HIV Diagnosis Disclosure: Stigma Management and Stigma Resistance

Abstract

This article reports diagnosis disclosure decision comments arising serendipitously in five focus group discussions with 34 HIV-infected New Yorkers over age 50. Three overarching disclosure themes demonstrate the complexity of diagnosis disclosure decision-making: (a) hiding or selectively disclosing, or stigma management; (b) partial disclosure because of the perception of partial control of the information; and (c) widespread or complete voluntary diagnosis disclosure, representing stigma resistance. Social workers and other human services practitioners should remember the diversity in the HIV population, the aging population, and the HIV-positive aging population. Experiences of HIV stigma and choices about diagnosis disclosure and stigma management or resistance are individual, reciprocal, and dynamic.

KEYWORDS:

• HIV
• AIDS
• older adults
• disclosure
• stigma
• aging

This report is dedicated to those New Yorkers over age 50, living with HIV, who shared their experiences and perceptions with us. This study was funded by the AIDS Community Research Initiative of America (ACRIA) and Fordham University's Graduate School of Social Service Faculty Development Grant. Preliminary data from this study were presented at the Second International Congress of Qualitative Inquiry in Urbana, IL in May 2006; at the 18th Annual National Conference on Social Work and HIV in Miami, FL in May 2006; and at the annual meeting of the Gerontological Society of America in San Francisco, CA in November 2007. Thanks to the Fordham Graduate School of Social Service Faculty Writing Group for encouragement and feedback on the first draft and to Dr. Charles Emlet at the University of Washington, Tacoma, for consultation on the final draft.

Notes

¹Age 50 is often used in HIV research and advocacy because when CDC began reporting incidence and prevalence of AIDS in 1982, age was reported as: under 25, 25 to 44, 44 to 49, and over 49. Those over 50 were at first not reported, and then reported as a monolithic group. In addition, the United Nations AIDS Program did not report or acknowledge HIV over age 50 until 2006.

²All names are pseudonyms.

³Ethnic identification and sexual orientation are self-reported. Years of diagnosis represent numbers self-reported at the time of the focus groups. All information is taken from forms completed before focus groups began.