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

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...

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Autores principales: Noorlandt, Hanna W., Korfage, Ida J., Tuffrey‐Wijne, Irene, Festen, Dederieke, Vrijmoeth, Cis, van der Heide, Agnes, Echteld, Michael
Formato: Online Artículo Texto
Lenguaje:English
Publicado: John Wiley and Sons Inc. 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8596803/
https://www.ncbi.nlm.nih.gov/pubmed/34060161
http://dx.doi.org/10.1111/jar.12898
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author Noorlandt, Hanna W.
Korfage, Ida J.
Tuffrey‐Wijne, Irene
Festen, Dederieke
Vrijmoeth, Cis
van der Heide, Agnes
Echteld, Michael
author_facet Noorlandt, Hanna W.
Korfage, Ida J.
Tuffrey‐Wijne, Irene
Festen, Dederieke
Vrijmoeth, Cis
van der Heide, Agnes
Echteld, Michael
author_sort Noorlandt, Hanna W.
collection PubMed
description 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.
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spelling pubmed-85968032021-11-22 Consensus on a conversation aid for shared decision making with people with intellectual disabilities in the palliative phase Noorlandt, Hanna W. Korfage, Ida J. Tuffrey‐Wijne, Irene Festen, Dederieke Vrijmoeth, Cis van der Heide, Agnes Echteld, Michael J Appl Res Intellect Disabil Original Articles 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. John Wiley and Sons Inc. 2021-06-01 2021-11 /pmc/articles/PMC8596803/ /pubmed/34060161 http://dx.doi.org/10.1111/jar.12898 Text en © 2021 The Authors. Journal of Applied Research in Intellectual Disabilities published by John Wiley & Sons Ltd. https://creativecommons.org/licenses/by/4.0/This is an open access article under the terms of the http://creativecommons.org/licenses/by/4.0/ (https://creativecommons.org/licenses/by/4.0/) License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.
spellingShingle Original Articles
Noorlandt, Hanna W.
Korfage, Ida J.
Tuffrey‐Wijne, Irene
Festen, Dederieke
Vrijmoeth, Cis
van der Heide, Agnes
Echteld, Michael
Consensus on a conversation aid for shared decision making with people with intellectual disabilities in the palliative phase
title Consensus on a conversation aid for shared decision making with people with intellectual disabilities in the palliative phase
title_full Consensus on a conversation aid for shared decision making with people with intellectual disabilities in the palliative phase
title_fullStr Consensus on a conversation aid for shared decision making with people with intellectual disabilities in the palliative phase
title_full_unstemmed Consensus on a conversation aid for shared decision making with people with intellectual disabilities in the palliative phase
title_short Consensus on a conversation aid for shared decision making with people with intellectual disabilities in the palliative phase
title_sort consensus on a conversation aid for shared decision making with people with intellectual disabilities in the palliative phase
topic Original Articles
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8596803/
https://www.ncbi.nlm.nih.gov/pubmed/34060161
http://dx.doi.org/10.1111/jar.12898
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