YEAR IN REVIEW 2021-22 Putting Science to Work for Families
In its twelfth year, Kids Brain Health Network expanded its research portfolio while keeping a firm emphasis on the large-scale implementation of our research outputs. Examples of these outputs include:
- Programs and interventions that make a difference for kids’ development and the whole family’s well-being
- Apps and devices that help children strengthen key skills or enjoy a better quality of life
- Policy documents for the people who make decisions that affect children and their families
- Training packages and practice guidelines for researchers, parents and the frontline professionals who support children and their families
Five new projects joined the network in 2021-2022, bringing with them partners who are ready and willing to take up its evidence-based solutions. Meanwhile, many of KBHN’s mature research projects are leading implementation studies, which discover the factors and methods that make these solutions more likely to spread, get adopted and make a lasting impact.
292+ RESEARCHERS &
222 TRAINEES
worked on KBHN’s research
projects this year
500+ CHILDREN,
FAMILY MEMBERS &
FRONTLINE WORKERS
participated in KBHN-affiliated
studies in 2021-2022
Early Identification Projects
Early Detection and
Intervention Toolkit for
Cerebral Palsy (EDIT-CP)
A knowledge-implementation project that helps medical professionals detect and treat cerebral palsy sooner
This year, EDIT-CP helped
5 rehabilitation centres across Ontario to establish programming for infants with cerebral palsy
What it is
According to international guidelines, doctors should ideally diagnose cerebral palsy (CP) before a baby’s first birthday. This way, the child can access early interventions that will help them reach their fullest potential for movement and function. However, the average age for a CP diagnosis in Canada is 18.9 months. To address this shortcoming, EDIT-CP is implementing early-detection tools in neonatal follow-up programs—which monitor infants who are at high risk of developmental conditions—and with family doctors, who see low-risk babies. The team is also building capacity for early-intervention programming with a focus on Baby CIMT, a treatment that is often helpful for a common kind of CP.
Highlights of 2021-2022
So far, the team has worked with five neonatal follow-up clinics in Ontario to implement an early-detection tool called the Hammersmith Infant Neurological Examination (HINE). For infants who come through family doctor’s offices, they’ve arranged to add crucial information related to signs of CP to the Rourke Baby Record, a guide that many physicians use at routine baby checkups. They also developed easy-to-follow illustrations of these signs, and an online resource that answers FAQs and summarizes the evidence for various early interventions.
To improve the availability of such treatments, the team helped rehabilitation centres in Ontario to establish programs in Baby CIMT. Building upon this provincial success, they now plan to expand their efforts to the national level.
FASD Code
A genomic assessment tool to identify infants and young children who are at risk of developing Fetal Alcohol Spectrum Disorder (FASD)
Principal investigators
Dr. Geoff Hicks, University of Manitoba
Dr. Brenda Elias, University of Manitoba
Dr. Paul Pavlidis, University of British Columbia
What it is
FASD Code involves a cheek swab that tests for changes that may occur throughout the genome after prenatal alcohol exposure. This makes it a simple, cost-effective way to identify young children who may develop fetal alcohol syndrome disorder. Given that children are usually school-aged before they get a diagnosis, FASD Code could allow families and service providers to understand and address a child’s challenges sooner.
Next Steps
For a study co-designed and led by the Cree Nation Tribal Health Centre, community clinics in several remote First Nations communities will implement FASD Code and help to evaluate it. The Manitoba FASD Centre will also participate in implementation research.
The Infant and Early Mental Health (IEHM) Hub for Training, Resources, & Tools
A one-stop-shop for practitioners to access resources on infant and early mental health
Principal investigators
Dr. James Reynolds, Queen’s University
Dr. Chaya Kulkarni, The Hospital for Sick Children
Over 12,000 users have an account with the IEMH Hub’s learning-management system
What it is
Mental health is crucial for people of all ages, and especially young children, because their brain development is the most active by far. The Infant and Early Mental Health Hub aims to improve young kids’ socioemotional development by enhancing the skills and knowledge of the practitioners who work with them, including social workers, early-childhood educators, home visitors and medical staff.
The IEMH Hub’s many resources include a developmental-screening training module that could improve practitioners’ ability to detect children with developmental delays, and Nurturing the Seed, a culturally sensitive developmental-support program created in consultation with Indigenous communities across Canada.
