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.
Medical crowdfunding is growing in popularity in a number of countries, including Canada. In the crowdfunding context people write and share their own stories. This activity also intersects with conventional news media practices when journalists prepare stories about these campaigns. This intersection raises the question of what are print journalists' responsibilities towards covering human interest stories based on medical crowdfunding campaigns? In this qualitative analysis we explore this question through reporting on interviews conducted with 14 Canadian news media professionals. After transcript review, emergent themes were compared and contrasted across investigators to reach confirmation on the scope and scale of emergent themes. These themes were then contrasted against the existing literature and our research goals to aid in interpreting their significance. Thematic analysis of the interviews identified three key domains of responsibility for journalists, which are: to the story, to the campaign and campaigner, and to their profession.
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