Listening before treating: a community-driven model to bridge gaps in Chagas disease and prevent advanced cardiovascular complications
L F Aguilera Mora, E A Berrios Barcenas, J E Gonzalez Lopez, A Ordorica Orozco, O S Lomeli Sanchez, E Gutierrez Perucho, R Rascon Sabido, A L Posada Jimenez, M C Escalante Seyffert, R Soria Garcia, T Mejia Hernandez, Y G Anguiano Ramos, A Gonzalez MartinezAbstract
Background
Chagas disease remains a neglected cause of cardiomyopathy and heart failure, driven by systemic gaps in awareness, diagnosis and care coordination. Limited community engagement, fragmented health services and weak integration between frontline care, institutions and decision-makers contribute to delayed detection and advanced cardiovascular complications. Addressing these challenges requires health system strategies that integrate community perspectives into policy and service design.
Purpose
To describe a community-based active listening and co-creation model aimed at bridging communities, health systems and decision-makers in Chagas disease, and to explore its potential to strengthen cardiovascular care pathways.
Methods
A qualitative participatory active listening approach was implemented through structured workshops. All discussions were audio-recorded and transcribed. Multistakeholder working groups included patients, community members, frontline healthcare providers and health system decision-makers. Data were analysed using thematic qualitative analysis, focusing on health system coordination, communication pathways, access to care and governance processes relevant to cardiovascular disease.
Results
Four interrelated thematic domains emerged. At the community–health system interface, participants demonstrated high recognition of the vector but limited understanding of disease progression and cardiovascular consequences, contributing to delayed care-seeking. Fragmented organisation of services resulted in unclear pathways between primary care, diagnostics and referral centres, with loss of patients across the cardiovascular care continuum. Frontline providers reported insufficient training, lack of standardised protocols and limited feedback mechanisms, leading to variability in clinical and administrative decision-making. At the governance level, active listening and co-creation facilitated dialogue between communities and decision-makers, revealing misalignment between policy priorities and frontline realities while generating context-adapted strategies to improve coordination and access.
Conclusion
Active listening and co-creation are feasible and scalable health system strategies to bridge gaps between communities, healthcare services and decision-makers in Chagas disease. By aligning community experience with institutional processes, this model may strengthen cardiovascular care pathways and inform more responsive policies to prevent advanced heart failure in neglected cardiomyopathies.Figure 1.Institutional barriersFor image description, please refer to the figure legend and surrounding text.Table 1.Key qualitative findingsFor image description, please refer to the figure legend and surrounding text.