Unequal Care: Racial/Ethnic Disparities in Neonatal Intensive Care Delivery

Abstract

Advances in neonatal intensive care have improved outcomes for preterm newborns, but significant racial/ethnic disparities persist. Neonatal disparities have their origin in a complex set of factors that include systemic racism and structural disadvantages endured by minority families, but differential quality of care in the neonatal intensive care unit (NICU) remains an important and modifiable source of disparity. NICU care has been shown to be segregated and unequal: Black and Hispanic infants are more likely to be cared for in lower quality NICUs and may receive worse care within a NICU. To eliminate disparities in care and outcomes, it is important to identify and address the mechanisms that lead to lower quality care for minority preterm infants. In this review, we identify improvements in both technical (clinical) and relational (engaging and supporting families) processes of care as critical to better outcomes for minority infants and families.

Introduction

Racial/ethnic disparities in newborn health have persisted for decades. Preterm infants requiring care in the neonatal intensive care unit (NICU) are a particularly vulnerable population. Compared to white infants, Black infants are twice as likely to be born preterm,¹ and more likely to experience serious complications when delivered preterm.^2-5 Preterm infants with very low-birth-weight (VLBW) account for 70% of neonatal deaths and are predominantly Black.⁶ Disparities in neonatal outcomes are also elevated among other racial/ethnic groups including Hispanic, American Indian, and Puerto Ricans.^7,8 The potential long-term consequences of these disparities are profound: elevated risks of morbidity, adverse neurodevelopmental outcomes and behavioral deficits that influence health and quality of life over the life course, disadvantage preterm infants from birth, and place enormous stresses on their families.⁹

The fundamental sources of these disparities are systemic racism, discrimination, and societal structures that confer disadvantage to minority populations.^10,11 To mitigate and ultimately eliminate these disparities, we need to acknowledge their root causes but also understand the mechanisms through which racism and structural disadvantage translate to disparities in neonatal outcomes. Such an inquiry will help identify specific areas of action to direct energies and resources. In this article, we focus attention on disparities related to neonatal intensive care delivery, because NICU care is a highly effective intervention¹² and better NICU care has the potential to mitigate social disadvantage and improve outcomes for vulnerable infants and their families.

Disparities in Neonatal Care Delivery

Neonatal intensive care delivery has been shown to be both segregated and unequal.^13,14 Black and Hispanic infants are at risk of receiving care at lower quality NICUs¹⁵ and worse care within a NICU.¹³ In a population-level study of 134 NICUs in California, we found substantial differences in care quality received by Black and Hispanic VLBW infants.¹³ Using a national data set that includes nearly 90% of VLBW and very preterm infants, Horbar and colleagues¹⁴ found racial/ethnic segregation across NICUs in United States and regional variation in quality of care. Howell et.al.² have shown that in New York city, site of care explains more than a third of the Black-white and Hispanic-white outcome differences offering a very stark illustration that minority populations receive care in a concentrated set of NICUs that provide lower quality care.

Mechanisms of Disparity Creation

Mechanisms that generate disparities in health outcomes are differential underlying risk status and differential access to an effective intervention.¹⁶ As a result of socioeconomic disadvantage and systemic racism, both elevated risk and lack of access exist together in minority populations. We know that Black and Hispanic infants are more likely to be born preterm (elevated risk) and to be cared for in lower quality NICUs (access). Because neonatal intensive care is a highly effective intervention, differential access or lack of access to high-quality NICU care remains an important and modifiable source of disparity. To eliminate disparities in care and outcomes, it is important to understand why Black and Hispanic preterm infants are more likely to be cared for in lower-quality NICUs and the underlying reasons for performance deficits in predominantly minority-serving institutions. Reasons for segregation of minority infants into lower quality NICUs are not fully understood although patterns of residential segregation, systemic racism, poverty, and health care access related factors such as health insurance are potential drivers.^17,18 Neighborhoods in which minority families live constrain their choice of where they seek care.^11,19,20 Inability to access high-quality care has to be understood in the context of racial and economic segregation: Howell and colleagues found that in New York, women in racially and economically polarized neighborhoods were likely to deliver in hospitals located in similarly polarized neighborhoods.²¹ New York may be a particularly stark example of minority preterm infants being cared for in a concentrated set of hospitals which provide lower-quality care. The underlying patterns of residential segregation , the choice of a particular NICU and ultimately the quality of care received by minority infants may vary in different regions of the country potentially reflecting local patterns of racial and economic polarization with potentially concomitant effects on choice, access and quality of health care delivery.¹⁴ Similarly, the reasons for performance deficits in predominantly minority-serving NICUs need to be fully explored. NICUs that care for low-income and minority populations may face unique organizational challenges and resource constraints. Studies have shown that VLBW infants born in NICUs that have higher proportion of minority patients had structural deficits such as nurse understaffing and worse practice environments for nurses^22,23 that contribute to disparities in care.

