Obstetric Experiences of Young Black Mothers: An Intersectional Perspective

Abstract

Background:

In Chicago, maternal morbidity and mortality is six times more likely among Black birthing people than white, despite policy initiatives to promote maternal health equity. Disparities in maternal morbidity and mortality reflect experiences of structural inequities – including limited quality obstetric care, implicit bias, and racism resulting patient mistrust in the health care system, inadequate social support, and financial insecurity. Although there is published literature on Black women’s experiences with obstetric care, including experiences with individual and structural racism, little is known about the intersection of age and race and experiences with health care. The purpose of this study was to explore the maternal health and pregnancy experiences of young Black women utilizing an intersectional theoretical lens.

Methods:

In this study, we conducted two focus groups in a sample of 11 young Black pregnant people. We conducted a thematic analysis to identify codes, themes, and subthemes of the data.

Results:

We developed two overarching themes: obstetric racism and obstetric resistance. To elucidate how obstetric racism framed our participants’ healthcare experiences, we identified sub-themes: intersectional identities as young Black women, medical mistrust, and pregnancy trauma. The second major theme describes ways in which participants protected themselves against obstetric racism to engender positive health experiences. These methods of resistance included identifying advocates and relying on trusted providers.

Conclusions:

The current standard of obstetric care in the US is suboptimal due to individual and structural racism. This study provides unique data on the experiences with health care for young, Black pregnant individuals and delivers valuable insight into how individual and structural racism impacts obstetric care for young Black women.

Introduction

National maternal mortality rates are four times higher for Black women than white women (Callaghan, 2012); in Chicago, they are six times higher and many of these deaths are preventable (Geller et al., 2014). These disparities persist regardless of age, income, and education. Black women experience more severe maternal morbidity and life-threatening complications that are caused or exacerbated by pregnancy (Geller et al., 2014). Research shows higher exposures to structural and individual racism associated with adverse maternal and birth outcomes among Black women (Dove-Medows et al., 2020). Individual racism refers to one’s racist assumptions, beliefs, or behaviors and is a form of racial discrimination that stems from personal prejudice (Tator et al., 2006). Individual racism is learned from broader socio-economic histories and processes, which are reinforced by systemic racism.

Patients’ perception of differential allocation or quality of services based on their race or ethnicity is an important factor in healthcare quality (Janevic et al., 2020). Black women report being treated poorly, receiving differential treatment and communication during their birth experiences, and attribute that poor treatment to provider communication and racism (Altman et al., 2020; McLemore et al., 2018). One study found that women perceived the racial or ethnic identity assigned to them by their providers influenced the treatment that they received in childbirth (Janevic et al., 2020). Reports of not being heard, ignored, not listened to, and not having their preferences considered are documented in the literature (Altman et al., 2020; McLemore et al., 2018; Slaughter-Acey et al., 2019).

Increasing attention has been placed on individual and structural racism and its impact on health, however, less is known about the intersectional experiences of Black women’s age, race, and prenatal care. The intersection of age and race is important in other fields (i.e., public health, criminology, sociology, and psychology) as Black communities experience disproportionate health disparities (Ross, 2017; Sun et al., 2018). Black offenders receive harsher sentences (Steffensmeier et al., 2017) and screeners for employment spend less time on younger Black applicants’ resumes (Lahey & Oxley) compared to their white counterparts. This intersection of age and race may also be important in the obstetric care of Black women. In particular, rates of mistreatment among women of color who were young, nulliparous, or primiparous, or had low socioeconomic status, social risk factors, or pregnancy complications were higher than white women (Vedam et al., 2019). It has been reported that Black women experience racialized pregnancy stigma every day in the form of stereotypes that stigmatize Black motherhood and have negative implications on women and their infants (Mehra et al., 2020). These intersectional identities are often the basis upon which many young Black women’s pregnancies are classified as “high risk,” a classification that is associated with higher rates of intervention and harmful treatment (Diaz-Tello, 2016; Sadler et al., 2016). This convergence of obstetric violence and medical racism results in what Davis called “obstetric racism” (Davis, 2019). Although other studies have examined the experiences of Black pregnant people and their interactions with healthcare (Altman et al., 2020; Chambers et al., 2020; McLemore et al., 2018), there is a paucity of literature focusing on the intersectional experiences of young Black women, specifically related to their interactions with health care providers and the health care system during pregnancy resulting in trauma. Even fewer studies exist that describe ways in which mothers with intersectional identities resist or protect themselves against the known threats of obstetric racism (Hill & Castaned, 2022). Therefore, the purpose of this study was to explore the maternal health experiences of a group of young Black women receiving support services utilizing an intersectional theoretical lens.

Theoretical Framework

We utilized intersectionality as a theoretical framework to inform our analysis of Black maternal health inequities. Intersectionality is a theory, paradigm, and research method (Collins, 2004) that recognizes the complexity of how multiple and simultaneous social identities (i.e., race, gender, and class) confer privilege and power (Crenshaw, 1989; Crooks et al., 2021). Intersectionality is highly applicable to health research, particularly concerning inequities and experiences of people with multiple disadvantaged identities (Bauer, 2014; L. Bowleg, 2012; Crooks et al., 2020; Sun et al., 2018). Intersectionality is rooted in Black feminist scholarship and historically the main focus has been experiences of Black women (Crenshaw, 1989), making it ideal for our study. Additionally, intersectionality provides voice and power to the unique experiences of Black women as experts of their own lives (Crooks et al., 2021). The combination of multiple disadvantaged identities and social positions (such as power and privilege resulting in oppression, discrimination, and adverse health outcomes) are crucial in understanding Black maternal health. Intersectionality has been used previously to explore maternal health issues, including exploration of the unique experience of gendered racism and pregnancy (Ross, 2017) and how maternal life events shape birth outcomes at the intersection of race and income (Koning & Ehrenthal, 2019).

