Research Article: “Kala-Azar is a Dishonest Disease”: Community Perspectives on Access Barriers to Visceral Leishmaniasis (Kala-Azar) Diagnosis and Care in Southern Gadarif, Sudan

Date Published: April 26, 2018

Publisher: The American Society of Tropical Medicine and Hygiene

Author(s): Temmy Sunyoto, Gamal K. Adam, Atia M. Atia, Yassin Hamid, Rabie Ali Babiker, Nugdalla Abdelrahman, Catiane Vander Kelen, Koert Ritmeijer, Gabriel Alcoba, Margriet den Boer, Albert Picado, Marleen Boelaert.


Early diagnosis and treatment is the principal strategy to control visceral leishmaniasis (VL), or kala-azar in East Africa. As VL strikes remote rural, sparsely populated areas, kala-azar care might not be accessed optimally or timely. We conducted a qualitative study to explore access barriers in a longstanding kala-azar endemic area in southern Gadarif, Sudan. Former kala-azar patients or caretakers, community leaders, and health-care providers were purposively sampled and thematic data analysis was used. Our study participants revealed the multitude of difficulties faced when seeking care. The disease is well known in the area, yet misconceptions about causes and transmission persist. The care-seeking itineraries were not always straightforward: “shopping around” for treatments are common, partly linked to difficulties in diagnosing kala-azar. Kala-azar is perceived to be “hiding,” requiring multiple tests and other diseases must be treated first. Negative perceptions on quality of care in the public hospitals prevail, with the unavailability of drugs or staff as the main concern. Delay to seek care remains predominantly linked to economic constraint: albeit treatment is for free, patients have to pay out of pocket for everything else, pushing families further into poverty. Despite increased efforts to tackle the disease over the years, access to quality kala-azar care in this rural Sudanese context remains problematic. The barriers explored in this study are a compelling reminder of the need to boost efforts to address these barriers.

Partial Text

In eastern Africa, inadequate access to early diagnosis and treatment is a critical barrier to the control of visceral leishmaniasis (VL). Despite a decline in global estimates, the region continues to report high and gradually increasing number of cases.1,2 Visceral leishmaniasis, also known as kala-azar, is almost always fatal without timely treatment.3 Delays in diagnosis and treatment not only increase the risk of morbidity and mortality, but also the risk of transmission of infection to others.4 Visceral leishmaniasis control has been hampered by poorly functioning health services, but, on the other hand, increased supply does not always guarantee optimal uptake of services nor impact on the epidemiological trend.5,6 Health-seeking behavior toward kala-azar in these sparsely populated rural and underserved areas is complex.

A total of 191 individuals participated (see Table 1).

This qualitative study explored the barriers to access kala-azar care in endemic areas in southern Gadarif, Sudan, from the perspective of the people. Our findings describe the multitude of difficulties people face when seeking kala-azar care, and illustrate the prevailing hardship in a rural Sudanese context. The various barriers, as experienced and narrated by study participants, are depicted in Figure 2. Access to health care is always a multidimensional phenomenon closely related to the health-seeking behavior of the population. However, in this region the perception of illness and care is predominantly shaped by poverty and other structural problems in an extremely resource-constrained setting.

Kala-azar is an infectious disease of poverty in southern Gadarif, Sudan. Despite allegedly more efforts to control the disease, the access to quality kala-azar care remains problematic as is observed for many other health conditions in such settings.62 To alleviate suffering, the multiple barriers they face should be considered before implementing any interventions. The financial accessibility should be prioritized through a multisectoral approach designed to have wider benefit for health for all.




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