Call for participation: Parents of children and youth with medical complexity - Understanding the the health service gaps in Canada

As parents of children and youth with medical complexity, no one knows your child and family’s care needs better than you. And yet 49% of parents like you report that their child has unmet needs and 33% report difficulty accessing care (Kuo et al., 2011) . How can we align health services to the real needs of families?

CAPHC is collaborating with content experts, medicine, allied health and families from across Canada, reaching out to parents of children and youth with medical complexity to start answering the big question: What resources and services do you and your child NEED? 

We need parents to participate in convenient, two hour, web-based group discussions to help us better understand, for example: How do you interact with the healthcare system? What influences your experiences with healthcare and health outcomes for your child? Your input will be integral in the development of a questionnaire to assess parental needs for health resources and services for children with medical complexity. In the second phase, this questionnaire will be tested and adapted. 

If you are interested and you would like to share your story, you are eligible to participate if you have a child with medical complexity. What exactly do we mean by children/youth with complex medical needs? Good question! We mean a child who meets all of the following:

  •   … has substantial needs for health care services such as medical care, specialized therapy, and educational needs;
  •  … has one or more severe chronic conditions;
  •  …has a health condition that affects how they function in life, often requiring technological assistance (for example a feeding tube, a wheelchair, or a tracheostomy tube);
  • …requires high use of health resources, including frequent and prolonged hospitalization, multiple surgeries, or the ongoing involvement of multiple subspeciality services and providers.

Understanding the priority needs of parents who have a child with medical complexity will help identify gaps in resource allocation. The information collected by this survey will guide decision-making for clinicians, health administrators and policy-makers. Further, the findings will directly inform the development of practice guidelines for the management of children with medical complexity across Canada. 

To learn more about this project or to put your name on the recruitment list, send us an email at:

*Parents may participate in one group discussion only.

Ann Watkins2 Comments