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What Is the Role of Counseling and Testing in HIV Prevention?

why is C&T important?

HIV counseling and testing (C&T) is an important part of a continuum of HIV prevention and treatment services. C&T is one of the main times when a comprehensive individual risk assessment is taken, making it the best opportunity for accurate referrals to more intensive services. C&T is also one of the primary entry points into prevention and other services. C&T uses short, client-centered counseling that can be effective in increasing condom use and preventing sexually transmitted diseases (STDs).¹ Knowing one’s HIV status, whether HIV- or HIV+, is key to preventing the spread of HIV and accessing counseling and medical care. It is estimated that one-fourth of all HIV+ persons in the US do not know they’re infected.² A survey of young men who have sex with men (MSM), found that 14% of young Black MSM were HIV+. Among those, 93% were unaware of their infection, and 71% reported it was unlikely they were HIV+.³ Recently, the Centers for Disease Control and Prevention (CDC) announced an initiative aimed at expanding C&T in the US.⁴ Their Strategic Plan for 2005 strives to decrease by 50% the number of people who don’t know their HIV status.⁵ If this goal is met by 2010, an estimated 130,000 new HIV infections may be prevented, saving over $18 billion.⁶

how is C&T done?

C&T has three distinct components: risk assessment and counseling before the blood or oral sample is taken, testing of the sample, and counseling and referral with the test results.⁷ C&T can be confidential-a person’s name is recorded with the test results-or anonymous-no name is recorded with the test. Publicly funded HIV C&T takes place in testing centers, community health clinics, community-based organizations, outreach programs, mobile vans, STD and family planning clinics and local health departments, among other venues. Although public health workers are trained in C&T procedures, most HIV testing in the US occurs in private doctors’ offices. Many people prefer being tested as part of a routine check-up, instead of public health sites. However, testing in private venues does not offer anonymity, and patients who get tested as part of routine medical care may not receive adequate counseling or referrals.⁸ Other venues also test for HIV, such as emergency rooms, jails/prisons, military recruitment sites and Job Corps. HIV testing in the US is mandatory to get some insurance and medical benefits, apply for some jobs, join the military, give blood or enter the US as an immigrant. HIV testing is compulsory for federal prison inmates and sex offenders in some states.

what about rapid testing?

The standard testing method for the past 20 years has been a needle blood draw. In the past 10 years, a mouth swab (OraSure) that tests cells from inside the cheek has also been available. Results are sent to a lab for the ELISA test and a Western Blot to confirm an initially positive result, with an average wait of 1-2 weeks between sample collection and the provision of results. With this method, many persons don’t return for their test results, and nationally 31% of persons who test HIV+ don’t return to find out their results.⁴ Rapid testing is now available with a finger stick (OraQuick). With this method, results are known in 20 minutes, eliminating the need for a return visit for results. However, if a client’s tests is reactive, he receives a preliminary positive result. A second blood test (needle draw or OraSure) is required to confirm the result with a standard Western Blot. Final confirmation still takes 1-2 weeks. National data indicate that with rapid testing, 95% of clients who received a preliminary positive result returned for their confirmatory results.⁹ Rapid testing will change the way C&T is conducted, although clients can still opt to get their results later. Because the client needs to wait for 20 minutes for the results, the counselor takes the blood early in the session and has a “captive audience” for risk assessment and counseling. Test counselors can conduct the blood test themselves, or a separate staff person can do the finger stick and read results. Counseling with rapid testing can be more intense and client-focused due to the immediacy of getting results. It is hoped that rapid testing will dramatically increase the number of persons who know their results.

what makes good C&T?

Good C&T depends on counselors who are properly trained and have enough experience. Counselors must protect the confidentiality of client information, obtain informed consent before testing and provide effective counseling services and appropriate referrals. Counselors should establish relationships with key service agencies to make sure the referrals they give clients reflect their needs, priorities, culture, age, sexual orientation and language. C&T counselors should be evaluated regularly to assure quality and be provided with support and ongoing training.⁷ With rapid testing, counselors need different training as they can be both the counselor and the lab. Rapid testing requires stable temperatures, adequate lighting, and careful attention to detail. Also, rapid testing is not rapid counseling. Counselors need to work closely with clients to develop a reasonable risk reduction step and to make sure their clients are actually ready to receive the test results. It is also important to obtain a second blood sample for confirmation if a client tests positive.¹⁰

what’s being done?

The Department of Public Health (DPH) in Florida made a deliberate effort to improve their C&T services and increase the number of people who know they are HIV+. State funded testing sites targeted venues with high-risk persons, including CBOs, prisons/jails and outreach settings. They also began using OraSure for testing in the field. In 2002, the DPH reported a 2% seropositive rate for blood draws and 3.2% for OraSure. In jails they found a 3.6% seropositive rate. They also used partner counseling and referral services (PCRS) and in 2002, 80% of HIV+ people gave names of partners, 64% of partners were located and counseled, and 13% of partners who tested were HIV+.¹¹ In Minneapolis, MN, rapid testing was offered at a variety of agencies serving primarily African American clients. Venues included drug treatment programs, homeless shelters, teen clinics, sex offender groups and halfway houses. Almost all (99.7%) of clients received their test results and counseling, and 95% reported they would rather have a finger stick than a blood draw.¹² Wisconsin’s AIDS/HIV Program wanted to increase the number of high-risk persons accessing testing. In the early 90s, tests jumped from 6000 per year to between 20,000-30,000. The number of high-risk persons tested, however, remained the same while seroprevalence rates dropped from 3.5% to 0.5%. In the late 90s, the program shifted its philosophy from one of public education to case finding. Publicly funded sites were reduced from 126 to 55 serving the greatest percentage of high-risk persons and persons of color. In one year, the seroprevalence rate improved to .75%, the number of low-risk persons tested decreased 42%, high-risk persons tested increased 6%, and testing among persons of color improved 18%.¹³

what is the future of C&T?

