Gaps in the Engagement of People With Lived and Living Experience and Caregivers in Mental Health and Substance Use Health Research: A Qualitative Study of Untapped Potential.

backgroundPeople with lived/living experience and family/caregivers (PLLEX-C) can be engaged in mental health and substance use health research in roles such as advisors, collaborators, and co-researchers. While there is a substantial body of research describing the barriers and facilitators to effective lived experience engagement, the actual contributions that PLLEX-C are making to the research remains under-explored. This qualitative descriptive study aimed to explore new areas where PLLEX-C can contribute to the research process. We wanted to understand gaps in the contributions of PLLEX-C and how we can provide opportunities to grow and enhance their contributions to the research in which they are engaged.

methodsA Canada-wide sample of 28 PLLEX-C took part in one of five focus groups, while 12 researchers from across Canada took part in individual interviews using a co-designed semi-structured interview guide. Discussions were recorded, transcribed, and analyzed using codebook thematic analysis. We engaged PLLEX-C throughout the course of the study.

resultsGaps in the engagement of PLLEX-C were found across the research lifecycle. This included key aspects of project initiation, like establishing research questions and priorities, contributing to grant applications, and contributing to ethics processes. Gaps were also encountered in the research operations process, in terms of recruitment processes and data analysis. Lastly, gaps at the end-of-grant knowledge translation stage included manuscript co-authorship and co-presentation at conferences or other events.

conclusionsPLLEX-C are willing to be engaged in research across the research lifecycle, but many have experienced areas of untapped potential. To develop appropriate engagement plans for a given project, it is important to have open discussions with the PLLEX-C engaged to understand their areas of skill, interest, and professional development goals, as well as barriers to full engagement in some stages of the project. This will make it possible to co-design a creative and flexible personalized engagement plan that is meaningful to them and maximizes their engagement potential. This process will ensure that authentic engagement overrides tokenistic practices. PATIENT ENGAGEMENT: This study was conducted on lived/living experience engagement and the team includes people with lived/living experience. A lived/living experience working group contributed to the design and operation of the project, as well as to data analysis, interpretation, and co-authorship.