Socio-cultural and structural barriers influencing parents’ knowledge and access to information on schistosomiasis in children around Ugandan Lakes

Background: In Uganda, the national prevalence of schistosomiasis is 36.1% among the two-to-four-year age group. Knowledge about schistosomiasis and socio-cultural factors have been reported to influence adult participation in mass drug administrations of praziquantel, the standard medication used to treat the disease. In advance and support of the (pilot) introduction of the recently developed paediatric praziquantel formulation (arpraziquantel), we conducted research on parent and other community members’ knowledge about paediatric schistosomiasis, their information sources, and potential perceived barriers that influence knowledge and access to information on schistosomiasis.

Methods: This cross-sectional qualitative study consisted of 65 in-depth interviews and ten focus group discussions with parents/guardians of preschool-aged children (PSAC), Village Health Teams (VHTs), health professionals, community leading persons and district officials, in addition to direct observations. We collected data concurrently in Hoima District at Lake Albert and Bugiri at Lake Victoria, Uganda, in 2022. The analysis followed both an inductive and a deductive thematic approach.

Results: Despite high parental awareness of the disease and knowledge of signs and symptoms, we identified less familiarity with its transmission and prevention. With limited communication channels, VHTs emerged as the primary information sources but reflected varied local understandings of schistosomiasis. Parents expressed a desire to be informed about the new paediatric treatment through VHTs, health professionals, and community leaders, and partly through the radio. Other mentioned socio-cultural and structural barriers to information flow included language barriers, illiteracy, high population movement, fears, and resentment from restrictive government fishing laws.

Conclusions: Carefully designed information campaigns tailored to local circumstances and health literacy needs should be carried out by trained VHTs and preferably supported by health professionals and the local leadership structure. These components are essential to inform parents/guardians of PSAC, enabling them to make well-informed decisions for their children’s health.