Producing a worthy illness: Personal crowdfunding amidst financial crisis
Producing a worthy illness: Personal crowdfunding amidst financial crisis
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DOI：
10.1016/j.socscimed.2017.02.008
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发表时间：
2017-08-01
影响因子：
5.4
通讯作者：
Kenworthy, Nora J.
中科院分区：
文献类型：
--
作者：
Berliner, Lauren S.;Kenworthy, Nora J.
对于患有疾病和残疾的美国人来说，众筹已成为解决医疗保健异常费用的流行策略。紧缩的政治、社会和健康后果--以及2008年金融崩溃的余波和《平价医疗法案》（ACA）的缺陷--在GoFundMe等网站上都很明显。在这里，患者和护理人员发起活动，为医疗保健筹集捐款，希望这些捐款能够通过社交网络广泛传播。随着竞选活动之间竞争的加剧，病人和他们的亲人不得不提出令人信服的、复杂的诉求。尽管众筹越来越受欢迎，但很少有研究探讨在美国或国外越来越依赖它来促进健康的使用，影响或后果。本文分析了2016年3月至9月对200个GoFundMe活动进行的混合方法研究的数据，这些活动通过随机选择确定。除了提供关于这些活动的特征和相对成功的探索性定量数据外，更深入的文本分析还研究了众筹者如何构建关于疾病和财务需求的叙述，并试图证明自己的应得性。对疾病经济负担的担忧，加上在没有ACA医疗补助扩张的州开展的高比例运动，强调了众筹作为应对紧缩环境的重要性。成功的众筹需要活动家掌握医学和媒体知识：因此，我们认为众筹有可能通过促进依赖于不平等分布的知识来证明应得性和价值的个性化慈善形式来加深美国的社会和健康不平等。众筹叙事也分散了人们对医疗保健资金危机和社会安全网漏洞的注意力，鼓励媒体平台上对痛苦的超个性化描述，将不稳定描述为自我营销不足的结果，而不是紧缩结构性条件的必然后果。(C)2017爱思唯尔有限公司版权所有
For Americans experiencing illnesses and disabilities, crowdfunding has become a popular strategy for addressing the extraordinary costs of health care. The political, social, and health consequences of austerity-along with fallout from the 2008 financial collapse and the shortcomings of the Affordable Care Act (ACA)-are made evident in websites like GoFundMe. Here, patients and caregivers create campaigns to solicit donations for medical care, hoping that they will spread widely through social networks. As competition increases among campaigns, patients and their loved ones are obliged to produce compelling and sophisticated appeals. Despite the growing popularity of crowdfunding, little research has explored the usage, impacts, or consequences of the increasing reliance on it for health in the U.S. or abroad. This paper analyzes data from a mixed-methods study conducted from March-September 2016 of 200 GoFundMe campaigns, identified through randomized selection. In addition to presenting exploratory quantitative data on the characteristics and relative success of these campaigns, a more in-depth textual analysis examines how crowdfunders construct narratives about illness and financial need, and attempt to demonstrate their own deservingness. Concerns with the financial burdens of illness, combined with a high proportion of campaigns in states without ACA Medicaid expansion, underscored the importance of crowdfunding as a response to contexts of austerity. Successful crowdfunding requires that campaigners master medical and media literacies: as such, we argue that crowdfunding has the potential to deepen social and health inequities in the U.S. by promoting forms of individualized charity that rely on unequally-distributed literacies to demonstrate deservingness and worth. Crowdfunding narratives also distract from crises of healthcare funding and gaping holes in the social safety net by encouraging hyper-individualized accounts of suffering on media platforms where precarity is portrayed as the result of inadequate self-marketing, rather than the inevitable consequences of structural conditions of austerity. (C) 2017 Elsevier Ltd. All rights reserved.