Families with a Child with Epilepsy: A Sociological Contribution

Summary This paper reports a pilot study of thirteen children with epilepsy and their families; the parents' efforts to obtain help for the child and the effect of the child's disability on the family relationships are described. About half of the parents did not consult the family doctor immediately after the first appearance of signs of epilepsy (patient delay). About a quarter of the family doctors delayed referral of the patient with epilepsy to the specialist (doctor's delay). Another 3 years passed, on average, before the patient reached a special centre or clinic for epilepsy (specialist delay); in three-quarters of all cases the first step to get there was taken by the parents and not by the specialist and chance plays an important role in determining how the entry into this third echelon is achieved. Reasons for the search for more specialized help were: dissatisfaction with the results of the treatment and the kind of rapport with the second echelon specialist. The out-patient clinic for epilepsy is generally favourably commented on because the expert medical advice is combined with the availability of a social worker, thus offering support with social problems also. As regards the influence of the illness on the family, there is evidence that family life is disrupted to a greater or less extent. The parents experience psychological stress and are generally apprehensive lest something will happen to their child. In a number of cases the relationships between siblings are rather disturbed. The parents, especially mothers, tend to (over-)protect the child with epilepsy. The child with epilepsy has a relatively isolated position in his social environment; he has few informal or formal social contacts with his peer group. The condition epilepsy contributes to a diminution of expectations for the future and curtailment of scholastic behaviour.