Abstract
BackgroundNodding Syndrome was first reported from Tanzania in the 1960s but appeared as an epidemic in Northern Uganda in the 1990s during the LRA civil war. It is characterized by repetitive head nodding, often followed by other types of seizures, developmental retardation and growth faltering with onset occurring in children aged 5–15 years. More than 50 years after the first reports, the aetiology remains unknown and there is still no cure. The recent hypothesis that Nodding Syndrome is caused by onchocerciasis also increases the relevance of onchocerciasis control. Northern Uganda, with its unique socio-political history, adds challenges to the prevention and treatment for Nodding Syndrome. This article aims to show how and why Nodding Syndrome has been politicised in Uganda; how this politicisation has affected health interventions including research and dissemination; and, the possible implications this can have for disease prevention and treatment.MethodologyEthnographic research methods were used triangulating in-depth interviews, focus group discussions, informal conversations and participant observation, for an understanding of the various stakeholders’ perceptions of Nodding Syndrome and how these perceptions impact future interventions for prevention, treatment and disease control.Principal findingsDistrust towards the government was a sentiment that had developed in Northern Uganda over several decades of war and was particularly linked to the political control and ethnic divisions between the north and south. This coincided with the sudden appearance of Nodding Syndrome, an unknown epidemic disease of which the cause could not be clearly identified and optimal treatment had not clearly been established. Additionally, the dissemination of the inconclusive results of research conducted in the area lacked sufficient community involvement which further fueled this political distrust. Disease perceptions revolved around rumours that the entire Acholi ethnic group of the north would be annihilated, or that international researchers were making money by stealing study samples. This discouraged some community members from participating in research or from accepting the mass drug administration of ivermectin for prevention and treatment of onchocerciasis. Such rumour and distrust led to suspicions concerning the integrity of the disseminated results, which may negatively impact future disease management and control interventions.Conclusions and recommendationsTrust must be built up gradually through transparency and by de-politicising interventions. This can be done by engaging the community at regular intervals during research and data collection and the dissemination of results in addition to involvement during service delivery for prevention and treatment. Maintaining a regular feedback loop with the community will help control rumours, build trust, and improve the preparations for adequate dissemination.
Highlights
Nodding Syndrome (NS), a severely debilitating neurological syndrome mainly affecting children, is considered a “political” issue in Uganda, unlike other affected areas such as Tanzania [1]. This “politicization” of NS is the result of a long history of ethnic divisions [2], which are tied up with political power struggles and the civil war that was ongoing at the start of the epidemic [1, 3]
Around 1998, when the war between the Lord’s Resistance Army (LRA) and the current government was at its peak, more than half of the population in northern Uganda was living in internally displaced persons [4] camps [3, 5]
Given the timing of the NS epidemic, community members linked the aetiology of NS to the LRA war in several ways
Summary
Nodding Syndrome (NS), a severely debilitating neurological syndrome mainly affecting children, is considered a “political” issue in Uganda, unlike other affected areas such as Tanzania [1] This “politicization” of NS is the result of a long history of ethnic divisions [2], which are tied up with political power struggles and the civil war that was ongoing at the start of the epidemic [1, 3]. Around 1998, when the war between the Lord’s Resistance Army (LRA) and the current government was at its peak, more than half of the population in northern Uganda was living in internally displaced persons [4] camps [3, 5] This was when the NS epidemic erupted. This article aims to show how and why Nodding Syndrome has been politicised in Uganda; how this politicisation has affected health interventions including research and dissemination; and, the possible implications this can have for disease prevention and treatment
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