Background: Nodding syndrome, an epidemic epileptic encephalopathy of unknown etiology, has affected an
estimated 1834 children in Northern Uganda. Children are being treated symptomatically but inconsistently
with antiepileptic drugs.
Design: Ten semistructured interviews with caregivers of affected children and five focus group discussions with
23 relatives, teachers, and religious leaders were conducted to examine the experiences of affected families and
communities in Kitgum and Pader districts.
The researcher also did participant observation during MoH outreach clinics. Data collection was carried out from
July to September 2012, and data were analyzed through inductive thematic analysis.
Results: Nodding syndrome severely affects the children's ability to participate in daily life activities. Daily
seizures and physical features such as salivating and stunting make them unable to pass as normal, and mood
changes make it difficult for some to interact with others. Caregivers of children with nodding syndrome feel
confined to their homes, and economic activities are reduced, which affects entire families, especially the
education of healthy siblings. The familial clustering and the unknown etiology made many separate from the affected
children when eating, sleeping, and having seizures because of a fear of transmission through saliva. Families
struggle to provide care with minimal resources and have experienced a reduction in visitors since their
children were affected by nodding syndrome. There were signs of apathy in patterns of care, and, generally, parents
felt that antiepileptic medicine had brought only slight improvement in their child's condition because many
had begun treatment when developmental milestones had already been lost.