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Chronicity and the patient’s decision-making work. The case of an advanced cancer patient 慢性与患者的决策工作。一个晚期癌症患者的病例
IF 1.8 4区 社会学 Q2 ANTHROPOLOGY Pub Date : 2022-01-02 DOI: 10.1080/13648470.2022.2041546
S. Besle, A. Sarradon-Eck
Abstract This paper focuses on the particular situation of an advanced cancer patient whose condition has taken a chronic turn. We argue that chronicity of this kind sometimes falls at the frontier of Evidence Based Medicine because the uncertainty about the patient’s condition can lead physicians to resort to clinical trials or non-licensed drugs to prevent the disease from progressing. This situation leaves plenty of scope for individual adjustments between patients and their doctors. Advanced cancer is regarded here not just as a biological event but as a chronic illness and a ‘negotiated reality’. We argue that the chronicity of advanced cancer patients’ situation broadens the patients’ scope for ‘work’, and we have called this specific type of patient’s work ‘decision-making work’. This paper is based on a case study focusing on Patrick, a middle-aged Frenchman with metastatic lung cancer who underwent oncological treatment for seven years and was strongly determined to find new therapeutic options even if this meant having to go abroad. He actively orchestrated his therapeutic itinerary by reorganising his relationships with the medical world and coordinating the physicians’ work. His particular social position enabled Patrick to bypass some of the current medical rules and to reorganise the usual pattern of distribution of medical responsibilities. The chronicity of his condition placed him at the very frontier of the health care system.
摘要本文主要介绍一位晚期癌症患者的特殊情况,他的病情已经发生了慢性转变。我们认为,这种慢性病有时属于循证医学的前沿,因为对患者病情的不确定性可能导致医生求助于临床试验或未经许可的药物来预防疾病的进展。这种情况给病人和医生之间的个人调整留下了很大的空间。晚期癌症不仅被视为一种生物事件,而且被视为一种慢性疾病和“协商现实”。我们认为,晚期癌症患者的慢性状况扩大了患者的“工作”范围,我们将这种特定类型的患者工作称为“决策工作”。本文基于Patrick的案例研究,Patrick是一名患有转移性肺癌的中年法国人,他接受了七年的肿瘤治疗,并坚定地决定寻找新的治疗方案,即使这意味着必须出国。他通过重组他与医学界的关系和协调医生的工作,积极地安排他的治疗行程。他特殊的社会地位使帕特里克能够绕过一些现行的医疗规则,重新组织医疗责任分配的通常模式。他的慢性疾病使他处于医疗保健系统的前沿。
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引用次数: 1
The nebula of chronicity: dealing with metastatic breast cancer in the UK 慢性星云:处理转移性乳腺癌在英国
IF 1.8 4区 社会学 Q2 ANTHROPOLOGY Pub Date : 2022-01-02 DOI: 10.1080/13648470.2022.2041547
Cinzia Greco
Abstract In this article, I explore how the concept of chronicity is mobilised by different actors in reference to metastatic breast cancer (MBC) and the transformation of the condition as a consequence of medical innovations. I do so by using data collected in the UK between 2017 and 2019 through in-depth interviews with medical professionals involved in the treatment of MBC and with patients living with MBC. I show how chronicity appears as a multidimensional and uncertain concept, which I analyse through the image of the nebula. While the medical literature tends to consider MBC chronic or on route to chronicisation, the medical professionals interviewed were uncertain as to whether MBC can be considered a chronic disease, and attempted to discuss chronicity through survival times, the kind of management possible for the disease, and how it compares to other conditions more commonly considered chronic. In some cases, the patients considered the idea of chronicity a source of hope or a way to link their condition to those of people with other diseases; however, they generally rejected the definition as inappropriate for their experience of the illness. Analysing the fluid uses of the concept of chronicity in the case of MBC contributes to the debate within medical anthropology on how medical categories acquire different values and uses and on the circulation of meanings between the biomedical context and the patient experience.
在这篇文章中,我探讨了慢性的概念是如何被不同的参与者动员,参考转移性乳腺癌(MBC)和条件的转变作为医学创新的结果。为此,我使用了2017年至2019年在英国收集的数据,这些数据是通过对参与MBC治疗的医疗专业人员和MBC患者的深入访谈收集的。我展示了慢性是如何作为一个多维度和不确定的概念出现的,我通过星云的图像分析了这一点。虽然医学文献倾向于认为MBC是慢性疾病或正在走向慢性疾病,但接受采访的医疗专业人员不确定MBC是否可以被视为慢性疾病,并试图通过生存时间、疾病可能的管理方式以及与其他通常被认为是慢性的疾病相比如何讨论慢性疾病。在某些情况下,患者认为慢性病是希望的源泉,或者是将他们的病情与患有其他疾病的人的病情联系起来的一种方式;然而,他们普遍拒绝这个定义,认为这与他们的疾病经历不合适。在MBC案例中分析慢性病概念的流动用途有助于医学人类学内部关于医疗类别如何获得不同价值和用途以及生物医学背景和患者经验之间意义循环的辩论。
