Department of Sociology and Social Policy, The University of Sydney, Australia.
Soc Sci Med. 2019 Oct;239:112554. doi: 10.1016/j.socscimed.2019.112554. Epub 2019 Sep 14.
Informal caring at the end of life is often a fraught experience that extends well beyond the death of the person receiving care. However, analyses of informal carers' experiences are frequently demarcated relative to death, for example in relation to anticipatory grief (pre-death) or grief in bereavement (post-death). In contrast to this tendency to epistemologically split pre- and post-death experiences, we analyse informal caring across two separate qualitative interviews with 15 informal carers in one metropolitan city in Australia-one before and one after the death of the person for whom they cared. In doing so, we focus on accounts of care across dying and bereavement including: the evolving ambivalence of carers' social relations at the end of life and beyond; dying and death as a challenge to the ideal of authenticity; and, the potential for misrecognition and social estrangement in caring relations at the end of life. We draw on social theory addressing the themes of ambivalence, authenticity and recognition to enhance our understanding of caring as a social practice that occurs across dying and bereavement, rather than as structured primarily by the context of one or the other.
非专业护理人员在临终关怀时的体验往往是复杂的,其影响范围远远超出了接受护理的人的死亡。然而,对非专业护理人员的经验分析往往是相对于死亡来进行的,例如,在预期性悲伤(死亡前)或丧亲之痛(死亡后)方面。与这种将死亡前后的经验在认识论上割裂的趋势相反,我们在澳大利亚一个大都市的 15 名非专业护理人员中进行了两次单独的定性访谈,一次是在他们所照顾的人去世之前,一次是在去世之后。在这样做的过程中,我们关注的是护理人员在临终关怀和丧亲期间的护理体验,包括:临终关怀和丧亲期间护理人员社会关系的不断变化的矛盾心理;死亡对真实性理想的挑战;以及在临终关怀关系中潜在的误解和社会疏远。我们借鉴了探讨矛盾心理、真实性和认可等主题的社会理论,以增强我们对护理作为一种跨越临终关怀和丧亲之痛的社会实践的理解,而不是主要由一个或另一个环境来构建。