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Disclosure

How does disclosure affect HIV prevention?

why is disclosure important in HIV?

Disclosure of HIV+ status is a complex, difficult and very personal matter. Disclosing one’s HIV+ status entails communication about a potentially life threatening, stigmatized and transmissible illness. Choices people make about this are not only personal but vary across different age groups, in different situations and contexts, and with different partners, and may change with time, depending on one’s experiences. Disclosure may have lifelong implications since more people are living longer, and often asymptomatically, with HIV. Public health messages have traditionally urged disclosure to all sexual and drug using partners. In reality, some HIV+ persons may choose not to disclose due to fears of rejection or harm, feelings of shame, desires to maintain secrecy, feelings that with safer sex there is no need for disclosure, fatalism, perceived community norms against disclosure, and beliefs that individuals are responsible for protecting themselves.1 This Fact Sheet primarily focuses on disclosure in the context of sex. Discussing and disclosing HIV status is a two-way street. Be it right or wrong, most people feel that when a person knows that he/she is HIV+ then he/she has an obligation to tell the other person, and counselors are encouraged to help people with this process. Also, laws in some areas require disclosure of HIV+ status prior to sex.2 However, both partners should be responsible for knowing their own status, disclosing their own status when it seems important, and asking their partner about their status if they want to know. Most HIV+ persons disclose their status to some, but not all, of their partners, friends and family. Disclosure generally becomes easier the longer someone has been living with HIV, as he/she becomes more comfortable with an HIV+ status. Disclosure to sex partners is more likely in longer-term, romantic relationships than in casual relationships (one-night stands, anonymous partners, group scenes, etc.).3 Disclosure also varies depending on perceived HIV status of partners, level of HIV risk of sex activities, sense of responsibility to protect partners (personal vs. shared responsibility) and alcohol or drug use.

does disclosure affect sexual relationships?

The relationship between disclosure, sexual risk behaviors and potential transmission of HIV varies. Research findings have presented a mixed picture.4 Some studies have found that increased disclosure is associated with reduced sexual risk behavior.5 Other studies show that disclosure doesn’t always alter risk taking behaviors.6 Even with disclosure, unsafe sex sometimes occurs. Some people engage in safer sex behaviors without any discussion of HIV status.7 Disclosure can provide psychological benefits. In one study, HIV+ injection drug users who disclosed their status experienced increased intimacy with partners and reaffirmation of their sense of self.8 Many HIV+ persons who disclose their status find that it reduces anxiety about transmission, so sex can be much more comfortable and relaxed. A challenging issue for many people is the timing of disclosure. If it’s not done relatively early, it can become more difficult as time goes on, and can cause significant disruption to an ongoing relationship if the disclosed-to partner feels betrayed due to the lack of an earlier disclosure. HIV+ persons who have thought through a disclosure plan and have a consistent strategy for managing disclosure are less likely to engage in risky sexual behaviors than those who do not disclose or have inconsistent disclosure strategies.5

does disclosure affect social relationships?

Yes. Disclosure to significant others can help increase support for HIV+ persons. A study of Latino gay men found that disclosure was related to greater quality of social support, greater self-esteem, and lower levels of depression.9 Disclosure also can lead to support that facilitates initiation of, and adherence to, HIV treatment and medications.10,11 Disclosing HIV+ status can and sometimes does result in rejection, discrimination or violence. Disclosing to certain persons also can be more of a burden than a benefit. One study found that friends were disclosed to most often and perceived as more supportive than family members, and mothers and sisters were disclosed to more often than fathers and brothers and perceived as more supportive than other family members.12

what are the controversies?

There is debate around whether partners have a right to know if their partner is HIV+, in order to be able to make a fully informed decision about what sexual behavior to engage in. Some HIV+ persons believe that if they only have protected sex, there is no need for disclosure, especially with casual partners, and that encouraging disclosure only serves to further stigmatize HIV+ persons. These issues can be complicated by complex gender role norms and local laws—23 states have laws that make it a crime for a person to engage in certain risk behaviors without disclosing their HIV status.2 People may use disclosure as a way to limit their partners to only persons of the same status, be it HIV+ or HIV- (sometimes known as serosorting). The success of serosorting as a prevention strategy depends upon honest and accurate disclosure on the part of any two sexual partners.13 Even when persons do choose to disclose, their awareness of their own HIV status may not be accurate.14 For example, some people who think that they are HIV- may be, in fact, in the acute stage of HIV infection. If an individual is in the acute stage of HIV infection, which are the initial weeks to months after acquiring HIV when the body has not yet produced a detectable antibody response, then he or she will have a negative result on a standard HIV test. This is especially concerning because when people are in this stage of infection, they more readily transmit the virus during unprotected sex than at other times.15

what’s being done?

