Access to treatment in hiv prevention trials: Perspectives from a south african community

Nicola Barsdorf, Suzanne Maman, Nancy Kass, Catherine Slack

Research output: Contribution to journalArticlepeer-review

Abstract

Access to treatment, in HIV vaccine trials (HVTs), remains et al. In most prevention trials, including in South Africa, participants who seroconvert are referred to publicly funded programmes for treatment. This strategy is problematic when there is inadequate and uneven access to public sector antiretroviral therapy (ART) and support resources. The responsibilities, if any, of researchers, sponsors and public health authorities involved in HVTs has been hotly debated among academics, scholars, representatives of international organizations and sponsors. However, there is little published on community perceptions. Recent guidance asserts that communities should make inputs into treatment and care decisions. This qualitative study explored a South African community's perceptions of who should provide what to HVT participants as well as how and why this should be done. Twenty-nine adults working at or attending five primary health care clinics in two rural areas in KwaZulu-Natal participated in in-depth interviews. Respondents expressed that researchers should 'help participants to access' treatment and care 'because they are in a position to do so' and 'are in a relationship with' trial participants. Respondents suggested that researchers could help by 'facilitating referral' until such time that participants can access care and treatment on their own. We highlight a series of implications for researchers in HVTs, including their need to be aware of prospective participants' considerable trust in and respect for researchers, the responsibility that this places on them, and the need for clear communication with communities so as not to erode community trust.

Original languageEnglish (US)
Pages (from-to)78-87
Number of pages10
JournalDeveloping World Bioethics
Volume10
Issue number2
DOIs
StatePublished - Aug 2010

Keywords

  • Community perspective
  • HIV trials
  • HIV/AIDS
  • Research ethics
  • South Africa

ASJC Scopus subject areas

  • Issues, ethics and legal aspects
  • Health(social science)
  • Health Policy

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