HIV Positive: Diagnosed Women and Their Sexual and Romantic Relationships

1. HIV Positive: Diagnosed Women and Their Sexual and Romantic Relationships “Project D.E.S.I.R.E.” (Decisions and Expression: Seropositive Intimate Relationship Experiences) Corey Westover New York University

2. Acknowledgements Perry N. Halkitis, Ph.D. Sandra Kupprat and staff of NYU CHIBPS Transcription and coding team Iris House and VIP Community Services Incarnation Children’s Center

3. HIV/AIDS Statistics 19.8 per 100,000 people in the US are infected with HIV. Women are the fastest growing infected population group in the US, comprising up to 26% of new HIV infections in 2005. However, women are… less well studied than men who have sex with men (MSM). slightly less likely than men to receive prescriptions for the most effective treatments for HIV infection. more susceptible to sexually transmitted disease (STD) infection than men. 1992: Women accounted for 14% of adults andadolescents living with HIV/AIDS. 2005: This proportion had grown to 26%. CDC, 2005; World Health Organization, n.d.

4. Race/Ethnicity of Women with HIV/AIDS American Indian/ Alaskan Native <1% Asian/Pacific Islander 1% White 17% Hispanic 14% Black 66% CDC, 2005

5. Emotional Connections • Adult attachment styles influence sexual relationships. • Men and women emphasize different desires and goals for relationships. • Love and trust are common reasons for engaging in unsafe sex. • Serostatus Disclosure • Decisions about disclosure are based on potential reactions. • Results of disclosure can be positive or negative. • Some HIV-positive individuals falsely disclose. Sexual and Romantic Relationships • Contraceptive Use • Condoms act as barriers to intimacy. • Risky sexual behaviors can convey affection, fidelity, romance, passion. • Male-female power imbalances affect contraceptive use. • Nonverbal communication conveys sexual preferences.

6. Rationale Gaps in the literature: HIV/AIDS is now considered a “chronic” disease. Little emphasis on the psychosexual or emotional lives and needs of HIV-positive people. Focus on the MSM population, but these results are not necessarily generalizable to women. The current study: Utilized a qualitative design. Incorporated a biopsychosocial lens. Provided a lifespan view. Considered the compounding effect of being part of another oppressed group.

7. Research Questions The primary objective of the study was to explore the sexual and romantic relationships among women with HIV/AIDS. In particular, the following three questions guided the study: • How does HIV/AIDS influence emotional connections within intimate relationships? • How and when is seropositive status disclosed to sexual partners? • How does HIV/AIDS diagnosis impact contraceptive use?

9. Sample (N=7)

10. Sample (N=7)

11. Profiles Diane is a 39-year-old, heterosexual, African American woman who was diagnosed with HIV as a late teen. She left school in 6th grade upon becoming pregnant and has a history of sexual abuse and rape, homelessness, and drug abuse. Violet is a 20-year-old, heterosexual, African American woman who was diagnosed with HIV 12 years ago after being perinatally infected. She is a junior in college, participates in debate team, and does advocacy work to promote the need for HIV/AIDS education. Kimberly is a 44-year-old, heterosexual, Black/African American woman who was diagnosed with HIV 14 years ago. She left school just before graduating 12th grade and has a good relationship with her family and friends. Robyn is a 67-year-old, heterosexual, Black American woman who was diagnosed with HIV 13 years ago. She is a high school graduate and a retired nurse’s aide, recently lost her partner to AIDS-related complications, and has strong religious beliefs. Phyllis is a 56-year-old, heterosexual, Hispanic woman originally from the Caribbean islands, who was diagnosed with HIV 16 years ago. She left college after her second year and had a very open relationship with her mother, but not with her father. Marie is a 39-year-old, heterosexual, Black woman originally from Trinidad, who was diagnosed with HIV 11 years ago. She graduated with her Bachelor’s in psychology, teaches GED to ex-convicts, and is very physically active.

12. Procedure • Semi-structured qualitative interviews using a life history interview protocol, adapted from Project B2B (Halkitis, 2005). • Questions examined: • Family dynamics • Early sexuality • Recent sexuality • Romantic relationships • Life post-HIV diagnosis • Experiences with adversity and coping • Interviews were transcribed verbatim, verified, and coded usingQSR N5 NUD*IST software (Strauss & Corbin, 1994). • Analyses included within case and across case comparisons.

