Purpose: We qualitatively explored the financial experiences of adolescents and emerging adults with cancer and their caregivers to inform future screening efforts and intervention development. Methods: We recruited English or Spanish speaking adolescents and emerging young adults (younger AYAs: 15 – 25 years) who were treated for cancer within the past two years and their caregivers to participate in semi-structured interviews. Interviews explored how the financial costs of cancer care were experienced by younger AYAs and caregivers. Data was inductively coded using conventional content analysis. Codes were reviewed with the study team and interviews continued until saturation was reached. Results: We interviewed 17 participants; 9 were younger AYAs, and 7 preferred Spanish. We identified three cross-cutting themes: burden, support, and routine, consistent, and clear. Burden came in the form of unexpected costs such as transportation to appointments, as well as emotional burdens such as AYAs worrying about how much their family sacrificed for their care or caregivers worrying for the AYA’s physical and financial future. Support, in the form of familial, community, healthcare institution, and insurance, was critical to mitigating the effects of financial toxicity in this population. Participants emphasized the importance of meeting individual financial needs by routinely and consistently asking about financial factors and providing clear guidance to navigate these needs. Conclusion: Younger AYAs and their caregivers experience significant financial challenges during cancer treatment and often rely on key supports to alleviate these stressors. When developing or implementing financial screening or navigation interventions to mitigate financial toxicity, clinicians and health systems should develop clear, consistent procedures to meet the needs and preferences of younger AYA cancer survivors and their families.
