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Chagas, Risk and Health Seeking among Bolivian Women in Catalonia
Abstract
In this article, we explore relationships between risk and emotions among Bolivian women living with Chagas disease, and the implications of this for their diagnosis and treatment in Catalonia, Spain. Here, risk is a social phenomenon, while emotions are conceived as embedded in the sociocultural and relational world. Emotions play key risk-related roles as both a cause and consequence of Chagas disease, are the basis of health practices, and allow us to link risk to wider social inequalities. The way we conceive emotions is crucial both theorically and practically.
... For instance, Valdez-Tah describes how a positive diagnosis disrupts the sense of normalcy in the lives of immigrants in California (47). The phenomenon of indeterminate T. cruzi infection as a latent risk, and its impact on emotions and health-seeking, is discussed in-depth in Ventura-Garcia's study among Bolivian women in Catalonia, Spain (48). ...
Background: Transnational immigrants are particularly impactedbyneglecteddiseases,
which take a heavy biological, social, and emotional toll in these marginalized
communities. Chagas disease has transformed from an exclusively rural to an
increasingly urban phenomenon encompassing non-endemic areas in Latin America.
Methods: Through semi-structured interviews, we investigated representations of
Chagas disease in Bolivian immigrants in São Paulo, Brazil. Between August and
September 2015, 27 adult migrants were interviewed, 11 of them with Chagas
disease. We explored problems of access to health services and essential
knowledge about the disease, as well as related conceptions and health practices.
Results: Participants constructed social representations of Chagas through interactions
with family and social networks, drawing on earlier experiences in Bolivia. Diagnosis often
provoked fear, and participants faced barriers to care based on language differences and
uncertainties about the disease and treatment options. Healthcare personnel played an
important role in alleviating concerns and facilitating access to information.
Discussion: The complex intersection of migration and neglected diseases creates
challenges for local and national health programs, requiring innovative responses
incorporating the perspectives and needs of the often vulnerable affected communities.
... Furthermore, they require a qualitative evaluation of policies and programs, the identification of health seeking behaviors, and the design of transnational approaches to understanding the social phenomenon across borders [10]. The social determinants of Chagas disease have been described by various authors in different countries, such as Bolivia, Argentina, Brazil, United States, Spain, and others [3,[10][11][12][56][57][58][59]. Even though national and local contexts have their own particularities, many of these social determinants are common between endemic and non-endemic countries, and across urban and rural areas [10]. ...
Introduction
Chagas disease is caused by the Trypanosoma cruzi infection. It is a neglected tropical disease with considerable impact on the physical, psychological, familiar, and social spheres. The Valle Alto of Cochabamba is a hyperendemic region of Bolivia where efforts to control the transmission of the disease have progressed over the years. However, many challenges remain, above all, timely detection and health-care access.
Methods
Following the Science Shop process, this bottom-up research emerged with the participation of the civil society from Valle Alto and representatives of the Association of Corazones Unidos por el Chagas from Cochabamba. The aim of this study is to explore the social determinants in the living realities of those affected by Chagas disease or the silent infection and how families in the Valle Alto of Cochabamba cope with it. An interdisciplinary research team conducted a case study of the life stories of three families using information from in-depth interviews and performed a descriptive qualitative content analysis and triangulation processes.
Findings
Findings provide insights into social circumstances of the research subjects’ lives; particularly, on how exposure to Trypanosoma cruzi infection affects their daily lives in terms of seeking comprehensive health care. Research subjects revealed needs and shared their experiences, thus providing an understanding of the complexity of Chagas disease from the socioeconomic, sociocultural, political, and biomedical perspectives. Results enlighten on three dimensions: structural, psychosocial, and plural health system. The diverse perceptions and attitudes toward Chagas within families, including the denial of its existence, are remarkable as gender and ethnocultural aspects. Findings support recommendations to various stakeholders and translation materials.
Conclusions
Intersectional disease management and community involvement are essential for deciding the most appropriate and effective actions. Education, detection, health care, and social programs engaging family units ought to be the pillars of a promising approach.
Resumen. El tratamiento farmacológico para el Chagas se ha resituado en el centro de los debates científicos y la práctica clínica. Sin embargo, las tasas de tratamiento de la infección son bajas a nivel mundial. A partir de un estudio etnográfico sobre la experiencia de la eficacia del fármaco parasiticida entre mujeres de origen boliviano y residentes en Cataluña, en este artículo me propongo explorar la problematización que se hace del infra diagnóstico, y cómo la interpretación sociocultural puede facilitarnos la comprensión de los usos que se hacen del tratamiento farmacológico y la gestión de la condición. Finalmente, sugiero la necesidad de reflexionar acerca de la práctica clínica y el rol del tratamiento parasiticida, a la luz de las experiencias vividas por estas mujeres.
Abstract. The pharmacological treatment for Chagas has been recently ubicated at the center of scientific debates and clinical practice. However, detection and treatment rates are low globally. Based on an ethnographic study on the experience of the effectiveness of the parasiticide drug among women of Bolivian origin who reside in Catalonia, I explore the problematization of undertreatment, and how the sociocultural interpretation can facilitate the understanding of the uses these women make of drug treatment and the management of the condition. Finally, I suggest the need to think about the clinical practice and the role of the parasiticide treatment, in the light of the experiences lived by these women.
Drawing on observation-based ethnography, interviews of health personnel and document review, this article describes and examines how, in clinical handling of Chagas disease, infection is treated as latent risk. It suggests that how this risk is managed has enabled a clinical practice to be conducted among people classified as at the indeterminate stage, by adding a dimension of possibility (Is it going to happen?) and potentiality (When and where?). This allows measures to be taken, including administration of medication or permanent monitoring. The reification of latent risk as a phenomenon that is manageable through a process of medicalisation engages, in turn, with other conceptions and specific experiences of risk among the affected groups. Framing the clinical practices deployed to address this risk as objects of study is a first step towards being able to describe and include them concretely in health system organisation.
