‘These nodding people’: Experiences of having a child with nodding syndrome in postconflict Northern Uganda

Buchmann, Kristine

doi:10.1016/j.yebeh.2014.10.027

Cited by 22 publications

(27 citation statements)

References 16 publications

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“…Under the difficult conditions for health-care provision in the NS affected areas, this could also help patients under study to receive continuing and longterm access to AEDs and to qualified health workers. 45 Because children affected with NS constitute a particularly vulnerable group and their families are not able to cope with the disease on their own, connecting NS research with longterm epilepsy care is also an ethical necessity. Possibly, such projects could be realized by cooperation between research institutions and humanitarian programs.…”

Section: Discussionmentioning

confidence: 99%

Nodding Syndrome, Western Uganda, 1994

Kaiser¹,

Rubaale²,

Tukesiga³

et al. 2015

The American Society of Tropical Medicine and Hygiene

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Abstract. Nodding syndrome (NS) is a poorly understood condition, which was delineated in 2008 as a new epilepsy syndrome. So far, confirmed cases of NS have been observed in three circumscribed African areas: southern Tanzania, southern Sudan, and northern Uganda. Case-control studies have provided evidence of an association between NS and infection with Onchocerca volvulus, but the causation of NS is still not fully clarified. We report a case of a 15-year old boy with head nodding seizures and other characteristic features of NS from an onchocerciasis endemic area in western Uganda, with no contiguity to the hitherto known areas. We suggest that the existence of NS should be systematically investigated in other areas.

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Section: Discussionmentioning

confidence: 99%

Nodding Syndrome, Western Uganda, 1994

Kaiser¹,

Rubaale²,

Tukesiga³

et al. 2015

The American Society of Tropical Medicine and Hygiene

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“…These have included use of both traditional remedies and biomedical treatments. The use of traditional and spiritual remedies may arise from perceptions that nodding syndrome is related to and probably a direct result of war, bomb fumes and associated socio-cultural disruptions [ 8 , 9 ]. On the other hand, most biomedical treatments have focused on control of symptoms of head nodding and seizures with anticonvulsants including carbamazepine, phenytoin, phenobarbital, and sodium valproate [ 3 , 14 , 15 ].…”

Section: Introductionmentioning

confidence: 99%

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

et al. 2015

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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.

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“…NS is very destructive to patients and communities because as it evolves, the victims may develop severe physical and functional deficits, making several children drop out of school and become solely dependent on their caregivers, due in part to the poorly controlled epileptic seizures, cognitive impairments and social stigma (13,14). Such a scenario has made NS a key public health problem in Africa, associated with a high burden of morbidity, as well as grave mental, societal and economic challenges to be reckoned with.…”

mentioning

confidence: 99%

Unravelling the mysterious onchocerciasis—nodding syndrome link: new developments and future challenges

Kakooza‐Mwesige

2017

Ann. Transl. Med.

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‘These nodding people’: Experiences of having a child with nodding syndrome in postconflict Northern Uganda

Cited by 22 publications

References 16 publications

Nodding Syndrome, Western Uganda, 1994

Nodding Syndrome, Western Uganda, 1994

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

Unravelling the mysterious onchocerciasis—nodding syndrome link: new developments and future challenges

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