‘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

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.