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Determining the Costs of Families’ Support Networks Following a Child’s Cancer Diagnosis

Tsimicalis, Argerie PhD, RN; Stevens, Bonnie PhD, RN; Ungar, Wendy J. PhD; Greenberg, Mark MBChB; McKeever, Patricia PhD, RN; Agha, Mohammad PhD; Guerriere, Denise PhD, RN; Barr, Ronald MD, MBChB; Naqvi, Ahmed MBBS, DCH; Moineddin, Rahim PhD

doi: 10.1097/NCC.0b013e3182551562
Articles: Online Only

Background: Cancer in children may place considerable economic burden on more than individual family members. The costs incurred to families’ support networks (FSNs) have not been previously studied.

Objectives: The study objectives were to (a) identify and determine independent predictors of the direct and time costs incurred by the FSN and (b) explore the impact of these cancer-related costs on the FSN.

Methods: A prospective mixed-methods study was conducted. Representing the FSN, parents recorded the resources consumed and costs incurred during 1 week per month for 3 consecutive months, beginning 1 month following their child’s diagnosis. Descriptive statistics, multiple regression modeling, and descriptive qualitative analytical methods were used to analyze the data.

Results: In total, 28 fathers and 71 mothers participated. The median total direct and time costs for the 3 months were CAN$154 and $2776, respectively, per FSN. The largest component of direct and time costs was travel and foregone leisure. Direct and time costs were greatest among those parents who identified a support network at baseline. Parents relied on their FSN to “hold the fort,” which entailed providing financial support, assuming household chores, maintaining the siblings’ routines, and providing cancer-related care.

Conclusions: Families’ support networks are confronted with a wide range of direct and time costs, the largest being travel and foregone leisure.

Implications for Practice: Families’ support networks play an important role in mitigating the effects of families’ costs. Careful screening of families without an FSN is needed.

Author Affiliations: School of Nursing, Columbia University, New York (Dr Tsimicalis); Lawrence S. Bloomberg Faculty of Nursing (Drs Stevens and McKeever), Department of Health Policy, Management and Evaluation (DrsGuerriere and Ungar), Faculty of Medicine (Mr Greenberg and Mr Naqvi), and Department of Family and Community Medicine (Dr Moineddin), University of Toronto, Ontario, Canada; Child Health Evaluative Sciences, Research Institute (Dr Stevens, Mr Greenberg, and Dr Ungar) and Department of Haematology/Oncology (Mr Greenberg and Mr Naqvi), Hospital for Sick Children, Toronto, Ontario, Canada; Pediatric Oncology Group of Ontario (Dr Barr and Mr Greenberg), Toronto, Canada; and Bloorview Research Institute, Holland Bloorview Kids Rehabilitation Hospital (Dr McKeever), Toronto, Ontario, Canada; and Department of Pediatrics, McMaster University (Dr Barr), Hamilton, Ontario, Canada.

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).

Dr Tsimicalis received PhD fellowship awards from POGO, the Canadian Cancer Society, CIHR, the University of Toronto, and the Hospital for Sick Children and currently holds the position of Dean’s Distinguished Postdoctoral Fellowship at Columbia University School of Nursing.

Dr Stevens served as principal investigator for the study, provided consultation tothe Canadian Partnership Against Cancer, and has served as an expert witness. She currently holds the position of Signy Hildur Eaton Chair in Paediatric Nursing Research at the Hospital for Sick Children and 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). Mr Greenberg holds the position of POGO Chair in Childhood Cancer Control at the University of Toronto, Ontario, Canada. Dr McKeever holds the position of Bloorview Kids Foundation Chair in Childhood Disability Studies. Dr Barr served as site principal investigator. DrMoineddin provided statistical consultation for the present study. Drs Ungar, Agha, and Guerriere and Mr Naqvi have no further funding or conflicts of interest to disclose.

Correspondence: Argerie Tsimicalis, PhD, RN, Center for Health Policy, School of Nursing, Columbia University, 617 W 168th St, GB-238, New York, NY 10032 (at2704@columbia.edu).

Accepted for publication March 10, 2012.

© 2013 Lippincott Williams & Wilkins, Inc.