Coping with the uncertainty of uncontrolled epilepsy.

Parents of children with uncontrolled epilepsy experience chronic uncertainty in relation to their child's condition. In this study the author sought to explore the levels and dimensions of uncertainty experienced by parents of children with Lennox-Gastaut syndrome; the relationship between parental uncertainty and stress; and the range of cognitive and behavioural coping responses employed by parents. The population is drawn from a self-help group for parents of children with L.G.S. coordinated by the author. Data was collected through questionnaires as well as in-depth interviews with parents. The findings revealed five key dimensions of uncertainty: in respect to (1) diagnosis, (2) aetiology, (3) seizure activity, (4) treatment, and (5) prognosis. The study highlights the importance of information, contact with other parents of children with uncontrolled epilepsy and diary writing as aids to reducing uncertainty and enhancing coping for parents. The paper concludes by calling for a re-evaluation of the role of parents of children with epilepsy which moves away from the notion of parents as a source of pathology for their children to parents as part of a family unit attempting to cope as best it can with a chronic illness.