Communities' Perception, Knowledge, and Practices Related to Human African Trypanosomiasis in the Democratic Republic of Congo

Background: The number of human African trypanosomiasis (HAT) cases in the Democratic Republic of Congo (DRC) has significantly reduced, thanks to more effective drugs and screening tools and regular mass screening. However, this potentially jeopardizes HAT control activities, especially community engagement. Methods: We used an ecological model framework to understand how various factors shape communities' knowledge, perceptions, and behavior in this low endemicity context. Community members, frontline health providers, and policymakers were consulted using an ethnographic approach. Results: Communities in endemic areas are knowledgeable about causes, symptoms, and treatment of HAT, but this was more limited among young people. Few are aware of new HAT treatment or screening techniques. Participation in mass screening has declined due to many factors including fear and a lack of urgency, given the low numbers of cases. Delays in seeking medical care are due to confusion of HAT symptoms with those of other diseases and belief that HAT is caused by witchcraft. Conclusions: Community members see their role more in terms of vector control than participation in screening, referral, or accepting treatment. We propose recommendations for achieving sustainable community engagement, including development of an information and communication strategy and empowerment of communities to take greater ownership of HAT control activities.