Weise, M, Stancliffe, R, Read, SC, Jeltes, G and Clayton, J (2016) Assessing knowledge, planning for and fear of death. Journal of Intellectual Disability Research, 60 (7/8). 762 - 762. ISSN 1365-2788

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Aim: Few self-report instruments about dying and death are available for people with intellectual disability (ID). The Dying to Talk project in Sydney, Australia measured knowledge about death, understanding and self-determination of end-of-life planning, and fear of death. This paper reports on the instruments used. Method: We describe the use, adaptation, piloting and content of these instruments, including development of a new instrument on end-of-life planning. Participants included 39 adults with ID and 40 adults without ID (disability staff).All were assessed by individual interview on all three instruments. A subsample was scored independently by a second rater. Results: Internal consistency and inter-rater agreement were good for each scale. People with ID were willing and able to provide scorable answers for almost all items, with a higher level of non-response on certain fear-ofdeath items. Conclusions: We found the instruments were usable, reliable and valid for people with and without ID. Availability of such instruments will facilitate future research, intervention and practice.

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.628–767 which has been published in final form at http://dx.doi.org/10.1111/jir.12305 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 13:49
Last Modified: 11 Mar 2021 14:13
URI: https://eprints.keele.ac.uk/id/eprint/2190

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