UBC Reports | Vol. 49 | No. 11 | Nov. 6, 2003

Giving Voice to Sick Kids

By Hilary Thomson

You’ve been ill for years, seen dozens of doctors and live with symptoms that affect every aspect of your life. Yet it often seems you have little to say about any of it.

That’s the usual scenario for many kids with chronic illness. It’s a situation that Gladys McPherson wants to improve.

“Children tend to be excluded from many decisions where they could reasonably be involved,” says McPherson, a School of Nursing PhD student and pediatric nurse. “Kids’ voices often get lost in the dialogue between parents and health-care professionals. Especially in our highly technological medical environment, a child’s opinion may be the last thing to be considered.”

In an 18-month study, McPherson will interview 40 Lower Mainland children aged seven to 11 who are suffering from chronic illnesses that include diabetes, epilepsy, asthma and rheumatoid arthritis. She will also interview their parents. Participants from a variety of cultural backgrounds will be recruited.

She wants to know how children see their contribution to decision-making and to understand parents’ views of children’s participation. She will also analyze how participation varies according to the type of decision and the nature of the illness.
Kathy O’Flynn-Magee’s daughter, now 14, was diagnosed with Type I diabetes at age three.

“The actual choices have changed over time, but I’ve always tried to give her some input,” she says. “Even when she was little, she could make the choice of where to inject her insulin. Now, she makes daily choices about food, exercise and insulin doses by herself. It’s been a bit hard for me to make that transition, but I think it’s crucial for me to think about her as an adolescent first and as an adolescent with diabetes second.”

There is little guidance for health-care professionals to understand and evaluate what chronically ill children want and need. McPherson’s research will expand and deepen insight into what children think about their opportunities and abilities to make decisions about their treatment. Findings will also guide policy-makers looking for ways to provide optimal health care.

“Some people would say it’s inappropriate to have kids contribute to decisions about serious illness,” say McPherson. “We have an ethical commitment, however, to make sure that children’s perspectives are considered in all matters that affect them.”

Parents are often torn between their beliefs about the child’s needs and the child’s wishes and feelings, says McPherson. Parents and health-care providers tend to look at long-term health requirements, but kids focus on day-to-day experiences like wanting to share in birthday cake or hoping to fit in with their friends.

Many chronically ill children have very regimented routines and are eager to have some control in their own lives. Their input can be as simple as determining timing of therapies or the way therapy is delivered.

“It may be something as simple as being able to say ‘I’ll take the medicine in 10 minutes -- not right now,’” says McPherson.

Research participants will be identified with the help of Surrey Memorial Hospital, part of Fraser Health Authority, as well as BC Cancer Agency and B.C.’s Children’s Hospital, sites of the Provincial Health Services Authority.