Methods

Participants

We recruited pregnant women who were receiving services at New Moms, a non-profit community organization that provides transitional housing, 16-week job-training program, and family support as well as services including perinatal education, home visiting, and parenting education. New Moms is located in the Austin neighborhood of Chicago, which is the largest geographical and populated community, with a high prevalence of Black inhabitants, a dearth of resources, and is among the highest rates of adverse maternal-infant health outcomes in the city (Bocskay, 2007). New Moms partners with young mothers and their children to affirm young families’ innate skills and strengths to engage them and partner together for long-term success to combat systemic barriers. We approached pregnant women who were attending prenatal care classes between March 2019-June 2019. Participants were introduced to the study, and those interested consented. Study procedures and materials were approved by the University of Illinois Chicago Institutional Review Board (# 2016-0662). Demographic data were collected by NewMoms for those individuals accessing housing and other coaching. Our sample is 11 pregnant Black women between 18 and 24 years old. Several participants had prior pregnancies. Although participants all identified as single, many spoke of their support systems in terms of partners. See Table 1 for participant demographics. The sample was divided into two focus groups, one containing five participants and the other containing six.

Table 1.

Demographics

Participant	Age	Race	Ethnicity	Marital status	Income	Employed	Education
Miss A	23	Black	Not Hispanic	Single	$520/month	Not employed	High school
Miss B	23	Black	Not Hispanic	Single	none	Not employed	High school
Miss C	22	Black	Not Hispanic	Single	$16/hour	Full time	Some college
Miss D	25	Black	Not Hispanic	Single	$15/hour	Full time	High school
Miss E	22	Black	Not Hispanic	Single	$620/month	Full time	High school
Miss F	22	Black	Not Hispanic	Single	$2,250/month	Full time	Some college
Miss G	20	Black	Not Hispanic	Single	none	Not employed	High school
Miss H	21	Black	Not Hispanic	Single	$12.50/hour	30 hours/week	High school
Miss I	19	Black	Not Hispanic	Single	$14/hour	40 hours/week	High school

Note: No data on 010 and 011 because they attended prenatal class only.

Data collection

We conducted two focus groups lasting 60-90 minutes. Focus groups took place in a room within the New Moms facilities. All focus groups were facilitated by NOH who identifies as a Black cis-gender woman, has extensive experience conducting focus groups, and had no prior relationship with the participants. We asked questions related to their experiences of stress during pregnancy and prenatal and intrapartum experiences with health care providers and the health care system. Questions included “What does stress mean to you?”, “What type of experiences in your life cause stress?”, “What stresses you out day to day?”, “How do you feel stress affects your health?”, “What resources do you feel you need to eliminate some of these stressors?”, and “What types of things do you do to alleviate these stressors?”. After participants described their experiences of discrimination related to being young Black women, our interviewer then asked, “Are there any stressors that you feel are specific to being young, Black, and female?” and “Where do you feel that the young Black female stereotype is primarily coming from?”. We posed clarifying questions, such as “Can you tell me more about that?” and “How did that experience impact your stress?”. All prompts were guided by the participant responses. Transcripts were audio-recorded and transcribed verbatim.

Data Analysis

Qualitative methods are well-suited to an intersectional perspective and a richer understanding of health inequities (Bowleg et al., 2017). Our data analysis was guided by Braun & Clarke’s (2006) thematic analysis framework, as we sought to better understand the maternal health experiences of Black women. We chose thematic analysis to develop more implicit themes and patterns from the data (Braun & Clarke, 2006).

This thematic analysis (Braun & Clarke, 2006) was conducted by MDK, NOH, NC, FF, WZ, and KE, a research team consisting of student and faculty experts in women’s maternal health and health disparities. NOH, NC, PP, KS, NS, and LR identify as Black cis-gender women and MDK, JNR, KLL, KE, and LTH identify as white cis-gender women, all with experience in women’s health care and/or research. FF and WZ identify as Asian cis-gender women. Regarding potential biases, we recognized how our own experiences of racism, sexism, ageism, and the intersection of these identities may influence the way we understand and interpret participants' experiences. Furthermore, we discussed how our experiences working with underserved individuals may impact our interest in specific research questions, guiding theory, and analysis. Therefore, we were careful to not make assumptions or draw conclusions of participants' experiences informed by prior work.

The first phase of this analysis included rereading the focus group transcripts. The data was individually coded by each member of the team to generate initial codes. The team met weekly to discuss discrepancies and reached a consensus on final codes to create themes. Themes represented the experiences of multiple participants. The research team meetings allowed for discussion of analysis, authenticity of coding, and thematic development, to ensure validity of analysis. Two overarching themes with subthemes were developed from the data. Exemplar quotes for each theme are provided in the format of (Focus Group [FG] Number); because the surveys were completed anonymously, we were not able to report corresponding ages for the quotes.

