In the summer of 2023, Holland Bloorview launched its seven-year strategic plan, Transformative Care, Inclusive World: Holland Bloorview 2030. The plan imagines our hospital in 2030 where care and services for children, youth and families are agile, socially accountable and transformed by research and education.

Building out this vision and plan would not be possible without the participation of family leaders lending their unique insights throughout the project. Family leaders play a vital role in shaping research, care and education at our hospital.

“From sharing their lived experiences, to providing mentorship and facilitating workshops, family leaders contribute in so many ways as partners in possibility,” says Clara Ho, manager, client and family-centred care and partnerships. “They’re at the heart of everything we do, and their voices, lived experiences and perspectives are woven into the very fabric of the hospital.”

Since forming in 2011, the Family Leadership Program (FLP) has served as a key enabler of client and family-centred care at Holland Bloorview. Since then, over 120 family leaders have volunteered their time and expertise on over 200 initiatives, projects and committees every year, partnering with staff in areas including clinical services, research and education.

“Being passionate about spinal cord injury, I had the opportunity to work with that team,” says Ivona Novak, family leader. “As a family leader interacting with staff and clinicians at Holland Bloorview, your feedback matters for kids and families receiving services here. They have the concept of ‘nothing about me without me’ and I really think they live and breathe that concept.”

Leveraging their experiences navigating the pediatric health care system as a family member, sibling, caregiver or graduated former client, family leaders are partners, co-creators and difference-makers.

For Joanne Maxwell, vice president of experience, transformation and social accountability, the impact of family leaders is reflected in the hospital services they’ve contributed to developing and improving. “As people who work in the health care system, we aren’t necessarily seeing the whole picture, so there is great opportunity in us learning about what it’s like to experience care,” says Maxwell. “We’ve really embraced co-design in ways that most organizations talk about trying to do. We bring them in early and make decisions with clients and families.”

Family leaders also help other caregivers by providing one-to-one peer support as family mentors and building community in a virtual family support network. By sharing the experiences and stories of the client families with staff, students and other families, family mentors are able to promote compassionate approaches to care delivery and learning across the hospital that are aligned with the specific needs of clients.

In turn, Holland Bloorview has committed to supporting family leaders through a first-of-its-kind training program in Canada, empowering them with skills in teaching and facilitation in educational settings. Graduates of this program become “family as faculty” who co-create and co-teach transformational learning experiences for students, staff and families.

To learn more about the FLP and family leaders, please watch the video below.

Share your experience, make a difference and sign up to become a family leader today! Visit our webpage to learn more.