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

Area of Science:

• Medical Sociology
• Public Health Communication
• Digital Health Humanities

Background:

• Lyme disease is a contested illness in Canada, complicating patient diagnosis and treatment.
• Patients face difficulties accessing timely and appropriate healthcare, leading to unmet needs.
• Medical crowdfunding is emerging as a strategy for patients to fund alternative therapies and manage living costs.

Purpose of the Study:

• To qualitatively explore narratives within Canadian medical crowdfunding campaigns for Lyme disease.
• To identify common themes and elements shared across these personal fundraising appeals.
• To understand how individuals communicate health needs in the context of a contested illness on public platforms.

Main Methods:

• Thematic analysis of 238 crowdfunding campaign narratives from three major platforms.
• Qualitative exploration of personal stories shared by individuals seeking funds for Lyme disease diagnosis or treatment.

Main Results:

• Four consistent themes emerged: 'what is lost' (e.g., bodily function), 'what is missing' (e.g., local care), 'what is sought' (e.g., funds for treatment abroad), and 'what is hoped for' (e.g., return to wellbeing).
• These themes underscore the emotional and personal nature of crowdfunding for a contested illness.
• Campaigns reveal the challenges patients face in validating their financial needs publicly.

Conclusions:

• Medical crowdfunding narratives for Lyme disease offer insights into patient experiences with a contested illness.
• The findings highlight the intersection of personal health, financial need, and public communication.
• Future research could explore the advocacy potential of these crowdfunding narratives.