Living invisible: HTLV-1-infected persons and the lack of care in public health.
INTRODUCTION: Human T-cell lymphotropic virus type 1 (HTLV-1) infection is intractable and endemic in many countries. Although a few individuals have severe symptoms, most patients remain asymptomatic throughout their lives and their infections may be unknown to many health professionals. HTLV-1 can...
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ftdoajarticles:oai:doaj.org/article:6964a663ca9046369631adc10a826306 2023-05-15T15:15:27+02:00 Living invisible: HTLV-1-infected persons and the lack of care in public health. Karina Franco Zihlmann Augusta Thereza de Alvarenga Jorge Casseb 2012-01-01T00:00:00Z https://doi.org/10.1371/journal.pntd.0001705 https://doaj.org/article/6964a663ca9046369631adc10a826306 EN eng Public Library of Science (PLoS) http://europepmc.org/articles/PMC3373594?pdf=render https://doaj.org/toc/1935-2727 https://doaj.org/toc/1935-2735 1935-2727 1935-2735 doi:10.1371/journal.pntd.0001705 https://doaj.org/article/6964a663ca9046369631adc10a826306 PLoS Neglected Tropical Diseases, Vol 6, Iss 6, p e1705 (2012) Arctic medicine. Tropical medicine RC955-962 Public aspects of medicine RA1-1270 article 2012 ftdoajarticles https://doi.org/10.1371/journal.pntd.0001705 2022-12-31T00:05:02Z INTRODUCTION: Human T-cell lymphotropic virus type 1 (HTLV-1) infection is intractable and endemic in many countries. Although a few individuals have severe symptoms, most patients remain asymptomatic throughout their lives and their infections may be unknown to many health professionals. HTLV-1 can be considered a neglected public health problem and there are not many studies specifically on patients' needs and emotional experiences. OBJECTIVE: To better understand how women and men living with HTLV-1 experience the disease and what issues exist in their healthcare processes. METHODS: A qualitative study using participant observation and life story interview methods was conducted with 13 symptomatic and asymptomatic patients, at the outpatient clinic of the Emilio Ribas Infectious Diseases Institute, in Sao Paulo, Brazil. RESULTS AND DISCUSSION: The interviewees stated that HTLV-1 is a largely unknown infection to society and health professionals. Counseling is rare, but when it occurs, focuses on the low probability of developing HTLV-1 related diseases without adequately addressing the risk of infection transmission or reproductive decisions. The diagnosis of HTLV-1 can remain a stigmatized secret as patients deny their situations. As a consequence, the disease remains invisible and there are potentially negative implications for patient self-care and the identification of infected relatives. This perception seems to be shared by some health professionals who do not appear to understand the importance of preventing new infections. CONCLUSIONS: Patients and medical staff referred that the main focus was the illness risk, but not the identification of infected relatives to prevent new infections. This biomedical model of care makes prevention difficult, contributes to the lack of care in public health for HTLV-1, and further perpetuates the infection among populations. Thus, HTLV-1 patients experience an "invisibility" of their complex demands and feel that their rights as citizens are ignored. Article in Journal/Newspaper Arctic Directory of Open Access Journals: DOAJ Articles Arctic PLoS Neglected Tropical Diseases 6 6 e1705 |
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Open Polar |
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Directory of Open Access Journals: DOAJ Articles |
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ftdoajarticles |
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English |
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Arctic medicine. Tropical medicine RC955-962 Public aspects of medicine RA1-1270 |
spellingShingle |
Arctic medicine. Tropical medicine RC955-962 Public aspects of medicine RA1-1270 Karina Franco Zihlmann Augusta Thereza de Alvarenga Jorge Casseb Living invisible: HTLV-1-infected persons and the lack of care in public health. |
topic_facet |
Arctic medicine. Tropical medicine RC955-962 Public aspects of medicine RA1-1270 |
description |
INTRODUCTION: Human T-cell lymphotropic virus type 1 (HTLV-1) infection is intractable and endemic in many countries. Although a few individuals have severe symptoms, most patients remain asymptomatic throughout their lives and their infections may be unknown to many health professionals. HTLV-1 can be considered a neglected public health problem and there are not many studies specifically on patients' needs and emotional experiences. OBJECTIVE: To better understand how women and men living with HTLV-1 experience the disease and what issues exist in their healthcare processes. METHODS: A qualitative study using participant observation and life story interview methods was conducted with 13 symptomatic and asymptomatic patients, at the outpatient clinic of the Emilio Ribas Infectious Diseases Institute, in Sao Paulo, Brazil. RESULTS AND DISCUSSION: The interviewees stated that HTLV-1 is a largely unknown infection to society and health professionals. Counseling is rare, but when it occurs, focuses on the low probability of developing HTLV-1 related diseases without adequately addressing the risk of infection transmission or reproductive decisions. The diagnosis of HTLV-1 can remain a stigmatized secret as patients deny their situations. As a consequence, the disease remains invisible and there are potentially negative implications for patient self-care and the identification of infected relatives. This perception seems to be shared by some health professionals who do not appear to understand the importance of preventing new infections. CONCLUSIONS: Patients and medical staff referred that the main focus was the illness risk, but not the identification of infected relatives to prevent new infections. This biomedical model of care makes prevention difficult, contributes to the lack of care in public health for HTLV-1, and further perpetuates the infection among populations. Thus, HTLV-1 patients experience an "invisibility" of their complex demands and feel that their rights as citizens are ignored. |
format |
Article in Journal/Newspaper |
author |
Karina Franco Zihlmann Augusta Thereza de Alvarenga Jorge Casseb |
author_facet |
Karina Franco Zihlmann Augusta Thereza de Alvarenga Jorge Casseb |
author_sort |
Karina Franco Zihlmann |
title |
Living invisible: HTLV-1-infected persons and the lack of care in public health. |
title_short |
Living invisible: HTLV-1-infected persons and the lack of care in public health. |
title_full |
Living invisible: HTLV-1-infected persons and the lack of care in public health. |
title_fullStr |
Living invisible: HTLV-1-infected persons and the lack of care in public health. |
title_full_unstemmed |
Living invisible: HTLV-1-infected persons and the lack of care in public health. |
title_sort |
living invisible: htlv-1-infected persons and the lack of care in public health. |
publisher |
Public Library of Science (PLoS) |
publishDate |
2012 |
url |
https://doi.org/10.1371/journal.pntd.0001705 https://doaj.org/article/6964a663ca9046369631adc10a826306 |
geographic |
Arctic |
geographic_facet |
Arctic |
genre |
Arctic |
genre_facet |
Arctic |
op_source |
PLoS Neglected Tropical Diseases, Vol 6, Iss 6, p e1705 (2012) |
op_relation |
http://europepmc.org/articles/PMC3373594?pdf=render https://doaj.org/toc/1935-2727 https://doaj.org/toc/1935-2735 1935-2727 1935-2735 doi:10.1371/journal.pntd.0001705 https://doaj.org/article/6964a663ca9046369631adc10a826306 |
op_doi |
https://doi.org/10.1371/journal.pntd.0001705 |
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PLoS Neglected Tropical Diseases |
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6 |
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6 |
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e1705 |
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