Financial Toxicity at End-of-Life and Beyond
Mentor Name: Emily Johnston
Pediatric oncology families’ experience of financial stress at end-of-life for children with cancer is poorly understood. Families with a child with cancer face financial difficulties due to out-of-pocket expenses for treatment and travel, lost wages due to the time required to care for their child, amongst, and other financial demands. Moreover, additional costs at end-of-life may worsen financial stressors and the economic impacts of cancer care persist after death: parents report significant income loss, debt, and disruptions in employment long after the death of their child. Recently, assessment of financial needs for bereaved families within 60 days of their child’s death was endorsed as a key component of high-quality end-of- life care by an expert panel. However, it remains unknown how to best assess financial needs at end-of-life and in bereavement and how to best address the needs identified.
For a separate study about quality of end-of-life care for children with cancer, we interviewed over 50 bereaved caregivers (primarily parents), including 13 Hispanic, 12 Black, 29 non-Hispanic White caregivers. Despite not directly addressing financial stressors, the families made many references to the financial impacts of their child’s cancer and death. They also referenced services that helped them financially so they could focus on their dying child and services they wish they had access to.
Through the POST program, Ariel will conduct a secondary data analysis of the existing transcripts to describe: 1) How financial stressors affect bereaved families at end-of-life and in bereavement and 2) Programs that alleviated (or could have alleviated) financial stress at end-of-life and in bereavement. That data can then inform program development around assessing (and mitigating) financial needs at end-of-life and in bereavement. This will also provide Ariel invaluable exposure to qualitative research, the pediatric cancer experience, and being a part of a research team.
