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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
Communicating about Death and Dying with Adults with Intellectual Disabilities Who Are Terminally Ill or Bereaved: A UK-Wide Survey of Intellectual Disability Support Staff
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Tuffrey-Wijne, Irene; Finlayson, Janet; Bernal, Jane; Taggart, Laurence; Lam, Claire Kar Kei; Todd, Stuart – Journal of Applied Research in Intellectual Disabilities, 2020
Background: Illness and death are part of life for everyone, including people with intellectual disabilities. This study investigated the extent to which staff communicate about death with people with intellectual disability facing terminal illness or bereavement. Method: Staff who support people with intellectual disability in the UK (n = 690)…
Descriptors: Death, Adults, Terminal Illness, Grief
"Being There": The Experiences of Staff in Dealing with Matters of Dying and Death in Services for People with Intellectual Disabilities
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Todd, Stuart – Journal of Applied Research in Intellectual Disabilities, 2013
Background: Research on staffed housing for people with intellectual disability has identified the challenges in achieving positive quality of life outcomes. However, a less well considered dimension of such services is that they are places of living and dying. This paper looks at the experiences of staff in dealing with issues of death and dying.…
Descriptors: Mental Retardation, Death, Caregivers, Coping