Leprosy perceptions and health seeking behaviour in Miandrivazo district, Madagascar

Leprosy remains a severe health and social problem in several low- and middle-income countries, with two main challenges: late diagnosis, which can lead to disabilities, and the burden of stigma and social exclusion. This study explored socio-cultural factors, including community perceptions and representations of leprosy, influencing access to and uptake of biomedical care in an endemic district of Madagascar.

A qualitative study using ethnographic techniques was conducted in the south-west Miandrivazo district of Madagascar. Theoretical sampling included patients and their families, village residents, traditional healers, health workers, and community workers. Data analysis occurred during fieldwork to discuss emerging ideas, and through thematic analysis of the full raw data.

Leprosy was often recognized late, at the stage of visible complications such as mutilations, and perceived as mystical punishment for social transgressions. Self-medication, traditional healers, and biomedical services were avenues patients relied on when seeking care. Most initially consulted a trusted traditional healer, before turning to biomedical or other providers recommended by relatives when their health did not improve. The search of good care often required travelling to distant places at high financial cost. Care-seeking decisions were related to perceptions of the disease's aetiology, symptoms, transmission, (perceived) treatment availability and effectiveness, and experiences or fear of stigma.

This study highlights the importance of socio-cultural factors to be considered in improving access to diagnosis and care for leprosy patients. Lack of continuous, impactful awareness about leprosy as a biomedical condition and (fear of) stigma remain major bottlenecks, within the context of a broader challenged health system.