materials)

3.5

Establish mutual trust among participants by fostering openness and acceptance

3.6

Facilitate local, national and international discussion/presentation of outcomes.

4. Teamwork and Team-Based Interaction in the Host Country: Faculty will be able to… 4.1

Collaborate in prioritization of goals and objectives

4.2

Engage a local partner to help define priority needs of the local population

4.3

Foster local leadership

4.4

Empower local collaborators

4.5

Develop and support local inter-professional collaborations

4.6

Help identify local resources (e.g., financial and political support, potential partners from other disciplines, physical infrastructure)

4.7

Offer expertise in program monitoring and evaluation

4.8

Advocate for child and maternal health in partnership with local and national colleagues

4.9

Develop explicit, equitable power sharing agreements.

5. Special Considerations: Faculty will be able to… 5.1

Anticipate difficulties that may be encountered—including ethical dilemmas, time constraints, burden of work, and concerns for personal well-being

5.2

Anticipate unexpected circumstances and cope with high stress levels and frustrations that result from unrealistic expectations

5.3

Develop skills in conflict anticipation, awareness and resolution

5.4

Recognize the ongoing process of adjustment when working within a new culture.

Faculty Competencies for Global Health

PGCH_ch23_AppA_413-424.indd 417

3

June 5, 2014

8/8/18 11:07 AM

418 Appendix A: Faculty Competencies for Global Health

Faculty Competencies for Global Health

G l o b a l H e a l t h Ta s k F o r c e

Competencies Relevant to Specific Areas within the Practice of Global Health

Research Competencies R1. Values/Ethics: Faculty will be able to… R1.1 Align research with the research goals of the host institution/collaborators/country R1.2 Seek opportunities to merge research projects with public service for the host population R1.3 Design research that informs program improvement R1.4 Recognize and appropriately credit intellectual property in presentations and publications R1.5 Adhere to research ethics processes and standards of local and national organizations and the World Health Organization. R2. Roles/Responsibilities: Faculty will be able to… R2.1 Build a bidirectional research partnership working with the local stakeholders R2.2 Maintain a network of research stakeholders R2.3 Help the host academic community collaborate with local public health personnel to focus on social and economic determinants of health. R3. Communication: Faculty will be able to… R3.1 Plan and communicate about authorship in advance of beginning the work R3.2 Publish research in peer-reviewed journals with equitable distribution of authorship R3.3 Translate the research into action benefiting the host country. R4. Teamwork and Team Based Interaction: Faculty will be able to… R4.1 Incorporate development of sustainable research infrastructure with collaborative local partners R4.2 Provide research skills that aid in accomplishing the tasks of the local team R4.3 Empower local collaborators to develop their own research questions/ideas R4.4 Integrate research into the existing local job market and economy R4.5 Advocate for sharing of research resources (references, educational materials, institutional research boards, statistical analyses) among all partners R4.6 Build an implementation and evaluation plan into research projects that assesses impact on the host population and host workers R4.7 Build relationships and collaborate with other visiting groups; consolidate research when possible R4.8 Identify funding opportunities to address local needs and support sustainable change. Faculty Competencies for Global Health

PGCH_ch23_AppA_413-424.indd 418

4

June 5, 2014

8/8/18 11:07 AM

419 Appendix A: Faculty Competencies for Global Health

Faculty Competencies for Global Health

G l o b a l H e a l t h Ta s k F o r c e

Education Competencies E1. Values/Ethics: Faculty will be able to... E1.1 Design and implement ethically sound, culturally appropriate, relevant, and sustainable educational programs that are mindful of differences in resources and cultural paradigms E1.2 Anticipate difficulties that trainees may encounter during global health education electives and related experiences including ethical dilemmas, time constraints, knowledge limitations, and personal concerns E1.3 Provide mentorship, counseling and support for trainees before, during, and after global health experiences. E2. Roles/Responsibilities: Faculty will be able to... E2.1 Demonstrate the necessary content knowledge to develop and deliver curricula in global child health E2.2 Utilize academic methodologies in the development of educational programs, including emphasis on evaluation, process improvement, assessment of impact, and scholarly output E2.3 Utilize the resources available to effectively deliver an educational program E2.4 Ensure that curricula are integrated within a pre-existing infrastructure and meet the needs of the learners E2.5 Teach through role modeling and use of educational best practices E2.6 Provide mentorship and teaching in medical education to domestic and global partner faculty and trainees. E3. Communication: Faculty will be able to… E3.1 Determine the needs, resources, cultural paradigms, and educational levels of the target audience to shape the content and venue for educational programs E3.2 Establish open communication with educational partners and trainees to ensure that learning objectives are clearly defined and venues are available for open and honest feedback E3.3 Develop a shared educational mission and vision with local and global educational partners with an emphasis on training new generations of trainers and providers. E4. Teams/Teamwork: Faculty will be able to... E4.1 Design educational programs in partnership with target audiences including bidirectional educational opportunities with global partners whenever possible E4.2 Collaborate with educational partners and trainees during all stages of education, including program development, implementation, evaluation, and scholarly output. Faculty Competencies for Global Health

PGCH_ch23_AppA_413-424.indd 419

5

June 5, 2014

8/8/18 11:07 AM

420 Appendix A: Faculty Competencies for Global Health

Faculty Competencies for Global Health

G l o b a l H e a l t h Ta s k F o r c e

Administration Competencies A1. Values/Ethics: Faculty will be able to… A1.1 Develop programmatic outcomes that are mutually agreed upon as beneficial to the community A1.2 Develop and continuously improve leadership skills A1.3 Conduct collaboration with cultural respect, understanding that acceptance and trust must be developed to advance mutual outcomes A1.4 Recognize that public health efforts need to be considered in program development. A2. Roles/Responsibilities: Faculty will be able to… A2.1 Strengthen health care systems in which they work A2.1 Understand that training of US trainees at the expense of the host institution is not appropriate, and that adequate preparation, supervision and support from US institutions is vital A2.3 Maintain patience and respect among partners to establish sustainable collaboration A2.4 Mutually determine roles and responsibilities for all aspects of the work, including skill level, percent effort, and qualifications of those to be engaged in the work. A3. Communication: Faculty will be able to… A3.1 Use listening skills to encourage and support cross cultural relationships A3.2 Maintain professionalism when interacting with a variety of colleagues who have different administrative paradigms A3.3 Anticipate and identify areas of conflict, and use conflict management techniques to respectfully and professionally resolve conflicts. A4. Teams/Teamwork: Faculty will be able to… A4.1 Establish and prioritize mutually beneficial goals and objectives for any programmatic effort A4.1 Build relationships and understand the strengths of each team member A4.3 Maintain financial transparency in all programmatic efforts.

Faculty Competencies for Global Health

PGCH_ch23_AppA_413-424.indd 420

6

June 5, 2014

8/8/18 11:07 AM

421 Appendix A: Faculty Competencies for Global Health

Faculty Competencies for Global Health

G l o b a l H e a l t h Ta s k F o r c e

Clinical Competencies C1. Values/Ethics: Faculty will be able to… C1.1 Acknowledge treatment guidelines and restrictions for country and/or facility C1.2 Provide clinical care that is patient centered and respectful of patient’s privacy especially with regard to photography and sharing of patient information for teaching purposes. C2. Roles/Responsibilities: Faculty will be able to… C2.1 Appreciate the structure and function of the local and national health care systems C2.2 Adapt clinical practice to resource limitations within the host country. C3. Communication: Faculty will be able to… C3.1 Engage host health workers and interpreters to ensure accuracy of clinically relevant information C3.2 Establish and enhance relationships and collaborations between local clinicians and clinicians in faculty’s own country who could provide expertise in various areas of global health C3.3 Emphasize the role of the host institution partners in the development of clinical programs. C4. Teams/Teamwork: Faculty will be able to… C4.1 Practice clinically in a manner that encourages a multidisciplinary team approach to patient care, respecting local protocols and operations C4.2 Engage team members in a manner that recognizes, utilizes and strengthens locally available resources to achieve best practice without dependence on higher technology C4.3 Develop clinical programs, in conjunction with host partners, ensuring mutual efforts to C4.3.1 Identify the need for clinical programs C4.3.2 Determine clinical program goals and feasibility C4.3.3 Define goal-based outcome parameters based on priorities established with incountry partners C4.3.4 Define program structure, develop written program policy/guidelines for program function and team member responsibilities, and monitor program function C4.3.5 Determine how outcome data will be measured, collected, managed and analyzed, and assist with program evaluation C4.3.6 Determine how the program will be sustained C4.3.7 Determine how the program could be replicated under different circumstances within the host country. Faculty Competencies for Global Health

PGCH_ch23_AppA_413-424.indd 421

7

June 5, 2014

8/8/18 11:07 AM

422 Appendix A: Faculty Competencies for Global Health

Faculty Competencies for Global Health

G l o b a l H e a l t h Ta s k F o r c e

Development of the Competencies Development of this document was accomplished by a group of practitioners and scholars from the APA Global Health Task Force who convened monthly by teleconference (for 10 meetings) during 201314 and met in person at the annual meeting of the Pediatric Academic Societies in May 2013. APA Global Health Task Force Chair: Ruth Etzel Research Group Leaders: Ruth Etzel and Robert Bortolussi Contributors: Eiman Abdulrahman, Colleen Kraft, Danielle Laraque, Elizabeth Lowenthal, Michelle Niescierenko, Bolajoko Olusanya, Andrew Sherman, Andrew Steenhoff, Parminder Suchdev, and Alvin Zipursky Education Group Leaders: Melanie Anspacher, Cindy Howard, Christiana Russ, Nicole St. Clair Contributors: Tanya Arora, Merrian Brooks, Sabrina Butteris, Jennifer Chapman, Keri Cohn, Sophie Gladding, Areej Hassain, Leah Kern, Susan Leib, Mary Ann Lofrumento, Carolyn Moneymaker, Andy Muelenaer, Mike Pitt, Donna Staton, and Stephen Warrick Administration Group Leaders: Chandy John and Chuck Schubert Contributors: Maneesh Batra, Ann Behrmann, Kevin Chan, Jim Harisiades, Cliff O’Callahan, Pia Pannaraj, Larry Rosser, Francis Rushton, and Edgar Vesga Clinical Group Leaders: Mirzada Kurbasic and Yvonne Vaucher Contributors: Kristen Breslin, Marc Callender, Rajesh Dudani, Ruth Kihara, Roseda Marshall, Kevin Schwartz, Tina Slusher, and Andrea Summers

Suggested Citation Etzel R, Kurbasic M, Staton D, Vaucher Y, Bortolussi R, Anspacher M, Howard C, John C, Russ C, Schubert C, St. Clair N, Abdulrahman E, Arora T, Batra M, Behrmann A, Breslin K, Brooks M, Butteris S, Callender M, Chan K, Chapman J, Cohn K, Dudani R, Gladding S, Harisiades J, Hassai A, Kern L, Kihara R, Kraft C, Laraque D, Leib S, Lofrumento M, Lowenthal E, Marshall R, Moneymaker C, Muelenaer A, Niescierenko M, O’Callahan C, Olusanya B, Pannaraj P, Pitt M, Rosser L, Rushton F, Schwart K , Sherman A, Slusher T, Steenhoff A, Suchdev P, Summers A, Vesga E, Warrick S, Zipursky A. Faculty competencies for global health. Reston, VA: Academic Pediatric Association, 2014.

Faculty Competencies for Global Health

PGCH_ch23_AppA_413-424.indd 422

8

June 5, 2014

8/8/18 11:07 AM

423 Appendix A: Faculty Competencies for Global Health

Faculty Competencies for Global Health

G l o b a l H e a l t h Ta s k F o r c e

Acknowledgements Thanks to Bronwen Anders, Jon Andrus, Steve Berman, Christen Brown, Benard Dreyer, Claibourne Dungy, Ludivico Guarini, Robert Hilliard, Shipra Kaicher, David Keller, Jonathan Klein, Suzinne Pak-Gorstein, Janet Serwint, Jonathan Spector and Peter Szilagyi for their support of this project.

