"Kala-azar is a dishonest disease": community perspectives on access barriers to visceral leishmaniasis (kala-azar) diagnosis and care in southern Gadarif, Sudan

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

    Research output: Contribution to journalA1: Web of Science-article

    Abstract

    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.

    Original languageEnglish
    JournalAmerican Journal of Tropical Medicine and Hygiene
    Volume98
    Issue number4
    Pages (from-to)1091-1101
    Number of pages11
    ISSN0002-9637
    DOIs
    Publication statusPublished - 2018

    Keywords

    • Journal Article

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