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.

Amos Deogratius Mwaka,Stella Neema,David Kitara Lagoro,Willy Olango,John Wilson Etolu,Rachel Oriyabuzu,Richard Idro,Assuman Lukwago,Francis Okot Odwong,Elialilia S Okello,Bernard Toliva Opar,Catherine Abbo,Byamah Brian Mutamba,Jane Ruth Aceng

doi:10.1186/s13104-015-1323-5

Abstract

BackgroundNodding 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.MethodsWe 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.ResultsCaregivers 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.ConclusionsHelp-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.

Highlights

Nodding syndrome has increasingly become an issue of public health concern internationally
Nodding syndrome is a disorder of unknown etiology that has been described in sub Saharan African countries including South Sudan, Uganda and Tanzania [1,2,3]
The majority of participants from the affected regions believe that nodding syndrome could be a politically engineered disorder and this has led to apathy, helplessness and belief that cause and curative treatments are unknown because of purposeful neglect of health needs and lack of will to reduce suffering of people in the affected region by Uganda government [8,9,10,11]

Summary

Introduction

Nodding syndrome has increasingly become an issue of public health concern internationally. Nodding syndrome has increasingly become an issue of public health concern mainly because of the chronic and progressive nature of the disease, lack of curative treatment and the physical and mental debilitations that accompany the disorder [7]. The majority of participants from the affected regions believe that nodding syndrome could be a politically engineered disorder and this has led to apathy, helplessness and belief that cause and curative treatments are unknown because of purposeful neglect of health needs and lack of will to reduce suffering of people in the affected region by Uganda government [8,9,10,11]

Methods

Results

Conclusion