Pregnant women of color say doctors and nurses mislead them

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Many pregnant women of color perceive their interactions with doctors, nurses, and midwives as being misleading, according to new research.

The study finds women of color believe information is being “packaged” in such a way as to disempower them by limiting maternity health care choices for themselves and their children.

“Given the significant birth-related disparities faced by women of color, particularly black women, this study illuminates a previously undescribed aspect of the patient-provider interaction,” says lead author Molly Altman, an assistant professor at the School of Nursing at the University of Washington.

“How providers shared or didn’t share appropriate information about options, risks, and possible outcomes was perceived as biased and dependent on whether providers saw them as individuals capable of making good decisions,” says Altman.

Bias and disrespect for women of color

The study participants said that while they wanted complete, truthful, and comprehensive information about available care and options, they felt information was “packaged” in a way that reflected what the provider thought the patient should do, based on bias, and was “disrespectful.”

One participant says she felt like her providers were “harassing” and “bullying” her to get tests she didn’t want. Another says she wanted to “do a little bit more research” into vaccinations before getting them for her children, and says her provider “was like, ‘Well, I thought that you cared about your children. But if that’s not the case, then feel free to go.'”

One participant said that during a postpartum hemorrhage, she received no information about what was happening to her and was treated as if she were not part of the situation.

Researchers interviewed 22 self-identified women of color from the San Francisco Bay Area who had given birth within the previous year. The interviews were open-ended discussions of the participants’ experiences in pregnancy, birth, and postpartum care and took place between September 2015 and December 2017.

The researchers point out in their paper that they used a method of analysis that “acknowledges the subjective and involved nature of the researcher in relation to the participant” to account for the interpersonal nature of the research.

“The results of our study were not surprising in the sense that communities of color have long known that providers often use their power to influence health-related communication and decision-making,” Altman says. However, she adds, “given existing evidence of the impacts of implicit bias and racism on birth outcomes, this study provides a potential mechanism for how this association occurs.”

‘I didn’t know what was happening’

The authors explain that while providers have to consider health literacy of patients and tailor information to make it understandable, there is a difference between providing information in understandable language and packaging information based on prejudice and assumptions, or not providing information at all.

One participant said that during a postpartum hemorrhage, she received no information about what was happening to her and was treated as if she were not part of the situation.

“It was scary because I didn’t know what was happening, and, I mean, it was obvious that it was a serious issue because of, like, the look on everyone’s face and, like, how—how no one was even talking to me,” the participant said.

Another participant explained that when she told her health care providers she was a student at the University of California, Berkeley, they treated her differently.

“They’re like, ‘Oh, maybe she’s not a crazy black woman,’ or something, you know? […] It just makes me feel weird because, one, I feel like I’m accessing on like a certain type of privilege. And I feel like a part of me does it on purpose because I know that they’re going to treat me better after I say that,” the participant said.

The researchers hope the study provides evidence that will lead to improved provider training in power differentials, informed consent and providing respectful care.

“Our study is one of the first to evaluate how information and power are exchanged between providers and patients from the perspective of the people we serve,” says coauthor Monica McLemore, an associate professor in the School of Nursing at the University of California, San Francisco, which is also where Altman conducted the research while a postdoctoral fellow as part of its California Preterm Birth Initiative.

“I believe these data are critical in developing new models of partnership, specific to how black women and other people with the capacity for pregnancy want and need to receive information that is essential for their care and decision-making,” McLemore says.

The research appears in the journal Social Science & Medicine.

Additional coauthors are from University of California, San Francisco; the University of Washington; and New York University. The University of California, San Francisco; Marc and Lynne Benioff; and the Bill & Melinda Gates Foundation funded the research.

Source: Jake Ellison for University of Washington