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¿Cómo se utiliza la ciencia en la prevención del VIH?

¿es necesaria la ciencia? Sí. Aunque la ciencia de la prevención por si sola no ofrece la respuesta, esta posee algunas piezas críticas del rompecabezas de la prevención. La ciencia en conjunto con la experiencia de algunas agencias en el manejo de clientes además de reforzar el programa sirve de inspiración y guía para hacer un mejor uso de los escasos fondos que enfrentan los programas de prevención. Esta hoja informativa intentará abordar algunos de los elementos básicos que ofrecen las ciencias de la prevención, su significado, y su implicaciones en la práctica. Actualmente, es un requisito usar la ciencia de la prevención en muchas áreas. En 1994, el CDC cambió radicalmente su criterio para designar los programas que serían subsidiados. El CDC recomienda que los Grupos de Planificación Comunitaria (CPGs por sus siglas en Inglés) tomen en cuenta la epidemiología, la evaluación, las teorías científicas del comportamiento, descubrimientos y la metodología en la creación de estos programas.¹ La ciencia aplicable a la prevención del VIH puede dividirse en cinco categorías generales: la ciencia de la epidemiología, la ciencia conductual básica, la ciencia básica del cambio conductual, la ciencia de la intervención y la metodología de la evaluación. la epidemiología La epidemiología es el estudio de los casos de infección u otras enfermedades dentro de la población. Nos informa sobre la cantidad de nuevos casos de infección con VIH, la subpoblación afectada, y las que pueden llegar a infectarse. La epidemiología conductual puede indicar la frecuencia de las conductas de riesgo.² La epidemiología local puede servir de mucho a los planificadores de programas de prevención ya que les permite identificar la comunidad y las conductas de riesgo que necesitan ser tratadas. Esto a su vez puede ser muy útil para hacer mejor uso de los recursos limitados. El departamento de salud y el CDC pueden ayudar recopilando datos de los diferentes grupos poblacionales.³ la ciencia conductual básica Los elementos básicos de esta ciencia exploran la influencia que los factores sociales, culturales y conductuales ejercen sobre las personas. Esto nos permite entender el porque las personas se exponen al riesgo y porque sigue en aumento la cantidad de infectados con VIH. El estudio de la sexualidad es un elemento clave que ayuda a entender los cambios en las conductas riesgo con relación al sexo y facilita la tarea del diseño del programa.⁴ No señala exactamente lo que habrá de hacerse, sino que sugiere diferentes formas de pensar en cuanto a los elementos que el programa debe tener. Por ejemplo, recientemente se descubrió una estrecha relación entre el abuso sexual a temprana edad y las conductas de riesgo en la adultez.⁵ Con estos antecedentes, los planificadores del programa pueden agregar preguntas sobre abuso sexual a temprana edad para asesorar las necesidades del caso. Se puede también agregar un segmento sobre abuso infantil a las intervenciones con sesiones educativas múltiples o crear programas para los que fueron abusados y/o capacitar al personal sobre el tema del abuso sexual. la ciencia de los cambios de conducta La teoría del cambio conductual nos brinda un marco de ideas sobre como y por que ocurren estos cambios de conducta que exponen a las personas a riesgo de contraer el VIH. Para lograr mantener unidos cada uno de los componentes del modelo al diseñar una intervención puede ayudar usar las Teorías de cambio conductual.⁶ Por ejemplo, la teoría de Paulo Freire sobre la Educación Popular propone que el alumno y el maestro aprendan el uno del otro.⁷ Si se usa esta teoría, un programa puede reemplazar las lecturas por discusiones de grupo. De esta forma la intervención se hace más fuerte puesto que las personas adquieren por si mismas el poder o la responsabilidad que les permitirá cambiar el ambiente que les rodea. la ciencia de la intervención La ciencia de la intervención analiza los componentes más eficaces del programa e identifica los programas que han logrado un cambio en ciertas poblaciones. Por ejemplo, en un estudio reciente, las personas que estaban a mayor riesgo no asistieron a los talleres de sexo seguro. Un programa para hombres gay/bisexuales de Portland, OR, hizo su campaña en bares, organizando eventos comunitarios y reuniones en casas, y ofreciendo talleres de sexo seguro. Mientras la mayoría de los hombres asistió a la mayor parte de las actividades, pocos asistieron a los talleres.⁸ El estudio científico del programa indicó que la mayoría de los hombres atraídos por el programa eran jóvenes los que presentaban mayor riesgo o los hombres que reportaron sexo anal sin protección.⁸ Las intervenciones que intentan trabajar con poblaciones de alto riesgo pueden obtener la atención de esta audiencia con un programa a nivel comunitario intensivo, innnovador, que ofrezca actividades sociales y consejería, con una estructura no complicada. la metodología de la evaluación La evaluación estimula el pensamiento crítico en el proceso del diseño de la intervención y no necesariamente debe ocurrir al final de la intervención. Una buena evaluación genera información acerca de las necesidades que tiene el grupo a ser intervenido, el tipo de servicios necesarios, el impacto del programa y los resultados del mismo. Esto a la vez que permite conocer la opinión del cliente, les brinda la oportunidad a los proveedores del servicio de ajustar el programa para aumentar su efectividad.⁹ Por ejemplo, el Centro de Salud Tri-City de Fremont, CA, encuestó a jóvenes de la calle para evaluar la efectividad del programa en cuanto a los talleres educativos y a la forma de atraer a los necesitados. En base a la opinión de los jóvenes, el Tri-City reemplazó los talleres con horas establecidas por un servicio disponible a cualquier hora. Este nuevo servicio ofreció educación sobre VIH, apoyo en áreas tales como la deserción escolar, el desempleo, el abuso de drogas, las relaciones abusivas y como vivir con el VIH.¹⁰ ¿cómo se obtiene el acceso a la ciencia? No se requiere un nivel de educación avanzado para comprender la ciencia de la prevención. Existen algunas organizaciones que interpretan y resumen los resultados de la investigación a un lenguaje claro y conciso. La función de los CPGs es la de incorporar la ciencia de la prevención en todos sus planes, los cuales están disponibles a través de los departamentos de salud estatales y locales.¹¹ Las universidades locales son un excelente punto de contacto en cuanto a la asistencia con las investigaciones.¹² Pertenecer a listas de envío por correo y a Boletines Informativos especializados en las ciencias de la prevención puede ser un recurso invaluable.¹³ ¿qué queda por hacer? Estrechar aún más los esfuerzos de los investigadores y de los proveedores de servicio: 1) Los investigadores deben compartir datos reveladores con los CBO locales, con el CDC y con el departamento de salud pública. También es necesario ejercer una participación activa en los CPG. 2) Los CBO locales deben ser más agresivos y pro-activos haciendo uso de la información que existe fuera de las agencias. 3) Los departamentos de salud pública estatales y el CDC deben reconocer y poner en práctica su papel de traductores de esta ciencia. 4) Los Institutos Nacionales de Salud, el CDC y las Fundaciones Privadas deberán integrar la ciencia en los programas de prevención y proveer los fondos para este fin.¹⁴ El uso de la ciencia en la aplicación del servicio es un campo especializado. La mayoría de los investigadores no están capacitados para aplicar sus proyectos de investigación en el mundo real. Así como la mayoría de los proveedores de servicio no están capacitados para aplicar los métodos de investigación. Un programa de prevención completo utiliza muchos elementos para proteger del VIH a la mayor cantidad de personas posible. Si logramos acortar la distancia entre la ciencia y la práctica de la prevención , nos aseguraríamos que nuestros esfuerzos no van a ser en vano y haremos la diferencia en la lucha contra el VIH.

