Insurance, legal, and financial hardships of childhood and adolescent cancer survivors-a systematic review

Childhood and adolescent cancer survivors (CACS) experience medical and psychosocial adverse effects. Attention widens to include issues such as socio-bureaucratic hardships. This systematic review synthesized the available evidence on insurance, legal, and financial hardships to better understand the broader picture of socio-bureaucratic hardships as distinct but interrelated types of hardships. A systematic search of PubMed, Scopus, CINAHL, and PsycINFO was conducted for publications related to childhood and adolescent cancer; survivors; and insurance, legal, and financial hardships. Narrative data synthesis was performed on the extracted data. This review included N = 58 publications, originating from 14 different countries, most from the last decade (n = 39). We found that a considerable proportion of CACS experience insurance and financial hardships, including foregoing medical care due to financial constraints, problems paying medical bills, and difficulties accessing loans or insurances. Legal hardships, such as workplace discrimination, were less frequently investigated and reported. This systematic review highlights the many interrelated socio-bureaucratic hardships faced by CACS. It is important that these hardships are not underestimated or neglected. Our findings can serve as a basis for enhancing and expanding supportive care services and help inform collaborative efforts from research, policy, and practice. This review emphasizes the importance of recognizing and addressing the socio-bureaucratic challenges that extend beyond medical care. Survivors should be informed about available options and be aware of their legal rights to identify instances of injustice and seek appropriate support.