Exploring the experiences of leprosy stigma among patients and healthcare workers in Norte de Santander, Colombia

This study examines leprosy-related stigma among patients and healthcare professionals in Colombia. Leprosy, classified as a WHO-listed NTD, is a chronic nerve disease causing sensory loss, disabilities, and deformities when untreated. This contributes to stigma, reducing quality of life, healthcare access, and income. Despite Colombia achieving WHO’s prevalence goal, some regions still face high detection rates. As a result, leprosy remains a challenge due to an incomplete understanding of the complete disease burden and its intertwined factors. The study consisted of 25 interviews with patients and healthcare workers, and field visits in Colombia’s Norte de Santander Department. Employing a constructivist approach to contextualize leprosy in Colombia through historical and socio-economic factors we integrate participants’ perspectives to enable flexibility beyond psychology’s rigid stigma categories and the disease’s narrow focus. Our research findings confirm regional research on patient stigmatization, including anticipated, internal, and experienced stigma, with a particular focus on the structural level and intersectional factors. This stigma becomes apparent when examining the organization of the healthcare system, the allocation of resources for leprosy prevention, diagnosis, and treatment, and the inadequate attention to patients’ mental health. Furthermore, we describe the commercialization of healthcare in Colombia, which perpetuates this situation by undermining the previously established leprosy community network, reducing the disease to a mere bacteriological perspective, and silencing patient narratives. Our research provides valuable insights for enhancing leprosy case detection, diagnosis, treatment, and social inclusion, ultimately improving patients’ quality of life. Recommendations for Colombia’s public health policies include involving patient expertise in leprosy programs, enhancing national clinical history systems, implementing active case detection, tailoring treatments to local contexts, and encouraging patient participation in comprehensive public initiatives. These measures empower patients, positively impact their mental well-being, and combat the stigma entrenched in Colombian society and institutions.