A través de una etnografía basada en la observación, entrevistas a profesionales y el vaciado de documentación, en este artículo describo y analizo cómo, en la práctica clínica del Chagas, la infección es tratada como un riesgo latente. Sugiero que la gestión que se hace de este riesgo ha posibilitado la práctica clínica entre las personas clasificadas en la etapa indeterminada, añadiendo una dimensión de posibilidad (¿va a pasar?) y de potencialidad (¿cuándo y dónde?) que permite tomar acciones tales como la administración de un medicamento o una monitorización permanente. La reificación del riesgo latente como fenómeno gestionable a través de un proceso de medicalización se articula, a su vez, con otras concepciones y experiencias concretas del riesgo entre los grupos afectados. Situar la práctica clínica de dicho riesgo como objeto de estudio es un primer paso para poderlas describir e incluir como realidades en la organización del sistema de salud.
Background
It is estimated that around 52,000 people live with Chagas in Spain, but only 10% have been diagnosed. Migrants from Bolivia bear the burden of Chagas infection in Spain. However, little is known about their current management of Chagas diagnosis and treatment patterns. This study aimed to assess the Chagas related disease perception and health behaviour of Bolivians living in Madrid.
Methods and principal findings
For a first time, a cross-sectional survey about Chagas’ knowledges and practices was carried out in Madrid, Spain. A total of 376 Bolivians were interviewed about their Chagas health-seeking behaviour. Differences between men and women were assessed Most of Bolivians living in Madrid have access to the public health services. 44% of Bolivians included in the survey had a Chagas screening test done. However, while women did their test for Chagas mostly at hospital (59.2%), men also used the community campaigns (17.5%) and blood banks (14.3%). The prevalence reported among Bolivians tested was 27.7%. Unfortunately, more than half of those reporting a positive test for Chagas did not begin or completed treatment. Only 45.7% of positives reported having had their children tested for Chagas.
Conclusions
Despite the increase in the number of Chagas diagnoses done in Madrid, the number of Bolivians who tested positive and then started or completed treatment remains very low. The fact that most Bolivians’ access to the health system is through the primary healthcare services should be considered for improving management of cases and follow-up of treatment adherence. Local and national protocol establishing guidelines for the screening and treatment of Chagas disease would help improving case detection and management at all levels of the healthcare system.
The analysis of the scientific and technical conceptualization of latent risk and that of the experience of women who have migrated from Bolivia and who currently live in Catalonia questions the distinction and the limits between expert and lay knowledge and practices. The research combines a classic ethnographic method with other paths of knowledge, where the experiences and the corporality of the researcher are included as a methodological tool, leading to an emphasis on emotions and risk articulations. Taking this into consideration, I delve into the cultures of risk that emerge from specific contexts and which are based on different ways of knowing. In addition, I examine in depth the articulation of preventive and therapeutic practices that stem from this, producing new and dynamic corporalities. The analysis demonstrates that talking about risk means making reference to positioned bodies, porous to the social world in which they are embedded. On the one hand, while in the biomedical field risk is based on statistic principles, which are reinterpreted in the clinical field, for women risk responds to identities, structural positions and biographical experiences where emotions play a central role, understood as the result of the embodiment of relational processes and synthesized in the emic concept of suffering. On the other hand, whilst in the scientific and technical field emotions are considered an impediment, women’s narratives allow the establishment of articulations with the social world from the production and reproduction of corporalities arising from within the interrelationship between, for example, the diagnosis and health monitoring processes, migratory goals, pharmaceuticals or the curtains of vinchuca bugs swarming down the walls of dwellings. Finally, I consider the transdisciplinary approach to be the one best able to address Chagas disease as a biosocial phenomenon in all its complexity.
L’anàlisi de la conceptualització científico-tècnica del risc latent i de la vivència al respecte d’unes dones migrades de Bolívia i residents a Catalunya qüestiona la diferenciació i els límits entre els coneixements i pràctiques expertes i profanes en relació al risc. La investigació combina el mètode etnogràfic clàssic amb altres trajectòries de coneixement en què el marc vital i corporal de la investigadora queden incloses com una eina metodològica més, que porta a emfasitzar les articulacions entre les emocions i el risc. Reflexionant al respecte, aprofundeixo en les cultures del risc sorgides de contextos específics i fonamentades en diferents formes de coneixement, així com en l’articulació de les pràctiques preventives i terapèutiques que en deriven, i que produeixen noves i dinàmiques corporalitats. L’anàlisi demostra que no podem parlar de risc sense parlar de cossos posicionats i porosos al món social en què estan immersos. Per una banda, si bé en el camp biomèdic el risc es fonamenta en uns principis probabilístics reinterpretats en el camp clínic, per a aquestes dones els riscos responen a identitats, posicions estructurals que condicionen les possibilitats de gestionar la salut i experiències biogràfiques en què les emocions, com a resultat de la incorporació dels processos relacionals i condensades en la noció emic de sufrimiento, juguen un rol central. Per altra banda, si en el camp científico-tècnic les emocions es plantegen generalment com un impediment, en les narratives de les dones ens permeten traçar les articulacions amb el món social a partir de la producció i reproducció de les corporalitats sorgides en les interrelacions que s’estableixen amb, per exemple, el procés diagnòstic i de seguiment clínic, els objectius migratoris, el fàrmac o les cortines de vinchuques. Finalment, reivindico un enfoc transdisciplinar capaç d’abordar el Chagas en tota la seva complexitat com a fenomen biosocial.
Purpose of Review
Chagas disease (CD) is endemic to much of Latin America, but also present in the United States (U.S.). Following a lengthy asymptomatic period, CD produces serious cardiac or gastrointestinal complications in 30–40% of people. Less than 1% of the estimated six million cases in the Americas, including 326,000–347,000 in the U.S., are diagnosed. Infected persons are typically unaware and the bulk of clinicians are unfamiliar with current treatment guidelines. This review provides U.S. and other clinicians with the latest knowledge of CD treatment.
Recent Findings
Chagas cardiomyopathy (CCM) causes severe fibrosis and autonomic damage in the myocardium. Eliminating the parasite through antitrypanosomal therapy with benznidazole, a nitroimidazole derivative or nifurtimox, a nitrofuran compound, potentially prevents heart failure and other sequelae of advanced CCM. Benznidazole, recently approved by the U.S. Food and Drug Administration (FDA) for children 2–12 years old, is the first-line therapy; optimal dosages are currently being studied. Antitrypanosomal therapy prevents congenital transmission; produces high cure rates for acute, congenital, and early chronic cases; and improves clinical outcomes in adult chronic indeterminate cases. However, this benefit was not observed in a large clinical trial that included patients with advanced CCM.
