A systematic review of community-based participatory research studies involving individuals with mental illness

This systematic review examined community-based participatory research (CBPR) studies in which people with mental illness (PWMI) directly contributed to research projects. The purpose was to describe study characteristics, team structure and logistics, and level of involvement of in the research process.

We searched the PsycINFO database from January 2000 to July 2020, identifying 1,395 records and analyzing the 31 that met inclusion criteria. Articles were eligible if they were (a) published in English in a peer-reviewed journal; (b) explicitly stated that at least one adult with mental illness assisted with the study as a CBPR team member; and (c) included a research outcome.

Most studies collected qualitative data. Project length, team composition, and frequency of meetings were not specified in about one third of the articles. Twenty-nine studies reported involvement of people with mental illness in research activities such as recruitment, data collection, transcription, and analysis. Nearly half did not specify if they received any training.

Individuals with mental illness were heavily involved in planning and conducting research, demonstrating the feasibility of meaningful involvement. Future research should consider how people with lived experience can assist with quantitative methods, and articles should clearly and explicitly describe characteristics of the partnership (e.g., team composition, frequency of meetings, compensation). The protocol is published in Open Science registry at https://osf.io/mshfb. (PsycInfo Database Record (c) 2024 APA, all rights reserved).