The interplay of sense making and decision-making processes on treatment and prevention of Nodding Syndrome by different stakeholders: an ethnographic exploration in Cameroon, Tanzania and Uganda

Nodding Syndrome(NS), an apparent form of epilepsy, was first reported in 1960 by Jilek-Aall in Southern Tanzania (Aall-Jilek 1965). Scientists have tried investigating the cause of this syndrome for over half a century without any clear biomedical answers about its aetiology. Sidestepping this lack of clarity, clinicians named the condition after its most characteristic symptom – head nodding – and the name stuck until today. So far, biomedical scientists have dominated scientific literature about NS. They have established an association between Nodding Syndrome and the presence of onchocerciasis or river blindness, a parasitic disease transmitted by the blackfly (Tumwine et al. 2012, Foltz et al. 2013, CDC 2012, Kitara, Mwaka, Wabinga, et al. 2013, Kitara, Mwaka, Anywar, et al. 2013, Wamala et al. 2015, Johnson et al. 2017). However, the evidence on whether this is the cause of the syndrome or not is still inconclusive. There is also an ongoing debate in the biomedical community on what defines Nodding Syndrome (WHO 2012, Spencer et al. 2015). While the biomedical scientists are looking inside the body, the anthropologists are trying to make sense of NS through ethnographic knowledge from communities affected. Separate from the scientists, the patient and caretakers, are simultaneously making sense of NS through their psycho-social, political, and economic lived experiences. By examining sense-making involving NS, this project aims to ethnographically explore the daily lives of directly and indirectly affected people, their movements and exposures using a psycho-social, political and environmental lens while maintaining the historical perspectives of the disease as it unfolded in the affected areas of Cameroon, Tanzania and Uganda. Data was constantly analysed and emerging results were reassessed. To collect empirical data, I used observations, in-depth interviews, informal conversations, life histories and focus group discussions, while also reflecting on my approach as an ethnographic researcher in trying to make sense of NS. The fact that there is no authoritative biomedical explanation, leaves space for other modes of explanations (Zhan 2001) and this ambiguity may lead to changing rules for different decision makers and stakeholders (Hogle 2002) in how NS prevention and treatment is addressed.

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