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.