The Role of Community Engagement and Involvement in Enhancing Health Seeking Behavior and Reducing Stigma in High Burden Cutaneous Leishmaniasis Communities of Tigray

Abstract

This dissertation examines the role of community engagement and involvement (CEI) initiatives in addressing the burden of cutaneous leishmaniasis (CL) in endemic communities of Tigray, Ethiopia. CL, a neglected tropical disease-causing chronic ulcers and disfiguring scars, imposes severe psychological and social stigma, leading to health disparities exacerbated by delayed treatment-seeking and cultural misconceptions. Through an ethnographic approach grounded in constructivist and participatory paradigms, the study investigates how bottom-up CEI strategies influence stigma reduction and health-seeking behavior (HSB) among affected individuals. Data were collected over extensive ethnography fieldwork in three rural districts viz. Alaje, Sebha Saesiae, and Degua Tembien, using in-depth interviews, focus group discussions, participant observation, and creative participatory methods such as photovoice and community workshops. Participants included people with CL, caregivers, community leaders, health extension workers (HEWs), and traditional healers. Thematic analysis of these diverse data sources revealed that CEI initiatives, characterized by egalitarian decision-making and community ownership, significantly improved disease awareness and encouraged timely care-seeking. Culturally sensitive communication, leveraging local languages and trusted figures, facilitated dialogue on CL, challenged misconceptions, and reduced stigma associated with visible scars. Findings highlighted how community mobilization enhanced early detection, treatment adherence, and disease surveillance, while fostering mutual trust and empowering communities to engage actively in disease control. Key facilitators included the involvement of HEWs, community advisory groups (CAGs), and local leaders, as well as innovative tools like accessible health platforms that overcame geographic and resource barriers. Conversely, persistent misconceptions about CL causation, stigma associating lesions with impurity or curses, poverty-related limitations, and the disruptive effects of regional conflict emerged as significant barriers undermining intervention continuity and effectiveness. This research underscores the necessity of comprehensive, culturally attuned CEI strategies that integrate local knowledge, promote collective action, and address both medical and social dimensions of CL. By centering community voices and fostering participatory approaches, CEI initiatives were shown to transform perceptions, improve HSB, and reduce the social and xii

psychological burden of CL. Policy implications include institutionalizing CEI within health systems, investing in community capacity building, strengthening psycho-social support services, addressing structural barriers, and prioritizing culturally tailored educational campaigns. These findings contribute to anthropological debates on the intersection of culture, stigma, and health behaviors, offering a replicable model for engaging communities in the control of neglected tropical diseases. Despite limitations related to geographic scope and temporal constraints, this study lays a foundation for future research on sustainable, community-driven health interventions that advance equity and resilience in marginalized populations