Cargando…
“A Real Bucket of Worms”: Views of People Living with Dementia and Family Members on Supported Decision-Making
Supported decision-making has been promoted at a policy level and within international human rights treaties as a way of ensuring that people with disabilities enjoy the right to legal capacity on an equal basis with others. However, little is known about the practical issues associated with impleme...
Autores principales: | , , , , , , , , , , , , , , |
---|---|
Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
Springer Singapore
2019
|
Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6937221/ https://www.ncbi.nlm.nih.gov/pubmed/31832863 http://dx.doi.org/10.1007/s11673-019-09945-x |
_version_ | 1783483835092041728 |
---|---|
author | Sinclair, Craig Gersbach, Kate Hogan, Michelle Blake, Meredith Bucks, Romola Auret, Kirsten Clayton, Josephine Stewart, Cameron Field, Sue Radoslovich, Helen Agar, Meera Martini, Angelita Gresham, Meredith Williams, Kathy Kurrle, Sue |
author_facet | Sinclair, Craig Gersbach, Kate Hogan, Michelle Blake, Meredith Bucks, Romola Auret, Kirsten Clayton, Josephine Stewart, Cameron Field, Sue Radoslovich, Helen Agar, Meera Martini, Angelita Gresham, Meredith Williams, Kathy Kurrle, Sue |
author_sort | Sinclair, Craig |
collection | PubMed |
description | Supported decision-making has been promoted at a policy level and within international human rights treaties as a way of ensuring that people with disabilities enjoy the right to legal capacity on an equal basis with others. However, little is known about the practical issues associated with implementing supported decision-making, particularly in the context of dementia. This study aimed to understand the experiences of people with dementia and their family members with respect to decision-making and their views on supported decision-making. Thirty-six interviews (twenty-one dyadic and fifteen individual) were undertaken with fifty-seven participants (twenty-five people living with dementia and thirty-two family members) across three states in Australia. Interpretative Phenomenological Analysis (IPA) was used as the methodological approach, with relational autonomy as a theoretical perspective. We identified two overarching themes relating to participants’ experiences with decision-making: “the person in relationship over time” and “maintaining involvement.” Participant views on the practical issues associated with supported decision-making are addressed under the themes of “facilitating decision-making,” “supported decision-making arrangements,” “constraints on decision-making,” and “safeguarding decision-making.” While participants endorsed the principles of supported decision-making as part of their overarching strategy of “maintaining involvement” in decision-making, they recognized that progressive cognitive impairment meant that there was an inevitable transition toward greater involvement of, and reliance upon, others in decision-making. Social and contextual “constraints on decision-making” also impacted on the ability of people with dementia to maintain involvement. These themes inform our proposal for a “spectrum approach” to decision-making involvement among people living with dementia, along with recommendations for policy and practice to assist in the implementation of supported decision-making within this population. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (10.1007/s11673-019-09945-x) contains supplementary material, which is available to authorized users. |
format | Online Article Text |
id | pubmed-6937221 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2019 |
publisher | Springer Singapore |
record_format | MEDLINE/PubMed |
spelling | pubmed-69372212020-01-09 “A Real Bucket of Worms”: Views of People Living with Dementia and Family Members on Supported Decision-Making Sinclair, Craig Gersbach, Kate Hogan, Michelle Blake, Meredith Bucks, Romola Auret, Kirsten Clayton, Josephine Stewart, Cameron Field, Sue Radoslovich, Helen Agar, Meera Martini, Angelita Gresham, Meredith Williams, Kathy Kurrle, Sue J Bioeth Inq Original Research Supported decision-making has been promoted at a policy level and within international human rights treaties as a way of ensuring that people with disabilities enjoy the right to legal capacity on an equal basis with others. However, little is known about the practical issues associated with implementing supported decision-making, particularly in the context of dementia. This study aimed to understand the experiences of people with dementia and their family members with respect to decision-making and their views on supported decision-making. Thirty-six interviews (twenty-one dyadic and fifteen individual) were undertaken