Kids with chronic illnesses told a researcher for a Calgary pediatric study that they want to play a bigger role in their own treatment, including learning how to talk to doctors themselves.

The study at the Alberta Children's Hospital found that many sick kids said they felt their voices weren't being heard.

'That didn't feel that good because the doctors were kind of leaving me out.'

— Ethan Cameron, 12Ethan Cameron, 12, has hemophilia and wasn't pleased with getting information second-hand from his parents.

"At the start they just talked to the doctor and later, when we were at home, they told me. That didn't feel that good because the doctors were kind of leaving me out," he said on Tuesday.

Andrea Pritchard, a graduate student at the University of Calgary and a nursing instructor at Mount Royal College, interviewed children aged seven to 11, including Cameron, as part of her study.

"What these children are saying is that it's not that they would be making the decision alone. But it's showing them and role-modeling for them and inviting them to have a voice at the table because it is their body," she said.

The children who took part in the study suggested three ways to help include them in discussions about their care:

A treasure map to lead them through what's going on.
An online game to guide them through making choices.
Workshops to teach kids and doctors how to speak to each other.
Pritchard said it's important for children with chronic diseases to learn to how to manage their illness before they're adults.

"So how do we then start them at an early age, to be part of that team, to be part of the decision making, to recognize what their own best interests are, to work with their parents, work with their health-care team, their teachers, their friends, in terms of making good decisions, but not by themselves?"