Research Trustworthiness

Our analysis met criteria of trustworthiness including credibility, transferability, and confirmability (Lincoln, 1985). Credibility was ensured through prolonged engagement with the data (i.e., multiple readings of transcripts, discussions of meaning, context, and quote selection) (Lincoln, 1985), peer debriefing (i.e., sharing and revising analysis and selection of quotes with research team members who were not involved in the coding process and experts from various health-related disciplines (e.g., nursing, medicine), and working within a research team. Data analysis lasted a total of four months, consisting of coding, revising codes, and regular team meetings. Sufficient description of methodology and contextualized narratives of participants supported transferability of findings. We demonstrated confirmability through discussion of potential biases, as well as using peer debriefing and working within a research team to ensure the use of a data-oriented approach and an accurate presentation of the data. We also ensured confirmability through the selection of various quotes that were representative of data and multiple participants' experiences.

Results

We developed two overarching themes: obstetric racism and obstetric resistance. The first theme, obstetric racism, Davis defines as the convergence of obstetric violence and medical racism (Davis, 2019). Research consistently shows that higher exposure to racism is associated with adverse maternal and birth outcomes among Black women. Among pregnant Black women, 54% to 78% report experiencing racial discrimination. The impacts of obstetric racism fall along an iatrogenic spectrum of harmful healthcare experiences during pregnancy ranging from unintentional harm to overt disrespect, violence, and abuse (Liese et al., 2021). To elucidate how obstetric racism framed our participants’ healthcare experiences, we identified sub-themes: intersectional identities as young Black women, medical mistrust, and pregnancy trauma. As all aspects of participants' experiences are shaped by their intersectional identities and social positions, it is important to acknowledge the first sub-theme is incorporated into the presentation of the remaining sub-themes. Although we did not explicitly ask questions related to discrimination and prejudice, participants described experiencing this in the context of maternal health. The second major theme describes ways in which participants protected themselves against obstetric racism to engender positive health experiences. These methods of resistance included identifying advocates and relying on trusted providers.

Obstetric Racism

Intersectional identities as young Black women

The young Black women that participated in this study described how the intersection of their age, race, and gender led to disrespectful and harmful health care. This included how providers, hospitals, and societal systems interacted with them in explicitly and implicitly racist manners.

The stereotypes they often described came from and were perpetuated by societal and cultural influences such as social media. The most common stereotypes described by participants were based on biases or assumptions of their identity related to socioeconomic status (i.e., ghetto) or educational level (i.e., stupid). Participants described enduring stress and trying to work hard to combat these stereotypes as being a “double minority”. The double minority stereotype refers to the low social status identities (i.e., gender and race) that conferred and marginalized them from more privileged treatment (Crooks et al., 2021). For example, the following quote describes the experience of being a “double minority” in the context of the US:

“Being Black women…they always say you know, it’s…easier for men, and women have to work twice as hard to get where they need to be, or we want our expectations to be…definitely that’s like stressful, also um, always not tryna portray an image that people always say ‘all these ghetto Black girls’” (FG1)

Participants described the stress and negative impact this had on their pregnancies, as these stereotypes seep into the healthcare system and their interactions with providers. They also described the stress in trying not to portray stereotypes of young Black women. When race intersected with age and pregnancy, people treated them with less respect within the healthcare setting.

“I knew from the start that I’m going to breastfeed. And then, this doctor, she’s an older white lady and she’s like, well…‘do you plan on breastfeeding?’ Because, before she continued, I was like I want to breastfeed because I know nutrition gets to my baby. ‘Are you sure? Cuz you’re pretty young. And, you know, you can’t smoke and stuff’” (FG2)

Participants in our focus group use the term “smoke” as a surrogate for marijuana use. This doctor assumes that because she is a young Black woman, she uses marijuana and would prioritize this over the needs of her child, even though the participant initially was going to breastfeed. The American College of Obstetricians and Gynecologists discourages marijuana use during lactation due to insufficient data about the effects on infants. However, this doctor disregarded the participant’s intention to nourish her baby based on stereotypes.

Consequently, participants described facing judgment during pregnancy based on stereotypes. Stereotypes about Black female pregnancy embedded in our culture and society often lead to provider bias, prejudice and judgment of patients (FitzGerald & Hurst, 2017). Additionally, statistics about maternal health disparities often perpetuate these stereotypes (Aronson et al., 2013). One participant described how stereotypes of Black pregnant women intersected with her socioeconomic status and led to judgment about care of her children:

“Like they [other focus group members] were saying like about social media how they’re judgmental or how so many Black girls are getting pregnant…we’re the higher rates or whatever the case may be, and how y’all taking care of your kids when you don’t got a job…stuff like that.” (FG1)

Increased public awareness of racial disparities in maternal health and economic inequity are refocused as judgments on Black mothers for getting pregnant in the first place, instead of an indictment of the racism that underlies these disparities.

Another participant gave birth to a stillborn baby boy in her previous pregnancy. She reports attending school when it occurred and was hurt by other’s reactions when she returned to school after the experience. She was surprised her teachers and peers expected the stillbirth experience would have stopped her from returning to school and accomplishing her goals. She attributed this response to their low expectations of young Black women based on stereotypes. She felt judged after her son’s stillbirth

“I got back to school. And they was just like, ‘you doing all this?’ Like, surprising. Like I should’ve just let [the stillbirth] keep me back or whatever, but it actually motivated me more so it’s just like, I guess the goals that I accomplish, people are surprised by me being African American.” (FG1)

Participants described feeling judged based on stereotypes about Black pregnant women, held by providers and society at large. Stereotypes often lead to provider bias and assumptions, which contributes to the dismissal of young Black women, ultimately impacting their experiences in the health care system.

