Family engagement in child health

Building Partnerships research needed. that Impact Communities 2019 ANNUAL CONFERENCE Kirsti Mardell1, Crystal Shannon1,2 1Kids Brain Health Network; 2University of British Columbia, Okanagan Background

• Family engagement in research is needed in order to bring communities such as parents of children living with neurodevelopmental disabilities a Research Partners collaborative voice. • Researchers and families may have different reasons for wanting to participate in pediatric research; however, their goals may still align when the commitment to foster better outcomes and positive change for child health is present. • The authors formed a researcher- Crystal Shannon & Kirsti Mardell family partnership during the first cohort of the Family Engagement in Research (FER) Certificate of Dissemination Completion, sponsored by Kids Brain • The infographic is user-friendly and Health Network in partnership with can be widely distributed to a variety CanChild and McMaster University. of stakeholders using several • Together, Kirsti and Crystal, developed platforms including: facebook groups a knowledge translation (KT) tool in and organizations or can be posted on the form of an infographic to related websites including the Kids heighten awareness of the Brain Health Network. importance of integrated research teams. Next Steps Aim • Kirsti continues her mission to advocate for more supports and • The aim of the infographic is to services for families and children illustrate the importance of family living with neurodevelopmental engagement in research for child differences to benefit her rural health in a visually appealing manner community, the Regional Municipality that can be easily understood and of Wood Buffalo in Alberta where disseminated. resources are lacking. She continues to engage with health research whenever opportunities arise. Methods • Crystal is enrolled in the Interdisciplinary Graduate Studies • The authors met online during the program: Community Engagement, FER course designed for graduate Social Change, and Equity theme at students and family members who UBC Okanagan in Kelowna, British share a joint interest for Columbia where she continues to neurodevelopmental research. engage families and community • Kirsti and Crystal decided on an partners in child health research. Her infographic as their project because doctoral pursuits are focused on the they felt it would be a feasible project development and implementation of to complete within the course’s an online parent support intervention allotted timeframe. to help promote safe and active • Strategies included consistent, recreation for children living with flexible communication via various autism spectrum disorders. methods including telephone calls, FaceTime, and email was required to create the KT tool. Lessons Learned • Mutual respect, commitment, and • Upon completion of the FER project, constant feedback and the authors reflected upon their acknowledgement were essential. collaborative process determining the • Strength-based division of tasks was following four recommendations: key to the success of the project 1) Constant communication needed based on the partners’ academic and throughout the entire project parental lived experiences. 2) Flexibility necessary 3) Establish short-term & long-term goals 4) Equal partnership from start to finish