Epilepsy & Behavior 42 (2015) 71–77

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‘These nodding people’: Experiences of having a child with nodding syndrome in postconflict Northern Uganda Kristine Buchmann ⁎ Egekrogen 12 D, 3500 Vaerlose, Denmark

a r t i c l e

i n f o

Article history: Received 3 June 2014 Revised 20 October 2014 Accepted 23 October 2014 Available online xxxx Keywords: Nodding syndrome Onchocerciasis Seizure Emerging disease Fear of transmission Burden of care Postconflict Northern Uganda

a b s t r a c t 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. © 2014 Elsevier Inc. All rights reserved.

1. Introduction In Northern Uganda, an estimated 1834 children are affected by nodding syndrome [1], a neurological syndrome of unknown pathogenesis. The disease was first described in southern Tanzania in 1962 [2–4], in Liberia in 1983 [5], and in South Sudan in 1991 [6–8]. The syndrome is described as an epidemic epileptic encephalopathy, and clinical studies have shown cerebral atrophy, gliotic lesions, and hippocampal sclerosis [2,9–11]. Affected children, predominantly between 5 and 15 years of age, present with head nodding and seizures. The children gradually lose their cognitive function and become stunted and malnourished partly because the sight of food provokes bouts of head nodding [3,9,10,12]. A large proportion of the affected children are infested with the parasite Onchocerca volvulus which is spread by the black fly and causes ⁎ Tel.: +45 91690914. E-mail address: [email protected].

http://dx.doi.org/10.1016/j.yebeh.2014.10.027 1525-5050/© 2014 Elsevier Inc. All rights reserved.

river blindness. This parasite has been a central clue in the etiology of the syndrome, but elevated antibodies to the parasite in the cerebrospinal fluid of the affected children have not been found [13]. Onchocerciasis has previously been associated with both seizures and stunting; for every 10% increase in the prevalence of onchocerciasis, epilepsy rates go up by 0.4% [14]. A large proportion of children and adults in the affected areas are infested with this parasite; thus, it is unclear why people living in other endemic regions have not experienced outbreaks of nodding syndrome or why it is occurring in the affected regions at this moment in time [12]. Scientists have examined different theories of causation but have not found any evidence that the disease is caused by dietary practices, chemical exposure during wartime, genetics, viral encephalitis, or vaccines [12,15]. In Northern Uganda, affected children have been treated with antiepileptic medicine since 2012. Many have improved significantly but many continue to have daily seizures and an estimated 200 children have died, mostly from drowning in rivers or falling into fires during seizures [12,16,17]. In order to stop children from getting hurt during

