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Title Ethics in participatory research for health and social well-being : cases and commentaries / edited by Sarah Banks and Mary Brydon-Miller
Published Milton : Routledge, 2018

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Description 1 online resource (242 pages)
Contents <P>Chapter 1. Ethics in participatory research</P><P>Sarah Banks and Mary Brydon-Miller</P><B><P></P></B><P>Chapter 2. Partnership, collaboration and power</P><P>Barbara Groot and Tineke Abma, with cases contributed by Annette Bilfeldt, Jackie Robinson, Genevieve Mannell and Candice Satchwell, and additional commentaries by Melanie Peterman and Ruud van Zuijlen</P><P></P><P>Chapter 3. Blurring the boundaries between researcher and researched, academic and activist </P><P>Anne MacFarlane and Brenda Roche, with cases contributed by Pinky Shabangu, Catherine Wilkinson, Mieke Cardol and Geralyn Hynes</P><P></P><P>Chapter 4. Community rights, conflict and democratic representation</P><P>Meghna Guhathakurta with cases contributed by Angela Contreras, Shaun Cleaver, Michael J. Kral, Monika Bjeloncikova and Vendula Gojova </P><B><P></P></B><P> </P><P>Chapter 5. Co-ownership, dissemination and impact</P><P>Gustaaf Bos and Tineke Abma, with cases contributed by Kate York, Sarah Marie Wiebe, Aila-Leena Matthies, Gustaaf Bos and Rafaella van den Bosch, and additional commentaries byTruus Teunissen and Doortje Kal</P><B><P></P></B><P>Chapter 6. Anonymity, privacy, and confidentiality</P><P>Kristin Kalsem with cases contributed by Alana Martin, Christine Lalonde, Lisa Boucher, Claire Kendall, Zack Marshall, Sarah Switzer, Carol Strike, Adrian Guta, Soo Chan Carusone, Michelle Brear, and Vu Song Ha </P><B><P></P></B><P>Chapter 7. Institutional ethical review processes</P><P>Adrian Guta, with cases contributed by Colin Bradley, Anne MacFarlane, Jane Jervis, Geralyn Hynes, and Jon Fieldhouse. </P><B><P></P><P> </P></B><P>Chapter 8. Social action for social change</P><P>Erin Davis and Cathy Vaughan, with cases contributed by Saskia Duijs, Vivianne Baur, Raquel Ignacio, Philile Mbatha and Jasmin Chen</P>
Cover; Title; Copyright; TABLE OF CONTENTS; List of tables; Notes on contributors; Preface and acknowledgements; 1 Ethics in participatory research; 2 Partnership, collaboration and power; Part 1 Introduction and overview of the issues; Part 2 Cases and commentaries; Case 2.1 Power inequities and ethical challenges in action research at public nursing homes in Denmark; Commentary on Case 2.1; Case 2.2 Participatory research with adults with Asperger's syndrome in the UK; Commentary on Case 2.2
Case 2.3 Researching gender-based violence in Rwanda: What do we really mean by 'building' local research capacity?Commentary on Case 2.3; Case 2.4 Starting as you mean to go on: Including young people in a participatory research project in the UK; Commentary on Case 2.4; Part 3 Concluding comments; 3 Blurring the boundaries between researcher and researched, academic and activist; Part 1 Introduction and overview of the issues; Part 2 Cases and commentaries
Case 3.1 Following research protocols versus being sensitive to informants' feelings: Ethical issues for a community researcher in Southern AfricaCommentary on Case 3.1; Case 3.2 Are you telling me this as a researcher or a friend? Ethical issues for a UK doctoral researcher; Commentary on Case 3.2; Case 3.3 The power and dilemmas of 'in between' and off-the-record: Participatory research with people with intellectual disabilities in The Netherlands; Commentary on Case 3.3; Case 3.4 When research becomes a therapeutic intervention: Using PhotoVoice in an Irish hospital; Commentary on Case 3.4
Part 3 Concluding comments4 Community rights, conflict and democratic representation; Part 1 Introduction and overview of the issues; Part 2 Cases and commentaries; Case 4.1 Doing research, advocating for human rights, and preserving community relations amongst migrant workers in Canada: A silence that (still) bothers; Commentary on Case 4.1; Case 4.2 Whose voice is included and whose should be loudest? Negotiating value systems with respect to leadership and membership in rural Zambia; Commentary on Case 4.2; Case 4.3 Suicide and well-being: A participatory study with Inuit in Arctic Canada
Commentary on Case 4.3Case 4.4 Working with community conflict and ethnic tensions in a 'socially excluded locality' in the Czech Republic; Commentary on Case 4.4; Part 3 Concluding comments; 5 Co-ownership, dissemination and impact; Part 1 Introduction and overview of the issues; Part 2 Cases and commentaries; Case 5.1 Disagreements about ownership of data and use of findings: Ethical issues in community-based health research in Tanzania; Commentary on Case 5.1; Case 5.2 Decolonizing research through documentary film? Indigenous environmental justice and community-engagement in Canada
Summary Participatory research is well-established as an approach involving people with a direct interest in, or experience of, the issue being studied in carrying out research. However, it raises unique and challenging ethical issues. Traditional concerns with respect for the rights to confidentiality, consent, privacy and protection of 'research informants' do not translate easily into participatory research. Boundaries between researchers and those researched are often blurred; research trajectories may be emergent and unpredictable; and major ethical issues revolve around partnership, power, equality and respect for diverse knowledges. The book introduces the key ethical issues in participatory research, drawing on ethical theory and relevant literature before presenting seven substantive chapters, each on a different theme, such as power, ownership, confidentiality and boundaries. The chapters feature an introductory overview of the topic with reference to the literature, followed by four real-life case examples written by participatory researchers and short commentaries on each case. Drawn from around the world (from Denmark to Tanzania), the cases illustrate a range of ethical issues, outlining how they were handled and the reflections and feelings of the contributors. Focusing on developing ethical awareness, confidence and courage to act in ethically challenging situations in everyday research practice, this book is an invaluable resource for all participatory researchers
Notes Commentary on Case 5.2
Print version record
Subject Biomedical Research -- ethics
Community-based research -- Ethics
Ethics, Research
Principle-Based Ethics
Human rights.
Human Rights
MEDICAL -- Nursing -- Research & Theory.
SOCIAL SCIENCE -- Social Work.
Human rights
Form Electronic book
Author Banks, Sarah, editor
Brydon-Miller, Mary, editor
ISBN 9781351605359
1351605356
9781351605342
1351605348
9781351605335
135160533X
9781315106847
1315106841
1138093416
9781138093416
1138093432
9781138093430