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“你得到了什么?什么都没有”:对德国在家中照顾临终亲属的家庭护理经济影响的定性分析。

"What Do You Get? Nothing": A Qualitative Analysis of the Financial Impact of Family Caregiving for a Dying Relative at Home in Germany.

作者信息

Pieper Sally, Kasdorf Alina, Voltz Raymond, Strupp Julia

机构信息

Department of Palliative Medicine, Faculty of Medicine and University Hospital, University of Cologne, Kerpener Str. 62, 50937 Cologne, Germany.

Center for Integrated Oncology Aachen Bonn Cologne Duesseldorf (CIO ABCD), Faculty of Medicine and University Hospital, University of Cologne, Eupener Str. 129, 50933 Cologne, Germany.

出版信息

Healthcare (Basel). 2025 Apr 3;13(7):810. doi: 10.3390/healthcare13070810.

Abstract

: As a result of demographic change in Germany, the number of people in need of care is steadily increasing, with a correspondingly larger proportion of care being provided by family members at home. Family caregivers face significant challenges in providing such care, particularly when balancing work responsibilities. Many experience a loss of income due to reduced working hours or the necessity of leaving the labor market. Additional caregiving costs, such as medical expenses, transportation, and home modifications, further exacerbate their financial burden. : This study consists of an online survey, which included the German version of the Carer Support Needs Assessment Tool (CSNAT), designed to assess the support needs of family caregivers. Respondents were asked to describe their support needs in open-text responses. To illustrate their experiences, a qualitative content analysis was conducted. : Out of the 320 questionnaires, 304 of them contained open-text responses that could be analyzed. Important themes included the need for support in the workplace, financial security, and assistance with administrative barriers. In addition to more flexible working hours and greater understanding from employers, the need for financial compensation for loss of working time was expressed. : Despite a growing awareness of the gaps in support, the needs of family caregivers remain inadequately addressed, leaving them financially burdened and unsupported. Ultimately, this study calls for a re-evaluation of societal attitudes toward caring, arguing for greater recognition of the economic contributions of family caregivers and the implementation of supportive policies.

摘要

由于德国的人口结构变化,需要照顾的人数在稳步增加,相应地,在家中由家庭成员提供照顾的比例也更大。家庭照顾者在提供此类照顾时面临重大挑战,尤其是在平衡工作职责时。许多人因工作时间减少或必须离开劳动力市场而收入减少。额外的照顾成本,如医疗费用、交通费用和家庭改造费用,进一步加重了他们的经济负担。

本研究包括一项在线调查,其中包括德语版的照顾者支持需求评估工具(CSNAT),旨在评估家庭照顾者的支持需求。受访者被要求用开放式文本回答来描述他们的支持需求。为了说明他们的经历,进行了定性内容分析。

在320份问卷中,有304份包含可分析的开放式文本回答。重要主题包括在工作场所获得支持的需求、财务安全以及行政障碍方面的援助。除了更灵活的工作时间和雇主更多的理解外,还表达了对工作时间损失给予经济补偿的需求。

尽管人们越来越意识到支持方面的差距,但家庭照顾者的需求仍未得到充分满足,使他们在经济上负担沉重且得不到支持。最终,本研究呼吁重新评估社会对照顾的态度,主张更多地认可家庭照顾者的经济贡献并实施支持性政策。

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