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African American Women’s Maternal Healthcare Experiences: A Critical Race Theory Perspective

Comfort Tosin Adebayo , Erin Sahlstein Parcell , Lucy Mkandawire-Valhmu & Oluwatoyin Olukotun

To cite this article: Comfort Tosin Adebayo , Erin Sahlstein Parcell , Lucy Mkandawire-Valhmu & Oluwatoyin Olukotun (2021): African American Women’s Maternal Healthcare Experiences: A Critical Race Theory Perspective, Health Communication, DOI: 10.1080/10410236.2021.1888453

To link to this article: https://doi.org/10.1080/10410236.2021.1888453

Published online: 18 Feb 2021.

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African American Women’s Maternal Healthcare Experiences: A Critical Race Theory Perspective Comfort Tosin Adebayo a, Erin Sahlstein Parcell b, Lucy Mkandawire-Valhmuc, and Oluwatoyin Olukotund

aDepartment of Communication Studies, Towson University; bDepartment of Communication, University of Wisconsin-Milwaukee; cCollege of Nursing, University of Wisconsin-Milwaukee; dSchool of Nursing, University of Portland

ABSTRACT Black women are experiencing pregnancy-related complications at a significantly higher rate than women of other races in the U.S., as Black women are three to four times likely to die from pregnancy-related complications compared to non-Hispanic White women. Structural barriers and different forms of margin- alization continue to limit Black women’s access to quality healthcare services. Through critical race theory, we examine what structural barriers exist in the U.S. healthcare system, one that limits access to quality care during their prenatal and postnatal doctor’s visits. Using qualitative in-depth interviews, 31 African American women, living in Milwaukee, WI, shared their pregnancy stories. The emergent themes include, institutionalized care – racially insensitive biomedical approach, race and class – unfair treatment based on health insurance, and race as a social concept – dismissed pain concerns because you are a strong Black woman. These themes reveal the experience of racial discrimination toward African American women through healthcare [communicative] practices that are often times seen as “standard” practices, albeit marginalizing minority populations. Findings from this study offer insights for healthcare providers on communicative practices that foster a racially-safe healthcare environment for African American women.

Racial disparities in healthcare delivery is well established in the literature [Centers for Disease Control and Prevention (CDC), 2019; Creanga et al. (2015); Mkandawire-Valhmu (2018)]. Numerous studies report that African Americans receive low-quality care and differential treatment when acces- sing healthcare services, as a result of their racial identity1

(Cuevas et al., 2016; Dovidio & Fiske, 2012; Keith et al., 2010; Krieger et al., 2011). Disparities exist for African Americans and other minority populations, for example, in limited infor- mation disclosure by healthcare providers (Ryn & Burje, 2002), verbal dominance by healthcare providers (Ha & Longnecker, 2010), dismissive attitude of healthcare providers toward patients’ concerns (National Public Radio, 2017), and ulti- mately, provision of low-quality care (Ward et al., 2013). Racism and racial discrimination are factors that have been linked to the delivery and experience of race-based care2 in the U.S. healthcare system. From the historical events of slavery to the Tuskegee Syphilis study of 1932 (Scharff et al., 2010) and the ongoing socio-political discourses that reinforce racial dis- crimination in the U.S. (Williams & Wyatt, 2015), African Americans continue to report racial disparities that impact their health.

Maternal health disparities are a major health concern for African American women. According to the Centers for Disease Control and Prevention (CDC) (2019), the maternal healthcare crisis among African American women is evidence of health disparities in U.S. society. African American women, as well as American Indian and Alaska native women, are two

to three times more likely to die from pregnancy-related com- plications when compared to White women. Sadly, for Black women, this disparity exists regardless of socio-economic sta- tus or determinants of health as “[t]he PRMR (the pregnancy- related mortality ratio) for Black women with at least a college degree was 5.2 times that of their white counterparts” (Centers for Disease Control and Prevention (CDC), 2019, para. 6). This provides strong evidence that the issue of health inequities for African American women is not solely of a function of social factors such as socioeconomic status, but rather, it is a complex problem reflective of structural factors that negatively and disproportionately impact African American women (Gee & Ford, 2011; Homan, 2019).

Given the complex nature of maternal health inequities in African American women, critical theoretical perspectives, such as the critical race theory, offer an appropriate analytical lens to deconstruct the unique experiences of African American women within the U.S. context. Employing a critical race theory perspective (Delgado et al., 2017) to the study of African American women’s health is valuable in exploring and critiquing hegemonic ideologies and structures that impact the realities and health outcomes of African Americans. In this study, we sought to unravel how African- American women make sense of the influence of their racial identity during maternal healthcare encounters. Specifically, through their stories, we explored and critiqued manifestations of racial discrimination in communicative acts of healthcare providers when providing medical services, with the goal of

CONTACT Comfort Tosin Adebayo [email protected] Department of Communication Studies, Media Center, Towson University, Rm 203, 8000 York Road, Towson, Maryland 21252, USA

HEALTH COMMUNICATION https://doi.org/10.1080/10410236.2021.1888453

© 2021 Taylor & Francis Group, LLC

understanding their participation in the maternal healthcare crisis in the United States. Further, a secondary objective was to illuminate how healthcare providers perpetuate institutiona- lized and structural practices that advance racial discrimina- tion in the U.S. healthcare system. In the following sections, we conduct a review of previous studies that have revealed the myriad problems African American women experience in accessing the U.S. healthcare system, followed by a description of our study and findings.

Literature review

The problem–health disparities, race, and gender

Health disparities have garnered increased attention in the United States over the past twenty years. However, despite a significant comprehensive report on health inequities by the Institute of Medicine and the scholarly discussion that ensued, ethnic minority communities continue to experience a high burden of poor health outcomes across a number of health indicators (Baciu et al., 2017; Institute of Medicine, 2003; Noonan et al., 2016). For instance, African Americans continue to be disproportionately impacted by adverse maternal child health outcomes (Howland et al., 2019; Singh & Stella, 2019). Compared to White women, African American women are twice as likely to have a child with low birth weight and one- and-a-half times more likely to have a preterm birth (Martin et al., 2017). Similar patterns of disparities in African American women are seen across other reproductive health indicators including perinatal loss mortality (Koch & Geller, 2019), and maternal (Petersen et al., 2019) and infant mortality (Kitsantas & Gaffney, 2010).

While ongoing efforts are made to comprehensively delineate the causes of persistent health disparities, growing evidence points to the effects of a myriad of complex, multilevel factors rooted in institutionalized discrimination based on race and gender (Gee & Ford, 2011; Gollust et al., 2018; Shavers & Shavers, 2006). Their systematic margin- alization, operationalized through policies, societal prac- tices, and differential access to resources and power, has been cited as the distal cause of adverse health outcomes for African American women (Gee & Ford, 2011; Homan, 2019). Notably, for African American women, the margin- alization they experience as a result of their racial and gender identities cannot be analyzed independently of each other. Strong evidence indicate that the combination of both racial and gender discrimination that African American women experience adversely impacts health through physiological and psychological stress pathways (Perry et al., 2013). Beyond the differential access to resources that results from institutionalized discrimination, understanding the experiences of marginalized communities during healthcare encounters are a critical component of unearthing how disparities in health outcomes are pro- duced within the healthcare infrastructure (Penner et al., 2014), particularly for African American women who bear a disproportionate burden of adverse birth outcomes.

Provider-patient communication and the experience of racial discrimination

Communication occupies a central role in healthcare encounters (Adebayo et al., 2020). The sensemaking process of healthcare services is mostly interpreted from the perspective of commu- nication. In reporting their experiences of racial discrimination when accessing healthcare services or low-quality care, patients (regardless of racial identity) have identified communication factors as key variables when examining experiences of racial discrimination during healthcare encounters (Cuevas et al., 2016; Ha & Longnecker, 2010; Raine et al., 2010). For instance, African Americans have reported poor communication and lack of expressed respect by healthcare workers (Cuevas et al., 2016). These findings are similar to many others that have examined the healthcare barriers of African Americans (Ha & Longnecker, 2010; Mazul et al., 2017).

As evidenced in previous studies (e.g., Cuevas et al., 2016; Raine et al., 2010), patients also often assess the quality of care received through the lens of communication; how the provider related to them, the clarity of the message, the depth of the message, the content of the message, and the display of inter- personal connection with the patient. Specifically, the quality of interpersonal communication between physicians and patients impacts health outcomes by influencing patient satisfaction, physician-patient trust, and rapport, willingness to disclose important health information (Arnold & Boggs, 2019). Communication functions as a significant tool in shaping the quality of healthcare services in any context (Abioye Kuteyi et al., 2010; Ha & Longnecker, 2010). Quality communication, or its lack thereof, influences patients’ perceptions of the healthcare system and the services delivered during patient visits. More specifically, implicit and explicit racial biases thrive through verbal and non-verbal communication. Studies show that “Black patients feel less respected by the physician, like the physician less, and have less confidence in the physician regard- ing their medical encounters when the physician exhibits greater implicit racial bias” (Dovidio & Fiske, 2012, p. 948). Moreover, in the context of maternal healthcare visits, African American women have reported poor communication along the lines of rushed interactions, ambiguous word choices, and lack of affec- tion or empathy (Raine et al., 2010). Evidently, healthcare experi- ences are communicatively interpreted; hence, analyzing women’s maternal healthcare experiences as a communication phenomenon provides an important perspective.

Maternal mortality among African American women

Despite efforts made to unravel and ameliorate racial dispari- ties in maternal mortality in the U.S., the persistent inequities in outcomes for African American women remains alarming. Specifically, non-Hispanic African American women have higher rates of maternal mortality compared to other ethnic and racial groups with a two to three-fold increased odds of dying from pregnancy-related complications when compared to non-Hispanic White women (Centers for Disease Control and Prevention (CDC), 2019). One study found that being

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a Black woman with a chronic illness was associated with a two to three-fold increased odd of maternal mortality in compar- ison to White women with the same chronic condition (Tucker et al., 2007).

Arguably, while some evidence exists for the clinical and pathological causes of maternal mortality in the U.S. (Centers for Disease Control and Prevention (CDC), 2019; Creanga et al., 2014), the prevalence of this health problem among African American women remains a puzzle. Previous studies have documented the existence of racial and health disparities in the quality of care received by African Americans when accessing healthcare services (Krieger et al., 2011). Consequently, to analyze the U.S. maternal health crisis from a biomedical perspective with inattention to race and racial discrimination, as often times reported by the CDC, presents an incomplete argument. The role of race as an integral factor in maternal health inequities is evident in extant literature (Mazul et al., 2017). Race, as a factor in healthcare experiences, is further illustrated by the reported experiences of prominent African American women like Shalon Irvings, an Epidemiologist at the Centers for Disease Control and Prevention, who passed away weeks after delivery in 2017 (National Public Radio, 2017). Irving’s case was not one linked to poverty or low education, she had two doctoral degrees; rather it was linked to racial disparities in quality of healthcare she received as reports indicate that her health symptoms were repeatedly dismissed days before her demise (National Public Radio, 2017).

Similar to Dr. Irvings experience, the African American maternal health literature is replete with reports of health symptoms being trivialized or dismissed. Stemming from his- torical events of slavery, African American women are often perceived to be “strong” and able to go through hardships and withstand pain beyond what is considered “normal” (Davis, 2015; Watson-Singleton, 2017). This racial discourse of (per- ceived) strength negatively impacts African American women within the healthcare context. The perception of being strong has been reported to “force” African American women to internalize their pains and hardships, and healthcare providers often reinforce this discourse (Collins, 2000; Watson- Singleton, 2017). The foregoing review provides an overview of the African American women’s interactions with the health- care systems. However, beyond the problematic communica- tion encounters there are structural barriers, otherwise labeled “standard practices,” that propagate health inequities for African American women, which is the focus of our study.

Structural barriers in African American women’s maternal healthcare experiences

In this study, we focus on two main structural barriers con- fronting African American women during prenatal and post- natal care: the institutionalized biomedical approach to maternal care and the structural barrier of public health insur- ance. The biomedical approach to maternal healthcare is notorious for its overt focus on Western medicine and proce- dures in attending to women’s reproductive healthcare needs. Traditionally, the biomedical approach has been criticized for disempowering women, since women are the primary

consumers of healthcare services in the United States and even other parts of the world (Willard, 2005). Particularly concerning women’s reproductive health, the medical profes- sion has been critiqued for the medicalization of women’s experiences, including pregnancy. In this way, the woman’s body is treated as a machine programmed to perform certain operations that can be managed when “faulty” to ensure its appropriate functioning (Andipatin et al., 2019). The domi- nance of the biomedical approach in healthcare has been found to result in “the medicalization of normal life events (e.g., giving birth, menopause) and an over-reliance on technologi- cal solutions” (Willard, 2005, p. 135). Consequently, within the U.S. healthcare system, pregnancy is primarily considered a medical condition, which needs medical intervention for its management and treatment.

