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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
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Bernal, Jane; Hunt, Katherine; Worth, Rhian; Shearn, Julia; Jones, Edwin; Lowe, Kathy; Todd, Stuart – Journal of Applied Research in Intellectual Disabilities, 2021
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…
Descriptors: Foreign Countries, Death, Adults, Intellectual Disability
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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Todd, Stuart; Bernal, Jane; Worth, Rhian; Shearn, Julia; Brearley, Sarah; McCarron, Mary; Hunt, Katherine – Journal of Applied Research in Intellectual Disabilities, 2021
Background: 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…
Descriptors: Foreign Countries, Death, Intellectual Disability, Older Adults
Last Months of Life of People with Intellectual Disabilities: A UK Population-Based Study of Death and Dying in Intellectual Disability Community Services
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Todd, Stuart; Bernal, Jane; Shearn, Julia; Worth, Rhian; Jones, Edwin; Lowe, Kathy; Madden, Phil; Barr, Owen; Forrester Jones, Rachel; Jarvis, Paul; Kroll, Thilo; McCarron, Mary; Read, Sue; Hunt, Katherine – Journal of Applied Research in Intellectual Disabilities, 2020
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,…
Descriptors: Foreign Countries, Death, Intellectual Disability, Mortality Rate