Keywords

Caregivers, Cost of illness, Costs and cost analysis, Intergenerational relations, Oncology, Social support, Support network

 

Authors

  1. Tsimicalis, Argerie PhD, RN
  2. Stevens, Bonnie PhD, RN
  3. Ungar, Wendy J. PhD
  4. Greenberg, Mark MBChB
  5. McKeever, Patricia PhD, RN
  6. Agha, Mohammad PhD
  7. Guerriere, Denise PhD, RN
  8. Barr, Ronald MD, MBChB
  9. Naqvi, Ahmed MBBS, DCH
  10. Moineddin, Rahim PhD

Abstract

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.