¿quién lo dice? 1. Valdiserri RO, Aultman TV, Curran JW. Community planning: a national strategy to improve HIV prevention programs. Journal of Community Health. 1995;20:87-100. 2. Rothman KJ. Modern Epidemiology. Boston, MA: Little, Brown and Company; 1986. 3. Si desea encontrar información con datos epidemiológicos los puede encontrar por estado y por ciudad (ciertas) en la internet: http://hivinsite.ucsf.edu/InSite?page=li-12-01#S2X  4. Kelly JA, Kalichman SC. Increased attention to human sexuality can improve HIV-AIDS prevention efforts: key research issues and directions. Journal of Consulting and Clinical Psychology. 1995;63:907-918. 5. Jinich S, Stall R, Acree M, et al. Childhood sexual abuse predicts HIV risk sexual behavior in adult gay and bisexual men. Presented at the 11th International Conference on AIDS, Vancouver, BC. 1996. Abstract Mo.D.1718. 6. Valdiserri RO, West GR, Moore M, et al. Structuring HIV prevention service delivery systems on the basis of social science theory. Journal of Community Health. 1992;17:259-269. 7. Wallerstein N. Powerlessness, empowerment, and health: implications for health promotion programs. American Journal of Health Promotion. 1992;6:197-205. 8. Hoff CC, Kegeles S., Acree M, et al. Gay men at highest risk are best reached through outreach in bars and community events. Presented at the 11th International Conference on AIDS, Vancouver, BC. 1996. Abstract Tu.D.360. 9. San Francisco HIV Prevention Plan. Report prepared by the San Francisco HIV Prevention Planning Council and the Department of Public Health AIDS Office. 1996. 10. Carver LJ, Harper GW. Responding to the HIV prevention needs of suburban street youth. Presented at the 11th International Conference on AIDS, Vancouver, BC. 1996. Abstract Th.D.4921. 11. Para mayor información sobre su Grupo Comunitario local o estatal, póngase en contacto con Lynne Greabell de NASTAD (202) 434-8090. 12. Un directorio de universidades está disponible en la internet en: https://en.wikipedia.org/wiki/List_of_state_and_territorial_universities_in_the_United_States

• CDC (800) 458-5231 (www.cdc.gov/nchstp/hiv_aids/dhap.htm)
• American Psychological Association (202) 336-6042
• National Minority AIDS Council (202) 483-6622
• National Association of People With AIDS (202) 898-0414
• Academy for Educational Development (202) 884-8700
• National Alliance of State and Territorial AIDS Directors (202) 434-8090
• Council of State & Territorial Epidemiologist (770) 458-3811
• The US Conference of Mayors (202) 293-7330
• GMHC Education Department (212) 807-7517 (www.gmhc.org)
• UCSF Center for AIDS Prevention Studies https://prevention.ucsf.edu/
• Rural Prevention Center (812) 855-1718 https://rcap.indiana.edu/

14. Goldstein E, Wrubel J, Faigeles B, et al. Is research important for non-governmental organizations in the United States? Presented at the 11th International Conference on AIDS, Vancouver, BC. 1996. Abstract Th.C.4779.

