The burden of proof: The process of involving young people in research

Dovey-Pearce, Gail, Walker, Sophie, Fairgrieve, Sophie, Parker, Monica and Rapley, Timothy (2019) The burden of proof: The process of involving young people in research. Health Expectations. ISSN 1369-6513 (In Press)

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Patient and public involvement in research includes non‐academics working with researchers, on activities from consultative tasks, to joint working, and on user‐led initiatives. Health and social care funding bodies require involvement in research projects. A current debate focuses on a perceived lack of empirical “proof” to demonstrate the impact of involvement upon the quality of research. It is also argued that the working relationships between researchers and those becoming involved need to be understood more fully. These areas are beginning to be reported upon but there are few studies of young people involved in health research. This study describes the experiences of adult academics and young people, working together on a large‐scale, UK health research programme. Using qualitative interview and focus group methods, the aim was to explore participants’ perceptions about the process and outcomes of their work together. The importance of cyclical, dynamic and flexible approaches is suggested. Enablers include having clear mechanisms for negotiation and facilitation, stakeholders having a vision of “the art of the possible,” and centrally, opportunities for face‐to‐face working. What is needed is a continuing discourse about the challenges and benefits of working with young people, as distinct from younger children and adults, understanding the value of this work, without young people having to somehow “prove” themselves. Involvement relies on complex social processes. This work supports the view that an improved understanding of how key processes are enabled, as well as what involvement achieves, is now needed.

Item Type: Article
Uncontrolled Keywords: involvement, participation, patient and public involvement, research, young people, young researchers, youth research
Subjects: L900 Others in Social studies
X900 Others in Education
Department: Faculties > Health and Life Sciences > Social Work, Education and Community Wellbeing
Depositing User: Becky Skoyles
Date Deposited: 21 Feb 2019 09:13
Last Modified: 28 Feb 2019 16:00

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