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引用次数: 2
The friend within? The implantable cardioverter defibrillator between saving lives and chronically impairing them 内心的朋友?植入式心律转复除颤器在挽救生命和长期损害生命之间
IF 1.8 4区 社会学 Q2 ANTHROPOLOGY Pub Date : 2022-01-02 DOI: 10.1080/13648470.2022.2041548
F. Barlocco
Abstract This article considers the way in which a medical technology, the implantable cardioverter defibrillator (ICD), by preventing fatal outcomes, in this case sudden death, deriving from cardiac diseases, and specifically hypertrophic cardiomyopathy, contributes to the development of a particular type of chronicity. While biomedicine celebrates technological advances in treatments and naturalises chronicity, focussing on life expectancy as a victory over the ‘acute’ aspects of the disease, the way in which patients live with the disease is left unquestioned. The article follows Smith-Morris’s (2010) perspective in seeing chronicity as the never-ending process of identifying with one’s disease, adding a focus on the role played by an embodied technology in relation to it. Based on participant observation in a clinical setting and interviews with clinicians, the article interrogates three key themes in the chronicity of cardiac patients implanted with an ICD: risk, quality of life and choice. The data shows a constant tension between managing a one-off potentially fatal ‘acute’ risk and life with serious disruptions due to the limitations imposed by the implanted device. The article argues that patients’ resources for facing the life and identity disrupted by the disease are limited by ideas of what living a diseased body is, which acritically follow discourses of ‘patient choice’ and a ‘technological imperative’ to avoid risk.
摘要:本文考虑了一种医疗技术,即植入式心律转复除颤器(ICD),通过预防致命的结果,在这种情况下猝死,源自心脏疾病,特别是肥厚性心肌病,有助于发展特定类型的慢性。虽然生物医学庆祝治疗方面的技术进步,并将慢性病归化,把重点放在预期寿命上,认为这是对这种疾病“急性”方面的胜利,但患者的生活方式却没有受到质疑。这篇文章遵循了Smith-Morris(2010)的观点,将慢性病视为一个人对疾病永无止境的认同过程,并将重点放在了与疾病相关的具体化技术所起的作用上。基于临床环境中的参与者观察和与临床医生的访谈,本文探讨了植入ICD的心脏病患者慢性性的三个关键主题:风险、生活质量和选择。数据显示,由于植入设备的限制,管理一次性潜在致命的“急性”风险和生命严重中断之间存在持续的紧张关系。这篇文章认为,病人面对被疾病打乱的生活和身份的资源,受到了关于如何活在一个患病的身体上的观念的限制,这些观念尖锐地遵循了“病人选择”和避免风险的“技术要求”的话语。
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引用次数: 0
The movement for global mental health: critical views from South and Southeast Asia 全球精神卫生运动:来自南亚和东南亚的批评观点
IF 1.8 4区 社会学 Q2 ANTHROPOLOGY Pub Date : 2021-12-02 DOI: 10.1080/13648470.2021.2007755
Arnav Sethi
Critiques of psychiatric knowledge and practise have raised several concerns relating to: identification of diagnostic criteria, classification of distinct clinical entities, holistic understandings of causation, ‘legitimate’ treatment modalities, and claims to a universal symptomatology and nosology. This timely volume contributes to these longstanding debates and reminds us about all that is at stake if ‘mainstream’ psychiatric treatment and services are ‘universalised’, or perhaps more appropriately, ‘globalised’. As the contributors, including anthropologists, sociologists, public health professionals, historians, and clinical psychiatrists point out, this is indeed the primary aim of the Movement for Global Mental Health (MGMH). The book is divided into four broad themes: Critical Histories, Limits of Global Mental Health, Alternatives and Afterwords. The conceptually rich introduction covers good ground as it defamiliarises taken for granted assumptions about mental disorders that the MGMH tends to accept uncritically. Each chapter addresses certain problematic assumptions about causation, treatment and pervasiveness of mental disorders.
对精神病学知识和实践的批评提出了以下几个问题:诊断标准的确定,不同临床实体的分类,对因果关系的整体理解,“合法”的治疗方式,以及对普遍症状学和分类学的主张。这本及时的书对这些长期的争论做出了贡献,并提醒我们,如果“主流”精神病学治疗和服务“普遍化”,或者更恰当地说,“全球化”,那么一切都将岌岌可危。正如包括人类学家、社会学家、公共卫生专业人员、历史学家和临床精神病学家在内的贡献者所指出的那样,这确实是全球精神卫生运动(MGMH)的主要目标。这本书分为四个广泛的主题:关键的历史,全球心理健康的限制,选择和后记。概念丰富的介绍涵盖了良好的基础,因为它对MGMH倾向于不加批判地接受的关于精神障碍的想当然假设进行了陌生。每一章都阐述了关于精神障碍的因果关系、治疗和普遍性的某些有问题的假设。
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引用次数: 4
Six hours to study: temporality and ignorance in medical education. 六小时学习:医学教育的暂时性和无知。
IF 1.8 4区 社会学 Q2 ANTHROPOLOGY Pub Date : 2021-12-01 Epub Date: 2021-07-12 DOI: 10.1080/13648470.2021.1890943
Julia Knopes