Disparities in care by race and ethnicity within a given NICU^13,24 remains a very troubling finding that needs to be carefully investigated. Studies have shown that minority infants are less likely to receive recommended care and that minority families face adverse interactions with providers, that are driven by stereotyping and failures in communication.^24,25 Sigurdson and co-authors²⁴ describe deficits in care experienced by minority families in the NICU including neglectful care, judgmental care, and systemic barriers to care. In a study of diverse NICU families, Glazer et.al.²⁵ report that while descriptions of explicit discrimination were rare, disrespectful care as well as poor and ineffective communication directed towards Black and Hispanic mothers were barriers to family engagement in the care of the infant. Poor communication and inadequate engagement not only create anxiety and stress for families, but also affect care processes in the NICU critical to infant development such as skin-to-skin care and breast feeding. Minority families also face disadvantages related to language barriers, inadequate translation services, and constraints such as lack of transportation, or work-related barriers that prevent regular bedside presence in the NICU.

Evidence suggests that minority families receive less family centered care, but the degree to which racism, and overt bias contributes to deficits in processes of care for minority infants in the NICU needs additional exploration. The specific processes that contribute to disparities in care need careful study, in part, because health services delivery varies widely across the country, as do the needs and challenges faced by minority families and communities. To some extent, granular understanding of mechanisms of disparity creation is limited by the quality measures currently available. Current measures of quality address critical clinical domains, and provide valuable information on disparities, but they only highlight the end result of care delivery. Routinely used measures of quality do not shed light on processes that lead to disparity creation. In particular, interpersonal racism, bias, and other relational processes such as communication, remain difficult constructs to measure. Surveys of parents provide some information on the experience of care, but they are difficult to do on a routine basis and remain a less than perfect solution. Carefully constructed measures of family centered care¹⁸ can help bridge the gap in the measurement infrastructure by assessing important domains such as family engagement and participation in the care of the infant.

Disparity Solutions

To eliminate disparities in NICU care, we need to address deficits in technical processes of care as well as relational processes (communication, family engagement). We make the distinction between technical and relational processes, not to identify two mutually exclusive arenas of intervention, but to emphasize that both are relevant and necessary. For example, efforts focused on improving relational aspects through education, language concordant care and anti-bias training may help, but they are not sufficient unless such efforts are followed up by specific changes in care processes that better reflect the underlying reasons for disparities and the needs of minority families. The degree of emphasis on improving technical and relational aspects of care will likely vary by the deficits being addressed. We illustrate this with two specific examples:

Healthcare Associated Infection (HAI):

HAI is a serious complication among VLBW infants that is associated with greater length of stay, neurodevelopmental impairment, and mortality.²⁶ Minority infants have been shown to be differentially affected by HAI because they receive care in challenged hospitals which provide lower quality of care.²⁷,²⁸ In a population-based cohort study of VLBW infants in California, Liu and colleagues²⁸ found increased infection rates in NICUs that serve minority populations. Although improving relational processes of care, such as provider interactions with families remains important, reducing disparities in HAI requires rigorous focus on improving technical processes of care through sustained quality improvement efforts.²⁹

Breast milk at discharge:

Mother’s own breast milk plays a critical role in mitigating the adverse consequences of preterm birth. Breast milk at discharge is a key measure of the quality of NICU care because it confers numerous health benefits, including reduction in chronic lung disease, necrotizing enterocolitis, blood stream infections, and improvement in neurodevelopmental outcomes.^30-33 Disparities in use of mother’s milk are well recognized, with Black and Hispanic mothers less likely than white mothers to provide mother’s milk for their VLBW infants.³⁴ Hospital practices such as prenatal education on human milk benefits, assistance with early milk expression, early professional lactation support, and skin-to-skin care can help improve breast feeding rates, but the delivery of these practices has been shown to vary by race/ethnicity.³⁵ Improvement efforts have helped increase breast milk initiation rates among minorities, but challenges remain in sustaining these rates throughout the NICU stay and beyond.^34,36 For example, a state-wide quality improvement collaborative in Massachusetts³⁷ focused on reducing racial/ethnic disparities in breast milk use was successful in improving breast milk initiation rates, but disparities emerged after a month of NICU stay. These disparities were attributed to multiple challenges faced by minority families: language barriers, family visitation policies, transportation and parking costs, as well as work-related barriers that impeded maternal NICU visitation and ongoing pumping. This suggests that reducing disparities in breast milk use requires a multipronged approach: education, effective engagement and partnership with families, addressing language barriers and providing supportive services sensitive to the life experiences and work-related barriers faced by minority families. Sustaining improvements beyond the NICU might require coalitions with community partners and programs such as Special Supplemental Nutrition Program for Women, Infants, and Children (WIC). Reducing disparities in breast milk use requires emphasis on hospital practices to support mothers as well as relational processes of communication, education, and better understanding of the needs and barriers faced by minority families

Disparity Solutions: Charting the Path Ahead

Disparities in neonatal outcomes are rooted in a complex set of biological, social, and health care related factors. However, the complexity of underlying causes does not constitute an insurmountable barrier to solutions. Targeted improvement actions in the NICU have the potential to ameliorate these disparities. The NICU setting where infants are treated over time periods that can last up to months offers providers multiple opportunities to interact and partner with families to reduce disparities in care and outcomes. Horbar and colleagues³⁸ have identified 62 potentially better practices that providers and NICU teams can implement to meet the medical and social needs of infants and families. Measuring disparities, identifying deficits in performance, and undertaking specific improvements in technical as well the relational processes of provider interaction with families constitute elements of a multipronged strategy to address racial/ethnic disparities. A structured, systems-focused approach³⁹ to reduce racial/ethnic disparities through improved readiness, recognition, and response to the needs of minority families reinforced by continuous systems learning is delineated in Table 1.

Table 1.

Structured, system-focused approach to reducing racial/ethnic disparities in neonatal intensive care delivery through improved readiness, recognition and response to the needs of minority families that is reinforced by continuous systems learning.

Domain	Key Strategies
I. Readiness	1. Organizational acculturation to address the needs of diverse population served by the NICU 2. Signage and educational materials in multiple languages 3. Availability of family advisory council 4. Availability and ready access to professional translation services
II. Recognition	5. Professional and standardized assessment of social determinants of health 6. Psychosocial support and counseling available to address needs of vulnerable families 7. Support for transportation, parking, food, child care for siblings
III. Response	8. Implement quality improvement activities that target disparities 9. Cultural sensitivity, language concordance, anti-bias training 10. Family centered or family-integrated care 11. Peer-to-peer support programs
IV. Systems Learning	12. Audit and feedback of quality measures that explicitly track racial/ethnic disparities 13. Disparities dashboard for routine monitoring of racial/ethnic disparities in both process and outcome measures 14. Partner with community-based organizations to identify and address key barriers and challenges faced by minority families

To be effective, disparity solutions need to be tailored to the specific context of individual NICUs with careful attention to the circumstances of infants and families served. While it is not possible to recommend a prescriptive or universal set of solutions that would work for all NICUs, we highlight strategies that can serve as a roadmap to reduce disparities.

Assess and address social risk:

To engage in effective partnerships with families, NICU providers need to understand the needs and circumstances of the families served by their institution. The catchment area characteristics of the NICU and social factors data provide key contextual information on social determinants of health challenges families face prior, during, and after their infant’s NICU stay.⁴⁰ Studies have shown that neighborhood characteristics including racial residential segregation, income inequality, greenspace, socioeconomic status, and built environment are associated with birth outcomes.^41-43 These features of the social and built environment add to the challenges families face in the form of stress, language and transportation barriers, and lack of availability or access to community resources. NICU policies, procedures, and available supportive services such as translators and social workers should reflect the needs of communities served.