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episodes of confusion, some families have resorted to tying the affected child to a tree [16]. Local reports put the number of affected children at 3000, but some appear to be children with epilepsy [1,17]. While academic literature uses a biomedical discourse to describe nodding syndrome and its effects, locals link the syndrome to social issues [18]. Northern Uganda was the scene of a protracted low-intensity civil war between the Lord's Resistance Army (LRA) and the Ugandan army, which ran from 1986 to 2008 [19]. The LRA abducted as many as 30,000 children, and the conflict altered societal and family structures in the region [20] and resulted in around two million people residing in Internally Displaced Persons (IDP) camps. The crowded conditions of the camps and insufficient access to food and health care led to 1000 excess deaths per week in 2005 [21], and the lack of development during the conflict aggravated the north–south divisions which have existed since independence; the 2009/2010 Uganda national household survey estimated that, in the north, 68.9% live in huts as opposed to 1.8% in Western and 2.4% in Central Uganda [22]. Bukuluki et al. found that nodding syndrome is triggering a reversal in recovery from conflict by diminishing the farming productivity of parents with affected children and that stigma associated with the syndrome was disrupting social networks [23]. A commentary was based on quotes collected by an NGO. It is not declared how the focus groups were analyzed. The participants reportedly felt that food aid or chemicals from bombs caused nodding syndrome but also mentioned spiritual and religious beliefs [24]. Little research had been done, however, of how the children and their families have been affected and of how communities live with the changes brought about by nodding syndrome exists. In Uganda, nodding syndrome was first found in the districts of Pader and Kitgum where the majority of the affected children are still to be found and, therefore, these were the districts where this study was carried out. Nodding syndrome has since been confirmed in three other districts in Northern Uganda. Semistructured interviews and focus group discussions were conducted to examine the impact that nodding syndrome has had on affected children, their families, and communities. 2. Methods Participants for this study were identified by key informants and in treatment centers or during outreach clinics through purposive sampling and were asked to identify other possible participants in their area. All data collections were done in English, the official language of Uganda, and data were triangulated by using multiple methods (focus group discussions, interviews, and participant observations) with different data sources (parents, relatives, community members, and key informants). Triangulation enhances trustworthiness of qualitative research and increases the likelihood of rich descriptions [25]. Data were drawn from ten semistructured, individual qualitative interviews and five focus group interviews consisting of 4–6 individuals each. In total, 33 people were interviewed. An additional nine individuals acted as key informants for the researcher and included hospital staff, a local chief, and a local religious leader. Traditional healers were not interviewed as part of this study as data collected from key informants indicated that they were not significantly involved in the care of children with nodding syndrome (CWNSs). The caregivers were three mothers, three fathers, two older brothers, an older sister, and an aunt, all from different families. The interview guide focused on how it had affected the child, siblings, and parents the child's opportunities of participating in social activities, reactions received from neighbors, and understanding of causation. Participants in the interviews were the primary caregivers of children with nodding syndrome in the age range of 5–17 years, and all had lived in IDP camps during the insurgency. The focus groups consisted of two groups of relatives, two groups of primary school teachers, and one group of religious leaders representing the denominations Anglican, Catholicism, Pentecostal, Seventh Day Adventist, and Islam. The thematic interview

guide focused on their understanding of the disease, why they think it has occurred to the children, and how it has affected their communities. On average, the individual interviews lasted 101 min, and the focus group interviews lasted 122 min. Though saturation was reached at a fairly early stage, data collection was continued in order to ensure that findings were representative also of the next district. The investigator collected data for a period of ten weeks beginning in Kitgum district, adding field observations to the data trail including participant observation with the MoH Nodding Disease outreach clinics established in June 2012. All data collections were done between July and September 2012, in the districts of Pader and Kitgum, which are neighboring districts, situated about 443 km from the capital, with Kitgum bordering South Sudan. In 2013, the population of Pader district was estimated at 243,200 people, and the population of Kitgum was estimated at 257,600 people [26]. Both districts had a high number of IDP camps. Interviews were recorded and then transcribed verbatim by the investigator in preparation for analysis. The transcript comprised 263 pages of single space data and five pages of notes from field observations. All of the materials were analyzed through inductive thematic analysis in order to obtain an accurate reflection of the content without interference from theoretical interest or preconceptions of the researcher. Inductive analysis identifies themes directly from interview data instead of using interview data to test whether previously theorized themes are upheld (deductive analysis) [27]. Permission for this study was given by the Institutional Review Board of Gulu University and by the Ugandan National Council for Science and Technology. Participants were given oral as well as written descriptions of the study, and written consent was obtained. A transport refund was provided to all participants since most interviews were carried out in town centers. 3. Results

Themes 3.1 Manifestation of the syndrome 3.2. Burden of care 3.3. Attempts to contain the syndrome 3.4. Changes brought by the syndrome – Apathy – Disruption of education – Reduction in social support

