TY - JOUR
T1 - Knowing, planning for and fearing death : do adults with intellectual disability and disability staff differ?
AU - Stancliffe, Roger J.
AU - Wiese, Michele Y.
AU - Read, Sue
AU - Jeltes, Gail
AU - Clayton, Josephine M.
PY - 2016
Y1 - 2016
N2 - 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. Conclusions: We 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. Please note a corrigendum for this article is available via http://handle.westernsydney.edu.au:8081/1959.7/uws:42143
AB - 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. Conclusions: We 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. Please note a corrigendum for this article is available via http://handle.westernsydney.edu.au:8081/1959.7/uws:42143
KW - death
KW - fear of death
KW - older people
KW - people with mental disabilities
KW - terminal care
UR - http://handle.uws.edu.au:8081/1959.7/uws:37195
U2 - 10.1016/j.ridd.2015.11.016
DO - 10.1016/j.ridd.2015.11.016
M3 - Article
SN - 0891-4222
VL - 49-50
SP - 47
EP - 59
JO - Research in Developmental Disabilities
JF - Research in Developmental Disabilities
ER -