'Self-stigma' of people with cutaneous leishmaniasis the unrecognized one: what do we think; what do we know; what can we prove?

Cutaneous leishmaniasis (CL) refers to a group of parasitic infections caused by the protozoan parasite Leishmania spp. Lack of knowledge and awareness regarding this disease creates a burden for patients with CL to deal with self-stigma. The aim of this ethnographic study is to provide an analysis of self-stigma experienced by patients with CL through an in-depth understanding of the self-stigma experienced by patients with cutaneous leishmaniasis. A qualitative data analysis approach was used for this study. Semi-structured interviews and participant observation were conducted with 33 individuals with CL, and data were analyzed using a thematic analysis method. Interviews revealed that individuals with CL experience severe self-stigma. The participants spoke of their struggle to live with physical appearances that differed from societal norms. Furthermore, they also highlighted that people with CL are often viewed as unclean and contagious, which further adds to their self-stigma. Fear of social exclusion often forced individuals with CL to isolate themselves, leading to a detrimental impact on their mental health and quality of life. This study provides valuable insights into the experiences of patients with CL who are subjected to self-stigma. The findings suggest that the lack of knowledge and the considerable misconceptions surrounding CL create barriers for patients to deal with the condition and the self-stigma attached to it. To address this issue, there is a need for dedicated public health campaigns and health education that increase awareness about CL and provide appropriate support and care for those affected.

Community Engagement in Cutaneous Leishmaniasis Research in Brazil, Ethiopia, and Sri Lanka: A Decolonial Approach for Global Health.

Cutaneous leishmaniasis (CL) is a parasitic skin disease endemic in at least 88 countries where it presents an urgent, albeit often "neglected" public health problem. In this paper, we discuss our model of decolonial community engagement in the ECLIPSE global health research program, which aims to improve physical and mental health outcomes for people with CL. The ECLIPSE program has four interlinked phases and underpinning each of these phases is sustained and robust community engagement and involvement that guides and informs all activities in ECLIPSE. Our decolonial approach implies that the model for community engagement will be different in Brazil, Ethiopia and Sri Lanka. Indeed, we adopt a critical anthropological approach to engaging with community members and it is precisely this approach we evaluate in this paper. The data and material we draw on were collected through qualitative research methods during community engagement activities. We established 13 Community Advisory Groups (CAGs): in Brazil (n = 4), Ethiopia (n = 6), and Sri Lanka (n = 3). We identified four overarching themes during a thematic analysis of the data set: (1) Establishing community advisory groups, (2) CAG membership and community representation, (3) Culturally appropriate and context-bespoke engagement, and (4) Relationships between researchers and community members. During our first period of ECLIPSE community engagement, we have debunked myths (for instance about communities being "disempowered"), critiqued our own practices (changing approaches in bringing together CAG members) and celebrated successes (notably fruitful online engagement during a challenging COVID-19 pandemic context). Our evaluation revealed a gap between the exemplary community engagement frameworks available in the literature and the messy, everyday reality of working in communities. In the ECLIPSE program, we have translated ideal(istic) principles espoused by such community engagement guidance into the practical realities of "doing engagement" in low-resourced communities. Our community engagement was underpinned by such ideal principles, but adapted to local sociocultural contexts, working within certain funding and regulatory constraints imposed on researchers. We conclude with a set of lessons learned and recommendations for the conduct of decolonial community engagement in global health research.