Parents’ perspectives of life challenges experienced by long-term paediatric brain tumour survivors: work and finances, daily and social functioning, and legal difficulties

Background Paediatric brain tumour survivors (PBTS) are at high risk for medical, neurocognitive and psychological sequelea during adulthood. Details illustrating the types and breadth of these chronic sequelae are essential to fully comprehend their impact on daily living. Purpose This study describes Canadian parents of PBTS perspectives of life challenges experienced by their now adult son or daughter related to work and finances, daily and social functioning, and legal difficulties. Method Parents of PBTS completed an anonymous online exploratory survey. Findings Forty-six of 60 invited parents completed the survey. Parents reported that PBTS experienced difficulty gaining or sustaining employment (65 %) because of their health and/or a disability and employers reticence to hire and adequately support PBTS. Independent living was considered unaffordable for PBTS who received a disability allowance (82 %) and those who were employed (50 %). Thirty percent indicated their family experienced hardship because of PBTS medical expenses, which were usually paid for out of pocket (76 %). Although the majority of PBTS were independent with daily tasks and social functioning, a subgroup required continuous support. Forty percent of employed PBTS received limited assistance to accommodate their special needs. Parents indicated their son or daughter had been the victim of theft, fraud or assault (37 %), and commonly considered them vulnerable, in need of protection and feared for their future safety. Conclusion Research that further illuminates the hardships facing PBTS and informs the development of support and resources to address PBTS vulnerabilities is warranted. Implications for Cancer Survivors PBTS are at risk for unemployment, financial challenges and legal difficulties, which appear to be poorly addressed by health and social programs.