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在姑息治疗期间家庭成员参与一项干预措施后,患者在家中获得护理和支持的体验。

Patients' experiences of care and support at home after a family member's participation in an intervention during palliative care.

作者信息

Norinder Maria, Goliath Ida, Alvariza Anette

机构信息

Capio Palliative Care,Dalen Hospital,Stockholm,Sweden.

Learning, Informatics, Management and Ethics, Medical Management Center,Karolinska Institutet,Stockholm,Sweden.

出版信息

Palliat Support Care. 2017 Jun;15(3):305-312. doi: 10.1017/S1478951516000729. Epub 2016 Oct 17.

Abstract

OBJECTIVE

Patients who receive palliative home care are in need of support from family members, who take on great responsibility related to caregiving but who often feel unprepared for this task. Increasing numbers of interventions aimed at supporting family members in palliative care have been described and evaluated. It is not known whether and how these interventions actually affect the care or support provided to a patient, even though it has been suggested that family members would be likely to provide better care and support and thus allow for positive experiences for patients. However, this has not been studied from the perspective of the patients themselves. The objective of our study was to explore patients' experiences of care and support at home after family members' participation in a psychoeducational intervention during palliative care.

METHOD

Our study took a qualitative approach, and interviews were conducted with 11 patients whose family members had participated in a psychoeducational intervention during palliative home care. The interviews were analyzed employing interpretive description.

RESULTS

Patients' experiences were represented by three themes: "safe at home," "facilitated and more honest communication," and "feeling like a unit of care." Patients felt that their needs were better met and that family members became more confident at home without risking their own health. Patients felt relieved when family members were given the opportunity to talk and reflect with others and hoped that the intervention would contribute to more honest communications between themselves and their family members. Further, it was of great importance to patients that family members receive attention from and be confirmed and supported by healthcare professionals.

SIGNIFICANCE OF RESULTS

Our findings show how an intervention targeted at family members during palliative home care also benefits the patients.

摘要

目的

接受姑息性家庭护理的患者需要家庭成员的支持,家庭成员承担着与护理相关的重大责任,但他们往往觉得自己对这项任务没有做好准备。越来越多旨在支持姑息治疗中家庭成员的干预措施已被描述和评估。尽管有人认为家庭成员可能会提供更好的护理和支持,从而为患者带来积极的体验,但尚不清楚这些干预措施是否以及如何实际影响对患者提供的护理或支持。然而,尚未从患者自身的角度对此进行研究。我们研究的目的是探讨家庭成员在姑息治疗期间参与心理教育干预后,患者在家中接受护理和支持的体验。

方法

我们的研究采用定性方法,对11名家庭成员在姑息性家庭护理期间参与了心理教育干预的患者进行了访谈。采用解释性描述对访谈进行分析。

结果

患者的体验由三个主题体现:“在家中感到安全”、“沟通更顺畅、更坦诚”以及“感觉是一个护理单元”。患者感到他们的需求得到了更好的满足,家庭成员在家中变得更有信心,同时不会危及自身健康。当家庭成员有机会与他人交谈和反思时,患者感到宽慰,并希望这种干预能促进他们与家庭成员之间更坦诚的沟通。此外,对患者来说非常重要的是,家庭成员能得到医护人员的关注、认可和支持。

结果的意义

我们的研究结果表明,在姑息性家庭护理期间针对家庭成员的干预措施也使患者受益。

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