权益分类	功能权益	普通用户	{{item.name}}会员
{{category.name}}	{{benefitItem.name}}

Doctoral Dissertation Research: An Ethnographic Study of Patient-Activism and an Emerging Illness

博士论文研究：患者行动主义和新发疾病的民族志研究

基本信息

批准号：
1947077
负责人：
Julie Livingston
金额：
$ 1.47万
依托单位：
New York University
依托单位国家：
美国
项目类别：
Standard Grant
财政年份：
2020
资助国家：
美国
起止时间：
2020-05-01 至 2022-04-30
项目状态：
已结题

来源：
https://www.nsf.gov/awardsearch/showAward?AWD_ID=1947077&HistoricalAwards=false
关键词：
Doctoral Dissertation Research Ethnographic Study

项目摘要

This award supports a doctoral dissertation research project to conduct a sociological study of people with chronic fatigue syndrome. The researcher will attempt to understand how people with this syndrome seek legitimation of their bodily experience, and in the process attempt to put into practice the syndrome as a disease in and beyond biomedicine. The project will build on three years of preliminary research, and it will be the first study to examine the syndrome using participant-observation as its primary research strategy. The researcher will inquire into the forms of sociality that are possible in the face of exhausted bodies, the distribution of biomedical knowledge, and the stratified nature of contemporary US healthcare. She will also explore networks of knowledge exchange among patients, doctors, researchers, and institutions that form around the diagnostic term and shape its medicalization. Results of this research are to be presented at conferences and published in academic journals. The researcher will also disseminate findings to the patient community, deliver a policy paper to policymakers, and continue to work with the patient community to develop further policy solutions. This ethnographic research project on chronic fatigue syndrome promises to make substantial contributions to Science and Technology Studies, Anthropology, and related disciplines. The researcher will systematically record in real-time the process by which symptoms are transformed into disease. The results of the study will serve to advance theories of the role of symptoms in sustaining biosociality by presenting a case study in which patient socialities emerge without known biomarkers in common. It promises to meaningfully advance understandings of the role of patient activism in the formation of novel diagnoses and new diseases within the taxonomies of Western biomedicine, and of the reasons that patient movements either succeed or fail. It will also contribute to ongoing reconsideration of the body in disability studies by theorizing impairment as a resource for collective action. Finally, it may enhance phenomenological approaches to anthropology in ways that may generate new theories of disease formation.This award reflects NSF's statutory mission and has been deemed worthy of support through evaluation using the Foundation's intellectual merit and broader impacts review criteria.

该奖项支持一项博士论文研究项目，对慢性疲劳综合征患者进行社会学研究。研究人员将试图了解患有这种综合症的人如何寻求他们身体体验的合法性，并在此过程中试图将这种综合症作为一种疾病在生物医学内外付诸实践。该项目将以三年的初步研究为基础，它将是第一个使用参与者观察作为主要研究策略来检查该综合征的研究。研究人员将探讨在面对疲惫的身体时可能出现的社会性形式，生物医学知识的分布以及当代美国医疗保健的分层性质。她还将探索围绕诊断术语形成并塑造其医学化的患者、医生、研究人员和机构之间的知识交流网络。这项研究的结果将在会议上发表，并在学术期刊上发表。研究人员还将向患者群体传播研究结果，向政策制定者提交政策文件，并继续与患者群体合作，制定进一步的政策解决方案。这个慢性疲劳综合征的民族志研究项目有望对科学技术研究、人类学和相关学科做出实质性的贡献。研究人员将系统地实时记录症状转化为疾病的过程。该研究的结果将有助于推进症状在维持生物社会性方面的作用的理论，通过提出一个病例研究，在该病例研究中，患者社会性在没有已知的共同生物标志物的情况下出现。它承诺有意义地推进理解患者行动主义在西方生物医学分类中形成新诊断和新疾病的作用，以及患者运动成功或失败的原因。它还将通过将损伤理论化作为集体行动的资源，促进正在进行的残疾研究中对身体的重新考虑。最后，它可能以可能产生疾病形成新理论的方式增强人类学现象学方法。该奖项反映了美国国家科学基金会的法定使命，并通过使用基金会的知识价值和更广泛的影响审查标准进行评估，被认为值得支持。