Family and Provider Experiences with Longitudinal Care Coordination for Infants with Medical Complexity

Background: Parents in the neonatal intensive care unit (NICU) report low self-confidence managing their children's ongoing medical and social needs. While bedside nurses provide critical support for families throughout their NICU admission, there may be a role for nursing coordination throughout hospitalization, discharge, and in the transition to outpatient care. Purpose: This program evaluation explores parent and provider experiences of a novel longitudinal care coordination program for infants with medical complexity from the NICU through their first year of life post-discharge. Methods: First, a sequential exploratory mixed-methods approach was used to evaluate parental experiences (n = 5 interviewed followed by n = 23 surveyed). Provider perspectives were elicited through semi-structured interviews (n = 8) and focus groups (n = 26 in 3 groups). Results: Parent-reported benefits included frequent communication and personalized support that met families' and patients' evolving needs. Care coordinators, who were trained as nurses and social workers, developed longitudinal relationships with parents. This seemed to facilitate individualized support throughout the first year of life. Providers reported that smaller caseloads were central to the success of the program. Implications for Practice and Research: This longitudinal care coordination program can be used as a translatable model in NICUs elsewhere to address the unique needs of families of infants with medical complexity throughout the first year of life. Future implementations should consider how to expand program size while maintaining individualized supports. As the care coordinators are former NICU nurses and social workers, there may be a growing role for nursing coordination of care in the neonatal population.