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Gaining insight into the views of outpatients with Huntington’s disease regarding their future and the way they deal with their poor prognosis: a qualitative study
BACKGROUND: Huntington’s disease (HD) has a poor prognosis. Decision-making capacity and communication ability may become lost as the disease progresses. Therefore, HD patients are encouraged to engage in advance care planning (ACP). To improve ACP for HD patients, there is a need to better understa...
Autores principales: | , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
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BioMed Central
2021
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7802313/ https://www.ncbi.nlm.nih.gov/pubmed/33435952 http://dx.doi.org/10.1186/s12904-020-00706-x |
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author | Ekkel, Marina R. Depla, Marja F. I. A. Verschuur, Els M. L. Veenhuizen, Ruth B. Hertogh, Cees M. P. M. Onwuteaka-Philipsen, Bregje D. |
author_facet | Ekkel, Marina R. Depla, Marja F. I. A. Verschuur, Els M. L. Veenhuizen, Ruth B. Hertogh, Cees M. P. M. Onwuteaka-Philipsen, Bregje D. |
author_sort | Ekkel, Marina R. |
collection | PubMed |
description | BACKGROUND: Huntington’s disease (HD) has a poor prognosis. Decision-making capacity and communication ability may become lost as the disease progresses. Therefore, HD patients are encouraged to engage in advance care planning (ACP). To improve ACP for HD patients, there is a need to better understand how these patients face their poor prognosis. AIM: To gain insight into the views of HD patients who receive outpatient care regarding their future and the way they deal with the poor prognosis of their disease. METHODS: A qualitative study using semi-structured interviews with 12 patients with HD (7 outpatient clinic, 3 day care, 2 assisted living facility). Audio-recorded interviews were transcribed verbatim. Through reading and re-reading interviews, writing memos and discussions in the research team, strategies were identified. RESULTS: Three strategies emerged for facing a future with HD. Participants saw the future: 1) as a period that you have to prepare for; 2) as a period that you would rather not think about; 3) as a period that you do not have to worry about yet. Participants could adopt more than one strategy at a time. Even though participants realized that they would deteriorate and would need more care in the future, they tried to keep this knowledge ‘at a distance’, with the motivation of keeping daily life as manageable as possible. CONCLUSIONS: Official ACP guidelines recommend discussing goals and preferences for future treatment and care, but patients tend to want to live in the present. Further research is needed to elucidate the best approach to deal with this discrepancy. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12904-020-00706-x. |
format | Online Article Text |
id | pubmed-7802313 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2021 |
publisher | BioMed Central |
record_format | MEDLINE/PubMed |
spelling | pubmed-78023132021-01-13 Gaining insight into the views of outpatients with Huntington’s disease regarding their future and the way they deal with their poor prognosis: a qualitative study Ekkel, Marina R. Depla, Marja F. I. A. Verschuur, Els M. L. Veenhuizen, Ruth B. Hertogh, Cees M. P. M. Onwuteaka-Philipsen, Bregje D. BMC Palliat Care Research Article BACKGROUND: Huntington’s disease (HD) has a poor prognosis. Decision-making capacity and communication ability may become lost as the disease progresses. Therefore, HD patients are encouraged to engage in advance care planning (ACP). To improve ACP for HD patients, there is a need to better understand how these patients face their poor prognosis. AIM: To gain insight into the views of HD patients who receive outpatient care regarding their future and the way they deal with the poor prognosis of their disease. METHODS: A qualitative study using semi-structured interviews with 12 patients with HD (7 outpatient clinic, 3 day care, 2 assisted living facility). Audio-recorded interviews were transcribed verbatim. Through reading and re-reading interviews, writing memos and discussions in the research team, strategies were identified. RESULTS: Three strategies emerged for facing a future with HD. Participants saw the future: 1) as a period that you have to prepare for; 2) as a period that you would rather not think about; 3) as a period that you do not have to worry about yet. Participants could adopt more than one strategy at a time. Even though participants realized that they would deteriorate and would need more care in the future, they tried to keep this knowledge ‘at a distance’, with the motivation of keeping daily life as manageable as possible. CONCLUSIONS: Official ACP guidelines recommend discussing goals and preferences for future treatment and care, but patients tend to want to live in the present. Further research is needed to elucidate the best approach to deal with this discrepancy. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12904-020-00706-x. BioMed Central 2021-01-12 /pmc/articles/PMC7802313/ /pubmed/33435952 http://dx.doi.org/10.1186/s12904-020-00706-x Text en © The Author(s) 2021 Open AccessThis 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/. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data. |
spellingShingle | Research Article Ekkel, Marina R. Depla, Marja F. I. A. Verschuur, Els M. L. Veenhuizen, Ruth B. Hertogh, Cees M. P. M. Onwuteaka-Philipsen, Bregje D. Gaining insight into the views of outpatients with Huntington’s disease regarding their future and the way they deal with their poor prognosis: a qualitative study |
title | Gaining insight into the views of outpatients with Huntington’s disease regarding their future and the way they deal with their poor prognosis: a qualitative study |
title_full | Gaining insight into the views of outpatients with Huntington’s disease regarding their future and the way they deal with their poor prognosis: a qualitative study |
title_fullStr | Gaining insight into the views of outpatients with Huntington’s disease regarding their future and the way they deal with their poor prognosis: a qualitative study |
title_full_unstemmed | Gaining insight into the views of outpatients with Huntington’s disease regarding their future and the way they deal with their poor prognosis: a qualitative study |
title_short | Gaining insight into the views of outpatients with Huntington’s disease regarding their future and the way they deal with their poor prognosis: a qualitative study |
title_sort | gaining insight into the views of outpatients with huntington’s disease regarding their future and the way they deal with their poor prognosis: a qualitative study |
topic | Research Article |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7802313/ https://www.ncbi.nlm.nih.gov/pubmed/33435952 http://dx.doi.org/10.1186/s12904-020-00706-x |
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