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

被引：7

作者：

Noorlandt, Hanna W. ^{[1
]}

Korfage, Ida J. ^{[1
]}

Tuffrey-Wijne, Irene ^{[2
,3
]}

Festen, Dederieke ^{[4
]}

Vrijmoeth, Cis ^{[5
]}

van der Heide, Agnes ^{[1
]}

Echteld, Michael ^{[6
,7
]}

机构：

[1] Erasmus MC, Dept Publ Hlth, Rotterdam, Zuid Holland, Netherlands

[2] Kingston Univ, Fac Hlth Social Care & Educ Cranmer Terrace Londo, London, England

[3] St Georges Univ London, London, England

[4] Erasmus MC, Dept Gen Practice, Intellectual Disabil Med, Rotterdam, Zuid Holland, Netherlands

[5] Eleos De Hoop GGZ, Ctr Res & Innovat Christian Mental Hlth Care, Utrecht, Netherlands

[6] Avans Univ Appl Sci, Expertise Ctr Caring Soc, Breda, Noord Brabant, Netherlands

[7] Prisma Fdn, Waalwijk, Noord Brabant, Netherlands

来源：

JOURNAL OF APPLIED RESEARCH IN INTELLECTUAL DISABILITIES | 2021年 / 34卷 / 06期

关键词：

care for people with intellectual disabilities; conversation aid; Delphi study; end-of-life; palliative care; shared decision-making; UN CONVENTION; DEVELOPMENTAL-DISABILITIES; ARTICLE; 12; CARE; END; LIFE; PHYSICIANS; RIGHTS; AUTONOMY; ADULTS;

D O I：

10.1111/jar.12898

中图分类号：

G44 [教育心理学];

学科分类号：

0402 ; 040202 ;

摘要：

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.

引用

页码：1538 / 1548

页数：11

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