"Those who died are the ones that are cured". Walking the political tightrope of Nodding Syndrome in northern Uganda: Emerging challenges for research and policy

Abstract

Background Nodding 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. Methodology Ethnographic 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 findings Distrust 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 recommendations Trust 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 dis...

Challenges to Ebola preparedness during an ongoing outbreak: An analysis of borderland livelihoods and trust in Uganda

“…Importantly, it bred tendencies to mistrust authority, which continued throughout the postcolonial era to affect uptake of public services including health services. Additionally, this framing draws on other research on the historical and political context of trust in authorities in Uganda [20,21].…”

Economic burden of the persistent morbidity of nodding syndrome on caregivers in affected households in Northern Uganda

“…NS is reported to impact a high socioeconomic burden for the households and communities where it occurs; for example, such patients are often reported to drop out of school and also, when left untreated, they may not be able to contribute to family income in terms of working, as well as other household duties [19]. Similarly, these patients are reported to mainly die of secondary causes like drowning, falling in fire, and at times from simply wondering off [20,21]. Therefore, parents/guardians of patients must be around to take care of them to prevent such instances.…”

Nodding syndrome: bridging the gap—a scoping review protocol

“…36 A recent publication has described how and why NS has become politicised in Uganda, the effect of this politicisation on health interventions-including research and dissemination-and the possible implications for disease prevention and treatment. 37 Rationale Scientific publications on NS have proposed several aetiological hypotheses, management algorithms and have described the associated social stigma, but none has obtained conclusive or effective results.…”

“…A recent publication has described how and why NS has become politicised in Uganda, the effect of this politicisation on health interventions—including research and dissemination—and the possible implications for disease prevention and treatment. 37 …”