Participants spoke of providers assuming they were less intelligent and not taking medical advice seriously based on their identities as young Black women. They were viewed as not having the knowledge of their own bodies and were contradicted or not believed. One participant described not being taken seriously during her pregnancy.

“Healthcare, it is terrible. Because I feel like that the doctors and providers do not take my notes seriously. That bothers me. Especially when pregnant.” (FG2)

Being dismissed generated mistrust in providers and feelings of discrimination by the healthcare system. Another participant who sought a vaginal birth after previous cesarean section described providers giving her false information because they did not want to offer her this option and believed she would not know any better because she was “slow”.

“Sometimes they don’t wanna do it [offer trial of labor after a previous cesarean] so they tell you, they’ll tell you anything thinking you’re slow, that you don’t know about stuff, just cause they don’t want to” (FG2)

Providing inaccurate or limited information about healthcare options during pregnancy is unethical medical practice. This deception also undermines patient confidence and trust in the healthcare system when their knowledge is dismissed.

“My doctor wasn’t in so she was like substitute or something. But then on top of that, I had a C-section with my first child. And I looked into a VBAC, which is a vaginal birth after cesarean, and she was like, she keeps trying to tell me like I don’t know what I’m talkin’ about. Oh, those don’t exist, people don’t do those.’ Yes they do.” (FG2)

Due to a number of factors including obstetric racism, Black women have the highest rates of cesarean delivery in the United States (Valdes, 2021). The coercion exhibited in this quote demonstrates how access to safer birth options are denied for Black pregnant people, leading to greater disparities, including rates of repeated cesarean sections.

These negative experiences and interactions that young Black women described during pregnancy have long-lasting effects regarding their engagement with the healthcare system as seen in examples of historical medical mistrust (Cooper Owens, 2017; Roberts, 1999; Washington, 2008).

Medical Mistrust

Trust acts as a bridge between providers and their patients, which plays an essential role in an effective provider-patient relationship. High levels of mistrust in healthcare originate with a medical system that has historically dehumanized the Black community. When providers engage in disrespectful care that reinforces stereotypes of young Black women and does not acknowledge their autonomy, they perpetuate systems of medical mistrust. One participant experienced shock and distress when she felt her provider suturing her perineum after birth without her knowledge or consent.

“I got stitched up cuz they gave me three stitches, it didn’t- I didn’t really feel a stitch in me, but it felt like somebody…with a nail was like pinching me. So I was just yelling ‘Somebody get me help, I feel somebody’s nail!’ And I didn’t know that they were like stitching me up because (the epidural) literally only numbed half my body.” (FG2)

Suturing without consent or adequate anesthesia is a violation of trust and a form of obstetric violence, which disproportionately affects BIPOC patients, and contributes to pregnancy-related trauma and mistrust. Another participant described her lack of trust when her providers discussed putting her on medication:

“Like I was so depressed during my pregnancy I didn’t know what to do. My doctor kept on trying to put me on medication and I’m like ‘No I’m not taking them’ because I feel like once they put you on medication, they be tryna keep you on medication. And that’s gon have to be something you have to stay on and I feel like I was strong enough to not have to have the medication.” (FG2)

This participant declined treatment for her depression because she did not trust her provider would respect her preferences. Her experience emphasizes how trust serves as a critical factor influencing a variety of important therapeutic processes including patient acceptance of clinical recommendations, adherence to recommendations, and satisfaction with health care services. Often, patients who mistrust their provider are labeled as noncompliant and blamed for failure to benefit from the treatment prescribed. This places the burden on the individual or community when in fact the individual or community has been let down by the medical system.

Lack of provider continuity also incurred mistrust in the patient-provider relationship. Seeing the same provider for multiple visits can establish a relationship between the pregnant person and their provider; this has many benefits for both including mutual comfort, trust, and respect. It can make the pregnant person feel comfortable asking questions, and the provider can have a better understanding of the person including their knowledge level and needs. The importance of this relationship was clear as participants reported negative experiences with providers they had never met before. Many participants reported these negative experiences were based on stereotypes and assumptions of young Black women. Without an established, trusting relationship with a provider, participants reported having to have persistence when trying to get adequate healthcare.

“I think the one thing it is, is hospitals, and also consistency…When I first went to go see the doctor she was like… ‘Oh, it’s your weight. And you need to lose weight’ I’m like, this happened before I got pregnant. Like, I gained like, I gained 80 pounds pregnant with her…Then I went to go see another doctor, they said something else. So I went to go see another doctor, and finally, she tested me she was like ‘Well, you tested positive for 2 out of the 3 things so we can’t totally diagnose you, but we can start treating you and we can get you in for physical therapy.’ So I feel like…It’s always inconsistent.” (FG2).

Participants reported having to ask for multiple providers before getting one that listened and addressed their concerns, sometimes having to insist it be documented they were not being taken care of before being taken seriously.

Lack of or disrespectful communication from the providers was another critical theme contributing to medical mistrust. Participants having complicated labors described that providers were not explaining what was happening in a way they understood. One woman was nervous because she was given a medication in the hospital that she thought was not safe for the baby. Without clear communication, participants felt they were not getting adequate care which added further anxiety to an already stressful situation.

