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Perceptions on the collection of body fluids for research on persistence of Ebola virus: A qualitative study

BACKGROUND: Against the background of the international public health emergency related to the Ebola outbreak in the Democratic Republic of Congo, in addition to other recent large Ebola epidemics, the issue of transmission due to viral persistence from survivors’ body fluids is becoming increasingl...

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Autores principales: Kutalek, Ruth, Baingana, Florence, Sevalie, Stephen, Broutet, Nathalie, Thorson, Anna
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Public Library of Science 2020
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7252625/
https://www.ncbi.nlm.nih.gov/pubmed/32407312
http://dx.doi.org/10.1371/journal.pntd.0008327
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author Kutalek, Ruth
Baingana, Florence
Sevalie, Stephen
Broutet, Nathalie
Thorson, Anna
author_facet Kutalek, Ruth
Baingana, Florence
Sevalie, Stephen
Broutet, Nathalie
Thorson, Anna
author_sort Kutalek, Ruth
collection PubMed
description BACKGROUND: Against the background of the international public health emergency related to the Ebola outbreak in the Democratic Republic of Congo, in addition to other recent large Ebola epidemics, the issue of transmission due to viral persistence from survivors’ body fluids is becoming increasingly urgent. Clinical research in which body fluids play a role is critical and semen testing programs are part of the suggested response to the outbreak. Broad acceptance and understanding of testing programs and research, often in resource poor settings, is essential for the success and sustainability of clinical studies and an accurate epidemic response. Study participants’ perceptions on the collection of body fluids are therefore relevant for the programmatic planning and implementation of clinical studies. STUDY AIM AND METHODS: In this qualitative study we aimed to explore the perceptions on bio-sampling in the Sierra Leone Ebola Virus Persistence Study (SLEVP study). We were interested to understand how norms on gender and sexuality related to perceptions and experiences of study participants and staff, specifically, in what way perceptions of the body, on intimacy and on body fluids related to the study process. We purposively sampled former study participants for in-depth interviews and focus-group discussions. We conducted 56 in-depth interviews and eight focus group discussions with 93 participants. In a participatory approach we included study participants in the analysis of data. RESULTS: Overall the SLEVP study was well perceived by study participants and study staff. Study participants conceived the testing of their body fluids positively and saw it as a useful means to know their status. However, some study participants were ambivalent and sometimes reluctant towards sampling of certain body fluids (especially semen, blood and vaginal fluid) due to religious or cultural reasons. Self-sampling was described by study participants as a highly unusual phenomenon. Several narratives were related to the loss of body fluids (especially semen) that would make men weak and powerless, or women dizzy and sick (especially blood). Some rumors indicated mistrust related to study aims that may have been expressions of broader societal challenges and historical circumstances. These reservations could eventually be overcome by guaranteeing confidentiality and privacy and by comprehensive professional counseling. CONCLUSION: In the course of the sampling exercise, study participants were often obliged to transgress cultural and intimate boundaries. It is therefore important to understand the potential importance some of these perceptions have on the recruitment of study participants and the acceptability of studies, on a symbolic as well as a structural level. In order to capture any reservations it is necessary to provide plenty of possibilities of information sharing and follow-up of continuous consent.
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spelling pubmed-72526252020-06-10 Perceptions on the collection of body fluids for research on persistence of Ebola virus: A qualitative study Kutalek, Ruth Baingana, Florence Sevalie, Stephen Broutet, Nathalie Thorson, Anna PLoS Negl Trop Dis Research Article BACKGROUND: Against the background of the international public health emergency related to the Ebola outbreak in the Democratic Republic of Congo, in addition to other recent large Ebola epidemics, the issue of transmission due to viral persistence from survivors’ body fluids is becoming increasingly urgent. Clinical research in which body fluids play a role is critical and semen testing programs are part of the suggested response to the outbreak. Broad acceptance and understanding of testing programs and research, often in resource poor settings, is essential for the success and sustainability of clinical studies and an accurate epidemic response. Study participants’ perceptions on the collection of body fluids are therefore relevant for the programmatic planning and implementation of clinical studies. STUDY AIM AND METHODS: In this qualitative study we aimed to explore the perceptions on bio-sampling in the Sierra Leone Ebola Virus Persistence Study (SLEVP study). We were interested to understand how norms on gender and sexuality related to perceptions and experiences of study participants and staff, specifically, in what way perceptions of the body, on intimacy and on body fluids related to the study process. We purposively sampled former study participants for in-depth interviews and focus-group discussions. We conducted 56 in-depth interviews and eight focus group discussions with 93 participants. In a participatory approach we included study participants in the analysis of data. RESULTS: Overall the SLEVP study was well perceived by study participants and study staff. Study participants conceived the testing of their body fluids positively and saw it as a useful means to know their status. However, some study participants were ambivalent and sometimes reluctant towards sampling of certain body fluids (especially semen, blood and vaginal fluid) due to religious or cultural reasons. Self-sampling was described by study participants as a highly unusual phenomenon. Several narratives were related to the loss of body fluids (especially semen) that would make men weak and powerless, or women dizzy and sick (especially blood). Some rumors indicated mistrust related to study aims that may have been expressions of broader societal challenges and historical circumstances. These reservations could eventually be overcome by guaranteeing confidentiality and privacy and by comprehensive professional counseling. CONCLUSION: In the course of the sampling exercise, study participants were often obliged to transgress cultural and intimate boundaries. It is therefore important to understand the potential importance some of these perceptions have on the recruitment of study participants and the acceptability of studies, on a symbolic as well as a structural level. In order to capture any reservations it is necessary to provide plenty of possibilities of information sharing and follow-up of continuous consent. Public Library of Science 2020-05-14 /pmc/articles/PMC7252625/ /pubmed/32407312 http://dx.doi.org/10.1371/journal.pntd.0008327 Text en © 2020 Kutalek et al http://creativecommons.org/licenses/by/4.0/ This is an open access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0/) , which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.
spellingShingle Research Article
Kutalek, Ruth
Baingana, Florence
Sevalie, Stephen
Broutet, Nathalie
Thorson, Anna
Perceptions on the collection of body fluids for research on persistence of Ebola virus: A qualitative study
title Perceptions on the collection of body fluids for research on persistence of Ebola virus: A qualitative study
title_full Perceptions on the collection of body fluids for research on persistence of Ebola virus: A qualitative study
title_fullStr Perceptions on the collection of body fluids for research on persistence of Ebola virus: A qualitative study
title_full_unstemmed Perceptions on the collection of body fluids for research on persistence of Ebola virus: A qualitative study
title_short Perceptions on the collection of body fluids for research on persistence of Ebola virus: A qualitative study
title_sort perceptions on the collection of body fluids for research on persistence of ebola virus: a qualitative study
topic Research Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7252625/
https://www.ncbi.nlm.nih.gov/pubmed/32407312
http://dx.doi.org/10.1371/journal.pntd.0008327
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