• Pediatr Crit Care Me · Nov 2012

    "I was able to still be her mom"--parenting at end of life in the pediatric intensive care unit.

    • Sarah A McGraw, Robert D Truog, Mildred Z Solomon, Adena Cohen-Bearak, Deborah E Sellers, and Elaine C Meyer.
    • Center for Applied Ethics, Education Development Center, Department of Anesthesiology, Children's Hospital Boston, Harvard Medical School, Boston, MA, USA.
    • Pediatr Crit Care Me. 2012 Nov 1; 13 (6): e350-6.

    ObjectivesThe death of a child in the pediatric intensive care unit is perhaps one of the most devastating and challenging experiences a parent can ever endure. This article examines how parents of children dying in the pediatric intensive care unit understood their role and discusses implications for clinical care and policy.DesignRetrospective, qualitative study.SettingTwo pediatric intensive care units located in children's hospitals within academic medical centers in the northeastern United States.SubjectsParents of 18 children who died in the pediatric intensive care unit.InterventionsSemistructured telephone interviews, digitally recorded and transcribed.Measurements And Main ResultsMany of the factors deemed important by the parents related to their capacity to be a "good parent" to their child throughout his or her stay in the pediatric intensive care unit. Specifically, parents sought meaningful ways to express and assert their parenthood across three domains: 1) providing love, comfort, and care; 2) creating security and privacy for the family; and 3) exercising responsibility for what happens to one's child.ConclusionsParents' ability to fulfill the essential features of their role as parents of children dying in the pediatric intensive care unit shapes how they perceive the quality of the experience. Pediatric intensive care unit clinical care and policies can and should uphold and protect these features enabling parents to feel that, despite the outcome, they had done their best on behalf of their children.

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