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

Abstract

BackgroundThere 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.MethodsA 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.ResultsKey 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.ConclusionEngaging 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 ContributionPWLE were engaged throughout the scoping review process, including the screening phase, analysis phase, and write‐up phase.

‘ALL ABOUT MY IDEAL MENTAL HEALTH SERVICE’: Users, family members and experts by experience discussing a co‐designed service

“…The collaboration was focused on answering the research question, exploring the relevant scientific literature and sharing the results of the data analysis. The sharing of the purpose, material, analysis and writing of the paper followed the guidelines on the co‐design and co‐production of the research 41,42 …”

The elephant in the room: Family engagement in mental health and substance use research

“…1 People and communities with lived experience can be included in all aspects of research processes, which is increasingly encouraged by funding bodies and institutions. While engagement has grown rapidly in recent years, 2 the movement is built upon decades of progressive experience in decentring academic work across disciplines through key informant collaboration. Lived experience engagement in research, also known as 'patient engagement' or 'patient and public involvement', provides many benefits to the research process, as PWLE are subject-matter experts and key stakeholders.…”

“…PWLE engagement occurs across the health disciplines, in a wide variety of research designs, including an extensive body of mental health and substance use research. 2 Engaging PWLE promotes the inclusion of perspectives that matter, and stimulates the healing of the injustices of past and current imbalances and inequities in health care and research settings. To ensure that engagement is meaningful and not tokenistic, and thus remains ethically conscious, it is important to reflect on the conceptualization of engagement: what is engagement, who is engaged, and why?…”

“…Engagement in research can have many positive impacts. 2 However it can also have negative impacts when conducted tokenistically or otherwise inappropriately, through erasure, marginalization, and stigmatization. Family members, who may feel marginalized, excluded, and even traumatized as they navigate the mental healthcare system with their loved one, can be further marginalized, excluded, and traumatized if they are engaged tokenistically, 5 doing more harm than good as they relive their traumas.…”

“…Other factors important to consider in family engagement include complex family dynamics and the impact of stigma and marginalization, alongside the many barriers to effective lived experience engagement. 2 For family members, as for PWLE, it is important to conduct engagement in ways that are genuine, accessible, inclusive, destigmatizing, empathetic and trauma-informed. 6 However, there is a dearth of literature specific to family engagement in mental health and substance use research.…”