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
Identifieur interne : 000966 ( Pmc/Checkpoint ); précédent : 000965; suivant : 000967Experiences 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
Auteurs : Tali Cassidy [Afrique du Sud] ; Caitlin M. Worrell [États-Unis] ; Kristen Little [États-Unis] ; Aishya Prakash [Inde] ; Inakhi Patra [Inde] ; Jonathan Rout [Inde] ; Leanne M. Fox [États-Unis]Source :
- PLoS Neglected Tropical Diseases [ 1935-2727 ] ; 2016.
Abstract
Globally 68 million people are infected with lymphatic filariasis (LF), 17 million of whom have lymphedema. This study explores the effects of a lymphedema management program in Odisha State, India on morbidity and psychosocial effects associated with lymphedema.
Focus groups were held with patients (eight groups, separated by gender), their family members (eight groups), community members (four groups) and program volunteers (four groups) who had participated in a lymphedema management program for the past three years. Significant social, physical, and economic difficulties were described by patients and family members, including marriageability, social stigma, and lost workdays. However, the positive impact of the lymphedema management program was also emphasized, and many family and community members indicated that community members were accepting of patients and had some improved understanding of the etiology of the disease. Program volunteers and community members stressed the role that the program had played in educating people, though interestingly, local explanations and treatments appear to coexist with knowledge of biomedical treatments and the mosquito vector.
Local and biomedical understandings of disease can co-exist and do not preclude individuals from participating in biomedical interventions, specifically lymphedema management for those with lymphatic filariasis. There is a continued need for gender-specific psychosocial support groups to address issues particular to men and women as well as a continued need for improved economic opportunities for LF-affected patients. There is an urgent need to scale up LF-related morbidity management programs to reduce the suffering of people affected by LF.
Url:
DOI: 10.1371/journal.pntd.0004424
PubMed: 26849126
PubMed Central: 4744078
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Worrell</name><affiliation wicri:level="2"><nlm:aff id="aff002"><addr-line>Parasitic Diseases Branch, Division of Parasitic Diseases and Malaria, Center for Global Health, Centers for Disease Control and Prevention, Atlanta, Georgia, United States of America</addr-line></nlm:aff><country xml:lang="fr">États-Unis</country><wicri:regionArea>Parasitic Diseases Branch, Division of Parasitic Diseases and Malaria, Center for Global Health, Centers for Disease Control and Prevention, Atlanta, Georgia</wicri:regionArea><placeName><region type="state">Géorgie (États-Unis)</region></placeName></affiliation></author><author><name sortKey="Little, Kristen" sort="Little, Kristen" uniqKey="Little K" first="Kristen" last="Little">Kristen Little</name><affiliation wicri:level="2"><nlm:aff id="aff002"><addr-line>Parasitic Diseases Branch, Division of Parasitic Diseases and Malaria, Center for Global Health, Centers for Disease Control and Prevention, Atlanta, Georgia, United States of America</addr-line></nlm:aff><country xml:lang="fr">États-Unis</country><wicri:regionArea>Parasitic Diseases Branch, Division of Parasitic Diseases and Malaria, Center for Global Health, Centers for Disease Control and Prevention, Atlanta, Georgia</wicri:regionArea><placeName><region type="state">Géorgie (États-Unis)</region></placeName></affiliation></author><author><name sortKey="Prakash, Aishya" sort="Prakash, Aishya" uniqKey="Prakash A" first="Aishya" last="Prakash">Aishya