Some women reported not knowing what happened to them during an examination or procedure and not knowing what to do about it. Participants did not understand their diagnosis and accused providers of trying to diagnose them with a disease when no disease was present.

“They changed it (c-section) to December 2nd, but he was healthy. We don’t know what happened. All of a sudden when I was going through labor, his heart start dropping and they’re like ‘Well we’re gonna give you an epidural just in case’. They gave me my epidural…I didn’t feel a pinch.” (FG2)

Another participant reported an incident during an office visit without her mother as an advocate due to a lack of provider communication.

“The one time I went without my mom I got my membrane stripped and she was like, ‘You didn’t need to do that.’ They stripped my membrane. It’s like they stick their fingers in you and start moving your tummy back away from your cervix or something like that and it’s supposed to induce labor so. She’s like, ‘They didn’t have to do that, because, your baby’s healthy even though you’re past your due date, that could’ve ruptured something or risk an infection and all that’, and I’m just like you know that’s why it’s great to have somebody come with you that knows what they’re talking about.” (FG2)

For this participant, these reinforced feelings of mistrust and the need for a physical advocate to help ask questions that would allow the participant to understand their options.

Participant mistrust in providers is embedded in the larger healthcare systems create barriers for Black mothers to access high-quality care. Participants decided whether they would go into a particular hospital based on its reputation in the community, which is a problem in Chicago because access to medical care is often dependent on the hospital’s proximity to one’s residence. However, several community hospitals with maternity care in the predominantly Black neighborhoods on South Side of Chicago have been shuttered, creating a maternal healthcare desert (Robinson, 2020; Schorsch, 2020). This pushes Black pregnant people to access one of the larger, trauma hospitals in the Chicago Medical District for pregnancy-related concerns. One participant described John H. Stroger, Jr. Hospital of Cook County, which is known as a high-volume safety-net hospital (Ansell, 2011):

“Cook County is built for trauma. If you got something that is not trauma related, which is not physical going to be able to kill you— They gone have you sitting there for hours.” (FG2)

The recent closing of labor and delivery units across the city’s South Side exacerbates risks faced by Chicago’s Black community. The Illinois Maternal Mortality Review Committee reports that mothers who die often present to emergency rooms multiple times with concerning symptoms, but due to a combination of lack of symptom recognition, coordination with obstetric providers and racism, their needs are not met ("Illinois Maternal Morbidity and Mortality Report, 2016-2017, Illinois Department of Public Health," 2021). This structural racism explains why Black patients lack trust in the healthcare system, leading to low patient engagement and attendance in care and higher risk.

Pregnancy Trauma

The combination of enduring discrimination, racism, ageism, and mistrust facilitate mental, physical, and emotional trauma for Black women. In pregnancy, emergent health situations become traumatic when patient autonomy and informed consent are compromised for the sake of medical urgency. Crises and urgent situations were common for participants in our sample.

“But probably like at 4-5 in the morning they’re just rushing in like ‘Oh we have to do an emergency C-section’ I’m just like why and they’re like ‘The baby doesn’t have a heartbeat’ and like I wasn’t having any more contractions…and nothing on me was hurting at all. And I had to have an emergency c-section and…they got him out fast enough to put him on oxygen to get his heart back.” (FG2)

While quick medical decision-making and action may have saved this participant’s baby’s life, urgent changes in health care left participants feeling terrified and like they had no control. The trauma of emergencies are sometimes exacerbated by messages, warnings and ultimatums from providers about impending death.

Participants reported receiving ultimatums with threats of severe adverse outcomes, such as stroke or coma and even losing their babies. They reported that providers used coercive language indicating they “could die” if they refused treatment and felt providers were trying to scare them into treatments or procedures. These were presented to the participants as likelihoods if they did not continue with the plan of care outlined by the provider. One woman had a particularly traumatizing experience:

“With my daughter…having her early, when I did finally push her out…the baby was not breathing, she was born blue…we literally had to suck so much stuff out of her…they kept on tryna scare me because…my blood pressure was so high that I was gonna have a stroke or a seizure…They said we’re gonna give you a back epidural. Now this is gonna do one of two things; bring your blood pressure down and you’re gonna be okay. Or, if it go down too fast you could die…I mean that was my ultimatum…They literally had me sign a paper saying if something happened, I wouldn’t be able to save my daughter. And once I push her out, even when I got my epidural…only helped half my body. So it numbed my whole left side, on my right side I could feel everything. I was kinda loopy the whole time…even filling out her birth certificate.” (FG2)

This participant perceived the information provided to her during the consent process as an ultimatum. She felt coerced by the threat of harm to herself and her baby. In the process of communicating information about treatment options, this individual did not have an opportunity to reflect on her preferences, values, and goals, learn about more options, and did not feel that she had an opportunity to signal her concerns. In this case, informed consent was not a collaborative process allowing patient and providers to make decisions together assuming more than one reasonable alternative existed. Physician paternalism can render informed consent illusionary because physicians are presumed to not only know what is best but also to be unbiased and objective in their expertise. Likewise, patients are socialized to trust medical authority by deferring their trust to the provider. Additionally, in obstetrics, Black women must contend with both gender and race subordination, which often results in obstetric violence. Obstetric violence is gender-based violence as individuals continue to report mistreatment and coerced medical interventions during labor and birth. The combination of all these factors (i.e., stereotypes, bias, mistrust, etc.) caused more trauma and had long-lasting effects on Black women’s pregnancy experiences. After reflecting upon these experiences many of them described not wanting to initiate care or return to their provider for their care.

