Global Leadership Training Programme in Africa 20162014
Activity Report of Field Research
Anthropological Study on the Socio-economic Situations of Nodding Syndrome Patientsand Their Families in Northern Uganda
Shoko Suzuki
Abstract
Nodding Syndrome (NS), unknown epileptic disease, has been one of serious burdens of eastern
Africa. NS is an unexplained disease which affects mostly children between 5 and 15 years old. Thisdisease has so far been reported from southern part of South Sudan, northern Uganda and Tanzania. In
spite of extensive medical investigations, its cause remains still unknown.1
Acholi land in northern Uganda is one of the areas where NS patients are concentrated. The
effect of the disease on patients’ families and communities can be devastating because previously healthy
young children drop out of school and lose the ability to eat. Constant oversight of the patients is requiredsince they might fall into a cooking fire, wander off, and drown.2 This disease has been a burden for
individuals and communities in northern Uganda.
The ultimate goal of this research is to clarify everyday-life conditions of NS patients and theirfamily members, and propose an appropriate care-system for them. This field research aimed to describesocial and economic situations of NS patients, and explore how local people recognized and coped with
NS. From anthropological and sociological perspectives, I examined what kind of attitudes local people
had towards NS patients and their family members.
Through this field research, the following three points were revealed;
1) Patients were suffering from various barriers, which were not only epileptic symptoms but also otherchallenges, including communication disorders and violence to others.
2) Local people tended to suspect NS of an infectious disease. Caregivers used different dishes whenserving food to its patients. In other cases, people believed that NS was the aftermath of the conflict
involving the use of bombs, and caused by poisoned food provided in the IDP (Internally Displaced
Persons) camps. Most patients had experiences of being isolated and bullied by other children atschool.
3) Caregivers believed that biomedical care from health centers was the only effective treatment.
However, transportation cost for hospital visit had been a difficulty in access to the biomedical
treatment.
Caregivers were facing the challenges of the lack of knowledge in appropriate care since noetiology of this disease was developed. Meanwhile, neighbors’ involvement in watching over NS patientswere observed. This practice is hoped to be promoted, so that the entire community could perceive andunderstand the special needs of the families of the patients.
1

Colebunders, R., A. Hendy, M. Nanyunja, J. F. Wamala, and M. van Oijen, 2014. “Nodding syndrome: A new hypothesis andnew direction for research.” International Journal of Infectious Diseases, 27: 74-77.
2
Dowell, S. F., J. J. Sejvar, L. Riek, K. A. H. Vandemaele, M. Lamunu, A. C. Kuesel, E. Schmutzhard, W. Matuja, S. Bunga, J. Foltz,
T. B. Nutman, A. S. Winkler, and A. K. Mbonye, 2013. “Noddig syndrome.” Emerging Infectious Diseases, 19 (9): 1375-1384.

要旨
昨今、さまざまな疾病がアフリカ諸国の人々を脅かしているが、そのひとつに、東アフリカの一部で蔓延しているうなづき症候群がある。うなづき症候群は、主として 5～15 歳の子どもにみられる原因不1

明の神経系の病気である 。この病気を発症した患者は、頭を縦に振る症状やけいれん発作をおこし、症状が進行すると死に至る場合もある。近年、症例数が増加するに従って、その原因の究明を目的とした研究報告が相次いでいるが、未だに明確な病因は特定されておらず、治療やケアの方法も確立されていない3。ウガンダ政府や国際 NGO は、この病気の患者の支援を行っているが、それがどれだけ患者のもとに届いており、いかなる効果をあげているのかに関する報告もほとんどない。この原因不明の疾病について現地住民は、1980 年代半ばから 20 年間も続いたウガンダ北部紛争の時代に使われた化学薬品や難民キャンプで配給された食品のほか、現在も調理や水浴びに使っている河川の水など、さまざまな病因を疑っている。また、病気の感染経路も解明されていないため、日常的に不安を感じながらの生活を強3

