Unit Medical Anthropology and Global Health, Department of Social and Preventive Medicine, Center for Public Health, Medical University of Vienna, Austria.
WHO country office Sierra Leone, Freetown, Sierra Leone.
PLoS Negl Trop Dis. 2020 May 14;14(5):e0008327. doi: 10.1371/journal.pntd.0008327. eCollection 2020 May.
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.
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.
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.
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.
在与刚果民主共和国埃博拉疫情有关的国际公共卫生紧急事件的背景下，除了其他最近的大型埃博拉疫情外，由于幸存者体液中的病毒持续存在而导致传播的问题也变得越来越紧迫。在其中发挥作用的体液的临床研究至关重要，精液检测计划是针对疫情爆发的建议应对措施的一部分。在资源匮乏的环境中，广泛接受和理解检测计划和研究对于临床研究的成功和可持续性以及对疫情的准确应对至关重要。因此，研究参与者对体液采集的看法对于临床研究的方案规划和实施具有重要意义。
在这项定性研究中，我们旨在探讨塞拉利昂埃博拉病毒持续存在研究（SLEVP 研究）中对生物样本采集的看法。我们有兴趣了解与研究参与者和工作人员的看法和经验相关的性别和性规范，特别是在身体、亲密关系和与研究过程相关的体液方面的看法。我们对以前的研究参与者进行了有针对性的访谈和焦点小组讨论。我们与 93 名参与者进行了 56 次深入访谈和 8 次焦点小组讨论。我们采用参与式方法让研究参与者参与数据分析。
总体而言，SLEVP 研究受到研究参与者和研究人员的好评。研究参与者对他们的体液检测持积极态度，并认为这是了解他们身体状况的有用手段。然而，由于宗教或文化原因，一些研究参与者对某些体液的采样（特别是精液、血液和阴道液）犹豫不决，有时甚至不愿接受。自我采样被研究参与者描述为一种非常不寻常的现象。一些叙述涉及到身体液体的流失（特别是精液），这会使男性变得虚弱无力，或使女性头晕和生病（特别是血液）。一些谣言表明，对研究目的的不信任可能是对更广泛的社会挑战和历史情况的表达。通过保证保密性和隐私性以及全面的专业咨询，可以克服这些保留意见。
在采样过程中，研究参与者经常被迫跨越文化和亲密界限。因此，了解这些看法在招募研究参与者和接受研究方面的潜在重要性，无论是在象征性层面还是在结构性层面上，都是很重要的。为了捕捉到任何保留意见，有必要提供大量的信息共享和持续同意的后续机会。