Obstetric Resistance: Advocacy and Autonomy

Participants repeatedly reported feeling as if they did not have a choice when it came to matters of their body during healthcare interactions in pregnancy. A thorough discussion resulting in a shared meaning between the provider and the woman regarding the rationale for procedures, medications, and risks involved were missing. Participants often left conversations with a sense of misunderstanding and feelings of coercion.

To combat this familiar sense of lack of autonomy as young Black women, family members were often called in to advocate and aid in decision-making related to their pregnancy. In particular, participants often reported relying on their mother to interpret procedures and intervene when there was uncertainty surrounding a rationale for a procedure. Mothers took an active role in instructing the providers to explain the procedure, medication, etc. to the daughter. The role of the mother as an advocate for their daughter was important and was seen as a necessary intermediary.

“I wouldn’t let them touch me at all, unless my mom was in the room. So like when they try to give me an epidural or they try to give me a tetanus (TDap), I was like ‘Don’t touch me, y’all not touching me until my mom tells me why’. So like if they say something to my mama I be like I don’t understand my mama be like here you need to, break this down a little bit more so she can understand what y’all doin to her, the medicine that y’all givin her.” (FG2)

This example illustrates the mistrust and miscommunication between providers and young Black pregnant women. Not only did the participant refuse to be touched without her mother present, she also relied on her mother to be an intermediary and help her understand why treatments were necessary. Other participants also echoed the importance of their mothers in helping them feel safe. Participants reported calling their mother during procedures or during or after conversations with the provider to get clarification on what happened and guidance on what questions they should be asking.

“All this stuff going on with all these kids and they parents not being involved and I am happy my mama ain’t like that. My mama she will call me…and when she at work and it’s just me and my kids dad, she’ll be on the phone like what’s going on what happening to you, what’s being said. And I’ll explain it to her, she’ll be like what they mean by this.” (FG2)

Mothers were relied upon to spur their daughters to ask questions of the provider. Mothers’ insistence to question providers slows down medical decision-making to allow for informed consent and subverts the typical hierarchies of medicine wherein the provider makes recommendations and the patients acquiesce to their perceived superior knowledge. Daughters considered their mother’s encouragement to take charge of their care and be proactive with questions in a favorable light. Participants had a sense that they needed to take charge of their care and be proactive since providers were not providing the needed information. Promotion of advocacy and autonomy by the mother fostered independence within the daughter.

“And I wasn’t the type to ask questions. Doctor said ‘Do you have any questions?’. And my mom would look at me, and see if I did, then if she sees that I didn’t, then she’ll just start with questions and just start with the questions. She like ‘You gotta be better than that, ask about your health and make sure they know what you’re going through and don’t be afraid to refuse anything.’” (FG2)

By simply acknowledging that participants could refuse provider recommendations or treatments, participants’ mothers undermined long-standing power hierarchies associated with Western medicine and protect young Black women from coercion. Their insistence to challenge, question and refuse likely stems from generations of obstetric violence and trauma deeply rooted in the Black experience (Cooper Owens, 2017).

Positive Provider Relationships

While many participants had negative experiences with their providers, characterized by mistrust, others shared stories that illustrated the impact and importance of having a trusted healthcare provider. One reported their experience of having a smooth admission to the hospital because their provider called ahead to prepare the staff for their arrival. Another participant talked about their experience with their child in the emergency room. Multiple other providers had dismissed their concerns before they had contact with the provider they knew.

“Thankfully, my baby’s pediatrician already or primary care physician was there, so I could tell her about it, so I can ask her if this is not right she said ‘Yeah this is not right. It seems to me like he having an allergic reaction to the medication. He had a break out.’ And I said that’s what I was telling them.” (FG2)

Having an established relationship with a provider allowed the participant to be heard and facilitated care for their child. Effective therapeutic communication, listening, and setting aside biases and assumptions of Black people are critical to creating a positive birthing experience for Black women.

Discussion

The discourse found in the published literature surrounding young Black mothers primarily report current rates of mortality and morbidity and focuses on the vulnerability of this population. Maternal mortality is largely understood and communicated to the public to be rooted in individual-level risk factors. Common to the literature are descriptions of pathologies, disorders, risks, and stressors among young Black mothers. These narratives contribute to the blaming of Black mothers for their health disparities (Scott et al., 2019) and reinforce provider and societal bias, ultimately perpetuating obstetric racism. Little attention is given to how young Black women exercise their strengths and activate their support systems. There is a need to highlight the voices of young Black women and underscore the community that they rely on, and which advocate for them.

This paper provides a frank exploration of young Black women’s experiences with the health care system. Several participants felt that their healthcare providers dismissed their concerns, performed procedures without their consent, and did not engage in shared decision-making, leaving these women feeling mistrust and disenfranchised with their healthcare experiences. As experiences of structural racism and obstetric violence are common among Black women (Ertel et al., 2012; Vines et al., 2006), participants in our sample described how they felt their experiences of obstetric racism were due to their intersectional identities of being young and Black, which often resulted in both physical and emotional trauma. Overall, young Black women didn't feel their voices were heard and valued by their providers. This dismissal often led to frustration and depleted confidence and trust within the healthcare system. Participants' experiences were clearly far from ideal; however, racism played a critical role, as it is associated with preterm birth (Bower et al., 2018) and contributes to racial disparities in infant outcomes (Mehra et al., 2020). In particular, the judgment, stigma, and discrimination experienced by young Black pregnant women in our study are sources of stress that are considered to be risk factors for preterm birth (Giurgescu et al., 2013).