Given the lived realities of African American women in U.S. society, the biomedical approach to maternal care further situates African American women as objects in a system that denigrates their racial identity and realities. It is important for healthcare providers to become aware of the reality that “preg- nancy and its associated biological processes are complex and expressed in an assortment of ways, they are lived out in equally complicated sets of social and power relations” (Andipatin et al., 2019, p. e553). African American women have unique social and cultural milieu that position them on the margins of the society. Thus, it is important to understand how the biomedical approach works to usurp power and agency from these women based on institutional healthcare practices that likely do not put racial realities into perspective.

Another notable structural barrier in African American women’s healthcare access is the type of insurance they carry. In the United States, an individual’s socio-economic status can be accurately assessed based on the type of health insurance (that is, public versus private/employer-sponsored). Public (also known as state insurance or Medicaid) health insurance is provided to low-income individuals. For African American women, using the public insurance is often stigmatized (Allen et al., 2014; Taylor, 2019); it does not only label them as low- income, it goes further to limit the access they can have to healthcare. Studies have shown that one of the challenges that confront African Americans on public insurance is finding doctors who accept such insurance plans (Mazul et al., 2017). For those who are lucky enough to find doctors, they are treated with suboptimal care while also discriminated against based on their health insurance (Weech-Maldonado et al., 2012), including limited breastfeeding support (Thorburn & De Marco, 2010). These barriers, as they intersect with race and class, continue to limit African American women’s access to quality care during this vulnerable time of their lives. Critically exploring these barriers and their manifestations from a critical race theoretical perspective provides a holistic understanding of health inequities common to these women, if we are to effectively address the U.S. maternal health crisis.

Theoretical framework: Critical race theory

Critical race theory (CRT) is an interdisciplinary theory that provides a framework for studying the experiences of racially marginalized populations in the U.S. society. It was developed

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by the collective work of scholars like Derrick Bell, Alan Freeman, and Richard Delgado (Delgado & Stefancic, 2012). Though developed by U.S. scholars, the application of the theory has extended to other parts of the world (Warmington, 2012). Three basic tenets guide the understand- ing and application of CRT as discussed by Delgado et al. (2017). First, CRT functions to critique the idea that racism is ordinary, that is, normal. This notion of the ordinariness and normality of racism in the society advances the “color-blind, or ‘formal’, conceptions of equality, expressed in rules that insist only on treatment that is the same across the board, can thus remedy the most extreme forms of discrimination” (Delgado et al., 2017, p. 8). This way, people of color are indiscriminately ignored or unaccounted for in social policies, “because an individual (white) person ‘does not see race’ and therefore ‘is not racist” (Wesp et al., 2018, p. 321). Not only are people of color ignored in social policies that underserve them, they are also discriminated against given the hallmark of what is “good” only resides in whiteness. Second, CRT critiques “interest convergence” and material accumulation of wealth as a core manifestation of racism, one that predominantly serves whites in the U.S. society (Delgado et al., 2017, p. 8). In this regard, as whiteness is positioned as a property of interest (Ladson- Billings & Tate, 2006, p. 2006), CRT challenges the hegemonic functioning of social institutions that advance the interests of Whites, materially and otherwise. Third, CRT upholds the fact that race is socially constructed. In other words, ethnic minor- ity populations are only relevant to the extent to which the society “endows them with pseudo-permanent characteristics,” subjecting them to social and power hierarchies (Delgado et al., 2017, p. 9) where they are relegated to the lowest rungs.

CRT, in its usage, attends to issues of racism, which are believed to be ingrained in social institutions in the U.S., especially in the education sector (Ladson-Billings & Tate, 2006). In its scope, CRT identifies issues of racial injustices among ethnic minorities as well as unveils the impact of social, political, and philosophical structures in advancing different forms of marginalization and injustices toward members of minority racial groups (Hylton, 2012). Consequently, CRT allows for a holistic view of racial discrimination as it manifests systemically, leading to inequities in various sectors of society, including healthcare.

Within the context of healthcare scholarship, CRT “guides us in acknowledging the reality of inequality among these racialized groups and the racist ideology that informs health- care interactions in our society” (Mkandawire-Valhmu, 2018, p. 50). It affords healthcare scholars a unique perspective for understanding the causes of racism in the healthcare system (Ford & Airhihenbuwa, 2010), as rooted in “standard practices and structures.” CRT highlights systemic structures that underserve racial minorities, which in turn advance racism. Within health communication scholarship, CRT has been used to study the healthcare experiences of racial minorities like Hispanics, and African Americans (Vardeman-Winter, 2017). For instance, in the application of CRT to African American and Black Hispanics’ healthcare experiences, Freeman et al. (2017) found that structural racism persists with institutiona- lized healthcare practices that might not represent the interest of minority groups. This includes lack of personalized care, as

they reported being treated based on papers and numbers. One serious implication of these practices that perpetuate racist ideologies is a deeply-rooted, distrust of healthcare providers and healthcare practices. While studies like theirs have employed CRT to unveil how structural racism shape the experiences of ethnic minority groups within the healthcare system, there is a dearth of literature that utilizes a similar approach to analyze structural racism within the maternal healthcare context.

In this study, CRT provides a lens to critically analyze the interconnectedness of racial injustice and the maternal care experiences of African American women. Focusing on the experiences of African American women will center their voices while simultaneously recording how race and systemic racism construct their healthcare realities for Black women. We used the following question to guide our work:

RQ: How does racial discrimination manifest in the mater- nal healthcare narratives of African American women?

Method

Upon the approval of the study by the University of Wisconsin-Milwaukee IRB (UWM IRB # 19.A.238), the first author recruited women to participate in qualitative inter- views through purposive and snowball sampling. Lindlof and Taylor (2019) argue that qualitative interviews are valuable in contexts where participants lived experience and worldview are central to the research questions. Purposive sampling involves the recruitment of research participants by directly asking members of groups or populations who fit the research criteria to participate in the study, while snowball sampling takes place when individuals are recruited through those who have participated in a study (Lindlof & Taylor, 2019; Tracy, 2012). In other words, it involves recruitment through refer- rals – asking research participants to encourage other indivi- duals (e.g., friends, family members, etc.) who qualify for the study to participate (Lindlorf & Taylor, 2019). Announcements were made on Facebook groups and pages dedicated to moms (e.g., Milwaukee Moms, KidsCycle: NS Milwaukee area, and African American Breastfeeding net- work Milwaukee), and the one she created (Black Moms Maternal Health) for African American women living in the Milwaukee area.

Study site

Data collection for this study took place in Milwaukee county, Wisconsin, for close to a year, between March 2019 and February 2020. Milwaukee presently ranks as the most racially segregated metropolitan city in the U.S. (Frey, 2018). Milwaukee also has some of the highest rates of Black infant mortality (City of Milwaukee Health Department, 2018; Ward et al., 2013). According to the Wisconsin Department of Health Services (2019), for the most recent statistics on maternal health outcomes, maternal mortality rates were five times higher among African American women compared to non- Hispanic White women in the city of Milwaukee.

4 C. T. ADEBAYO ET AL.

Participants

Thirty-one African American women participated in this study, which includes four women who participated in the pilot study3 for this present research. Participants were African American women who were currently living in Milwaukee County and had maternal care experiences with healthcare providers in the city or surrounding area. Participants ranged from 20–44 years old and were either pregnant (n = 6) or had been pregnant within the previous year (n = 21). Participants also included women who were part of the pilot study and had been pregnant within the last ten years (n = 4). The majority of the women were either pregnant with their first child or had only one child (n = 16). Ten of the women reported having employer- sponsored insurance, eighteen reported having state insurance, one reported not having insurance, while the remaining three participants did not report their health insurance status. In reporting their marital relationship status, eight women reported being married while twenty-three reported being sin- gle or engaged. For participants who reported their annual income, ten did not report their income or were currently unemployed, thirteen had a household income of less than 35,000 USD per year, five reported an income between 36,000 USD and 70,000 USD per year, while three reported an annual household income between 71,000 USD and 120,000. USD

Semi-structured in-depth interviews

Participants who met the eligibility criteria were interviewed by the first author, either face-to-face (n= 6) or over the phone (n= 25). Before the commencement of each interview, the interviewer read the consent form to the participants, and consent was established through verbal affirmation for both face-to-face and virtual participants. Each interview was audio- recorded and lasted between 50 to 75 minutes.

Participants were asked to narrate their most recent preg- nancy stories starting from the day they learned of their preg- nancy until delivery or present (for those who are still currently pregnant; narrative interview format). Follow-up questions to clarify meanings and solicit other relevant information based on their stories and the focus of the study (respondent inter- view format) were asked. This included descriptive, experience, typology, and example questions (Spradley, 1979; Tracy, 2012). In the latter part of the interview, participants answered ques- tions that solicited information about their perception of the maternal crisis among African American women. These include questions on their racial and pregnancy identities. Upon the completion of the interview, each participant received a 20 USD Walmart or Amazon gift card.

Reflexivity and positionality

As critical scholars, reflexivity and positionality are key to the unbiased interpretation of our data, especially when relating with members of marginalized groups (D’Silva et al.’s, 2016). Reflexivity focuses on how methodological choices impact the interpretation of the data (Corlett & Mavin, 2018). Knowing that truth is socially constructed, it is imperative for researchers

to critically examine how our presence in this research process impacts the process and ultimately the outcome (Dutta, 2010). Our culturally diverse team is composed of Black (three) and White (one) women, from interdisciplinary fields of commu- nication and nursing. We deliberately prioritized the contribu- tion of our minority yet diverse voices to the ongoing discourse of maternal health crisis among African Americans. Our cul- tural and disciplinary diversity allowed for rigorous and critical analysis of our data-giving room for careful interpretation and report of our findings.

Through a pilot study, the first three authors rigorously assessed the research questions and the interpretation of the data refining it to remove possible biases in how participants respond to questions and how we ultimately analyzed the data. Regarding our positionality, we understand that our lived and ongoing experiences (via our social locations of race, class, education, and gender) are capable of influencing our inter- pretation of the data. As such we deliberately chose to analyze the data from a theoretical perspective without losing the diversity that our interdisciplinary and multicultural back- grounds contribute to the research.

Data analysis

The first three authors conducted the analysis of the data. The first author took the lead in this process. Data analysis com- menced during data collection as the first author engaged in an iterative process of interviewing and reflection. Reflecting on interviews and reading notes during the process of data collec- tion are useful practices in making sense of the data at the preliminary level (Saunders et al., 2018). Following the tran- scription of the interviews by a third-party service (Temi™ software) and a research assistant, the first author assessed the 554 pages of transcripts for accuracy. This process included removing any identifying information from the data while assigning pseudonyms to participants to further protect their confidentiality.

In the first stage of coding, we engaged in value coding, a type of descriptive coding that copiously accounts for parti- cipants’ “values, attitudes, and beliefs” as it reflects their per- spective to social issues (Miles et al., 2013, p. 75). This type of coding is useful for understanding and reporting issues of identity as it relates to social realities and issues. Since the study focuses on how the racial identity of Black women inter- fere with their healthcare experiences and outcomes, employ- ing this kind of coding was valuable in unveiling the role race plays in this context. After identifying initial codes (e.g., bio- medical approach to maternal care, women as machines), we merged similar codes by categorizing them into themes as they reflected the tenets of critical race theory issues of racial dis- crimination propagated by social structures in the U.S. society. The third author, given expertise in CRT carefully revised the themes to assess their representation and explanation of CRT. These include analyzing systemic issues, present in women’s narratives, and their impact on healthcare encounters. At the end of this stage, we merged themes that were similar in the information they provided. In the end, the first author closely read through the findings again to identify and clarify any form of ambiguity.

