Neglected Patients with a Neglected Disease? A Qualitative Study of Lymphatic Filariasis
Identifieur interne : 006453 ( Main/Exploration ); précédent : 006452; suivant : 006454Neglected 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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A Qualitative Study of Lymphatic Filariasis</title><author><name sortKey="Perera, Myrtle" sort="Perera, Myrtle" uniqKey="Perera M" first="Myrtle" last="Perera">Myrtle Perera</name><affiliation wicri:level="1"><nlm:aff id="aff1"><addr-line>Marga Institute, Colombo, Sri Lanka</addr-line></nlm:aff><country xml:lang="fr">Sri Lanka</country><wicri:regionArea>Marga Institute, Colombo</wicri:regionArea><wicri:noRegion>Colombo</wicri:noRegion></affiliation></author><author><name sortKey="Whitehead, Margaret" sort="Whitehead, Margaret" uniqKey="Whitehead M" first="Margaret" last="Whitehead">Margaret Whitehead</name><affiliation wicri:level="1"><nlm:aff id="aff2"><addr-line>Division of Public Health, University of Liverpool, Liverpool, United Kingdom</addr-line></nlm:aff><country xml:lang="fr">Royaume-Uni</country><wicri:regionArea>Division of Public Health, University of Liverpool, Liverpool</wicri:regionArea><wicri:noRegion>Liverpool</wicri:noRegion></affiliation></author><author><name sortKey="Molyneux, David" sort="Molyneux, David" uniqKey="Molyneux D" first="David" last="Molyneux">David Molyneux</name><affiliation wicri:level="1"><nlm:aff id="aff3"><addr-line>Lymphatic Filariasis Support Centre, Liverpool School of Tropical Medicine, Pembroke Place, Liverpool, United Kingdom</addr-line></nlm:aff><country xml:lang="fr">Royaume-Uni</country><wicri:regionArea>Lymphatic Filariasis Support Centre, Liverpool School of Tropical Medicine, Pembroke Place, Liverpool</wicri:regionArea><wicri:noRegion>Liverpool</wicri:noRegion></affiliation></author><author><name sortKey="Weerasooriya, Mirani" sort="Weerasooriya, Mirani" uniqKey="Weerasooriya M" first="Mirani" last="Weerasooriya">Mirani Weerasooriya</name><affiliation wicri:level="1"><nlm:aff id="aff4"><addr-line>Filariasis Research, Training and Service Unit, Department of Parasitology, Faculty of Medicine, University of Ruhuna, Galle, Sri Lanka</addr-line></nlm:aff><country xml:lang="fr">Sri Lanka</country><wicri:regionArea>Filariasis Research, Training and Service Unit, Department of Parasitology, Faculty of Medicine, University of Ruhuna, Galle</wicri:regionArea><wicri:noRegion>Galle</wicri:noRegion></affiliation></author><author><name sortKey="Gunatilleke, Godfrey" sort="Gunatilleke, Godfrey" uniqKey="Gunatilleke G" first="Godfrey" last="Gunatilleke">Godfrey Gunatilleke</name><affiliation wicri:level="1"><nlm:aff id="aff1"><addr-line>Marga Institute, Colombo, Sri Lanka</addr-line></nlm:aff><country xml:lang="fr">Sri Lanka</country><wicri:regionArea>Marga Institute, Colombo</wicri:regionArea><wicri:noRegion>Colombo</wicri:noRegion></affiliation></author></titleStmt><publicationStmt><idno type="wicri:source">PMC</idno><idno type="pmid">18060080</idno><idno type="pmc">2100378</idno><idno type="url">http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2100378</idno><idno type="RBID">PMC:2100378</idno><idno type="doi">10.1371/journal.pntd.0000128</idno><date when="2007">2007</date><idno type="wicri:Area/Pmc/Corpus">002876</idno><idno type="wicri:explorRef" wicri:stream="Pmc" wicri:step="Corpus" wicri:corpus="PMC">002876</idno><idno type="wicri:Area/Pmc/Curation">002875</idno><idno type="wicri:explorRef" wicri:stream="Pmc" wicri:step="Curation">002875</idno><idno type="wicri:Area/Pmc/Checkpoint">002B17</idno><idno type="wicri:explorRef" wicri:stream="Pmc" wicri:step="Checkpoint">002B17</idno><idno type="wicri:Area/Ncbi/Merge">000506</idno><idno type="wicri:Area/Ncbi/Curation">000506</idno><idno type="wicri:Area/Ncbi/Checkpoint">000506</idno><idno type="wicri:doubleKey">1935-2727:2007:Perera M:neglected:patients:with</idno><idno type="wicri:Area/Main/Merge">006558</idno><idno type="wicri:Area/Main/Curation">006453</idno><idno type="wicri:Area/Main/Exploration">006453</idno></publicationStmt><sourceDesc><biblStruct><analytic><title xml:lang="en" level="a" type="main">Neglected Patients with a Neglected Disease? A Qualitative Study of Lymphatic Filariasis</title><author><name sortKey="Perera, Myrtle" sort="Perera, Myrtle" uniqKey="Perera M" first="Myrtle" last="Perera">Myrtle Perera</name><affiliation wicri:level="1"><nlm:aff id="aff1"><addr-line>Marga