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      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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          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.

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          Most cited references 39

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          Too far to walk: maternal mortality in context.

           S Thaddeus,  D Maine (1994)
          The Prevention of Maternal Mortality Program is a collaborative effort of Columbia University's Center for Population and Family Health and multidisciplinary teams of researchers from Ghana, Nigeria and Sierra Leone. Program goals include dissemination of information to those concerned with preventing maternal deaths. This review, which presents findings from a broad body of research, is part of that activity. While there are numerous factors that contribute to maternal mortality, we focus on those that affect the interval between the onset of obstetric complication and its outcome. If prompt, adequate treatment is provided, the outcome will usually be satisfactory; therefore, the outcome is most adversely affected by delayed treatment. We examine research on the factors that: (1) delay the decision to seek care; (2) delay arrival at a health facility; and (3) delay the provision of adequate care. The literature clearly indicates that while distance and cost are major obstacles in the decision to seek care, the relationships are not simple. There is evidence that people often consider the quality of care more important than cost. These three factors--distance, cost and quality--alone do not give a full understanding of decision-making process. Their salience as obstacles is ultimately defined by illness-related factors, such as severity. Differential use of health services is also shaped by such variables as gender and socioeconomic status. Patients who make a timely decision to seek care can still experience delay, because the accessibility of health services is an acute problem in the developing world. In rural areas, a woman with an obstetric emergency may find the closest facility equipped only for basic treatments and education, and she may have no way to reach a regional center where resources exist. Finally, arriving at the facility may not lead to the immediate commencement of treatment. Shortages of qualified staff, essential drugs and supplies, coupled with administrative delays and clinical mismanagement, become documentable contributors to maternal deaths. Findings from the literature review are discussed in light of their implications for programs. Options for health programs are offered and examples of efforts to reduce maternal deaths are presented, with an emphasis on strategies to mobilize and adapt existing resources.
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            Visceral leishmaniasis: what are the needs for diagnosis, treatment and control?

            Visceral leishmaniasis (VL) is a systemic protozoan disease that is transmitted by phlebotomine sandflies. Poor and neglected populations in East Africa and the Indian sub-continent are particularly affected. Early and accurate diagnosis and treatment remain key components of VL control. In addition to improved diagnostic tests, accurate and simple tests are needed to identify treatment failures. Miltefosine, paromomycin and liposomal amphotericin B are gradually replacing pentavalent antimonials and conventional amphotericin B as the preferred treatments in some regions, but in other areas these drugs are still being evaluated in both mono- and combination therapies. New diagnostic tools and new treatment strategies will only have an impact if they are made widely available to patients.
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              Global distribution maps of the leishmaniases

              The leishmaniases are vector-borne diseases that have a broad global distribution throughout much of the Americas, Africa, and Asia. Despite representing a significant public health burden, our understanding of the global distribution of the leishmaniases remains vague, reliant upon expert opinion and limited to poor spatial resolution. A global assessment of the consensus of evidence for leishmaniasis was performed at a sub-national level by aggregating information from a variety of sources. A database of records of cutaneous and visceral leishmaniasis occurrence was compiled from published literature, online reports, strain archives, and GenBank accessions. These, with a suite of biologically relevant environmental covariates, were used in a boosted regression tree modelling framework to generate global environmental risk maps for the leishmaniases. These high-resolution evidence-based maps can help direct future surveillance activities, identify areas to target for disease control and inform future burden estimation efforts. DOI: http://dx.doi.org/10.7554/eLife.02851.001
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                Author and article information

                Journal
                Am J Trop Med Hyg
                Am. J. Trop. Med. Hyg
                tpmd
                tropmed
                The American Journal of Tropical Medicine and Hygiene
                The American Society of Tropical Medicine and Hygiene
                0002-9637
                1476-1645
                April 2018
                26 February 2018
                26 February 2018
                : 98
                : 4
                : 1091-1101
                Affiliations
                [1 ]Institute of Tropical Medicine, Antwerp, Belgium;
                [2 ]Médecins Sans Frontières Campaign for Access to Medicines, Geneva, Switzerland;
                [3 ]Faculty of Medicine, Kala-Azar Research Center, University of Gadarif, Al Qadarif, Sudan;
                [4 ]Médecins Sans Frontières, Amsterdam, The Netherlands;
                [5 ]Médecins Sans Frontières, Geneva, Switzerland;
                [6 ]KalaCORE Consortium, London, United Kingdom;
                [7 ]ISGlobal, Barcelona Institute of Global Health, Barcelona, Spain
                Author notes
                [* ]Address correspondence to Temmy Sunyoto, Institute of Tropical Medicine, 155 Nationalestraat, Antwerpen 2000, Belgium. E-mail: tsunyoto@ 123456itg.be

                Financial support: This project has received funding from the European Union’s Horizon 2020 Research and Innovation Program under the Marie Sklodowska-Curie grant agreement no. 642609.

                Authors’ addresses: Temmy Sunyoto, Department of Public Health, Instituut voor Tropische Geneeskunde, Antwerpen, Belgium, and Médecins Sans Frontières, Geneva, Switzerland, E-mail: tsunyoto@ 123456itg.be . 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@ 123456hotmail.com , alatiaby@ 123456yahoo.com , yassinhamid722@ 123456live.com , rabie197772@ 123456yahoo.com , and nugdalla@ 123456gmail.com . Koert Ritmeijer, Department of Public Health, Médecins Sans Frontières, Amsterdam, The Netherlands, E-mail: koert.ritmeijer@ 123456amsterdam.msf.org . Gabriel Alcoba, Médecins Sans Frontières, Geneva, Switzerland, E-mail: gabriel.alcoba@ 123456geneva.msf.org . Margriet den Boer, Médecins Sans Frontiéres, Amsterdam, The Netherlands and KalaCORE Consortium, London, United Kingdom, E-mail: margrietdenboer@ 123456gmail.com . Albert Picado, Instituto de Salud Global Barcelona, Barcelona, Spain, E-mail: albert.picado@ 123456isglobal.org . Catiane Vander Kelen and Marleen Boelaert, Department of Public Health, Prince Leopold Institute of Tropical Medicine, Antwerpen, Belgium, E-mails: cvanderkelen@ 123456itg.be and mboelaert@ 123456itg.be .

                Article
                tpmd170872
                10.4269/ajtmh.17-0872
                5928836
                29488462
                © The American Society of Tropical Medicine and Hygiene

                This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

                Page count
                Pages: 11
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                Infectious disease & Microbiology

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