What is the Worst Part About Having Epilepsy? A Children’s and Parents' Perspective

Abstract Do children and parents view epilepsy similarly? Children and their parents at an epilepsy camp received a voluntary survey. Twenty children (aged 9-15 years) and their parents responded. Fifty percent of children and 27% of parents thought social stigmatization comprised the worst part of...

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Bibliographic Details
Published in:Pediatric neurology 2012-12, Vol.47 (6), p.431-435
Main Authors: VanStraten, Amanda F., MD, Ng, Yu-Tze, MD
Format: Article
Language:English
Subjects:
Adolescent
Attitude to Health
Biological and medical sciences
Child
Emotions
Epilepsy - psychology
Female
Headache. Facial pains. Syncopes. Epilepsia. Intracranial hypertension. Brain oedema. Cerebral palsy
Humans
Male
Medical sciences
Nervous system (semeiology, syndromes)
Neurology
Parents
Pediatrics
Social Environment
Surveys and Questionnaires
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Summary:Abstract Do children and parents view epilepsy similarly? Children and their parents at an epilepsy camp received a voluntary survey. Twenty children (aged 9-15 years) and their parents responded. Fifty percent of children and 27% of parents thought social stigmatization comprised the worst part of having epilepsy, whereas 38% and 40%, respectively, chose physical seizures. Over half of children and parents would want to have fewer or no seizures if they could change one thing. Sixty-seven percent of children and 93% of parents agreed that epilepsy camp was fun, and the other third of children considered it a place where they felt normal. Overall, children with epilepsy and their parents agreed. Despite the morbidities and potential risks of seizures and of the treatments themselves, the majority of children were most concerned with the stigma attached to having epilepsy.
ISSN:0887-8994
1873-5150
DOI:10.1016/j.pediatrneurol.2012.08.011