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Consensus on a conversation aid for shared decision making with people with intellectual disabilities in the palliative phase
Author(s) -
Noorlandt Hanna W.,
Korfage Ida J.,
TuffreyWijne Irene,
Festen Dederieke,
Vrijmoeth Cis,
Heide Agnes,
Echteld Michael
Publication year - 2021
Publication title -
journal of applied research in intellectual disabilities
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.056
H-Index - 63
eISSN - 1468-3148
pISSN - 1360-2322
DOI - 10.1111/jar.12898
Subject(s) - conversation , delphi method , relevance (law) , intellectual disability , psychology , palliative care , health professionals , delphi , inclusion (mineral) , health care , conversation analysis , medical education , applied psychology , nursing , medicine , social psychology , computer science , psychiatry , political science , communication , artificial intelligence , law , operating system
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.