Children with epilepsy face many physical and psychological consequences.
Authors of the study, “Children’s Experiences of Epilepsy: A Systematic Review of Qualitative Studies” appearing in the September 2016 issue of Pediatrics (published online Aug. 10) reviewed literature from 43 articles involving 951 children ages 3-21 years, to see how these consequences affect the quality of life for children with epilepsy.
The authors found that children with epilepsy experience vulnerability, disempowerment and discrimination. Many say they face an uncertain future in light of failed treatment therapies. Children and adolescents perceive that epilepsy forces them to give up their sense of privacy, bodily control, normality, freedom, and confidence to participate in school and social activities. They report being overwhelmed by the daily uncertainties attributed to the unpredictable timing and potential harm from seizures, side effects of ongoing treatment, and the impermanence of remission. However, young patients feel empowered for self-management when provided with parental and clinician support, including relevant information about epilepsy, treatment and broader psychosocial impacts (e.g. family planning).
The authors conclude that when parents and physicians address the child’s stigma, future independence, and fear of death they can help improve the overall wellbeing of children with epilepsy.