Insights from GoFundMe posts: Analyzing GoFundMe financial aid requests from brain tumor patients in Ontario, Canada

Abstract

Abstract Background Primary central nervous system (CNS) tumors significantly affect individuals globally, with patients in Ontario, Canada, often bearing financial burdens for treatments such as oral chemotherapy due to insufficient coverage, resulting in complex insurance processes or out-of-pocket payments. However, limited understanding exists regarding other direct and indirect financial implications of their diagnosis. This study examines the financial strains, unmet needs, and overarching challenges encountered by Ontario’s brain tumor patients, utilizing GoFundMe posts as a unique data source to explore additional financial costs linked to CNS tumor diagnoses in the region. Methods A qualitative descriptive design employing thematic analysis analyzed GoFundMe posts supporting CNS tumor patients in Ontario from 2014 to 2021. A search strategy targeted posts featuring primary CNS tumor keywords, with NVivo 10 software facilitating post organization and coding. Results Focused on Ontario, the study yielded a final dataset of 154 posts from an initial pool of 9025, revealing further financial strain due to income loss among patients and caregivers. Posts highlighted various concerns: (1) navigating the complexities of accessing support services, (2) worries about family’s long-term financial and overall well-being, (3) insufficient public awareness about the financial and emotional burden on those affected, and (4) seeking emotional support, hope, and encouragement from the community. Conclusions These GoFundMe posts highlight a connection between financial burden, emotional distress, and the need for improved access to financial and emotional support services. The results emphasize distinct financial challenges faced by CNS tumor patients within Ontario’s healthcare system.