“这不仅仅关乎我自己”：一项关于伴侣一方因癌症临终时夫妻对家中死亡叙述的定性研究
'It's not just about me': a qualitative study of couples' narratives about home death when one of the partners is dying of cancer.
作者信息
Aurén-Møkleby Margareta, Thoresen Lisbeth, Mengshoel Anne Marit, Solbrække Kari N, Aasbø Gunvor
机构信息
Institute of Health and Society, University of Oslo, Postboks 1089 Blindern, 0317 Oslo, Norway.
Institute of Health and Society, University of Oslo, Oslo, Norway.
出版信息
Palliat Care Soc Pract. 2023 Aug 2;17:26323524231189517. doi: 10.1177/26323524231189517. eCollection 2023.
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.
背景
大多数癌症患者表示倾向于在家中离世。初级护理人员的照顾和支持对于实现在家离世至关重要。从夫妻双方的角度对在家离世偏好的研究很少。
目的
探讨在一方配偶因癌症临终的夫妻中，如何理解和践行在家离世的偏好。
设计
采用定性访谈研究设计和叙事方法。
方法
五对夫妻参与了双人访谈。在分析过程中，选择了两场特别能阐明夫妻共同观点和个人观点的访谈作为主要案例。
结果
访谈以两种截然不同的方式表明，在家离世的偏好如何成为一个重要的关系问题。访谈呈现为两个案例：“未知领域的挣扎”和“餐桌旁的依赖”。它们展示了基于夫妻共同经历以及伴侣在临终阶段照顾对方的能力，在家离世的偏好如何被理解和践行，表现为挣扎或依赖。分析突出了支撑在家离世偏好的协商过程。在这些协商中，夫妻借鉴了对在家离世的理想化理解。这些观念得到了与自主、独立以及参与和公民身份相关的文化价值观的支持。因此，在关于被照顾和照顾他人的协商中，合理的依赖与维持相互关系达到了平衡。家中医疗保健专业人员和医疗设备的存在必须与保持自我意识和真实家庭感的需求相平衡。
结论
从关系角度看待在家离世的偏好使我们关注夫妻间的协商。这些协商让夫妻有机会在临终阶段重新评估和确认个人及相互需求。
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