Community Insights Into Societal Causes of and Solutions for Schistosomiasis Transmission in Lake Albert Fishing Villages: A Participatory Approach, 2021.

Anyolitho, Maxson K and Neema, Stella and Odoi, Paskari and Moses, Adriko and Vennervald, Birgitte J and Tukahebwa, Edridah M and Wilson, Shona (2025). Community Insights Into Societal Causes of and Solutions for Schistosomiasis Transmission in Lake Albert Fishing Villages: A Participatory Approach, 2021. [Data Collection]. Colchester, Essex: UK Data Service. 10.5255/UKDA-SN-857628

Schistosoma mansoni, an aquatic snail-borne parasitic worm of major public health consequence, is addressed alongside other major neglected tropical diseases (NTDs) in Sustainable Development Goal 3. Since the 2012 inception of the WHO Roadmap for Control of NTDs, reliance has been on annual preventative chemotherapy (PC), mostly within schools, for schistosomiasis control. However, social and ecological promotors of transmission result in persistent hotspots of infection. In recognition of this, an integrated approach based upon PC, health education, access to clean water and sanitation and environmental control of the intermediate host is incorporated into the 2021-2030 WHO Roadmap for NTDs. However, clear gaps in knowledge pertaining to socio-cultural and economic drivers of water contact and resultant barriers to implementation of behaviour change programmes exist and require addressing for successful design and implementation of multi-strategy control. This will be particularly pertinent in fishing villages where livelihoods depend on water contact. This project aimed to identify social and economic factors that drive transmission and the social actions proposed by community members to change water-contact behaviours and help reduce transmission.

Data description (abstract)

Uganda was at the forefront of preventative control programme implementation but within the country hotspots of schistosomiasis infection remain. Elimination of NTDs including 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. To obtain this goal the roadmap calls for an integrated approach to control that includes behavioural change. To address behavioural change optimally, an understanding of social and economic factors that drive water contact, and by extension schistosomiasis transmission, is required; along with acceptance, willingness and ability to make these behavioural changes by community members. To achieve this a bottom-up approach to behavioural change programme design is desirable.

The data are the English language anonymised transcripts from an participatory study involving adult participants and emancipated minors (aged 16 and 17 years) from villages on the Lake Albert shoreline in Hoima District, Uganda - a known hotspot of schistosomiasis transmission. The transcripts capture the resource use that drives contact with the lake and the management of those resources; whether community members had the autonomy to change their behaviour if they wished and what help they thought was required to reduce water contact behaviours in their communities.

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