The Impact of Chronic Epilepsy on the Family

The emotional impact of intractable epilepsy on family members is a neglected topic, with the majority of studies confined to childhood epilepsy. Our clinical experience suggests that family members, particularly parents, may at times be under considerable emotional strain, especially when seizures are frequent and accompanied by injury. The purpose of this study was to explore the psychological and physical well-being, satisfaction with social circumstances and perceived level of support in families with an adult member with intractable epilepsy. Forty-four families were administered rating scales of mood and answered questions relating to their social situation and physical health. Levels of stress and dissatisfaction with their social situation was high, particularly in primary carers (the mother in most instances). Respite periods away from their caring role were few and the perceived level of support was low. Poor emotional adjustment was associated with severity of tonic and atonic seizures and episodes of status. Additionally, perceived low levels of support were associated with depression.