O2055: Family Perceptions of Health Disparities in the NICU: A Qualitative Study

Background: Addressing infant health disparities based on race, ethnicity, and socioeconomic status has been a longtime policy priority; however, morbidity and mortality in the neonatal intensive care unit (NICU) remain higher in some populations than others. The reasons for these disparities are poorly understood. The objective of this study is to explore families’ perspectives on disparities in health outcomes within the NICU and potential mechanisms underlying these disparities.

Methods: This qualitative study was conducted in one level IV NICU. We performed semi-structured key informant interviews with recently discharged families. Families with an infant who had received care in the NICU for at least 7 days and whose primary language was English or Spanish were eligible; families were excluded if the infant was not discharged in the family member’s custody. We used purposive sampling to ensure at least 50% of families self-reported as racial/ethnic minorities. Interviews were recorded, transcribed, and de-identified. Raw narrative data were systematically analyzed by at least two investigators using a modified grounded theory approach. A coding scheme was developed, and thematic analysis methods were used to identify emerging themes. Differences were resolved through consensus.

Results: 23 families completed semi-structured interviews. Of the caregivers, the majority were mothers (96%), had a mean age of 32 years, and preferred English as their primary language (85%); 22% completed some college. Of the infants, half were female; the majority identified as Black or Hispanic (57%) and had Medicaid (65%) (Table 2). We identified several emerging themes (Table 3): (1) Families perceive that biases, such as race/ethnicity and insurance coverage, may affect health disparities; (2) Providers can play a direct role in healthcare disparities; (3) Bi-directional communication is crucial for good health care, including parent advocacy, communication with the care team, parents’ perception of voice, and parent inclusion in medical decision making; and (4) Families propose solutions to improve NICU care, such as communication strategies and the provision of culturally effective care/education.

Conclusion: For NICUs caring for large racial/ethnic minority populations, it is crucial to incorporate family experiences when developing plans to provide effective care. This qualitative evaluation of families in a NICU setting demonstrated the perceived role that healthcare providers play in NICU disparities and the importance of communication amongst care teams and families. Families proposed many potential mechanisms for disparities in NICU outcomes. Future studies should test these potential mechanisms to develop quality improvement initiatives that mitigate disparities.