Future studies should comprehensively measure costs using a consistent set of established measures and make efforts to recruit fathers to cost of illness research. Interventions to mitigate financial toxicity are needed.

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Background:To describe how pediatric cancer-induced financial distress and perceptions of their social role affected fathers' psychological responses to this distress, and quality of life (QOL) for them and their families. Procedure:We analyzed father-only responses from a larger cross-sectional survey study about the impact of pediatric cancer-induced financial distress on parents. Our analytic sample was n = 87 fathers who participated in the larger study. We analyzed their data using descriptive statistics and directed content analysis. Results:Conflicting role responsibilities (be there for child; work to maintain income and insurance coverage) seemed to generate responses resembling characteristic posttraumatic stress symptoms in reaction to acute declines in family finances and/or the chronic stress of insufficient finances to meet financial demands, that is, financial trauma. Fathers' personal sense of not being able to adequately provide for their child with cancer and also meet their family's basic needs produced embarrassment and humiliation, which led to discomfort talking about finances; fear, persistent thoughts and anxiety about money; reduced joy; beliefs that they did not deserve to express their needs; and feeling vulnerable to repeated financial stressors. Conclusions:Pediatric cancer-induced financial burden contributed to fathers' symptom severity and burden, and QOL declines. Clinicians should develop sensitivity to the multiple ways that pediatric cancer affects individuals and families. Future research should examine the effects of pediatric cancer-induced financial burden on mothers, and develop ways to sensitively and systematically assess financial burden, associated psychological responses and declines in QOL, and intervene as indicated.

Purpose Pediatric hematopoietic stem cell transplantation (HSCT) confers a substantial financial burden onto patients’ families. In addition to high direct medical costs, HSCTs typically require at least one caregiver to take time away from work or other responsibilities, often leading to reduced household income. Using mixed methods, we sought to understand the impact of pediatric HSCT on caregiver employment and financial need. Methods We surveyed caregivers of living pediatric patients who underwent HSCT at one of two southeastern transplant centers between 2012 and 2018 ( N = 95). We then interviewed a subset of caregivers ( N = 18) to understand whether and how employment disruption contributed to financial distress. Results Among caregivers surveyed, the majority of household wage earners changed their work schedules to attend medical appointments and missed workdays. This resulted in income loss for 87% of families, with 31% experiencing an income reduction of over 50%. Qualitative interviews pointed to four emergent themes: (1) employment disruption exacerbated existing financial challenges; (2) parental division of labor between caregiving and providing financially led to heightened psychological distress; (3) existing employment leave and protection resources were essential but not sufficient; and (4) the ability to work remotely and having a supportive employer facilitated employment maintenance throughout the HSCT process. Conclusion Expanded employment protections and access to accommodations are needed to limit the impact of HSCT on household income, health insurance, and financial hardship. Additionally, interventions are needed to ensure caregivers are equipped with the information necessary to navigate conversations with employers and prepare for the financial and psychological reality of employment disruption. Supplementary Information The online version contains supplementary material available at 10.1007/s00520-022-06883-0.

Background: Treatment for pediatric cancer generates costs that place sizeable demands on family finances relative to household income. Little is known about whether children sense that their cancer has created financial problems for the family. The study purpose was to describe parents' perceptions about whether their child sensed that pediatric cancer created financial problems for their family.Procedure: Family Communications Theory informed our study. We used descriptive statistics and content analysis to examine parents' (n = 417) responses to questions about the child's sense of pediatric cancer-related financial problems from a larger survey study.Results: Approximately 56.2% of parents indicated that their child had no sense of the pediatric cancer-related financial problems and 44.1% indicated their child had some. Proportions of children perceived to sense these financial problems steadily increased with age grouping, while proportions perceived to have none declined. With content analysis, we identified cognitive capacity as the key child factor influencing children's sense of these problems. Influential context factors included social norms, observed changes in family routines and spending patterns, and overheard conversations between adults. Child psychological outcomes included guilt, anxiety about money, and feelings of being a burden. Conclusion:Pediatric oncology professionals and staff should be mindful of parent preferences about burdening children with sensitive financial information, and modify their behaviors and processes accordingly. They can also provide anticipatory guidance and psycho-education about psychological responses related to the effects of pediatric cancer on family finances and the role of cognitive development in the evolution of children's awareness of those effects.