Preparado por Pamela DeCarlo y Ellen Goldstein, Traducción Romy Benard-Rodríguez Septiembre 1997. Hoja Informativa 25S.

How is rapid testing used in HIV prevention?

why rapid testing?

It is estimated that 25% of all HIV+ persons in the US do not know they’re infected.¹ Taking an HIV antibody test and knowing one’s HIV status are key to preventing the spread of HIV. Many persons who test HIV+ can access counseling, prevention education, support services and medical care to stay healthy and not progress to AIDS. HIV- persons can access counseling and education to remain HIV-. However, even when people choose to get tested, many never return for their results. In public test sites, up to 33% of clients who test HIV- and 25% who test HIV+ never return for their results.² The rapid HIV test is a new, FDA-approved approach to HIV testing that addresses these issues. Conventional HIV testing has been conducted with needle blood draws or mouth swabs which are sent to a laboratory for analysis. Clients need to return to the test site 1-2 weeks later to find out their results. With rapid tests, clients can take the test, receive counseling, and find out their results all in one visit. This can help increase the number of persons who get tested and reduce the number of persons who don’t return for their results.³ Many government and non-governmental agencies are moving toward rapid testing instead of conventional testing. The Centers for Disease Control and Prevention’s (CDC) Strategic Plan for 2005 seeks to increase the number of HIV+ persons who know their HIV status from 70% to 95%—using rapid testing is an integral part of the plan.1 In California, the goal is to have 80% of all state-funded HIV test sites use rapid tests by the end of 2006.⁴

how is rapid testing done?

Rapid testing uses a finger stick, blood draw or mouth swab to collect samples. The test counselor places the sample in a tube with chemicals to process it, and can read the results in about 20 minutes. Counseling and risk reduction planning with the client can take place during the waiting time, or can be done before or after sample collection. Within 20 minutes, most rapid tests will either be non-reactive—a negative test result—or reactive—a preliminary positive result. Currently, if a result shows preliminary positive, a second conventional blood or oral sample is required to confirm it. 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.⁵ There are currently four FDA-approved rapid HIV tests in the US: Reveal, OraQuick, Multispot and Uni-Gold.⁶ All tests are extremely accurate, with 99.6-100% sensitivity rates.⁷ Only two of the tests—OraQuick and Uni-Gold—are Clinical Laboratory Improvement Amendment (CLIA) waived. OraQuick Advance uses a mouth swab and can be performed in a wider range of settings and temperatures. Rapid testing can be done in most clinical offices and in a large number of non-traditional health care and outreach settings such as mobile vans, storefronts, shelters, bathhouses,⁸ labor and delivery clinics and emergency rooms. Testing in alternative venues can help increase testing among populations that are mobile or hard to reach, including migrant workers, homeless persons, adolescents and young adults.⁹ Rapid testing can change the way HIV testing is done. Most HIV test sites currently have counselors and separate phelobotomists who take the blood sample. With rapid testing, the test counselor can also take the sample and analyze it. However, in some rapid test sites, counselors do the consent and counseling and someone else still collects the sample.

is rapid testing rapid counseling?

No. One study found no difference in STD rates after counseling with rapid tests and conventional tests.¹⁰ Rapid tests still allow for plenty of counseling time. Counselors have about 20 minutes between taking a sample and receiving the results to provide focused and specific counseling about the client’s real risks and possible exposure to HIV. Rapid testing counseling can be more intense due to the immediacy of getting results.¹¹ Clients who receive a preliminary positive result and must return for their confirmation result may be more prepared to deal with their diagnosis. Clients often have had a week to think about what testing positive means and may be more emotionally prepared to listen to and digest referrals and options the counselors can provide.

can my agency/clinic offer it?

Agencies have several considerations to make before deciding to use rapid testing. The client flow will be different because counselors are involved with each client for longer periods of time than during conventional testing. Agencies have greater responsibility because they are handling blood or oral samples. To do this, most agencies must apply to the government for a CLIA certificate,¹² provide quality assurance, keep records and create documentation. If test counselors are also conducting the test, they may need training to collect and process samples, run controls and track the tests. They will also need in-depth knowledge of referral resources for issues that may emerge in new, more focused HIV counseling sessions. Counselors typically may have concerns about the new testing procedures and counseling initially. After they’ve been trained and have provided a number of counseling sessions, they become more comfortable and often say they wished they had become involved in HIV rapid testing sooner.¹³ In some clinical settings it is easier to implement rapid testing because healthcare workers are used to taking samples, running controls and using universal precautions. However, clinicians may not be used to counseling when testing for HIV,¹⁴ and may need training to develop stronger counseling skills and provide adequate referrals.

what’s being done?

