title: Is the glass half full or half empty? A qualitative exploration on treatment practices and perceived barriers to biomedical care for patients with nodding syndrome in post-conflict northern Uganda.
abstract: BACKGROUND
  Nodding syndrome has increasingly become an issue of public health concern internationally. The etiology of the disorder is still unknown and there are yet no curative treatments. We explored perceptions about treatment practices and barriers to health seeking for nodding syndrome in Pader and Kitgum districts in northern Uganda in order to provide data necessary for informing policy on treatment adherence and rehabilitations.
  
  
  METHODS
  We used focus group discussions and individual interviews to gain deep insights into help-seeking and treatment practices for nodding syndrome. Purposive sampling was used to identify information-rich participants that included village health teams, community members not directly affected with nodding syndrome, district leaders, healthcare professionals, and caregivers of children affected with nodding syndrome. We used qualitative content analysis to analyze data and presented findings under distinct categories and themes.
  
  
  RESULTS
  Caregivers and communities sought care from multiple sources including biomedical facilities, traditional healers, traditional rituals from shrines, and spiritual healing. Nodding syndrome affected children reportedly have showed no enduring improvement with traditional medicines, traditional rituals, and prayers. A substantial minority of participants reported minimal improvements in symptoms of convulsions with use of western medicines. Challenges involved in health seeking included; (1) health system factors e.g. long distances to facilities, frequent unavailability of medicines, few healthcare providers, and long waiting times; (2) contextual and societal challenges e.g. lack of money for transport and medical bills, overburdening nature of the illness that does not allow time for other activities, and practical difficulties involved in transporting the physically deformed and mentally retarded children to the health facilities.
  
  
  CONCLUSIONS
  Help-seeking for nodding syndrome is pluralistic and include use of traditional and biomedical practices. Western medicines admittedly showed at least short term control on nodding syndrome symptoms, especially convulsions and led in a few cases to regain of functional abilities. However, multiple barriers hinder health seeking and interfere with adherence to biomedical treatments. Regarding cure, there are hitherto no treatments participants perceive cure nodding syndrome.
authors: Department of Medicine, Mulago Hospital and the School of Medicine, College of Health Sciences, Makerere University, P.O Box 7072, Kampala, Uganda. mwkaaad@yahoo.com.
authors: Amos Deogratius
authors: AD
authors: Mwaka
authors: Department of Psychiatry, Mulago Hospital and the School of Medicine, College of Healthcare Sciences, Makerere University, Kampala, Uganda. elialilia@yahoo.co.uk.
authors: Elialilia S
authors: ES
authors: Okello
authors: Department of Psychiatry, Mulago Hospital and the School of Medicine, College of Healthcare Sciences, Makerere University, Kampala, Uganda. cathya180@gmail.com.
authors: Catherine
authors: C
authors: Abbo
authors: Global Friends, Kampala, Uganda. frodwong@gmail.com.
authors: Francis Okot
authors: FO
authors: Odwong
authors: Global Friends, Kampala, Uganda. olangowilly@gmail.com.
authors: Willy
authors: W
authors: Olango
authors: Soroti Regional Referral Hospital, Soroti, Uganda. jwetolu@yahoo.co.uk.
authors: John Wilson
authors: JW
authors: Etolu
authors: Department of Psychiatry, Mulago Hospital and the School of Medicine, College of Healthcare Sciences, Makerere University, Kampala, Uganda. roriya2000@gmail.com.
authors: Rachel
authors: R
authors: Oriyabuzu
authors: School of Medicine, Gulu University, Gulu, Uganda. klagoro@gmail.com.
authors: David Kitara
authors: DK
authors: Lagoro
authors: Department of Psychiatry, Mulago Hospital and the School of Medicine, College of Healthcare Sciences, Makerere University, Kampala, Uganda. byamamutamba@yahoo.com.|Butabika National Mental Referral Hospital, Kampala, Uganda. byamamutamba@yahoo.com.
authors: Byamah Brian
authors: BB
authors: Mutamba
authors: Department of Paediatrics and Child Health, Mulago Hospital and the School of Medicine, College of Health Sciences, Makerere University, Kampala, Uganda. ridro1@gmail.com.|Centre for Tropical Medicine and Global Health, University of Oxford, Oxford, UK. ridro1@gmail.com.
authors: Richard
authors: R
authors: Idro
authors: Ministry of Health Headquarters, Kampala, Uganda. bopato@gmail.com.
authors: Bernard Toliva
authors: BT
authors: Opar
authors: Ministry of Health Headquarters, Kampala, Uganda. janeaceng@gmail.com.
authors: Jane Ruth
authors: JR
authors: Aceng
authors: Ministry of Health Headquarters, Kampala, Uganda. lukwagoman@yahoo.com.
authors: Assuman
authors: A
authors: Lukwago
authors: Department of Sociology and Anthropology, Makerere University, Kampala, Uganda. sheisim@yahoo.com.
authors: Stella
authors: S
authors: Neema
mesh_terms: D002648:Child; D003430:Cross-Sectional Studies; D005260:Female; D006297:Health Services Accessibility; D006801:Humans; D008297:Male; D064128:Nodding Syndrome / Q000453:epidemiology / Q000523:psychology / Q000628:therapy*; D036301:Qualitative Research; D014187:Transportation of Patients; D014454:Uganda / Q000453:epidemiology; D014857:Warfare