Prakash</name><affiliation wicri:level="1"><nlm:aff id="aff003"><addr-line>Church's Auxiliary for Social Action, Pusa Road, New Delhi, India</addr-line></nlm:aff><country xml:lang="fr">Inde</country><wicri:regionArea>Church's Auxiliary for Social Action, Pusa Road, New Delhi</wicri:regionArea><wicri:noRegion>New Delhi</wicri:noRegion></affiliation></author><author><name sortKey="Patra, Inakhi" sort="Patra, Inakhi" uniqKey="Patra I" first="Inakhi" last="Patra">Inakhi Patra</name><affiliation wicri:level="1"><nlm:aff id="aff003"><addr-line>Church's Auxiliary for Social Action, Pusa Road, New Delhi, India</addr-line></nlm:aff><country xml:lang="fr">Inde</country><wicri:regionArea>Church's Auxiliary for Social Action, Pusa Road, New Delhi</wicri:regionArea><wicri:noRegion>New Delhi</wicri:noRegion></affiliation></author><author><name sortKey="Rout, Jonathan" sort="Rout, Jonathan" uniqKey="Rout J" first="Jonathan" last="Rout">Jonathan Rout</name><affiliation wicri:level="1"><nlm:aff id="aff003"><addr-line>Church's Auxiliary for Social Action, Pusa Road, New Delhi, India</addr-line></nlm:aff><country xml:lang="fr">Inde</country><wicri:regionArea>Church's Auxiliary for Social Action, Pusa Road, New Delhi</wicri:regionArea><wicri:noRegion>New Delhi</wicri:noRegion></affiliation></author><author><name sortKey="Fox, Leanne M" sort="Fox, Leanne M" uniqKey="Fox L" first="Leanne M." last="Fox">Leanne M. Fox</name><affiliation wicri:level="2"><nlm:aff id="aff002"><addr-line>Parasitic Diseases Branch, Division of Parasitic Diseases and Malaria, Center for Global Health, Centers for Disease Control and Prevention, Atlanta, Georgia, United States of America</addr-line></nlm:aff><country xml:lang="fr">États-Unis</country><wicri:regionArea>Parasitic Diseases Branch, Division of Parasitic Diseases and Malaria, Center for Global Health, Centers for Disease Control and Prevention, Atlanta, Georgia</wicri:regionArea><placeName><region type="state">Géorgie (États-Unis)</region></placeName></affiliation></author></titleStmt><publicationStmt><idno type="wicri:source">PMC</idno><idno type="pmid">26849126</idno><idno type="pmc">4744078</idno><idno type="url">http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4744078</idno><idno type="RBID">PMC:4744078</idno><idno type="doi">10.1371/journal.pntd.0004424</idno><date when="2016">2016</date><idno type="wicri:Area/Pmc/Corpus">000818</idno><idno type="wicri:explorRef" wicri:stream="Pmc" wicri:step="Corpus" wicri:corpus="PMC">000818</idno><idno type="wicri:Area/Pmc/Curation">000818</idno><idno type="wicri:explorRef" wicri:stream="Pmc" wicri:step="Curation">000818</idno><idno type="wicri:Area/Pmc/Checkpoint">000966</idno><idno type="wicri:explorRef" wicri:stream="Pmc" wicri:step="Checkpoint">000966</idno></publicationStmt><sourceDesc><biblStruct><analytic><title xml:lang="en" level="a" type="main">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</title><author><name sortKey="Cassidy, Tali" sort="Cassidy, Tali" uniqKey="Cassidy T" first="Tali" last="Cassidy">Tali Cassidy</name><affiliation wicri:level="1"><nlm:aff id="aff001"><addr-line>School of Public Health and Family Medicine, University of Cape Town, Cape Town, South Africa</addr-line></nlm:aff><country xml:lang="fr">Afrique du Sud</country><wicri:regionArea>School of Public Health and Family Medicine, University of Cape Town, Cape Town</wicri:regionArea><wicri:noRegion>Cape Town</wicri:noRegion></affiliation></author><author><name sortKey="Worrell, Caitlin M" sort="Worrell, Caitlin M" uniqKey="Worrell C" first="Caitlin M." last="Worrell">Caitlin M. Worrell</name><affiliation wicri:level="2"><nlm:aff id="aff002"><addr-line>Parasitic Diseases Branch, Division of Parasitic Diseases and Malaria, Center for Global Health, Centers for Disease Control and Prevention, Atlanta, Georgia, United