Families (n = 12) with infants born at <29 weeks gestation shared their experiences while in the NICU and transitioning home. Parents were interviewed 6-8 weeks after NICU discharge, including some during the acute phase of the COVID-19 pandemic. Findings regarding the parent experience in the NICU were focused around challenges navigating parent-infant separation, social isolation, communication difficulties, limited knowledge of preterm infants, mental health challenges. Parents also discussed supports that were present and supports they wished were present, as well as the impact of COVID-19 on their experiences. In the transition to home, primary experiences included the sudden nature of the transition, anxiety around discharge preparation, and the loss of the support from nursing staff. During the first few weeks at home, parents expressed joy and anxiety, particularly around feeding. The COVID-19 pandemic limited emotional, informational, and physical support to parents and resulted in limited mutual support from other parents of infants in the NICU. Parents of preterm infants in the NICU present with multiple stressors, rendering attending to parental mental health crucial. NICU staff need to address logistical barriers and familial priorities impacting communication and parent-infant bonding. Providing multiple opportunities for communication, participating in caretaking activities, and meeting other families can be important sources of support and knowledge for parents of very preterm infants.
Keywords: COVID-19; NICU; discharge; parent; patient experience; premature infant; transition.