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

Lookup NU author(s): Dr Gail Dovey-Pearce, Dr Monica Parker, Professor Tim Rapley



This work is licensed under a Creative Commons Attribution 4.0 International License (CC BY 4.0).


© 2019 The Authors Health Expectations published by John Wiley & Sons Ltd.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.

Publication metadata

Author(s): Dovey-Pearce G, Walker S, Fairgrieve S, Parker M, Rapley T

Publication type: Article

Publication status: Published

Journal: Health Expectations

Year: 2019

Volume: 22

Issue: 3

Pages: 465-474

Print publication date: 01/06/2019

Online publication date: 15/02/2019

Acceptance date: 06/01/2019

Date deposited: 18/06/2019

ISSN (print): 1369-6513

ISSN (electronic): 1369-7625

Publisher: Wiley-Blackwell


DOI: 10.1111/hex.12870


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