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

## TL;DR

This study explores how people with leprosy in Ethiopia perceive the disease and how misconceptions and stigma affect their health care journeys.

## Contribution

The study provides new insights into the lived experiences and care-seeking behaviors of leprosy-affected individuals in urban rehabilitation centers in Ethiopia.

## Key findings

- Participants often attributed leprosy to supernatural causes, leading to delayed care and advanced disease stages.
- Stigma and misconceptions caused social isolation, discrimination, and inter-generational exclusion.
- Resilience was observed through community-based associations that promoted inclusion and mutual aid.

## Abstract

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.

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.

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.

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.