Behavioral and Psychological Financial Hardship Among Caregivers of Pediatric Cancer Patients

Financial hardship encompasses material, behavioral, and psychological domains; however, most research among caregivers of pediatric cancer patients has focused on material hardship. This study examined factors associated with behavioral and psychological financial hardship among caregivers of pediatric cancer patients in Nebraska.

We conducted a cross-sectional survey of caregivers of children diagnosed within the past 5 years and treated at two pediatric oncology specialty clinics. Behavioral hardship was defined as delaying medical or mental healthcare due to cost, while psychological hardship was measured by worry about ability to pay medical bills. Descriptive statistics and poisson regression with robust variance were used to identify associated factors.

Of 165 caregivers, 67.5% reported concern about paying large medical bills related to their child's cancer, and 40% worried about their ability to pay if they themselves became ill. In the past 12 months, 38.6% delayed medical care and 26% delayed mental healthcare due to cost. Middle socio-economic status (SES) caregivers were more likely than high SES caregivers to delay medical care (aPR: 1.82, 95% CI: 1.08-3.06, p = 0.02) and to worry about paying medical bills. Younger caregivers were more likely to delay mental healthcare, while male caregivers more often reported worry about bills. Having a child on therapy was also associated with greater worry.

Behavioral and psychological financial hardships are common among pediatric cancer caregivers and vary by SES, age, and gender. Routine screening for financial hardship and targeted interventions are needed to support caregivers and guide resource allocation.