The psychosocial impact of epilepsy on children and adolescents is profound, ranging from a sense of vulnerability and disempowerment to discrimination, results from a systematic review of medical literature suggest.
“Children and adolescents perceive that epilepsy forces them to relinquish their sense of privacy, bodily control, normality, freedom, and confidence to participate in school and social activities,” researchers led by Lauren Chong wrote in a study published online Aug. 10 in Pediatrics. “They are 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.”
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In an effort to describe the perspectives of children and adolescents with epilepsy, Ms. Chong of the Sydney School of Public Health at the University of Sydney, New South Wales, Australia, and her associates searched Medline and other key databases for qualitative primary studies on children’s experience of epilepsy from inception to August 2015 (Pediatrics. 2016;138[3]:e20160658. doi: 10.1542/peds.2016-0658). They used thematic synthesis to analyze their findings. The final analysis included 43 articles involving 951 children and adolescents aged 3-21 years from 21 different countries. Articles written in a language other than English were excluded.
The researchers identified six themes: loss of bodily control such as a sense of being overtaken and alertness to mortality; loss of privacy such as humiliating involuntary function and unwanted special attention; inescapable inferiority and discrimination such as vulnerability to prejudice and inability to achieve academically; therapeutic burden and futility such as financial burden and insurmountable side effects; navigating health care such as unexpected necessity of transition as well as fragmented and inconsistent care; and recontextualizing to regain normality such as distinguishing disease from identity and gaining perspective and maturity.
The researchers observed some differences in experiences and perspectives based on patient age and disease severity. For example, “feelings of loss and abnormality tended to be expressed more strongly by older adolescent patients,” they wrote. “As young adults, they were aware of the potentially serious ramifications of epilepsy on their future, including their independence, school performance, vocation, and relationships. Teenage patients were more frustrated by social limitations on partying, drinking, and sleepovers that differentiated them from their peers.” Patients with more severe disease, meanwhile, “contended with disempowerment and seemed less able to delineate epilepsy from their identity. They seemed more willing to trial therapies that may work and some, on being told they would not achieve remission, chose to disengage from the health care system, deeming further treatment or follow-up to be futile.”
Suggestions for clinical practice based on the analysis include providing access to support groups of other epilepsy sufferers or other children/adolescents with chronic disease; facilitating liaisons between clinicians, families, and school teachers, and delivering coordinated care with psychologists and psychiatrists to address psychosocial aspects of epilepsy.
“Treatment and management should address the psychosocial needs of patients regarding stigma, present lifestyle limitations, and future concerns,” the researchers wrote. “These suggestions may inform strategies for practice and research that may contribute toward the improved [quality of life], therapeutic satisfaction, and health outcomes of children and adolescents with epilepsy.”
Ms. Chong is supported by the University of Sydney Neuroscience Network Research Scholarship. Another coauthor, Allison Tong, PhD, is supported by the National Health and Medical Research Council Fellowship. The researchers reported having no financial disclosures.