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Findings

In applying critical race theory to African American women’s maternal healthcare narratives, we highlight dimensions of racial discrimination present in women’s experiences during medical interactions and the healthcare practice for maternal care. One of the central arguments of CRT scholars is that racial issues and racism are so ingrained in our system and structures that we fail to perceive them as such-they have become “normal life” (Delgado & Stefancic, 2012; Ford & Airhihenbuwa, 2010). As a result of this, the current study employs CRT to uncover dimensions of racial discrimination and racism that are present in maternal healthcare “standard practices,” while demystifying the ideology of color-blind healthcare system – “the notion of a racially neutral and demo- cratic social order that works for all people” (López, 2003, p. 83). Using the three tenets of CRT as guiding lens, three themes emerged from the analysis: Institutionalized care – Racially insensitive biomedical approach, Race and class – Unfair treatment based on health insurance, and Race as a social concept – Dismissed pain concerns because you are a strong Black woman. A fourth theme emerged from the analysis outside of the of CRT’s basic tenets, Distrust – African American women as charity case.

Institutionalized care – racially insensitive biomedical approach

One of the basic tenets of CRT is the notion that racism is so deeply embedded in the fabric of U.S. social and political institutions that its presence has been normalized and accepted as “standard practice”. However, women in this study chal- lenged these standard practices revealing their shortcomings in advancing a racially insensitive maternal healthcare. Centrally woven throughout the narratives of women in this study is the experience of a racially insensitive healthcare system – the supposed color-blind healthcare. In this context, the institutio- nalized biomedical approach was criticized for its dominance in maternal healthcare practice. African American women challenged this approach as racially denigrating as it has been structurally positioned as “the” way to provide maternal care while ignoring other health approaches to providing maternal care, especially the cultural dimension of health. The narratives of the women in this study pointed out the lack of considera- tion for women’s preferences during pregnancy, speaking to how healthcare providers treated them based on what “text- books” say, while taking away their racial and cultural presence in maternal care. They criticized it for its White-centric method in attending to women’s needs; as the healthcare practices are mostly viewed from the hegemonic standpoint of White women, whose experiences mostly form the basis for healthcare practices during maternal care. When we asked Beth, a 21-year old mother, to narrate her maternal care story, she said:

So, from the first time that I found out I was pregnant, I knew right away that I wanted to have my child at home or at a birthing center. I know that I wanted it to be as natural as possible and I knew that I did not really want to go the regular route of going to like the doctor checkups and stuff . . . .“I want to have this baby at home,

I want to do a natural, I don’t plan a birth in the hospital” . . . .So, I talked to my doctor about it and he became inconsistent. He said that I’m high risk and blah blah. And I feel like he started to say that because I told him about me wanting to birth at home. I feel like as soon as I told him about that, everything just changed. So, then they started telling me that I would have to come in every two weeks and monitor my baby’s growth because I had IUGR, which is injuring growth restriction. So, they claimed, they told me I was really high risk. . . . I had told the doctor like, “Well, I’m still gonna have my baby at home.” And the doctor walked out on me He never came back in the room . . . I’m like, “Y’all are treating me wrong. You’re not listening to me. You’re not respecting me. This is my body, my baby.”

Beth’s narrative shows a rigid biomedical approach to maternal care, one that subtly rejects other maternal care methods such as midwifery and home birthing – practices that are historically and traditionally upheld in the African American community (Dawley, 2003). Given this dominant biomedical maternal healthcare practice, African American women are indiscrimi- nately treated based on a hegemonic model of care, one that inherently does not account for their unique realities, as with other social institutions.

The biomedical approach was not only criticized for its White-centric approach to maternal care, but also for its struc- tured, one-size fits all approach for Black women. In this manner, Black women are treated as a monolith based on “what is generally known about Black health,” rather than being treated as individuals, further reinforcing the ideology that they are mere statistics. Rachel, a 23-year-old first-time mother, shared:

I was diagnosed with gestational diabetes . . . they also diagnosed me to take baby aspirin. Like no reason. They said that as Black people, it’s more common to have that preeclampsia . . . I honestly don’t see why I need to take this. Like I don’t have a history of it. This is my first pregnancy. So, I’m like, “I’m not taking the baby aspirin,” but me being me, when they asked me like, “Oh, are you taking your medicine?” “Yes,” because I don’t want to say no, and they’d try to diagnose me with something, like, “Well she’s not taking her medicine, so she probably has this thing.”

Rachel considered this medical push as a hegemonic and homogenous view about Black women’s health, such that they are often perceived as having poor health, just as they are perceived in other contexts (Freeman et al., 2017). She explained that healthcare providers usually lump African American women together, without paying attention to each individual. She said, “Like I don’t have a history of it. You can’t like, um, basically stereotype me because I’m African American.” This way, they believe an instance of illness or behavior in one African American is present with others. This institutionalized practice further led to the silen- cing of these women, which is a long-term effect of racism in our society. Telither, in a similar experience, also encoun- tered the imposition of medicalized birth by her healthcare providers. She recalled the reaction of her nurses in the delivery room when she told them she wanted a natural birth:

I think the staff pushed more for different directions for my choices. So, like if I said I want to do a natural birth, they were like, “Why? Why would you want to go natural? We got drug for that and you won’t do this” . . . I think they have the assumption that we don’t know what our bodies are capable of.

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Telither considered her experience as one that invalidates her ability to make an informed decision about her maternal care. She attributed this experience to both her racial and gender identities.

Race and class – unfair treatment based on health insurance

The interest convergence tenet of CRT was foregrounded as women reported the influence of their racial identity, as it intersects with their socioeconomic status, in the quality of care they received. Unique, a 24-year old pregnant woman, in her narrative, said African American women begin to experi- ence differential treatment not only in the quality of care given to them but even based on the type of insurance they have:

Like when you’re asked what type of insurance you have and you feel like, “Oh, I have government insurance” and they like look at you differently or they treat you differently, different from if you had like private insurance or insurance through an employer or something like that.”

The fact that Medicaid is only accessible to low-income indi- viduals, and in Wisconsin a majority of these recipients are African Americans (Kaiser Family Foundation, 2019), put these women in a situation where they are constantly disen- franchised because of the intersections of race and class. While Medicaid offers benefits for low income individuals, for African American women, it can function as a reminder of their disenfranchisement and institutionalized practices that foster racism. Rachel further evidenced this insurance-based discrimination in her narrative:

So I feel like, yeah, I feel like this thing [race and class] is definitely real, they definitely judge you on that. They look at you and it’s like, “Oh well we’re not going to do much with them. We just gonna patch them up, get them okay, and throw them out of the door.” . . . I feel like that’s how they treat African-Americans. You don’t have the best insurance. A lot of us, don’t get me wrong, we’re in all different ranks of course, but like I’m in lower class so I can’t afford to, insurance puts us in different places.

Rachel’s narrative shows both an expression of lament and distrust in the healthcare system that allows a supposed help for minority through the prism of Medicaid. The issue even becomes more complicated because of the racial climate of the city, where there is evident racial segregation. Shirval articu- lates how Milwaukee as a city naturally positions African American women as low class, public insurance patients, resulting in low quality of care:

Ultimately [the way you are treated] I would say it depends on the type of insurance you have. And then we are talking about African American women a lot. And especially here is Milwaukee, if you’re talking about this region, I feel like there is a lot of African American women or Black women that’s in poverty and might need assistance, whether that’s needed, state insurance or whatever that looks like. And I feel like they are treated differently than someone with employers insurance . . . they [healthcare providers] can see or read into my history and find out if you have some form of education, you know, I feel like that, that, that sometimes they could make that separation . . . Not to say that I couldn’t be treated poorly just by looking at me and not knowing anything about me, but ultimately these people (healthcare provider)], I feel like, it definitely has a lot to do with, your insurance and what’s the first

thing they see from your records-your socioeconomic status, all of that.

Without mincing words, Shirval’s narrative unveiled the work- ings of race and class in the type of treatment African American get when accessing maternal care. While this is not new (Allen et al., 2014; Taylor, 2019), women’s narratives, here, show how covert racial discrimination in the healthcare system leads to mistrust, and poor treatment, which are factors con- sistently cited in women’s maternal crisis narratives (National Public Radio, 2017). Kevris furthered this argument in her narrative by saying:

I feel like it’s because of our race and the things that we’ve gone through. In America, there’s always been a difference in, you know, race, in the color of your skin. You know, it’s always been that way. Like if you’re white, you have more of a privilege and you are given more opportunities, you know, but if you’re Black and if your skin color is Black, no matter if you’re, you know, Black from Africa, like, have African roots, I feel like you’re still seen as lesser.

Clearly, discourse of systemic racism and the historical events of slavery and colonization were evident in Shirval’s narrative, as she attributed African American women’s experiences to what is considered “normal” in America – the ordinariness of racism (Delgado & Stefancic, 2012). Consequently, African American women’s experiences of discrimination in medical encounters are a reflection of the U.S.’s institutional practices that underserve racial minorities.

Race as a social concept – dismissed pain concerns because you are a strong Black woman

Being a Black woman did not only mean differential treatment for African Americans. For the women interviewed, it also meant that they had to endure pain beyond what they consid- ered normal because they were “strong Black women.” Delgado and Stefancic (2012) explained this ideology as the social con- struction of race, where African American women are not only treated based on science but also on how they have been historically constructed as strong. While this discourse of strength is traceable to the history of slavery, it has become a welcomed racial identity marker, even for African American women themselves. Yet, within the context of healthcare, this discourse leads to women’s disadvantage (Abrams et al., 2014). In the current study, this stereotype resulted in the undermin- ing or dismissing African American women’s concerns, espe- cially in relation to pain. Sadiat, a 23-year-old first-time mother, narrated her experience as follows:

At about one in the morning . . . I was just like, I like, this is not feeling right. I am not comfortable. . . . We went to the ER and I don’t know if it was because it was late that they just like were not taking their job seriously, but like the tone of voice, like I said, super nonchalant . . . disregarding my pain, and I remember one nurse is just like, “Well yeah, you’re pregnant.” . . . as a doctor, if I’m explaining my pain to you and the symptoms that I’m having, like I expect you to take me seriously. I don’t expect you to tell me, “Well yeah you’re pregnant.” “I know I’m pregnant. That’s why I’m here explaining my pain to you so I can make sure that my child is okay.”

Similarly, during labor and delivery, Ebony spoke of experien- cing excruciating pain that was repeatedly dismissed by her healthcare providers:

HEALTH COMMUNICATION 7

She was like, “No, you’re just being paranoid.” And I was like, “I still don’t feel well.” She was like, “Oh, you’re fine, you’re fine.” And I was like, “Something isn’t right.” And then I was telling her like, “I’m passing these, these chunks of blood clot.” They were like . . . “You’re fine . . . .” I’m still having problems and, in a strain, even after taking the narcotics, I’m still like damn pain, cramping bad. And she was like, “You’re fine. You know, you’re older. That’s why you know, you’re feeling like this.” And I was like, “That’s not what this is.” And all I kept telling her, “Something is wrong with [the baby]. Something is wrong with me.” She’s like, “You’re okay.” So, two weeks after he was born, I decided to go to the ER, and they told me that I needed a D & C [Dilation and curettage] because I still had some of my placenta in me.

Tragically, Ebony lost her baby while also having to go through emergency surgery following complications post-delivery. Similarly, Tabithe, a 20-year old mother of one, explained how she felt healthcare providers perceived African American women as deceitful about their pain level. When asked about how healthcare providers perceived pregnant African American women, she said:

African American woman are seen as lying about what type of pain we’re in and how bad it hurts. “Don’t tell me how bad I’m hurting. You are not inside of me.” And that’s how they always come at you . . . like you’re lying or exaggerating . . . they treat you like you’re lying or like it’s not that serious.

Tabithe’s story highlights how the dismissal of African American women’s concerns on the part of healthcare provi- ders’, exacerbates women’s lack of trust in healthcare providers and the healthcare system, leaving women feeling disempow- ered and less-valued.

Distrust – African American women as charity case

Under this theme, African American women expressed how they felt that their racial identity positioned them as a “charity case.” Even when healthcare providers provided what they considered quality care, because of their overall experiences, they wondered whether healthcare providers genuinely cared about them and their healthcare needs. In this way, the women viewed the quality of care provided to them as a favor to help the “helpless.” Consequently, these women reported that even “good” care provided to them was often accompanied with the notion of charity provided by whites to the helpless Blacks. In Unique’s narrative she said:

I think there’s racism everywhere, but I think there’s racism in the healthcare system . . . we’re just looked at differently . . . I think African American women are more looked at as a charity case in a way. They looked at us like, “It looks better if I help this lady lift weights because I’m Caucasian and I’m helping somebody different than me, so it’ll look better on my end if I help her.”