いられている 。
本研究の最終的な目的は、ウガンダ北部において蔓延しているうなづき症候群の患者とその家族が直面している社会的・経済的な困難を明らかにし、同時に、人々はそれにどのように対処しているのかを、
とくに家族や近隣住民による自発的なケアや相互扶助に着目しつつ解明することである。本調査では、各世帯の構成員や世帯間の関係などに関する基本的な情報がわかっている村落において、以下の 3 項目についてデータ収集を行い、一定のデータを得ることができた。
（１）うなづき症候群の患者の病状と生活実態
本調査では、インタビューと参与観察により、患者がいかなる日常生活を送っているのかを検討した。
その結果、患者たちの症状は一般的に悪化の一途をたどり、てんかんなど神経系の症状以外にも、患者のコミュニケーション障害や暴力行為、徘徊などがみられ、本人のみならず周囲にも悪影響を及ぼしていることが明らかになった。
（２）うなづき症候群という病気に関する地域住民の認識と対処、および患者とその家族に対する地域
住民の対応
今回の調査では、うなづき症候群という病気に対して感染性をもっていると疑っている多くの住民がおり、食器を分けて使用する例もひんぱんにみられた。いっぽう、紛争の際につかわれた火薬や難民キャンプで配給された食事などを原因として疑う例もみられた。うなづき症候群患者は、主として 5～15
歳の子どもであるが、学校や遊びの場で同年代の子どもから無視・排斥をされる経験をもっていた患者が多かった。病気の感染を恐れることによる無視・排斥は観察されなかった。
（３）患者とその家族が直面する経済的課題
患者にとって、ヘルスセンターでの抗てんかん薬の処方はもっとも有力な問題解決手段となっている。
しかし、通院にかかる交通コストが保護者にとっての大きな負担となっている。
今回の調査では、病気の原因が分からない不安を抱え込み、ケアに対する知識不足を嘆いている保護者が多くみられた。いっぽう、地域住民が近所に住む患者を気遣い、見守るような行為をしていることが観察できた。地域住民の協力的な姿勢を無駄にせず、コミュニティ全体で患者や患者家族のニーズを共有できる仕組みを創出し、情報交換の場を設けることができれば、患者の安全の確保や保護者の負担の軽減を実現できるのではないだろうか。

3

駒澤大佐・齋藤貴志、2014「Nodding Syndrome に関する研究動向：症状・原因・治療」『JANES ニュースレター』
No.21: 7-12.
佐藤靖明、2014「東アフリカにおけるてんか性脳症『頷き症候群（Nodding syndrome）』に対する学際的ネットワー
クの設立」『JANES ニュースレター』No.21: 2-6.

Research Activity
1.

Introduction
Nodding Syndrome (NS) is an unexplained disease which affects mostly children between 5 and15 years old. This disease has so far been reported from southern part of South Sudan, northern Uganda
and Tanzania. In spite of extensive medical investigations, its cause remains still unknown.1 Although NS
is only observed in Tanzania, Uganda and South Sudan, it is likely to be more widespread than previously
thought. 4 This disease is considered as a part of the spectrum of onchocerciasis-associated epileptic
disorders, causes varying degrees of mental retardation in growing. In some cases, it occurs considerable
growth stunting and failure to develop secondary sexual characteristics.5
Acholi land in northern Uganda is one of the areas where NS patients are concentrated.
Buchmann (2014) claims that “Nodding syndrome, a disabling epidemic epileptic encephalopathy, hasaffected an estimated 1,834 children in northern Uganda, with reports of as many as 3,000.” The effect ofthe disease on patients’ families and communities can be devastating because previously healthy young
children drop out of school and lose the ability to eat. Constant oversight of the patients is required since
they might fall into a cooking fire, wander off, and drown.2
The difficulties NS patients are facing are not only health concerns. NS patients tend to dependon traditional medicine prescribed by local healers, instead of purchasing modern medicines from LC-III
health centers. One of the reasons is economic situation of the patients and their families. Most people
depend on public transportation for hospital visit. They cannot afford to go to health centers freely, and it
is assumed that this is a key factor resorting to the use of traditional medicines. 6 Yet, the details of
economic conditions of NS patients and their families are not necessarily unveiled.
Some caregivers were reported to sometimes neglect the health needs, feeding and personal
hygiene of their children. These children therefore tend to suffer from other hidden unintended torments
and distresses directly related to their NS.7 However, there is no full investigation of what kind of cares
NS patients are receiving from their families and community members.
The burdens on NS patients and their families are not just the suffering of unknown disease as
such. Since no etiology of NS is identified, rumors as well as bad reputations on NS patients and theirfamilies spread over Acholi land. There is an assumption that NS has something to do with the civil war
occurred in the past two decades. Some attribute the cause of NS to foods distributed in wartime, sayingthat they led to chemical poisoning. Other believe that NS was caused by religious and spiritual reasons.8