The Metro Atlanta Women of Color Initiative (MAWOCI) brought rapid testing, prevention education and linkage to medical care to African American women in community settings such as churches, college campuses, homeless shelters and public housing. Staff were trained in HIV test counseling, rapid testing and condom demonstrations. To facilitate referrals, MAWOCI mapped local resources, forged alliances with agencies serving women of color and assessed capacity of HIV care doctors and clinics. More than 99% of women returned for confirmatory test results.¹⁵ The introduction of OraQuick in counseling and testing sites throughout the state of New Jersey resulted in an increased number of previously undiagnosed HIV cases as well as an increased number of patients receiving both their test results and posttest counseling. Within the first year, 10,429 patients received the rapid test. Of this group, 99.7% received their test results, compared to 65% before rapid testing.¹⁶ In Seattle, WA, the public health department routinely provides rapid testing to persons at high-risk in bathhouses, needle exchange sites and STD clinics. They made this decision after conducting research showing that more people received their test results with rapid testing and it was more cost-effective than conventional blood or oral fluid testing strategies.⁸ The Night Ministry in Chicago, IL, provides rapid testing in health outreach buses for homeless adults and youth and pregnant and parenting teens. The buses are staffed by a nurse, two HIV test counselors and a minister, and offer general health care, mental health services, STD and hepatitis C screening as well as coffee, cookies and condoms. For clients who test HIV+, the program offers bus cards, telephone calling cards and referrals to physicians experienced in providing HIV care.¹⁷

what is the future of rapid testing?

The future is now. Outside of the US, rapid testing is widely used and confirmatory tests are also done with rapid test, eliminating any waiting period for persons who test HIV+. Manufacturers have been slow to seek approval for tests in the US because the FDA has strict policies about licensing new HIV tests. Rapid testing has been met with great enthusiasm in some areas and great trepidation in others. As federal and state governments increase requirements for rapid testing, resources for training, technical assistance and funding need to increase for the agencies that implement rapid testing. State and federal reimbursement protocols, as well as public and private insurance, need to be changed to encourage rapid testing.

Says who?

1. Centers for Disease Control and Prevention. HIV Prevention Strategic Plan Through 2005. https://www.cdc.gov/nchhstp/strategicpriorities/default.htm 2. Kendrick SR, Kroc KA, Withum D, et al. Outcomes of offering rapid point-of-care HIV testing in a sexually transmitted disease clinic. Journal of AIDS. 2005;38:142-146. 3. Sullivan PS, Lansky A, Drake A. Failure to return for HIV test results among persons at high risk for HIV infection: results from a multistate interview project. Journal of AIDS. 2004;35:511-518. 4. Dowling T. Outreach and prevention rapid HIV testing in non-clinical settings. Presented at the California Rapid Testing Conference. 2004. 5. Kassler WJ, Dillon BA, Haley C, et al. On-site, rapid HIV testing with same-day results and counseling. AIDS. 1997;11:1045-1051. 6. Reveal: www.reveal-hiv.com/  7. Branson BM. Point-of-care rapid tests for HIV antibodies. Journal of Laboratory Medicine. 2003;27:288-295. 8. Spielberg F, Branson BM, Goldbaum GM, et al. Choosing HIV counseling and testing strategies for outreach settings: a randomized trial. Journal of AIDS. 2005;38:348-355. 9. Ellen JM, Bonu S, Arruda JS, et al. Comparison of clients of a mobile health van and a traditional STD clinic. Journal of AIDS. 2003;32:388-393. 10. Metcalf CA, Douglas JM, Malotte CK, et al. Relative efficacy of prevention counseling with rapid and standard HIV testing: a randomized, controlled trial (RESPECT-2). Sexually Transmitted Diseases. 2005;32:130-138. 11. Rapid HIV antibody testing. HIV Counselor Perspectives. 2003; 12:1-8. 12. Centers for Medicare and Medicaid Services. How to apply for a CLIA certificate, including foreign laboratories.http://www.cms.hhs.gov/CLIA/06_How_to_Apply_for_a_CLIA_Certificate,_Inc…(Accessed 4/20/06) 13. Birkhead GS, San Antonio-Gaddy ML, Richardson-Moore AL, et al. Effect of training and field experience on staff confidence and skills for rapid HIV testing in New York state. Presented at the International Conference on AIDS, Bangkok, Thailand. 2004. Abst #MoPeE4103. 14. Tao G, Branson BM, Anderson LA, et al. Do physicians provide counseling with HIV and STD testing at physician offices or hospital outpatient departments? AIDS. 2003;17:1243-1247. 15. Thompson MA, Williams S, Williams K, et al. MAWOCI: a novel program providing transportable prevention education, rapid HIV testing, free CD4+ testing and linkage to medical care for women of color in Atlanta, GA. Presented at the 2003 National HIV Prevention Conference, Atlanta, GA. Abst #M1-G0502. 16. Cadoff EM. Rapid HIV testing increases detection rates and posttest counseling. Presented at the Annual Meeting of American College of Preventive Medicine. Feb 17, 2005. Poster 35. 17. Rapid HIV testing popular with Chicago CBO clients. AIDS Alert. February 2005. 18. Rapid testing for HIV: An issue brief. NASTAD HIV Prevention Update. September 2000.

