Community education through local spheres of influence and lived experience of health benefits improve population adherence to programmatic Mass Drug Administration in a persistent schistosomiasis hotspot: an ethnographic study

BackgroundThe WHO Neglected Tropical Disease Roadmap update for 2021-2030 includes new goals of elimination of schistosomiasis as a public health problem in all endemic countries. Despite heightened efforts since 2012, critical action is still required in addressing barriers to Mass Drug Administration, the primary method of control. This includes improvement in adherence by the populations in persistent schistosomiasis hotspots. One such hotspot is the shoreline of Lake Albert, Uganda, where schistosomiasis control is provided to school-aged children and adults. An overemphasis on regular treatment, without comprehensively addressing factors that result in low uptake of treatment in these high-risk populations is likely to impact the elimination of schistosomiasis as a public health problem. MethodsAn ethnographic study using in-depth interviews, key informant interviews, focus group discussions and participant observation was conducted in two study sites along Lake Albert. Thematic content analysis was used during data analysis. ResultsThe study revealed that the size, taste and smell of the drug, along with its side-effects; poor community integration and occupational behaviour resulting in non-mobilisation; and unfounded rumours and beliefs remain reasons for persistent low uptake of praziquantel by some. Conversely, lived experience of improved health through participation and knowledge of the dangers of the disease if not treated, facilitated treatment uptake. Social influence in crucial knowledge attainment was clear through positive attitudes to localised sensitisation by community drug distributors, along with the delivery of the drug at no cost at home. Crucially, for the majority of participants the facilitating factors were found to outweigh the inhibitory factors related to the drugs side effects. ConclusionWe recommend a good community engagement strategy that provides continuous education and sensitisation, with improved recruitment and training provision for Community Drug Distributors to facilitate programme reach to groups with current poor engagement. Author summaryOver the last two decades, in the Lake Albert region, Uganda, there has been a number of interventions targeted at schistosomiasis by grass root structures, and district and national level actors; but despite this the Lake Albertine districts remain a highly endemic region for schistosomiasis. In recognition of this persistent schistosomiasis, we examined the factors that inhibit or facilitate adherence to mass drug administration (MDA) using an ethnographic approach. Lived experience of improved health through participation and knowledge of the dangers of the disease if not treated, facilitated treatment uptake. Localised social influence was crucial in gaining knowledge that facilitated uptake. Key were positive attitudes to sensitisation conducted by community drug distributors; whilst uptake of treatment by children was reportedly heavily influenced by their mothers positive attitudes to treatment. The drug itself, praziquantel, was described as "very strong" and "effective" because of the relief from symptoms. There are, however, a number of people, both children and adults, who fail to adhere to MDA. Therefore, we recommend continuous education and sensitisation, alongside increased number and training of Community drug distributors/village health team members; with continued motivation for them as they are vital in enabling treatment uptake.