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Civil society perspectives on negative biomedical HIV prevention trial results and implications for future trials

Bibliographic Data

ID19443919
AuthorsZaynab Essack (0000-0002-8867-3415, University of KwaZulu-Natal), Jennifer Koen (University of KwaZulu-Natal), C Slack (0000-0002-6608-0248, Umkhuseli Innovation and Research Management), Graham Lindegger (University of KwaZulu-Natal), P A Newman (0000-0003-0444-5915, University of Toronto, corresponding author)
Year2012
Volume24
Issue10
Pages1249-1254
Publication date2012-10-01
Open AccessNo
TypeARTICLE
VenueAIDS Care (JOURNAL)
Journal identifiersISSN: 0954-0121 • E-ISSN: 1360-0451
PublisherInforma UK Limited (PUBLISHER • GB)
DOI10.1080/09540121.2012.656566
PMID22360605
OpenAlexW2088453543
LanguageEN
Citations received3
References cited21

Community engagement is crucial to ongoing development and testing of sorely needed new biomedical HIV prevention technologies. Yet, negative trial results raise significant challenges for community engagement in HIV prevention trials, including the early termination of the Cellulose Sulfate microbicide trial and two Phase IIb HIV vaccine trials (STEP and Phambili). The present study aimed to explore the perspectives and experiences of civil society organization (CSO) representatives regarding negative HIV prevention trial results and perceived implications for future trials. We conducted in-depth interviews with 14 respondents from a broad range of South African and international CSOs, and analyzed data using thematic analysis. CSO representatives reported disappointment in response to negative trial results, but acknowledged such outcomes as inherent to clinical research. Respondents indicated that in theory negative trial results seem likely to impact on willingness to participate in future trials, but that in practice people in South Africa have continued to volunteer. Negative trial results were described as having contributed to improving ethical standards, and to a re-evaluation of the scientific agenda. Such negative results were identified as potentially impacting on funding for trials and engagement activities. Our findings indicate that trial closures may be used constructively to support opportunities for reflection and renewed vigilance in strategies for stakeholder engagement, communicating trial outcomes, and building research literacy among communities; however, these strategies require sustained resources for community engagement and capacity-building

Clinical trial · Community engagement · Family medicine · Men who have sex with men · Political science · Pre-exposure prophylaxis · Public relations · Qualitative research · Social science · Sociology · Stakeholder engagement · Thematic analysis · Ethics in Clinical Research · HIV Research and Treatment · HIV/AIDS Research and Interventions · Medicine · Psychology

  • Commentary on “A Framework for Community and Stakeholder Engagement

    Open Access•P A Newman, C Slack et al.•Journal of Empirical Research on…•2018

  • ‘It Looks Like You Just Want Them When Things Get Rough’

    Open Access•Jennifer Koen, Zaynab Essack et al.•Developing World Bioethics•2013

  • Why would you promote something that is less percent safer than a condom

    Open Access•Clara Rubincam, P A Newman et al.•SAHARA-J Journal of Social…•2018

  • Doing qualitative research

    Robyn Henderson•Studies in Continuing Education•2011

  • Media reporting of tenofovir trials in Cambodia and Cameroon

    Open Access•Edward Mills, Edward J Mills et al.•BMC International Health and…•2005

  • Motivators of enrolment in HIV vaccine trials

    Shayesta Dhalla, Gary Poole•AIDS Care•2011

  • Using thematic analysis in psychology

    Open Access•Braun, Virginia Braun et al.•Qualitative Research in Psychology•2006

  • The performative function of expectations in translating treatment to prevention

    Open Access•M Rosengarten, Mike Michael•Social Science & Medicine•2009

Citations per year0.23
Citation span2013 - 2018 (6)
Highly citedNo

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Ethnos_APP • Open Source Project • MIT License • Frontend v2.0.0 • Privacy and Cookies • API Documentation: api.ethnos.app/docs • API Source Code: GitHub • DOI: 10.5281/zenodo.17049435 • Frontend Source Code: GitHub • DOI: 10.5281/zenodo.17050053 • cruz.rio.br • Expectantes Misericordiae