“It left me burnt”: traditional treatment and stigma experiences of cutaneous leishmaniasis in Kalu district, Ethiopia

Abstract Background Cutaneous leishmaniasis (CL) is a major public health issue in Ethiopia, often causing lesions on the cheeks, nose, and lips that take months to heal, and leave permanent scars. Data on the lived experiences of people with CL in Ethiopia is needed to support design of interventions that could respond to their needs. Methods We interviewed 18 people with active or healed CL to understand their experiences of the disease in Kalu district, South Wollo, Ethiopia. Interviews were audio recorded, transcribed and translated for content analysis which focused on experiences of symptoms, treatment and the consequences of living with CL. Results Experiences of CL symptoms and treatments used by people with CL in Kalu were associated with physical discomfort and significant emotional distress. CL began with pain, pruritus, bleeding and ulceration. Most people with CL used painful treatments such as plant-based traditional medicines which irritated the skin or heat to cauterize lesions at home or by traditional healers and expressed dissatisfaction at being left “burnt” but not healed. During treatment, individuals reported abstaining from sexual intercourse as this was believed to worsen CL; people also avoided contact with others who’d recently had sex. Individuals with CL experienced psychological distress, reduced self-worth, and self-exclusion from social participation due to anticipated or experienced stigma, fear of spreading the disease and worsening their own disease. Conclusions Community engagement strategies to promote early case detection and treatment at health facilities should acknowledge the specific fears, informational needs and challenges that shape existing care-related behaviours of people with CL. Providing information about the safety of common traditional treatments and correct information about contagiousness are key areas that public health programmes could address to reduce some of the disease’s impacts. Existing cultural attitudes that emphasize shared vulnerability to CL and underlie non-stigmatizing behaviors could also inform stigma interventions. Author summary Ethiopia is significantly affected by all forms of leishmaniasis. Cutaneous leishmaniasis (CL) is a significant public health problem with an estimated incidence of 50 000 annually. The skin lesions mostly appear on the face. The visible changes caused by the disease have considerable implications on the psychosocial wellbeing of affected people. This study aimed to understand how people affected by CL make sense of signs and symptoms, locally available treatments and the consequences of living with the disease. People affected by CL in Kalu, Ethiopia experienced physical and emotional discomfort in relation to signs and symptoms and traditional treatments applied. Change in appearance, fear, sadness, anxiety, stigma and abstinence from sexual intercourse were reported as consequences of living with CL. To reduce some of the disease’s impacts, our findings imply the need for interventions to target key cultural beliefs that inform needs and behavior of the affected people.

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