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

Abstract

The purpose of this study is to shed light on the experience of parents of children who suffer from various stages of renal failure. Semistructured qualitative interviews conducted with 12 parents were analyzed using the interpretative phenomenological analysis method. 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. 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).