'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.
Patient and Public Involvement
looked after children
qualitative research
Journal
Health expectations : an international journal of public participation in health care and health policy
ISSN: 1369-7625
Titre abrégé: Health Expect
Pays: England
ID NLM: 9815926
Informations de publication
Date de publication:
08 2019
08 2019
Historique:
received:
21
11
2018
revised:
01
04
2019
accepted:
15
04
2019
pubmed:
23
5
2019
medline:
15
9
2020
entrez:
23
5
2019
Statut:
ppublish
Résumé
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. 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. 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. The qualitative interviews were transcribed verbatim. Thematic analysis was used to analyse the data, and direct quotes are used within the paper. 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. 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.
Sections du résumé
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.
Identifiants
pubmed: 31115138
doi: 10.1111/hex.12904
pmc: PMC6737768
doi:
Types de publication
Journal Article
Research Support, Non-U.S. Gov't
Langues
eng
Sous-ensembles de citation
IM
Pagination
657-665Subventions
Organisme : Medical Research Council
ID : MR/K02325X/1
Pays : United Kingdom
Organisme : Department of Health
ID : PHR/14/183/08
Pays : United Kingdom
Organisme : NIHR Public Health Research Programme
ID : ISRCTN80786829
Pays : International
Organisme : Catherine Cookson Foundation
Pays : International
Informations de copyright
© 2019 The Authors Health Expectations published by John Wiley & Sons Ltd.
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