Dataset for qualitative study on perceptions and experiences of caretakers of children with neurologic sequelae after severe malaria

Neurologic sequelae may occur after childhood severe malaria. This study sought to determine the perceptions and experiences of caretakers of children with neurologic sequelae after severe malaria in Uganda. This phenomenological study involved twenty-three in-depth interviews and four focus group discussions with caretakers of children with neurologic sequelae, and seven in-depth interviews with clinical staff at Mulago National Referral Hospital in Kampala district and Jinja Regional Referral Hospital in Jinja district. Interviews were audio taped, transcribed verbatim, and back translated into English for those conducted in the local language (Luganda or Lusoga). Data was then coded and analyzed using content thematic analysis. Neurologic sequelae included motor, movement, cognitive, behavioral, and sensory deficits as well as epilepsy. Eight themes emerged on perceptions and experiences of caretakers of children with neurologic sequelae after severe malaria, namely: mixed perceptions about the sequelae 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. There were various perceptions about the cause of sequelae including severe malaria, antimalarial medication, witchcraft, and other cultural orientations.<b> </b>Misconceptions exist among caretakers about the cause of neurologic sequelae in their children. Caretakers have negative experiences, however, they learnt to cope with their children’s impairments