Clinical Research Directory

Ethnography of Hospital Care for Adults With Learning Disabilities

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 adults with learning disabilities during a hospital admission. 3. Use the findings to co design guidance with people with learning disabilities, carers, and ward staff to improve care. This study will follow the care of 8 adults with learning disabilities (including people with profound learning disabilities) during a hospital admission, in two hospitals in England. The researcher will use tailored communication to support people in sharing their experiences, including Talking Mats, Makaton and photos. The researcher will spend time with people with profound learning disabilities, learning how they communicate and carefully interpreting their non-verbal communications with their carers' support. The researcher will also talk to people's carers. The researcher will observe people's care, meetings about their care, talk to staff about their care, and read care notes (if the person agrees). The researcher will write this down and analyse it to learn how care could be improved. The research team will work with people with learning disabilities, carers, and hospital staff to co design resources to improve ward care for people with learning disabilities. This will include: 1. recommendations to the NHS on adapting ward care; 2. a masterclass on ward care for participating hospitals; 3. a briefing to the NHS in England and the Care Quality Commission on improving how ward care is checked and managed; and 4. guidance and a toolkit on making co design more inclusive, including for people with profound learning disabilities. The research team includes a person with a learning disability and a family carer, who will steer this project. The research team are working with people with learning disabilities and carers throughout our study to make sure it reflects their needs.