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Assessing the Potential of Participatory Learning & Action (PLA)

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Assessing the Potential of Participatory Learning & Action (PLA) PDF hosted at the Radboud Repository of the Radboud University Nijmegen The following full text is a publisher's version. For additional information about this publication click this link. http://hdl.handle.net/2066/183426 Please be advised that this information was generated on 2021-10-05 and may be subject to change. Engaging service-users in co-designing primary health care | Mary O’Reilly-de Brún and Tomas de Brún de Brún de Tomas and Brún Tomas and Brún | Mary O’Reilly-de care | Mary O’Reilly-de care health primary health primary co-designing in co-designing in service-users service-users Engaging Engaging Engaging service-users in co-designing primary health care: assessing the potential of Participatory Learning & Action (PLA) Mary O’Reilly-de Brún and Tomas de Brún Engaging service-users in co-designing primary health-care: assessing the potential of Participatory Learning & Action (PLA) Mary O’Reilly-de Brún and Tomas de Brún 516530-L-bw-Reilly Processed on: 24-1-2018 PDF page: 1 Colophon This thesis has been prepared by the Department of Primary and Community Care of the Radboud University Medical Centre, Nijmegen, the Netherlands. The Department of Primary and Community Care participates in the Netherlands School of Primary Care research (CaRe), which has been acknowledged by the Royal Netherlands Academy of Arts and Sciences (KNAW) in 1995. Financial support This thesis was made possible by funding support from: Irish Trust Fund, Norwegian Trust Fund and UNICEF, co-ordinated by The World Bank Population and Human Resources Division, Africa Region: re projects in The Gambia, Senegal, Guinea-Bissau and Mauritania (1993 - 2000). Social Inclusion Unit of Dublin City Council and Dublin City Partnership (Ireland): re 'Men Alone in No-Man's Land’ (MAIN) Project (2007-2008). Health Research Board Partnership Award (Ireland): re Service User PEer ResearcherS (SUPERS) Project (2009-2011). EU Seventh Framework Programme (FP7)/2007-2013 (under Grant Agreement No: 257258) re: REsearch into Implementation STrategies to support patients of different ORigins and language background in a variety of European primary care settings (RESTORE) Project (2011-2015). https://goo.gl/dj24Av Cover: Mary O’Reilly-de Brún and Tomas de Brún Design/layout: Twanny Jeijsman Print: Ipskamp Printing, Enschede ISBN: 978-94-028-0928-2 Digital version of thesis: https://goo.gl/dj24Av Copyright © Mary O’Reilly-de Brún and Tomas de Brún. All rights reserved. Both authors contributed equally to the manuscript. 516530-L-bw-Reilly Processed on: 24-1-2018 PDF page: 2 Engaging service-users in co-designing primary health care: assessing the potential of Participatory Learning & Action (PLA) Proefschrift ter verkrijging van de graad van doctor aan de Radboud Universiteit Nijmegen op gezag van de rector magnificus prof. dr. J.H.J.M. van Krieken, volgens besluit van het college van decanen in het openbaar te verdedigen op woensdag 7 maart 2018 om 14.30 uur precies door Mary O’Reilly-de Brún geboren op 20 januari 1958 te Dublin, Ierland en Tomas de Brún geboren op 8 september 1956 te Dublin, Ierland 516530-L-bw-Reilly Processed on: 24-1-2018 PDF page: 3 Promotoren Prof. dr. C. Van Weel Prof. dr. A. MacFarlane, University of Limerick, Ierland Prof. dr. M.E.T.C. van den Muijsenbergh Copromotor Dr. E.M. van Weel-Baumgarten Manuscriptcommissie Prof. dr. G.J. van der Wilt (voorzitter) Prof. dr. M.J.F.J. Vernooij-Dassen Dr. J. LeMaster, University of Kansas, Verenigde Staten Paranimfen Dr. Erik Teunissen Edel Tierney 516530-L-bw-Reilly Processed on: 24-1-2018 PDF page: 4 Engaging service-users in co-designing primary health care: assessing the potential of Participatory Learning & Action (PLA) Doctoral thesis to obtain the degree of doctor from Radboud University Nijmegen on the authority of the Rector Magnificus prof. dr. J.H.J.M. van Krieken, according to the decision of the Council of Deans to be defended in public on Wednesday March 7, 2018 at 14.30 hours by Mary O’Reilly-de Brún born on January 20, 1958 in Dublin, Ireland and Tomas de Brún born on September 8, 1956 in Dublin, Ireland 516530-L-bw-Reilly Processed on: 24-1-2018 PDF page: 5 Supervisors Prof. dr. C. Van Weel Prof. dr. A. MacFarlane, University of Limerick, Ireland Prof. dr. M.E.T.C. van den Muijsenbergh Co-supervisor Dr. E.M. van Weel-Baumgarten Doctoral thesis committee Prof. dr. G.J. van der Wilt (chairman) Prof. dr. M.J.F.J. Vernooij-Dassen Dr. J. LeMaster, MD, University of Kansas, United States of America Paranimfen Dr. Erik Teunissen Edel Tierney 516530-L-bw-Reilly Processed on: 24-1-2018 PDF page: 6 Contents Chapter 1: General Introduction 9 Section I: Sub-Saharan Africa & the Republic of Ireland, 1993-2009 Chapter 2: The use of Participatory Learning & Action (PLA) research in intercultural health: some examples and some questions. 27 Chapter 3a: Own Goals and Penalties - a study of the needs of socially-excluded males in Dublin Inner City. 37 Chapter 3b: Hear Our Voices, Meet Our Needs: Women & Health. 