From Health Advice to Taboo: Community Perspectives on the Treatment of Sleeping Sickness in the Democratic Republic of Congo, a Qualitative Study

Background: Socio-cultural and economic factors constitute real barriers for uptake of screening and treatment of Human African Trypanosomiasis (HAT) in the Democratic Republic of Congo (DRC). Better understanding and addressing these barriers may enhance the effectiveness of HAT control. Methods: We performed a qualitative study consisting of semi-structured interviews and focus group discussions in the Bandundu and Kasaï Oriental provinces, two provinces lagging behind in the HAT elimination effort. Our study population included current and former HAT patients, as well as healthcare providers and program managers of the national HAT control program. All interviews and discussions were voice recorded on a digital device and data were analysed with the ATLAS.ti software. Findings: Health workers and community members quoted a number of prohibitions that have to be respected for six months after HAT treatment: no work, no sexual intercourse, no hot food, not walking in the sun. Violating these restrictions is believed to cause serious, and sometimes deadly, complications. These strong prohibitions are well-known by the community and lead some people to avoid HAT screening campaigns, for fear of having to observe such taboos in case of diagnosis. Discussion: The restrictions originally aimed to mitigate the severe adverse effects of the melarsoprol regimen, but are not evidence-based and became obsolete with the new safer drugs. Correct health information regarding HAT treatment is essential. Health providers should address the perspective of the community in a constant dialogue to keep abreast of unintended transformations of meaning. Author Summary: The principal strategy for the control of HAT is based on early detection and prompt treatment of identified cases. A range of taboos are associated with HAT treatment in DRC. The origin of these taboos is not well understood. These taboos constitute major issues for patients and their families, lead to huge social pressure from the community on HAT patients and add in themselves to the burden caused by the disease itself. The aim of this study is to document the origin of these taboos and other cultural factors that are associated with HAT treatment, since an improved understanding of these factors and their implications may lead to strategies for improved community adherence to HAT screening and treatment. We found that the taboos are associated with the melarsoprol toxicity and have been established empirically following past interactions between healthcare providers and communities. The prohibitions started as simple instructions provided by healthcare providers about the management of HAT cases, but over time evolved into the community-based taboos we observe now. Use of less toxic treatment alternatives for HAT, dissemination of correct information regarding HAT treatment regimens, possible occurrence of adverse events and their cause would be beneficial to HAT control.