Inequities in family engagement in the neonatal intensive care unit

Families’ engagement in NICU care facilitates holding, skin-to-skin care, and human milk feeding, which improve neonatal survival and long-term infant development. However, there are many disproportionate structural barriers faced by marginalized families when visiting the NICU. Few studies have characterized these structural barriers and evaluated how they affect infant and parental disparities and outcomes. In this project, Dr. MK Quinn, hypothesizes that parents of children in the NICU from marginalized backgrounds are less likely to have access to paid family leave, childcare, transportation, and may encounter language barriers, and that this contributes racial, ethnic, and socioeconomic disparities in preterm infant health outcomes. This hypothesis will be addressed with two specific aims. First, to understand the barriers that families face to engaging in the care of their preterm infants in mixed methods study Dr. Quinn will identify barriers through key informant interviews of low-income families with preterm infants in the NICU. This rich qualitative data of parents’ experiences will inform the development of evidenced based theory of what is driving disparities in family visitation and engagement. This will be followed by a multicenter survey of parents with preterm infants in the NICU, in order to first understand the prevalence of these barriers and investigate how these barriers are experienced by marginalized groups. Second, Dr. Quinn will conduct an observational study of the health effects of the most salient barrier to care, paid family leave. For this analysis she will investigate how the implementation of California’s paid family leave policy contributed to racial and socioeconomic disparities in preterm infant care and outcomes. The results of this study will provide the groundwork for designing policy interventions to ensure families can engage in their preterm infant’s care, and ultimately, reduce inequities and improve preterm health outcomes. The sponsor for this research is Dr. Henry Lee, a neonatologist with expertise in health services research. The cosponsor, Dr. Jochen Profit, is a neonatologist with expertise in neonatal inequities. The advisory team includes Dr. Maya Rossin-Slater, an economist with expertise in family leave policy, Dr. Suzan Carmichael, an epidemiologist with expertise in perinatal health inequities, and Dr. Christine Morton, a sociologist with expertise in perinatal qualitative research. The research in this study in concert her training plan will provide Dr. Quinn a foundation in the study of neonatal health inequities and prepare her for a career continuing this research as an independent investigator.