Neglected Patients with a Neglected Disease? A Qualitative Study of Lymphatic Filariasis
Identifieur interne : 002B17 ( Pmc/Checkpoint ); précédent : 002B16; suivant : 002B18Neglected Patients with a Neglected Disease? A Qualitative Study of Lymphatic Filariasis
Auteurs : Myrtle Perera [Sri Lanka] ; Margaret Whitehead [Royaume-Uni] ; David Molyneux [Royaume-Uni] ; Mirani Weerasooriya [Sri Lanka] ; Godfrey Gunatilleke [Sri Lanka]Source :
- PLoS Neglected Tropical Diseases [ 1935-2727 ] ; 2007.
Abstract
Lymphatic filariasis (LF) is a so-called neglected tropical disease, currently overshadowed by higher-profile efforts to address malaria, tuberculosis, and HIV/AIDS. Despite recent successes in arresting transmission, some 40 million people who already have the disease have been largely neglected. This study aims to increase understanding of how this vulnerable, neglected group can be helped.
We used purposive sampling to select 60 men and women with filarial lymphoedema (45 with filarial elephantiasis and 15 men with filarial hydrocoele) from the south of Sri Lanka in 2004–2005. Participants were selected to give a balance of men and women and poor and nonpoor, and a range of stages of the disease. Participants' experiences and the consequences of their disease for the household were explored with in-depth qualitative, semistructured interviews.
LF was extremely debilitating to participants over long periods of time. The stigma attached to the condition caused social isolation and emotional distress, and delayed diagnosis and treatment, resulting in undue advancement of the disease. Free treatment services at government clinics were avoided because the participants' condition would be identifiable in public. Loss of income due to the condition was reported by all households in the sample, not just the poorest. Households that were already on low incomes were pushed into near destitution, from which it was almost impossible to escape. Affected members of low-income households also had less opportunity to obtain appropriate treatment from distant clinics, and had living and working conditions that made hygiene and compliance difficult.
This highly vulnerable category of patients has low visibility, thus becoming marginalized and forgotten. With an estimated 300,000 total cases of elephantiasis and/or oedema in Sri Lanka, and around 300,000 men with filarial hydrocoele, the affected households will need help and support for many years to come. These individuals should be specially targeted for identification, outreach, and care. The global strategy for elimination is aimed at the cessation of transmission, but there will remain some 40 million individuals with clinical manifestations whose needs and problems are illustrated in this study.
Url:
DOI: 10.1371/journal.pntd.0000128
PubMed: 18060080
PubMed Central: 2100378
Affiliations:
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PMC:2100378Le document en format XML
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<front><div type="abstract" xml:lang="en"><sec><title>Background</title>
<p>Lymphatic filariasis (LF) is a so-called neglected tropical disease, currently overshadowed by higher-profile efforts to address malaria, tuberculosis, and HIV/AIDS. Despite recent successes in arresting transmission, some 40 million people who already have the disease have been largely neglected. This study aims to increase understanding of how this vulnerable, neglected group can be helped.</p>
</sec>
<sec><title>Methods</title>
<p>We used purposive sampling to select 60 men and women with filarial lymphoedema (45 with filarial elephantiasis and 15 men with filarial hydrocoele) from the south of Sri Lanka in 2004–2005. Participants were selected to give a balance of men and women and poor and nonpoor, and a range of stages of the disease. Participants' experiences and the consequences of their disease for the household were explored with in-depth qualitative, semistructured interviews.</p>
</sec>
<sec><title>Findings</title>
<p>LF was extremely debilitating to participants over long periods of time. The stigma attached to the condition caused social isolation and emotional distress, and delayed diagnosis and treatment, resulting in undue advancement of the disease. Free treatment services at government clinics were avoided because the participants' condition would be identifiable in public. Loss of income due to the condition was reported by all households in the sample, not just the poorest. Households that were already on low incomes were pushed into near destitution, from which it was almost impossible to escape. Affected members of low-income households also had less opportunity to obtain appropriate treatment from distant clinics, and had living and working conditions that made hygiene and compliance difficult.</p>
</sec>
<sec><title>Significance</title>