References 1 Sklar DP. Integrating competencies. Academic Medicine 2013;88(8):1049-51. 2 Howard CR, Gladding SP, Kiguli S, Andrews JS, John CC. Development of a competency-based curriculum in global child health. Academic Medicine 2011;86(4):521-8. 3 Frenk J, Chen L, Bhutta ZA, et al. Health professionals for a new century: transforming education to strengthen health systems in an interdependent world. Lancet 2010;376:1923-58. 4 Milner RI, Gusic ME, Thorndyke LE. Perspective: Toward a competency framework for faculty. Acad Med 2011;86(10):1204-10. 5 Association of Schools of Public Health. What is a competency? http://www.asph.org/document. cfm?page=1146

Faculty Competencies for Global Health

9

June 5, 2014

Reprinted with permission from the Academic Pediatric Association.

PGCH_ch23_AppA_413-424.indd 423

8/8/18 11:07 AM

PGCH_ch23_AppA_413-424.indd 424

8/8/18 11:07 AM

425

APPENDIX B LIST OF ABBREVIATIONS/ORGANIZATIONS Following is a list of important/significant abbreviations and organizations that appear in the chapters in this manual. Please note: This list is not comprehensive; other abbreviations/organizations may appear in the chapters or in more than one chapter.

Part 1: Operating Principles for Engaging in Global Education and Research Chapter 1: Global Child Health Populations: A Community Pediatrics Framework and Relevance to Education and Research

CHD Congenital heart disease HCA Haiti Cardiac Alliance HIV Human immunodeficiency virus NIH National Institutes of Health PIH Partners in Health SDGs Sustainable Development Goals

Chapter 2: Evolution of Our Understanding of the Concept and ­Challenges of Global Health Research and Education

AAP American Academy of Pediatrics ABP American Board of Pediatrics CUGH Consortium of Universities for Global Health FIC John E. Fogarty International Center for Advanced Study in the Health Sciences GME Graduate medical education GPEC Global Pediatric Education Consortium IMF International Monetary Fund IMG International medical graduate LCME Liaison Committee on Medical Education LNHO League of Nations Health Organization MDGs Millennium Development Goals MEPI Medical Education Partnership Initiative NIH  Common   Fund National Institutes of Health fund to support high-priority areas UN United Nations USAID United States Agency for International Development WHO World Health Organization World Bank Working for a world free of poverty

PGCH_ch24_AppB_425-430.indd 425

8/16/18 9:20 AM

426 Appendix B: List of Abbreviations/Organizations

Chapter 3: Positive Strategies in Achieving Health for All Children: An Equity Framework and Its Effect on Research Design and Education ARR Annual rate of reduction CCI Composite coverage index CHNRI Child Health and Nutrition Research Initiative CHW Community health worker GAPPD Global Action Plan for Pneumonia and Diarrhoea GBD Global Burden of Disease MCEE Maternal and Child Epidemiology Estimation

Chapter 4: Epidemiology and Social Determinants of Global Health as the Basis for Education and Research DALY Disability-adjusted life year QALY Quality-adjusted life year MICS Multi-indicator Cluster Surveys UNICEF United Nations Children’s Fund

Chapter 5: A New Development Matrix for Global Child Health

BRANCH Building Regional Alliances to Nurture Child Health DWA Detroit Water Authority FWS Flint Water System IDA Iron deficiency anemia IMR Infant mortality rate MCH Maternal and child health NICU Neonatal intensive care unit UNHCR United Nations Refugee Agency UNICEF United Nations Children’s Fund USDA United States Department of Agriculture WIC Special Supplemental Nutrition Program for Women, Infants, and Children

Part 2: Domains of Competency for Global Health Chapter 6: Global Health Administrative Competencies

ACGME Accreditation Council for Graduate Medical Education APA Academic Pediatric Association HDI Haiti Development Institute MPH Master of public health NGO Nongovernmental organization RCPCH Royal College of Paediatrics and Child Health SUNY State University of New York SVLC Sustainable Village and Learning Community THET Tropical Health and Education Trust WEIGHT Working Group on Ethics Guidelines for Global Health Training

PGCH_ch24_AppB_425-430.indd 426

8/16/18 9:20 AM

427 Appendix B: List of Abbreviations/Organizations

Chapter 7: Global Health Education Faculty Competencies

ASPH Association of Schools and Programs of Public Health

Chapter 8: Global Health Research Competencies

HPS Hantavirus pulmonary syndrome TRIPS Trade-Related Aspects of Intellectual Property Rights

Part 3: Educational Models in Global Health Settings Chapter 11: A New Advocacy Paradigm for Education: The Role of Persistence

ACE Adverse Childhood Experiences CATCH Community Access to Child Health CBO Community-based organization COSATU Congress of South African Trade Unions CRC Convention on the Rights of the Child HPS Haitian Pediatric Society ICATCH International Community Access to Child Health NMI Nelson Mandela Institute for Education and Rural Development PAPA Philippine Ambulatory Pediatric Association ROR Reach Out and Read

Chapter 12: Cross-cultural Training of Residents and Medical Students in Global Child Health

CDC US Centers for Disease Control and Prevention CLAS Culturally and Linguistically Appropriate Services IAT Implicit Association Test

Chapter 13: The Role of Simulation in Health Education Globally: A Review of the Neonatal Resuscitation Program and Helping Babies Breathe ACLS Advanced Cardiac Life Support APLS Advanced Pediatric Life Support BMV Bag-mask ventilation GRADE Grading of Recommendations Assessment, Development and ­Evaluation HBB Helping Babies Breathe ILCOR International Liaison Committee on Resuscitation LSPPDM Learn, See, Practice, Prove, Do, and Maintain MCQ Multiple-choice questionnaire NICHD Eunice Kennedy Shriver National Institute of Child Health and Human Development NRP Neonatal Resuscitation Program OSCE Objective structured clinical evaluation PALS Pediatric Advanced Life Support

PGCH_ch24_AppB_425-430.indd 427

8/16/18 9:20 AM

428 Appendix B: List of Abbreviations/Organizations

Chapter 14: Child Development: The Next Global Health Frontier AÇEV Mother Child Education Foundation ART Antiretroviral treatment CCD Care for Child Development HOME Home Observation for Measurement of the Environment IGMCD International Guide for Monitoring Child Development SGA Small for gestational age

Part 4: Models for Global Health Research Chapter 15: Environmental Hazards and Global Child Health: The Need for Evidence-Based Advocacy

ADHD Attention-deficit/hyperactivity disorder DDT Dichlorodiphenyltrichloroethane EPA US Environmental Protection Agency NCD Noncommunicable disease PCBs Polychlorinated biphenyls POP Persistent organic pollutant REACH European Union Registration, Evaluation, Authorisation and Restriction of Chemicals TSCA Toxic Substances Control Act of 1976

Chapter 16: Implication of a Community-Based Participatory Research Model in a Behavioral Intervention Project in China CAB Community advisory board CBPR Community-based participatory research ICOPE Interactive Communication with Openness, Passion, and ­Empowerment TALC Teens and Adults Learning to Communicate TRACK Teaching, Raising, And Communicating with Kids

Chapter 17: Ethical Research in Global Child Health

COI Conflict of interest CUHAS Catholic University of Health and Allied Sciences Project   SHINE Sanitation and Hygiene Innovation in Education UNCRC United Nations Convention on the Rights of the Child

Chapter 18: The GHESKIO Centers for Research in Haiti: An Education and Research Model in Action DOT Directly observed therapy GHESKIO Groupe Haitien d’Etude du Sarcome de Kaposi et des Infections Opportunistes/The Haitian Group for the Study of Kaposi’s Sarcoma and Opportunistic Infections HPV Human papillomavirus HUEH Hôpital d l’Universite d’Etat d’Haiti

PGCH_ch24_AppB_425-430.indd 428

8/16/18 9:20 AM

429 Appendix B: List of Abbreviations/Organizations

IMIS I’Institut des Maladies Infectieuses et de Santé de la Reproduction MOPHP Haitian Ministry of Public Health and Population MDRTB Multidrug-resistant tuberculosis PEPFAR US President’s Emergency Plan for AIDS Relief STI Sexually transmitted infection TB Tuberculosis TMS Trimethoprim/sulfamethoxazole

Chapter 19: Injury Prevention Research and Global Child Health

CIPRB Centre for Injury Prevention and Research, Bangladesh iRAP International Road Assessment Programme NCAP New Car Assessment Program PRECISE Prevention of Child Injury through Social Intervention and ­Education RLSSA Royal Life Saving Society—Australia RTIRN Road Traffic Injuries Research Network SoLiD Saving of Children’s Lives from Drowning TASC The Alliance for Safe Children UI Uncertainty interval UNRSC UN Road Safety Collaboration YPLL Years of potential life lost

Chapter 20: A Global Snapshot of Child Maltreatment and Child Protection

ISPCAN International Society for the Prevention of Child Abuse and Neglect

Chapter 21: Developing the Agenda for Global Child Health at the ­American Academy of Pediatrics APPD Association of Pediatric Program Directors HBS Helping Babies Survive IPA International Pediatric Association PREP Pediatrics Review and Education Program PROS Pediatric Research in Office Settings SOICH American Academy of Pediatrics Section on International Child Health

Chapter 22: Global Health Research: Role of Specialty Care

AHOPCA Asociación de Hemato-Oncología Pediátrica de Centro América ALL Acute lymphoblastic leukemia APML Acute promyelocytic leukemia ATO Arsenic trioxide BFM Berlin, Frankfurt, Muenster group COG Children’s Oncology Group CTN Clinical trial network DFCI St Jude Research Hospital Dana-Farber Cancer Institute DNA Deoxyribonucleic acid

PGCH_ch24_AppB_425-430.indd 429

8/16/18 9:20 AM

430 Appendix B: List of Abbreviations/Organizations

FAPOG French African Group of Pediatric Oncology INCTR International Network for Cancer Treatment and Research NOPHO Nordic Pediatric Hematology/Oncology PINDA Programa Infantil Nacional de Drogas Antineoplásicas PODC Pediatric Oncology in Developing Countries POG Pediatric Oncology Group SIOP Société Internationale D’Oncologie Pédiatrique SNVs Single nucleotide variations TRM Treatment-related morbidity UKALL United Kingdom ALL studies

PGCH_ch24_AppB_425-430.indd 430

8/16/18 9:20 AM

431

APPENDIX C GLOSSARY Accreditation Council for Graduate Medical Education (ACGME) competency domains

• Patient Care and Procedural Skills Residents must be able to provide patient care that is compassionate, appropriate, and effective for the treatment of health problems and the promotion of health. • Medical Knowledge Residents must demonstrate knowledge of established and evolving biomedical, clinical, epidemiological, and social behavioral sciences, as well as the application of this knowledge to patient care. • Practice-based Learning and Improvement Residents must demonstrate the ability to investigate and evaluate their care of patients, to appraise and assimilate scientific evidence, and to continuously improve patient care based on constant self-­ evaluation and lifelong learning. • Interpersonal and Communication Skills Residents must demonstrate interpersonal and communication skills that result in the effective exchange of information and collaboration with patients, their families, and health professionals. • Professionalism Residents must demonstrate a commitment to carrying out professional responsibilities and an adherence to ethical principles. • Systems-based Practice Residents must demonstrate an awareness of and responsiveness to the larger context and system of health care, as well as the ability to call effectively on other resources in the system to provide optimal health care. Accreditation Council for Graduate Medical Education. ACGME common program requirements. Section IV.A.5. ACGME competencies. http://www.acgme.org/Portals/0/PFAssets/ProgramRequirements/ CPRs_2017-07-01.pdf. Revised July 1, 2017. Accessed July 5, 2018

