Designing a Library of Lived Experience for Mental Health: integrated realist synthesis and experience-based co-design study in UK mental health services
Mike Slade,
Jo Rycroft-Malone,
Steven H Jones,
Fiona Lobban,
Sarah Powell,
Hameed Khan,
Paul Marshall,
John Barbrook,
Grace Collins,
Sheena Foster,
Zoe Glossop,
Clare Inkster,
Paul Jebb,
Rose Johnston,
Christopher Lodge,
Karen Machin,
Erin Michalak,
Lesley Whittaker,
Samantha Russell
Affiliations
Mike Slade
Faculty of Medicine and Health Sciences, Nord University, Namsos, Norway
Jo Rycroft-Malone
Faculty of Health and Medicine, Lancaster University, Lancaster, UK
Steven H Jones
Spectrum Centre for Mental Health Research, Division of Health Research, Lancaster University, Lancaster, UK
Fiona Lobban
Spectrum Centre for Mental Health Research, Division of Health Research, Lancaster University, Lancaster, UK
Sarah Powell
Lancaster Medical School, Lancaster University, Lancaster, UK
Hameed Khan
Spectrum Centre for Mental Health Research, Division of Health Research, Lancaster University, Lancaster, UK
Paul Marshall
Spectrum Centre for Mental Health Research, Division of Health Research, Lancaster University, Lancaster, UK
John Barbrook
Lancaster University Library, Lancaster University, Lancaster, UK
Grace Collins
Freelance participatory artist, Lancaster, UK
Sheena Foster
Spectrum Centre for Mental Health Research, Division of Health Research, Lancaster University, Lancaster, UK
Zoe Glossop
Spectrum Centre for Mental Health Research, Division of Health Research, Lancaster University, Lancaster, UK
Clare Inkster
Health Education England North West, Manchester, UK
Paul Jebb
Patient Experience, Engagement & Safeguarding, Lancashire and South Cumbria NHS Foundation Trust, Preston, Lancashire, UK
Rose Johnston
Spectrum Centre for Mental Health Research, Division of Health Research, Lancaster University, Lancaster, UK
Christopher Lodge
Spectrum Centre for Mental Health Research, Division of Health Research, Lancaster University, Lancaster, UK
Karen Machin
Independent survivor researcher, Lancaster, UK
Erin Michalak
Department of Psychiatry, The University of British Columbia, Vancouver, British Columbia, Canada
Lesley Whittaker
Patient Experience, Engagement & Safeguarding, Lancashire and South Cumbria NHS Foundation Trust, Preston, Lancashire, UK
Samantha Russell
Spectrum Centre for Mental Health Research, Division of Health Research, Lancaster University, Lancaster, UK
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.