4

Colebunders, R., A. Hendy, M. Nanyunja, J. F. Wamala, and M. van Oijen, 2016. “Nodding Syndrome in Onchocerciasis Endemic
Areas.” Trends in Parasitology, 32-8: 581
5
Wamala, J.F., M. Malimbo, F. Tepage, L. Lukwago, C.L. Okot, R.O. Canon, A. Laudisoit and R. Colebunders, 2015. “Nodding
Syndrome May Be Only the Ears of the Hippo.” PLOS Neglected Tropical Diseases, <http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4535877/> (accessed 5 Sep 2016).
6
Mwaka, A.D., E.S. Okello and C.G. Orach, 2014. “Barriers to biomedical care and use of traditional medicines for treatment ofcervical cancer: an exploratory qualitative study in northern Uganda.” European Journal of Cancer Care, 24:503-513
7Mwaka, A.D, M.M.G. Orac, E. M. Were, G. Lyratzopoulos, H. Wabinga and M. Roland MD, 2015. “Awareness of cervical cancer
risk factors andsymptoms: cross-sectional community survey inpost-conflict northern Uganda.” Health expectations: an international journal of public participation in health care and healthpolicy, 19(4): 1-13
8
Mitchell, B. K., J. Kornfeld, J. Adiama, A. Mugenyi, E. Schmutzhard, E. Ovuga, J. Kamstra, and A. S. Winkler, 2015. “Nodding
syndrome in northern Uganda: Overview and community perspectives.” Epilepsy & Behavior, 26-1: 22-24

My field trip to Acholi land was aimed at revealing how local people were conceiving and copingwith NS, with particular interest in their ethnographical background. Participant observations andinterviews were conducted to give detailed description of NS symptoms.
2.

Figure 1. Map of Uganda

Study Area
This survey was conducted in Gulu andKitgum Districts, Uganda where NS patients wereseen. Uganda is located in eastern Africa surroundedby Tanzania, Kenya, D.R. Congo, Rwanda, and South
Sudan. Its total population is 39,032,383 in 2015.9
Gulu and Kitgum are located in northern partof Uganda, and the majority of their population belong
to the ethnic group called Acholi.
Participant observation and interviews wereconducted in a village located approximately 60km
away from Gulu town. Health centers in Kitgum andKitgum government hospital were chosen forcollecting data on medical treatment and services
supply.
This area of northern Uganda was affected by
the conflict occurred from 1986 to 2008. Many people
experienced and suffered from atrocities of the antigovernment Lord’s Resistance Army during the war.
Most people in the surveyed village spent their time
on being in Acholi land during the war. Some have anexperience of being abducted and forced to becomechild soldiers.
3.

Methodology
This research employed the following three study methods.
(1)
Literature review:
This research drew mainly on an anthropological approach. A range of the relevant literatures
enabled me to fully understand NS and analyze the collected data from a multifaceted perspective. To
illustrate the social context of the study area, these literatures were not only cited for summarizing
medical elucidations, but also utilized for understanding the ethnographic background of local people.
(2)
Interviews with NS patients / their family members / local community members / NGOs / otherstakeholders
This research focused on NS patients, their families, their communities, and organizations
supporting them. The data collection was carried out mainly in English, while I made maximum efforts tounderstand their local language, Acholi-Luo.

9

World Bank, 2016. “Population, total data”. <http://data.worldbank.org/country/uganda> (Viewed on Dec 26, 2016).

Informants were NS patients, their family members, local community members, teachers, andcommunity leaders. The interviews with them were designed to explore how NS patients’ families andlocal members perceived NS, and how they understood and dealt with NS patients.
(3)
Participatory observation: everyday-life conditions of NS patients / their care system / their social
relationships with local community members.
Data collected through a series of observations of the patients and local community members
included their everyday conversations and activities. This allowed me to clarify the social values of local
people on NS. During this field survey, I stayed with three patients with different genders and different
ages.
4.