States of America</addr-line></nlm:aff><country xml:lang="fr">États-Unis</country><wicri:regionArea>Parasitic Diseases Branch, Division of Parasitic Diseases and Malaria, Center for Global Health, Centers for Disease Control and Prevention, Atlanta, Georgia</wicri:regionArea><placeName><region type="state">Géorgie (États-Unis)</region></placeName></affiliation></author><author><name sortKey="Little, Kristen" sort="Little, Kristen" uniqKey="Little K" first="Kristen" last="Little">Kristen Little</name><affiliation wicri:level="2"><nlm:aff id="aff002"><addr-line>Parasitic Diseases Branch, Division of Parasitic Diseases and Malaria, Center for Global Health, Centers for Disease Control and Prevention, Atlanta, Georgia, United States of America</addr-line></nlm:aff><country xml:lang="fr">États-Unis</country><wicri:regionArea>Parasitic Diseases Branch, Division of Parasitic Diseases and Malaria, Center for Global Health, Centers for Disease Control and Prevention, Atlanta, Georgia</wicri:regionArea><placeName><region type="state">Géorgie (États-Unis)</region></placeName></affiliation></author><author><name sortKey="Prakash, Aishya" sort="Prakash, Aishya" uniqKey="Prakash A" first="Aishya" last="Prakash">Aishya Prakash</name><affiliation wicri:level="1"><nlm:aff id="aff003"><addr-line>Church's Auxiliary for Social Action, Pusa Road, New Delhi, India</addr-line></nlm:aff><country xml:lang="fr">Inde</country><wicri:regionArea>Church's Auxiliary for Social Action, Pusa Road, New Delhi</wicri:regionArea><wicri:noRegion>New Delhi</wicri:noRegion></affiliation></author><author><name sortKey="Patra, Inakhi" sort="Patra, Inakhi" uniqKey="Patra I" first="Inakhi" last="Patra">Inakhi Patra</name><affiliation wicri:level="1"><nlm:aff id="aff003"><addr-line>Church's Auxiliary for Social Action, Pusa Road, New Delhi, India</addr-line></nlm:aff><country xml:lang="fr">Inde</country><wicri:regionArea>Church's Auxiliary for Social Action, Pusa Road, New Delhi</wicri:regionArea><wicri:noRegion>New Delhi</wicri:noRegion></affiliation></author><author><name sortKey="Rout, Jonathan" sort="Rout, Jonathan" uniqKey="Rout J" first="Jonathan" last="Rout">Jonathan Rout</name><affiliation wicri:level="1"><nlm:aff id="aff003"><addr-line>Church's Auxiliary for Social Action, Pusa Road, New Delhi, India</addr-line></nlm:aff><country xml:lang="fr">Inde</country><wicri:regionArea>Church's Auxiliary for Social Action, Pusa Road, New Delhi</wicri:regionArea><wicri:noRegion>New Delhi</wicri:noRegion></affiliation></author><author><name sortKey="Fox, Leanne M" sort="Fox, Leanne M" uniqKey="Fox L" first="Leanne M." last="Fox">Leanne M. Fox</name><affiliation wicri:level="2"><nlm:aff id="aff002"><addr-line>Parasitic Diseases Branch, Division of Parasitic Diseases and Malaria, Center for Global Health, Centers for Disease Control and Prevention, Atlanta, Georgia, United States of America</addr-line></nlm:aff><country xml:lang="fr">États-Unis</country><wicri:regionArea>Parasitic Diseases Branch, Division of Parasitic Diseases and Malaria, Center for Global Health, Centers for Disease Control and Prevention, Atlanta, Georgia</wicri:regionArea><placeName><region type="state">Géorgie (États-Unis)</region></placeName></affiliation></author></analytic><series><title level="j">PLoS Neglected Tropical Diseases</title><idno type="ISSN">1935-2727</idno><idno type="eISSN">1935-2735</idno><imprint><date when="2016">2016</date></imprint></series></biblStruct></sourceDesc></fileDesc><profileDesc><textClass></textClass></profileDesc></teiHeader><front><div type="abstract" xml:lang="en"><sec id="sec001"><title>Background</title><p>Globally 68 million people are infected with lymphatic filariasis (LF), 17 million of whom have lymphedema. This study explores the effects of a lymphedema management program in Odisha State, India on morbidity and psychosocial effects associated with lymphedema.