Individual scientists, clinicians, and other experts cannot have absolute knowledge of all of the theories, methods, models, and findings in their field of practice. Rather, these individuals make choices about the kind of information that will be most meaningful and impactful in their work, while choosing - or being compelled to choose - what knowledge to overlook or ignore: a process identified as sufficient knowledge. In biomedicine, medical students are socialized to deliberately decide what information matters most; so, too, do practicing physicians openly acknowledge that they make choices around knowledge in daily practice. Within this process, time is a critical factor that mediates epistemological decision-making. In other words, how does time bound or restrict what forms and depth of medical knowledge that physicians and future physicians prioritize? When would someone intentionally limit time in order to constrain the amount and types of information he, she, or they acquire? To answer these questions, this study draws upon interviews and participant observation conducted with students at a medical school in the American Midwest. This article seeks to answer the aforementioned questions and to provide a new framework for, and expand discussions of, agnotology in the anthropology of medicine.

个别科学家、临床医生和其他专家不可能对其实践领域的所有理论、方法、模型和发现都有绝对的了解。更确切地说,这些人选择对他们的工作最有意义和影响的信息,同时选择-或被迫选择-忽略或忽略哪些知识:一个被确定为充分知识的过程。在生物医学领域,医学生被社会化了,他们会有意识地决定哪些信息最重要;因此,执业医生也公开承认,他们在日常实践中会根据知识做出选择。在这一过程中,时间是调节认识论决策的关键因素。换句话说,时间是如何限制医生和未来医生优先考虑的医学知识的形式和深度的?什么时候某人会故意限制时间来限制他、她或他们获得的信息的数量和类型?为了回答这些问题,本研究对美国中西部一所医学院的学生进行了访谈和参与观察。本文试图回答上述问题,并为医学人类学中的不可知论提供一个新的框架,并扩大对其的讨论。
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引用次数: 1
The emergence of new medical pluralism: the case study of Estonian medical doctor and spiritual teacher Luule Viilma. 新医疗多元化的出现:爱沙尼亚医生和精神导师Luule Viilma的个案研究。
IF 1.8 4区 社会学 Q2 ANTHROPOLOGY Pub Date : 2021-12-01 Epub Date: 2020-08-28 DOI: 10.1080/13648470.2020.1785843
Marko Uibu

