Racism and Quality of Neonatal Intensive Care: Voices of Black Mothers

We conducted a qualitative study through interviews of Black mothers of preterm infants to explore participants’ perspectives of the impact of racism on quality of NICU care. In line with a grounded theory approach, we analyzed the data without preconceived theoretical ideas or hypotheses, instead allowing concept and themes to emerge during the iterative process of data collection and analysis.¹⁷ 

We recruited mothers ≥18 years old by phone after discharge, who self-identified as Black or African American, spoke English, gave birth to their infants at ≤32 weeks’ gestation, and had infants hospitalized in a single, urban, level 4 NICU in the United States (St. Louis, MO) for at least 4 weeks between 2018 and 2020. Participant self-identification as Black was an inclusion criteria because race and ethnicity are social constructs, rather than genetic or biologic categories. In this NICU, ∼30% of patients’ families identify as Black. Recruitment occurred over a 1 year period between April 2020 and April 2021. We sought to obtain a diverse range of perspectives and therefore recruited mothers with varying ages, education levels, socioeconomic statuses, and family structures. We recruited by using snowball sampling in which mothers referred other mothers and by calling mothers based on demographic data from lists of infants discharged from the NICU. We attempted to contact 134 mothers; of those, 20 agreed and 29 declined to participate in the study, and the rest could not be reached. Interviews were conducted when the infants had been home from the hospital for 6 to 18 months (median 11 months) to gain perspectives of mothers who experienced prolonged hospitalization of infant in the NICU and had fully transitioned from hospital to home. The Institutional Review Board at Washington University in St. Louis approved the study. IRB approval included access to medical records for demographic data. Informed consent was obtained from participants before interviews.

We conducted 20 in-depth, semistructured interviews through videoconference from March 2020 to May 2021. Interviews were conducted in English by a trained interviewer (M.M.), who is also the mother of a preterm infant and self-identifies as Black. We used an interview guide asking mothers about their experiences with quality of NICU care, whether the care received by the infant or family varied by race, and if they experienced or witnessed racism, framed by the shared knowledge that data shows racial disparities in health outcomes for preterm infants. We started with open-ended questions about the experience of care as a Black mother in the NICU, and the interview guide evolved as we learned from participants how to better ask about the impact of racism. Our family advocate collaborator and interviewer (M.M.) was involved in the design of the questions throughout the process, and we deferred to her expertise on both phrasing and content. Additionally, at the end of each interview, we asked mothers about the acceptability of the questions as written and asked for their feedback on changes. Interviews lasted 30 to 60 minutes and were audiotaped and transcribed verbatim. Basic demographic and health data were abstracted from the medical record and collected via a postinterview survey for the purposes of describing the participant population.

We used the analytic methodology that is associated with a grounded theory approach, including an iterative process of reviewing the data throughout the study, coding key ideas that developed into categories, concepts, and themes. Investigators met to group the codes into categories and concepts, from which the key themes and subthemes emerged directly from the data (Supplemental Table 4).^17–19  Each transcript was reviewed by investigators from diverse racial and professional backgrounds (R.E.W., M.M., B.N.C., M.R.G., J.O., N.S., S.N.L., C.E.R., and E.R.C.), with expertise in neonatology, general pediatrics, psychiatry, health disparities, social work, maternal mental health, family advocacy, and qualitative analysis. To maximize trustworthiness of the analysis, each transcript was independently reviewed by at least 2 members of the group to identify tentative codes. The group met at regular intervals to review and revise the coding structure before independently coding the transcripts and met again to assure uniform coding of each transcript. Following coding, the group met to develop themes from these codes. Any disagreement was resolved through group discussion. Data collection ended when thematic saturation was reached (no new themes identified).

Participant demographics are shown in Table 1. Themes and subthemes that emerged from the mothers’ lived experiences were in the domains of (1) Impact of Racism on Quality of NICU Care and (2) Ideas for Interventions to Improve Quality of NICU Care. An overview of these domains, associated themes and subthemes, and exemplar quotes are provided in Tables 2 and 3.

Many mothers perceived that racism led to disparate quality of NICU care. Most mothers described experiencing or witnessing racism in the NICU at multiple levels, which corresponded to the themes of (1) structural racism, (2) institutional racism, and (3) interpersonal racism.

Structural racism refers to ongoing racial inequalities maintained by society, which encompass patients and families, as well as health care providers and systems. Mothers described experiences that localized to the subthemes of: (1) being a Black person in America, (2) inequitable systemic barriers, and (3) general mistrust of health care system.

