While many women with disabilities are able to become pregnant, labor normally, deliver without complications, and care for their children without problems, some have experiences that require thought and advanced planning on their part and the part of their health care providers. But disabled women are not receiving the personalized care during pregnancy, childbirth, and early parenthood to which they're entitled and deserve — in fact, pregnant women with disabilities aren't having their needs met by doctors, a new study reported. The women told researchers that they need to know their options for care in order to make decisions about what's best for them in the context of their disabilities. But there's a disconcerting lack of support for women with physical or sensory impairment or long-term health conditions.
The University of Liverpool and Bournemouth University conducted the study, which was commissioned by human rights in childbirth charity, Birthrights, in 2013, surveying a large sample of women. The researchers — Dr. Bethan Collins from Liverpool and Dr. Jenny Hall, Jillian Ireland, and Professor Vanora Hundley from Bournemouth University — found that one-quarter felt they were treated less favorably because of their disability and more than half (56 percent) felt that health care providers did not have appropriate attitudes about disability. Some found birth rooms, postnatal wards, or their notes and scans "completely inaccessible," according to the study's final report.
As a result of feeling like their voices were not heard, these women reported a reduction in their choices and limited control over their pregnancies and childbirth.
"It is fundamentally important that disabled women — like all women — receive dignified maternity care that respects their human rights," said Birthrights' chair, Elizabeth Prochaska, according to Medical Xpress. She added that the research highlights the fact that "much more work" is needed by the healthcare system in order to provide high-quality, individualized care to all disabled women. And it must also mean that all women are given the information they need to make informed decisions about their care in a way that "respects their own knowledge about their bodies."
Prochaska is right in that a lot of work has to be done. The women studied reported a lack of reasonable adjustments by healthcare professionals as their experiences of their own bodies were not respected by health care professionals. The researcher offered no examples of reasonable adjustments, however, perhaps because they're unique to the women's disabilities.
"Service providers need to both respect women's knowledge of their own bodies while also providing the expert support to enable women to make informed decisions about their care," Dr. Bethan Collins, senior lecturer in occupational therapy at the University of Liverpool, added, according to Medical Xpress.
Moreover, healthcare providers need to understand that some disabled women tend to shy away from asking for the care they need, as well, according to the National League for Nursing (NLN). Women with disabilities may encounter negative experiences with medical professionals, friends and family who doubt their ability to become pregnant, carry the baby to term, deliver safely, and care for a newborn, and, as such, they may be hesitant to seek care because they anticipate negative reactions from their health care providers, too.
Doctors, friends, and family often ask them offensive questions like, "Was this pregnancy planned?" and "But how will you X, Y, or Z?" and "Don’t you think having a disabled mother will be hard on your child?" according to Scary Mommy.
Some women with disabilities have even reported that health care providers have tried to discourage them from considering pregnancy, according to the NLN. So it's important that those working in maternal health care acknowledge disabled women's efforts to ensure a healthy pregnancy and avoid negative responses to those women's pregnancies or pregnancy plans.
Disabled women should be able to have dignified experiences with pregnancy, childbirth, and early parenting, just as all women should. But there needs to be more awareness surrounding disabilities in maternal healthcare in order to provide them just that.
Check out Romper's new video series, Bearing The Motherload, where disagreeing parents from different sides of an issue sit down with a mediator and talk about how to support (and not judge) each other’s parenting perspectives. New episodes air Mondays on Facebook.