PREPARED BY TOM DONOHOE* AND JAY FOURNIER *UCLA/PACIFIC AIDS EDUCATION AND TRAINING CENTER May 2005 . Fact Sheet #58E Special thanks to the following reviewers of this Fact Sheet: Bernard Branson, Marc Butlerys, Grant Colfax, Teri Dowling, Emily Erbelding, Shelley Facente, Keith Folger, Carol Galper, Cindy Getty, Patrick Keenan, Sally Liska, Rosa Solorio, Peter Shalit, Freya Speilberg, Deanna Sykes, Barbara Weiser. 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]. © May 2005, University of California

What is the role of the family in HIV prevention?

Why families?

Families have great influence over a person, and that influence can last a lifetime. Even people who are no longer or never were in touch with their family are influenced by their absence. One half of all persons with HIV became infected during adolescence or early adulthood (ages 15-24). Working with families as early as possible in children’s lives helps solidify healthy behaviors and relationships, thus preventing risk before it happens. HIV prevention has traditionally focused on the individual and not the family. Yet families can have both positive and negative impact on sexual and drug using behaviors that put a person at risk for HIV. Families are important determinants of adolescent sexual behavior, can affect men and women as they “come out” as gay and lesbian and can affect injection drug users (IDUs) as they gain and lose ties to family throughout the years. For this fact sheet, families are defined as the people you grew up with: fathers, mothers, uncles, aunts, cousins, grandparents or foster parents. Many families have strong ties with the community as well, making the community a strong influence. We will not be discussing families of choice, such as intimate social networks.

How do families affect risk behavior?

Families can help protect themselves and their children from risky sexual and drug using behaviors. Family connectedness and parent child communication are key for ensuring healthy behaviors.¹ Likewise, when families are not connected and adolescents feel they can’t talk to the adults in their lives, there is a greater risk of unhealthy behavior. Adolescents who feel connected to their families and perceive their parents as caring are more likely to postpone their sexual debut, use contraception, have fewer pregnancies and fewer children.^2,3 Two key aspects of parenting that are influential to adolescents are their beliefs that their parents know who they spend time with, and know where they are when they’re not at home or at school.¹ In families with strong religious values and an emphasis on marriage and having children, young gay men can have a hard time coming out to their parents. Young men may fear that having a gay son could cause the family shame, or that they will disappoint their parents by not getting married and having children.⁴ This can lead to internalized shame and low self esteem which contribute to risky behavior. A child who grows up in a family where high stress, alcoholism, substance use and domestic violence are the norm, may repeat that behavior as an adult. Many alcohol and substance abusers have a family history of alcoholism and substance abuse and high levels of domestic violence. In addition, family members sometimes are the ones who give young people their first puff of marijuana, first taste of alcohol or first injection of drugs.⁵ Family childhood physical abuse, sexual abuse and neglect often lead to risky sexual behavior and drug use in adolescence and adulthood. One study of persons who left methadone maintenance found that 36% had experienced sexual abuse as a child, 60% physical abuse, 57% emotional abuse, 66% child physical neglect and 25% all four experiences. Persons with a history of childhood abuse reported more sexual partners and those with physical neglect were more likely to be HIV+.⁶

W hat puts families at risk?

Families that have problems often produce children who have problems. Stress, poverty, violence and substance abuse in families leads to less family cohesion, less communication and less tolerance. As a result, teens experience more abuse, neglect and risky drug use and sexual behavior. Neighborhoods with few job opportunities and high levels of drug use and violence have a negative impact on teenage sexual behavior.⁷ Work and feeling overworked can greatly affect family life. At every economic level, work-related stress negatively impacts family cohesion and communication. When parents have long work hours and feel burned out by their jobs, they don’t have enough time for themselves or their families.⁸

What’s being done?

The Collaborative HIV Prevention and Adolescent Mental Health Project is a family-based preventive intervention. The program is based on the needs of urban African American youth and their families living in neighborhoods with high HIV infection rates. It seeks to 1) address pre-adolescent behavior, 2) target specific child, parent, and family factors in preventing HIV risk exposure and 3) address high HIV infection rates through a family-based approach. The program offers multiple family groups, a pre-adolescent component, an adolescent component, and stresses the importance of community collaboration.⁹ Family to Family is a structural intervention that strengthens family functioning and the bonds that connect families to each other. Designed to address a broad range of social issues, the program seeks to increase family communication in a community with high rates of violence, drug abuse and HIV infection. The program uses family groups and life coping skills to address issues such as forgiveness, communication, responsibility, teamwork, family traditions, and household management.¹⁰ While many schools and community agencies have begun to offer risk reduction programs for gay/lesbian/bisexual/transgender (GLBT) youth, there are few programs to help GLBT children and their parents. Groups such as Parents, Families & Friends of Lesbians & Gays (PFLAG) offer support and education.¹¹ In San Francisco, CA, a coalition of agencies serving Latino gay and bisexual men started a media campaign to address family cohesion. In their research they found that women were overwhelmingly identified as a source of support: mothers, sisters, aunts and cousins. The campaign “Families Change, Families Grow/Las Familias Cambian, Las Familias Crecen,” used posters showing a mother hugging her adult son’s boyfriend with the caption, “Mom got to know my boyfriend, now there’s a place for him too.” Keepin’ it R.E.A.L.!, a program for adolescents and their mothers, works to increase parental knowledge about HIV and sexuality issues and increase comfort discussing these issues with their children. The program gave mothers and teens a chance to interact and bond, as well as gave mothers a chance to communicate with each other. Women in the program were more likely to talk to their adolescents about sex. School classes that give homework assignments for students to talk to their parents about sexual topics can be effective. The assignments are required, and parents don’t have to go anywhere, but can talk to their children at home.

