Kids Brain Health Network (KBHN) is as a network of researchers and doctors seeking to understand brain development, with the goal of improving the lives of children living with neurodevelopmental disabilities and their families.
KBHN had documents describing its research projects in technical terms for its funders and the scientific community. However, the people it ultimately aimed to serve—people living with neurodisabilities, parents, teachers, family members and so on—also needed ways to learn about its initiatives and findings.
The network hired a team of writers, including myself, to extract the key points from lengthy grant reports and summarize them in plain English, putting an emphasis on how each research project might affect kids and families. Here are some samples of those that were assigned to me:
Mapping FASD Supports for Each Child’s Life
Challenge
Every person with Fetal Alcohol Spectrum Disorder (FASD) has their own strengths and challenges. That means there is no one-size-fits-all pathway through the available interventions and services. Families have to figure out what makes the most sense given their child’s needs, age, goals and context.
Project Summary
Kids Health Brain Network has funded the development of a tool called Client-Oriented Mapping for Point of Care Access to Supports and Services (COMPASS). This resource is informed by nationwide data about the characteristics of individuals with FASD, their experiences, and the supports they’ve used at different stages of their lives.
COMPASS aims to apply past learnings to new patients, so that FASD clinics can give meaningful, evidence-based recommendations to families when their child gets a diagnosis.
For example, a preschooler might benefit if her caregivers get trained in special parenting practices, whereas a particular teen might find it helpful to get homework support, take part in alcohol education or join a group to meet others who also live with FASD and who understand what it’s like.
The project team is working on digitizing the COMPASS prototype and piloting it with clinics and families. With the help of these partners, they will make final adjustments to the tool and roll it out to diagnostic clinics Canada-wide.
Looking Towards the Future
COMPASS will make it easier for clinicians to choose and communicate recommendations for families when a child is diagnosed with fetal alcohol syndrome disorder. As a result, access to appropriate services in areas such as education, mental health, life skills and justice should improve for the one in 100 Canadians who live with FASD.
Anxiety Meter
Challenge
Anxiety is common among children and youth living with Autism Spectrum Disorder, and it can be very debilitating. An estimated 40 percent of young people with ASD also have at least one anxiety-related diagnosis, such as a phobia, social anxiety disorder or obsessive-compulsive disorder.
We know that cognitive-behavioural therapy (CBT) can help with these issues. Still, it works best when the patient can recognize and communicate their emotional states, something that often doesn’t come easily to people with ASD.
Project Summary
To make CBT more accessible for kids who are minimally verbal or who have trouble identifying when they are anxious, Dr. Kushki with the ASD team at KBHN developed a smart-phone app called Anxiety Meter. Also compatible with tablets and smartwatches, it connects wirelessly to wearable sensors that measure physiological signs of anxiety, such as heart rate. These are represented visually on the screen: for example, a bar moves from green to red, signalling to the child and their caregivers that it might be a good time to try deep breathing or another calming strategy that they learned from CBT.
The screen also shows an “anxiety bug” that the young person can crush. It thus acknowledges the feelings they are experiencing and empowers them with a sense that they can manage those feelings.
Result
The Anxiety Meter showed promise in the clinical trial, and the research team formed a partnership with the Ontario Science Centre to analyze data and continue to refine the tool. The long-term goal is to establish the effectiveness of the Anxiety Meter and prepare it for commercialization and everyday use.
Going the Extra MILE for Kids’ Math Abilities
Challenge
Math presents a steep challenge for many school-aged children, mainly when a learning disability or neurodevelopmental disorder (NDD) affects some of the skills that it requires. Students who were prenatally exposed to alcohol, for example, can struggle with visual-spatial processing, working memory, and self-regulation : the ability to monitor and exert control over their thoughts, behaviour and emotions for the sake of achieving goals.
A tutoring program called the Math Interactive Learning Experience (MILE), initially developed for kids with fetal alcohol syndrome disorder, tackles not only math itself but also the core deficits that often underlie math difficulties.
However, it relies on individual or small-group instruction, which can be a tall order for schools with limited resources. Despite ample evidence that MILE is useful, it doesn’t yet have a broad reach.
Project Summary
With support from Kids Brain Health Network, Dr. Carmen Rasmussen and Dr. Jacqueline Pei of the University of Alberta have assembled a community of practice consisting of teachers, curriculum advisors, early-years experts, numeracy consultants and researchers. Together, they will adapt MILE for classroom-wide use.
This new version of the program will help all children progress in math while integrating teaching techniques that are well-suited for supporting students with NDDs. It may still include a few small-group sessions for higher-needs kids, but compared to existing versions of MILE, it will require far fewer extra resources.
Result
Once the community of practice finishes modifying MILE and preparing educator-training materials, the next step will be piloting the adapted version of the program in Edmonton classrooms. It’s expected that it will improve not only kids’ preliminary math skills but also their abilities to focus, set goals, engage with learning and manage their behaviour.
The Neuroethics Team
Challenge
New biomarkers, new treatments, and new methods: scientific advancements bring new opportunities, but they also tend to bring further ethical questions with them. This is especially true in the field of neurodevelopmental disorders (NDDs) since it involves vulnerable populations such as children, people struggling with addictions and people with disabilities.
Project Summary
Built into NeuroDevNet (now KBHN) from day one, the Neuroethics Core examined ethical issues connected to the network’s research activities and how to navigate them. For example, investigators conducting neuroimaging studies were concerned about what to do if a child’s brain scan happened to reveal an “incidental finding”: an abnormality not related to the NDD being studied. Naturally, they would have to tell participants about anything that had definite ramifications for the child’s health. But when the clinical significance of the abnormality is less clear, the right approach is less obvious, since disclosure brings risks such as causing undue anxiety.
Scholars affiliated with the Neuroethics Core tackled this question with particular regard to informed consent and the rights of children of different ages and capacities for making decisions.
Result
More generally, the Neuroethics team worked to increase the understanding—and enable the appropriate handling—of NDD-related ethical challenges facing clinicians, patients, families, policymakers, journalists, advertisers and researchers both inside and outside of the network. Instead of assuming they already knew what stakeholders were concerned about, they asked them what their key priorities were.
Once they found out, just a few of the many areas they addressed included the risks of off-label antipsychotic prescriptions for kids with NDDs, the ramifications of screening for prenatal alcohol exposure and how doctors should respond to families requesting unproven therapies.
