"A guardian angel that just appeared": the impact of a community health worker in supporting treatment adherence and follow-up for Chagas Disease patients

Cristina Juan Jimenez^1*Marta Arsuaga Vicente²María Santamaría Seijas³Maria Mar Lago²Marta Díaz Menéndez²Rosa de Miguel Buckley²Fernando de la Calle Prieto²Ana Ayuso Alvarez⁴Marina Gold³

• ¹Anesvad Foundation, Bilbao, Spain
• ²Hospital La Paz-Carlos III, Madrid, Spain
• ³Mundo Sano Foundation, Madrid, Spain
• ⁴Faculty of Political Science and Sociology. Department of Social Anthropology, University Complutense, Madrid, Spain

Background: Latin American migrants living with Chagas disease (CD) face significant healthcare challenges, including limited awareness of the disease among primary care providers and patients, undocumented status, and inflexible working conditions which hinder timely diagnosis and treatment. This study evaluates the impact of community health worker (CHW) interventions on CD patients in a hospital in Madrid and identifies key barriers within the public healthcare system. Methods: This phenomenological study (Oct 2021–Feb 2025) involved thirteen patients supported by a CHW, six unsupported patients, nine health workers and one CHA. Results: Most patients were Bolivian women over 41 working in the service and domestic roles. Health workers and the CHW had over 10 years' experience with CD. Most were diagnosed in Spain, with at least 10 individuals reporting cardiac symptoms. However, none of them had Chagas cardiomyopathy. They usually present with the indeterminate form, which corresponds to the chronic phase of CD. Patients had limited CD knowledge, but they generally adhered well to treatment when indicated. Key findings include misdiagnosis and lack of awareness among primary healthcare workers, leading to referrals to tropical medicine units. Barriers were administrative, geographical, work, financial and cultural. The CHW improved adherence and follow-up through culturally tailored interventions. Recommendations include enhancing primary care knowledge, improving referral pathways, better integrating the CHW, and establishing a patient association in Madrid for education and support. This is a provisional file, not the final typeset article Conclusions: CD remains a major health issue among Latin American migrants or descendants of mothers from endemic areas, who face many obstacles in diagnosis and treatment. CHWs are key to improving treatment adherence, but their integration into the healthcare system is still ongoing. Addressing socioeconomic and cultural barriers requires collaboration, ongoing education, and stronger support networks for primary health workers and patients.