<p>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.</p>

doi.org/10.1111/jar.12898, hdl.handle.net/1765/136823
Journal of Applied Research in Intellectual Disabilities
Erasmus MC: University Medical Center Rotterdam

H.W. (Hanna) Noorlandt, I.J. (Ida) Korfage, Irene Tuffrey-Wijne, D.A.M. (Dederieke) Maes - Festen, C (Cis) Vrijmoeth, A. (Agnes) van der Heide, & M.A. (Michael) Echteld. (2021). Consensus on a conversation aid for shared decision making with people with intellectual disabilities in the palliative phase. Journal of Applied Research in Intellectual Disabilities, 34(6), 1538–1548. doi:10.1111/jar.12898