03113nas a2200253   4500000000100000008004100001260001200042653002200054653003300076653002900109653003200138653002700170653001300197100001200210700001300222700001400235700001500249245015000264856014200414300000900556490000700565520227300572022001402845       2026                            d  c02/202610aLived experiences10aPeople with lived experience10aHealth seeking behaviour10aPersons affected by leprosy10aRehabilitation Centers10aEthiopia1 aChala T1 aGudina E1 aAdorjan K1 aFroeschl G00aExploring the health-seeking journeys of individuals affected by leprosy: Lived experiences in selected urban rehabilitation centers in Ethiopia.  uhttps://deleprastichting-my.sharepoint.com/:b:/g/personal/e_williams_infontd_org/IQB81zGgK7dOQY60jsJCMUImAd4PNMMdbyaRa-7Nmfv1Ef8?e=392ch9  a1-200 v203 a<p><strong>BACKGROUND: </strong></p>

<p>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.</p>

<p><strong>METHODS: </strong></p>

<p>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.</p>

<p><strong>RESULTS: </strong></p>

<p>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.</p>

<p><strong>CONCLUSION: </strong></p>

<p>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.</p>
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