Discussion
This study explores the financial experiences and coping responses to
the costs of cancer care for a culturally and linguistically diverse
group of younger AYAs and their caregivers. The unanticipated financial
and emotional burdens related to the financial cost of cancer and
related coping behaviors are consistent with prior research and
financial burden frameworks.2,3,10,33 However, our
qualitative inductive study design and inclusion of participants
preferring English or Spanish allows further insight into the importance
of support from the family, community, healthcare team, and insurance
companies and offers suggestions to improve financial experiences for
diverse younger AYAs with cancer and their families.
Three cross-cutting themes emerged from the data: burden, support, and
the importance of an intervention that routinely provides clear and
consistent support to address the financial challenges experienced by
AYAs and their caregivers. Our study confirmed the various and
multilevel strategies that AYAs and families rely on to cover the costs
of care, both indirect and direct.10 AYA cancer
survivors have high psychological distress compared to younger and older
survivors of cancer, and promotion of well-being is increasingly
recognized as important to improving health outcomes among
AYAs.46 Most AYAs and caregivers endorsed the
importance of emotional support, including help from family, community,
institutions, and religion, to maintaining resilience and managing
financial stresses during a difficult time. Our data support the
importance of routine and consistent screening for unmet
needs,47 and for interventions to include tailored
support to meet the needs of the AYA, such as vocational or educational
needs, depending on their life stage and
goals.46,48-50
In our study, factors related to insurance or medical bills were less
frequently associated with financial burden, in contrast with other
studies.1,51,52 AYAs in our study were all insured
with either Medicaid or parental insurance coverage, which may protect
against financial toxicity in the U.S.53,54 AYAs in
our study may also have benefitted from organizational processes
commonly supported at academic medical centers, such as prior
authorizations and copay assistance.55 This is an
example of an organization-level intervention56,57that may be effective in limiting or reducing financial toxicity for
younger AYAs. This study was conducted in a Medicaid-expansion
state,58 and the insurance experiences of AYAs in
other states or in other countries may differ.
Our analysis highlighted nuanced experiential differences between
participants. Interventions to address financial and unmet HRSN needs
should be tailored to meet an individual’s needs and consider their age,
language, culture, and other preferences. Caregivers expressed more
anxiety and worry about finances and the AYAs financial future, which
argues for a different support intervention, compared to the more
pragmatic concerns of AYAs.59 Additionally, cultural
context and humility should guide development and implementation of
financial screening or needs navigation.60,61 A more
holistic assessment of personal preferences may lead to more acceptable
and effective interventions to address individual AYA and caregiver
social needs. Indeed, most participants in our study were able to
navigate complicated financial situations due to support from multiple
levels; future interventions should strive to facilitate needs
navigation, support AYAs and caregivers, and reduce financial distress.
Effective interventions should be clear regarding the roles of involved
individuals and systems to promote transparency, accountability, and
trust-building between AYAs, caregivers, and the healthcare
team.62