Stancliffe, R, Weise, M, Read, SC, Jeltes, G and Clayton, J (2016) Knowing, planning for and fearing death: findings from adults with intellectual disabilities and disability staff. Journal of Intellectual Disability Research, 60 (7/8). 741 -741. ISSN 1365-2788

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Aim: Adults with intellectual disabilities (ID) are thought to understand less about death, but no comparisons are available to adults without ID. Research involving people with ID is silent on end-oflife planning and fear of death. Method: We compared the responses of 39 adults with mild or moderate ID and 40 disability staff on experience of death, understanding the concept of death, knowledge of and self-determination about end-of-life planning, and fear of death. Results: Adults with ID (95%) and disability staff (100%) reported that they had experienced the death of other people. We found that adults with ID had a significantly poorer understanding of the concept of death, knew much less about and were less selfdetermined about end-of-life planning, but reported greater fear of death. Conclusions: The poorer understanding and lower levels of self-determination we found suggest that future research should develop and evaluate interventions to increase understanding and self-determination about end of life.

Item Type: Article
Additional Information: Abstract as published within Journal of Intellectual Disability Research as Anon, 2016. Scientific Oral Presentations. Journal of Intellectual Disability Research, 60(7-8), pp.741–741 which has been published in final form at This article may be used for non-commercial purposes in accordance With Wiley Terms and Conditions for self-archiving.
Subjects: R Medicine > RT Nursing
Divisions: Faculty of Medicine and Health Sciences > Primary Care Health Sciences
Depositing User: Symplectic
Date Deposited: 15 Sep 2016 14:31
Last Modified: 11 Mar 2021 15:01

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