People with intellectual disabilities at the end of their lives: The case for specialist care?

Forrester-Jones, Rachel and Beecham, Jennifer and Barnoux, Magali F.L. and Oliver, David J. and Couch, Elyse and Bates, Claire (2017) People with intellectual disabilities at the end of their lives: The case for specialist care? Journal of Applied Research in Intellectual Disabilities, 30 (6). pp. 1138-1150. ISSN 1360-2322. E-ISSN 1468-3148. (doi:https://doi.org/10.1111/jar.12412) (Access to this publication is currently restricted. You may be able to access a copy if URLs are provided)

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Abstract

Background: People with intellectual disabilities have a shorter life expectancy, but healthcare improvements mean that they are beginning to live longer, with associated health difficulties. This means that there is an urgent need to focus research on ageing as well as end-of-life care. This study aimed to explore a specialist intellectual disability service for older people who are dying and how it related to their quality of life and to costs associated with care provided. Method: Data were collected for nine residents and 15 staff members of the specialist service. A single case study design with mixed methods including observations, interviews, standardized questionnaires and costs analysis was utilized. Results: We found positive results regarding overall quality of life, although individuals had limited social networks. Placement fees paid by local health trusts and social services departments were slightly higher than the estimated cost of care reflecting good financial management by a small voluntary sector organization. Conclusion: Whilst the philosophical arguments around “specialist” care persist, this service fills a gap in intellectual disability care provision.

Item Type: Article
Subjects: H Social Sciences
Divisions: Faculties > Social Sciences > School of Social Policy Sociology and Social Research
Faculties > Social Sciences > School of Social Policy Sociology and Social Research > Personal Social Services Research Unit
Faculties > Social Sciences > School of Social Policy Sociology and Social Research > Tizard
Depositing User: Rachel Forrester-Jones
Date Deposited: 11 Sep 2017 09:40 UTC
Last Modified: 20 Nov 2017 16:28 UTC
Resource URI: https://kar.kent.ac.uk/id/eprint/63362 (The current URI for this page, for reference purposes)
Beecham, Jennifer: https://orcid.org/0000-0001-5147-3383
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