How people affected by Chagas disease have struggled with their negligence: history, associative movement and World Chagas Disease Day

Chagas disease; Negligence; Associative movementEnfermedad de Chagas; Negligencia; Movimiento asociativoMalaltia de Chagas; Negligència; Moviment associatiuIt is well documented that Chagas disease (CD) can pose a public health problem to countries. As one of the World Health Organization Neglected Tropical Diseases undoubtedly calls for comprehensive healthcare, transcending a restricted biomedical approach. After more than a century since their discovery, in 1909, people affected by CD are still frequently marginalised and/or neglected. The aim of this article is to tell the story of their activism, highlighting key historical experiences and successful initiatives, from 1909 to 2019. The first association was created in 1987, in the city of Recife, Brazil. So far, thirty associations have been reported on five continents. They were created as independent non-profit civil society organisations and run democratically by affected people. Among the common associations’ objectives, we notably find: increase the visibility of the affected; make their voice heard; build bridges between patients, health system professionals, public health officials, policy makers and the academic and scientific communities. The International Federation of Associations of People Affected by CD - FINDECHAGAS, created in 2010 with the input of the Americas, Europe and the Western Pacific, counts as one of the main responses to the globalisation of CD. Despite all the obstacles and difficulties encountered, the Federation has thrived, grown, and matured. As a result of this mobilisation along with the support of many national and international partners, in May 2019 the 72nd World Health Assembly decided to establish World Chagas Disease Day, on 14 April. The associative movement has increased the understanding of the challenges related to the disease and breaks the silence around Chagas disease, improving surveillance, and sustaining engagement towards the United Nations 2030 agenda

Community-based actions in consulates: a new paradigm for opportunities for systematic integration in Chagas disease detection

Chagas disease; Health community-based strategy; In-situ screeningMalaltia de Chagas; Estratègia de salut comunitària; Cribratge in situEnfermedad de Chagas; Estrategia de salud comunitaria; Cribrado in situResearch has shown that multidimensional approaches to Chagas disease (CD), integrating its biomedical and psycho-socio-cultural components, are successful in enhancing early access to diagnosis, treatment and sustainable follow-up. For the first time, a consulate was selected for a community-based CD detection campaign. Two different strategies were designed, implemented and compared between 2021 and 2022 at the Consulate General of Bolivia and a reference health facility in Barcelona open to all Bolivians in Catalonia. Strategy 1 consisted in CD awareness-raising activities before referring those interested to the reference facility for infectious disease screening. Strategy 2 offered additional in-situ serological CD screening. Most of the 307 participants were Bolivian women residents in Barcelona. In strategy 1, 73 people (35.8% of those who were offered the test) were screened and 19.2% of them were diagnosed with CD. Additionally, 53,4% completed their vaccination schedules and 28.8% were treated for other parasitic infections (strongyloidiasis, giardiasis, eosinophilia, syphilis). In strategy 2, 103 people were screened in-situ (100% of those who were offered the test) and 13.5% received a CD diagnosis. 21,4% completed their vaccination schedule at the reference health facility and 2,9% were referred for iron deficiency anemia, strongyloidiasis or chronic hepatitis C. The fact that the screening took place in an official workplace of representatives of their own country, together with the presence of community-based participants fueled trust and increased CD understanding. Each of the strategies assessed had different benefits. Opportunities for systematic integration for CD based on community action in consulates may enhance early access to diagnosis, care and disease prevention

Comparative evaluation of community interventions for the immigrant population of Latin American origin at risk for Chagas disease in the city of Barcelona

Introduction: Chagas disease presents bio-psycho-social and cultural determinants for infected patients, their family members, close friends, and society. For this reason, diagnosis and treatment require an active approach and an integral focus, so that we can prevent the disease from creating stigma and exclusion, as is actively promoting access to diagnosis, medical attention and social integration. Methodology: The study was conducted in the Metropolitan Area of Barcelona (Catalonia, Spain) from 2004 to 2017. After an increased detection rates of CHD in our region, the process of construction of community strategies started (2004-2013). Different community interventions with informational, educational, and communication components were designed, developed, implemented, and evaluated. The results of the evaluation helped to determine which intervention should be prioritized: 1) workshop; 2) community event; 3) in situ screening. Afterwards, those strategies were implemented (2014-2017). Results: Each of the three strategies resulted in a different level of coverage, or number of people reached. Thein situscreening interventions reached the highest coverage (956 persons, 58.98%). Clear differences exist (p-value<0.001) between the three strategies regarding the percentage of screenings and diagnoses carried out. The largest number was in thein situscreening intervention, with a total of 830 persons screened despite the greatest number of diagnoses was among the workshop participants (33 persons, 20.75% of those screened). The prevalence of infection found is similar among the three strategies, ranging from 16.63% to 22.32% of the screened patients (p-value= 0.325). Conclusions: The results of the study show that community interventions seem to be necessary to improve access to diagnosis and treatment of CHD in the area of Barcelona. They also show which strategy is the most appropriate based on the detected needs of the community, the proposed objectives of the intervention, and the given socio-temporal context

COVID-19: an opportunity of systematic integration for Chagas disease. Example of a community-based approach within the Bolivian population in Barcelona

