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People with intellectual disabilities at the end of their lives: The case for specialist care?
Author(s) -
ForresterJones Rachel,
Beecham Jennifer K.,
Barnoux Magali,
Oliver David,
Couch Elyse,
Bates Claire
Publication year - 2017
Publication title -
journal of applied research in intellectual disabilities
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.056
H-Index - 63
eISSN - 1468-3148
pISSN - 1360-2322
DOI - 10.1111/jar.12412
Subject(s) - intellectual disability , life expectancy , service (business) , end of life care , voluntary sector , nursing , quality of life (healthcare) , health care , social care , medicine , psychology , gerontology , business , palliative care , public relations , psychiatry , marketing , environmental health , economic growth , population , economics , political science
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.