“You Learn to Go Last”: Perceptions of Prenatal Care Experiences among African-American Women with Limited Incomes
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- Salm Ward, T.C., Mazul, M., Ngui, E.M. et al. Matern Child Health J (2013) 17: 1753. doi:10.1007/s10995-012-1194-5
African American infants die at higher rates and are at greater risk of adverse birth outcomes than White infants in Milwaukee. Though self-reported experiences of racism have been linked to adverse health outcomes, limited research exists on the impact of racism on women’s prenatal care experiences. The purpose of this study was to examine the experiences of racial discrimination during prenatal care from the perspectives of African American women in a low income Milwaukee neighborhood. Transcripts from six focus groups with twenty-nine women and two individual interviews were analyzed to identify important emergent themes. Validity was maintained using an audit trail, peer debriefing, and two individual member validation sessions. Participants identified three areas of perceived discrimination based on: (1) insurance or income status, (2) race, and (3) lifetime experiences of racial discrimination. Women described being treated differently by support staff and providers based on type of insurance (public versus private), including perceiving a lower quality of care at clinics that accepted public insurance. While some described personally-mediated racism, the majority of women described experiences that fit within a definition of institutionalized racism—in which the system was designed in a way that worked against their attempts to get quality prenatal care. Women also described lifetime experiences of racial discrimination. Our findings suggest that African American women with limited incomes perceive many provider practices and personal interactions during prenatal care as discriminatory. Future studies could explore the relationship between perceptions of discrimination and utilization of prenatal care.
KeywordsRacial discrimination Prenatal care Racial disparities Racism
Racial disparities in infant mortality have been an important focus in the United States . In Milwaukee, Wisconsin, the African American infant mortality rate between 2008 and 2010 was nearly three times higher than Whites and more than twice the Healthy People 2020 goal of six deaths per 1,000 live births [1, 2, 3]. The reasons for these disparities are complex and multidimensional. However, access to early, high quality and continuous prenatal care can play a role in identifying and addressing factors that affect disparities in infant mortality [1, 4]. The American College of Obstetricians and Gynecologists recommends women begin prenatal care in the first trimester and have at least ten visits . Despite these recommendations, reviews of infant deaths in Milwaukee have revealed that many women either receive late (third trimester) or no prenatal care [2, 3].
Race is a complex issue and what it represents is hard to define. The U.S. is the only major industrialized country that reports health status based on race instead of social class , and often uses race as a proxy for socioeconomic status (SES), culture, and genes . Despite perceptions that racism is no longer an issue, there is considerable evidence that cultural support for racism against African Americans persists, including a desire to maintain physical distance from African Americans, resulting in racially-segregated cities . Milwaukee, which has a history of racism and discrimination, ranks highest among all large cities in the country for racial segregation [8, 9, 10].
The Institute of Medicine’s 2003 report, Unequal Treatment, found that not only do racial disparities in health outcomes exist, but racial disparities in the quality of health care received also exist, specifically citing racism as a factor in these disparities . Racism has been defined as a social construct that refers to institutional and individual practices that create and reinforce oppressive systems . The U.S. has a long history of racism, with far-reaching effects on every aspect of life in this country [13, 14, 15]. While it is difficult to assess discrimination in health care , there is a history of distrust by African Americans of health care providers and systems in the U.S. [13, 14].
An individual’s compliance and satisfaction with health care can be affected by perceptions of racism and discrimination in the health care setting [15, 16, 17]. Several studies have examined the relationship between life time experiences of racism and health outcomes [7, 15, 16, 18] and birth outcomes [19, 20, 21, 22]. Demarco and colleagues  examined perceptions of discrimination during pregnancy and prenatal care using the Oregon Pregnancy Risk Assessment Monitoring System (PRAMS), and found that 20 % of women perceived discrimination while receiving medical care during pregnancy, with most attributing the discrimination to type of insurance versus race. The purpose of this study was to examine the experiences of racial discrimination during prenatal care from the perspectives of African American women in a low income Milwaukee neighborhood.
