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ChicagoBoston 1 Bianca Aponte, Research Associate Emilia Dunham, Senior Research Associate Nelisa Rash, Research Associate Jackie White, Project Manager Jane Hereth, Clinical Research Coordinator Lark Mulligan, Research Associate Ebonii Warren-Watts, Research Associate
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“Sexual health is a state of physical, emotional, mental and social well-being in relation to sexuality; it is not merely the absence of disease, dysfunction or infirmity. Sexual health requires a positive and respectful approach to sexuality and sexual relationships, as well as the possibility of having pleasurable and safe sexual experiences, free of coercion, discrimination and violence.” --World Health Organization, 2002 2
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Transgender women have HIV prevalence rates as high as or higher than other high-risk populations in the U.S. Meta-analysis of 29 studies >25% laboratory-confirmed HIV seropositive Racial/Ethnic disparities Black/African American trans women > 50% laboratory-confirmed HIV seroprevalence High rates of unrecognized HIV infection (>10%), with the largest percentage among young transgender women ages 29 and younger Herbst et al., 2008; Schulden et al., 2008 3
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According to the CDC, there are no theoretically-driven, evidence-based HIV prevention interventions for transgender communities Need for comprehensive HIV prevention programs to meet the unique needs of young trans women 4
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CDC-funded pilot study 2008-2009 in Chicago (PI: Robert Garafalo, MD) Community-based participatory research principles Young trans-identified staff led the writing of intervention Based in empowerment theory Holistic, theoretically-driven curriculum grounded in the lived realities many young trans women face Focuses on day-to-day issues facing young trans women that can complicate comprehensive HIV prevention efforts “With” not “on” trans communities 5
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Enrollment and retention was possible 51 participants enrolled in 6 months Retention and session attendance were high 84% of participants were retained over the study The participants liked it! More than 90% of participants: ▪ Would recommend to other young trans women ▪ Better understood the issues surrounding unsafe sex ▪ Felt better about their futures 6 Garafalo et al., 2012
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Following the intervention (3-month follow-up), participants reported reduced sexual risk Decreased… ▪ # of times participants had receptive anal sex with casual partners ▪ #of main partners LifeSkills was acceptable and feasible Warrants testing in a larger efficacy trial 7
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To test whether the LifeSkills curriculum works to reduce HIV risk for young trans women ages 16-24 at risk for HIV acquisition or transmission Two U.S. cities: Boston and Chicago Enroll 375 young trans women 5-year research grant – R01 National Institute of Mental Health – randomized controlled trial 8 Investigators: M. Mimiaga S. Reisner Investigators: R. Garafalo L. Kuhns
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Enroll 375 young at-risk trans women ages 16-24 Randomize participants (like the flip of a coin) Three “arms” (e.g., different types of programs): Program 1: Standard-of-care program (N=150) Program 2: 6-session group-based LifeSkills intervention (N=150) Program 3: 6-session group-based general health program (N=75) All three programs receive HIV and STI (Chlamydia and gonorrhea) testing and pre-post test risk reduction counseling 4 assessments: baseline, 4, 8, 12 months post-intervention Primary outcome: Number of unprotected anal or vaginal sex acts in the past 4 months 10
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First Visit Lasts 2 hours ($25) Consent/Assent Fill out Questionnaire STI/HIV Testing Second Visit – Randomization (flip of a coin) Lasts 20 min or 2 hours Program 1: Control Lasts 20 minutes ($10) Program 2: “LifeSkills” 6 group sessions, 2 hours each (2 sessions x 3 weeks) ($10 per session; $10 for completing 2 sessions in a row) Program 3: General Health 6 group sessions, 2 hours each (2 sessions x 3 weeks) ($10 per session; $10 for completing 2 sessions in a row) 4 Month Visit Lasts 2 hours ($50) Fill out Questionnaire STI/HIV Testing 8 Month Visit Lasts 2 hours ($50) Fill out Questionnaire 12 Month Visit Lasts 2 hours ($50) Fill out Questionnaire STI/HIV Testing Participants in Program 1 and 3 Offered LifeSkills Sessions N=150 N=150 N=75 11
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12 Jane HerethAmy Johnson Lark Mulligan Ebonii Warren-Watts Robert Garofalo Lisa Kuhns
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Matthew Mimiaga Bianca Aponte Nelisa Rash Sari Reisner Emilia Dunham Jackie White 13 Mick Rehrig
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Who may be eligible? Age: 16 to 24 years-old Trans woman/ on the MTF spectrum Sexually active Any HIV serostatus First groups begin June 12 th ! 14 Begins March 8, 2012
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Community events Social networks Word-of-mouth Referrals Organizations and programs Peer groups Healthcare providers Online and website Street outreach 15 Begins March 8, 2012
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Volunteering/giving back to youth orgs like Broadway Youth Center and BAGLY Community Referral Program Existing Networks Facebook! Throwing events! 16
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Talk to people about the study Network and make referrals Study materials Hand them out, make visible, give to colleagues, etc Promote online Referrals 17 Begins March 8, 2012
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18 SessionTitle 1Pride 2Communication and Respect 3Skill Building around Navigating Employment, Housing and Healthcare 4Knowledge and Self- Protection 5Partner Negotiation 6Tying it all Together
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These are programs not studies for trans women, but may have research component Programs provide direct service and often have more flexibility, but research is often a good step toward creating programs When LifeSkills can’t help, we refer to partner organizations 21
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Research studies can affect social change Research studies can affect community resources and programs by showing need for more funding They can help contribute to public awareness They can add to scientific knowledge They can affect law and policy But we don’t have a lot of them!
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Fact sheets for policy makers Mass. drew state data to write their own, which were used to strengthen support for the Trans Rights Bill. (Another study showed 76% MA residents in favor of the bill.) Topic specific generated for gov’t agencies (SAMHSA) Allows for adding to the literature on trans health Helps policy advocacy: commitment to data collection (HHS), trans veterans health rights, Office of Personnel Management
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Institute of Medicine (IOM): The Health of Lesbian, Gay, Bisexual, and Transgender People: Building a Foundation for Better Understanding City non-discrimination bills (SF, Boston) WPATH SOC Healthy People 2020
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26 www.ProjectLifeSkills.org
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Chicago Jane Hereth: JHereth@luriechildrens.org JHereth@luriechildrens.org Lark Mulligan: LMulligan@luriechildrens.org LMulligan@luriechildrens.org Ebonii Warren-Watts: EWatts@luriechildrens.org EWatts@luriechildrens.org Boston Bianca Aponte: baponte@fenwayhealth.org baponte@fenwayhealth.org Emilia Dunham: edunham@fenwayhealth.org edunham@fenwayhealth.org Nelisa Rash: nrash@fenwayhealth.org nrash@fenwayhealth.org Jackie White: jwhite@fenwayhealth.org jwhite@fenwayhealth.org 27
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Children's Memorial Hospital 2300 Children's Plaza Chicago, IL 60614 Call or Text: 773.245.3755 (773.24LFSKL) Email: lifeskills@childrensmemorial.orglifeskills@childrensmemorial.org Facebook: https://www.facebook.com/missylifeskillshttps://www.facebook.com/missylifeskills Fenway Health 1340 Boylston Street Boston, MA 02215 Call or Text: 617.299.9013 Email: lifeskills@fenwayhealth.orglifeskills@fenwayhealth.org Facebook: https://www.facebook.com/lifeskillsbostonhttps://www.facebook.com/lifeskillsboston 28
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