Unique reasoned that the care delivered to African American women during pregnancy is not aimed at their best interest, rather as a way that doctors, whom she framed as Caucasians, foster a positive image for themselves, so as “to look better.” Zee’s story was similar as she agreed African American women are often treated as low-class patients:

I just feel like people care about other races than our, than our own race. Uh, you know, they’re just like, “Well, we don’t care about the Blacks. Let’s just make sure that other races are okay.” Like, the Caucasian just make sure they’re okay before we make sure the

African Americans are okay. So, they basically like put us on the backburner.

Specifically, Zee believes that Caucasians get better treatment at the expense of African Americans, as African Americans are treated as inferior, thus, uncared for. In her narrative, Megan reasoned that African American women are treated poorly because whites have positioned them as inferior who should be “helped” When we asked Megan why she had this percep- tion about doctors, she said:

It’s just, I don’t know, like I never had that problem with a doctor, but it’s just a thought that crosses my mind too as well. Like, you know, “You [whites] sit and help us, but you feel like we just beneath y’all, like we don’t deserve it.” Like they think, some not all, but some doctors could possibly think, “We shouldn’t have to help because this money [for your healthcare] expenses is coming out of our pockets, we got to help y’all. We really don’t want to.

Megan, similar to other women in this study, reasoned that the problem of maternal crisis among African American women is rooted in systemic racism, to control the Black population so that whites may continue to dominate them. While this per- ception may be subjective, it exemplifies a bigger issue of mistrust in the healthcare system.

The Study’s findings show how racial identity impacts healthcare access and experiences for African American women during pregnancy, labor and delivery and in the post- partum period. Through implicit and explicit biases, healthcare providers’ communicative acts were identified as racially deni- grating and discriminatory toward women.

Discussion

Communication stands at the core of women’s narratives when reporting their experiences of racism in the way maternal healthcare services were provided to them. Communication strategies, acts, and dynamics culminate to form the platform through which racial discrimination is enacted and perceived (Kreps, 2006). Studying maternal healthcare experiences from a communication perspective helps to center the voices of women, and CRT helps to uncover ways in which structural racism is communicatively enacted.

In revealing structural practices that inherently advance racial discrimination in the healthcare system, the biomedical approach was critiqued in women’s narratives. The biomedical structure of the U.S. healthcare system, as an institutionalized form of racism, paves the way for the denigration and the dismissal of African American women’s choices in maternal care. Ultimately, the biomedical approach, as a healthcare “standard” practice, creates a space that dehumanizes women, rendering them incapable of making decisions that concern their own health and the health of their babies. Functioning in a hegemonic healthcare system, positions healthcare providers as the only ones who can make decisions on behalf of women, through structured practices that are not tailored to meet women’s unique needs, leaving African American women feel- ing incapacitated and dehumanized (Freeman et al., 2017).

Through the interest convergence tenet of CRT, our data reveals how the supposed help for the minority groups further places them on the margins of society for less than optimal care

8 C. T. ADEBAYO ET AL.

during pregnancy. Racial discrimination manifests through healthcare providers’ disposition toward public insurance, that is, Medicaid, as women consistently reported discrimina- tory treatment based on their type of insurance. In some cases, they were denied care, when the care requested was deemed by a provider as being unnecessary. Again, CRT helps to uncover how systemic practices aimed at promoting health equities are disguised forms of racial discrimination because of the way they are enacted.

CRT further enabled us to see how dominant cultural norms, especially socially constructed racial and gender expec- tations, negatively impact African American women’s maternal care (Freeman et al., 2017). The cultural notion of women as “natural endurers” of pain alongside the racial stereotype of Black women as extraordinarily strong impacted how African American women’s pain was perceived and managed, espe- cially during labor and delivery. African American women are indeed often perceived as possessing extraordinary ability for putting up with pain (Davis, 2015; Stewart, 2017; Watson- Singleton, 2017). The strong Black woman, a cultural dis- course, evolved from the historical experiences of African American women as they assumed different roles (wives, mothers, breadwinners, activists; Parks, 2010; Woods- Giscombé, 2010) during the era of slavery, and was developed as a coping discourse to upend the notion of promiscuity or “baby mamas” ascribed to African American women (Parks, 2010). This discourse has been found to work to the disadvan- tage of African American women especially in the healthcare setting (Ashley, 2014; Woods-Giscombé, 2010). Perceived for their supernatural strength, African American women have continued to experience a disenfranchised form of healthcare, one that undermines or dismisses their concerns as patients within the healthcare setting. The dismissal of pain under the stereotype of being strong is a major theme of maternal crisis narratives from Black women in the United States (National Public Radio, 2017). Until healthcare providers begin to con- front implicit biases toward African American women, women will continue to experience implicit racism in maternal care and poor maternal health outcomes for African American women will persist.

Distrust in the healthcare system has been a long-standing experience of African Americans, traceable to the Tuskegee study of 1932 and many more unethical treatment of Blacks in medical research (Scharff et al., 2010). As a result of this, women in this study also reported the same perception, albeit not because they were discriminated against. They already had an existing perception that the healthcare system, just like any other social institution in the U.S., is set up against them, and to their disadvantage. Consequently, even when healthcare providers are putting up their best practice, there is still some level of distrust in the way those services are perceived (Durant et al., 2011). This may lead to unwillingness to comply with healthcare providers’ recommendations (Adebayo et al., 2020) This experience shows how damaging systemic racism can impact patient relationship with their healthcare providers.

Consistent with the argument of Kreps (2006), communication functions as the tool for uncovering racial disparities in the healthcare. Similarly, our study reveals that the enactment of structural racism and different institutional practices that

marginalize minority groups are communicatively performed. For instance, the women who reported different forms of racial discrimination made sense of them through the way their health- care providers communicated to them both verbally and non- verbally. Essentially, communication is not merely a way through which we make sense of healthcare practices, it is the primary platform of operation for provider-patient relationships in every form.

In identifying the role of communication in healthcare context, health communication scholars can be positioned to address these issues through communication concepts (Parker & Kreps, 2005). Our study has led to the develop- ment of important knowledge about healthcare practices that underserve African American women, which include ignoring women’s concerns under the guise of standard practice and structural racism. As evidenced in our study, the continuation of these practices lead to medical mistrust and in some cases fatal complications, exacerbating poor maternal and infant health outcomes.

Study implications for healthcare providers and health communication scholars

Findings from this study show that healthcare providers may not be aware of some standard practices in the health- care system that inherently underserve African American women. Thus, we suggest that policies that are developed by healthcare administrators should target the needs of African American women, as well as other minority popu- lations. To create a healthcare system that serves African American women, healthcare providers and administrators should continuously receive training in intercultural aware- ness, addressing issues such as racism, health inequities among minority population, as may be manifested in healthcare institutional practices.

In communication scholarship, our study’s findings contri- bute the body of knowledge confirming the central influence of communication in healthcare delivery, as women in this study identified their experience of racial discrimination in health- care structures and practices, they made sense of them through communication. In reporting how healthcare providers per- ceive them, African American women consistently reported communicative acts, both verbal and nonverbal, as indicators of how they are perceived. Communication functions at the heart of healthcare delivery. Specifically, with the end goal of addressing maternal mortality crisis among African American women, communication scholars are better positioned to iden- tify communication markers, discourses that may significantly affect healthcare processes, including the interpretation of healthcare providers’ attitudes toward patients.

Racial discrimination is not only existent in the health system. It is everywhere; in universities, in workplaces, and in health care. As such, issues of racial disparities should be treated from an intersectional perspective, through active collaboration between individuals and groups from different sectors of society. Facilitating such intersectoral collabora- tion that will effectively address racial health inequities, is an important research focus for future community engage- ment research.

HEALTH COMMUNICATION 9

Notes

1. In this study, we do not use the terms “Black” and “African American” interchangeably. Whenever the term “Black” is used, we are referencing all people of African descent, including African Americans, while the use of African Americans specifically speaks to African Americans in the United States (See American Psychological Association, 2019, p. 143).

2. This is a type of healthcare delivery that displays healthcare dis- parities based on racial differences, especially between Black and white patients (Goodman et al., 2016).

3. We conducted a pilot study to explore if both Black immigrant women and African American women share similar maternal care experiences. The findings showed that African American women’s experiences are different from that of Black immigrant women. We included the data of the African American women who partici- pated in the pilot

Funding

This work was supported by the Department of Communication, University of Wisconsin-Milwaukee [N/A].

ORCID

Comfort Tosin Adebayo http://orcid.org/0000-0002-1288-2296 Erin Sahlstein Parcell http://orcid.org/0000-0001-6922-8108

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12 C. T. ADEBAYO ET AL.

Journal of Midwifery & Women’s Health www.jmwh.org Original Research

Listening to Women: Recommendations from Women of Color to Improve Experiences in Pregnancy and Birth Care Molly R. Altman1,2, CNM, PhD, MPH , Monica R. McLemore2,3, PhD, MPH, RN , Talita Oseguera3, CNM, MSN, Audrey Lyndon4, PhD, RN , Linda S. Franck 2,3, PhD, RN

Introduction: Women of color are at increased risk for poor birth outcomes, often driven by upstream social determinants and socially structured systems. Given the increasing rate of maternal mortality in the United States, particularly for women of color, there is a pressing need to find solutions to improving care quality and access for racially marginalized communities. This study aims to describe and thematically analyze the recommendations to improve pregnancy and birth care made by women of color with lived experience of perinatal health care.

Methods: Twenty-two women of color living in the San Francisco Bay Area and receiving support services from a community-based nonprofit organization participated in semistructured interviews about their experiences receiving health care during pregnancy and birth. Interviews were audio-recorded and transcribed, and transcripts were analyzed using thematic analysis to highlight recommendations for improving perinatal care experiences.

Results: Participants shared experiences and provided recommendations for improving care at the individual health care provider level, includ- ing spending quality time, relationship building and making meaningful connections, individualized person-centered care, and partnership in decision making. At the health systems level, recommendations included continuity of care, racial concordance with providers, supportive health care system structures to meet the needs of women of color, and implicit bias trainings and education to reduce judgment, stereotyping, and discrimination.

Discussion: Participants in this study shared practical ways that health care providers and systems can improve pregnancy and birth care expe- riences for women of color. In addition to the actions needed to address the recommendations, health care providers and systems need to listen more closely to women of color as experts on their experiences in order to create effective change. Community-centered research, driven by and for women of color, is essential to improve health disparities during pregnancy and birth. J Midwifery Womens Health 2020;65:466–473 c© 2020 by the American College of Nurse-Midwives.

Keywords: patient-centered care, racism, continuity of patient care, decision making, thematic analysis

INTRODUCTION

Women of color are at increased risk for poor birth outcomes, such as preterm birth and low birth weight, irrespective of income or other sociodemographic factors.1-3 Multiple factors have been implicated in these disparities at the indi- vidual level, often driven by upstream social determinants and socially structured systems.4-7 Given the increasing rate of maternal mortality in the United States, particularly for women of color, there is a pressing need to find solutions to improving care quality and access for racially marginalized communities.8,9

1University of Washington School of Nursing, Seattle, Washington 2Preterm Birth Initiative, University of California San Francisco, San Francisco, California 3University of California, San Francisco School of Nursing, San Francisco, California 4New York University Rory Meyers College of Nursing, New York, New York Correspondence Molly R. Altman Email: [email protected] ORCID Molly R. Altman https://orcid.org/0000-0002-0453-0469 Monica R. McLemore https://orcid.org/0000-0001-6539-4256 Audrey Lyndon https://orcid.org/0000-0003-2215-4273 Linda S. Franck https://orcid.org/0000-0003-4291-9181

There is increasing evidence that health care system fac- tors play a role in the health care experience and pregnancy and birth outcomes for women of color.10-12 In the con- text of pregnancy and birth, women of color have repeatedly shared that they are not listened to and/or that their concerns are ignored.13-17 Although women seek trustworthy and re- spectful care, not receiving such care can compound stress and discourage access to necessary services.13,18,19 Women of color have rarely been directly asked about their prefer- ences and ideas for patient-provider and health care system improvement.14 As experts on their experiences, women of color have the ability to share insightful knowledge about their own health, which can guide health care systems to better sup- port and respect people of color through the pregnancy and birth experiences.20

As part of a larger study exploring experiences inter- acting with health care providers during pregnancy, birth, and postpartum,21 women of color in San Francisco de- scribed how providers’ power influenced what information was shared in the context of respect, autonomy, and decision making. Participants also provided recommendations for how the health care system could be improved to better support women of color. The purpose of this report was to describe and thematically analyze what participants shared as issues with the current health care system and their described rec- ommendations for change.

