Adult Perceptions of Schistosomiasis, Mass Drug Administration and Praziquantel - An Ethnographic Study, 2019

Elimination of schistosomiasis as a public health problem in all endemic countries is the international goal stated in the WHO Neglected Tropical Disease Roadmap for 2021–2030. The primary method of schistosomiasis control for meeting this goal is preventative chemotherapy programmes that utilise community or school based Mass Drug Administration of the drug praziquantel. Uganda was at the forefront of preventative control programme implementation but within the country hotspots of schistosomiasis infection remain. An overemphasis on regular treatment, without comprehensively addressing factors that result in poor uptake of treatment in these high-risk populations is likely to impact the elimination of schistosomiasis as a public health problem.

The data are the English language anonymised transcripts from an ethnographic study involving adult participants from Hoima District, Uganda - a known hotspot of schistosomiasis transmission. The aim of the study was determine the understanding and perceptions of schistosomiasis and its impact within this transmission hotspot. The study also aimed to determine the facilitating and limiting factors associated with the preventative chemotherapy control programme. The study involved focus group discussions and in-depth interviews with adult members of two communities in Hoima District and key informant interviews with stakeholders in Hoima District's control programme.<p>Schistosomiasis remains a major public health problem in many developing countries, Uganda inclusive. It affects the poorest people, living in remote, marginal and rural areas, and causes life-long disability, disfigurement, reduced economic productivity and social stigma. In Hoima District, communities on the shores of Lake Albert retain high infection intensities levels. This is despite concerted efforts to provide annual community wide preventative chemotherapy through mass drug administration (MDA) programmes, with the latest reported coverage rates for districts with Lake Albert shores being above the WHO target of 75% of those eligible for treatment (currently school aged children and adults). Failure to gain control of infection in primary school children can result in the development of persistent morbidity that can be life threatening in adulthood. Without improved intervention we will fail to meet the Sustainable Development Goal 3 aim of promoting well being for all. The data pertains to an anthropology work package within the overall FibroScHot research programme, at the core of which is a phase IV clinical trial to optimise treatment frequency amongst school-aged children living in Lake Albert schistosomiasis transmission hotspots. The anthropology studies looked at perceptions, knowledge and practices related to schistosome transmission, disease, treatment and adherence to mass drug administration.</p>

在所有流行国家消除血吸虫病这一公共卫生问题，是世界卫生组织（WHO）《2021-2030年被忽视热带病路线图》中提出的国际目标。实现该目标的血吸虫病控制主要方法是预防性化疗项目，此类项目通过社区或学校层面的大规模药物给药（MDA）分发吡喹酮。乌干达在预防性控制项目实施方面处于领先地位，但该国境内仍存在血吸虫病感染热点地区。若过度强调常规治疗，却未全面解决导致这些高危人群治疗接受率低的因素，可能会影响血吸虫病作为公共卫生问题的消除进程。

本数据集为乌干达霍伊马区（已知的血吸虫病传播热点地区）成人参与者的民族志研究（ethnographic study）匿名英文转录本。该研究旨在了解该传播热点地区人群对血吸虫病及其影响的认知与看法，同时探究与预防性化疗控制项目相关的促进因素和限制因素。研究方法包括对霍伊马区两个社区的成人成员进行焦点小组讨论和深度访谈，以及对该区控制项目的利益相关者进行关键知情人访谈。

血吸虫病仍是包括乌干达在内的众多发展中国家的主要公共卫生问题。它影响着生活在偏远、边缘及农村地区的最贫困人口，导致终身残疾、毁容、经济生产力下降及社会污名（social stigma）。在霍伊马区，阿尔伯特湖沿岸社区的感染强度仍处于较高水平——尽管当地已通过大规模药物给药（MDA）项目协同开展年度社区预防性化疗，且最新报告显示，阿尔伯特湖沿岸地区符合治疗条件人群（目前为学龄儿童及成人）的覆盖率已超过WHO设定的75%目标。若无法控制学龄儿童的感染，可能导致其发展为持续性发病，成年后甚至危及生命。若无改进的干预措施，我们将无法实现可持续发展目标3中"促进全民福祉"的愿景。本数据集属于整体FibroScHot研究项目下的人类学工作包，该项目核心为一项IV期临床试验，旨在优化阿尔伯特湖血吸虫病传播热点地区学龄儿童的治疗频率。人类学研究聚焦于人群对血吸虫传播、疾病、治疗及大规模药物给药依从性的认知、知识与实践。