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大流行时期的慢性病与护理问题:新西兰奥特亚罗瓦女性的经历

Chronic Illness and Matters of Care in Pandemic Times: The Experiences of Women in Aotearoa New Zealand.

作者信息

Thorpe Holly, O'Leary Grace

机构信息

Te Huataki Waiora Division of Health, University of Waikato, Hamilton, New Zealand.

出版信息

Sociol Health Illn. 2025 Jun;47(5):e70057. doi: 10.1111/1467-9566.70057.

Abstract

For many living with chronic illness, COVID-19 is a compounding health crisis. Although a few studies have focused on the experiences of those living with chronic illness, this is the first to prioritise the voices of women living with chronic illnesses during the pandemic. Engaging Puig de la Bellacasa's (2017) writings on 'matters of care', this paper draws upon interviews with 13 women living with (their own or others) chronic illness to reveal multi-spatial and temporal understandings of care, from self-care to the everyday acts of care by family, friends and strangers, to changing understandings of care alongside shifting governmental policies. In so doing, this paper highlights the varied ways women living with chronic illness made meaning of risk and vulnerability during the various stages of the pandemic, and how the pandemic shifted material, embodied and affective ways of knowing care. It also reveals the women's experiences of care as powerfully shaped by intersecting systems of oppression, marginalisation and discrimination. Underpinned by a feminist ethic of care, this paper amplifies the lived experiences of chronically ill women, reconsiders what we might have (un)learnt about care during the pandemic and calls for care-based approaches as a way forward for future crises.

摘要

对于许多慢性病患者来说,新冠疫情是一场雪上加霜的健康危机。尽管有一些研究关注慢性病患者的经历,但这是第一项将大流行期间慢性病女性的声音作为重点的研究。本文借鉴了普伊格·德拉·贝利亚卡萨(2017年)关于“护理问题”的著作,通过对13名患有(自身或他人)慢性病的女性进行访谈,揭示了对护理的多空间和多时间维度的理解,从自我护理到家人、朋友和陌生人的日常护理行为,再到随着政府政策变化而改变的护理观念。通过这样做,本文强调了慢性病女性在疫情不同阶段对风险和脆弱性赋予意义的各种方式,以及疫情如何改变了物质、身体和情感层面的护理认知方式。它还揭示了女性的护理经历受到压迫、边缘化和歧视等相互交织的系统的强烈影响。在女性主义关怀伦理的支撑下,本文放大了慢性病女性的生活经历,重新思考我们在疫情期间可能(未)学到的关于护理的知识,并呼吁以关怀为基础的方法作为应对未来危机的前进方向。

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本文引用的文献

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Affect, dis/ability and the pandemic.情感、残疾与大流行。
Sociol Health Illn. 2023 Jul;45(6):1187-1204. doi: 10.1111/1467-9566.13483. Epub 2022 Jun 2.
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Parenting a child with a chronic illness during a pandemic.在大流行期间养育患有慢性病的孩子。
J Pediatr Nurs. 2022 Sep-Oct;66:64-69. doi: 10.1016/j.pedn.2022.05.009. Epub 2022 May 28.

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