Simon Fraser University, Canada.
Health (London). 2021 Nov;25(6):707-721. doi: 10.1177/1363459320912808. Epub 2020 Mar 23.
Lyme disease remains a contested illness in Canada, thereby making the diagnostic and treatment journeys difficult for some people. One outcome of this is that increasing numbers of people are turning to medical crowdfunding to support access to alternative therapies, non-local health care providers and assist with managing the costs of everyday life. In this analysis, we qualitatively explore the narratives shared in Canadians' crowdfunding campaigns to support Lyme disease treatment or diagnosis to identify whether or not any common elements shared in these narratives exist, and if so, what they are. We identified 238 campaigns for inclusion from three prominent crowdfunding platforms. Thematic analysis of the campaign narratives shows four consistent themes shared in these campaigns: what is lost (e.g. bodily ability), what is missing (e.g. local care options), what is sought (e.g. funds to cover treatment abroad) and what is hoped for (e.g. return to wellbeing). These themes demonstrate the highly personal and emotional nature of medical crowdfunding, particularly in the context of a contested illness that may lead some to question the legitimacy of one's financial need. This analysis contributes valuable new insights to the nascent scholarship on medical crowdfunding, and particularly to our understanding of how people communicate about their health and bodily needs on this public platform. It also identifies important directions for future research, including the potential for crowdfunding narratives to be used for advocacy.
莱姆病在加拿大仍然是一种有争议的疾病,因此,一些人在诊断和治疗过程中会遇到困难。其结果之一是,越来越多的人转向医疗众筹来获得替代疗法、非本地医疗服务提供者的支持,并帮助支付日常生活费用。在这项分析中,我们对加拿大人众筹活动中的叙述进行了定性研究,以支持莱姆病的治疗或诊断,以确定这些叙述中是否存在任何共同的元素,如果存在,它们是什么。我们从三个知名众筹平台中确定了 238 个符合条件的活动。对活动叙述的主题分析显示,这些活动中有四个一致的主题:失去了什么(例如身体能力)、缺失了什么(例如当地的护理选择)、寻求什么(例如支付国外治疗的资金)和希望得到什么(例如恢复健康)。这些主题展示了医疗众筹的高度个人化和情绪化的性质,特别是在一种可能导致一些人质疑其财务需求合法性的有争议的疾病背景下。这项分析为医疗众筹这一新兴学术领域提供了有价值的新见解,特别是让我们更好地理解人们如何在这个公共平台上交流他们的健康和身体需求。它还确定了未来研究的重要方向,包括众筹叙述可能被用于宣传的潜力。