What still needs to be done?

Families need support to increase communication and build strong bonds as early as possible. Many HIV prevention programs acknowledge that families play a large role in determining risk behavior, but few programs offer interventions for families. In addition to supporting persons who are already engaged in risky behaviors, programs should support family members so that risk behavior doesn’t have cause to start. To establish open communication and solidify family bonds, special care must be taken to encourage gay and lesbian youth to talk about their sexuality, especially in families with strong values regarding the importance of marriage and bearing children. Gays and lesbians are prohibited by law from marrying, may not wish to have children and are often prohibited from adopting children. Community institutions such as churches and schools can work with prevention programs to educate their members and instill tolerance and acceptance of diverse sexual identities. Too often, communities hardest hit by drug use, crime and poverty also have the highest rates of HIV and the lowest rates of family and community support. However, negative outside influences can often be overcome with the help of a strong family. Family strengthening programs, parenting centers and hotlines are needed. Well monitored recreational activities and community centers are also necessary so that parents can know their children will be safe when not at home.

Says who?

1. DiClemente RJ, Wingood GM, Crosby R, et al. Parental monitoring: Association with adolescents’ risk behaviors. Pediatrics. 2001;107:1363-1368. 2. Resnick MD, Bearman PS, Blum RW, et al. Protecting adolescents from harm: Findings from the National Longitudinal Study on Adolescent Health. Journal of the American Medical Association. 1997; 278:823-32. 3. Kirby D. Emerging Answers: Research Findings on Programs to Reduce Teen Pregnancy, Washington, DC: National Campaign to Prevent Teen Pregnancy, 2001. 4. Newman BS, Muzzonigro PG. The effects of traditional family values on the coming out process of gay male adolescents. Adolescence.1993;28:213-216. 5. Hampton RL, Senatore V, Gullotta TP, editors. Substance abuse, family violence and child welfare. Thousand Oaks, CA: Sage Publications; 1998. 6. Kang SY, Deren S, Goldstein MF. Relationships between childhood abuse and neglect experience and HIV risk behaviors among methadone treatment drop-outs. Child Abuse and Neglect. 2002;26:1275-1289. 7. Averett SL, Rees D, Argys LM. The impact of government policies and neighborhood characteristics on teenage sexual activity and contraceptive use.American Journal of Public Health. 2002; 92:1773-1778. 8. Gallinsky, E. Ask the children: A breakthrough study that reveals how to succeed at work and parenting. Quill Publications. 2000. 9. Madison SM, McKay MM, Paikoff R, et al. Basic research and community collaboration: Necessary ingredients for the development of a family-based HIV prevention program. AIDS Education and Prevention. 2000;12:281. 10. Fullilove RE, Green L, Fullilove MT. The Family to Family program: A structural intervention with implications for the prevention of HIV/AIDS and other community epidemics. AIDS. 2000;14S1:S63-S67. 11. PFLAG. www.pflag.org 12. Freedman B. Great HIV prevention campaigns are not just born. CAPS Exchange. 2000. prevention.ucsf.edu/uploads/CEsummer2000.pdf 13. DiIorio C, Resnicow K, Dudley WN, et al. Social cognitive factors associated with mother-adolescent communication about sex. Health Communications.2000;5:41-51. 14. Kirby D, Miller BC. Interventions designed to promote parent-teen communication about sexuality. New Directions for Child and Adolescent Development. 2002;97:93-110. Prepared by Lesley Green*, Bob Fullilove*, Pamela DeCarlo** *Community Research Group, Columbia University, **CAPS April 2003. Fact Sheet #49E Special thanks to the following reviewers of this Fact Sheet: Roberta Downing, Beth Freedman, Doug Kirby, Mary McKay, Lydia O’Donnell, Birdy Paikoff, Pam Woody.

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 2003, University of California

Is HIV Counseling and Testing Effective for Prevention?

While voluntary HIV counseling and testing has been demonstrated to be useful for care and support, the effectiveness of counseling and testing for prevention has not been conclusively demonstrated [1-6]. There have been very few studies of the effectiveness of counseling and testing for prevention, and even fewer randomized trials [7-8], despite repeated calls for controlled studies[1,6,9]. While speculation continues regarding the potential usefulness of counseling and testing despite its relatively high cost, there are currently insufficient data to determine either the efficacy or the true cost of the intervention in relation to the number of infections that could be prevented by it (cost-effectiveness). Arguments in favor of more widespread HIV testing and counseling include that counseling and testing provides an opportunity for education and behavior change and that knowledge of serostatus allows individuals to plan, make important life decisions and to seek care and support [10]. On the other hand, HIV counseling and testing is an expensive intervention compared to health education and other potentially effective prevention strategies. In addition, there are potentially negative social consequences of counseling and testing including family and relationship disruption, sexual violence, stigma and discrimination [11-12]. The Voluntary HIV Counseling and Testing Efficacy Study was a clinical trial conducted in 1995-1997 to test the effectiveness and consequences of Voluntary HIV Counseling and Testing for the prevention of new HIV infections. This is an important policy issue, particularly in countries where health care resources are limited. More specifically the purpose of the study was to determine if counseling and testing, whether given to individuals or couples, might be effective in reducing risk behavior for the sexual transmission of HIV.

