The information needs and understanding of 5-10-year old children with epilepsy, asthma or diabetes

This exploratory study compared the information needs and understanding of 25 5-10-year olds with epilepsy with those of 10 children with asthma and 10 with diabetes (of the same age range). The children were interviewed whilst attending specialist clinics by the first author and were unaware of her professional status. All the children had access to specialist nurses and their families had received literature about their condition. The interview covered five main areas: knowledge of their condition, psychological effects, medication, restrictions on lifestyle, where they obtained their information and if they had unanswered questions. The children with epilepsy had far more unanswered questions and felt excluded from discussions with doctors. They also appeared reluctant to tell their friends their diagnosis and, at such a young age, felt stigmatized by their condition. The results highlight a contrast in the understanding of children with epilepsy when compared with those with asthma or diabetes. It is proposed that if a simple biological model were used to explain epilepsy this could aid children's understanding and reduce their reluctance to disclose their diagnosis.