Perceptions and experiences of caretakers of children with neurologic deficits after severe malaria in Uganda

PURPOSE: Neurologic deficits may occur after severe malaria in childhood. This study sought to determine the perceptions and experiences of the caretakers of children with neurologic deficits after severe malaria in Uganda. METHODS: This was a thematic analysis informed by a phenomenological interest in lived experience which involved twenty-three in-depth interviews and four focus group discussions. Interviews were audio-taped, transcribed verbatim, and back-translated into English for those conducted in the local languages. Data were coded and analyzed using content thematic analysis. RESULTS: Neurologic deficits included motor, movement, cognitive, behavioral, and sensory deficits as well as epilepsy. Eight themes emerged which included: mixed perceptions about the deficits after severe malaria, difficulty in educating the impaired children, mistreatment by the community, mental and emotional distress, financial strain, misconceptions, misunderstandings and conflicts, limited access to specialized care services, and adaptation to a new way of life. CONCLUSION: Caretakers have misconceptions about the cause of neurologic deficits in their children. Caretakers have negative experiences, however, they learn to cope with their children's impairments. Health messaging and education campaigns targeting caretakers of children with neurologic deficits within communities should be conducted to provide awareness of the neurologic deficits of severe malaria.