Highlights of 2021-2022
The project team, known as Infant and Early Mental Health Promotion (IEMHP), continued to populate the IEMH Hub with evidence-based resources this year, including their coaching model, Coaching Connect. So far, 10 coaching sessions have been delivered to 105 participants.
Although in-person learning remains an option, all trainings are now offered online. A learning management system that provides centralized access to trainings launched in September 2021. More than 12,000 people have signed up to it so far.
The team also established over 20 new partnerships and contracts. For example, the Ontario Association of Children’s Aid Societies funded access to the IEMHP’s 2022 Lecture Series for all 50 child-welfare agencies in Ontario. They also contracted IEMHP to develop a series of resources specifically for foster, kin or customary caregivers. In the meantime, seven new communities and agencies adopted Nurturing the Seed, which is now available in both English and French.
Early Intervention and Effective Treatment Projects
Babbly
An evaluation of an app that helps parents to promote kids’ speech and language development
Principal investigators
Dr. Anna McCormick, Children’s Hospital of Eastern Ontario
Dr. Christopher Fennell, University of Ottawa
What it is
The Babbly app uses artificial intelligence to analyze recordings of a child’s voice and to assess their speech and language development. It also provides targeted speech-promoting activity suggestions. Designed to be fun and easy to fit into everyday routines, these activities give parents the chance to participate in their child’s learning.
Next Steps
KBHN’s research will focus on whether Babbly could help families who are waiting for speech and language evaluation and services, which can take up to a year to access in Canada.
BCI-Move
An exploration of kids’ potential to gain mobility through brain-computer interfaces
Principal investigators
What it is
Brain-computer interfaces (BCIs) recognize changes in thought patterns through a non-invasive headset and transmit those signals to electronic devices. A child could think the word “go,” for example, to move a scooter forward. The BCi-Move project aims to determine if children with severely limiting physical disabilities can use this cutting-edge technology to achieve personalized mobility goals.
Next Steps
Over 12 training sessions, participating kids will explore a power-mobility training device through play-based activities while researchers monitor their skill progress, their brain activity and their level of satisfaction with the technology. These findings will lay the groundwork for BCI power mobility camps, independent play and possibly even the use of electric wheelchairs in everyday life.
Dino Island
A therapeutic game that improves attention, short-term memory and other skills in children with neurodevelopmental disabilities
Principal investigators
Dino Island has benefited more than 2,000 families so far.
What it is
Dino Island is a tablet-based game designed specifically for children with neurodevelopmental disabilities (NDDs). Studies in children with ASD and FASD have shown that it helps with attention, memory, self-regulation, emotional and behavioural control, self-confidence, the use of problem-solving strategies and academic performance. A companion website trains therapists, teachers or parents to support children in playing the game and applying the skills it strengthens to other areas of life.
Highlights of 2021-2022
New implementation sites joined the project this year, including Calgary Quest School, a specialized school for kids with disabilities, and the Mayo Clinic, which will be conducting a trial with children who’ve been treated with cranial radiation for brain tumours.
The team also began studying how Dino Island works in private homes, under the supervision of parents. Based on participant feedback, they’ve made some changes to the program that will make it easier for families to monitor their progress and keep themselves motivated.
eHealth for Neurodevelopmental Disabilities
A suite of online interventions, one of which helps children with neurodevelopmental disabilities (NDDs) to achieve a good night’s sleep. The other one helps classroom teachers meet the needs of students with NDDs.
Principal investigators
Dr. Penny Corkum, Dalhousie University
Dr. Shelly Weiss, University of Toronto
More than 100 new teachers learned about effectively supporting children with NDDs through the ASSIST program this year.
What it is
This project encompasses two online programs. The first addresses the fact that children with NDDs have an increased risk of struggling to fall and stay asleep. This sleep disruption can affect their ability to feel well and do their best during the day. Better Nights, Better Days for Children with Neurodevelopmental Disorders (BNBD-NDD) is an e-health intervention that helps parents to improve kids’ insomnia.
“Better Nights, Better Days”
ASSIST (Accessible Strategies Supporting Inclusion for Students by Teachers) helps teachers to support students with NDDs. This meets a crucial need: most mainstream classroom teachers report they don’t have adequate training to work effectively with this group of kids, despite growing demands upon them to do so.
Implementation Highlights of 2021-2022
The team is working toward making their eHealth programs commercially available. They’ve submitted trademark applications and signed a licensing agreement for ASSIST with Velsoft Training Materials, a fast-growing Canadian software company. The contract dedicates 15 per cent of revenue to research and development so that the technology and content can be updated as needed. For example, the researchers created a new module about disruptive classroom behaviour this year, in response to teacher demand.
