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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.
Health Expect. 2019 08; 22(4):657-665.HE

Abstract

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.

Authors+Show Affiliations

Institute of Health and Society, Newcastle University, Newcastle Upton Tyne, UK.Institute of Health and Society, Newcastle University, Newcastle Upton Tyne, UK.Institute of Health and Society, Newcastle University, Newcastle Upton Tyne, UK.Faculty of Medicine, University of New South Wales, Sydney, New South Wales, Australia.Northumbria Healthcare NHS Foundation Trust, North Shields, UK.

Pub Type(s)

Journal Article
Research Support, Non-U.S. Gov't

Language

eng

PubMed ID

31115138

Citation

Alderson, Hayley, et al. "'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." Health Expectations : an International Journal of Public Participation in Health Care and Health Policy, vol. 22, no. 4, 2019, pp. 657-665.
Alderson H, Brown R, Smart D, et al. '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. Health Expect. 2019;22(4):657-665.
Alderson, H., Brown, R., Smart, D., Lingam, R., & Dovey-Pearce, G. (2019). '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. Health Expectations : an International Journal of Public Participation in Health Care and Health Policy, 22(4), 657-665. https://doi.org/10.1111/hex.12904
Alderson H, et al. '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. Health Expect. 2019;22(4):657-665. PubMed PMID: 31115138.
* Article titles in AMA citation format should be in sentence-case
TY - JOUR T1 - '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. AU - Alderson,Hayley, AU - Brown,Rebecca, AU - Smart,Debbie, AU - Lingam,Raghu, AU - Dovey-Pearce,Gail, Y1 - 2019/05/21/ PY - 2018/11/21/received PY - 2019/04/01/revised PY - 2019/04/15/accepted PY - 2019/5/23/pubmed PY - 2020/9/15/medline PY - 2019/5/23/entrez KW - Patient and Public Involvement KW - looked after children KW - qualitative research SP - 657 EP - 665 JF - Health expectations : an international journal of public participation in health care and health policy JO - Health Expect VL - 22 IS - 4 N2 - 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. SN - 1369-7625 UR - https://www.unboundmedicine.com/medline/citation/31115138/'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_ L2 - https://doi.org/10.1111/hex.12904 DB - PRIME DP - Unbound Medicine ER -