Ethnography of Hospital Care for Adults With Learning Disabilities

NCT06997250 | Not Yet Recruiting DMC

• 2 other identifiers: RHM MIS0083NIHR206167
• Study Type: observational
• Target: 96
• Locations: 0 countries
• Sites: N/A

Brief Summary

This study will:

1. 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. 2.Examine how care is organised and delivered for adults with learning disabilities during a hospital admission.
3. 3.Use the findings to co design guidance with people with learning disabilities, carers, and ward staff to improve care.
4. 4.recommendations to the NHS on adapting ward care;
5. 5.a masterclass on ward care for participating hospitals;
6. 6.a briefing to the NHS in England and the Care Quality Commission on improving how ward care is checked and managed; and
7. 7.guidance and a toolkit on making co design more inclusive, including for people with profound learning disabilities.

Conditions

Learning Disability, Adult

Keywords

Learning disabilities; Hospital care; Acute care; Ward care

Outcome Measures

Primary Outcomes (2)

• 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

  From enrolment in the study until end of admission (average admission is 6 days)

• 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

  From enrolment in the study until end of admission (average admission is 6 days)

Study Arms (2)

Adults with learning disabilities, their carers and staff recruited from Hospital A

Adults with a learning disability receiving inpatient care in the hospital site during the data collection period

Adults with learning disabilities their carers and staff recruited from Hospital B

Adults with a learning disability receiving inpatient care in the hospital site during the data collection period

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: No
• Age Groups: Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

Adults with learning disabilities who are inpatients in Hospital A or Hospital B during the data collection period.

You may qualify if:

• Adults with a learning disability (over the age of 18)
• Receiving inpatient care in the hospital site during the data collection period

You may not qualify if:

• 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
• Patients in intensive care units at the point of recruitment into the study

Sponsors & Collaborators

• University Hospital Southampton NHS Foundation Trust: lead
• University of Southampton: collaborator
• University of West London: collaborator
• National Institute for Health Research, United Kingdom: collaborator

Related Links

• Funding award page (NIHR)

MeSH Terms

Conditions

Learning Disabilities

Condition Hierarchy (Ancestors)

Communication Disorders; Neurobehavioral Manifestations; Neurologic Manifestations; Nervous System Diseases; Signs and Symptoms; Pathological Conditions, Signs and Symptoms; Neurodevelopmental Disorders; Mental Disorders

Study Officials

• Joanna Hope, PhD

  University of Southampton

  PRINCIPAL INVESTIGATOR

Central Study Contacts

Joanna L Hope, PhD

CONTACT

02380 595292; j.l.hope@soton.ac.uk

Study Design

• Study Type: observational
• Observational Model: OTHER
• Time Perspective: OTHER
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: April 25, 2025
• First Posted: May 30, 2025
• Study Start: June 1, 2025
• Primary Completion: September 30, 2025
• Study Completion: September 30, 2025
• Last Updated: May 30, 2025

Record last verified: 2025-05

Data Sharing

• IPD Sharing: Will not share