They are also conducting sustainability and implementation studies for both ASSIST and BNBD, to increase the likelihood that teachers and families will be able to access these programs, use them effectively, stick with them and reap rewards for years to come.
Intelligent Device for Sound Sensitivity
A programmable device that will filter the soundscape for children with sound sensitivity and send a tolerable version of it into their earphones
Principal investigators
Dr. Elina Birmingham, Simon Fraser University
Dr. Siamak Arzanpour, Simon Fraser University
What it is
Many children living with autism are hypersensitive to certain sounds. Schools’ approaches for accommodating sound sensitivity include letting students wear earplugs or earmuffs or allowing them to take breaks in a quiet area. Because such strategies block or avoid all sounds indiscriminately, they interfere with the child’s full participation in class and other activities. This team of researchers is developing a device that selectively filters or reduces specific noises that a child finds distressing (e.g., dogs barking, sirens, jackhammers) while allowing them to hear other sounds, such as the teacher’s voice.
Highlights of 2021-2022
This year, the team developed a sound-filtration technique that can remove aversive sounds while preserving the intelligibility of speech, even in complex noisy conditions. They also created a visual user interface for the device, and an algorithm that will allow it to learn about new kinds of aversive sounds when users flag them. Only a few samples of these sounds are needed to help the device recognize them.
KidsAction Coaching
An approach to coaching that ensures kids with neurodevelopmental disabilities (NDDs) can participate in physical-activity programs in their communities
Principal investigators
What it is
Participating in sports and recreation brings a whole host of benefits to kids with NDDs, including the development of healthy lifestyle habits, self-esteem, self-control, physical abilities and social skills. However, community programs are often designed without them in mind.
KidsAction Coaching helps programs become more accessible to all. It’s an approach that involves understanding each child’s specific abilities, adapting activities as needed and highlighting progress. KidsAction Coaching also engages children’s families: Coaches give parents a personalized list of activities they can practice with their child at home, along with access to instructions and videos.
Highlights of 2021-2022
The team developed a website to enable online delivery of training modules for organizations, coaches and families. It includes a bank with more than 140 activities for developing gross-motor skills at home, including 23 with an Indigenous focus and 60 for very young children.
The Math Interactive Learning Experience (MILE)
An intervention that addresses the core deficits that often underlie math difficulties, such as working memory and self-regulation
Principal investigators
Dr. Jacqueline Pei, University of Alberta
Dr. Carmen Rasmussen, University of Alberta
What it is
Originally developed for children with fetal alcohol syndrome disorder, MILE is an evidence‐based intervention geared toward building the underlying cognitive skills that are critical to math. Not only do math skills improve, but also behavioural functioning in the classroom. This creates a foundation for later success in math—and school more generally.
Highlights of 2021-2022
MILE was originally a tutoring program that relied on individual or small-group instruction, which can be a tall order for schools with limited resources. To make MILE less costly to adopt and to provide a more inclusive classroom experience, this research team adapted it for teachers to use with all the children in their class, including those with gaps in their understanding in math. They achieved this with support from a community of practice consisting of math experts, consultants and teachers. The next step is to pilot the adaptation in real classrooms.
Secret Agent Society
A spy-themed life-skills program that helps school-aged children with autism to “crack the code” of emotions and social interactions
Principal investigators
Dr. Vivian Lee, Carleton University
Dr. Jonathan Weiss, York University
So far, 7 KBHN-partnered autism-service agencies have delivered Secret Agent Society to around 300 families.
What it is
Children with autism often have challenges with social skills and emotional regulation, which increases their risk of mental-health issues such as depression, anxiety disorders and behavioural challenges. The Secret Agent Society: Small Group Program (SAS: SG) digital software provides fun espionage-themed activities and tools including a digital board game, role playing and a computer game. It targets core areas of difficulty for kids with autism, such as developing desired friendships, working in teams and problem-solving. SAS:SG also helps children recognize emotions, express them in helpful ways and cope with challenging ones.
Highlights of 2021-2022
Previously, this team had shown that SAS:SG is efficacious under ideal conditions, in a tightly controlled experiment with expert facilitators at York University. This year and last, the researchers partnered with autism-service centres in the Toronto area to see whether it can be similarly helpful in real-world conditions. It turned out that participation in the program was feasible for families even during a pandemic, with a high attendance rate across all sessions. What’s more, the children who completed the program tended to see improvements in their social and emotional skills, while parents and therapists reported being highly satisfied with it.
