The insurance, legal, and financial situation of parents of childhood and adolescent cancer survivors: A systematic review

Background Childhood and adolescent cancer affects not only patients but also their parents, who face challenges beyond the emotional burden, including financial hardship, insurance issues, and legal complications. Aims This review synthesized existing literature on the long-term financial, insurance, and legal circumstances of parents of childhood and adolescent cancer survivors (CACS). Methods A systematic search was conducted in PubMed, Scopus, CINAHL, and PsycINFO, complemented by forward and backward citation searches. Peer-reviewed, original studies were eligible if they examined financial, insurance, or legal hardships among parents of children diagnosed with cancer before age 18 and at least two years post-diagnosis. Following screening and data extraction, a narrative synthesis was conducted. Results Twenty-four publications on parents of CACS were included. All addressed financial circumstances, five covered health insurance-related issues, and two addressed legal aspects. Parents often face long-term financial burdens due to ongoing medical expenses, loss of income, inadequate insurance coverage, and late effects of cancer and its treatment. Risk factors for financial hardship included child-related characteristics such as younger age at diagnosis, and parental characteristics such as being a mother or having a low level of education. Conclusions Even years after treatment, many parents continue to experience financial, insurance, and legal hardships. Mothers, parents with low education, and families of children diagnosed at a younger age, are particularly at risk. These findings emphasize the need for sustained support beyond treatment, systematic early identification of at-risk families, targeted education and policy-level interventions to alleviate long-term burdens faced by affected families.