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Family members’ expressions of dignity in palliative care: a qualitative study

Living and dying with dignity are fundamental values in palliative care, not only for the patient but also for family members. Although dignity has been studied from the different perspectives of patients in need of palliative care and their family members, family members’ thoughts and feelings of d...

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Autores principales: Sandgren, Anna, Axelsson, Lena, Bylund‐Grenklo, Tove, Benzein, Eva
Formato: Online Artículo Texto
Lenguaje:English
Publicado: John Wiley and Sons Inc. 2020
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8451814/
https://www.ncbi.nlm.nih.gov/pubmed/33022762
http://dx.doi.org/10.1111/scs.12913
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author Sandgren, Anna
Axelsson, Lena
Bylund‐Grenklo, Tove
Benzein, Eva
author_facet Sandgren, Anna
Axelsson, Lena
Bylund‐Grenklo, Tove
Benzein, Eva
author_sort Sandgren, Anna
collection PubMed
description Living and dying with dignity are fundamental values in palliative care, not only for the patient but also for family members. Although dignity has been studied from the different perspectives of patients in need of palliative care and their family members, family members’ thoughts and feelings of dignity have not been given sufficient attention. Therefore, the aim was to describe family members’ expressions of dignity in palliative care. The study had a qualitative design; semi‐structured individual interviews were conducted with 15 family members of patients in palliative care in a county with a specialist palliative advisory team. Data were analysed using inductive content analysis. The results showed that family members’ expressions of dignity are multifaceted and complex. For family members in palliative care, dignity means living as a respected human being in relation to oneself and others. Dignity also includes being able to maintain one’s identity, feeling connected to significant others, and being comfortable with the new situation. Two contextual aspects affect family members’ dignity: the two‐headed paradox and reciprocal impact. The two‐headed paradox means that family members want to stay close to and care for the ill person, at the same time want to escape the situation, but when they escape, they want to be close again. Reciprocal impact means that family members’ feelings and experiences of the situation are closely intertwined with those of the ill person. These results may increase healthcare professionals’ understanding and be used in dignified care practices that do not threaten, but instead aim to preserve family members’ sense of dignity.
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spelling pubmed-84518142021-09-27 Family members’ expressions of dignity in palliative care: a qualitative study Sandgren, Anna Axelsson, Lena Bylund‐Grenklo, Tove Benzein, Eva Scand J Caring Sci Empirical Studies Living and dying with dignity are fundamental values in palliative care, not only for the patient but also for family members. Although dignity has been studied from the different perspectives of patients in need of palliative care and their family members, family members’ thoughts and feelings of dignity have not been given sufficient attention. Therefore, the aim was to describe family members’ expressions of dignity in palliative care. The study had a qualitative design; semi‐structured individual interviews were conducted with 15 family members of patients in palliative care in a county with a specialist palliative advisory team. Data were analysed using inductive content analysis. The results showed that family members’ expressions of dignity are multifaceted and complex. For family members in palliative care, dignity means living as a respected human being in relation to oneself and others. Dignity also includes being able to maintain one’s identity, feeling connected to significant others, and being comfortable with the new situation. Two contextual aspects affect family members’ dignity: the two‐headed paradox and reciprocal impact. The two‐headed paradox means that family members want to stay close to and care for the ill person, at the same time want to escape the situation, but when they escape, they want to be close again. Reciprocal impact means that family members’ feelings and experiences of the situation are closely intertwined with those of the ill person. These results may increase healthcare professionals’ understanding and be used in dignified care practices that do not threaten, but instead aim to preserve family members’ sense of dignity. John Wiley and Sons Inc. 2020-10-06 2021-09 /pmc/articles/PMC8451814/ /pubmed/33022762 http://dx.doi.org/10.1111/scs.12913 Text en © 2020 Nordic College of Caring Science 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 Empirical Studies
Sandgren, Anna
Axelsson, Lena
Bylund‐Grenklo, Tove
Benzein, Eva
Family members’ expressions of dignity in palliative care: a qualitative study
title Family members’ expressions of dignity in palliative care: a qualitative study
title_full Family members’ expressions of dignity in palliative care: a qualitative study
title_fullStr Family members’ expressions of dignity in palliative care: a qualitative study
title_full_unstemmed Family members’ expressions of dignity in palliative care: a qualitative study
title_short Family members’ expressions of dignity in palliative care: a qualitative study
title_sort family members’ expressions of dignity in palliative care: a qualitative study
topic Empirical Studies
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8451814/
https://www.ncbi.nlm.nih.gov/pubmed/33022762
http://dx.doi.org/10.1111/scs.12913
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