Summary
Treatment with antitrypanosomal drugs can cure CD in acute, congenital, and early chronic cases and provides improved clinical outcomes for chronic indeterminate cases. This treatment should be offered as early as possible, before advanced CCM develops.
Chagas disease (CD) affects > 6 million people globally, including > 300,000 in the United States. Although early detection and etiological treatment prevents chronic complications from CD, < 1% of U.S. cases have been diagnosed and treated. This study explores access to etiological treatment from the perspective of patients with CD. In semi-structured interviews with 50 Latin American-born patients of the Center of Excellence for Chagas Disease at the Olive View-UCLA Medical Center, we collected demographic information and asked patients about their experiences managing the disease and accessing treatment. Patients were highly marginalized, with 63.4% living below the U.S. poverty line, 60% lacking a high school education, and 70% relying on Medicaid or similar local programs. The main barriers to accessing health care for CD were lack of providers, precarious insurance coverage, low provider awareness, transportation difficulties, and limited time off. Increasing access to diagnosis and treatment will not only require a dramatic increase in provider and public education but also development of programs which are financially, linguistically, politically, and geographically accessible to patients.
Background:
In Europe, Spain has the highest number of people with Chagas disease (CD). Bolivian migrants account for 81% of the reported cases. One of the priorities in controlling the disease is prevention of mother-to-child transmission. Despite under-diagnosis in Spain being estimated at 90%, there are currently few studies that explore the social and cultural dimensions of this disease.
Objective:
The aim of this study was to explore the knowledge and experiences of Bolivian women with CD, in order to generate a useful understanding for the design and implementation of public health initiatives.
Design:
Qualitative study based on semi-structured interviews, triangular groups, and field notes.
Participants:
Fourteen Bolivian women with CD living in Madrid.
Results:
The participants were aware that the disease was transmitted through the vector, that it could be asymptomatic, and that it could also be associated with sudden death by heart failure. They opined that the treatment as such could not cure the disease but only slow it down. There was a sense of indifference along with a lack of understanding of the risk of contracting the disease. Participants who presented with symptoms, or those with relatives suffering from the disease, were concerned about fatalities, cardiac problems, and possible vertical transmission. There was also a fear of being rejected by others. The disease was described as something that affected a large number of people but only showed up in a few cases and that too after many years. There was a widespread assumption that it was better not to know because doing so, allows the disease to take hold.
Conclusions:
Disease risk perception was very low in Bolivian women living in Madrid. This factor, together with the fear of being screened, may be contributing to the current rate of under-diagnosis.
Global processes have brought about a substantial change in the epidemiological landscape of Chagas disease, spreading it to non-endemic areas. Italy is the second country in Europe in terms of Latin American migrants and expected infection rate. Given that scenario, the Bologna University Teaching Hospital undertaken a study aimed at providing preliminary data on the prevalence and investigating the knowledge and the subjective perceptions of Chagas disease, migration pathways and other relevant ill-health experiences. A cross-sectional study was undertaken in association with an ethnographic research. Between November 2010 and May 2013 Chagas disease testing was offered to people who attended the hospital and data were collected to investigate the broader socio-demographic and cultural factors. 151 individuals were screened for anti T. cruzi antibodies; 12 of them, 10 Bolivians and 2 Argentinians, were seroreactive, resulting in an overall prevalence of 7.94 %. Both the quantitative and the qualitative analysis revealed a degree of heterogeneity in terms of knowledge and perceptions of the disease as well as of migration pathways. The results are comparable with those reported by previous studies with similar characteristics and highlight the relevance of such public health issue in a non-endemic context. Moreover, the interdisciplinary approach has greatly helped to unveil the complex social and cultural implications of Chagas disease, to explain the subjective ill-health experiences, and to understand the ways in which the broader socio-economic and cultural context affects an intervention and its potential for success or failure.
Risk and resilience research articulates major explanatory frameworks regarding the persistence of health disparities. Specifically, scholars have advocated a sophisticated knowledge of risk, a more grounded understanding of resilience, and comprehensive and meaningful measurements of risk and resilience pathways across cultures. The goal is to operationalize research issues into sustainable health practice and equity-focused policy. This article synthesizes current understandings on risk and resilience from the lens of medical anthropology: It reviews key insights gained from the standpoint of cultural narratives, political economy, and life history theory, as well as current shortcomings. The emergent literature on health-related risk and resilience is breathing new life into collaboration and dialogue across diverse fields of research and policy.
Chagas disease is caused by the protozoan Trypanosoma cruzi. Although it is commonly transmitted by an insect vector in continental Latin-America, in recent decades, due migration, has been diagnosed in other countries such Spain, the European country with a largest immigrant population of Latin American. For a long time, the patient remains asymptomatic, but some years after this stage, the symptoms can be serious (dilated cardiomyopathy, megacolon, megaesophagus). In addition, detection in pregnant women has a high priority because of the route of vertical transmission. Several specific guidelines about Chagas disease has been developed on the Banks of blood, maternal hospitals, HIV co-infection, organ transplant. But due to the detection of lack of information to primary care professionals, we consider to will be useful this document written and agreed to by family phisicians, pediatricians and specialists in International Health.
Copyright © 2014 Elsevier España, S.L.U. All rights reserved.
Background
Digestive damage due to Chagas disease (CD) occurs in 15–20% of patients diagnosed as a result of peristaltic dysfunction in some endemic areas. The symptoms of chronic digestive CD are non-specific, and there are numerous confounders. Diagnosis of CD may easily be missed if symptoms are not evaluated by a well trained physician. Regular tests, as barium contrast examinations, probably lack the necessary sensitivity to detect early digestive damage.
Methods
71 individuals with T. cruzi infection (G1) and 18 without (G2) coming from Latin American countries were analyzed. They were asked for clinical and epidemiological data, changes in dietary habits, and history targeting digestive and cardiac CD symptoms. Serological tests for T. cruzi, barium swallow, barium enema, an urea breath test, and esophageal manometry were requested for all patients.
Principal findings
G1 and G2 patients did not show differences in lifestyle and past history. Fifteen (21.1%) of G1 had digestive involvement. Following Rezende criteria, esophagopathy was observed in 8 patients in G1 (11.3%) and in none of those in G2. Manometry disorders were recorded in 34 G1 patients and in six in G2. Isolated hypotensive lower esophageal sphincter (LES) was found in sixteen G1 patients (23.9%) and four G2 patients (28.8%). Achalasia was observed in two G1 patients. Among G1 patients, ineffective esophageal motility was seen in six (five with symptoms), diffuse esophageal spasm in two (one with dysphagia and regurgitation), and nutcracker esophagus in three (all with symptoms). There were six patients with hypertonic upper esophageal sphincter (UES) among G1. Following Ximenes criteria, megacolon was found in ten G1 patients (13.9%), and in none of the G2 patients.
