Tips and Strategies
What does it mean for you as a parent/caregiver to participate in research?
- You can help researchers decide what topics are important to study
- You can help researchers determine what questions they should be asking
- You will learn more about the issues that impact you and your child
- You will learn new skills while being a part of the research process
- You have the opportunity to help other parents and families who are on the same journey as you and your child
Things to ask if you are thinking about getting involved in a research study:
What will be my role/responsibilities?
This depends on the project and your interest and skills. For example, you may be asked to spread the word around your networks about the study and help recruit partners. Always discuss your role with the research team before you commit to participating.
How much time will I need to commit?
This will depend on the project and your specific role. It can vary from as little as a few hours to several months of regular meetings.
Will I get paid for participating?
Many research projects offer small compensation for parents’ time or to cover expenses like travel costs or childcare. This can vary depending on the research project, so ensure you discuss this with the research team ahead of time.
What if I get involved but later change my mind?
You can always change your mind and stop participating at any time. You do not have to explain to the research team why you are deciding to leave the project.
How can families get involved in child health research?
The following resources and tools were developed through the Kids Brain Health Network (KBHN), CanChild and McMaster University 10-week Course Certificate on Family Engagement in Research. If you are interested in learning more about this course, please click here or visit out Training page.
The following infographic was developed by Kinga Pozniak (parent) and Perri Tutelman (research trainee). This infographic provides information to parents and family members who are interested in getting involved in child health research or who are already involved and might have some more questions about the process.
Still unsure about getting involved in research? Listen to a parent’s experience about participating in research!
The following video - Day in the Life of Parent Researcher: An Interview, was developed by Danijela Grahovac (parent), Vivian Lee (research trainee) and Sara Izadi-Najafabadi (research trainee). This is a video interview with Danijela Grahovac, a parent researcher with CanChild and mother to a teenager with Cerebal Palsy. This interview provides real-life examples and information about Danijela’s experiences as a parent researcher and why and how other parents can consider becoming engaged in child health research.
Strategies to Engage in Research: Parents & Researchers
The following resource was developed by Linda Nguyen (research trainee), Samantha Bellefeuille (family member), and Lara Eid (research trainee). This infographic provides tips and strategies to enhance engagement throughout the research process from both the parent and researcher perspective and how to better develop and sustain the family-researcher partnership.
The following resource was developed by Samantha Micsinszki (research trainee) and Alifa Khan (parent). This resource provides information for families and researchers on how to have solution-focused conversations in research partnerships. This tool is intended to provide strength-based, solution-focused prompts to frame conversations and to be used as a guide for families and researchers throughout the research process.
The following infographic by Francine Buchanan (parent & research trainee) and Ayesha Siddiqua (research trainee) provides a quick reference guide to authentic partnership in research, highlighting principles, values, and best practice. The authors developed the acronym ‘IMPACT’ to summarize principles and values including Inclusivity, Mutual respect, Partnership, Accountability, Co-learning, and Transparency.
The following infographic developed by Crystal Shannon (research trainee) and Kirsti Mardell (parent) describes the need for family engagement in child health research. The infographic provides a definition of family engagement in research and outlines the reasons researchers should engage with families and the benefits for families.
The following infographic was developed by Sharon Gabison (parent) and Malvina Skorska (research trainee). This infographic provides a visual pathway for researchers to showcase the process of engaging patients, families, caregivers and/or community members (PFCC) as partners throughout each stage of the research process. The authors also developed a complementary checklist and planning guide to be used in collaboration with this infographic to optimize knowledge uptake and understanding of how to establish a research partnership throughout each stage of the research process.