As rapid testing becomes more widely used, it is hoped that the number of people not returning for their test results will decrease. Rapid testing can allow for more targeted outreach to communities and persons at risk, as C&T occurs in venues that are more accessible and acceptable. Rapid testing should be implemented carefully to allow time for agencies to gain experience and clients to understand the new testing process. Greater efforts may be necessary to refer clients to effective services. Behavior change is a slow and difficult process, and many persons make changes incrementally. Linkages to other services and follow-up with clients may substantially increase the impact of the initial counseling. While training and quality assurance has traditionally centered on counseling in C&T, referrals may be the weakest part and need most improvement. Simply increasing the number of persons who know they are HIV+ will not slow the HIV epidemic sufficiently. As more persons in the US discover their HIV status, it is crucial to ensure that more prevention, social and treatment services are available both to HIV+ and HIV- persons. In addition to primary HIV prevention interventions, these should include access to quality drug and alcohol treatment, housing and employment services, STD testing and treatment, syringe exchange programs, quality medical care and adherence support to insure effective use of AIDS medications. Prepared by Steven R. Truax, PhD*, Pamela DeCarlo** *California State Office of AIDS, **CAPS

Says who?

1. Kamb ML, Fishbein M, Douglas JM,et al. Efficacy of risk-reduction counseling to prevent human immunodeficiency virus and sexually transmitted diseases. Journal of the American Medical Association. 1998;280:1161-1167. 2. Fleming P, Byers RH, Sweeney PA, et al. HIV prevalence in the United States, 2000. Presented at the 9th Conference on Retroviruses and Opportunistic Infections, Seattle, WA; February 24-28, 2002. 3. Centers for Disease Control and Prevention. Unrecognized HIV infection, risk behaviors and perceptions of risk among young black men who have sex with men – six US cities, 1994-1998. Morbidity and Mortality Weekly Reports. 2002;33:733-736. 4. Centers for Disease Control and Prevention. Advancing HIV Prevention: New Strategies for a Changing Epidemic – US, 2003. Morbidity and Mortality Weekly reports. 2003:52;329-332. https://pubmed.ncbi.nlm.nih.gov/12733863/  5. Centers for Disease Control and Prevention. HIV Prevention Strategic Plan Through 2005. www.cdc.gov/hiv/partners/ psp.htm 6. Holtgrave DR, Pinkerton SD. Economic implications of failure to reduce incident HIV infections by 50% by 2005 in the United States. Journal of Acquired Immune Deficiency Syndromes. 2003;33:171-174. 7. Centers for Disease Control and Prevention. Revised Guidelines for HIV Counseling, Testing, and Referral. Morbidity and Mortality Weekly Reports. 2001;50. 8. Haidet P, Stone DA, Taylor WC, et al. When risk is low: primary care physicians’ counseling about HIV prevention. Patient Education and Counseling. 2002;46:21-29. 9. Kassler WJ, Dillon BA, Haley C, et al. On-site, rapid HIV testing with same-day results and counseling. AIDS. 1997;11:1045-1051. 10. Fournier J, Morris P. Speed bumps and roadblocks on the road to rapid testing: a look at the integration of HIV rapid testing in an agency and community. Presented at the US Conference on AIDS, New Orleans, LA, 2003. 11. Liberti T. Florida’s HIV counseling, testing and referral program. Presented at the US Conference on AIDS, New Orleans, LA, 2003. 12. Keenan PA. HIV outreach in the African American community using OraQuick rapid testing. Presented at the National HIV Prevention Conference, Atlanta, GA. 2003. 13. Stodola J. Restructuring Wisconsin’s HIV CTR program: targeting CTR services. Presented at the US Conference on AIDS, New Orleans, LA, 2003.

January 2004. Fact Sheet #3ER Special thanks to the following reviewers of this Fact Sheet: Jena Adams, Barbara Adler, Chris Aldridge, Teri Dowling, Barbara Gerbert, Paul Haidet, Sydney Harvey, Willi McFarland, Patrick Keenan, Kathryn Phillips, Jim Stodola, Brenda Storey, Ed Wolf.

Reproduction of this text is encouraged; however, copies may not be sold, and the Center for AIDS Prevention Studies at the University of California San Franciso should be cited as the source of this information. For additional copies of this and other HIV Prevention Fact Sheets, please call the National Prevention Information Network at 800/458-5231. Comments and questions about this Fact Sheet may be e-mailed to [email protected]. © January 2004, University of California

What are the HIV Prevention Needs of Young Men Who Have Sex with Men?

revised 4/01

Are young MSM at risk for HIV?

Yes. Over half of all the reported HIV and AIDS cases among males aged 13-24 in the US were due to male-male sexual contact.¹ Various studies found that 26% to 50% of young men who have sex with men (MSM) report recent unprotected anal intercourse, and much of this unprotected sex occurred with a partner of unknown or different HIV status.^2-4 Rates of sexual risk-taking among young MSM are also increasing.⁵ The term young MSM includes men who self-identify as gay or bisexual, as well as non-gay/bi-identified MSM under 30 years old.⁶ A large number of urban young MSM are already infected with HIV. A study of 15- to 22-year-old young MSM in seven cities (Baltimore, MD; Dallas, TX; Los Angeles, CA; Miami, FL; New York, NY; San Francisco Bay Area, CA and Seattle, WA) showed a high overall HIV prevalance: 7%, ranging from 2% -12%. Moreover, 82% of the HIV+ men had no idea they were HIV+ before this testing. Young MSM of color, especially African American men, are disproportionately impacted. In the multi-city study, 14% of the African Americans tested HIV+, compared to 13% among mixed race men, 7% among Hispanics, 3% among Asians and 3% among whites.⁶

Why do young MSM take risks?

Unfortunately, there are no simple answers to this question. The explanations for unsafe sex are complex and multi-faceted.^3,7 Adolescence and young adulthood are often characterized by experimentation and exploration of sexuality and drug using. While most young MSM will engage in some HIV risk behaviors at some point in their lives, only a small percentage are consistent risk takers. Many young MSM struggle with individual, interpersonal and societal stressors that may interfere with their ability to protect themselves.⁸ For some young MSM, individual factors can lead to unsafe sex, such as: feeling invulnerable to HIV; having high levels of optimism about HIV antiviral medications; perceiving that unsafe sex is more pleasurable than safer sex; being depressed or sad; having conflicting allegiance with either their racial or sexual identity; and using alcohol or other drugs (e.g. speed/crystal, poppers).⁸ Protecting one’s health is not necessarily a young MSM’s top concern. Interpersonal motivations may be more pressingwanting to fit in, to find companionship and intimacy. However, interpersonal issues can also contribute to unsafe sex, such as finding it difficult to communicate or negotiate safer sex with a sexual partner. Young MSM who are in a relationship are more likely to have unsafe sex than single young MSM.⁴ Societal factors may also influence the risk-taking of young MSM. Many young MSM find themselves isolated or rejected by traditional sources of support like family, school, or religious community.⁹ Homophobia, racism and poverty also place young MSM at risk. Some young MSM, especially those living on the street, are struggling with daily needs like avoiding violence, finding a place to live, or obtaining food. These pressing needs may overshadow the concern for safer sex and injection practices. Young MSM have few public places to meet each other. Gay bars and public cruising areas are some of the more visible and accessible places, offering anonymity for young men exploring their sexual identity. These venues are also associated with high levels of risk-taking. They are highly sex-charged and the bar scene’s emphasis on alcohol sets the stage for engaging in sex while intoxicated. This is consistently found to contribute to unsafe sex.¹⁰ Little is known about the Internet’s role in the lives of young MSM, including how young MSM use the Internet to obtain social support, make new friends, find romantic partners, and/or cruise for sex.

