The number of preterm births (prior to 37 weeks’ gestation) and infants born at low birth weights (LBW) (<2500 g) in the United States increased for the second consecutive year after a steady 7-year rate of decline. The US preterm birth rates rose from 9.63% in 2015 to 9.84% in 2016 and the LBW rate increased from 8.07% in 2015 to 8.16% in 2016.1 These are alarming statistics since short gestation and LBW are 2 of the strongest predictors of infant mortality. The infant mortality rate is often viewed as a representative of society's overall health, and by this standard, the United States is failing compared with other developed nations.2 Sadly, there is a black-white gap that directly impacts birth outcomes. For instance, black, non-Hispanic infants have more than a 2-fold greater infant mortality rate than white, non-Hispanic infants.1,2 Likewise, the rate of very LBW (VLBW) (<1500 g) infants is more than doubled in black, non-Hispanic births (2.95%), compared with white, non-Hispanic births (1.07%), and approximately 1% of VLBW births account for more than half of the infant deaths and two-thirds of the racial gap in infant mortality.1,2
FACTORS ASSOCIATED WITH PRETERM BIRTH DISPARITIES
There is a long history of disparity in healthcare delivery, and some progress has been made in understanding the complicated issue of race, birth weight, and infant mortality; however, more research is needed to determine the exact factors that drive these disparities. Individual risk factors alone do not explain this persistent gap, just as they do not explain the disparity in preterm birth and LBW.2 The cause of racial disparity, or inequality, is multifactorial and the health disparity seen among preterm infants is likely related to health disparities seen among pregnant women as well. There is growing evidence that chronic stress associated with poverty, community factors such as crime and segregation, and exposure to racial discrimination can lead to behavioral changes including substance use; but they can also directly affect biological changes in inflammation, neuroendocrine function, and vascular function, each of which increases the risk of prematurity.2 Most concerning is the emerging literature that suggests that women of color experience discrimination, racism, and disrespect during their healthcare encounters—during their prenatal, birth, and postpartum experiences.3 Specifically, women of color perceive their prenatal healthcare experience as disrespectful and stressful coupled with inconsistent social support.
DISPARITIES IN THE NICU
Disparity in healthcare delivery extends beyond the prenatal period. In a large population-based retrospective cohort study4 in New York City, racial/ethnic disparities were explored to estimate differences in severe morbidities among very preterm infants. The study involved more than 500 000 very preterm infants (24-31 weeks’ gestation), between 2010 and 2014, who later died between 2010 and 2015. Findings suggest that black and Hispanic premature infants, compared with white non-Hispanic premature infants, had a 2- to 4-fold increased risk of 4 severe morbidities including necrotizing enterocolitis, intraventricular hemorrhage, bronchopulmonary dysplasia, and retinopathy of prematurity. The investigators conclude that racial/ethnic disparities in neonatal morbidities among very preterm infants appear to be sizable and previous research on disparities in neonatal morbidities among these infants may have been underestimated, misrepresenting the true magnitude of disparity.4 Understanding these racial/ethnic disparities is critical, as they likely contribute to inequalities in health.
In another large retrospective population-based analysis5 of more than 18 000 VLBW infants in 135 California neonatal intensive care units (NICUs), quality of care was assessed using a risk-adjusted composite and indivdual component quality score for each race and/or ethnicity. The investigators found that large racial and/or ethnic differences in care quality exist between and within NICUs. The magnitude of these differences as assessed by the Baby-MONITOR care tool varied between hospitals, with some hospitals showing high care quality in minority racial and/or ethnic patients and other NICUs showing much lower quality. In addition, these same infants also were more likely than white infants to receive poor-quality care in NICUs.5
IMPROVEMENT IN EQUITABLE NEONATAL CARE
As neonatal caregivers, we should be aware of our own biases and performance in delivering equitable quality care. While infants themselves are not necessarily the recipients of disparate care, their families are. Sigurdson and colleagues6 reported types of disparate care in the NICU and include neglectful care (eg, caregivers paying less attention to certain families—needs may not be attended to when families considered “difficult”); judgmental care (eg, caregivers overtly or subtly evaluating families’ moral status based on differences such as making fun of “black-sounding” names or a mother in recovery being labeled as a “drug mom”); and systemic barriers to care (eg, caregivers unable/unwilling to address barriers families face such as transportation, child care, and housing). As disparate care has been identified, so too has privileged care (eg, families with racial, financial, or social privilege receive better care).6 The first step to eliminating these types of disparate care is to bring awareness and recognize we all have different degrees of bias and have created, unintentionally, certain acceptable NICU norms and behaviors.
Variation in quality of care delivery across NICUs is significant and vulnerable populations are at risk for suboptimal care resulting in suboptimal outcomes.5,7 There is currently no real-time widespread comprehensive assessment to identify this problem, resulting in a lack of data to inform NICUs of their performance and opportunities for improvement. Fortunately, the California Perinatal Quality Care Collaborative (CPQCC) is developing a comprehensive Disparity Dashboard to help NICUs evaluate racial/ethnic disparities in quality of care using the Baby-MONITOR.5,8 Simultaneously, the CPQCC, in partnership with NICU families, is developing quality measures to assess the extent to which NICUs are providing equitable family-centered care, regardless of family socioeconomic status or racial/ethnic background.8 In addition, members of this collaborative have created a tip sheet for NICUs: 10 Ideas to Improve Family-Centered Care for Diverse Families. This tip sheet provides fundamental strategies to improve equitable care delivery by providing concrete strategies for acculturation of unit, NICU staff communication, organizational resources, family leadership, and more.8 Recognizing our own biases and how these disparities play out in our own units is vital to eliminating disparities and improving equitable care delivery. Engaging all families by being present, listening with intent, and providing empathy, respect, and dignity will allow us the opportunity to influence the lives of all the infants in our care from an early age and set them on the right path for future positive long-term effects.
—Joan R. Smith, PhD, RN, NNP-BC
St Louis Children's Hospital
St Louis, Missouri
1. Martin J, Hamilton B, Osterman M, Driscoll A, Drake P. Births: Final Data for 2016. Hyattsville, MD: National Center for Health Statistics; 2018.
2. Matoba N, Collins JW. Racial disparity in infant mortality. Semin Perinatol. 2017;41:354–359.
3. McLemore MR, Altman MR, Cooper N, Williams S, Rand L, Franck L. Health care experiences of pregnant, birth and postnatal women of color at risk for preterm birth. Soc Sci Med. 2018:201:127–135.
4. Janevic T, Zeitlin J, Auger N, et al Association of race/ethnicity with very preterm neonatal morbidities. JAMA Pediatr. 2018:172(11):1061–1069.
5. Profit J, Gould JB, Bennett M, et al Racial/ethnic disparity in NICU quality of care delivery. Pediatr. 2017;140(3).
6. Sigurdson K, Morton C, Mitchell B, Profit J. Disparities in NICU quality of care: a qualitative study of family and clinician accounts. J Perinatol. 2018;38(5):600–607.
7. Profit J, Zupancic JA, Gould JB, et al Correlation of neonatal intensive care unit performance across multiple measures of quality of care. JAMA Pediatr. 2013;167(1):47–54.