Action research

• Research in action, rather than research about action • Participative • Concurrent with action • A sequence of events and an approach to problem solving Coghlan D. Action research in the academy: why and whither? Reflections on the changing nature of research. Ir J Manage. 2004;25(2):1–10

Apartheid

1: racial segregation; specifically: a former policy of segregation and political and economic discrimination against non-European groups in the Republic of South Africa 2: separation, segregation · cultural apartheid · gender apartheid Merriam-Webster. Apartheid. https://www.merriam-webster.com/ dictionary/apartheid. Updated July 1, 2018. Accessed July 5, 2018

PGCH_ch25_AppC_431-442.indd 431

8/6/18 8:42 AM

432 Appendix C: Glossary

Appreciation

[A] bonus to the minor once research is completed to thank him or her. Centre of Genomics and Policy (CGP), Maternal Infant Child and Youth Research Network (MICYRN). Best Practices for Health Research Involving Children and Adolescents. 2012. http://www.genomicsandpolicy.org/en/ best-practices-2012. Accessed July 23, 2018

Assent

A child’s affirmative agreement to participate in research. Mere failure to object should not, absent affirmative agreement, be construed as assent. National Institutes of Health, US Department of Health and Human Services. Research involving children. https://humansubjects.nih.gov/ children1. Accessed July 5, 2018

Attachment theory

Attachment is one specific aspect of the relationship between a child and a parent with its purpose being to make a child safe, secure and protected.…Attachment is where the child uses the primary caregiver as a secure base from which to explore and, when necessary, as a haven of safety and a source of comfort. Benoit D. Infant-parent attachment: definition, types, antecedents, measurement and outcome. Paediatr Child Health. 2004;9(8):541–545

Barefoot doctor movement

[C]are that is accessible to the whole community, the involvement of the community as a key element, the limits of curative medicine and the need to integrate preventive and promotive approaches into health care systems. Tollman S. Community oriented primary care: origins, evolution, applications. Soc Sci Med. 1991;32(6):633–642

Biomarker

The term “biomarker,” a portmanteau of “biological marker,” refers to a broad subcategory of medical signs—that is, objective indications of medical state observed from outside the patient—which can be measured accurately and reproducibly. Strimbu K, Tavel JA. What are biomarkers? Curr Opin HIV AIDS. 2010;5(6):463–466

Cognitive behavioral therapy

[Cognitive behavioral therapy] places an emphasis on helping individuals learn to be their own therapists. Through exercises in the session as well as “homework” exercises outside of sessions, patients/clients are helped to develop coping skills, whereby they can learn to change their own thinking, problematic emotions and behavior. American Psychological Association. What is cognitive behavioral therapy? http://www.apa.org/ptsd-guideline/patients-and-families/ cognitive-behavioral.aspx. Accessed July 20, 2018

Collective brainstorming

Once the right mix of stakeholders has convened…they anticipate and hypothesize all possible ramifications of the intervention…while also thinking through the many interactions among the sub-systems. de Savigny D, Adam T, eds. Systems Thinking for Health Systems Strengthening. Geneva, Switzerland: Alliance for Health Policy and Systems Research, World Health Organization; 2009. http://www.who.int/ alliance-hpsr/resources/9789241563895/en. Accessed July 5, 2018

PGCH_ch25_AppC_431-442.indd 432

8/6/18 8:42 AM

433 Appendix C: Glossary

Community-­ oriented primary care

[A] strategy whereby elements of primary health care and of community medicine are systematically developed and brought together in a coordinated practice. Abramson JH, Kark SL. Community oriented primary care: meaning and scope. In: Institute of Medicine Division of Health Care Services. ­Community Oriented Primary Care: New Directions for Health Services Delivery. Connor E, Mullan F, eds. Washington, DC: National Academies Press; 1983. https://www.ncbi.nlm.nih.gov/books/NBK234632. Accessed July 20, 2018

Community ­pediatrics

[T]he practice of promoting and integrating the positive social, cultural, and environmental influences on children’s health as well as addressing potential negative effects that deter optimal child health and development within a community. American Academy of Pediatrics Council on Community Pediatrics. Community pediatrics: navigating the intersection of medicine, public health, and social determinants of children’s health. Pediatrics. 2013;131(3):623–628. Reaffirmed October 2016

Compensation

[C]ompensates the parents and the minor for their time and ­inconvenience. Centre of Genomics and Policy (CGP), Maternal Infant Child and Youth Research Network (MICYRN). Best Practices for Health Research Involving Children and Adolescents. 2012. http://www.genomicsandpolicy.org/en/ best-practices-2012. Accessed July 23, 2018

Competency-­ based learning

Transitioning away from seat time, in favor of a structure that creates flexibility, allows students to progress as they demonstrate mastery of academic content, regardless of time, place, or pace of learning. ­Competency-based strategies provide flexibility in the way that credit can be earned or awarded, and provide students with personalized learning opportunities. US Department of Education Office of Innovation and Learning. ­Competency-based learning or personalized learning. https://innovation.ed.gov/competency-based-learning-orpersonalized-learning. Accessed July 5, 2018

Consent

Informed consent is not satisfied by merely obtaining a signature on a form but is a process of dialog with a patient about a planned course of action. Katz AL, Webb SA; American Academy of Pediatrics Committee on Bioethics. Informed consent in decision-making in pediatric practice. Pediatrics. 2016;138(2):e20161485

Cultural ­competence

Cultural competence means to be respectful and responsive to the health beliefs and practices—and cultural and linguistic needs—of diverse population groups. Substance Abuse and Mental Health Services Administration. Cultural competence. https://www.samhsa.gov/capt/applying-strategicprevention/cultural-competence. Updated November 10, 2016. ­Accessed July 5, 2018

PGCH_ch25_AppC_431-442.indd 433

8/6/18 8:42 AM

434 Appendix C: Glossary

Demand-based perspective (­approach)

Demand estimates are based on a country’s economic growth and the increase in health-care spending that results from it, which primarily goes towards worker salaries. Scheffler RM, Liu JX, Kinfu Y, Dal Poz MR. Forecasting the global shortage of physicians: an economic- and needs-based approach. Bull World Health Organ. 2008;86(7):516–523B

Dependency ratio

Demographic dependency ratios are used as approximate indicators of the relative sizes of the nonworking-age and working-age populations. Mirkin B, Weinberger MB. The demography of population ageing. http://www.un.org/en/development/desa/population/events/pdf/­ expert/1/weinbergermirkin.pdf. Accessed July 5, 2018

Developing nation There is no established convention for the designation of “developed” and “developing” countries or areas in the United Nations system. This section includes countries and territories classified according to three categories of development: developing economies, transition economies and developed economies. Each category is further divided by geographical region. United Nations Conference on Trade and Development. Classifications. Country classification. http://unctadstat.unctad.org/EN/Classifications. html. Updated June 2018. Accessed July 5, 2018 United Nations. Statistical annex. Country classifications. In: World Economic Situation and Prospects 2018. New York, NY: United Nations; 2017:137–179. https://www.un.org/development/desa/dpad/wp-­ content/uploads/sites/45/WESP2018_Annex.pdf. Accessed July 5, 2018 There are no [World Trade Organization] definitions of “developed” and “developing” countries. Members announce for themselves whether they are “developed” or “developing” countries. However, other members can challenge the decision of a member to make use of provisions available to developing countries. World Trade Organization. Development: definition. Who are the developing countries in the WTO? https://www.wto.org/english/tratop_e/ devel_e/d1who_e.htm. Accessed July 5, 2018 Distributive justice A set of principles that provide “moral guidance for political processes and structures that affect the distribution of economic benefits and burdens within societies.” It is generally thought to be difficult, if not impossible, to distribute health. However, there are a number of factors that may be considered relevant to the just distribution of health (including income, wealth, utility), the number of possible persons involved (individuals or groups), and differences in how the distribution should be made (equality, maximization, etc.). World Health Organization Global Network of WHO Collaborating Centres for Bioethics. Global Health Ethics: Key Issues. Geneva; Switzerland: World Health Organization; 2015. http://apps.who.int/iris/ bitstream/10665/164576/1/9789240694033_eng.pdf. Accessed July 5, 2018

PGCH_ch25_AppC_431-442.indd 434

8/6/18 8:42 AM

435 Appendix C: Glossary

Early Child ­Development Index

Aims to measure the developmental status of children within four domains: literacy-numeracy, physical, and social-emotional development United Nations Children’s Fund. Early childhood. ECD monitoring. https://www.unicef.org/earlychildhood/index_69846.html. Updated July 16, 2013. Accessed July 5, 2018

Emerging market

S&P Dow Jones Indices. Dow Jones global indices: methodology. http://us.spindices.com/documents/methodologies/methodology-djglobal-indices.pdf. Published June 2018. Accessed July 5, 2018 For methodology: S&P Dow Jones Indices. Country classification: methodology. https://us.spindices.com/documents/index-policies/ methodology-country-classification.pdf. Published October 2016. Accessed July 5, 2018 Epidemiologic transition

The epidemiologic transition describes changing patterns of population age distributions, mortality, fertility, life expectancy, and causes of death. McKeown RE. The epidemiologic transition: changing patterns of mortality and population dynamics. Am J Lifestyle Med. 2009;3(1 Suppl): 19S–26S

Epigenetics

The structural adaptation of chromosomal regions so as to register, signal or perpetuate altered activity states. Bird A. Perceptions of epigenetics. Nature. 2007;447(7143):396–398

Feminism

1: the theory of the political, economic, and social equality of the sexes 2: organized activity on behalf of women’s rights and interests Merriam-Webster. Feminism. https://www.merriam-webster.com/ dictionary/feminism. Updated July 15, 2018. Accessed July 24, 2018

Global burden of disease

A consistent and comparative description of the burden of diseases and injuries and the risk factors that cause them is an important input to health decision-making and planning processes. The first GBD 1990 study quantified the health effects of more than 100 diseases and injuries for eight regions of the world in 1990. It generated comprehensive and internally consistent estimates of mortality and morbidity by age, sex and region. The study also introduced a new metric – the disability-adjusted life-year (DALY) – as a single measure to quantify the burden of diseases, injuries and risk factors. The DALY is based on years of life lost from premature death and years of life lived in less than full health. World Health Organization. About the Global Burden of Disease (GBD) project. http://www.who.int/healthinfo/global_burden_disease/ about/en. Accessed July 23, 2018

PGCH_ch25_AppC_431-442.indd 435

8/6/18 8:42 AM

436 Appendix C: Glossary

Global health

[A]n area for study, research, and practice that places a priority on improving health and achieving equity in health for all people worldwide. Global health emphasises transnational health issues, determinants, and solutions; involves many disciplines within and beyond the health sciences and promotes interdisciplinary collaboration; and is a synthesis of population-based prevention with individual-level clinical care. Koplan JP, Bond TC, Merson MH, et al; Consortium of Universities for Global Health Executive Board. Towards a common definition of global health. Lancet. 2009;373(9679):1993–1995

Human ­Development Index

The [Human Development Index] was created to emphasize that people and their capabilities should be the ultimate criteria for assessing the development of a country, not economic growth alone.…The Human Development Index (HDI) is a summary measure of average achievement in key dimensions of human development: a long and healthy life, being knowledgeable and have a decent standard of living. The HDI is the geometric mean of normalized indices for each of the three dimensions. United Nations Development Programme. Human development reports. Human Development Index. http://hdr.undp.org/en/content/ human-development-index-hdi. Accessed July 5, 2018

Hypothesis ­falsification

In the accepted scientific method, the falsity of the experimental hypothesis (H1) is expressed in the form of the null hypothesis (H0) and it is the latter that is subjected to scrutiny using probability-based statistics….If a prediction of a theory withstood falsification, it remained useful. Wilkinson M. Testing the null hypothesis: the forgotten legacy of Karl Popper? J Sports Sci. 2013;31(9):919–920

