Managing identity impacts associated with disclosure of HIV status: a qualitative investigation

Abstract

Disclosure of HIV status to potential and current sex partners by HIV-positive people (HIVPP) is a complex issue that has received a significant amount of attention. Research has found that disclosure depends upon the evaluation by HIVPP of potential benefits and risks, especially of the risks stemming from the profound social stigma of HIV and AIDS. Drawing on concepts from Goffman's classic stigma theory and Anderson's more recently developed cultural-identity theory of drug abuse, we analyzed data from in-depth, post-intervention qualitative interviews with 116 heterosexually active, HIV-positive injection drug users enrolled in a randomized trial of a behavioral intervention to prevent HIV transmission. We explored how disclosure experiences lead to “identity impacts” defined as: (1) identity challenges (i.e. interactions that challenge an individual's self-concept as a “normal” or non-deviant individual); and (2) identity transformations (i.e. processes whereby an individual comes to embrace a new identity and reject behaviors and values of an old one, resulting in the conscious adoption of a social and/or public identity as an HIV-positive individual). Participants engaged in several strategies to manage the identity impacts associated with disclosure. Implications of these findings for research and prevention programming are discussed.

Keywords:

• HIV disclosure
• injection drug use
• social identity
• HIV prevention

Acknowledgements

This research was supported by a National Institute on Drug Abuse career development award (K01 DA020774) to Dr. Victoria Frye. Thanks are also due to Robert Kaplan, PhD, of Hunter College for his editorial assistance with the final draft of the paper and the following people for their contributions to this research:

Baltimore – Susan Sherman, Roeina Marvin, Joanne Jenkins, Donny Gann, Tonya Johnson. Miami – Clyde McCoy, Rob Malow, Wei Zhao, Lauren Gooden, Sam Comerford, Virginia Locascio, Curtis Delford, Laurel Hall, Henry Boza, Cheryl Riles. New York – George Fesser, Carol Gerran, Laxmi Modali, Diane Thornton San Francisco – Caryn Pelegrino, Barbara Garcia, Jeff Moore, Erin Rowley, Debra Allen, Dinah Iglesia-Usog, Gilda Mendez, Paula Lum, Greg Austin. Centers for Disease Control and Prevention – Gladys Ibanez, Hae-Young Kim, Toni McWhorter, Jan Moore, Lynn Paxton, John Williamson Centers for Disease Control and Prevention (Laboratory) – Lee Lam, Jeanne Urban, Stephen Soroka, Zilma Rey, Astrid Ortiz, Sheila Bashirian, Marjorie Hubbard, Karen Tao, Bharat Parekh, Thomas Spira.

DISCLAIMER: The findings and conclusions in this report are those of the authors and do not necessarily represent the views of the Centers for Disease Control and Prevention.