Health experiences of pregnant and women with chagas disease in the Atacama, Tarapaca, and Metropolitan regions of Chile. Mistreatment as an indicator of healthcare barriers

by Andrea Avaria, Camila Plaza

Congenital transmission is one of the most significant forms of Trypanosoma cruzi transmission worldwide. Migrant women, in particular, often face barriers to accessing the healthcare system; one such barrier being that their health rights are not recognised. The situation in Chile is a reality that can be extrapolated to historical territories affected by Chagas disease and that is characterized by migrant populations. This article explores the healthcare experiences of pregnant and women living with Chagas disease, both nationals and migrants, and residents of three regions of Chile.

The qualitative research study analyzed the experiences and meanings around the problem of Chagas based on 54 in-depth interviews with women in pregnancy and women who were diagnosed with the disease. The information was processed following the Grounded Theory tenets through the constant encoding feedback procedure, which allowed us to describe and comprehensively understand the phenomenon.

The findings indicate that managing information is a sensitive aspect in evaluating healthcare experiences, with the potential to either positively or negatively impact the acceptance of diagnosis and treatment planning. The negative impact is determined by the communicative dimension and how healthcare teams deliver information. Poor attention, poor treatment, and lack of empathy lead patients to reject or distance themseves from the healthcare system. The positive aspects are related to a sensitive, personalized, and highly empathetic treatment. In historically endemic areas, these factors are essential for ensuring continuity in healthcare processes. There is an evident need to understand and value the settings, means, and contents within Chagas´s healthcare contexts.

Communication is crucial during diagnostic processes as it determines the assessment, credibility, and trust in the health system, thereby influencing the continuity of treatment, especially in highly sensitive moments such as pregnancy. Therefore, it is necessary to articulate strategies considering information magement with greater empathy and emotional support.