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Volume 98, Issue 4
  • ISSN: 0002-9637
  • E-ISSN: 1476-1645

Abstract

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.

[open-access] 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.

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2018-05-26
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References

  1. World Health Organization, 2017. Weekly Epidemiological Record, Vol. 92. Geneva, Switzerland: World Health Organization. 557572.
  2. World Health Organization, 2016. Global Health Observatory. Available at: http://www.who.int/gho/neglected_diseases/leishmaniasis/en/. Accessed April 3, 2016.
  3. Chappuis F, Sundar S, Hailu A, Ghalib H, Rijal S, Peeling RW, Alvar J, Boelaert M, , 2007. Visceral leishmaniasis: what are the needs for diagnosis, treatment and control? Nat Rev Microbiol 5: S7S16.
  4. Medley GF, Hollingsworth TD, Olliaro PL, Adams ER, , 2015. Health-seeking behaviour, diagnostics and transmission dynamics in the control of visceral leishmaniasis in the Indian subcontinent. Nature 528: S102S108.
  5. Peters DH, Garg A, Bloom G, Walker DG, Brieger WR, Hafizur Rahman M, , 2008. Poverty and access to health care in developing countries. Ann N Y Acad Sci 1136: 161171.
  6. Jacobs B, Ir P, Bigdeli M, Annear PL, Van Damme W, , 2012. Addressing access barriers to health services: an analytical framework for selecting appropriate interventions in low-income Asian countries. Health Policy Plan 27: 288300.
  7. Alvar J, Yactayo S, Bern C., Leishmaniasis and poverty. Trends Parasitol 22: 552557.
  8. Diro E, Lynen L, Ritmeijer K, Boelaert M, Hailu A, van Griensven J, , 2014. Visceral leishmaniasis and HIV coinfection in east Africa. PLoS Negl Trop Dis 8: e2869.
  9. Seaman J, Mercer AJ, Sondorp HE, Herwaldt BL, , 1996. Epidemic visceral leishmaniasis in southern Sudan: treatment of severely debilitated patients under wartime conditions and with limited resources. Ann Intern Med 124: 664672.
  10. Al-Salem W, Herricks JR, Hotez PJ, , 2016. A review of visceral leishmaniasis during the conflict in South Sudan and the consequences for east African countries. Parasit Vectors 9: 460.
  11. Meheus F, Abuzaid AA, Baltussen R, Younis BM, Balasegaram M, Khalil EA, Boelaert M, Musa AM, , 2013. The economic burden of visceral leishmaniasis in Sudan: an assessment of provider and household costs. Am J Trop Med Hyg 89: 11461153.
  12. Pascual Martínez F, Picado A, Roddy P, Palma P, , 2012. Low castes have poor access to visceral leishmaniasis treatment in Bihar, India. Trop Med Int Health 17: 666673.
  13. WHO, 2016. Leishmaniasis in high-burden countries: an epidemiological update based on data reported in 2014. Wkly Epidemiol Rec 91: 287296.
  14. El-Hassan AM, Zijlstra EE, , 2001. Leishmaniasis in Sudan. Trans R Soc Trop Med Hyg 95 (Suppl 1): S27S58.
  15. Elnaiem DE, , 2011. Ecology and control of the sand fly vectors of Leishmania donovani in east Africa, with special emphasis on Phlebotomus orientalis. J Vector Ecol 36 (Suppl 1): S23S31.
  16. Malaria Consortium, 2010. Leishmaniasis Control in Eastern Africa: Past and Present Efforts and Future Needs. Situation and Gap Analysis. Leeds, United Kingdom: COMDIS.
  17. Burki T, , 2009. East African countries struggle with visceral leishmaniasis. Lancet 374: 371372.
  18. Ritmeijer K, Melaku Y, Mueller M, Kipngetich S, O’Keeffe C, Davidson RN, , 2006. Evaluation of a new recombinant K39 rapid diagnostic test for Sudanese visceral leishmaniasis. Am J Trop Med Hyg 74: 7680.
  19. Musa A, 2012. Sodium stibogluconate (ssg) & paromomycin combination compared to ssg for visceral leishmaniasis in east Africa: a randomised controlled trial. PLoS Negl Trop Dis 6: e1674.
  20. World Health Organization, 2010. Control of the Leishmaniases: Report of a Meeting of the WHO Expert Committee on the Control of Leishmaniases, March 22–26, 2010, Geneva. Geneva, Switzerland: WHO.