What’s being done?

The Mpowerment Project is a multilevel, sex- and gay-positive, peer-based intervention in which young men take charge. Because HIV may not be particularly compelling for many young MSM, the project focuses on young MSM’s social concerns. The young men plan and coordinate activities to create a stronger and healthier community for themselves in which safer sex becomes the mutually accepted norm. Participants in the Project have reduced rates of unprotected anal intercourse with casual partners and boyfriends. Mpowerment, proven effective as an HIV prevention intervention, provides CBOs with training and a manual for replication.¹¹ The COLOURS Organization in Philadelphia, PA targets young MSM of color with support groups, peer educator training and individual case management. They do street outreach at sex clubs and bars frequented by MSM of color, providing condoms and counseling to young MSM who partner with older men. They also promote gay-friendly drug and alcohol treatment services for young MSM.¹² The American Psychological Association has implemented the Healthy Schools Project for Lesbian and Gay Students. The Project trains school psychologists, counselors, nurses and social workers to work effectively with gay, lesbian and bisexual students. The goal is to make schools a friendlier environment for these students and make HIV prevention education more relevant to them.¹³ “Chico Chats,” a program of the STOP AIDS Project in San Francisco, CA, consists of a one-month intensive series of workshops. Participants get to know each other while engaging in facilitated conversations about body image, relationships and identity and how these issues relate to HIV. Learning community organizing and mobilization techniques is a key component of these workshops as well. Participants formed an activist group called ¡Ya Basta! (Enough Already) and designed a video and workshop examining the issues of sexual silence and coming out in Latino families. The video is being shown throughout Latino communities in San Francisco.¹⁴

What else needs to happen?

Effective programs for young MSM must address the context of their lives and the individual, interpersonal and societal factors that put them at risk. Comprehensive health and sexuality education must target both those who identify as gay or bisexual and those who do not. Unfortunately, many school-based programs focus on reproduction or abstinence until marriage, further marginalizing young MSM. There is an urgent need to create prevention and wellness programs specifically for young MSM of color. Existing programs for older MSM of color should also be accessible to young MSM. These programs should address issues of sexuality, gay identity, culture, race/ethnicity, racism, homophobia, poverty and violence. Programs must also consider the HIV prevention needs of both HIV positive and HIV negative young MSM. Special attention is necessary to reach marginalized young MSM, such as those who are homeless, engaged in commercial sex work or involved with the criminal justice system. These young men may not identify as gay or bisexual, and may have immediate needs for food and shelter to address. Programs are needed that foster support for young MSM and involve them directly in planning and implementation. Support might encompass creating safe places for young MSM to socialize and access services, developing school-based sexuality and gay-awareness programs and helping young MSM advocate for greater acceptance by schools, families, religious communities, the gay community at large and communities of color.¹⁵ Societal homophobia may impede implemention of prevention programs for young MSM and may discourage young MSM from accessing prevention services.¹⁶ Political concerns must not be allowed to interfere with HIV prevention services for young MSM. Targeting young MSM with HIV prevention messages and services is an appropriate response to a grave public health threat. Unless action is taken quickly, we will lose many young men to HIV.

Says who?

1. Centers for Disease Control and Prevention. HIV/AIDS Surveillance Report . 2000;12.
2. Molitor F, Facer M, Ruiz JD. Safer sex communication and unsafe sexual behavior among young men who have sex with men in California. Archives of Sexual Behavior. 1999;28:335-343.
3. Kegeles SM, Hays RB, Pollack LM, et al. Mobilizing young gay and bisexual men for HIV prevention: a two-community study . AIDS. 1999;12:1753-1762.
4. Hays RB, Kegeles SM, Coates TJ. Unprotected sex and HIV risk-taking among young gay men within boyfriend relationships . AIDS Education and Prevention. 1997;9:314-329.
5. Ekstrand ML, Stall RD, Paul JP et al. Gay men report high rates of unprotected anal sex with partners of unknown or discordant HIV status . AIDS. 1999;13:1525-1533.
6. Valleroy LA, MacKellar DA, Karon JM et al. HIV prevalence and associated risks in young men who have sex with men . Young Men’s Survey Study Group. Journal of the American Medical Association. 2000;284:198-204.
7. Strathdee SA, Hogg RS, Martindale SL et al. Determinants of sexual risk-taking among young HIV-negative gay and bisexual men . Journal of Acquired Immune Deficiency Syndromes and Human Retrovirology. 1998;19:61-66.
8. Choi KH, Kumekawa E, Dang Q et al. Risk and protective factors affecting sexual behavior among young Asian and Pacific Islander men who have sex with men: Implications for HIV prevention . Journal of Sex Education & Therapy. 1999;24:47-55.
9. Beeker C, Kraft JM, Peterson JL, et al. Influences on sexual risk behavior in young African-American men who have sex with men. Journal of the Gay and Lesbian Medical Association. 1998;2:59-67.
10. Greenwood GL, White EW, Page-Shafer K, et al . Correlates of heavy substance use among young gay and bisexual men: The San Francisco Young Men’s Health Study . Drug and Alcohol Dependence. 2001:61:105-112.
11. CDC. Compendium of HIV prevention interventions with evidence of effectiveness . 1999.
12. The COLOURS Organization, Inc . Philadelphia, PA. 215/496-0330.
13. Clay RA. Healthy Schools project hoped to ease discrimination . APA Monitor. 1999;30.
14. The STOP AIDS Project . Q Action, ¡Ya Basta! San Francisco, CA. 415/865-0790×303.
15. Seal DW, Kelly JA, Bloom FR, et al. HIV prevention with young men who have sex with men: what young men themselves say is needed . AIDS Care. 200;12:5-26.
16. Stokes JP, Peterson JL. Homophobia, self-esteem, and risk for HIV among African American men who have sex with men . AIDS Education and Prevention. 1998;10:278-292.

