Bereaved Parents' Perspectives on Financial Toxicity at End of Life for Children with Cancer: A Qualitative Study.

OBJECTIVE

To explore financial toxicity (FT) experienced by the parents of children with cancer at end-of-life (EOL), including exploring differences by race and ethnicity.

STUDY DESIGN

We performed secondary analysis of semistructured interviews of bereaved parents' perspectives on quality EOL care. Fifty-five interviews were conducted in California and Alabama representing 48 children (0-21 years at time of death) who died of cancer ≥6 months prior. Quotes related to FT were identified and iteratively grouped into themes without an a priori framework.

RESULTS

Most participants were non-Hispanic White (30; 55%), and the most common diagnoses were noncentral nervous system solid tumors (16; 33%) and central nervous system tumors (16; 33%). Children died at a mean age of 11 and a median of 4 years prior to the interview. Almost all parents (52; 95%) discussed FT, including all Black and Hispanic parents. Parents identified transportation, housing, other basic needs, funeral costs, and medical costs as well as work disruptions as contributors to FT at EOL. Barriers to financial wellness included navigating insurance, insufficient financial support from the hospital, and long-term FT from treatment. Many parents discussed how the hospital and community served as facilitators of financial wellness. In some cases, finances prevented families from accessing nursing services and mental health support and affected EOL decisions.

CONCLUSIONS

As FT affected almost all families' EOL experience, pediatric oncology programs should routinely screen for FT at EOL and ensure they have the resources to respond.