Project Description

Challenge

By involving family members of children with neurodevelopmental disabilities as partners in the research process, we can better address the needs of families. More importantly, research results will have a more significant impact on the target audience.  Many families are eager to get involved in neurodevelopmental research, but don’t necessarily have the experience or know where to start. Similarly, researchers have also expressed that they need more training opportunities to learn how to engage families as partners in research properly. While there are many tools, resources, and websites to increase the knowledge and support for patient and family engagement, there is still a lack of training opportunities. Currently, only a handful of programs exist in Canada (e.g. SPOR Master Class, KT Program Partners in Research Program). As a result, more training opportunities are needed to reach and empower families, researchers, and graduate student trainees.

Project Summary

In 2018, the KBHN Family Engagement team partnered with two parent advisors to develop, implement, and evaluate the Family Engagement in Research Certificate of Completion Course. This 30-hour online course, hosted by McMaster University’s Centre for Continuing Education, brings together researchers and families. Its purpose is to learn about ethics surrounding family engagement in research, their respective roles and responsibilities in the process, and factors that impede or improve collaboration among other topics. Starting in 2018, all KBHN research trainees were encouraged to take the course, as were all family members partnering in KBHN-funded projects. Completion of the course results in a KBHN/CanChild/McMaster University Certificate of Completion.

Result

By the end of the course, FER graduates are i) invested in contributing to and ready to engage in neurodevelopmental research; ii) knowledgeable about family engagement in research, and iii) capable and confident to partner at various stages of the research process. As one parent stated:

“I think that having all this knowledge I can go back and build those ideas of how I’m going to move this forward and it has given me the confidence to be able to be like yes this is something that I want to do in the future, and that I have a lot of tools and resources to build these ideas and engage later.”

Course-administers believe that this work will have broad generalizability to other training initiatives. They also believe that many of the families and researchers will go on to be leaders in the field of family engagement in research and will have a transformative impact on the way childhood disability research is conducted in Canada.

Funding

This project was part of the larger “Family Engagement Core.” The program was funded a total of $163,232 by the Kids Brain Health Network and $77,517 by participating partners.

Team

Principal Investigators

Jan Willem Gorter, McMaster University
Patty Solomon, McMaster University

Principal Post-Graduate Student Investigator

Andrea Cross, McMaster University

Co-Investigators

Dayle McCauley, McMaster University
Connie Putterman, Parent Advisor
Donna Thomson, Parent Advisor

Key Personnel
Rachel Martens, Family Engagement Officer

Kinga Pozniak, Post-Doctoral Fellow, CanChild
Alice Soper, Research Assistant, CanChild
Kajaani Shanmugarajah, Research Assistant, CanChild

Partners

McMaster University’s Centre for Continuing Education
CanChild Centre for Childhood Disability Research