Minor Patients, Major Research

Illustration by Katy Dockrill

Bonny Graham is an experienced community nurse. She could see that there was a gap in the rates of childhood vaccinations between the children served by her employer, Maskwacis Health Services, and those from outside her community, 90 kilometres south of Edmonton. Health Canada reported that in 2015, the most recent year for which statistics are available, only 42 per cent of First Nations two-year-old children in Alberta had received all recommended doses of the diphtheria-tetanus-pertussis-polio vaccine compared with 78.3 per cent of non-First Nations children.

At the same time, researcher Shannon MacDonald, ’93 BSc, ’13 PhD, was thinking about that exact problem: the immunization gap. She wanted to help solve the problem and knew that she’d need to consult the experts: nurses like Graham, who work with families in their home communities.

“Shannon approached us with the research opportunity,” Graham explains. “We knew it was a good idea. It offered another way to protect our kids.” A research team was born, which called on the strengths of both the community and the faculty.

While vaccine uptake is one of Graham’s many priorities, MacDonald has spent a career on it. She encountered the problem at the University of Indonesia in 2002 while she was collecting data for her master’s thesis. During that time, she learned that children were dying in developing countries because willing families lacked access to immunizations. She reflected on her clinical experience in North America, where children were dying because their parents had opted out of available vaccinations.

“The combination of those two experiences focused my future studies on immunization,” she says. “Every child has a right to be protected.” Indeed, according to the Global Alliance for Vaccines and Immunization, more than two million children die annually from vaccine-preventable diseases.

In 2005, MacDonald started her PhD at the U of A. She graduated (after two maternity leaves) in 2013. Now an associate professor in the faculty, she has published 107 peer-reviewed articles and secured almost $25 million in research grant funding. Some of her research projects are influenced by those experiences in Indonesia. The first, in conjunction with Graham and her colleagues and community members in Maskwacis, looks at how to improve immunization rates and practices in a First Nations community and relies on community partnership.

“We ran targeted focus groups in the community to look at why vaccinations weren’t higher,” Graham says. The team conducted face-to-face interviews with 39 participants in the community’s immunization clinic — including staff, parents and grandparents — and observed clinic operations. The study, called FINCH: First Nations Childhood Immunization Project, was supported by a Canadian Institutes of Health Research (CIHR) grant valued at nearly $200,000.

“There were challenges based on social determinants of health,” Graham says. The World Health Organization defines these as non-medical factors that influence health outcomes, such as economic policies and systems, development agendas, social norms and political systems. Sometimes social determinants mean that urgent care gets in the way of preventive care.

“In our community there are child-care issues and transport issues,” says Graham. “Violence and addiction can cause unanticipated events at home. Bereavement in our community means rescheduling appointments.”

The Maskwacis team decided to tackle two barriers to childhood vaccination in the community: access and resources. It was clear that parents wanted vaccinations for their children. But with limited transportation in this large rural community, some parents were unable to make it to appointments. In addition, there were few child-care options for families, who would frequently bring a number of children to a “one child per appointment” system. This pressured nurses to either turn away or vaccinate unscheduled children.

“So, when the budget allowed, we hired a driver and changed our vehicle insurance so that the driver or nurses could transport clients from their homes to the health centre and back,” Graham says. It improved access and flexibility.

The team also wanted to start the vaccine conversation earlier, which calls on another community strength: prenatal and postnatal nursing care. Graham says the team wanted to take advantage of connections that already existed between families and front-line nurses to introduce the subject of vaccination earlier in a child’s life.

MacDonald, Graham and their research partners in Maskwacis recently launched a video called Vaccines: A FINCH Video for Expectant Parents that will screen at prenatal classes in the community and is available for other First Nations health clinics across Alberta. The video answers common questions about vaccinations, and it features First Nations animation, experiences, music and voices.

Improving vaccination rates is a work in progress, MacDonald says. “Achieving high vaccination coverage while attending to the complex and intricate realities of First Nations communities requires community-led solutions.”

