Growing older, planning ahead: people with learning disabilities and carers

Not Applicable

Completed

• Conditions: Social care - people with learning disabilities and carers; Mental and Behavioural Disorders; Developmental disorder of scholastic skills, unspecified

• Registration Number: ISRCTN74264887
• Lead Sponsor: Manchester Metropolitan University

Brief Summary

2024 Results article in https://pubmed.ncbi.nlm.nih.gov/38940476/ (added 01/07/2024)

Detailed Description

Not available

Study Timeline

• Study Start: 2020-07-28
• Study Completion: 2023-02-28
• Last Update Posted: 15 July 2024

Recruitment & Eligibility

• Status: Completed
• Sex: All
• Target Recruitment: 256

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

Does not meet inclusion criteria

Study & Design

• Study Type: Observational
• Study Design: Not specified