ArticleEuropean journal of pediatrics2020
Why do children and adolescents with epilepsy disclose or not disclose their condition to their friends?
Article in European journal of pediatrics, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 4 papers.
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Who cites it
4 citing papers in PubMed.
- Epilepsy in children and young people as a stigma throughout history: identifying cultural, religious and educational factors to design strategies for contemporary social inclusion.Frontiers in neurology · 2026Review
- Stigma perception and health fatalism in parents of children with epilepsy: A cross-sectional study.Heliyon · 2024Article
- Illness conversations: Self-disclosure among children and youth with chronic illnesses.Chronic illness · 2023Review
- Self-Disclosure Patterns Among Children and Youth with Epilepsy: Impact of Perceived-Stigma.Adolescent health, medicine and therapeutics · 2023Review
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Authors and funding
7 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
A diagnosis of epilepsy substantially influences the lives of affected children and adolescents, and concealing the diagnosis can generate additional stress. However, little is known about whether children and adolescents communicate their diagnosis to their friends. We performed a survey at two German university hospitals. Epilepsy patients aged 6-18 years were asked why they did or did not disclose their condition to their friends. A total of 101 patients (44 female, 57 male) were interviewed. Twenty-one (21%) informed all their friends about their epilepsy, 63 (62%) informed only certain friends, and 3 (3%) did not specify. Fourteen (14%) did not inform any friends. Their reasons for informing their friends were trust in friends (47/87; 54%); questions from friends, e.g., about missed school days (29/87; 33%); a wish for friends to be informed in case of an emergency (15/87; 17%); and a desire to live openly with the condition (8/87; 9%). The reasons for not informing friends were fear of stigmatization/shame (4/14; 29%), discouragement from parents (3/14; 21%), and a wish for confidentiality (3/14; 21%).Conclusion: Most children and adolescents inform their friends about their epilepsy. Fear of stigmatization is the main reason for not informing friends about this condition. What is Known • An epilepsy diagnosis is a life-changing event for affected children and adolescents. • Having to conceal the diagnosis can be very stressful. What is New • Most pediatric epilepsy patients informed at least some close friends about their diagnosis motivated by trust in friends; questions from friends, e.g., about missed school days; and a wish for friends to be informed in case of an emergency. • Fear of stigmatization/shame, discouragement from parents, and a wish for confidentiality were the motivations for concealing the disease.
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