Research Reports: 2-Part Series on Deaf and Hard-of-Hearing Mothers

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By Mel Ptacek

These research reports describe Lurie Institute research in collaboration with researchers at the University of Michigan Medical School on the pregnancy and postpartum experiences of Deaf and hard-of-hearing mothers.

Part One, Pregnancy Outcomes and Disparities for Deaf and Hard-of-Hearing Mothers

Deaf and hard-of-hearing women are more likely to visit the emergency room and stay in the hospital during pregnancy or around the time of childbirth for reasons unrelated to delivery, our researchers at the Lurie Institute for Disability Policy found in a national study.

“We need to think about how we can design a healthcare system that is patient-centered and truly accessible,” says Dr. Michael McKee, a medical doctor and researcher at the University of Michigan Medical School who is himself deaf. Co-principal investigators, McKee and Dr. Monika Mitra of the Lurie Institute for Disability Policy are leading the first systematic investigation of pregnancy experiences and outcomes of deaf and hard-of-hearing, or DHH, women in the United States. Mitra is the director of the Lurie Institute for Disability Policy at Brandeis University and an associate professor at Brandeis’s Heller School for Social Policy and Management.

The research is part of a five-year National Institutes of Health–funded study of deaf and hard-of-hearing women’s outcomes and experiences across the perinatal period: pregnancy, childbirth, and beyond.

Note: What’s the difference between “Deaf” and “deaf”?

Deaf and hard-of-hearing people sometimes use the terms “deaf” and “Deaf” to describe themselves. “Deaf” with a capital “D” suggests an identification with Deaf culture, language, and identity, whereas “deaf” with a lowercase “d” is more neutral. For example, a Deaf person may have attended a school for DHH students. Many people use one or the other exclusively, but a person might use “deaf” in one context and “Deaf” in another.

Before our team started this study, very little research into this topic had been conducted. A preliminary study for the current project led by Mitra and McKee had found disparate outcomes for DHH women. That result contrasted with the only other similar study at that time, a retrospective cohort study using data from Washington State. All other studies of this population—and there were very few—were not systematic. Mitra calls the lack of research on these women’s perinatal experiences “shocking.” The current study, now in its fifth year, has already produced notable findings.

According to the study’s findings, deaf and hard-of-hearing women were more likely to have severe chronic medical conditions than hearing women, including preexisting and gestational diabetes, preeclampsia, eclampsia, and placental abruption.

Note: Preeclampsia and eclampsia are conditions related to high blood pressure, which can often be dangerous. Placental abruption occurs when the placenta separates from the uterus.

Deaf and hard-of-hearing women were also more likely to have complications during pregnancy and adverse birth outcomes compared with their hearing counterparts—including low or very low birth weight, less healthy newborns, and preterm birth.

McKee points to several factors that may contribute to these findings. These factors include communication breakdowns, lack of accommodations (e.g., communication supports such as interpreters), inadequate provider training, and additional health risk factors linked to hearing loss. The study underway will help researchers understand the factors involved and how they interact. Ongoing study analyses are looking at differences in hospital use among DHH women compared to other women. Additional research will be necessary to examine causal pathways more closely.

Adrianna Smart, a Deaf advisory board member with two preteen children, emphasizes that many deaf and hard-of-hearing women who are pregnant or are considering pregnancy do not have enough information on pregnancy and childbirth. Smart stresses how important it is for doctors and other healthcare providers to understand this concept and take steps to provide clear and comprehensive information about healthcare procedures and options available. They must take extra time with deaf and hard-of-hearing women and, because interpreters typically interpret only what is said, doctors and other healthcare professionals must not assume that interpreters will fill in any communication gaps.

Even when deaf and hard-of-hearing women do receive written information, they may not understand everything they read because their families or teachers may not have taught them about perinatal health, healthcare, or their rights. This understanding is especially important when healthcare rights involving informed consent are involved. “This is a crucial component that must be discussed during the pregnancy stage before the baby arrives,” says Smart.

Unfortunately, many women don’t know that they have the right to make their own choices about childbirth. Smart wants deaf and hard-of-hearing women to know that they have the right to plan their preferred options, such as when a cesarean section might be performed, with their doctor or midwife. Smart herself discovered only seven months into a pregnancy that, though she had been encouraged to plan for her baby’s arrival by doing things like preparing the baby’s room, she had not been told to make plans for birthing, breastfeeding, or postpartum care. Without the proper information, she had also been overlooking her own needs for nutrition, exercise, and rest.

