Designing a Library of Lived Experience for Mental Health (LoLEM): Protocol for integrating a realist synthesis and Experience Based Codesign approach

Introduction: People with lived expertise in managing mental health challenges can be an important source of knowledge and support for other people facing similar challenges, and for carers to learn how best to help. However, opportunities for sharing lived expertise are limited. Living libraries support people with lived expertise to be ‘living books’, sharing their experiences in dialogue with ‘readers’ who can ask questions. Living libraries have been piloted worldwide in health-related contexts but without a clear model of how they work or rigorous evaluation of their impacts. We aim to develop a programme theory about how a living library could be used to improve mental health outcomes, using this theory to codesign an implementation guide that can be evaluated across different contexts.Methods and analysis: We will use a novel integration of realist synthesis and experience-based codesign (EBCD) to produce a programme theory about how living libraries work and a theory and experience informed guide to establishing a library of lived experience for mental health (LoLEM). Two workstreams will run concurrently: (1) a realist synthesis of literature on living libraries, combined with stakeholder interviews, will produce several programme theories; theories will be developed collaboratively with an expert advisory group of stakeholders who have hosted or taken part in a living library and will form our initial analysis framework; a systematic search will identify literature about living libraries; data will be coded into our analysis framework, and we will use retroductive reasoning to explain living libraries’ impacts across multiple contexts. Individual stakeholder interviews will help refine and test theories; (2) data from workstream 1 will inform 10 EBCD workshops with people with experience of managing mental health difficulties and health professionals to produce a LoLEM implementation guide; data from this process will also inform the theory in workstream 1.Ethics and dissemination: Ethical approval was granted by Coventry and Warwick National Health Service Research Ethics Committee on 29 December 2021 (reference number 305975). The programme theory and implementation guide will be published as open access and shared widely through a knowledge exchange event, a study website, mental health provider and peer support networks, peer reviewed journals and a funders report.PROSPERO registration details CRD42022312789

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

ObjectiveLiving 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).DesignIntegrated realist synthesis and experience-based co-design.Setting Ten online workshops with participants based in the North of England.ParticipantsThirty-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.ResultsDatabase 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 (CMO1). 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.ConclusionsThe 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.RegistrationPROSPERO CRD42022312789Strengths and limitations of this study• This study used a novel, iterative, and creative approach to integrating theory development and intervention co-design.• A key strength of this approach was the involvement of people with lived experience expertise in mental health at every stage of co-design and theory development.• The programme theory and implementation guidance were informed by analysis of research on previous Living Libraries and detailed co-design workshops, which drew on broadprofessional and personal mental health experiences.• However, few evidence sources identified by systematic searches describe Living Libraries focused specifically on mental health

Exploring the Suitability of Transformer Models to Analyse Mental Health Peer Support Forum Data for a Realist Evaluation

Mental health peer support forums have become widely used in recent years. The emerging mental health crisis and the COVID-19 pandemic have meant that finding a place online for support and advice when dealing with mental health issues is more critical than ever. The need to examine, understand and find ways to improve the support provided by mental health forums is vital in the current climate. As part of this, we present our initial explorations in using modern transformer models to detect four key concepts (connectedness, lived experience, empathy and gratitude), which we believe are essential to understanding how people use mental health forums and will serve as a basis for testing more expansive realise theories about mental health forums in the future. As part of this work, we also replicate previously published results on empathy utilising an existing annotated dataset and test the other concepts on our manually annotated mental health forum posts dataset. These results serve as a basis for future research examining peer support forums

Working with the police service and homeless services in North West England to reduce alcohol harms: A feasibility study of a tailored Blue Light approach

IntroductionDeaths caused by alcohol are increasing in England and 80 % of people with alcohol use disorders (AUDs) are not in treatment. The Blue Light approach (Alcohol Change UK) is an initiative to support people with AUDs who are not in treatment. This study aimed to tailor the Blue Light approach (combined with alcohol identification and alcohol brief interventions [ABI] training) for police officers and homeless service staff in North West England, and to qualitatively evaluate the feasibility and acceptability of the training.MethodsThe Blue Light approach was tailored using co-production activities, based on Transdisciplinary Action Research. Full-day and half-day training sessions were delivered to the police (full-day N = 14, half-day N = 54) and homeless service staff (full-day N = 11, half-day N = 32), in local police stations and online (four half-day sessions). Semi-structured interviews (N = 23) were conducted to evaluate implementation and integration, analysing the qualitative data in line with Normalisation Process Theory.ResultsFour themes were identified, each with two to three sub-themes, reflecting: (i) the importance of training for working practice, (ii) implementation of the interventions, (iii) changes to relationships within and between organizations, and (iv) recommendations for further changes to the training. Differences in findings across the organizations (police versus homeless services) and by training type attended (full-day versus half-day, in-person versus online) are presented.ConclusionsThere is evidence to suggest that the training has provided worthwhile knowledge and intervention techniques that can become embedded into working practices. Nevertheless, structural barriers were apparent, primarily within the police service, with clear disparities between recognising the value of the training and what is achievable in practice, given the competing demands

Working with the police service and homeless services in North West England to reduce alcohol harms : A feasibility study of a tailored Blue Light approach

