The Vulnerability of Children with Epilepsy
Children with epilepsy experience vulnerability, disempowerment and discrimination according to a review of international studies by researchers from Kids Research Institute at The Children’s Hospital at Westmead, along with colleagues from the University of Sydney and the University of NSW. ‘Children’s Experiences of Epilepsy: A Systematic Review of Qualitative Studies’, published in Pediatrics, reviewed studies involving 951 children with many including direct quotations from participants aged 3-21 years.
The review found children with epilepsy face a range of physical and psychological consequences. Many felt they suffered discrimination due to the visibility of their condition, particularly seizures. Children and adolescents said epilepsy forces them to give up their sense of privacy, bodily control, normality, freedom and confidence to participate in school and social activities. They reported facing an uncertain future in light of failed treatment therapies and were overwhelmed by the daily uncertainties with the unpredictable timing and potential harm from seizures, side effects of ongoing treatment and the impermanence of remission.
Despite this, young patients felt empowered as they came to accept and control their disease and were confident with self-management when provided with parental and clinician support. Empathetic and responsive healthcare helped encourage them to work through the personal impacts of their epilepsy, giving them the capacity to manage their disease and distinguish it from their identity. The review of these international studies concluded that overall wellbeing of children with epilepsy can be improved when parents and physicians address the child’s stigma, future independence and fear of death.