The "burden of normality": concepts of adjustment after surgery for seizures

OBJECTIVES: To conceptualise the process of adjustment provoked by the sudden alleviation of chronic epilepsy by temporal lobectomy. On being rendered seizure free, the process of adjustment primarily depends on the patient's capacity to discard roles associated with chronic epilepsy and to learn to become well. This can involve a reconceptualisation of the patient's identity from chronically ill to "cured", and can give rise to a constellation of psychological, affective, behavioural, and sociological features characterised as the "burden of normality". METHODS: This is a theoretical inquiry that documents the clinical phenomenology of the burden of normality by classifying its key psychological and psychosocial features. The model of adjustment is presented in the context of previous outcome research on surgery for seizures, providing a conceptual link between practice based rehabilitation measures of outcome and multidimensional constructs, such as health related quality of life. RESULTS: The model represents a process oriented, theoretical framework for comprehensively measuring outcome after life changing medical interventions. It has implications for clinical practice, including the identification of preoperative predictors of outcome and informing appropriate management and rehabilitation of patients. CONCLUSION: This model of outcome after temporal lobectomy may ultimately be applicable to the treatment of other chronic conditions.