Systematic Review: Patient and Public Involvement of Children and Young People in Mental Health Research.

Abstract

Objective: Patient and public involvement (PPI) is an essential ethical component in mental health research, and represents a major opportunity to improve translational mental health research. The goals of this review were to (1) provide a comprehensive overview of empirical research focusing on PPI of children and young people (CYP) in mental health research studies; (2) evaluate the results with CYP and parents of those affected; and (3) derive recommendations for PPI of CYP in future mental health research studies.

Methods: Based on an extensive literature review following the PRISMA guidelines, studies including CYP (age range: 0-21 years) in mental health research were identified and examined along a two-part analysis process considering their usability for mental health research. The conclusions drawn from the studies concerning CYP involvement were summarized and recommendations derived.

Results: Overall, 19 articles reported PPI of CYP (age range: 10-26 years) in mental health research and were included for further analyses. The integrated studies differed in the type of PPI, and in the way the participation and involvement processes were presented.

Conclusion: Progress has been made in engaging CYP in mental health research, but there is a need for international standards, operationalization, and evaluation measures. Future research should go beyond merely reporting the PPI process itself. It should clearly indicate how and to what extent feedback from these PPI members was incorporated throughout the research process.