Introduction Health professionals in neonatal intensive care units (NICUs) are regularly confronted with an infant’s imminent death. The death of a child is unnatural to parents and intensely affects them. Providing end-of-life care and follow-up care is important to help parents cope. The aim of this study was to explore this type of supportive care in European NICUs.
Methods We designed an online survey using Survey Monkey ® including questions about visiting hours, protocols around an infant’s death and follow-up care for parents. The survey was sent to 124 nurses, physicians and nurse managers working in 24 European countries. Descriptive statistics were applied to present the results.
Results The response rate was 44% (55/124), concerning 47 NICUs in 20 countries. In most NICUs (91%), parents are welcome 22 to 24 h per day to be with their child. In 93% of the NICUs parents are invited to hold their child during the dying process; in 59% of NICUs parents usually wash their child after death. With respect to remembrances given to parents: items include photographs (91%), foot or handprints (83%), lock of hair (74%) or diaries kept by the nurses (35%). In 39 NICUs (83%) parents received follow-up care; in most cases in face-to-face meetings.
Conclusion Most NICUs provide supportive services to parents during the dying process of their child. We suspect some selection bias because not all European countries were represented. This is a first attempt to benchmark this sensitive practice.