‘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.

The attitudes of healthy children and researchers towards the challenges of involving children in research: an exploratory study

“…They stated that children should receive an appropriate reward and recognition for their contributions, to demonstrate that their time, commitment, and expertise are valued [ 30 ]. The list was used in two studies to determine what reward children should receive in child-inclusive research [ 13 , 14 ]. Mitchel and colleagues recommended giving children ‘Thank You’ certificates, vouchers, and events organized in partnership with the PPI group [ 24 ].…”

“…Calls appeared in the literature for research groups to share their experiences regarding the lessons learnt and the challenges encountered. Their aim was to thus establish best practice guidelines for meaningful child-inclusive research [ 11 – 14 ]. Hoven and colleagues interviewed paediatric patients about their experiences as research partners [ 15 ].…”

Patient and public involvement in a study of multimedia clinical trial information for children, young people and families

“…Consistent with previous work (Oliver et al, 2015;Alderson et al, 2019), further strengths identiied included timely and open communication with members, especially when providing them with feedback on their contributions; poor or non-existent feedback has been criticized by public involvement contributors in other studies (Ashcroft et al, 2016;Brett et al, 2014a). Members also noted the beneit of having clearly deined roles, which are important in ensuring members are not disappointed or confused by the nature of their involvement (Brett et al, 2014a).…”

“…Recruitment of members to the PPAG was opportunistic and aided by the chairperson, who already had contacts through her national role as a public involvement manager. We did not actively target hard-to-reach groups, although we did discuss this issue with members during writing workshops and agreed on the need for more diversity within public involvement (Brett et al, 2014a;Alderson et al, 2019;Ashcroft et al, 2016;Mitchell et al, 2019). We also acknowledge that the majority of our members were female and were older than the TRECA study demographic (children and young people aged 6 to 18 years).…”

“…The importance of pre-planning, involving members early in the study, and being mindful of the use of jargonistic and technical language by researchers has also been noted (Buck et al, 2014). The current body of knowledge in this area is concentrated on the involvement of adults, although there is a growing literature on the experiences of involving children and young people (Bate et al, 2016;Parsons et al, 2018;Alderson et al, 2019;Dovey-Pearce et al, 2019;Brady and Preston, 2017;Bird et al, 2013;Nufield Council on Bioethics, 2015;Kellett, 2005;Forsyth et al, 2019). For example, children and young people have been involved in the design of interventions for clinical trials (Boote et al, 2016) and in synthesizing evidence from systematic reviews (Oliver et al, 2015).…”