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