Objectives: To describe the experience of a low-income population during the transition from the neonatal intensive care unit (NICU) to home and to compare these experiences with pediatrician perspectives.
Study design: A prospective cohort study in a Level III, 40-bed NICU at a county hospital in Northern California affiliated with seven outpatient pediatric clinics. We surveyed parents in English or Spanish at discharge (n=79) and two weeks after discharge (n=49), along with outpatient pediatricians (n=17). Parents assessed experiences with discharge and the frequency with which barriers were encountered after discharge. We compared parent experiences with pediatrician estimates on four of these barriers.
Result: Spanish survey participants had more difficulty finding a NICU doctor (P=0.05) or nurse (P=0.001) to answer their questions. After discharge, 16% of families experienced significant challenges with two or more barriers. In contrast, the majority of pediatricians estimated that 50% or more families had significant challenges with all four barriers.
Conclusion: Communication difficulties were the most commonly reported barriers during the NICU stay and physicians overestimated the frequency that families experienced challenges after discharge. Parent input is important to create effective interventions aimed at improving care and limiting disparities.