I never knew that one day I would be called a doctor”: A participatory process evaluation of citizen scientists’ participation in behaviour change intervention regarding schistosomiasis among endemic communities of western Uganda

In many parts of sub-Saharan Africa, a hidden danger lurks in the fresh water that communities rely on for drinking, bathing, and washing. This danger is schistosomiasis, a disease caused by tiny parasites that live inside freshwater snails. When people come into contact with water containing these infected snails, the parasites can burrow through their skin and cause serious long-term illness, affecting the liver, bladder, and growth of children. For decades, health experts have known that the only way to stop the spread is to change how people interact with their environment: using clean water, building latrines, and avoiding contact with contaminated sources. However, telling people to change their habits is often not enough. The most effective solutions come from within the community itself, where local people understand the water, the land, and the cultural reasons why certain behaviors are hard to change. This is where the concept of citizen science enters the picture. Instead of bringing in outside experts to do all the work, citizen science invites ordinary community members to become active partners in research and health education, turning them into the eyes, ears, and voices of the scientific effort.

In western Uganda, where the disease is widespread, a project called ATRAP put this idea to the test. The team recruited twenty-five local volunteers, known as citizen scientists, to monitor the snails in the water and teach their neighbors how to stay safe. The researchers wanted to know what happened to these volunteers and how the communities received them. They did not just look at whether the disease rates went down; they wanted to understand the human story behind the intervention. They asked the volunteers what changed in their own lives, how the neighbors viewed them, and what obstacles stood in the way of their work. The results revealed a powerful transformation: the volunteers gained confidence, respect, and new skills, while the community began to trust them as local experts. However, the study also found that good intentions and education alone cannot solve the problem if the community still lacks basic necessities like clean water or if local leaders do not fully support the message.

The project began in the Kagadi and Ntoroko districts, areas where the disease is so common that more than ninety percent of people in some villages carry the infection. The volunteers were chosen through a transparent process where community leaders helped pick individuals who were hardworking and respected. These twenty-five citizens received training on how to identify the snails, how to use smartphones to record their findings, and how to talk to their neighbors about the disease. They learned that the parasite enters the body through the skin, not the mouth, a fact that many in the community had previously misunderstood. Armed with this knowledge, the volunteers spent a week in November 2021 going from house to house, using drama, local languages, and simple demonstrations to explain how to prevent infection. They encouraged people to boil their drinking water, wear boots when wading, and use latrines instead of defecating near the water.

The impact on the volunteers themselves was profound. Many of them had never imagined they would be called "doctors" by their neighbors. One volunteer from Ndaiga Sub-county recalled how he used to think the disease entered through the mouth, but after his training, he understood the real danger and changed his own habits, such as boiling his water before drinking it. Another volunteer from Bwikara Sub-county described how he gained the confidence to speak to anyone, even traditional healers and local leaders, without fear. The community began to refer to them as "water doctors" or "snail collectors," titles that brought a new level of respect and social standing. They felt a deep sense of pride in their ability to protect their families and neighbors. The study found that this shift in status was not just about the title; it was about the trust the community placed in them. People listened to them because they were locals who had been trained and who walked the same paths they did every day.

The community's reaction to this approach was overwhelmingly positive. Residents appreciated that the volunteers were selected fairly and that they were trained to be practical and clear. Unlike other health campaigns that might feel distant or temporary, these volunteers walked from house to house, engaging people directly. They used local languages and acted out scenes to make the message understandable for everyone, including those who could not read. A local council chairperson noted that while other organizations might just announce a program and leave, these volunteers went deep into the villages, ensuring that everyone, even children, understood the risks. The community felt that the volunteers were more effective than other groups because they combined scientific knowledge with the ability to communicate it in a way that felt familiar and relevant.

However, the path was not without significant hurdles. The volunteers faced difficult physical conditions, often walking long distances to reach remote water points, sometimes in heavy rain or under a scorching sun without adequate gear like umbrellas or bicycles. In some cases, religious restrictions prevented them from accessing certain water sites on specific days, forcing them to reschedule their work. A more complex challenge arose from the expectations of the community itself. Some neighbors, seeing the volunteers working hard, assumed they were being paid well and asked for money or drinks. Others were frustrated that the project could not provide immediate solutions to their most pressing needs, such as clean water tanks or better roads. The volunteers found themselves in a difficult position: they were educating people about the need for clean water, but they could not provide it themselves. This gap between what the project offered and what the community desperately needed sometimes led to resistance or a lack of cooperation.

The study also highlighted a disconnect with some local leaders. While many leaders were supportive, others were reluctant to talk about the disease, perhaps because they did not view it as a serious threat. Since the community trusts their leaders, if a leader dismisses the problem, the people are less likely to listen to the volunteers. This suggested that for such programs to succeed, local leaders must be involved from the very beginning, not just as observers but as active partners in spreading the message. The researchers also noted that while the volunteers were effective at raising awareness, the intervention could not address the root cause of the problem: the lack of safe water and sanitation infrastructure. The volunteers could teach people to boil water, but they could not build a water supply system.

The researchers concluded that citizen science is a powerful tool for health education because it builds trust, empowers local people, and creates a sense of ownership within the community. The volunteers proved that ordinary people can become effective agents of change when given the right training and support. However, the study made it clear that education alone is not a complete solution. For these efforts to be sustainable and truly effective, future projects must address the broader needs of the community, such as access to clean water and sanitation, and must ensure that local leaders are fully engaged. The volunteers' journey showed that when people are treated as partners rather than just recipients of aid, they can transform their communities, but they cannot do it without the necessary resources and support to back up their words.