Measure disparities in NICU care delivery:

Risk-adjusted measures of disparity that include both process and outcome measures are critical to addressing disparities in the NICU because they highlight areas of concern and provide a starting point for improvement action. At the network level, disparities in quality of care between NICUs can be assessed using global measures of quality such as the Baby-MONITOR.^13,44 The Baby-MONITOR is a global measure includes 9 risk-adjusted infant-level process and outcome measures (e.g. health care associated infections, human milk on discharge, mortality). Disparities within a NICU can be identified by evaluating racial/ethnic differences in performance across key process and outcome measures. Through its health equity dashboard⁴⁰, the California Perinatal Quality Care Collaborative(CPQCC), a population-based statewide quality improvement network, enables individual NICUs to assess their own performance of different racial/ethnic groups on key measures of quality. Measurement of disparities can help guide improvement action: If disparities in a NICU are limited to a specific process or outcome measure, focused improvement activities can be used to remedy the situation. If minority infants perform poorly across a range of process and outcome measures, then the question of systemic racism needs to be raised and confronted. Explicitly tracking racial/ethnic disparities in quality of care not only identifies specific areas of action but also brings equity to the forefront as a core component of high-quality care.

Implement quality improvement strategies to reduce disparities:

Quality improvement (QI) offers a flexible set of tools to measure, analyze, and reduce disparities in care delivery by introducing small changes, testing them and ultimately spreading effective changes. The strength of QI approaches to reducing disparities in the NICU is the iterative process of testing and evaluating change that is supported by measurement. The QI methodology supports the process of identifying specific areas of disparity, investigating underlying causes and developing solutions that are sensitive to the local context. This is particularly helpful because there are currently no universally recommended, evidence-based solutions to reduce disparities. To reduce disparities within a NICU, it is critical that minority families are included as active collaborators in QI efforts. Concerted efforts need to be made to reduce obstacles, such as transportation or language barriers, that would hinder participation of diverse families in improvement efforts.

QI approaches can also be used to address disparities between NICUs. Multiple NICUs can be brought together through quality improvement collaboratives (QICs) to address drivers of disparities in care. Participation of safety net NICUs that predominantly care for poor and minority populations in QICs is a viable mechanism to promote quality capacity and peer learning. State health departments and regional QI organizations can provide incentives to predominantly minority serving institutions to enable them to overcome resource constraints and take advantage of peer learning opportunities offered by QICs.

Provide family centered care:

Complex medical interventions delivered by multiple specialties and sub-specialties are central to care delivered in the NICU, but the ultimate success of these efforts rests on family engagement in care and effective integration of the infant into the family unit. Families need to be supported to overcome the stress and trauma associated with the admission of the infant in the NICU, to engage in the care and feeding of the infant, and to assume care-giving responsibilities post-discharge. These goals can only be accomplished with strong partnership between providers and families, that are supported by communication, trust, and cultural sensitivity. Minority families face multiple barriers to engaging in collaborative partnerships with providers: systemic racism, stereotyping, language barriers, and inadequate attention to social determinants of health all play a role. Research has highlighted the benefits of patient–physician racial concordance on outcomes of care for underrepresented minorities. For example, adverse clinical outcomes for Black newborns treated by Black physicians are halved compared with the outcomes Black newborns experience when cared for by white physicians.⁴⁵ Studies on racial and language concordance⁴⁶ not only reveal gaps in care but also emphasize a larger issue: providers need to work with families to listen to their concerns and establish relationships of trust that respect the needs of minority families and their life experiences. Structures within a NICU such as family advisory councils can be a forum to elicit input from minority families on NICU policies and procedures and ways to change those policies to address needs of minority families. We have developed a health equity tip sheet consisting of suggestions that NICUs can use to improve family centered care for diverse families.⁴⁷

Engage external stakeholders:

Partnerships between providers and families in the NICU are central to disparity reduction, but sustained efforts to improve outcomes requires a broader range of actors. State agencies, payers, health systems, high-risk infant follow up programs, and community-based agencies are some of the partners whose energies and resources need to be engaged to reduce disparities and address the needs of preterm infants and their families. Payers should recognize disparity reduction as an explicit goal and create financial incentives for providers and health systems to implement programs to reduce disparities.

Summary

Disadvantages that accrue to fetuses of mothers subject to adverse pregnancy conditions and exposure to racism are exacerbated by poor quality NICU care. Improving quality of neonatal intensive care delivery with particular focus on minority infants and families is a viable strategy to address persistent disparities in care and outcomes. The NICU can be the locus of activities that brings together providers, families, payers, state agencies, and local communities to undertake concerted actions to improve outcomes for minority infants and families. Effective partnerships between providers and minority families are key to improving outcomes of care.