Whose Elimination? Frontline Workers’ Perspectives on the Elimination of the Human African Trypanosomiasis and Its Anticipated Consequences

Abstract

While academic literature has paid careful attention to the technological efforts―drugs, tests, and tools for vector control―deployed to eliminate Gambiense Human African Trypanosomiasis (HAT), the human resources and health systems dimensions of elimination are less documented. This paper analyses the perspectives and experiences of frontline nurses, technicians, and coordinators who work for the HAT programme in the former province of Bandundu in the Democratic Republic of the Congo, at the epidemic’s very heart. The research is based on 21 semi-structured interviews conducted with frontline workers in February 2018. The results highlight distinctive HAT careers as well as social elevation through specialised work. Frontline workers are concerned about changes in active screening strategies and the continued existence of the vector, which lead them to question the possibility of imminent elimination. Managers seem to anticipate a post-HAT situation and prepare for the employment of their staff; most workers see their future relatively confidently, as re-allocated to non-vertical units. The findings suggest concrete pathways for improving the effectiveness of elimination efforts: improving active screening through renewed engagements with local leaders, conceptualising horizontal integration in terms of human resources mobility, and investing more in detection and treatment activities (besides innovation).

Update of transmission modelling and projections of gambiense human African trypanosomiasis in the Mandoul focus, Chad

“…Success and speed of infection reduction are governed by a variety of factors including geographical extent of foci, tsetse habitat, strength of the local health system [ 17 ], disruptions in control activities due to political unrest, other disease outbreaks (including Ebola in Guinea [ 18 ] and coronavirus disease 2019 (COVID-19) in all settings [ 19 , 20 ]), or lack of resources [ 21 ]. For example, in the Democratic Republic of Congo (DRC) the large geographic spread of endemic gHAT foci coupled with financial and logistical constraints currently limit the capacity to perform country-wide vector control.…”

Sleeping Sickness at the Crossroads

“…However, HAT is a massively stigmatized disease, linked to many beliefs and bad spirits. Traditionally, patients after treatment were excluded from working and sexual intercourse for six months [49]. Therefore, the questions are: "will the disease be recognized by the younger physicians and nurses who have never seen a case of HAT?"…”

Communities’ Perception, Knowledge, and Practices Related to Human African Trypanosomiasis in the Democratic Republic of Congo

“…The behavior of local communities in relation to HAT control activities have been documented over the years. In DRC, during the colonial period, local communities participated in screening activities in large numbers as it was compulsory, and those who did not participate ran the risk of being arrested [ 5 ]. During the recent HAT outbreak (1990s), participation in screening was also good, but there were still those who did not want to be screened for various reasons e.g., fear of stigma, fear of being diagnosed with HIV [ 14 ], fear of undergoing treatment (especially lumbar puncture), and reluctance to observe taboos [ 3 ].…”

“…Endemicity also seems to affect local communities’ behavior. With the reduction in numbers of HAT, the perceived risk posed by the disease decreases, and as a result, local participation in screening and vector control activities reduces [ 22 ] and local leaders and community volunteers demand incentives to organize HAT control activities [ 5 ]. At a policy level, many social factors that affect behavior, such as stigma, have not been sufficiently addressed in the implementation of HAT control activities.…”