Prepared by Pilgrim Spikes MPH Phd, Bob Hays PhD, Greg Rebchook PhD, Susan Kegeles PhD, CAPS April 2001. Fact Sheet 8ER

Reproduction of this text is encouraged; however, copies may not be sold, and the Center for AIDS Prevention Studies at the University of California San Franciso should be cited as the source of this information. For additional copies of this and other HIV Prevention Fact Sheets, please call the National Prevention Information Network at 800/458-5231. Comments and questions about this Fact Sheet may be e-mailed to [email protected]. © April 2001, University of California

¿Qué necesítan los sordos en la prevención del VIH?

¿están a riesgo de contraer el VIH?

Si. Se estima que en los EEUU existen de 7,000 a 26,000 personas carentes del sentido auditivo infectadas con el VIH.¹ Sin embargo, los Centros para el Control de Enfermedades (CDC por sus siglas en Inglés) actualmente no recopilan información acerca de los que padecen de sordera y VIH o SIDA. Maryland fue el primer estado en incluir preguntas relacionadas con el sentido auditivo en el área de consejería y al realizar pruebas de detección. En Maryland, el 4.3% de la población sorda padecen de la infección con VIH.² Existen cerca de dos millones de personas que no pueden oir, y una de cada 10 Norteamericanos padecen de problemas auditivos. Las personas que carecen del sentido auditivo han luchado por mucho tiempo por obtener igualdad en acceso a servicios sociales y médicos, educación y empleos. Actualmente en los EEUU, existe poca información sobre VIH y sordera, pocos servicios de prevención o tratamiento, y escasa investigación para los sordos.³

¿cuáles son los factores de riesgo?

Existen altos índices de abuso de substancias en la communidad sorda. Una de cada siete personas (1 de 7) que no oyen tiene una historia de abuso de sustancias versus una de cada diez (1 de 10) reportada por la población sin problemas auditivos.³ El abuso de las sustancias puede ser un factor de riesgo para contraer el VIH ya que reduce la inhibición y altera el juicio, lo cual puede conducir a conductas sexuales poco seguras. Compartir el equipo de inyección es otro de los riesgos de transmisión del VIH. Existe muy poca educación sobre el VIH o sobre sexualidad en las escuelas para sordos, especialmente en escuelas para adolescentes. Debido a esto, las personas sordas poseen un menor conocimiento y están menos concientes de los riesgos de transmisión del VIH, tratamiento y prevención. Si los niños sordos no aprenden sobre el VIH u otras enfermedades de transmisión sexual, no van a tener el vocabulario adecuado para hablar del tema entre ellos. Un estudio entre estudiantes de una escuela para sordos descubrió que los adolescentes del 9 al 12 grado tenían un conocimiento extremadamente limitado sobre el SIDA. Los estudiantes solamente acertaron 8 de la 35 preguntas básicas sobre SIDA.⁴ Los hombres sordos que tienen sexo con hombres pueden sufrir discriminación dentro de la comunidad de sordos. Por este motivo, los hombres sordos que tienen sexo con hombres esconden a menudo su identidad y pueden llegar a presentar comportamientos sexuales furtivos, anónimos y de mucho riesgo. Muchos hombres sordos que tienen sexo con hombres también desean tener relaciones con hombres no sordos, lo cual dificulta aún mas la comunicación sobre la práctica segura del sexo.³ Se ha descubierto que los niños discapacitados, incluyendo a niños sordos, están a mayor riesgo de sufrir abuso sexual tanto en la escuela como en el hogar. En un estudio a niños sordos y no sordos de un instituto de lenguaje se descubrió que el 54% de los varones sordos reportó abuso, comparado con el 10% reportado por los no-sordos. Las niñas sordas reportaron índices de abuso del 50% comparado con el 25% reportado por las niñas no sordas. El abuso sexual a temprana edad es un fuerte indicador de los comportamientos sexuales de alto riesgo, del abuso de sustancias, e infección con VIH en la edad adulta.⁶

¿cuáles son las barreras en la prevención?

Para la mayoría de las personas sordas en los EEUU, el Lenguaje Americano de Signos (ASL) es su primer idioma, Inglés o Español el segundo. El ASL es un lenguaje complejo de gestos y señales con su propia gramática y sintaxis. La única forma de comunicarse en ASL es cara a cara. El material escrito sobre VIH en ASL Gráfico disponible es escaso. Aunque algunas personas sordas pueden leer material escrito tales como los panfletos utilizados en la prevención del VIH, para algunas personas sordas con un nivel de Inglés o Español limitado, estos panfletos son ineficaces.⁷ La comunidad sorda es un grupo muy unido, esto a veces significa que así como se recibe un fuerte apoyo a veces lo que se recibe es una fuerte condena. La privacidad es muy importante en esta comunidad donde las noticias vuelan muy rápido. Muchas personas sordas prefieren ir solas a hacerse la prueba de detección del VIH y a recibir consejería totalmente oral ya que traer a un intérprete o ir a una clínica para sordos pone a riesgo su privacidad aunque también a la misma vez exponen la comunicación y la comprensión.⁸ El hacerse la prueba usando un equipo casero de detección del VIH tampoco ofrece la solución al problema de la privacidad ya que estas personas necesitan a un intérprete por medio del teléfono o a través de un intermediario para conocer los resultados.

¿qué puede ayudar en la prevención?

Conocer las áreas mas fuertes de esta comunidad puede ser muy útil en los esfuerzos de prevención. El hecho de que esta comunidad sea tan unida significa que existe un mayor grado de intimidad física y emociónal. La naturaleza visual del ASL requiere tratar temas como el sexo y el uso de las drogas abiertamente y con mucha franqueza. Cuando estos temas salen a la luz, las personas sordas a menudo se sienten mas cómodas al hablar del los temas, logrando al unísono un mayor entendimiento y una mejor negociación en cuanto al comportamiento seguro.⁸ Las instituciones para sordos deben tratar temas que tradicionalmente han estado tapados o que han sido tabú en esta comunidad, tales como el abuso de la drogas y el alcohol, el abuso sexual a temprana edad y la homofobia. En 1998, la Línea Nacional del SIDA del CDC envió más de un millar de cartas a escuelas estatales para sordos ofreciendo programas educacionales sobre SIDA para estudiantes sordos o con problemas auditivos. De éstas solamente 3 escuelas respondieron.:7

¿qué se está haciendo?