MacDonald’s team is working on a second project that looks at vaccination rates for school-aged children in Alberta. Many missed their regular Grade 6 and 9 vaccines when school went online during COVID-19. At the height of the pandemic, only five per cent (of a targeted 95 per cent) of children were being vaccinated.

MacDonald’s two-year research project will look at the efficacy of catch-up vaccination programs with the aid of a nearly $160,000 grant from the Canadian Immunization Research Network. Her team will measure uptake, look at best practices — as they did in Maskwacis — and draw from the expertise of front-line providers. Research is critical, says MacDonald. “If you don’t evaluate what is and isn’t working, there’s no opportunity to improve or learn,” she says.

And sometimes research reveals surprising things. “We learned that there’s so much invisible work that nurses do,” says Graham. “Telephone reminders, following up on no-shows, arranging for transportation and sometimes discovering more pressing health needs in routine pre-vaccine assessments. We just don’t give up.”​

MacDonald’s colleague, Shannon Scott, ’06, PhD, is a pediatric nurse scientist and holds a Canada Research Chair in Knowledge Translation in Children’s Health. Her career has always been committed to pediatric nursing and improving health-related experiences.

“I only ever wanted to work with children and families,” she says. “That’s where my strength lies.”

Scott was raised in Manitoba, where she got her graduate nursing experience and clinical experience. She moved to Edmonton in 2000 to begin her PhD at the U of A and graduated in 2006.

Scott oversees a growing body of pediatric nursing research and best practices. But she knows that best practices only help children when they’re easily understood and widely practised.

“I started work in knowledge translation back in 2000 at the start of my PhD,” Scott says. Knowledge translation means using research to make decisions and inform practice.

Scott conducted the largest needs assessment in Canada to look at how acutely ill children accessed emergency health services. Health-care personnel at 32 emergency departments provided data. Scott and her team interviewed 1,000 parents in emergency waiting rooms. The researchers found that both parties craved timely information about childhood conditions and treatment.

The finding was an opportunity to look for ways to help doctors and nurses in emergency departments diagnose and treat children effectively. After all, in a remote community, emergency room personnel may not often see a child with an asthma attack or high fever. As co-director of a national mobilization initiative called Translating Emergency Knowledge for Kids (TREKK), Scott’s team created online information tools and documents offering “bottom line recommendations” about common childhood conditions to help medical professionals assess, diagnose, treat and decide when to transport children. There are hundreds of resources on the TREKK website, says Scott. “They’re evidence repositories — algorithms, clinical pathways — the full body of work.”

To address parents’ needs, she took a primary role in developing more than 45 free online informational tools to help them make decisions. These include, for example, when to care for sick children at home, when to take them to the doctor and when to rush them to an emergency department. The tools address health concerns such as croup, fever, concussion, infections and pain.

“This is not armchair theorizing,” says Scott. “We are involved with the parents, merging their experience with the best available synthesized knowledge.”

The tools for parents include interactive videos, whiteboards, infographics and animated audiobooks. The CIHR provided $2.5 million to develop this work from 2016 to 2026. The Stollery Children’s Hospital Foundation provided $1 million in 2018 for Scott and her colleague Lisa Hartling, from the Faculty of Medicine & Dentistry, to adapt the tools for several cultures and to create a parent advisory council.

The parent advisory council helps develop the tools and vets them for accuracy, understandability and inclusivity. “We have very detailed discussions about content!” says Scott. The tools are playing in waiting rooms in 380 health-care sites in Alberta, getting more 900,000 views monthly, and the initiative has gone global. Each one is downloaded as many as 100,000 times a year from the TREKK website from more than 130 countries around the world. Next up, Scott is focused on creating research-based tools about pediatric heart failure, mental health conditions, sick children with intellectual disabilities, as well as teen sexuality.

She is also part of an international group looking at how best to recruit online study subjects. “Our dataset must be integral,” she explains. After all, research informs the best patient care.