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

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...

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Published in:The American journal of tropical medicine and hygiene 2018-04, Vol.98 (4), p.1091-1101
Main Authors: Sunyoto, Temmy, Adam, Gamal K, Atia, Atia M, Hamid, Yassin, Babiker, Rabie Ali, Abdelrahman, Nugdalla, Vander Kelen, Catiane, Ritmeijer, Koert, Alcoba, Gabriel, den Boer, Margriet, Picado, Albert, Boelaert, Marleen
Format: Article
Language:English
Subjects:
Adolescent
Adult
Aged
East Africa
Female
Health Services Accessibility
Humans
Leishmaniasis
Leishmaniasis, Visceral - diagnosis
Leishmaniasis, Visceral - prevention & control
Leishmaniasis, Visceral - therapy
Leishmaniosi
Male
Middle Aged
Parasitic diseases
Patient Acceptance of Health Care
Poverty
Sudan
Young Adult
Àfrica oriental
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cited_by cdi_FETCH-LOGICAL-c457t-eabfcbf181ab7352a64ebe519bc05c42ac7474696aca84ba2c5e798756b0fa003
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container_end_page 1101
container_issue 4
container_start_page 1091
container_title The American journal of tropical medicine and hygiene
container_volume 98
creator Sunyoto, Temmy
Adam, Gamal K
Atia, Atia M
Hamid, Yassin
Babiker, Rabie Ali
Abdelrahman, Nugdalla
Vander Kelen, Catiane
Ritmeijer, Koert
Alcoba, Gabriel
den Boer, Margriet
Picado, Albert
Boelaert, Marleen
description 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.
doi_str_mv 10.4269/ajtmh.17-0872
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Gamal K. Adam, Atia M. Atia, Yassin Hamid, Rabie Ali Babiker, and Nugdalla Abdelrahman, Kala-Azar Research Center, University of Al Qadarif, Al Qadarif, Sudan, E-mails: gamalkhalid5@hotmail.com, alatiaby@yahoo.com, yassinhamid722@live.com, rabie197772@yahoo.com, and nugdalla@gmail.com. Koert Ritmeijer, Department of Public Health, Médecins Sans Frontières, Amsterdam, The Netherlands, E-mail: koert.ritmeijer@amsterdam.msf.org. Gabriel Alcoba, Médecins Sans Frontières, Geneva, Switzerland, E-mail: gabriel.alcoba@geneva.msf.org. Margriet den Boer, Médecins Sans Frontiéres, Amsterdam, The Netherlands and KalaCORE Consortium, London, United Kingdom, E-mail: margrietdenboer@gmail.com. Albert Picado, Instituto de Salud Global Barcelona, Barcelona, Spain, E-mail: albert.picado@isglobal.org. Catiane Vander Kelen and Marleen Boelaert, Department of Public Health, Prince Leopold Institute of Tropical Medicine, Antwerpen, Belgium, E-mails: cvanderkelen@itg.be and mboelaert@itg.be.</notes><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.</abstract><cop>United States</cop><pub>Institute of Tropical Medicine</pub><pmid>29488462</pmid><doi>10.4269/ajtmh.17-0872</doi><tpages>11</tpages><oa>free_for_read</oa></addata></record>
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subjects Adolescent
Adult
Aged
East Africa
Female
Health Services Accessibility
Humans
Leishmaniasis
Leishmaniasis, Visceral - diagnosis
Leishmaniasis, Visceral - prevention & control
Leishmaniasis, Visceral - therapy
Leishmaniosi
Male
Middle Aged
Parasitic diseases
Patient Acceptance of Health Care
Poverty
Sudan
Young Adult
Àfrica oriental
title " Kala-Azar is a Dishonest Disease ": Community Perspectives on Access Barriers to Visceral Leishmaniasis (Kala-Azar) Diagnosis and Care in Southern Gadarif, Sudan
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