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Consensus on a conversation aid for shared decision making with people with intellectual disabilities in the palliative phase

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NOORLANDT, Hanna W. | KORFAGE, Ida J. | TUFFREY-WIJNE, Irene | FESTEN, Dederieke | VRIJMOETH, Cis | VAN DER HEIDE, Agnes | ECHTELD, Michael A.

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.

http://dx.doi.org/10.1111/jar.12898

Voir la revue «Journal of applied research in intellectual disabilities»

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