101 Section II: Exploring the use of PLA in primary healthcare research – Republic of Ireland, 2009-2011 Chapter 4: Using Participatory Learning & Action research to access and engage with ‘hard to reach’ migrants in primary healthcare research. 153 Chapter 5: Involving migrants in the development of guidelines for communication in cross-cultural general practice consultations: a participatory learning and action research project. 179 Chapter 6: Guideline for Communication in Cross-Cultural General Practice Consultations. 199 Section III: Expanding the use of PLA in primary healthcare research: European application, 2011-2015 Chapter 7: Guidelines and training initiatives that support communication in cross-cultural primary care settings: appraising their implementability using Normalization Process Theory. 217 Chapter 8: Material practices for meaningful engagement: An analysis of participatory learning & action research techniques for data generation and analysis in a health research partnership. 231 Chapter 9: Using Participatory Learning & Action (PLA) research techniques for inter-stakeholder dialogue in primary healthcare: An analysis of stakeholders’ experiences. 251 Chapter 10: Learning from doing: the case for combining normalisation process theory and participatory learning and action research methodology for primary healthcare implementation research. 281 Chapter 11: General Discussion 303 Chapter 12: Summary 321 Samenvatting 330 Chapter 13: List of Publications 339 Curriculum Vitae – Mary O’Reilly-de Brún 348 Curriculum Vitae – Tomas de Brún 351 Acknowledgements 353 516530-L-bw-Reilly Processed on: 24-1-2018 PDF page: 7 ’If we had a keen vision and feeling of all ordinary human life, it would be like hearing the grass grow and the squirrel’s heart beat, and we should die of that roar that lies on the other side of silence.’ Mary Anne Evans (George Eliot), Middlemarch, 1861. 516530-L-bw-Reilly Processed on: 24-1-2018 PDF page: 8 Chapter 1 General Introduction 9 516530-L-bw-Reilly Processed on: 24-1-2018 PDF page: 9 Chapter 1 This thesis addresses the application and testing, in a variety of primary healthcare settings, of a practical, innovative research methodology intended to meaningfully engage service-users (patients) in co-designing primary health care that is responsive to their needs, expectations and values. It is based on empirical data collected in Austria, England, Greece, the Netherlands and the Republic of Ireland which assessed the feasibility and impact of the methodology as an approach for building community-based primary health care. An important aspect of this approach is the ability to include individuals and groups from communities that are considered ‘hard to reach’. In this thesis, the emphasis is on involving migrants as co-designers of their health care. The thesis consists of three sections. Section I covers a range of participatory research projects involving vulnerable populations in sub-Saharan Africa and the Republic of Ireland over a period of years; the second and third sections cover the expansion of this early work into specifically primary health care projects. Sections II and III constitute the body of the thesis. Section I: Sub-Saharan Africa & the Republic of Ireland 1993 - 2009. In this part of the thesis we describe preliminary work we conducted in sub-Saharan Africa and in the Republic of Ireland (1993 – 2009). Influenced by our anthropological background and the work of Robert Chambers, we explored the adaptation and application of participatory research methods to a range of health, education and social inclusion projects. The key aim of these projects was to help bridge the gap between the needs of communities and the provision of services at local, regional and national level. A key outcome of this preliminary work was evidence that participatory methods proved effective in eliciting, and making available to research, the perspectives of ‘hard to reach’ communities. Section II: The Republic of Ireland 2009 - 2011 Based on this outcome, we applied participatory research methods in a project called ‘SUPERS’ (Service User PEer ResearcherS) in the Republic of Ireland (2009 – 2011). This study was based on a partnership between the national Health Services Executive’s Social Inclusion Unit, the Discipline of General Practice, National University of Ireland, Galway, and the Centre for Participatory Strategies, Galway.a In response to the increase in the migrant population1,2 and challenges that arise when GPs and migrant service-users do not share language or culture, the study focussed on enhancing communication in cross-cultural general practice consultations in primary care. We trained established migrants to use participatory research methods to access and involve ‘hard to reach’ migrants in the development of a guideline to identify what communication strategies work best, for whom and in what circumstances. An innovative aspect of this study was the active inclusion of ‘hard to reach’ migrants, who, on the basis of inaccessibility, language-discordance and cultural difference, have been consistently excluded from participation in primary healthcare research.
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