References

[1] Higgins DL, Galavotti C, O'Reilly K, et al. Evidence for the Effects of HIV Antibody Counseling and Testing on Risk Behaviors. JAMA 1991; 266:2419-2429. [2] DeZoysa I, Phillips KA, Kamenga MC, et al. Role of HIV counseling and testing in changing risk behavior in developing countries. AIDS 1995: S95-S101. [3] Landis SE, Earp JL, Koch GG. Impact of HIV Testing and Counseling on subsequent sexual behavior. AIDS Education and Prevention; 1992; 4:61-70. [4] Zenilman JM, Erickson B, Fox R, Reichart CA, Hook III EW. Effect of HIV posttest Counseling on STD incidence. JAMA 1992; 267:843-845. [5] Otten Jr MW, Zaidi AA, Wroten JE, Witte JJ, Peterman TA. Changes in Sexually Transmitted Disease Rates after HIV Testing and Posttest Counseling, Miami 1988 to 1989. American Journal of Public Health 1993; 83:529-533. [6] Beardsell S. Should wider HIV testing be encouraged on the grounds of HIV prevention? AIDS Care 1994; 6:5-19. [7] Wenger NS, Linn LS, Epstein M, Shapiro MF. Reduction of High-Risk Sexual Behavior among Heterosexuals Undergoing HIV Antibody Testing: A Randomized Clinical Trial. American Journal of Public Health 1991; 81:1580-1585. [8] Wenger NS, Greenberg JM, Hilborne LH, Kusseling F, Mangotich M, Shapiro MF. Effect of HIV Antibody Testing and AIDS Education on Communication about HIV Risk and Sexual Behavior. Annuals of Internal Medicine 1992; 117:905-911. [9] Phillips KA & Coates TJ. HIV counseling and testing: research and policy issues. AIDS Care 1995; 7:115-124. [10] Müller O, Barugahare L, Schwartländer B, et al. HIV prevalence, attitudes and behavior in clients of a confidential HIV testing and counseling center in Uganda. AIDS 1992; 6:869-874. [11] Colebunders R & Ndumbe P. Priorities for HIV testing in developing countries? The Lancet 1993; 342:601-602. [12] van der Straten A, King R, Grinstead O, Serufilira A, Allen S. Couple communication, sexual coercion and HIV risk reduction in Kigali, Rwanda. AIDS 1995; 9:935-944.

While you are setting up your equipment, getting the consent form, etc. take note of the surroundings for your field notes.

1. I’d like you to think back to the last time you got an HIV test. Take a minute to remember everything you can about it and then tell me the whole story. Starting from what led up to the test, why you went to get it, where it was done and then how you felt afterwards?

If they have never tested, skip to question # 6: Let interviewee describe the episode. Listen for answers to each of the following questions. Once interviewee's story is told, probe for any questions not answered. Content Areas for HIV Testing: Motivation: including why they decided to test, whether strictly voluntary, coerced or mandatory testing (prison, hospital), where they found out about testing/test site Location: Where was the test site? Procedures: Describe the actual test? (blood/Orasure) Who administered? How was the counseling? What was discussed in counseling? (Probe for discussion of risk behaviors, results, follow-up appointment) How did you feel after you left? Confidentiality: avoid using the words "confidential" or "anonymous" Were you concerned about privacy at all? (Probe for name or number given, familiar test site, familiar test counselor/administrator) Waiting Period: How was the waiting period? Tell me about any changes that occurred during this time period. Did you talk to anyone about HIV and/or the test during the waiting period? Results: When did you go back for results? IF didn’t get results ask why. If had another test where did get results, what was different this time? Where did you go for results? Who gave them? (probe for familiarity with results counselor) How was the result explained/presented to you? What were your results? Was this the result you were expecting? Why? How did you feel after receiving the results? What was discussed after you received the results? (probe for discussions around risk, 6 month window period, referrals given, IF NEGATIVE — ways to stay negative, any plans made to stay negative) Was talking to them useful/helpful? Did you just want to get out of there? Who did you share your results with? 2. How did this compare to other tests you’ve had, did you like it or not? Was it typical of other tests? 3. After this HIV test, did anything change in your life? (drug use, sex, views on risk) If yes, explain what changed. If NO ask: 4. Have you ever had an HIV test that caused you to change your beliefs or behaviors? If yes, please explain what changed. (Probe for what aspect of C&T caused the change; i.e. was it the risk assessment counseling, or receiving the test results) 5. Is there anything [else] that caused you to change your beliefs or behaviors? (i.e. drug use, sex, views on risk) If yes, please explain what it was, and what changed. 6. Have you ever thought about testing/or been approached about testing? What happened? How did you hear about it? Why did you decide not to test? What do you think would happen if you did test?

