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Published on: June 6, 2020
Consensus on a conversation aid for shared decision making with people with intellectual disabilities in the
Hanna W Noorlandt1, Ida J Korfage1, Irene Tuffrey-Wijne2
1Department of Public Health, Erasmus Medical Center Rotterdam, Rotterdam, Zuid-Holland, the Netherlands.
Background:
Little is known about how to involve people with intellectual disabilities in making decisions about treatment and care in their palliative phase. We aimed to reach a consensus about a shared decision-making (SDM) conversation aid for people with intellectual disabilities, relatives, and healthcare professionals.
Methods:
In a Delphi process, an expert panel of 11 people with intellectual disabilities, 14 relatives, and 65 healthcare professionals completed online questionnaires about the relevance and feasibility of a draft conversation aid.
Results:
In Round 1, components were rated as (very) relevant by 70-98% of participants (M = 87%). In Round 2, after amending the aid in response to feedback, relevance ratings were 67-97% (M = 90%) and feasibility ratings 66-86% (M = 77%). The final version consists of four themes: who are you; illness/end-of-life; making decisions; and evaluating the decision.
Conclusion:
The consensus-based conversation aid is considered sufficiently relevant and feasible to be implemented in practice.
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