Implementation science/research

Implementation science is the study of methods to promote the adoption and integration of evidence-based practices, interventions and policies into routine health care and public health settings. Implementation research plays an important role in identifying barriers to, and enablers of, effective global health programming and policymaking, and leveraging that knowledge to develop evidence-based innovations in effective delivery approaches. National Institutes of Health Fogarty International Center. Implementation science information and resources. https://www.fic.nih.gov/ researchtopics/pages/implementationscience.aspx. Updated May 2018. Accessed July 5, 2018

Incentive

Encourages the minor to participate in research; examples: draw, lottery Centre of Genomics and Policy (CGP), Maternal Infant Child and Youth Research Network (MICYRN). Best Practices for Health Research Involving Children and Adolescents, 2012. http://www.genomicsandpolicy.org/en/ best-practices-2012. Accessed July 23, 2018

PGCH_ch25_AppC_431-442.indd 436

8/6/18 8:42 AM

437 Appendix C: Glossary

International health

For decades, it was the term used for health work abroad, with a geographic focus on developing countries and often with a content of infectious and tropical diseases, water and sanitation, malnutrition, and maternal and child health. Koplan JP, Bond TC, Merson MH, et al; Consortium of Universities for Global Health Executive Board. Towards a common definition of global health. Lancet. 2009;373(9679):1993–1995

Interprofessional education

Interprofessional education occurs when students from two or more professions learn about, from and with each other to enable effective collaboration and improve health outcomes. Once students understand how to work interprofessionally, they are ready to enter the workplace as a member of the collaborative practice team. This is a key step in moving health systems from fragmentation to a position of strength. Health Professions Networks Nursing and Midwifery Human Resources for Health. Framework for Action on Interprofessional Education & Collaborative Practice. Geneva, Switzerland: World Health Organization; 2010. http://www.who.int/hrh/resources/framework_action/en. Accessed July 5, 2018

Intervention coverage

People receiving the intervention or service among those who need it. It requires a fairly well-defined intervention that can be measured and precise measurement of the population need for the intervention. Boerma T, AbouZahr C, Evans D, Evans T. Monitoring intervention coverage in the context of universal health coverage. PLoS Med. 2014;11(9):e1001728

Low-income, lower-middle–­ income, upper-­ middle–income, and high-income countries

[World Health Organization] Member States are grouped into 4 income groups (low, lower-middle, upper-middle, and high) based on the World Bank list of analytical income classification of economies for the fiscal year, which is based on the Atlas gross national income per capita estimates (released July annually). World Health Organization. Health statistics and information systems. Definition of regional groupings. http://www.who.int/healthinfo/­ global_burden_disease/definition_regions/en. Accessed July 5, 2018 Geographic classification tables can be found in the following resources: The World Bank. World Bank country and lending groups. https://datahelpdesk.worldbank.org/knowledgebase/articles/ 906519-world-bank-country-and-lending-groups. Accessed July 5, 2018 The World Bank. How does the World Bank classify countries? https://datahelpdesk.worldbank.org/knowledgebase/articles/378834how-does-the-world-bank-classify-countries. Accessed July 5, 2018

Megacity

Cities with 10 million inhabitants or more United Nations, Department of Economic and Social Affairs, Population Division. The World’s Cities in 2016—Data Booklet (ST/ESA/SER.A/392). New York, NY: United Nations; 2016. http://www.un.org/en/ development/desa/population/publications/pdf/urbanization/the_ worlds_cities_in_2016_data_booklet.pdf. Accessed July 5, 2018

PGCH_ch25_AppC_431-442.indd 437

8/6/18 8:42 AM

438 Appendix C: Glossary

Molecular ­epidemiology

Molecular epidemiology, an area of epidemiology that is somewhat ambiguous, encompasses [utilization] of biomarkers and genetics as tools to define both exposures (factors that are inherited) and outcomes (factors that are acquired). Slattery ML. The science and art of molecular epidemiology. J Epidemiol Community Health. 2002;56(10):728–729

Needs perspective Needs-based estimates use an exogenous health benchmark to judge (needs-based the adequacy of the number of physicians required to meet MDG approach) targets. [For example, in the cited article below, the needs-based target was 80% coverage of live births by a skilled attendant.] Scheffler RM, Liu JX, Kinfu Y, Dal Poz MR. Forecasting the global shortage of physicians: an economic- and needs-based approach. Bull World Health Organ. 2008;86(7):516B–523B Participatory research

[P]articipatory research focuses on a process of sequential reflection and action, carried out with and by local people rather than on them. Local knowledge and perspectives are not only acknowledged but form the basis for research and planning. Cornwall A, Jewkes R. What is participatory research? Soc Sci Med. 1995;41(12):1667–1676

Permission

The agreement of parent(s) or guardian to the participation of their child or ward in research National Institutes of Health, US Department of Health and Human Services. Research involving children. https://humansubjects.nih.gov/ children1. Accessed July 5, 2018

Postcolonialism

A theoretical approach in various disciplines that is concerned with the lasting impact of colonization in former colonies Oxford Living Dictionaries. Postcolonialism. https:// en.oxforddictionaries.com/definition/postcolonialism. Accessed July 5, 2018

Post-structuralism

A movement or theory (such as deconstruction) that views the descriptive premise of structuralism as contradicted by reliance on borrowed concepts or differential terms and categories and sees inquiry as inevitably shaped by discursive and interpretive practices Merriam-Webster. Post-structuralism. https://www.merriam-webster. com/dictionary/post-structuralism. Accessed July 5, 2018

Practice-based learning

[Practice-based learning and improvement] was likened to residents’ holding up a mirror to document, assess, and improve their practice. Ziegelstein RC, Fiebach NH. “The mirror” and “the village”: a new method for teaching practice-based learning and improvement and systems-based practice. Acad Med. 2004;79(1):83–88

PGCH_ch25_AppC_431-442.indd 438

8/6/18 8:42 AM

439 Appendix C: Glossary

Psychosocial stimulation (child development)

Refers to the extent that the environment provides physical stimulation through sensory input (e.g., visual, auditory, tactile), as well as ­emotional stimulation provided through an affectionate caregiver-child bond. World Health Organization. Mental Health and Psychosocial Well-Being among Children in Severe Food Shortage Situations. Geneva, Switzerland: World Health Organization; 2006. http://www.who.int/mental_health/ mental_health_food_shortage_children2.pdf. Accessed July 5, 2018

Reimbursement

[C]ompensates the parents and the minor for expenses incurred by their participation, such as transportation, meals and lodging. Centre of Genomics and Policy (CGP), Maternal Infant Child and Youth Research Network (MICYRN). Best Practices for Health Research Involving Children and Adolescents. 2012. http://www.genomicsandpolicy.org/en/ best-practices-2012. Accessed July 23, 2018

Scaffolding (verbal)

[L]anguage input that supports the child’s learning of strategies for problem solving, such as making associations between objects and their actions… Landry SH, Miller-Loncar CL, Smith KE, Swank PR. The role of early parenting in children’s development of executive processes. Dev Neuropsychol. 2002;21(1):15–41

Sensitivity

[T]he ability of a test, case definition, or surveillance system to identify true cases; the proportion of people with a health condition (or the proportion of outbreaks) that are identified by a screening test or case definition (or surveillance system) Centers for Disease Control and Prevention. Glossary. In: Principles of Epidemiology in Public Health Practice: An Introduction to Applied Epidemiology and Biostatistics. 3rd ed. Atlanta, GA: Centers for Disease Control and Prevention; 2006. https://www.cdc.gov/OPHSS/CSELS/DSEPD/SS1978/ Glossary.html#S. Updated July 2, 2014. Accessed July 5, 2018

Social ­determinants of health

The social determinants of health are the conditions in which people are born, grow, live, work and age. These circumstances are shaped by the distribution of money, power and resources at global, national and local levels. The social determinants of health are mostly responsible for health inequities - the unfair and avoidable differences in health status seen within and between countries. World Health Organization. Social determinants of health. About social determinants of health. http://www.who.int/social_determinants/ sdh_definition/en. Accessed July 5, 2018

Specificity

[T]he ability or a test, case definition, or surveillance system to exclude persons without the health condition of interest; the proportion of persons without a health condition that are correctly identified as such by a screening test, case definition, or surveillance system Centers for Disease Control and Prevention. Glossary. In: Principles of Epidemiology in Public Health Practice: An Introduction to Applied Epidemiology and Biostatistics. 3rd ed. Atlanta, GA: Centers for Disease Control and Prevention; 2006. https://www.cdc.gov/OPHSS/CSELS/DSEPD/SS1978/ Glossary.html#S. Updated July 2, 2014. Accessed July 5, 2018

PGCH_ch25_AppC_431-442.indd 439

8/6/18 8:42 AM

440 Appendix C: Glossary

Stunting

Moderate and severe—below minus two standard deviations from median height for age of reference population United Nations Children’s Fund. Definitions: Nutrition. https://www. unicef.org/infobycountry/stats_popup2.html. Accessed July 5, 2018

Subclinical toxicity The term “subclinical toxicity” denotes the concept that relatively low dose exposure to certain chemicals, lead among them, may cause harmful effects to health that are not evident with a standard clinical examination. Landrigan PJ. Toxicity of lead at low dose. Br J Ind Med. 1989;46(9): 593–596 Sustainable ­Development Goals

The 17 Sustainable Development Goals and 169 targets which we are announcing today demonstrate the scale and ambition of this new universal Agenda. They seek to build on the Millennium Development Goals and complete what these did not achieve. They seek to realize the human rights of all and to achieve gender equality and the empowerment of all women and girls. They are integrated and indivisible and balance the three dimensions of sustainable development: the e­ conomic, social and environmental. The Goals and targets will stimulate action over the next fifteen years in areas of critical importance for humanity and the planet. United Nations. Sustainable development knowledge platform. Transforming our world: the 2030 Agenda for Sustainable Development. https://sustainabledevelopment.un.org/post2015/ transformingourworld. Accessed July 5, 2018

Systems-based practice

Competency in [systems-based practice] requires that physicians understand how patient care relates to the health care system as a whole and how to use the system to improve the quality and safety of patient care. Johnson JK, Miller SH, Horowitz SD. Systems-based practice: improving the safety and quality of patient care by recognizing and improving the systems in which we work. In: Henriksen K, Battles JB, Keyes MA, et al, eds. Advances in Patient Safety: New Directions and Alternative ­Approaches. Volume 2: Culture and Redesign. Rockville, MD: Agency for Healthcare Research and Quality; 2008. https://www.ncbi.nlm.nih.gov/ books/NBK43731. Accessed July 23, 2018

Team-based learning

Team-Based Learning is an evidence based collaborative learning teaching strategy designed around units of instruction, known as “modules,” that are taught in a three-step cycle: preparation, in-class readiness assurance testing, and application-focused exercise. Team-Based Learning Collaborative. Overview. http://www. teambasedlearning.org/definition. Accessed July 5, 2018

Transformative learning

Transformative learning is concerned with altering frames of reference through critical reflection of both habits of mind and points of view. Moore J. Is higher education ready for transformative learning? A question explored in the study of sustainability. J Transformative Educ. 2005;3(1):76–91

PGCH_ch25_AppC_431-442.indd 440

8/6/18 8:42 AM

441 Appendix C: Glossary

Translational research

Translational research includes two areas of translation. One is the process of applying discoveries generated during research in the laboratory, and in preclinical studies, to the development of trials and studies in humans. The second area of translation concerns research aimed at enhancing the adoption of best practices in the community. Cost-­effectiveness of prevention and treatment strategies is also an important part of translational science. National Institutes of Health. Grants & Funding. Glossary & Acronym List. https://grants.nih.gov/grants/glossary.htm#T. Accessed July 23, 2018

