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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
- Authors:
- TODD Stuart, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 34(6), 2021, pp.1489-1498.
- Publisher:
- Wiley
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. (Edited publisher abstract)
Caring for people with learning disabilities who are dying
- Authors:
- BLACKMAN Noelle, TODD Stuart
- Publisher:
- Worth
- Publication year:
- 2005
- Pagination:
- 53p.
- Place of publication:
- London
This book is about providing good end-of-life care in learning disabilities supported living services. Death and dying are parts of our lives that resonate with meaning and emotion. This account provides is a practical introduction.
Place of death of people with intellectual disabilities: an exploratory study of death and dying within community disability service settings
- Authors:
- TODD Stuart, et al
- Journal article citation:
- Journal of Intellectual Disabilities, 25(3), 2021, pp.296-311.
- Publisher:
- Sage
- Place of publication:
- London
This article describes an exploratory study of deaths of people with intellectual disabilities (IDs) that had occurred in group homes managed by an ID service provider in Australasia. Such settings are increasingly recognised as places for both living and dying. Little is known about the extent to which they encounter the death of a person with ID and with what outcomes. Data were obtained from service records and telephone interviews on 66 deaths occurring within a 2-year period. The findings suggest that death is an important but relatively rare event within ID services. This rate of death was influenced by the age structure of the population. Most of the deaths occurred within a hospital setting. Cause of death did not have much impact upon place of death. However, setting characteristics seemed to have some influence. As an exploratory study, lessons for future population-based research in this area are addressed. (Edited publisher abstract)
Last months of life of people with intellectual disabilities: a UK population‐based study of death and dying in intellectual disability community services
- Authors:
- TODD Stuart, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 33(6), 2020, pp.1245-1258.
- Publisher:
- Wiley
Background: Population‐based data are presented on the nature of dying in intellectual disability services. Methods: A retrospective survey was conducted over 18 months with a sample of UK‐based intellectual disability service providers that supported over 12,000. Core data were obtained for 222 deaths within this population. For 158 (71%) deaths, respondents returned a supplemented and modified version of VOICES‐SF. Results: The observed death was 12.2 deaths per 1,000 people supported per year, but just over a third deaths had been deaths anticipated by care staff. Mortality patterns, place of usual care and availability of external support exerted considerable influence over outcomes at the end of life. Conclusion: Death is not a common event in intellectual disability services. A major disadvantage experienced by people with intellectual disabilities was that their deaths were relatively unanticipated. People with intellectual disabilities living in supported living settings, even when their dying was anticipated, experienced poorer outcomes. (Edited publisher abstract)