Title : Exploring the health-seeking journeys of individuals affected by leprosy: Lived experiences in selected urban rehabilitation centers in Ethiopia

Abstract:

Background: Despite widely available and effective treatment, leprosy remains a major public health issue in Ethiopia. The disease is often misconstrued as a hereditary disease in origin, a curse, or a form of divine punishment for immoral behavior. In this study, we aim to explore how individuals affected by leprosy perceive the disease, recognize its early symptoms, and how these perceptions influence care-seeking behaviors.

Methods: An exploratory qualitative study was conducted at selected leprosy treatment and rehabilitation centers located in Addis Ababa, Shashemene, and Jimma. In-depth interviews (key informant interview (KII)) and focus group discussion (FGD) were conducted. Interviews were transcribed verbatim in local languages, translated into English, and reviewed to identify key themes. Data were coded in MAXQDA 24 using pre-identified themes (perceived causes, stigma, social consequences, care-seeking) and open coding to include emerging themes.

Results: A total of 8 FGDs with 53 participants (25 females; mean age 52) and 11 KIIs (5 females) were conducted. Participants demonstrated limited knowledge of leprosy, often attributing it to supernatural causes or divine will, which delayed care-seeking and led to advanced disease stages. Misconceptions and stigma led to social isolation, discrimination, and inter-generational exclusion, with profound economic, social, and psychological impacts. Misdiagnosis or delayed diagnosis, and provider stigma were among the healthcare-related challenges. Despite this, there were individuals that demonstrated resilience by forming supportive social networks, including community-based associations that fostered mutual aid, inclusion, and dignity.

Conclusion: In Ethiopia, leprosy is still a major public health issue. Affected individuals often suffer social exclusions, psychological distress, and diminished quality life. Stigma from health care providers was also reported. Collaborative efforts between the health system, religious leaders, and leprosy affected individuals and their associations are vital for elimination of the disease.

Biography:

Temesgen Kabeta Chala is a lecturer in Health Economics at Jimma University and currently a PhD fellow in Medical Research, International Health program at Ludwig Maximilian University of Munich, Germany. He earned his BSc in Medical Laboratory Technology from Jimma University in 2012, followed by an MPH in Health Economics from the same institution in 2018. He has obtained certificates from short trainings and experience sharing in India, South Korea, South Africa, Norway, Kenya, and Somaliland. Mr. Chala has served as director for laboratory service at Jimma University Medical Center, acting director for supply and property administration, acting chief academic and research officer at Jimma University Institute of Health, and Incident manager for the Jimma Emergency Operation Center established for managing Covid-19. He contributes to national health policy issues, including the preparation of roadmaps for national health care financing, development of national health accounts, and serving on technical advisory teams. His research focuses on academic mobility, capacity building, and the bio-psycho-social impacts of infectious diseases such as leprosy. He has been awarded 4 grants as Principal Investigator and Co-investigator and has published over 8 scientific articles in peer-reviewed international journals, including this PLOS Neglected Tropical Diseases publication (February 2026).