Identifying and Prioritizing Stakeholder Needs in Neurodevelopmental Conditions in Canada

This is a guest post submitted by Anneliese Poetz, PhD, Manager, Knowledge Translation (KT) Core, Kids Brain Health Network (formerly NeuroDevNet).

During 2016, Kids Brain Health Network conducted an environmental scan including one-on- one interviews with parents, policymakers, and frontline workers/clinicians to learn more about their needs concerning the management of neurodevelopmental conditions such as CP, FASD and ASD. The result was the identification of 44 stakeholder needs (report available online: http://bit.ly/StakeholderNeedsReportKBHN). We would like to ask for stakeholders’ help to prioritize which of these should be addressed first.

We created a survey containing the 44 needs identified by stakeholders. We held an in-person stakeholder event in Vancouver this past January 18, 2017 and gave each attendee 14 stickers (dots) to use to vote. We are extending this opportunity in electronic format (via this survey) to stakeholders across Canada. In response to stakeholder feedback we have also opened this survey beyond parents, policymakers and frontline workers to include youth affected by these neurodevelopmental conditions.

The survey may be found at the following link (English version): https://neurodevnet.med.ualberta.ca/surveys/?s=7CEXMTKJ7J

French version: https://neurodevnet.med.ualberta.ca/surveys/?s=E4JFAF7AJW

We have received ethics approval, and we will close data collection August 30, 2017. The results of the survey will be used to inform research and knowledge translation priorities for Kids Brain Health Network over the next several years, and will be aggregated into an addendum to the environmental scan report and shared publicly via KBHN slideshare.