Financial Experiences of Adolescents and Emerging Adults with Cancer and
their Caregivers: A Cross-Cultural Perspective
Abstract
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.