Abstract / Summary
Introduction: Co-production is becoming an established methodology in mental health research, yet there remains a lack of condition-specific frameworks to guide its design and implementation. For bipolar disorder in particular, there is limited evidence on how to meaningfully engage lived experience experts in the context of possible mood instability and other impairments. This paper presents insights from a consultation with people with lived experience of bipolar disorder, aimed at developing recommendations for conducting co-production with people with bipolar.
Methods: A one-off, 1-h online consultation was conducted with four members of the AMBIENT-BD Lived Experience Advisory Panel (LEAP). The consultation used a semi-structured focus group format, guided by a topic guide, to explore strategies for recruiting and engaging co-producers in bipolar disorder research. Data were analysed using reflexive thematic analysis.
Results: Four overarching themes were developed: (i) Communicating with co-producers- capturing how trusted channels and regular contact support recruitment and sustained engagement; (ii) Providing accessible information- addressing the need to balance sufficient detail with readable, low-burden formats during periods of instability; (iii) Building and sustaining trust- highlighting trust in the research process and partnerships with third-sector organisations as preconditions for meaningful involvement; and (iv) Perceived impact as a motivator- reflecting how community belonging and tangible incentives shape willingness to participate. A provisional set of practical recommendations was derived from these themes, including recruiting through trusted organisations, using non-technical language and multiple formats, offering meaningful incentives, and using low-burden communication methods during periods of unwellness.
Conclusion: Grounded in lived experience perspectives, this paper conceptualises co-production as a relational process in which trust, accessible communication and visible impact form the foundation for meaningful engagement with people with bipolar disorder. Positioned as a consultative contribution on the IAP2 Spectrum of Public Participation, the paper offers practical, mental health-specific guidance for researchers seeking to develop advisory groups and other participatory approaches with the bipolar population.
Patient/public contribution: This study has been conducted in partnership with people with lived experience of bipolar disorder. They were involved in the conceptualisation, design and data collection of the study. They helped to inform the process of conducting a co-production with people with bipolar disorder. Findings from the consultation were shared with them in a separate feedback session.