The influence of poorly controlled epilepsy on the family and family functioning

Abstract

Although the negative effects of epilepsy on the individual's psychosocial well-being have been increasingly documented in the last decade, the influence of the condition on the family has attracted much less interest, especially in adult epilepsy. Some studies have indicated that it may cause psychosocial difficulties, and effect the functioning of the family. However, these studies frequently used small samples, focusing only on limited areas of functioning and well-being. In order to address these shortcomings the aims of this study were: to develop a questionnaire battery to survey the levels of psychosocial functioning in adults with epilepsy and their families; to survey the level of psychosocial distress in families; to compare these levels to those in non-epilepsy families; to investigate the relationship between seizure/epilepsy variables, family functioning and psychosocial distress; and to estimate the perceived extent of health and social services provision, and satisfaction with these services. Families were contacted through an epilepsy outpatient clinic, and given a questionnaire battery examining psychosocial well-being, service provision, and family functioning. Psychological well-being and physical health were found to be poor, and dissatisfaction with some areas of social circumstances was also reported. However these difficulties were not found to relate to seizure variables, which may be attributed to the overriding influence of the stigmatising label of epilepsy. Family interactions were also found not to be detrimentally effected, as functioning was similar to that of a control group. This may be due to the narrow scope of the scale used to measure family interactions. Although satisfaction with services was generally good, the study indicated that informal services such as voluntary agencies are currently underused. This may have important implication as such services may not only provide support for the family but they may also reduce the burden on more formal services, However, the cross sectional nature of the study makes it difficult to draw further conclusions about the long term impact of epilepsy, which needs to be addressed in future research through the use of longitudinal studies. The study does however importantly indicate that the widespread psychological and social impact of epilepsy on those in the family is still being ignored. Only when this is acknowledged can the need of this silently suffering population be addressed.