</p></sec><sec id="sec002"><title>Methodology/Principal Findings</title><p>Focus groups were held with patients (eight groups, separated by gender), their family members (eight groups), community members (four groups) and program volunteers (four groups) who had participated in a lymphedema management program for the past three years. Significant social, physical, and economic difficulties were described by patients and family members, including marriageability, social stigma, and lost workdays. However, the positive impact of the lymphedema management program was also emphasized, and many family and community members indicated that community members were accepting of patients and had some improved understanding of the etiology of the disease. Program volunteers and community members stressed the role that the program had played in educating people, though interestingly, local explanations and treatments appear to coexist with knowledge of biomedical treatments and the mosquito vector.</p></sec><sec id="sec003"><title>Conclusions/Significance</title><p>Local and biomedical understandings of disease can co-exist and do not preclude individuals from participating in biomedical interventions, specifically lymphedema management for those with lymphatic filariasis. There is a continued need for gender-specific psychosocial support groups to address issues particular to men and women as well as a continued need for improved economic opportunities for LF-affected patients. There is an urgent need to scale up LF-related morbidity management programs to reduce the suffering of people affected by LF.</p></sec></div></front><back><div1 type="bibliography"><listBibl><biblStruct><analytic><author><name sortKey="Ramaiah, Kd" uniqKey="Ramaiah K">KD Ramaiah</name></author><author><name sortKey="Ottesen, Ea" uniqKey="Ottesen E">EA Ottesen</name></author></analytic></biblStruct><biblStruct><analytic><author><name sortKey="Dreyer, G" uniqKey="Dreyer G">G Dreyer</name></author><author><name sortKey="Medeiros, Z" uniqKey="Medeiros Z">Z Medeiros</name></author><author><name sortKey="Netto, Mj" uniqKey="Netto M">MJ Netto</name></author><author><name sortKey="Leal, Nc" uniqKey="Leal N">NC Leal</name></author><author><name sortKey="De Castro, Lg" uniqKey="De Castro L">LG De Castro</name></author><author><name sortKey="Piessens, Wf" uniqKey="Piessens W">WF Piessens</name></author></analytic></biblStruct><biblStruct><analytic><author><name sortKey="Ramaiah, Kd" uniqKey="Ramaiah K">KD Ramaiah</name></author><author><name sortKey="Das, Pk" uniqKey="Das P">PK Das</name></author><author><name sortKey="Michael, E" uniqKey="Michael E">E Michael</name></author><author><name sortKey="Guyatt, Hl" uniqKey="Guyatt H">HL Guyatt</name></author></analytic></biblStruct><biblStruct><analytic><author><name sortKey="Ramu, K" uniqKey="Ramu K">K Ramu</name></author><author><name sortKey="Ramaiah, Kd" uniqKey="Ramaiah K">KD Ramaiah</name></author><author><name sortKey="Guyatt, H" uniqKey="Guyatt H">H Guyatt</name></author><author><name sortKey="Evans, D" uniqKey="Evans D">D Evans</name></author></analytic></biblStruct><biblStruct><analytic><author><name sortKey="Sabesan, S" uniqKey="Sabesan S">S Sabesan</name></author><author><name sortKey="Krishnamoorthy, K" uniqKey="Krishnamoorthy K">K Krishnamoorthy</name></author><author><name sortKey="Pani, Sp" uniqKey="Pani S">SP Pani</name></author><author><name sortKey="Panicker, Kn" uniqKey="Panicker K">KN Panicker</name></author></analytic></biblStruct><biblStruct><analytic><author><name sortKey="Zeldenryk, Lm" uniqKey="Zeldenryk L">LM Zeldenryk</name></author><author><name sortKey="Gray, M" uniqKey="Gray M">M Gray</name></author><author><name sortKey="Speare, R" uniqKey="Speare