Elimination of schistosomiasis as a public health problem in all endemic countries is the international goal stated in the WHO Neglected Tropical Disease Roadmap for 2021–2030. The primary method of schistosomiasis control for meeting this goal is preventative chemotherapy programmes that utilise community or school based Mass Drug Administration of the drug praziquantel. Uganda was at the forefront of preventative control programme implementation but within the country hotspots of schistosomiasis infection remain. An overemphasis on regular treatment, without comprehensively addressing factors that result in poor uptake of treatment in these high-risk populations is likely to impact the elimination of schistosomiasis as a public health problem. The data are the English language anonymised transcripts from an ethnographic study involving adult participants from Hoima District, Uganda - a known hotspot of schistosomiasis transmission. The aim of the study was determine the understanding and perceptions of schistosomiasis and its impact within this transmission hotspot. The study also aimed to determine the facilitating and limiting factors associated with the preventative chemotherapy control programme. The study involved focus group discussions and in-depth interviews with adult members of two communities in Hoima District and key informant interviews with stakeholders in Hoima District's control programme.Schistosomiasis remains a major public health problem in many developing countries, Uganda inclusive. It affects the poorest people, living in remote, marginal and rural areas, and causes life-long disability, disfigurement, reduced economic productivity and social stigma. In Hoima District, communities on the shores of Lake Albert retain high infection intensities levels. This is despite concerted efforts to provide annual community wide preventative chemotherapy through mass drug administration (MDA) programmes, with the latest reported coverage rates for districts with Lake Albert shores being above the WHO target of 75% of those eligible for treatment (currently school aged children and adults). Failure to gain control of infection in primary school children can result in the development of persistent morbidity that can be life threatening in adulthood. Without improved intervention we will fail to meet the Sustainable Development Goal 3 aim of promoting well being for all. The data pertains to an anthropology work package within the overall FibroScHot research programme, at the core of which is a phase IV clinical trial to optimise treatment frequency amongst school-aged children living in Lake Albert schistosomiasis transmission hotspots. The anthropology studies looked at perceptions, knowledge and practices related to schistosome transmission, disease, treatment and adherence to mass drug administration.

Focus group discussions were conducted with community members comprising of 6 to 7 participants per group. Group categories included gender and youth/non-youth and were organised separately. A total of 14 FGDs were conducted, in which 97 people participated. In-depth interviews were conducted with adult community members in order to understand their perceptions and lived experiences (phenomenology) and coping strategies. A total of 52 in-depth interviews were conducted. Eleven of these in-depth interviews (numbers 42-52) were purposively selected as individuals who had previously suffered from schistosomiasis (Bilharzia). Key informant interviews were conducted with stakeholders in the control programme etiher at the district, subcounty, or lower local levels. In total 12 key informants were interviewed. Interviews and focus group discussions were conducted in English, Alur or Lunyoro.