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“我妻子是我在家中的医生”:一项质性研究,探讨资源匮乏地区居家姑息治疗的挑战

'My wife is my doctor at home': A qualitative study exploring the challenges of home-based palliative care in a resource-poor setting.

作者信息

Salifu Yakubu, Almack Kathryn, Caswell Glenys

机构信息

International Observatory on End of Life Care, Division of Health Research, Faculty of Health and Medicine, Lancaster University, Lancaster, Lancashire, UK.

Communities, Young People and Family Lives, Centre for Research in Public Health and Community Care, School of Health and Social Work, University of Hertfordshire, Hatfield, Hertfordshire, UK.

出版信息

Palliat Med. 2021 Jan;35(1):97-108. doi: 10.1177/0269216320951107. Epub 2020 Sep 18.

Abstract

BACKGROUND

Family caregiving is common globally, but when a family member needs palliative and end-of-life care, this requires knowledge and expertise in dealing with symptoms, medication, and treatment side effects. Caring for a family member with advanced prostate cancer in the home presents practical and emotional challenges, especially in resource-poor contexts, where there are increasing palliative cases without adequate palliative care institutions.

AIM

The study explored palliative and end-of-life care experiences of family caregivers and patients living at home in a resource-poor context in Ghana.

DESIGN

This is a qualitative study using thematic analysis of face-to-face interviews at two-time points.

PARTICIPANTS

Men living with advanced prostate cancer ( = 23), family caregivers ( = 23), healthcare professionals ( = 12).

FINDINGS

Men with advanced prostate cancer face complex issues, including lack of access to professional care and a lack of resources for homecare. Family caregivers do not have easy access to professional support; they often have limited knowledge of disease progression. Patients have inadequate access to medication and other practical resources for homecare. Caregivers may be overburdened and perform the role of the patient's 'doctor' at home-assessing patient's symptoms, administering drugs, and providing hands-on care.

CONCLUSION

Home-based care is promoted as an ideal and cost-effective model of care, particularly in Westernised palliative care models. However, in resource-poor contexts, there are significant challenges associated with the implementation of this model. This study revealed the scale of challenges family caregivers, who lack basic training on aspects of caring, face in providing home care unsupported by healthcare professionals.

摘要

背景

家庭照护在全球都很常见,但当家庭成员需要姑息治疗和临终关怀时,这就需要应对症状、药物和治疗副作用方面的知识和专业技能。在家中照顾晚期前列腺癌患者会带来实际和情感上的挑战,尤其是在资源匮乏的环境中,那里的姑息治疗病例不断增加,但却没有足够的姑息治疗机构。

目的

该研究探讨了加纳资源匮乏环境下家庭照护者和居家患者的姑息治疗和临终关怀经历。

设计

这是一项定性研究,采用对两个时间点的面对面访谈进行主题分析。

参与者

晚期前列腺癌男性患者(n = 23)、家庭照护者(n = 23)、医疗保健专业人员(n = 12)。

研究结果

晚期前列腺癌男性患者面临复杂问题,包括难以获得专业护理以及缺乏家庭护理资源。家庭照护者难以获得专业支持;他们通常对疾病进展的了解有限。患者难以获得药物和其他家庭护理实际资源。照护者可能负担过重,在家中扮演患者“医生”的角色——评估患者症状、给药并提供实际护理。

结论

居家护理被推崇为一种理想且具有成本效益的护理模式,尤其是在西方化的姑息治疗模式中。然而,在资源匮乏的环境中,实施这种模式存在重大挑战。本研究揭示了缺乏护理方面基本培训的家庭照护者在没有医疗保健专业人员支持的情况下提供家庭护理时所面临的挑战规模。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/2707/7797613/dd26165546c9/10.1177_0269216320951107-fig1.jpg

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