Participatory Health Research: Voices from Around the World

279 Pages·2018·3.881 MB·English

by  Michael T. Wright, Krystyna Kongats

Michael T. Wright · Krystyna Kongats
Editors
Participatory
Health Research
Voices from Around the World
Participatory Health Research
Michael T. Wright • Krystyna Kongats
Editors
Participatory Health
Research
Voices from Around the World
Editors
Michael T. Wright Krystyna Kongats
Catholic University of Applied Sciences School of Public Health
Institute for Social Health University of Alberta
Berlin, Germany Edmonton, AB, Canada
ISBN 978-3-319-92176-1 ISBN 978-3-319-92177-8 (eBook)
https://doi.org/10.1007/978-3-319-92177-8
Library of Congress Control Number: 2018948359
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Cover illustration: Different fabrics waving in the wind a metaphor for the voices of the world, all
different in width and length and strength. Together they form an interesting colourful whole.
Created by artist Janine Schrijver.
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and Social Well-being.
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Preface: The Need for Participatory Health
Research
A wealth of international studies have documented that health is distributed in soci-
ety according to a social gradient, with those of higher social status living longer
and healthier than those of lower social status. Finding means to explain and remedy
this disparity has become a central focus of public health research and practice
(Marmot 2011; Jakab and Marmot 2012). The field of health promotion in particular
is concerned with effecting change in the social environment for the purpose of
improving health, particularly the health of socially marginalized groups. Here the
necessity of addressing complex social processes at the collective level (community,
neighborhood, society) has become apparent. Also issues of health care access and
delivery involve factors which need to be examined in terms of collective mecha-
nisms, such as social exclusion (Green 2006; Kemm 2006; Trickett 2011).
Participatory health research (PHR) is gaining increased attention as a way to
generate data leading to action for addressing social disparities in health outcomes.
In PHR, the goal is to maximize the participation of those whose life or work is the
subject of the research in all stages of the research process (International
Collaboration for Participatory Health Research 2013). This type of participation is
the defining principle of PHR, and it is what sets this type of research apart from
other approaches in the health field. In PHR, research is not done “on” people as
passive subjects providing “data” but “with” them to provide relevant information
for improving their lives. As this book documents, reaching a deep level of partici-
pation in health research is very challenging, but it provides a unique opportunity
for transformative change in health systems and in the lives of the people engaged
in the research process.
Participatory forms of research have achieved recognition in several fields
including education, social work, management, and community development; how-
ever, the application of participatory approaches to health research is relatively new.
Health research is dominated by the biomedical model which follows a positivist
paradigm consistent with the natural sciences, thus privileging experimental designs
and quantitative data. The focus is on acquiring an “objective” knowledge which is
influenced neither by the particular context in which the data are collected nor by
the particularities of the lives of the study participants. Through various means
v
vi Preface: The Need for Participatory Health Research
related to design, data collection, and statistical analysis, the researchers seek to
isolate and measure specific causal mechanisms and intervention effects as pre-
cisely as possible. The knowledge thus generated is sorted hierarchically into
“classes of evidence” according to the principles of evidenced-based medicine
(EBM), with the results of experimental studies being judged as providing the stron-
gest proof for mechanisms of disease causation and for the efficacy of interventions
to ameliorate health problems.
Although the biomedical paradigm has been shown to have severe limitations
regarding social (as opposed to clinical) aspects of health (McQueen and Anderson
2001, 2004; Greenhalgh et al. 2014), alternatives such as qualitative and participa-
tory forms of research have a difficult time being accepted by some as constituting
sufficient evidence for effective action in public health (Denzin 2017; Mays and
Pope 2000). As documented in this volume, PHR as practiced in many different
countries indeed provides unique contributions to improving the health of commu-
nities which cannot be achieved by other research approaches.
This book provides a first look at PHR from an international perspective. Until
recently, participatory health researchers have been relatively isolated, focused on
structures and issues at the local or regional level. Through the work of the
International Collaboration for Participatory Health Research (ICPHR) and the
growing number of national and regional networks, participatory health researchers
have been able to come together to exchange their experience and ideas about what
PHR is and what it can be. The chapters in this book document the work of the
ICPHR, while highlighting issues of international and regional importance.
Overview of Chapters
This book is divided into two parts: “Central Themes” and “Regional Perspectives.”
Part I provides insight into some of the core issues currently facing participa-
tory health researchers. PHR draws from various traditions in different countries;
Chapter 1 identifies several characteristics which these traditions have in common.
