Recovery Colleges for post-diagnostic dementia support: The DiSCOVERY realist evaluation synopsis.

内容摘要

Recovery Colleges offer peer-led, coproduced psychoeducational courses to support people to have meaningful lives. There is limited knowledge of their use in the context of dementia. This study used a realist programme theory approach to develop an in-depth understanding of how United Kingdom Recovery College dementia courses lead to outcomes for people with dementia, families and staff. To build knowledge through mapping Recovery College dementia courses across the United Kingdom; conduct a realist review of evidence; identify key components of effective Recovery College dementia courses within a realist programme theory; identify outcome measures for evaluating Recovery College dementia courses; understand diverse ethnic and cultural needs of people with dementia in accessing Recovery College dementia courses; and coproduce resources for implementing Recovery College dementia courses. A mixed-methods design to examine what works for who and in what circumstances, coproduced with people with lived experience of dementia and staff from National Health Service Recovery Colleges and memory services. This involved: a United Kingdom-based staff survey of memory services and Recovery College dementia course provision, delivery and attendance; a realist review combining literature and stakeholder knowledge to build an initial programme theory; a realist evaluation using ethnographic observation within five case studies, realist interviews and documentary evidence, with analysis involving stakeholders using realist logic to explore causal processes operating in different contexts and intended and unintended outcomes (i.e. Contexts, Mechanisms and Outcomes); a scoping review of potential outcome measures for evaluation; and coproduced resources using three rounds of stakeholder workshops. Set in United Kingdom National Health Service mental health organisations, staff recruitment from Recovery Colleges and memory services and people with dementia/families from Recovery Colleges. Twelve (from 51) Recovery Colleges offered dementia-specific courses, and 210 memory service staff completed the survey. Thirty-five documents and discussions with 19 stakeholders (7 people with dementia, 2 family carers, 10 staff) informed the initial programme theory. A trusted person endorsing a course encouraged attendance. Shared coproduction values underpinned the success of setting up and running courses. Through co-facilitation of recovery-focused content by peer-tutors with well-developed facilitation skills, attendees appeared to mediate self-stigma, manage emotional uncertainty and make meaningful social connections in ways which engendered hope for the future. Course evaluation was challenging as people often left without completing a written survey. One attempt at pre and post course well-being measures failed to capture follow-up date. Four case sites were recruited, limiting diversity in course delivery methods and participant backgrounds. Numbers of people with dementia attending courses was lower than expected, raising questions about awareness and accessibility. Course evaluation was limited to standard feedback sheets. Sufficient data on coproduction processes and staff experiences were lacking, thus restricting refined theories about coproduction and its impact on practice. Recovery-focused post-diagnostic courses can enable people with dementia to consider a hopeful future. Resources available may stimulate inclusivity and accessibility. The authenticity of peer tutors with dementia resonated with course attendees, and lived experience insights from people who were living positive lives with dementia is a key strength of this form of post-diagnostic support. Longer-term outcomes (e.g. hopefulness) for people with dementia attending recovery-focused courses is possible, but further validation of identified measures to address responsiveness, interpretability, inclusion of personal-recovery domains and cultural sensitivity for diverse populations is a pre-requisite. This synopsis presents independent research funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme as award number NIHR131676. We explored how people with dementia and their family supporters worked with mental health staff to develop and deliver short courses on living positively after a diagnosis of dementia. These courses are usually run by National Health Service mental health providers through a group of courses called the Recovery College. We focused on finding out what developing, delivering and attending a course was like for people with dementia, family supporters and healthcare staff. We asked how people found out about courses and whether courses are interesting and relevant for people following a dementia diagnosis. This helped us find out what worked for whom, when and why. We joined five different courses in England to see what happened and interviewed people with dementia, their family supporters and staff. We discussed this information with people involved with the study and courses. Their suggestions and experiences led to agreed explanations about what works in real life. We used this updated knowledge to work with our Partners in Research group, which consisted of people with dementia and family carers, as well as staff to develop guidance and resources for others to set up this type of course in a Recovery College. At the moment, there are not many Recovery Colleges providing courses for people with dementia. However, postdiagnostic support lead by people with experience of the diagnosis can have positive outcomes for tutors and attendees with dementia. Many reported that they felt more confident in their ability to live positively with dementia and were more hopeful of living a meaningful life despite their diagnosis. These findings show people with dementia can benefit from educational courses developed by people with lived experience that focuses on developing hope, identity, purpose and confidence after their diagnosis. Dementia courses in Recovery Colleges can help some people feel more in control, stay socially connected and look towards a positive future. This approach can encourage people to take an active role in their own support and that of others.