Perceived stigma of epilepsy remains a major public health problem among children and adolescents and it is highly associated with preventable or modifiable factors. Therefore, there is need to design interventions that can address these factors in order to reduce the stigma and its potential future complications such as educational inequalities.

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Background: Epilepsy is a neurological disorder that has a high worldwide prevalence with eighty percent of the global burden being in low and middle-income countries. There is a high level of perceived stigma among children and adolescents with epi- lepsy, which has severe debilitating effects and affects school attendance. Objective: To assess the effect of perceived stigma on school attendance patterns among children and adolescents with epilepsy. Methods: We conducted a cross sectional study among 191 children and adolescents aged from 6-18 years with epilepsy at one large semi-urban hospital and a small rural health center in SouthWestern Uganda. Epilepsy-related perceived stigma was measured using the adapted Kilifi Stigma Scale of Epilepsy and school attendance patterns were assessed using a piloted inves- tigator-designed questionnaire. Results: Children with high-perceived stigma were more likely to have never attended school (13.8%) or started school late (average age 5.7 years) compared to those with low-perceived stigma (average age 4.9 years). Additionally, those with high epilep- sy-related perceived stigma repeated classes 2.5 times more compared to those with low-perceived stigma. Conclusion: These preliminary findings suggest correlation between high-perceived stigma and disrupted school attendance patterns among children and adolescents with epilepsy, hence the need to address this social challenge. Keywords: Epilepsy; perceived stigma; school attendance; children; adolescents; Uganda.

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BackgroundEpilepsy is a neurological condition that is highly prevalent among children and adolescents with 80% of the victims living in low- and middle-income countries (LMIC). Epilepsy is associated with high levels of both perceived and enacted stigma, which vary geographically and greatly affects the victims’ quality of life and self-esteem. High rates of stigma are also a significant barrier to accessing medical care. Perceived and enacted epilepsy-related stigma is associated with various sociodemographic and clinical factors, which vary from place to place. Therefore, this review will determine the prevalence of stigma of epilepsy among children and adolescents and the associated factors worldwide.MethodsWe will search for literature in PubMed, EMBASE, PsycINFO, and CINAHL databases as well as grey literature. We will also search via Google Scholar to capture relevant literature that may not be in the searched databases. We will then screen reference lists of included studies for more studies. Studies that have documented the prevalence of epilepsy-related perceived or enacted stigma and the associated factors will be eligible for inclusion. Data will be extracted in duplicates using a pre-piloted tool consisting of study and participant characteristics as well as pre-determined factors associated with epilepsy. Heterogeneity will be assessed by a forest plot and quantified by I2 statistic, and in case it is high, results will be reported as a narrative and it will further be explored by subgroup analysis. In case of homogeneity, meta-analysis will be done. Bias will be assessed using a critical appraisal tool developed for prevalence studies. The strength of evidence among the studies will be assessed using the GRADE approach.DiscussionFindings from this review will document the burden of stigma of epilepsy and the common contributing factors, which will form the building blocks of interventions that address this health challenge.Systematic review registrationPROSPERO CRD42017058957