Chronically ill children want to be included in decision-making about their disease, which will allow them to better manage their illness into adulthood, new Canadian research says.

A small study of eight children who had either hemophilia or another chronic disease found that children feel marginalized within their own health-care management team.

According to researcher Andrea Pritchard, an instructor in the school of nursing at Calgary's Mount Royal College [1], children want to feel that they have a voice when making decisions about their care.

They also want to have the knowledge and tools to be able to care for themselves when they are adults.

"School-age children want to learn how to work with their adult caregivers so that they can develop competence in caring for their own best interests," said Pritchard . "They want to learn how to make good decisions as they grow up so that by the time they are adults, they have some skills for self-care and health teamwork."

During her interviews with the children, Pritchard said the children felt they were not always acknowledged by their caregivers, a team that includes parents, extended family, teachers, friends and health-care workers.

The children identified seven key areas that would help define their roles within their health-care team:

• Each team member should work in the best interest of the child.
• Everyone on the health-care team must be trustworthy, respected and doing their best work. 
• Adults and children must learn to communicate with one another, including taking turns speaking and listening. 
• Children must be involved and feel like they are part of the process. 
• Kids should know about the important issues regarding their care, even if those issues may be frightening to them. 
• Kids must be a part of decision-making processes and be informed about the roles various caregivers play in their health care. 
• Everyone must work together.
  

Pritchard said her findings, which are part of her PhD dissertation at the University of Calgary, can only serve to help health-care workers treat kids.

"I wish that I would have known this 20 years ago," Pritchard, a nurse with more than 20 years experience, said.

The kids themselves had their own recommendations for how to better include them in their own care:

• The children produced a "treasure map" drawing to illustrate their partnership role in their own care.
• They are calling for an interactive workshop that would teach adults and children how to communicate with one another. 
• They believe an online game in which every member of their health-care team has a likeness of themselves will give the team a chance to practice solving problems together.
  

Pritchard has already implemented the children's recommendations into her curriculum at Mount Royal.

The kids have also presented their opinions to a youth council at Alberta Children's Hospital [2] in the hopes that officials there will develop a program in accordance with their recommendations.

The children's suggestions will not be difficult to incorporate into existing operations at Children's Hospital, Catherine Morrison, said a manager with the Southern Alberta Child and Youth Health Network [3].

The hospital's policies are already established around the notion of family centred care, a philosophy that encourages every member of a child's health care team, including the child, to work more closely together.

Pritchard's research is an addition to that family centred care, which is "not a program as much as it's a foundational philosophy that we want every staff person to buy into and to support," Morrison said.

"So it's not like you would create a division of family centred care where you have a bunch of experts that do the family centred care and provide all the training. You want to prepare everyone who works with children and families to be practising from a family centred perspective."

Morrison is part of a team that investigates how to improve health programs and services that are geared toward children in southern Alberta.
The children's recommendations have piqued the interest of health-care workers in the province, she said.

"Because we've just begun hearing about Andrea's results, it's early days," Morrison said. "And I'm feeling very confident that we will do something with it. It's just trying to find the best pathway."