Co-Designing a Toolkit of Approaches and Resources for End-of-Life Care Planning With People With Intellectual Disabilities Within Adult Social Care Settings: A Multi-Phase Study.
Irene Tuffrey-Wijne, Andrea Bruun, Elizabeth Tilley and 10 others
PMID 39929779WHAT IT FOUND
People with intellectual disabilities rejected easy-read forms for end-of-life planning as overwhelming.
They preferred pictorial resources and games that open conversations without pressure to make immediate choices. Support workers found these visual tools effective for engaging people who had never discussed death before.
Key findings
01Easy-read forms were dismissed by participants as too long and overwhelming, creating pressure rather than facilitating discussion.
02Pictorial resources and art-based approaches were favoured because they allowed people to express preferences without the constraint of yes/no choices or paperwork.
03Support workers reported that the new visual toolkit successfully opened conversations that had not previously happened, though uptake was limited by staff time pressures.
STILL TO COME
How it was doneWhat they foundWhat it means for OTs
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What it does not show
The sample was skewed towards people willing to discuss end-of-life care, potentially missing those who avoid the topic. People with severe or profound intellectual disabilities who communicate without words were mostly included by proxy, and the toolkit was not sufficiently tested with this group. The trial phase was shortened due to delays in co-design, limiting the number of testers. There is no evidence yet on how conversations facilitated by these tools are documented or acted upon in clinical records.
Declared interests
Gemma Allen, an author, developed and leads the 'No Barriers Here' approach included in the toolkit. Irene Tuffrey-Wijne was a trustee of 'Beyond Words' and co-authored one of the books used. The study was funded by the National Institute for Health and Care Research.
The easy way to misread this
Do not assume this toolkit has proven efficacy in improving end-of-life outcomes or reducing distress. The study reports on the acceptability and usability of the resources during development, not on their long-term clinical impact or ability to ensure wishes are respected in acute care.