Institute, Colombo, Sri Lanka</addr-line></nlm:aff><country xml:lang="fr">Sri Lanka</country><wicri:regionArea>Marga Institute, Colombo</wicri:regionArea><wicri:noRegion>Colombo</wicri:noRegion></affiliation></author><author><name sortKey="Whitehead, Margaret" sort="Whitehead, Margaret" uniqKey="Whitehead M" first="Margaret" last="Whitehead">Margaret Whitehead</name><affiliation wicri:level="1"><nlm:aff id="aff2"><addr-line>Division of Public Health, University of Liverpool, Liverpool, United Kingdom</addr-line></nlm:aff><country xml:lang="fr">Royaume-Uni</country><wicri:regionArea>Division of Public Health, University of Liverpool, Liverpool</wicri:regionArea><wicri:noRegion>Liverpool</wicri:noRegion></affiliation></author><author><name sortKey="Molyneux, David" sort="Molyneux, David" uniqKey="Molyneux D" first="David" last="Molyneux">David Molyneux</name><affiliation wicri:level="1"><nlm:aff id="aff3"><addr-line>Lymphatic Filariasis Support Centre, Liverpool School of Tropical Medicine, Pembroke Place, Liverpool, United Kingdom</addr-line></nlm:aff><country xml:lang="fr">Royaume-Uni</country><wicri:regionArea>Lymphatic Filariasis Support Centre, Liverpool School of Tropical Medicine, Pembroke Place, Liverpool</wicri:regionArea><wicri:noRegion>Liverpool</wicri:noRegion></affiliation></author><author><name sortKey="Weerasooriya, Mirani" sort="Weerasooriya, Mirani" uniqKey="Weerasooriya M" first="Mirani" last="Weerasooriya">Mirani Weerasooriya</name><affiliation wicri:level="1"><nlm:aff id="aff4"><addr-line>Filariasis Research, Training and Service Unit, Department of Parasitology, Faculty of Medicine, University of Ruhuna, Galle, Sri Lanka</addr-line></nlm:aff><country xml:lang="fr">Sri Lanka</country><wicri:regionArea>Filariasis Research, Training and Service Unit, Department of Parasitology, Faculty of Medicine, University of Ruhuna, Galle</wicri:regionArea><wicri:noRegion>Galle</wicri:noRegion></affiliation></author><author><name sortKey="Gunatilleke, Godfrey" sort="Gunatilleke, Godfrey" uniqKey="Gunatilleke G" first="Godfrey" last="Gunatilleke">Godfrey Gunatilleke</name><affiliation wicri:level="1"><nlm:aff id="aff1"><addr-line>Marga Institute, Colombo, Sri Lanka</addr-line></nlm:aff><country xml:lang="fr">Sri Lanka</country><wicri:regionArea>Marga Institute, Colombo</wicri:regionArea><wicri:noRegion>Colombo</wicri:noRegion></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="2007">2007</date></imprint></series></biblStruct></sourceDesc></fileDesc><profileDesc><textClass></textClass></profileDesc></teiHeader><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><back><div1 type="bibliography"><listBibl><biblStruct><analytic><author><name sortKey="Molyneux, Dh" uniqKey="Molyneux D">DH Molyneux</name></author></analytic></biblStruct><biblStruct><analytic><author><name sortKey="Anonymous" uniqKey="Anonymous">Anonymous</name></author></analytic></biblStruct><biblStruct><analytic><author><name sortKey="King, C" uniqKey="King C">C King</name></author><author><name sortKey="Dickman, K" uniqKey="Dickman K">K Dickman</name></author><author><name sortKey="Tisch, D" uniqKey="Tisch D">D Tisch</name></author></analytic></biblStruct><biblStruct><analytic><author><name sortKey="Hotez, P" uniqKey="Hotez P">P Hotez</name></author><author><name sortKey="Molyneux, D" uniqKey="Molyneux D">D Molyneux</name></author><author><name 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Wickremasinghe</name></author><author><name sortKey="Ekanayake, S" uniqKey="Ekanayake S">S Ekanayake</name></author><author><name sortKey="Perera, Msa" uniqKey="Perera M">MSA Perera</name></author></analytic></biblStruct><biblStruct><analytic><author><name sortKey="Whitehead, M" uniqKey="Whitehead M">M Whitehead</name></author><author><name sortKey="Dahlgren, G" uniqKey="Dahlgren G">G Dahlgren</name></author><author><name sortKey="Evans, T" uniqKey="Evans T">T Evans</name></author></analytic></biblStruct><biblStruct><analytic><author><name sortKey="Ramu, K" uniqKey="Ramu K">K Ramu</name></author><author><name sortKey="Ramaiah, K" uniqKey="Ramaiah K">K 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="Haddix, Ac" uniqKey="Haddix A">AC Haddix</name></author><author><name sortKey="Kestler, A" 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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>Pour manipuler ce document sous Unix (Dilib)
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