466 1526-9523/09/$36.00 doi:10.1111/jmwh.13102 c© 2020 by the American College of Nurse-Midwives

✦ Women of color provided recommendations for improving care during pregnancy and birth, aimed toward change in both individual interactions with health care providers and the larger health care system.

✦ Providing person-centered care and valuing a person’s lived experience are key to improving trust for women of color.

✦ Ensuring access to racially concordant care by supporting more health care providers of color through education and in the workforce has the power to improve the experience and outcomes for women of color.

✦ Centering the experiences of those affected by health disparities is key for improving pregnancy and birth outcomes.

METHODS

Detailed methods for the larger project have been de- scribed elsewhere.21 In brief, the research team recruited self- identified women of color from a community-based organi- zation in San Francisco, California, that provides health and wellness services to families with low income. One-to-two– hour semistructured interviews were conducted with women from 6 weeks to one year postpartum. These interviews were transcribed verbatim and then analyzed using constructivist grounded theory methods.22,23

For this secondary analysis, the interview transcripts were further analyzed using thematic analysis techniques as de- scribed by Braun et al24 to identify issues with the health care system and associated recommendations for health care improvement that women provided in response to a prompt within the interview guide. Transcripts were read thoroughly for additional content specifically related to recommenda- tions for health care providers or health care systems. Ini- tial codes were generated and then analyzed within and across transcripts to form preliminary themes. The prelim- inary themes and subthemes were then further developed with illustrative exemplars from transcripts. Themes and sub- themes were then named and defined. The secondary analy- sis was performed by 2 members of the research team (first and third authors), with findings reviewed and commented upon by the larger team. Reflexivity included continued as- sessment of researcher positionality within the context of how women responded to the interview prompt (all researchers had nursing and/or nurse-midwifery training, with 2 identify- ing as Black and 3 as white). Human participants’ approval was granted by the University of California, San Francisco. All par- ticipants provided informed consent prior to interviews and received a $50 gift card for their time and involvement.

Of note, although the authors recognize that not all birthing persons identify as women, the participants in this study all identified with she and her pronouns and the titles woman and mother. For this reason, the authors use these terms in the context of this report of research findings.

RESULTS

Twenty-two women of color participated in the larger study, and all were included in this analysis. Participants self- identified as African American or Black (non-Hispanic) (8), Latina or Hispanic (4), Native American (1), Asian (3), and multiracial or mixed race/ethnicity (6). Those who identified as multiracial or mixed race/ethnicity used the

following descriptions: Black/Hispanic (2), Black/Samoan (1), Black/Filipino (1), white/Latina (1), and other (Chero- kee/White/Puerto Rican) (1). Participants were aged between 23 and 39 years and had a total of 55 birth experiences. All par- ticipants received support services at the community-based organization (such as case management, childcare, and finan- cial assistance).

Participants described their pregnancy and birth expe- riences and highlighted ways to improve individual patient- provider interactions with different types of health care providers, including obstetricians, nurse-midwives, nurses, and medical residents. Additionally, they described interac- tions with several different clinics, hospitals, and health sys- tems, both public and private, providing recommendations at the systems level for improving care (Table 1).

Interacting with Individual Health Care Providers

Participants shared insight around interacting with health care providers and recommendations for health care improve- ment, including the following subthemes: spending quality time, relationship building and making meaningful connec- tions, individualized person-centered care, and partnership in decision making.

Spending Quality Time

Participants strongly desired that health care providers spend quality time with them during the course of their appoint- ments and during their hospital experience. Quality time, in this context, was defined as time in which participants felt they were given adequate time and attention from their providers to feel valued and listened to. Many participants shared expe- riences of being rushed by providers and inadequate time to receive individualized care. The experience of being rushed was often interpreted negatively as a value judgment, in which their time and needs were less worthy than those of other peo- ple: “It was like more, ‘Oh, okay. Let’s just hurry up and get her over with and push her out,’ you know what I mean?”

Participants felt seen and cared for when health care providers spent time at the bedside, particularly in the con- text of understanding that providers had competing job du- ties and limited time. One participant shared that, when in a particularly stressful moment during her labor, “ …my doc- tor just came beside me, rubbed my head and says, ‘It’s going to be okay.’ [ …] She took that one little second to come calm me down. And that’s what I liked.” That “one little second”

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Table 1. Recommendations, Concerns Addressed, and Proposed Actions Curated from Participant Interviews

Recommendation Concerns addressed Proposed actions

Interactions with individual health care providers

Spending quality time Wanting to not feel rushed Have longer visit length with longer face-to-face times

with providers

Wanting physical time with providers Make eye contact

Wanting to be seen and heard Use reflective listening techniques

Relationship building Wanting an emotional connection Get to know patients as individuals

Wanting to be known and familiar to providers Take notes to remember at subsequent visits

Wanting providers to start and participate in

genuine conversation

Include questions about life, well-being

Value patients’ experiences

Individualized

person-centered care

Wanting to be treated as a person Show respect and dignity

Wanting to know that their health, not just their

fetus’s health, mattered

Focus on both patients, not just fetus

Wanting providers to factor in external influences

and barriers into care

Inquire about and address social determinants of health,

particularly structural impacts such as poverty,

housing, and transportation issues that may affect care

Increase knowledge of impact of social determinants

of health on outcomes and access

Partnership in decision

making

Wanting experiences and knowledge to be valued

and respected

Honor patient stories and lived experience as equal to

theoretical knowledge

Wanting autonomy in decision making Provide all information and support patient decisions

Use informed consent for all professional touch and

procedures

Interactions with the health care system

Continuity of care Wanting to see same providers who know them Use patient panels or other continuity models

Not wanting to have to repeat history and story Have mechanism for sharing details across providers

Provider racial and ethnic

concordance

Needing providers who look like them and have a

shared cultural identity to feel safe

Support education and recruitment of providers of color

across all levels of care

Wanting a more diverse workforce, as there are

few providers of color available

Recruit from historically Black colleges and universities

Precept and/or mentor students of color

Support career fairs at high schools in diverse

neighborhoods

Health system structure

issues

Needing a less fragmented care system; wanting

services consolidated in one location

Streamline services and referral systems to reduce

burden on patients

Add services to existing locations

Needing consistency in insurance coverage and

recommended care, in response to having

recommended care not a covered benefit

Push for comprehensive insurance coverage for all

recommended maternal health services through

lobbying and policy change

Wanting appointment scheduling and time spent

in appointment reflecting needs and barriers

faced by people of color

Provide opportunity for evening and weekend

appointments

Remove late penalties

Provide flexibility in appointment times

Provider education Needing more effective implicit bias trainings Review your own implicit biases

(https://implicit.harvard.edu/implicit/education.html)

Incorporate antiracism trainings into education and

workplace settings

(Continued)

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Table 1. Recommendations, Concerns Addressed, and Proposed Actions Curated from Participant Interviews

Recommendation Concerns addressed Proposed actions

Needing revisions of textbooks and coursework

that perpetuate structural racism

Choose texts that address structural racism and the

colonial impacts on health care education

Write to publishers of outdated texts to request

necessary changes

transformed her experience in a positive light. Time spent face-to-face with providers, particularly in the setting of be- ing listened to and heard with empathy, was seen by women of color as a valuable mechanism for building trust and mutual respect.

Relationship Building and Making Meaningful Connections

Participants in this study shared a desire for a connection with, to know and be known by, and to have a sense of shared humanity recognized by their health care providers. For many participants, making connections and building rela- tionships took the form of having casual, yet meaningful, con- versation about shared interests or experiences. One partici- pant recommended providers start and participate in genuine conversations:

I could sit and I could talk to somebody [ …] “Oh, you know, hey. How’re you? You have kids too?” and stuff. And so that’s what gets people a little bit more comfortable [ .. .] Like just starting a conversation … and it’s just genuine, you know?

Similarly, participants shared a desire to be known by their health care providers, as one participant defined as knowing names and history: “I think when you bring your child to a doctor it should be someone who knows your child’s name, al- ready knows what’s going on with the baby, and gets personal.” Interactions were meaningful for women when providers con- veyed a sense of empathy and compassion, particularly in ways that created emotional connection. One participant, who recently gave birth to her second child, shared this when de- scribing the lack of compassion she felt from her provider:

When you’re talking to someone about their child, even if you don’t have kids, having that compassion and under- standing and emotional connection, empathy and sympa- thy for someone that is dealing with the care of their child and the well-being, that is what I think was lost [from the interaction].

Participants identified actions health care providers could take to build relationships and create connection, including sharing commonalities, taking time to know and see individ- uals as persons, and hearing their concerns with empathy and compassion.

Individualized Person-Centered Care

Alongside spending time and feeling connection with health care providers, participants wanted to receive care that was in- dividualized for them and included person-centered interac-

tions. Participants needed to be recognized as a person who was valued and whose knowledge was respected. As one par- ticipant shared, a lack of individualized care and connection had a direct impact on hope and shared decision making: “So, if you’re talking to me as though I’m just a number, you’re tak- ing away my hope of my baby. Don’t feed me lies, but don’t take away from my hope or take away from me helping you in the care.” Participants wanted to know that their health and wellness, not just their unborn fetus’s, mattered to their providers. A mother of 2 children shared this about her pre- natal care experience: “They were more concerned about the pregnancy, not really [ …] me as a person. I’m not just a car- rier. Be concerned about me too.”

Participants felt that factors external to the health care sys- tem often influenced how care was accessed and received, and they noticed when health care providers recognized these in- fluences and made room for individualized care. One partic- ipant described her positive experience with a provider who recognized her unique needs and supported her:

So, I’m often late because I just have so much to deal with 3 little children. So, like if I’m late to an appointment and I call they’re like, “Yeah, she’s still wanting to see you.” And I know that’s not always the case with a lot of doctors. She’s just very supportive and she takes the time to go kind of above and beyond.

Person-centered care that recognized people as fully hu- man, not numbers or vessels, but also as valued individuals, was considered essential to providing a care experience in which patients felt hopeful, included, and honored.

Partnership in Decision Making

Participants wanted not only to be heard and respected but also to be included in decision making throughout their care experience. Having their knowledge respected was valued by many of the participants: “I think that the doctors should listen to us more, you know? Some of us do kind of know what our babies need.” Participants expected autonomy and decision-making power, to be treated with respect, and care that was individualized to their own needs: “ … it’s making sure that the patient has their needs met and their requests honored. Like allowing somebody to make their own deci- sions and be autonomous and, you know?”

Autonomy and decision-making power during pregnancy and birth were highly valued by participants and were ex- pected as part of the relationship with health care providers. When these rights were not afforded to them, participants felt disempowered and frustrated, which then decreased trust in individual providers and even in the health care system.

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Interacting with the Health Care System

Participants identified system-level barriers, such as frag- mented care, insurance problems, and discrimination that they perceived adversely affected their care, and highlighted several health system–level recommendations for improv- ing care for women of color. The dominant subthemes in- cluded continuity of care, racial concordance with health care providers, supportive health care system structures to meet the needs of women of color, and implicit bias train- ings and education to reduce judgment, stereotyping, and discrimination.

Continuity of Care

Consistency of health care providers and continuity of care, which provides the time and space needed for relationship building, was highlighted as an important factor to improve at the systems level. Many participants highlighted experiences in which they needed to tell their story repeatedly to differ- ent people, only to not see the same providers again; there was a sense of disruption to care and lessened quality of care provision:

I don’t like they are different nurses or doctors. They don’t know what happened the previous visit. So, when they asked me is she okay, I don’t know. [ .. .] I don’t know if she’s better than the last visit because you don’t know.

Participants highlighted how health care provider consis- tency allowed for relationship building and increased individ- ualized care. One participant shared her experience with mul- tiple providers and struggling with wanting less exposure for her newborn:

You [shouldn’t] have to get used to the 5 different peo- ple during your 2-day stay. So, give one nurse these rooms and another nurse these [other] rooms. [ .. .] It’s just a brand new baby. You don’t want all these people handling your baby, first off. Even though they’re nurses, it doesn’t matter.

Inconsistency in health care providers created an envi- ronment for many participants that increased mistrust of provider knowledge and feelings of vulnerability in having to share their story repeatedly. Participants saw the connection between continuity of care and ability to build relationships with providers, which opened up opportunity to increase trust and connection.

