title: Nodding syndrome or disease? On the conceptualization of an illness-in-the-making.
abstract: OBJECTIVE
  To explore processes of conceptualizing nodding syndrome (NS), an unknown illness which has been reported to affect thousands of children in post-conflict northern Uganda, in South Sudan and in Tanzania.
  
  
  METHODS
  This qualitative study comprised 40 in-depth interviews with affected families, health workers and politicians during five months of fieldwork in northern Uganda and a review of available reports, newspapers and academic literature on NS. In addition, observations have been made at treatment centers and during outreaches and meetings. Focus is put on how meanings of key terms related to NS are produced and negotiated. Attention is being paid to the circulation of different discourses and explanatory models.
  
  
  RESULTS
  Discourses and explanatory models play an active role in the conceptualization of illness, as much by medical personnel as by affected families and the media. The prominent use of biomedical terms in the academic discourse on NS is striking; links are suggested with onchocerciasis and epilepsy. In contrast, the local discourse associates NS with social issues. The illness experiences are connected to the trauma of past conflict, to poverty and to (region-bound) frustration over neglect. The cultural significance of physical symptoms raises the question of the impact of culture on health.
  
  
  CONCLUSIONS
  By only looking at the biomedical significance of this new syndrome, we will miss important aspects of how this illness is being experienced and understood. In our future dealings with NS, we will have to consider and re-conceive the relation between culture and neurobiology.
authors.affiliation: a Centre for Studies in African Humanities , Ghent University , Ghent , Belgium.
authors.forename: Karin
authors.initials: K
authors.lastname: van Bemmel
authors.forename: Ilse
authors.initials: I
authors.lastname: Derluyn
authors.forename: Koen
authors.initials: K
authors.lastname: Stroeken
mesh_terms: D000293:Adolescent; D001291:Attitude of Health Personnel; D001294:Attitude to Health; D002648:Child; D002675:Child, Preschool; D005190:Family; D006291:Health Policy; D006292:Health Priorities; D006801:Humans; D007407:Interviews as Topic; D064128:Nodding Syndrome / Q000175:diagnosis / Q000209:etiology / Q000503:physiopathology / Q000523:psychology; D011057:Politics; D036301:Qualitative Research; D014454:Uganda