Theme 3: “I imagine as long as there’s a hand off, here’s
what you’re going to do next. There’s no impending doom” [Routine,
consistent, and clear]
AYAs and caregivers offered suggestions to reduce financial burdens
during and after cancer treatment (Table 3). Because AYAs were often
unaware of community resources that provide support until later in their
treatment, they suggested standardizing the process to provide
information to all patients and families. The initiation and follow-up
on resource-related conversations with patients and families were
critical to them accessing help: “… because these organizations
actually communicated that these programs are available, I was then able
to go ahead and take advantage of those opportunities” (AYA, 8a). Some
caregivers had received information on resources, but repeated check-ins
with families were recommended because circumstances changed with the
loss or gain of employment, the AYA’s cancer status or treatment plan,
and unanticipated costs.
The optimal timing to screen or intervene varied, with some saying as
soon as possible after diagnosis, whereas others disagreed given the
chaotic and overwhelming nature of this time. One AYA recommended that
an intervention addressing financial burden should “definitely not
[be] at the beginning. I definitely think things have to settle
down.” (AYA, 3a).
Both AYAs and caregivers said that clear roles, continuity,
accountability, and trust would be critical to effective screening for
and action to mitigate financial burden. There were differing opinions
regarding whether healthcare providers should be involved in assessing
or discussing financial burdens. Consideration of role in financial
decision making (i.e., parent, another caregiver, AYA) would be
important to effective screening and intervention success. A few
caregivers mentioned that an intervention may be helpful to AYAs if it
focused on empowering them to engage with the healthcare system in a
more sustainable way to avoid a “defeatist attitude.” Families who had
experienced prior financial hardship sometimes felt like it was them
against the hospital and insurance companies, and thus an intervention
should be tailorable to individual experiences and financial concerns.
During member checking with AYA participants, we presented our findings
and proposed that an intervention that addressed financial toxicity and
HRSN by providing tailored referrals to community resources may help to
mitigate these burdens and improve the experiences and outcomes of AYAs
cancer survivors. Respondents to these telephone calls uniformly
endorsed this approach.