A peer support group intervention to decrease epilepsy-related stigma in an onchocerciasis-endemic area in Mahenge, Tanzania: A pilot study

A high burden of epilepsy has been reported in sub-Saharan Africa (SSA) particularly in onchocerciasis endemic areas. To improve the quality of life of persons with epilepsy (PWE) in Mahenge, an onchocerciasis-endemic area in Tanzania, we established peer support groups (PSG) in two out of four rural villages (Mdindo, Msogezi, Mzelezi and Sali). One year later (between February and July 2020), we carried out a cross-sectional survey among PWE and their caregivers in the four rural villages with the aim of comparing perceived stigma among PWE in study sites with and without PSG. Perceived stigma was measured using the validated Kilifi stigma scale of epilepsy (KSSE), whose total score ranges from 0–30. A generalized linear mixed regression model was used to identify factors associated with high stigma scores. A total of 161 PWE participated in the study; 76 (47.2%) resided in villages where a PSG intervention was implemented. The overall mean stigma score was 3.7 ± 4.6, with no significant difference between villages with and without PSG (p = 0.537). Only one PWE (0.6%) scored above 20 (very high perceived stigma). Experiencing more seizures during the past week (Coef = 1.013 [0.568, 1.457]), having attended school (Coef = 1.821 0.345, 3.297], and a history of physical abuse (Coef = 3.200 [0.574, 5.827]) were associated with higher stigma scores. Perceived stigma in rural villages in Mahenge is a major public health problem. A follow-up study is needed to determine the medium- to long-term effect of the PSG intervention on perceived epilepsy-related stigma.