Because many experts believe that HIV+ status disclosure helps prevent HIV transmission and increases social support for HIV+ individuals, there are efforts to develop programs to encourage disclosure and make it a constructive experience. Most programs to support HIV status disclosure have been part of overall prevention and well-being programs for HIV+ persons. Programs may include discussions of the benefits of disclosure, when to disclose and to whom. Programs should include practicing skills to discuss HIV status in the context of sexual negotiation and dating. The Healthy Living Project is a 15-session, individually delivered, cognitive behavioral intervention to help HIV+ persons cope with the challenges of living with HIV. The project addressed issues of stress, coping and adjustment, safer behavior, including disclosure to partners, and health-related behaviors. Participants reported fewer unprotected sexual risk acts with persons of HIV- or unknown status.16 Healthy Relationships is a 5-session, small-group skills-building program for HIV+ persons, and is one of the CDC’s Diffusion of Effective Interventions (DEBI). It is designed to reduce participants’ stress related to safer sexual behaviors and disclosure of their HIV status to family, friends and sex partners. Participants reported significantly less unprotected intercourse and greater condom use at follow-up.17 Other disclosure approaches have aimed at encouraging both HIV+ and HIV- persons to not make assumptions about their partner’s HIV status, to get tested, to disclose their own status and practice safer sex with all partners. The Department of Public Health in San Francisco, CA, created the Disclosure Initiative social marketing campaign which aims to normalize the disclosure of HIV status for both HIV+ and HIV- men.18

what needs to be done?

We need to normalize and facilitate comfortable discussions about HIV, so that disclosure of HIV+ status isn’t such a difficult thing to do. The more HIV is talked about, and the more people come out about being HIV+, the less stigma there will be. Disclosure is a two-way street. That means it is up to both people who are having sex with each other to address the issue. People living with HIV often are much happier in their relationships (long and short-term) when their HIV status is known by their partner. There’s no simple answer or policy for disclosure of HIV. Clinicians, counselors and programs need to be sensitive to the complexity of disclosure, and understand that disclosure is not for all people in all contexts. However, disclosing one’s HIV status can facilitate support for HIV+ persons and may lead to better communication, including discussion of risk reduction practices between sexual partners.

Says who?