Research Findings
In this field survey, I investigated socio-economic situations of NS patients and their families.
The following three points were revealed.
(1)Symptoms of NS patients and their daily lives:
There are previous studies reporting various symptoms of NS patients; still the details are
unknown. The interviews with NS patients and direct observations of their behaviors revealed that thefrequency of their symptoms varied according to seasons, weathers, and situations. There were a wide
variety of symptoms for the patients. While epileptic seizures were major symptoms as previously
reported, the patients were suffering from wandering as well. Caregivers prevented the patients fromdrowning in water by tying them with ropes.
In general, the majority of patients who have serious epileptic symptoms show aggressive
behaviors when they think that their conditions are not well. The accounts of some informants indicatesthat there is a similar tendency. When their symptoms are serious, NS patients tend to throw stones, andslap and hit others regardless of their wills. Many patients have difficulties of communicating with otherfamily members and friends.
(2)
Local people’s recognition of NS, their attitudes towards NS patients and their families, andcoping strategies to NS:
Usually, NS children dropped out of school andwere kept at home. The patients who had only mild
symptoms did heavy every chore, including cultivating crops
and collecting firewood, while the risk of wandering did notallow the patients with severe symptoms to go to their farms.
Wandering was recognized as a significant issue forcaregivers of NS patients since it had the danger ofdrowning in water and being involved in accidents.
Caregivers always needed to pay attention to the patients
and worry about their safety.
The interviewees tended to use different dishes when
Figure 2. Patients spending time with theirserving foods to NS patients. According to some informants,
close relatives
doctors and nurses of local health centers gave them advice
that they must use dishes separately. Local people were alreadyinformed that NS was not an infectious disease, but most of them were skeptical about this general
information. The habit of using different dishes did not echo any intention of isolating the patients, but
their willingness of protecting healthy children.
In the interviews, the patients stressed that they experienced cruel bullying from formerclassmates and neighbors. They tended to be isolated from groups at school, and abused and teased byother children. They spent most of their time on living with their family members and close relatives, sothat they would be understood properly and protected.
Most caregivers shared information on the patients’ conditions with community members,
especially close neighbors. Information on symptoms as well as characters of each individual patient wasshared when community members gathered for events of their social networks, like meetings of money
saving groups. This implies that people excluded from such networks and gatherings do not have any
chance to obtain this kind of information. Neighbors’ attitudes towards NS patients seemed corporative.
The close neighbors always monitored the patients wandering in the bush, and tried to prevent them fromgoing to dangerous areas.
Caregivers criticized that adequate knowledge of proper care for NS patients has not been
accumulated yet; in fact, people in this area never experienced this epileptic disease until a few years ago.
Also, many interviewees referred to the sense of helplessness caused by the lack of shared information on
NS.
(3)

Economic situations of NS patients and their families:
The majority of the patients were receiving medication from doctors at local health centers.
Examination and medication offered by these centers are free in Uganda, but voices of the interviewees
indicate that local people have difficulty in securing cost for public transportation from a village to thecenters. In the surveyed village, any local health center was not located within working distance. The
village was located 9 km away from Health Centre 3, which was the nearest public health center for them.
Local people use highway buses and public taxies to go to health centers, but they do not have frequent
services. Some caregivers who could not afford to use such public transportations made their patients go
to this health center by foot. I frequently observed that the health center was out of service because of theabsence of doctors and nurses. When this happened, people needed to visit another health center located20km away from it.
In Gulu town, there was a regional referral hospital into which patients with serious symptoms,
including being violent and wandering, were allowed to be admitted. However, public hospitals in
Uganda did not provide patients with meals, clothing and any other additional service. In other words,
caregivers should take care of them during the whole hospital stay. This discouraged people fully
depending on agriculture in subsistence from getting advanced treatments at public hospitals. Long
waiting time and unfamiliar processes at hospitals were also major hindrances to the utilization of theirservices.
The interviews revealed that NS patients did not necessarily rely upon the traditional medicines.
Some caregivers obtained advice from ajuwaka (traditional healer in Acholi land), but most of them failed
to find any solution. It was commonly recognized that ajuwaka was no longer effective for NS patients.
Some interviewees had some experiences of using local herbs for epileptic seizures, but most local people,
including herbalists, believed that these herbs were not necessarily effective for NS patients. Therefore,
biomedical care offered by health centers was the only treatment for the patients.

