Publication
Parents Value Shared Decision-Making and Sensitive Communication During End-of-Life Care in Neonatal Intensive Care: An Exploratory Study
Palomo A, de Veciana A, Areste M, Lasaosa F · Acta Paediatrica, International Journal of Paediatrics · 2026
Aim: To explore parents' needs during end-of-life decision-making and to understand their experiences in a neonatal intensive care unit (NICU) following the death of their child. Method(s): This observational, retrospective study was conducted in the NICU of a tertiary-level hospital. Data were collected using a structured questionnaire administered to parents following the death of their neonate. Three main domains were explored: information and communication, the decision-making process and comfort-focused care. Result(s): During the study period, 51 neonates died after treatment was redirected towards comfort-focused care. Of the 102 eligible parents, 52 participated. Information and communication were highly rated (mean 6.5/7), particularly the sensitive delivery of information. Parents generally felt supported during decision-making (mean 5.6/7), and most (76.9%) preferred professional guidance. However, only half perceived concordance between their preferences and the final decision. Comfort-focused care was also positively evaluated (mean 6.13/7), although opportunities to choose the place of death were limited. The questionnaire demonstrated acceptable internal consistency (alpha = 0.72). Conclusion(s): Parents value shared decision-making that respects their values while providing professional guidance. These findings highlight the importance of sensitive communication, adequate time for reflection, ongoing support throughout the decision-making process, and meaningful opportunities to say goodbye.Copyright © 2026 The Author(s). Acta Paediatrica published by John Wiley & Sons Ltd on behalf of Foundation Acta Paediatrica.
Synced from the TRENDS in Pediatric Palliative Care Zotero library, curated by The Siden Research Team. ICPCN does not host or verify the full text.