Epilepsy in Zimbabwe – an historical and ethnographic approach to demystifying an ancient disease

Sen, A.; Katzidi, T.; Vallentin, S.; Mugumbate, J.; Mahone, S.; Ngwende, G.

Background and aims: There is little historical and ethnographic work examining the impact of epilepsy on long-term relationships in Africa. Here, we take a culturally sensitive approach to try and better disentangle factors that may contribute to misconceptions about epilepsy in Zimbabwe. Methods: Initially, through a series of community-based workshops organised by the Epilepsy Support Foundation of Zimbabwe, we analysed stigmatisation of epilepsy in urban and rural settings. Workshops consisted of initial presentations on epilepsy followed by small group discussions. We implemented learning from these workshops to develop surveys, translated into native Zimbabwean languages, to capture, at scale, how both the person with epilepsy and those close to them perceive epilepsy. Results: Around 100 people participated in workshops based in Harare, Masvingo and Gweru. Considerable stigmatisation persists, particularly perpetuated by older members of local communities. Men with epilepsy felt disempowered by their ability to not work or participate in certain social activities. Both men and women agreed, however, that females with epilepsy were more likely to be subject to prejudice and potentially exposed to greater risk – for example having to cook on open fires away from other village members. While the survey questionnaires are prepared, deployment has not yet proved possible owing to the COVID 19 pandemic. Conclusions: Our study again emphasises that multiple misconceptions surround epilepsy, which can lead to severe stigmatisation. The surveys will provide the detailed insight necessary to develop tailored solutions to help empower those with epilepsy as well as the friends and family who help care for them.