Concern for mortality in the neonatal intensive care unit (NICU): Parent and physician perspectives

OBJECTIVE:: The objectives of this study are as follows: (1) to determine the incidence of parental concern for mortality (PCM) and any potential predictors for it among parents of infants admitted to the Neonatal Intensive Care Unit (NICU), and (2) to explore physicians' perspectives with respect to PCM in the NICU and to examine current practices of addressing it. STUDY DESIGN:: Separate questionnaires were distributed to members of the AAP Section on Perinatal-Neonatal Medicine District I and to NICU parents post discharge, to gather perspectives from each group. A χ ²-analysis and linear regression were performed. RESULTS:: Response rate was 29% for the physician survey and 63% for the parent survey. Physician respondents believed that PCM increased with decreasing gestational age (GA) and reported having fewer discussions with parents of older infants about PCM. Parental report of PCM incidence was 48% overall. PCM was not associated with GA. PCM was associated with infant length of stay and occurrence of at least one discussion about PCM with physicians. Fifty-three percent of parents reported never having a discussion regarding PCM. CONCLUSION:: Although physicians believe that PCM increases with decreasing GA, parental report suggests that PCM is not associated with GA. Parents of full-term infants in particular may experience more PCM and desire for discussion than is currently recognized.