Accepted for/Published in: JMIR Research Protocols
Date Submitted: Jan 29, 2025
Date Accepted: Jul 7, 2025
Equity for Parent Presence and Participation in Caregiving in the Neonatal Intensive Care Unit: Protocol for a Prospective Cohort Study
ABSTRACT
Background:
Parents of preterm infants 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. However, the specific barriers and facilitators of parent presence and participation (PPP) in caregiving are unknown, as are effects on infant outcomes.
Objective:
The study aims to: (1) longitudinally determine 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.
Methods:
Parents (N=375) of preterm infants born less than 32 weeks gestational age will be enrolled in a prospective cohort study. Parents will complete a daily survey documenting the amount of time spent in the NICU and caregiving activities performed. Parents will complete surveys at regular intervals during their infant’s hospitalization 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. 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 achievement of feeding milestones and length of NICU stay. 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, 4th edition.
Results:
Funding was awarded in August 2024. Data collection and analysis should be complete by July 2029.
Conclusions:
By identifying the important barriers and facilitators of PPP over the duration of preterm infants’ hospitalizations 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 to increase PPP and promote health equity for diverse families.
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