“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

• Published in: Malaria Journal
• Main Authors: Ann J. Nakitende, Paul Bangirana, Noeline Nakasujja, Margaret Semrud-Clikeman, Andrew S. Ssemata, Chandy C. John, Richard Idro
• Format: Article in Journal/Newspaper
• Language: English
• Published: BMC 2018
• Subjects: Repeated malaria attacks; Caregivers; Children; Severe malaria; Uncomplicated malaria; Parenting; Arctic medicine. Tropical medicine; RC955-962; Infectious and parasitic diseases; RC109-216; Arctic
• Online Access: https://doi.org/10.1186/s12936-018-2514-z; https://doaj.org/article/5129428bbbe74faebe7f3a208e04ad76

Abstract Background Severe 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. Methods Thirty-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. Results Thematic-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. Conclusions The 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 ...