<p>This highly vulnerable category of patients has low visibility, thus becoming marginalized and forgotten. With an estimated 300,000 total cases of elephantiasis and/or oedema in Sri Lanka, and around 300,000 men with filarial hydrocoele, the affected households will need help and support for many years to come. These individuals should be specially targeted for identification, outreach, and care. The global strategy for elimination is aimed at the cessation of transmission, but there will remain some 40 million individuals with clinical manifestations whose needs and problems are illustrated in this study.</p>
</sec>
</div>
</front>
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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>
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<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, USA</publisher-loc>
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<article-id pub-id-type="pmc">2100378</article-id>
<article-id pub-id-type="publisher-id">07-PNTD-RA-0093R3</article-id>
<article-id pub-id-type="doi">10.1371/journal.pntd.0000128</article-id>
<article-categories><subj-group subj-group-type="heading"><subject>Research Article</subject>
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<subj-group subj-group-type="Discipline"><subject>Infectious Diseases/Helminth Infections</subject>
<subject>Infectious Diseases/Helminth Infections</subject>
<subject>Public Health and Epidemiology/Health Policy</subject>
<subject>Public Health and Epidemiology/Health Policy</subject>
<subject>Public Health and Epidemiology/Health Services Research and Economics</subject>
<subject>Public Health and Epidemiology/Health Services Research and Economics</subject>
<subject>Public Health and Epidemiology/Infectious Diseases</subject>
<subject>Public Health and Epidemiology/Infectious Diseases</subject>
<subject>Public Health and Epidemiology/Social and Behavioral Determinants of Health</subject>
<subject>Public Health and Epidemiology/Social and Behavioral Determinants of Health</subject>
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<title-group><article-title>Neglected Patients with a Neglected Disease? A Qualitative Study of Lymphatic Filariasis</article-title>
<alt-title alt-title-type="running-head">Qualitative Study of Consequences of LF</alt-title>
</title-group>
<contrib-group><contrib contrib-type="author"><name><surname>Perera</surname>
<given-names>Myrtle</given-names>
</name>
<xref ref-type="aff" rid="aff1"><sup>1</sup>
</xref>
</contrib>
<contrib contrib-type="author"><name><surname>Whitehead</surname>
<given-names>Margaret</given-names>
</name>
<xref ref-type="aff" rid="aff2"><sup>2</sup>
</xref>
<xref ref-type="corresp" rid="cor1"><sup>*</sup>
</xref>
</contrib>
<contrib contrib-type="author"><name><surname>Molyneux</surname>
<given-names>David</given-names>
</name>
<xref ref-type="aff" rid="aff3"><sup>3</sup>
</xref>
</contrib>
<contrib contrib-type="author"><name><surname>Weerasooriya</surname>
<given-names>Mirani</given-names>
</name>
<xref ref-type="aff" rid="aff4"><sup>4</sup>
</xref>
</contrib>
<contrib contrib-type="author"><name><surname>Gunatilleke</surname>
<given-names>Godfrey</given-names>
</name>
<xref ref-type="aff" rid="aff1"><sup>1</sup>
</xref>
</contrib>
</contrib-group>
<aff id="aff1"><label>1</label>
<addr-line>Marga Institute, Colombo, Sri Lanka</addr-line>
</aff>
<aff id="aff2"><label>2</label>
<addr-line>Division of Public Health, University of Liverpool, Liverpool, United Kingdom</addr-line>
</aff>
<aff id="aff3"><label>3</label>
<addr-line>Lymphatic Filariasis Support Centre, Liverpool School of Tropical Medicine, Pembroke Place, Liverpool, United Kingdom</addr-line>
</aff>
<aff id="aff4"><label>4</label>
<addr-line>Filariasis Research, Training and Service Unit, Department of Parasitology, Faculty of Medicine, University of Ruhuna, Galle, Sri Lanka</addr-line>
</aff>
<contrib-group><contrib contrib-type="editor"><name><surname>Weiss</surname>
<given-names>Mitchell</given-names>
</name>
<role>Academic Editor</role>
<xref ref-type="aff" rid="edit1"></xref>
</contrib>
</contrib-group>
<aff id="edit1">Swiss Tropical Institute, Switzerland</aff>
<author-notes><corresp id="cor1">* E-mail: <email>mmw@liverpool.ac.uk</email>
</corresp>
<fn fn-type="con"><p>Conceived and designed the experiments: D. Molyneux M. Whitehead M. Perera. Performed the experiments: M. Perera. Analyzed the data: D. Molyneux M. Whitehead M. Perera G. Gunatilleke. Contributed reagents/materials/analysis tools: M. Weerasooriya. Wrote the paper: D. Molyneux M. Whitehead M. Perera M. Weerasooriya G. Gunatilleke.</p>
</fn>
</author-notes>
<pub-date pub-type="collection"><month>11</month>
<year>2007</year>
</pub-date>
<pub-date pub-type="epub"><day>21</day>
<month>11</month>
<year>2007</year>
</pub-date>
<volume>1</volume>
<issue>2</issue>
<elocation-id>e128</elocation-id>
<history><date date-type="received"><day>8</day>
<month>5</month>
<year>2007</year>
</date>
<date date-type="accepted"><day>23</day>
<month>10</month>
<year>2007</year>
</date>
</history>
<permissions><copyright-statement>Perera et al.</copyright-statement>
<copyright-year>2007</copyright-year>
<license xlink:href="http://creativecommons.org/licenses/by/4.0/"><license-p>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 properly credited.</license-p>
