An Ecology of Care Approach to Nodding Syndrome in Northern Uganda (Makoto Nishi)
Nodding syndrome (NS) is a form of epilepsy that affects previously healthy children, causing frequent seizures and a decline in cognitive and motor functions. We recently launched 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. Previous studies indicate that the NS epidemic was triggered by a string of events that rendered the local Acholi population more susceptible to underlying environmental factors. It is increasingly evident that the epidemic is
a health event embedded in the local social settings and living conditions of the people. NS may affect the household economy in several ways, including additional cash expenditure for medication, loss of family time due to patient care, and loss of the patients’ livelihood. Furthermore, as many NS patients reach adolescence and adulthood, issues concerning their
social integration, including work and marriage, become crucial. Our research project addresses such questions as what resources are locally available to reduce the burden of families affected by NS and how NS patients, and the people surrounding them, find meaning in their lives in the context of Acholi society.