IntroductionSchistosomiasis poses a serious public health problem and a social challenge affecting over 240 million people, the majority of whom live in sub-Saharan Africa. The World Health Organization (WHO) recommends praziquantel (PZQ) drug treatment through regular mass drug administration (MDA) accompanied by social mobilisation and health education and sensitisation. With social mobilisation and health education and sensitisation, there is bound to be increased demand for the PZQ, especially in the case of endemic communities. However, it is not clear where communities go for PZQ treatment in the absence of PZQ MDA. We explored the health-seeking behaviours regarding schistosomiasis treatment among communities along Lake Albert in Western Uganda when MDA had delayed, to inform a review of the implementation policy for the achievement of the WHO’s 2030 target of 75% coverage and uptake.Methods and materialsWe conducted a community-based qualitative study in Kagadi and Ntoroko, an endemic community in January and February 2020. We interviewed 12 individuals: local leaders, village health teams, and health workers, and conducted 28 focus group discussion sessions with 251 purposively selected community members. The audio recordings of the data were transcribed and analyzed using a thematic analysis model.ResultsGenerally, participants seldom seek medication for schistosomiasis-related signs and symptoms from government hospitals and health centres II, III and IV. Instead, they rely on community volunteers such as VHTs, private facilities, such as clinics and drug shops nearby, or traditional sources (e.g. witch doctors and herbalists). Results show that factors influencing people to seek treatment from sources other than the government are: the absence of PZQ drugs in the government health facility; health workers’ negative attitude towards patients; long distances to the government hospitals and health facilities; poor and inaccessible roads; medication-related costs; and negative perceptions of the PZQ drug.ConclusionsAvailability and accessibility of PZQ seem to be a big challenge. PZQ uptake is further hampered by health systems and community-related and socio-cultural factors. Thus there is a need to bring schistosomiasis drug treatment and services closer to endemic communities, stock nearby facilities with PZQ and encourage endemic communities to take the drug. Contextualised awareness-raising campaigns are needed to debunk myths and misconceptions surrounding the drug.Supplementary InformationThe online version contains supplementary material available at 10.1186/s12889-023-16020-z.