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Leishmaniasis patients' pilgrimage to access health care in rural Bolivia: a qualitative study using human rights to health approach
Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Epidemiology and Global Health. Department of Biomedical Sciences Research, Faculty of Medicine, San Simon University, Cochabamba, Bolivia.
Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Epidemiology and Global Health.ORCID iD: 0000-0001-7234-3510
Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Epidemiology and Global Health.ORCID iD: 0000-0001-7087-1467
Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Epidemiology and Global Health.ORCID iD: 0000-0002-8114-4705
2019 (English)In: BMC International Health and Human Rights, ISSN 1472-698X, E-ISSN 1472-698X, Vol. 19, no 1, article id 12Article in journal (Refereed) Published
Abstract [en]

Background: Leishmaniasis is a neglected tropical disease endemic in Bolivia that disproportionately affects people with little social and political capital. Although the treatment is provided free of charge by the Bolivian government, there is an under-utilization of treatments in relation to the estimated affected population. This study explores the experiences of patients with leishmaniasis and the challenges faced when searching for diagnosis and treatment in Bolivia using a human rights approach.

Methods: We conducted open-ended interviews with 14 participants diagnosed with leishmaniasis. The qualitative data were analysed using thematic analysis and were interpreted under a human rights approach to health care.

Results: Four themes emerged during data analysis: (1) the decision for seeking a cure takes time; (2) the severity of symptoms and disruption of functioning drives the search for Western medicine; (3) the therapeutic journey between Western and traditional medicine; and (4) accessibility barriers to receive adequate medical treatment. This study showed that access to health care limitations were the most important factors that prevented patients from receiving timely diagnosis and treatment. Cultural factors played a secondary role in their decision to seek medical care.

Conclusions: Accessibility barriers resulted in a large pilgrimage between public health care and traditional medicinal treatments for patients with leishmaniasis. This pilgrimage and the related costs are important factors that determine the decision to seek health care. This study contributes to the understanding of the under-utilisation problems of medical services in leishmaniasis and other similar diseases in remote and poor populations.

Place, publisher, year, edition, pages
BioMed Central, 2019. Vol. 19, no 1, article id 12
Keywords [en]
Cutaneous leishmaniasis, human rights, health care, seeking behavior, Bolivia
National Category
Public Health, Global Health, Social Medicine and Epidemiology
Research subject
Public health
Identifiers
URN: urn:nbn:se:umu:diva-156786DOI: 10.1186/s12914-019-0196-4ISI: 000460652900002PubMedID: 30837001OAI: oai:DiVA.org:umu-156786DiVA, id: diva2:1292639
Funder
Sida - Swedish International Development Cooperation Agency, 75000554Available from: 2019-02-28 Created: 2019-02-28 Last updated: 2019-04-08Bibliographically approved
In thesis
1. The rough journey to access health care: the case of leishmaniasis in the Bolivian rainforest
Open this publication in new window or tab >>The rough journey to access health care: the case of leishmaniasis in the Bolivian rainforest
2019 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Background: Leishmaniasis is a parasitic infectious disease transmitted by vectors that cause three main clinical syndromes: cutaneous (CL), mucosal (ML), and visceral (VL). Since VL is not relevant to this thesis, only CL and ML will be further discussed. Leishmaniasis is present in 98 countries, with more than 350 million people at risk of infection. Leishmaniasis disproportionately affects poor countries and, in particular, remote areas where health services are weaker. Bolivia, a lower-middle-income country, is the fifth country with more cases in Latin America, and case detection and management is the main control strategy of the National Leishmaniasis Control Programme (NLCP). The NLCP provides free treatment to patients, which consists of systemic pentavalent antimonials (SPA) for 20 days. This treatment is highly toxic for patients and costly for the government, resulting in long periods of shortage of the drug. A good alternative to SPA is the use of intralesional pentavalent antimonials (ILPA), which are safer and have similar efficacy to SPA in treating CL. Case detection and management depend on a well-structured health-care system, and the primary level of care is responsible for this task in Bolivian endemic areas. It is well known that health-care access for leishmaniasis patients is limited but the extent and the determinant factors of this problem are unknown. The aim of this thesis is to assess health-care access among patients with leishmaniasis in a Bolivian rainforest rural area, addressing four specific questions: Who is most vulnerable to CL?; What is the extent of their lack of access to health care?; How do the dimensions of access and the quality of care influence health-care utilization in a context of vulnerability?; and how can a change in NLCP policy related to the treatment of CL improve the level of access to health care?

