Families’ perspectives on monitoring infants’ health and development after discharge from NICUs

Based on a survey of families of very preterm infants, Seppanen et al report that: 1) parents rated post-discharge (post-NICU) care as poor or fair for 14.2% of children; 2) parents of one-third of children with health or developmental disorders rated their child’s post-hospital care as poor or fair, as compared to 12–13% of parents of typically developing and healthy children; and 3) parents’ suggestions for ways to improve post-hospital care focused primarily on better communication between the health care team and parents and better coordination of the child’s care. These findings point to a large opportunity for improving post-NICU services for infants born very preterm, especially for children with health or developmental disorders. In addition to gathering more information about families’ perspectives, vigorous quality improvement methods should be applied to improve the effectiveness of post-NICU clinics and the health and development outcomes of the infants and families served by these clinics.