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ERIC Number: EJ1284949
Record Type: Journal
Publication Date: 2021-Mar
Pages: 12
Abstractor: As Provided
ISBN: N/A
ISSN: ISSN-1360-2322
EISSN: N/A
Available Date: N/A
Expecting the Unexpected: Measures, Outcomes and Dying Trajectories for Expected and Unexpected Death in Adults with Intellectual Disabilities in Social Care Settings in the UK
Bernal, Jane; Hunt, Katherine; Worth, Rhian; Shearn, Julia; Jones, Edwin; Lowe, Kathy; Todd, Stuart
Journal of Applied Research in Intellectual Disabilities, v34 n2 p594-605 Mar 2021
Background: Considerable attention is rightly paid to preventable deaths in adults with intellectual disabilities. The pattern of these deaths and the implications for services have been less considered. Method: This paper forms part of a larger cross-sectional study of deaths in a defined population of adults with intellectual disabilities. Data from VOICES-SF were obtained from intellectual disability service providers for each death within their supported population over 18 months, 149 decedents in all. Results: Only 34.2% of deaths were anticipated, death was often sudden or followed a short illness. Four dying trajectories were identified, and categorized by length of illness, service use, care outcomes, symptom control and cause of death. Conclusions: Recognition that most deaths in this group were unanticipated implies a need for better preparation for less expected dying and better anticipation. A descriptive epidemiology of dying among people with intellectual disabilities is needed.
Wiley. Available from: John Wiley & Sons, Inc. 111 River Street, Hoboken, NJ 07030. Tel: 800-835-6770; e-mail: cs-journals@wiley.com; Web site: https://www-wiley-com.bibliotheek.ehb.be/en-us
Publication Type: Journal Articles; Reports - Research
Education Level: N/A
Audience: N/A
Language: English
Sponsor: N/A
Authoring Institution: N/A
Identifiers - Location: United Kingdom
Grant or Contract Numbers: N/A
Author Affiliations: N/A