Exploring how Registered Nurses for Learning Disability support end-of-life care for people with learning disabilities in Wales

The University of South Wales have been awarded funding to carry out research which will explore the unique contribution of Registered Learning Disability Nurses to end-of-life care for people with learning disabilities in Wales. 

Exploring How Registered Nurse (Learning Disabilities) (RNLDs) Support End‑of‑Life Care for People with Learning Disabilities in Wales 

RNLDs have specialist skills in communication, interpreting distress, advocacy and supporting complex needs. Their contribution across the lifespan is considerable yet despite this contribution being recognised across the lifespan, there is less knowledge about their role in supporting people with learning disabilities at the end of their lives. As a result, many people with learning disabilities may not receive the tailored support they need at the most critical stage of life.

This project aims to address this gap by examining the unique contribution RNLDs make to end-of-life care. It will be a co-produced study, working with people with learning disabilities, RNLDs and other nurses who have worked with RNLDs to generate clear evidence about what RNLDs do; to support end-of-life care, it will explore interventions that have taken place, the impact of these and the outcomes that have been achieved.

An easy read guide is available here.

Objectives 

• Identify the skills, roles, and interventions used by RNLDs in end-of-life care across a range of settings
• Examine how RNLDs work with other professionals and families to deliver end-of-life care
• Analyse barriers and enablers to the RNLD contribution during end-of-life care
• Develop practical, evidence-based recommendations for practice, education and service improvement

Data for the study will be derived from interviews with nurses who have experience in supporting a person with learning disabilities at the end of their life and from flexible and remote focus groups of nurses with an interest in improving end-of-life care for people with learning disabilities.

Outputs

The study hopes to generate a range of high‑quality, practice‑focused outputs designed to influence policy, education and clinical care across Wales, including:

• A comprehensive, integrated report which will clearly articulate the distinctive contributions of RNLDs in end-of-life care. It will evidence models of integrated practice across learning disability nursing, palliative care and district nursing. It will include a detailed thematic analysis of RNLD skills, roles, interventions and outcomes. The report will identify training and workforce development needs in addition to analysis of gaps and opportunities for alignment within relevant Welsh Government policy
• A set of co‑produced recommendations for improving end‑of‑life care pathways, service coordination and the integration of RNLD expertise across sectors
• Practice‑oriented guidance and tools (e.g., accessible summaries, decision‑support prompts for deterioration recognition, examples of RNLD interventions that improve care)
• Conference presentations and journal publications (post 12 month funding) to disseminate findings to national and international audiences
• Easy Read and accessible outputs, co‑produced with TRAC and Cardiff People First, ensuring the work is meaningful and usable for people with learning disabilities and families
• Policy and commissioning summary targeted at Welsh Government, Health Boards and palliative care leads. 

Together, these outputs will strengthen the evidence base for RNLD practice, guide workforce development, inform Welsh policy, support commissioners and clinical leaders, provide accessible information for people with learning disabilities, and generate practical tools to improve end‑of‑life care across nursing disciplines in Wales. 

The project has commenced and is due to complete in May 2027.