Formative research on chagas disease – a deeper understanding of the impact of a neglected disease on women in bolivia, brazil, colombia and paraguay.
1
1. CUIDA Chagas, Instituto Nacional de Infectologia (INI), Fundação Oswaldo Cruz (Fiocruz), Rio de Janeiro, Brazil
2
4. CUIDA Chagas, Instituto Nacional de Laboratorios de Salud (INLASA), La Paz, Bolivia
3
2. CUIDA Chagas, Servicio Nacional de Erradicación del Paludismo (SENEPA), Assunción, Paraguay
4
3. CUIDA Chagas, Instituto Nacional de Salud (INS), Bogotá, Colombia
Popul. Med. 2026;8(Supplement Supplement 1):A2277
ABSTRACT
BACKGROUND:
chagas disease (CD) is a neglected tropical disease (NTD) that mainly affects vulnerable populations in endemic countries in latin america.1 Congenital transmission is now the main source of new cases in endemic and non-endemic countries.2 The cuida chagas project aims to contribute to the elimination of congenital CD transmission by enhancing diagnosis, treatment, and comprehensive care in bolivia, brazil, colombia, and paraguay3.
METHODS:
A formative study was conducted in over 30 municipalities in bolivia, brazil, colombia and paraguay, to better understand local contexts, cultures and systems. The study combined quantitative and qualitative approaches, and included desk research, open-ended semi-structured interviews and focus group discussions (FGD). The desk research consisted of collecting and reviewing national and local level secondary data, focusing on demographic and socio-economic data, health systems, and existing CD data, policies and programs. Through interviews and FGDs primary data on CD was collected, focusing on knowledge, diagnosis and care, attitudes, and experiences related to the disease.
RESULTS:
Systemic factors within primary healthcare, including low coverage, high staff turnover, and geographical challenges are key impediments to accessing effective care. Trust in healthcare professionals is low, leading to abandonment of treatment and follow-up care. A significant lack of knowledge on the disease contributes to fear, (internalized) stigma, and discrimination. Limited social mobilization, coupled with a limited understanding of the right to healthcare, contribute to a lack of agency and increased vulnerability among women affected by CD.
CONCLUSIONS:
There are significant challenges faced by women affected by CD, particularly related to access to healthcare, understanding the disease and its implications, and overcoming fear, stigma and discrimination. Findings call for targeted interventions that address socioeconomic disparities, and comprehensive, community-centered approaches that prioritize support systems that address the social, psychological, and professional barriers faced by women affected by CD, promoting greater societal inclusion.
chagas disease (CD) is a neglected tropical disease (NTD) that mainly affects vulnerable populations in endemic countries in latin america.1 Congenital transmission is now the main source of new cases in endemic and non-endemic countries.2 The cuida chagas project aims to contribute to the elimination of congenital CD transmission by enhancing diagnosis, treatment, and comprehensive care in bolivia, brazil, colombia, and paraguay3.
METHODS:
A formative study was conducted in over 30 municipalities in bolivia, brazil, colombia and paraguay, to better understand local contexts, cultures and systems. The study combined quantitative and qualitative approaches, and included desk research, open-ended semi-structured interviews and focus group discussions (FGD). The desk research consisted of collecting and reviewing national and local level secondary data, focusing on demographic and socio-economic data, health systems, and existing CD data, policies and programs. Through interviews and FGDs primary data on CD was collected, focusing on knowledge, diagnosis and care, attitudes, and experiences related to the disease.
RESULTS:
Systemic factors within primary healthcare, including low coverage, high staff turnover, and geographical challenges are key impediments to accessing effective care. Trust in healthcare professionals is low, leading to abandonment of treatment and follow-up care. A significant lack of knowledge on the disease contributes to fear, (internalized) stigma, and discrimination. Limited social mobilization, coupled with a limited understanding of the right to healthcare, contribute to a lack of agency and increased vulnerability among women affected by CD.
CONCLUSIONS:
There are significant challenges faced by women affected by CD, particularly related to access to healthcare, understanding the disease and its implications, and overcoming fear, stigma and discrimination. Findings call for targeted interventions that address socioeconomic disparities, and comprehensive, community-centered approaches that prioritize support systems that address the social, psychological, and professional barriers faced by women affected by CD, promoting greater societal inclusion.
| eISSN: | 2654-1459 |
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