Parents' Perceptions About Their Child's Illness in Pediatric Cancer: Links with Caregiving Burden and Quality of Life

摘要

This study examined the direct and indirect links, via the caregiving burden, between parents' perceptions about the severity of their child's illness and its interference in his or her life and the parents' quality of life (QoL). The participants were 277 parents of children with malignant cancer, divided into two clinical groups according to treatment status: 126 parents of children on-treatment and 151 parents of children off-treatment. Self-reported questionnaires assessed parents' perceptions of illness severity and interference in the child's life, caregiving burden and QoL. Pediatric oncologists provided information about diagnosis, treatment status and intensity. Parents of children on-treatment reported more negative perceptions about the illness (severity and interference), higher levels of caregiving burden and worse QoL, when compared to parents of children off-treatment. Furthermore, parents' perceptions about their child's illness (severity and interference) were negatively linked to parents' QoL through caregiving burden. Additionally, the link between caregiving burden and parents' QoL was moderated by child treatment status, with stronger associations found for parents of children on-treatment. This study's findings are discussed in terms of their relevant implications for intervention with families in the pediatric cancer context.