1. Wolitski RJ, Parsons JT, Gómez CA, et al. Prevention with HIV-seropositive men who have sex with men: lessons from the Seropositive Urban Men’s Study and the Seropositive Urban Men’s Intervention Trial. Journal of AIDS. 2004;37:S101-109. 2. Galletly CL, Pinkerton SD. Conflicting messages: how criminal HIV disclosure laws undermine public health efforts to control the spread of HIV. AIDS and Behavior. 2006;10:451-461. 3. Duru OK, Collins RL, Ciccarone DH, et al. Correlates of sex without serostatus disclosure among a national probability sample of HIV patients. AIDS and Behavior. 2006;10:495-507. 4. Simoni JM, Pantalone D. Secrets and safety in the age of AIDS: does HIV disclosure lead to safer sex? Topics in HIV Medicine. 2004;12:109-118. 5. Parsons JT, Schrimshaw EW, Bimbi DS, et al. Consistent, inconsistent, and non-disclosure to casual sex partners among HIV-seropositive gay and bisexual men. AIDS. 2005;19:S87-S97. 6. Crepaz N, Marks G. Serostatus disclosure, sexual communication and safer sex in HIV-positive men. AIDS Care. 2003;15:379-387. 7. Klitzman R, Exner T, Correale J, et al. It’s not just what you say: Relationships of HIV dislosure and risk reduction among MSM in the post-HAART era. AIDS Care. 2007;19:749-756. 8. Parsons JT, VanOra J, Missildine W, et al. Positive and negative consequences of HIV disclosure among seropositive injection drug users. AIDS Education and Prevention. 2004;16:459-475. 9. Zea MC, Reisen CA, Poppen PJ, et al. Disclosure of HIV status and psychological well-being among Latino gay and bisexual men. AIDS and Behavior. 2005;9:15-26. 10. Stirratt MJ, Remien RH, Smith A, et al. The role of HIV serostatus disclosure in antiretroviral medication adherence. AIDS and Behavior. 2006;10:483-493. 11. Klitzman RL, Kirshenbaum SB, Dodge B, et al. Intricacies and inter-relationships between HIV disclosure and HAART: a qualitative study. AIDS Care. 2004;16:628-640. 12. Kalichman SC, DiMarco M, Austin J, et al. Stress, social support, and HIV-status disclosure to family and friends among HIV-positive men and women. Journal of Behavioral Medicine. 2003;26:315-332. 13. Cairns G. New directions in HIV prevention: serosorting and universal testing. IAPAC Monthly. February 2006:42-45. 14. MacKellar DA, Valleroy LA, Behel S, et al. Unintentional HIV exposures from young men who have sex with men who disclose being HIV-negative. AIDS. 2006;20:1637-1644. 15. Pilcher CD, Eron JJ, Galvin S, et al. Acute HIV revisited: new opportunities for treatment and prevention. Journal of Clinical Investigation. 2004;113:937-945. 16. The Healthy Living Project Team. Effects of a behavioral intervention to reduce risk of transmission among people living with HIV: the Healthy Living Project randomized controlled study. Journal of AIDS. 2006; 44:213-221. 17. Kalichman SC, Rompa D, Cage M, et al. Effectiveness of an intervention to reduce HIV transmission risks in HIV-positive people. American Journal of Preventive Medicine. 2001;21: 84-92. Program information 18. hivdisclosure.com All websites accessed July 2007.

Prepared by Robert H. Remien and Mark Bradley HIV Center for Clinical & Behavioral Studies, NY State Psychiatric Institute and Columbia University July 2007. Fact Sheet #64E Special thanks to the following reviewers of this fact sheet: Mark Cichocki, Joe Imbriani, Phebe Lam, Jennifer Lewis, Bradford McIntyre, Bob Munk, Michael Paquette, Tom Patterson, Steve Pinkerton, Jane Simoni, Jef St De Lore, David Vance, John K. Williams. Reproduction of this text is encouraged; however, copies may not be sold, and the University of California San Francisco should be cited as the source. Fact Sheets are also available in Spanish. To receive Fact Sheets via e-mail, send an e-mail to [email protected] with the message “subscribe CAPSFS first name last name.” ©July 2007, University of CA.

Resource

Latino gay men in the US

What are the HIV prevention needs of Latino gay men in the US?

Fact Sheet 28, March 2012

Why focus on Latino gay men?

The ever changing mosaic of Latino demographics in the US creates unique challenges to address health disparities of the population, especially when it comes to HIV prevention needs.  Latinos are the largest and fastest growing ethnoracial minority group in the US, experiencing a 43% growth between 2000 and 20101. Data also show that Latinos are one of the fastest growing populations at risk for HIV transmission:

  • Latino men who have sex with men (MSM*) represent 81% of new infections among Latino men, and 19% among all MSM2,3
  • Latinos are 16% of the US population, but make up 17% of living HIV/ AIDS cases and 20% of new HIV infections each year3
  • Youth (ages 13-29) accounted for 45% of new HIV infections among Latino MSM4

In light of these data there is a need to identify culturally-specific health concerns of Latino gay men so that effective interventions may be developed to address current and prevent future disparities. The US National HIV/AIDS Strategy highlights the call for HIV programs that reduce health inequities among both ethnoracial and sexual minority populations5.  Latino gay men have distinct cross-cultural identities that place them into both prioritized categories6.

What are the prevention challenges?

Most work related to Latino gay men has been based on a sociocultural model of health, which shows that experiences of social discrimination, defined as racism, homophobia and poverty, are strong predictors of mental health outcomes7. Mental health outcomes, such as psychological distress, have been shown to increase sexual risk and decrease sexual resiliency. A recent study of Latino MSM living in New York and Los Angeles8 reported that:

  • Over 40% of the participants reported experiences of both racism and homophobia in the past year
  • Low self-esteem and decreased levels of social support among Latino gay men are associated with increased rates of sexual risk behaviors, including unprotected anal sex
  • Men who had both homophobic and racist experiences were more likely than men who reported no form of discrimination to engage in unprotected anal sex as a bottom, and to also be binge drinkers

Late testing (that is, those individuals who have an AIDS diagnosis within one year of testing HIV-positive) and lack of access to health insurance also create challenges to prevention, treatment and care.

