Objectives:

to identify the components of social stigma associated with a positive diagnosis of Chagas disease based on individual and family accounts.

Methods:

The study compiles the testimonies of 3 families through in-depth interviews that were recorded, the content of which was structured and then shared among the researchers through a process of triangulation.

Results:

different forms of social stigma, experienced, perceived, anticipated, as well as self-stigma, stigma by association and discriminatory behaviours were identified, leading to social isolation, reinforcing traditional fears associated with the disease, and causing intra-familial tensions. Social stigma and the silence that accompanies it are serious barriers to access to medical consultation and deworming treatment.

Conclusions:

It is important to take into account psycho-socio-cultural aspects in strategies for comprehensive care of Chagas disease, especially in information, education and communication (IEC) programmes and during the medical consultation. Also, to break the stigma and the silence surrounding it, it’s essential to integrate people affected by Chagas and other civil society actors into the conception of these programs.

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