Holland Bloorview Kids Rehabilitation Hospital

Infinite Possibilities 2007-2012: Strategic Plan

Goal 1: Centres for Leadership in Childhood disability

Just doing it! Improving Health through Participation

Everywhere we go, we are surrounded by health advice and warnings. We are constantly being told what foods to eat, or how much sun we should get, or how many seconds we should spend washing our hands.  Dr. Amy McPherson, Research Scientist in the Centre for Participation and Inclusion, asks the question: “How can we expect people to take on these responsibilities and to follow all of this if they haven’t had the training in childhood?”  This question is especially important for children with disabilities.

Amy McPherson arrived at Bloorview this past June from the University of Nottingham in the UK, where she was a lecturer and researcher in the field of health psychology. Health psychology is the branch of psychology that deals with how people cope with illnesses and how to promote positive health behaviours. Amy’s specific area of research interest is Participation, one of Bloorview’s two areas of initial focus for leadership in childhood disability. Amy has been hired to assist Bloorview in achieving the key goals as articulated in the Strategic Plan 2007-2012, Infinite Possibilities.

Amy is currently in the process of designing a research program for Bloorview that will help improve our understanding of the physical and psychological effects of encouraging children with disabilities to play a greater role in their care. The idea behind Amy’s research is that if we begin to promote healthy behaviours, coping mechanisms, and feelings of being in control of one’s own health early in childhood, this can have a positive lifelong impact. According to Amy, people often assume children are able to do less or understand less than they actually do, and this is possibly more of an issue for children with disabilities.

“There’s a growing quantity of information about how we can encourage children without disabilities to help themselves. However, we don’t know a lot about the same sort of thing for children with disabilities,” says Amy.

Amy is working closely with clinicians and researchers at Bloorview to understand their priorities and to see where the opportunities are to explore the impact of improved client choice and empowerment.

“Clients at Bloorview may have greater limitations than others, but my research involves empowering children to participate in their health care to whatever level they are comfortable,” says Amy.

According to Amy, participation research involves re-orienting our thoughts about what children can do for themselves, instead of simply doing things for them. 

“Even two year olds can often hold a toothbrush or shake an inhaler. They might not be doing it correctly right away, but they can be involved from early on – not just leaving it to mum, or dad, or the doctor or the nurse,” Amy says.

Amy’s research work in the UK with children with chronic illnesses, including asthma and diabetes, revealed very interesting evidence for participation and inclusion. To explore the effects of participation in care among children with asthma, Amy studied how using an interactive multi-media software intervention helped children to develop asthma self-management skills and knowledge.

“With children with asthma, we showed that children who were active in their care (with this multimedia tool) had more knowledge of their condition, were more in control of their asthma, had fewer sick days from school and fewer emergencies,” Amy explains. “There were improved physical and psychological outcomes.”

Amy is very excited about the opportunity to be at Bloorview and to really hone down on this program of research specifically with children with disabilities. “There is a tremendous opportunity to learn at Bloorview,” says Amy. “In my experience, kids always surprise you with what they can do!”