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Young patients find their voice at Toronto’s SickKids Hospital

by admin admin | Aug 18, 2010

Key Messages

Seeking children’s and families’ input can result in tangible improvements to care.

Child-centred care provides children with some measure of control over their lives.

Family- and child-centred care has to permeate the culture of an institution in order to be successful.

The voices of children: they ring out in song, they shout out at play and, at Toronto’s Hospital for Sick Children (SickKids), they speak out about their care.

Child- and family-centred care is part of the culture at SickKids, Canada’s leading centre dedicated to advancing children’s health. One of the ways children are heard at SickKids is through the Children’s Council, a group that goes right to the heart of the hospital’s mission by providing patients between the ages of 9 and 18 with a voice of their own. The children on the council serve as consultants; they advise the hospital on priorities, advocate for children’s health, propose changes that will improve the experiences of children and their families, and provide leadership and guidance for family-centred initiatives at the hospital and in the community.

Caron Irwin is the co-facilitator of the Children’s Council. She says that by providing their input, the children on the council help make the hospital more kid-friendly in ways that wouldn’t occur to adults.

For instance, the children identified that the entrance hall to the operating rooms was an intimidating and frightening place for children arriving for surgery, so they worked with operating room staff to make the hallway a more inviting place by creating a colourful mural on a previously plain beige wall.

Kariym Joachim, now 22, was born with Treacher-Collins Syndrome, a genetic disorder that affects the bones of the face. He was a patient at SickKids from the time he was three months old. He spent five years on the Children’s Council, until he graduated from high school. "When kids feel involved, they do better in care," he explains. "To be a part of that, and to be a voice for children and give them access to the same kind of care I had, was amazing."

Real results for patients and families

Listening to the voices of children has resulted in many innovations, including:

  • changes to the education provided to all team members;
  • communications boards in every room that are "owned" by the families, where they can leave messages ranging from how they would like to be addressed and who the members of their child’s team are to the child’s preferences;
  • changes to the meal delivery program that resulted in children being able to choose from a menu and have their food delivered in containers and with lids that don’t impart a "plastic" taste; and
  • a pilot study to involve children and their family as participants in, rather than simply the subject of, the medical rounds that are conducted each day.

"It’s very empowering for the kids," says Irwin. "We’re coming to realize that a lot of them are very eloquent about what’s frustrating them, what they want changed. They’re very mature, confident, well-spoken. And they take this with them into their daily lives."

Stephanie makes her own decisions

Denise Clayton is one parent who particularly appreciates the hospital’s child-centred philosophy. Her daughter Stephanie, only eight years old, has spent many months at the hospital over the years, undergoing more than 15 surgeries in that time. In a complex life, Clayton says, there’s very little Stephanie can control, but the hospital gives her control of as much as possible.

At four years of age, Stephanie was told she could no longer eat solid food. She decided that, even if she couldn’t swallow the food, she could still chew it, enjoy the texture and flavour, and then spit it out. "It was hard for the doctors to allow a four-year- old to make that decision," says Clayton. "But they did it, and Stephie still does that today."

When kids feel involved, they do better in care.

Over the years, Stephanie has ridden a battery-powered Barbie Jeep into the operating room, put a doorbell outside her room and admitted only the people who rang it and, just last year, built a tent out of bed sheets and surgical tape beside her hospital bed. Anyone who wanted to discuss her upcoming surgery had to do it in the tent.

"Doctor after doctor after doctor, nurse after nurse after nurse, they all got down on their hands and knees and crawled through a tiny hole to talk with Stephie," says Clayton. "I’m sure it was the last thing any of them wanted to do after a long day, but they did it."

"They listened to a child and followed what she needed – not what I needed as a parent," she adds. "They are truly child-centred."

Putting a focus on the whole family's needs The hospital recognizes that children are not the only ones who need support – parents and families are navigating unfamiliar and difficult waters too. The Family-Centred Care Advisory Council has been in existence for over 20 years, bringing parents and former patients together with hospital staff to focus on issues and concerns. The council has started patient social networking pilot projects and is looking for other ways to facilitate peer-to-peer family programs.

"The families and the kids see things through totally different lenses," says Margaret Keatings, the Chief of Inter-Professional Practices and Chief Nurse Executive. "When we did an evaluation a few years ago, we found that children, even very young children, want to be treated with respect. And they want their families to be treated with respect, too."


Margaret Keatings
Chief of Inter-Professional Practices
and Chief Nurse Executive
Hospital for Sick Children

This edition of Pass it on! highlights four Canadian healthcare organizations that are making the patient part of the healthcare team.

Other stories in this edition:


Pass it on! is a publication of the Canadian Health Services Research Foundation (CHSRF). Funded through an agreement with the Government of Canada, CHSRF is an independent, not-for-profit corporation with a mandate to promote the use of evidence to strengthen the delivery of services that improve the health of Canadians. The views expressed herein do not necessarily represent the views of the Government of Canada. © CHSRF 2010