Conclusions
The prevalence of digestive chronic CD in our series was 21.1%. Dysphagia is a non-pathognomonic symptom of CD, but a good marker of early esophageal involvement. Manometry could be a useful diagnostic test in selected cases, mainly in patients with T. cruzi infection and dysphagia in whose situation barium swallow does not evidence alterations. Constipation is a common but non-specific symptom that can be easily managed. Testing for CD is mandatory in a patient from Latin America with constipation or dysphagia, and if diagnosis is confirmed, megacolon and esophageal involvement should be investigated.
Background: Health professionals who care for patients with imported diseases often lack enough training. The aim of the study is to assess the knowledge of Chagas disease among doctors and nurses attending at-risk pregnant women in our province. Method: descriptive study through a performed anonymous and voluntary knowledge questionnaire for 278 physicians and nurses working at maternity and children's health services in the three hospitals in the province. In Poniente Hospital was established in 2007 a program of screening for the disease in pregnant women. For statistical analysis, quantitative variables were described using the mean and standard deviation. For comparison of qualitative variables we used the chi-square test or Fisher exact test as appropriate. Differences in age and years of experience depending on the hospital were measured by Brown-Forsythe robust test. Results: 116 (41.7%) professionals agreed to participate in the study. 80 (69%) were women and 36 (31%) men, mean age 36.78 years. By professional categories, physicians have a mean of 73.9% correct responses, the nurses 50.7%. Poniente Hospital had the highest percentage of correct answers on aspects of the geographical distribution of the disease (73.7%), the mechanisms of transmission (86%) and diagnosis (82.5%). Conclusions: The Poniente Hospital professionals generally have a better Knowledge about Chagas disease compared with two other professionals hospitals, which probably is related to the existence of the screening program for the disease.
Background. The prevalence of Chagas disease in endemic countries varies with the kind of vector involved and the socioeconomic conditions of the population of origin. Due to recent immigration it is an emerging public health problem in Europe, especially in those countries which receive immigrant populations with a high prevalence of carriers. The study reviews the impact of the disease on Bolivian immigrants living in Europe, the preventive measures and regulations applied in European countries, and their repercussion on possible stigmatization of certain population groups. Methods. The Bolivian immigrant population resident in 2012 was estimated and the affected population in different European countries was calculated with data on carrier prevalence that were recently published. The preventive measures and regulations available in Europe were also reviewed. MEDLINE-PubMed, GoPubMed, and Embase were consulted for the literature review. Results. The Bolivian immigrant population has the highest prevalence of Chagas carriers (6.7%-25%) compared to the overall Latin American population (1.3%-2.4%). Only in Spain, France, Belgium, UK, Portugal, Italy, Switzerland, The Netherlands, and Germany, preventive measures are applied to this population. The established regulations are insufficient and completely different criteria are applied in the different countries and this could reflect a certain degree of stigmatization.
Treatment for Chagas disease with currently available medications is recommended universally only for acute cases (all ages)
and for children up to 14 years old. The World Health Organization, however, also recommends specific antiparasite treatment
for all chronic-phase Trypanosoma cruzi-infected individuals, even though in current medical practice this remains controversial, and most physicians only prescribe
palliative treatment for adult Chagas patients with dilated cardiomyopathy. The present opinion, prepared by members of the
NHEPACHA network (Nuevas Herramientas para el Diagnóstico y la Evaluación del Paciente con Enfermedad de Chagas/New Tools
for the Diagnosis and Evaluation of Chagas Disease Patients), reviews the paradigm shift based on clinical and immunological
evidence and argues in favor of antiparasitic treatment for all chronic patients. We review the tools needed to monitor therapeutic
efficacy and the potential criteria for evaluation of treatment efficacy beyond parasitological cure. Etiological treatment
should now be mandatory for all adult chronic Chagas disease patients.
While it is generally accepted in writings on the sociocultural aspects of risk that risk and emotion are interrelated, this relationship remains under-theorised. The literature on the affect heuristic model in psychology and research on voluntary risk-taking or edgework in sociology have dominated previous writings on risk and emotion. This essay draws on scholarship from affect theory, cultural studies and cultural geography to argue that both emotion and risk are inevitably and always configured via social and cultural processes and through interaction with others' bodies, material objects, space and place. Furthermore, both emotions and risk judgements and understandings, rather than being located within the individual, are fluid, shared and collective. The concept of the ‘emotion–risk assemblage’ is introduced to denote a heterogeneous configuration of ideational and material, human and non-human elements that is subject to constant flux and change. I illustrate this analysis with some observations about the emotional elements of risk in the context of public health practice. I argue that although public health discourse represents the field as dispassionately expert and rational, its practices frequently engage affective strategies that covertly, and sometimes overtly, incite or reproduce stigmatisation, marginalisation, blaming, shame, disgust, fear and exclusion of certain social groups.
According to World Health Organization (WHO) prevalence estimates, 1.1 million people in Mexico are infected with Trypanosoma cruzi, the etiologic agent of Chagas disease (CD). However, limited information is available about access to antitrypanosomal treatment. This study assesses the extent of access in Mexico, analyzes the barriers to access, and suggests strategies to overcome them.
Semi-structured in-depth interviews were conducted with 18 key informants and policymakers at the national level in Mexico. Data on CD cases, relevant policy documents and interview data were analyzed using the Flagship Framework for Pharmaceutical Policy Reform policy interventions: regulation, financing, payment, organization, and persuasion. Data showed that 3,013 cases were registered nationally from 2007-2011, representing 0.41% of total expected cases based on Mexico's national prevalence estimate. In four of five years, new registered cases were below national targets by 11-36%. Of 1,329 cases registered nationally in 2010-2011, 834 received treatment, 120 were pending treatment as of January 2012, and the treatment status of 375 was unknown. The analysis revealed that the national program mainly coordinated donation of nifurtimox and that important obstacles to access include the exclusion of antitrypanosomal medicines from the national formulary (regulation), historical exclusion of CD from the social insurance package (organization), absence of national clinical guidelines (organization), and limited provider awareness (persuasion).
