“Kokobe” and “gwasi”: Perceptions of leprosy in French Guiana
Background Leprosy remains endemic in French Guiana (FG), one of the last European territories with autochthonous cases. Despite its historical and sociocultural particularities, no study has specifically explored local perceptions of leprosy in this multicultural context. This study aimed to describe how patients with leprosy from different cultural backgrounds in FG hold alternative explanatory models and practices, and to explore cultural representations of leprosy among members of Western French Guiana (WFG) Maroon communities. Methodology/Principal findings A qualitative study was conducted between April and September 2025. Semi-structured interviews were held with 20 patients across FG health centres and 37 community members in WFG villages linked to the former Acarouany leprosarium. Recruitment continued until thematic saturation was reached, and interviews were subsequently analysed using thematic analysis Patients and WFG members from Maroon communities used culturally specific terms to refer to the disease, kokobe and gwasi , referring respectively to deformities and skin patches, associated with the disease. Spiritual explanations (taboo transgression, curse) predominated among Maroon and Haitian participants, whereas bacterial causation was rarely mentioned. Confusion with diabetes was common. Local plant-based remedies were widely used but did not compromise adherence to multidrug therapy, which was perceived as effective. While most patients in FG reported good social integration, some of them mentioned discriminatory attitudesamong close relatives and in broader social contexts and public services. However, significant family and/or community support was reported in most of the interviews. Conclusions/Significance Leprosy in FG remains embedded in complex cultural representations that influence disclosure, diagnosis, and care pathways. Strengthening culturally sensitive communication, increasing awareness among health professionals, clarifying person-to-person transmission, and taking local practices into account could help improving adherence and understanding between health workers and patients.
Authors
- Marc-Alexandre Tareau (ORCID: https://orcid.org/0000-0002-1357-4287)
- Romain Blaizot (ORCID: https://orcid.org/0000-0003-3695-6824)
- Aurore Dupont (ORCID: https://orcid.org/0000-0002-0245-655X)
- Wim Saakie
Institutions
- University of French Guiana (GF)
Publication Details
- Journal
- PLoS neglected tropical diseases
- Published
- 2026-11-11
- DOI
- https://doi.org/10.1371/journal.pntd.0014840
- Primary Topic
- Leprosy Research and Treatment
- Type
- article
- Field-Weighted Citation Impact
- 0.00