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.
Adults with a learning disability (over the age of 18)
Receiving inpatient care in the hospital site during the data collection period
Children and young people with learning disabilities (under 18 years of age).
People living with other kinds of cognitive impairment (not learning disability) e.g. head injury
People not receiving inpatient care in the hospital sites during the recruitment period
Patients on the end-of-life care pathway at the point of recruitment into the study
Adults with learning disabilities who are inpatients in Hospital A or Hospital B during the data collection period.
Other
Other
Not listed
Experiences of Hospital Care from the Perspectives of People with Learning Disabilities and their Carers
Care experiences from the perspectives of adults with learning disabilities and their family carers during a hospital admission, including people with complex needs and profound learning disabilities
How Ward Care is Organised and Delivered for Adults with Learning Disabilitie
How care is organised and delivered for adults with learning disabilities during a hospital admission including how ward teams understand and respond to their needs
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University Hospital Southampton NHS Foundation Trust
Lead sponsor
University of Southampton
Collaborator
University of West London
Collaborator
National Institute for Health Research, United Kingdom
Collaborator
This trial is not recruiting at the moment. You can still explore other options:
