A new study has revealed that children with epilepsy often have a high level of understanding about their condition.
Led by Leipzig University and University Hospital Heidelberg in Germany, the research involved 84 children with epilepsy between the ages of six and 18 years and their parents, and investigated how the children perceived their own condition and health status.
It is understood that children with epilepsy often face difficulties in daily life, but self-assessment data among these individuals remain rare. To address this, the current study invited children with epilepsy to take part in a structured interview and draw a picture depicting their own view of their condition.
The results, published in the medical journal Epilepsy & Behavior, revealed that 75% of the children were able to name their condition correctly, whilst 96% were able to say whether they had to take medication and 52% of those taking long-term medication correctly named the drugs they had been prescribed.
In addition, 54% of the children named specific precautions to prevent harm from seizures, with 7% of these believing that non-adherence to safety precautions would cause new seizures, and 27% perceived themselves to be worse off than healthy children.
The survey also highlighted a few misconceptions that exist among young people with epilepsy, with 12% believing that their medication would cure their condition and 10% believing that their epilepsy might be contagious.
With respect to the illustrations, 80% of the children drew a picture entitled “This is how I feel when I have a seizure”, as requested. Specific symptoms and the interaction between the child and their environment were the most common subjects depicted in the drawings.
The research concludes: “Most children with epilepsy had rather good knowledge about medication; half of the children knew specific safety precautions. The children were often able to describe their seizures well. Pictures drawn by patients can give an insight into their experiences.
“Teaching programmes should, among others, address the fear of contagiousness of epilepsy in some children and the fact that children with epilepsy might feel disadvantaged.”
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