‘It’s not just about me’: a qualitative study of couples’ narratives about home death when one of the partners is dying of cancer

Background: Most cancer patients state a preference for home death. Care and support from primary caregivers are important to enable dying at home. A preference for home death from the perspective of couples has rarely been investigated. Objectives: To explore how a preference for home death is unde...

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Main Authors: Margareta Aurén-Møkleby, Lisbeth Thoresen, Anne Marit Mengshoel, Kari N. Solbrække, Gunvor Aasbø
Format: Article
Language:English
Published: SAGE Publishing 2023-07-01
Series:Palliative Care and Social Practice
Online Access:https://doi.org/10.1177/26323524231189517
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author Margareta Aurén-Møkleby
Lisbeth Thoresen
Anne Marit Mengshoel
Kari N. Solbrække
Gunvor Aasbø
author_facet Margareta Aurén-Møkleby
Lisbeth Thoresen
Anne Marit Mengshoel
Kari N. Solbrække
Gunvor Aasbø
author_sort Margareta Aurén-Møkleby
collection DOAJ
description Background: Most cancer patients state a preference for home death. Care and support from primary caregivers are important to enable dying at home. A preference for home death from the perspective of couples has rarely been investigated. Objectives: To explore how a preference for home death is understood and enacted in couples where one of the partners is dying of cancer. Design: A qualitative interview research design with a narrative approach was used. Methods: Five couples participated in dyad interviews. During the analysis, two interviews that particularly illuminated couples’ shared and individual views were chosen as the primary cases. Results: The interviews show, in two highly different ways, how a preference for home death is a significant relational matter. The interviews are presented as two cases: ‘Struggles in an Unknown Terrain’ and ‘Reliance at the Kitchen Table’. They show how a preference for home death can be understood and enacted as a struggle or as reliance based on the couple’s shared biography and the partner’s ability to care for the partner during the end-of-life phase. The analysis highlighted the negotiations that underpin a preference for home death. In these negotiations, the couples drew on idealised understandings of home death. These ideas were supported by cultural values related to autonomy and independence as well as participation and citizenship. Thus, in the negotiations about being cared for and caring, legitimate dependency and the maintenance of a reciprocal relationship were balanced. The presence of healthcare professionals and medical devices in the home had to be balanced with the need to maintain a sense of self and an authentic home. Conclusion: A relational perspective on a preference for home death made us attentive to couples’ negotiations. These negotiations give couples the opportunity to re-evaluate and reconfirm individual and mutual needs in the end-of-life phase.
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spelling doaj.art-30951300dc14402990920597831d2fcd2023-08-03T09:03:19ZengSAGE PublishingPalliative Care and Social Practice2632-35242023-07-011710.1177/26323524231189517‘It’s not just about me’: a qualitative study of couples’ narratives about home death when one of the partners is dying of cancerMargareta Aurén-MøklebyLisbeth ThoresenAnne Marit MengshoelKari N. SolbrækkeGunvor AasbøBackground: Most cancer patients state a preference for home death. Care and support from primary caregivers are important to enable dying at home. A preference for home death from the perspective of couples has rarely been investigated. Objectives: To explore how a preference for home death is understood and enacted in couples where one of the partners is dying of cancer. Design: A qualitative interview research design with a narrative approach was used. Methods: Five couples participated in dyad interviews. During the analysis, two interviews that particularly illuminated couples’ shared and individual views were chosen as the primary cases. Results: The interviews show, in two highly different ways, how a preference for home death is a significant relational matter. The interviews are presented as two cases: ‘Struggles in an Unknown Terrain’ and ‘Reliance at the Kitchen Table’. They show how a preference for home death can be understood and enacted as a struggle or as reliance based on the couple’s shared biography and the partner’s ability to care for the partner during the end-of-life phase. The analysis highlighted the negotiations that underpin a preference for home death. In these negotiations, the couples drew on idealised understandings of home death. These ideas were supported by cultural values related to autonomy and independence as well as participation and citizenship. Thus, in the negotiations about being cared for and caring, legitimate dependency and the maintenance of a reciprocal relationship were balanced. The presence of healthcare professionals and medical devices in the home had to be balanced with the need to maintain a sense of self and an authentic home. Conclusion: A relational perspective on a preference for home death made us attentive to couples’ negotiations. These negotiations give couples the opportunity to re-evaluate and reconfirm individual and mutual needs in the end-of-life phase.https://doi.org/10.1177/26323524231189517
spellingShingle Margareta Aurén-Møkleby
Lisbeth Thoresen
Anne Marit Mengshoel
Kari N. Solbrække
Gunvor Aasbø
‘It’s not just about me’: a qualitative study of couples’ narratives about home death when one of the partners is dying of cancer
Palliative Care and Social Practice
title ‘It’s not just about me’: a qualitative study of couples’ narratives about home death when one of the partners is dying of cancer
title_full ‘It’s not just about me’: a qualitative study of couples’ narratives about home death when one of the partners is dying of cancer
title_fullStr ‘It’s not just about me’: a qualitative study of couples’ narratives about home death when one of the partners is dying of cancer
title_full_unstemmed ‘It’s not just about me’: a qualitative study of couples’ narratives about home death when one of the partners is dying of cancer
title_short ‘It’s not just about me’: a qualitative study of couples’ narratives about home death when one of the partners is dying of cancer
title_sort it s not just about me a qualitative study of couples narratives about home death when one of the partners is dying of cancer
url https://doi.org/10.1177/26323524231189517
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