Health Care Provider Racial and Ethnic Concordance

Women of color in this study highlighted the importance of having a health care provider who looks like them and under- stands their lived experience as part of their care team. Partic- ipants shared feeling safer and more connected with providers of color and noted feeling suspicious and/or fearful of receiv- ing judgment from white providers:

When I see somebody who is of color, we have more of a connection without even saying anything to each other. And so it’s like, “Oh, okay,” you know? It’s so different, and then when somebody that is Caucasian comes in, I

don’t know. It just—everything just feels so dry like really short,—you know what I mean? [ .. .] That’s how I feel with some of the Caucasians—because of the experience that I’ve been through.

Participants highlighted the need for diversification of the health care provider workforce. One participant shared her observation that it is difficult to find providers of color and that there is a need to have more available to communities:

Well, maybe just that I mean it would be great if there were more doctors across like a spectrum of different identities; more people in the medical profession because it can be eas- ier to get or to feel a sense of equality if there’s just more di- versity in general. It is sometimes hard to run into like Black women doctors as regularly as it is other folks. I think that would be awesome if there were just more.

Women of color in this study found difficulty in connect- ing with white health care providers, and they often expressed fear of judgment and potential or actual experiences of dis- criminatory care. By connecting with providers of color who shared commonalities of experience and/or an understand- ing of marginalization, participants felt more comfortable and therefore were more trusting of the care they received.

Supportive Health System Structures

Participants highlighted a need for health care systems to be supportive and adaptable for the specific needs of women of color, particularly related to co-location of services, insurance transferability, flexibility for appointment times, and wanting to see efforts toward reducing implicit bias within the health system. When patients had to travel to different locations for various aspects of care, there was increased potential for ex- acerbation of illness for patients, especially those with limited resources. One participant described a need for better access to multiple services during her high-risk pregnancy:

I feel if you knew I was high risk then you should have helped me with whatever resources I needed, not sending me to another doctor for my blood pressure medicine, not sending me to another psychologist when I’m stressed, run- ning me all over the place.

Along with wanting co-located services, issues around in- surance coverage and not having recommended care as a cov- ered benefit arose for several women. One participant who relocated during her pregnancy, but whose public insurance restricted her to one particular county, needed her insur- ance coverage to match care recommended by health care providers:

It would just be nice if you could make sure that what I’m getting is what I’m getting and that I don’t have to come back for another BS appointment and be told that I’m not covered and have to come back next time.

Not only was denial of care frustrating, the time taken to travel repeatedly to a different county for care served as an additional barrier to receiving appropriate care.

Participants also wanted health care providers to be con- siderate of time, both in scheduling clinic appointments and

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in having to wait to be seen. Despite immense efforts, partici- pants’ caregiving responsibilities, employment commitments, and transportation issues sometimes affected their ability to arrive on time for appointments with consistency. Requesting leniency for when delays occurred and participants could not arrive exactly at their appointment times was common:

You know, getting around, transportation and stuff like that and trying to get here and there, and it’s just like I have to be seen every week. You need to have some kind of consid- eration if I’m a little late.

Education to Reduce Judgment, Stereotyping, and Discrimination

An important subtheme that emerged regarding recommen- dations for health services was aimed at addressing stereotyp- ing, judgment, and discrimination that existed at both indi- vidual and system levels for women of color. As shared by one participant regarding bias and equitable treatment:

Just like how they would treat the next person that they see every day. Don’t see me for somebody different. I’m a human being just like you. You’ve made mistakes. Just be- cause of my mistakes are a little bit different than yours doesn’t mean that you’re different than I am, you know? [ …] It doesn’t matter what color you are. Everybody has to be treated the same way.

In reflecting on their individual struggles around in- equitable care as patients and a desire to decrease racism and discrimination in health care settings, participants recom- mended implicit bias training and education for all health care workers. One participant shared her recognition that health care providers are not adequately trained to deal with their bi- ases:

It’s really interesting to recognize that maybe there isn’t enough training to try to deal with those biases in these professions before they’re actually out there in the field, ac- tually like implementing their biases in ways that like re- ally affect people. [ .. .] I doubt there’s substantial diversity training.

Furthermore, participants recommended trainings that moved beyond lecture and brought in lived experience:

[Training shouldn’t be] like just one day where you go and listen to some statistics. Like make you listen to stories. Like you need to interact with actual people to recognize that there is no one type of one like person, not all of this kind of person are going to be this way. [ .. .] So, if doctors are coming in with their own set of discriminatory beliefs then that’s going to have an impact on their patients.

Participants disputed the idea that medical and nursing education in the United States is free from bias and recom- mending updating textbooks to better reflect diversity and reduce prejudicial teaching. One participant described how many biases in education are likely introduced through text- books that represent structural racism and othering:

I mean that starts in school. It starts with the chapter in your book that’s like, “Oh, this is how to greet an African

American.” It’s like, “Here’s how to greet a Hispanic per- son. This is what Hispanic people believe.” [ .. .] And I’m like, “No, wait. That’s not what I think at all.” You know? Like that’s crazy. It starts with the books. Like that chapter needs to go.

DISCUSSION

Participants in this study highlighted several recommenda- tions for improvement in patient-provider interactions, in- cluding spending time engaging with patients, connecting and building relationships, providing individualized women- centered care, and being open to a true partnership in deci- sion making. Systems-level recommendations included hav- ing opportunity for continuity of care, health care provider availability that allows for racial concordance, and support- ive health services structures that enable women of color to more easily and effectively receive needed services. As judg- ment and discrimination played a role in participants’ experi- ences, health system recommendations also included training for providers and removing biased language from textbooks and coursework.

Many of the recommendations shared by participants have support in the existing literature. Evidence in support of person-centered care is extensive, particularly in the repro- ductive health arena.25-29 Elements of person-centered care, including individualized care, communication, creating part- nerships in autonomy and decision making, and building re- lationships, are well documented as ways to improve the ex- perience and quality of health care, especially with women of color.14,29,30 Respectful perinatal care, in relation to ex- periences of respect, autonomy, and mistreatment, has also been extensively studied and reported upon.14,26,30 Systems- level issues such as fragmented care, inflexible schedules, and long wait times are widely known as issues in the current health care system, often disproportionately affecting people of color.13,31 Potential solutions that have been shown to im- prove care experience include care navigation and an empha- sis on continuity of care.32-34

The presence of racism and discrimination in participant encounters was not surprising and illuminates a disturbing reality that participants still experience multiple perva- sive episodes of discriminatory care. The fact that several participants brought up the need for health care provider training, without knowledge that these trainings exist and are considered a compulsory part of continuing education for most health care facilities, further demonstrates how trainings often do not effect change in behavior.35,36 Other modalities for reducing judgment and discrimination in providers are needed to create spaces where women of color feel safe to receive care. Experience-based co-design is one promising participatory approach that aims to change health systems by employing patient experience as a tool to inform changes in health care policy and clinical practice.37,38

Racial concordance and the availability of health care providers of color have been documented as a modality for increasing trust and respect for people of color.39,40 Learn- ing and practicing environments are often perceived as un- safe and unsupported because of discrimination across pro- fessional relationships and the burden of often being the only

Journal of Midwifery & Women’s Health � www.jmwh.org 471

learner or provider of color.41,42 Furthermore, like patients of color who desire race concordant care, learners of color do not see themselves reflected in the faculty in predominantly white institutions, which provide the majority of health care train- ing programs.43 There is a great need for increasing opportu- nity and decreasing barriers for people of color to succeed and thrive as providers, not only for providers themselves but also for patients who deserve unbiased and compassionate care.

A major strength of this study is the diverse sample of women of color from varying backgrounds who were able to provide their insight from within several health care systems. In addition to racial and ethnic diversity, the study includes 55 birth experiences across a wide range of health care providers, clinic structures, and hospitals in the Bay Area. Limitations in- clude generalizability because of the small locality and sample size. The use of thematic analysis within secondary analyses has its own limitations, such as bias related to the original in- terview methodology and research questions; however, mea- sures were taken to avoid these pitfalls, and developed themes were confirmed by multiple authors in separate analyses.24 Despite these limitations, the experiences of these participants are insightful and provide actionable steps for improving the health care experiences for women of color during pregnancy and birth.

Participants in this study shared specific and practical ways in which health care providers can improve pregnancy and birth care for women of color. In addition to the direct implications of these recommendations, there is a need to lis- ten closely to the voices of women of color as experts on their experiences in order to create effective and actual change. Community-centered research driven by and for women of color is essential to improve health disparities around preg- nancy and birth.

CONFLICT OF INTEREST

The authors have no conflicts of interest to disclose.

ACKNOWLEDGMENTS

This research was supported by the University of California, San Francisco Preterm Birth Initiative Transdisciplinary Post- doctoral Fellowship, funded by Marc and Lynne Benioff and the Bill and Melinda Gates Foundation. We thank our com- munity partnering organization, Homeless Prenatal Program, and the participants who shared their stories and experiences to advance health equity. This work was presented in part at the American Public Health Association’s Annual Meeting & Expo (November 2018, San Diego, CA) and the Ameri- can College of Nurse-Midwives Annual Meeting & Exhibition (May 2019, Washington, DC).

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Journal of Midwifery & Women’s Health � www.jmwh.org 473

Title: More than a “Number”: Perspectives of Prenatal Care Quality from Mothers of Color and

Providers

Authors’ Names and Affiliations:

Sheryl L. Coley, DrPH1,2, Jasmine Y. Zapata, MD, MPH3,4, Rebecca J. Schwei, MPH2,5, Glen

Ellen Mihalovic, BS2, Maya N. Matabele2,6, Elizabeth A. Jacobs, MD, MAPP2,7, Cynthie K.

Anderson, MD, MPH8

1 Health Disparities Research Scholars Program, University of Wisconsin Madison, Madison, WI

2 Department of Medicine, University of Wisconsin Madison, Madison, WI

3 Department of Pediatrics, University of Wisconsin Madison, Madison, WI

4 Preventive Medicine and Public Health Residency Program, University of Wisconsin Madison,

Madison, WI

5 BerbeeWalsh Department of Emergency Medicine, University of Wisconsin Madison,

Madison, WI

6 University of Wisconsin Milwaukee, Milwaukee, WI

7 Dell Medical School, University of Texas Austin, Austin, TX

8 Department of Obstetrics & Gynecology, University of Wisconsin Madison, Madison, WI

Corresponding Author:

Sheryl L. Coley, DrPH

University of Wisconsin Madison School of Medicine and Public Health

610 Walnut Street, WARF Building 9th Floor, Suite 957

Madison, WI 53726

Phone: 919-698-0709

Email: [email protected]

Acknowledgments

The authors thank Drs. Jennifer Edgoose, Deborah Ehrenthal, and Jonas Lee for comments in the

early design of the study. Thanks goes to Ryan Garske for work in preliminary analyses. This

project was supported, in part, by the following sources: National Institute of Child Health and

Human Development (NIH/NICHD) Research in Health Disparities Program, grant

5T32HD049302; University of Wisconsin-Madison Departments of Obstetrics and Gynecology,

© 2017 published by Elsevier. This manuscript is made available under the Elsevier user license https://www.elsevier.com/open-access/userlicense/1.0/

Version of Record: https://www.sciencedirect.com/science/article/pii/S1049386717301044 Manuscript_a9812a600a4d977022985324c53d793d

Medicine, Family Medicine and Community Health, and Pediatrics; University of Wisconsin

Health Innovation Program, School of Medicine and Public Health from The Wisconsin

Partnership Program, and the Community-Academic Partnerships core of the University of

Wisconsin Institute for Clinical and Translational Research (UW ICTR) through the National

Center for Advancing Translational Sciences (NCATS), grant UL1TR000427. This content is

solely the responsibility of the authors and does not necessarily represent the official views of the

NIH nor NICHD. These funding agencies had no input with data collection, analyses, nor writing

of this manuscript for this study.

Declaration of Conflicting Interests: The authors have no conflict of interest in the data

collection, analyses, nor writing of this manuscript.

Dr. Coley had full access to all the data in the study and takes responsibility for the integrity of

the data and the accuracy of the data analysis.

1

Title: More than a “Number”: Perspectives of Prenatal Care Quality from Mothers of Color and

Providers

Abstract:

Introduction: African-American mothers and other mothers of historically underserved

populations consistently have higher rates of adverse birth outcomes than White mothers.

