Review: Patient engagement in child, adolescent, and youth mental health care research - a scoping review

Abstract

Background: Youth and children's lived experiences are rarely considered in studies seeking to improve or evaluate their mental health care. We conducted a scoping review to identify approaches to child, adolescent, and youth engagement in mental health studies as well as study-reported barriers, constraints, and facilitators to engagement.

Method: We systematically searched six electronic databases for literature. We included studies of mental health care service design, development, or evaluation that involved engagement of children, adolescents, and/or youth with mental disorders or who intentionally self-harm. Studies could be of any design as long as patient engagement was used at any point during its design and/or conduct. Engagement could include co-designing health services/interventions and/or participating as a co-researcher. We assessed the reporting of patient engagement using the Guidance for Reporting Involvement of Patients and the Public 2 Long-Form (GRIPP2-LF) checklist and used the Experience Based Co-design (EBCD) framework to guide data extraction and analysis.

Results: Sixteen articles were included in the review. Most studies used engagement to develop or adapt a mental health service (75%) and utilized a participatory or co-design approach (69%). Participants were namely adolescents and youth (aged 10-24 years) with some studies including young adults (up to 29 years old). Most studies followed less than 50% of the EBCD framework, and the commonly reported study barriers were related to aspects addressed in EBCD: time restrictions, recruitment, and generalizability. Frequently reported study facilitators included study methodology, youth engagement, and having a diverse participant sample.

Conclusions: Findings from this review suggest that the EBCD framework is not commonly used to guide patient engagement in studies of mental health care services. Future initiatives should consider following the framework to ensure meaningful evaluation and improvements to youth and children's mental health care services.

Keywords: Patient engagement; experience-based co-design; mental health; patient participation; youth engagement.