Intricacies and inter-relationships between HIV disclosure and HAART: A qualitative study

Abstract

This study aimed to understand whether and how highly active antiretroviral treatment (HAART) affects views and patterns of disclosure and how disclosure interacts with treatment decisions. One hundred and fifty-two HIV-positive adults (52 MSM, 56 women and 44 IDU men) from four US cities participated in two to three-hour, semi-structured interviews in 1998–99. Results indicate that HAART interacts with and shapes HIV disclosure issues in several ways. Medications may ‘out’ people living with HIV. Thus, in different settings (e.g. work, prisons, drug rehabs and public situations), some try to hide medications or modify dosing schedules, which can contribute to non-adherence, and affect sexual behaviours. Disclosure of HIV and/or HAART may also result in antagonism from others who hold negative attitudes and beliefs about HAART, potentially impeding adherence. Observable side effects of medications can also ‘out’ individuals. Conversely, medications may improve appearance, delaying or impeding disclosure. Some wait until they are on HAART and look ‘well’ before disclosing; some who look healthy as a result of medication deny being HIV-positive. Alternatively, HIV disclosure can lead to support that facilitates initiation of, and adherence to, treatment. HIV disclosure and adherence can shape one another in critical ways. Yet these interactions have been under-studied and need to be further examined. Interventions and studies concerning each of these domains have generally been separate, but need to be integrated, and the importance of relationships between these two areas needs to be recognized.

Acknowledgments

This research was funded by National Institute of Mental Health grants U10-MH57636, U10-MH57631, U10-MH57616 and U10-MH57615; NIMH centre grants P30-MH058107 (Mary Jane Rotheram-Borus, PhD, PI), P30-MH57226 (Jeffrey A. Kelly, PhD, PI), P30-MH43520 (Anke A. Ehrhardt, PhD, PI) and P30-MH062246 (Thomas J. Coates, PhD, PI).

The authors thank the men and women who participated in these interviews: Ellen Stover, PhD, Willo Pequegnat, PhD, Christopher M. Gordon, PhD, and Dianne Rausch, PhD, at NIMH for their support of this research; and Susan Tross, PhD, and Gary Dowsett, PhD, for methodological guidance, and Daniel Fishman and Jennifer Hersh, for editorial assistance.

This project was conducted by the NIMH Healthy Living Trial Group, including site PIs and NIMH staff collaborators: Mary Jane Rotheram-Borus, PhD (UCLA), Jeffrey A. Kelly, PhD (MCW), Anke A. Ehrhardt, PhD (NYSPI/Columbia University), Margaret A. Chesney, PhD (UCSF), and Willo Pequegnat, PhD (NIMH); Co-PIs, Investigators, Collaborating Scientists: Naihua Duan, PhD, Martha Lee, PhD, Marguerita Lightfoot, PhD, Rise B. Goldstein, PhD, MPH, Fen Rhodes, PhD, Robert Weiss, PhD, Lennie Wong, PhD, Tyson Rogers, M.A., Philip Batterham, M.A. (UCLA), Lance S. Weinhardt, PhD, Eric G. Benotsch, PhD, Michael J. Brondino, PhD, Sheryl L. Catz, PhD, Cheryl Gore-Felton, PhD, Steven D. Pinkerton, PhD (MCW), Robert H. Remien, PhD, A. Elizabeth Hirky, PhD, Robert M. Kertzner, M.D., Sheri B. Kirshenbaum, PhD, Lauren E. Kittel, Psy.D., Robert Klitzman, M.D., Bruce Levin, PhD, Susan Tross, PhD (NYSPI/Columbia University), Stephen F. Morin, PhD, Mallory O. Johnson, PhD (UCSF), Don C. Des Jarlais, PhD (Beth Israel Medical Center, New York City), Hannah Wolfe, PhD (St. Luke's Roosevelt Medical Center, New York City); Site Project Coordinators: Daniel Hong, MA (UCLA), Kristin Hackl, MSW, Margaret Peterson, MSW (MCW), Joanne Mickalian, MA (UCSF); and NIMH: Ellen Stover, PhD, Christopher M. Gordon, PhD, Dianne Rausch, PhD.