Understanding the financial and psychological impact of employment disruption among caregivers of pediatric HSCT recipients: a mixed methods analysis

Abstract

Purpose Pediatric hematopoietic stem cell transplantation (HSCT) confers a substantial financial burden onto patients’ families. In addition to high direct medical costs, HSCTs typically require at least one caregiver to take time away from work or other responsibilities, often leading to reduced household income. Using mixed methods, we sought to understand the impact of pediatric HSCT on caregiver employment and financial need. Methods We surveyed caregivers of living pediatric patients who underwent HSCT at one of two southeastern transplant centers between 2012 and 2018 ( N = 95). We then interviewed a subset of caregivers ( N = 18) to understand whether and how employment disruption contributed to financial distress. Results Among caregivers surveyed, the majority of household wage earners changed their work schedules to attend medical appointments and missed workdays. This resulted in income loss for 87% of families, with 31% experiencing an income reduction of over 50%. Qualitative interviews pointed to four emergent themes: (1) employment disruption exacerbated existing financial challenges; (2) parental division of labor between caregiving and providing financially led to heightened psychological distress; (3) existing employment leave and protection resources were essential but not sufficient; and (4) the ability to work remotely and having a supportive employer facilitated employment maintenance throughout the HSCT process. Conclusion Expanded employment protections and access to accommodations are needed to limit the impact of HSCT on household income, health insurance, and financial hardship. Additionally, interventions are needed to ensure caregivers are equipped with the information necessary to navigate conversations with employers and prepare for the financial and psychological reality of employment disruption. Supplementary Information The online version contains supplementary material available at 10.1007/s00520-022-06883-0.

Financial burden and recommended multilevel solutions among caregivers of pediatric hematopoietic stem cell transplant recipients

“…These findings in the context of our other work, 19 suggest that high treatment costs and prolonged inability to work when caring for recipients may put caregivers of HSCT recipients at risk of heightened severe financial burden.…”

“…Recommendations regarding employment policy are discussed in a prior publication from this study. 19 At the hospital level, caregivers recommended that proactive support be provided to them through social workers or navigators.…”

“…Survey items included measures of financial burden including financial toxicity, financial coping behaviors, care-related out-of-pocket costs, demographic information, and employment experiences (published elsewhere). 19 Financial toxicity was captured using an adapted version of the COmprehensive Score for Financial Toxicity (COST), a 12-item validated patient-reported outcome measure ranging from 0 to 44 with lower scores indicating higher financial toxicity. 20,15 COST asked participants to respond to the question as it applied to them during the first year after the HSCT.…”

Disparities in household material hardship, financial toxicity, and income loss in pediatric cancer

“…Prior literature has shown that low‐income workers have lower work flexibility, 25 which could lead to greater work disruption and financial burden. In qualitative studies, workplace flexibility has been an important factor protecting against unwanted vocational change after cancer diagnosis 26,27 . Thus, we hypothesized that greater work flexibility is associated with higher income and less financial burden.…”

“…In qualitative studies, workplace flexibility has been an important factor protecting against unwanted vocational change after cancer diagnosis. 26,27 Thus, we hypothesized that greater work flexibility is associated with higher income and less financial burden.…”