Empowering communities through citizen science and participatory action research: implementation of a schistosomiasis communication campaign in Uganda

Schistosomiasis is a water-related disease strongly linked with high-risk water and sanitation practices perpetuating disease transmission. In Uganda, despite health education and sensitisation efforts through communication campaigns by the Ministry of Health to reduce schistosomiasis prevalence, common risky practices still pose a challenge, especially among endemic communities. Here, we steered away from the conventional top-down approach to communication campaigns and explored alternative methods. We employed citizen science (CS) and other participatory action research (PAR) techniques as a bottom-up approach to co-design and implement a communication campaign among communities of western Uganda, to achieve a more tangible outcome of behaviour change for preventing schistosomiasis. We collected qualitative data using data party, world cafe, prioritisation and ranking, focus group discussion, and key informant interviews from 378 purposively selected individuals and analysed it using a thematic analysis model. Community volunteers, community radios and local leaders were the most preferred channels for passing schistosomiasis information identified by participants. Lack of access to safe water and healthcare services, open defecation, and inadequate knowledge of schistosomiasis are some of the most pressing problems prioritised. Door-to-door visits by citizen scientists (CSs), community meetings, drama, and tournaments were the channels proposed by CSs and community groups during the co-design workshops. Over 1000 households and about 9000 community members were directly reached using the channels. Endemic communities prefer receiving schistosomiasis information using local channels instead of conventional ones. Combining citizen science with other PAR approaches empowers communities to interpret research findings in their contexts and take charge of the interventions. As such, clear and simple message coverage and a high audience turn-up can be achieved. A follow-up study is needed to evaluate the process and impact of the communication intervention on the citizen scientists and the community's knowledge, attitudes, and practices regarding preventive measures.