"Care that matters": Family-centered care, caregiving burden, and adaptation in parents of children with cancer.

Abstract

Family-centered care (FCC) is a health-care delivery approach endorsing the support and participation of families. To date, little research has addressed the associations between FCC and adaptation outcomes specifically in the context of pediatric cancer. The main objective of this research was to identify the direct and indirect associations, through caregiving burden, between parents' FCC and quality of life (QoL) and life satisfaction. Participants were 204 parents of children diagnosed with cancer. Parents answered the Measure of Processes of Care questionnaire to evaluate their perceptions of FCC in 2 domains: family-centered services and provision of general information. Perceptions of caregiving burden (Revised Burden Measure), QoL (EUROHIS-QoL-8), and life satisfaction (Satisfaction with Life Scale) were also assessed. Pediatric oncologists provided information on the child's diagnosis and treatment status. Findings showed that when parents perceived their children's health care as more family-centered, they also reported lower caregiving burden. Family-centered services were indirectly linked to QoL and life satisfaction through caregiving burden. This research suggests that the way parents perceive formal care, namely as being more or less family-centered, may influence the burden they experience as caregivers of a child with cancer and, indirectly, their adaptation. These findings highlight the relevance of gaining greater understanding of the interaction between the family and the health-care systems in the context of pediatric cancer.