Knowing, planning for and fearing death: Do adults with intellectual disability and disability staff differ?

Roger J. Stancliffe, Michele Y. Wiese, Sue Read, Gail Jeltes, Josephine M. Clayton

Research output: Contribution to journalArticlepeer-review

43 Scopus citations


Background: Adults with intellectual disability (ID) are thought to understand less about death than the general population but there is no available research demonstrating this. Further, the detail of any possible differences in understanding is unknown. Methods: We compared the responses of 39 adults with mild or moderate ID and 40 disability staff (representing the general population) on (a) understanding the concept of death, (b) knowledge of and self-determination about end-of-life planning, and (c) fear-of-death. Results: We found that adults with ID had a significantly poorer understanding of the concept of death, knew much less about and were less self-determined about end-of-life planning, but reported greater fear-of-death. ConclusionsWe demonstrated, for the first time, the feasibility of assessing end-of-life planning and fear-of-death among adults with ID. 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.

Original languageEnglish (US)
Pages (from-to)47-59
Number of pages13
JournalResearch in Developmental Disabilities
StatePublished - Feb 1 2016
Externally publishedYes

Bibliographical note

Funding Information:
We thank participants from ACL Disability Services, The Housing Connection, Catholic Care Woods Cottage, The Australian Foundation for Disability (AFFORD), and Northcott. This research was supported under the Australian Research Council's Linkage Projects scheme (Project number: LP130100300 ) and with the assistance of a disability industry partner, Sunshine. The views expressed are those of the authors and are not necessarily those of the Australian Research Council or the industry partner.

Publisher Copyright:
© 2015 Elsevier Ltd.


  • Death
  • End-of-life
  • Fear-of-death
  • Intellectual disability
  • Planning
  • Staff


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