Perception and Active Participation of Families Affected by Chagas Disease Determine Success of Health Care

“Only those who have Chagas perceive the reality of the disease. They are the ones who really understand it, know it and live with it,” says Severina, one of the people affected by Chagas disease who participated in a study conducted as part of the InSPIRES project and coordinated by the CEADES Foundation in Bolivia. Any scientific response or comprehensive health care approach to the protozoan infection caused by Trypanosoma cruzi must seek to actively involve those who know and understand this disease because they live with it every day.

Only those who have Chagas perceive the reality of the disease. They are the ones who really understand it, know it and live with it

Severina is one of the people affected by Chagas disease who participated in a study.

The choice of location was key. The study, published on 12 August in PLOS One, focused not merely on an endemic area, where the risk of T. cruzi infection is high, but on a hyperendemic region, where the levels of risk, incidence and prevalence of the disease are high and persistent. In the Valle Alto of Cochabamba, Bolivia, Chagas disease has ravaged families for years. While transmission control has come a long way, major challenges remain, especially in terms of early detection and care.

Chagas disease is therefore an intimate family matter and the decision to diagnose and treat the infection is ultimately a personal one

Research, detection, care and control efforts are more likely to fail if we do not know how an affected person and their milieu will react to the disease on an intimate level and deal with its progression. Nowadays, more information is available on the scientific response to Chagas disease—in both its asymptomatic infection and disease stages—than on the response of the families, who, after all, are the main affected parties. To address this problem, the CEADES Foundation decided to create a space for dialogue in Bolivia between members of civil society in the Valle Alto and representatives of the Association of United Hearts for Chagas Disease of Cochabamba (ASCUCHAC). The foundation applied a “science shop” process, wherein participatory research is used to generate knowledge and apply responses to specific needs, which are formulated and developed by the community itself. 

The needs expressed by the community included the need for a better understanding of how affected individuals and families live and cope with Chagas infection and disease. An interdisciplinary team of researchers from the CEADES Foundation and ISGlobal then conducted a qualitative study to explore the social determinants in the life histories of three affected families.

The study also underscores the need for intersectional disease management that involves various stakeholders, including the community

The study participants provided information on socioeconomic, sociocultural, political and biomedical aspects that greatly enrich the approach to Chagas disease. The study found a diverse range of perceptions and attitudes within the families, including denial of the existence of the disease, cases in which the psychological impact of receiving a positive diagnosis leads to health problems, and the belief that the antiparasitic drugs are too strong and harmful to the immune system. In any of these situations, Chagas disease is made invisible, evaded or simply denied. In the words of some study participants, when it comes to Chagas disease, “there is no need to rummage around”.

When symptoms associated with Chagas disease appear, the expectation of disability or death leads to fear, stigma, and a major psychological and emotional impact on families. Chagas disease is therefore an intimate family matter and the decision to diagnose and treat the infection is ultimately a personal one. The support of one’s family and social circle during the process of seeking diagnosis and treatment for Chagas disease is a key factor in overcoming obstacles and getting people the care they need.

The study also shows how some people deal with Chagas disease through self-care practices (consumption of medicinal plants or self-treatment with drugs bought directly from pharmacies), folk practices (diagnosis and treatment according to the Quechua-Aymara worldview of traditional therapists or healers) or by turning to the public or private biomedical health care system. The choice of system depends largely on the accessibility and perceived quality of the health system, but also on gender and other ethno-cultural determinants. Together, these factors have a decisive influence on attitudes toward seeking medical care. 

The study also underscores the need for intersectional disease management that involves various stakeholders, including the community, especially when it comes to choosing the most appropriate and effective care actions. The inclusion of such actions in participatory socio-educational programmes is therefore of the utmost importance. 

Researchers of the CEADES Foundation and ISGlobal with Severina, one of the participants.

This research was made possible by European Union funding for the InSPIRES project and the collaboration of the ASCUCHAC, research staff from the ISGlobal Chagas Initiative, the InSPIRES consortium and the CEADES Foundation.

For more information, you can read the study.