Supporting the NICU-to-Home Transition

Abstract: Infants born preterm are at risk of developmental disabilities, and parents are expected to manage their complex needs. The study aimed to identify the perspectives of providers and parents in the Neonatal Intensive Care Unit (NICU)/follow-up clinic and early intervention (EI) on the supports preterm infants and their families need during the transition to home after the NICU hospital stay. Nine NICU/clinic therapists, eight EI service providers, and six parents participated. Six focus groups were conducted. Six themes were identified through thematic analysis: (1) the NICU and transition to home journey is long, traumatic, overwhelming, and difficult with some positive experiences; (2) preparing families for transition from the NICU—multiple areas of focus, approaches, and people involved but limited effectiveness; (3) holistic outcomes for family are primary, but infant’s development is also essential; (4) access to services is variable and influenced by child, family, and system factors; (5) comprehensive, coordinated health and developmental services are needed but limited; and (6) EI services are designed to meet child and family individualized needs but system issues bring challenges. The findings support the need for comprehensive, trauma-informed services to foster parenting efficacy and children’s well-being during transition home.