Care4Me v. 1.0
Research type
Research Study
Full title
Improving the care people with learning disabilities receive in hospital: an ethnographic study examining the experiences of people with learning disabilities and the organisation and delivery of their care
IRAS ID
331917
Contact name
Joanna L Hope
Contact email
Sponsor organisation
University Hospital Southampton NHS Foundation Trust
Duration of Study in the UK
0 years, 11 months, 30 days
Research summary
Adults with learning disabilities experience poorer hospital care. This results in avoidable deaths, and issues like infections and blood clots. Family carers often provide 24-7 care, but their concerns have been ignored, leading to avoidable deaths. People with learning disabilities can be ignored with staff speaking to carers instead. Despite pockets of good practice, ward care can be unpredictable and unsafe, but we do not know why. This study will: 1. explore care experiences during a hospital admission from the perspectives of adults with learning disabilities (including people with profound learning disabilities) and their carers. 2. Examine how care is organised and delivered for patients with learning disabilities 3. Use the findings to co-design guidance to improve hospital care. Our study will follow the care of 8 adults with learning disabilities (including people with profound learning disabilities) during an admission in one of two hospitals in England. We will use tailored communication to support people in sharing their experiences, including Talking Mats, stories and photos. We will spend time with people with profound learning disabilities, learning how they communicate and carefully interpreting their non-verbal communications with their carers’ support. We will also talk to people’s carers. We will observe people’s care, meetings about their care, talk to staff, and (if agreed) read care notes. We will write this down and analyse it to learn how care could be improved. With people with learning disabilities, carers, and hospital staff we will co-design: recommendations to NHS England and the Care Quality Commission on adapting ward care, training, and a toolkit on making co-design more inclusive, including for people with profound learning disabilities. Our project team includes a person with a learning disability and a family carer and we are consulting study advisors with learning disabilities and carers on each key decision.
REC name
West Midlands - Coventry & Warwickshire Research Ethics Committee
REC reference
25/WM/0034
Date of REC Opinion
2 Apr 2025
REC opinion
Further Information Favourable Opinion