Abstract
BACKGROUND: Parents of infants born preterm experience many barriers to their presence in the neonatal intensive care unit (NICU) and participation in infant caregiving. Parents from historically marginalized backgrounds or with limited social or economic resources may experience even more profound barriers, creating a significant source of health inequity for these parents and their infants. While the specific barriers and facilitators of parent presence and participation (PPP) in caregiving are unknown, PPP may be critical for improving clinical outcomes and neurodevelopment for infants born preterm. OBJECTIVE: This study aims to (1) longitudinally determine the barriers and facilitators affecting PPP specific to parents with diverse sociodemographic characteristics, (2) determine the effect of PPP on infant clinical outcomes and neurodevelopment and the potential mediating effect of parent-infant responsiveness, and (3) determine the moderation effect of PPP on the relationship between infant stress exposure and infant clinical outcomes and neurodevelopment. We hypothesize that barriers and facilitators of PPP will vary based on sociodemographic characteristics and will change over the duration of a NICU hospitalization. We expect that higher levels of PPP will be associated with better infant outcomes. METHODS: Parents (N=375) of infants born preterm, at <32 weeks' gestational age, will be enrolled in a prospective cohort study. The parents will complete a daily survey documenting the amount of time spent in the NICU and the caregiving activities performed. The parents will also complete surveys at regular intervals during their infant's admission to report barriers and facilitators of PPP, NICU-related stress, depressive symptoms, experiences of discrimination, and engagement with NICU staff. Additional data will be collected throughout each infant's hospitalization, including invasive procedures, infant clinical data, and nursing documentation of PPP. The parents will complete the maternal-infant responsiveness instrument at the time of NICU discharge and at 3 months' corrected age (CA). Infant clinical outcomes include the achievement of feeding milestones and the length of NICU stay. The infants will be assessed at 3 months' CA using the test of infant motor performance and at 12 months' CA using the Bayley scales of infant and toddler development, fourth edition. RESULTS: Funding was awarded in August 2024. Data collection and analysis are expected to be completed by July 2029. CONCLUSIONS: By identifying the important barriers and facilitators of PPP over the duration of hospitalizations of infants born preterm and differences in these factors based on sociodemographic characteristics, time- and population-targeted interventions can be developed to remove system-level barriers and enhance facilitators. These efforts may increase PPP and promote health equity for diverse families. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/71930.