Cycle III Research Projects
Physical activity is good for all children, but has particular benefits for children with neurodevelopmental disabilities. This partnership between KBHN researchers and Special Olympics BC (SOBC) is implementing a new, evidence-based training program for SOBC volunteer coaches. The needs-based, goal-oriented, personalized, and family-engaged approach to supporting children with intellectual and neurodevelopmental disabilities draws on prior KBHN-funded research that demonstrated positive physical, cognitive and social-emotional outcomes for participating children, as well as improvements in mental health and wellbeing among parents. Co-developed with SOBC, the project is designed to strengthen the impact of SOBC’s coaching and physical activity programs, and to be more responsive to the developmental goals of participating families and children. The research team anticipates that diffusion of the coaching approach, scheduled to pilot in September 2019 in the Surrey and Vancouver school districts, will have a transformative effect on community-based physical activity interventions for children with intellectual and neurodevelopmental disabilities. An additional $437K in funding from the BC Ministry of Health and Ministry of Child and Family Development will support a three-year extension of the project to Indigenous families and rural communities within the province (2019-2022).
Looking towards Cycle III, the project team plans to implement the new coaching model outside British Columbia, initially focusing their efforts in Prince Edward Island and Alberta.
Find out more: https://youtu.be/GHPckuHgXrU
Families raising children with Fetal Alcohol Spectrum Disorder (FASD) often feel isolated and distressed, with no idea where to turn for support and resources. In partnership with Citizen Advocacy Ottawa and other organizations, Kids Brain Health Network (KBHN) launched the Fetal Alcohol Resource Program in 2015 to support people of all ages with FASD and their families in the Ottawa region. To date, FARP has increased the knowledge of FASD significantly for over 3,500 health practitioners, professionals, and frontline service workers across education, justice, housing, health and other sectors through customized FASD training workshops. Workshop participants report that they have translated this knowledge into modified services, increased sensitivity and awareness, and the ability to identify FASD red flags in the populations they serve. FARP has also responded to more than 550 requests for navigating services and clinical support.
FARP’s capacity to change the trajectory of children, youth and adults with FASD in the Ottawa region has been recognized more broadly. In 2018, the team was subcontracted by the Children’s Hospital of Eastern Ontario, with funding provided by the Ontario Ministry of Children, Community and Social Services, to provide support for individuals and families impacted by FASD in the Ottawa region as part of the Government of Ontario’s new four-year FASD strategy. FARP’s successes have also made it a model for new navigation programs KBHN is developing to support children and their families with a broader range of neurodevelopmental disabilities in three other provinces. In addition, program staff are networking with community physicians to work towards implementation of a multi-disciplinary FASD diagnostic clinic in the Ottawa region.
Looking towards Cycle III, FARP will extend training workshops to more service agencies and areas of the province, including Stormont, Dundas & Glengarry and Prescott-Russell, offer services in both official languages, and will evaluate the impact of FARP’s programs on FASD awareness and services offered by frontline service providers.
Recent prevalence studies suggest that FASD affects a million people in Canada, although FASD researchers consider these estimates too low, as many children, youth and adults languish without access to the costly and time-consuming team approach required to establish the diagnosis. Currently, definitive diagnosis is often not possible because the history of prenatal exposure to alcohol can’t be confirmed.
An easily accessed, biological indicator of prenatal alcohol exposure could transform the lives of individuals living with FASD, easing and speeding access to personalized intervention and supports in early life. This is the focus of the genomic assessment tool project, a collaboration between KBHN neuroinformatics and epigenetics experts. Building on earlier Network-funded research that pointed towards an epigenetic signature unique to FASD, the genomic assessment tool team is working to validate the biomarkers identified – and develop them into an early diagnostic tool (FASD Code) for at-risk infants and children. Working closely with community partners in Manitoba, the research team is refining and validating epigenetic biomarker instruments; developing ethical guidelines for clinical and health care delivery of FASD Code; and conducting a survey of members of at-risk communities. This work will inform the development of a co-produced pathway for diagnosis, care and support for children being assessed for FASD. Decreasing stigma and promoting the dignity of children, families and communities involved in the project are key objectives.
Looking towards Cycle III, the team anticipates being able to utilize FASD Code to implement early diagnosis in partner communities. Designed for replication and scalability at the community, provincial or national level, FASD Code will begin paving the way for robust, personalized and cost-effective identification of prenatal alcohol exposure and FASD for any individual, prioritizing at-risk, but not-yet-symptomatic infants and children.
Despite the known value of culturally meaningful practice in supporting positive mental health in Indigenous communities, there is a lack of culturally informed developmental screening tools and interventions to serve the specific needs of this at-risk population. Drs. Kulkarni and Reynolds are working to address this gap by building on their successes in Cycle II validating Hand in Hand, a combination of standardized screening tools coupled with customized developmental support planning for at-risk infants and toddlers. Nurturing the Seed is a culturally-informed screening and intervention model designed to support the work of front line practitioners (both Indigenous and non-Indigenous workers) in addressing the developmental needs of young at-risk Indigenous children. Nurturing the Seed melds worldviews, rituals and parenting practices distinct to Indigenous communities with Hand in Hand’s evidence-based assessment tools and customized developmental support planning. Objectives of the Nurturing the Seed project are to: (1) train non-indigenous service workers to adopt a culturally informed approach to supporting at-risk children and families from Indigenous communities; and (2) evaluate the efficacy of Nurturing the Seed by examining changes in child development scores, as well as global measures of parent wellbeing and parenting stress within the caregiver-child relationship.
Looking towards Cycle III, the researchers plan to establish proof of principle for extending the use of an early screening and intervention model to Indigenous populations across Canada, and improving the sensitivity, aptitude and skill set of frontline service agencies who work with Indigenous communities. The project team envisions adding 3-5 additional communities to the program each year over the next three years.
