Perceived and experienced stigma among people living with HIV: Examining the role of prior stigmatization on reasons for and against future disclosures

ABSTRACT

HIV remains a significant health concern entering the fourth decade of the epidemic [Centers for Disease Control and Prevention. 2014. HIV basics. Retrieved from http://www.cdc.gov/hiv/basics/index.html], and people living with HIV continue to grapple with stigma. This study uses Leary and Schreindorfer's [1998. The stigmatization of HIV and AIDS: Rubbing salt in the wound. In V. J. Derlega & A. P. Barbee (Eds.), HIV and social interaction (pp. 12–29). Thousand Oaks, CA: Sage] conceptualization of stigma to explore prior stigmatization on reasons for and against future disclosures. We interviewed HIV+ individuals (N = 59) and used a combination of deductive and inductive coding to analyze participants’ responses. Deductive codes consisted of four stigma characteristics (pose a threat to others’ health and safety, deviate from group standards, create negative emotional reactions in others, and failure to contribute), experiences of feeling stigmatized due to HIV status (yes or no), and the degree to which HIV stigma was a concern (major, minor, or no concern). Inductive coding identified examples of perceived and experienced stigma and stigma concerns on future disclosure decision-making. Practical implications discuss individual, institutional, and societal stigma-reduction interventions and programs.

KEYWORDS:

• HIV/AIDS
• stigma
• perceived stigma
• experienced stigma
• disclosure
• disclosure decision-making

Disclosure statement

No potential conflict of interest was reported by the authors.

Notes

1. Based on the United Nations AIDS Terminology Guide's (2011) recommendation to avoid confusion between HIV (a virus) and AIDS (a clinical syndrome), the term HIV was used throughout the manuscript. HIV stands for human immunodeficiency virus, the virus that causes AIDS. Having HIV does not mean a person has AIDS. Participants in the present study were HIV+. AIDS stands for Acquired immunodeficiency syndrome, a disease that results in a weak immune system and increases the risk of getting certain infections and cancers (CDC, 2014).

2. A CD4 count is a lab test that measures the number of CD4 cells in a sample of your blood. It is an important indicator of how well an immune system is working. Normal CD4 counts range from 500–1200 cells/mm³ in adults/adolescents. A CD4 count of fewer than 200 cells/mm³ is one of the qualifications for a diagnosis of stage 3 infection (AIDS) (CDC, 2014). Study participants’ CD4 counts ranged from undetectable to 1267 (M = 561, SD = 279), viral load from undetectable to 9730 (M = 555, SD = 1641), suggesting a reasonably healthy sample with some physically distressed participants.

3. Each interviewer received extensive training (minimum two practice interviews with feedback). Consistency was assessed by comparing interview length across interviewers, monitoring adherence to the interview guide by comparing interviewer audio recordings and the order and manner interview questions were asked, and making note of interviewee comments. Three interviewers were White women; one was an African-American man. Based on review of transcripts, we combined data for analysis.

4. This study was conducted in two of 10 largest New Jersey cities for PLWH; in addition, these two cities rank high for percentage of the population below poverty level, suggesting an economically disadvantaged sample.

5. Three undergraduate coders blind to the research questions received training prior to deductive/directed coding. The training sessions included weekly group discussions about the meanings and nuances of the coded variables.