  • 38% of Latinos test late in their illness9.
  • In a study of 21 major US cities, 46% of Latino MSM who tested positive for HIV were unaware of their infection3.
  • HIV+ Latinos are more likely than Whites to postpone care due to issues such as lack of transportation, and more likely to delay initiation of care after their diagnosis9.
  • 24% of Latinos living with HIV/ AIDS are uninsured, compared to 17% of Whites; and only 23% of HIV+ Latinos have private health insurance, compared to 44% of Whites10.

Reviews of research with Latino gay and bisexual men also report that cultural influences and socioeconomic forces impact sexual well being. For example, residency status, HIV-related stigma, machismo, immigration and migration patterns, language, insurance status and educational attainment have all been associated barriers to HIV prevention services and programming11, 12

What other factors affect sexual risk and resiliency?

Latino gay men are often faced with unique socio-sexual situations that place them at risk for HIV transmission. Prior work with MSM populations, including Latino gay men, has documented that various factors are associated with sexual-risk:

  • Serosorting (choosing sexual partners based on perceived HIV status), seropositioning (choosing sexual roles [e.g., top or bottom] based on the perceived HIV status of each partner), and sexual stereotypes and preferences13
  • Alcohol and drug use (including methamphetamine and injection use), as well as having had a history of STDs, like syphilis and gonorrhea14,15
  • High rates of condomless anal sex (“barebacking”) and multiple partners16
  • Childhood sexual abuse and a social context of discrimination17

Defined as adopting cultural ways of mainstream society, work on acculturation suggests that: Latinos who are less acculturated to mainstream US culture are protected by traditional Latino (sexual) values; and that acculturation of US mainstream values serves as a protective barrier because it increases a sense of individualism and self-determination18 Understanding the role of sociocultural factors helps to refine definitions of sexual resiliency among Latino gay men. Innovative work exploring protective factors among Latino gay men notes that: HIV prevalence was higher among US born than non-US born Latinos in San Francisco, while in Chicago the opposite was true19

  • Community involvement moderates sexual risk behaviors20
  • Volunteering with HIV/ AIDS organizations can decrease psychological stressors20

As the majority of these data came from quantitative surveys, more public health focused qualitative studies are needed to further examine the context of the sexual situations in which Latino gay men find themselves, as well as the cultural factors and sexual scripts21 that influence their harm reduction behaviors.

What is being done?

  • Hermanos de Luna y Sol, born out of the Mission District in San Francisco, CA is a longstanding HIV prevention intervention for immigrant Spanish speaking Latino gay and bisexual men that is based on empowerment education and social support, and has been successful in increasing condom use among participants22.
  • Latinos D (based in Queens, NY23) and Somos Latinos Salud (based in Ft. Lauderdale, FL24) are dynamic and promising adaptations of the MPowerment program, an effective community-level, evidence-based HIV intervention for young gay and bisexual men25.
  • SOMOS, a homegrown and culturally responsive NYC-based HIV prevention program, has been shown to lower risk behaviors and decrease number of sexual partners among Latino gay men26.

Still, even with these programs and CDC recommendations to address Latino MSM health disparities, most adaptations of evidence-based interventions have largely been linguistically, but not necessarily culturally, translated versions of established programs.

What are the recommendations?

  • Celebrate the diversity of Latino cultures in programming. Different experiences of historical events, political environments, immigration patterns and regional cultures exist within Latino communities (e.g., Chicanos in Los Angeles, Nuyoricans in New York, Tejanos in San Antonio).
  • Conduct more research on structural and environmental influences on Latino gay men’s sexual health including issues relating to undocumented HIV+ Latinos.
  • Understand that serving populations is not the same as being culturally competent. Including Latino participation does not equate to providing appropriate services.
  • Cultivate Latino gay community collaboration and empowerment by ensuring that Latino gay men participate in local HIV prevention and care planning councils.
  • Develop programs that address the unique concerns of both immigrants and U.S. born Latino gay men. Assuming that all Latino gay men are monolingual Spanish speakers minimizes the needs of bicultural (but not necessarily bilingual) Latino gay men.
  • Reduce gay-related and HIV-related stigmas in Latino communities. Breaking sexual silences will help promote healthy sexual identity development.
  • Work with policy makers and political stakeholders to advocate for sustainable health care access.
  • Highlight social norms and cultural values that enhance sexual resiliency. Focusing solely on risk factors leads to limited insights and opportunities for interventions.
  • Foster programs that address the impact of isolation and identity validation. Lessening stressors that Latino gay men face will improve their overall well-being.