Efforts to treat CD in Mexico indicate an increased commitment to addressing this disease. Access to treatment could be advanced by improving the importation process for antitrypanosomal medicines and adding them to the national formulary, increasing education for healthcare providers, and strengthening clinical guidelines. These recommendations have important implications for other countries in the region with similar problems in access to treatment for CD.
Globally, more than 10 million people are infected with Trypanosoma cruzi, which causes about 20 000 annual deaths. Although Chagas disease is endemic to certain regions of Latin America, migratory flows have enabled its expansion into areas where it was previously unknown. Economic, social and cultural factors play a significant role in its presence and perpetuation. This systematic review aims to provide a comprehensive overview of qualitative research on Chagas disease, both in endemic and non-endemic countries.
Searches were carried out in ten databases, and the bibliographies of retrieved studies were examined. Data from thirty-three identified studies were extracted, and findings were analyzed and synthesized along key themes. Themes identified for endemic countries included: socio-structural determinants of Chagas disease; health practices; biomedical conceptions of Chagas disease; patient's experience; and institutional strategies adopted. Concerning non-endemic countries, identified issues related to access to health services and health seeking.
The emergence and perpetuation of Chagas disease depends largely on socio-cultural aspects influencing health. As most interventions do not address the clinical, environmental, social and cultural aspects jointly, an explicitly multidimensional approach, incorporating the experiences of those affected is a potential tool for the development of long-term successful programs. Further research is needed to evaluate this approach.
Estudo antropológico sobre a percepção cultural de um grupo de residentes no Município de Bambuí, Minas Gerais, Brasil, em relação à experiência de doença de Chagas e ao impacto das ações de saúde na vida social. Foi realizada uma pesquisa etnográfica baseada no instrumento de entrevista aberta, buscando identificar a percepção individual de 35 habitantes de Bambuí (chagásicos e não) que viveram na região desde os anos quarenta, quando as ações de saúde foram promovidas para combater a doença de Chagas. Dentro de uma ampla análise da percepção social do efeito das ações de saúde implementadas, procurou-se observar as representações culturais do processo do adoecer. O estudo pretende contribuir para que as intervenções de saúde possam atuar de forma integral, incluindo os aspectos sócio-culturais com a população à qual se dirigem. A perspectiva cultural assume um importante papel para evitar sofrimento social.
This article examines the emotional and health impacts that immigration to Spain has on Bolivian families. We explore transnational preventive and healing activities deployed in Spain and Bolivia to allay emergent anxieties, frustrations and illnesses. Although undocumented migrants have access to a universal public health system, they adopt pluralistic approaches to healing, combining traditional and biomedical treatments. An understanding of these healing strategies requires attention to how emotions and their embodiment are experienced in the context of immigration. We propose a theoretical framework which draws upon a constructivist approach to emotions and expand its potential by linking it to influences of transnational lifestyles and bifocality. Preoccupation and sorrow are considered key etiological agents for many illnesses in the Andes and therefore migrants are particularly mindful about how their own suffering abroad affects vulnerable relatives in Bolivia. Communication between migrants and relatives is permeated by white lies, non-disclosure or blatant suppression of information about illnesses or personal difficulties. Migrants rely on particular relatives to access transnational healing methods, while simultaneously concealing information about their health from others. A migrant's health experiences are thus constrained not only by difficulties with the public health system but also by emotional considerations that span informal transnational networks.
Dialógica, etnografi a e educação em saúde Dialogics, ethnography and health education RESUMO Nos últimos anos, o método etnográfi co revelou-se como um adequado instrumento para as intervenções em saúde pública e na educação em saúde. Não obstante, seu uso contradiz determinados modelos de intervenção defi nidos como monológicos, a exemplo das campanhas de meios de comunicação de massa e as fi losofi as do "ator racional". Foram analisadas criticamente algumas bases epistemológicas desses modelos, como a unidimensionalidade na análise dos processos de saúde/doença/atendimento, a unidirecionalidade comunicativa e a hierarquia. No seu lugar, propõe-se um modelo dialógico baseado no método etnográfi co e organizado a partir dos critérios de multidimensionalidade, bidirecionalidade e simetria. A etnografi a permite melhorar a efetividade das intervenções ao fornecer uma base empírica para o desenho dos projetos e ao propiciar a participação social em saúde. ABSTRACT In recent years, the ethnographic method has been found to be an adequate instrument for public health and health education interventions. Nevertheless, its use contradicts certain intervention models, defi ned here as monologic, such as mass media campaigns and "rational actor" philosophies. Some epistemological foundations for these models were analyzed, such as the one-dimensional analysis of health/disease/care processes, the one-way communication and their hierarchical nature. In its place, a dialogic model based on the ethnographic method and organized from the criteria of multidimensionality, two-way communication and symmetry is proposed. Ethnography enables the effectiveness of interventions to be improved by providing an empirical basis for project design and allowing for social participation in health.
En este artículo presentamos elementos que surgen y forman parte de una línea de investigación sobre Chagas que viene desarrollándose desde el año 2000 (y continúa en desarrollo). A lo largo de este texto compartimos reflexiones obtenidas en el transcurso de estos años y aclaramos que, como seguimos en camino, nos encontramos aún buscando pistas y piezas que nos permitan ir armando el rompecabezas al que nos enfrentamos al comienzo del trabajo. Por estos motivos, quienes lean estas páginas no se encontrarán con un texto organizado de manera tradicional sino con una serie de apartados que pretenden ordenar de algún modo el marco y el principal interrogante donde se fundamenta esta línea de trabajo: ¿de qué hablamos cuando hablamos del Chagas?
In this essay-like article we present elements coming out of an ongoing research (on Chagas) that started about 8 years ago, in the year 2000. We share some of the thoughts developed during those years and warn the readers that, since the project is ongoing, we are still in the process of
Chagas disease affects mainly poor populations in Latin America. This review assesses the evidence on the independent risk of cardiovascular events associated with positive Chagas serology.
We searched for studies using the following outcomes: death, stroke, new onset heart failure, heart failure hospitalization or evidence of left ventricular dysfunction. Studies comparing patients with positive serology for Chagas with a control group with a follow-up longer than 1 year were selected. The Medline, Lilacs and Embase databases were searched on 21 January 2011 without restrictions.
