Final published version
Licence: CC BY-NC-ND: Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License
Research output: Contribution to Journal/Magazine › Journal article › peer-review
Research output: Contribution to Journal/Magazine › Journal article › peer-review
}
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 -