On the Zanzibar islands, United Republic of Tanzania, elimination of urogenital schistosomiasis is strived for in the coming years. This qualitative study aimed to better understand community knowledge, perceptions, and practices associated with schistosomiasis among school-aged children on Unguja and Pemba islands, in order to inform the development of behavior change interventions contributing to eliminate urogenital schistosomiasis.

In 2011, we conducted 35 children’s discussion groups, 41 in-depth interviews with parents and teachers, and 5 focus group discussions with community members in Zanzibar. Using a modified-grounded theory approach, we transcribed and coded the narrative data followed by thematic analysis of the emergent themes.

Urogenital schistosomiasis is a common experience among children in Zanzibar and typically considered a boys’ disease. Children engage in multiple high-risk behaviors for acquiring schistosomiasis because of poor knowledge on disease transmission, lack of understanding on severity of disease-associated consequences, and lack of alternative options for water related activities of daily living and recreational play. Local primary school teachers had little to no training about the disease and no teaching tools or materials for students.

Conducting activities in open natural freshwater contaminated by S. haematobium larvae compromises the health of school-aged children in Zanzibar. The perception of urogenital schistosomiasis as a minor illness rather than a serious threat to a child’s well-being contributes to the spread of disease. Understanding community perceptions of disease along with the barriers and facilitators to risk reduction behaviors among children can inform health promotion activities, campaigns, and programs for the prevention, control, and elimination of urogenital schistosomiasis in Zanzibar.