Methods: This thesis is based on four studies that use quantitative and qualitative methods. Data collection was conducted through surveys, in-depth interviews and revision of official documents. Sub-study 1 was based on a cross-sectional study conducted in two communities of Cochabamba and assessed risk factors for CL using multivariate analysis. Sub-study 2 used the method of capture−recapture to assess the level of under-reporting of the national register for the period of 2013−2014,  using Chapman’s formula. Sub-study 3 was conducted through in-depth interviews applied to 14 participants, using thematic analysis. Sub-study 4 was an economic evaluation that used data from surveys with physicians, official documents and key informants and compared the costs of systemic pentavalent antimonials (SPA) and intralesional pentavalent antimonials (ILPA) from the perspective of the Ministry of Health (MoH) and society. Additionally, a budget impact analysis of the implementation of ILPA in hypothetical scenarios of increasing level of demand was carried out.

Main findings: Sub-study 1 showed that gender/sex was the only statistically significant factor associated with CL, with men being the most affected group. Other classical factors, such as animal ownership, house materials and protective measures were, however, not related to CL. Sub-study 2 revealed a high level of under-reporting (73%) of CL in the study area, and this under-reporting was higher among men compared to women. Sub-study 3 showed that the lack of availability, accessibility, affordability and quality of care were the main factors that limited the access to care of CL and ML patients. In sub-study 4, the economic analysis pointed out that the use of ILPA was cost-saving for the MoH and society, and the budget analysis confirmed that the implementation of ILPA as first-line treatment was not only cost-saving for the MoH, but it would also increase the number of patients accessing the treatment.

Conclusions: The predominance of a sylvatic pattern of transmission, with men as the most affected group, demands new approaches to prevention related to occupational activities. The NLCP policy related to case management has been essential to reducing economic barriers for patients with leishmaniasis; however, there are still a considerable amount of cases who do not have access to the treatment. Lacko f health services, equipment and drugs, as well as difficulties in reaching health services, the high costs of seeking health care and the low quality of care are important factors that must be addressed to fulfil the right to health care for these patients. Finally, new therapeutic alternatives, such as ILPA, must be considered to reduce problems of affordability, adherence, as well as side effects to the treatment. This information can be used to develop targeted interventions aimed at increasing the access to health care of people with leishmaniasis in the rainforest of Bolivia.

Place, publisher, year, edition, pages
Umeå: Umeå University, 2019. p. 77
Series
Umeå University medical dissertations, ISSN 0346-6612 ; 2009
Keywords
Cutaneous leishmaniasis, Health-care access, risk factors, population surveillance, capture-recapture, health care seeking behavior, intralesional pentavalent antimonials, economic analysis, cost analysis, budget impact analysis, Bolivia, rainforest
National Category
Public Health, Global Health, Social Medicine and Epidemiology
Research subject
Public health
Identifiers
urn:nbn:se:umu:diva-157113 (URN)978-91-7855-013-5 (ISBN)
Public defence
2019-04-05, Hörsal D, Unod T9, Norrlands universitetssjukhus, Umeå, 09:00 (English)
Opponent
Supervisors
Available from: 2019-03-15 Created: 2019-03-11 Last updated: 2019-03-14Bibliographically approved

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Eid, DanielSan Sebastian, MiguelHurtig, Anna-KarinGoicolea, Isabel

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