Canadian scientists are at the forefront of next-generation neurodevelopmental disability research, enhanced through technology and centered around children, families and community collaboration.
VANCOUVER, March 21, 2023 – Every day, researchers working with Kids Brain Health Network (KBHN) put science to work for children living with neurodevelopmental disabilities (NDDs), along with their caregivers, and families. Essential activities like eating, sleeping, playing and learning can be extremely challenging for children with NDDs and their families.
KBHN launched the Strategic Investment Fund (SIF) to advance innovative solutions with strong near-future potential to improve the quality of life for children with NDDs and their families across Canada. The SIF allocates more than $2.5 million to five new research ventures that span the areas of early identification, early intervention and effective evidence-based treatments, and family support. Leveraging public and private sector partnerships, the SIF ventures are expected to impact practice and policy, develop new technologies and new applications for existing technologies, and expand and scale innovations with direct benefits to children and families.
Selected through an open competition, each SIF-funded venture includes family and patient stakeholders as part of the research team. “Collaboration with families of children with NDDs, caregivers and community partners is critical to our work,” said Nicola Lewis, CEO of KBHN. “We know that the most impactful research is co-designed, co-developed and co-led with and for the people who stand to benefit from the outcomes, and the overwhelming support from our partners speaks to the strength of our commitment to collaborative scientific research.”
A non-profit organization that enables and supports excellent, innovative brain research Brain Canada contributed nearly $300,000 to support three projects – the ACT (Acceptance and Commitment Training), BCi-Move (Brain Computer interface-Move) and F-Words (Functioning, Family, Fitness, Fun, Friends, and Future) research initiatives. Funding from Brain Canada has been made possible by the Canada Brain Research Fund (CBRF), an innovative arrangement between the Government of Canada (through Health Canada) and Brain Canada Foundation. To date, Health Canada has invested over $145 million through the CBRF which has been matched by Brain Canada Foundation and its donors and partners.
“We are pleased to join forces once again with Kids Brain Health Network to invest in projects that aim to improve the lives of children in Canada with neurodevelopmental disabilities and their families,” said Dr. Vivian Poupon, President and CEO of Brain Canada, “Understanding diverse research outcomes in brain science will not only change how we diagnose and support children with brain-based disabilities, but it will also have implications for our understanding of brain health for people of all ages.”
Kids Brain Health Network (KBHN) contributed more than $600,000 to the SIF, and ventures were required to receive matching funds and in-kind contributions from community partners. This goal was far exceeded with nearly $1.9 million coming from partnering organizations.
Ventures funded through the Strategic Investment Fund (SIF) will contribute to:
- Supporting children with severe physical disabilities to move independently
BCi-Move builds on a pilot study where six children with severe physical disabilities powered a wheelchair using their brainwaves, with help from brain-computer interface (BCI) technology. Dr. Adam Kirton leads a team comprised of collaborators from the Cerebral Palsy Network, as well as universities and hospitals in Alberta and Ontario. As the only child- and family-centered pediatric BCI program in the world, the BCi-Move research team is studying whether BCI technology can be used to achieve personal mobility goals through a customized three-month training program. This innovation could support the human rights of children with neurodevelopmental disabilities, allowing them to participate and interact with their environments.
- Strengthening the mental health of family caregivers
Psychologist Dr. Johanna Lake, and caregiver-facilitators Lee Steel and Jodie Siu are training caregivers and clinicians as co-facilitators for a new type of mental health support workshop for parents of people with NDDs. The team uses Acceptance and Commitment Training, based on the well-known Acceptance and Commitment Therapy (ACT) modality, which has helped individuals develop mindfulness-based coping skills for anxiety and depression since the 1980s.
By offering support groups collaboratively led by clinicians and caregivers, this research team bridges lived experience with reliable scientific knowledge to help families of children with NDDs who are experiencing mental health challenges. After delivering 12 workshops to more than 160 caregivers from communities in Alberta, B.C., Newfoundland, Nova Scotia, Ontario and Quebec, the research team will develop a training toolkit to help organizations deliver this new ACT training program across Canada and worldwide—improving quality of life for children with NDDs by supporting their parents’ wellbeing.
- Improving autistic children’s mental health through parenting skills support
The Family Check-Up® is program builds on research showing that factors such as caregiver mental health, social connections, and access to services can influence autistic children’s wellbeing in important ways. Effective in many places and across cultures, this program aims to improve child mental health by working with parents and caregivers to identify their family’s unique strengths and challenges, set goals for change, strengthen positive parenting, and connect to needed supports. Dr. Teresa Bennett leads an Ontario-based research team aims to expand Family Check-Up®’s ecological model within other autism services to make sure that child and family wellbeing is addressed early and effectively.
- Training families and services providers in a holistic approach to child health
The F-Words—functioning, family, fitness, fun, friends, future—provide a fresh way to think about concepts from the World Health Organization (WHO) which can support the wellbeing of children with neurodevelopmental disabilities. Presenting a holistic, strengths‐based, function‐promoting, family‐centred approach to child health, these ideas have captured the attention of families and service providers from Australia to Finland. Dr. Peter Rosenbaum leads a research team from Ontario and Quebec in offering a new online training program for families and service providers, with the aim of enhancing and expanding services and supports for families, children and youth.
- Aiding communication for families of infants at risk of speech language delay
The Babbly smartphone app was developed in response to delays in intervention times for children with language delays, which can exceed 12 months in many regions. The app supports parents with play-based interventions to monitor early stages of speech development for their children and facilitate communication. Led by Dr. Anna Cormick, this Eastern Ontario-based research team brings together families and professionals to test the ease of use and effectiveness of the Babbly app for infants with language delays, and those at risk. Their findings will aid in the development of future versions of Babbly.
“Our partnership with Brain Canada has led to positive outcomes in these research ventures to date, including strengthened relationships with community partners and families of children with NDDs,” said Nicola Lewis, CEO of KBHN. “We are confident that all five Strategic Investment Fund initiatives will generate innovations that can be put into practice, to improve the quality of life for children with neurodevelopmental disabilities, and their families in our wider global community.”
About Kids Brain Health Network
A Canada-wide network that develops and harnesses scientific advances in technologies, interventions and supports with the goal of helping children with neurodevelopmental disabilities and their families live the best lives. The science of children’s brain health is making advancements and KBHN is bridging the gaps between these scientific advances and implementing solutions that directly address the needs of children and families. In delivering on its mission, KBHN is advancing federal responsibilities and priorities aimed at building a healthier future. More details: kidsbrainhealth.ca
About Brain Canada
Brain Canada plays a unique and invaluable role as a national convenor of those who support and advance brain research. A greater understanding of how the brain works contributes to the prevention, diagnosis, treatment and cure of disorders of the brain, ultimately improving the health outcomes of people in Canada and around the world. More details: www.braincanada.ca
- In developed countries globally, an estimated 7 to 14 per cent of children have neurodevelopmental disabilities (NDDs) such as autism, cerebral palsy, and fetal alcohol spectrum disorder. In Canada, as many as 1.48 million children live with neurodevelopmental disabilities (Statistics Canada 2016, 2020).
“Collaboration with families of children with NDDs, caregivers and community partners is critical to our work,” said Nicola Lewis, CEO of KBHN. “We know that the most impactful research is co-designed, co-developed and co-led with and for the people who stand to benefit from the outcomes.”