Search

Background There is limited knowledge about the stigma associated with cutaneous leishmaniasis (CL) in Sri Lanka. To ensure that leishmaniasis researchers focus on CL-associated stigma, we provide an evidence-based framework that can be used in future research. Methods We conducted a systematic review on CL-associated stigma using international evidence and carried out a multimethod qualitative study in the Anuradhapura district in Sri Lanka. Based on that, we identified manifestations of stigma, drivers and facilitators that we synthesised to develop a conceptual framework on CL-associated stigma. Results Our framework consists of drivers, facilitators and self-stigma experienced by people with CL. Stigma drivers included fear, misbeliefs and misconceptions about CL; the belief that wounds are disfiguring; the treatment burden and implied blame. Facilitators that reduced stigma included knowledge of the curability of CL and awareness that CL is not contagious. The nature of social interactions in rural communities enhanced stigma formation. We identified various enacted, felt and internalised stigma experiences of people with CL. Conclusions We developed a conceptual framework of the stigma associated with CL that can be used to develop targeted interventions to increase CL awareness, address stigma and improve the quality of life for CL patients. [ABSTRACT FROM AUTHOR]

Leishmaniasis is a tropical infectious disease affecting some of the world's most economically disadvantaged and resource-poor regions. Cutaneous leishmaniasis (CL) is the most common out of the three clinical types of Leishmaniasis. Since 1904 this disease has been endemic in Sri Lanka. CL is considered a disfiguring stigmatising disease with a higher psychosocial burden. However, there needs to be a more in-depth, holistic understanding of the psychosocial burden of this disease, both locally and internationally. An in-depth understanding of the disease burden beyond morbidity and mortality is required to provide people-centred care. We explored the psychosocial burden of CL in rural Sri Lanka using a complex multimethod qualitative approach with community engagement and involvement. Data collection included participant observation, an auto-ethnographic diary study by community researchers with post-diary interviews, and a Participant Experience Reflection Journal (PERJ) study with post-PERJ interviews with community members with CL. The thematic analysis revealed three major burden-related themes on perceptions and reflections on the disease: wound, treatment, and illness-experience related burden. Fear, disgust, body image concerns, and being subjected to negative societal reactions were wound-related. Treatment interfering with day-to-day life, pain, the time-consuming nature of the treatment, problems due to the ineffectiveness of the treatment, and the burden of attending a government hospital clinic were the treatment-related burdens. Anxiety/worry due to wrongly perceived disease severity and negative emotions due to the nature of the disease made the illness experience more burdensome. Addressing the multifaceted psychosocial burden is paramount to ensure healthcare seeking, treatment compliance, and disease control and prevention. We propose a people-centred healthcare model to understand the contextual nature of the disease and improve patient outcomes. Author summary: In order to enhance the provision of healthcare for individuals afflicted with CL in rural Sri Lanka, it is imperative to delve into the consequences of the disease beyond its physical manifestations. Our research methodology encompassed a diverse array of approaches, including participant observation, diaries maintained by community researchers with subsequent interviews, and a Participant Experience Reflection Journal (PERJ) to gain insights into the experiences of community members affected by CL. After conducting thematic analysis of all the data sets, we identified three categories of burden that were interconnected with individuals' perceptions and encounters with the disease: Wound-related burden, Treatment-related burden and Illness-experience-related burden. People with CL were found to experience fear, disgust, and concerns related to body image stemming from the visible wounds and faced adverse societal reactions due to their disease. The treatment regimen for CL posed various challenges for patients, such as disruption of their daily lives and physical discomfort. The experience of illness became more burdensome due to anxiety/worry concerning the illness's severity, coupled with negative emotions linked to the disease. Prioritising the psychosocial burden associated with CL is essential for healthcare seeking, compliance, and disease control. We propose a context-specific, people-centred model to improve patient outcomes. [ABSTRACT FROM AUTHOR]

Background: Cutaneous (CL) and mucocutaneous leishmaniasis (MCL) are parasitic diseases caused by parasites of the genus leishmania leading to stigma caused by disfigurations. This study aimed to systematically review the dimensions, measurement methods, implications, and potential interventions done to reduce the CL- and MCL- associated stigma, synthesising the current evidence according to an accepted stigma framework. Methods: This systematic review followed the PRISMA guidelines and was registered in PROSPERO (ID- CRD42021274925). The eligibility criteria included primary articles discussing stigma associated with CL and MCL published in English, Spanish, or Portuguese up to January 2023. An electronic search was conducted in Medline, Embase, Scopus, PubMed, EBSCO, Web of Science, Global Index Medicus, Trip, and Cochrane Library. The mixed methods appraisal tool (MMAT) was used for quality checking. A narrative synthesis was conducted to summarise the findings. Results: A total of 16 studies were included. The studies report the cognitive, affective, and behavioural reactions associated with public stigma. Cognitive reactions included misbeliefs about the disease transmission and treatment, and death. Affective reactions encompass emotions like disgust and shame, often triggered by the presence of scars. Behavioural reactions included avoidance, discrimination, rejection, mockery, and disruptions of interpersonal relationships. The review also highlights self-stigma manifestations, including enacted, internalised, and felt stigma. Enacted stigma manifested as barriers to forming proper interpersonal relationships, avoidance, isolation, and perceiving CL lesions/scars as marks of shame. Felt stigma led to experiences of marginalisation, rejection, mockery, disruptions of interpersonal relationships, the anticipation of discrimination, fear of social stigmatisation, and facing disgust. Internalised stigma affected self-identity and caused psychological distress. Conclusions: There are various manifestations of stigma associated with CL and MCL. This review highlights the lack of knowledge on the structural stigma associated with CL, the lack of stigma interventions and the need for a unique stigma tool to measure stigma associated with CL and MCL. Author summary: The stigma surrounding cutaneous (CL) and mucocutaneous leishmaniasis (MCL) is multifaceted, encompassing cognitive, affective, and behavioural reactions such as misconceptions, negative emotions like disgust and shame, and discriminatory actions. This stigma is further perpetuated by self-stigmatization, which includes enacted, felt, and internalised stigma. As a consequence, individuals with CL and MCL experience psychological distress, marginalisation, rejection, difficulties in forming interpersonal relationships, and heightened anticipation of encountering discrimination. Our review reveals several gaps in knowledge, including a lack of understanding regarding structural stigma, insufficient appropriate interventions, and the urgent requirement for a specialised tool to measure the stigma related to CL and MCL. Moreover, the absence of a standardised theoretical framework for stigma research on these conditions has led to inconsistent data generation, emphasising the need for a universal stigma framework applicable to various health conditions. Such a framework would foster a deeper understanding, enabling effective strategic planning to address the impacts of stigma on individuals with CL and MCL. [ABSTRACT FROM AUTHOR]

