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

This Tier 3 exploratory study will provide a detailed examination of the experiences of adults with learning disabilities and the organisation and delivery of their care during a hospital admission.

Background Hospital care for people with learning disabilities is a critical patient safety issue, with higher levels of poor care than in the general population that have led to avoidable deaths during hospital admissions.

Despite the legal requirement for reasonable adjustments to hospital care for this group, the quality of ward care is highly variable and unsafe, with ward staff often relying upon small teams of specialist nurses or family carers to prop up services, withpeople with learning disabilities often excluded from decisions about their care.

There is a paucity of evidence about why this pattern of inequalities persists.

To date, no detailed research has examined the hospital care of adults with learning disabilities, with research routinely excluding people with profound learning disabilities.

In response, the objectives: Understand care experiences from the perspectives of adults with learning disabilities and family carers during a hospital admission, including people with complex needs and profound learning disabilities.

Examine 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.

Use the findings to co-design guidance with people with learning disabilities, carers and ward staff to deliver initial strategies to improve support for people with learning disabilities at the ward level during hospital admissions.

Methods This 18-month exploratory study will use ethnography, following 8 embedded case studies following people with learning disabilities during hospital admission.

We will carry out the research in two hospitals using ethnographic methods: observation, interviews and document analysis.

We will use a toolbox of accessible interview supports and spend time with people with profound and multiple learning disabilities during a hospital admission to learn about, include and interpret their non-verbal communications with the support of their carers.

This Tier 3 project will deliver: Recommendations for the organisation and delivery of appropriately adapted ward care for people with learning disabilities A masterclass for ward staff focusing on the needs of people with profound learning disabilities during a hospital admission Co-produced guidance in collaboration with people with learning disabilities and their carers on inclusion in healthcare improvement research, which we will share with the research community and UKRI funding bodies Accessible co-design methods and a methods toolkit that supports the inclusion of people with a range of needs, including people who communicate non-verbally.

A briefing to NHS England and the Care Quality Commission to improve the monitoring and oversight of care of people with learning disabilities in hospital People with learning disabilities and their carers are partners who were involved in the development of this study and this will continue through co-applicant roles, project management meetings, group co-design of project materials, data coding, co-design of outputs, and presenting at an academic conference.