“Creating a family after battling cancer is exhausting and maddening”: Exploring real‐world experiences of young adult cancer survivors seeking financial assistance for family building after treatment

Abstract

Objective: Young adult (YA) cancer survivors who received gonadotoxic therapy are at risk for impaired fertility and/or childbearing difficulties. This study explored the experiences and financial concerns of survivors pursuing family-building through assisted reproductive technology (ART) and adoption. Methods: Retrospective study of data collected from grant applications for financial assistance with family-building. Grounded theory methodology using an inductive data-driven approach guided qualitative data analysis. Results: Participants (N=46) averaged 32 years old (SD=3.4), were primarily female (81%) and married/partnered (83%). Four main themes were identified representing the (1) emotional experiences and (2) financial barriers to family-building after cancer, (3) perceived impact on partners, and (4) disrupted life trajectory. Negative emotions were pervasive, but were balanced with hope and optimism that parenthood would be achieved. Still, the combination of high ART/adoption costs, the financial impact of cancer, and limited sources for support caused extreme financial stress. Further, in the face of these high costs, many survivors reported worry and guilt about burdening partners, particularly as couples failed to meet personal and societal expectations for parenthood timelines. Conclusion: After cancer, YAs face numerous psychosocial and financial difficulties in their pursuits of family-building when ART/adoption is needed to achieve parenthood. Survivors interested in future children may benefit from follow-up fertility counseling post-treatment including discussion of ART options, surrogacy, and adoption, as appropriate, and potential barriers. Planning for the financial cost and burden in particular may help to avoid or mitigate financial stress later on.

Applying behavioral theory to understand fertility consultation uptake after cancer

“…Consistent with commonly cited barriers to FC and preservation, our results highlight the importance of perceived barriers related to access. Study participants who did not utilize FC were more likely to report that it was “too expensive” or “too much trouble.” This was also represented in bivariate analyses, where only 40% of participants in the lower‐income group reported FC uptake compared with 58% in the higher‐income group.…”

“…Additionally, income remained as a significant covariate in the final multivariate model. Financial burden faced by young adult cancer survivors can be tremendous and is associated with worry about achieving parenthood goals, which may require additional expenses (ie, via adoption or assisted reproductive technology) . Access and financial barriers to FC and FP exist globally.…”

“…While oncology teams are initiating discussions of fertility about half of the time, rates of fertility consultation (FC) with reproductive specialists prior to cancer treatment remain inadequate, with estimates ranging from 5% to 26% . Barriers to FC include treatment‐related time constraints, high cost, patient characteristics (eg, socioeconomic status and partner status) that can influence provider discussions of fertility, lack of provider training, lack of access to care, and lack of knowledge or information . FC most often occurs at the time of cancer diagnosis, when patients have more FP options available to them but can also be beneficial later in survivorship.…”

“It's been a life‐changing experience!” A qualitative study of young adult cancer survivors’ experiences of the coexistence of negative and positive outcomes after cancer treatment

“…The participants struggled with future‐oriented concerns, especially related to fear of cancer recurrence and death, being able to provide for themselves and starting their own family. These are highly realistic concerns, as YACS are at higher risk of recurrence, the development of new cancers and serious illnesses (Bhuller, Zhang, Li et al ., ), self‐image, sexual and fertility problems (Benedict, McLeggon, Thom et al ., ; Graugaard et al ., ; Olsson, ), as well as financial and career challenges than older cancer survivors are (Nass et al ., ; Parsons, Harlan, Lynch et al ., ; Vetsch et al ., ). Here, a highly concerning finding is that the participants tended to keep these concerns to themselves.…”

The intersection of financial toxicity and family building in young adult cancer survivors

“…However, to the best of our knowledge, few studies to date have explored how cost or financial toxicity factors impact survivors' decision making or their need for financial counseling . Although cost has been cited as a barrier to undergoing fertility preservation before treatment, to our knowledge there is no indication that cancer or its financial effects dissuade survivors (or their partners) from wanting to have children after cancer …”