with fifty-seven participants (twenty-five people living with dementia and thirty-two family members) across three states in Australia. Interpretative Phenomenological Analysis (IPA) was used as the methodological approach, with relational autonomy as a theoretical perspective. We identified two overarching themes relating to participants’ experiences with decision-making: “the person in relationship over time” and “maintaining involvement.” Participant views on the practical issues associated with supported decision-making are addressed under the themes of “facilitating decision-making,” “supported decision-making arrangements,” “constraints on decision-making,” and “safeguarding decision-making.” While participants endorsed the principles of supported decision-making as part of their overarching strategy of “maintaining involvement” in decision-making, they recognized that progressive cognitive impairment meant that there was an inevitable transition toward greater involvement of, and reliance upon, others in decision-making. Social and contextual “constraints on decision-making” also impacted on the ability of people with dementia to maintain involvement. These themes inform our proposal for a “spectrum approach” to decision-making involvement among people living with dementia, along with recommendations for policy and practice to assist in the implementation of supported decision-making within this population. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (10.1007/s11673-019-09945-x) contains supplementary material, which is available to authorized users. Springer Singapore 2019-12-12 2019 /pmc/articles/PMC6937221/ /pubmed/31832863 http://dx.doi.org/10.1007/s11673-019-09945-x Text en © The Author(s) 2019 Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. |
spellingShingle | Original Research Sinclair, Craig Gersbach, Kate Hogan, Michelle Blake, Meredith Bucks, Romola Auret, Kirsten Clayton, Josephine Stewart, Cameron Field, Sue Radoslovich, Helen Agar, Meera Martini, Angelita Gresham, Meredith Williams, Kathy Kurrle, Sue “A Real Bucket of Worms”: Views of People Living with Dementia and Family Members on Supported Decision-Making |
title | “A Real Bucket of Worms”: Views of People Living with Dementia and Family Members on Supported Decision-Making |
title_full | “A Real Bucket of Worms”: Views of People Living with Dementia and Family Members on Supported Decision-Making |
title_fullStr | “A Real Bucket of Worms”: Views of People Living with Dementia and Family Members on Supported Decision-Making |
title_full_unstemmed | “A Real Bucket of Worms”: Views of People Living with Dementia and Family Members on Supported Decision-Making |
title_short | “A Real Bucket of Worms”: Views of People Living with Dementia and Family Members on Supported Decision-Making |
title_sort | “a real bucket of worms”: views of people living with dementia and family members on supported decision-making |
topic | Original Research |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6937221/ https://www.ncbi.nlm.nih.gov/pubmed/31832863 http://dx.doi.org/10.1007/s11673-019-09945-x |
work_keys_str_mv | AT sinclaircraig arealbucketofwormsviewsofpeoplelivingwithdementiaandfamilymembersonsupporteddecisionmaking AT gersbachkate arealbucketofwormsviewsofpeoplelivingwithdementiaandfamilymembersonsupporteddecisionmaking AT hoganmichelle arealbucketofwormsviewsofpeoplelivingwithdementiaandfamilymembersonsupporteddecisionmaking AT blakemeredith arealbucketofwormsviewsofpeoplelivingwithdementiaandfamilymembersonsupporteddecisionmaking AT bucksromola arealbucketofwormsviewsofpeoplelivingwithdementiaandfamilymembersonsupporteddecisionmaking AT auretkirsten arealbucketofwormsviewsofpeoplelivingwithdementiaandfamilymembersonsupporteddecisionmaking AT claytonjosephine arealbucketofwormsviewsofpeoplelivingwithdementiaandfamilymembersonsupporteddecisionmaking AT stewartcameron arealbucketofwormsviewsofpeoplelivingwithdementiaandfamilymembersonsupporteddecisionmaking AT fieldsue arealbucketofwormsviewsofpeoplelivingwithdementiaandfamilymembersonsupporteddecisionmaking AT radoslovichhelen arealbucketofwormsviewsofpeoplelivingwithdementiaandfamilymembersonsupporteddecisionmaking AT agarmeera arealbucketofwormsviewsofpeoplelivingwithdementiaandfamilymembersonsupporteddecisionmaking AT martiniangelita arealbucketofwormsviewsofpeoplelivingwithdementiaandfamilymembersonsupporteddecisionmaking AT greshammeredith arealbucketofwormsviewsofpeoplelivingwithdementiaandfamilymembersonsupporteddecisionmaking AT williamskathy arealbucketofwormsviewsofpeoplelivingwithdementiaandfamilymembersonsupporteddecisionmaking AT kurrlesue arealbucketofwormsviewsofpeoplelivingwithdementiaandfamilymembersonsupporteddecisionmaking |