From 5236 potentially relevant studies, 25 fulfilled the inclusion criteria. Fourteen included patients with heart failure, six with severe symptoms and nine with mild symptoms or asymptomatic patients with low ejection fraction. In four studies of patients in functional class III or IV and in three studies of patients with mild symptoms, a higher risk of death was reported among those with positive serology for Chagas. Of the 11 studies of patients without symptoms or low ejection fraction, 3 showed a higher risk of mortality related to Chagas exposure. Two of these were based on the same cohort of people aged >60 years. Overall, 8 out of the 14 heart failure studies and 2 out of the 11 heart damage studies adjusted for confounding factors.
Positive serology for Chagas is associated with a higher risk of death for patients with heart failure. However, there is little evidence to link positive serology for Chagas with cardiovascular events in asymptomatic subjects.
As an inevitable consequence of Latin American immigration to Europe, Spain and other European countries, it is necessary to confront the approach to cases of Chagas infection/disease for which, epidemiologically, there are more questions than answers. This study has aimed to describe all the Chagas-infected population in the north metropolitan area of Barcelona (406,000 inhabitants).
A prospective and multicentric study was performed in 3 hospitals and 1 International Health Unit. It included all patients with Trypanosoma cruzi positive serology, regardless of the requesting reason.Results The 139 diagnosed cases represent an annual incidence of: a) 0.68/10,000 inhabitants and, b) 73.2/10,000 immigrants coming from endemic zones. Of the patients, 80 (57.6%) had alterations in some complementary tests: cardiologic 62 (44.6%), digestive 38 (27.3%) and 20 (14.4%) both. According to the Brazilian Consensus of Chagas cardiomyopathy, they were classified as: 0=84 (60.4%); a=40 (28.7%); b1=4 (2.9%), b2=10 (7.2%) and c/d=1 (0.7%). Treatment with benznidazole (5mg/kg/24h for 60 days) was prescribed in 116 (83.4%) patients, 89 (76.7%) of whom completed it. Secondary effects were recorded in 56 (50.9%), which made it necessary to withdraw it in 21 (19.1%).
Fewer cases of Chagas infection/disease than expected have been diagnosed in the North Metropolitan area of Barcelona. The series contains a high number of patients and there may be an elevated number of immigrants from endemic zones who have the asymptomatic chronic stages of the infection and who were unaware of their condition.
A study of aggregate data collected from the literature and official sources was undertaken to estimate expected and observed prevalence of Trypanosoma cruzi infection, annual incidence of congenital transmission and rate of underdiagnosis of Chagas disease among Latin American migrants in the nine European countries with the highest prevalence of Chagas disease. Formal and informal data sources were used to estimate the population from endemic countries resident in Europe in 2009, diagnosed cases of Chagas disease and births from mothers originating from endemic countries. By 2009, 4,290 cases had been diagnosed in Europe, compared with an estimated 68,000 to 122,000 expected cases. The expected prevalence was very high in undocumented migrants (on average 45% of total expected cases) while the observed prevalence rate was 1.3 cases per 1,000 resident migrants from endemic countries. An estimated 20 to 183 babies with congenital Chagas disease are born annually in the study countries. The annual incidence rate of congenital transmission per 1,000 pregnancies in women from endemic countries was between none and three cases. The index of under diagnosis of T. cruzi infection was between 94% and 96%. Chagas disease is a public health challenge in the studied European countries. Urgent measures need to be taken to detect new cases of congenital transmission and take care of the existing cases with a focus on migrants without legal residency permit and potential difficulty accessing care.
Since the year 2000, Chagas disease, traditionally known as a rural Latin American affliction, has been rising in the ranking of international health priorities due to the growing migration flows from endemic areas to non-endemic ones. Using the example of Italy and reporting preliminary results of a study carried out in the district of Bologna, the paper will argue that a disease-centred public health approach might be inadequate when dealing with complex and uncertain situations, in which complete statistical data are not available or not reliable, and in which the involved actors, health professionals on the one side, migrants on the other, appear to be unaware of the issue, or might even be denying it. In such a context, an effective public health approach should be capable of crossing disciplinary boundaries and bridging the gap between health services and communities, as well as between health and social issues.
A abordagem antropológica foi empregada para investigar o universo de representações (maneiras de pensar) e comportamentos (maneiras de agir) associados à doença de Chagas, por um grupo de trabalhadores de um serviço público de Belo Horizonte (infectados/não infectados). Procurou-se também avaliar as repercussões deste universo de representações e comportamentos sobre a vida dos indivíduos infectados. A coleta e a análise dos dados, inspirou-se no modelo dos "sistemas de signos, significados e ações", elaborado por Corin et al. (1989, 1992). Foram entrevistados 16 informantes chave, selecionados entre os trabalhadores soro-positivos e 12 entre os trabalhadores soro-negativos, com o objetivo de comparar as maneiras de pensar e agir, predominantes nesses dois grupos. A análise dos dados, permitiu identificar diversos elementos do contexto que vêm maximizar as limitações impostas pela doença de Chagas, e que devem ser levados em conta no planejamento de campanhas educativas e na elaboração de modelos de atenção ao paciente chagásico.
Our understanding of the psychosocial and cultural dimensions of disease and illness is limited not merely by a lack of empirical knowledge but also by an inadequate medical semantics. The empiricist theories of medical language commonly employed both by comparative ethnosemantic studies and by medical theory are unable to account for the integration of illness and the language of high medical traditions into distinctive social and symbolic contexts. A semantic network analysis conceives the meaning of illness categories to be constituted not primarily as an ostensive relationship between signs and natural disease entities but as a 'syndrome' of symbols and experiences which typically 'run together' for the members of a society. Such analysis dirests our attention to the patterns of associations which provide meaning to elements of a medical lexicon and to the constitution of that meaning through the use of medical discourse to articulate distinctive configurations of social stress and to negotiate relief for the sufferer. This paper provides a critical discussion of medical semantics and develops a semantic network analysis of 'heart distress', a folk illness in Iran.