According to Jones, there are three levels of racism: personally-mediated, institutionalized, and internalized . Personally-mediated racism refers to “differential assumptions about the abilities, motives, and intents of others by race” and “differential actions towards others by race,” . Institutionalized racism refers to “differential access to the goods, services, and opportunities of society by race,” and internalized racism refers to “acceptance by members of the stigmatized race of negative messages about their own abilities and intrinsic worth,” . We utilized Jones’ theoretical framework for racism as a means to understand how racial discrimination might be perceived among the women in our study .
We used a community-engaged approach with the YWCA of Greater Milwaukee1 (www.ywcasew.org), a community-based organization focused on eliminating racism and empowering women. A qualitative approach with focus groups was chosen for this project because: (1) there existed a dearth of information about perceived racism during prenatal care, (2) qualitative methods allow for in-depth, nuanced examination of behavior without predefining all critical factors and relationships, (3) focus groups allow participants to present their own views but also to interact with each other to further clarify theirs and others’ experiences, and (4) this approach gives voice to participants who have been historically under-represented or marginalized in health research .
Sampling was focused on women at highest risk for poor birth outcomes . Study criteria included women who self-identified as African American, eighteen years or older, with a child 1 year of age or younger, and who experienced at least one prenatal care visit in Milwaukee. The project was reviewed by the University of Wisconsin-Milwaukee Institutional Review Board.
Two methods of recruitment were used. First, the YWCA mailed a letter to participants of a program for mothers with young infants returning to the workforce inviting them to call to learn more. Using a screening script, the YWCA coordinator scheduled interested participants into pre-planned time slots. Second, we set up a recruitment table at the YWCA with flyers that asked “are you African American, eighteen years or over, with an infant less than a year old?” and inviting them to participate in a discussion group. Interested participants signed up for a group session scheduled for later in the day. No reminder calls were made due to the close interval of time between scheduling the groups and the time of groups. In two instances, only one participant arrived for the focus group; in those cases, an individual interview was conducted. Prior to each focus group, the trained facilitator conducted a verbal informed consent—describing the investigative nature of the groups, that they would be recorded, how the data would be used, and inviting anyone not interested to feel free to leave.
The facilitator utilized a discussion guide designed to elicit lengthy descriptions while remaining open to the discovery of new concepts and ideas. Primary questions included, “What did you like about the prenatal care you received for this baby?” “What didn’t you like?” “How would you know you were getting good prenatal care?,” “What was hard for you about getting good prenatal care?” Probes were used to elicit more detailed descriptions of women’s experiences, as well as thoughts about the effect of race on their experiences, using the question, “Do you think race had anything to do with this?” While we felt it was important to introduce racism if it did not emerge organically from the discussion, because of the exploratory nature of our study, we allowed the discussion about perceptions of racism to evolve (or not evolve) within each interview. Participants completed a brief (thirteen item) anonymous pregnancy history and demographic survey including questions such as race, marital status, employment status, pregnancy information, and family income in the past 12 months (categorized into: <$10,000; $11,000–$29,999; $30,000–$49,999; $50,000–$69,999; and >$70,000).
We conducted six focus groups and two individual interviews in the community room of the YWCA. Participants were provided snacks, childcare, and a gift card to their choice of either a local grocer or retail store to thank them for their contribution. Focus groups were led by a trained facilitator, an African American woman, in all but two cases when a white moderator substituted. A note-taker was present in the back of the room during the focus groups, and groups were audio-recorded and transcribed verbatim. Transcripts were checked for accuracy, field notes added, and then imported into NVIVO 8 (QSR International) for analysis.
The lead researcher performed all data analysis tasks with regular consultation and feedback from the co-Investigators. To ensure credible data collection and analysis, the lead analyst and co-Investigators listened to audio recordings for facilitation quality and provided ongoing guidance to the facilitator. Investigators met bi-weekly to review the audit trail and codebook, discuss potential themes, and address any challenges [26, 27, 28]. Preliminary results were discussed with all co-Investigators and presented to the YWCA for comment and feedback. Study participants were invited to attend member validation sessions; two were reachable by phone. Due to participant time constraints, they were conducted one-on-one between the lead analyst and each participant by presenting preliminary themes and asking for participant feedback and clarifications on the themes [26, 28].
