Financial hardships and psychosocial outcomes among parents of children who die of cancer

Abstract

Background Caregivers experience financial hardship during a child's cancer treatment and after their child's death. These bereaved caregivers also experience negative psychosocial outcomes following the death of a child, but the relationship between financial hardship and negative psychosocial outcomes is poorly understood in this population. Methods We surveyed self‐selected bereaved caregivers as part of a publicly posted survey through Alex's Lemonade Stand Foundation in order to explore family experiences after losing a child to cancer. The survey contained questions regarding parent psychosocial and financial outcomes following their child's death. Results One‐hundred seventy‐six caregivers completed the survey a median of 7 years after their child's death. The majority were female (91%), non‐Hispanic White (97%), and married or living with a domestic partner (76%). Overall, 31% of caregivers reported that their child's death significantly impacted the financial well‐being of their family, 23% experienced a decrease in income following their child's death, and 14% were still paying medical expenses. Financial hardship that the caregiver attributed to the child's death was associated with feeling lonely and isolated (adjusted relative risk [ARR] = 1.7, 95% CI: 1.1–2.7) and living day to day (ARR = 1.8, 95% CI: 1.3–2.5), even after adjustment for household income and time since child's death. Conclusions Caregivers experience multiple financial hardships following the death of a child to cancer, which endure for years after the child's death. These hardships are associated with negative psychosocial outcomes, demonstrating the need for both financial and psychosocial interventions for caregivers following the death of a child to cancer.

Family characteristics and childcare patterns associated with early social functioning in cancer‐bereaved parents

“…33 A recent study found that 31% of bereaved parents reported that their child's death significantly affected the family's financial well-being, and 14% were still paying medical expenses an average of 5 years after the death. 34 Moreover, financial hardship related to a child's death has been associated with parental feelings of loneliness and isolatation, 34 which may result in heightened or prolonged grief. The high rate of HMH in this population and the association between financial hardship and parental social functioning emphasize the need for a standardized approach to screening and access to needed resources for all families both during treatment, as has recently been recommended, 35 Our study findings must be considered within the following limitations.…”

“…Work disruptions after the child's death result in significant income loss; the greatest income loss was again seen in poor families 33 . A recent study found that 31% of bereaved parents reported that their child's death significantly affected the family's financial well‐being, and 14% were still paying medical expenses an average of 5 years after the death 34 . Moreover, financial hardship related to a child's death has been associated with parental feelings of loneliness and isolatation, 34 which may result in heightened or prolonged grief.…”