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Shifting Priorities for the Survival of My Child

Managing Expenses, Increasing Debt, and Tapping Into Available Resources to Maintain the Financial Stability of the Family

Tsimicalis, Argerie, PhD, RN; Stevens, Bonnie, PhD, RN; Ungar, Wendy J., MSc, PhD; Castro, Aimee, MA, MSc(A); Greenberg, Mark, MB, ChB; Barr, Ronald, MB ChB, MD

doi: 10.1097/NCC.0000000000000698
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Background Parents are confronted with a range of direct costs and intense caregiving demands following their child’s cancer diagnosis, which may potentially threaten the financial stability of the family.

Objective The aims of this study were to explore the financial impact of a new childhood cancer diagnosis on families and understand the strategies families use to manage these financial impacts.

Methods As part of the mixed-methods Childhood Cancer Cost Study, a descriptive qualitative design was conducted. Parents discussed costs and their impact in a semistructured, audio-taped interview. A qualitative content analysis was used to analyze the transcribed data.

Results Seventy-eight parents participated. Parents used several strategies to maintain financial stability. These strategies consisted of managing expenses, which entailed reducing living expenses and cutting unexpected cancer costs. Efforts to absorb these expenses required families to increase their debt while seeking ways to tap into available resources, including relying on their savings and leveraging their benefits and assets, increasing their paid work hours, relying on their support networks, and seeking help from philanthropy and government agencies for financial help.

Conclusion Parents used several strategies to manage the increased out-of-pocket expenses and reduced household income.

Implications for Practice Our findings of the financial impact of cancer costs on families provide insight into needed practice and policy changes aimed at lessening the economic impact of a childhood cancer diagnosis on the family and allow healthcare professionals and researchers to pursue more in-depth cost assessments in the future.

Author Affiliations: Ingram School of Nursing, McGill University (Dr Tsimicalis and Ms Castro); and Shriners Hospitals for Children–Canada (Dr Tsimicalis), Montreal, Quebec; Lawrence S. Bloomberg Faculty of Nursing (Dr Stevens), Institute of Health Policy, Management and Evaluation (Dr Ungar), Faculty of Medicine (Dr Greenberg), University of Toronto, Ontario; Child Health Evaluative Sciences, Research Institute (Drs Stevens, Greenberg, and Ungar), and Department of Haematology/Oncology (Dr Greenberg), The Hospital for Sick Children; and Pediatric Oncology Group of Ontario (Drs Barr and Greenberg), Toronto; and Department of Pediatrics, McMaster University, Hamilton (Dr Barr), Ontario, Canada.

Correspondence: Argerie Tsimicalis, PhD, RN, Ingram School of Nursing, McGill University, 680 Sherbrooke West Suite 1835, Montreal, Quebec, Canada H3A 2M7 (argerie.tsimicalis@mcgill.ca).

This study was generously supported by grants from the Canadian Cancer Society, Pediatric Oncology Group of Ontario (POGO) and the Canadian Institutes of Health Research (CIHR).

A.T. received PhD fellowship awards from POGO, the Canadian Cancer Society, CIHR, the University of Toronto, and The Hospital for Sick Children. She currently holds the position of nurse scientist at Shriners Hospitals for Children–Canada, where she is the recipient of funds from Mr Richard Ingram, Dr Susan French and the Newton Foundation, Tunis Shriners, and Scotiabank. B.S. served as principal investigator for the study, provided consultation to the Canadian Partnership Against Cancer, and has served as an expert witness. She is the principal investigator for the following grants: CIHR Team Grant in Children’s Pain, Translation of Research on Pain in Children, TROPIC Sustainability, and Pain in Infants with Neurologic Impairment. She also receives royalties for her book, Pain in Neonates and Infants (third edition, Elsevier). R.B. served as site principal investigator. A.C., W.J.U., M.G., and R.B. have no conflicts of interest to disclose.

Accepted for publication October 26, 2018.

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