Changing Your Lens: website focuses on general needs of families with medically complex children

OTTAWA — It started as an idea from families of children and youth with complex medical needs. It became a program in Ottawa — co-designed and co-led by parents, and run by CHEO and Pinecrest-Queensway Community Health Centre — to help these families cope with the unique non-medical challenges of their lives, including parent-to-parent support. Now it’s evolved into ChangingYourLens.ca, a website launched today to help care providers and organizations better support and understand families caring for medically complex children.

“Families of children with complex medical needs face tremendous social, emotional and economic stresses,” said Chantal Krantz, manager of Connected Care at CHEO. “It’s unfathomable for most people just how taxing it is. The many specialists. The extraordinary costs. Being on call 24/7. Saving your child’s life again and again. Coordinating services in a fragmented system. Keeping things as normal as possible for the whole family. Just to name a very few.”

ChangingYourLens.ca has five sections, meant for employers, care providers and organizations to help address the needs of these families. The sections include quick guides, resources such as documentaries about family experiences, and an inventory of practical information drawn from hospitals, governments and pediatric centres across the country. Four of the sections are organized around major life challenges for families of medically complex children and youth:

• Supporting emotional and physical health for parents
• Financial and employment
• Reducing social isolation
• Respite for parents
• Build your program 

“ChangingYourLens.ca is an excellent example of the importance of listening to parents, and working in partnership with them and other care organizations,” said Alex Munter, CHEO’s president and CEO. “The health-care system has to make it easier, faster and better for families. Kids have unique health-care challenges, especially those with complex needs, so today’s announcement is definitely a step in the right direction.”

The ChangingYourLens.ca website is produced by CHEO and the Pinecrest-Queensway Community Health Centre (PQCHC), with support from Children's Healthcare Canada and many contributors from across Canada. It was funded in part by the Government of Canada's Children and Families Component of its Social Development Partnerships Program. Please consider supporting families, including those with medically complex children and youth, by giving to the CHEO Foundation.

Partner quotations

"Pinecrest-Queesway Community Health Centre is proud to be working with CHEO on this innovative initiative. Hosting the peer-to-peer component of the Navigator Program within the community has helped families bridge community supports with CHEO-based supports to provide a comprehensive suite of resources .The benefit of providing supports where people live and by peers who ‘get it’ has proven to be extremely effective in increasing parent engagement. We are excited to share our knowledge and experience with the sector."

—Michele Hynes, Children and Family Services Director, PQCHC

"Children with medical complexity and chronic health issues have long been a priority population for Children’s Healthcare Canada and our members. Helping their families live their best lives as well has become increasingly important. The emotional, physical, financial and social strains can negatively impact the health and well-being of family and caregivers.  We are proud to support Changing Your Lens website."

—Emily Gruenwoldt, President and CEO, Children's Healthcare Canada

“Our health-care system is becoming more and more complex and, in pediatrics, families play an incredibly important role — navigating the system, ensuring coordinated care, and communicating between health-care teams. For medically complex families this role is exponential. We are not just moms and dads, we are medical parents. Our connection with the health-care system is complex and often lifelong. We are heavily impacted by caring for our children. We have knowledge about them and their conditions that most doctors do not have. We manage hundreds of interactions with health-care providers in the hospital, the community, at school and at home. We often live with trauma from repeated interactions with our children and the interventions they go through. Changing Your Lens is about hearing our stories, learning from our lived experience, and recognizing that medically complex children and families have unique needs. Change Your Lens is about starting a conversation, informing programs and care that will work for our families, and ensuring that we are not left behind in a complex healthcare system.”   

—Julie Drury, Medical Mom

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About Pinecrest-Queensway Community Health Centre

Pinecrest-Queensway Community Health Centre (PQCHC) is a large multi-service community hub that provides a range of services for children, youth and adults living in the west end of Ottawa. Since its establishment in 1979, PQCHC has grown alongside the community it serves, widening its array of services to address broader social determinants of health such as access to primary health care services, employment, housing, education, building community capacity, health promotion, mental health and programs for children and youth. PQCHC is the largest CHC in Ontario.