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Ethical Research Involving Children

Rhetoric to reality: Challenges and opportunities for embedding young people’s involvement in health research.

Brady, L-M. (2020). Rhetoric to reality: Challenges and opportunities for embedding young people’s involvement in health research. In H. McLaughlin, P. Beresford, C. Cameron, H. Casey, & J. Duffy (Eds.), The Routledge Handbook of Service User Involvement in Human Services Research and Education (pp. 454-466). Routledge: Abingdon. eBook ISBN: 9780429433306.

Abstract: Whilst there is growing awareness of the case for children and young people’s participation across the public sector, there is limited evidence on how this apparent commitment to participation and children’s rights translates into professional practice and young people’s experience of involvement in health services and research. There are also disparities in the characteristics of young people likely to be involved, the types of decisions they are involved in making, and the extent to which this involvement is meaningful and effective.
Involvement should lead to research, and ultimately services, that better reflect young people’s priorities and concerns. This is especially important for young people deemed to be more ‘vulnerable’, whose voices are often absent from the literature. This chapter draws on learning from a research study which involved young people with experience of drug and alcohol services, as well as a project which sought to evaluate the extent and impact of young people’s involvement in National Institute for Health Research (NIHR) research.
This chapter outlines how young people’s involvement in health research is still conceptualised primarily as adult-initiated, context-specific collective involvement in formal settings. This potentially excludes some of the young people most likely to use health services and limits the potential for fundamental change. The chapter will explore the potential for new approaches which would do more to transfer power to young people, and present a rights-based framework for embedding young people’s involvement in ways that are meaningful, effective and sustainable. (Abstract © Routledge, reprinted by special permission from Taylor & Francis Group, a division of Informa UK, This book is available as an ebook.

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