13. Key Themes

14. How does HIV/AIDS influence emotional connections within women’s intimate relationships?

15. Emotional Connections: Examples LOVE, ROMANCE, & INTIMACY Violet: HIV has affected my intimacy and romance to making it non-existent, um to making it very difficult to find love. Like, me and my best friend was having a conversation the other day, and I’ve come to the realization that I may never fall in love again. Um, and so you know that’s something that I have to accept with me, but um that’s how it does affect me and my life, um, but you know, I have other things… to satisfy me as a person. TRUST & RESPECT Marie: My train of thought was that, well I trust this person, or I know him and I know he’s, he’s a , he’s a clean person… you don’t expect to be, um, uh, dealing with someone who probably was, um, ill… that’s how I would judge the person. I am attracted to him, he attracted to me, we’d go out. We’d have a relationship. And, um, eventually, we would just stop using condoms and I was fine by that, you know, but, um, obviously it was a big mistake. DIFFICULTIES WITHIN THE RELATIONSHIP Marie: He would demand sex, I couldn’t say no. And I didn’t want to do it but I, I can’t really say no because, you know, I’m afraid what he might do… Um, because he did have forcible sex with me on several occasions… And, um we did have a big fight one time where he, um, he grabbed me by my throat and threw me in front of the ‘fridge. And my, my feet wasn’t even touching the ground. You know, he had me lifted, by my, by my neck, you know, and um, so with that experience, if that person want to have sex with you, you can’t really say no.

16. How and when is seropositive status disclosed to women’s sexual partners?

17. Serostatus Disclosure: Examples OTHERS’ REACTIONS Margaret: And it gets overwhelming sometimes- rejection. And I really have never really been rejected but honestly at this time in my life it might come and I wouldn’t know how I would be able to deal with it. That’s my fear. PERSONAL REACTIONS Margaret: After I finished talking to ‘em, and I went in the kitchen and I sat down and I started cryin. My mother said, “Don’t cry,” cause she said, “I think you did a brave job.” FALSE DISCLOSURE Diane: [He] didn’t say a word. Just came on home and laid down with me too. Didn’t say a word. So, I guess that’s how I wound up with it. So I was given it intentionally.

18. How does HIV/AIDS diagnosis impact contraceptive use?

19. Contraceptive Use: Examples SEXUAL EDUCATION Phyllis: [Without sexual education], you feel like you are in the dark. Robyn: She never talked about it, it was always a hush-hush thing. CONTRACEPTIVE USE Diane: No, it wasn’t me, it was him. He did not want to use them. At one point in time, we did try it, and he was uncomfortable with it, and he just tore it off, and it’s been that way ever since. HIV-POSITIVE PREGNANCIES Margaret: So my sister did just what I asked. Put her little jacket on, she put her little hat on, her little shoes on, and wrapped her up in her favorite blanket and she carried her out. And um, the only thing I could do was just sit there. I just sit there and I just cried. Because that was the hardest part- to see that somebody had to carry my baby out.

20. Discussion How do women describe the impact of HIV/AIDS on emotional connections within these relationships? How and when is seropositive status disclosed to sexual partners? How does HIV/AIDS impact contraceptive use? • Previous research has focused on cognitive and social-cognitive implications of HIV; more emphasis is needed on women’s emotions and desires as sexual beings. • As suggested by the biopsychosocial perspective, these women are more than “vectors of HIV transmission.” • Disclosure depends greatly on the closeness and comfort with an individual, trust and feelings of safety, the length of time since diagnosis, and the woman’s age, maturity level, and personal characteristics. • Contraceptive use is a very complex social and sexual practice, with women varying in their abilities to assert themselves and negotiate sexual relationships. • Misconceptions might confound contraceptive use.

21. Conclusions & Implications Findings might help: Development of HIV/AIDS preventative interventions that are in sync with the socioemotional, sexual, and physical needs of HIV-positive women and that treat sex as more than a rational cognitive act Changes in public policy for sexual health education which can empower women to make safer choices Education regarding STD risks and safer sex practices with a recognition that unsafe practices place the HIV-positive person's health at risk as well Education promoting social skills to negotiate gender power dynamics and issues of disclosure Give voice to those who might not always be heard

22. Directions for Future Research Mixed methods Longitudinal Following women as they seroconvert Sample More variety in age More emphasis on emergent adult women who are developing their sexuality and are at risk for HIV Access women through sources other than HIV/AIDS service organizations