Parents' perceptions of adversity introduced by upheaval and uncertainty at the onset of childhood epilepsy

K. J. Oostrom*, A. Schouten, C. L.J.J. Kruitwagen, A. C.B. Peters, A. Jennekens-Schinkel

*Corresponding author for this work

    Research output: Contribution to journalArticleAcademicpeer-review


    Purpose: We report the parent's perceptions of and reactions to the onset of "epilepsy only" and the implications for continuity of parenting. Methods: Content analysis was used to extract data on perceived (dis)continuity of parenting, from interviews held with parents of 69 schoolchildren in whom idiopathic or cryptogenic epilepsy ("epilepsy only") had recently been diagnosed. Results: Almost half of the parents (42%) perceived neither themselves nor their child as having been thrown off balance by the onset of epilepsy. Quite a few parents (33%) perceived themselves rather than their child as having been thrown off balance. More parents of children with cryptogenic than with idiopathic epilepsy perceived themselves as being off balance. However, parents' perceptions of their children's reactions to the epilepsy-related changes were not influenced by any epilepsy variable. Rather, family trouble, long-standing behavioral problems, and adolescence contributed to the child's maladaptive reaction. Three extremely off-balance parents had children with seizures of "unclassifiable" epilepsy that later were found to be nonepileptic and psychogenic. Conclusions: The majority of the parents perceived their child as adapting well to the onset of epilepsy only. Children with seizure onset in adolescence and children with other adversities were perceived as adapting poorly to the additional adversity of epilepsy. Cryptogenic rather than idiopathic etiology leaves parents in great suspense. In behavioral studies, it is advisable to treat children with unclassifiable epilepsy as a separate group.

    Original languageEnglish
    Pages (from-to)1452-1460
    Number of pages9
    Issue number11
    Publication statusPublished - 27 Dec 2001

    Cite this