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.