Assessing knowledge, planning for and fear of death

Abstract

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.

Citation

(2016). Assessing knowledge, planning for and fear of death. Journal of Intellectual Disability Research, 762 - 762. https://doi.org/10.1111/jir.12305

• Acceptance Date: Jul 22, 2016
• Publication Date: Jul 22, 2016
• Journal: Journal of Intellectual Disability Research
• Print ISSN: 0964-2633
• Publisher: Wiley
• Pages: 762 - 762
• DOI: https://doi.org/10.1111/jir.12305
• Publisher URL: http://dx.doi.org/10.1111/jir.12305