University of Washington Bothell, School of Interdisciplinary Arts & Sciences, 425-352-5270, Box 358530, 18115 Campus Way NE, Bothell, WA 98011, United States.
University of Washington Bothell, School of Nursing & Health Studies, 425-352-3621, Box 358532, 18115 Campus Way NE, Bothell, WA 98011, United States.
Soc Sci Med. 2017 Aug;187:233-242. doi: 10.1016/j.socscimed.2017.02.008. Epub 2017 Feb 8.
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.
对于正在经历疾病和残疾的美国人来说,众筹已成为应对医疗保健高额费用的一种流行策略。在 GoFundMe 等网站上,可以明显看出紧缩政策的政治、社会和健康后果,以及 2008 年金融危机的余波和《平价医疗法案》(ACA)的缺陷。在这里,患者和护理人员发起活动,为医疗保健筹款,希望这些活动能在社交网络上广泛传播。随着活动之间竞争的加剧,患者及其亲人不得不提出引人注目的、复杂的诉求。尽管众筹越来越受欢迎,但很少有研究探讨过越来越依赖众筹来获得健康在美国国内和国外的使用情况、影响或后果。本文分析了 2016 年 3 月至 9 月期间通过随机选择确定的 200 个 GoFundMe 活动的混合方法研究的数据。除了提供这些活动的特征和相对成功率的探索性定量数据外,更深入的文本分析还考察了众筹者如何构建关于疾病和财务需求的叙述,并试图展示自己的应得性。对疾病带来的经济负担的担忧,加上没有 ACA 医疗补助扩张的州的活动比例较高,突显了众筹作为应对紧缩环境的一种回应的重要性。成功的众筹需要活动参与者掌握医学和媒体素养;因此,我们认为,众筹有可能通过促进依赖不平等分配的素养来证明应得性和价值的个性化慈善形式,从而加深美国的社会和健康不平等。众筹叙述也通过在媒体平台上鼓励对脆弱性进行超个体化的描述,从而转移了对医疗保健资金危机和社会安全网漏洞的关注,在这些平台上,脆弱性被描绘为自我营销不足的结果,而不是紧缩结构条件的必然后果。