3.1. Manifestation of the disease Although all children who are mentioned in this study were, at the time of interviews, on antiepileptic drugs (carbamazepine or sodium valproate), their symptoms were not fully controlled, and some continued to have many episodes of head nodding or seizures daily. This makes the children prone to accidents, making them even more dependent and distressing to people who see them: “Last week we had a child from our school, a child had fallen in fire and they took her to the hospital and her two arms has been cut from the hospital”. [Teacher A] It was observed that children with nodding syndrome often develop features of protruding teeth, salivating, stunting, and a slow gait and thus stand out as impaired. The children also exhibit mood changes and may be more sensitive or more challenging in their interaction with their family; the child may, for instance, demand more food, which constitutes a significant challenge in a culture where children

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do not normally defy their parents. A key informant said this was a sign that a spirit is talking, rather than the child. “This nodding disease has almost three categories: there are some very complicated; those children are getting thinner and thinner and thinner with a lot of wounds in their bodies. Others become almost lunatics and others stay as mine do. And some are very wild, some are very wild. Some are very polite”. [Father of a 13-year-old CWNS1] Some children have a preseizure aura that was described by several participants, along with their attempts to console the children, grounded in their beliefs of causation: “Anyway when such kind of thing [seizure] is going to happening, she says ‘Mum! It is coming!’ Sometimes she says like this. Then I will say to her ‘Satan go away!’ then she feels ok sometimes”. [Mother of a 5-year-old CWNS] Teachers and relatives mentioned secondary trauma but not just because there is illness in the community. The physical presentation of this illness sparks fears rooted in beliefs in witchcraft and other supernatural powers. Seizures, drooling of saliva, rolling eyes, postictal confusion, and auditive and visual hallucinations all resemble traditional notions of spirit possession. A father of a 13year-old girl described: “it will take some 20 min, that is when she will start to be alive”. To understand the fear or stigma associated with seizures, the strong negative feelings engendered in onlookers by seizures and the postictal state are key. “How it affects a person it looks like a Satan disease. I think I have seen one (…) the child started … it was just like dancing, from the classroom. And when he was coming out from the classroom he started bending the head like this [nods] and saliva was coming from the mouth. From that instant fellow pupils started moving away and the child was left inside alone”. [Teacher D] The child's own experience was rarely reflected upon. Often, the term helpless was used by the informant to explain that because of the child's impairment they are not a source of help, as would normally be expected from children in the community: “So the parents are tied up from work, all the time they have to be there at home. Their movements are restricted (…) And these children they are helpless — they don't help the family”. [Teacher I] The affected children and families were often described as ‘prisoners’ or ‘confined’ to their homes, and the community members repeatedly acknowledged how the disease constrained lives. “Socially these people are isolated (…) When the parents are going to the fields to dig, they lock the children in the houses. And these children are like prisoners”. [Religious leader, Pentecostal] In every interview, someone described how affected families fall deeper into poverty and food insecurity because they cannot go work in their gardens as before. This resembles the very real confinement participants described in IDP camps; being made idle by force was described to have caused alcoholism and mental illness, aftereffects that still have a grip on these communities.

1

CWNS = Child/children with nodding syndrome.