Chagas disease is a neglected tropical disease; the only viable drugs are outdated and produce frequent side effects, and the overwhelming majority of cases are undiagnosed and untreated. Globally, people encounter numerous impediments to accessing biomedical treatment for Chagas disease. However, little is known about how people with Chagas disease manage their health outside the biomedical system. In this article, I discuss knowledge of ethnomedical treatments among marginalized patients in an endemic area of Bolivia. I interviewed 68 patients, 63 (93%) of whom had positive diagnoses for Chagas disease. Participants free listed 66 ethnomedical remedies either for Chagas disease (n=39) or its cardiac symptoms. Participants stressed the accessibility of ethnomedical remedies in contrast to the multiple barriers to accessing biomedical treatment. Far from eroding in the face of globalization and sociopolitical marginalization, ethnomedical knowledge in the study area is dynamic and flexible, communicated through various channels.
PART I: CHARISMATIC TRANSFORMATIONS The Rhetoric of Transformation in Ritual Healing Embodiment as a Paradigm for Anthropology A Handmaid's Tale The Affliction of Martin PART II: NAVAJO TRANSFORMATIONS Ritual Healing and the Politics of Identity in Contemporary Navajo Society Talk to Them So That They Understand The Sore That Does Not Heal Words from the Holy People PART II: MODULATIONS OF EMBODIMENT Somatic Modes of Attention Shades of Representation and Being in Virtual Reality
Molly is 27 years old and dying from breast cancer. She first noticed a lump in her breast when she was 21. Her girlfriend urged her to see a doctor and she did. Her doctor told her not to worry — that it was probably just a cyst.
Dressler (2001:456) characterizes medical anthropology as divided between two poles: the constructivist, which focuses on the "meaning and significance that events have for people," and the structuralist, which emphasizes socioeconomic processes and relationships. This study synthesizes structuralist and constructivist perspectives by investigating how structural processes impact explanatory models of Chagas disease in a highly endemic area. The research took place from March-June 2013 through the Centro Medico Humberto Parra, a non-profit clinic servicing low income populations in Palacios, Bolivia and surrounding communities. Semistructured interviews (n = 68) and consensus analysis questionnaires (n = 48) were administered to people dealing with Chagas disease. In the interview narratives, respondents link Chagas disease with experiences of marginalization and rural poverty, and describe multilayered impediments to accessing treatment. They often view the disease as incurable, but this reflects inconsistent messages from the biomedical system. The consensus analysis results show strong agreement on knowledge of the vector, ethnomedical treatment, and structural factors related to Chagas disease. In interpreting Chagas disease, respondents account for the structural factors which place them at risk and impede access to care.
There are 300,000 estimated cases of Chagas disease in the United States but limited data on access to care. This study analyzed trends in access to care for Chagas disease in the United States and assessed the national and state barriers to access. Data on cases in blood donors and drug releases were obtained from the AABB (formerly American Association of Blood Banks) and U.S. Centers for Disease Control and Prevention (CDC), respectively. Semi-structured in-depth interviews were conducted with 30 key informants at the national level and in six states where treatment had been released. Interview responses were analyzed according to the health systems dimensions of regulation, financing, payment, organization, and persuasion. Data indicate that 1,908 cases were identified in the blood donation system from 2007 to 2013 and that CDC released 422 courses of benznidazole or nifurtimox during this period. The barriers to access at the national level include limited diagnostic and institutionalized referral and care processes, lack of financing for patient-care activities, and limited awareness and training among providers. This study demonstrates that access to treatment of Chagas disease in the United States is limited. The lack of licensing is only one of several barriers to access, highlighting the need for a health systems perspective when scaling up access to these essential medicines.
© The American Society of Tropical Medicine and Hygiene.
Introduction: the body as representation and being-in-the-world Thomas J. Csordas Part I. Paradigms and Polemics: 1. Bodies and anti-bodies: flesh and fetish in contemporary social theory Terence Turner 2. Society's body: emotion and the 'somatization' of social theory M. L. Lyon and J. M. Barbalet Part II. Form, Appearance and Movement: 3. The political economy of injury and compassion: amputees on the Thai-Cambodia border Lindsay French 4. Nurturing and negligence: working on others' bodies in Fiji Anne E. Becker 5. The silenced body - the expressive Leib: on the dialectic of mind and life in Chinese cathartic healing Thomas Ots Part III. Self, Sensibility, and Emotion: 6. Embodied metaphors: nerves as lived experience Setha M. Low 7. Bodily transactions of the passions: El Calor among Salvadoran women refugees Janis H. Jenkins and Martha Valiente 8. The embodiment of symbols and the acculturation of the anthropologist Carol Laderman Part IV. Pain and Meaning: 9. Chronic pain and the tension between the body as subject and object Jean Jackson 10. The individual in terror E. Valentine Daniel 11. Rape trauma: contexts of meaning Cathy Winkler 12. Words from the Holy People: a case study in cultural phenomenology Thomas J. Csordas.
Chagas disease, caused by the parasite Trypanosoma cruzi, is a serious health problem in Latin America and is an emerging disease in non-endemic countries. In recent decades, the disease's epidemiological profile has changed due to new patterns of immigration and successful control in its transmission, leading to the urbanization and globalization of the disease. Dilated cardiomyopathy is the most important and severe manifestation of human chronic Chagas disease and is characterized by heart failure, ventricular arrhythmias, heart blocks, thromboembolic phenomena and sudden death. This article will present an overview of the clinical and epidemiological aspects of Chagas disease. It will focus on several clinical aspects of the disease, such as chronic Chagas disease without detectable cardiac pathology, as well as dysautonomia, some specific features and the principles of treatment of chronic cardiomyopathy.
'Risk' has become one of the defining cultural characteristics of Western society at the end of the twentieth century. As in other areas of life, 'risk' has become central to discourses related to individual health; that is, risk has become a common construct around which health in Western society is described, organised, and practised, both personally and professionally. The purpose of this paper is to explore the notion of a 'phenomenology of risk' by considering the results of a preliminary study undertaken to explore the themes which emerge in women's accounts of their own individual risks for breast cancer. A second purpose is to move towards situating the phenomenology of risk within the social and political context within which individual experience occurs. To that end, this study was framed theoretically within the emerging social science literature which examines the broader social and political meanings and implications of health risk discourses. This paper demonstrates that by embodying prevailing discourses on health risks in general, and on breast cancer risk in particular, the women in this study have embodied a political rationality, which, among other things, reconstitutes them as autonomous, responsible 'entrepreneurial subjects'. The phenomenological and political implications of the findings of this study are considered.
