Parents’ memories of having a child die in the PICU

Abstract

• Most children who die do so in hospital, frequently in pediatric intensive care units (PICU). Little is known about how parents/ families remember this experience. • This study asked parents who had a child die in one PICU to tell the story of their child's dying and to evaluate this experience using a modified form of the Quality of Dying and Death Questionnaire. • Findings suggest that parents of children who die in the PICU want more direct communication and information about their child's condition; that they want to remain both present and involved in their child's care; and, that they need and want some form of follow-up care after their child has died.