R">R Speare</name></author><author><name sortKey="Gordon, S" uniqKey="Gordon S">S Gordon</name></author><author><name sortKey="Melrose, W" uniqKey="Melrose W">W Melrose</name></author></analytic></biblStruct><biblStruct><analytic><author><name sortKey="Davey, G" uniqKey="Davey G">G Davey</name></author><author><name sortKey="Tekola, F" uniqKey="Tekola F">F Tekola</name></author><author><name sortKey="Newport, Mj" uniqKey="Newport M">MJ Newport</name></author></analytic></biblStruct><biblStruct><analytic><author><name sortKey="Tora, A" uniqKey="Tora A">A Tora</name></author><author><name sortKey="Franklin, H" uniqKey="Franklin H">H Franklin</name></author><author><name sortKey="Deribe, K" uniqKey="Deribe K">K Deribe</name></author><author><name sortKey="Reda, A A" uniqKey="Reda A">A a Reda</name></author><author><name sortKey="Davey, G" uniqKey="Davey G">G Davey</name></author></analytic></biblStruct><biblStruct><analytic><author><name sortKey="Deribe, K" uniqKey="Deribe K">K Deribe</name></author><author><name sortKey="Tomczyk, S" uniqKey="Tomczyk S">S Tomczyk</name></author><author><name sortKey="Mousley, E" uniqKey="Mousley E">E Mousley</name></author><author><name sortKey="Tamiru, A" uniqKey="Tamiru A">A Tamiru</name></author><author><name sortKey="Davey, G" uniqKey="Davey G">G Davey</name></author></analytic></biblStruct><biblStruct><analytic><author><name sortKey="Tekola, F" uniqKey="Tekola F">F Tekola</name></author><author><name sortKey="Mariam, Dh" uniqKey="Mariam D">DH Mariam</name></author><author><name sortKey="Davey, G" uniqKey="Davey G">G Davey</name></author></analytic></biblStruct><biblStruct><analytic><author><name sortKey="Mousley, E" uniqKey="Mousley E">E Mousley</name></author><author><name sortKey="Deribe, K" uniqKey="Deribe K">K Deribe</name></author><author><name sortKey="Tamiru, A" uniqKey="Tamiru A">A Tamiru</name></author><author><name sortKey="Davey, G" uniqKey="Davey G">G Davey</name></author></analytic></biblStruct><biblStruct><analytic><author><name sortKey="Person, B" uniqKey="Person B">B Person</name></author><author><name sortKey="Bartholomew, Lk" uniqKey="Bartholomew L">LK Bartholomew</name></author><author><name sortKey="Gyapong, M" uniqKey="Gyapong M">M Gyapong</name></author><author><name sortKey="Addiss, Dg" uniqKey="Addiss D">DG Addiss</name></author><author><name sortKey="Van Den Borne, B" uniqKey="Van Den Borne B">B van den Borne</name></author><author><name sortKey="Bartholomew, L K" uniqKey="Bartholomew L">L. 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<front><journal-meta><journal-id journal-id-type="nlm-ta">PLoS Negl Trop Dis</journal-id><journal-id journal-id-type="iso-abbrev">PLoS Negl Trop Dis</journal-id><journal-id journal-id-type="publisher-id">plos</journal-id><journal-id journal-id-type="pmc">plosntds</journal-id><journal-title-group><journal-title>PLoS Neglected Tropical Diseases</journal-title></journal-title-group><issn pub-type="ppub">1935-2727</issn><issn pub-type="epub">1935-2735</issn><publisher><publisher-name>Public Library of Science</publisher-name><publisher-loc>San Francisco, CA USA</publisher-loc></publisher></journal-meta><article-meta><article-id pub-id-type="pmid">26849126</article-id><article-id pub-id-type="pmc">4744078</article-id><article-id pub-id-type="doi">10.1371/journal.pntd.0004424</article-id><article-id pub-id-type="publisher-id">PNTD-D-15-01426</article-id><article-categories><subj-group subj-group-type="heading"><subject>Research Article</subject></subj-group><subj-group subj-group-type="Discipline-v3"><subject>Medicine and Health Sciences</subject><subj-group><subject>Pathology and Laboratory Medicine</subject><subj-group><subject>Signs and Symptoms</subject><subj-group><subject>Edema</subject><subj-group><subject>Lymphedema</subject></subj-group></subj-group></subj-group></subj-group></subj-group><subj-group