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
试验速览
- 阶段
- 不适用
- 状态
- 尚未招募
- 入组人数
- 96
- 主要终点
- Experiences of Hospital Care from the Perspectives of People with Learning Disabilities and their Carers
研究概览
简要总结
This study will:
- explore care experiences during a hospital admission from the perspectives of adults with learning disabilities (including people with profound learning disabilities) and their carers.
- Examine how care is organised and delivered for adults with learning disabilities during a hospital admission.
- 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:
- recommendations to the NHS on adapting ward care;
- a masterclass on ward care for participating hospitals;
- a briefing to the NHS in England and the Care Quality Commission on improving how ward care is checked and managed; and
- 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.
详细描述
This exploratory ethnographic study will examine the experiences of adults with learning disabilities and the organisation and delivery of their care during a hospital admission.
Objectives
- Understand care experiences from the perspectives of adults with learning disabilities and family carers during a hospital admission, including adults 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 adults with learning disabilities, carers and ward staff to deliver initial strategies to improve support for adults with learning disabilities at the ward level during hospital admissions.
This project will use ethnography (with embedded case studies, observation, interviews, document analysis) to understand how care is experienced by adults with learning disabilities and how it is organised and delivered by ward teams during a hospital admission. Advisory groups of people with learning disabilities and carers of people with learning disabilities will also be involved in the analysis and interpretation of data.
The researcher will recruit 8 case studies of adults with learning disabilities (4 per hospital) who are admitted within two large general hospitals in England over a four-month period and their carers and hospital staff supporting and caring for them.
研究设计
- 研究类型
- Observational
- 观察模型
- Other
- 时间视角
- Other
入排标准
- 年龄范围
- 18 Years 至 —（Adult, Older Adult）
- 性别
- All
- 接受健康志愿者
- 否
入选标准
- •Adults with a learning disability (over the age of 18)
- •Receiving inpatient care in the hospital site during the data collection period
排除标准
- •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
结局指标
主要结局
Experiences of Hospital Care from the Perspectives of People with Learning Disabilities and their Carers
时间窗: From enrolment in the study until end of admission (average admission is 6 days)
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
时间窗: From enrolment in the study until end of admission (average admission is 6 days)
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
次要结局
未报告次要终点