获得诊断和治疗:与医疗系统周旋的癌症经历

IF 1.8 Q3 PUBLIC, ENVIRONMENTAL & OCCUPATIONAL HEALTH SSM. Qualitative research in health Pub Date : 2024-03-20 DOI:10.1016/j.ssmqr.2024.100418
Kevin Dew , Kerry Chamberlain , Richard Egan , Alex Broom , Elizabeth Dennett , Chris Cunningham
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引用次数: 0

摘要

癌症的长期存活越来越普遍,其后果引起了社会学和临床的关注。在本文中,我们使用了 "挣扎"(wrangling)这一概念,以强调幸存者的日常挣扎,以及在可能并不受欢迎的环境中寻找出路的过程。从 2020 年到 2022 年,我们对新西兰奥特亚罗瓦各地的毛利人和非毛利人进行了 81 次访谈,这些人被认定为特殊的癌症幸存者,在确诊癌症后生活了 4 到 37 年。与会者讨论的争执类别包括与新西兰奥特亚罗瓦公共药品采购机构的争执、私营和公共医疗系统之间的争执、次等争执和跨地区争执。争论可以由癌症患者本人推动,也可以由包括家人和医疗专业人员在内的其他人代表患者进行,还可以由社区进行。我们认为,对于大多数长期癌症生存者来说,"拗 "是一种社会实践,但成功 "拗 "的能力取决于一系列因素,包括经济、文化和社会资本水平。与幸存者文献中过分强调癌症是一种个人经历的观点形成鲜明对比的是,"挣扎 "这一概念在很大程度上与管理(通常是臃肿和有缺陷的)护理系统的艺术和实践脱节。
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Accessing diagnosis and treatment: The experience of cancer as wrangling with the system

Long term cancer survival is increasingly prevalent, and the consequences are of sociological and clinical interest. In this paper we deploy the concept of wrangling to emphasise the everyday tussle of survivorship and processes of navigating pathways through what can be an unwelcoming environment. From 2020 to 2022 81 interviews were conducted with people, Māori and non-Māori, throughout Aotearoa New Zealand identified as exceptional cancer survivors, living with a diagnosis of cancer from four to 37 years. Categories of wrangling discussed by participants included wrangling with the public drug-buying agency in Aotearoa New Zealand, wrangling between private and public healthcare systems, subaltern wrangling and wrangling across regions. Wrangling could be driven by the person with the cancer diagnosis, undertaken on behalf of that person by others including family and health professionals, and undertaken by the community. We argue that for most people with long-term cancer survival wrangling is a social practice, but the capacity to succeed in that practice is dependent on a range of factors, including levels of economic, cultural, and social capital. The concept of wrangling provides a contrast to an overemphasis in the survivorship literature on cancer as an individual experience; one largely disconnected from the art and practice of managing (often unwieldy and flawed) systems of care.

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163 days
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