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3.2. Burden of care Children with nodding syndrome cannot be left alone because of the danger of falling into fire or wandering off, and caregivers feel tied to their homes at all times. No clear difference was found between the districts. Several parents described their children as being ‘unable to do anything’, but, when probed, it turned out that the child could bathe, get dressed, brush teeth, wash plates, and fetch water — on days when they had not had seizure. Hunger as well as the sight of food provoke seizures and bouts of nodding cause many to develop malnutrition. This reaction to food is difficult for observers to understand but could stem from a change in the child's arousal state [10]. Besides limiting the child, it also hinders the family from enjoying their meal together, in a culture where families traditionally eat from one plate. “Actually when you are sharing the food with this child, you can even get scared of eating”. [Cousin and brother to 4 CWNSs] Both parents and community members described epilepsy as a less serious condition compared with nodding syndrome because children with epilepsy have a shorter postictal phase and have milder cognitive and physical disabilities compared with children with nodding syndrome. Children with nodding syndrome improve on antiepileptic drugs, but as the relative mentioned above stated: “it cannot stop the attacks, can only reduce. Some can even fall six times in a day”. “A child with epilepsy can help the parents, can go dig, can also know how to keep himself clean, wash clothes and such, but a child with nodding disease is totally mentally confused, cannot even perform anything”. [Brother of 2 CWNSs] Managing a child with disability is a challenge for which none of the people interviewed felt emotionally or materially prepared for. Lack of access to boreholes, irregular medicine distributions, and inconsistent food aid to the children were mentioned as obstacles. A father explained that before the treatment centers were opened in 2012, he had to find USD 14 (equivalent to the price of 12 kg of rice) per month to buy medicine for his three affected children, so, for the first seven years of their illness, they were only getting medicine when he could afford it, after having fed his family. It is well documented that seizure disorders often go untreated in Africa because of local beliefs and the unavailability of antiepileptic medicine; in fact, a systematic review found that the treatment gap for epilepsy is over 75% in low-income countries [13]. 3.3. Attempts to contain disease Transmission was never mentioned directly when participants were asked what they thought caused nodding syndrome, but the fear that it might be transmitted was, nonetheless, palpable. In a parallel article entitled “You sit in fear: Understanding perceptions of nodding syndrome in postconflict Northern Uganda” [28], theories of causation and consequences to society are discussed. The majority of participants said that the fact that saliva is visible during seizures is a sign that it may contain something that is infectious to other children but not to adults, since the disease has only affected children. The saliva of patients with epilepsy was also believed to be infectious, and because the syndrome presents both as head nodding alone and as head nodding with seizures, it is not easily distinguished from epilepsy. “You know when these childrens are having this nodding attack you can see the saliva coming out from their mouth, and the belief is that maybe that saliva contains something that actually contains the germs that cause epilepsy”. [Brother to 2 CWNSs]

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Most participants expressed pluralistic health beliefs and subscribed to religious, animistic, and epidemiological explanations all at once, as seen in many parts of the world. All teachers requested health education in order to deal with their fears for their own health. “We have not been given knowledge how to handle those kids, of which some of the teachers also fear that they may contract the disease in the process of nursing (…) We do help, but with a lot of fear, because we don't know the mode of transmission”. [Teacher G] Some followed different infection control measures as a safeguard: “The only thing for us we can do, normally when a child falls this side maybe when the wind is blowing the other side, we make children move away from where the wind is going. Because we might be thinking it's going to infect them through air”. [Teacher F] The fear is both of a bacteria/virus infecting others through saliva or air, but also that the evil spirit that may have possessed the child could jump into the bystander: “There was a belief that if the child falls, then you cross where the head is pointing, automatically you will get infected by the bad spirit”. [Brother to 2 CWNSs] In the absence of truth, rumors prevail. It was clearly difficult for participants to reason comfortably between knowing that only children are at risk and the rumors in the media that adults have started nodding, but only teachers conveyed a daily fear for their own safety: “We are not sure whether adult gets it or not! Because the other statement that two adults got it is still in our minds (…) Almost all the radio stations mentioned that”. [Teacher H] Parents who themselves had a sick child felt safe helping other children during convulsions, e.g., in church when those who sat next to the child having seizures would get frightened. Because some families have many children with nodding syndrome, it is feared that the child who was affected first transmitted it to his siblings. Caregivers had, therefore, been advised by community members to follow certain infection control measures: “But at home I told the other children to stay together with him, but we don't share water. And food we don't share. He has his cup for him alone, and a plate for eating. And for sleeping, they sleep alone. Because they say if you sleep together, it will spread also”. [Mother of a 13-year-old CWNS] When asked how it might be transmitted, everyone stated saliva but did not fear the children's blood, urine, feces, or tears. In schools, pupils still sit in the same classroom, though, often, children with nodding syndrome sit at separate desks.

