Project Description
Challenge
Many families of children with neurodevelopmental disabilities (NDDs) don’t want to be just passive research subjects; instead, they want to be active research partners. A project tends to have greater relevance when it arises directly from the needs and priorities of families rather than solely the interests of researchers or their funders. Despite this, scientists and families have relatively few chances to connect.
Project Summary
In 2014, NeuroDevNet (now Kids Brain Health Network; KBHN) helped to launch the Parents Partnering in Research (PPR) Facebook group, a powerful novel online community that brings together families and researchers. This private Facebook group provides opportunities to exchange knowledge/resources, discuss issues of importance to families, and engage in research. In 2017, KBHN’s leadership strongly encouraged its investigators to involve families when formulating their research questions for the next round of funding applications. The goal was to design projects that would have a direct and concrete impact on the lives of children with NDDs. The network turned to the Family Engagement team to broker relationships between researchers and family stakeholders and to provide family engagement support and mentorship throughout the grant process. The Family Engagement team developed a variety of family engagement tools/resources to support projects with family engagement at the grant-writing phase and offered three core services (i.e., matching program, mentorship program, and family engagement planning support).
Result
The network’s Family Engagement team turned to the PPR community to find parents who’d be interested in partnering on research projects. In total, nine families were matched to five research teams, and an additional six research teams received family engagement planning support. Overall, researchers found the family engagement services to be helpful and became more comfortable with family engagement throughout the grant writing process. Researchers also commented on how valuable it was to have family input from the beginning of the research process. “The family stakeholders helped design the grant, especially there is a part of the grant about how to approach parents for research, and the family stakeholder’s help was invaluable.” To date, the online PPR community of parents and researchers has grown to 236 members from across Canada and internationally. Parents have reported a sense of belonging and community in the PPR group. Many have gotten involved in KBHN research activities, such as attending and presenting at KBHN conferences and completing the Family Engagement in Research Certificate of Completion Program.
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
Dayle McCauley, McMaster University
Key Personnel
Andrea Cross, Graduate Student, Family Engagement Coordinator, McMaster University
Julia Hanes, Research Assistant, CanChild
Jennifer Sprung, PPR Moderator
Rachel Martens, PPR Moderator
