Experiences of a community-based lymphedema management program for lymphatic filariasis in Odisha State, India: An analysis of focus group discussions with patients, families, community members and program volunteers

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dc.contributor.authorCassidy, Talien_ZA
dc.contributor.authorWorrell, Caitlin Men_ZA
dc.contributor.authorLittle, Kristenen_ZA
dc.contributor.authorPrakash, Aishyaen_ZA
dc.contributor.authorPatra, Inakhien_ZA
dc.contributor.authorRout, Jonathanen_ZA
dc.contributor.authorFox, LeAnne Men_ZA
dc.date.accessioned2016-03-08T10:56:17Z
dc.date.available2016-03-08T10:56:17Z
dc.date.issued2016en_ZA
dc.description.abstractAuthor Summary Around the world 68 million people are infected with lymphatic filariasis (LF), a mosquito-borne disease caused by filarial worms. The parasite can damage patients' lymphatic systems causing pain, infections and swollen limbs, known as lymphedema or, in more advanced stages, elephantiasis. Lymphedema management programs can help patients to deal with the physical and emotional effects of lymphedema and elephantiasis. We held a total of 24 focus groups to discuss the experiences of people with lymphedema in Odisha State, India who participate in such a program. Discussions were held with patients, family members of patients, community members and program volunteers. Significant social, physical and economic difficulties were described by patients and family members, including marriage-related issues, social stigma, and lost workdays. However, the positive impacts of the lymphedema management program were also emphasized, and many family and community members indicated that community members were accepting of patients and had some improved understanding of the cause of the disease. People were able to hold both a 'scientific' and a 'traditional' understanding of LF at the same time. The financial hardships that people described highlight the need for improved economic opportunities for lymphedema-affected patients. Support programs based in the community also have clear social and emotional benefits. There is an urgent need to scale up LF management programs to reduce the suffering of people affected by LF.en_ZA
dc.identifier.apacitationCassidy, T., Worrell, C. M., Little, K., Prakash, A., Patra, I., Rout, J., & Fox, L. M. (2016). Experiences of a community-based lymphedema management program for lymphatic filariasis in Odisha State, India: An analysis of focus group discussions with patients, families, community members and program volunteers. <i>PLOS Neglected Tropical Diseases</i>, http://hdl.handle.net/11427/17577en_ZA
dc.identifier.chicagocitationCassidy, Tali, Caitlin M Worrell, Kristen Little, Aishya Prakash, Inakhi Patra, Jonathan Rout, and LeAnne M Fox "Experiences of a community-based lymphedema management program for lymphatic filariasis in Odisha State, India: An analysis of focus group discussions with patients, families, community members and program volunteers." <i>PLOS Neglected Tropical Diseases</i> (2016) http://hdl.handle.net/11427/17577en_ZA
dc.identifier.citationCassidy, T., Worrell, C. M., Little, K., Prakash, A., Patra, I., Rout, J., & Fox, L. M. (2016). Experiences of a community-based lymphedema management program for lymphatic filariasis in Odisha State, India: An analysis of focus group discussions with patients, families, community members and program volunteers. PLOS Negl Trop Dis, 10(2), e0004424. doi:10.1371/journal.pntd.0004424en_ZA
dc.identifier.ris TY - Journal Article AU - Cassidy, Tali AU - Worrell, Caitlin M AU - Little, Kristen AU - Prakash, Aishya AU - Patra, Inakhi AU - Rout, Jonathan AU - Fox, LeAnne M AB - Author Summary Around the world 68 million people are infected with lymphatic filariasis (LF), a mosquito-borne disease caused by filarial worms. The parasite can damage patients' lymphatic systems causing pain, infections and swollen limbs, known as lymphedema or, in more advanced stages, elephantiasis. Lymphedema management programs can help patients to deal with the physical and emotional effects of lymphedema and elephantiasis. We held a total of 24 focus groups to discuss the experiences of people with lymphedema in Odisha State, India who participate in such a program. Discussions were held with patients, family members of patients, community members and program volunteers. Significant social, physical and economic difficulties were described by patients and family members, including marriage-related issues, social stigma, and lost workdays. However, the positive impacts of the lymphedema management program were also emphasized, and many family and community members indicated that community members were accepting of patients and had some improved understanding of the cause of the disease. People were able to hold both a 'scientific' and a 'traditional' understanding of LF at the same time. The financial hardships that people described highlight the need for improved economic opportunities for lymphedema-affected patients. Support programs based in the community also have clear social and emotional benefits. There is an urgent need to scale up LF management programs to reduce the suffering of people affected by LF. DA - 2016 DB - OpenUCT DO - 10.1371/journal.pntd.0004424 DP - University of Cape Town J1 - PLOS Neglected Tropical Diseases LK - https://open.uct.ac.za PB - University of Cape Town PY - 2016 T1 - Experiences of a community-based lymphedema management program for lymphatic filariasis in Odisha State, India: An analysis of focus group discussions with patients, families, community members and program volunteers TI - Experiences of a community-based lymphedema management program for lymphatic filariasis in Odisha State, India: An analysis of focus group discussions with patients, families, community members and program volunteers UR - http://hdl.handle.net/11427/17577 ER - en_ZA
dc.identifier.urihttp://dx.doi.org/10.1371/journal.pntd.0004424en_ZA
dc.identifier.urihttp://hdl.handle.net/11427/17577
dc.identifier.vancouvercitationCassidy T, Worrell CM, Little K, Prakash A, Patra I, Rout J, et al. Experiences of a community-based lymphedema management program for lymphatic filariasis in Odisha State, India: An analysis of focus group discussions with patients, families, community members and program volunteers. PLOS Neglected Tropical Diseases. 2016; http://hdl.handle.net/11427/17577.en_ZA
dc.language.isoengen_ZA
dc.publisherPublic Library of Scienceen_ZA
dc.publisher.departmentDepartment of Public Health and Family Medicineen_ZA
dc.publisher.facultyFaculty of Health Sciencesen_ZA
dc.publisher.institutionUniversity of Cape Town
dc.rightsThis 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.en_ZA
dc.rights.urihttp://creativecommons.org/licenses/by/4.0en_ZA
dc.sourcePLOS Neglected Tropical Diseasesen_ZA
dc.source.urihttp://journals.plos.org/plosntdsen_ZA
dc.subject.otherLymphedemaen_ZA
dc.subject.otherLymphatic filariasisen_ZA
dc.subject.otherFeversen_ZA
dc.subject.otherHydroceleen_ZA
dc.subject.otherSexual and gender issuesen_ZA
dc.subject.otherEconomic impact analysisen_ZA
dc.subject.otherIndiaen_ZA
dc.subject.otherOriyasen_ZA
dc.titleExperiences of a community-based lymphedema management program for lymphatic filariasis in Odisha State, India: An analysis of focus group discussions with patients, families, community members and program volunteersen_ZA
dc.typeJournal Articleen_ZA
uct.type.filetypeText
uct.type.filetypeImage
uct.type.publicationResearchen_ZA
uct.type.resourceArticleen_ZA
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