Coping with disabling chronic illnesses: a case of caregivers of children with nodding syndrome in Pader District-Northern Uganda

Abstract

Nodding syndrome is an illness that is characterized by head nodding and has been reported in northern Uganda, South Sudan and Ulanga district in Tanzania. This study on Coping Strategies with Disabling Chronic Illnesses: A Case of caregivers of children with Nodding Syndrome in Pader district, was carried out in Pader district in the Sub-counties of Atanga, Angagura and Laguti. It investigated caregiver’s coping with balancing caregiving roles for unaffected and affected children with nodding syndrome; caregivers’ coping with the stressors and stigma associated with their children’s suffering from Nodding syndrome and evaluated caregiver’s health-seeking for Nodding Syndrome. Information from respondents was elicited using FGDs, in depth interviews, key informant interviews. The findings reveal that community in Pader district refer locally to nodding syndrome as luluc literally meaning dropping forward of the head. The syndrome is still perceived as having no cure much as some children affected by the syndrome, who have consistently been on medication, and have been cared for well have improved; others have even resumed studies. Care takers borrow medication from their friends (other care takers) Parents/care takers tie children to poles/trees or lock them inside the house to prevent them from wandering and falling in fire or water. The biggest problem is insufficient food to feed the affected children because caregivers do not have sufficient time to cultivate food. Children suffering from nodding syndrome are sexually abused; others have been impregnated and caring for them together with their children has become very challenging for their care takers. CARITAS was helping the community by advocating the arrest and taking up prosecution of the offenders with the support of the organization’s legal team.