SUPPORTING THE NICU TO HOME TRANSITION: PERSPECTIVE OF PARENTS AND PROVIDERS

Purpose: The study aimed to identify the perspectives of parents and providers in the neonatal intensive care unit (NICU), follow-up clinic, and early intervention (EI) on the supports and services infants and their families need during the transition to home after a stay in the NICU for infants born premature.

Number of Subjects: 9 NICU / clinic therapists, 8 EI providers, and 6 parents.

Methods: Six online focus groups were conducted. Two researchers coded the transcripts, and through thematic analysis identified themes and representative quotes.

Results: Six themes were identified: 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) meaningful and individualized 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.

Conclusions: Infants born preterm and their families experience a traumatic journey during the NICU stay and transition to home. The findings support the need for comprehensive, coordinated, and trauma-informed services to foster parenting efficacy and optimize children’s well-being when families transition home after a NICU stay.

Clinical Relevance: Results will inform development of innovative family-centered services to improve transition from NICU to home.