5.
Discussion
5-1. Methodology
Through the interviews and observations, I realized that symptoms of NS patients would be
affected by the amount and type of daily food. The fieldwork was conducted during the rainy season inwhich plenty of food were available. What people eat in both quantity and quality is not necessarily
constant throughout the year; there are dishes of different kinds in the dry season. This indicates thatconditions of NS patients are likely to depend on seasonally varying food intake. It would be explored byconducting a further field survey in different seasons.
5-2. Research Findings
Many caregivers had difficulty in seeking adequate biomedical care. Caregivers stated that they
were always afraid of NS symptoms which usually became progressively worse. More and more, the lackof etiology was encouraging their helplessness. Through this field survey, caregivers referred to a sense ofanxiety arising from the uncertainty of treatments which have been given to NS patients. These
helplessness and uncertainty led to a drop in their motivation for giving adequate care to the patients. The
lack of fundamental education on remedy for caregivers diminished therapeutic ideas as well as social
integration which could reduce their concerns and stigma.
Meanwhile, most households with affected children were suffering from economic vulnerability.
Transportation and hospitalization costs discouraged caregivers from seeking adequate treatments fromdoctors. This issue regarding the cost for biomedical treatment is considered as a threat to the constructive
lives of families with NS patients.
6.

Conclusion
My field survey revealed that NS patients’ dependence on caregivers and its various symptoms
were the key factors from which they suffered. The absence of etiology resulted in the lowering of theirmotivation to give better care for the patients. Most caregivers were worried about the uncertainty of theirown treatments, thinking that these might be worsening NS symptoms.
Some problems regarding communication between the patients and others could be solved within
their community. Neighbors are hoped to be more informed of NS, so that the whole community could
create an opportunity to understand and share the special needs of its patients. It is considered that thisreduces the burden on NS patients as well as caregivers.
Reflection to the GLTP in Africa
This field survey was my first experience to livein Africa. I spent most of times with local people. I
needed to learn to communicate with them in their local
language, and I spent most of my free time with children
learning their languages and plays. These experiences
broadened my perspectives and recognition of diversity
and culture. This fieldwork was also a great opportunity
to gain skills for becoming a good anthropologist.
There were challenges especially on security
because some patients sometime became aggressive
when their symptoms were severe. However, I obtained
Figure 3. Traditional style of storytelling in Acholi
land called “wan-oo”

a valuable experience with safety through participating to the GLTP in Africa thanks to critical advices
and encouragement from GLTP staff members.
Also, making presentation at GLTP office was a wonderful chance to spread information on thisunknown disease to other researchers. At the same time, I gained precious opportunities to know issues inAfrica through learning from other GLTP members. These experiences that I gained through this program
would contribute to me becoming a good researcher. I hope Africa will get focused more from researchers.
I also hope that I will have an unparalleled opportunity to conduct field survey again.
7.

Acknowledgements
Firstly, I would like to express my sincere gratitude to GLTP staff members who gave me
continuous support before and after my field survey in Uganda. Advices given by Ms. Kana Miyamoto, a
GLTP staff member, was a great help during my stay in rural area with limited resources. Through Global
Leadership Training Programme in Africa, I gained a wide range of field experience.
Also, I would like to express my sincere gratitude to Professor Edward Kirumira, the Principal of
the College of Humanities and Social Sciences, Makerere University, who gave me all the necessary
assistances to conduct research in Uganda. He also gave me advanced and constructive ideas for my fieldsurvey.
Finally, I am deeply grateful to every research participants in my research including my research
assistant Omony Patrick, nodding syndrome patients, caregivers, village residents, and hospital staff
members.
8.
References
Buchmann, K., 2014. “‘You sit in fear’: Understanding perceptions of nodding syndrome in post-conflict
northern Uganda.” Global Health Action 7, <http://dx.doi.org/10.3402/gha.b7.25069> (accessed 9 May
2016).
Colebunders, R., A. Hendy, M. Nanyunja, J. F. Wamala, and M. van Oijen, 2016. “Nodding syndrome inonchocerciasis endemic areas.” Trends in Parasitology, 32-8: 581
Colebunders, R., A. Hendy, M. Nanyunja, J. F. Wamala, and M. van Oijen, 2014. “Nodding syndrome: A
new hypothesis and new direction for research.” International Journal of Infectious Diseases, 27: 74-77.
Dowell, S. F., J. J. Sejvar, L. Riek, K. A. H. Vandemaele, M. Lamunu, A. C. Kuesel, E. Schmutzhard, W.
Matuja, S. Bunga, J. Foltz, T. B. Nutman, A. S. Winkler, and A. K. Mbonye, 2013. “Noddig syndrome.”
Emerging Infectious Diseases, 19 (9): 1375-1384.
Mitchell, B. K., J. Kornfeld, J. Adiama, A. Mugenyi, E. Schmutzhard, E. Ovuga, J. Kamstra, and A. S.
Winkler, 2015. “Nodding syndrome in northern Uganda: Overview and community perspectives.”
Epilepsy & Behavior, 26-1: 22-24
Mwaka, A.D., E.S. Okello and C.G. Orach, 2014. “Barriers to biomedical care and use of traditional
medicines for treatment of cervical cancer: An exploratory qualitative study in northern Uganda.”
European Journal of Cancer Care, 24:503-513