Wasting

Moderate and severe–below minus two standard deviations from median weight for height of reference population United Nations Children’s Fund. Definitions: Nutrition. https://www. unicef.org/infobycountry/stats_popup2.html. Accessed July 5, 2018

Windshield survey (community snapshot)

Ride through the neighborhood and write down what you see that could be a community asset. Look for churches, schools, childcare facilities, and the like. Take notes and photos. Research the names of key personnel such as superintendents, pastors, and industry leaders. If possible do this drive-by with your community mentor and discuss what is available to community members. Try to see what is or is not available to children. Put together a list of what community members see every day. Gold A. Sample project: a windshield survey or community snapshot. In: American Academy of Pediatrics Community Pediatrics Training Initiative. Community-based Resident Projects Toolkit: A Guide to Partnering With Communities to Improve Child Health. Elk Grove Village, IL: American Academy of Pediatrics; 2005:21. http://www.communityforchildren.org/ sites/default/files/AAP_Advocacy_Toolkit.pdf. Accessed July 20, 2018

PGCH_ch25_AppC_431-442.indd 441

8/6/18 8:42 AM

PGCH_ch25_AppC_431-442.indd 442

8/6/18 8:42 AM

443 Index

INDEX Page numbers followed by an f, a t, or a b denote a figure, a table, or a box, respectively. A AAMC. See Association of American Medical Colleges (AAMC) AAP. See American Academy of Pediatrics (AAP) ABP. See American Board of Pediatrics (ABP) ABP Global Health Task Force, 31 Abuse, child. See Child maltreatment Academic Pediatric Association (APA), 9, 99, 107, 169 on communication competency, 143b Global Health Special Interest Group, 387 Global Health Task Force, 9, 116, 118, 121, 122, 135 on roles/responsibilities competencies, 140b on special considerations competency, 153b on team building and teamwork competencies, 148b on values/ethics competencies, 136b Accessibility of care, 54 Accreditation, definition of, 159, 164 Accreditation Council for Graduate Medical Education (ACGME), 7, 106, 134, 164–165 Acculturation and parenting in cross-cultural pediatric care, 190–192 ACE. See Adverse Childhood Experiences (ACE) ACGME. See Accreditation Council for Graduate Medical Education ACLS. See Advanced Cardiac Life Support (ACLS) Action research, 278 Administrative competencies context of, 104–108 defined, 103 gaps and opportunities in, 112 in the global health space, 108–109 partnerships, collective effect, and sustainability in Haiti, 110–112 Adolescent Health and Commission on Adolescent Health and Well-Being action plan, 48b Adolescents causes of mortality in, 64 GHESKIO services for, 331–332 Advanced Cardiac Life Support (ACLS), 203 Advanced Pediatric Life Support (APLS), 203 Adverse Childhood Experiences (ACE), 180, 222, 229–230 Advocacy. See Persistence in advocacy Agency for Healthcare Research and Quality (AHRQ), 75, 77, 89 Ages & Stages Questionnaires, 234 AHOPCA. See Asociación de HematoOncología Pediátrica de Centro América (AHOPCA)

PGCH_ch26_IDX_443-456.indd 443

AHRQ. See Agency for Healthcare Research and Quality (AHRQ) AIDS. See HIV infection AIDS Clinical Trials Group, 325 AIDS Healthcare Foundation, 325 Alaska Native people, 125–128 Alden, Errol, 384 Alliance for Safe Children (TASC), 351 American Academy of Pediatrics (AAP), 99, 107–108, 122, 135 advocacy and, 170–174 agenda for global child health, 381–388 American Board of Pediatrics and, 31 on competency-based education, 116 consensus guidelines for international experience, 28 Convention on the Rights of the Child and, 169, 171–172 on cultural competency training, 196 definition of community pediatrics, 4 founding of, 383 gaps, environmental scan, and organizational perspective of the future of the health of children globally and, 388 global education resources on neonatal resuscitation, 384–385 global goals and commitments of, 385–387 global health training and faculty development by, 387–388 Julius B. Richmond Center of Excellence, 386 Section on International Child Health (SOICH), 30, 385 Section on International Medical Graduates, 30 American Board of Medical Specialties, 134 American Board of Pediatrics (ABP), 31, 108, 165 Global Health Task Force, 387–388 American Cancer Society, 405 Anne E. Dyson Child Advocacy Award, 169 Anthropology of childhood, 232 Antiretroviral treatment (ART), 224–225, 327 APA. See Academic Pediatric Association (APA) APLS. See Advanced Pediatric Life Support (APLS) Asbestos, 266–267 Asociación de Hemato-Oncología Pediátrica de Centro América (AHOPCA), 406 Asset-based community development, 172–174 Association Médicale Haitienne (Haitian Medical Society), 325 Association of American Medical Colleges (AAMC), 27, 187 Cultural Competence Education, 194 Association of Pediatric Program Directors, 99, 122

8/23/18 7:15 AM

444 Index

Association of Schools and Programs of Public Health (ASPH), 116 CDC Allan Rosenfield Global Health Fellowship Program, 76 Asthma, 260 Authentic Leadership, 161 Autism spectrum disorder, 260 B Bach, Jean-François, 396 Bakhshi, Sameer, 406 Bane Report, 26 Barriers to effective leadership, 165 Barriers to preventing child maltreatment, 373, 376t, 377 Basel Convention on the Control of Transboundary Movements of Hazardous Wastes and Their Disposal, 270 Beecher, Henry K., 301 BELIEF model, 194 Beneficence, 305–306 Beutler, Ernest, 395, 396 Bias, unconscious, 192–193 Bill and Melinda Gates Foundation, 29 Bird, Michael, 125 Birth defects, 260 Bloomberg Philanthropies, 355 Boadiba, 176 Book sharing and early literacy, 240–241 Boston Basics, 238, 239b Boston Children’s Hospital, 382, 395 Global Pediatric Fellowship Program, 77 Brain cancer, 261 Brain development, 221–222 book sharing and early literacy for, 240–241 neurodevelopmental disorders and environmental health in, 260 “Brain drain,” 34 Brainstorming, collective, 309 Brazelton Neonatal Behavioral Assessment Scale, 233 Broken Promises: Evaluating the Native American Health Care System, 125–128 Building Regional Alliances to Nurture Child Health (BRANCH), 89–91 Burden of injury, 342–344 Burn-related injuries, 345, 354, 355 C CAB. See Community advisory board (CAB) Canadian Coalition for Global Health Research, 29, 301 Canadian Paediatric Society, 99, 116, 122 Cancers concurrent commitment to clinical/ translational research on, 394–401 current best practices in treating, 401–404 environmental scan on, 404–407

PGCH_ch26_IDX_443-456.indd 444

history/context and personal perspective on, 393–394 HPV-related, 328 leukemia, 261–262, 394–404 what needs to happen next with research and treatment for, 407–409 Capacity building, 293–294, 405 Care for Child Development cards, 236–238 Carpenter, Christopher, 176 Castle, William, 395 CATCH. See Community Access to Child Health (CATCH) program Causes of child mortality, 45–47 CDC. See Centers for Disease Control and Prevention (CDC) Census data, 68 Centers for Disease Control and Prevention (CDC), 67, 68, 74, 76 on burn-related injuries, 355 GHESKIO and, 325 Healthy People 2020, 188–189 Central Harlem, NY, United States, best practices example, 10–12 Centre for Injury Prevention and Research, Bangladesh (CIPRB), 351–352 Certification, definition of, 159, 164 Charcoal production and air quality, 145–147 Charity Navigator, 108 CharityWatch, 108 CHD. See Congenital heart disease (CHD) in Port-au-Prince, Haiti Chemicals. See Toxic chemicals Child Health and Nutrition Research Initiative (CHNRI), 55–56, 305 Child Injury Prevention Alliance, 349 Child maltreatment, 359–360, 379–380 barriers to preventing, 373, 376t, 377 defining, 361–364 funding for prevention and treatment programs for, 377 investigations, substantiation, out-of-home placement, and prosecution for, 368 involvement by community sectors in addressing, 377–379 legal responses to child sexual exploitation, 368, 369t national policies addressing, 365, 366t reporting systems for, 365, 368 services to address, 369–372 specific policy responses to, 365, 367t, 368–372 strategies to prevent, 372–373, 374–375t trends in the incidence of, 364 Children’s Hospital of Michigan, Detroit, 395–396 Children’s Hospital of Philadelphia David N. Pincus Global Health Fellowship Program, 77 Children’s rights and research ethics, 303–304 Child sexual abuse, 90–91

8/23/18 7:15 AM

445 Index

Child sexual exploitation, 368, 369t China, HIV disclosure in. See Interactive Communication with Openness, Passion, and Empowerment (ICOPE) project CHNRI. See Child Health and Nutrition Research Initiative (CHNRI) Cholera, 329 CHWs. See Community health workers (CHWs) Civil Rights Act, 1964, 193 CLAS. See Culturally and Linguistically Appropriate Services (CLAS) Climate change, 256, 268. See also Environmental health Clinical and translational research spectrum, 6–7 Clinical competencies, 133 clinical training in global health and, 134–135 communication, 99, 100, 123, 143–147 roles and responsibilities, 99, 100, 123, 139–142 special consideration, 99, 101, 152–155 team building and teamwork, 9, 99, 101, 123, 147–151 values and ethics, 99–100, 122, 135–139 Clinical trial networks (CTNs), 401–402 Clinic and hospital medical records, 68 Co-learning and training, 289–290 Coliman, Jesse, 176 Collaborative problem-solving, 153–155 Collective brainstorming, 309 Collins, Francis, 30 Communications competency in, 99, 100, 123, 143–147 measuring and adjusting cross-cultural, 197–198 models of cross-cultural, 194–196 unconscious bias in cross-cultural, 192–193 Community Access to Child Health (CATCH) program, 169, 171, 385 Community advisory board (CAB), 324–325 Community-based participatory research (CBPR), 5, 130–131, 277 behavioral interventions and, 281 benefits of, 279 conceptual model of, 279–282 group dynamics in, 281 ICOPE project process guided by, 285–294 parental HIV disclosure project in China, 282–294 as research orientation, 278–279 Community health workers (CHWs), 54 addressing developmental issues, 235–236 developmental screening by, 235 maternal mental health and, 242 Community-oriented primary care, definition of, 4–5 Community pediatrics best practices in, 10–16 competency-based education in, 6 definition of, 4

PGCH_ch26_IDX_443-456.indd 445

environmental scan and research and education gaps in, 17 importance of cultural context and ethnography to, 9–10 integration in, 5–6 interprofessional education in, 8–9 necessary components and theories in support of, 5 origins of, 383 translational research and community effect in, 6–8 Community Pediatrics Training Initiative, 169 Community research, 5 Compass, leadership, 162 Competencies, 104–105t administrative, 103–113 clinical. See Clinical competencies communication, 99, 100, 123, 143–147 competency-based education and, 6, 106–107, 115–118 in the global health space, 108–109 identifications and definitions of, 99, 117–118 research, 121–131 roles/responsibilities, 99, 100, 123, 139–142 special considerations, 99, 101, 152–155 team building and teamwork, 9, 99, 101, 123, 147–151 universal, common to all areas of global health, 99–101 values/ethics, 99–100, 122, 135–139 Competency-based education, 6, 106–107, 115–118 Concern for welfare, 302 Conflict and humanitarian settings, 52, 64, 230 Conflicts of interest (COI), 314 Congenital heart disease (CHD) in Port-auPrince, Haiti, 12–16 Consent/assent, 307–309 Consortium of Universities for Global Health (CUGH), 29, 106 Convention on the Rights of the Child, 169, 171–172, 303–304, 341 Cooley, Thomas, 395 Cooper, Louis, 384 Cooper, Max, 396 Core Humanitarian Standard, 108 Council for International Organizations of Medical Sciences, 302 Council of State and Territorial Epidemiologists Applied Epidemiology Fellowship, 76 Crick, Francis, 393–394 Cross-cultural communications measuring and adjusting, 197–198 models of, 194–196 unconscious bias in, 192–193 Cross-cultural efficacy, 195 Cross-cultural training, 183 acculturation and parenting in cross-cultural pediatric care and, 190–192

