Background: We recently completed a project which involved two linked systematic reviews and an overarching synthesis evaluating the effectiveness and experiences of mental-health interventions for children and young people (CYP) with long-term physical conditions. We involved CYP throughout the project from planning to dissemination of the findings.
Aim: To describe the process of involvement of CYP within a linked-evidence synthesis project, share the outcomes and reflect on lessons learned.
Methods: CYP with lived experience of long-term conditions (LTC) and mental-health difficulties were invited to attend a series of 4 events held at Great Ormond Street Hospital in London. Each event was structured around a series of activities to facilitate discussion. Activities were devised to aid reviewers’ understanding of emerging findings and influence the developing project. CYP also provided feedback on the definition of key terms and methods of dissemination. Parents attended the final 2 events to discuss issues relevant to families. CYP and their parents helped prepare dissemination materials including plain-language summaries and a podcast. All involvement was co-ordinated by a dedicated member of the research team.
Impact: Insights from CYP were crucial to the synthesis at all stages. CYP gave feedback on outcomes identified within the review of effectiveness and provided ideas which contributed towards the development of themes or categories in the review of experiences and in the overarching synthesis. Their knowledge of the project enabled them to develop accessible materials summarising the findings, which were disseminated to children, families and a range of organisations. CYP enjoyed taking part in the consultation because it gave them the chance to meet their peers, share experiences of living with an LTC and contribute towards disseminating findings relevant to their own lives.
Conclusions: Involvement of CYP throughout the project allowed us to reflect the experiences of those with the most insight, enhanced the applicability of the findings and enabled the CYP to connect with others in similar situations.