Struggles, Strengths and Strategies: The Lived Experience of Healthy Siblings of Children with End-Stage Renal Disease.

Abstract

The lives of persons with End Stage Renal Disease (ESRD) have been extended through the development of dialysis and kidney transplantation. However, along with this biotechnological and pharmacological advancement, relatively little attention has been directed to the impact of ESRD on other members of patients’ families. Drawing from a family systems perspective, stress imposed upon one member of a system is believed to also impact upon others within that system. In the case of childhood ESRD, the chronicity and prominence of the disease and treatment within the family, may increase the likelihood that others in the family are also affected. Until recently, siblings’ experiences have been largely unrecognized,1 or determined from observation or parental
accounts of the impact of illness on the family.2 3 How healthy siblings of children with ESRD experience their lives is thus not yet well understood. Research questions addressed in this study include an examination of how these siblings view themselves and their daily lives within the context of their family. How do siblings organize themselves within a family routine of care for the child with ESRD? To what extent and how are siblings’ developmental needs achieved? What are siblings’ coping practices and strengths in managing their world?