Abstract
Background: The stigma of epilepsy is pervasive in developing country contexts and negatively affects the psychological and social wellbeing of its sufferers. The experience of stigma varies across settings and probably relate to disease severity and social characteristics. This study sought to describe the extent and correlates of perceived and enacted stigma among outpatients with epilepsy. Methods: The participants were consecutively presenting epilepsy outpatients in a tertiary facility that attended clinic regularly and had no overt medical or psychiatric co-morbidities. The patients were interviewed with a semi-structured questionnaire. Results: There were 93 participants with a mean age of 30.2 ± 10.3 years and 57.0% were males. The experience of stigma was reported by 46.2% and 67.7% of the participants for perceived and enacted stigma, respectively. Over one-third of the patients had suffered burns or a similar injury in the past. The correlates of perceived stigma were rural residence, lower levels of education, and longer duration of illness. Gender, age and frequency of seizures were not statistically significant determinants. The correlates of enacted stigma were being single, older age, rural residence, and longer duration of epilepsy. A past history of burns and disclosure of epilepsy to individuals outside the family added to the likelihood of experiencing stigma. Conclusion: The burden of epilepsy related social stigma is high in Nigeria. Cultural stereotypes and misconception add to this. There is need for appropriate culture-congruent educational interventions to provide the right information about epilepsy and debunk the misconceptions and myths associated with the condition. This will need to be coupled with astute clinical management of cases and active case finding. Both qualitative and longitudinal quantitative studies would be required to deepen our understanding of the lived reality of grappling with stigma in our setting.
Highlights
Epilepsy causes significant and worrisome life disruption, morbidity and uncertainty among its sufferers and these are related to the nature of the neurological condition [1] [2]
The burden of epilepsy related social stigma is high in Nigeria
There is need for appropriate culture-congruent educational interventions to provide the right information about epilepsy and debunk the misconceptions and myths associated with the condition
Summary
Epilepsy causes significant and worrisome life disruption, morbidity and uncertainty among its sufferers and these are related to the nature of the neurological condition [1] [2] It is associated with debilitating social and psychological impacts, which contribute to the devastation of the lives and wellbeing of the affected individuals. There is need for appropriate culture-congruent educational interventions to provide the right information about epilepsy and debunk the misconceptions and myths associated with the condition. This will need to be coupled with astute clinical management of cases and active case finding.
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