Peer-reviewed article
Parents Value Shared Decision-Making and Sensitive Communication During End-of-Life Care in Neonatal Intensive Care: An Exploratory Study.
Palomo AM, de Veciana AR, Aresté ME, Lasaosa FJC ·
Summary
Written by AI, not yet AICS's view · claude-haiku-4-5-20251001This study explored how parents experience end-of-life decision-making when their newborn dies in a neonatal intensive care unit. Researchers surveyed 52 parents at a hospital in an unspecified country after their child's death. Parents highly valued clear, sensitive communication and felt supported during decision-making, but only about half felt their preferences were actually reflected in the final care decisions.
Key points
- Information and communication were highly rated (mean 6.5/7), with parents particularly valuing sensitive delivery of information
- Most parents (76.9%) preferred professional guidance during decision-making
- Only half of parents (50%) perceived concordance between their stated preferences and the final decisions made
- Comfort-focused care was positively evaluated (mean 6.13/7), though opportunities to choose the place of death were limited
- Parents valued adequate time for reflection, ongoing support, and meaningful opportunities to say goodbye
Limitations
The study does not specify the country or hospital where it was conducted. The response rate was 51% (52 of 102 eligible parents), which could introduce selection bias if parents with different experiences were more or less likely to participate.
Abstract
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. Methods 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. Results 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 (α = 0.72). Conclusion 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.
Findings the Hub has extracted
Each claim below is labelled by its type of design and links back to this report.
- Intervention
- Structured approach to information provision, shared decision-making process, and comfort-focused care in neonatal intensive care unit
- Population
- Parents of 51 neonates who died after treatment was redirected to comfort-focused care in a tertiary neonatal intensive care unit
Key finding
Parents rated information and communication highly (mean 6.5/7)
AM et al. · Europe PMC · 21 Jun 2026