8/23/18 7:15 AM

446 Index

Cross-cultural training (continued) cultural competency and social determinants and, 187–190 environmental scan of, 196–197 interpreters of language and culture and, 193–194 introduction to demographic changes and, 185–187 measuring and adjusting cross-cultural communication, 197–198 models of cross-cultural communication and best practices for, 194–196 unconscious bias in cross-cultural communications and, 192–193 CTN. See Clinical trial networks (CTNs) CUGH. See Consortium of Universities for Global Health (CUGH) Cultural competence, 35, 187–190, 196 early childhood development and, 231–232 Cultural Competence Education, 194 Cultural context and ethnography, 9–10 Cultural humility, 196 Culturally and Linguistically Appropriate Services (CLAS), 193–194 Culture definition of, 187 developmental norms and, 233 interpreters of language and, 193–194 leadership and, 163 mode of, 187–188 special role of, in early childhood development, 231–233 Culture of Hate: Who Are We?, 173 Curious Learning system, 241 D DALYs. See Disability-adjusted life years (DALYs) Data, disease. See Disease surveillance Data-based model for change, 11 Declaration of Helsinki, 301–302 Demographic and Health Surveys, 67–68 Denver Developmental Screening Test, 233 Depression, maternal, 228–229, 242–243 Developmental delay and disability addressed in low- and middle-income countries, 235–243 identification of, 234–235 prevalence of, 221 Development matrix for global child health, 81, 82f Building Regional Alliances to Nurture Child Health (BRANCH), 89–91 environmental scanning in, 94 Fetal Heart Monitor Project, Uganda, 84–85 history and context of, 83 Integrated Toolkit to Save Newborn Lives, Pakistan and Kenya, 85–86 Sprinkles Global Health Initiative, 88–89

PGCH_ch26_IDX_443-456.indd 446

Toolkit for Minimizing the Effect of Procedural Pain in Neonates, Ghana, 86–87 understanding the environmental burden of disease in, 92–94 University of Toronto International Health Program, 84 vitamin D supplementation, Bangladesh, 87–88 Diarrheal diseases, 226 GHESKIO and, 326 stunted growth and, 227 Digital technology for child development, 241 Disability addressed in low- and middle-income countries, 235–243 definition of, 221 identification of, 234–235 prevalence of, 221 Disability-adjusted life years (DALYs), 64, 67, 342, 345, 405 Disease frequency, 66 Disease registries, 68 Disease severity, 66–67 Disease surveillance approaches to optimizing existing data systems in, 69–72 basic epidemiological concepts in, 66–67 data sources for, 67–69 health indicators in, 72–73, 74t meaningful use of data in, 73–76 training needs in, 76–77 triangulation of data in, 72, 73f Dissonant acculturation, 191 Distributive justice, 306 Domestic violence, 229–230 Double burden of disease, 266 Drowning, 344–345, 351–352 Duran, B., 278 Duvalier regimes, Haiti, 329–330 Dyson Initiative, 173 E Early childhood development, 219 action plans for, 48b addressing inequities in, 55 book sharing and early literacy for, 240–241 brain development and perturbations and, 221–222 culture and norms of, 233 current best practices in, 233–235 digital technology for, 241 environmental toxins and, 230 exposure to violence and, 229–230 family income and, 227 future directions for addressing issues of, 235–243 history/context of, 221–222 inadequate nutrition and, 226–227 infections and, 224–226

8/23/18 7:15 AM

447 Index

maternal mental health and, 228–229, 242–243 parenting interventions in, 238–239 parenting lacking appropriate skills and knowledge and, 227–228 prevalence of developmental delay and disability and, 221 protective factors and resilience in, 230–233 risk factors in, 222–230 universal interventions in, 236–238 Economic imperialism, 329 Education AAP global resources, 384–385 attending to multiple factors in future, 38 co-learning and training, 289–290 competency-based, 6, 106–107, 115–118 cross-cultural training, 183–198 cultural competence in, 35 gaps in research and, 17, 213–214 graduate medical education (GME) programs, 25–27 injury prevention through, 347 interprofessional, 8–9 leadership and, 159–166 persistence in advocacy, 169–181 simulation-based training, 201–215 on use of meaningful data in global child health, 76–77 Electrical and electronic waste, 267 Emerging markets, 24 refocusing on international health within, 27–28 Emic knowledge, 9–10 Ending Preventable Child Deaths From Pneumonia and Diarrhoea by 2025: The Integrated Global Action Plan for Pneumonia and Diarrhoea (GAPPD), 48b Enforcement and injury prevention, 347–348 Engineering and injury prevention, 348 Environmental burden of disease, 92–94, 255–256 Environmental health, 255–256 changing global environment and epidemiological transition in, 258–260 of children in high-income countries, 260–261 climate change and, 256, 268 future needs to protect children’s, 269–271 pediatric advocacy regarding, 270–271 and preventing diseases in children caused by exposures to polluted air, soil, and water, 268–269 public engagement in, 271 toxic chemicals and, 261–267, 346 Environmental pediatrics, 270 Environmental scans, 17, 94 of cross-cultural training, 196–197 on injury prevention, 352–356 leadership and, 164–165

PGCH_ch26_IDX_443-456.indd 447

of simulation-based training, 210–214 on specialty care, 404–407 Environmental toxins, 230, 256. See also Toxic chemicals Epidemic Intelligence Service, 76 Epidemiological transition, 258–260 Epidemiology, molecular, 264 Epidemiology of child health changing global environment and, 258–260 disease surveillance and data needs in, 66–76 morbidity and disease burden, 64–65 mortality rates and major causes, 45–47, 62–64 research on environmental hazards and, 270 Epistemology, 9 Ertem, I.O., 223 Ethical Research Involving Children, 303, 305, 315 Ethics, research, 299, 301–302 child, 303 children’s rights and child, 303–304 consent/assent and, 307–309 core principles in global child health research, 305–306 future of, 314–317 key issues in, 306–312 mechanisms of, 314 methodology and, 312–313 payment and gifts and, 311–312 principles of global health research and, 301 privacy/confidentiality and, 310–311 protection from harm and, 309 Etic knowledge, 10 Etzel, Ruth A., 135 Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) Global Network for Women’s and Children’s Health Research, 209 Evaluation Fellowship Program, 77 Every Newborn Action Plan, 48b, 207 Every Woman Every Child, 47b, 128, 386 Evidence-based advocacy, 256 Evidence-based interventions and strategies to reduce inequities, 53 F Falls, 345, 347 FAPOG. See French African Group of Pediatric Oncology (FAPOG) Farber, Sidney, 395–396 Feig, Stephen, 398 Fetal Heart Monitor Project, Uganda, 84–85 FIC. See Fogarty International Center for Advanced Study in the Health Sciences (FIC) Financial incentive programs to reduce poverty and improve health, 54–55 First 6 Years, The, 239 Flint, Michigan, water crisis, 92–93

8/23/18 7:15 AM

448 Index

Fogarty International Center for Advanced Study in the Health Sciences (FIC), 25, 76, 382 Foreign Assistance Act of 1961, 23 Fragile states, 52 Freeman, William, 127 French African Group of Pediatric Oncology (FAPOG), 405–406 Frequency, disease, 66 Future of global health research and education, 36–38 G Gaps, research and education, 17 in injury prevention, 352–353 in Neonatal Resuscitation Program, 213–214 specialty care, 407–409 Gautier, Jacqueline, 174, 176 GBD. See Global Burden of Disease (GBD) Genetic conditions, 221 Genetics and genomics research, 316 Geographic information system analysis, 68 George, Bill, 161 GHESKIO Centers, 321–322, 332–333 elements of best practices by, 331 history of, 323 innovation and flexibility, responsiveness to new challenges, and advocacy of, 326–329 mission of, 324 next steps for, 331–332 three pillars of partnership in, 324–325 Gitlin, David, 396 Gladwell, Malcolm, 169 Global Burden of Disease (GBD), 45–47, 64 environmental burden of disease and, 92–94 injuries and, 341, 342, 353 Global Burn Registry, 354, 355 Global child health agenda, AAP, 381–388 Global child health research. See also Global health research children’s rights and, 303–304 core ethical principles in, 305–306 history of, 304–305 methodology and ethics in, 312–313 societal effects of, 312 Global citizen students, 106 Global Fund to Fight AIDS, Tuberculosis and Malaria, 325 Global health. See also Inequities, child health clinical training in, 134–135 community-based participatory research, 5, 130–131 competencies in. See Competencies definition of, 30 epidemiology of. See Epidemiology of child health goals in, 128–131 in humanitarian and conflict settings, 52 indicators of, 72–73, 74t

PGCH_ch26_IDX_443-456.indd 448

integration in, 5–6, 38 leadership applied to, 162–164 new development matrix for. See Development matrix for global child health outcome-driven workforce training and development for, 37 physician shortages effects on, 31–32, 33t social determinants of, 47–52, 65–66, 188–190 universal competencies common to all areas of, 99–101 Global Health Education Consortium, 29 Global Health Fellows Program II, 77 Global Health in Pediatric Education: An Implementation Guide for Program Directors, 388 Global health research. See also Education; Global child health research to achieve equity gains, 55–56 background/history/context of, 22–23, 123–125 community-based participatory research (CBPR) in. See Community-based participatory research (CBPR) competencies in, 121–131 cultural competence in, 35 discussions and foci in the new millennium, 28–35 on eliminating the pull and push creating the “brain drain,” 34 emergence of the United States in international health and, 23–25 epidemiology in. See Epidemiology of child health ethics of. See Ethics, research future of, 36–38 gaps in, 17, 352–353 history/context of US government investment in, 382–384 new development matrix in. See Development matrix for global child health on physician shortages, 31–32, 33t reassessing the purpose and consequences of international medical graduate training and, 25–27 refocusing on international health within emerging nations, 27–28 research ethics and, 301–302 role of specialty care in, 391–409 translational, 6–8, 394–401 Global Health Resource Toolkit, 30 Global Injury Prevention Network, 349 Global Pediatric Education Consortium (GPEC), 36 Global Status Report on Road Safety 2015, 344 Global Strategy for Women’s, Children’s and Adolescents’ Health (2016-2030), The, 128 GME. See Graduate medical education (GME) Goals, global, 128–131. See also Millennium Development Goals (MDGs); Sustainable Development Goals (SDGs)

8/23/18 7:15 AM

449 Index

Good, Robert, 396 GPEC. See Global Pediatric Education Consortium (GPEC) Graduate medical education (GME), 25–27, 164–165. See also Education Group dynamics, 281, 288–289 Guidelines on Ethics for Health Research in Tanzania, 302 H Haddon, William, Jr, 348 Haddon Matrix, 348 Haggerty, Robert, 383, 384 Haiti Association Médicale Haitienne (Haitian Medical Society), 325 GHESKIO Centers in. See GHESKIO Centers Haitian Pediatric Society (HPS), 174, 175–177 Haiti Cardiac Alliance (HCA), 13–16 ongoing socioeconomic challenges in, 329–330 SUNY partnership in, 110–112 Handbook for Culturally Responsive Science Curriculum, 126 Hanna-Attisha, Mona, 92 Harlem Hospital Injury Prevention Program, 11 HBB. See Helping Babies Breathe (HBB) HDI. See Human Development Index (HDI) Health indicators, 72–73, 74t Health Professions Educational Assistance Act of 1976, 22, 25 Heart, leading with, 161, 166 Heidelberger, Charles, 394 Helping Babies Breathe (HBB), 201, 203–204, 205f, 207, 386 current best practice in, 214 current gaps in knowledge and, 213–214 current status of educational efforts in, 210–213 future of, 214–215 T1-level science, 207–208 T2-level science, 208–209 T3-level science, 209 Hematology/oncology, modern. See Specialty care Hemophilia, 400 Herrick, John, 395 High-income countries environmental health in, 260–261 environmental scan of, 404–405 specialty care and perspective of, 394–398, 401–403, 404–405 HIV infection, 224–225 AIDS Clinical Trials Group, 325 AIDS Healthcare Foundation, 325 antiretroviral treatment (ART) for, 224–225, 327

