Keele UniversityFaculty of Health
School of Nursing and Midwifery
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Measuring and evaluating end-of-life care in Services for Adults with Learning Disabilities
Professor Sue Read, School of Nursing & Midwifery and RISS, is a collaborator on a successful grant application for a project entitled 'Measuring and evaluating end-of-life care in services for adults with learning disabilities in the UK'. The research study, led by Dr Stuart Todd, Unit for the Development of Intellectual Disabilities, Glamorgan University, has been awarded £98,000 by The Baily Thomas Charitable Trust. The 30-month study aims to understand the end of life care phase of adults with learning disabilities living in 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 enhance understanding of this important and significant issue, and critically will allow some comparison with the wider population.
The collaboration brings together academics and practitioners with internationally recognised expertise in research in end of life care, death, and learning disabilities, Moreover, the expertise and commitment from members of the collaboration concerning this important field of study will maximise both nationally and internationally, the widespread and effective dissemination of the study's findings to professionals, policy makers and academics.
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