These results are particularly alarming since for many women their first entry into healthcare is during pregnancy (Handler & Johnson, 2016; Kitsantas et al., 2012). The care a woman receives during pregnancy is often her first encounter with a provider framing subsequent engagement with health care. Black women tend to initiate prenatal care later and utilize prenatal care at lower rates compared to other groups of women, most likely due to maltreatment by the healthcare establishment (Gadson et al., 2017). In a cohort of 1,410 Black women in Detroit, nearly a quarter of women reported delaying the initiation of prenatal care due to experiences of racism (Slaughter-Acey et al., 2019). Further, these results were impacted by the continuum of skin color (i.e., “colorism”), with those with darker skin having a stronger association (Slaughter-Acey et al., 2019). Experiences of mistrust and disrespect during their pregnancy may impact a Black woman’s desire and inclination to return for well-women care and screening post-pregnancy, as well as general preventative healthcare throughout their lifetime. Thus, these early experiences with prenatal care may impact a Black woman’s lifetime experience with health care. Additionally, once a woman has experienced disrespectful communication and mistrust with the health care practitioner, their decision to seek care and engage in health care for their children and other family members may be impacted. Therefore, disrespectful care and experiences of racism during pregnancy have implications for the lifetime of both the individual and their family.

Our participants reported being subjected to invasive procedures and treatments that caused potential or actual harm without appropriate informed consent. The result of these actions by providers falls along a spectrum ranging from unintentional harm to overt disrespect, violence, and abuse (Liese et al., 2021). For example, our participants described a sense of emergency surrounding their pregnancy and birth, including cesarean delivery, and reports that their life or their baby’s life was in jeopardy. Often this sense of emergency surrounding their pregnancy and birth resulted in procedures that our participants felt they had “no choice” receiving or felt pressure to accept without reaching a shared understanding with the practitioner. In a national survey, a quarter of respondents reported feeling explicit pressure from a healthcare provider to a cesarean, and only 1% of women elected to have a medically unnecessary cesarean, belying the notion that increases in cesarean birth rates can be attributed in bulk to maternal “choice” (Declercq et al., 2014). Threatening a mother with endangering the lives of their fetus if they do not accept the doctor’s advice pits the mother against her fetus, supporting a narrative of “good” motherhood in which the mother’s needs are subservient to the child’s.(Liese et al., 2021) Researchers argue that the framing of emergent fetal distress potentially compromises the key tenets of informed consent – that “the patient must not be cognitively impaired by medication, personal emotional stress, or external stress by family members or physicians” (Rutherford et al., 2019).

In the US, women of color are subjected to overuse of medical interventions, such as cesarean delivery, and some women may try to exert agency by declining procedures (Liese et al., 2021; Rutherford et al., 2019). However, declining procedures, especially for Black women, may be viewed as uncooperative or non-compliant (Attanasio & Hardeman, 2019; Morton et al., 2018). In fact, women of color, who already expend more effort to manage their image during healthcare encounters to avoid stereotypes (e.g., “angry Black woman”) are particularly vulnerable (McLemore et al., 2018). A woman may have researched care options and know what interventions or procedures she would like and which she hopes to avoid, potentially resulting in refusal of medical procedures (Afshar et al., 2018). When a white woman displays such behaviors, this could be perceived positively as manifestations of health literacy and patient engagement, which are currently valued in the US healthcare context (Koh & Rudd, 2015). However, a Black woman behaving the same way may be perceived as aggressive or difficult (Ghavami & Peplau, 2013). In a recent study of 100 Black women in California, participants reported having their attempts at self-advocacy suppressed by the clinicians caring for them (Oparah et al., 2018). Similar reports of suppression of voice and advocacy were found among our sample of young Black women.

Nonetheless, participants also described methods by which they resisted negative obstetric experiences, particularly by establishing trusted individuals as advocates and providers. Many women in our sample relied on a family member, specifically their mother, to assist with their advocacy efforts when interacting with their practitioner and the health care system. In a clinical context where there is mistrust between the patient and provider, “authoritative knowledge” (Davis-Floyd & Sargent, 1997), or knowledge that counts, is often transferred to a family member, subverting the traditional medical hierarchy. Inclusion of multidisciplinary teams have been recommended, including doulas and/or peer navigators (McCloskey et al., 2021) and obstetric care navigators, which have positive impacts on patient-provider communication and satisfaction with health care experiences during pregnancy (Austad et al., 2017). Our results demonstrate that there is a need for young Black women to have a champion that can help navigate the healthcare system, interpret practitioners’ advice, and support their decisions during their healthcare interactions.

