Identifying the Financial Toxicity Experiences of Childhood Cancer Survivors Through Partnership With a Community...

Financial toxicity (FT) refers to cancer-related economic distress and hardship, and disproportionately affects adolescent/young adult (AYA) survivors and minoritized groups. This study explored the FT experiences of AYA survivors of childhood cancer and their parents, and the perspective of staff members of a community-based cancer support organization in a rural region with majority Hispanic/Latino (H/L) residents and high rates of non-English language preference.

A needs assessment study was conducted in partnership with Jacob's Heart, a nonprofit organization that serves predominantly H/L families of childhood cancer in a rural region in California. English- and Spanish-speaking AYA survivors, parents, and Jacob's Heart staff members completed semi-structured interviews. Qualitative data were analyzed using an applied thematic analysis approach.

Participants included 12 AYAs, 11 parents, and 7 organization staff. Material hardship was characterized by direct and indirect medical costs (e.g., time, transportation), which impacted parents' employment, required balancing caregiving and financial needs, and caused economic strain. Behavioral effects of FT included adaptations to meet basic needs; cost-coping behaviors included skipping medical visits. Parents and survivors experienced financial stress and worry, exacerbated by disruption in parents' employment and income, transportation pressures of living in a rural area, challenges obtaining or maintaining insurance coverage, and lack of a safety net. Support needs and resources were described.

AYA survivors of childhood cancer and their parents experience long-lasting FT across multiple domains, which is exacerbated by socioeconomic and structural factors. Interventions targeting FT should partner with community-based organizations to reach vulnerable populations.