Children with epilepsy have a higher risk of developing emotional and behavioural disorders, including depression, anxiety and poor self-esteem, yet it has been difficult for researchers to pinpoint why this occurs. In a new study, researchers at Children’s Health Research Institute (CHRI), a program of Lawson Health Research Institute, have found that family environment influences the relationship between clinical characteristics of epilepsy at diagnosis and children's emotional well-being two years later.
Emotional well-being is a broad measure of emotional functioning that includes multiple aspects of mental health, such as depression, anxiety, anger, happiness, or confidence. The researchers studied a group of children aged four to 12 with new-onset epilepsy, investigating factors at the time of diagnosis and their impact on the emotional well-being of the children two years later. The study focused on the role of the family environment, an area that has not been well-studied.
Results showed that clinical factors related directly to the children’s epilepsy, such as the type of epilepsy and frequency of seizures, were not associated with emotional well-being. Instead, several family characteristics, including family stresses, functioning and resources, were strongly associated with emotional well-being.
“This is important for how we think about patient care,” says Dr. Kathy Speechley, principal investigator on the study, Chair of the Children’s Health & Therapeutics Division at CHRI and a professor at Western University’s Schulich School of Medicine & Dentistry. “Treating the physical symptoms of chronic disease alone often does not result in significant improvements in quality of life. We need to examine other avenues for care.”
“From the time of diagnosis forward, it’s important for the health care team to take a broader, family-centred approach beyond controlling a child’s seizures. This means developing a better understanding of what day-to-day life is like for families living with childhood epilepsy, including their stressors, how well they are functioning and the resources they have to aid their adaptation to stressful life events,” says Dr. Shane Goodwin, first author on the study, which was conducted while he was a PhD candidate in the Department of Epidemiology & Biostatistics at Schulich Medicine & Dentistry and a trainee at CHRI. He is currently a postdoctoral fellow at the University of Waterloo.
One example of a family-centered approach to care the researchers point to is referring patients and their families to support programs, such as Clinic to Community in Southwestern Ontario. The Clinic to Community program is funded by the Ontario Brain Institute, and provides information about epilepsy and a network of support services.
The researchers completed the study using data from the Health-Related Quality of Life in Children with Epilepsy Study (HERQULES), a multicenter prospective cohort study based in Children’s Hospital at London Health Sciences Centre.
They will now continue to analyze data from the same group of patients as they progress toward adulthood and will develop intervention trials aimed at supporting families’ successful adaptation to life with epilepsy.
The study received funding from the Canadian Institutes of Health Research and the Children’s Health Foundation.
