The Kids Brain Health Network 2017 Stakeholder Survey

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. The result was the identification of 44 stakeholder priorities, which help guide our resource and funding allocations. This summer, we are revisiting the topic with a broadened scope of consideration.

Our initial study included one-on-one interviews with parents, policymakers, and frontline workers and clinicians, to learn more about their needs and challenges with respect to life with a neurodevelopmental condition. To follow this up, we invited stakeholders to a discussion event in Vancouver on January 18, 2017, where attendees voted (using 14 stickers) on what they believed were the primary needs of the community to help us guide our research and knowledge translation activities.

In response to stakeholder feedback, we wish to open this dialogue further. We obtained ethics approval for a survey version of the voting exercise (where you can vote using 14 “virtual stickers”) that we did at the in-person event. Kids Brain Health Network has launched an online survey open not only to parents, policymakers, and caregivers, but further to anyone whose life has been affected either directly or indirectly by ASD, FASD, and CP.

We would like to ask you to please take 10 minutes to participate, and share with your networks across Canada using the following links:

English version of survey
French version of survey

When you first open the survey link you will see the informed consent form that provides more information, such as the risks and benefits of participation. This is followed by instructions for how to participate in the survey. By participating, you are indicating your consent.

You have the opportunity to participate until October 31, 2017.

Results will be published as a separate document, and will supplement to our initial environmental scan. We will use your feedback to inform the research and knowledge translation activities of Kids Brain Health Network over the next several years.

The final report is available here.