'There Were Moments We Wished She Could Just Die': The Highly Gendered Burden of Nodding Syndrome in Northern Uganda.

Nodding Syndrome (NS) occurs within a wide spectrum of epilepsies seen in onchocerciasis endemic areas of sub-Saharan Africa. It has debilitating consequences on affected individuals and increases the socio-economic, physical and psychological burden on care-givers and their households, diminishing their standing within the community. Social science research on the disproportionate burden of the disease on females is limited. Based on ethnographic research over 3 years in northern Uganda, we explored the burden of being ill and care-giving for persons with NS from a gendered perspective. We found that NS-affected females were at greater risk of physical and psychological abuse, sexual violence, unwanted pregnancies, sexually transmitted infections and stigma, in a context of deteriorating socio-economic conditions. Primary care-givers of the NS-affected, mostly women, struggled to make ends meet and were subjected to stigma and abandonment. Targeted interventions, including legal protection for affected females, stigma reduction, and psycho-social and financial support are needed.

Reducing neurodevelopmental disorders and disability through research and interventions.

We define neurodevelopment as the dynamic inter-relationship between genetic, brain, cognitive, emotional and behavioural processes across the developmental lifespan. Significant and persistent disruption to this dynamic process through environmental and genetic risk can lead to neurodevelopmental disorders and disability. Research designed to ameliorate neurodevelopmental disorders in low- and middle-income countries, as well as globally, will benefit enormously from the ongoing advances in understanding their genetic and epigenetic causes, as modified by environment and culture. We provide examples of advances in the prevention and treatment of, and the rehabilitation of those with, neurodevelopment disorders in low- and middle-income countries, along with opportunities for further strategic research initiatives. Our examples are not the only possibilities for strategic research, but they illustrate problems that, when solved, could have a considerable impact in low-resource settings. In each instance, research in low- and middle-income countries led to innovations in identification, surveillance and treatment of a neurodevelopmental disorder. These innovations have also been integrated with genotypic mapping of neurodevelopmental disorders, forming important preventative and rehabilitative interventions with the potential for high impact. These advances will ultimately allow us to understand how epigenetic influences shape neurodevelopmental risk and resilience over time and across populations. Clearly, the most strategic areas of research opportunity involve cross-disciplinary integration at the intersection between the environment, brain or behaviour neurodevelopment, and genetic and epigenetic science. At these junctions a robust integrative cross-disciplinary scientific approach is catalysing the creation of technologies and interventions for old problems. Such approaches will enable us to achieve and sustain the United Nations moral and legal mandate for child health and full development as a basic global human right.

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.

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.

'These nodding people': Experiences of having a child with nodding syndrome in postconflict Northern Uganda.

BACKGROUND: Nodding syndrome, an epidemic epileptic encephalopathy of unknown etiology, has affected an estimated 1834 children in Northern Uganda. Children are being treated symptomatically but inconsistently with antiepileptic drugs. DESIGN: Ten semistructured interviews with caregivers of affected children and five focus group discussions with 23 relatives, teachers, and religious leaders were conducted to examine the experiences of affected families and communities in Kitgum and Pader districts. The researcher also did participant observation during MoH outreach clinics. Data collection was carried out from July to September 2012, and data were analyzed through inductive thematic analysis. RESULTS: Nodding syndrome severely affects the children's ability to participate in daily life activities. Daily seizures and physical features such as salivating and stunting make them unable to pass as normal, and mood changes make it difficult for some to interact with others. Caregivers of children with nodding syndrome feel confined to their homes, and economic activities are reduced, which affects entire families, especially the education of healthy siblings. The familial clustering and the unknown etiology made many separate from the affected children when eating, sleeping, and having seizures because of a fear of transmission through saliva. Families struggle to provide care with minimal resources and have experienced a reduction in visitors since their children were affected by nodding syndrome. There were signs of apathy in patterns of care, and, generally, parents felt that antiepileptic medicine had brought only slight improvement in their child's condition because many had begun treatment when developmental milestones had already been lost. CONCLUSIONS: A consistent supply of antiepileptic medication is likely to reduce the stigma and fear of transmission, as the affected children's acceptance among others was greatly compromised whenever they had seizures. The loss and suffering involved with nodding syndrome are seen as a continuation of the confinement and trauma once caused by war, and a good regimen of medication is not the whole answer.

