'FER brings parents and researchers together to learn from each other about how to maximize a productive partnership'
There are many questions scientists hope to answer when it comes to brain-based disabilities like Autism and Fetal Alcohol Spectrum Disorder. To make sure they’re asking the right questions, it’s important for families to be involved in the research process.
An online course supported by KBHN is doing just this
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When Kristina McGuire’s son, Sam, was born with a heart defect called hypoplastic left heart syndrome (HLHS), she felt she had a lot to learn. Despite her experience as a nurse in a neonatal intensive care unit, she wasn’t yet comfortable with his complex needs. “We didn’t have the critically ill babies [in my NICU], so I’d never dealt with that before,” she says. “I felt I needed to step up my game.”
Sam, who has undergone five open-heart surgeries, spent much of the first year of his life in hospital with his family. “I spent a lot of that time finding out what HLHS was and what we could expect for kids like Sam,” McGuire says.
Wanting to make sure the decisions she was taking for her child were based in evidence, McGuire grew interested in consulting scientific research—and eventually, in helping to generate it. So, when her eldest daughter Kate was diagnosed with autism spectrum disorder at age eight, McGuire looked for ways to add to the body of knowledge about that condition, especially the lesser-known ways it shows in girls.
Still, much of the experience she’d gained from parenting her kids remained untapped. So in 2019, to get a better understanding of researcher’s perspectives and how she could deepen her contributions to their work, she enrolled in a 10-week web-based course called Family Engagement in Research (FER).
Certified by McMaster University and sponsored primarily by Kids Brain Health Network, FER brings parents and researchers together to learn from each other about how to maximize a productive partnership. By doing so, it aims to shape the future of Canadian neurodevelopmental research, anchoring it in the real-life needs of children and their families....