Nodding Syndrome in Northern Uganda: An Ecology of Care Approach
A research project funded by the Japan Society for Promotion of Science Kakenhi No. 18H03442.
A research project funded by the Japan Society for Promotion of Science Kakenhi No. 18H03442.
Nodding syndrome (NS) is a form of epilepsy that affects previously healthy children, causing frequent seizures and a decline in cognitive and motor functions. In Northern Uganda, more than 3,000 NS cases were reported within a decade until 2013.
It has been proposed that NS is an autoimmune reaction to Onchocerca volvulus, the parasitic worm that causes river blindness. However, this alone does not explain the epidemic of NS since infection to the parasite is common in rural Africa. Some researchers believe that the epidemic was triggered by the civil war fought between the Lord's Resistance Army and the Ugandan government between 1987 and 2007.
NS has gravely influenced the lives of patients and their family members. Access to health and welfare institutions is limited. Moreover, as most patients have reached the age of adolescence and adulthood, concerns arise over their social life, including marriage and access to vital livelihood resources such as land.
We conduct a research project with the aim of understanding the problems NS patients and their families face through a set of contextual inquiries, which we refer to as the ecology of care: a transdisciplinary framework for understanding the knowledge, resources, and connections that determine the quality of life of persons in a particular milieu.
How NS affects patients’ households and the extent to which they are resilient to the disease burden require close investigation. Particularly important is the fact that NS is only one of many diseases and disabilities that affect local households.
We use a set of ethnographic methods to describe how certain health problems prevail within a network of mutually related individuals. Our research also recounts caring (and conflicting) relationships between individuals within the network.
We are a team of Japanese and Ugandan researchers who wish to understand the problems of NS patients and their families and help improve their living conditions. Members of the Uganda-Japan Nodding Syndrome Network include anthropologists and medical and health experts from both countries, working in collaboration since 2013.
Activities of the Network include:
- Building a broader network with international researchers.
- Learning from existing methods for helping families with epilepsy.
- Working with families with NS in Northern Uganda.
Our vision is to establish a method for community-based care and support for families with NS that works within resource-limited settings in rural Africa.
NS is not a disease unique to Northern Uganda: there are reports of patients in Tanzania and South Sudan. Moreover, forms of epilepsy associated with Onchocerciasis infection are suspected to exist in other sub-Saharan countries.
In October 2017, the 1st International Workshop on Onchocerciasis-Associated Epilepsy (OAE) was held at the University of Antwerp, Belgium. An alliance of researchers from various disciplines was created during the conference to nurture collaborative research projects and develop guidelines on preventing OAE and improving the quality of life of persons with OAE and their families.
https://www.uantwerpen.be/en/research-groups/oae/oae-alliance/
Being founding members of the alliance, we work in collaboration with international researchers engaged in the NS and OAE research. Furthermore, we work with the team led by Dr. Richard Idro, a pediatric neurologist at Makerere University and leading expert in the study of NS etiology and treatment.
Learning from existing methods for assisting people with epilepsy and their families is one of our key challenges.
MOSES (Modular Service Package of Epilepsy) is one such program that originated in Germany. Under the guidance of trained experts, patients form small groups of people to exchange their experiences and discuss how to deal with epilepsy. Discussions among patients can significantly help people with epilepsy because they often feel guilty or ashamed for having seizures in public and be subject to prejudice by others. Participants reflect on their seizure experiences to understand the underlying factors, and they also share their experiences of overcoming problems and coping with the symptoms.
MOSES may not be directly introduced to northern Uganda, where the living environment is very different from Germany or Japan. That is why we are trying to develop programs that fit in the context of rural African societies.
The Alliance for Community of Nodding Syndrome (ACNS) is a self-help organization formed in 2013 by several dozens of families with NS in a Northern Ugandan village in the NS endemic area.
The organization's first action was to establish a collective farm, and it enabled them to raise funds for their activities through the sale of harvested products. Moreover, the firm became the focal place for the members where they work together, exchange ideas and information, and nurture a sense of community.
In 2018, the ACNS launched additional activities with the support of the Asian Health Education Fund, a Japanese non-profit organization. The new activities aim to improve patients' health conditions by facilitating medication adherence and creating a safer living environment in and around the households.
Email:
unaduki.syndrome[at]gmail.com
Postal address:
Uganda-Japan Nodding Syndrome Network
c/o Dr. Yasuaki Sato
School of Global Humanities and Social Sciences,
Nagasaki University
1-14 Bunkyo-cho, Nagasaki 852-8521 Japan
