Tracy Nejim and her son, Calen
Epilepsy is a chronic condition affecting approximately 42,000 Canadian children and youth. But when a child is diagnosed, the effects go beyond seizures.
Tracy Nejim knows the impact having a child diagnosed with epilepsy can have on a parent and caregiver. For her family, they’ve had a long journey of small successes and adjusting for set-backs.
Tracy’s son, Calen, is 26 years old and has experienced seizures since birth. Calen was originally diagnosed with infantile spasms and later with Lennox-Gastaut syndrome, a severe form of epilepsy where the individual experiences multiple types of seizures. Calen requires 24 hour care and each day is different depending on his condition.
“There are a lot of factors in how a parent copes with the diagnosis of a child. When you are the primary caregiver, your whole focus in on that one individual and you can lose sight of yourself,” says Nejim. “We are a family that reaches out, but we had to learn how to do that. I was having small crises and I realized I needed to take care of myself to continue caring for my son.”
According to a new study, taking care of oneself can be difficult for mothers of children with epilepsy.
Researchers at Lawson Health Research Institute and Western University showed mothers of newly diagnosed children are at risk of having poor mental health and wellbeing. The research team is the first to study families of children with epilepsy long-term.
The study was led by Dr. Kathy Nixon Speechley, Scientist at Children’s Health Research Institute, a program of Lawson, and Professor at the Schulich School of Medicine & Dentistry, Western University. The study included 365 mothers of children with epilepsy and is part of a larger project that studied family outcomes over a 10-year period.
Researchers Dr. Kathy Speechley and Klajdi Puka are the first to study families of children with epilepsy long-term.
Researchers found that 57 per cent of mothers of children with epilepsy were at risk for major depressive disorder at some point during the 10-year follow-up. They also found that 20 per cent of mothers were at risk for major depressive disorder at the time of their children’s diagnosis and at each follow-up assessment.
Most mothers’ depressive symptoms did not change over a 10-year period, even when their children had been seizure free for more than five years. These results show maternal depressive symptoms are persistent and may not be related to the course of seizure control.
“This study shows that mothers of children with epilepsy are at a high risk for depression and that depressive symptoms often persist over the course of a decade,” says Dr. Speechley.
Researchers also found that a positive family environment at the time of diagnosis was consistently associated with better long-term outcomes. Family environment was assessed using factors like supportive nature, extended social support and satisfaction with family relationships.
Children’s cognitive problems, types of seizures and mothers’ age and education were also associated with the course of depressive symptoms.
“The results of this study suggest family environment could be a key target for intervention due to its effects on parental mental health,” adds Klajdi Puka, a PhD candidate at Western University conducting research under the supervision of Dr. Speechley. “We hope these findings will emphasize the importance of going beyond treating the child and focusing on the family as a whole.”
Researchers hope these results will shed light on the importance of addressing and supporting parents’ needs. These results emphasize the importance of not just treating the child, but considering how the chronic condition affects the family as a whole. Targeting the health and wellbeing of parents is not only important for the parents’ health, but is essential for both a better family environment and the child’s health and wellbeing.
“We need research because there are still so many questions. When our family started on this journey 27 years ago, there was little information available to us and we felt like we were treading into the unknown,” states Nejim. “Research gives families and parents like myself hope.”
Expanding on their work, the research team is now focusing on the prognosis and risk factors for poor long-term mental health.
With funding from the Canadian Institutes of Health Research, the team is piloting an intervention program for both children with epilepsy and their parents. The community-based treatment program will be delivered to 100 families of children with epilepsy. The program will focus on mindful awareness, social-emotional learning skills, neuroscience and positive psychology.
For Nejim family, every day looks different but they encourage themselves to continue with their activities. They believe in living their lives and hoping for a positive day, and making sure Calen feels he is contributing and valued.
“We’ve learned not to live around the seizures. The seizures have to live around us.”
The study, “Prevalence and trajectories of depressive symptoms among mothers of children with newly diagnosed epilepsy: A longitudinal 10-year study,” is published in Epilepsia.