Supporting people with disabilities in pregnancy

Canadian research takes aim at the lack of resources for people with a physical, sensory, or developmental disability who want to have a baby

Pregnancy and those first months following a birth come with a mixed bag of experiences – from joy and wonderment to morning sickness, back pain, and exhaustion. These challenges are made more complex when people with disabilities have to navigate a health care system that was not made with them in mind.

“We see pregnancy as this period of happiness, as it should be, but for me, I experienced additional barriers in health care that caused stress and impacted my family,” said Laurie Proulx, a mother of two who for most of her life has lived with Juvenile Idiopathic Arthritis, the most common type of arthritis in kids and teens.

Proulx and University of Toronto researcher Hilary Brown are collaborating on a novel Canadian study that is addressing a health care inequality that is more common than many realize. As Brown uncovered in a 2020 study using population-based health data from more than 380,000 people with disabilities, one in eight pregnancies in Ontario is to a person with a physical, sensory, or developmental disability. And that number is rising due to advancements in medicine and human rights.

The research team used population-based health data to examine pregnancy outcomes and interviewed 31 persons with disabilities to learn about their experiences in navigating a health system ill-equipped to deal with their unique needs.

Although many from the study had healthy pregnancies and benefited from multidisciplinary care teams and providers who advocated for their needs, there were also many barriers to accessible maternal care.

For example, there was a woman who visited a physician for her first prenatal care appointment. Because she used a wheelchair, the doctor assumed she was there for an abortion. Another parent who is deaf recalled their frustration when a pediatrician neglected to have a sign language interpreter present.

For people whose disabilities may not always be obvious, like a developmental disability, researchers learned how some parents-to-be were reluctant to disclose their disability. They feared being stigmatized or even worse – that the doctor would call child welfare, assuming the person was incapable of raising a child.

“There’s a lack of awareness that most people with disabilities can have healthy pregnancies,” said Brown, a Canada Research Chair in Disability and Reproductive Health and Associate Professor in the Department of Health and Society, University of Toronto Scarborough. “When complications do arise, it’s often driven by structural and social barriers to care, such as poverty or inaccessible health care spaces and resources.”

These stories were all too familiar to Proulx, who was alarmed to discover a lack of data on whether the medications she had taken for years for persistent inflammation, joint pain, and stiffness might harm her unborn baby.

“The biggest challenge was having to stop taking medications I’ve relied on my entire life to manage or minimize the impacts of my disability. They didn’t know if my medications were safe to take during pregnancy or while breastfeeding,” explained Proulx, Managing Director of the Canadian Arthritis Patient Alliance.

As one of two peer researchers with disabilities on the research team, Proulx helped Brown, postdoctoral fellow Dr. Lesley Tarasoff, and the co-investigators structure and conduct interviews, interpret the findings, and develop recommendations and resources.

“This proved particularly important for the interviews,” said Proulx, who first became involved in research as a patient partner about 15 years ago with the Canadian Arthritis Network. “I would introduce myself as a disabled person and actively acknowledge participants’ experiences since I’ve been there and experienced similar things. It helps create a safer and more respectful environment for sharing sensitive experiences.”

For Proulx, that experience during her second pregnancy proved life threatening for both her and her newborn son. “If I had been able to stay on my medications and had the data around the medication safety during my pregnancy, neither me nor my son would likely have ended up in the ICU,” she recalled.

Proulx’s experience was reflected in the findings seen in the population-based health data. A 2022 study by Brown found that newborns of people with disabilities had higher rates of ICU admission, along with complications and preterm birth. Her related study from 2021 found an elevated risk of severe morbidity and mortality for pregnant people with a disability. Although these serious outcomes are rare, they do point to the need to provide pregnant people with disabilities with appropriate supports.

The need for resources and training

The interviews with patients, as well as 31 health care professionals, found that one of the biggest challenges is lack of access to disability-specific resources and supports before a pregnancy, during pregnancy, and postpartum.

“We heard repeatedly about people’s unmet information needs. They wanted to know how pregnancy might impact their disability and their pregnancy outcomes, but this information wasn’t available,” said Brown, whose pioneering research related to pregnancy and people with disabilities began about a decade ago, funded primarily by CIHR and the National Institutes of Health in the U.S.

Several patients interviewed for the study also reported having negative interactions with providers who seemed to have limited disability-related training or did not take the time to understand the patient’s disability-related concerns.

“Even before I was thinking about getting pregnant, a doctor told me to make sure I have a strong partner if I wanted to have children,” said Proulx, whose own experiences led her to develop resources for people with rheumatic diseases. “Of course, everyone needs a strong partner with a newborn, but they assumed that because of my disability I would be physically incapable of being a parent.”

Health care professionals identified this lack of training and insufficient resources as their top concerns in caring for pregnant people with disabilities.

“It was clear from these interviews that there is a gap in data, guidelines, provider training, and resources that needed to be addressed,” said Brown.

These gaps, she added, stem from a history of eugenics imposed on people with disabilities throughout the 20th century.

“Up until the 1970s, involuntary sterilization of people with disabilities was quite common and legal in Canada, and many large institutions for people with developmental disabilities didn't close in Ontario until 2009,” said Brown. “This has resulted in lingering negative societal assumptions and attitudes toward disability, sexuality, pregnancy, and parenting that persist today. Those assumptions have also filtered into what’s taught or not taught in medical curriculum.”

Turning evidence into action

Work is well underway to put the team’s research findings into action. A partnership with the Provincial Council for Maternal and Child Health (PCMCH) has created three bilingual (English and French) learning resources to support health care providers, administrators, and pregnant people with disabilities.

The goal is to raise awareness of the accessibility of spaces for those with physical and sensory disabilities, the communication needs of those with sensory disabilities, and the learning needs of those with developmental disabilities, along with how disability intersects with other social determinants of health, including poverty and experiences of racism.

The resource for health care professionals also stresses the importance of coordinating care across different medical specialities, disability supports (e.g., transportation), social services (e.g., financial aid, housing services), and community care providers.

“The resources we created were circulated through the PCMCH’s networks to reach all hospital CEOs, health care administrators and other health care professionals across the province,” said Brown. “Over a thousand people have viewed these resources so far.”

A similar resource was developed in partnership with the Public Health Nursing Practice, Research and Education Program.

“We finally have good Canadian data showing the health disparities and gaps in health care,” said Brown. “Now action is needed to address them.”

Date modified:

2024-03-01