mentioned was, however, rarely consistent with the way transmission was thought to occur, e.g., the participant might state that chemicals from weapons were not still present in the air or water, although the saliva from the affected children might still be infectious, but only at the time of convulsing. Participants reflected that since no one knows the etiology, they just felt that they had to take the precaution of separating the children. 3.4. Changes brought by the disease 3.4.1. Apathy The world outside the affected communities took long to show an interest in the children, and it is worth considering if this could have translated into a local apathy or passivity too. This aunt who is herself caring for a 9-year-old girl with nodding syndrome described how many parents only started coming for medication after they were promised food supplements: “Other parents they are very careless of keeping those children, others refuse taking them to pick the drugs, so that's why they called parents telling them that ‘We are going to give something for children; the moment you come to pick the drugs you get some flour with beans’ (…). So parents they are now interested in going to pick those drugs. But those days, very careless, no one came …”. Because medicine has been unavailable in the first many years of their illness (one father reported the first case to the district in 1998; treatment centers opened in 2012), the children had more seizures and regressed faster developmentally, making parents lose hope in them regaining their abilities. The fact that there is no drug specifically for nodding syndrome also made some parents feel that there is no reason to try. “You know what is wrong with the parents of these nodding disease children? They don't mind about their children very much. Because there is no drug which can assist those children, they may say ‘After all what can I do? I have taken my child to the hospital, there is no drug; there is nothing I can do’. Then they can begin taking alcohol and doing other things. Yeah some of the parents they don't want even to buy just a clothes to a child. They say it's wasting the money because the child now cannot even do anything, there is no benefit which they are going to get from the child, you see”. [Brother to 4 CWNSs] Coupled with the stories of neglect, most caregivers mentioned positive caring patterns such as making an effort to buy multivitamins or provide meals for the child. A caregiver said “If you talk that ‘you will get cured’, like you give them good words, they get happy even. We really laugh with them inside the room” (brother to 13-year-old CWNS, 15-year-old CWNS, and 10-year-old child with epilepsy). The way this teacher describes the affected families was heard again and again: “In a family that is affected with nodding disease; there is no happiness (…) You may see as if everybody in the family are sick, but they are not sick, only that they are being disturbed because of the sickness”. [Teacher H]

“If you are known to have the disease, members will leave you apart when they are playing. They don't like you very much to be within a particular game because they fear that you may give to them that disease (…) So these children are normally isolated so because of that they feel neglected”. [Teacher B]

There was a depressed atmosphere in the nodding syndrome wards in both districts, which was not felt in other wards. During visiting hours, few people came, and caregivers seemed exhausted from the prospect of a long process where the child might improve but not recover:

In summary, participants believed that transmission was possible through a number of visible or invisible routes. The theory of causation

Outside the nodding ward, parents and children sit under the shade all day in the smoke from their fireplaces. They sit in dirt and food

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spills, and flies are on the children. Apathy. Their own veranda would never look like that. [Field note, 20.8.12, Kitgum]

3.4.2. Disruption of education All participants described how the children's education had been affected either as a result of the classmates' reactions or a failure to meet the teacher's expectations due to their cognitive loss. When a child with nodding syndrome was not able to pass exams or was having too many seizures at school, many parents opted to take the child out of school. If the child could not read or write, the social aspect of schooling was not seen as sufficiently beneficial in itself for the child to continue. In Ugandan public schools, children pay minor school fees and are required to buy a uniform, pens, notebooks, and toilet paper. No special needs education is offered in these villages, and the caregiver had to weigh the benefit of attending school against the financial costs and the danger of falling into a river on the way to school. “But she knows nothing! Even if you say one plus one she cannot answer. Even if you tell her one plus one is two and then you ask the same question … she is just like that. So she is just at home”. [Father of a 13-year-old CWNS] Healthy siblings have also had their education compromised by nodding syndrome. The financial burden on a widow with seven children made the following older brother lose out on completing his secondary education. He was now instead caring for a brother admitted in hospital with severe malnutrition. Antiepileptic medicine increases the child's appetite, which sometimes helps them gain weight but increases the burden of care. “This nodding disease is now making me not to go to school; it is now affecting my life (…) The reason why I dropped out of school is when I go to school no one can care for those nodding people. Then when I go to school no one can pay my school fees (…) we use the money outside there, the money which is needed to buy food for these nodding people (…) in one day they can eat food four times”. [Brother to 11-year-old, 14-year-old, and 16-year-old CWNSs]

