Emotional Burdens
Nearly all respondents mentioned the emotional burden that the costs of
care caused their families. Some AYAs expressed worrying about how much
their family had sacrificed for them to receive care, including reducing
income, increasing out-of-pocket costs, or often, both. AYAs often
avoided worrying their family with additional stressors (such as
medication and transportation fees) unless absolutely necessary, and
that they “would just swallow the cost” (AYA, 3a).
For caregivers, few mentioned a “burden” when discussing the AYA’s
cancer, but rather expressed enduring worries, including concerns for
the well-being, including financial stability, of the AYA. Concerns
included difficulty maintaining insurance for the AYA or worries that
the caregiver was failing in other responsibilities (e.g., caring for
other family members, their career). To many, however, the most
important thing amidst the worries was “la salud” of the AYA.