Social ABCs
An early-intervention program for toddlers who are showing social-communication challenges that may be signs of autism
Principal investigators
To date, over 500 families have been able to access the Social ABCs.
What it is
Social ABCs is a program for toddlers with diagnosed or suspected autism and those showing signs of delayed social communication. Given that evidence-based interventions for kids under age three have not been widely available, Social ABCs is filling a service gap at a key stage of brain development when kids may benefit the most. Trained coaches work with parents one-on-one or in a group setting, teaching them strategies for helping their toddlers to communicate and interact socially. A KBHN-funded team has been establishing the evidence base for the program and improving access to it across the country.
Social ABCs: Helping Toddlers and Parents Connect
Highlights of 2021-2022
The team has set up a website to ensure people can learn about Social ABCs from a single reliable source, with information that is kept up-to-date.
In the hopes of making Social ABCs delivery more flexible, the researchers conducted a trial of a virtual version of the program’s group-based model, to see if it can be as effective as the in-person version. Results were promising.
Seven new community-implementation sites joined the project during this year, one of which was a province-wide partnership with Prince Edward Island. Each site has one or two coaches who are receiving enhanced training so that they will be able to train other coaches going forward.
Family Support Projects
Acceptance and Commitment Training (ACT) for Family Caregivers
Workshops that help the family caregivers of people with neurodevelopmental disabilities to cope with psychological pain
What it is
ACT is an intervention that helps people improve their mental well-being by accepting their thoughts and feelings—even those that are painful—and living an engaged, meaningful life aligned with their values. This research team has helped to develop ACT-based workshops that are co-led by clinicians and caregivers together. Caregivers of people with autism and fetal alcohol spectrum disorder (FASD) who’ve participated in these workshops have reported feeling less depressed, stressed and isolated.
Next Steps
The team has been training new facilitators across Canada to deliver ACT workshops, both in person and online. The researchers will investigate what factors make it easy or hard for clinicians and caregivers to work together in delivering the intervention, whether or not it enhances participants’ mental health and resilience, and how it might need to be adapted as it spreads into new agencies and communities.
The Family Check-Up
A program that improves the mental health of children with autism and their caregivers. Practitioners work with parents to identify the family’s unique strengths and challenges, set goals for change, strengthen positive-parenting skills and connect to needed supports
Principal investigators
Dr. Teresa Bennett, McMaster University
Dr. Irene Drmic, McMaster Children’s Hospital
What it is
Research has shown that access to services, social connections and parenting skills can influence families’ well-being in important ways. Despite this knowledge, Canadian autism services rarely ask about—or act upon—these known factors. The Family Check-Up program aims to change this reality. Parents first complete an assessment that helps the clinician to provide non-judgmental information about strengths and areas for improvement in parenting, as well as services in the community that could help the family. In addition, short sessions are available to help parents gain practical skills to address the specific challenges they’re facing.
Next Steps
Studies have found that Family Check-Up often improves long-term child and caregiver mental health in families with non-autistic children, but we don’t yet know if it can be delivered effectively within an autism-service setting. This research team is studying this question by helping to establish a Family Check-Up clinical team within the McMaster Children’s Hospital Autism Program. They will study whether it reduces emotional and behavioural problems in autistic children and improves parent well-being. They will also learn about how best to implement it into other autism-service centres.
Client-Oriented Mapping for Point of Care Access to Supports and Services (FASD COMPASS)
A tool that makes it easier for clinicians to choose and communicate targeted recommendations for families when a child is diagnosed with fetal alcohol spectrum disorder (FASD)
Principal investigators
Dr. Jocelynn Cook, University of Ottawa
Dr. Jacqueline Pei, University of Alberta
Dr. Kaitlyn McLachlan, University of Guelph
What it is
Every person with FASD has their own strengths and challenges. That means there’s no one-size-fits-all pathway through the available supports and services. Instead, families have to figure out what makes the most sense given their child’s needs, age, goals and context. Client-Oriented Mapping for Point of Care Access to Supports and Services (COMPASS) is a resource 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 (e.g. academic coaching, mental-health services, social-skills training, etc.) 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.
Highlights of 2021-2022
Using the KBHN-supported National FASD database and interviews with four FASD-clinic partners about how they work with their clients, this research team created a COMPASS prototype that can now be implemented and evaluated.