Analysis was guided by a thematic approach . After the sixth focus group, the lead researcher randomly chose three transcripts and conducted microanalysis, a line-by-line analysis of each transcript to identify codes and create a codebook. After the codebook was developed, the lead researcher went back and coded all eight transcripts using the final codebook. During the codebook development process, the team examined focus groups five and six for new concepts; since none emerged, recruitment ended [29, 30]. Codes that were present in more than half of the transcripts were identified and themes within these codes were explored .
Demographic characteristics of the study sample (N = 31)
Black or African-American
Highest level of education
11th grade or less
Current employment statusb
Unemployed, looking for work
Unemployed, not looking for work
Living with a partner
Month prenatal care began this pregnancy
Number of prenatal visits
1–5 prenatal visits
6–10 prenatal visits
11 or more prenatal visits
Experiences of Discrimination
Across all focus groups, an overarching theme of discrimination, or feelings of being treated differently, arose. Discrimination was focused on three main themes: discrimination based on: (1) insurance and/or income status, (2) race during prenatal care, and (3) race over their lifetime.
Discrimination Based on Insurance and/or Income Status
In every discussion, the themes of differential treatment based on insurance status or income level arose, with perceptions in particular of being treated differently due to receiving public assistance. Across the focus groups, participants talked about the reactions they received when using medical assistance cards; feeling as though they were seen as “lower class” when they presented their medical assistance card versus the reception they would receive if they produced a private insurance card. In most of the groups, perceptions of lower-quality care based on insurance status were also described, with many commenting that clinics or hospitals that accepted private pay (but not medical assistance) provided higher quality care. Individual women described issues with access to appropriate care based on their public insurance—some expressed a lack of awareness that they had the right to choose a provider or clinic; others expressed frustration at calling multiple clinics trying to find out if their insurance was accepted, or in figuring out which hospital accepts insurance for what type of care.
Some discussion threads seemed to blur the lines between insurance or income status and race, attributing negative treatment to insurance or income status, but mentioning race in their description of the experience. While referring to the differences in care between private and public insurance, they would note that “minorities are the most on assistance” and discuss their treatment in racial terms as well as insurance terms—for example, one woman began to describe the better clinic that her friend (who had private insurance) was able to attend, but that, because they were the only Black girls in the waiting room, “we waited longer than anybody else.” These types of comments were frequently endorsed by other group members with head nodding or laughing.
Discrimination Based on Race
In this example, while the woman initially attributed the question to just a “bad experience” at the clinic, as the group discussion progressed, she later stated, “Why would she ask me if I smoke crack? But because I’m Black, she said crack, that’s probably what it is.” Others nodded in agreement at this statement.
I told [my midwife] I didn’t like going to my appointments, and one day she just asked me, ‘do you do crack?’… Just because I don’t want to come to my appointments, I gotta be a drug addict?
Racial Discrimination Over the Lifetime
Though not explicitly asked about, the theme of racial discrimination throughout women’s lifetimes arose in focus groups. Participants provided examples of being treated differently based on race throughout their lives, such as instances of clerks following them around stores, customers refusing to be served by them, or strangers on the bus moving away from them, clutching their purses, or otherwise giving the impression that they were frightened of the women. While some participants described daily experiences of racial discrimination (for example when they went to the grocery store), a few participants disagreed, with at least one participant stating that she had not experienced any racial discrimination in her lifetime.
It’s not gonna change. It’s not, cause it’s been like this forever. You learn to go last. No matter how much people talk about it, it is the same…. yes it is, it’s been like that forever…That’s how it is.
Other group members expressed agreement with this statement.
There was a strong theme of perceptions of being treated differently by providers, clinic staff, and others (store clerks, strangers on the street, case workers, potential employers) during prenatal care and at other times. These themes were mostly centered on discrimination based on income level or insurance. This is not surprising since the lines between racial discrimination and discrimination based on income and insurance are blurred in the US [5, 17, 22]. However, themes of racial discrimination did arise from the discussions and generally fit within Jones’ theoretical framework of racism .
These data provided a handful of examples for both intentional and unintentional racism. Women described perceptions of unintentional racism, such as stereotypes about African Americans, for example, in the case of a woman being asked about crack use or another being asked about whether the father of the baby was involved. Whether the providers’ comments were intentionally racist or not, they were perceived as discriminatory by the women. These findings are supported by findings from the Wisconsin PRAMS survey which show that more African American women endorsed feeling emotionally upset as a result of how they were treated based on race . These findings are also in line with a study in which African American women obtaining family planning services reported experiences reflecting stereotypes by health care providers .
