Designing a Library of Lived Experience for Mental Health : integrated realist synthesis and experience-based co-design study in UK mental health services

Marshall, Paul and Barbrook, John and Collins, Grace and Foster, Sheena and Glossop, Zoe and Inkster, Clare and Jebb, Paul and Johnston, Rose and Jones, Steven H and Khan, Hameed and Lodge, Christopher and Machin, Karen and Michalak, Erin and Powell, Sarah and Russell, Samantha and Rycroft-Malone, Jo and Slade, Mike and Whittaker, Lesley and Lobban, Fiona (2024) Designing a Library of Lived Experience for Mental Health : integrated realist synthesis and experience-based co-design study in UK mental health services. BMJ Open, 14 (1): e081188. ISSN 2044-6055

Abstract

OBJECTIVE: Living Library events involve people being trained as living 'Books', who then discuss aspects of their personal experiences in direct conversation with attendees, referred to as 'Readers'. This study sought to generate a realist programme theory and a theory-informed implementation guide for a Library of Lived Experience for Mental Health (LoLEM). DESIGN: Integrated realist synthesis and experience-based co-design. SETTING: Ten online workshops with participants based in the North of England. PARTICIPANTS: Thirty-one participants with a combination of personal experience of using mental health services, caring for someone with mental health difficulties and/or working in mental health support roles. RESULTS: Database searches identified 30 published and grey literature evidence sources which were integrated with data from 10 online co-design workshops conducted over 12 months. The analysis generated a programme theory comprising five context-mechanism-outcome (CMO) configurations. Findings highlight how establishing psychological safety is foundational to productive Living Library events (CMO 1). For Readers, direct conversations humanise others' experiences (CMO 2) and provide the opportunity to flexibly explore new ways of living (CMO 3). Through participation in a Living Library, Books may experience personal empowerment (CMO 4), while the process of self-authoring and co-editing their story (CMO 5) can contribute to personal development. This programme theory informed the co-design of an implementation guide highlighting the importance of tailoring event design and participant support to the contexts in which LoLEM events are held. CONCLUSIONS: The LoLEM has appeal across stakeholder groups and can be applied flexibly in a range of mental health-related settings. Implementation and evaluation are required to better understand the positive and negative impacts on Books and Readers. TRIAL REGISTRATION NUMBER: PROSPERO CRD42022312789.