Hidden lives and deaths: the last months of life of people with intellectual disabilities living in long‐term, generic care settings in the UK

Stuart Todd; Jane Bernal; Eleri Worth; Julia Shearn; Sarah Brearley; Mary McCarron; Katherine Hunt

doi:10.1111/jar.12891

Hidden lives and deaths: the last months of life of people with intellectual disabilities living in long‐term, generic care settings in the UK

Stuart Todd^*, Jane Bernal, Eleri Worth, Julia Shearn, Sarah Brearley, Mary McCarron, Katherine Hunt

^*Corresponding author for this work

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

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Abstract

Rationale: This paper concerns mortality and needs for end‐of‐life care in a population of adults with ID living in generic care homes.

Methods: Various sampling strategies were used to identify a difficult to find a population of people with ID in generic care homes. Demographic and health data were obtained for 132 people with ID. This included the Surprise Question. At T2, 12 months later, data were obtained on the survival of this sample.

Findings: The average age was 68.6 years, and the majority were women (55.3%). Their health was typically rated as good or better. Responses to the Surprise Question indicated that 23.3% respondents might need EoLC. At T2, 18.0% of this population had died. The average of death was 72.2 years. The majority died within the care setting (62.9%).

Implications: The implications for end‐of‐life care and mortality research are discussed.

Original language	English
Article number	12891
Pages (from-to)	1489-1498
Number of pages	10
Journal	Journal of Applied Research in Intellectual Disabilities
Volume	34
Issue number	6
Early online date	24 May 2021
DOIs	https://doi.org/10.1111/jar.12891
Publication status	Published - Nov 2021

Keywords

care homes
end‐of‐life care
mortality
older people
surprise question

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title = "Hidden lives and deaths: the last months of life of people with intellectual disabilities living in long‐term, generic care settings in the UK",

abstract = "Rationale: This paper concerns mortality and needs for end‐of‐life care in a population of adults with ID living in generic care homes. Methods: Various sampling strategies were used to identify a difficult to find a population of people with ID in generic care homes. Demographic and health data were obtained for 132 people with ID. This included the Surprise Question. At T2, 12 months later, data were obtained on the survival of this sample. Findings: The average age was 68.6 years, and the majority were women (55.3%). Their health was typically rated as good or better. Responses to the Surprise Question indicated that 23.3% respondents might need EoLC. At T2, 18.0% of this population had died. The average of death was 72.2 years. The majority died within the care setting (62.9%). Implications: The implications for end‐of‐life care and mortality research are discussed.",

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author = "Stuart Todd and Jane Bernal and Eleri Worth and Julia Shearn and Sarah Brearley and Mary McCarron and Katherine Hunt",

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Hidden lives and deaths: the last months of life of people with intellectual disabilities living in long‐term, generic care settings in the UK. / Todd, Stuart; Bernal, Jane; Worth, Eleri et al.
In: Journal of Applied Research in Intellectual Disabilities, Vol. 34, No. 6, 12891, 11.2021, p. 1489-1498.

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

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T1 - Hidden lives and deaths: the last months of life of people with intellectual disabilities living in long‐term, generic care settings in the UK

AU - Todd, Stuart

AU - Bernal, Jane

AU - Worth, Eleri

AU - Shearn, Julia

AU - Brearley, Sarah

AU - McCarron, Mary

AU - Hunt, Katherine

N1 - Funding Information: This study was funded by the Dunhill Medical Trust, Research Grant R406/0215. Publisher Copyright: © 2021 The Authors. Journal of Applied Research in Intellectual Disabilities published by John Wiley & Sons Ltd. © 2021 The Authors. Journal of Applied Research in Intellectual Disabilities published by John Wiley & Sons Ltd.

PY - 2021/11

Y1 - 2021/11

N2 - Rationale: This paper concerns mortality and needs for end‐of‐life care in a population of adults with ID living in generic care homes. Methods: Various sampling strategies were used to identify a difficult to find a population of people with ID in generic care homes. Demographic and health data were obtained for 132 people with ID. This included the Surprise Question. At T2, 12 months later, data were obtained on the survival of this sample. Findings: The average age was 68.6 years, and the majority were women (55.3%). Their health was typically rated as good or better. Responses to the Surprise Question indicated that 23.3% respondents might need EoLC. At T2, 18.0% of this population had died. The average of death was 72.2 years. The majority died within the care setting (62.9%). Implications: The implications for end‐of‐life care and mortality research are discussed.

AB - Rationale: This paper concerns mortality and needs for end‐of‐life care in a population of adults with ID living in generic care homes. Methods: Various sampling strategies were used to identify a difficult to find a population of people with ID in generic care homes. Demographic and health data were obtained for 132 people with ID. This included the Surprise Question. At T2, 12 months later, data were obtained on the survival of this sample. Findings: The average age was 68.6 years, and the majority were women (55.3%). Their health was typically rated as good or better. Responses to the Surprise Question indicated that 23.3% respondents might need EoLC. At T2, 18.0% of this population had died. The average of death was 72.2 years. The majority died within the care setting (62.9%). Implications: The implications for end‐of‐life care and mortality research are discussed.

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Hidden lives and deaths: the last months of life of people with intellectual disabilities living in long‐term, generic care settings in the UK

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