With regard to experiences with racism in the NICU being extensions of the overall experience of being a Black person in America, many mothers described navigating general stereotypes about Black people in all facets of their lives and how these shaped initial interactions between staff and Black families. Related to inequitable systemic barriers within society, some mothers noted that Black families were more likely to be impacted by issues like jobs without paid leave, limited childcare options, low socioeconomic status, and reliance on public insurance. Regarding general mistrust of the health care system, several mothers described examples of historical mistreatment of Black patients by members of the medical community, whereas others referred to the persistence of false ideas about biological determinism among health care providers perpetuated through education and training. For example, 1 mother talked about “wimpy White boy syndrome” and her concerns that this may cause health care providers to be less attentive to her infant, and a second mother confirmed that she had heard about this concept from a health care provider.²⁰ 

Institutional racism refers to discriminatory policies and practices within organizations and institutions, such as NICUs and hospital systems. Mothers described experiences that localized to the subthemes of: (1) lack of Black representation, (2) poor reputation of NICU or hospital system, and (3) differences in resource or assistance allocation and rule enforcement.

Many mothers commented on the lack of Black representation within the NICU and hospital system, particularly in positions of power and influence like doctors and nurses and pointed out that the workforce was not reflective of the racial demographics of the surrounding community. Some directly linked this lack of racial concordance with providers to experiences with racism in the NICU and concerns that their infant and family would be mistreated. Several mothers shared experiences with or concerns about racism in the NICU as resulting from the poor reputation of the NICU or hospital system among members of the local Black community, with specific references to medical experimentation and suboptimal care explicitly based on race. Some mothers attributed experiences with racism in the NICU to differences in resource or assistance allocation and rule enforcement, with preferential treatment provided to White over Black families. Resources or assistance included distribution of breastfeeding mothers’ meal vouchers and other food assistance, transportation vouchers, and housing assistance. Rules of conduct included security practices and visitor policies.

Interpersonal racism refers to biases and bigotry shown between one or more individuals, through words and action, such as between Black families and patient-facing staff associated with the NICU. Examples of disparate care detailed in these experiences were similar to those included under Systematic Racism or Institutional Racism, but mothers recalled specific individuals involved. Mothers described experiences that localized to the subthemes of: (1) neglectful and/or judgmental treatment, (2) hierarchical flow of information, and (3) power imbalance.

Related to neglectful and/or judgmental treatment, some mothers perceived that their infants and families received less attention and care, and staff interacted with them based on stereotypes about Black people. Regarding hierarchical flow of information from staff to families, with health care providers as “gatekeepers” to when and how much knowledge to share. Several remarked that they were unheard, disbelieved, or even silenced. Some mothers spoke about experiences with racism in the NICU that resulted from a power imbalance between Black families and White staff. They described feeling unable to fully express their opinions because of their concern or based on prior experiences that their own words or actions could lead to retribution from staff directed at their infants or families.

Mothers believed that changes across the levels of health care system would decrease racism and improve quality of NICU care for Black families. Mothers described existing or suggested new structures and processes that did or would provide more equitable care. These examples corresponded to the themes of (1) increased Black representation, (2) increased peer support, and (3) improved staff education and training.

Increased Black representation throughout NICU and hospital staff, particularly in positions of power and influence, was identified by mothers as a critical change. Mothers were more likely to have experienced or perceived improved quality of NICU care when there was racial concordance with staff. Mothers shared experiences and recommendations that localized to the subthemes of: (1) shared experience of being Black, (2) bidirectional communication, (3) personalized care.

Many mothers described the shared experience of being Black with staff as being critical to increasing their trust and comfort in the NICU. They shared how meaningful it was to feel implicitly understood and believed by Black staff, and that Black staff were stronger advocates for their needs. Several mothers shared experiences with and recommendations for improved care in the NICU that were based on consistent bidirectional communication with Black families. They believed that they were more likely to be provided all relevant information regarding their infant’s medical course and involved in shared decision-making. Some mothers described experiences that resulted from more personalized care of Black families by Black staff. Many mothers describe Black staff as “warm,” “compassionate,” and “loving,” as well as note their attentiveness toward their infants and families.

Increased peer support was also frequently discussed by mothers as a way to improve care. Many mothers appreciated opportunities to meet and form relationships with other NICU parents, both those with infants currently hospitalized and unit-based family advocates (Family Partners). Forums for these meetings included shared accommodations, like the Ronald McDonald House and mothers’ luncheons. Mothers shared experiences and recommendations that localized to the subthemes of: (1) shared experience of being NICU parents, (2) support from family advocates, and (3) strengthened connection with Black parents.

With regards to the shared experience of being NICU parents, many mothers derived benefit both from hearing about other parents’ experiences and sharing their own, which made them feel less alone. They explained that talking to other parents of any race provided a unique and important dimension to understanding their NICU journey that health care providers could not. Several mothers described experiences with improved care in the NICU that they attributed to support from family advocates (Family Partners), who were critical to helping families to form relationships with other NICU parents and navigate both the medical and social aspects of the NICU. A few mothers described experiences, both with other NICU parents and family advocates, in which they believed there was a strengthened connection with Black parents where they felt implicitly understood by other Black NICU parents.