Several explanations exist for these experiences of racism and maltreatment that our sample reported. One potential explanation is that many clinicians hold negative implicit racial biases and explicit racial stereotypes (FitzGerald & Hurst, 2017). These implicit racial biases, defined as unconscious or automatic, persist independently of and often in contrast to explicit racial attitudes (Chapman et al., 2013). Indeed, while healthcare providers may consciously reject negative images and ideas associated with disadvantaged groups, these providers have also been immersed in cultures and a worldview where these groups are constantly depicted in stereotyped and pejorative ways (FitzGerald & Hurst, 2017). Perceived racial privilege is another aspect of racial relations relevant for healthcare delivery and is another possible explanation to the results seen in this sample of young Black women. Perceived racial privilege is defined as an awareness of having an advantage status because of one’s racial background and is a product of systemic racism (Fujishiro, 2009).

Interpersonal racism and bias by healthcare providers are embedded in long-standing oppressive systems and policies that have led to the inequitable distribution of resources and affected the quality of life for Black women. Structural racism is defined as “normalization and legitimization of an array of dynamics – historical, cultural, institutional, and interpersonal – that routinely advantage whites while producing cumulative and chronic adverse outcomes for people of color” (Lawrence & Keleher, 2004). In Chicago, structural racism has been historically used to advantage white people over Black people in society through the implementation of discriminatory practices such as redlining, which has been proven to limit access to housing, quality education, wealth, employment, and disproportionate incarceration rates (Bailey et al., 2017; Chambers et al., 2020; Gee & Ford, 2011; Mehra et al., 2017; White & Borrell, 2011). The impact of structural racism on maternal health experiences and outcomes is particularly significant because Chicago is one of the most racially segregated cities in the US (Orsi et al., 2010). The recent closing of labor and delivery units across the city’s South Side has created a maternal health care desert that limits healthcare choices and exacerbates risks faced by Chicago’s Black birthing community (Schorsch, 2020). Structural racism amplifies interpersonal racism leading Black women to mistrust the healthcare system and have low patient engagement and attendance in care. This context is especially important when discussing disparities in maternal health experiences because reducing these disparities will require systemic changes beyond addressing the racism of health care providers.

Although several grassroots organizations led by Black women aim to help expectant women advocate for themselves and have the goal of improving Black women's birth experiences, it is also necessary to change the individual- and systems-level factors that produce these negative experiences, and specifically to increase respect in the patient-provider relationship. Our data indicate that Black women who trusted in and had established relationships with their providers experienced respectful interactions which established trust in the practitioner and health care institution. Black women in our sample who had established a trusting relationship with their provider sought out follow-up care with the same provider and consistency in care. Both practitioners and institutions need to move toward patient-centered care as an ideal model with practitioners respecting and considering patients’ preferences and values and involving patients in decision-making.

Providers, administrators, and institutions must proactively work to redistribute the power to the communities most affected by historical and structural forces that limit their ability to achieve reproductive health equity (Dehlendorf et al., 2021). Changes that are required include changes to interpersonal power dynamics through a focus on person-centered models of health care (Epstein & Street, 2011) such as shared decision-making models and changes to institutional power through shared governance structures such as patient-led governing boards (Sharma et al., 2018). However, multiple overlapping structures within medicine institutionalize white privilege, so that it is maintained as the status quo. Probably one of the most important steps moving forward for both individuals and institutions includes acknowledging both the historical and ongoing harms perpetuated by the medical profession. Accountability for these harms would include structural reforms to correct the imbalance of healthcare providers of color. When asked how to improve perinatal care, Black mothers have consistently requested Black providers (Altman et al., 2020; McLemore et al., 2018). Racial concordance between patients and providers facilitates cultural sensitivity and trust-building in ways that increase patient satisfaction and engagement and may improve health outcomes (Greenwood et al., 2020). Another positive step are legislative efforts to extend Medicaid coverage for the 1^st year postpartum and doula coverage. For example, in 2021 the Illinois legislature passed HB 158 which allows weekly prenatal doula services through the first postpartum year.

Limitations

This study has several limitations including a small sample size, missing demographic data for two study participants and report of corresponding ages for the quotes. Another limitation includes lack of data on the providers caring for the women in this sample. Our team did not capture data on the racial identity of the providers caring for these participants. For example, while there is evidence for the improved outcomes when patient and provider share racial concordance (Greenwood et al., 2020), we were not able to capture the impact of concordance or lack thereof. Since all the participants in this sample identified as single, this data is reflective of young single Black pregnant people’s experiences but may not be capture other Black pregnant people’s experiences. Despite these limitations, the data is unique by using an intersectional perspective to highlight the pregnancy and health care experiences of young Black women in the US.

Conclusion

To address the gaps in care identified by our data, we join the community of scholars and providers calling for maternity care in the US to be reorganized and centered on patients’ needs and values. This can be accomplished through a reproductive justice framework, “which encompasses Black feminist ideology, reproductive rights, and social justice to contextualize reproductive health within an intersectional human rights framework” (Julian et al., 2020; Ross, 2017). Community-informed and evidence-based initiatives that simultaneously promote patient autonomy and improve clinical outcomes include midwifery-led care,(Hardeman et al., 2020) group prenatal care, doulas (Kozhimannil et al., 2013), and community-based postpartum doulas (Thorland & Currie, 2017) for up to 12 months postpartum. Ultimately, the responsibility lies with every clinician to center the voices of underrepresented patients as experts on their own experiences and ensure patients come away from clinical experiences with shared meaning.

Highlights.

• Little is known about the intersection between race and age in prenatal care experience.

• Participants felt their concerns were dismissed and mistrusted their providers.

• Women were disenfranchised with their healthcare experiences.

• Practitioners should affirm and create conditions for healing for young Black women.