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Irene Tuffrey-Wijne; Andrea Bruun; Elizabeth Tilley; Jo Giles; Sarah Gibson; Amanda Cresswell; Richard Keagan-Bull; Leon Jordan; Gemma Allen; Sarah Swindells; Nicola Payne; Rhidian Hughes; Rebecca Anderson-Kittow – Journal of Applied Research in Intellectual Disabilities, 2025
Background: People with intellectual disabilities are rarely involved in end-of-life decisions. This study investigated and further developed approaches and resources to enable inclusive end-of-life care planning. Methods: A multi-centre, multi-method four-phase study, involving 195 researchers, participants, advisors and co-design members,…
Descriptors: Terminal Illness, Older Adults, Planning, Intellectual Disability
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Weiler, Spencer; Birnbaum, Matthew; Westbrook, Philip – Educational Policy, 2023
Due to advances in medical treatments, students with terminal illnesses are more likely to attend public schools, increasing the possibility that they may die on school property. However, educational health plans often fail to consider end-of-life care decisions. In the absence of federal or state statutes, school boards are left to navigate the…
Descriptors: Children, Youth, Adolescents, School Districts
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Connor, Eilis O.; Corcoran, Yvonne – Journal of Intellectual Disabilities, 2022
This study elicited the experiences of nurses caring for children with life-limiting conditions and their family, within a community based intellectual disability service. A qualitative descriptive research approach was adopted where purposeful sampling recruited 10 participants. Data was collected using one to one semi-structured interviews and…
Descriptors: Nurses, Children, Intellectual Disability, At Risk Persons