subj-group-type="Discipline-v3"><subject>Medicine and Health Sciences</subject><subj-group><subject>Parasitic Diseases</subject><subj-group><subject>Helminth Infections</subject><subj-group><subject>Filariasis</subject><subj-group><subject>Lymphatic Filariasis</subject></subj-group></subj-group></subj-group></subj-group></subj-group><subj-group subj-group-type="Discipline-v3"><subject>Medicine and Health Sciences</subject><subj-group><subject>Tropical Diseases</subject><subj-group><subject>Neglected Tropical Diseases</subject><subj-group><subject>Lymphatic Filariasis</subject></subj-group></subj-group></subj-group></subj-group><subj-group subj-group-type="Discipline-v3"><subject>Medicine and Health Sciences</subject><subj-group><subject>Pathology and Laboratory Medicine</subject><subj-group><subject>Signs and Symptoms</subject><subj-group><subject>Fevers</subject></subj-group></subj-group></subj-group></subj-group><subj-group subj-group-type="Discipline-v3"><subject>Social Sciences</subject><subj-group><subject>Sociology</subject><subj-group><subject>Sexual and Gender Issues</subject></subj-group></subj-group></subj-group><subj-group subj-group-type="Discipline-v3"><subject>Medicine and Health Sciences</subject><subj-group><subject>Pathology and Laboratory Medicine</subject><subj-group><subject>Signs and Symptoms</subject><subj-group><subject>Hydrocele</subject></subj-group></subj-group></subj-group></subj-group><subj-group subj-group-type="Discipline-v3"><subject>People and Places</subject><subj-group><subject>Geographical Locations</subject><subj-group><subject>Asia</subject><subj-group><subject>India</subject></subj-group></subj-group></subj-group></subj-group><subj-group subj-group-type="Discipline-v3"><subject>Social Sciences</subject><subj-group><subject>Economics</subject><subj-group><subject>Economic Analysis</subject><subj-group><subject>Economic Impact Analysis</subject></subj-group></subj-group></subj-group></subj-group><subj-group subj-group-type="Discipline-v3"><subject>People and Places</subject><subj-group><subject>Population Groupings</subject><subj-group><subject>Ethnicities</subject><subj-group><subject>Oriyas</subject></subj-group></subj-group></subj-group></subj-group></article-categories><title-group><article-title>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</article-title><alt-title alt-title-type="running-head">Experiences of an Indian Community-Based Lymphedema Management Program</alt-title></title-group><contrib-group><contrib contrib-type="author"><name><surname>Cassidy</surname><given-names>Tali</given-names></name><xref ref-type="aff" rid="aff001"><sup>1</sup></xref><xref ref-type="corresp" rid="cor001">*</xref></contrib><contrib contrib-type="author"><name><surname>Worrell</surname><given-names>Caitlin M.</given-names></name><xref ref-type="aff" rid="aff002"><sup>2</sup></xref></contrib><contrib contrib-type="author"><name><surname>Little</surname><given-names>Kristen</given-names></name><xref ref-type="aff" rid="aff002"><sup>2</sup></xref></contrib><contrib contrib-type="author"><name><surname>Prakash</surname><given-names>Aishya</given-names></name><xref ref-type="aff" rid="aff003"><sup>3</sup></xref></contrib><contrib contrib-type="author"><name><surname>Patra</surname><given-names>Inakhi</given-names></name><xref ref-type="aff" rid="aff003"><sup>3</sup></xref></contrib><contrib contrib-type="author"><name><surname>Rout</surname><given-names>Jonathan</given-names></name><xref ref-type="aff" rid="aff003"><sup>3</sup></xref></contrib><contrib contrib-type="author"><name><surname>Fox</surname><given-names>LeAnne M.