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

Jane Bernal; Katherine Hunt; Eleri Worth; Julia Shearn; Edwin Jones; Kathy Lowe; Stuart Todd

doi:10.1111/jar.12827

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

Jane Bernal, Katherine Hunt, Eleri Worth, Julia Shearn, Edwin Jones, Kathy Lowe, Stuart Todd

Research output: Contribution to journal › Article › peer-review

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.

Original language	English
Article number	12827
Pages (from-to)	594-605
Number of pages	12
Journal	Journal of Applied Research in Intellectual Disabilities
Volume	34
Issue number	2
Early online date	30 Nov 2020
DOIs	https://doi.org/10.1111/jar.12827
Publication status	Published - 1 Mar 2021

Keywords

End of life care
Mortality
Dying trajectories
Unexpected death
Death and dying
Intellectual disabilities

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

Access to Document

10.1111/jar.12827Licence: Unspecified

1 Types of External academic engagement - Contribution to the work of national or international committees and working groups

International Research collaboration: Death, Dying and Intellectual Disability
Stuart Todd (Lecturer)
1 May 2020
Activity: Other › Types of External academic engagement - Contribution to the work of national or international committees and working groups

Cite this

Bernal, J., Hunt, K., Worth, E., Shearn, J., Jones, E., Lowe, K., & Todd, S. (2021). 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, 34(2), 594-605. Article 12827. https://doi.org/10.1111/jar.12827

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title = "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",

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.",

keywords = "End of life care, Mortality, Dying trajectories, Unexpected death, Death and dying, Intellectual disabilities",

author = "Jane Bernal and Katherine Hunt and Eleri Worth and Julia Shearn and Edwin Jones and Kathy Lowe and Stuart Todd",

note = "The research was funded by the Baily Thomas Charitable Fund. Grant number 2781/5354 {\textcopyright} 2020 John Wiley & Sons Ltd.",

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language = "English",

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Bernal, J, Hunt, K, Worth, E, Shearn, J, Jones, E, Lowe, K & Todd, S 2021, '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, vol. 34, no. 2, 12827, pp. 594-605. https://doi.org/10.1111/jar.12827

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, Eleri et al.
In: Journal of Applied Research in Intellectual Disabilities, Vol. 34, No. 2, 12827, 01.03.2021, p. 594-605.

Research output: Contribution to journal › Article › peer-review

TY - JOUR

T1 - 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

AU - Bernal, Jane

AU - Hunt, Katherine

AU - Worth, Eleri

AU - Shearn, Julia

AU - Jones, Edwin

AU - Lowe, Kathy

AU - Todd, Stuart

PY - 2021/3/1

Y1 - 2021/3/1

N2 - 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.

AB - 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.

KW - End of life care

KW - Mortality

KW - Dying trajectories

KW - Unexpected death

KW - Death and dying

KW - Intellectual disabilities

U2 - 10.1111/jar.12827

DO - 10.1111/jar.12827

M3 - Article

C2 - 33258299

SN - 1360-2322

VL - 34

SP - 594

EP - 605

JO - Journal of Applied Research in Intellectual Disabilities

JF - Journal of Applied Research in Intellectual Disabilities

IS - 2

M1 - 12827

ER -

Bernal J, Hunt K, Worth E, Shearn J, Jones E, Lowe K et al. 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. 2021 Mar 1;34(2):594-605. 12827. Epub 2020 Nov 30. doi: 10.1111/jar.12827

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

Abstract

Keywords

UN SDGs

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Activities

International Research collaboration: Death, Dying and Intellectual Disability

Cite this