Post-Diagnostic Dementia Support within the ReCOVERY College Model: A Realist Evaluation (DiSCOVERY)
Study Code / Acronym
DiSCOVERYAward Number
NIHR131676Programme
Health and Social Care Delivery ResearchStatus / Stage
ActiveDates
1 January 2022 -31 December 2024
Duration (calculated)
02 years 11 monthsFunder(s)
NIHRFunding Amount
£684,043.68Funder/Grant study page
NIHRContracted Centre
Norfolk and Suffolk NHS Foundation TrustContracted Centre Webpage
Principal Investigator
Professor Christopher FoxPI Contact
Chris.Fox@uea.ac.ukPI ORCID
0000-0001-9480-5704WHO Catergories
Tools and methodologies for interventionsDisease Type
Dementia (Unspecified)CPEC Review Info
| Reference ID | 15 |
|---|---|
| Researcher | Reside Team |
| Published | 12/06/2023 |
Data
| Study Code / Acronym | DiSCOVERY |
|---|---|
| Award Number | NIHR131676 |
| Status / Stage | Active |
| Start Date | 20220101 |
| End Date | 20241231 |
| Duration (calculated) | 02 years 11 months |
| Funder/Grant study page | NIHR |
| Contracted Centre | Norfolk and Suffolk NHS Foundation Trust |
| Contracted Centre Webpage | |
| Funding Amount | £684,043.68 |
Abstract
Background Receiving a diagnosis of dementia is life-changing with associated stigma bringing negative messages and social-psychological isolation. People need support but there is significant variability in availability and quality from the NHS following diagnosis. NHS mental health trusts have adopted Recovery Colleges as a possible solution. They offer educational courses that are co-produced by people with a range of mental health difficulties (‘peer tutors’) alongside staff. Dementia is a progressive illness and personal recovery refers to living well and ‘recovering a life after diagnosis’. Many NHS trusts are offering Recovery College courses with and for people with dementia, their families/supporters and mental health staff. Access to co-produced information and peer support in Recovery Colleges may reduce psychological burden and support in adapting to a dementia diagnosis. Recovery College dementia courses are already being delivered but there is an evidence gap in terms of how they are delivered. Research question What factors support co-production and delivery of Recovery College dementia courses: what works, for whom, how and in what circumstances? Aims/objectives We aim to develop a realist programme theory of how Recovery College dementia courses as a way of supporting people post-diagnosis, leads to intended and unintended outcomes for people living with dementia/their supporters. Our objectives are to 1) map UK provision of Recovery College dementia courses, 2) conduct a realist review and evaluation with input from key stakeholders to characterise a recovery-focused approach to providing beneficial post-diagnostic support in dementia, 3) identify outcome domains and validated measures which could be used to evaluate Recovery College dementia courses; and 4) provide guidance for co-producing, implementing and delivering recovery-focused, person-centred Recovery College dementia courses. Methods Recovery Colleges are a complex intervention with context-sensitive outcomes. To make sense of these we will use two theory-driven approaches: a UK survey and rapid realist review to develop an initial programme theory, then a realist evaluation of five existing Recovery College dementia courses using multiple data collection methods: focused ethnography, interviewing and documentary review. The resulting programme theory of the effective and beneficial components of Recovery Colleges for dementia, impact of contextual factors and underlying mechanisms of change will be used to co-produce guidance and resources to support co-production and co-delivery of recovery-focused post-diagnostic support. Delivery timelines The project will be delivered over 36 months: initial programme theory (months 0-6); realist evaluation (months 7-26); select outcome measures (months 20-26); co-produce key resources (months 27-36). Impact/dissemination Findings used to improve access to co-produced and peer-led post diagnostic dementia support within existing NHS structures, and up-skill staff in person-centred post-diagnostic support for people with dementia through learning from lived experience. We plan to provide evidence-based standards for best practice in NHS memory services. We will work throughout with the Dementia Engagement and Empowerment Project, sharing findings and resources through local and national groups, including NHS memory services, Recovery Colleges, other groups supporting people with dementia and the public.
Aims
Project objectives are to 1) map UK provision of Recovery College dementia courses, 2) conduct a realist review and evaluation with input from key stakeholders to characterise a recovery-focused approach to providing beneficial post-diagnostic support in dementia, 3) identify outcome domains and validated measures which could be used to evaluate Recovery College dementia courses; and 4) provide guidance for co-producing, implementing and delivering recovery-focused, person-centred Recovery College dementia courses. Methods Recovery Colleges are a complex intervention with context-sensitive outcomes. To make sense of these we will use two theory-driven approaches: a UK survey and rapid realist review to develop an initial programme theory, then a realist evaluation of five existing Recovery College dementia courses using multiple data collection methods: focused ethnography, interviewing and documentary review. The resulting programme theory of the effective and beneficial components of Recovery Colleges for dementia, impact of contextual factors and underlying mechanisms of change will be used to co-produce guidance and resources to support co-production and co-delivery of recovery-focused post-diagnostic support.