Todd, S, Bernal, J, Shearn, J, Worth, R, Jones, E, Lowe, K, Madden, P, Barr, O, Forrester Jones, R, Jarvis, P, Kroll, T, McCarron, M, Read, S and Hunt, K (2020) Last months of life of people with intellectual disabilities: A UK population-based study of death and dying in intellectual disability community services. Journal of Applied Research in Intellectual Disabilities. ISSN 1468-3148

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BACKGROUND: Population-based data are presented on the nature of dying in intellectual disability services. METHODS: A retrospective survey was conducted over 18 months with a sample of UK-based intellectual disability service providers that supported over 12,000. Core data were obtained for 222 deaths within this population. For 158 (71%) deaths, respondents returned a supplemented and modified version of VOICES-SF. RESULTS: The observed death was 12.2 deaths per 1,000 people supported per year, but just over a third deaths had been deaths anticipated by care staff. Mortality patterns, place of usual care and availability of external support exerted considerable influence over outcomes at the end of life. CONCLUSION: Death is not a common event in intellectual disability services. A major disadvantage experienced by people with intellectual disabilities was that their deaths were relatively unanticipated. People with intellectual disabilities living in supported living settings, even when their dying was anticipated, experienced poorer outcomes.

Item Type: Article
Additional Information: © 2020 The Authors. Journal of Applied Research in Intellectual Disabilities published by John Wiley & Sons Ltd This is an open access article under the terms of the Creative Commons Attribution‐NonCommercial‐NoDerivs License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non‐commercial and no modifications or adaptations are made.
Uncontrolled Keywords: care settings, end of life care, intellectual disability, mortality, place of death
Subjects: R Medicine > R Medicine (General)
R Medicine > RA Public aspects of medicine
R Medicine > RC Internal medicine > RC346 Neurology. Diseases of the nervous system, including speech disorders
R Medicine > RT Nursing
Divisions: Faculty of Medicine and Health Sciences > School of Nursing and Midwifery
Related URLs:
Depositing User: Symplectic
Date Deposited: 19 Jun 2020 08:04
Last Modified: 19 Jun 2020 08:04

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