SummaryBackground-Among the 40 million people with epilepsy worldwide, 80% reside in low-income regions where human and technological resources for care are extremely limited. Qualitative and experiential reports indicate that people with epilepsy in Africa are also disadvantaged socially and economically, but few quantitative systematic data are available. We sought to assess the social and economic effect of living with epilepsy in sub-Saharan Africa.

CNS OIs are frequent, potentially treatable complications of AIDS in Zambia. Multiple pathogens often coexist in CSF. EBV is the most prevalent CNS organism in isolation and in coinfection. Whether it is associated with CNS disease or a marker of inflammation requires further investigation. More comprehensive testing for CNS pathogens could improve treatment and patient outcomes in Zambia.

Objective-Zambia suffers from a physician shortage, leaving the provision of care for those with epilepsy to nonphysician health care workers who may not be adequately trained for this task. These individuals are also important community opinion leaders. Our goal in this study was to determine the knowledge, attitudes, beliefs, and practices of these health care workers with respect to epilepsy.Methods-Health care workers in urban and rural districts of Zambia completed a selfadministered, 48-item questionnaire containing items addressing demographics, personal experience with epilepsy, social tolerance, willingness to provide care, epilepsy care knowledge, and estimates of others' attitudes. Analyses were conducted to assess characteristics associated with more epilepsy care knowledge and social tolerance.Results-The response rate was 92% (n = 276). Those who had received both didactic and bedside training (P = 0.02) and more recent graduates (P = 0.007) had greater knowledge. Greater knowledge was associated with more social tolerance (P = 0.005), but having a family member with epilepsy was not (P = 0.61). Health care workers were generally willing to provide care to this patient population, but ~25% would not allow their child to marry someone with epilepsy and 20% thought people with epilepsy should not marry or hold employment. Respondents reported that people with epilepsy are feared and/or rejected by both their families (75%) and their community (88.8%).Conclusions-Knowledge gaps exist particularly in acute management and recognition of partial epilepsy. More recent graduates were more knowledgeable, suggesting that curriculum changes instituted in 2000 may be improving care. Health care workers expressed both personal and professional reservations about people with epilepsy marrying. In addition to improving diagnosis

Epilepsy-associated stigma in Africa has been largely described in terms of enacted stigma or discrimination. We conducted a study of 169 adults with epilepsy attending epilepsy clinics in Zambia's Lusaka or Southern province using a 3-item instrument (maximum score 3). Potential determinants of felt stigma including age, gender, education, wealth, disclosure status (meaning whether or how their community members knew of their condition), seizure type (generalized vs. partial), seizure frequency, the presence of visible epilepsy-associated stigmata, personal contagion beliefs and community contagion beliefs were also assessed. The median stigma score was 2.5, suggesting some ceiling effect in the instrument. People with epilepsy who believed their condition to be contagious, who thought their community believed epilepsy to be contagious and whose condition had been revealed to their community against their wishes reported more felt stigma. Community and clinic-based educational campaigns to dispel contagion beliefs are needed.

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Eighty percent of people with epilepsy (PWE) reside in low-income countries where stigma contributes substantially to social and medical morbidity. Peer support groups (PSGs) are thought to be beneficial for people with stigmatized conditions, but little data exists regarding PSG effectiveness. We facilitated monthly PSG meetings for men, women, and youth from three Zambian clinics for one year. Pre- and post-intervention assessments measured internalized stigma, psychiatric morbidity, medication adherence, socioeconomic status, and community disclosure. Of 103 participants (39 men, 30 women, 34 youth), 80 PWE (78%) attended ≥6 meetings. There were no significant demographic differences between PWE that attended ≥6 vs. <6 meetings. Among youth attending ≥6 meetings, internalized stigma decreased (p<0.02). Among adults, there was a non-significant stigma decrease. No differences were detected in medication use, adherence, or psychiatric morbidity. PSGs effectively reduce stigma for youth and may offer a low-cost approach to addressing epilepsy-associated stigma in resource-poor settings.