Learning Disability Week | USW secures RCN funding for end-of-life care research

Researchers at the University of South Wales (USW) have secured funding from the RCN Foundation for a new study exploring end-of-life care for people with learning disabilities in Wales.

The study is a collaboration between USW and Cardiff People First. It comes in response to growing evidence that people with learning disabilities continue to experience significant health inequalities in the UK, including poorer experiences at the end of life.

Research has consistently shown that people with learning disabilities are more likely to experience avoidable and premature deaths, delayed recognition of deterioration, barriers to accessing specialist end-of-life care services, and difficulties having their symptoms and distress recognised and understood.

Despite the specialist skills Learning Disability Nurses bring to communication, advocacy, recognising distress, and coordinating care, there is very little research examining their contribution to end-of-life care. This has resulted in a gap in understanding how these nurses support individuals, families, and wider healthcare teams during critical times.

The research aims to address that gap by exploring the unique role of Learning Disability Nurses across a range of care settings in Wales. Through interviews and focus groups, the study will generate recommendations at improve practice and coordinate services.

Dr Stacey Rees, Course Leader for Learning Disability Nursing, said: “People with learning disabilities continue to experience considerable inequalities, and there is still limited understanding of the specialist contribution Learning Disability Nurses make in supporting people and their families.

“This research is important because it will help build evidence around learning disability nursing and identify how nursing practice can help reduce inequalities, improve communication, and ensure people with learning disabilities receive compassionate end-of-life care.

“A major strength of the study is working in partnership with Cardiff People First and USW’s Teaching and Research Advisory Committee. This means that lived experience will be central throughout the research, helping to ensure the findings are meaningful, relevant, and capable of influencing practice, education, and policy across Wales.”

Deepa Korea MBE, Director of the RCN Foundation said: “We are delighted to have awarded this funding to the University of South Wales. Evidence consistently shows that people with a learning disability experience significant health inequality in the UK, including poorer experiences at the end of life. This project is part of our wider Learning Disability Grants Programme: ‘Inclusive Health – enhancing the lives of individuals with learning disabilities’ and represents our firm commitment to supporting and strengthening learning disability nursing and, in so doing, improving the quality of life and health outcomes for people with a learning disability.”