Women with disabilities are nearly twice as likely to experience life-threatening pregnancy complications or maternal death, a new study from the University of Toronto has found.
The research, which is the largest study of maternal outcomes for women with disabilities in Canadian history, shines a spotlight on the urgent need for improved pregnancy guidelines for women with disabilities, as well as services that consider accessibility related needs.
Researchers looked at health record data from 220,000 women with physical, sensory, and intellectual or developmental disabilities, as well as 1.6 million women without disabilities, who gave birth over a 15-year period between 2003 and 2018.
Over this period, the study found that there were 14 maternal deaths per 100,000 births among women with disabilities, compared to 8 in 100,000 among women without disabilities. Women with multiple disabilities were also at double the risk for negative pregnancy outcomes compared to women without disabilities.
Hilary Brown, lead researcher on the study and an Assistant Professor in the Department of Health and Society at University of Toronto, said social factors like barriers to employment, education, stable housing and access to health care, and medical factors, like higher incidence of chronic disease, can result in negative pregnancy outcomes for women with disabilities.
Brown also said that after accounting for these social and medical factors, there are still disparities between outcomes for women with and without disabilities, and that there are not enough obstetric programs for women with disabilities in Canada.
“Pregnancy guidelines specific to the needs of Canadian women with disabilities do not currently exist, and there are few obstetric programs created with the needs of women with disabilities in mind,” says Brown.
Pregnancy rates for women with disabilities have risen over the past 20 years in Canada; they now account for nearly one in eight births.
“At the same time, health-care guidelines in Canada on how to best provide pregnancy-related care to these women has not improved,” says Brown. “Women with disabilities are more likely than their peers to experience social and medical risk factors, but until now rates of life-threatening pregnancy complications or maternal death among this group have been relatively unknown.”
Brown points to a lack of pre-conception programs tailored to meet the needs of women with disabilities, and inadequate disability-related training for obstetrical health care providers. Meanwhile, stigma and discrimination still impede access to adequate healthcare for pregnant women with disabilities.
“Many of the mothers with disabilities that we talk to have faced discriminatory attitudes about their pregnancies, and it needs to change,” Brown said.
“Society is shifting to better allow women with disabilities to become pregnant and be mothers. It’s time for us to address how disability shapes access to health care and how it interacts with other risk factors like poverty to ensure that these life-threatening pregnancy complications and maternal death rates are reduced.”