More than 90% of children with neurodevelopmental disabilities experience sleep problems that affect their physical and mental health, as well as their caregivers’ well-being. Behavioural insomnia is the most frequent cause of sleep problems in all children, but families often can’t get access to specialists who offer treatment. In Cycle II, Dr. Penny Corkum and Dr. Shelly Weiss developed an adapted version of a well-validated eHealth sleep intervention for typically developing children, called Better Nights, Better Days. Their modifications have resulted in Better Nights Better Days-NDD, a unique program intended to address sleep issues across a range of neurodevelopmental disabilities, including autism, FASD, cerebral palsy and ADHD. The BNBD-NDD team is currently conducting a pan-Canadian randomized controlled trial (RCT) of the intervention, evaluating the efficacy of BNBD-NDD as a treatment for improving sleep, as well as follow-on effects on impact on cognition, behaviour, and social-emotional functioning during daytime hours. The impact of the intervention on psychosocial outcomes for parents is also being evaluated. The positive response by families wanting to enrol in the RCT underscores the importance of this intervention not only to families raising children with NDDs, but also to stakeholder groups who are helping with recruitment.
Looking towards Cycle III, the team will evaluate the uptake and effectiveness of BNBD-NDD in the real-life context. The goal will be 1,000 parents of children with NDD being given access to BNBD-NDD through three different pathways: (i) direct-to-consumer (i.e., parents/caregivers); (ii) direct to healthcare providers who will “prescribe” the intervention to parents/caregivers; and (iii) through healthcare centres (i.e., provide leaders in pediatric healthcare centres with the opportunity to share this program with their clinical staff who would then share it with parents). This will enable the team to determine which pathway(s) is the most effective in terms of implementation and costs associated with each pathway.
Dino Island is a “serious game” – a computer-based intervention designed to improve attention, short-term memory, and self-regulation (executive functioning) specifically in children with neurodevelopmental disabilities. The gaming format engages and motivates children, who are supported by interventionists teaching them problem solving techniques. Previous studies of Dino Island in children with autism and FASD showed significant gains in attention, memory, self-regulation, emotional and behavioural control, self-efficacy, use of problem-solving strategies, and academic performance. The program is accessible and successful in a wide range of settings – it can be effectively and affordably delivered in school, home, and community settings, and breaks down barriers by allowing remote and/or resource-limited communities to address needs that might otherwise go unmet. With strong industry, school and service partners, the Dino Island team is developing a commercialization plan for moving the intervention into the public domain. The researchers anticipate a strong market for Dino Island, given the scarcity of effective, evidence-based interventions targeting executive functioning – and the prevalence of challenges in this domain among children with neurodevelopmental disabilities.
Looking towards Cycle III, the Dino Island research team will work with a consortium of national and international partners to broaden implementation of the program across Canada and internationally. Dino Island has been accepted as an official partner, and will serve as a national/international showcase project, within the Panacea Gaming Project for how to bring evidence-based neuroscientific interventions to the public. Dino Island has the potential to significantly improve quality of life and outcomes for the hundreds of thousands of children living with neurodevelopmental disabilities world-wide, who experience attention and executive functioning problems.
Social ABCs is a made-in-Canada intervention targeting children three and under showing early signs of autism or social communication delays. Implemented by parents and supported by trained coaches, the intervention focuses on building positive connections between parents and their children, and encourages the development of communication skills through interaction in everyday activities. As a consequence of the intervention, parents are learning the skills to support their children’s development, and are reporting feeling empowered; Toddlers are making gains in their social-communication and play skills, which are expected to lead to improved developmental outcomes, and the possibility of fewer intensive support needs in the future; The project has shifted practice by teaching front-line clinicians a different skill-set for working with toddlers at risk for, or with emerging, neurodevelopmental disabilities. This new skill set can be used in service delivery moving forward.
Looking towards Cycle III, the Social ABCs team will adapt the program (both standard and small-group model) to other regions within and beyond Canada. Training is relatively brief, and the Train-the-Trainer model has been refined to increase capacity to implement the program beyond the current project. A key strategy will be development of an on-line training component which will significantly increase accessibility of the program (e.g., increased access to remote regions).
This community-based, participatory action project is developing and leading the implementation of best practices to support children with neurodevelopmental disabilities and their families across different service landscapes in Canada. Robust teams have been established in three regions (Edmonton, Vancouver and Whitehorse) that include multiple government and community-based partners, and each has established a process to better understand the landscape of services that provide navigational support to children with neurodevelopmental disabilities and their families. Each site has established a core team of leaders and partners dedicated to improving navigation in their jurisdiction, and secured relationships with key partners representing government and not-for-profit organizations across health, social service, and education sectors. This project has provided a catalyst for organizations and sectors to come together in an unprecedented manner to effect system change, break down the silos that have served as a barrier to effective collaboration, and build capacity to mobilize local strengths and resources to address local needs. For example, based on feedback received from families, navigation support at the local level in Vancouver has been transformed for children with neurodevelopmental disabilities who are assessed at a major pediatric health centre. In the Yukon, embedding a navigator in a remote community has increased family trust in, and engagement with, service providers, heightened cross-ministerial collaboration, and resulted in more timely access to services.
Looking towards Cycle III, the Resource team will continue to build capacity within the extensive, and still growing, local networks of partners in each region. Planned health economic analysis will identify potential cost savings to the system (program costs, human capital costs, direct medical costs, indirect medical costs) related to improved navigational pathways. This project will inform the processes of service access and navigation, especially with respect to issues of integration across the systems of care, and other key components that may influence the navigation experiences of families raising children with neurodevelopmental disabilities.