3.4.3. Reduction in social support Besides the change in the tradition of eating from one plate, the fear of transmission has translated into expressions of stigma and discrimination from the surrounding community. To the affected children, this meant being called ‘lucluc’ by other children (the local name for the disease). Most caregivers said that there had been a reduction in the number of visitors to their homes and that no one will drink, eat, or sleep over anymore. “And even in the village, some people if they know you have a nodding disease child in your home they don't like you. You are supposed to stay in your home yourself, with your family. If they reach your home, even to use water like this, they don't use [points at the glass of water]. They say ‘Aah thank you I am very fine’. Because they are feared. Even their children don't play together with mine. It is a very difficult disease”. [Mother of a 13-year-old CWNS] The widow quoted above, who is HIV positive, said she is no longer free to move back to her district of origin, where she could be cared for by her family should she fall sick, due to the stigma associated with nodding syndrome. The confinement experienced in IDP camps could, thus, take on new forms for the people of Northern Uganda:

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“I will go and visit only, not to go and stay. Because these 5 children they are supposed to stay here and if you take them there and the disease start from there, people will say ‘Aah you are not from here, you go back’. So going this way and this way it is not good. They are supposed to stay here”. The stigma is an additional burden on the parent because it results in reduced social support, as described in this conversation with a brother who had also seen a reduction in visitors: “They are scared. They can come around there. They just come around, not going inside. [I: How does your mother feel about that?] My mother she was not very happy. She was not very happy. Because of seeing their children has nodding disease (…) She say that she can take those patients with nodding disease, she go to collect them and throw them in the river”. [Brother to 11-year-old, 14-year-old, and 16-year-old CWNSs] The mother talks of dumping her affected children in the river. The son said that she often beats the affected children and cannot understand why they fail to learn from it. Some participants mentioned divorce as a change brought by the disease; that mothers exhausted from the burden of care leave their husbands and their children, who culturally belong to the patriarch lineage. 4. Discussion 4.1. Discussion of method The researcher acquired an intimate knowledge of the material by carrying out the data collection, transcription, and coding herself. The researcher was both an insider and an outsider simultaneously, and her 5-year work experience in Uganda meant that she was accustomed to local expressions, the culture, and getting around on her own. The researcher acted as an observer when visiting homes and as an active participant during outreach clinics. Participating and living under local conditions may help in increasing the understanding of the lived experiences of the people investigated and in obtaining rich descriptions [25]. It is, however, still relevant to consider an outsider bias, as the author is not a native member of the community interviewed. The author's choice of carrying out the interviews in English herself unavoidably introduced a selection bias; had they been done in the local language Luo, people with no primary education at all could have been included. Besides being peasant farmers, five participants were also unpaid volunteer health team members (people with no medical education who are asked to, e.g., distribute medicine) and had attended an information meeting about nodding syndrome. 4.2. Discussion of results Nodding syndrome has brought suffering to all levels of the community in Northern Uganda, and all participants described the constant confrontation with a painful disease. That the burden of care puts a strain on the caregiver's possibility of carrying out subsistence farming is echoed in the study that documented that the disease poses a threat to human security and economic development [23]. In relation to patterns of care, there were signs of apathy — but as described, nodding syndrome struck in a region already depleted of resources. It is to be expected that there were signs of limited caring or coping capacity because the caregivers were multiply traumatized and living below the poverty line. Social roles had changed because of war, and now they are changing again; children are being tied to trees [16], and parents become long-term carers for their adolescents with mental retardation who, under normal circumstances, would be ready to leave home. Some parents abandon their children and spouses, thinking that there is no hope for support in the future.

