Abstract
BackgroundCaregivers of patients with chronic illnesses are often uncompensated for work that is physically demanding, time consuming and emotionally and economically draining. This is particularly true for caregivers of children with nodding syndrome, an emergent neurological disorder of unknown etiology in resource poor settings in Africa.We aimed to explore perceptions of caregivers regarding challenges that a typical caregiver faces when caring for a child with nodding syndrome.MethodsWe used a qualitative exploratory study design with focus group discussions and in-depth interviews to collect data. We analyzed data using the qualitative analysis software package of NVivo and thematic query building.ResultsEmergent themes centered on burden of care with emotional agony as the most prominent. Subthemes reflecting the burden of care giving included child and caregiver safety concerns, burnout, social isolation and rejection, and homicidal ideation. Caregivers also complained of physical and financial constraints associated with the care of children with nodding syndrome.ConclusionsThe findings point to a high burden of care for caregivers of children with nodding syndrome and suggests the need to incorporate community-based psychosocial and mental health care services for the caregivers of affected children into the national health system response.
Highlights
Caregivers of patients with chronic illnesses are often uncompensated for work that is physically demanding, time consuming and emotionally and economically draining
More than 3000 children have been affected by nodding syndrome in post-war northern Uganda that faced chronic adversity, internal displacement and disrupted social networks following more than 20 years of armed conflict [1]
What are the challenges of taking care of a child with nodding syndrome? As a consequence of caring for a child with nodding syndrome, key emerging themes included child safety concerns, burnout, social isolation and rejection, homicidal ideation, and physical and financial constraints
Summary
Caregivers of patients with chronic illnesses are often uncompensated for work that is physically demanding, time consuming and emotionally and economically draining This is true for caregivers of children with nodding syndrome, an emergent neurological disorder of unknown etiology in resource poor settings in Africa. Nodding syndrome has been described in areas that have experienced adversities such as the prolonged wars in northern Uganda and southern Sudan [1]. These are resource poor settings with limited access to primary health care services. More than 3000 children have been affected by nodding syndrome in post-war northern Uganda that faced chronic adversity, internal displacement and disrupted social networks following more than 20 years of armed conflict [1]. Symptoms of nodding syndrome are characterized by head nodding with or without other seizure types, the name
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