Nodding syndrome or disease? On the conceptualization of an illness-in-the-making.

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. DESIGN: 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. CONCLUSION: 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.

Neuropsychiatric perspectives on nodding syndrome in northern Uganda: a case series study and a review of the literature.

BACKGROUND: Nodding Syndrome (NS), previously called Nodding Disease, is a chronic and debilitating illness affecting thousands of children aged 3-18 years in post-conflict Northern Uganda and South Sudan. Characterised by malnutrition, stunted growth, mental retardation and seizures, some researchers have designated it as epilepsy. With reports appearing in Northern Uganda in1997, NS reached epidemic proportions around 2000-2003 when people were moved into Internally Displaced People's (IDP) camps. Investigations for infections (onchocerciasis) and toxins have been inconclusive as to cause, treatment or outcome. No study has addressed the possible relationship of NS to childhood war-trauma experiences. OBJECTIVE: To explore a possible relationship of exposure to prolonged war-trauma and the emergence of epidemic NS in Northern Uganda. METHOD: This study was a case-series descriptive psychiatric naturalistic field observations of NS cases from homesteads in Northern Uganda and psychiatric investigations and treatment of NS cases referred to Mulago National Referral and Teaching Hospital. RESULTS: Detailed Psychiatric clinical evaluations and field observations revealed that NS children had been exposed to severe war-related psychological and physical trauma as well as non-specific CNS insults including untreated CNS infections/infestations and malnutrition possibly causing seizures. Many children suffered post-traumatic stress disorder (PTSD) and depression. CONCLUSION: NS could present as an association of childhood complex PTSD, (called Developmental Trauma Disorder), occurring in the chronically war-traumatised children of Northern Uganda, complicated by severe prolonged depression with its characteristic symptoms of psychomotor retardation, anxiety, anhedonia and anorexia. This, coupled with food shortages, resulted in malnutrition, wasting and stunted growth with severe avitaminoses. Many children had seizures. All this calls for multi-disciplinary treatment approaches.

Proposed guidelines for the management of nodding syndrome.

Nodding Syndrome is a poorly understood neurologic disorder of unknown aetiology that affects children and adolescents in Africa. Recent studies have suggested that the head nods are due to atonic seizures and Nodding Syndrome may be classified as probably symptomatic generalised epilepsy. As part of the Ugandan Ministry of Health clinical management response, a multidisciplinary team developed a manual to guide the training of health workers with knowledge and skills to manage the patients. In the absence of a known cause, it was decided to offer symptomatic care. The objective is to relieve symptoms, offer primary and secondary prevention for disability and rehabilitation to improve function. Initial management focuses on the most urgent needs of the patient and the immediate family until 'stability' is achieved. The most important needs were considered as seizure control, management of behavioural and psychiatric difficulties, nursing care, nutritional and subsequently, physical and cognitive rehabilitation. This paper summarises the processes by which the proposed guidelines were developed and provides an outline of the specific treatments currently being provided for the patients.

Stereotypes on Nodding syndrome: responses of health workers in the affected region of northern Uganda.

BACKGROUND: Nodding Syndrome is a debilitating disorder of yet unknown etiology that has affected children and adolescents aged 3 - 18 years in parts of sub Saharan African countries including Uganda, South Sudan, Tanzania and Liberia. OBJECTIVE: To identify stereotypes and negative attitudes held by primary care health workers about nodding syndrome. METHOD: Of one hundred health workers invited by the Uganda Ministry of Health for training on nodding syndrome from the three most affected districts of Pader, Lamwo and Kitgum forty were interviewed using a predesigned tool. Content and thematic analysis was applied. RESULTS: There were 22 females. The median age was 33 years (range 23-54 years). The participants included Psychiatric Clinical Officers, Medical Clinical Officers, Laboratory Technicians, Midwives, Registered and Enrolled Nurses. Overall, four broad categories of negative stereotypes were identified; Nodding syndrome is 1) an incurable disease, 2) is associated with evil spirits and curses, 3) is disabling, making the patient a burden to society and 4) is a fatal illness. CONCLUSION: Primary health care workers who lead the care of patients with nodding syndrome have several negative stereotypes that may potentially impact negatively on the quality of care they provide.