There is much that can be done now, McKee advises, some of which is or should already be part of medical practice for this population. He says that healthcare providers must identify deaf and hard-of-hearing women as a group needing extra support: “We should be flagging these individuals as higher-risk women, similar to what we do for other health conditions or older women.”

Healthcare providers can start by improving patient–provider communication. Effective communication with providers—or the lack thereof—affects how deaf and hard-of-hearing women use healthcare, adhere to treatments, and make decisions about the risks they may incur. Clear, accessible communication can increase their trust in—and satisfaction with— the healthcare they receive.

One of our goals for this study is to create recommendations for clinical practice. These will help providers better care for deaf and hard-of-hearing women. For example, recommendations can help practitioners notice cues that patients may not understand a treatment plan or other advice.

McKee also wants DHH women themselves to know that, although the burden of improving healthcare provision does not fall on them, there are still some things they can do now that may improve their pregnancy experience and outcomes. For example, DHH women who might want to become pregnant or who are pregnant can advocate for accessible communication, seek out information on reducing risks that affect pregnancy, and look for a healthcare provider with experience caring for DHH patients.

The beginning phase of the project focused on analyzing secondary quantitative data from two sources: the Massachusetts Pregnancy to Early Life Longitudinal data system and the Healthcare Cost and Utilization Project National Inpatient Sample for 2007–2016. Informed by findings from data analysis, we conducted qualitative interviews with deaf and hard-of-hearing women to learn more about their pregnancies, the kinds of care they received while they were pregnant, and ways that clinicians can improve care for pregnant DHH women. We are currently analyzing data we collected in a national survey of deaf and hard-of-hearing women about their pregnancies, and conducting qualitative interviews with clinicians, doulas, and interpreters.

Our qualitative interviews, survey, and secondary quantitative analysis will allow us to understand what deaf and hard-of-hearing women need during pregnancy, how DHH women interact with their providers, and how researchers and practitioners can ensure that these women can receive accessible healthcare before, during, and after pregnancy.

Disclaimer

Research reported in this publication was supported by the Eunice Kennedy Shriver National Institute of Child Health & Human Development of the National Institutes of Health under Award Number R01HD090103. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Part Two, Deaf and Hard-of-Hearing Mothers’ Experiences with Pregnancy Care: Explaining Disparities

Deaf and hard-of-hearing (DHH) women face numerous disparities compared with other women during pregnancy, childbirth, and beyond, including a higher rate of chronic medical conditions, pregnancy complications, and adverse birth outcomes. Our national survey of DHH women—the first of its kind—heralds a new phase in research on pregnancy and DHH women. Our interviews with DHH women, clinicians, doulas, and interpreters will help researchers more fully understand disparities, as well as DHH women’s experiences before, during, and after childbirth.

Researchers from the Lurie Institute for Disability Policy at Brandeis University and the University of Michigan Medical School have been studying the pregnancy experiences and outcomes of deaf and hard-of-hearing women. Led by co-principal investigators (PIs) Dr. Monika Mitra, director of the Lurie Institute at Brandeis, and Dr. Michael McKee, a deaf practicing physician and researcher at the University of Michigan Medical School, the study is now in its fifth year of funding.

Our research so far has found notable disparities faced by DHH women, particularly elevated risk for various chronic medical conditions, pregnancy complications, and adverse birth outcomes such as low birth weight.

More unexpectedly, as McKee describes, the study found results he had not previously encountered, namely, higher prevalence of diabetes among DHH women at younger ages. “It’s 2021 and still we’re finding that these disparities are an issue,” observes Mitra.

Note: What’s the difference between “Deaf” and “deaf”? Deaf and hard-of-hearing people sometimes use the terms “deaf” and “Deaf” to describe themselves. “Deaf” with a capital “D” suggests an identification with Deaf culture, language, and identity, whereas “deaf” with a lowercase “d” is more neutral. For example, a Deaf person may have attended a school for DHH students. Many people use one or the other exclusively, but a person might use “deaf” in one context and “Deaf” in another.

We are now analyzing data we collected through a national survey of deaf and hard-of-hearing women about their pregnancies, using themes our researchers discovered from in-depth interviews with DHH mothers. Our survey findings from over 475 deaf and hard-of-hearing women will help us learn what DHH women need during pregnancy—and how clinicians can better support them before, during, and after pregnancy.

