Do parents get what they want during bad news delivery in NICU?

Abstract

Abstract Objectives Little is known about parents’ preferences in breaking bad news (BBN) in neonatology. The study was aimed at comparing parents’ experiences with their first BBN discussion with a neonatologist/pediatric surgeon to their personal preferences. Methods We conducted a quantitative survey amongst 54 parents of hospitalized preterm or term infants with severe diseases in two medium-size and one small German neonatal units. Parents answered self-rated questions on how they perceived BBN during their infant’s hospital stay, asking for procedure and perception of BBN, their preferences and satisfaction with BBN. Results Overall satisfaction with BBN was moderate to high (median (min–max): 8 (1–10) on a 1–10-Likert scale). A compassionate way of disclosure correlated highest with overall satisfaction with BBN. Thorough transmission of information in an easy to understand manner emerged as another crucial point and correlated significantly to satisfaction with BBN, too. The study revealed that it was highly important for parents, that physicians had good knowledge of the infant and the course of his/her disease, which was only met in a minority of cases. Moreover, there was a major discrepancy between expected and observed professional competence of the delivering physicians. Additionally, physicians did not set aside sufficient time for BBN and parents reported a lack of transporting assurance and hope. Conclusions In BBN physicians should draw greatest attention to ensure understanding in parents, with good knowledge of child and disease and sufficient time in a trustworthy manner. Physicians should focus on transporting competence, trust and gentleness.