By Laura McCaffrey
Dr. Kristin Connor is not your typical infectious disease researcher. In fact, she’s not an infectious disease researcher at all.
How, then, did the assistant professor of health sciences at Carleton University find herself involved in a study about HIV exposure in the womb? The answer: partnership.
Dr. Connor is collaborating with a team of clinician scientists in Pretoria, South Africa, on a research project that investigates how being exposed to, but not infected with, HIV in the womb influences the health trajectories of an infant long-term. The study, which aims to recruit 300 mother-infant pairs over the course of a few years, is multidisciplinary in nature; it draws on expertise from immunologists, obstetricians, pediatricians, dieticians, public health and policy experts and on Dr. Connor’s own expertise in maternal-child health and the developmental origins of health and disease.
“I’m not an immunologist or an HIV researcher,” Connor admits. “I’m primarily interested in metabolic and nutritional exposures in early life. But poor maternal metabolic health or nutrition often are associated with an underlying sub-clinical, pro-inflammatory environment and I’m interested in understanding how that heightened inflammation can affect the growth and development of the fetus and infant, and what we can do to optimise early health trajectories.
“I was interested in understanding early life exposures in vulnerable populations and translating my experience and expertise to situations outside of the maternal health and pregnancy conditions that I typically study. A Carleton immunologist colleague, Dr. Edana Cassol, put my team in touch with contacts she had in South Africa, who in turn connected us with the Research Centre for Maternal, Fetal, Newborn and Child Health Care Strategies in Pretoria.”
What started as an open conversation about shared interests organically blossomed into a study concept, a successful grant application and the development of an interactive community workshop.
Aptly named after the Zulu word meaning ‘to grow,’ the Siyakhula Collaborative Workshop was a two-day event held in November 2018 that sought to shed light on the relationship between biological, social and environmental factors on health outcomes in persons living with HIV and their infants. Held in Pretoria, South Africa, the workshop brought together 'a group of international, multidisciplinary health scientists, clinicians and stakeholders to build capacity for research and training in HIV-infection and women’s and infant’s health across geographical and disciplinary boundaries.'
For Connor and her team, hearing the perspectives of stakeholders who will be affected by the project—specifically, pregnant people living with HIV—was critical.
“When you’re doing research on any population, you need to have their voice at the table from the beginning,” Connor argues. “We wanted to work with those women with lived experience, to find practical solutions that address their actual challenges and health concerns.”
The workshop followed the collaborative team’s initial feasibility study for the project. “Before proceeding with a larger-scale project, we needed to see if we could successfully recruit study participants from that geographical area. We also needed to collect preliminary data that could be used in grant applications and that could inform our research going forward,” says Connor.
“After the successful completion of the feasibility study, I received a grant from the Canadian Institutes of Health Research (CIHR) to support a planning workshop. Our original goal for the workshop was to plan the next phases of the work and to understand how we could best work together.”
To the team’s pleasant surprise, the workshop delivered on much more than just its planning objectives.
Connor explains: “In addition to the clinicians and scientists who participated in the workshop from a research perspective, people with lived experience as well as front-line workers and public health and policy specialists attended. During breakout sessions, these individuals had discussions about how they can better translate knowledge to their units to improve education and information transfer between government, caregivers and patients. This was an unintended but powerful outcome. Although the participants came into the workshop with different perspectives and objectives, we were all working together toward the shared goal of improving maternal and infant health.”
Similarly, there were unexpected benefits for the population of pregnant women living with HIV.
“During the workshop, I spoke to a woman who was grateful to be part of the study as she had found a sense of comradery with the other women,” Connor shares. “From the study and workshop, a community of empowered women has grown. These women can connect with each other and discuss their shared challenges and what they’re learning.”
With just over 200 of the planned 300 mother-infant pairs recruited, the international and interdisciplinary team is ready for what comes next. As the result of the workshop, they have collected meaningful ideas, perspectives and input that can be directly leveraged through the remainder of the project.
Even after the workshop, that collaborative spirit has persisted. “Since the workshop, many participants have been in contact with us and with each other, sharing ideas,” says Connor.
Through a collective cause, the team has successfully created a lasting collaborative environment that will benefit their work and ultimately contribute to the well-being of hundreds of people living with HIV and their babies.
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