Exploring the impact of engagement in mental health and substance use research: A scoping review and thematic analysis.

BACKGROUND: There is growing evidence demonstrating the impact of engaging people with lived experience (PWLE) in health research. However, it remains unclear what evidence is available regarding the impact of engagement specific to mental health and substance use research. METHODS: A scoping review of three databases and thematic analysis were conducted. Sixty-one articles that described the impact of engagement in mental health and substance use research on either individual experiences or the research process were included. RESULTS: Key topics include (a) the impact of engagement on individual experiences; (b) the impact of engagement on the research process; and (c) facilitators and barriers to impactful engagement. Studies largely focused on the perceived positive impact of engagement on PWLE (e.g., personal and professional growth, empowering and rewarding experience, feeling heard and valued), researchers (e.g., rewarding experience, deeper understanding of research topic, changes to practice), and study participants (e.g., added value, fostered a safe space). Engagement activities were perceived to improve facets of the research process, such as improvements to research quality (e.g., rigour, trustworthiness, relevance to the community), research components (e.g., recruitment), and the research environment (e.g., shifted power dynamics). Facilitators and barriers were mapped onto the lived experience, researcher, team, and institutional levels. Commonly used terminologies for engagement and PWLE were discussed. CONCLUSION: Engaging PWLE-from consultation to co-creation throughout the research cycle-is perceived as having a positive impact on both the research process and individual experiences. Future research is needed to bring consistency to engagement, leverage the facilitators to engagement, and address the barriers, and in turn generate research findings that have value not only to the scientific community, but also to the people impacted by the science. PATIENT OR PUBLIC CONTRIBUTION: PWLE were engaged throughout the scoping review process, including the screening phase, analysis phase, and write-up phase.

Research evidence and implementation gaps in the engagement of people with lived experience in mental health and substance use research: a scoping review.

BACKGROUND: There is growing recognition that engaging people with lived experience (PWLE) in mental health and substance use research improves the quality of the research in terms of relevance to the population and the feasibility of the work. Engagement also provides positive opportunities for research teams and the PWLE engaged. However, there are many gaps in the research on PWLE engagement. This scoping review synthesizes the gaps in the implementation of PWLE engagement and in the research on engagement as presented by research teams engaging PWLE in their work. METHOD: A systematic electronic database search was conducted in 2022 for published articles on PWLE engagement in mental health and substance use research. Potential articles were screened for relevance. The search led to 49 final articles included in the review. The 49 articles were then coded using codebook thematic analysis to answer two research questions: (1) What are the research evidence gaps regarding the engagement of PWLE in mental health and substance use research?; and (2) What are the gaps in implementing PWLE engagement in mental health and substance use research? PWLE were engaged in the conduct of this review. RESULTS: Results showed that research evidence gaps include further work on conceptualizing engagement; developing resources, tools, and practice recommendations to support research teams; increasing diversity in evaluations of engagement; and evaluating engagement, including its impact on the research, on PWLE, and on researchers. Implementation gaps included several broader institutional gaps and gaps in the day-to-day practice of engagement. CONCLUSIONS: Despite progress in PWLE engagement in mental health and substance use research in recent years, research evidence and implementation gaps remain. Research teams are encouraged to consider these gaps and conduct research and implementation activities to address them in a rigorous manner.

There is growing recognition that engaging people with lived experience (PWLE) in mental health and substance use research improves the quality of the research by making it more relevant to the population and more feasible. Engagement also provides positive opportunities for those working in this way. However, many questions remain unanswered in terms of PWLE engagement. We reviewed the published literature to identify gaps in the research on PWLE engagement and on the ways PWLE engagement is practiced in mental health and substance use research. We identified 49 articles addressing these issues. We examined each article to identify (1) research evidence gaps regarding the engagement of PWLE in mental health and substance use research; and (2) gaps in the way PWLE engagement is put into place in mental health and substance use research. We found that research evidence gaps include the need for further research work to understand what engagement and lived experience are; the need to develop resources, tools, and practice recommendations to support PWLE engagement; the need to increase the diversity of the PWLE engaged; and the need to evaluate the impact of engagement on the research, on PWLE, and on researchers. Gaps in the practice of PWLE engagement included several broader institutional gaps and gaps in the day-to-day practice. Despite progress in PWLE engagement in research in recent years, many gaps remain. Research teams are encouraged to conduct research to clarify these aspects of engagement and to implement engagement in ways that address these gaps.