What motivates Ebola survivors to donate plasma during an emergency clinical trial? The case of Ebola-Tx in Guinea.
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...
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doaj-0ad0bc8ba45b455e89620345af025d742020-11-25T02:34:04ZengPublic Library of Science (PLoS)PLoS Neglected Tropical Diseases1935-27271935-27352018-10-011210e000688510.1371/journal.pntd.0006885What motivates Ebola survivors to donate plasma during an emergency clinical trial? The case of Ebola-Tx in Guinea.Maya RonseAlmudena Marí SáezCharlotte GryseelsMelanie Bannister-TyrrellAlexandre DelamouAlain GuillardMustapha BrikiFrédéric BigeyNyankoye HabaJohan van GriensvenKoen Peeters GrietensINTRODUCTION: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.http://europepmc.org/articles/PMC6219816?pdf=render |
collection |
DOAJ |
language |
English |
format |
Article |
sources |
DOAJ |
author |
Maya Ronse Almudena Marí Sáez Charlotte Gryseels Melanie Bannister-Tyrrell Alexandre Delamou Alain Guillard Mustapha Briki Frédéric Bigey Nyankoye Haba Johan van Griensven Koen Peeters Grietens |
spellingShingle |
Maya Ronse Almudena Marí Sáez Charlotte Gryseels Melanie Bannister-Tyrrell Alexandre Delamou Alain Guillard Mustapha Briki Frédéric Bigey Nyankoye Haba Johan van Griensven Koen Peeters Grietens What motivates Ebola survivors to donate plasma during an emergency clinical trial? The case of Ebola-Tx in Guinea. PLoS Neglected Tropical Diseases |
author_facet |
Maya Ronse Almudena Marí Sáez Charlotte Gryseels Melanie Bannister-Tyrrell Alexandre Delamou Alain Guillard Mustapha Briki Frédéric Bigey Nyankoye Haba Johan van Griensven Koen Peeters Grietens |
author_sort |
Maya Ronse |
title |
What motivates Ebola survivors to donate plasma during an emergency clinical trial? The case of Ebola-Tx in Guinea. |
title_short |
What motivates Ebola survivors to donate plasma during an emergency clinical trial? The case of Ebola-Tx in Guinea. |
title_full |
What motivates Ebola survivors to donate plasma during an emergency clinical trial? The case of Ebola-Tx in Guinea. |
title_fullStr |
What motivates Ebola survivors to donate plasma during an emergency clinical trial? The case of Ebola-Tx in Guinea. |
title_full_unstemmed |
What motivates Ebola survivors to donate plasma during an emergency clinical trial? The case of Ebola-Tx in Guinea. |
title_sort |
what motivates ebola survivors to donate plasma during an emergency clinical trial? the case of ebola-tx in guinea. |
publisher |
Public Library of Science (PLoS) |
series |
PLoS Neglected Tropical Diseases |
issn |
1935-2727 1935-2735 |
publishDate |
2018-10-01 |
description |
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. |
url |
http://europepmc.org/articles/PMC6219816?pdf=render |
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