“What Do You Need? What Are You Experiencing?” Relationship Building and Power Dynamics in Participatory Research Projects: Critical Self-Reflections of Researchers

Doris Arnold, Andrea Glässel, Tabea Böttger, Navina Sarma, Andreas Bethmann and Petra Narimani
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Doris Arnold: Department of Social Work and Health Care, Ludwigshafen University of Business and Society, 67059 Ludwigshafen, Germany
Andrea Glässel: Institute of Biomedical Ethics and History of Medicine, University of Zurich, 8006 Zurich, Switzerland
Tabea Böttger: Institute of Health Science, Faculty of Medicine, University of Lübeck, 23562 Lübeck, Germany
Navina Sarma: Department of Infectious Disease Epidemiology, Robert Koch Institute, 13353 Berlin, Germany
Andreas Bethmann: Centre for International Health Protection (ZIG), Robert Koch Institute, 13353 Berlin, Germany
Petra Narimani: Protestant University of Applied Sciences Berlin (EHB), 14167 Berlin, Germany

IJERPH, 2022, vol. 19, issue 15, 1-25

Abstract: Participatory approaches create opportunities for cooperation, building relationships, gaining knowledge, rethinking, and eventually changing power structures. From an international perspective, the article looks at the historical development of different participatory approaches in which building relationships and managing the balance of power between persons engaged in participatory research are central. The authors present and critically reflect on four research projects to show how they understood and implemented participatory research in different ways and what they have learned from their respective experiences. The “PaSuMi” project worked in the context of addiction prevention with migrants and provides a glimpse into different contexts of participatory research. The initiator of the study “Back into life—with a power wheelchair” works with post-stroke individuals who use the assistive device in community mobility and reflects on the shifting and intertwining roles of participants. In the research project “Workshops for implementation of expanded community nursing”, new professional roles for nurses in community nursing were developed; here limitations to participation and ways to deal with them are illustrated. Finally, the “DIPEx” project deals with challenges of enabling participation of persons with multiple sclerosis via narrative interviews on the experience of health and illness. All examples underline the necessity of a permanent reflection on relationships and power dynamics in participatory research processes.

Keywords: participatory research; participation; health; power; reflection; research relationships; understanding of roles in research; error culture; DIPEx (search for similar items in EconPapers)
JEL-codes: I I1 I3 Q Q5 (search for similar items in EconPapers)
Date: 2022
References: View references in EconPapers View complete reference list from CitEc
Citations: View citations in EconPapers (1)

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