Parents Experiences of Racism in the Neonatal Intensive Care Unit

Abstract

Few studies have investigated parent's experiences with racism in the neonatal intensive care unit (NICU). Our objective was to explore how parents perceive their interactions with NICU staff and if/how racism in the NICU was experienced. Parents of infants receiving care in an urban NICU completed fixed choice surveys regarding their experiences and demographics, with 6 open-ended questions to elaborate on their fixed-choice responses. Using a constant comparative method informed by Constructivist Grounded Theory, we identified 3 main themes from the comments provided by 97 respondents: Care and harm coexisting, racism often manifesting as neglectful care, and the power differential is most impactful during times of parent advocacy. Parents spoke positively regarding their experiences and also reported disparate treatment attributed to their racial/ethnic identity. Racism was experienced by inappropriate comments and apathy toward parent requests, occurring during intimate interactions between staff and parents. Descriptions of parental advocacy efforts highlighted the lack of power they held in relation to the NICU staff. We recommend strengthening the focus on equity and mitigating power imbalances in the NICU.