Says who?

1 US Census Bureau (2011).  Overview of Race and Hispanic Origin: 2010 – U.S. Census Bureau. 2 CDC. (2011). CDC Fact Sheet: HIV and AIDS among Latinos. https://www.cdc.gov/nchhstp/newsroom/docs/factsheets/Cdc-hiv-latinos-508.pdf. 3 CDC. (2008).  HIV Surveillance in Men Who Have Sex with Men (MSM). https://www.cdc.gov/hiv/group/msm/index.html. 4 Prejean J, et al. (2011). Estimated HIV Incidence in the United States, 2006-2009. PLoS ONE. 5 ONAP. (2010). National HIV/AIDS Strategy: Federal Implementation Plan. https://www.hiv.gov/federal-response/national-hiv-aids-strategy/federal-implementation#:~:text=The%20Federal%20Action%20Plan%20presents,within%203%20to%205%20years. 6 Diaz, RM (1998). Latino gay men and HIV: culture, sexuality, and risk behavior. Routledge. 7 Díaz RM, et al. (2001). The impact of homophobia, poverty, and racism on the mental health of gay and bisexual Latino men: findings from 3 US cities. Am J Public Health. 91(6):927-932. 8 Mizuno Y, et al. (2011). Homophobia and Racism Experienced by Latino Men Who Have Sex with Men in the United States: Correlates of Exposure and Associations with HIV Risk Behaviors. AIDS Behav. [Epub ahead of print] 9 CDC. (2011). HIV Surveillance Report, Vol. 21. 10 RAND. (2011). HIV Cost and Services Utilization Study (HCSUS). http://www.rand.org/health/projects/hcsus.html.\ 11 Zea MC, et al. (2004). Methodological issues in research on sexual behavior with Latino gay and bisexual men.  Am J Community Psychol. 31(3-4):281-291. 12 National Latino AIDS Awareness Day. HIV/ AIDS and Latino/ Hispanic men who have sex with men. 13 Rosenberg ES, et al. (2011). Number of casual male sexual partners and associated factors among men who have sex with men: results from the National HIV Behavioral Surveillance system. BMC Public Health. 25: 11-89. 14 CDC. (2010). HIV among Hispanics/ Latinos. https://www.cdc.gov/hiv/group/racialethnic/hispaniclatinos/index.html15 Balan IC, et al. (2009). Intentional Condomless Anal Intercourse Among Latino MSM Who Meet Sexual Partners on the Internet. AIDS Educ Prev. 21(1): 14-24. 16 Diaz RM et al. (2005). Reasons for stimulant use among Latino gay men in San Francisco: a comparison between methamphetamine and cocaine users. Journal of Urban Health. 82(Supp1): 71-78. 17 Arreola SG, et al. (2009). Childhood sexual abuse and the sociocultural context of sexual risk among adult Latino gay and bisexual men. Am J Pub Hlth. 99 Suppl 2:S432-8. 18 Abraído-Lanza AF, et al. (2005). Do healthy behaviors decline with greater acculturation? Implications for the Latino mortality paradox. Soc Sci Med. 61:1243–1255. 19 Ramirez-Valles J, et al. (2008) HIV Infection, Sexual Risk, and Substance Use among Latino Gay and Bisexual Men and Transgender Persons. American Journal of Public Health. 98: 1036-1042. 20 Ramirez-Valles J (2002). The proactive effects of community inolvment for HIV risk behavior: A conceptual framework. Health Education Research. 17(4): 389-403. 21 Carrillo H, et al. (2008). Risk across borders: Sexual contexts and HIV prevention challenges among Mexican gay and bisexual immigrant men. Findings and recommendations from the Trayectos Study (Monograph). San Francisco: UCSF and SFSU. 22 Hermanas de Luna y Sol.http://sfresourceconnect.org/detail.php?id=41275840  23 Latinos Diferentes. https://www.facebook.com/LatinosD. 24 Latinos Salud – Somos. http://www.latinossalud.org 25 Mpowerment. http://mpowerment.org. 26 Vega MY, et al. (2011). SOMOS: evaluation of an HIV prevention intervention for Latino gay men. Health Educ Res. 26(3):407-418.