Mwaka, A.D, M.M.G. Orac, E. M. Were, G. Lyratzopoulos, H. Wabinga and M. Roland MD, 2015.
“Awareness of cervical cancer risk factors and symptoms: Cross-sectional community survey in postconflict northern Uganda.” Health Expectations: An International Journal of Public Participation in
Health Care and Health Policy, 19(4): 1-13
Wamala, J.F., M. Malimbo, F. Tepage, L. Lukwago, C.L. Okot, R.O. Canon, A. Laudisoit and R.
Colebunders, 2015. “Nodding Syndrome May Be Only the Ears of the Hippo.” PLOS Neglected Tropical
Diseases, < http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4535877/> (accessed 5 Sep 2016).
World Bank, 2016. “Population, total data”. <http://data.worldbank.org/country/uganda> (Viewed on Dec
26, 2016).

9.

Appendix

CONSENT TO PARTICIPATE INRESEARCH ON NODDING SYNDROME PATIENTS
Purpose of this Research
My research aims to describe everyday-life conditions of Nodding Syndrome patients, and to explore how
local people recognize and cope with NS, and what kind of attitudes local people have to the patients of
NS and their family members, from the anthological and sociological perspectives.
Methodology
I will investigate how local people recognize causes and contagiousness of Nodding Syndrome byconducting intensive interviews to the NS patients, their family members, community members, and staff
of local NGOs, which are extending assistance to the NS patients. Group discussions of community
members will be conducted as well.
Protecting the Privacy of Participants
I utilize personal information only for academic purposes. All data collected in this research will not
identify any individuals. I never allow any data to be released outside this research project.
Rights of Research ParticipantsYour participation in this research is completely voluntary. It is up to you whether you participate ornot. If you decide to participate, you are free to withdraw your consent and discontinue participation at
any time.

If you wish to ask questions, please contact me by telephone or email.
Shoko Suzuki
Email: suzuki.shoko.67v@st.kyoto-u.ac.jp
INTERVIEWS GUIDELINE
Following questions will be asked in interviews:
 Understanding General Information of Individuals
・What is your name?
・How old are you?
・What is your job?
・What is your academic background?
・Are you a single or married?
・Do you have any siblings?
・How many children do you have?
 About Nodding Syndrome
1)
For Nodding Syndrome Patients・How old were you when your symptoms started?

・When is the symptom appear in a day?
・Have you had any dangerous experience when you suffered from NS?
・Are you taking any medicines or herbs?
・Do you feel better when you take medicines?
・Do you go to any clinics? (Have you?)
・How have you know this clinic?
・Why do you stop going to go to clinic?
・Do you have any friends who are nodding syndrome patient?
・Does your symptom seem better when you pray for your god?
・Have you ever visited ajwaka to consult Nodding Syndrome?
2)
For Nodding Syndrome Paitents’ Families and Other Surroundings
・When did you notice that your family has Nodding Syndrome?
・How do you feel about your family is having Nodding Syndrome?
・Do you feel financial difficulties to support Nodding Syndrome Patients?
・Is there any other problems do you have other than financial problems to support Nodding Syndrome
patients?
・Have you suffered from bad reputations about Nodding Syndrome?
・Can he/she(NS patient) work as other family members in daily life?
・Do you think your family is getting proper treatment from other people?
・Do you think your community members are cooperative with nodding syndrome patients?
・What can we do for better understanding for Nodding Syndrome patients?