Leprosy perceptions and health seeking behavior in Miandrivazo district, Madagascar

Abstract Background 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. Methodology A qualitative study using ethnographic techniques was conducted in the Miandrivazo district, southwestern 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. Principal Findings 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. Conclusions/Significance 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. Author summary Leprosy, an infectious disease caused by Mycobacterium leprae, usually presents initially with benign, insensitive patches of skin with pigment loss, despite the risk of leading to irreparable nerve damage and disability if left untreated. Since the discovery of effective antibacterial drugs for leprosy, the disease has been brought under control in large parts of the world but remains a significant health problem in some countries like Madagascar. In order to interrupt transmission and prevent new patients from developing visible deformities, potential bottlenecks to early detection and treatment must be identified. Geographical and financial access to care have previously been identified as main concerns. However, this study in Madagascar revealed that perceptions of the causes and signs of the disease were main drivers of patients’ health seeking behavior. The biomedical definition of leprosy was different from its community representation as a punishment for social and moral transgressions. The disease therefore caused stigma, and the first choice of care would often be a traditional healer. The current sensitization strategy could be improved by increasing its frequency and considering the cultural understanding and stigma of leprosy in Madagascar, in order to increase early diagnosis and adherence to treatment. Competing Interest Statement The authors have declared no competing interest. Clinical Trial This study was a socio-anthropological component of the PEOPLE project (Post-exposure prophylaxis in leprosy) and was registered with ClinicalTrials.gov: NCT03662022. Funding Statement Yes Author Declarations I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained. Not Applicable The details of the IRB/oversight body that provided approval or exemption for the research described are given below: The research was approved by the Biomedical Research Ethics Committee of the Madagascar Ministry of Public Health (reference number: 032/MSANP/SG/-AGME /CNPV/CERBM). Address of the institution: Ministère de la Santé Publique – Ambohidahy BP.88 – ANTANANARIVO 101 The research was also approved by the Institutional Review Board of the Antwerp Institute of Tropical Medicine (reference number: 1255/18). Address of the institution: Nationalestraat 155, 2000 Antwerp, Belgium I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals. Not Applicable I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance). Not Applicable I have followed all appropriate research reporting guidelines, such as any relevant EQUATOR Network research reporting checklist(s) and other pertinent material, if applicable. Not Applicable Footnotes ↵¶ KPG and MR share last authorship on this work Data Availability The data supporting the findings will not be made openly accessible due to confidentiality concerns as the dataset contains sensitive data and cannot be fully anonymized given the nature of the research. Data can, however, be made available after approval of a motivated and written request to the Institute of Tropical Medicine at ITMresearchdataaccess{at}itg.be.