</license>
</permissions>
<abstract><sec><title>Background</title>
<p>Lymphatic filariasis (LF) is a so-called neglected tropical disease, currently overshadowed by higher-profile efforts to address malaria, tuberculosis, and HIV/AIDS. Despite recent successes in arresting transmission, some 40 million people who already have the disease have been largely neglected. This study aims to increase understanding of how this vulnerable, neglected group can be helped.</p>
</sec>
<sec><title>Methods</title>
<p>We used purposive sampling to select 60 men and women with filarial lymphoedema (45 with filarial elephantiasis and 15 men with filarial hydrocoele) from the south of Sri Lanka in 2004–2005. Participants were selected to give a balance of men and women and poor and nonpoor, and a range of stages of the disease. Participants' experiences and the consequences of their disease for the household were explored with in-depth qualitative, semistructured interviews.</p>
</sec>
<sec><title>Findings</title>
<p>LF was extremely debilitating to participants over long periods of time. The stigma attached to the condition caused social isolation and emotional distress, and delayed diagnosis and treatment, resulting in undue advancement of the disease. Free treatment services at government clinics were avoided because the participants' condition would be identifiable in public. Loss of income due to the condition was reported by all households in the sample, not just the poorest. Households that were already on low incomes were pushed into near destitution, from which it was almost impossible to escape. Affected members of low-income households also had less opportunity to obtain appropriate treatment from distant clinics, and had living and working conditions that made hygiene and compliance difficult.</p>
</sec>
<sec><title>Significance</title>
<p>This highly vulnerable category of patients has low visibility, thus becoming marginalized and forgotten. With an estimated 300,000 total cases of elephantiasis and/or oedema in Sri Lanka, and around 300,000 men with filarial hydrocoele, the affected households will need help and support for many years to come. These individuals should be specially targeted for identification, outreach, and care. The global strategy for elimination is aimed at the cessation of transmission, but there will remain some 40 million individuals with clinical manifestations whose needs and problems are illustrated in this study.</p>
</sec>
</abstract>
<abstract abstract-type="summary"><title>Author Summary</title>
<p>Lymphatic filariasis (LF) is a tropical disease causing extreme swelling of the limbs and male genitals. Despite recent successes in preventing transmission of the disease, some 40 million people worldwide who already have the disease have been largely neglected. We aimed to increase understanding of how this vulnerable, neglected group can be helped, by asking people with LF in Sri Lanka to recount their own experiences.</p>
<p>Study participants reported that LF was extremely debilitating over a long period of time. The social isolation from stigma caused emotional distress and delayed diagnosis and treatment. Free treatment services at government clinics were avoided because the participants' condition would be identifiable in public. Loss of income due to the condition was reported by all households, not only those of the poorest. Households that were already on low incomes were pushed into near destitution by LF. Low-income households also had fewer opportunities to obtain effective treatment from distant clinics, and had living and working conditions that made treatment more difficult.</p>
<p>With an estimated 300,000 people with swelling of the limbs in Sri Lanka, and around 300,000 men with swelling of the genitals, we conclude that the affected households will need help and support for many years to come, and offer suggestions for immediate action.</p>
</abstract>
<counts><page-count count="8"></page-count>
</counts>
</article-meta>
</front>
</pmc>
<affiliations><list><country><li>Royaume-Uni</li>
<li>Sri Lanka</li>
</country>
</list>
<tree><country name="Sri Lanka"><noRegion><name sortKey="Perera, Myrtle" sort="Perera, Myrtle" uniqKey="Perera M" first="Myrtle" last="Perera">Myrtle Perera</name>
</noRegion>
<name sortKey="Gunatilleke, Godfrey" sort="Gunatilleke, Godfrey" uniqKey="Gunatilleke G" first="Godfrey" last="Gunatilleke">Godfrey Gunatilleke</name>
<name sortKey="Weerasooriya, Mirani" sort="Weerasooriya, Mirani" uniqKey="Weerasooriya M" first="Mirani" last="Weerasooriya">Mirani Weerasooriya</name>
</country>
<country name="Royaume-Uni"><noRegion><name sortKey="Whitehead, Margaret" sort="Whitehead, Margaret" uniqKey="Whitehead M" first="Margaret" last="Whitehead">Margaret Whitehead</name>
</noRegion>
<name sortKey="Molyneux, David" sort="Molyneux, David" uniqKey="Molyneux D" first="David" last="Molyneux">David Molyneux</name>
</country>
</tree>
</affiliations>
</record>
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