Social care - people with learning disabilities and carers Mental and Behavioural Disorders Developmental disorder of scholastic skills, unspecified
Conditions
Interventions
Current intervention as of 17/08/2022:
1. Three rapid scoping reviews focusing on older people with learning disabilities with behaviours that challenge and older carers
2. A scoping exercise involv
Sponsors
Manchester Metropolitan University
Eligibility
Sex/Gender
All
Inclusion criteria
Inclusion criteria: Current inclusion criteria as of 17/08/2022: WP2 MAPPING AND SCOPING EXERCISE - one of the following: 1. NHSE regional lead for learning disabled and/or the lead for end of life care 2. Key staff from Sustainability and Transformation Partnerships 3. Commissioner of services 4. Key staff from service providers 5. Key staff from relevant voluntary organisations 6. Public or professional with an interest in services for older learning disabled people and support for older carers WP3 ETHNOGRAPHY 9 case study sites demonstrating exemplars in one of 4 models of provision (independent supported living, residential services, family-/home-based support and daytime activities and services, and Shared Lives). Per site: 1. 4-6 people with learning disabilities 2. 4-6 carers 3. 4-5 support workers 4. 1-2 commissioners, service managers, or other relevant staff WP4 1. People with learning disabilities (aged 40+) who live at home with an elderly parent who have some verbal ability and who are able to give informed consent 2. Parent carers with an adult child with learning disabilities (aged 40+) living in the family home 3. Siblings of people with learning disabilities (aged 40+) who live with elderly parents 4. Siblings (or close relatives) of people with learning disabilities who lived at home with at least 1 parent until the age of 35+, and whose home situation changed because either the parent(s) died or became too frail to care for them _____ Previous inclusion criteria: WP2 MAPPING AND SCOPING EXERCISE - one of the following: 1. NHSE regional lead for learning disabled and/or the lead for end of life care 2. Key staff from Sustainability and Transformation Partnerships 3. Commissioner of services 4. Key staff from service providers 5. Key staff from relevant voluntary organisations 6. Public or professional with an interest in services for older learning disabled people and support for older carers WP3 ETHNOGRAPHY 4 case study sites. In each: 1. 5-10 people with learning disabilities aged 40+ 2. 5-8 carers 3. 4-5 support workers 4. 1-2 relevant commissioners and service managers WP4 1. People with learning disabilities (aged 40+) who live at home with an elderly parent who have some verbal ability and who are able to give informed consent 2. Parent carers with an adult child with learning disabilities (aged 40+) living in the family home 3. Siblings of people with learning disabilities (aged 40+) who live with elderly parents 4. Siblings of people with learning disabilities (aged 40+) who had to leave the parental home following parental death within the past 3 years
Exclusion criteria
Exclusion criteria: Does not meet inclusion criteria
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| Qualitative methods will be used: 1. To develop an understanding of existing evidence about the health (physical, mental and social) needs, service interventions and resources for family carers and older people with learning disabilities with a focus on those with behaviours that challenge in transition to greater supported care, including end of life care for carers (WP1). 2. Identify exemplars of good practice in services and support interventions in the UK for older people with learning disabilities, and their family and professional carers, with behaviours that challenge towards end of life (WP2). 3. To explore how older people with learning disabilities with behaviours that challenge and their carers can be better supported in later life by researching the commissioning and delivery of exemplar supported living services using ethnographic case studies (WP3). 4. To co-produce decision aid tools to support future planning and end of life care discussions for carers and future planning for older people with learning disabilities and evaluate their initial use (WP4). | — |
Secondary
| Measure | Time frame |
|---|---|
| Qualitative methods will be used to co-produce actionable recommendations for commissioners and providers, resources and decision-aids for carers and people with learning disabilities with behaviours that challenge, and online training materials about care in later life for social workers and professional carers (WP5). | — |
Countries
England, United Kingdom
Outcome results
None listed