Perception of the Population in Northern Uganda to Nodding syndrome

Abstract

Nodding Syndrome (NS) is a newly recognized condition affecting many young children in developing nations. It’s characterized by repetitive dropping forward of the head and seizures. The affected children are stunted, malnourished and dehydrated. The disease was first reported in northern Uganda in 2009 but health experts diagnosed it as epilepsy. The disease has attracted international attention due to the progressively worsening head nodding, cognitive decline and malnutrition among the suffering children. This study was aimed at examining the perceptions of the population in the Northern Uganda to the possible cause of Nodding Syndrome. We conducted a cross sectional study on the parents/Guardians of children with Nodding syndrome and health workers who were being trained in screening and management of patients with Nodding syndrome. Focus group discussions and Key informant interviews were used as methods for data collection. Ethical approval for the study was obtained from the Committee of Gulu Hospital and Ministry of Health of Uganda. Most health workers believed it was the war which was the cause of the disease while the parents mainly believed it was due to witchcraft and deaths that occurred during the prolonged LRA war in Northern Uganda. The perceptions of the health workers were completely at variance with those of the guardians of children with Nodding syndrome. The communities in northern region have varied beliefs and perceptions about the cause of Nodding syndrome and this is likely to present one of the greatest challenges in the management of the syndrome. A more comprehensive study needs to be conducted in the region to study knowledge, attitude, beliefs and practices of the population in the Northern Uganda to Nodding syndrome.