Financial toxicity in pediatric cancer: lived experiences and coping strategies of parents

Résumé fourni par la source

PURPOSE: Parents and other caregivers of pediatric cancer patients often experience severe financial toxicity due to prolonged treatment durations and substantial out-of-pocket expenses, compounding both physical and psychological burdens. Despite increasing recognition, a comprehensive understanding of these experiences remains limited. This study explored the lived experiences and coping strategies of parents confronting financial toxicity in the context of pediatric cancer in China. METHOD: A descriptive phenomenological approach was employed to examine parents' lived experiences. Between April and May 2024, semi-structured, in-depth interviews were conducted with 20 parents of children with cancer, recruited through purposive sampling from three tertiary hospital in Shandong Province, China. All interviews were audio-recorded, transcribed verbatim, and analyzed using Giorgi's phenomenological method, assisted by NVivo 12.0. RESULTS: Analysis of the interview data identified four major categories encompassing twelve subcategories. Financial toxicity stemmed from diverse sources, including cancer-related factors, limited household economic resilience, societal expectations, and gaps in insurance coverage. Consequences included asset depletion, ongoing financial hardship, and restricted access to optimal care. Parents reported substantial psychological distress-such as anxiety, depression, and social isolation-and primarily employed passive and unsustainable coping strategies, including borrowing, asset liquidation, cutting essential expenditures, and informal employment. CONCLUSION: Pediatric cancer imposed a heavy financial burden that influenced treatment decisions, parental mental health, and overall family well-being. Inadequate insurance and limited social support exacerbated this burden. Targeted financial assistance and policy reforms are urgently needed to mitigate the impact and improve health outcomes for affected parents. CLINICAL TRIAL NUMBER: Not applicable.

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