Chapter 2 moves into a discussion on the development and progression of the
International Collaboration for Participatory Health Research (ICPHR) over the
past decade, highlighting the issues raised in bringing together researchers from
the various traditions. Chapter 3 explores the challenges of evaluating PHR proj-
ects in light of their complex structure, diversity of stakeholders, and multiple
outcomes. Chapter 4 reflects on the unique requirements for teaching health and
social work professionals how to conduct PHR in higher education settings, with
a focus on ways to provide a transformative learning experience. The topic of
research impact has become an important issue worldwide. Demonstrating the
impact of PHR poses specific challenges which are examined in Chapters 5 and 6,
including issues related to building a systematic and dynamic evidence base for
the field. Chapter 7 looks at the emerging role of children as co-researchers in
PHR projects from theoretical and practical perspectives, based on the work of the
international network Kids in Action, a project of the ICPHR.
Preface: The Need for Participatory Health Research vii
Part II of the book builds off the central themes presented in Part I using regional
case studies from around the globe including: Germany, India, Latin America, the
Netherlands, North America, Portuguese-speaking countries, South Africa, and the
United Kingdom. Each chapter “sets the stage” by outlining the influence of the
regional context on conducting PHR. Through these chapters, the reader will not
only gain a better understanding of how PHR differs depending on political and
cultural context but also of the similarities in terms of challenges and core princi-
ples. Chapter 8 provides an account of the German research consortium
PartKommPlus, sharing some of the challenges and opportunities in scaling up PHR
to address national policy priorities. Chapter 9 looks at the central role nongovern-
mental organizations in India have played in health promotion at the local level,
drawing on the practice of participatory health research, and how this practice chal-
lenges existing research agendas. Chapter 10 reflects on the rich and diverse history
of PHR in Latin America, exploring the current status of PHR in this region with a
particular focus on chronic noncommunicable diseases. Chapter 11 provides an
account of PHR in the Netherlands, focusing on older people and how historical and
cultural differences between generations influence research practice. Chapters 12
and 13 both describe PHR from a North American perspective, the former present-
ing results from a qualitative literature review of PHR in health organizations and
the latter reflecting on the evolution of PHR from the “pre-health promotion” to the
“evidence-based practice” era. Chapter 14 is a reflexive, comparative analysis of
PHR across Portuguese-speaking countries including Angola, Brazil, Cape Verde,
and Portugal. Chapter 15 looks at PHR in the South African context, discussing
action-oriented and policy-focused approaches in the face of dramatic social and
health inequities in the post-apartheid years. Finally, Chapter 16 closes with a reflec-
tion on the historical development of PHR in the UK, highlighting the inherent
political tensions in top-down initiatives vs. grassroots ownership and the new
opportunities which the current moment provides.
Join Us!
This book is the result of nearly a decade of cooperation and exchange within the
International Collaboration for Participatory Health Research. We hope readers will
find encouragement and a sense of community in seeing some of their own chal-
lenges mirrored in the work presented here, and be inspired by new possibilities for
participatory health research in their own countries and communities. The book is
an invitation to join with the ICPHR as it seeks to promote participatory health
research in its myriad forms as a means for addressing the pressing health problems
of our world.
Berlin, Germany Michael T. Wright
Edmonton, AB, Canada Krystyna Kongats
viii Preface: The Need for Participatory Health Research
References
Denzin, N. K. (2017). Critical qualitative inquiry. Qualitative Inquiry, 23(1), 8–16.
Green, L. W. (2006). Public health asks of system science: to advance our evidence-b ased practice,
can you held us get more practice-based evidence? American Journal of Public Health, 96,
1–5.
Greenhalgh, T., Howick, J., & Maskrey, N. (2014). Evidence based medicine: a movement in cri-
sis? BMJ, 348, g3725.
International Collaboration for Participatory Health Research (2013) ‘Position Paper 1: What is
participatory health research?’. Berlin: International Collaboration for Participatory Health
Research Report. Available at: http://www.icphr.org/uploads/2/0/3/9/20399575/ichpr_posi-
tion_paper_1_defintion_-_version_may_2013.pdf.
Jakab, Z., & Marmot, M. (2012). Social determinants of health in Europe. Lancet, 379(9811),
103–105.
Kemm, J. (2006). The limitations of ‘evidence-based’ public health. Journal of Evaluation and
Clinical Practice, 12, 319–324.
Marmot, M. (2011). Global action on social determinants of health. Bulletin of the World Health
Organisation, 89(10): 702.
Mays, N., & Pope, C. (2000). Qualitative research in health care: Assessing quality in qualitative
research. BMJ: British Medical Journal, 320(7226), 50.
