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

Maya Ronse, Almudena Marí Sáez, Charlotte Gryseels, Melanie Bannister-Tyrrell, Alexandre Delamou, Alain Guillard, Mustapha Briki, Frédéric Bigey, Nyankoye Haba, Johan van Griensven and Koen Peeters Grietens

PLOS Neglected Tropical Diseases, 2018, vol. 12, issue 10, 1-14

Abstract: Introduction: During 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. Methods: This 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. Results: Willingness 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. Conclusions: Ebola-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. Author summary: During the 2014 West-African Ebola Virus Disease epidemic, the Ebola-Tx clinical trial in Guinea aimed to determine whether the administration of Ebola antibodies from the blood plasma of Ebola survivors could increase Ebola patients’ survival rate. Ebola-Tx was the first trial to solicit and evaluate blood-product donation as an experimental treatment on a large scale in Sub-Saharan Africa. In this qualitative study, part of the Ebola-Tx study, we report on factors of motivation and demotivation influencing Ebola survivors to donate their plasma. Understanding these factors is essential as the successful recruitment of this specific subgroup, providing the therapy itself, directly impacts the effectiveness of such a trial. We show that organizing an effective and ethical donation system requires directly engaging with emerging social barriers at the interface between pre-existing social dynamics, the impact of the disease, and the consequent emergency response including the trial set-up. These results provide insights that can be useful for future plasma trials but also for emergency clinical trials as part of general epidemic preparedness.

Date: 2018
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Persistent link: https://EconPapers.repec.org/RePEc:plo:pntd00:0006885

DOI: 10.1371/journal.pntd.0006885

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