ArticleJournal of applied research in intellectual disabilities : JARID2021
Consensus on a conversation aid for shared decision making with people with intellectual disabilities in the palliative phase.
Article in Journal of applied research in intellectual disabilities : JARID, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 4 papers.
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Who cites it
4 citing papers in PubMed.
- Access to choice‑enabled healthcare providers among children and adults with intellectual disabilities in comparison with the general population (IDcare).BMC health services research · 2026Article
- Eating Well When Living With an Intellectual Disability-Exploring the Carer: Client Relationship in Residential Settings.Journal of applied research in intellectual disabilities : JARID · 2025Article
- Co-Designing a Toolkit of Approaches and Resources for End-of-Life Care Planning With People With Intellectual Disabilities Within Adult Social Care Settings: A Multi-Phase Study.Journal of applied research in intellectual disabilities : JARID · 2025Article
- Top Ten Tips Palliative Care Clinicians Should Know About Providing Care for People With Disabilities.Journal of palliative medicine · 2024Article
Corrections and comments
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Authors and funding
7 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundLittle 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.
methodsIn 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.
resultsIn 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.
conclusionThe consensus-based conversation aid is considered sufficiently relevant and feasible to be implemented in practice.
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