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探索姑息家庭护理中的可理解性和可管理性:一项对临终癌症患者非正式护理者的访谈研究

Exploring comprehensibility and manageability in palliative home care: an interview study of dying cancer patients' informal carers.

作者信息

Milberg Anna, Strang Peter

机构信息

Faculty of Health Sciences, Palliative Research Unit and Division of Geriatrics, Linköping University, SE-581 85 Linköping, Sweden.

出版信息

Psychooncology. 2004 Sep;13(9):605-18. doi: 10.1002/pon.774.

Abstract

The presence of an informal carer is often a prerequisite for successful palliative home care, and the staff's ability to support informal carers' coping in such situations is important. Recent research has revealed that it is possible to achieve positive psychological states in palliative care despite the burdening situation. As there is a lack of theory-based coping studies, the aim of this study was to describe, within the context of palliative home care, two concepts in Antonovsky's theory of Sense of Coherence: comprehensibility (a perception that the challenge is understood) and manageability (a perception that the resources to cope are available). Tape-recorded semi-structured interviews with 19 informal carers during ongoing palliative home care were transcribed and analysed with a qualitative hermeneutic approach. Elements that facilitated comprehensibility included open information, symbolic information, basic life assumptions and previous knowledge. These were important for creating a congruent inner reality (as opposed to chaos). Resources contributing to manageability dealt with power, support, competence and accessibility, which on a more abstract level resulted in a feeling of togetherness (as opposed to isolation). The findings are discussed in relation to the complexity of communication between staff and carers within palliative care.

摘要

非正式照料者的存在往往是姑息性家庭护理取得成功的先决条件,而工作人员在这种情况下支持非正式照料者应对的能力很重要。最近的研究表明,尽管处于负担沉重的状况,但在姑息治疗中仍有可能实现积极的心理状态。由于缺乏基于理论的应对研究,本研究的目的是在姑息性家庭护理的背景下,描述安东诺夫斯基的连贯感理论中的两个概念:可理解性(认为挑战是可理解的认知)和可管理性(认为有应对资源可用的认知)。对19名正在接受姑息性家庭护理的非正式照料者进行了录音半结构化访谈,并采用定性诠释学方法进行转录和分析。促进可理解性的要素包括公开信息、象征性信息、基本生活假设和先前知识。这些对于创造一个一致的内在现实(与混乱相对)很重要。有助于可管理性的资源涉及权力、支持、能力和可及性,从更抽象的层面来看,这些会产生一种团聚感(与孤立相对)。研究结果结合了姑息治疗中工作人员与照料者之间沟通的复杂性进行了讨论。

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