• 文献检索
  • 文档翻译
  • 深度研究
  • 学术资讯
  • Suppr Zotero 插件Zotero 插件
  • 邀请有礼
  • 套餐&价格
  • 历史记录
应用&插件
Suppr Zotero 插件Zotero 插件浏览器插件Mac 客户端Windows 客户端微信小程序
定价
高级版会员购买积分包购买API积分包
服务
文献检索文档翻译深度研究API 文档MCP 服务
关于我们
关于 Suppr公司介绍联系我们用户协议隐私条款
关注我们

Suppr 超能文献

核心技术专利:CN118964589B侵权必究
粤ICP备2023148730 号-1Suppr @ 2026

文献检索

告别复杂PubMed语法,用中文像聊天一样搜索,搜遍4000万医学文献。AI智能推荐,让科研检索更轻松。

立即免费搜索

文件翻译

保留排版,准确专业,支持PDF/Word/PPT等文件格式,支持 12+语言互译。

免费翻译文档

深度研究

AI帮你快速写综述,25分钟生成高质量综述,智能提取关键信息,辅助科研写作。

立即免费体验

失去、缺失、寻求和希望:为莱姆病的医学众筹活动叙事进行定性探索。

What was lost, missing, sought and hoped for: Qualitatively exploring medical crowdfunding campaign narratives for Lyme disease.

机构信息

Simon Fraser University, Canada.

出版信息

Health (London). 2021 Nov;25(6):707-721. doi: 10.1177/1363459320912808. Epub 2020 Mar 23.

DOI:10.1177/1363459320912808
PMID:32202156
Abstract

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.

摘要

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。

相似文献

1
What was lost, missing, sought and hoped for: Qualitatively exploring medical crowdfunding campaign narratives for Lyme disease.失去、缺失、寻求和希望:为莱姆病的医学众筹活动叙事进行定性探索。
Health (London). 2021 Nov;25(6):707-721. doi: 10.1177/1363459320912808. Epub 2020 Mar 23.
2
What Medical Crowdfunding Campaigns Can Tell Us About Local Health System Gaps and Deficiencies: Exploratory Analysis of British Columbia, Canada.医疗众筹活动能告诉我们关于当地卫生系统的差距与不足:加拿大不列颠哥伦比亚省的探索性分析
J Med Internet Res. 2020 May 22;22(5):e16982. doi: 10.2196/16982.
3
Crowdfunding abortion: an exploratory thematic analysis of fundraising for a stigmatized medical procedure.众筹堕胎:对一种被污名化的医疗程序筹款的探索性主题分析。
BMC Womens Health. 2020 May 4;20(1):90. doi: 10.1186/s12905-020-00938-2.
4
Qualitatively exploring the intersection of health and housing needs in Canadian crowdfunding campaigns.定性探讨加拿大众筹活动中健康和住房需求的交集。
BMC Public Health. 2022 Jan 26;22(1):176. doi: 10.1186/s12889-022-12599-x.
5
"We don't want him worrying about how he will pay to save his life": Using medical crowdfunding to explore lived experiences with addiction services in Canada.“我们不想让他为如何支付救命钱而担心”:利用医疗众筹探索加拿大成瘾服务的真实体验。
Int J Drug Policy. 2019 Mar;65:73-77. doi: 10.1016/j.drugpo.2018.12.016. Epub 2019 Jan 25.
6
Medical crowdfunding in a healthcare system with universal coverage: an exploratory study.全民医保体系下的医疗众筹:一项探索性研究。
BMC Public Health. 2020 Nov 9;20(1):1672. doi: 10.1186/s12889-020-09693-3.
7
Producing a worthy illness: Personal crowdfunding amidst financial crisis.制造有价值的疾病:金融危机中的个人众筹。
Soc Sci Med. 2017 Aug;187:233-242. doi: 10.1016/j.socscimed.2017.02.008. Epub 2017 Feb 8.
8
Appealing to the crowd: ethical justifications in Canadian medical crowdfunding campaigns.诉诸大众:加拿大医疗众筹活动中的伦理正当理由。
J Med Ethics. 2017 Jun;43(6):364-367. doi: 10.1136/medethics-2016-103933. Epub 2017 Jan 30.
9
Ethical implications of medical crowdfunding: the case of Charlie Gard.医疗众筹的伦理问题:以 Charlie Gard 为例。
J Med Ethics. 2018 Jul;44(7):453-457. doi: 10.1136/medethics-2017-104717. Epub 2018 May 4.
10
Spatially exploring the intersection of socioeconomic status and Canadian cancer-related medical crowdfunding campaigns.空间探索社会经济地位与加拿大癌症相关医疗众筹活动的交集。
BMJ Open. 2019 Jun 20;9(6):e026365. doi: 10.1136/bmjopen-2018-026365.

引用本文的文献

1
The Use of Medical Crowdfunding to Mitigate the Personal Costs of Serious Chronic Illness: Scoping Review.利用医疗众筹减轻严重慢性疾病的个人负担:范围综述。
J Med Internet Res. 2023 Dec 4;25:e44530. doi: 10.2196/44530.
2
Struggling, helping and adapting: Crowdfunding motivations and outcomes during the early US COVID-19 pandemic.挣扎、帮助和适应:美国 COVID-19 大流行早期的众筹动机和结果。
Sociol Health Illn. 2023 Feb;45(2):298-316. doi: 10.1111/1467-9566.13568. Epub 2022 Oct 14.
3
An overview of Fintech applications to solve the puzzle of health care funding: state-of-the-art in medical crowdfunding.
金融科技应用于解决医疗保健资金难题的概述:医疗众筹的最新进展。
Financ Innov. 2022;8(1):84. doi: 10.1186/s40854-022-00388-9. Epub 2022 Sep 19.
4
Qualitatively exploring the intersection of health and housing needs in Canadian crowdfunding campaigns.定性探讨加拿大众筹活动中健康和住房需求的交集。
BMC Public Health. 2022 Jan 26;22(1):176. doi: 10.1186/s12889-022-12599-x.
5
Experience and knowledge of Lyme disease: A scoping review of patient-provider communication.莱姆病的经验和知识:医患沟通的范围综述。
Ticks Tick Borne Dis. 2021 Jul;12(4):101714. doi: 10.1016/j.ttbdis.2021.101714. Epub 2021 Mar 23.
6
A Systematic Review on Cloud Storage Mechanisms Concerning e-Healthcare Systems.云存储机制在电子医疗系统中的应用:系统综述
Sensors (Basel). 2020 Sep 21;20(18):5392. doi: 10.3390/s20185392.