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J Empir Res Hum Res Ethics. 2016 Oct;11(4):322-333. doi: 10.1177/1556264616675202. Epub 2016 Nov 9.

". . . I've Gone Through This My Own Self, So I Practice What I Preach . . . ".

Author information

1
1 HIV AIDS Vaccines Ethics Group, University of KwaZulu-Natal, Pietermaritzburg South Africa.
2
2 South African Research Ethics Training Initiative (SARETI), University of KwaZulu-Natal, Pietermaritzburg, South Africa.
3
3 University of Toronto, Ontario, Canada.
4
4 University of Cape Town, South Africa.

Abstract

There has not been enough study of the processes by which site staff help participating community members and potential participants to understand complicated concepts for HIV vaccine trials. This article describes strategies reported in six focus group discussions with Community Advisory Board members, educators, and consent counselors at an active HIV vaccine trial site in South Africa. Thematic analysis identified a considerable range of strategies, and findings suggest that such staff do not only try to promote understanding of critical information but also try to build trust in communicated information, to respect cultural differences, and to promote voluntariness. Findings also suggest occasional tensions between these implicit goals. Actual engagement and consent encounters at HIV vaccine trial sites should be observed, recorded, and analyzed; and the relationship between practices and valued outcomes should be assessed. These efforts may help to make consent-related encounters as "potent" as possible given finite resources.

KEYWORDS:

clinical trials; communication in research; comprehension; ethics in HIV-prevention trials; informed consent; stakeholder engagement

PMID:
27830644
PMCID:
PMC5791520
DOI:
10.1177/1556264616675202
[Indexed for MEDLINE]
Free PMC Article

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