Chagas disease; COVID-19; BoliviaEnfermedad de Chagas; COVID-19; BoliviaMalaltia de Chagas; COVID-19; BolíviaBackground As a Neglected Tropical Disease associated with Latin America, Chagas Disease (CD) is little known in non-endemic territories of the Americas, Europe and Western Pacific, making its control challenging, with limited detection rates, healthcare access and consequent epidemiological silence. This is reinforced by its biomedical characteristics—it is usually asymptomatic—and the fact that it mostly affects people with low social and financial resources. Because CD is mainly a chronic infection, which principally causes a cardiomyopathy and can also cause a prothrombotic status, it increases the risk of contracting severe COVID-19. Methods In order to get an accurate picture of CD and COVID-19 overlapping and co-infection, this operational research draws on community-based experience and participative-action-research components. It was conducted during the Bolivian elections in Barcelona on a representative sample of that community. Results The results show that 55% of the people interviewed had already undergone a previous T. cruzi infection screening—among which 81% were diagnosed in Catalonia and 19% in Bolivia. The prevalence of T. cruzi infection was 18.3% (with 3.3% of discordant results), the SARS-CoV-2 22.3% and the coinfection rate, 6%. The benefits of an integrated approach for COVID-19 and CD were shown, since it only took an average of 25% of additional time per patient and undoubtedly empowered the patients about the co-infection, its detection and care. Finally, the rapid diagnostic test used for COVID-19 showed a sensitivity of 89.5%. Conclusions This research addresses CD and its co-infection, through an innovative way, an opportunity of systematic integration, during the COVID-19 pandemic.This intervention was partially funded by the NGO Fundación Mundo Sano-España, financing part of the promotional material of the community intervention. The design of the study and the collection, the data analysis and its interpretation has not been funded

“HEPARJOC-ACTÚA”: Herramienta educativa creada a través de un proceso de investigación-acción participativa con colectivos inmigrantes vulnerables para mejorar la accesibilidad al diagnóstico de la hepatitis b

Background: The World Health Organization estimates that 257 million people suffer from chronic infection by the hepatitis B (HB) virus. It is common for diagnosis to be delayed or never given at all. In Spain, immigrants that come from endemic areas present a prevalence of infection of around 8%. In the year 2015, this study was begun with the aiml of improving accessibility to hepatitis B diagnoses in immigrant communities. Methods: A descriptive qualitative study was carried out, based on participatory action research (IAP). It was divided into two cycles: in the first cycle, after forming a motor group (GIAP), a participatory community assessment (DCP) was performed with the population, through a descriptiveinterpretative qualitative study (ECDI) with 3 focal groups (n=17). A narrative analysis was then performed of thematic content. In the second cycle, two collaborative workshops (coworking) were held to create an educational tool (HEPARJOC) and to co-create an action plan (PDA). As a pilot test, the PDA was put into practice through eight workshops (n=56). A knowledge questionnaire was used to compare the median number of correct responses before and after the workshop, using the t of Student for paired data. Results: A GIAP was formed with 8 members of different sectors and community spaces. In the DCP it was observed that there was a lack of knowledge about different aspects of hepatitis B. Visual, interactive materials were proposed as educational tools, and “HEPARJOC” was created as the final product. In the pilot test of the PDA, the median of correct responses to the knowledge questionnaire about HB was 7.7 (DE=3) before the workshop, and 10.6 (DE=0.2) afterward. The improvement of the median was 2.9 points (IC 95% 2.2- 3.6), which is statistically significant (p<0.001). 30 people sought screening (53.6% of participants), and 23 of those people were screened (41% of participants). Conclusions: “HEPARJOC-ACTUA” is a strategy that could contribute to transforming knowledge and improving accessibility to hepatitis B diagnosis in immigrant communities. Key words: Infectious diseases, hepatitis B, community health, community health agents, health education, participatory action research, immigration.Introducción: La Organización Mundial de la Salud estima que 257 millones de personas padecen infección crónica por el virus de la hepatitis B (HB). Es habitual que el diagnóstico se retrase o que nunca se llegue a realizar. En España, los inmigrantes procedentes de áreas endémicas presentan prevalencias en torno al 8%. En el año 2015, se inició este estudio con el objetivo de mejorar la accesibilidad al diagnóstico de la hepatitis B en colectivos inmigrantes. Métodos: Se realizó un estudio cualitativo descriptivo, basado en la investigación acción participativa (IAP). Se dividió en dos ciclos: en el primer ciclo, después de configurar un grupo motor (GIAP), se realizó un diagnóstico comunitario participativo (DCP) con la población, a través de un estudio cualitativo descriptivo-interpretativo (ECDI) con 3 grupos focales (n=17). Se llevó a cabo un análisis narrativo de contenido temático. En el segundo ciclo, se realizaron 2 talleres de trabajo colaborativo (coworking) para crear una herramienta educativa (HEPAJOC) y coconstruir un plan de acción (PDA). Como prueba piloto se llevó a cabo este PDA a través 8 talleres (n=56). Se utilizó un cuestionario de conocimientos para comparar la media de respuestas correctas pre y post taller utilizando el t de Student para datos apareados. Resultados: Se configuró un GIAP con 8 miembros de diferentes sectores y espacios comunitarios. En el DCP se observó que existía un desconocimiento en diferentes aspectos sobre la hepatitis B. Se propusieron, como herramientas educativas, materiales visuales e interactivos, elaborando como producto final el “HEPARJOC”. En la prueba piloto del PDA, la media de las respuestas correctas al cuestionario de conocimientos sobre la HB fue de 7,7 (DE=3) previamente, y de 10,6 (DE=0,2) posteriormente. La mejoría de la media fue de 2,9 puntos (IC 95% 2,2-3,6), siendo estadísticamente significativa (p<0,001). Solicitaron el cribado 30 personas (53,6%), siendo cribadas 23 (41%). Conclusiones: “HEPARJOC-ACTUA” es una estrategia que puede contribuir a transformar conocimientos y a mejorar la accesibilidad al diagnóstico de la hepatitis B en colectivos inmigrantes