Un programa creado por el Centro de Salud Mental de la Universidad Gallaudet ofrece entrenamiento sobre VIH/SIDA a profesionales de salud mental que trabajan con la comunidad sorda, utilizando videos con subtítulos o leyendas, dibujos, actividades de grupo y modelos sobre como el VIH se adhiere a las células.⁹ En París, Francia, la Unidad Móvil de Prevención de SIDA (EMIPS) utilizó una variedad de programas para llevar el mensaje a los adolescentes sordos dentro y fuera de las escuelas para sordos. Un joven educador sordo visitó escuelas para sordos y presentó una intervención en lenguaje por señas. El programa creó varias anuncios públicos exponiendo las falsas creencias del riesgo que envuelve al VIH. El programa también abrió una clínica que no requiere de cita previa en la que el Doctor(a) se comunica por medio del lenguaje por señas. Sin embargo, la clínica no estuvo muy concurrida ya que estaba demasiado identificada con el SIDA. Cuando el programa abrió un centro de detección de VIH dentro de una clínica general se obtuvo mayor éxito.¹⁰ En Minnesota, el programa para personas que carecen o tienen dificultades auditivas que dependen de sustancias químicas y otras drogas ofrecen tratamiento para los adictos al alcohol y otras drogas en los EEUU y Canadá. El personal está capacitado específicamente para tratar a personas con problemas auditivos parcial o total y en tratar el abuso de sustancias, además, han desarrollado métodos terapeúticos sin problemas de comunicación. Por otra parte, el programa ofrece entrenamiento a estudiantes y profesionales que trabajan con personas sordas, tienen además un centro de recursos para diseminar material y proveen fondos para intérpretes que asisten a reuniones de AA/NA (Alcohólicos Anónimos/Narcóticos Anónimos).¹¹

¿qué queda por hacer?

Crear material educativo y buscar la forma de llegar a esta comunidad, no solo alrededor del tema del VIH o del SIDA también sobre temas tan amplios como la salud sexual y el uso de sustancias psicotrópicas. Las escuelas para sordos necesitan ofrecer educación sobre sexualidad y sobre el uso de sustancias y proveer consejería a niños y adolescentes que hayan experimentado abuso. Los programas para sordos deben tratar temas específicos de esta comunidad, tales como negociar el sexo seguro con una pareja no sorda, abogar por los servicios del cuidado de salud y derribar las barreras que impiden tratar el problema del abuso sexual y abuso de drogas. Los programas de prevención de VIH para personas sordas deben ser lo mas claro y visuales posibles. Los programas no deben ser diseñados a manera de presentación sólamente, deben además dedicar mayor tiempo a debatir el tema, incorporar actividades físicas, fotos, muñecos, manuales gráficos en ASL y videos con subtítulos.¹² Para poder llegar a las comunidades de sordos tanto investigadores como proveedores de servicios deben aprovechar los avances tecnológicos tales como los videos interactivos y la internet.¹³ Si bien es cierto que ya se han hecho esfuerzos a todo nivel para educar a la comunidad sorda sobre el tema del VIH/SIDA, todavía existen discrepancias sobre el tipo de información crucial que debe recibir la población que realmente lo necesita. Cada estado al igual que el CDC necesita añadir preguntas sobre discapacidades al recaudar datos estadísticos para poder determinar el alcance de la epidemia en la población sorda. Se necesitan más programas que ayuden a desarrollar un mayor conocimiento y disipar los mitos acerca de la transmisión del VIH y las conductas de riesgo de las personas sordas. Los pocos programas populares que existen deben ser evaluados y replicados en toda la nación.

¿quién lo dice?

1. Friess S. Silence = Deaf . Poz Magazine. April 1998. p.60-63. 2. Personal communication. Department of Health and Mental Hygiene, State of Maryland. 1999. 3. Peinkoffer JR. HIV education for the deaf, a vulnerable minority . Public Health Reports. 1994;109:390-396. 4. Baker-Duncan N, Dancer J, Gentry B, et al. Deaf adolescents’ knowledge of AIDS. Grade and gender effects . American Annals of the Deaf. 1997;142:368-372. 5. Sullivan PM, Vernon M, Scanlan JH. Sexual abuse of deaf youth . American Annals of the Deaf. 1987;132:256-262. 6. Johnsen L, Harlow L. Childhood sexual abuse linked with adult substance use, victimization, and AIDS-risk . AIDS Education and Prevention. 1996;80:44-57. 7. Campbell D. AIDS and the deaf community. ADVANCE for Speech-Language Pathologists & Audiologists. April 26, 1999; p.10-11. 8. Morrone JJ. Peer education and the deaf community. Journal of American College Health. 1993;41:264-266. 9. Sleek S. HIV/AIDS education efforts have missed deaf community. American Psychological Association Monitor. 1999. 10. Grivois L, Houette A. Outreach programs towards deaf people targeting prevention of AIDS. Presented at the 11th International Conference on AIDS, Vancouver, Canada. June 1996. Abst. #MoD240. 11. Program celebrates ten years. Steps to Recovery. Published by the Minnesota Chemical Dependency Program for Deaf and Hard of Hearing Individuals. Spring/Summer 1999. 12. Gaskins S. Special population: HIV/AIDS among the deaf and hard of hearing. Journal of the Association of Nurses in AIDS Care. 1999;10:75-78. 13. Lipton DS, Goldstein M, Wellington Fahnbulleh F, et al. The interactive video-questionnaire: a new technology for interviewing deaf persons . American Annals of the Deaf. 1999;141:370-378.

Recursos:

Línea Nacional del SIDA de los CDC, Servicio Para Sordos Y Personas Con Dificultad En Oír American Sexual Health Association https://www.ashasexualhealth.org/ 

PREPARADO POR BRYAN DETERMAN** NATASHA KORDUS** Y PAMELA DECARLO*** *CLINICA MONTROSE, HOUSTON, TX, **ESCUELA PARA SORDOS DE CALIFORNIA,***CAPS Agosto 2000. Hoja Informativa 36S.

