The value of home-based advance care planning in addressing existential concerns among older Norwegian patients with cancer and their relatives: A narrative ethnographic study.
Line Elida Festvåg, Beate Lie Sverre, Ørnulf Paulsen, Grethe Eilertsen
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引用次数: 0
Abstract
Background: The importance of holistic and person-centered palliative care is widely recognized, but the existential dimensions remain less focused. There is a need for more knowledge about the existential content in advance care planning (ACP) and the significance thereof in the context of home-based palliative care from the perspective of patients and their relatives.
Objective: This study aimed to explore home-based ACP as an existential conversation when conducted as a part of a palliative-care coordination meeting, and how older home-dwelling patients with advanced cancer and their relatives experience its significance.
Design: A narrative ethnographic design was employed.
Methods: The reported empirical material is based on participant observations of the home-based ACP conversations and follow-up interviews with eight patients and their relatives. The analytical approach was guided by the theoretical framework of narrative ethnography.
Results: The ACP conversations strongly supported the patients and their relatives in discussing existential concerns, such as existential fear, lived lives, and decision-making at the end of life. The significance of these conversations extended beyond the initial conversation by profoundly influencing subsequent family interactions and enhancing their ability to make informed and meaningful decisions regarding future medical treatment and care.
Conclusion: Home-based ACP can be a valuable approach for addressing the existential concerns of older patients and their relatives in the final stages of life. Home-based ACP conversations start a process that continues within the family context and affects their relational dynamics and communication patterns. This study indicates that the home environment fosters discussions about past, present, and future lives, shaping the content and outcomes of home-based ACP.
背景：整体和以人为中心的姑息治疗的重要性被广泛认可，但存在的维度仍然较少关注。从患者及其亲属的角度，需要更多地了解预先护理计划（advance care planning， ACP）中的存在内容及其在居家姑息治疗中的意义。目的：本研究旨在探讨居家ACP作为姑息治疗协调会议的一部分时的存在对话，以及老年晚期癌症居家患者及其亲属如何体验其意义。设计：采用叙述性人种学设计。方法：报告的实证材料是基于参与观察家庭ACP谈话和随访访谈的8名患者及其亲属。分析方法以叙事民族志的理论框架为指导。结果：ACP对话有力地支持了患者及其亲属讨论存在性担忧，如存在性恐惧、生活方式和临终决策。这些对话的重要性超越了最初的对话，深刻地影响了随后的家庭互动，并增强了他们就未来的医疗和护理做出知情和有意义的决定的能力。结论：以家庭为基础的ACP是解决老年患者及其亲属在生命最后阶段存在问题的一种有价值的方法。以家庭为基础的ACP对话开始了一个在家庭环境中持续的过程，并影响他们的关系动态和沟通模式。本研究表明，家庭环境促进了对过去、现在和未来生活的讨论，塑造了以家庭为基础的ACP的内容和结果。
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