Program eases stress for families with epilepsy

Paul Mayne

Western professors Karen Bax (Education) and Kathy Speechley (Paediatrics and Epidemiology & Biostatistics) will soon begin a three-year study around a community-based family treatment program for children with epilepsy.

A community-based treatment program is hoping it will soon help children, and their parents, deal better with the non-medical issues surrounding epilepsy.

“Epilepsy is a very complex package to deal with,” said Kathy Speechley, Western professor of Paediatrics and Epidemiology & Biostatistics, noting up to 80 per cent of children dealing with epilepsy have other concerns, such as psychological, behavioural and cognitive issues that persist even if seizures are controlled.

Speechley and Western Education professor Karen Bax are leading a Canadian Institutes of Health Research project, a grant of $459,000 over three years, called Making Mindfulness Matter (M3).

The eight-week program will be delivered by non-medical staff and incorporate mindful awareness, social-emotional learning skills, neuroscience and positive psychology.

“The vast majority of health-care service use for people with epilepsy is about non-seizure related problems. So, it’s not as simple as just treating the seizures. We really like that it’s an intervention that could be delivered to children and parents, knowing the family environment is so important.”

M3 is modelled after the school-based MindUP programwhich has been shown to improve depressive symptoms, and help with emotional control, optimism, cognitive control and stress physiology.

Epilepsy is the fourth most common neurological disorder that affects people of all ages. The condition comes with a wide range of seizure types and can cause other health problems.

Bax said research during the past decade shows mindfulness is beneficial for different medical and mental-health issues and for general well-being.

“The program combines social-emotional learning and mindful awareness – the skills we use every day but we can always improve on, in particular with children,” said Bax, director of the Mary J. Wright Research and Education Centre at Merrymount Children’s Centre.

Speechley said family environment has the greatest influence on quality of life for a child with epilepsy.

“If we can help the families deal with the stress they have, the epilepsy, as well as the other surrounding issues, this should improve their quality of life,” said Speechley, who is also a Lawson Health Research Institute scientist (Children’s Health Research Institute). “We were searching for something that’s outside the box that we could intervene with these kids and their parents to try and make living with epilepsy better.”

The M3 research program will recruit children with epilepsy (ages 4-10), and their parents in a study to determine if this low-cost, community-based intervention can improve outcomes for the children, many of whom experience psychological distress.

“The children and parents will learn about the brain and what happens when it’s under stress,” Bax said about some of the teaching of the M3 program. “They then begin to learn how mindfulness connects all the parts of your brain, and how you can make good choices even though your brain is feeling stressed and the first reaction is to strike out or yell.

“Rather than reacting, you’re responding. So, through their senses, taking what we call brain breaks and focusing on your breath for 30 seconds, learning social-emotional skills which can be used to respond. For example, learning around gratitude and positivity, taking in another person’s perspective,” said Bax.

Speechley said the program will be delivered in partnership with a number of community advocates for epilepsy, including Epilepsy Southwestern Ontario.

“The health-care system, as we know, is really burdened and we need to have some kind of intervention that is low-cost and feasible,” said Speechley. “The beauty of this is it’s delivered in the community. This is a much more integrated system, not just the medical treatment of epilepsy. It’s creating this bridge between the medical care and the rest of your life.”