From health advice to taboo: community perspectives on the treatment of sleeping sickness in the Democratic Republic of Congo, a qualitative study.

Alain Mpanya,Marleen Boelaert,Crispin Lumbala,Raquel Inocêncio Da Luz,David Hendrickx,Sylvain Baloji,Pascal Lutumba,Oladele B Akogun

doi:10.1371/journal.pntd.0003686

Abstract

BackgroundSocio-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.MethodsWe 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.FindingsHealth 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.DiscussionThe 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.

Highlights

Human African Trypanosomiasis (HAT), known as African sleeping sickness, is a neglected tropical disease that affects mainly poor populations living in rural areas [1,2,3]
A range of taboos are associated with HAT treatment in Democratic Republic of Congo (DRC)
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

Summary

Introduction

Human African Trypanosomiasis (HAT), known as African sleeping sickness, is a neglected tropical disease that affects mainly poor populations living in rural areas [1,2,3]. The early haemo-lymphatic stage is characterized by non-specific clinical signs [4] At this stage the infected persons do not yet feel the need to consult a health provider [4]. Stage cases are given pentamidine, while the advanced stage of the disease was until recently treated with melarsoprol, an arsenic derivative that is known under its brand name “Arsobal” in HAT endemic areas. This late stage regimen is quite toxic and can cause fatal encephalopathy in five to ten percent of treated cases, in addition to other serious adverse events [4]. Better understanding and addressing these barriers may enhance the effectiveness of HAT control.

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Results

Conclusion