Prepared by Gabriel R. Galindo DrPH, UCSF Center for AIDS Prevention Studies Fact Sheet 28, March 2012 Special thanks to the following reviewers of this Fact Sheet: Ana F. Abraido-Lanza, Sonya Arreola, Maricarmen Arjona, George Ayala, Alida Bouris, Hector Carrillo, Rafael Diaz, Lizette Rivera, Ramon Ramirez and Jesus Ramirez-Valles.

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 Prevention Information Network at 800/458-5231. Comments and questions about this Fact Sheet may be e-mailed to [email protected]. © July 2012, University of California

Resource

Personas mayores de 50

¿Qué necesitan las personas mayores de 50 en la prevención del VIH?

¿están a riesgo las personas mayores?

Sí. En los EEUU más del 10% de todos los nuevos casos de SIDA ocurren entre personas mayores de 50 años.1 En los últimos años, los nuevos casos de SIDA aumentaron más rápido entre personas de edad mediana y mayores que en personas menores de 40.2 Si bien es cierto que muchas de estas personas con SIDA quedaron infectadas con el VIH a una edad más temprana, muchos se infectaron después de los 50. Es difícil determinar los índices de infección con VIH entre personas mayores, ya que son pocas las personas mayores de 50 a riesgo de contraer el VIH que se hacen la prueba de detección rutinariamente.3 A la mayoría de las personas mayores se les diagnostica el VIH a un estado muy avanzado de la enfermedad-cuando andan en búsqueda de algún tratamiento a causa de las enfermedades ocasionadas por el VIH.1 Los casos de SIDA en personas mayores pueden no estar siendo reportados ya que los síntomas y las infecciones del VIH pueden coincidir con otras enfermedades relacionadas con la edad por lo tanto pasa desapercibida. La demencia ocasionada por el SIDA es muchas veces diagnosticada como el mal de Alzheimer, y los primeros síntomas del VIH coma la fatiga y la pérdida de peso pueden estar siendo interpretadas como el proceso natural del envejecimiento.4 Las personas mayores con SIDA se enferman y mueren más rápido que las más jóvenes. Esto se debe al diagnóstico tardío del SIDA y a la combinación de infecciones y otras enfermedades que posiblemente aceleran la progresión del SIDA. Además, las nuevas medicinas para tratar el VIH pueden interferir con el tratamiento médico de enfermedades crónicas previas.

¿qué los pone a riesgo?

Una de las falsas creencias más comunes en los EEUU es que las personas mayores ni tienen sexo ni usan drogas. Muy pocas campañas de prevención son dirigidas a personas mayores, y en la mayoría de los anuncios con mensajes educativos no aparecen personas mayores, lo cual les convierte en una población a riesgo e invisible.6 Esto ocasiona que las personas mayores estén generalmente menos informadas sobre el VIH que los más jóvenes y menos conscientes de como protegerse a si mismos de la infección. Esto es más real entre personas mayores usuarios de drogas inyectadas, los cuales componen el 16% de los casos de SIDA en mayores de 50 años. El mayor grupo de casos de SIDA entre personas mayores de 50 ocurre en hombres que tienen sexo con hombres. Los hombres gay/homosexuales mayores tienden a ser un grupo invisible dentro de esta comunidad y en los esfuerzos de prevención. Dentro de los factores que presentan los gay/ homosexuales mayores están: la arraigada homofobia, la negación del riesgo, el uso del alcohol y otras drogas, y los encuentros sexuales anónimos. 7 Las mujeres componen un mayor porcentaje de casos de SIDA a medida que aumenta la edad. A pesar de que solo el 6,1% de los casos de SIDA ocurre en mujeres de 50 a 59 años, el porcentaje se eleva a 13,2% en las de 60 a 69 años y a 28,7% en las mayores de 65 años de edad.8 Los cambios normales que aparecen con la edad tales como la falta de lubricación vaginal y el desgaste de las paredes vaginales pueden estar poniendo a mayor riesgo de infección con VIH a las mujeres mayores durante las relaciones sexuales.9

¿cuáles son las barreras en la prevención?