Rather than the harmonious coexistence of different therapeutic practices and meaning systems, medical pluralism involves the contestation of norms and meanings related to legitimacy and authority. The implicit cultural norms that shape local understandings of health and legitimate healing methods become more during periods of social and cultural change. This paper demonstrates the contested nature of medical pluralism based on the case study of one significant figure, Estonian gynaecologist and spiritual teacher Luule Viilma. Well-known to the public as a trailblazer and prominent spokesperson for medical pluralism since the 1990s, Viilma's trajectory from doctor to healer reveals some implicit characteristics and mechanisms of power struggles as evidenced by the 'boundary work' carried out by biomedical specialists. By uniting and bridging biomedicine and spiritual self-help, Viilma became a figure whose presence and teachings gave responsibility and power to individuals and helped to legitimize pluralism in health practices. She had the ambition to redefine, in a fundamental way, perceived norms of legitimacy and authority, as well as the patient's position. From interviews with people who have used Viilma's teachings and material from internet discussion forums, it is apparent that the emergence of new forms of medical pluralism has brought several changes in health-related norms and understandings, including more active personal involvement in health-related information seeking and decision-making.

医学多元化不是不同治疗实践和意义体系的和谐共存,而是涉及与合法性和权威相关的规范和意义的争论。在社会和文化变革时期,影响当地对健康和合法治疗方法理解的隐性文化规范变得更加重要。本文展示了基于一个重要人物,爱沙尼亚妇科医生和精神导师Luule Viilma的案例研究的医疗多元化的争议性质。自20世纪90年代以来,作为医学多元化的开拓者和杰出代言人,Viilma从医生到治疗者的轨迹揭示了一些隐含的权力斗争特征和机制,这可以从生物医学专家开展的“边界工作”中得到证明。通过将生物医学和精神自助结合起来,Viilma成为了一个人物,他的存在和教导赋予了个人责任和力量,并帮助使卫生实践中的多元化合法化。她有野心从根本上重新定义人们对合法性和权威的认知规范,以及病人的地位。从对使用过Viilma教学和互联网论坛材料的人的采访来看,很明显,新形式的医疗多元化的出现带来了与健康有关的规范和理解的一些变化,包括更积极地个人参与与健康有关的信息寻求和决策。
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引用次数: 4
Peer support workers' conceptions of drug users and the implications for service provision. 同伴支持工作者对吸毒者的概念及其对服务提供的影响。
IF 1.8 4区 社会学 Q2 ANTHROPOLOGY Pub Date : 2021-12-01 Epub Date: 2021-03-03 DOI: 10.1080/13648470.2021.1875317
Jane Anderson

This paper explores how independently organised peer support workers conceptualise drug users to determine how they deliver their service. The work is undergirded by Spiro's critique of the social view that conceptions of the human are fixed, and his contention that sometimes the concept of the self is set aside for utilitarian purposes. A literature review indicates that different conceptions of the drug user as the 'psychological self' and the 'social self' are variously held by public health, peer support workers employed by public health and independent peer support workers. An ethnographic account thereafter investigates how independently organised peer support workers prioritise three conceptions of the 'social self': drug users are hurt by social exclusion; they can benefit from shared experience; they can achieve social inclusion with peer support. The paper concludes with a discussion on the implications of using social conceptions of drug users in the provision of service and signals considerable scope for investigating how independent organisations of peer support workers attend drug users seeking recovery.

