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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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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, S.; Bernal, J.; Worth, R.; Shearn, J.; Brearley, S.; McCarron, M.; Hunt, K.

In: Journal of Applied Research in Intellectual Disabilities, Vol. 34, No. 6, 30.11.2021, p. 1489-1498.

Research output: Contribution to Journal/MagazineJournal articlepeer-review

Harvard

Todd, S, Bernal, J, Worth, R, Shearn, J, Brearley, S, McCarron, M & Hunt, K 2021, 'Hidden lives and deaths: the last months of life of people with intellectual disabilities living in long-term, generic care settings in the UK', Journal of Applied Research in Intellectual Disabilities, vol. 34, no. 6, pp. 1489-1498. https://doi.org/10.1111/jar.12891

APA

Todd, S., Bernal, J., Worth, R., Shearn, J., Brearley, S., McCarron, M., & Hunt, K. (2021). Hidden lives and deaths: the last months of life of people with intellectual disabilities living in long-term, generic care settings in the UK. Journal of Applied Research in Intellectual Disabilities, 34(6), 1489-1498. https://doi.org/10.1111/jar.12891

Vancouver

Todd S, Bernal J, Worth R, Shearn J, Brearley S, McCarron M et al. Hidden lives and deaths: the last months of life of people with intellectual disabilities living in long-term, generic care settings in the UK. Journal of Applied Research in Intellectual Disabilities. 2021 Nov 30;34(6):1489-1498. https://doi.org/10.1111/jar.12891

Author

Todd, S. ; Bernal, J. ; Worth, R. ; Shearn, J. ; Brearley, S. ; McCarron, M. ; Hunt, K. / Hidden lives and deaths : the last months of life of people with intellectual disabilities living in long-term, generic care settings in the UK. In: Journal of Applied Research in Intellectual Disabilities. 2021 ; Vol. 34, No. 6. pp. 1489-1498.

Bibtex

@article{b17f797c50d74862bb3f37005bbe0148,
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. ",
keywords = "care homes, end-of-life care, mortality, older people, Surprise Question",
author = "S. Todd and J. Bernal and R. Worth and J. Shearn and S. Brearley and M. McCarron and K. Hunt",
year = "2021",
month = nov,
day = "30",
doi = "10.1111/jar.12891",
language = "English",
volume = "34",
pages = "1489--1498",
journal = "Journal of Applied Research in Intellectual Disabilities",
issn = "1360-2322",
publisher = "Wiley-Blackwell Publishing Ltd",
number = "6",

}

RIS

TY - JOUR

T1 - Hidden lives and deaths

T2 - the last months of life of people with intellectual disabilities living in long-term, generic care settings in the UK

AU - Todd, S.

AU - Bernal, J.

AU - Worth, R.

AU - Shearn, J.

AU - Brearley, S.

AU - McCarron, M.

AU - Hunt, K.

PY - 2021/11/30

Y1 - 2021/11/30

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. 

KW - care homes

KW - end-of-life care

KW - mortality

KW - older people

KW - Surprise Question

U2 - 10.1111/jar.12891

DO - 10.1111/jar.12891

M3 - Journal article

VL - 34

SP - 1489

EP - 1498

JO - Journal of Applied Research in Intellectual Disabilities

JF - Journal of Applied Research in Intellectual Disabilities

SN - 1360-2322

IS - 6

ER -