Parents Value Shared Decision‐Making and Sensitive Communication During End‐of‐Life Care in Neonatal Intensive Care: An Exploratory Study
Ana Morillo Palomo, Ana Riverola de Veciana, Montserrat Esquerda Aresté, Francisco José Cambra LasaosaABSTRACT
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
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.