</given-names></name><xref ref-type="aff" rid="aff002"><sup>2</sup></xref></contrib></contrib-group><aff id="aff001"><label>1</label><addr-line>School of Public Health and Family Medicine, University of Cape Town, Cape Town, South Africa</addr-line></aff><aff id="aff002"><label>2</label><addr-line>Parasitic Diseases Branch, Division of Parasitic Diseases and Malaria, Center for Global Health, Centers for Disease Control and Prevention, Atlanta, Georgia, United States of America</addr-line></aff><aff id="aff003"><label>3</label><addr-line>Church's Auxiliary for Social Action, Pusa Road, New Delhi, India</addr-line></aff><contrib-group><contrib contrib-type="editor"><name><surname>Mackenzie</surname><given-names>Charles D.</given-names></name><role>Editor</role><xref ref-type="aff" rid="edit1"></xref></contrib></contrib-group><aff id="edit1"><addr-line>Michigan State University, UNITED STATES</addr-line></aff><author-notes><fn fn-type="conflict" id="coi001"><p>The authors have declared that no competing interests exist.</p></fn><fn fn-type="con" id="contrib001"><p>Conceived and designed the experiments: CMW KL LMF AP IP JR. Performed the experiments: CMW KL LMF AP IP JR. Analyzed the data: TC CMW LMF. Wrote the paper: TC CMW LMF.</p></fn><corresp id="cor001">* E-mail: <email>talicassidy@gmail.com</email></corresp></author-notes><pub-date pub-type="epub"><day>5</day><month>2</month><year>2016</year></pub-date><pub-date pub-type="collection"><month>2</month><year>2016</year></pub-date><volume>10</volume><issue>2</issue><elocation-id>e0004424</elocation-id><history><date date-type="received"><day>19</day><month>8</month><year>2015</year></date><date date-type="accepted"><day>11</day><month>1</month><year>2016</year></date></history><permissions><license xlink:href="https://creativecommons.org/publicdomain/zero/1.0/"><license-p>This is an open access article, free of all copyright, and may be freely reproduced, distributed, transmitted, modified, built upon, or otherwise used by anyone for any lawful purpose. The work is made available under the <ext-link ext-link-type="uri" xlink:href="https://creativecommons.org/publicdomain/zero/1.0/">Creative Commons CC0</ext-link> public domain dedication.</license-p></license></permissions><self-uri content-type="pdf" xlink:type="simple" xlink:href="pntd.0004424.pdf"></self-uri><abstract><sec id="sec001"><title>Background</title><p>Globally 68 million people are infected with lymphatic filariasis (LF), 17 million of whom have lymphedema. This study explores the effects of a lymphedema management program in Odisha State, India on morbidity and psychosocial effects associated with lymphedema.</p></sec><sec id="sec002"><title>Methodology/Principal Findings</title><p>Focus groups were held with patients (eight groups, separated by gender), their family members (eight groups), community members (four groups) and program volunteers (four groups) who had participated in a lymphedema management program for the past three years. Significant social, physical, and economic difficulties were described by patients and family members, including marriageability, social stigma, and lost workdays. However, the positive impact of the lymphedema management program was also emphasized, and many family and community members indicated that community members were accepting of patients and had some improved understanding of the etiology of the disease. Program volunteers and community members stressed the role that the program had played in educating people, though interestingly, local explanations and treatments appear to coexist with knowledge of biomedical treatments and the mosquito vector.