Unmeasured Costs of a Child's Death: Perceived Financial Burden, Work Disruptions, and Economic Coping Strategies Used by American and Australian Families Who Lost Children to Cancer

Abstract

Financial concerns represent a major stressor for families of children with cancer but remain poorly understood among those with terminally ill children. We describe the financial hardship, work disruptions, income loss, and coping strategies of families who lost children to cancer. Retrospective cross-sectional survey of 141 American and 89 Australian bereaved parents whose children died between 1990 and 1999 and 1996 to 2004, respectively, at three tertiary-care pediatric hospitals (two American, one Australian). Response rate: 63%. Thirty-four (24%) of 141 families from US centers and 34 (39%) of 88 families from the Australian center reported a great deal of financial hardship resulting from their children's illness. Work disruptions were substantial (84% in the United States, 88% in Australia). Australian families were more likely to report quitting a job (49% in Australia v 35% in the United States; P = .037). Sixty percent of families lost more than 10% of their annual income as a result of work disruptions. Australians were more likely to lose more than 40% of their income (34% in Australia v 19% in the United States; P = .035). Poor families experienced the greatest income loss. After accounting for income loss, 16% of American and 22% of Australian families dropped below the poverty line. Financial hardship was associated with poverty and income loss in all centers. Fundraising was the most common financial coping strategy (52% in the United States v 33% in Australia), followed by reduced spending. In these US and Australian centers, significant household-level financial effects of a child's death as a result of cancer were observed, especially for poor families. Interventions aimed at reducing the effects of income loss may ease financial distress.