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Journal of Perinatology (2007) 27, 510516 r 2007 Nature Publishing Group All rights reserved. 0743-8346/07 $30 www.nature.com/jp
ORIGINAL ARTICLE
Infant end-of-life care: the parents perspective
CL Brosig1, RL Pierucci2, MJ Kupst1 and SR Leuthner1
1Department of Pediatrics, Medical College of Wisconsin, Milwaukee, WI, USA and 2Kalamazoo Center of Medical Studies, Kalamazoo, MI, USA
Objective: The purpose of this study was to identify factors important to parents in their infants end-of-life care.
Study Design: Participants were parents (n 19 families) whose infant (less than 1 year old) had died. Parents completed the Revised Grief Experience Inventory (RGEI) and a semi-structured interview regarding their infants end-of-life care. Interviews were rated using the Post-Death Adaptation Scale (PDAS).
Result: Parents scored signicantly lower than the normative sample on the RGEI, and PDAS scores suggested that these parents were adapting positively. Parent interviews identied the aspects of care that were important to parents: honesty, empowered decision-making, parental care, environment, faith/trust in nursing care, physicians bearing witness and support from other hospital care providers.
Conclusion: Results of this study suggest that parents can effectively cope following the death of an infant and the medical staff can do much to improve the end-of-life care for infants and their families. Journal of Perinatology (2007) 27, 510516; doi:10.1038/sj.jp.7211755; published online 19 April 2007
Keywords: palliative care; grief; parental coping
Introduction Despite extensive advances in perinatal medicine, infants still die. In 2003, 28 428 infant deaths were reported in the United States, which represents an infant mortality rate of 6.9 per 1000 live births. Congenital malformations remain the leading cause of infant death (20%).1 Of the children who die, a majority of them die in the hospital, typically in the neonatal or pediatric intensive care unit.2,3
While a great deal of literature supports that hospice and palliative care services improve the quality of life in terminal adult patients, less is known about the benets of palliative care for infants and children.
In 2000, the Committee on Bioethics and Committee on Hospital Care of the American Academy of Pediatrics outlined the principles of palliative care for children.4 The Committee recommended that
integrated palliative care services should be made available to all children living with a life-threatening or terminal condition. Others have suggested that palliative care services...