How Do HIV, STD and Unintended Pregnancy Prevention Work Together?

Why is it important?

HIV is a sexually transmitted disease (STD). HIV, other STDs (such as gonorrhea, syphilis, herpes, chlamydia and trichomoniasis), and unintended pregnancy are all adverse consequences of sexual behavior. If someone is at risk for unintended pregnancy or common STDs, that means they are engaging in an activity that could also put them at risk for HIV. In addition, these STDs may increase the likelihood of HIV acquisition. STDs are the most frequently reported diseases in the US. Every year in the US, about 12 million new cases of STDs occur, 3 million of them among teenagers.¹ In 1996, for the first time in the US, the number of AIDS deaths decreased. However, new cases continue to occur, and the largest proportionate increase in AIDS incidence in 1996 occurred among men and women who acquired AIDS through heterosexual contact (28% increase for men, 23% for women).² Over half of the 6.4 million pregnancies in the US in 1988 were unintended (56%). As many of those pregnancies ended in abortion (44%) as in birth (43%).³ In 1996, over half a million young women under age 20 gave birth, and two-thirds of those were unintended.⁴ Unintended pregnancy has great personal and social consequences.

Do STDs affect HIV?

Absolutely. First, an HIV- person who has an STD is 2- to 5-times more susceptible to HIV acquisition because the lesions and immune response associated with STDs make it easier for HIV to enter the body. Second, an HIV+ person who has an STD can be more infectious and more easily transmit HIV to an uninfected partner. Third, an HIV+ person may be more likely to acquire other STDs. This “epidemiological synergy” may be responsible for the explosive growth of HIV in some populations.⁵ Many research studies have shown the connection between HIV and STDs. A study in Malawi found that HIV+ men with gonorrhea had concentrations of HIV in their semen eight times higher than HIV+ men who did not have another STD. After treatment for the STD, HIV concentration in semen decreased to levels not significantly different from pre-STD levels. This suggests that STDs increase the infectiousness of HIV, and that detecting and treating STDs in HIV+ persons may help prevent HIV transmission.⁶ Clients at urban STD clinics in Miami, FL who had at least two HIV tests were found to have high rates of HIV and syphilis. Among clients tested twice, 10% acquired syphilis and 4% HIV in the interval. African-Americans accounted for 77% of HIV seroconversions and the rate was highest in women, especially 15-19 year olds. The majority of HIV infections were acquired heterosexually. A total of 18% of all seroconversions were associated with syphilis acquired between two HIV tests.⁷

Are STD and HIV prevention connected?

Yes and no. While the epidemics of STD and HIV have grown in parallel, prevention efforts to combat the adverse consequences of sexual behavior have not always worked in tandem. In the US HIV epidemic, heterosexual transmission is an increasing cause of infection, and people of color and younger people are increasingly infected. This is also true of STDs in the Southeast and selected large cities across the US, where syphilis, gonorrhea and HIV epidemics clearly overlap, especially among young African-American women.⁸ HIV prevention efforts may be more effective among certain populations if condom use and HIV are addressed together with STD or pregnancy prevention. Young people are much more likely to know someone who has had an STD or an unintended pregnancy than they are to know someone with HIV. HIV prevention programs, as well as family planning and STD clinics, might create a more effective and realistic message by putting all three together-HIV, STDs and unintended pregnancy-and saying condoms can protect against all three.^9,10

What’s working?

In rural Tanzania, a community-level program focused on improving diagnosis and treatment of STDs as means to prevent HIV infection. The program included training existing health center staff in STD management, ensuring availability of effective antibiotics for STDs, and providing periodic outreach to educate on STDs and increase health care use. Individuals in the intervention communities had lower HIV incidence (by about 40%) compared to persons in non-intervention communities.¹¹ Project RESPECT was a randomized HIV counseling and testing program conducted at STD clinics in five cities in the US with high HIV seroprevalence. The program evaluated whether interactive counseling is more effective than informational messages in reducing risk behaviors and preventing HIV and other STD transmission. The program found relatively little difference between 4-session and 2-session interactive counseling interventions, but found lower rates of new STDs, including HIV, among those groups compared to groups that only received information. Reported condom use increased across all groups. Project RESPECT demonstrated that brief risk-reduction counseling strategies can be effectively conducted in busy public clinic settings, and that counseling interventions can change STD rates in high-risk populations.¹² An HIV prevention program was implemented at an STD clinic in the South Bronx, NY, due to the clinic’s access to large numbers of high-risk men and women. The program was designed to have minimal disruption on clinical services while providing culturally-appropriate counseling. Patients had access to either a video on condom use in English or Spanish, or both the video and an interactive group session. Patients were given coupons for free condoms at a pharmacy several blocks from the clinic. Clients who saw the video were more likely to redeem coupons than those who did not, and clients who saw the video and participated in group sessions were even more likely to redeem coupons.¹³ People of Color Against AIDS Network (POCAAN) in Seattle, WA found that because of the stigma of HIV, prevention educators were not always successful at reaching at-risk populations, especially young African-American and Latino males ages 13-35. In 1990 POCAAN decided to educate about STDs and sexual health since these messages were more acceptable to the target population. The program uses street outreach and presentations in various settings such as juvenile facilities, middle and high schools, ESL classes and drug treatment centers. They offer referral vouchers that ensures clients will be seen at an STD clinic and that it will be free. In addition, POCAAN continually updates and educates its staff about STDs and works hard to integrate STD prevention messages into all its HIV-related activities.¹⁴

What still needs to be done?

It is time to further integrate STD, HIV and unintended pregnancy efforts, both on a programmatic and a research level. Wherever and whenever feasible, HIV prevention behavior change programs, STD clinics, family planning clinics and primary care facilities need to incorporate all three-HIV, STDs and unintended pregnancy-in their education, testing, counseling and treatment services.¹⁰ Research on HIV, both clinical and behavioral, needs to include the effects of STD and pregnancy. Although funding for HIV, STDs and family planning have traditionally been separate, government agencies and foundations need to provide funds for improved coordination or integration. Workers in STD, HIV and family planning should be cross-trained. Community Planning Groups should consider STD and unintended pregnancy prevention plans as well in areas where the epidemiology warrants. A comprehensive HIV prevention strategy uses many elements to protect as many people at risk for HIV as possible. As funding for social services grow more scarce, it is important to not pit STDs and unintended pregnancy against HIV in the fight for money, but to adopt new approaches to fight these overlapping epidemics.

