Giving Voice to Sick Kids

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

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

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.