By: Bill Clarke, Senior Communications Advisor, PCMCH, with assistance from Alexandra Thorp, Senior Program Manager, PCMCH.
Three new Disability and Pregnancy resources are now available to support healthcare providers, administrators and pregnant patients with disabilities. Over the last year, the Provincial Council for Maternal and Child Health (PCMCH) engaged in a collaborative exercise with Dr. Hilary Brown, Dr. Yona Lunsky, Dr. Lesley Tarasoff and their team from the University of Toronto to develop evidence-based resources to support healthy pregnancies, birthing experiences and postpartum outcomes for people with disabilities. Each resource contains information about disparities people with disabilities can experience that impact access to healthcare and pregnancy outcomes. They also include recommendations for healthcare providers and administrators about how to address such disparities and provide advice for Ontario birthing parents with disabilities about how to access perinatal and postpartum care.
“Our data show that one in eight pregnancies in Ontario are to people with a physical, sensory or developmental disability1," says Dr. Brown. “And yet, there are few pregnancy-related resources created with the needs of people with disabilities in mind."
Most people with disabilities have healthy pregnancies; however, compared to people without disabilities, they have slightly elevated risks of complications like gestational diabetes or hypertension2, or rarer but significant complications like hemorrhage3, that could be preventable through tailored pregnancy care. In addition, people with disabilities experience higher rates of physical violence and housing and food instability. According to Dr. Brown, there is also a lack of education around disability available to obstetrical care providers. “Many providers we talked to noted that they never received any formal training related to disability," says Brown. “Any knowledge they had was due to their own efforts."
At the same time, people with disabilities reported frustration in navigating the obstetrical care system. To ensure the resources met patient needs, people with lived experience of disability and pregnancy participated in the research and co-developed the resources. The views of patient participants and/or the disability community are incorporated within the documents, as well. “There is community-specific knowledge, history and perspectives that are critical to informing research," says Laurie Proulx, a co-researcher and co-author of the resources, and a parent living with a disability. “Often “ableism" dominates our societal culture, and this bias can affect how research is disseminated and used in clinical practice."
Proulx describes herself as a disabled mom of two children.* The lack of balanced information she received negatively impacted her confidence. “Well before I was considering pregnancy, a physician told me I would need a strong partner if I wanted to have children," she explains. “Further experiences emphasized the complications and risks that could happen to me and the baby. It made me doubt my ability to be a parent. While I am a strong supporter of self-advocacy, healthcare providers also need to listen and acknowledge the perspectives of disabled people."
Study participants who reported positive pregnancy experiences often said it started with care providers' questions. “We heard from participants, and from our advisory committee, that people with disabilities are experts in their own care, so ask them what works for them," Brown says. “We heard many stories of providers making assumptions about the participants' disabilities and what they might need. Although providers need to ensure that required accommodations are in place, positive pregnancy experiences often started with providers asking specific questions about patients' disability-related and other needs, with care plans taking a patient-centred approach."
The PCMCH/University of Toronto Disability and Pregnancy resources for healthcare providers, administrators and pregnant patients are available in English, French and plain language versions.
*Note: The resources use “people with disabilities" and “disabled people" interchangeably to acknowledge the different ways in which people choose to describe themselves in relation to their disability.
References
1. Brown HK, Chen S, Guttmann A, et al. Rates of recognized pregnancy in women with disabilities in Ontario, Canada. Am J Obstet Gynecol 2020;222(2):189-92.
2. Tarasoff LA, Salaeva D, Ravindran S, Malik H, Brown HK. Maternal disability and risk for pregnancy, delivery, and postpartum complications: A systematic review and meta-analysis. Am J Obstet Gynecol 2020;222(1):27-40.
3. Brown HK, Ray J, Chen S, et al. Association of pre-existing disability with severe maternal morbidity or maternal mortality in Ontario, Canada. JAMA Netw Open 2021;4(2):e2034993.
For more information, contact Bill Clarke, Communications Advisor, PCMCH at bill.clarke@pcmch.on.ca