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.