Consensus on a conversation aid for shared decision making with people with intellectual disabilities in the palliative phase.
Hanna W Noorlandt, Ida J Korfage, Irene Tuffrey-Wijne and 4 others
PMID 34060161WHAT IT FOUND
Experts agreed on a 13-card conversation aid for shared decision-making with people with intellectual disabilities in palliative care.
The tool uses simple language, pictures, and a flexible, non-linear structure. It is not yet tested for effectiveness in practice.
Key findings
01The final aid consists of 13 components organized into four themes, with a guiding premise that 'you are important'.
02The aid is designed to be used flexibly and non-linearly, allowing the order of topics to change based on the person's needs.
03Experts rated the components as relevant and feasible, but the tool has not yet been tested in clinical practice.
STILL TO COME
How it was doneWhat they foundWhat it means for SLPs
Read the rest of this summary
You get three full summaries a month, free, and we do not ask for a card. Search, the TL;DRs and your library stay unlimited either way.
What it does not show
The study reached consensus on the tool's design and perceived feasibility, but did not test whether it actually improves decision-making outcomes or patient experience in real-world clinical settings. The Delphi panel was limited to experts in the Netherlands, so cultural adaptations may be needed for other countries. The participants with intellectual disabilities involved in the development had reasonable verbal ability, so the tool's effectiveness for people with severe communication difficulties or those who are non-verbal is not established. The aid may need further adjustment for people with auditory or visual impairments. There was a dropout rate of 19% between the first and second rounds of the expert panel.
Declared interests
The authors declare they have no competing interests.
The easy way to misread this
Do not assume this tool is proven to work. The study only established that experts agree the components are relevant and feasible to use. There is no evidence yet that using these cards leads to better health outcomes, reduced distress, or more accurate patient preferences compared to standard care.