Internalized racism can erode individual self-value and undermine collective action, and thus, could explain a reluctance to discuss these issues. The groups discussed their perceived attributes of what it was like to be White, for example, that White people don’t use public assistance and that they have better hair and eyes. Jones describes this as the “acceptance by members of the stigmatized race of negative messages about their own abilities and intrinsic worth” .
Themes of institutional racism were more difficult for participants to recognize. According to Jones, institutional racism refers to the “differential access to the goods, services, and opportunities of society by race” . Groups provided examples of institutional racism, however, it was difficult to identify them as such. For example, they were able to articulate that they were treated differently because they were on public assistance, but would later note that “White people don’t have blue cards” (the color of Wisconsin medical assistance ID cards). Though they recognized that most people that were discriminated against for insurance were, in fact, African American, they seemed unable to link this discrimination to racism.
Reluctance to Discuss Racism
Another interesting finding was the initial reluctance in some groups of participants to discuss race without a probing question and validation from the rest of the group. This finding may suggest some level of discomfort discussing this topic among the participants. However, by the end of the group, the participants were more comfortable discussing race with each other. There were examples of the taboo of discussing racism, for example, when one woman insinuated that maltreatment was because she was Black and another participant said “…don’t say it like that”. As participants validated these feelings, more participants openly discussed how racism affected their lives. There were even instances in which individuals came to the realization that they had been treated poorly based on their race as others in the group verified it. For example, the woman who was asked about crack use did not recognize this as a racial issue until another group member told her, “It was probably because you’re Black”.
While some studies have explored perceptions of discrimination in prenatal care, few specifically examined racism. This study adds to the literature of perceived discrimination in prenatal care related to both race and socioeconomic status. The knowledge from this paper could help providers gain perspective regarding experiences of African-American women seeking prenatal care, and thus, could help inform improved systems of patient-centered care.
Our study had some limitations. First, because of the exploratory nature of this study, focus groups were not stratified by type of provider, location of prenatal care, or type of prenatal care, which could help determine how the method of care might mitigate experiences of discrimination. The use of focus groups in this study did facilitate a more comprehensive discussion of racism and discrimination that allowed the researchers to tease out discrimination based on insurance, income and attributed to racism. The groups allowed women to validate each other by laughing and commenting on experiences of others. They gave each other permission to “name” the phenomena and think and reflect on their experiences.
A second limitation to this study was that provider race was not collected; thus it is not clear if racial concordance between patient and provider changes perceptions of discrimination. Third, it is not clear whether the focus groups moderated by a white moderator were limited or if they provided an opportunity for a more in-depth exploration of concepts and experiences. Despite these potential limitations, this study provides insight into the experiences of prenatal care for a group of women in Milwaukee at high risk for inadequate prenatal care and poor birth outcomes.
Overall, our study findings suggest that, in this sample, women perceived discrimination based on insurance/income and race when using prenatal care services. Our findings highlight the need for a better understanding among providers and systems of care regarding how practices and personal interactions are perceived by the women being served, especially African American women with limited incomes, and further, how these perceptions may ultimately influence a patient’s use of prenatal care and subsequently, birth outcomes. Recognizing and addressing African American women’s perceptions and experiences in Milwaukee could be an important step in reducing the racial disparities in birth outcomes.
YWCA of Greater Milwaukee is now known as YWCA Southeast Wisconsin
We gratefully acknowledge the following contributors to this project—the generous women who were willing to share their stories with us; Samantha J. Perry, MPH, CHES, who conducted many of the focus groups; the support and collaboration of the YWCA, including Martha Barry, PhD, Racial Justice Director, Allison Scheff, Job Developer, and Lisa Boyd, Chief Operating Officer; funding through the Children’s Community Health Plan to reimburse participants for their time; and resources from the Center for Urban Population Health and the YWCA. We also thank Mary K. Madsen, Department of Health Informatics and Administration, College of Health Sciences, University of Wisconsin-Milwaukee, for providing comments and feedback on this manuscript.