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The objective was to identify methods used to involve patients, family and service providers in child and youth mental health service improvement research. We analyzed the alignment of methods used with Experience-Based Co-Design (EBCD) methodology, and how power imbalances among participants were addressed. A systematic review of the English-language peer review literature since 2004 was carried out. The EMBASE, Scholar’s Portal, PubMed, Web of Science databases and the Ontario College of Art and Design University libraries were searched electronically for variations of ‘child’, ‘mental health’, ‘experience-based co-design’, ‘participatory research’ and ‘health care services’. Textual data was systematically extracted and analyzed. The electronic search identified 1468 articles; 13 remained following full text review and reference checking. Many participatory research studies in child and youth mental health were consistent with core elements of the EBCD methodology, but few focused on experiences and incorporated the perspectives of all participants throughout the research process. Story telling and visual media, employing youth as researcher partners, establishing equal status among participants, offering counseling support, paying particular attention to confidentiality, scheduling frequent breaks, and having skilled interviewers and facilitators were suggested methods to address power imbalances for this vulnerable population. Conclusion-The existing child and youth mental health participatory research literature aligns considerably with many elements of EBCD methodology and suggests diverse approaches to address power imbalances. More systematic application of the full range of elements will help to achieve patient centeredness and recovery in mental health and for other vulnerable populations.

patient experience journal

Applying experience-based co-design with vulnerable populations: Lessons from a systematic review of methods to involve patients, families and service providers in child and youth mental health service improvement