本文探讨了独立组织的同伴支持工作者如何将吸毒者概念化,以确定他们如何提供服务。这部作品的基础是斯皮罗对社会观点的批判,即人类的概念是固定的,他的论点是,有时自我的概念被功利主义目的搁置一边。一项文献综述表明,公共卫生、公共卫生雇用的同伴支持工作者和独立的同伴支持工作者对吸毒者的“心理自我”和“社会自我”的不同概念各不相同。此后,一项人种学研究调查了独立组织的同伴支持工作者如何优先考虑“社会自我”的三个概念:吸毒者受到社会排斥的伤害;他们可以从分享经验中获益;他们可以在同伴的支持下实现社会融入。论文最后讨论了在提供服务时使用吸毒者的社会概念的影响,并为调查同伴支持工作者的独立组织如何帮助寻求康复的吸毒者发出了相当大的范围。
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引用次数: 1
From biosociality to biosolidarity: the looping effects of finding and forming social networks for body-focused repetitive behaviours. 从生物社会性到生物团结性:发现和形成以身体为中心的重复行为的社会网络的循环效应。
IF 1.8 4区 社会学 Q2 ANTHROPOLOGY Pub Date : 2021-12-01 Epub Date: 2021-02-22 DOI: 10.1080/13648470.2020.1864807
Bridget Bradley

Anthropological accounts of biosociality reveal the importance of the social relations formed through shared biomedical conditions. In the context of body-focused repetitive behaviours (BFRBs), like compulsive hair pulling (trichotillomania) and skin picking (dermatillomania), biosociality moves people from isolation towards community. After diagnosis, the powerful moment of discovering 'you are not alone' can lead to immense personal transformations, demonstrating the 'looping effects' of diagnosis and biosociality. Yet, biosocial groups do not simply exist, and must first be formed and found and their sustainability requires ongoing work and care from biosocial actors themselves. Biosociality also means different things to different people, often requiring a negotiation between secrecy and disclosure. This article acknowledges the role of stigma in biosociality, differentiating between private and public biosocial experiences. It argues that through biosociality come acts of biosolidarity, where advocacy can improve the visibility and recognition of illness groups. The circular looping effects of biosociality and biosolidarity demonstrate the way that community activism and biosociality reproduce one another. Through reflections from the anthropologist, biosolidarity is considered as a methodological tool that can help scholars to navigate the boundaries between relatedness, sociality and advocacy in the field and beyond.

对生物社会性的人类学描述揭示了通过共享生物医学条件形成的社会关系的重要性。在以身体为中心的重复行为(bfrb)的背景下,如强迫性拔毛(拔毛癖)和抠皮(拔皮癖),生物社会性使人们从孤立走向社区。诊断后,发现“你并不孤单”的强大时刻可能导致巨大的个人转变,展示诊断和生物社会性的“循环效应”。然而,生物社会群体不仅仅是存在,而且必须首先形成和发现,它们的可持续性需要生物社会行动者本身的持续工作和关心。生物社会性对不同的人也意味着不同的东西,通常需要在保密和公开之间进行协商。这篇文章承认耻辱在生物社会性中的作用,区分了私人和公共生物社会经验。它认为,通过生物社会性,可以产生生物团结行动,其中宣传可以提高对疾病群体的可见度和认可度。生物社会性和生物团结性的循环效应展示了社区行动主义和生物社会性相互复制的方式。通过人类学家的反思,生物团结被认为是一种方法论工具,可以帮助学者在该领域内外的相关性,社会性和倡导之间进行导航。
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引用次数: 10
Vaccines and vitriol: an anthropological commentary on vaccine hesitancy, decision-making and interventionism among religious minorities. 疫苗与刻薄:对宗教少数群体中疫苗犹豫、决策和干预主义的人类学评论。
IF 1.8 4区 社会学 Q2 ANTHROPOLOGY Pub Date : 2021-12-01 Epub Date: 2020-11-13 DOI: 10.1080/13648470.2020.1825618
Ben Kasstan