Any thorough understanding of the modern epidemics of AIDS and tuberculosis in Haiti or elsewhere in the postcolonial world requires a thorough knowledge of history and political economy. This essay, based on over a decade of research in rural Haiti, draws on the work of Sidney Mintz and others who have linked the interpretive project of modern anthropology to a historical understanding of the large-scale social and economic structures in which affliction is embedded. The emergence and persistence of these epidemics in Haiti, where they are the leading causes of young-adult death, is rooted in the enduring effects of European expansion in the New World and in the slavery and racism with which it was associated. A syncretic and properly biosocial anthropology of these and other plagues moves us beyond noting, for example, their strong association with poverty and social inequalities to an understanding of how such inequalities are embodied as differential risk for infection and, among those already infected, for adverse outcomes including death. Since these two diseases have different modes of transmission, different pathophysiologies, and different treatments, part of the interpretive task is to link such an anthropology to epidemiology and to an understanding of differential access to new diagnostic and therapeutic tools now available to the fortunate few. (PsycINFO Database Record (c) 2012 APA, all rights reserved)
Written by leading experts in the field, Social Theories of Risk and Uncertainty is an introduction to mainstream theorizing on risk and uncertainty in sociology. Provides an overview of the historical developments and conceptual aspects of risk Identifies why theorizing on risk is necessary and highlights specific sociological contributions to this field of research Explores key topics including risk society and reflexive modernization, culture and risk, governmentality and risk, systems theory and risk, and edgework and voluntary risk taking Offers a comprehensive look at the promises, pitfalls, and perspectives of risk theorizing.
An ethnographic study of a shelter in downtown Boston for people considered homeless and mentally ill documents the way in which the category of “experience,” which many have taken to be universal and natural, is culturally and historically constituted. The residents of the shelter tend not to experience—defined here as an inwardly reflexive process that proceeds, coheres, and transforms through temporally integrative forms—but rather “struggle along” by way of an acutely tactile mode of perception that attends to episodic, temporally finite encounters. The fact that experience in the shelter is only a possibility, not a given, points to the need for a critical phenomenology that would help us to consider how this and other ways of being come about through specific social, cultural, political, and material forces.
This article explores the social theory and consequent methodology that underpins studies of transnational migration. First, we propose a social field approach to the study of migration and distinguish between ways of being and ways of belonging in that field. Second, we argue that assimilation and enduring transnational ties are neither incompatible nor binary opposites. Third, we highlight social processes and institutions that are routinely obscured by traditional migration scholarship but that become clear when we use a transnational lens. Finally, we locate our approach to migration research within a larger intellectual project, taken up by scholars of transnational processes in many fields, to rethink and reformulate the concept of society such that it is no longer automatically equated with the boundaries of a single nation-state.
Due to recent trends in migration, there are millions of people from Chagas disease-endemic countries now living in North America, Europe, Australia and Japan, including thousands of people with Trypanosoma cruzi infection. Most infected individuals are not aware of their status. Congenital, transfusion- and/or transplant-associated transmission has been documented in the United States, Spain, Canada and Switzerland; most instances likely go undetected. High priorities include the implementation of appropriate screening, evaluation and clinical management, and better assessment of the true burden associated with this disease.
Anthropological research on health-related behaviors in the United States has tended to emphasize folk illnesses among particular subcultural groups, obscuring the heterogeneity of popular culture health beliefs and practices in the lay health system. The development of theoretical models for this complex society will require research that stresses similarity as well as diversity within and between population groups. The health seeking process is proposed in this paper as a means to document natural histories of illness in any subculture. Concepts from medical anthropology and medical sociology are related to five components of health seeking -- symptom definition, illness-related shifts in role behavior, lay consultation and referral, treatment actions, and adherence. Illustrative propositions to guide further research are proposed.
Two primary hypotheses are proposed to account for pathogenesis in chronic Trypanosoma cruzi infections: that the persistence of T. cruzi at specific sites in the infected host results in chronic inflammatory reactivity and that T. cruzi infection induces immune responses which are targetted at self tissues. The data supporting parasite persistence as the primary cause of disease in T. cruzi infection have been recently reviewed and the reader is referred to this review for extensive documentation of most of the arguments outlined herein. This manuscript will briefly reiterate the main points of this previous review, adding additional data that have been presented since its publication. Then, philosophical and practical arguments on why Chagas disease should be investigated and treated as a parasitic infection and not as an autoimmune disease are presented. This is admittedly an 'opinion piece' and not a balanced review of the literature on Chagas disease. There are substantial data other than those reviewed here, which have been presented in support of the autoimmunity hypothesis. It is left to others to review that body of literature.
In this article, I take the embodied manifestations of distress across generations as the lens from which to illustrate the subtle articulations between the political restructuring of the Bolivian state and the private anxieties women experience under enduring political and economic instability. Emotions such as rage and sorrow generated by economic hardship, domestic violence, and social conflict played a fundamental role in how market- and working-class women perceived not only their own health problems but also many of the health problems that affected their infants. Mother's bodies and emotions are seen as the vectors through which gestating babies and breastfeeding infants develop transient and enduring ailments and debility.
Reduction in stroke risk may depend on the general population's knowledge of stroke. In South America, chagasic myocardiopathy is independently associated with ischemic stroke.
The aim of this study was to evaluate awareness of Chagas' disease (CD) as a stroke risk factor and to determine the frequency of stroke patients that are diagnosed as having CD after stroke.
Eighty CD stroke patients and 140 non-chagasic stroke patients (53.2% males; mean age 60 years), consecutively admitted to the hospital during 2005 were interviewed with a questionnaire. Demographic variables included age, sex, ethnicity, education, previous history of stroke, vascular risk factors, social background information and several questions regarding awareness of CD as a stroke risk factor. A logistic regression model was developed to identify social variables that could predict the risk of CD stroke.
The diagnosis of CD was established after stroke in 42.5% of CD stroke patients. Most respondents (95%) were not aware of stroke risk in CD. Chagasic patients had the lowest rate of awareness about stroke risk (2.5 vs 7.1%), although they had the greatest knowledge about the kissing bug vector (83.7 vs 62.1%; p<0.001). The main social variables associated with CD stroke were: having family members with Chagas' disease (p<0.0001; odds ratio 10.1; 95% CI 3.6-16.1) and a past history of living in a mud-brick house during childhood (p<0.001; odds ratio 8.9; 95% CI: 4.1-24.6).
Awareness about CD as a risk factor of stroke is low. Educational campaigns about risk of stroke in CD patients are encouraged.