Caring for Children with Nodding Syndrome: exploring the construction of a new disease through looking at disrupted cultural models and the emergent struggle of good care.

Abstract

In this thesis illness as a socio-cultural construct is examined. Specifically, I look at the way nodding syndrome is incorporated in the daily lives of Acholi families of northern Uganda that have been afflicted with this illness. Nodding syndrome affects children between the ages of five and fifteen, showing signs of head nodding, epileptic seizures, stunted growth and cognitive impairment. Building on medical anthropological understandings of illness as socially constructed in explanatory models, I analyse nodding syndrome to be a disruption of Acholi cultural models of childhood and parenthood. Through this disruption, people are forced to reflect on ideas and practices of care and invent new ones. In this struggle for good care, thoughts about illness and practices toward the patients are inextricably linked, and thus I argue that examining good care can further our understanding of illness as a social construct. In order to conceptualize care practices, I draw on anthropological theories of care as an ethical framework and reciprocity theory. To connect the debates on construction of illness and on care, I will put forward the concept of good care, as a way to dissect the construction of illness in a particular context of care relationships. Good care is conceptualised as an emic framework of shared ideas and practices concerning childcare in Acholiland, drawing in practice theory this is understood as a habitus of care. Returning to the focus on construction of illness, the complex interactions surrounding good care, reveal changing ideas and practices toward nodding syndrome showing a dialectical intertwinement of care and illness.