Literature DB >> 29544144

"We are the heroes because we are ready to die for this country": Participants' decision-making and grounded ethics in an Ebola vaccine clinical trial.

Angus Fayia Tengbeh1, Luisa Enria2, Elizabeth Smout3, Thomas Mooney3, Mike Callaghan3, David Ishola3, Bailah Leigh1, Deborah Watson-Jones4, Brian Greenwood3, Heidi Larson3, Shelley Lees3.   

Abstract

The 2014-2016 Ebola epidemic presented a challenging setting in which to carry out clinical trials. This paper reports findings from social science research carried out in Kambia, Northern Sierra Leone during first year of an Ebola vaccine trial (August 2015-July 2016). The social science team collected data through ethnographic observation, 42 in depth interviews; 4 life narratives; 200 exit interviews; 31 key informant interviews; and 8 focus group discussions with trial participants and community members not enrolled in the trial. Whilst research often focuses on why people refuse vaccination, we instead explore participant motivations for volunteering for the study, in spite of prevailing anxieties, rumours and mistrust during and after the Ebola outbreak. In so doing the paper contributes to on-going debates about research ethics and community engagement in resource poor contexts, offering reflections from an emergency and post-epidemic setting. We analyse participants' perceptions of the risks and benefits of participations, highlighting the importance of a contextual approach. We focus on four types of motivation: altruism; curiosity and hope; health-seeking; and notions of exchange, and argue for the role of social science in developing grounded research ethics and community engagement strategies that can take into account context and local realities.
Copyright © 2018 The Authors. Published by Elsevier Ltd.. All rights reserved.

Entities:  

Keywords:  Clinical trials; Ebola; Research ethics; Sierra Leone; Vaccine

Mesh:

Substances:

Year:  2018        PMID: 29544144     DOI: 10.1016/j.socscimed.2018.03.008

Source DB:  PubMed          Journal:  Soc Sci Med        ISSN: 0277-9536            Impact factor:   4.634


  13 in total

1.  Perceptions and acceptability of an experimental Ebola vaccine among health care workers, frontline staff, and the general public during the 2014-2015 Ebola outbreak in Sierra Leone.

Authors:  Mohamed F Jalloh; Mohammad B Jalloh; Alison Albert; Brent Wolff; Amy Callis; Aparna Ramakrishnan; Emily Cramer; Paul Sengeh; Samuel Abu Pratt; Lansana Conteh; Rana Hajjeh; Rebecca Bunnell; John T Redd; Anna Mia Ekström; Helena Nordenstedt
Journal:  Vaccine       Date:  2019-02-10       Impact factor: 3.641

2.  Addressing challenges for clinical research responses to emerging epidemics and pandemics: a scoping review.

Authors:  Louise Sigfrid; Katherine Maskell; Peter G Bannister; Sharif A Ismail; Shelui Collinson; Sadie Regmi; Claire Blackmore; Eli Harriss; Kajsa-Stina Longuere; Nina Gobat; Peter Horby; Mike Clarke; Gail Carson
Journal:  BMC Med       Date:  2020-06-25       Impact factor: 8.775

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

Authors:  Almudena Marí Sáez; Maya Ronse; Alexandre Delamou; Nyankoye Haba; Frédéric Bigey; Johan van Griensven; Koen Peeters Grietens
Journal:  PLoS Negl Trop Dis       Date:  2020-04-22

4.  Comparative ethnographies of medical research: materiality, social relations, citizenship and hope in Tanzania and Sierra Leone.

Authors:  Shelley Lees; Luisa Enria
Journal:  Int Health       Date:  2020-11-09       Impact factor: 2.473

5.  Safety and long-term immunogenicity of the two-dose heterologous Ad26.ZEBOV and MVA-BN-Filo Ebola vaccine regimen in adults in Sierra Leone: a combined open-label, non-randomised stage 1, and a randomised, double-blind, controlled stage 2 trial.

Authors:  David Ishola; Daniela Manno; Muhammed O Afolabi; Babajide Keshinro; Viki Bockstal; Baimba Rogers; Kwabena Owusu-Kyei; Alimamy Serry-Bangura; Ibrahim Swaray; Brett Lowe; Dickens Kowuor; Frank Baiden; Thomas Mooney; Elizabeth Smout; Brian Köhn; Godfrey T Otieno; Morrison Jusu; Julie Foster; Mohamed Samai; Gibrilla Fadlu Deen; Heidi Larson; Shelley Lees; Neil Goldstein; Katherine E Gallagher; Auguste Gaddah; Dirk Heerwegh; Benoit Callendret; Kerstin Luhn; Cynthia Robinson; Maarten Leyssen; Brian Greenwood; Macaya Douoguih; Bailah Leigh; Deborah Watson-Jones
Journal:  Lancet Infect Dis       Date:  2021-09-13       Impact factor: 71.421

6.  Hope and trust in times of Zika: the views of caregivers and healthcare workers at the forefront of the epidemic in Brazil.

Authors:  Clarissa Simas; Loveday Penn-Kekana; Hannah Kuper; Tereza Maciel Lyra; Maria Elisabeth Lopes Moreira; Maria do Socorro Veloso de Albuquerque; Thália Velho Barreto de Araújo; Ana Paula Lopes de Melo; Corina Helena Figueira Mendes; Martha Cristina Nunes Moreira; Marcos Antonio Ferreira do Nascimento; Camila Pimentel; Marcia Pinto; Sandra Valongueiro; Heidi Larson
Journal:  Health Policy Plan       Date:  2020-10-01       Impact factor: 3.344

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

Authors:  Samantha Vanderslott; Manya Van Ryneveld; Mark Marchant; Shelley Lees; Sylvie Kwedi Nolna; Vicki Marsh
Journal:  BMC Public Health       Date:  2021-04-01       Impact factor: 3.295

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

Authors:  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
Journal:  PLoS Negl Trop Dis       Date:  2018-10-17

9.  Lessons learned from engaging communities for Ebola vaccine trials in Sierra Leone: reciprocity, relatability, relationships and respect (the four R's).

Authors:  Sara Dada; Gillian McKay; Ana Mateus; Shelley Lees
Journal:  BMC Public Health       Date:  2019-12-11       Impact factor: 3.295

10.  Exploring willingness to participate in future Human Infection Studies in Lusaka, Zambia: A nested qualitative exploratory study.

Authors:  Evelyn Muleba Kunda-Ngándu; Masuzyo Chirwa-Chobe; Chanda Mwamba; Jenala Chipungu; Esnart Ng'andu; Hope Mwanyungwi Chinganya; Michelo Simuyandi; Roma Chilengi; Anjali Sharma
Journal:  PLoS One       Date:  2021-07-09       Impact factor: 3.240

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