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The suffering is collective, and solutions to care could be shared too, but except for a demonstration when food supplements had been delayed, no one mentioned initiatives that caregivers had undertaken together to improve the situation for their children or themselves, e.g., taking turns to look after the children in one home while the other parents go work in their gardens. A parent explained that some affected children have become aggressive or difficult to handle and, therefore, cannot be left with neighbors. A group of parents in Kitgum have now donated a piece of their land and requested the government to build an institution for the children where they should stay permanently. Helplessness was also a reflection of actual powerlessness; parents have no capacity to act, and there is no one to call upon for support. Not having options to act in a situation to get help or information or be heard increases a sense and a lived experience of helplessness. In IDP camps, rates of PTSD were as high as 74.3%, and rates of depression were as high as 67% [29], and treatment for this or for alcoholism is not generally available. As van Bemmel states, nodding syndrome represents a model of social disharmony linked to the ‘trauma of past conflict, to poverty, and to (region-bound) frustration over neglect’ [18]. The fact that a participant in this study narrated that his mother sometimes threatens to throw her three affected children in the river indicates the depth of hopelessness and depression. Parents who have several children affected by nodding syndrome are grieving for more than their children's illness; it is a loss of pride and social value. The burden of care brings a reduction in economic activities, which will affect entire families. It is vital to look into how parents cope with this loss of lineage and security and adjust to the socioeconomic changes brought by nodding syndrome. Meaning-making is continual, complex, and, often, contradictory, especially since much about nodding syndrome is unknown. Participants who listed a curse and spiritual possession as possible causes also described protecting children from transmission through saliva or air. In the present article, it is clear that one of the consequences of a delay in recognizing the existence of a disease, disseminating results from investigations, and determining etiology is that fear of transmission has been permitted to continue for long. The community believes that the saliva of people with seizure disorders possesses infectious powers that tears, urine, and blood do not have. This fear of transmission influenced patterns of care; the separation of children was also encountered by Mitchell et al. [24]. That nodding syndrome affects the education system is consistent with the finding that children with nodding syndrome are often absent from school [23]. The present study additionally found that the education of healthy siblings is being hampered by the burden of care and financial losses brought about by nodding syndrome. This study, moreover, found that one parent did not feel she was allowed to move with her children to another district because she might get blamed if nodding syndrome later appears there — this bears resemblance to the confinement that children and families affected by nodding syndrome experience when trying to perform their daily tasks and the confinement described in IDP camps. Social support is an often employed coping mechanism for caregivers of children with illness [30] but is reduced due to fear of transmission. The international focus on the etiology of nodding syndrome is long awaited by the affected population, but a wider campaign to address the challenges faced by the children and their caregivers is warranted. 4.3. Policy implications The children affected by nodding syndrome were more feared on the days they had seizures. Their acceptance among other children and their position in their families were greatly compromised whenever they had seizures. The more severe a seizure, the longer the postictal state, often followed by fatigue for one or two days. This

