Being pregnant with a disability is not a fair experience, study finds.
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Significant research examining the experiences of pregnant people with disabilities has found that accessibility barriers and negative care experiences are more common among people with disabilities than those without disabilities.
The report, titled “Equity and Inclusion in Pregnancy Care: A Report on Pregnancy Outcomes and Healthcare Experiences of Ontarians with Disabilities,” represents a collaborative effort between Ontario-based population health data researcher ICES and experts from the University of Toronto Scarborough and the Centre for Addiction and Mental Health.
The study leveraged healthcare data from nearly 150,000 births of people with disabilities, supported by interview insights, to explore pre-conception, pregnancy, labour, birth and post-partum healthcare experiences in Ontario, Canada. It focused on individuals with a range of disabilities, including physical disabilities, sensory disabilities, developmental disabilities and multiple disabilities.
The study showed that at baseline, 13% of all pregnancies in Ontario were among people with disabilities, and that these people faced poorer care outcomes compared to the general population, less physical accessibility within care settings, and attitudinal barriers from health care staff.
In terms of medical care, emergency department visits for obstetric reasons during pregnancy were more common among women with physical disabilities (20%), developmental disabilities (27%), and multiple disabilities (25%) than those without disabilities (15%). Babies of women with developmental disabilities (9%) and multiple disabilities (10%) were more likely to be born preterm than babies of women without disabilities (6%).
The report also gathered insights from service providers to identify issues that may be impeding their ability to provide the highest quality and most accessible patient experience. Feedback on these aspects included a lack of funding to allow extra time during medical consultations with people with disabilities, a lack of resources for assistive devices, and a lack of disability-specific training and guidelines.
While one could argue that some of these statistics are, at least in part, biologically determined due to pre-existing health vulnerabilities, even more disappointing is the presence of a range of physical and attitudinal barriers identified by participants. These included a lack of knowledge among health care providers about disabilities, a lack of coordinated care between stakeholders such as social services, and disrespectful and ableist assumptions by medical staff. Physical barriers reported included difficulty using equipment such as examination tables, and challenges with communication.
One study participant who uses a wheelchair described her experience at a doctor’s appointment:
“I met [the doctor] “I met the doctor for the first time when I went to the hospital to confirm the pregnancy. He asked, ‘What are you here for?’ I was like, ‘Oh, I just found out I’m pregnant.’ And he looked down at my wheelchair for a second, then at me and said, ‘Are you here for an abortion?’ I was totally flabbergasted. He said, ‘No, we’ve been trying for a year and we’re really excited.’ It was a really strange and frightening experience.”
Among other measures, the study authors recommend a complete remodeling of pregnancy care spaces to ensure they are fully accessible to people with special mobility, communication, learning and sensory needs. Healthcare providers should invest in more targeted disability-specific training programs. In addition, flexible medical reimbursement policies for disability-related pregnancy care should be considered to allow for longer and more frequent consultations.
“There needs to be a greater focus on accessibility, which includes changing the structures and processes of pregnancy care to meet the full range of needs of people with disabilities,” said Hilary Brown, lead author of the study, an adjunct scientist at ICES and an associate professor in the department of health and society at the University of Toronto Scarborough.
“Most importantly, we need to provide person-centred care, which means we need to listen and acknowledge what people with disabilities need – otherwise we risk making changes that cause further harm.”
It is also important that new research like this continues to emerge that sheds light on underrepresented areas of disability-inclusive healthcare. After all, the stakes could not be higher in terms of our most fundamental human rights, which by definition can never be limited to vulnerable and marginalized individuals.