Exploring barriers to seeking treatment for human African trypanosomiasis due to T.b. rhodesiense in communities around Vwaza Marsh Wildlife Reserve in Rumphi and Mzimba Districts, northern Malawi

BackgroundRhodesiense human African trypanosomiasis (r-HAT) remains a public health problem in Malawi, with the country reporting the highest number of cases of this acute form of sleeping sickness in the East African endemic region in 2019 and 2020. This paper explores the bottlenecks to seeking health care among patients with r-HAT around the Vwaza Marsh Wildlife Reserve (VMWR) in Rumphi and Mzimba districts in northern Malawi. Methodology/Principal FindingsThis qualitative study used key informant interviews (KIIs), in-depth interviews (IDIs) and focus group discussions (FGDs) to collect data. Study participants included health care workers, current and past r-HAT patients and their guardians, community leaders and traditional healers. All interviews were audio-recorded and transcribed verbatim. Content analysis was performed with NVIVO. Since r-HAT has similar signs and symptoms to malaria, patients either self-medicate or are prescribed antimalarial treatment, delaying the initiation of r-HAT treatment. While diagnosis of r-HAT can be done at health centre level, treatment requires hospitalization at the district hospital situated 60 kilometers away. Due to high levels of poverty, patients struggle to afford transport to the district hospital and their upkeep during hospitalization; patients and their guardians explained how they sold their property to fund this. In addition, patients fear undergoing very painful diagnostic lumbar puncture, which is very painful. Belief that r-HAT is caused by witchcraft still prevails, which also delays initiation of treatment. The delivery of r-HAT services is also affected by the transfer of trained health workers to other locations. Conclusions/SignificanceAccess to r-HAT services, including treatment, could improve if community members were sensitized about the causes, signs and symptoms of the disease, and the fact that it can be effectively treated at hospital but not by traditional healers. Provision of treatment for r-HAT by health facilities around the VMWR would eliminate transport costs for patients and their guardians. Author SummarySince 2019, Malawi has reported the highest numbers of cases of rhodesiense human African trypanosomiasis. This study found that patients and their families experience many challenges in seeking health care: the disease is misdiagnosed as malaria, leading to patients receiving the wrong treatment and late initiation of the right treatment; beliefs in witchcraft cause delays as patients seek treatment from traditional healers; high levels of poverty mean that patients struggle to fund transport to the district hospital, the only facility currently providing treatment, and their upkeep during periods of hospitalization; fear of undergoing the very painful diagnostic lumbar puncture; and the transfer of well-trained health workers away from the area. There is a need to create awareness about the causes, treatment, and prevention of sleeping sickness. Once patients are diagnosed with this disease, they should be advised to seek treatment from the hospital and not from traditional healers. Patients should also be able to access treatment at the nearby health facilities rather than the district hospital, which is situated a long way from the community.