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社会与结构不平等背景下的关怀与悲痛:有社会福利需求的澳大利亚护理者的经历

Caring and Grieving in the Context of Social and Structural Inequity: Experiences of Australian Carers With Social Welfare Needs.

作者信息

Bindley Kristin, Lewis Joanne, Travaglia Joanne, DiGiacomo Michelle

机构信息

Improving Palliative, Aged and Chronic Care through Clinical Research and Translation (IMPACCT), Faculty of Health, 110561The University of Technology, Ultimo, NSW, Australia.

Supportive and Palliative Care, 1760Western Sydney Local Health District, Mount Druitt NSW, Australia.

出版信息

Qual Health Res. 2022 Jan;32(1):64-79. doi: 10.1177/10497323211046875. Epub 2021 Nov 26.

Abstract

Caring for and bereavement following the death of someone with a life-limiting illness may precipitate social welfare needs related to income support and housing. Nevertheless, carer experiences of welfare policy and institutions have not received significant attention. This qualitative study explored experiences of carers who navigated social welfare policy while caring for someone with a life-limiting illness, and in bereavement. In-depth interviews were conducted with 12 bereaved carers in an area associated with socioeconomic disadvantage. Carers differentially encountered precariousness, with some experiencing structural vulnerability. These positionalities appeared to be shaped by policy and process-related burdens, perceptions of the welfare state, and degrees of legitimisation or disenfranchisement of forms of capital and coping orientations. Recommendations that may improve carer experience were identified. Implications relate to the need for an expanded conceptualisation of vulnerability in health and welfare practice, policy that authentically validates caring and grieving, and upstream strategies that address inequity.

摘要

照顾患有危及生命疾病的患者直至其去世后的丧亲之痛,可能会引发与收入支持和住房相关的社会福利需求。然而,照顾者在福利政策和机构方面的经历并未得到足够的重视。这项定性研究探讨了照顾患有危及生命疾病的患者以及处于丧亲之痛中的照顾者在应对社会福利政策方面的经历。对一个社会经济状况不利地区的12名丧亲照顾者进行了深入访谈。照顾者面临的不稳定状况各不相同,有些人经历了结构性脆弱。这些状况似乎受到与政策和流程相关的负担、对福利国家的看法,以及各种资本形式和应对方式的合法化或被剥夺公民权程度的影响。研究确定了可能改善照顾者体验的建议。其意义在于,在健康和福利实践中需要对脆弱性进行更广泛的概念化,需要有真正认可照顾和悲痛的政策,以及解决不平等问题的上游策略。

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