PGCH_ch26_IDX_443-456.indd 449

GHESKIO Centers for. See GHESKIO Centers HIV Vaccine Trials Network, 325 parental HIV disclosure project in China, 282–294 pediatric clinics for treating, 141–142 HPV. See Human papillomavirus (HPV) Human Development Index (HDI), 228 Humanitarian and conflict settings, 52, 64 Human papillomavirus (HPV), 328 Humility, cultural, 196 I IAT. See Implicit Association Test (IAT) ICD. See International Classification of Diseases (ICD) IGMCD. See International Guide for Monitoring Child Development (IGMCD) IHI. See Institute for Healthcare Improvement (IHI) ILCOR. See International Liaison Committee on Resuscitation (ILCOR) IMF. See International Monetary Fund (IMF) IMGs. See International medical graduates (IMGs) Immunization efforts, global, 386–387 Imperialism, economic, 329 Implementation, 5 research in, 9 Implementation science, 75–76 Implicit Association Test (IAT), 192 Inclusion, 154 India/Pediatric Oncology in Developing Countries (PODC) program, 406 Indicators, health, 72–73, 74t Individual dynamics, 281 Inequities, child health. See also Global health causes of mortality and, 45–47 community health workers and, 54 early childhood development and, 55 essential interventions across the life course, 53 evidence-based interventions and strategies to reduce, 53 financial incentive programs to reduce poverty and improve, 54–55 global burden and trends of child mortality and, 45 Millennium Development Goals on, 43–44 recent action plans for, 47–48b setting research priorities to achieve gains against, 55–56 social determinants of health and, 47–52, 65–66 Infections, 224–226 diarrheal, 225, 326 HIV. See HIV infection malaria, 225–226 Ingram, Vernon, 396 Initiative for Global Road Safety, 356

8/23/18 7:15 AM

450 Index

Injury burden of, 342–344 definition of, 341 leading causes of unintentional, 344–346 Injury prevention, 339 background on, 341–346 in Bangladesh, 351–352 Center for Injury Research and Prevention at the Children’s Hospital of Philadelphia, 350–351 in Central Harlem, 10–12 current best practices in, 349–350 environmental scan on, 352–356 future of, 353–356 principles of, 346–349 public health approach to, 346 Institute for Healthcare Improvement (IHI), 75, 77 Institute of Child and Mother Health, 351 Institute of Health Metrics and Evaluation, 64 Institute of Medicine, 188, 192 Integrated Global Action Plan for the Prevention and Control of Pneumonia and Diarrhoea, 48b Integrated Toolkit to Save Newborn Lives, Pakistan and Kenya, 85–86 Integration, 5–6, 38 Interactive Communication with Openness, Passion, and Empowerment (ICOPE) project, 282–283 dissemination and implication, 293–294 formative study, 288–289 Guangxi CDC partnership with, 284–285, 288–289 intervention delivery, 290–291 intervention development, 289–290 intervention evaluation, 291–292 introduction to, 283–284 lessons learned from, 294–295 needs assessment, 285–288 project process guided by CBPR model, 285–294 project sites, 283 International Bank for Reconstruction and Development, 22–23 International Classification of Diseases (ICD), 46 International Epidemiology Databases to Evaluate AIDS, 325 International Ethical Guidelines for Biomedical Research Involving Human Subjects, 301 International Experience and Technical Assistance Program, 76 International Guide for Monitoring Child Development (IGMCD), 233, 234–235, 236 International Liaison Committee on Resuscitation (ILCOR), 385 International Maternal Pediatric Adolescent AIDS Clinical Trials Network, 325

PGCH_ch26_IDX_443-456.indd 450

International medical graduates (IMGs), 24–25 “brain drain” factors and, 34 cultural competence with, 35 reassessing the purpose and consequences of training programs for, 25–27 International Meeting on Indigenous Child Health, 174 International Monetary Fund (IMF), 23 International Network for Cancer Treatment and Research (INCTR), 406 International Road Assessment Programme (iRAP), 354 International Society for Burn Injuries, 355 International Society for the Prevention of Child Abuse and Neglect (ISPCAN), 359–360, 372 Interpreters, language and culture, 193–194 Interprofessional education, 8–9 J Janeway, Charles A., 383 Japanese International Cooperation Agency, 325 Johnson, Lyndon, 25, 382 Judicial responses to child maltreatment, 368 Julius B. Richmond Center of Excellence, AAP, 386 Justice, 302, 306 K Katz, Samuel, 384 Kennedy, John F., 23 King, Mary Claire, 163 Kleinman, Arthur, 187, 194 Kumeyaay Nation, 173, 175, 180–181 L L’Agence Nationale de la Recherche sur le SIDA, 325 Lancet, 47–48b, 53, 372 Language development, book sharing and, 240–241 Laraque, Franck, 329 Laraque-Arena, Danielle, 135, 169, 176–177 LCME. See Liaison Committee on Medical Education (LCME) Leadership, 159 barriers to effective, 165 core elements of, 161–162 current best practices in global health, 162–164 differences between management and, 166 environmental scan and, 164–165 history and context of what is, 160–161 program evaluation and, 164 styles of, 162 Leadership compass, 162 Leading with heart, 161

8/23/18 7:15 AM

451 Index

Lead poisoning, 92, 263 League of Nations Health Organization (LNHO), 22 League of Red Cross Societies, 22 Learn, See, Practice, Prove, Do, and Maintain (LSPPDM) framework, 204, 206t LEARN model, 194 Lerebours, Emmeline, 174, 175 Leukemia, 261–262 clinical/translational research on, 394–401 current best practices in, 401–404 Leukemia & Lymphoma Society, 405 Liaison Committee on Medical Education (LCME), 35, 165 Life-cycle approach to developmental risks and protective factors, 223f LNHO. See League of Nations Health Organization (LNHO) Lotu, Denize, 176 Low- and middle-income countries addressing developmental delay and disability in, 235–236 child disability and development in, 221–222 data collection in, 66, 69 early childhood development in, 55 effects of physician shortages in, 31–32, 33t efforts to reduce poverty in, 23 environmental scan of, 405–407 environmental toxins in, 230, 261 exposure to violence in, 229 implementation science in, 75 infections in. See Infections injury prevention in. See Injury prevention international medical graduates from, 25 language development in, 240 life-cycle approach to developmental risks in, 223f maternal mental health and well-being in, 229, 242 mortality data from, 66 Neonatal Resuscitation Program in. See Helping Babies Breathe (HBB) physician training in, 31 research ethics in. See Ethics, research screening versus surveillance and monitoring in, 234 social determinants of global child health in, 65–66 specialty care and perspective of, 398–401, 403–404 strengthening of relationships between the United States and, 24 toxic chemicals in, 265–267 LSPPDM. See Learn, See, Practice, Prove, Do, and Maintain (LSPPDM) framework M Magrath, Ian, 406 Malaria, 225–226

PGCH_ch26_IDX_443-456.indd 451

Malaria Genomic Epidemiology Network (MalariaGEN) study, 316–317 Malawi Developmental Assessment tool, 234 Malnutrition, 226–227 Managing versus leading, 166 Marmot, Michael, 188 Massachusetts General Hospital Global Health Innovations and Leadership Fellowship, 77 Maternal and Child Epidemiology Estimation (MCEE), 45, 46 Maternal deaths, 45, 46–47 Maternal education, 230–231 Maternal mental health, 228–229, 242–243 MCEE. See Maternal and Child Epidemiology Estimation (MCEE) MDGs. See Millennium Development Goals (MDGs) MDRTB. See Multidrug-resistant tuberculosis (MDRTB) Medawar, Peter, 394 Medline, 35 Mercury poisoning, 267 Mérieux Foundation, 325 Migration. See Cross-cultural training Millennium Development Goals (MDGs), 8, 29, 43–44, 89, 94, 128 A Promise Renewed and, 47b Miller, Aaron, 90 Miller, Robert, 270 Minamata Convention on Mercury, 270 Mindfulness. See Leadership Mindset, 239 Mission trips, 138–139 Mobile health, 353 Molecular epidemiology, 264 Montreal Protocol on Substances That Deplete the Ozone Layer, 269–270 Morbidity disease burden, 64–67 due to injuries, 341–342 epidemiological transition and, 258–260 Morehouse School of Medicine, 164 Mortality adolescent, 64 disease severity and data on, 66–67 due to injuries, 341–342 epidemiological transition and, 258–260 Mortality, child age and, 63 global burden and trends of, 45 MDGs of, 62 rates and major causes of, 45–47, 62–64 regional, 63 Mother Child Education Foundation, 238–239 Mullenax, Jean, 173, 175, 180 Multidrug-resistant tuberculosis (MDRTB), 328 Multiple Indicator Cluster Surveys and Early Child Development Index, 234 Murray, Christopher, 64

8/23/18 7:15 AM

452 Index

N

P

Nathan and Oski’s Hematology of Infancy and Childhood, 393 National Cancer Institute, 403, 406 National Highway Traffic Safety Administration, 354 National Institute for Children’s Health Quality (NICHQ), 75 National Institute for Medical Research in Tanzania, 307 National Institutes of Health (NIH), 6, 25, 76, 285, 293, 382 Common Fund, 30 GHESKIO and, 325, 331 Regulations, Policies, and Guidelines Ethical Guideline and Regulation, 302 National Library of Medicine, 408 National Research Council, 263 Native American people, 125–128 Needs assessments, 68, 285–288 Neglect, child. See Child maltreatment Nelson Mandela Institute for Education and Rural Development, 175, 179–180 Neonatal intensive care units (NICUs), 86–87 Neonatal Resuscitation Program (NRP), 201, 384–385. See also Helping Babies Breathe (HBB) history of simulation-based training in, 203–207 Neurodevelopmental disorders, 260 New Car Assessment Program (NCAP), 354–355 New England Journal of Medicine, 323 New pediatric morbidity, 260 New York City Department of Health and Mental Hygiene, 73 NICHQ. See National Institute for Children’s Health Quality (NICHQ) NICUs. See Neonatal intensive care units (NICUs) NIH. See National Institutes of Health (NIH) Nongovernmental organizations (NGOs), 108, 333, 349 NRP. See Neonatal Resuscitation Program (NRP) Nuremburg Code, 303 Nurturing care, 227 Nutrition, inadequate, 226–227

Paglia, Donald, 396 Palfrey, Sean, 176 PALS. See Pediatric Advanced Life Support (PALS) Pan American Sanitary Bureau, 22 Pannaraj, Pia, 174 Pape, Jean William, 323 Parenting skills and knowledge, inadequate, 227–228 interventions for, 238–239 Participatory research, 278 Passive injury prevention, 347 Pauling, Linus, 395, 396 Payment and gifts in child research, 311–312 Pediatric Advanced Life Support (PALS), 203 Pediatrics, 387 Persistence in advocacy, 169–170 asset-based community development and, 172–174 best practices with case examples of, 174–181 Convention on the Rights of the Child and, 169, 171–172 Haitian Pediatric Society (HPS) and, 174, 175–177 history/context from perspective of the United States, 170–174 Kumeyaay Nation and, 175, 180–181 Nelson Mandela Institute for Education and Rural Development and, 175, 179–180 Philippine Ambulatory Pediatric Association, Inc (PAPA) and, 174–175, 177–179 transition from the perspective of the middle-/lower-income nation and, 174 Perutz, Max, 396 Pesticides in the Diets of Infants and Children, 263 Philippine Ambulatory Pediatric Association, Inc (PAPA), 174–175, 177–179 Physician shortages, 30, 31–32, 33t “brain drain” and, 34 cultural competence in addressing, 35 PINDA. See Programa Infantil Nacional de Drogas Antineoplásicas (PINDA) Pinkel, Donald, 403 Plan-do-study-act (PDSA) cycles, 75 Poisonings, unintentional, 345–346 Pollution, 255–256, 258. See also Toxic chemicals preventing diseases in children caused by exposure to, 268–269 Port-au-Prince, Haiti, best practices example, 12–16 Porteus, Kimberley, 175, 179 Post-disaster surveillance project, South America, 150–151, 152f

