ArticleBMC health services research2025
From lived experience to leadership: establishing a stakeholder advisory board to guide first-episode psychosis research and services.
Article in BMC health services research, 2025. 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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7 authors.
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Abstract
backgroundAdvisory boards incorporating people with lived experience (PWLE) with psychosis substantially enhance first-episode psychosis (FEP) services. This study aimed to develop an advisory board including persons with lived experience (PWLE) and different stakeholders, specifically for first-episode psychosis.
objectiveTo develop and pilot test a first-episode psychosis advisory board involving people with lived experience (PWLE), caregivers, and different stakeholders. METHODOLOGY: This research employed a two-phase exploratory approach and mixed method: Phase 1, with critical analysis of existing manuals on advisory board development, in-depth interviews with professionals from different backgrounds, co-design & manual development and manual evaluation. Phase 2 consists of piloting the advisory board by recruiting the members, training and piloting the board via the developed manual and finally evaluating the developed advisory board.
resultsPhase 1 analysis, based on in-depth interviews with 19 stakeholders, revealed limited initial awareness of advisory boards. The manual was developed by adapting 2 manuals (screened from 10) and incorporating expert insights. A panel of 10 experts evaluated the manual, yielding a high overall content validity score of 83.8%, with strong scores in General Feedback (86.0%) and Content Assessment (84.7%). For Phase 2, 13 members (selected from 75 applicants) were recruited. Following a 6-month, 12-session pilot, focus groups with all 13 members emphasized the importance of training, structured processes, and effective communication.
conclusionThis study addresses a critical gap by developing an inclusive advisory board using a multi-pronged approach. The findings underscore the value of a multifaceted approach. Future research should utilize established frameworks to assess board effectiveness and sustainability, ultimately strengthening FEP services. This pioneering manual serves as a template for healthcare institutions to establish advisory boards that integrate diverse stakeholders, including those with lived experiences of psychosis. CLINICAL TRIAL NUMBER: Not applicable.
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