ArticleResearch involvement and engagement2025
"Inclusivity requires an active effort": building an inclusive and diverse space when engaging people with lived and living experience and caregivers in mental health and substance use health research.
Article in Research involvement and engagement, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.
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Who cites it
1 citing paper in PubMed.
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9 authors.
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Abstract
backgroundEngaging people with lived/living experience and caregivers (PLLEX-C) in mental health and substance use health research has many advantages for scientists, research staff, and PLLEX-C. However, research teams must be cognizant of the wide spectrum of human diversity. As such, engagement settings that are inclusive and reflect the diversity of the populations being served are essential to meaningful and impactful research.
objectiveThe aim of this qualitative descriptive study was to understand the perspectives of PLLEX-C on how to build inclusive and diverse research spaces when engaging PLLEX-C in mental health and substance use health research.
methodsWe recruited 20 PLLEX-C with experience engaging in mental health and substance use health research to participate in one of five focus group discussions. The focus groups were audio recorded and transcribed, with codebook thematic analysis conducted using a deductive and inductive approach. This study team included a Lived and Living Experience and Caregiver Working Group throughout all phases of the research project.
resultsFour themes were identified across the five focus group discussions: 1) Acknowledge that diversity is inclusive of different factors and this needs to be reflected in the recruitment process to improve the research. 2) Remove barriers of entry into the research space. 3) Ensure that the scientists and staff are trained and skilled in inclusive and diverse engagement. 4) Build a safe and equitable engagement space. Within these themes, subthemes were also identified and described with illustrative quotes.
conclusionsIdentifying ways to ensure research engagement settings are inclusive and diverse for all those involved requires an intentional and active effort at all stages of the research process. This includes not only employing various recruitment strategies to identify more diverse PLLEX-C, but also continuous, ongoing training for researchers to ensure engagement is culturally sensitive, anti-discriminatory, and bias-free. Prioritizing research teams that are inclusive and diverse can foster an engagement experience that is more meaningful, authentic, and empowering.
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