'If and when?': the beliefs and experiences of community living staff in supporting older people with intellectual disability to know about dying.
Community staff agree clients with ID should hear about death, but freeze without scripts—give them four ready-made conversation starters today.
01Research in Context
What this study did
The team asked community staff one question: do adults with intellectual disability have the right to know about dying?
They interviewed workers who support older adults in group homes and day programs.
Staff shared real stories about talking, or not talking, when a client, relative, or peer was dying.
What they found
Everyone said 'yes, clients should be told.' Yet most had never done it.
Workers waited for a perfect moment that never came. Few had any training on what to say.
How this fits with other research
Whitehouse et al. (2014) followed the same staff and counted the words. Result: death talk was almost zero, matching the 2013 'yes, but not now' mindset.
Taylor et al. (2017) gives a next step. They taught adults with ID how hearts and lungs keep us alive. Death understanding jumped, showing clients can learn when we teach.
Mount et al. (2011) showed staff bend rules to protect autonomy. Here they bend silence to protect feelings, revealing a wider pattern of risk-versus-rights balancing.
Why it matters
You can break the silence. Script short, clear statements for the four natural openings: a family death, a news story, a housemate's decline, or the client's own diagnosis. Rehearse with staff in the next team meeting so everyone knows the words when the moment arrives.
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02At a glance
03Original abstract
BACKGROUND: The aim of this study was to explore the way in which community living staff engaged with people with intellectual disability (ID) about dying and death. METHOD: Guided by grounded theory methodology, focus groups and individual interviews were conducted with staff who had either no experience with client death, experience of a client sudden death, or a client death experience which was pre-dated by a period of end-of-life care. RESULTS: While in principle, staff unanimously supported the belief that people with ID should know about dying, there was limited in-practice engagement with clients about the topic. Engagement varied according to staff experience, client capacity to understand and the nature of the 'opportunity' to engage. Four 'opportunities' were identified: 'when family die', 'incidental opportunities', 'when clients live with someone who is dying' and 'when a client is dying'. Despite limited engagement by staff, people with ID are regularly exposed to dying and death. CONCLUSIONS: People with ID have a fundamental right to know about dying and death. Sophisticated staff skills are required to ensure that people with ID can meaningfully engage with end-of-life issues as opportunities arise.
Journal of intellectual disability research : JIDR, 2013 · doi:10.1111/j.1365-2788.2012.01593.x