Deaths caused by alcohol are increasing in England and 80 % of people with alcohol use disorders (AUDs) are not in treatment. The Blue Light approach (Alcohol Change UK) is an initiative to support people with AUDs who are not in treatment. This study aimed to tailor the Blue Light approach (combined with alcohol identification and alcohol brief interventions [ABI] training) for police officers and homeless service staff in North West England, and to qualitatively evaluate the feasibility and acceptability of the training. The Blue Light approach was tailored using co-production activities, based on Transdisciplinary Action Research. Full-day and half-day training sessions were delivered to the police (full-day N = 14, half-day N = 54) and homeless service staff (full-day N = 11, half-day N = 32), in local police stations and online (four half-day sessions). Semi-structured interviews (N = 23) were conducted to evaluate implementation and integration, analysing the qualitative data in line with Normalisation Process Theory. Four themes were identified, each with two to three sub-themes, reflecting: (i) the importance of training for working practice, (ii) implementation of the interventions, (iii) changes to relationships within and between organizations, and (iv) recommendations for further changes to the training. Differences in findings across the organizations (police versus homeless services) and by training type attended (full-day versus half-day, in-person versus online) are presented. There is evidence to suggest that the training has provided worthwhile knowledge and intervention techniques that can become embedded into working practices. Nevertheless, structural barriers were apparent, primarily within the police service, with clear disparities between recognising the value of the training and what is achievable in practice, given the competing demands. [Abstract copyright: Copyright © 2023 The Authors. Published by Elsevier Inc. All rights reserved.

A qualitative exploration of the contribution of blue space to wellbeing in the lives of people with severe mental illness

1. The majority of research into the mental health benefits of blue space (outdoor places where water is a central feature) has focussed on the associations between neighbourhood exposure to these spaces and population-level incidence of unipolar depression or anxiety disorder. There has been little exploration of the therapeutic use of blue space by those navigating bipolar, schizophrenia or other psychotic conditions. Knowledge arising from such an exploration could assist in the design and optimisation of nature-based care for people with these conditions, as well as with self-management. 2. We conducted semi-structured online and telephone interviews with 19 adults who self-reported experience of these conditions. Interviews were conducted in the U.K. from August to December 2021. 3. We describe four of the key interpretive themes identified via an in-depth inductive thematic analysis of the interview transcripts to highlight how participants sought out moments of affective sanctuary through their blue encounters. Blue spaces were described as having the potential to reset the mind, emotions and body. This was in part due to their socially undemanding nature, and ability to provide respite from a socially stressful world. 4. Participants described developing a blue identity, whereby a sense of attachment to and shared history with these places was articulated as well as incorporating blue spaces into self- and emotion-regulation practices. Finally, participants described experiences of and recommendations for a therapeutic blue intervention. The role of biodiversity in contributing to the benefits of blue spaces was implied primarily in terms of perceived soundscapes, but also through visual observations. 5. Synthesis and applications: blue care for people with bipolar, schizophrenia or other psychotic conditions should consider the need that some individuals have for solitude and proximity to their home when they visit blue spaces, as well as individual differences in the features of blue space interactions that provide the greatest benefit

Understanding the impacts of online mental health peer support forums:A realist synthesis

BackgroundOnline forums are widely used for mental health peer support. However, evidence of their safety and effectiveness is mixed. Further research focused on articulating the contexts in which positive and negative impacts emerge from forum use is required to inform innovations in implementation.ObjectiveTo develop a realist programme theory to explain the impacts of online mental health peer support forums on users.MethodsRealist synthesis of literature published 2019-2023 and 18 stakeholder interviews with forum staff. ResultsSynthesis of 102 evidence sources and 18 interviews produced an overarching programme theory comprising 22 context-mechanism-outcome configurations. Findings indicate that users’ perceptions of psychological safety and the personal relevance of forum content are foundational to ongoing engagement. Safe and active forums that provide convenient access to information and advice can lead to improvements in mental health self-efficacy. Within the context of welcoming and non-judgmental communities, users may benefit from the opportunity to explore personal difficulties with peers, experience reduced isolation and normalization of mental health experiences, and engage in mutual encouragement. The programme theory highlights the vital role of moderators in creating facilitative online spaces, stimulating community engagement, and limiting access to distressing content. A key challenge for organizations that host mental health forums lies in balancing forum openness and anonymity with the need to enforce rules, such as restrictions on what users can discuss, in order to promote community safety.ConclusionThis is the first realist synthesis of online mental health peer support forums. The novel programme theory highlights how successful implementation depends on establishing protocols for enhancing safety and strategies for maintaining user engagement to promote forum sustainability.<br/

Understanding the Impacts of Online Mental Health Peer Support Forums : Realist Synthesis

BACKGROUND: Online forums are widely used for mental health peer support. However, evidence of their safety and effectiveness is mixed. Further research focused on articulating the contexts in which positive and negative impacts emerge from forum use is required to inform innovations in implementation. OBJECTIVE: This study aimed to develop a realist program theory to explain the impacts of online mental health peer support forums on users. METHODS: We conducted a realist synthesis of literature published between 2019 and 2023 and 18 stakeholder interviews with forum staff. RESULTS: Synthesis of 102 evidence sources and 18 interviews produced an overarching program theory comprising 22 context-mechanism-outcome configurations. Findings indicate that users' perceptions of psychological safety and the personal relevance of forum content are foundational to ongoing engagement. Safe and active forums that provide convenient access to information and advice can lead to improvements in mental health self-efficacy. Within the context of welcoming and nonjudgmental communities, users may benefit from the opportunity to explore personal difficulties with peers, experience reduced isolation and normalization of mental health experiences, and engage in mutual encouragement. The program theory highlights the vital role of moderators in creating facilitative online spaces, stimulating community engagement, and limiting access to distressing content. A key challenge for organizations that host mental health forums lies in balancing forum openness and anonymity with the need to enforce rules, such as restrictions on what users can discuss, to promote community safety. CONCLUSIONS: This is the first realist synthesis of online mental health peer support forums. The novel program theory highlights how successful implementation depends on establishing protocols for enhancing safety and strategies for maintaining user engagement to promote forum sustainability. TRIAL REGISTRATION: PROSPERO CRD42022352528; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=352528