An infographic saying “475+ survey paritcipants” and “67 interviews with DHH mothers.” Next to the text are stylized drawings of Deaf women using sign language.

Importantly, the survey was trilingual—available in ASL, English, and Spanish—and was designed to address the shortcomings of other health surveys. As Mitra points out, although some national health surveys do identify deaf and hard-of-hearing participants and other people with disabilities, these surveys are not always accessible for DHH people—many of whom do not speak English as their first language. Without accessible surveys, fewer DHH people will participate.

To ensure that our survey adequately represents racial and ethnic diversity in the population, our team worked closely with community agencies across Massachusetts and the United States to recruit survey participants from all ethnic and racial backgrounds.

Interviews with clinicians, originally scheduled for 2020, were delayed until spring 2021 because of the COVID-19 crisis. This part of the study is currently underway and aims to understand needs and barriers to pregnancy-related healthcare for deaf and hard-of-hearing women from the perspectives of clinicians, doulas, and interpreters. The study will also assess how clinicians, doulas, and interpreters perceive DHH women’s needs.

This work is part of an overarching “mixed-methods” study, meaning that it uses a variety of different qualitative and quantitative methods. For instance, the study is using interview data, survey data, and secondary analysis of existing administrative data (e.g., hospital discharge records) to gather a wide range of information about deaf and hard-of-hearing women’s experiences.

Administrative data drawn from sources on births in Massachusetts and nationwide gave us important information about birth outcomes. However, administrative data alone are not enough to understand how DHH women experience pregnancy. Mitra notes that the understanding that those data provide is “in some sense superficial.” The study’s mixed-methods design allows researchers to learn directly from DHH women and clinicians, rather than relying solely on facts and figures. This mixed-methods approach will ultimately provide a more complete understanding to answer questions about why we may be observing disparities.

Before releasing our survey, we conducted in-depth interviews with 67 deaf and hard-of-hearing women from across the U.S. The research team is currently analyzing data from the interviews with DHH women using qualitative techniques. Findings will be reported using a variety of methods including journal articles and presentations at scientific conferences.

When researchers study a community, they should consider people’s concerns, perspectives, and experiences. Our advisory board, made up of DHH mothers and clinicians who work with deaf and hard-of-hearing people, helps us do just that: board members review research findings, advise us on recruitment methods, and provide feedback about developing and using research tools.

Adrianna Smart, a Deaf advisory board member with two preteen children, points to the harms of DHH women not having access to information, including information about healthcare rights such as informed consent. The lack of access to information might be unintentional, she adds. Interpreters may not have enough time during an appointment to interpret for patients and providers. Many DHH women may also be unaware of their rights or be reluctant to request all the information they need.

After we combine and analyze our data, we will be able to develop recommendations for both DHH women who may be considering pregnancy and for clinicians. These recommendations should improve DHH women’s pregnancy experiences—and ultimately outcomes.

Related research publications

Mitra, M., Akobirshoev, I., McKee, M. M., & Iezzoni, L. I. (2016). Birth outcomes among U.S. women with hearing loss. American Journal of Preventive Medicine, 51(6), 865–873. https://doi.org/10.1016/j.amepre.2016.08.001
Mitra, M., McKee, M. M., Akobirshoev, I., Valentine, A., Ritter, G., Zhang, J., McKee, K., & Iezzoni, L. I. (2020). Pregnancy, birth, and infant outcomes among women who are deaf or hard of hearing. American Journal of Preventive Medicine, 58(3), 418–426. https://doi.org/10.1016/j.amepre.2019.10.012
Mitra, M., McKee, M. M., Akobirshoev, I., Ritter, G. A., & Valentine, A. M. (2021). Pregnancy and neonatal outcomes among deaf and hard of hearing women: Results from nationally representative data. Women’s Health Issues, 31(5), 470–477. https://doi.org/10.1016/j.whi.2021.03.005
Wu, J. P., Zhang, J., McKee, M., Akobirshoev, I., McKee, K. S., & Mitra, M. (2021). Contraceptive provision and quality care measures for insured individuals in Massachusetts who are deaf or hard of hearing. Obstetrics & Gynecology, 138(3), 398—408. https://doi.org/10.1097/AOG.0000000000004505

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