The psychosocial burden of cutaneous leishmaniasis in rural Sri Lanka: A multi-method qualitative study.
Journal article
Nuwangi, Hasara, Dikomitis, Lisa, Weerakoon, Kosala Gayan, Agampodi, S. and 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), p. e0011909. https://doi.org/10.1371/journal.pntd.0011909
| Authors | Nuwangi, Hasara, Dikomitis, Lisa, Weerakoon, Kosala Gayan, Agampodi, S. and Agampodi, Thilini Chanchala |
|---|---|
| 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. [Abstract copyright: Copyright: © 2024 Nuwangi et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.] |
| Keywords | Leishmaniasis, cutaneous - epidemiology; Rural population; Humans; Qualitative research; Patient compliance; Sri Lanka - epidemiology |
| Year | 2024 |
| Journal | PLoS Neglected Tropical Diseases |
| Journal citation | 18 (1), p. e0011909 |
| Publisher | PLoS |
| ISSN | 1935-2735 |
| Digital Object Identifier (DOI) | https://doi.org/10.1371/journal.pntd.0011909 |
| https://doi.org/PNTD-D-23-00940 | |
| Official URL | https://journals.plos.org/plosntds/article?id=10.1371/journal.pntd.0011909 |
| Publication dates | |
| Online | 18 Jan 2024 |
| Publication process dates | |
| Accepted | 08 Jan 2024 |
| Deposited | 01 Feb 2024 |
| Publisher's version | License File Access Level Open |
| Output status | Published |
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https://repository.canterbury.ac.uk/item/96z2y/the-psychosocial-burden-of-cutaneous-leishmaniasis-in-rural-sri-lanka-a-multi-method-qualitative-study
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