Social determinants in the access to health care for Chagas disease: A qualitative research on family life in the "Valle Alto" of Cochabamba, Bolivia

Abstract

Introduction: Chagas disease is caused by the Trypanosoma cruzi infection. It is a neglected tropical disease with considerable impact on the physical, psychological, familiar, and social spheres. The Valle Alto of Cochabamba is a hyperendemic region of Bolivia where efforts to control the transmission of the disease have progressed over the years. However, many challenges remain, above all, timely detection and health-care access.

Methods: Following the Science Shop process, this bottom-up research emerged with the participation of the civil society from Valle Alto and representatives of the Association of Corazones Unidos por el Chagas from Cochabamba. The aim of this study is to explore the social determinants in the living realities of those affected by Chagas disease or the silent infection and how families in the Valle Alto of Cochabamba cope with it. An interdisciplinary research team conducted a case study of the life stories of three families using information from in-depth interviews and performed a descriptive qualitative content analysis and triangulation processes.

Findings: Findings provide insights into social circumstances of the research subjects' lives; particularly, on how exposure to Trypanosoma cruzi infection affects their daily lives in terms of seeking comprehensive health care. Research subjects revealed needs and shared their experiences, thus providing an understanding of the complexity of Chagas disease from the socioeconomic, sociocultural, political, and biomedical perspectives. Results enlighten on three dimensions: structural, psychosocial, and plural health system. The diverse perceptions and attitudes toward Chagas within families, including the denial of its existence, are remarkable as gender and ethnocultural aspects. Findings support recommendations to various stakeholders and translation materials.

Conclusions: Intersectional disease management and community involvement are essential for deciding the most appropriate and effective actions. Education, detection, health care, and social programs engaging family units ought to be the pillars of a promising approach.

Fig 1. Map of the Valle Alto of Cochabamba and the health facilities in the region.

Own creation from cartography of the Ministry of Bolivia 2016. [72]. In addition, it shows the municipality of Cercado where the capital Cochabamba as well as the second- and third-level facilities are located. The Bolivian Chagas Platforms and the Chagas Networks are highlighted. The expanded box shows the districts where families have resided.

Fig 2. Illustrations representing the most affectively relevant people for each family’s story.

Family 1: (on the left) Severina with her husband, Manuel; their daughter, Janet, carrying her own daughter; and Severina’s sister, Silvia, with her husband. Family 2: (in the middle) Victor and Arminda with their children. Family 3: (on the right) Marta being hugged by her sister and her older daughter Jenny. Next to Jenny, Marta’s husband, Miguel; their three other daughters.

Fig 3. Emerging theoretical framework.

Fig 4. Decision-making in the access to health care for Chagas disease.

In green, the most important facilitators that influence the entire process of decision-making in seeking and reaching health care for Chagas disease. In blue and purple, the steps of the common route in the decision-making.