Parental Participation in End-of-Life Care in the Neonatal Intensive Care Unit
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Date
2010-06
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Publisher
The Ohio State University
Abstract
Neonatal deaths account for 42% of inpatient pediatric deaths. Unfortunately, there is little evidence describing the symptoms exhibited by dying neonates or strategies used to manage end-of-life (EOL) care. Parents are in an important position to share their observations of their dying neonate’s symptoms and their perceptions of the effectiveness of interventions used to treat those symptoms. Due to paternalistic concerns of causing psychological distress, research specifically with parents has been limited. Without talking to parents, critical observations are being missed. Thus, the standard of care cannot be accurately established. The purpose of this study is to describe parent(s) perceptions of EOL care for their neonate and to determine parent(s) willingness to participate in EOL care research. Parents must be at least 18 years of age and have a neonate who died in the NICU following the withdrawal of life-sustaining treatment. Parent(s) were recruited through advertisements placed in Central Ohio newspapers and on a support group website. Parental interviews were conducted either face to face or via telephone. The interview schedule consists of eleven questions. Content analysis is being used to analyze the data via creation of categories. Frequencies and percentages will then be used to describe the content of these categories. Five mothers have participated in the interviews. Preliminary analyses indicated that all of the neonates died within the first month of life. The mothers perceived that their neonate was comfortable and exhibited no signs of distress at the time of death. The majority of mothers felt that they were well-informed about options for EOL care. Mothers agreed that EOL research was important but varied in how soon parents should be approached to participate. It is anticipated that parents’ observations will enhance our knowledge of symptoms exhibited at the EOL and improve the care provided to dying neonates.
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Keywords
parental participation, end-of-life care, neonatal intensive care unit, participation in research, observations at end-of-life