Knowing, planning for and fearing death: Do adults with intellectual disability and disability staff differ?
Adults with ID understand death less and fear it more than staff, so teach them about it plainly.
01Research in Context
What this study did
Researchers asked adults with intellectual disability about death. They compared answers to those of disability staff.
The team used a quasi-experimental design. They wanted to see who understood death better and who feared it more.
What they found
Adults with ID knew less about death. They had little knowledge of end-of-life planning.
They also feared death more than the staff. The gap was large and significant.
How this fits with other research
Cryan et al. (1996) saw the same fear pattern in youths with ID. Kids also showed more and younger-style fears.
Nijs et al. (2016) and Ohan et al. (2015) found large social-cognitive gaps in the same adult group. These studies show reading faces is hard; Faso et al. (2016) show grasping death is hard too.
Haider et al. (2013) mapped worse health and lower screening uptake. Together the papers paint a picture: adults with ID face many unseen risks.
Why it matters
You may assume clients do not think about death. This study says they do, and they are scared.
Add simple death-education and future-planning lessons to your adult programs. Use plain words, pictures, and role-play. When you ease fear, you boost self-determination and quality of life.
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Join Free →Start a 5-minute ‘what happens when’ talk during morning group. Use a simple storyboard to show ‘alive vs. not alive’ and let clients ask questions.
02At a glance
03Original abstract
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.
Research in developmental disabilities, 2016 · doi:10.1016/j.ridd.2015.11.016