What motivates Ebola survivors to donate plasma during an emergency clinical trial? The case of Ebola-Tx in Guinea

Abstract

IntroductionDuring the 2014 Ebola Virus Disease (EVD) epidemic, the Ebola-Tx trial evaluated the use of convalescent plasma (CP) in Guinea. The effectiveness of plasmapheresis trials depends on the recruitment of plasma donors. This paper describes what motivated or deterred EVD survivors to donate CP, providing insights for future plasmapheresis trials and epidemic preparedness.MethodsThis qualitative study, part of Ebola-Tx, researched and addressed emergent trial difficulties through interviewing, participant observation and focus group discussions. Sampling was theoretical and retroductive analysis was done in NVivo 10.ResultsWillingness or hesitance to participate in plasma donation depended on factors at the interface of pre-existing social dynamics; the impact of the disease and the consequent emergency response including the trial set-up. For volunteers, motivation to donate was mainly related to the feeling of social responsibility inspired by having survived EVD and to positive perceptions of plasmapheresis technology despite still unknown trial outcomes. Conversely, confidentiality concerns when volunteering due to stigmatization of survivors and perceived decrease in vital strength and in antibodies when donating, leading to fears of loss in protection against EVD, were main deterrents. The dynamic (dis)trust in Ebola Response Actors and in other survivors further determined willingness to participate and lead to the emergence/decline of rumours related to blood stealing and treatment effectiveness. Historic inter-ethnic relations in the health care setting further defined volunteering along socio-economic and ethnic lines. Finally, lack of follow-up and of dedicated care further impacted on motivation to volunteer.ConclusionsEbola-Tx was the first trial to solicit and evaluate blood-product donation as an experimental treatment on a large scale in Sub-Saharan Africa. An effective donation system requires directly engaging with emergent social barriers and providing an effective ethical response, including improved and transparent communication, effective follow-up after donation, assuring confidentiality and determining ethical incentives.

How can community engagement in health research be strengthened for infectious disease outbreaks in Sub-Saharan Africa? A scoping review of the literature

“…In terms of the types of social science methods employed, for the Ebola treatment trial with convalescent plasma, an anthropological pre-trial assessment was carried out to better understand the context, acceptability of EVD therapies, stakeholders expectations ([ 18 ], p. 648) as well as volunteer motivations, concerns, and their underlying influences [ 49 ]. It is unclear who conducted the assessment or whether results were published as a separate set of findings; however, the findings demonstrated the importance of stakeholder communication “to understand and follow up what people thought, felt, perceived, and how they acted during the EVD outbreak and consequential health control activities” ([ 18 ], p. 648).…”

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The Plasma Mobile, ‘A gift from heaven’: The impact of health technology transfer on trial perceptions and expectations during the Ebola-Tx Trial, Conakry

“…People working inside the bus embodied this logic and consequently felt more performant in the Plasma Mobile. At the same time, both CNTS staff and some survivors perceived that being in a separate space like the bus was beneficial to keep the donations confidential, tailored to the survivors' needs and to avoid being criticized or misunderstood by their relatives, which would have a negative impact on their social life as explained in previous work [11] notwithstanding other survivors considered such a closed and restricted space suspicious. This restricted space was, however, part of the larger space of the Donka Hospital that was considered public and open, helping donors to accept and trust the more restricted space of the Plasma Mobile.…”

“…"We didn't know the difference between blood and plasma. [ Donors had different expectations and experiences during the donation process [11]. Donors sometimes voiced a certain distress related to the Plasma Mobile, to the machine per se, to the unknown experience the plasmapheresis entailed, to the needles and to the pain of the process as well as the post-donation consequences (dizziness, weakness, falling ill. .…”

“…A research consortium was created among different research institutions and transfusion services. The use of CP as medicine [10,11] in the Ebola-Tx trial was proven safe [9] and feasible [12] but did not significantly improve the EVD survival rate [13]. As part of Ebola-Tx, a Plasma Mobile donated by the Bill and Melinda Gates Foundation (BMGF) served as a plasma collection centre.…”