Research4Families
Research with Families for Families
Research4Families Program
Research4Families Program supports all members of our community in creating meaningful family engagement in research.
We are part of BCI4Kids and the Calgary Pediatric Stroke Program (CPSP), which are world-leading clinical research programs in pediatric neurology, based at the Alberta Children’s Hospital in Calgary, Alberta. These programs strive to provide children with severe neurological conditions access to innovative technology and therapeutic interventions to achieve greater independence and quality of life. Children and their families are at the core of our programs, and play a crucial role in all aspects of project design, implementation, and knowledge mobilization.
Research4Families community includes:
- Children, Youth & Families with lived experience of CP and/or experience using BCI technology.
- Researchers & trainees who are part of the BCI4Kids and CPSP Research Programs.
- Clinicians who are involved in the BCI4Kids and CPSP research or clinical programs.
Child and family centered research. Children and their families are at the core of our program, and we are committed to promoting and supporting their active participation to ensure that research reflects their interests, needs, and goals.
Supportive environment. We commit to a diverse, unique environment that is flexible to accommodate participant’s needs, enabling everyone to thrive.
Collaboration. We work together as a unit, building on everyone’s experience and expertise to achieve common goals through solution-oriented thinking.
Trust. We act in a way that is honest and transparent, so that others know they can rely on us.
Respect. We treat each other in a way that shows we care for one another and value each person’s opinions, experiences, and expertise.
Family engagement in research means that research teams partner with families as active collaborators throughout the research process, not just as study participants. Families share their insight and lived experience to help shape research questions, design studies, and interpret and share findings. This approach is built on respect and the idea that people whose lives are touched by research should have a voice in how it's done.
When researchers and families work together as partners, studies become more relevant to real-world needs, findings are more actionable, and research has a greater chance of making a positive difference in families' lives. Family engagement transforms research from something done to families, into something created with them.
Email Kristina & Dejana at: cpsp.bci4kids@ucalgary.ca
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Kristina McGuire, Co-lead, Family Engagement Research Specialist
As a Family Engagement Specialist I connect families, clinicians, and researchers, so that lived experience continues to shape how we design studies, communicate, and support the children and families involved in our work. I support community partners as they grow their confidence and skills in research. I work closely with our teams to strengthen engagement practices, and I’m always here for any questions, ideas, or concerns.
My background is in pediatric nursing and family advocacy through Heart Beats Children’s Society, as well as advisory councils at Alberta Children’s and Stollery Children’s Hospitals. I live in Airdrie with my husband Drew, and our two kids, who keep me humble, caffeinated, and motivated to help create systems that work better for families like ours.
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Dejana Nikitovic, Co-lead, Research Coordinator
As a Research Coordinator, I support families, researchers, trainees, and clinicians interested in learning about family engagement in research to build their knowledge, confidence, skills. I work closely with teams to strengthen inclusive and practical research practices. I’m passionate about applied research that leads to better treatments, services, and quality of life for children and families — and I believe this kind of meaningful research is only possible when families are true partners in the process.
Resources for Family Partners and Researchers
PARTNERING WITH RESEARCH TEAMS AND PROJECTS:
- Perinatal Brain Journeys Lab's Patient & Family Advisory Council
- Who: Children, youth and families with lived experience of perinatal brain injury (a fetal diagnosis, cerebral palsy, HIE or other perinatal brain injuries)
- What: Join the Patient and Family Advisory Council to help shape research that reflects the needs and experiences of children and families affected by perinatal brain injury.
- When: Council will meet monthly for approximately 1 hour (possible additional meetings through the year).
- Interested: Email Dr. Mary Dunbar at pblab@ucalgary.ca
OTHER ENGAGEMENT OPPORTUNITIES:
- Join BCI Game Jam 2026, and help developers create games that use brain-computer interface (BCI) technology to make games more fun, accessible, and meaningful for everyone.
- Who: Families, children and youth with different abilities. Previous BCI experience is welcomed but not needed.
- When: February 27th-March 7th, 2026
- Where: Join virtually or in person at University of Calgary.
- Interested: Find more details HERE, or email: contact@bci.games
COURSES (Courses marked with a $ require payment. Email our team at cpsp.bci4kids@ucalgary.ca to learn about available financial support):
- PORCCH modules (family partners & researchers) - short online modules that introduce family engagement in research. Also introduces family partners to research.
- The Family Engagement in Research Course (family partners & researchers) - $ - 10- week online course, that introduces principles and frameworks of family engagement in research. Family partners and researchers learn and work together in small groups.
- The Family Engagement in Research Leadership Academy (family partners & researchers) - $ - 10 week advanced online course.
Patient Engagement in Patient-Oriented Research Certificate (researchers) - $ - 10 week course organized by AbSPORU, that introduces key concepts, methods, and strategies for engaging family partners.
JOURNAL CLUBS:
- Monthly AbSPORU Virtual Patient Engagement Journal Club - meets online to discuss recent publications about family engagement in research. Click HERE to subscribe to their mailing list.
- CIHR’s Team Grant: Healthy Youth funds youth-engaged, multi-disciplinary research teams in Canada to improve youth health and well-being (up to $1.5M over 5 years); Registration deadline April 28, 2026 and Application deadline June 16, 2026.
What's Happening
BCI Game Jam 2026
Join developers from February 27th to March 7th, 2026 to collaborate on designing BCI games. Interested in serving as a judge, please let us know by March 6th.
Interested: Find more details HERE or email contact@bci.games
AbSPORU Journal Club
When: Tuesday, March 17th, 2026 12-1pm MT, Zoom
Who: Anyone interested in family engagement.
Paper discussed: Developing the Understanding Palliative Care Module: A Quality Improvement Initiative Incorporating Public, Patient, and Family Caregiver Perspectives
Interested: Register HERE
Language Does Matter: How We Communicate Our Findings
When: Tuesday, March 17th, 2026, 12-1 pm MT, Zoom
Join Rachel Martens and Dr. Carly McMorris to explore how language functions not only as description, but as power. Using neurodiversity-affirming language, Rachel and Carly will explore: how linguistic framing in research influences public perception, policy conversations, and community trust; the history of disability self-advocacy and how it has reshaped expectations of researchers; particularly around ways that people with lived experience should be represented in scientific literature.
Interested: Register HERE
People&Partnerships: Powering the Future of Health Research
2026 NorthWest SPOR Collaborative Forum - Annual Conference on Patient-Oriented Research Hosted by AbSPORU
- Who: Patients and caregivers, researchers, students, clinicians, health-system professionals, policymakers, and more.
- When: Tuesday, May 12 – Wednesday, May 13, 2026
- Where: Chateau Lacombe hotel | 10111 Bellamy Hill Rd NW, Edmonton, AB T5J 1N7
- Interested: Check the AbSPORU website for more information
Stay Connected
Whether you’re interested in joining our community, learning more about family engagement, exploring collaboration opportunities, or simply starting a conversation — we’d love to hear from you. Reach out anytime to chat about how we can work together to make research more meaningful and inclusive.
What to hear about engagement opportunities, upcoming eventsm training sessions, and program updates? Sign up for the quarterly Research4Families Newsletter, and be the first to know what's happening in our community. Whether you're a family partner, researcher, trainee, or clinician, our newsletter keeps you informed, inspired, and connected.
Your voice matters to us. If you have ideas, suggestions, or reflections you’d like to share, we invite you to leave anonymous feedback. Your input helps us grow, strengthen our partnerships, and make our community more meaningful, inclusive, and responsive. We’re always learning — and your perspective helps guide the way.