The psychosocial burden of cutaneous leishmaniasis in rural Sri Lanka: A multi-method qualitative study

Abstract

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.