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‘Democratizing knowledge’: Shannon Scott empowers parents making critical decisions for their kids’ care

TREKK organization provides parents with ‘synthesized, highly accesible’ info to help treat children

By Laura Eggertson
February 21, 2023
Erin Hill, Children’s Hospital Research Institute of Manitoba
“I saw and lived first-hand how pediatric emergency care is different if you live in rural and remote areas, because all of our pediatric health-care professionals are centred in urban settings,” Shannon Scott says of her motivation to be a founding co-director of TREKK (Translating Emergency Knowledge for Kids).

As a single parent of three children, Shannon Scott knows too well the stress and uncertainty families face when deciding if their child’s illness requires a trip to the emergency room.

“I’ve been there many times, wondering OK — do we actually need to go to a health-care setting, or can we wait until tomorrow? Because if we go now there are four of us having to go,” says Scott, an RN, professor, and Canada Research Chair at the University of Alberta’s Faculty of Nursing in Edmonton.

“I know how tough those decisions are and the implications of those decisions.”

Providing parents with the information they need to make complex decisions about their children’s health is Scott’s goal as a founding co-director of TREKK (Translating Emergency Knowledge for Kids).

The national non-profit organization develops evidence-based decision-making videos, interactive infographics, e-books and other tools for families. The organization also produces resources and trains health-care providers at emergency departments across Canada.

“We take the best available evidence, synthesize it, and interview parents who have recently gone through this,” Scott says. “Then we develop these novel and innovative resources that are highly accessible to parents.”

TREKK grew from Scott’s passion to make sure children and youth who arrive at rural, remote or general hospitals receive the same high-quality, standardized care they would get at specialized pediatric institutes.

Disrupting lives

While developing TREKK, Scott and her colleagues visited 37 emergency departments and interviewed more than 1,000 parents and other family members to discover the type of emergencies they faced and learn the information they needed.

Like the Canada Research Chair Scott holds in knowledge translation for children’s health, the impetus for TREKK was the nurse’s childhood near Neepawa, Man., a small town about two hours west of Winnipeg.

“I saw and lived first-hand how pediatric emergency care is different if you live in rural and remote areas, because all of our pediatric health-care professionals are centred in urban settings,” Scott says.

Her mother, Janet Scott, was a nurse, as were two of Scott’s aunts. She’d listen intently to their stories of how needing to travel to Winnipeg for specialized treatment for children disrupted families’ lives — a problem that persists for people living in rural and remote areas.

By ensuring nurses and doctors working in emergency rooms at general hospitals have the knowledge, skills, training and connections to health-care professionals at pediatric institutions, Scott hopes fewer families will endure disruptions.

She hopes the knowledge parents gain will enable them to become equitable partners in their children’s care, rather than disempowered patients at the mercy of the health-care system.

Rebalancing power

Developing clear, straightforward tools for parents alongside the resources for health-care providers, as well as using families’ experiences to inform the tools for the professionals, is a deliberate strategy to rebalance the health-care power structure.

A national online network allows parents to review and offer feedback on all the tools Scott and her colleagues, including University of Alberta professor Lisa Hartling, create.

“I strongly believe a parent’s perspective is just as valuable as a health-care professional’s perspective,” Scott says. “Parents are the experts on their children, so we need to provide health-care information in a way that is relatable and understandable and not overwhelming … so parents can make the best decision for the situation they find themselves in.”

On the TREKK website, parents can learn about almost 30 issues. They include how to manage a child’s fever, bronchiolitis or asthma; how to deal with a concussion or ear infection; what to do if their child is having trouble breathing; and what to expect when arriving at an emergency department.

Many of the resources are available in different languages, including Arabic and Mi’kmaw.

Decisions about whether — or when — to take a child to hospital became particularly fraught with the arrival of the COVID-19 pandemic and the additional threats of RSV and influenza, which have overwhelmed emergency rooms across Canada.

Reassuring tools

TREKK’s tools help families work through those decisions, step-by-step.

“Parents repeatedly have told us about the importance of them seeing themselves in the resources we are developing,” Scott says. “They love the emotional reassurance in the tools.”

Scott is proud of TREKK’s international impact, thanks to the reach of the internet. People throughout the United States, Africa and China, and around the world are using the parent tools.

“We have had so many downloads — over 120,000 downloads of the fever tool from all corners of the globe,” she says.

The responses validate Scott’s decision to move into an academic and research career after her initial work as a pediatric nurse.

Although she loved working with children and families after graduating with her bachelor of nursing degree from the University of Manitoba, Scott “wanted to have a bigger influence on the health-care system,” she says.

After earning her master’s degree, also from the University of Manitoba, she worked as a clinical instructor, taking her students to work at what is now the Health Science Centre’s Children’s Hospital in Winnipeg, and lecturing at the university.

Broadening impact

Convinced of the importance of having more nurse scientists, Scott then tackled her PhD and also held a post-doctoral fellowship at the University of Alberta. That’s where she fell in love with research.

Providing high-quality nursing education and research enables Scott to change clinical practice and have the broader impact she wanted, Scott says.

“That’s what’s so unique about TREKK — it’s more than just nursing practice,” Scott says. “We’re affecting the health-care system.”

For years, Scott juggled her work, studies and research with caring for her children. She spent her free time watching their sports events.

Now that her three children are 23 and 19 (twins), Scott enjoys spending time with them outside of arenas, as well as cycling and travelling.

She hopes the lingering pandemic restrictions will soon ease, fully permitting the TREKK team to go back to more in-person visits at emergency rooms and with families, to refine and expand the resources they offer.

Scott’s work with TREKK is enabling her to help change Canada’s healthcare system by improving care for sick and injured children, in partnership with parents and families.

“It’s about democratizing knowledge,’’ she says. “It’s very rewarding.” 

Laura Eggertson is a freelance journalist based in Wolfville, N.S.