Self perception and psychosocial functioning in people with intractable epilepsy
It has long been recognised that many people with poorly controlled epilepsy suffer from significant inter-ictal psychosocial problems. Yet there is little consensus on appropriate treatment for such difficulties. It is argued that this has been due to an overconcentration on seizure control in treatment practice and a lack of professional agreement on potential aetiological factors or of consistent appropriate definitions of psychological and social difficulties. Recent research on patients' perceptions of their condition has indicated that such perceptions may be a more potent predictor of psychosocial functioning than objective information such as seizure type or frequency. If such perceptions were found to vary in a consistent and predictable manner, this would have considerable assessment and treatment implications. Analysis was made of the literature on patient perceptions. Four main conceptual areas were implicated: The perceived social effects of epilepsy, the perceived physical effects of epilepsy, perceived control over epilepsy and its effects, and knowledge of epilepsy. From this analysis a hypothetical `perception of epilepsy' model was developed: From this, it was suggested that patients' perceptions vary between `adaptive' perceptions, and `maladaptive' perceptions. It was proposed that `adaptive' perceptions were typified by good knowledge, high efficacy beliefs, high perceived control over seizures and health related behaviours, low fear of seizures and low perceived social limitations imposed by epilepsy. Conversely, `maladaptive' beliefs were typified by poor knowledge, low efficacy beliefs, external control beliefs, high perceived social limitations and high fear of seizures. It was hypothesised that if this model proved to be valid, the more maladaptive an individual's perception, the greater the psychosocial risk. A further supplementary hypothesis was made concerning `underadaptive' perceptions which, it was speculated, would result in passivity and dependency.