Says who?

1. Eng TR, Butler WT, eds. The Hidden Epidemic: Confronting Sexually Transmitted Diseases. Washington, DC : National Academy Press; 1997. 2. Centers for Disease Control and Prevention. Update: trends in AIDS incidence-United States, 1996 . Morbidity and Mortality Weekly Report. 1997;46:861-867. 3. Forrest JD . Epidemiology of unintended pregnancy and contraceptive use . American Journal of Obstetrics and Gynecology. 1994;170:1485-1489. 4. Centers for Disease Control and Prevention. State-specific birth rates for teenagers-United States, 1990-1996 . Morbidity and Mortality Weekly Report. 1997;46:837-842. 5. Wasserheit JN. Epidemiological synergy. Interrelationships between human immunodeficiency virus infection and other sexually transmitted diseases . Sexually Transmitted Diseases. 1992;19:61-77. 6. Cohen MS, Hoffman IF, Royce RA, et al. Reduction of concentration of HIV-1 in semen after treatment of urethritis: implications for prevention of sexual transmission of HIV-1 . The Lancet. 1997;349:1868-1873. 7. Otten MW, Zaidi AA, Peterman TA, et al. High rate of seroconversion among patients attending urban sexually transmitted disease clinics . AIDS. 1994;8:549-553. 8. St. Louis ME, Wasserheit JN, Gayle HD. Editorial: Janus considers the HIV pandemic-harnessing recent advances to enhance AIDS prevention . American Journal of Public Health. 1997;87:10-12. 9. Cates W. Sexually transmitted diseases and family planning. Strange or natural bedfellows, revisited . Sexually Transmitted Diseases. 1993;20:174-178. 10. Stein Z. Family planning, sexually transmitted diseases, and the prevention of AIDS-divided we fail? American Journal of Public Health. 1996;86:783-784. 11. Grosskurth H, Mosha F, Todd J, et al . Impact of improved treatment of sexually transmitted diseases on HIV infection in rural Tanzania: randomized controlled trial . The Lancet. 1995;346:530-536. 12. Kamb ML, Bolan G, Zenilman J, et al. Does HIV/STD prevention counseling work? Results from a multi-center randomized trial. Presented at 12th Meeting of the International Society of Sexually Transmitted Diseases Research, Seville, Spain. 1997.

• Contact: Mary Kamb (404) 639-2080.

13. O’Donnell LN, San Doval A, Duran R, et al. Video-based sexually transmitted disease patient education: its impact on condom acquisition . American Journal of Public Health. 1995;85:817-822

• Contact: Lydia O’Donnell, Education Development Center, (617) 969-7100 X2368.

14. US Conference of Mayors. Sexual Health and STDs: an avenue to HIV prevention services. AIDS Information Exchange. 1995:12:6-8.

Contact: Kevin Harris (206) 322-7061 x233.

Prepared by Pamela DeCarlo* and Nancy Padian PhD** *CAPS, **UCSF Department of Obstetrics, Gynecology and Reproductive Sciences

December 1997. Fact Sheet #31E

Reproduction of this text is encouraged; however, copies may not be sold, and the Center for AIDS Prevention Studies at the University of California San Francisco should be cited as the source of this information. For additional copies of this and other HIV Prevention Fact Sheets, please call the National AIDS Clearinghouse at 800/458-5231. Comments and questions about this Fact Sheet may be e-mailed to [email protected]. © December 1997, University of California

How Can Service Providers and Researchers Collaborate in HIV Prevention?

Why collaborate?

“Research on HIV prevention—no matter how good—does not stop HIV infection. HIV behavioral research can only stop HIV infection when results of the research can be used to make applied programs better.”¹ -Jeff Kelly

Everyone working in HIV prevention wants to know that their efforts make a difference towards halting the spread of HIV. When researchers and community-based organizations (CBOs) collaborate, the outcome can be better community programs and better science, resulting in improved HIV prevention. Researchers need to learn about how health education and community organizing programs function in order to evaluate or create interventions that are feasible in real world settings. They also need to gain access to research participants (clients of CBOs) and disseminate research findings in the most useful way. Working with CBOs and their clients can improve research.”² The mission of most CBOs is program delivery, not evaluation. CBOs may need to collaborate with a researcher when using tested interventions, evaluating ongoing programs and incorporating theory into intervention design. Working with researchers can improve programs.”³ Federal, state, local and private funders are increasingly requiring CBOs both to use theory in designing programs and to evaluate their programs.

What does collaboration involve?

Researchers and service providers can work together in many ways and the degree of collaboration can vary. Collaboration can be a simple act that is not very time consuming, such as CBOs getting help with questions on a survey or researchers learning more about client populations. Even if the relationship between a researcher and service provider is limited, there are ways to bring the expertise of all participants together and optimize outcomes of their joint work. Collaboration can also be relatively complex and time- and resource-intensive. Service providers and researchers may collaborate on program evaluation, program design, data analysis or research. Typically, these collaborations involve 1) selecting the researcher and CBO partner; 2) developing a relationship; 3) deciding on a research or programmatic question; 4) conducting the research or evaluation; 5) analyzing and interpreting the data; and 6) disseminating the findings.”⁴ The last step in the collaboration would involve developing programs based on the research findings.

What are barriers to collaboration?

Collaboration can be understood as a cross-cultural experience: a meeting of the culture of research and the culture of CBOs. Researchers and providers have distinct work cultures including norms, incentives, jargon, sense of time, resources, training, education, and expectations, that are often at odds with each other.”⁵ For example, CBO staff often must respond to clients with immediate needs. Researchers, on the other hand, often work on 2-5 year grants with more long-term objectives. While their common goal may be slowing the epidemic, each has different contributions and strategies for achieving that end. Often CBOs mistrust researchers. Researchers are seen as “using” the CBO, collecting data with no return of information and taking all of the credit.”⁶ Service providers often see researchers as over-resourced. For example, CBO staff may be paid far less than the researchers they collaborate with. On the other hand, researchers are often frustrated by the fast pace, limited staff time and lack of prioritization of research activities found in CBOs. An inherent power imbalance exists when researchers and CBOs work together on research projects. Researchers are often seen as “experts” by virtue of their academic degree. The expertise of CBO staff—knowledge of the community, understanding how interventions work and access to the population—is often overlooked and undervalued by researchers.

