In Their Own Words: Recent Seroconversions Among Gay/Bisexual Men Nicholas Alvarado, Jason Euren, Olga Grinstead, Ellen Goldstein and William J. Woods CAPS

Acknowledgments We would like to acknowledge and thank our study participants for sharing their stories with us This study was funded by the Universitywide AIDS Research Program (UARP), University of California, Office of the President

Workshop Schedule Study Overview Seroconversion Narratives and Quotes Large Group Discussion Small Group Discussion Report Back and Closure

Background and Significance Innovative approaches are needed to address continued new HIV infections among gay and bisexual men Narrative therapy: exploration and modification of people’s stories can help them change their behavior What actually happened is less important than the story each individual chooses to tell and how he tells his story

Research Questions What are the common/recurrent themes in narratives of recently seroconverted men? Is there a relationship between men’s understanding of how they became HIV+ and their current prevention practices? How can these findings be used to improve the effectiveness of counseling and other interventions?

SNAP: Seroconversion Narratives for AIDS Prevention Qualitative interview study of 28 recently seroconverted gay/bisexual men Pilot and Feasibility Study Eligibility Criteria –Over 18 years of age –Able to communicate in English –Became infected with HIV in the past 2 years

Recruitment Methods There were three sources of participants: –Flyers in AIDS Service Organizations (ASOs) –Referrals from ASO clinicians and staff –Word of mouth from other participants Recruitment was directed to increase the diversity of the sample All potential participants had telephone screening prior to scheduling appointment

Interview Guide Seroconversion Narrative –Tell me the story about how it happened that you were infected with HIV –Probes regarding life circumstances at that time Testing Narrative –When did you first test positive for HIV?

Interview Guide What does you life look like now since you became infected with HIV? Current Prevention Ideas/Practices –How do you express yourself sexually now? –Have you changed the ways you use drugs or alcohol? –Prevention messages to HIV- and HIV+ men

Study Sample 87 men were screened for the study –72 were recruited from ASOs and 15 by word of mouth 29 out of 87 men were eligible for the study 28 out of 29 eligible men participated in the study

Study Sample Average age was 34 years, Range Ethnicity –11 (39%) Caucasian –10 (36%) African American –4 (14%) Latino –2 (7%) Native American –1 (4%) Asian/PI

Study Sample Time since seroconversion averaged 2 years Range 7 months - 6 years 60% had been infected less than 2 years, 82% had been infected less than 3 years

Study Limitations Pilot and Feasibility Study Recruitment was from ASOs - men already in touch with services Recruitment from San Francisco agencies

Data Analysis Plan Themes Seroconversion Narrative Types Prevention Strategies as HIV+ man Relationship between Narrative Type and Prevention Strategies as HIV+ man Implications for interventions and research

Qualitative Data Analysis Interviews were taped and transcribed Investigators read all of the interviews, discussed each interview and noted themes Interviewers independently rated themes to select most prevalent

Overall Themes Abuse/Sexual Violence Assumptions Disclosure/Sexual Communication Drug/Alcohol Use Internet Loss Partner Choice Prevention Strategies (HIV+ and HIV-) Resilience/Coping Responsibility Travel/Displacement Trust

In Their Own Words: Themes Drug and Alcohol Use Loss Disclosure and Sexual Communication Assumptions Prevention and Responsibility Resilience/Coping

NARRATIVE “Then he wanted to do it without a condom…and he said he would give me fifty dollars more” (35 year old African American man)

NARRATIVE “I was, I think, 16 at the time so I kind of like went along with him or something I was like whatever” (19 year old African American man)

NARRATIVE “That was actually the day that I became positive, and then come to find out he’s messing with this other guy, and you know the chain started” (33 year old African American man)

DRUG and ALCOHOL USE “I would normally use condoms but when I was high on cocaine or drunk, I didn’t” (34 year old Latino man)

DRUG and ALCOHOL USE “In fact I wouldn’t even shoot up if I couldn’t make it while I was doing it and then immediately follow with having sex” (31 year Caucasian man)

DRUG and ALCOHOL USE “…drugs and sex were my way of getting off the streets…of feeling needed and desired and popular” (31 year old Caucasian man)

DRUG and ALCOHOL USE “So I was completely a novice at it…I had no idea of the effects except it made me feel very sexual” (23 year old Native American/Caucasian man)

LOSS “Before she passed, I always had it in control. But this is like too many things came at me really at one time” (43 year old African American man)

LOSS “…I didn’t really care what was happening to me and I just engaged in risky behavior” (33 year old API man)

LOSS “My mom passed…I just started doing drugs and hanging out and drinking and not giving a damn” (40 year old African American man)

DISCLOSURE AND SEXUAL COMMUNICATION “I have to say that I never say I am positive - never” (34 year old Latino/Caucasian man)

DISCLOSURE AND SEXUAL COMMUNICATION “When people asked me my status I would say: the last time I tested I was negative” (30 year old Caucasian man)

DISCLOSURE AND SEXUAL COMMUNICATION “…in the future relationships I have, there’s gonna be some period of getting to know that person and there’s gonna be disclosure” (25 year old Caucasian man)

DISCLOSURE AND SEXUAL COMMUNICATION “I can be honest with myself and I can know that I was doing the right thing by being honest with someone else” (19 year old African American man)

DISCLOSURE AND SEXUAL COMMUNICATION “But I think at least they’re saying ‘we’re having unprotected sex’ in a sort of public way” (30 year old Caucasian man)

DISCLOSURE AND SEXUAL COMMUNICATION “…don’t really want to tell too many people that I’m positive, therefore I don’t have sex” (31 year old Latino man)

ASSUMPTIONS “…I found out that he thought that if I was being fucked without a condom, then I was probably positive” (37 year old Caucasian man)

ASSUMPTIONS “…there’s an assumption that a lot of people make when you look at their ads on the Internet or you talk to them” (37 year old Caucasian man)

PREVENTION AND RESPONSIBILITY “I don’t want to date HIV negative people because I’m not a condom wearer” (37 year old Caucasian man)

PREVENTION AND RESPONSIBILITY “I practice safer sex because it’s the only way to really go at it” (43 year old African American man)

PREVENTION AND RESPONSIBILITY “… we kind of assumed that he was already at risk - at high risk” (19 year old African American man)

PREVENTION AND RESPONSIBILITY “… I also recognize that it takes two people to not make the decisions that we didn’t make or however that works” (25 year old Caucasian man)

PREVENTION AND RESPONSIBILITY “I just will not be a person that spreads this” (44 year old Caucasian man)

RESILIENCE/COPING “I was telling him what I found out and that I was kinda scared and worried” (25 year old Caucasian man)

RESILIENCE/COPING “The infrastructure and everything was just gone. And so I am in the process of rebuilding” (35 year old African American man)

RESILIENCE/COPING “I ain’t going to cry no more over this” (40 year old African American man)

RESILIENCE/COPING “Having HIV is just another obstacle in life” (40 year old African American man)

RESILIENCE/COPING “…It gets better and there are still good people out here and there are still services available and you just gotta keep pluggin’ away” (36 year old African American man)

RESILIENCE/COPING “I know I can’t save the world, but if I can help one or two then I think I’ve done my job” (33 year old African American man)

RESILIENCE/COPING “It’s not just about not contracting HIV” (33 year old African American man)

Discussion Questions Are these themes/stories familiar from what are you hearing in your programs and research? What are the implications for prevention, intervention and research?

Contact Information Olga Grinstead, Ph.D., MPH UCSF-CAPS (415)