And then there’s that… Insurance, legal, and financial hardships among childhood cancer survivors: a qualitative study with survivors and parents

Abstract Background The long-term consequences of childhood cancer extend beyond health challenges. Consequences also comprise financial, legal, and insurance concerns. This qualitative study aimed to explore the insurance, legal, and financial hardships faced by childhood and adolescent cancer survivors (CACS) in Switzerland, integrating both survivor and parental perspectives. Methods Usingnon-probability sampling, CACS and parents of CACS were recruited to participate in focus groups. The focus groups followed a semi-structured interview guide, were audio-recorded, and transcribed verbatim. Data was analyzed using qualitative content analysis. Results Across 11 focus groups, 11 survivors (mean age: 42.2 years, SD = 10.1; time since diagnosis: 31.3 years, SD = 10.1) and 18 parentsrepresenting 17 survivors (children’s mean age: 16.8 years, SD = 5.8; time since diagnosis: 9.4 years, SD = 5.8) participated. Participants described the numerous, often interrelated, insurance, legal, and financial hardships encountered by CACS during survivorship. Financial strain among CACS was closely connected to insurance-related challenges, particularly the costs of managing long-term health effects. High medical expenses, limited insurance coverage, denied disability benefits, and reduced work capacity contributed to persistent financial insecurity. Some CACS reported discrimination in employment or educational contexts and described the need to proactively seek information about their rights and to advocate for themselves. Conclusion Legal, insurance, and financial aspects constitute essential components of survivorship that, when not adequately addressed, may contribute to sustained uncertainty and long-term disadvantages for survivors and their families. To ensure equitable conditions for all survivors, integrated care, counseling, and appropriate policy frameworks are necessary.