significantly affects their quality of life. The need for physiotherapy, occupational therapy, and special needs education is obvious, but, first of all, there is a critical need for a consistent distribution of medicine to be arranged in order to stop further setbacks in the children's developmental milestones. 5. Conclusion The quotes in this study describe the experience of being victims of an emerging disease that has affected children, families, and communities. The loss involved with nodding syndrome is seen as a continuation of the confinement and trauma caused by war, and a good regimen of medication is not the whole answer. A coordinated medical and social intervention aimed at lessening the burden of nodding syndrome among affected children, their families, and their communities could help reduce the collective suffering. Acknowledgments The author deeply appreciates contributions from participants and from supervisors Hannah Bradby and Beth Maina Ahlberg of the Department of International Maternal and Child Health, Uppsala University. Also, the author would like to thank SIDA for providing a minor field studies research grant. Conflict of interest The author has no conflict of interest to declare. References [1] Iyengar PJ, Wamala J, Ratto J, Blanton C, Malimbo M, Lukwago L, et al. Prevalence of nodding syndrome — Uganda, 2012–2013. MMWR Morb Mortal Wkly Rep 2014; 63(28):603–6. [2] Winkler AS, Friedrich K, Konig R, Meindl M, Helbok R, Unterberger I, et al. The head nodding syndrome — clinical classification and possible causes. Epilepsia 2008; 49(12):2008–15. [3] Winkler AS, Friedrich K, Meindl M, Kidunda A, Nassri A, Jilek-Aall L, et al. Clinical characteristics of people with head nodding in southern Tanzania. Trop Doct 2010; 40(3):173–5. [4] Winkler AS, Wallner B, Friedrich K, Pfausler B, Unterberger I, Matuja W, et al. A longitudinal study on nodding syndrome — a new African epilepsy disorder. Epilepsia 2014;55(1):86–93. [5] van der Waals FW, Goudsmit J, Gajdusek DC. See-ee: clinical characteristics of highly prevalent seizure disorders in the Gbawein and Wroughbarh clan region of Grand Bassa County, Liberia. Neuroepidemiology 1983;2(1–2):35–44. [6] Spencer PS, Vandemaele K, Richer M, Palmer VS, Chungong S, Anker M, et al. Nodding syndrome in Mundri county, South Sudan: environmental, nutritional and infectious factors. Afr Health Sci 2013;13(2):183–204. [7] Tumwine JK, Vandemaele K, Chungong S, Richer M, Anker M, Ayana Y, et al. Clinical and epidemiologic characteristics of nodding syndrome in Mundri county, southern Sudan. Afr Health Sci 2012;12(3):242–8. [8] Nyungura JL, Akim T, Lako A, Gordon A, Lejeng L, William G. Investigation into the Nodding syndrome in Witto Payam, Western Equatoria State in 2010. S Sudan Med J 2011;4(1):3–6. [9] Idro R, Opoka RO, Aanyu HT, Kakooza-Mwesige A, Piloya-Were T, Namusoke H, et al. Nodding syndrome in Ugandan children — clinical features, brain imaging and complications: a case series. BMJ Open 2013;3(5). [10] Sejvar JJ, Kakooza AM, Foltz JL, Makumbi I, Atai-Omoruto AD, Malimbo M, et al. Clinical, neurological, and electrophysiological features of nodding syndrome in Kitgum, Uganda: an observational case series. Lancet Neurol 2013;12(2):166–74. [11] Winkler AS, Friedrich K, Velicheti S, Dharsee J, Konig R, Nassri A, et al. MRI findings in people with epilepsy and nodding syndrome in an area endemic for onchocerciasis: an observational study. Afr Health Sci 2013;13(2):529–40. [12] Dowell SF, Sejvar JJ, Riek L, Vandemaele KA, Lamunu M, Kuesel AC, et al. Nodding syndrome. Emerg Infect Dis 2013;19(9):1374–84. [13] Konig R, Nassri A, Meindl M, Matuja W, Kidunda AR, Siegmund V, et al. The role of Onchocerca volvulus in the development of epilepsy in a rural area of Tanzania. Parasitology 2010;137(10):1559–68. [14] Pion SD, Kaiser C, Boutros-Toni F, Cournil A, Taylor MM, Meredith SE, et al. Epilepsy in onchocerciasis endemic areas: systematic review and meta-analysis of populationbased surveys. PLoS Negl Trop Dis 2009;3(6):e461. [15] Foltz JL, Makumbi I, Sejvar JJ, Malimbo M, Ndyomugyenyi R, Atai-Omoruto AD, et al. An epidemiologic investigation of potential risk factors for nodding syndrome in Kitgum District, Uganda. PLoS One 2013;8(6):e66419. [16] Echwalu E. Uganda: nodding horror — 12-year-old victim is tied to a tree for 13 hours everyday. The observer; 2012 [15.02.12].

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