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J Perinat Educ. 2010 Winter;19(1):29-39. doi: 10.1624/105812410X481546.

Parent Involvement in End-of-Life Care and Decision Making in the Newborn Intensive Care Unit: An Integrative Review.

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LACEY M. EDEN is a staff nurse in the Intermountain Healthcare Urban South Newborn Intensive Care Unit in Provo, Utah, and a recent graduate as a family nurse practitioner. LYNN CLARK CALLISTER is a professor of maternal/newborn nursing at Brigham Young University College of Nursing in Provo, Utah, and a fellow in the American Academy of Nursing. She serves on the March of Dimes Bioethics Council and the March of Dimes National Nurses Advisory Council .


Survival rates for very preterm and critically ill infants are increasing, raising complex ethical issues for health-care providers and parents who face the challenge of making end-of-life decisions for newborns. The purpose of this integrative literature review was to evaluate parental involvement in end-of-life care and decision making for their infant in the newborn intensive care unit. Findings revealed that establishing good relationships and clear communication between health-care providers and parents builds trust and eases stress placed on parents making decisions about the care of their infant. Palliative care programs provide support for parents and facilitate their decision making. Parents can be educated about how to communicate with health-care providers. Educating nurses on how to provide end-of-life care may also help improve support for parents during this difficult time. Additional research is recommended to examine parents' needs during and after end-of-life care decisions for their newborn.


childbirth education; communication; newborn intensive care unit; palliative care; parent decision making

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