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

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.

Predicting the Impact of Intervention Strategies for Sleeping Sickness in Two High-Endemicity Health Zones of the Democratic Republic of Congo

“…Mpanya et al . [13] suggest that education is essential to improve screening participation as there are often taboos surrounding diagnosis and misinformation about treatment regimes. This may be one focus of improving screening participation and it will be vital to learn from social science to understand how best this issue can be tackled.…”

“…During stage 2 disease, defined as the time after the parasite has crossed the blood-brain barrier, patients develop severe symptoms such as behaviour disturbances, lethargy and eventually, without treatment, most cases will result in death [11]. After progressing to stage 2 patients will be more likely to present to medical facilities [12, 13]. …”

Quantitative evaluation of the strategy to eliminate human African trypanosomiasis in the Democratic Republic of Congo

“…The sensitivity and specificity of the active diagnostic algorithm were taken to be 91 % and 99.9 % respectively based on the algorithms used by MSF in the Republic of Congo, Sudan and Uganda [ 38 ]; these algorithms involve multiple diagnostics including the Card Agglutination test for trypanosomes on whole blood (CATT-WB) and parasitological examination of cerebral spinal fluid from lumbar puncture. Upon diagnosis, true positives in the model were successfully treated (and on average were hospitalised/stayed at home for six months, as per the recommendation [ 26 ]), whereas false positives remained susceptible. Passive case detection was assumed to occur at a fixed rate with individuals self-presenting to medical facilities after developing stage 2 disease; the rate was chosen such that individuals remain in stage 2 for six months on average.…”

“…For instance, it is self-evident that people with occupations that require them to spend extended periods in riverine habitats (e.g., fishermen, women carrying out domestic chores such as washing and collecting water) are more likely to be bitten than those who never enter such tsetse-infested habitats. Screening of local populations seldom exceeds 70 % despite efforts to mobilize and encourage the population to attend [ 26 , 27 ] and there are strong indications that some groups (e.g. working adults) are consistently under represented [ 27 ].…”

Centering Patient Expectations of a Novel Home-Based Oral Drug Treatment among T. b. rhodesiense Human African Trypanosomiasis Patients in Uganda

“…Recurrent themes for each topic were then identified and coded using NVIVO software (version 11), and quotes that articulated these themes were selected to summarise key points. Theoretical concepts from the fields of medical anthropology and social studies of science and innovation were drawn on to understand the social and therapeutic landscape in which HAT medicines were introduced, accessed, and taken up in local context [20][21][22]28,29,[35][36][37][38][39][40][41][42][43]. This is important in an elimination setting where treatment adherence and outcomes are essential to programme success.…”