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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
Does Talking about End of Life with Adults with Intellectual Disability Cause Emotional Discomfort or Psychological Harm?
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Stancliffe, Roger J.; Wiese, Michele Y.; Read, Sue; Jeltes, Gail; Barton, Rebecca; Clayton, Josephine M. – Journal of Applied Research in Intellectual Disabilities, 2021
Background: Caregivers often avoid involving people with intellectual disability in end-of-life discussions and activities. One reason is fear that the person may become upset or psychologically harmed. Methods: Pre and post a 6-month intervention about end of life, we assessed depression, anxiety, and fear of death among intervention (n = 24) and…
Descriptors: Adults, Intellectual Disability, Emotional Response, Discussion
Using Action Research to Design Bereavement Software: Engaging People with Intellectual Disabilities for Effective Development
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Read, Sue; Nte, Sol; Corcoran, Patsy; Stephens, Richard – Journal of Applied Research in Intellectual Disabilities, 2013
Background: Loss is a universal experience and death is perceived as the ultimate loss. The overarching aim of this research is to produce a qualitative, flexible, interactive, computerised tool to support the facilitation of emotional expressions around loss for people with intellectual disabilities. This paper explores the process of using…
Descriptors: Foreign Countries, Adults, Mental Retardation, Death