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'You've come to children that are in care and given us the opportunity to get our voices heard': The journey of looked after children and researchers in developing a Patient and Public Involvement group

Lookup NU author(s): Dr Hayley AldersonORCiD, Dr Rebecca Brown, Debbie Smart, Dr Raghu Lingam, Dr Gail Dovey-Pearce



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.BACKGROUND: Looked after children and care leavers (denoted as LAC) are often described as a 'hard to reach' group of young people, and their voices are rarely sought to inform academic research. METHODS: This paper reports on experiences and reflections of a group of children and young people and academic researchers who developed a Patient and Public Involvement (PPI) group that was set up in the context of an ongoing health service intervention trial with LAC. SETTING AND PARTICIPANTS: Eighteen qualitative semi-structured interviews were conducted with seven LAC, the participation officer within a North East Children in Care Council and the four researchers involved in developing and facilitating the PPI group. PPI sessions (n = 9) each approximately 1 hour in length were conducted over an 18-month period. ANALYSIS: The qualitative interviews were transcribed verbatim. Thematic analysis was used to analyse the data, and direct quotes are used within the paper. MAIN OUTCOMES: The LAC used the PPI group to produce a 5-minute video to highlight why they think young people should be involved in research. Overall findings suggested that it was feasible to develop a research-related PPI group with LAC. Findings from the research were used to co-develop 'top tips' of working with vulnerable young people such as looked after children. CONCLUSION: This paper has shown that PPI with LAC can be done if a co-production approach to research is taken. It also suggests that assumptions regarding the capabilities of young people as researchers need to be re-evaluated.

Publication metadata

Author(s): Alderson H, Brown R, Smart D, Lingam R, Dovey-Pearce G

Publication type: Article

Publication status: Published

Journal: Health Expectations

Year: 2019

Volume: 22

Issue: 4

Pages: 657-665

Online publication date: 21/05/2019

Acceptance date: 15/04/2019

Date deposited: 24/09/2019

ISSN (electronic): 1369-7625

Publisher: Wiley


DOI: 10.1111/hex.12904

PubMed id: 31115138


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