Using Integrated Experience-Based Co-Design to Promote Mental Health Service Design Improvements With Informal/Family Carers of Adults From LGBTQ Communities

Abstract

Co-design research and evaluation methodologies are being increasingly adopted as a preferred approach for mental health research. However, research on the effectiveness and impacts of co-design involving carers is scarce. This article discusses how to conduct research using an integrated experience-based co-design method. It includes issues considered during the formation of the research team and during the study design and implementation. We found integrated experience-based co-design useful throughout the conceptualization and implementation phases of the research moving beyond reporting of carers’ experiences of services to actual engagement in mental health service design. Key factors contributing the success of this process were the inclusion of members of some of the lesbian, gay, bisexual, transgender, gender diverse, intersex, and queer communities on the research team as well as having researchers with personal and/or practical experience, of mental health services, and as carers and consumers of mental health services. Integrated experience-based co-design allowed for flexibility and adaptability. Taking time early on and a focus on shared values and understandings with lesbian, gay, bisexual, transgender, gender diverse, intersex, and queer networks was important for collective ownership of the co-design process. The integrated experience-based co-design approach recognized the varied and multiple characteristics and contributions of members of the research team and study participants.

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