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

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.

Economic burden of the persistent morbidity of nodding syndrome on caregivers in affected households in Northern Uganda

“…These direct costs could have been even higher if the following were not in place: (i) the free provision of treatment by the (Ugandan) government; and, ii) transport support provided to this group of patients by the local community-based organization operating in the area. This was in line with a study by [ 44 ] which showed that the lack of money for transport and medical bills was a big challenge in accessing health care for NS patients and their households.…”

“…with a study by [44] which showed that the lack of money for transport and medical bills was a big challenge in accessing health care for NS patients and their households.…”

Nodding syndrome: recent insights into etiology, pathophysiology, and treatment

“…It is thought that the spirits attack children aged 3–18 years for two reasons; the child-soldiers who were forced to kill them were about that age, and second, the children in this age group who are returning home from the camps played with the unburied remains/bones of the innocently slayed persons. 17 , 22 , 23 The vengeful spirits therefore target the children in this age group. Related to the spirits, community members also think there is an element of retribution from their creator for evils that could have been committed by the forefathers and especially soldiers in the regimes before the current National Resistance Movement government.…”

“…Recourse to traditional medicines was also prompted by the perceived treatment failures with medicines from health facilities and multiple barriers to health seeking at the health facilities. 22 Affected members of the population sought care from multiple sources, hoping to eventually find cure. 35 However, the use of the indigenous approaches also did not lead to durable relief from NS symptoms.…”

Psychological treatments delivered by community health workers in low-resource government health systems: effectiveness of group interpersonal psychotherapy for caregivers of children affected by nodding syndrome in Uganda

“…The burden of NS is exacerbated by frequent co-occurrence of common mental health problems in both the affected child and his/her caregiver. A post-conflict setting in northern Uganda and substantial stigma serve as additional contextual risk factors for poor mental health (Idro et al 2013; Buchmann, 2014; Mutamba et al 2014; Mwaka et al 2015; Nakigudde et al 2016). Not only do depression and post-traumatic stress disorder (PTSD) remain prevalent in northern Uganda (Roberts et al 2008; Mugisha et al 2015 a , d ), but caregivers to children with neuropsychiatric disorders have been found to have high levels of psychiatric morbidity (Okewole et al 2011).…”