What’s being done?

One simple yet vital method of collaboration is making sure that data collected by the researcher is available to CBOs to use. The University of British Columbia in Canada conducted a large-scale study of health care and community resources used by persons living with HIV/AIDS. After the study, they hired a Community Liaison Researcher to work with CBOs to jointly determine their information needs, and conduct tailored analyses of the large and valuable database for use in CBO programs.”⁷ Another more complex method of collaboration involves working together from the beginning to develop programs. The San Francisco AIDS Foundation (SFAF) wanted to understand why gay/bisexual men were continuing to become HIV-infected. They initiated a collaboration with CAPS, UCSF to conduct qualitative research among high-risk men. SFAF and research staff met weekly to discuss the research question, design the instrument and discuss the transcripts. This led to the agencies collaboratively developing and evaluating two interventions and a media campaign. The programs, Gay Life and Black Brothers Esteem, are ongoing.”⁸ Collaborations often require a solid infrastructure for support. In San Francisco, CA, the CAPS collaboration initiative provided funding, training, supervision, technical assistance and researcher pairing for CBOs to conduct program evaluation. This initiative was jointly funded through the university and private funders. CBOs developed research questions and conducted evaluation with the aid of researchers. Findings were disseminated through public forums and a special issue of a journal. This collaborative model has been replicated across the US.”⁹

What are best practices?

Although collaborating can be a resource and labor-intensive activity, the benefits for the CBO, researcher and the field of HIV prevention are worth the investment. The following recommendations can help ensure a successful experience:^10,11

• Choose CBO or researcher partners carefully. Interview several different individuals or agencies. Always ask for and check references.
• Establish buy-in, input and ownership from agency staff and directors.
• Define roles and responsibilities clearly and repeatedly.
• Plan and budget for time for CBO-researcher communication and meetings.
• Address conflict when it arises.
• Allow flexibility to modify or change the scope of research.
• Expect staff turnover and allow time to orient and train new staff.
• Support agencies to build capacity before engaging in outcome research. Formative, descriptive and theory-development research are useful; outcome evaluation is not always the best choice for new interventions or new CBOs.
• Build a safety net into the research design. If you are evaluating a new intervention, make sure to include alternative research questions from the start.
• Plan for community dissemination strategies throughout all stages of research.
• Jointly monitor for research quality control.
• Secure adequate resources and support for intervention and evaluation time.

What supports collaboration?

There are some recent initiatives that support collaborative work, including federal, foundation and university grants. Funders, however, still need to set aside money for researchers and CBOs to work together, and the requirement for this should be structured into the grant.”¹² This way, much-needed program funds aren’t diverted into research. Local and state health departments can help by matching CBOs and researchers and then fostering the collaboration. In addition to requiring adequate funding, collaboration requires time, energy and commitment. Without support for these basic requirements, the ultimate goal of collaboration—more effective HIV prevention—will not be achieved.

Says who?

1. Kelly JA, Somlai AM, DiFranceisco WJ, et al. Bridging the gap between the science and service of HIV prevention: transferring effective research-based HIV prevention interventions to community AIDS service providers . American Journal of Public Health. 2000;90:1082-1088. 2. Schensul JJ. O rganizing community research partnerships in the struggle against AIDS . Health Education & Behavior. 1999; 26:266-283. 3. Holtgrave DR, Qualls NL, Curran JW, et al. An overview of the effectiveness and efficiency of HIV prevention programs . Public Health Reports. 1995;110:134-146. 4. Harper GW, Salinan DD. Building collaborative partnerships to improve community-based HIV prevention research: The university-CBO collaborative partnership (UCCP) model. Journal of Prevention & Intervention in the Community. 2000;19:1-20. 5. Gomez C, Goldstein E. The HIV prevention evaluation initiative: a model for collaborative and empowerment evaluation. In: The Empowerment Evaluation: Knowledge and Tools for Self-Assessment and Accountability . Fetterman, Wandersman and Kaftarian, eds. Sage Publications, 1995. 6. Perkins DD, Wandersman A. “You’ll have to overcome our suspicions”: the benefits and pitfalls of research with community organizations. Social Policy. 1990;21:32-41. 7. James S, Hanvelt R, Copley T. The role of the Community Liaison Researcher- returning research to the community. Presented at the AIDS Impact Conference, Ottawa. July 15-18, 1999. 8. Bey J, Durazzo R, Headlee J, et al. Prevention among african american gay and bisexual men. Presented at the 8th International AIDS Conference, Durban, South Africa. Abst# WePeD4523. 9. Haynes Sanstad K, Stall R, Goldtsein E, et al. Collaborative Community Research Consortium: a model for HIV prevention. Health Education & Behavior. 1999;26:171-184. 10. Goldstein E, Freedman B, Richards A, et al. The Legacy Project: lessons learned about conducting community-based research. Published by the AIDS Research Institute, University of California San Francisco, Science to Community series. 2000. prevention.ucsf.edu/uploads/bibindex.php . 11. Acuff C, Archambeault J, Greenberg B, et al. Mental health care for people living with or affected by HIV/AIDS: A practical guide. Published by the Research Triangle Institute. 1999. #6031. 12. DiFranceisco W, Kelly JA, Otto-Salaj L. Factors influencing attitudes within AIDS service organizations toward the use of research-based HIV prevention interventions . AIDS Education and Prevention. 1999;11:72-86. Resources: Behavioral and Social Science Volunteer Program (BSSV) American Psychological Association 750 First Street, N.E. Washington, D.C., 20002-4242 202/218-3993 Fax: 202/336-6198 e-mail: [email protected] https://www.apa.org/topics/hiv-aids HIV Community-Based Research www.cbrc.net Loka Institute PO Box 355 Amherst, MA 01004 413/559-5860 https://centerhealthyminds.org/programs/loka-initiative 

PREPARED BY Ellen Goldstein MA*, Beth Freedman MPH*, Dan Wohlfeiler MPH** *CAPS, **STD Prevention Training Center April 2001. Fact Sheet #40E

Reproduction of this text is encouraged; however, copies may not be sold, and the Center for AIDS Prevention Studies at the University of California San Franciso should be cited as the source of this information. For additional copies of this and other HIV Prevention Fact Sheets, please call the National Prevention Information Network at 800/458-5231. Comments and questions about this Fact Sheet may be e-mailed to [email protected]. ©April 2001, University of California