</p></sec><sec id="sec003"><title>Conclusions/Significance</title><p>Local and biomedical understandings of disease can co-exist and do not preclude individuals from participating in biomedical interventions, specifically lymphedema management for those with lymphatic filariasis. There is a continued need for gender-specific psychosocial support groups to address issues particular to men and women as well as a continued need for improved economic opportunities for LF-affected patients. There is an urgent need to scale up LF-related morbidity management programs to reduce the suffering of people affected by LF.</p></sec></abstract><abstract abstract-type="summary"><title>Author Summary</title><p>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.</p></abstract><funding-group><funding-statement>The funding for this work was provided by IMA World Health and the Centers for Disease Control and Prevention. The content is solely the responsibility of the authors and does not necessarily represent the official views of the Centers for Diseases Control and Prevention. The funders had no role in the study design, data collection and analysis, decision to publish, or preparation of the manuscript.</funding-statement></funding-group><counts><fig-count count="0"></fig-count><table-count count="2"></table-count><page-count count="15"></page-count></counts><custom-meta-group><custom-meta id="data-availability"><meta-name>Data Availability</meta-name><meta-value>Due to the difficulty of anonymising focus group transcripts in this study, the data have not been made publicly available. Specific inquiries about the transcripts can be directed to the Monica E. Parise (details provided below) and excerpts of the data can be provided upon request. CAPT Monica E. Parise, M.D. Deputy Director for Science and Program Division of Parasitic Diseases and Malaria Center for Global Health Centers for Disease Control and Prevention 1600 Clifton Road, MS A06 Atlanta, GA 30333 phone: 404-718-4784 fax: 404-718-4816 email: <email>mparise@cdc.gov</email></meta-value></custom-meta></custom-meta-group></article-meta><notes><title>Data Availability</title><p>Due to the difficulty of anonymising focus group transcripts in this study, the data have not been made publicly available. Specific inquiries about the transcripts can be directed to the Monica E. Parise (details provided below) and excerpts of the data can be provided upon request. CAPT Monica E. Parise, M.D. Deputy Director for Science and Program Division of Parasitic Diseases and Malaria Center for Global Health Centers for Disease Control and Prevention 1600 Clifton Road, MS A06 Atlanta, GA 30333 phone: 404-718-4784 fax: 404-718-4816 email: <email>mparise@cdc.gov</email></p></notes></front></pmc><affiliations><list><country><li>Afrique du Sud</li><li>Inde</li><li>États-Unis</li></country><region><li>Géorgie (États-Unis)</li></region></list><tree><country name="Afrique du Sud"><noRegion><name sortKey="Cassidy, Tali" sort="Cassidy, Tali" uniqKey="Cassidy T" first="Tali" last="Cassidy">Tali Cassidy</name></noRegion></country><country name="États-Unis"><region name="Géorgie (États-Unis)"><name sortKey="Worrell, Caitlin M" sort="Worrell, Caitlin M" uniqKey="Worrell C" first="Caitlin M." last="Worrell">Caitlin M. Worrell</name></region><name sortKey="Fox, Leanne M" sort="Fox, Leanne M" uniqKey="Fox L" first="Leanne M." last="Fox">Leanne M. Fox</name><name sortKey="Little, Kristen" sort="Little, Kristen" uniqKey="Little K" first="Kristen" last="Little">Kristen Little</name></country><country name="Inde"><noRegion><name sortKey="Prakash, Aishya" sort="Prakash, Aishya" uniqKey="Prakash A" first="Aishya" last="Prakash">Aishya Prakash</name></noRegion><name sortKey="Patra, Inakhi" sort="Patra, Inakhi" uniqKey="Patra I" first="Inakhi" last="Patra">Inakhi Patra</name><name sortKey="Rout, Jonathan" sort="Rout, Jonathan" uniqKey="Rout J" first="Jonathan" last="Rout">Jonathan Rout</name></country></tree></affiliations></record>Pour manipuler ce document sous Unix (Dilib)
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