Now I’d like to ask you a few more general questions about HIV testing. If they have already discussed their testing pattern above skip 1,2 & 3. 1. How many times have you tested in your life? 2. How often do you test? 3. Do you test regularly? If so, why?

This next section is very general. We are just trying to get a sense of people’s everyday lives. 1. Describe yesterday. What did you do when you got up in the morning until you went to bed? Content Areas for Daily Life: Location(s) Who respondent interacted with during the day Drug Use Resources: eating, getting money Time frames (what time did they get up, what time to bed, etc.) 2. How, in any way, was this different from a typical day?

I have a couple general questions about drugs and then I’d like to ask you more specifically about the last time you used.1. What kinds of drugs do you use now? Probe for all drugs, including alcohol and those used sporadically 2. When do you use and how much? Ask for each drug mentioned above 3. Can you describe to me what happened the last time you used. Tell me the whole story from when it began until where you think it ended. I’d like to know who you were with, what you used, etc. Let interviewee describe the episode. Listen for answers to each of the following questions. Once interviewee's story is told, probe for any questions not answered. Content Areas for Drug Narrative: In this section we want to get at settings, people, and social and physical conditions which shape use; decisions and rules, spoken and tacit. Before Using: How were you feeling/What kind of mood were you in? What was going on at the time? Buying and preparing: Time and place. How were drugs procured? Who got them? Who paid? How did you get money for the drugs/buy in? If didn’t have money, how did you get your portion? Who was there? What are your relationships with these people? Who prepared drugs, how? How were drugs measured? Probe for using ONE syringe to divide up drugs into other syringes— was the loader’s syringe new or used; were receivers’ syringes new or used. Who or what determined how much each person got? Taking: How did you take the drugs (inject self, injected by another person, smoke, snort) Where did you get the (pipe, works)? Whose (rigs, pipe) did you use? Who went first (second, third, etc.) and why? Afterwards: How did you feel, what did you do afterwards? Did you need any other drugs to come down? 4. How, in any way, was this different from your usual experience using? 5. How does your drug use fit into your sex life? How does your drug use impact your sex life? Probe for drugs used before, during and after sex.

Let me ask you a few general questions about your relationships. 1. Do you currently have a steady partner(s) (girlfriend, boyfriend, husband, wife, etc.)? If so, tell me about her/him or them? Individual characteristics of their partner. (age, gender, and ethnicity). Relationship with this partner (duration and nature of relationship, where/when/how met partner; main, casual, paying or exchange) Probe around past sexual experiences with this partner. What attracted you to her/him? What did you like about her/him? (if appropriate)

Now I would like to ask some personal questions about your sexual behavior. We realize that this is a very personal subject, but your answers are very important to our research. Your answers will remain completely confidential and remember names will not be attached to any of this information. 1. I would like to talk about the last time you had sex with someone without a condom. When was that? NOTE: This includes when a condom broke and when there was dipping. 2. Could you think back now and try to remember as much as you can about that time, and tell me the story of how it happened? Try to remember when it happened, who you were with, what you were doing and how you felt. Let interviewee describe the episode. Listen for answers to each of the following questions. Once Interviewee's story is told, probe for any questions not answered. Content Areas for Sexual Interactions: Sexual partner: Individual characteristics of this sex partner. (age, gender, and ethnicity). Relationship with this partner (duration and nature of relationship, where/when/how met partner; main, casual, paying or exchange) Past sexual experiences with this partner What attracted you to him/her? (if appropriate) Before Sex: What was going on at that time? How did it happen? (When did it happen?, who initiated?, where were you?) How were you feeling? (Were you expecting to have sex? Did either one of you talk about it first? What were you hoping to get out of it?) Sexual Events: What happened? (types of sex: anal, oral, vaginal, mutual masturbation, digital, etc.) What determined the kinds of sex you had? (active vs. passive roles, verbal vs. nonverbal c communication, payment, consent, etc.)  How did you make a decision to NOT use a condom?/Why didn’t you use condoms? Birth control method of any kind used Using (Drugs): Drugs or alcohol used by you or this sex partner before, during or after having sex. (Injected drugs/non-injected drugs/alcohol; levels of intoxication) What did using have to do with this sexual encounter? (sex/drug exchanges, drugs enhancing sex, sex enhancing drug, etc.) HIV/AIDS: Issue of HIV ever discussed (Your status? Partner’s status? If so, how? Before or after sex?) If not discussed, then what did you believe (or assume)? Before or after sex? How did knowing or not knowing your partner’s HIV status affect having sex this time. After Sex: Thinking back over this particular experience, is there anything that you would have wanted to happen differently? Tell me about that. Generalizability - Typical or unusual compared to most of other sexual interactions Relationship potential - Someone you wanted to see again? To have sex with again? 3. How was this different from your usual experience having sex without a condom? 4. How was this different from the last time you had sex WITH a condom? 5. Thinking about when you have sex in general, what makes it easier to use condoms/protection with your partners? (Probes: nature of relationship; how long they knew their partner; serostatus) 6. Thinking about when you have sex in general, what are some of the reasons you haven’t used condoms/protection? 7. How are these situations (using a condom verses not using a condom) different. 8. How is having sex with your "steady partner" (whatever term interviewee uses) different from having sex with others, such as casual partners, one-night stands or tricks?