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

• DOI: 10.1093/nop/npae069
• Publication Date: 2024-07-19T16:24:15Z
• Authors: Kaviya Devaraja; Jonathan Avery; Yajur Iyengar; Yunyi Zhang; Seth A Climans
• Keywords: Thematic Analysis

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