Improved staff education and training opportunities for all staff in the NICU were identified by mothers to improve care. Mothers described many positive experiences in which staff, regardless of race, provided high quality care. Mothers shared experiences and recommendations that localized to the subthemes of: (1) communication and engagement strategies, (2) empathetic care, and (3) responsiveness to specific needs of Black families.

Related to communication and engagement strategies used by staff, many mothers appreciated bidirectional communication and openness to their engagement in infant care in the NICU. Related to empathetic care by staff, mothers appreciated staff who showed interest in their lives and compassion toward all families. Related to responsiveness to specific needs of Black families by staff, mothers suggested interventions including breastfeeding education that addresses barriers unique to Black women, Black infant skin and hair care, and staff openly addressing concerns that Black parents likely have related to mistrust of the health care system early in NICU hospitalization.

In this study, we sought to understand Black mothers’ perspectives of the impact of racism on quality of care for Black preterm infants in the NICU and what might be done to address it. We found that the majority of Black mothers we interviewed believed that racism impacted the quality of NICU care and described examples of racism in the NICU at structural, institutional, and interpersonal levels. Mothers also provided ideas for interventions that would decrease racism and improve quality of NICU care for Black families, including increased Black representation, increased peer support, and improved staff education and training.

The finding of racism in the NICU as described by Black mothers is consistent with prior studies that have found racism in other clinical settings.^21–26  Recent papers have further expounded on the role and responsibility of health care systems to address racism.^27–30  Dr C.P. Jones originally developed the theoretical framework highlighting the different levels of racism that exist in our society.³¹  This framework has since been widely used in medical research and practice, including in The American Academy of Pediatrics policy statement The Impact of Racism on Child and Adolescent Health, which acknowledged the role of racism in child and adolescent health and called for proactively engaging in strategies across these levels to improve the health of children and their families.³²  We similarly found that our participants described racism at these levels. We have shown that this framework is applicable to racism in the NICU, and thus, can be used to guide the development of ways to measure the impact of racism on neonatal health care delivery and to design targeted interventions.

Several of the interventions suggested by mothers to address racism and thus, to improve the quality of NICU care have been shown to be effective in other settings. For example, interactions with racially concordant healthcare providers have been associated with higher patient satisfaction and increased participatory decision making.^33–36  Although these prior studies have differed in the degree to which provider attitudes, experiences, and communication patterns mediate this relationship, they have agreed that increasing Black representation among health care providers is likely the most direct strategy to improving health care experiences for Black patients. Peer support, another intervention recommended by mothers, has been found to be a unique and useful means to support parents.^37,38  Although still limited in the context of health care, more general literature on peer support and race also shows that Black women want and need peer support when managing experiences of racism.^39–41  Finally, improved staff education and training have been shown to be most effective in reducing racial disparities when they recognize and address the impact of racism on patient-provider relationships, as proposed by mothers in our study.^42–47  We have shown that these potential interventions are acceptable to the mothers we interviewed, since they proposed them, and likely feasible based on their use and study in other areas of health care.

We have expanded upon the groundwork laid by prior qualitative studies that have shared accounts of differential quality of NICU care toward families, suggesting the lack of equitable patient- and family-centered care, particularly for families of color and/or low socioeconomic status.^15,16  In a recent paper on antiracism in the field of neonatology, the authors pointed out that “neonatal researchers should ensure that conceptual frameworks are… informed by the… lived experiences of people of color” to examine currently “unanswered questions regarding the impact of racism… in the NICU, and… evaluate best practices or interventions for how to dismantle”⁴⁸ . Our study adds to the literature by exclusively focusing on Black mothers from a diverse range of backgrounds and their perspectives about the impact of racism on quality of care for Black preterm infants in the NICU and what might be done to address it. Our study suggests that being Black, regardless of other intersecting parts of identity, makes families vulnerable to the impact of racism on quality of NICU care. Our study also adds evidence to this growing body of literature that addressing racial disparities in quality of NICU care must first be grounded by the voices of Black people whose experiences and insights are fundamental to enacting effective change.^49–52 

This study was limited by its inclusion of a single site. We recognize that results may have differed if mothers from other parts of the United States, other countries of birth, and all levels of NICUs were included. Additionally, we did not include Black fathers in the study who would lend important and potentially impactful perspectives. Despite these limitations, this study provided access to the perspectives of Black mothers of preterm infants from a diverse range of backgrounds and directly examined the impact of racism on quality of care in the NICU. These findings should be used to develop further qualitative studies examining the unique experiences of other racialized groups, such as Black fathers and nonbirth parents, as well as other vulnerable racial or ethnic groups.

Black mothers of preterm infants experienced racism during NICU hospitalization that impacted the quality of care they received. Interventional studies directed toward mitigating these racial disparities may focus on addressing racism during the NICU period and should include input from Black stakeholders at all stages of design, implementation, and analysis.

We thank the mothers who generously shared their time and stories with us.

NICU

Neonatal intensive care unit