Peer support groups as an intervention to decrease epilepsy-associated stigma

Abstract 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 exist 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, and 34 youth), 80 PWE (78%) attended ≥ 6 meetings. There were no significant demographic differences between PWE who attended ≥ 6 meetings and those who attended < 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, medication adherence, or psychiatric morbidity. Peer support groups effectively reduce stigma for youth and may offer a low-cost approach to addressing epilepsy-associated stigma in resource-poor settings.