Knowledge and experiences of Chagas disease in Bolivian women living in Spain: a qualitative study

Abstract

BackgroundIn 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.ObjectiveThe 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.DesignQualitative study based on semi-structured interviews, triangular groups, and field notes.ParticipantsFourteen Bolivian women with CD living in Madrid.ResultsThe 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. ConclusionsDisease 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.

Knowledge of Chagas disease in Latin American migrant population living in Japan and factors associated with knowledge level

“…Similar to the result of other studies about CD knowledge of LA migrants, the baseline knowledge of our participants was low [21–24]. Due to high representation of Bolivian population recruited, results of our study were more similar to Blasco-Hernandez et al study, conducted in Madrid in a group of Bolivian women [16]. The participants of our study had knowledge of CD including vector habitat, epidemiology, transmission by vector-borne and the cardiac problems associated with CD.…”

“…People that had been tested before for CD had more information about the disease resulting a change in their care seeking behavior. One study conducted in Spain described that knowledge about the treatment efficacy could influence the decision to get the test of CD [16]. In our study, all participants who had been previously tested for CD were women, except one.…”

“…Knowledge about symptoms and significance of a positive diagnosis were not achieved as baseline knowledge, as in the study of Blasco-Hernandez [16]. Many participants clarified the symptom as suffering for unspecific pain.…”

“…Most of the studies explained the low rate of diagnosis by the implication of socio-cultural factors on the representation of the disease. The most common factors are the stigmatization and the normalization of the disease [11, 12, 16, 17, 20, 21, 26, 27].…”

Screening for Trypanosoma cruzi infection in immigrants and refugees: Systematic review and recommendations from the Spanish Society of Infectious Diseases and Clinical Microbiology

“…Most knew that the disease was transmitted by a vector, could be asymptomatic, and could lead to severe complications such as sudden death and heart failure. While there is some confusion over treatment, the women know that it is available [69].…”