Increasing prenatal care use among these mothers may reduce these disparities. Most prenatal

care research focuses on prenatal care adequacy rather than concepts of quality. Even less

research examines the dual perspectives of African-American mothers and prenatal care

providers. In this qualitative study, we compared perceptions of prenatal care quality between

African-American and Mixed-Race mothers and prenatal care providers.

Methods: Prenatal care providers (n=20) and mothers who recently gave birth (n=19) completed

semi-structured interviews. Using a thematic analysis approach and Donabedian’s conceptual

model of health care quality, interviews were analyzed to identify key themes and summarize

differences in perspectives between providers and mothers.

Findings: Mothers and providers valued the tailoring of care based on individual needs and

functional patient-provider relationships as key elements of prenatal care quality. Providers

acknowledged the need for knowing the social context of patients, but mothers and providers

differed in perspectives of “culturally sensitive” prenatal care. Although most mothers had

positive prenatal care experiences, mothers also recalled multiple complications with providers’

negative assumptions and disregard for mothers’ options in care.

Conclusions: Exploring strategies to strengthen patient-provider interactions and communication

during prenatal care visits remains critical to address for facilitating continuity of care for

2

mothers of color. These findings warrant further investigation of dual patient and provider

perspectives of culturally sensitive prenatal care to address the service needs of African-

American and Mixed-Race mothers.

Introduction

Racial disparities in adverse birth and obstetrical outcomes between African-American and

White mothers are well-documented (Bryant, Worjoloh, Caughey, & Washington, 2010;

Hamilton, Martin, Osterman, Curtin, & Mathews, 2015; US Office of Minority Health, 2012).

African-American mothers are also consistently less likely to receive adequate prenatal care in

comparison to White mothers nationwide (Bryant et al., 2010; US Department of Health and

Human Services, 2013), and they are approximately 2.3 times more likely than non-Hispanic

White mothers to either initiate prenatal care late in the third trimester or not obtain prenatal care

at all (US Office of Minority Health, 2012). Although research is inconclusive about how

prenatal care reduces birth outcome disparities (Walford, Trinh, Wiencrot, & Lu, 2011), previous

studies found associations between inadequate prenatal care utilization and adverse outcomes in

preterm births, low birth weight births, and neonatal mortality (Cox, Zhang, Zotti, & Graham,

2011; Kitsantas & Gaffney, 2010).

Despite the extensive research on prenatal care, fewer studies investigate concepts of prenatal

care quality and perspectives of African-American mothers. Most studies primarily focus on

adequacy of prenatal care use with limited attention to content or quality of care (Alexander &

Kotelchuck, 2001; Sword et al., 2012). Few studies (Handler, Raube, Kelley, & Giachello, 1996;

Lori, Yi, & Martyn, 2011; Mazul, Salm Ward, & Ngui, 2017; Wheatley, Kelley, Peacock, &

Delgado, 2008) focus on perspectives of prenatal care quality from African-American mothers

3

and other mothers of color. Studies that focus on mothers of color have not simultaneously

explored providers’ perspectives on prenatal care quality. Only one study (Dahlem, Villarruel, &

Ronis, 2014) that examined interpersonal communication found that quality patient-provider

interactions between African-American mothers and their providers were positively associated

with trust that mothers had toward providers and satisfaction with prenatal care. Given that the

delivery and receipt of prenatal care is a reciprocal process between providers and mothers, more

research is needed to assess differences in priorities for health care quality between these groups

for increasing quality patient-provider interactions.

As disparities in quality of care persist between African Americans and Whites (Agency for

Healthcare Research and Quality [AHRQ], 2015), and African-American mothers report more

adverse experiences with prenatal care than White mothers (Wheatley, Kelley, Peacock, &

Delgado, 2008), it is important to understand and address factors that underlie these differences.

One factor that might contribute to disparities could be differences in perceptions of person-

centered care, defined as care that “ensures that each person and family is engaged as partners in

their care quality” (AHRQ, 2015). Given ongoing advocacy for further examination of patient-

provider-system interactions in prenatal care (Alexander & Kotelchuck, 2001; Mazul, Salm

Ward, & Ngui, 2017) and current attention to decrease disparities in person-centered care,

elements that African-American and other mothers of color identified as aspects of prenatal care

quality should be further explored rather than a simple focus on quantity.

In this qualitative study, we compared perceptions of prenatal care quality between African-

American and Mixed-Race mothers and maternal care providers. Using Donabedian’s (1988)

model of health care quality to inform findings, we examined perceptions regarding aspects of

quality related to prenatal care structure and processes with focused attention to patient-provider

4

interactions and perspectives on person-centered care. As a second research aim, we compared

perceptions of prenatal care quality between privately-insured and Medicaid-insured mothers to

identify differences in perceptions between mothers of differing socioeconomic circumstances

(SES) using insurance type as an indicator.

Methods

Study setting and recruitment

This study took place in Southern Wisconsin, a state that ranks high in racial disparities in

adverse birth outcomes between African-American, Mixed-Race, and White mothers (March of

Dimes, 2016; Onheiber & Pearson, 2012, Wisconsin Department of Health and Human Services,

2016). From March 2015 through December 2016, fourteen clinics served as recruitment sites,

including private and academic medical centers and federally qualified health centers offering a

variety of prenatal care services with individual, group, and midwifery care.

Through purposive sampling, we recruited a diverse range of prenatal providers by provider type

and mothers who varied by education, insurance status, and number of children. Based on

previous qualitative research recommendations (Creswell, 2013), we initially sought to recruit

thirty mothers and providers to obtain saturation. Thirty-nine mothers and providers were

recruited through flyers at clinics and community events, emails through clinic and community

list serves, and snowball recruitment in which participants who completed the study recruited

other mothers and providers. We selectively recruited African-American mothers because the

largest racial disparities in birth outcomes exist between African-American and White mothers.

We also included mothers who self-identified as Black or African American and one or more

other races (i.e. Native American or White) given the social complexities that could occur with

5

Mixed-Race identities (Harris & Sim, 2002; Rockquemore, Brunsma, & Delgado, 2009; Storrs,

1999). Eligible mothers met the following criteria: childbirth within 6 months of study

recruitment, age 18 years old and over at the time of their infants’ birth, had one or more prenatal

care visits during pregnancy, residency within the county throughout the pregnancy, and delivery

at a hospital within the county. Eligible prenatal providers included active obstetrics and

gynecology (OB/GYN) physicians and residents, family medicine physicians and residents,

nurse-midwives, and nurse practitioners. The University of Wisconsin Madison institutional

review board deemed this study exempt from IRB review under section 45 CFR 46.101(b)(2).

Data collection

The first author conducted all interviews in-person using semi-structured interview guides.

Demographic information was collected from participants through self-report before their

interviews (Table 1). Given the importance that insurance has for women to obtain prenatal care,

we used the insurance variable to categorize women into privately-insured and Medicaid-insured

groups to assess differences in perceptions between mothers.

As in previous research (Salm Ward, Mazul, Ngui, Bridgewater, & Harley, 2013; Sword et al.,

2012), the interview guides included open-ended questions such as “How would you describe

quality prenatal care?”, allowing the interviewer to incorporate an inductive approach and

mothers and providers to express views in their own words. For maximizing relevance of study

findings to clinical and community program needs, open-ended questions stemmed from

previous research (Salm Ward et al., 2013; Sword et al., 2012; Wheatley et al., 2008) and

discussions with physicians and program managers of two African-American community-based

prenatal support organizations in Wisconsin. Topics explored through the questions include

6

initiation of prenatal care, barriers and facilitators to getting visits, communication between

mothers and providers, nurses, and ancillary staff, and education on prenatal topics as

recommended by the American College of Obstetrics and Gynecologists (ACOG). Analyses for

interview transcripts occurred in tandem with new interviews, and new questions were developed

to inquire about new concepts that emerged. Data saturation was reached when the last 2

interviews for providers and mothers did not generate new concepts for investigation.

Each interview was conducted in spaces convenient to the participants in clinics, mothers’

homes, or library rooms. All participants gave verbal informed consent before each interview

and received $25 gift cards in appreciation for their time. To protect study participants’

identities, interview guides did not have questions about personal information (ex. Name,

birthdate), and participants were given subject ID numbers for identifiers during data analyses.

Each interview lasted approximately 30-45 minutes, was audio-recorded, and transcribed

verbatim.

Analyses

The five-member analysis team used thematic analysis techniques (Boyatzis, 1998) for

identifying key themes and patterns in the interview transcripts. This type of qualitative analysis

gives the flexibility to incorporate inductive analysis based on participants’ voices and deductive

analysis along with codes stemming from previous studies. A preliminary codebook was

developed using a priori codes from previous research (Sword et al., 2012). Additional codes

were then established using an inductive approach in which the first maternal and provider

interview transcripts was read in full for content, then open-coding techniques were used to

assign conceptual codes to meaningful segments of text. This coding scheme was applied for the

7

remaining interviews with additional codes established as new concepts emerged from the

interviews.

To establish coding reliability, the analysis team took the following steps (Boyatzis, 1998). Two

members coded each transcript as one of the most common ways of establishing reliability. Each

analysis team member first independently read transcripts and coded interviews using the

codebook. Inter-rater reliability was checked through calculating percentage agreement of

themes between coders before the coding teams met for consensus. The consensus meetings then

occurred to discuss coding discrepancies and discuss changes to the codebook based on

additional themes that emerged.

Next, we identified and compared recurring themes between and within groups of mothers and

providers using memos, data matrices, and consensus meetings. Differences in mothers’

experiences were explored by their categorization as “privately-insured” or “Medicaid-insured”.

Differences in providers’ experiences were assessed by provider type. NVIVO was used as a

data retrieval tool for coding. An audit trail was maintained of coding decisions and theme

identification and comparison throughout the analysis process.

To enhance relevance of our findings to current prenatal care quality research (Sword et al.,

2012), emergent themes were mapped to broader categories that reflect Donabedian’s (1988)

conceptual model of health care quality. Although conceptual frameworks are not widely used in

qualitative research, they can be used for applied research like this study that focuses on policy-

driven outcomes (Pope, Ziebland, & Mays, 2000). The Donebedian model proposes that three

main constructs constitute health care quality: 1) structure, which refers to the environmental

context where care is provided (i.e. clinic resources, medical organization of care), 2) process,

8

which encompasses technical and interpersonal aspects on how providers care for patients, how

patients receive care, and patient-provider interactions, and 3) outcomes, which refers to patient

health status measures related to health care and satisfaction of care received. Illustrative

quotations were extracted from the transcripts for each construct.

Results

Table 1 provides the demographics of providers (n=20) and African-American and Mixed-Race

mothers (n=19) who participated in the study. Table 2 maps the following themes identified from

the interviews with Donebedian’s health care constructs of structure, process, and outcomes.

Most themes related to the process construct, specifically patient-provider interactions.

Construct 1: Structure

Mothers and providers agreed that “quality prenatal care” includes care being accessible

throughout the pregnancy period regarding appointment availability and clinic resources. One

family medicine doctor noted:

I think it needs to be accessible both in terms of having [it] in a physical facility that's going

to be convenient for the patient… in terms of economics, having insurance that's going to

cover everything, and then with available appointments, being able to get in.

Some mothers and providers also valued care that unifies the prenatal care process with

childbirth and postpartum care. One Mixed-Race mother commented on the segmented

organization of maternal care:

9

I feel like [maternal care is] a very fragmented process… it would be so nice if it was like,

I'm going to help you through this process of becoming a parent … it feels very fragmented

and un-unifying when I think what you want is care that unifies you and your baby.

Differences in other structural elements of health care quality emerged between providers and

mothers. Although mothers did not mention benefits to team approaches to prenatal care

delivery, providers viewed access to good clinic teams as important aspects of prenatal care

quality, as these family medicine and OB/GYN doctors note:

I think having a team approach with some nurses who are dedicated to coordinating things,

the physician assistant and the team approach, in some ways, it spreads out the workload, but

it also doesn’t put the burden on one person. And so then I think things don’t get dropped.

I also think having a good clinical staff is important because the physician tends to be very

busy with not only prenatal care but also GYN care…

Structural barriers to prenatal care for mothers included scheduling issues with clinic staff, with

this problem recalled more than transportation issues hindering prenatal care access. More

Medicaid-insured mothers experienced structural issues than privately-insured mothers, as

exemplified by this African-American mother’s experience:

[OB/GYN doctor] always told me that if you miss an appointment, call right away and get in

that week. So one time I did miss an appointment, and I called to reschedule it, and [clinic

staff] told me that it was only an annual check visit, we don't have anything this week, why

don't you just come in your next appointment…

10

Construct 2: Process

When describing “quality prenatal care” relative to visit activities, themes emerged relative to

patient-centeredness, communication of testing and options, and cultural competence or

sensitivity.

