A study from two Western professors aims to help children with epilepsy and their parents.
Making Mindfulness Matter, an eight-week Canadian Institutes of Health Research project, is a community-based family treatment program for children between the ages of four and 10 and their parents.
The program is in partnership with a number of community advocates, including Epilepsy Southwestern Ontario, and is supported by a $459,000 grant from the Canadian Institutes of Health Research over a three-year period.
The program is co-led by Western University’s Kathy Speechley, a professor in the Schulich School of Medicine and Dentistry, and Karen Bax, professor and managing director of the Mary J. Wright Research and Education Centre at Merrymount. It is designed to teach families to cope more easily with epilepsy by learning mindfulness techniques and employing social-emotional learning; children learn to be engaged in the present moment and aware of their surroundings in response to epileptic seizures.
Epilepsy is a predisposition to recurring and unexpected seizures. Speechley said that about 30 per cent of children with epilepsy will not be able to reach adequate control of their seizures through the common treatment of drug therapy.
“There are kids who never really get control of their seizures, so they live with this fear that there is going to be a seizure coming,” she said. “They tend to have emotional mental health problems, behaviour problems [and] cognitive issues, [which] is also the case even in children for whom seizures are resolved.”
The program helps parents and their children develop the skill set to deal with recurring seizures and health problems.
It hopes to demonstrate that interventions can be offered in groups in the community at low costs, which is more feasible than providing one-on-one counselling for each child and their family.
According to Speechley, the program is the result of years of research on factors that diminish the quality of life of children with epilepsy and the best strategies to improve it.
Speechley worked on a study with children across Canada to identify the key factors in a good quality of life with epilepsy. A follow-up showed family environment was more important than the characteristics of the epilepsy itself.
“We’re very excited now to finally be at a point where we have proposed a study where we’re going to try a family treatment that we suspect will help deal with all these factors that we demonstrated have a direct impact on the quality of life,” she said.