McQueen, D. V., & Anderson, L. M. (2001) What counts as evidence: issues and debates. WHO
regional publications. European series, 92, 63–81.
McQueen, D.V., & Anderson, L. M. (2004) Utiliser des données probantes pour évaluer l’efficacité
de la promotion de la santé: quelques enjeux fondamentaux. Promotion & Education, 11(1),
suppl., 11–16.
Trickett, E. J., Beehler, S., Deutsch, C., Green, L. W., Hawe, P., McLeroy, K., Miller, R. L., Rapkin,
B. D., Schensul, J. J., Schulz, A. J. & Trimble, J. E. (2010). Advancing the Science of
Community-Level Interventions. American Journal of Public Health, 101(8), 1410–1419.
Contents
Part I Central Themes
1 What Is Participatory Health Research? . . . . . . . . . . . . . . . . . . . . . . . 3
Michael T. Wright, Jane Springett, and Krystyna Kongats
2 Building Consensus, Celebrating Diversity: The International
Collaboration for Participatory Health Research . . . . . . . . . . . . . . . . 17
Michael T. Wright, Tina Cook, Jane Springett,
and Krystyna Kongats
3 Evaluating Participatory Health Research . . . . . . . . . . . . . . . . . . . . . . 25
John G. Oetzel, Jane Springett, Nina Wallerstein, Laura Parajon,
Irene Sia, Mark Wieland, Abigail Reese, and Rangimahora Reddy
4 Participatory Health Research in the Education
of Health and Social Work Professionals . . . . . . . . . . . . . . . . . . . . . . . 41
Irma Brito
5 Demonstrating Impact in Participatory Health Research . . . . . . . . . 55
Krystyna Kongats, Jane Springett, Michael T. Wright, and Tina
Cook
6 Reviewing the Effectiveness of Participatory
Health Research: Challenges and Possible Solutions . . . . . . . . . . . . . 71
Janet Harris
7 Kids in Action: Participatory Health Research with Children . . . . . . 93
Lisa Gibbs, Katitza Marinkovic, Alison L. Black,
Brenda Gladstone, Christine Dedding, Ann Dadich,
Siobhan O’Higgins, Tineke Abma, Marilyn Casley,
Jennifer Cartmel, and Lalatendu Acharya
ix
x Contents
Part II Regional Perspectives
8 PartKommPlus: German Research Consortium
for Healthy Communities—New Developments
and Challenges for Participatory Health Research in Germany . . . . 117
Michael T. Wright, Reinhard Burtscher, and Petra Wihofszky
9 Participatory Health Research: An Indian Perspective . . . . . . . . . . . 127
Wafa Singh
10 Participatory Health Research in Latin America:
Scientific Production on Chronic Diseases . . . . . . . . . . . . . . . . . . . . . . 139
Francisco J. Mercado-Martínez, Leticia Robles-Silva,
and Bernardo Jiménez-Domínguez
11 Participatory Health Research with Older People
in the Netherlands: Navigating Power Imbalances
Towards Mutually Transforming Power . . . . . . . . . . . . . . . . . . . . . . . . 165
Barbara C. Groot and Tineke A. Abma
12 Organizational Participatory Research in North America . . . . . . . . . 179
Paula Louise Bush, Jeannie Haggerty, Carol Repchinsky,
Michael T. Wright, Christine Loignon, Vera Granikov,
Ann C. Macaulay, Jean-François Pelletier, Sharon Parry,
Gillian Bartlett-Esquilant, and Pierre Pluye
13 Participatory Health Research in North America:
From Community Engagement to Evidence-Informed Practice . . . . 205
Jon Salsberg and Nickoo Merati
14 Participatory Health Research International Experience
from Four Portuguese-Speaking Countries . . . . . . . . . . . . . . . . . . . . . 219
Irma Brito, Donizete Daher, Crystiane Ribas, Fernanda Príncipe,
Fernando Mendes, Filipa Homem, Hayda Alves, Lina Berardinelli,
Maria do Céu Barbieri-Figueiredo, Maria da
Conceição Martins Silva, Maria Elisabete da Costa Martins,
Nathalia Miranda, Sonia Acioli, Vanessa Correa, Vera Saboia,
and Verónica Pinheiro
15 Participatory Health Research in South Africa . . . . . . . . . . . . . . . . . . 239
Maghboeba Mosavel, Jodi Winship, and Rashid Ahmed
16 “Home Thoughts from Abroad”: Reflections
on the History of Participatory Health Research in the UK . . . . . . . . 255
Jane Springett
Index . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 271