This commentary addresses the issue of vaccine hesitancy and decision-making among religious minority groups in high-income country settings. Recent measles outbreaks have been attributed to lower-level vaccination coverage among religious minorities, which has inspired targeted as well as wholesale public health interventions and legislation in a range of jurisdictions. The commentary takes the case of self-protective ethnic and religious minority groups, especially Haredi or 'ultra-Orthodox' Jews in the United Kingdom, to address two key aims. First, this commentary flags how damaging representations of religious minorities in recent measles outbreaks can be avoided by better understanding inner processes of vaccine decision-making and acceptance, which can, in turn, help to address hesitancy sustainably and trustfully. Second, the commentary advocates for addressing vaccine hesitancy as part of a broader re-visioning of public health relations with minority groups. This commentary calls on public health services to improve confidence in childhood vaccinations rather than resorting to compulsory (and coercive) vaccination policies in order to address lower-level vaccination coverage. The commentary signposts how essential it is to carefully navigate relationships with minority groups amidst the new forms of public health preparedness that will emerge from the 2020 Coronavirus pandemic (COVID-19).

本评论涉及高收入国家宗教少数群体对疫苗的犹豫和决策问题。最近的麻疹暴发归因于宗教少数群体的疫苗接种覆盖率较低,这激发了一系列司法管辖区有针对性和大规模的公共卫生干预措施和立法。这篇评论以自我保护的种族和宗教少数群体为例,特别是英国的Haredi或“极端正统派”犹太人,以解决两个关键目标。首先,这篇评论指出,通过更好地理解疫苗决策和接受的内在过程,可以避免宗教少数群体在最近麻疹疫情中的破坏性陈述,这反过来又有助于可持续和可信地解决犹豫问题。第二,该评论主张解决疫苗犹豫问题,作为更广泛地重新设想与少数群体的公共卫生关系的一部分。本评论呼吁公共卫生服务部门提高对儿童疫苗接种的信心,而不是诉诸强制性(和强制性)疫苗接种政策,以解决疫苗接种覆盖率较低的问题。该评论指出,在2020年冠状病毒大流行(COVID-19)将出现的新形式的公共卫生准备中,小心处理与少数群体的关系是多么重要。
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引用次数: 30
Cultivating distress: cotton, caste and farmer suicides in India. 种植困境:印度的棉花、种姓和农民自杀。
IF 1.8 4区 社会学 Q2 ANTHROPOLOGY Pub Date : 2021-12-01 Epub Date: 2021-11-03 DOI: 10.1080/13648470.2021.1993630
Nanda Kishore Kannuri, Sushrut Jadhav

Nearly 4,00,000 farmers committed suicide in India between 1995 and 2018. This translates into approximately 48 suicides every day. The majority of suicides were those from 'backwarded' castes including Dalit farmers. This ethnographic study on cotton farmer suicide reports narratives of surviving Dalit families. The results reveal that financial and moral debt when accrued within a web of family and caste-related relationships result in patterns of personal and familial humiliation, producing a profound sense of hopelessness in the Self. This loss of hope and pervasive humiliation is 'cultivated'  by a cascade of decisions taken by others with little or no responsibility to the farmers and the land they hope to cultivate as they follow different cultural and financial logic. Suicide resolves the farmers' humiliation and is a logical conclusion to the farmer's distress, which results from a reconfiguration of agricultural spaces into socially toxic places, in turn framing a local panopticon. The current corona virus pandemic is likely to impact adversely on peoples who are culturally distanced.

1995年至2018年间,印度有近40万农民自杀。这意味着每天大约有48人自杀。大多数自杀者来自“落后”种姓,包括达利特农民。这项关于棉农自杀的民族志研究报告了幸存的达利特家庭的叙述。研究结果表明,在家庭和与种姓相关的关系网络中积累的经济和道德债务会导致个人和家庭羞辱的模式,在自我中产生深刻的绝望感。这种希望的丧失和普遍的羞辱是由其他人做出的一系列决定“培养”出来的,他们对农民和他们希望耕种的土地几乎没有责任,因为他们遵循不同的文化和经济逻辑。自杀解决了农民的耻辱,是农民痛苦的一个合乎逻辑的结论,这种痛苦源于农业空间被重新配置为社会有毒的地方,反过来又构建了当地的圆形监狱。当前的冠状病毒大流行可能会对文化距离较远的人群产生不利影响。
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引用次数: 4
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