Patient-Centeredness

Providers and mothers overwhelmingly valued care characteristics that indicate a patient-

centered approach which include: compassionate care that is tailored to the mothers’ needs,

functional relationship built between mothers and providers, effective providers’ responses to

patient questions, prenatal education for mothers to be well informed, and care that encompasses

the “whole woman.” One midwife explained:

We try to treat the entire woman and her family, so we're very much family-centered care, as

well. So we look at all of, many socioeconomic factors when we're looking, when we're

doing, providing the prenatal care.

As an example of compassionate care, one Mixed-Race mother expressed appreciation for her

OB/GYN doctor who tailored her care with empathy concerning her past experiences with

miscarriages:

I think there was a level of understanding there where [OB/GYN doctor] put herself in my

shoes and could maybe empathize with how I was feeling about the pregnancy based on our

previous history and like based on how things started there.

11

Cultural Competence (Sensitivity)

Although both groups agreed on an overall picture of patient-centered prenatal care, perspectives

differed on how this care translates into practice, particularly regarding “cultural competence” or

“cultural sensitivity.” Some providers had skeptical views about cultural competence:

I don't have any “cultural competence”… whether we're talking about a different culture like

a different ethnic background or we're talking about a different culture like different

socioeconomics, if you are my patient, I don't know what your background is or what your

challenges are until we talk about it.

Although mothers value providers who treat patients on a case-by-case basis, mothers want

providers to learn of needs specifically affecting mothers of color, as this African-American

mother explains:

Culturally sensitive is being aware of if you have a sickle-cell patient, for example, really

doing your homework on the emotional side of what it means to have sickle cell, the

prevalence of it in the African-American community.

Mothers also felt that lack of providers’ cultural competence could lead to implicit bias and

erroneous assumptions that providers make about mothers. One Mixed-Race mother described

her experience with her perinatal care team:

It’s not even on their wavelength of how, based on implicit bias, or whatever, they may treat

someone differently…It’s not a part of their everyday conversation when it should be, or

their thought process. For them, they know what statistics tell them. You know what I mean?

It’s, we’re numbers and not people.

12

The need for culturally competent or culturally sensitive care appeared to have greater value to

mothers, specifically care where providers do not make assumptions or have judgments about

their social or economic circumstances. In comparing Medicaid and privately-insured mothers,

providers’ negative assumptions were noted almost entirely among the privately-insured African-

American and Mixed-Race mothers rather than Medicaid-insured mothers:

A lot of times there was an assumption. Like [providers] just assumed that I was on

BadgerCare [Medicaid]. I'm like, uh no, I'm not actually. You know, I have my own plan…

So I think quality is, don't treat me like the way you treated the other women on

BadgerCare…

Testing and Options

Overall, mothers’ perceptions of prenatal care quality centered on interpersonal processes of

prenatal visits. In contrast, providers concentrated more on activities that constitute “quality

prenatal care” based on American College of Obstetrics and Gynecology (ACOG) standards,

such as completion of required tests and communicating information to the patient. One

OB/GYN doctor commented:

Quality prenatal care from our perspective, from the physician's perspective, is making sure

that each patient has had all the lab testing that they need as part of the pregnancy… So to

provide quality care, every patient has to have that information because if there is something

amiss, we need to figure it out.

Although most mothers acknowledged the need for testing, mothers also expressed the need for

providers to communicate options in care and the ability to provide consent without coercion.

Pressure to consent to optional tests and procedures caused great concern for mothers. This

13

mother experienced pressure to complete an unwanted test, which prompted her to switch

providers:

She just kind of kept pushing [genetic testing]. And I asked her, why do you do that with

women where you try to, you know, get them to do tests, and they opt out of it? And her

response was, you know, so that way if you wanted a choice to terminate that pregnancy,

then you can have that choice… That's why I don't, that's why I stopped seeing her.

Construct 3: Outcomes

Both groups agreed that “quality prenatal care” should result in satisfaction of mothers in the

care experienced. Some providers also noted the importance of providers being satisfied with the

care given, as one OB/GYN doctor notes:

I feel like it's so much better when the patients are happy with the care that they're getting,

but we're also happy with the care that we are providing them.

However, some mothers felt dissatisfied with the overall process of care they received when

continuity of care unexpectedly dissolved for labor and delivery and/or postpartum, as one

mother expressed:

I kind of felt a little bit disconnected towards the end of the pregnancy with [provider]. I

know she was busy too, but she wasn't even at my birth, so I kind of felt like all that time that

we spent… I didn't really have any closure, you know, with the support that I had.

Another aspect of prenatal care quality for mothers affecting the overall satisfaction of care is the

inclusion of postpartum educational topics such as breastfeeding and contraception. Upon further

14

reflection on mothers’ prenatal and postpartum visits, several expressed dissatisfaction when

their inquiries on postpartum topics were not adequately addressed:

[Provider] did talk about birth control like towards the end, and, (pause) you know, just gave

me some options. But it was kind of, I don't know, that part was kind of like, how you say it,

it wasn't as in depth of a conversation… I didn't feel as sure when I left that appointment as to

what I wanted to do.

Discussion

These findings support the notion that African-American and Mixed-Race mothers and prenatal

care providers have some shared understanding of what constitutes prenatal care quality.

However, important differences include contrasting viewpoints on the importance of cultural

sensitivity and communication of standards of prenatal care while respecting mothers’ value on

having options. The AHRQ US National Healthcare Disparities Report annually documents

racial and ethnic disparities in health care along four concepts: person-centered care, safety,

effectiveness, and timeliness, and our study contributes to the literature by highlighting potential

disparities in patient centeredness.

We also found that privately-insured and publicly-insured mothers of color differed in structural

and process elements of care in which they emphasize negative experiences. As previous

research indicated (Wheatley et al., 2008), Medicaid-insured mothers in this study reported

structural issues with prenatal care access as exemplified by complications of scheduling

appointments with clinic staff. In contrast to previous findings (Attanasio & Kozhimannil, 2015),

privately-insured mothers in our study perceived more problems with negative assumptions and

disrespect during prenatal interactions. These problems for privately-insured mothers relate to

15

the process aspects of prenatal care quality rather than structural elements. The possibility exists

that higher SES mothers have different expectations of care and may view certain provider

interactions differently than lower SES mothers (Attanasio & Kozhimannil, 2015). Future

research can investigate to what extent perspectives within African-American mothers differ

based on SES characteristics; these differences may influence their perspectives of care and may

need direct intervention to enhance perceived quality.

Findings from this study indicate unique differences in perceptions of quality between mothers

and providers, particularly perspectives on cultural sensitivity which might be a relevant aspect

of patient centeredness and overall quality for African-American and Mixed-Race mothers.

Thus, concepts related to cultural sensitivity could be further explored for assessing prenatal care

quality among mothers of color and providers. Racial discordance between mothers and

providers might have also influenced perceptions of quality. Eighteen out of twenty providers in

our study were White. This percentage of White providers is representative of the lack of

diversity in prenatal care providers in the US. Patient-provider communication, trust, and

satisfaction is lower in race-discordant patient-provider relationships (Cooper et al., 2003;

Johnson, Roter, Powe, & Cooper, 2004), and racial discordance may have influenced mothers’

perceptions of their care in this study. The emerging relationships between patient-provider

racial concordance, health care satisfaction, and adherence to recommended care warrant further

attention in research (Dovidio et al, 2008; Earnshaw et al, 2016), and understanding these

relationships is especially relevant in communities where racial discordance between patients

and providers is common.

Our study had some limitations. Because recruitment was targeted to one Midwestern county,

mothers and providers in this study might not represent those in other healthcare settings.

16

Notably, all mothers had either Medicaid or private insurance. Uninsured patients generally

report worse experiences in care (Fiscella & Sanders, 2016), including more barriers in

communication problems (Attanasio & Kozhimannil, 2015). In addition, we recognize that using

insurance status as an indicator for SES may not fully account for differences based on other

socioeconomic factors. Because our provider sample included few midwives or nurse

practitioners and most mothers received care from OB/GYN doctors, our findings primarily

address OB/GYN care. Future studies could dually explore patient and provider perspectives

within family medicine and midwifery care. Finally, data collection was limited to one postnatal

interview per mother, and recall bias could have influenced their recollection of prenatal events.

Future studies can incorporate multiple interviews during prenatal and postpartum periods to

capture thoughts about care during pregnancy and compare to overall experiences.

Implications for Practice and/or Policy

For addressing healthcare disparities, improving mothers’ satisfaction with prenatal care, and

encouraging early initiation and continuity of care for mothers, providers should continue to

focus on ways to enhance patient-provider communication in delivering tailored and culturally

sensitive care. Our findings suggest that many barriers related to prenatal care could be

addressed by strategies to enhance patient-provider communication between providers and

mothers of color. Specifically, these results indicate that prenatal care should encompass more

strategies to enhance provider understanding of patients’ social and cultural context.

Several strategies for assessing patient context and incorporating cultural sensitivity might

facilitate communication between providers and mothers of color, given time limitations for

visits. ACOG (2014) recommendations include patient-centered interviewing, cultural sensitivity

17

training for providers, and strategies to improve shared decision making between mothers and

providers. Improvements to enhance assessments of patients’ social and contextual

circumstances at the initial prenatal visit could facilitate patient-provider communication

throughout pregnancy. Initiatives to increase racial diversity among prenatal providers would

enhance cultural sensitivity toward mothers of color. Also, doula support (Kozhimannil,

Vogelsang, Hardeman, & Prasad, 2016) and alternative prenatal care models such as

CenteringPregnancy© (Ickovics et al., 2011; Lathrop, 2013) can be further explored for

enhancing culturally sensitive prenatal education and support and increasing adequacy of visits

for mothers of color.

Conclusion

Given the continued racial disparities in adverse birth outcomes, developing a shared

understanding of “quality prenatal care” remains important for mothers of color and providers to

collaborate for optimal maternal health and birth outcomes and continuing care postpartum.

Further exploration of attitudes that affect patient-provider interactions is therefore warranted to

improve provider understanding of interpersonal communication, provider training, and patient

education (Thornton, Powe, Roter, & Cooper, 2011). Understanding gaps between patient and

provider perceptions and experiences with prenatal care is critical for the continual improvement

of clinical services and culturally sensitive approaches to prenatal care delivery for mothers of

color.

18

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Table 1. Demographic Characteristics of Providers and Mothers

Providers

(N=20)

Mothers

(N=19)

Provider Type a

OB/GYN Doctor 8 17

Family Medicine Doctor 8 2

Midwives 2 1

Nurse Practitioner 2 3

Race

Black / African American 1 15

Mixed-Race b 1 4

White 18 0

Gender

Female 14 19

Male 6 n/a

Years of Experience

4 Years or More 15 n/a

Less than 4 Years 5 n/a

Age

18-24 n/a 2

25-34 n/a 13

35 or More n/a 4

Parity

1 or more Older Children n/a 10

None / First-Time Mother n/a 9

Education

High School Graduate n/a 4

Some College n/a 4

Bachelor Degree or More n/a 11

Insurance Status

Private Insurance n/a 10

Medicaid (BadgerCare) n/a 9

a Note for total exceeding 100% for provider type for mothers: Some mothers had more than 1

type of provider during recent pregnancy which is reflected in the numbers and percentages.

b Mixed Race refers to participants that self-identify as two or more races / ethnicities. Only one

provider self-identified as White and an Asian ethnicity. Mixed-Race mothers self-identified as

Black or African American and White and/or Native-American.

Table 2. Donebedian (1988) Concepts and Themes from Interviews

Concepts Providers Mothers

Structure: Clinic resources and

medical organization of care

Accessibility of appointments

and clinic resources

Availability of appointments

Team approach with providers

and staff

Connection of care prenatally

through postpartum

Process: Provider and patient

activities during visits

Patient-centered care tailored

to the individual

Compassionate care

Cultural competency /

sensitivity

Testing by medical standards Choosing options without

pressure

Outcomes: Patient satisfaction

of care and health outcomes

Mothers’ satisfaction of care Satisfaction with continuity

Satisfaction of communication

with postpartum topics