Leishmaniasis is a neglected tropical disease with three main clinical types; cutaneous leishmaniasis (CL), mucocutaneous leishmaniasis (MCL), and visceral leishmaniasis (VL). CL and MCL are considered to be highly stigmatizing due to potentially disfiguring skin pathology. CL and MCL-associated stigma are reported across the world in different contexts assimilating different definitions and interpretations. Stigma affects people with CL, particularly in terms of quality of life, accessibility to treatment, and psycho-social well-being. However, evidence on CL- and MCL-associated stigma is dispersed and yet to be synthesized. This systematic review describes the types, measurements, and implications of the stigma associated with CL and MCL and identifies any preventive strategies/interventions adopted to address the condition. This study was developed according to the Preferred Reporting Items for Systematic Reviews and Meta-Analysis Protocols (PRISMA-P) statement which is registered in the International Platform of Registered Systematic Review and Meta-analysis Protocols PROSPERO (ID- CRD42021274925). We will perform an electronic search in MEDLINE, Embase, Scopus, PubMed, EBSCO, Web of Science, Global Index Medicus, Trip, and Cochrane Library databases, and in Google Scholar, using a customized search string. Any article that discusses any type of CL- and/or MCL-associated stigma in English, Spanish and Portuguese will be included. Articles targeting veterinary studies, sandfly vector studies, laboratory-based research and trials, articles focusing only on visceral leishmaniasis, and articles on diagnostic or treatment methods for CL and MCL will be excluded. Screening for titles and abstracts and full articles and data extraction will be conducted by two investigators. The risk of bias will be assessed through specific tools for different study types. A narrative synthesis of evidence will then follow. This review will identify the knowledge gap in CL-associated stigma and will help plan future interventions. [ABSTRACT FROM AUTHOR]

Leishmaniasis is widely considered a disease that emerged in Sri Lanka in the 1990s. However, a comprehensive case report from 1904 suggests that the presence of Leishmaniasis was well demonstrated in Sri Lanka long before that. The Annual Administration Reports of Ceylon/Sri Lanka from 1895 to 1970 and the Ceylon Blue Book from 1821 to 1937 are official historical documents that provide an annual performance, progress, goals achieved, and finances of Sri Lanka during that time. Both these documents are available in the National Archives. The Ceylon Administrative Report of 1904 reports a full record of observation of Leishman-Donovan bodies in Sri Lanka for the first time. These reports contain a total of 33,438 cases of leishmaniasis in the years 1928 to 1938, 1953, 1956, 1957, 1959, 1960, and 1961 to 1962. Up to 1938, the term "cutaneous leishmaniasis" was used, and after 1938, the term "leishmaniasis" was used in these reports. "Kala-azar" was also mentioned in 11 administrative reports between 1900 and 1947. In 1947, an extensive vector study has been carried out where they reported kala-azar cases. This well-documented government health information clearly shows that the history of leishmaniasis is almost the same as the global history in which the first case with Leishman-Donovan bodies were reported in 1903. [ABSTRACT FROM AUTHOR]

Having an effective surveillance system is imperative to take timely and appropriate actions for disease control and prevention. In Sri Lanka, leishmaniasis was declared as a notifiable disease in 2008. This paper presents a comprehensive compilation of the up-to-date documents on the communicable disease and leishmaniasis surveillance in Sri Lanka in order to describe the importance of the existing leishmaniasis surveillance system and to identify gaps that need to be addressed. The documents perused included circulars, reports, manuals, guidelines, ordinances, presentations, and published articles. The disease trends reported were linked to important landmarks in leishmaniasis surveillance. The findings suggest that there is a well-established surveillance system in Sri Lanka having a massive impact on increased case detection, resulting in im-proved attention on leishmaniasis. However, the system is not without its short comings and there is room for further improvements. [ABSTRACT FROM AUTHOR]

Competing Interests: Competing interests: None declared.