Kids Brain Health Network: Identifying and Prioritizing Stakeholder Needs in Neurodevelopmental Conditions in Canada

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In 2016, Kids Brain Health Network conducted an environmental scan of the community of individuals dedicated to managing neurodevelopmental conditions such as CP, FASD, and ASD. 

This report presents the results of the detailed scan, for the purpose of identifying the needs of stakeholders in neurodevelopmental disorders. Potential uses of this stakeholder engagement activity include

i) to inform research priorities of Kids Brain Health Network (KBHN) 2018-2020;

ii) to inform priorities for the strategic planning cycle for KBHN 2020-2025; and,

iii) to inform decision-making regarding policies, programs and services offered, service delivery methods and approaches, and other activities of organizations external to KBHN that similarly have a focus on improving quality of life for individuals and families affected by neurodevelopmental conditions such as cerebral palsy (CP), fetal alcohol spectrum disorders (FASD) and/or autism spectrum disorders (ASD).

In other words, how can KBHN and other like-minded organizations and governments work towards maximizing quality of life through their activities toward facilitating more empowering policies, programs and services across Canada?

These needs of neurodevelopmental stakeholders were obtained from the perspectives of parents directly (based on their personal experiences), clinicians and other frontline workers who serve families (based on what they’ve heard and observed are the needs of families), as well as policymakers (based on what they’ve heard from stakeholders through consultation exercises, and/or personal interaction with families).

Click to download FULL REPORT


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