Parents' reflections on the quality of dying and death of their children in the PICU

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Last Modified
  • March 21, 2019
Creator
  • Yorke, Diane M.
    • Affiliation: School of Nursing
Abstract
  • Most children who die do so in the hospital, most often in the PICU. Little is known about how parents view or remember this experience. In this study parents who had a child die in one PICU during 2004 and 2005 (total of 84 children, one set of twins) were asked to share their memories of having a child die in the PICU and to rate the quality of various aspects of their experience. Nineteen parents, one foster parent, and three grandparents of 14 children participated. Parents recalled memories of the experience during an audio-recorded interview. The interviews were loosely structured to have parents address what they remembered about their experiences of maintaining their family roles, establishing relationships with health care providers, sharing and communicating information, pain and symptom control for their child, and the systems of support offered by the health care team. Parents were also asked for their recommendations to improve this experience with the goal of answering the question of what is essential to enabling a good death in the PICU. Parents' evaluation of the quality of their child's dying and death in the PICU was determined using a modified version of the Quality of Dying and Death Questionnaire. The aim was to obtain information directly from parents about certain modifiable aspects of end-of-life care for children in the PICU. Results suggest that parents of dying children want more direct communication and information about their child's condition; that they want to remain both present and involved in caring for their child until and after they die; and that they want and need some follow-up contact after their child has died.
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  • In Copyright
Advisor
  • Kjervik, Diane K.
Degree granting institution
  • University of North Carolina at Chapel Hill
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  • Open access
Date uploaded
  • October 19, 2010

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