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

• Published in: PLOS Neglected Tropical Diseases
• Main Authors: Ruth Kutalek, Florence Baingana, Stephen Sevalie, Nathalie Broutet, Anna Thorson
• Format: Article in Journal/Newspaper
• Language: English
• Published: Public Library of Science (PLoS) 2020
• Subjects: Arctic medicine. Tropical medicine; RC955-962; Public aspects of medicine; RA1-1270; Arctic
• Online Access: https://doi.org/10.1371/journal.pntd.0008327; https://doaj.org/article/f1aacc402dd9425aba5c6cd5cd9df550

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 ...