Community perceptions and practices on hepatic veno-occlusive disease in Tigray, Ethiopia: An explorative study challenging the attribution to Ageratum conyzoides.

BACKGROUND: Hepatic veno-occlusive disease (HVOD) is a rare but severe condition characterized by the blockage of microscopic veins in the liver due to endothelial damage, leading to sub-endothelial thickening, edema, and fibrosis. Globally the cause of HVOD is primarily associated with pyrrolizidine alkaloid (PA) ingestion, radiation therapy, and post-transplant reactions. Similarly, in the Tigray region of Ethiopia, the disease's outbreak has been linked with contaminated harvests containing PA-producing seed called "Ageratum conyzoides". However, the perception and current experience of community members and healthcare providers on the cause and prevention strategies of the disease are not explored. OBJECTIVE: To explore the perceptions and practices of community members and healthcare providers on HVOD in Tigray, Ethiopia. METHODS: This qualitative study was conducted in the Tigray Region of Northern Ethiopia from January to February 2025. It employed a community and facility-based approach using in-depth interviews (IDIs), focus group discussions (FGDs), and key informant interviews (KIIs) to explore perceptions and current experiences on the causes and practice of preventive measures of HVOD. We selected five districts with high HVOD burdens. We included religious leaders and HVOD victims from the community members and healthcare leaders and professionals from the health facilities. A total of three FGDs, sixteen IDIs, and seven KIIs were conducted and data was analyzed thematically using Atlas.ti software. RESULTS: The community's understanding of HVOD is complex, recognizing it as a severe chronic disease but with uncertainty about its transmission and prevention. Our study identified three key themes: variability in knowledge among community members and healthcare providers regarding HVOD's causes, prevention, and treatment, alongside a notable lack of coordinated leadership and support from healthcare providers, political leaders, and other stakeholders. Participants expressed frustration over the absence of structured interventions for awareness, prevention, and treatment. Additional barriers included skepticism about Ageratum conyzoides as the cause, social stigma, traditional beliefs, political instability, healthcare system weaknesses, and economic challenges. Acceptance of scientific interventions was uneven, shaped by varying levels of trust and resistance. Participants emphasized the need for targeted healthcare provider training, stronger community engagement in awareness and planning, and formal integration of HVOD into national health programs to improve resource allocation and coordination. These findings highlight the complex challenges and inform strategies for more effective HVOD control. CONCLUSIONS: Hepatic veno-occlusive disease (HVOD) is a significant public health issue in Ethiopia, which is exacerbated by misconceptions and systemic healthcare challenges. To address this, strengthening healthcare systems and community engagement through awareness campaigns are crucial. Integrating HVOD into the national public health emergency management programs with multi-sectoral collaboration could be essential for its effective management.