  21. Adam GK, Ali KM, Abdella YH, Omar SM, Ahmed MA, Abdalla TM, Ali AA, , 2016. Trend in cumulative cases and mortality rate among visceral leishmaniasis patients in eastern Sudan: a 14-year registry, 2002–2015. Int J Infect Dis 51: 8184.
  22. Pigott DM, 2014. Global distribution maps of the leishmaniases. eLife 3: e02851.
  23. Mueller YK, 2012. Burden of visceral leishmaniasis in villages of eastern Gedaref State, Sudan: an exhaustive cross-sectional survey. PLoS Negl Trop Dis 6: e1872.
  24. Alvar J, Vélez ID, Bern C, Herrero M, Desjeux P, Cano J, Jannin J, Boer M, WHO Leishmaniasis Control Team; , 2012. Leishmaniasis worldwide and global estimates of its incidence. PLoS One 7: e35671.
  25. World Health Organization, 2015. Visceral Leishmaniasis: Control Strategies and Epidemiological Situation Update in East Africa: Report of a WHO Bi-Regional Consultation Addis Ababa, Ethiopia, March 9–11, 2015. Geneva, Switzerland: WHO.
  26. Atia AM, 2015. Sodium stibogluconate and paromomycin for treating visceral leishmaniasis under routine conditions in eastern Sudan. Trop Med Int Health 20: 16741684.
  27. den Boer M, Argaw D, Jannin J, Alvar J, , 2011. Leishmaniasis impact and treatment access. Clin Microbiol Infect 17: 14711477.
  28. Gerstl S, Amsalu R, Ritmeijer K, , 2006. Accessibility of diagnostic and treatment centres for visceral leishmaniasis in Gedaref State, northern Sudan. Trop Med Int Health 11: 167175.
  29. Ibrahim ME, 1999. Kala-azar in a high transmission focus: an ethnic and geographic dimension. Am J Trop Med Hyg 61: 941944.
  30. Bucheton B, Kheir MM, El-Safi SH, Hammad A, Mergani A, Mary C, Abel L, Dessein A, , 2002. The interplay between environmental and host factors during an outbreak of visceral leishmaniasis in eastern Sudan. Microbes Infect 4: 14491457.
  31. Thaddeus S, Maine D, , 1994. Too far to walk: maternal mortality in context. Soc Sci Med 38: 10911110.
  32. Aday LA, Andersen R, , 1974. A framework for the study of access to medical care. Health Serv Res 9: 208220.
  33. Andersen RM, , 1995. Revisiting the behavioral model and access to medical care: does it matter? J Health Soc Behav 36: 110.
  34. Sudan Central Bureau of Statistic, 2008. Sudan National Population and Housing Census. Available at: http://www.cbs.gov.sd/en/files.php?id=7#&panel1-5. Accessed August 1, 2016.
  35. Miller C, , 2005. Power, land and ethnicity in the Kassala-Gedaref States. Land, Ethnicity and Political Legitimacy in Eastern Sudan. Le Caire: Cedej, 3–58.
  36. Miller C, Manga AAA, , 2005. The West African communities in Gedaref State: processes of settlement and local integration. Miller C, ed. Land, Ethnicity And Political Legitimacy In Eastern Sudan. Cairo, Egypt: CEDEJ, 375–424.
  37. Sudan Central Bureau of Statistics, 2009. Sudan National Baseline Household Survey 2009. Available at: http://ghdx.healthdata.org/record/sudan-north-national-baseline-household-survey-nbhs-2009. Accessed August 1, 2016.
  38. Mays N, Pope C, , 2000. Assessing quality in qualitative research. BMJ 320: 50.
  39. Braun V, Clarke V, , 2006. Using thematic analysis in psychology. Qual Res Psychol 3: 77101.
  40. Braun V, Clarke V, , 2014. What can “thematic analysis” offer health and wellbeing researchers? Int J Qual Stud Health Well-being 9: 26152.
  41. Khatri RB, Dangi TP, Gautam R, Shrestha KN, Homer CSE, , 2017. Barriers to utilization of childbirth services of a rural birthing center in Nepal: a qualitative study. PLoS One 12: e0177602.
  42. Phillips KA, Morrison KR, Andersen R, Aday LA, , 1998. Understanding the context of healthcare utilization: assessing environmental and provider-related variables in the behavioral model of utilization. Health Serv Res 33: 571596.
  43. Posse M, Meheus F, van Asten H, van der Ven A, Baltussen R, , 2008. Barriers to access to antiretroviral treatment in developing countries: a review. Trop Med Int Health 13: 904913.
  44. Long Q, Li Y, Wang Y, Yue Y, Tang C, Tang S, Squire SB, Tolhurst R, , 2008. Barriers to accessing TB diagnosis for rural-to-urban migrants with chronic cough in Chongqing, China: a mixed methods study. BMC Health Serv Res 8: 202.