O Obesity, 261 Office International d’Hygiène Publique, 22 Operational research, 5 Outcome-driven workforce training and development, 37

PGCH_ch26_IDX_443-456.indd 452

8/23/18 7:15 AM

453 Index

Poverty, 48–52, 65–66, 227, 243 book sharing and early literacy and, 240–241 financial incentive programs to improve health and reduce, 54–55 injuries and, 343 parenting skills and knowledge and, 228 Practiced-based learning, 165 Prevention of Child Injury through Social Intervention and Education (PRECISE), 352 Preventive Medicine Residency and Fellowship, 76 Primary Care and Public Health: Exploring Integration to Improve Population Health, 5 Primary prevention of injuries, 346 Privacy/confidentiality, 310–311 Programa Infantil Nacional de Drogas Antineoplásicas (PINDA), 405–406 Programme for Global Pediatric Research, 99 Program monitoring and evaluation, 75 leadership and, 164 Project SHINE, 313 Promise Renewed, A, 47b Protection from harm, 309 Protective factors and resilience in early childhood development, 230–233 Protocol-based therapy, 401–402 Prudent, Nicole, 174, 176 Public health approach to injury prevention, 346 PubMed, 408 Purpose, 161 Purposeful and mindful leadership. See Leadership Q QALYs. See Quality-adjusted life years (QALYs) Quality-adjusted life years (QALYs), 67 Quality improvement, 75 R Ramos-Bonoan, Carmen, 174–175, 177 REACH. See Registration, Evaluation, Authorisation and Restriction of Chemicals (REACH), European Union Red Book, 384–385 Registration, Evaluation, Authorisation and Restriction of Chemicals (REACH), European Union, 269 Registries, 68 Relational dynamics, 281 Relationships, establishing connected, 162 Reporting systems for child maltreatment, 365, 368

PGCH_ch26_IDX_443-456.indd 453

Research. See Global child health research; Global health research Resilience in early childhood development, 230–233 Respect for persons, 302, 305 Risk factors in early childhood development, 222–230 Riviere, Cynthia, 328 Road traffic injuries, 341, 343, 344, 354 best practices for prevention of, 349–350 Haddon Matrix and, 348 Road Traffic Injuries Research Network (RTIRN), 350 Rockefeller Foundation, 22, 29 Roles/responsibilities competency, 99, 100, 123, 139–142 Rotterdam Convention, 270 Routine disease surveillance, 67 Royal College of Paediatrics and Child Health, 106–107 S San Agustin Shaw, Mutya, 174–175, 177 Satcher Health Leadership Institute, 164 Scarcity, 227 Screening, developmental, 234–235 SDGs. See Sustainable Development Goals (SDGs) Secondary prevention of injuries, 346 Secondhand smoke, 386 Section on International Child Health (SOICH), AAP, 30, 385 Self-discipline, 162 Service learning, 7–8 Services for child maltreatment, 368 Severity, disease, 66–67 Sexual and reproductive health and GHESKIO, 327 Sexually transmitted infections and GHESKIO, 326–327 SickKids Centre for Global Child Health, 84, 86–88 SickKids Programme for Global Paediatric Research, 122 Simulation-based training, 201 and clinical outcomes (T3-level science), 209 context of, 203–209 current best practice in, 214 and education outcomes (T1-level science), 207–208 environmental scan of current state of, 210–214 future of, 214–215 and skills performance in a clinical setting (T2-level science), 208–209

8/23/18 7:15 AM

454 Index

Small for gestational age (SGA) infants, 226–227 Smoke, secondhand, 386 Social accountability, 7–8 Social determinants of global child health, 47–52, 65–66 cultural competency and, 187–190 Social media, 154 Société Internationale D’Oncologie Pédiatrique (SIOP), 406 Society for Implementation Research Collaboration, 76 Solid values, 161 Special considerations competency, 99, 101, 152–155 Specialty care, 391 current best practices in, 401–404 environmental scan on, 404–407 high-income countries’ perspectives on, 394–398, 401–403 history/context and personal perspective on, 393–394 improving patient care requiring concurrent commitment to clinical/translational research and, 394–401 low- and middle-income countries’ perspectives on, 398–401, 403–404 what needs to happen next with, 407–409 Sprinkles Global Health Initiative, 88–89 Stanford Youth Diabetes Coaches Program, 8 State University of New York (SUNY) partnership in Haiti, 110–112 St. Baldrick’s Foundation, 405 Stephens, Sidney, 126 Stillbirths, 46, 128 Stockholm Convention on Persistent Organic Pollutants, 270 Structural dynamics, 281 Styles, leadership, 162 Subbarow, Yellapragada, 396 Subclinical toxicity, 263 Surti, B.S., 393 Surveys, 67–68 Sustainable Development Goals (SDGs), 8, 30, 44, 84, 94, 121, 128–129, 388 on injuries, 342, 353–354 Systems-based practice, 165 T Tao Te Ching, 161 Take Care New York, 73 Tanzania National Health Research Forum, 302 Team building and teamwork competency, 9, 99, 101, 123, 147–151 Ten Questions screening tool, 221, 234 Tertiary prevention of injuries, 347 Ti Moun Annou Li (Children Let’s Read), 174 Tipping Point: How Little Things Can Make a Big Difference, The, 169

PGCH_ch26_IDX_443-456.indd 454

Toolkit for Minimizing the Effect of Procedural Pain in Neonates, Ghana, 86–87 Toxic chemicals. See also Environmental health child health and, 261–263, 346 child health in low- and middle-income countries and, 265–267 children’s unique vulnerability to, 263–264 disease in children and, 263 failure to test for, 262–263 international controls on, 269–270 legally mandated testing for, 269 recent advances in knowledge of effects of, 264–265 subclinical toxicity and, 263 Toxic Substances Control Act of 1976 (TSCA), 262–263 Toxins, environmental, 230, 256. See also Toxic chemicals Trans Caribbean HIV/AIDS Research Initiative, 325 Transcultural teams, 309 Transdisciplinary teams, 309 Transforming Our World: The 2030 Agenda for Sustainable Development, 353–354 Translational research, 6–8, 394–401 Transparency International, 108 Trejo, Madre Ines, 174 Triangulation, 72, 73f Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans, 302, 314 Tropical Health and Education Trust (THET), 107–108, 109 Tuberculosis and GHESKIO, 327–328 U UN. See United Nations (UN) Unconscious bias, 192–193 Undernutrition, 226–227 Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care, 188, 192 Unintended consequences of research, 309 Unintended harm conceptual mapping, 309 Unintentional poisonings, 345–346 Union for International Cancer Control Global Education and Training Initiative (UICCGETI), 408 United Nations (UN), 8, 22–23, 29, 43 Care for Child Development counselling cards, 236–238 Children’s Fund (UNICEF), 48b, 88, 91, 234, 235, 351 Convention on the Rights of the Child, 169, 171–172, 303–304, 341 Every Newborn Action Plan, 48b, 207 Every Woman Every Child, 47b, 128, 386 GHESKIO and, 325 on injury prevention, 349 Inter-Agency Group for Child Mortality Estimation, 63

8/23/18 7:15 AM

455 Index

Millennium Development Goals (MDGs), 8, 29, 43–44, 89, 94, 128 Millennium Project, 72 Millennium Summit, 89 Road Safety Collaboration (UNRSC), 349 Sustainable Development Goals (SDGs), 8, 30, 44, 84, 94, 121, 128–129, 342, 388 Transforming Our World: The 2030 Agenda for Sustainable Development, 353–354 United States in international health, emergence of the, 23–25 Universal competencies, 99–101 University of Massachusetts Pediatrics Global Health Fellowship, 77 University of Toronto International Health Program, 84 US Agency for International Development (USAID), 23–24, 25, 27, 77, 89, 385–386 GHESKIO and, 325 USAID. See US Agency for International Development (USAID) US Maternal and Child Health Bureau, 24 V Values/ethics competency, 99–100, 122, 135–139 Violence, child exposure to, 229–230 Vital registries, 68 Vitamin D supplementation, Bangladesh, 87–88 W Wallerstein, N., 278, 279 War, 52, 230 adolescent deaths due to, 64 Water quality, 347 Weitzman, C.C., 223 Wherle, Paul, 383 WHO. See World Health Organization (WHO) Windows of vulnerability, 264 World Bank, 23, 30, 83 GHESKIO and, 325

PGCH_ch26_IDX_443-456.indd 455

World Federation of Academic Institutions for Global Health, 30 World Health Organization (WHO), 6, 22, 24, 74, 292, 405 AAP global goals and, 385–386 Care for Child Development counselling cards, 236–238 on child deaths due to environmental hazards, 255, 258 definition of stillbirth, 46 Disability Assessment Schedule, 66–67 Every Newborn Action Plan, 48b GHESKIO and, 325 Global Database on Anaemia, 88 Global Health Education Consortium, 29 Global Health Observatory data, 85 Guidelines on Basic Newborn Resuscitation, 213 on injury prevention, 349, 355 Integrated Global Action Plan for the Prevention and Control of Pneumonia and Diarrhoea, 48b on pediatric HIV, 141, 142 on physician shortages, 31–32, 33t on protection from harm, 309 research ethics and, 302 on road traffic injury prevention, 349–350 routine disease surveillance by, 67 smallpox eradication and, 383 on social determinants, 189–190 World Perspectives on Child Abuse, 359 World Report on Road Traffic Injury Prevention, 349–350 Y Years of potential life lost (YPLL), 342 YPLL. See Years of potential life lost (YPLL) Z Zuelzer, Wolf W., 393, 395, 396

8/23/18 7:15 AM

PGCH_ch26_IDX_443-456.indd 456

8/23/18 7:15 AM

EDITORS

Danielle Laraque-Arena, MD, FAAP Bonita F. Stanton, MD, FAAP This indispensable resource provides a cohesive, sustainable, and ethical approach to medical education and research that addresses the health needs of children locally and globally. Areas covered include global health education and research efforts and substantive and sustainable approaches aimed at changing the health status of children, their families, and communities through effective models of research and education. Each chapter contains an abstract of the core concept; teaching points; history and context of the topic relating back to the perspective of high-, middle-, and low-income/resourced countries; core principles and competencies; and an environmental scan of the current state with identification of successes and gaps.

Topics include ▶▶ Operating Principles for Engaging in Global Education and Research ▶▶ Domains of Competency for Global Health ▶▶ Educational Models in Global Health Settings ▶▶ Models for Global Health Research

ISBN 978-1-61002-189-0

90000>

Laraque-Arena • Stanton

For other pediatric resources, visit the American Academy of Pediatrics at shop.aap.org.

Principles of Global Child Health: Education and Research

Principles of Global Child Health: Education and Research

Principles of Global Child Health: Education and Research

EDITORS

Danielle Laraque-Arena, MD, FAAP Bonita F. Stanton, MD, FAAP

9 781610 021890

AAP

GCH SPREAD.indd All Pages

8/23/18 10:51 AM