Perception of and reaction to the “Chagas” disease in a non-endemic Country: A Multidisciplinary Research, Bologna, Italy (IT)
Written by Alessandra Cannizzo
Text reference: “La malattia di Chagas in un paese non endemico: il contesto bolognese. Analisi multidisciplinare della malattia e del fenomeno migratorio” (Chagas Disease in a Non-endemic Country: A Multidisciplinary Research, Bologna, Italy.) by Di Girolamo, C., Marta, B.L., Ciannameo, A., Cacciatore, F., Balestra, G.L., Bodini, C., Taroni, F., Annali di Igiene, 2010; 22:1. Available in English at Journal of Immigrant and Minority Health, 2016. 18(3), pp. 616-623.
After the substantial change in the epidemiological landscape of Chagas disease, Italy appears to become the second non-endemic area in Europe in terms of Latin American migrants and expected infection rate. The Bologna University Teaching Hospital has undertaken a cross-sectional study in association with an ethnographic research. Comparing the results of the study with previous studies in non-endemic contexts, the researchers were able to identify subjective perceptions of Chagas disease and other significant ill-health experiences in a sample of Latin American migrants in the Emilia Romagna area. Perceptions are important because they impact on possibilities of prevention and cure.
Through the information collected in the introductory phase, the research aimed to frame the Chagas disease by analysing its origin and dissemination in non-endemic countries. The parts of the population most affected by this disorder are commonly found in rural areas and some authors emphasise the social distance, describing it as “forgotten populations”. Chagas disease is strongly related to poverty and rurality, and the consequences of this stigmatisation is the discrimination in the labour market and moreover the spreading of the disease in non-endemic countries linked to the migration of disadvantaged people looking for better life conditions. Studies conducted by distinguished organisations show that the Chagas disease affects seven to eight million people worldwide. The authors state that, considering the global processes of migration of disadvantaged people in the last decades, Chagas has affected non-endemic areas such as North America, Europe and the Western Pacific Region. The research paper highlights the lack of information on the subjective perception of the disease, which is due to the uncertainty of migrants related to their challenging life conditions, in fact, they often experience more urgent health needs and encounter multiple barriers in accessing healthcare services. The following study conducted by a pool of medical experts, for the first time in the Emilia-Romagna region, aims to provide preliminary data on the Chagas disease and goes into the subjective perceptions of the malady in the context of the new migration flows. In order to analyse the presence, and the subjective perception related to such disease, the project uses a social epidemiology approach, which allows the elaboration of prevention strategies and cure of the affected individuals.
In the second section of the paper, the authors explain the methodology they have applied in the study. The cross-sectional study run within the Bologna University Teaching Hospital has included a diversified group of physicians, microbiologists, public health doctors and medical anthropologists. In a broader sense, the project aimed at contributing and promoting the right to health amongst the Latin American population, which – due to the migration experience – is more exposed to socio-economic factors negatively affecting their health condition. As a result, an illustrated multilingual leaflet was co-created with a group of Latin American migrants in order to disseminate the information about the disease and the diagnosis and management service offered by the hospital.
Participant selection and data collection
The authors guide the reader through the full process of data collection carried out through questionnaires and interviews with a group of at-risk people, identified as Latin American migrants present in the region. All the information collected was reported in a research diary and the results presented for the period (November 2010 – May 2013) were taken through Chagas-disease testing which was free of charge for at-risk people who attended the service for any clinical reasons and for those who asked for it after being reached by the information campaign. From an anthropological perspective the study also dug into the specific historical and socio-cultural features of the migration flows from Latin America in the Bologna area and put these in connection with the subjective perception of the disease.
The ethno-anthropological research started first with a mapping of the various gathering forms and places frequented by the Latin American population. The authors specify that one of the main advantages in this phase, but also in the entire research, was the multidisciplinary approach applied. A descriptive analysis of the quantitative variables and the qualitative data investigation were conducted throughout the study. The analysis was refined at the end of the fieldwork when meaningful contents were examined and interpreted.
Research results in the Bologna area
The results obtained pertain to the quantitative analysis, which shed light on the social background of the disease. 151 individuals were screened of which 94.7% adult Latin American migrants arriving from endemic areas, 3.97% adopted children and 1.32% Italian travellers. The research results show that migrants originating from Argentina, Bolivia and Brazil were more aware of the disease; while Peruvians and Ecuadorians, who represent 40% of the sample along with people coming from Central America, Colombia and Venezuela, had no or limited knowledge about the disease. The ethnographic research conducted revealed how a better social position facilitated the integration with the Italian healthcare system and also proved that tough work and challenging life conditions highly affect the perception and the knowledge of the disease. The ethnographic research also revealed a rather complex situation in terms of the influence of migration patterns on ill-health experiences. For example, a small group of migrants (mainly women) from Brazil, Argentina, Colombia and Chile who had moved to Italy for political reasons and had married Italians showed better health conditions linked to better integration in the social context, higher social status, and easier access to healthcare and other resources. The various stakeholders interviewed pointed out how participation in the research project could be beneficial in developing new tools for social inclusion through the creation of a network to discuss important issues for migrants, such as jobs, bureaucracy and legality. Indeed, the mapping activity has had the awaited effect of promoting the creation of a dynamic local network of actors directly or indirectly linked to Latin America.
Comparison with previous research and insights
Through a series of comparative research, the authors provide a more complete analysis, from both the medical and social point of view. In the subgroup of adult Latin American migrants, the overall prevalence of Chagas disease was 8.39%. The percentage is similar to that reported in Switzerland and elsewhere in Italy, but lower than that found in Barcelona. Another comparable data with previous reports is that Bolivians appear to be the most affected group, especially because of the challenging life and work conditions they experience. The authors state that it is widely recognised that older Latin American migrants are exposed to a higher risk of infection than younger people, mainly due to the progressive implementation of control programmes in endemic countries. In non-endemic countries such as Italy, the study confirms in the findings of the previous research risk factors and behaviours associated with the affliction. Chagas disease is confirmed as an issue in the local context where the research was carried out. One of the outcomes was the recommendation to work on rights broadly speaking, and in particular on the right to health, paying attention to all socio-economic and political factors not strictly related to the health sector.
The data collected from the presented study allowed the authors to evaluate the social aspects of Chagas disease in Italy, as well as to identify potential ways forward to improve the approach to the disease. The paper shows that the awareness around the disease was rather mixed among Latin American migrants who participated in the study. Most of the Chagas-affected individuals knew about the affliction, through family or direct experience and through media campaigns carried out in their country of origin, but the entire sample agreed that an information campaign on the disease and the related risks would be very relevant in order to enhance the awareness among the at-risk population. The study had the additional effect of creating such an awareness. It also contributed to better assessing the risk factors attached to various socio-cultural features. It is recognised that older Latin American migrants are exposed to a higher risk of infection than younger people, mainly due to the progressive implementation of control programmes in endemic countries. Similarly, having a relative diagnosed with Chagas disease was more common among those who tested positive possibly due to the sharing of the risky environment or the vertical transmission. Moreover, a history of dwelling in rural areas – generally the poorest and the most isolated areas in the Latin American continent – was another shared risk factor among infected individuals, as argued by other authors in some comparative research. The research is particularly relevant because of its setting in Emilia Romagna, a region not yet studied and strongly affected by foreign presence, but also because it was carried out with a multidisciplinary approach. The conclusions and recommendations are directed towards a practical improvement of the healthcare system in order to better manage the Chagas disease. Furthermore, the interdisciplinary nature of the research led to further reflection on the social and cultural implications related to Chagas disease, underlining the importance of integration between medical and anthropological approaches for research purposes.
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