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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

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
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
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.
1360-2322
Bernal, Jane
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Hunt, Katherine
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Worth, Rhian
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Shearn, Julia
94bf9c8a-1fd1-42aa-b48b-015ec6d5f2d9
Jones, Edwin
b7a74c54-b997-429d-a456-92178ed5c762
Lowe, Kathy
b2286a15-a237-4ec7-885a-408ad12e3f2e
Todd, Stuart
eb6dfd69-d7fc-4dcf-a0cf-5a38a5c1824c
Bernal, Jane
aef9f9e4-f91d-4e5a-87c5-ffac1947997a
Hunt, Katherine
5eab8123-1157-4d4e-a7d9-5fd817218c6e
Worth, Rhian
e541bdb8-d912-4b60-a0b8-144665b9c6eb
Shearn, Julia
94bf9c8a-1fd1-42aa-b48b-015ec6d5f2d9
Jones, Edwin
b7a74c54-b997-429d-a456-92178ed5c762
Lowe, Kathy
b2286a15-a237-4ec7-885a-408ad12e3f2e
Todd, Stuart
eb6dfd69-d7fc-4dcf-a0cf-5a38a5c1824c

Bernal, Jane, Hunt, Katherine, Worth, Rhian, Shearn, Julia, Jones, Edwin, Lowe, Kathy and Todd, Stuart (2020) 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. Journal of Applied Research in Intellectual Disabilities. (doi:10.1111/jar.12827).

Record type: Article

Abstract

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.

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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 - Accepted Manuscript
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Accepted/In Press date: 12 October 2020
e-pub ahead of print date: 30 November 2020

Identifiers

Local EPrints ID: 447574
URI: http://eprints.soton.ac.uk/id/eprint/447574
ISSN: 1360-2322
PURE UUID: c6e4f18f-c9ad-463a-aebe-5a28268fe29f
ORCID for Katherine Hunt: ORCID iD orcid.org/0000-0002-6173-7319

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Date deposited: 16 Mar 2021 17:34
Last modified: 02 Dec 2022 05:01

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Contributors

Author: Jane Bernal
Author: Katherine Hunt ORCID iD
Author: Rhian Worth
Author: Julia Shearn
Author: Edwin Jones
Author: Kathy Lowe
Author: Stuart Todd

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