Illness as Experienced by Parents of Children With End-Stage Renal Disease: The "Ill Unit"

Objectives: The purpose of this study is to shed light on the experience of parents of children who suffer from various stages of renal failure. Methods: Semistructured qualitative interviews conducted with 12 parents were analyzed using the interpretative phenomenological analysis method. Findings: Eight themes were identified and organized into two superordinate themes: intrasubjective experience and intersubjective experience. Based on our analysis, we argue that the illness is experienced as a mental system extending beyond the space and boundaries of the child's body to include his or her parents which we refer to as the ill unit. Conclusions: We have borrowed Winnicott's concept of primary maternal preoccupation in order to emphasize the role and position of parents of chronically ill children. Consequently, we propose a relational perspective in which psychological support should be delivered to the ill unit (parents and child).