Last months of life of people with intellectual disabilities: A UK population-based study of death and dying in intellectual disability community services.
care settings
end of life care
intellectual disability
mortality
place of death
Journal
Journal of applied research in intellectual disabilities : JARID
ISSN: 1468-3148
Titre abrégé: J Appl Res Intellect Disabil
Pays: England
ID NLM: 9613616
Informations de publication
Date de publication:
Nov 2020
Nov 2020
Historique:
received:
16
05
2019
revised:
09
03
2020
accepted:
29
03
2020
pubmed:
2
6
2020
medline:
19
8
2021
entrez:
2
6
2020
Statut:
ppublish
Résumé
Population-based data are presented on the nature of dying in intellectual disability services. 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. 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. 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.
Sections du résumé
BACKGROUND
BACKGROUND
Population-based data are presented on the nature of dying in intellectual disability services.
METHODS
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
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
CONCLUSIONS
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.
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
1245-1258Subventions
Organisme : Baily Thomas Charitable Fund
ID : 2781-5354
Informations de copyright
© 2020 The Authors. Journal of Applied Research in Intellectual Disabilities published by John Wiley & Sons Ltd.
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