Fetal Alcohol Resource Program (FARP)
A bilingual program that provides service navigation and other forms of support for people with fetal alcohol spectrum disorder (FASD) and their families. It also equips service providers in the wider community to understand and address the needs of people with FASD
Principal investigators
To date, FARP has trained more than 4,850 people working in sectors such as education, health, law enforcement and social services. The team has also responded to over 900 requests from families for navigational and clinical support.
What It Is
Now active in three Ontario regions, FARP began as a navigation service, helping to connect people living with FASD and their families to existing programs in their community. Now it also hosts support groups and provides families with FASD workers who can help them to get a diagnosis, understand the medical system, advocate for their children at school, and more.
In the wider community, FARP raises awareness of FASD and trains professionals from a variety of sectors (e.g. education, healthcare, mental health, criminal justice, child welfare and housing) about the disorder and how to improve the ways they serve people.
“The Fetal Alcohol Resource Program”
Highlights of 2021-2022
In September 2021, FARP organized an awareness walk in Ottawa that put a focus on people’s lived experiences with FASD. Throughout the rest of the year, it hosted 149 support-group meetings for a total of 601 caregivers, teens and children. FARP is also seeing an increased demand for its FASD worker program, to the point where there is now a waiting list for this valued resource.
FARP is increasingly recognized for its FASD expertise. This year, it delivered 17 English-language webinars to a total of 850 frontline workers and agency staff, and five webinars in French to another 210 participants. The team also launched a community of practice for Ontario’s FASD workers, where 60 participants meet regularly to exchange knowledge and work toward standardizing their practice across the province.
F-Words Foundations
A course that encourages people to approach childhood disability with a focus on factors that are important for all kids’ healthy development, namely functioning, family, fitness, fun, friends and the future
Principal investigators
Dr. Peter Rosenbaum, CanChild
Dr. Andrea Cross, CanChild
Dr. Rachel Teplicky, CanChild
1,050 people have accessed the F-Words course so far.
What it is
The F-words are six key areas that this research team promotes as the main focus in childhood disability. Built upon the World Health Organization’s International Classification of Functioning, Disability and Health framework, they encourage everyone to think about factors that are important to any child’s development and well-being, such as their activities and environment. Introducing this way of thinking to families and service providers can result in measurable changes to self-reported family empowerment, parenting confidence, and experiences of family-centred service.
Next Steps
This project aims to make foundational F-Words training available across Canada by creating a free, self-paced online course in English and French. The research team will evaluate its acceptability, feasibility and usability through online surveys and interviews. They’ll also compare it to an in-person version of the course.
The Integrated Navigational Support Program
An initiative working with local partners to build better regional systems of navigation, so that families have an easier time finding and accessing the services they need
Principal investigators
Dr. David Nicholas, University of Calgary
Dr. Lucyna Lach, McGill University
What It Is
Families raising children with neurodevelopmental disabilities (NDDs) are often forced to navigate a confusing array of siloed, uncoordinated services spanning different sectors. They frequently struggle to determine what supports are available, which ones are appropriate for them at any given time, and how to access them—especially at key life junctures such as diagnosis, school entry or transition to adulthood.
These researchers have collaborated with local service providers in three places—Calgary, Vancouver and Yukon—to improve service navigation, bridge service gaps and reduce barriers to access. They are also sharing learnings, tips and approaches that could help other regions across the country to follow their lead.
This project is funded by a generous donation from The Azrieli Foundation/La Fondation Azrieli to the Kids Brain Health Foundation. “Our work in neurodevelopment spans neurons to networks to neighbourhoods,” says Naomi Azrieli, Chair and CEO. “It is crucial to not only support ground-breaking research and clinical care for neurodivergent people, but also initiatives like the Integrated Navigational Support Program, to ensure individuals, families and communities can access and benefit from these resources.”
Next Steps
Each region is alleviating the burden that navigation places on families in ways that work for the local context. This year, the Yukon team secured ongoing funding and a permanent office for navigation services. Partners in Alberta developed training modules for professional navigators, partners in British Columbia created a navigators’ community of practice and both of these teams evaluated peer-support programs where parents of children with NDDs helped other parents to identify and access resources.
At a country-wide level, the investigators hosted a conference where people shared what they’ve learned about building navigation capacity. They also published and distributed a community guide offering strategies for improving the odds that families of children with NDDs in any given region can get the services they need, when they need them.
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