OBJECTIVES: The primary objective of this study was to measure the psychosocial burden for persons with epilepsy (PWEs) and for their spouses and to compare and correlate this with the clinical burden of seizures. A secondary objective was to examine the presence of gender-specific differences in the perception of psychosocial burdens by both PWE and their spouses, as well as in the factors that may influence this perception. This study also sought to delineate differences in perceived stigmatization if the onset of epilepsy was within matrimony or if seizure onset was prior to marriage.
METHODS: A questionnaire was constructed from previously validated instruments to measure stigma and was administered to 50 PWE-spouse pairs. A copy was applied to the PWE, and another was administered separately to the spouse. The medical notes were scrutinized by a Consultant Neurologist to enable an assessment of seizure severity for each type of seizure that the PWE experienced. Pearson correlation significance was examined at 95% level of significance.
RESULTS: Higher seizure severity over the month prior to data collection correlated with smaller reporting differences in psychosocial outcome between spouses and the PWE (p = 0.005), an effect that maintained significance when the period over which seizure severity was evaluated was extended to one year (p = 0.021). Regarding gender-specific differences, low mood over the month prior to administration of the questionnaire was associated with worse psychosocial scores in females only (p = 0.001). Significant impairment in driving was correlated with worse outcomes in males only (p = 0.008). Male spouses’ judgment on the ‘overall health’ of their wife correlated to seizure severity (p = 0.003). However, the psychosocial scores reported by male spouses were inversely correlated to those of the PWE (p = 0.042). Finally, in PWE with seizure onset within marriage, a high degree of perceived stigmatization (p = 0.025) and low mood (p = 0.004) was correlated to worse psychosocial functioning. This group also tended to be more anxious when the PWE was experiencing severe seizures (p = 0.013).
CONCLUSION: Although severe seizures in this sample of couples were correlated with a smaller discrepancy in perceived seizure burden, gender-specific differences in perception of epilepsy-related psychosocial burden exist. This is true for both people with epilepsy and their spouses. Irrespective of gender, onset of epilepsy within matrimony was correlated with higher levels of anxiety and stigma. These factors need to be considered during efforts to reduce epilepsy-related stigmatization, as well as in tailoring therapies that aim to support the spouse as well as the people with epilepsy.