Understanding the financial and psychological impact of employment disruption among caregivers of pediatric HSCT recipients: a mixed methods analysis. Support Care Cancer 2022 Jun;30(6):4747-4757
Date
02/09/2022Pubmed ID
35132462Pubmed Central ID
PMC8821838DOI
10.1007/s00520-022-06883-0Scopus ID
2-s2.0-85124281360 (requires institutional sign-in at Scopus site) 9 CitationsAbstract
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.
Author List
Biddell CB, Kasow KA, Killela MK, Page KM, Wheeler SB, Drier SW, Kelly MS, Robles JM, Spees LPAuthor
Kristin Page MD, MHS, MEd Associate Professor in the Pediatrics department at Medical College of WisconsinMESH terms used to index this publication - Major topics in bold
CaregiversChild
Employment
Hematopoietic Stem Cell Transplantation
Humans
Income
