What are some of the ways the KT Core is supporting “family engagement” in research?

by Anneliese Poetz, KT Manager, NeuroDevNet

Diverse stakeholders participate in CanChild's 25th anniversary Family Engagement Day

Diverse stakeholders participate in CanChild’s 25th anniversary Family Engagement Day

On November 22nd, 2014 CanChild celebrated its 25th anniversary with a day-long stakeholder meeting located in the student centre at McMaster University in Hamilton, Ontario. There were 65 professionals, 69 family members (adults) and 33 children/youth.  NeuroDevNet’s KT Core was invited to participate by attending the event and staffing a NeuroDevNet booth. CanChild is part of NeuroDevNet’s Community for Brain Development and NeuroDevNet was one of the sponsors of this event.

 

Director of CanChild, Dr. Jan Willem Gorter says:

“It is only through true partnership and engagement of children, youth and families, health care providers, and anyone else in the lives  of children with disabilities that we can make meaningful progress in the field of neurodevelopmental disabilities.  NeuroDevNet sponsored the live streaming of the event with a world-wide reach. The day has been recorded and will posted on the CanChild website.”

During the event, participants contributed to inform research by posting thoughts and ideas on large pink sticky notes on the wall, active discussion in small break out groups, and finally a large report-back discussion.

Stakeholders had the opportunity to share ideas about how to improve family engagement in research

Stakeholders had the opportunity to share ideas about how to improve family engagement in research

Anneliese Poetz, Isaac Coplan NeuroDevNet's KT Core participate in CanChild's Family Engagement Day

Anneliese Poetz, Isaac Coplan NeuroDevNet’s KT Core participate in CanChild’s Family Engagement Day

The small break out groups each had a focus question based on some aspect of research or knowledge translation and a graduate student volunteer note-taker who recorded the main points of the discussion.

Afterwards, participants were treated to a live-band performance by Justin Hines (vocals) and Ash & Bloom (guitar and backup vocals).

Poster Session set up near booth displays

Poster Session set up near booth displays

Isaac Coplan engaging with stakeholders at NeuroDevNet booth

Isaac Coplan engaging with stakeholders at NeuroDevNet booth

Finally, the poster- and booth-display session ended the day.  Isaac Coplan and Anneliese Poetz were visited by approximately 25 parents, practitioners and self-advocates at the NeuroDevNet booth.

 

 

Visitors to the NeuroDevNet booth scan QR code to retrieve .pdf of ResearchSnapshot

Visitors to the NeuroDevNet booth scan QR code to retrieve .pdf of ResearchSnapshot

The ResearchSnapshots were popular, and the laminated copies we brought for the booth included a QR code that linked to the original .pdf online as well as a bitly link that takes you to the webpage containing all the ResearchSnapshots in a particular category (such as CP, ASD, etc.). One visitor to the booth said that if she had had a ResearchSnapshot of the peer-reviewed papers she had to read in her college program called “Autism and Behavioural Science” it would have motivated her to read the entire 30 page paper that the ResearchSnapshot was based on. Others said it was great to see just the important information about current research. One person who stopped by the booth said she was a psychiatrist and would bring some NeuroDevNet brains (stamped with the NeuroDevNet website url) back to her class that she teaches at her university’s medical school.

We got some good ideas for engaging families in research from a participant from Bloorview, such as the suggestion that we should consider having a section on our website listing all current NeuroDevNet studies the way Bloorview does on its “Participate in Research” tab. Overall, the booth was successful at raising awareness among current and future practitioners about NeuroDevNet and its research.

The KT Core also coordinated and facilitated a tweetchat in collaboration with CanChild on November 18th, 2014 as a way to generate online family engagement prior to the in-person event. There were 17 participants, 268 tweets and 71,894 impressions (possible reach based on size of networks of tweetchat participants).  Some participants were parents and we had some good discussion about family engagement in research.

Questions for the 1-hour tweetchat included:

1) What does it mean to families to be ‘engaged’ in research?

2) How can we (researchers) do a better job of engaging families?

3) What strategies would you recommend to engage youth in research?

4) What supports/platforms/methods can facilitate family or youth engagement?

5) How does one measure the impact of family engagement?

6) What are your experiences of being engaged (or engaging) in research?

The entire transcript is available online as well as additional statistics.

The KT Core can set up and staff a NeuroDevNet booth at your KT event, and can help you set up and facilitate a tweetchat for stakeholder engagement to obtain input/feedback on your research. If you’d like to know more about how we can help you, contact the KT Core.

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