Journal
ADVANCES IN NEONATAL CARE
Volume 20, Issue 2, Pages 118-126Publisher
LIPPINCOTT WILLIAMS & WILKINS
DOI: 10.1097/ANC.0000000000000677
Keywords
bereavement; end-of-life; infant; NICU; parents; satisfaction
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Funding
- Research Institute at Nationwide Children's Hospital [20051014]
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Background: Learning 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. Purpose: We examined parent perceptions of their infant's EOL experience (eg, symptom burden and suffering) and satisfaction with care in the NICU. Methods/Search Strategy: Forty-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/Results: Parents 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 Research: Prospective studies are needed to better understand parental perceptions of EOL care and the influence on later parental adjustment.
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