ISSN 2360-7920
Executive Summary
Light for the World Commissioned a study on children affected by nodding syndrome in Maridi County, Western Equatoria State from the 12th -14th December 2023. The study is intended to deliver a brief short report about the visit — which focus on recommendations for further interventions. The study was carried out by three experts from the Ministry of Gender, Child and Social Welfare, Ministry General Education and Instruction and Light for the world. The study aims to: first get better understanding of the nodding syndrome in the area and how it affects the education of children. Secondly, to have an interaction with Sudan Evangelical Mission staffs in Maridi, County Education department staffs, County health department — Teachers and Other implementing partners like AMREF, CAUM on the ground and the families/parents of the affected children. Thirdly, visit to livelihood program being executed by the parents of children with nodding. Fourthly, see some intervention strategies that can be recommended to donors for further support in the region and make a one-day presentation to the Education cluster. The study employed qualitative method in its approach through the use of Key Informant interviews with government officials in the departments of health, education and gender in Maridi County. Focus group discussions were conducted with the Faith based Women Saving and loan Association, Techers, CBR officers of Sudan Evangelical Mission and the parents of the children affected with nodding syndrome. County health department through the support of AMREF, LIGHT for the World, CAUM and Sudan Evangelical Mission registered a number of achievements in their consortium project which ended last year. These include: health and education outreach that created awareness among the community and were able to refer children to the mental health clinic for medical attention through diagnosis and provision of anti-epileptic drugs that reduced the seizures and contributed to better health outcomes of the children affected with the nodding syndrome. This signifies the critical role played by the Community based Rehabilitation workers in identifying children within communities, making referral to the clinics and ensuring survivors take drugs timely. Secondly, Inclusive approaches were employed in training teachers, school management and pupils on sign language, braille and child safeguarding principles in schools.Despite all these achievements, nodding syndrome is being seen in signs of discrimination in the community and in schools-fear of unknown/uncertainty and multiple theories of causation exist and families of the affected children are grieving not only their children illness but a loss of social value and lineage. The lost and suffering should be seen within the context of wider suffering of the society. The nexus between Sociological-disability-Public Health need to be investigated in order to holistically address the etiology and know the underlying cause which could lead to cure of the disease and reduction of the viral load of the Finally, there is need to help clinicians, scientists, educationists, and policy- makers develop guidelines for prioritizing the severe conditions of the NS and take this as a national concern for redress.