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

Nuwangi, Hasara, Dikomitis, Lisa, Weerakoon, Kosala Gayan, Agampodi, Suneth Buddhika, Agampodi, Thilini Chanchala (2024) The psychosocial burden of cutaneous leishmaniasis in rural Sri Lanka: A multi-method qualitative study. PLoS Neglected Tropical Diseases, 18 (1). Article Number e0011909. ISSN 1935-2735. E-ISSN 1935-2727. (doi:10.1371/journal.pntd.0011909) (KAR id:104807)

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.

Item Type: Article
DOI/Identification number: 10.1371/journal.pntd.0011909
Additional information: For the purpose of open access, the author has applied a CC BY public copyright licence to any Author Accepted Manuscript version arising from this submission.
Uncontrolled keywords: leishmaniasis; psychological and psychosocial issues; public and occupational health; face; pain; Sri Lanka; fear; physicians;
Subjects: H Social Sciences
Divisions: Divisions > Division for the Study of Law, Society and Social Justice > School of Social Policy, Sociology and Social Research > Centre for Health Services Studies
Funders: National Institute for Health Research (https://ror.org/0187kwz08)
SWORD Depositor: JISC Publications Router
Depositing User: JISC Publications Router
Date Deposited: 01 Feb 2024 15:24 UTC
Last Modified: 09 Feb 2024 14:45 UTC
Resource URI: https://kar.kent.ac.uk/id/eprint/104807 (The current URI for this page, for reference purposes)

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