An exploration of caregiver burden for children with nodding syndrome (lucluc) in Northern Uganda
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Date
2016
Journal Title
Journal ISSN
Volume Title
Publisher
BMC psychiatry
Abstract
Caregivers 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.
Methods: We 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.
Results: Emergent 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.
Conclusions: The 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.
Description
Keywords
Nodding syndrome, Caregiver, Caregiver burden, Northern Uganda
Citation
Nakigudde, J., Mutamba, B. B., Bazeyo, W., Musisi, S., & James, O. (2016). An exploration of caregiver burden for children with nodding syndrome (lucluc) in Northern Uganda. BMC psychiatry, 16(1), 1-11.