• Amy E Baughcum, Christine A Fortney, Adrien M Winning, Zackery D O Dunnells, Lisa M Humphrey, and Cynthia A Gerhardt.
• Department of Psychology and Neuropsychology, Nationwide Children's Hospital, Columbus, Ohio (Drs Baughcum and Gerhardt); Department of Pediatrics, College of Medicine, The Ohio State University, Columbus (Drs Baughcum, Humphrey, and Gerhardt); The Martha S. Pitzer Center for Women, Children and Youth, College of Nursing, The Ohio State University, Columbus (Dr Fortney); Center for Biobehavioral Health, The Research Institute at Nationwide Children's Hospital, Columbus, Ohio (Dr. Fortney, Ms Winning, Mr Dunnells, and Dr Gerhardt); and Department of Psychology, The Ohio State University, Columbus (Dr Gerhardt).
• Adv Neonatal Care. 2020 Apr 1; 20 (2): 118-126.

BackgroundLearning directly from bereaved parents about their experiences in the neonatal intensive care unit (NICU) can improve services at end-of-life (EOL) care. Parents who perceive that their infant suffered may report less satisfaction with care and may be at greater risk for distress after the death. Despite calls to improve EOL care for children, limited research has examined the EOL experiences of families in the NICU.PurposeWe examined parent perceptions of their infant's EOL experience (eg, symptom burden and suffering) and satisfaction with care in the NICU.Methods/Search StrategyForty-two mothers and 27 fathers (representing 42 infants) participated in a mixed-methods study between 3 months and 5 years after their infant's death (mean = 39.45 months, SD = 17.19). Parents reported on healthcare satisfaction, unmet needs, and infant symptoms and suffering in the final week of life.Findings/ResultsParents reported high levels of healthcare satisfaction, with relative strengths in providers' technical skills and inclusion of the family. Greater perceived infant suffering was associated with lower healthcare satisfaction and fewer well-met needs at EOL. Parents' understanding of their infant's condition, emotional support, communication, symptom management, and bereavement care were identified as areas for improvement.Implications For PracticeParents value comprehensive, family-centered care in the NICU. Additionally, monitoring and alleviating infant symptoms contribute to greater parental satisfaction with care. Improving staff knowledge about EOL care and developing structured bereavement follow-up programs may enhance healthcare satisfaction and family outcomes.Implications For ResearchProspective studies are needed to better understand parental perceptions of EOL care and the influence on later parental adjustment.

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