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Research project: Measuring and evaluating end-of-life care in services for adults with learning disabilities in the UK

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This 30 month study aims to understand the end of life care phase of adults with learning disabilities living in LD residential settings. Many people with learning disabilities will enter long term care, and more so with increasing age.  Yet, whilst much attention has been given to understanding the quality of life of people with learning disabilities in such settings, very little is known about where and how they are supported at the end of their lives. A survey of learning disability service providers, incorporating VOICES (a nationally recognised approach to evaluating end-of-life) will aid our understanding of this important and significant issue, and critically will allow some comparison with the wider population.

End of life care has always had connections with learning disability, although this has seldom been a specific focus for research. Issues of mortality have come to fore in response to the lower life expectancy of people with learning disabilities and issues of poor access to and quality of  healthcare  have been highlighted as important concerns.  Such concerns have resulted in The Confidential Inquiry into Deaths of People with Learning Disabilities.  This has taken as its key concerns the detection of any potentially avoidable and modifiable features that may have contributed to the deaths of people with learning disabilities.  Such research is to be clearly welcomed.  However, a focus on preventable deaths is distinct from a focus on end-of-life care and there are distinct but important issues to address at such times.  Importantly, any extension of life for people with learning disabilities will only make end-of-life care issues more pressing and complex.  As people live longer, the illness associated with death tend to imply a longer phase of dying, necessitating specialised end of life care. Issues such as, what happens to people with learning disabilities at the end of their lives, where they die  and what quality of care they receive are clearly important.  There is, however, very little empirical evidence that investigates these.

This study seeks to provide such evidence for people with learning disabilities living in services within the independent sector at the end of their lives. Retrospective data will be obtained from a sample of UK providers on the type and quality of care provided in the last three months of life, and on individual and setting characteristics. The study seeks to address issues relating to the quality of end-of-life care and to identify some of the factors that may account for any potential variability. Such data will help advance our understanding of the quality of end-of-life care for people with learning disabilities, in ways that will aid the development of future research, policy and practice in this sensitive but significant and neglected area of learning disability care.

Project Team

Dr Katherine Hunt
Dr Stuart Todd
Dr Thilo Kroll
Dr Rachel Forrester
Prof Sue Reed
Prof Owen Barr


Bailey Thomas

Associated research themes

End of life care
Learning disability
Place of death
Evaluating services

Related research groups

Complex Healthcare Processes
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