The last months of life of people with learning disabilities living in services in the UK

Research group: Dr Stuart Todd, Dr Rhian Worth and Julia Shearn

It is important that people with learning disabilities are supported well across the whole of their lives. However, very little is known about the quality of care people with learning disabilities receive at the end of their lives.

Our 30-month, UK-wide study aims to find about the quality of care that people with learning disabilities receive at the end of their lives. This study funded by the Baily Thomas Charitable Foundation looks at the last months of life of people with learning disabilities living in residential services, and is a UK-wide collaboration.

The study involves service providers who provide support to over 13,000 people with learning disabilities. We have been informed of the deaths of 247 people with learning disabilities and have received core data on these people, including average age, cause of death, and place of death.

A detailed questionnaire has been sent to a member of staff who knew the person who died. This questionnaire looks at how they died and the care the person received in the time leading up to their death.

This questionnaire has incorporated an adapted version of the VOICES questionnaire (Addington-Hall, Walker, Jones, Karlsen & McCarthy, 1998; Hunt & Addington-Hall, 2011) which is used to assess the quality of end-of-life care for people in the general population. Over 60% of these more detailed questionnaires have been returned.

It is anticipated that this study will lead to the development of an approach to end-of life-care research that can be replicated nationally and internationally for people with learning disabilities.

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