  45. Serizawa A, Ito K, Algaddal AH, Eltaybe RAM, , 2014. Cultural perceptions and health behaviors related to safe motherhood among village women in eastern Sudan: ethnographic study. Int J Nurs Stud 51: 572581.
  46. Nackers F, 2015. Determinants of visceral leishmaniasis: a case-control study in Gedaref State, Sudan. PLoS Negl Trop Dis 9: 116.
  47. Thornton S, Wasan K, Piecuch A, Lynd L, Wasan E, , 2010. Barriers to treatment for visceral leishmaniasis in hyperendemic areas: India, Bangladesh, Nepal, Brazil and Sudan. Drug Dev Ind Pharm 36: 13121319.
  48. Ensor T, Cooper S, , 2004. Overcoming barriers to health service access: influencing the demand side. Health Policy Plan 19: 6979.
  49. Ahluwalia I, 2003. Visceral leishmaniasis: consequences of a neglected disease in a Bangladeshi community. Am J Trop Med Hyg 69: 624628.
  50. Alemu A, Alemu A, Esmael N, Dessie Y, Hamdu K, Mathewos B, Birhan W, , 2013. Knowledge, attitude and practices related to visceral leishmaniasis among residents in Addis Zemen town, South Gondar, northwest Ethiopia. BMC Public Heal Heal 13: 382.
  51. Lopez-Perea N, Sordo L, Gadisa E, Cruz I, Hailu T, Moreno J, Aseffa A, Cañavate C, Custodio E, , 2014. Knowledge, attitudes and practices related to visceral leishmaniasis in rural communities of Amhara State: a longitudinal study in northwest Ethiopia. PLoS Negl Trop Dis 8: e2799.
  52. Elnaiem DE, Mukhawi AM, Hassan MM, Osman ME, Osman OF, Abdeen MS, Abdel Raheem MA, , 2003. Factors affecting variations in exposure to infections by Leishmania donovani in eastern Sudan. East Mediterr Health J 9: 827836.
  53. Ritmeijer K, Davies C, Van Zorge R, Wang SJ, Schorscher J, Dongu’du SI, Davidson RN, , 2007. Evaluation of a mass distribution programme for fine-mesh impregnated bednets against visceral leishmaniasis in eastern Sudan. Trop Med Int Health 12: 404414.
  54. Kleinman A, , 2010. Four social theories for global health. Lancet 375: 15181519.
  55. Foster GM, , 1976. Disease etiologies in non-western medical systems. Am Anthropol 78: 773782.
  56. van den Bogaart E, 2013. Concomitant malaria among visceral leishmaniasis in-patients from Gedarif and Sennar States, Sudan: a retrospective case-control study. BMC Public Health 13: 332.
  57. Mpanya A, Hendrickx D, Baloji S, Lumbala C, da Luz RI, Boelaert M, Lutumba P, , 2015. From health advice to taboo: community perspectives on the treatment of sleeping sickness in the Democratic Republic of Congo, a qualitative study. PLoS Negl Trop Dis 9: e0003686.
  58. Salih NA, 2014. Liposomal amphotericin B for complicated visceral leishmaniasis (kala-azar) in eastern Sudan: how effective is treatment for this neglected disease? Trop Med Int Health 19: 146152.
  59. World Bank, 2011. A Poverty Profile of the Northern States of Sudan. Available at: http://siteresources.worldbank.org/INTAFRICA/Resources/257994-1348760177420/a-poverty-profile-for-the-northern-states-of-sudan-may-2011.pdf. Accessed September 1, 2017.
  60. KalaCORE, 2017. Cross-sectional Surveys In Bangladesh, India, Ethiopia & Sudan: Understanding Treatment Seeking & Household Economic Burden For VL Patients. Available at: http://www.kalacore.org/sites/default/files/content/resource/files/KalaCORE%20Survey%20WL6.pdf. Accessed June 15, 2017.
  61. KalaCORE, 2017. Visceral Leishmaniasis Treatment Access - The Reality On The Ground In Sudan. Available at: http://www.kalacore.org/sites/default/files/content/resource/files/The%20reality%20on%20the%20ground%20in%20Sudan%2 0_AtiaAlatiaby_WL6_2.pdf. Accessed June 15, 2017.
  62. Elmusharaf K, Byrne E, AbuAgla A, AbdelRahim A, Manandhar M, Sondorp E, O’Donovan D, , 2017. Patterns and determinants of pathways to reach comprehensive emergency obstetric and neonatal care (CEmONC) in South Sudan: qualitative diagrammatic pathway analysis. BMC Pregnancy Childbirth 17: 278.
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  • Received : 09 Nov 2017
  • Accepted : 03 Jan 2018

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