family support

Challenge Whereas children and families affected by neurodevelopmental disorders have needs, scientists have research questions. Kids Brain Health Network’s Knowledge-Translation (KT) Core builds bridges between the two so that research can make a real difference for those it intends to serve. Project Summary and Results In 2016, the KT core conducted 32 one-on-one interviews with [...]

Challenge Persons in research institutions, hospitals and governments make decisions every day that affect the well-being of children with neurodevelopmental disabilities (NDDs). The KBHN Neuroethics Core sought to find ways to help doctors, scientists, policymakers and parents with their ethical decision-making. Project Summary and The neuroethics core at Kids Brain Health Network helped people navigate [...]

Challenge By involving family members of children with neurodevelopmental disabilities as partners in the research process, we can better address the needs of families. More importantly, research results will have a more significant impact on the target audience.  Many families are eager to get involved in neurodevelopmental research, but don't necessarily have the experience or [...]

Challenge While there has been a great deal of research into causes and potential therapies for children with neurodisability, there has been a significant lack of support for children and their families as they grow and develop. Therefore, researchers created “Support Matters!” to understand these needs better. Project Summary Researchers conducted individual and focus group [...]

Challenge There is a lot of academic writing on the challenges faced by children and youth with Autism Spectrum Disorder (ASD), however, much of what’s known is based on parent report or researchers’ observations. We know very little about the lived experiences of youth with ASD, from their own perspectives. ‘Giving voice’ (including to those [...]

Challenge The Canadian Cerebral Palsy Registry initially launched in 2003 as a platform to store data from people diagnosed with cerebral palsy (CP). It has since expanded to include more than 2,250 participants with the disorder and has resulted in more than 35 academic publications. The next phase of the project is looking to expand [...]

Challenge In Canada, there have been poor outcomes for children with a neurodevelopmental disorder (NDD), with educational achievement and employment outcomes being the lowest of all existing disability groups. This outcome is a result of the unmet needs by services for children with a neurodevelopmental disorder and their families. Describing these needs for children with [...]

Challenge It can be challenging for children with disabilities to participate in leisure activities such as summer camps and art classes. Parents often struggle to find programs that are close to where they live, accessible, suitable for their needs and abilities, and in line with their interests. Project Summary The Jooay App (jooay.com) was officially [...]

Challenge More than 80,000 Canadians are living with Cerebral Palsy (CP). Yet, families often feel isolated and are unsure how to find services or where to access the most up-to-date CP-related information. Project Summary The Cerebral Palsy Canada Network (CPCanNet) was created to connect families to information through CP Associations across Canada, by acting as [...]

Challenge While cerebral palsy (CP) researchers continue to make meaningful scientific discoveries, there have been barriers to communicating those findings to other scientists, clinicians, families and the public. Project Summary The Cerebral Palsy Demonstration Project has been helping to address this issue with the Knowledge Translation and Exchange (KT) Strategy. The KT team has worked [...]