“I feel so bad but have nothing to do.” Exploring Ugandan caregivers’ experiences of parenting a child with severe malaria and subsequent repeated uncomplicated malaria

Abstract

BackgroundSevere malaria in children is often associated with long-term behavioural and cognitive problems. A sizeable minority of children go on to experience repeated malaria due to the high transmission and infection rates in the region. The purpose of this study was to explore caregivers’ experiences of parenting a child with a history of severe malaria followed by repeated episodes of uncomplicated malaria in comparison to healthy community children.MethodsThirty-one caregivers were enrolled in the study. These included caregivers of children previously exposed to severe malaria and who had experienced repeated uncomplicated malaria attacks (SM with RMA, n = 15), caregivers of children exposed to severe malaria who did not experience repeated episodes (SM, n = 10), and caregivers of healthy community children (CC, n = 6) were purposively selected.ResultsThematic-content analysis generated eight areas of concern, six of which were noted only by caregivers of children with SM or SM with RMA: (1) a sense of helplessness; (2) challenges with changes in behaviour; (3) responses to a child’s behaviour; (4) family life disruptions, including breakdown of relationships and inadequate male-spouse involvement in child care; (5) disagreements in seeking healthcare; (6) societal burden; and two by caregivers of children with SM, SM with RMA and also CC; (7) concern about academic achievement; and, (8) balancing work and family life.ConclusionsThe study findings suggest that severe malaria, especially when followed by repeated malaria episodes, affects not only children who have the illness but also their caregivers. The effects on caregivers can decrease their social functioning and isolate them from other parents and may disrupt families. Interventions to support caregivers by counselling the ongoing problems that might be expected in children who have had severe malaria and repeated episodes of malaria, and how to manage these problems, may provide a way to improve behavioural and mental health outcomes for those children and their caregivers.

“I do lack peace, and I’ve run out of answers”: primary caregivers’ perspectives on social and behaviour problems in cerebral malaria survivors in Blantyre, Malawi

“…Those caregivers who felt more positive emotions often attributed this to receiving support and understanding from their communities. Nakitende et al describe similar themes emerging in interviews with Ugandan caregivers whose children experienced either a single episode of severe malaria or an episode of severe malaria followed by multiple repeated malaria infections [ 29 ]. Both studies highlight the emotional burden on caregivers of children who survive CM with neurodisability and the profound impact that caring for these children can have on family and community dynamics.…”

Use of the creating opportunities for parent empowerment programme to decrease mental health problems in Ugandan children surviving severe malaria: a randomized controlled trial

“…Behavioural problems in childhood are associated with future psychiatric complications, challenges with education, employment, and social life [ 5 , 6 ]. In Ugandan children, behavioural problems after severe malaria may lead to harsh punishments from caregivers as a way of making a child behave well [ 7 ].…”

Parents’ perception on cause of malaria and their malaria prevention experience among school-aged children in Kutcha district, Southern Ethiopia; qualitative study

“…If left untreated, malaria can be complicated and results in death and morbidities such as anemia and malnutrition [13,[15][16][17][18][19]. For parents of children suffering from malaria, it leads to psychological trauma, distorts social relations, lowers the economic development as a result of treatment costs and loss of time to work and it even can become the cause of a separation of the parents of the child when it becomes impossible to afford treatment and associated costs [19][20][21]. Fortunately, malaria can be prevented by using proven preventive strategies and can be treated effectively using available anti-malarial drugs.…”