Making a difference to families caring for children with neurodevelopmental disorders (NDD)

Project Description

Challenge

For families of children with neurodevelopmental disabilities (NDD), significant barriers exist in accessing trusted sources of new and existing knowledge, and in the lack of opportunities available to share their experiences. By participating in research, families and youth can help address these issues, impact change and be empowered.

Jan Willem Gorter and Dayle McCauley with CanChild Centre for Childhood Disability Research sought to address these challenges through the Stakeholder Engagement project.

Project Summary

The first aspect of the project was the establishment of an Online Family Community where families could connect with other families and engage with researchers, clinicians and policymakers.

Using the Parents Partnering in Research  Facebook co-created by CanChild researchers and families page, parents, family members and youth with NDD across Canada were able to interact with researchers and participate in ongoing online discussions about their needs and gaps in existing knowledge. A Social Media/Online Community Coordinator supports families to make the first step / get started (onboarding), moderate the discussion forum, answer families’ questions, and provide resources.

The second aspect of the project was hosting two facilitated in-person Family Engagement Days. The events were held at McMaster University in the Fall 2014 and Spring 2016 and featured family and youth panel discussions, roundtables on hot topics, entertainment, poster sessions and networking opportunities.  The event was broadcast worldwide via live stream and social media.

Result

These projects helped to set the groundwork for the Family Engagement program in Cycle II and raised its profile as a Canadian Network of Centres of Excellence (NCE). It also brought together family engagement initiatives already underway and set the stage for developing a national research and knowledge mobilization plan.  In light of Family Engagement, an open-access article was written and published in true partnership with researchers and family members on the process of developing the Family-Research online community.

Team

Investigators

Jan Willem Gorter, CanChild Centre for Childhood Disability Research
Dayle McCauley, CanChild Centre for Childhood Disability Research