Community perspectives on care options for HIV prevention trial participants

Abstract

There is on-going global debate and policy-setting concerning researchers’ obligations to meet the health needs of people participating in HIV prevention trials in resource-poor settings. The perspectives of local community stakeholders on this issue are poorly understood as most of what is presented on behalf of communities where research takes place is anecdotal commentary. Using qualitative methods (130 in-depth interviews and 20 focus groups) we assessed perceived fairness of different strategies to meet the health needs of women who become HIV-infected during a hypothetical vaginal microbicide trial. Respondents included HIV prevention research participants, community stakeholders and health-care service providers in ten sites in seven countries (South Africa, Malawi, Tanzania, Zimbabwe, Zambia, India, US). Many respondents perceived referrals to be a potentially fair way to address care and treatment needs but concerns were also voiced about the adequacy of local health-care options and the ability of trial participants to access options. Most respondents viewed the provision of antiretroviral treatment by researchers to HIV-infected trial participants as unfair if treatment was not sustained beyond the end of the trial. The results underscore the importance of effectively linking trial participants to sustainable, community-based treatment and care.

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See Acknowledgements for details

Acknowledgments

Support for this work was provided by the National Institute of Allergy and Infectious diseases through the HIV Prevention Trials Network and the US Agency for International Development (Contraceptive Technology and Family Planning program Research Cooperative Agreement, AID/CCP-A-00-95-000222). The content of this publication does not necessarily reflect the views or policies of NIAID, HPTN or USAID, nor does mention of organizations imply endorsement by the US Government. We thank the following people for their contributions to this work: the Community Advisory Board members at the HPTN 035 sites; F. E. A. Martinson, Williard Dziyemba, P. Mawindo, and A. Jumbe (UNC Project, Lilongwe, Malawi); Linly Seyama, Fatima Zulu, Jennie Makunganya, Mary Kapusa, and George Kafulafula (Johns Hopkins Project, Blantyre, Malawi); Janet Chime (FHI), Diane Despard (CIDRZ), Donavon Nyimba, and Michael Tembo (Lusaka, Zambia); Z.M. Chirenje, Patricia Primrose Pedzisayi Maramba, Wilfred Runyararo Munetsi, Ezemah Moliba, Emilia James, Angeline Paradzai, Thulani Martha Napata, Joelle Brown, and Nancy Padian (UZ/UCSF, Harare, Zimbabwe); Thoko Makhanya, Makhosi Dlalisa, Lungile Matika, Sicelo Gumede, and Thabisile Mkhize (Durban, South Africa); Sandile Ndwandwe, and Nduduzo Mbatha (Hlabisa, South Africa); Lightness Kaale, Elizabeth Urio, Catherine Kilewo, Esther Mbusa, and Saidi Kapiga (Moshi, Tanzania); Yasmin Shaikh, Mrudula Phadke, Ratnaprabha Birhade, Neelam Joglekar, and Pawan Khatawane (National AIDS Research Institute, Pune, India); Kenneth Cruz, Juan Negron-Ayala, Helen Navaline, and David Metzger (Philadelphia, PA, USA); Laura Johnson, Anne Coletti, Kathleen Hinson, and Vivian McLaurin (FHI, Durham, NC); Cynthia Woodsong (RTI, Durham, NC); and Katherine Shapiro.

Notes

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