Cargando…
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...
Autores principales: | , , , , , , |
---|---|
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 |
_version_ | 1784600468397228032 |
---|---|
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. |
format | Online Article Text |
id | pubmed-8596803 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2021 |
publisher | John Wiley and Sons Inc. |
record_format | MEDLINE/PubMed |
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 |
work_keys_str_mv | AT noorlandthannaw consensusonaconversationaidforshareddecisionmakingwithpeoplewithintellectualdisabilitiesinthepalliativephase AT korfageidaj consensusonaconversationaidforshareddecisionmakingwithpeoplewithintellectualdisabilitiesinthepalliativephase AT tuffreywijneirene consensusonaconversationaidforshareddecisionmakingwithpeoplewithintellectualdisabilitiesinthepalliativephase AT festendederieke consensusonaconversationaidforshareddecisionmakingwithpeoplewithintellectualdisabilitiesinthepalliativephase AT vrijmoethcis consensusonaconversationaidforshareddecisionmakingwithpeoplewithintellectualdisabilitiesinthepalliativephase AT vanderheideagnes consensusonaconversationaidforshareddecisionmakingwithpeoplewithintellectualdisabilitiesinthepalliativephase AT echteldmichael consensusonaconversationaidforshareddecisionmakingwithpeoplewithintellectualdisabilitiesinthepalliativephase |