ArticleHealth expectations : an international journal of public participation in health care and health policy2026
'Working Together to Meet in the Middle'. A Qualitative Descriptive Study of Power Dynamics in Lived Experience and Family Engagement in Mental Health and Substance Use Health Research.
Article in Health expectations : an international journal of public participation in health care and health policy, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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Abstract
backgroundEngaging people with lived experience (PWLE) and family members (/F) in mental health and/or substance use health research is an increasingly common practice and has many benefits. However, challenges are also encountered; these challenges include the experience of unequal power dynamics on research teams.
objectiveThis pragmatic qualitative descriptive study aimed to understand the experience of power dynamics in mental health/substance use health research engagement contexts, using an engagement framework.
methodFour focus group discussions were conducted with 18 PWLE/F aged 19-79 who had experience engaging in mental health and/or substance use research. A co-designed semi-structured interview guide was used. Discussions were audio recorded, transcribed, analysed using codebook thematic analysis and discussed with a Lived Experience Working Group.
resultsThree primary themes were generated from the data: (1) Leadership, knowledge and expertise generate power. (2) Power dynamics should be acknowledged and balanced to improve research quality. (3) Power can be shared through authentic engagement practices.
conclusionsWhile knowledge and expertise generate power, researchers are not the only ones to hold knowledge and expertise, which necessitates the sharing of power. The mitigating strategies to help research teams address power are consistent with recommendations for conducting authentic engagement as a whole. Following best practices for PWLE engagement can help balance power dynamics on engaged research teams. LIVED EXPERIENCE CONTRIBUTION: All aspects of this study were guided by a Lived Experience Working Group, from the identification of the research question to the interpretation and reporting of the results. People with lived experience and family members are co-authors on this manuscript.
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