U of T alumni create self-advocacy handbook for Black patients navigating perinatal care
Two University of Toronto alumni have joined forces to improve perinatal care for Black birthing people in Canada.
Gabrielle Retta and Gemma Kabeya, who both pursued a master’s in health science at the Temerty Faculty of Medicine, founded The Black Birthing Experience Project last year. The initiative will consist of a patient handbook to self-advocacy through different stages of care and a caregiver guidebook to improve Black perinatal health care outcomes.
“A lot of the time, the needs of Black birthing people get ignored in a disproportionate amount, compared to other communities. We knew that self-advocacy was an important aspect to help increase the odds of getting a say in your care,” Retta says.
With Canada’s lack of nation-wide, systematically tracked race-based health data, Retta and Kabeya explored an alternative approach to research. They turned to their community to provide insights into the Black patient care experience. Through this, they developed a partnership with The Birth Place Lab (BPL), which hosts multidisciplinary, community-based participatory research on maternity health care within the University of British Columbia’s midwifery program in the Faculty of Medicine.
In a review of foundational studies based in the United States and the United Kingdom, they found that Black birthing people expressed autonomy concerns during perinatal care, among others. This included ignoring cultural needs in a birthing plan, refusing certain care, and administering medical interventions or procedures without patient consent during pregnancy and delivery.
“We are trying to reduce those traumatic experiences in ways that are tangible,” Kabeya says.
Black birthing people are more likely to have gynecological complications like endometriosis or pre-term births yet are less likely to be screened or monitored to prevent such issues, Retta and Kabeya explain.
“With only a year in our program, we don’t have the capacity to tackle everything, but are doing our best with the information we have right now to help our community with tips and resources,” Kabeya says.
The handbook was one of several student-led initiatives from the Translational Research Program’s Capstone Projects, which provides students an opportunity to propose and produce meaningful translational research projects in collaboration with the university, partner hospitals and community networks.
Situated in the Temerty Faculty of Medicine, the Translational Research Program brings thought leaders, students and mentors together to catalyze the transformation of scientific discoveries to improve human health.
The group adopted an asset model approach to the handbook in order to outline what good care looks like for patients and how to better implement care, rather than just focusing on the experiences of patients.
To gain a Canadian perspective, Retta and Kabeya conducted 25 informal interviews with graduate and PhD students, doctors, midwives and professionals in the women’s health and health equity fields to understand the obstacles Black birthing people face in Canadian systems.
They also partnered with several organizations in the Greater Toronto Area for feedback on the handbook and guidebook. Those partners include Jessie’s Centre, dedicated to providing comprehensive services to young mothers and families; Better Outcomes Registry and Network (BORN), the Government of Ontario’s prescribed perinatal, newborn and child registry and the Provincial Council for Maternal and Child Health, which provides evidence-based approaches for reproductive, neonatal and paediatric health services in Ontario.
“When certain issues are not being published, we have to take alternative routes and methods to addressing problems,” Kabeya says.
“Through our project, we’re highlighting the impacts of epistemological racism and the alternate approaches you can use to validate your work when publications readily ignore the issues you’re trying to address. These issues are very real – even if we can’t cite Canadian research on the topic.”
Alongside the BPL, Retta and Kabeya surveyed 145 respondents who self-identify as Black to understand differences in care delivery models and patient outcomes from midwives and obstetrician-gynecologists (OB-GYN). Results showed that support through their partner or a doula – a trained professional that provides physical and mental support during and post-pregnancy – and postpartum check-ups are factors that can improve care and help patients feel more in control of their care.
This summer, the group successfully defended the project in their Capstone Defense. They are currently working on finalizing data and feedback from patients on the handbook. Retta and Kabeya have also been approached by Toronto Metropolitan University to integrate what they’ve learned in its midwifery program’s Black Prenatal Care Module.
With sights on continuing to develop The Black Birthing Experience Project, Retta and Kabeya hope their project centers attention on the need for more evidence on the issue.
“It’s been encouraging to have partners who want us to continue this project after our program,” Retta says. “It’s been inspiring to see others working in these spaces and taking the time to mentor younger researchers who want to have an impact in this field.”