Seizure 1992; 1: 43-48 The impact of chronic epilepsy on the family PAMELA J. THOMPSON & DOMINIC UPTON* Epilepsy Research Group, Chalfont Centre for Epilepsy, Buckinghamshire and *Institute of Neurology, London, UK Correspondence to Dr Pamela J. Thompson, Chalfont Centre for Epilepsy, Chalfont St. Peter, Bucks SL9 ORJ, UK 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. Key words: epilepsy; family; carers; seizures; stress; social support. INTRODUCTION Epilepsy, unlike many other chronic disorders, is characterized by unpredictability and sud- denne::s of symptoms. Not only do seizures generally occur without warning, but they can take a variety of potentially embarrassing and dangerous forms depending upon the specific circumstances in which they occur. People with epilepsy may also experience discrimination and stigma at work and in social settings. Con- siderable research now exists documenting the variety of psychological and social difficulties encountered by people with epilepsy, particu- larly in poorly controlled cases1-3. Our clinical experience over several years has shown that levels of stress may be elevated, not only in the person with epilepsy but also in family members, and that witnessing frequent seizures may be just as stressful as experienc- ing the seizures personally. The impact of epi- lepsy on the family, however, has attracted remarkably little research interest. The majority of existing studies have focused on childhood epilepsy. Mothers and siblings seem particularly at risk of increased psycholo- gical morbidity*-‘. Indeed, Rutter et al. (1971) 1059-1311/92/010043+06 $03.0010 reported in an epidemiological study in the Isle of Wight that one fifth of mothers having chil- dren with epilepsy had a history of a nervous breakdown-a greater incidence than in fami- lies with a child who had cerebral palsy or other chronic conditions*. Possible variables that contribute to this psychological morbidity have been explored, and it has been empha- sized that family members’ perceptions are an important predictor” and that the severity of the epilepsy may have less influence on family disruption’i, 12. Other investigations of the family have focused on parental rearing prac- tices when a child has epilepsy. These tend to be rather blame-laying, indicating over-protec- tion and other restrictive practices by family members13’ ‘*. Other reports have suggested that these mother/child interactions can lead to psychosocial problems for the child with epilepsy15. Less work has been undertaken in adults with epilepsy. Anderson and Barton” reported a small study in which they investigated the levels of emotional and social adjustment in patients with epilepsy and significant others (those living in the same household as the person with epilepsy). In their study, the @ 1992 Baillibre Tindall