Pocos norteamericanos mayores de 50 a riesgo de contraer el VIH usan condones o se hacen la prueba de detección del VIH. En una encuesta a nivel nacional, de las personas mayores a riesgo de infectarse con VIH, un sexto estaba tan propenso a usar condones y un quinto a hacerse la prueba del VIH, que las personas de 20 a 30 años a riesgo de infección.3 Se desconocen los factores que influyen en el uso del condón en personas mayores. Pocas veces doctores y enfermeras consideran al VIH un riesgo entre pacientes mayores. Un estudio hecho a doctores, reveló que la gran mayoría de estos “raras veces” o “nunca” hacían preguntas sobre VIH/SIDA o discutían el tema de la reducción del riesgo con pacientes mayores de 50. Los doctores estuvieron mucho más propensos a “raras veces” o “nunca” preguntar a sus pacientes mayores de 50 sobre el factor de riesgo con relación al VIH (40%) que a pacientes menores de 30 (6.8%).10

¿en qué se diferencian?

Es necesario tomar en cuenta el aspecto cultural y generacional al diseñar campañas de prevención. A las personas mayores les puede resultar muy incómodo revelar a otros información sobre su comportamiento sexual o su uso de drogas. Esto puede interferir con la participación de personas mayores en grupos de apoyo.11 Además, las personas mayores pueden creer que el condón ni es importante ni necesario, especialmente si la mujer ya pasó la etapa de la menopausia cuando ya no hay necesidad de protegerse para evitar un embarazo. Es posible que a estas personas les queden pocos amigos y que el círculo social que pudiera ofrecerles apoyo y cuidados sea reducido. Adicionalmente, es muy probable que ellos estén cuidando a otras personas, ya que cerca de un tercio de los pacientes con SIDA dependen de un familiar mayor para que les ayude en el aspecto económico, emocional y físico.12

¿qué se está haciendo?

El “Senior HIV Intervention Project (SHIP)” o “proyecto de intervención de VIH para mayores” en los condados de Dade, Broward y Palm Beach de la Florida capacita a personas mayores para hacer presentaciones de tipo educativo y conducir seminarios sobre sexo seguro en comunidades de jubilados. Estos educadores a su vez se reúnen con profesionales de la salud y trabajadores al servicio de personas mayores para informarles sobre el riesgo que este grupo encierra en cuanto al VIH.13 En seis centros para el cuidado de personas mayores de Chicago, Illinois, un programa utilizó “círculos de estudio”, los cuales fueron dirigidos por miembros del mismo grupo con el fin de alertar y aumentar el conocimiento sobre VIH entre los participantes. Los participantes presenciarion el video “The Forgotten Tenth” o “el 10% restante” e investigaron por cuenta propia como afecta el VIH en sus vidas: física política y economicamente. Luego compartieron lo aprendido en las reuniones subsecuentes. Al concluir el programa muchos de los participantes se convirtieron en educadores de SIDA.14 En la Florida se llevó a cabo un programma educativo sobre VIH en varios comedores para mayores. Basado en el “Modelo de Creencia de Salud”, el programa incluyó información básica y estadísticas sobre el VIH, instrucción sobre el uso del condón, información sobre las pruebas de detección, y el estudio de algunos casos de personas mayores con SIDA. Al final de esta sesión, los participantes reportaron un aumento en su conocimiento del SIDA y la susceptibilidad que estos perciben con respecto al VIH.15

¿qué queda por hacer?

Ha existido una falta notable de interés por las personas mayores de 50 en los esfuerzos de prevención. Es necesario crear programas de prevención exclusivos para gente mayor. Los medios de comunicación y los carteles de anuncios necesitan contener temas e imágenes que se identifiquen con las personas mayores de 50 y promover a su vez la prueba de detección del VIH rutinariamente en personas mayores que viven a riesgo de infección. Es necesario investigar más a fondo el comportamiento de estas personas en relación al sexo y al uso de drogas, la progresión de la enfermedad y los tratamientos, y reclutar a personas mayores VIH+ para los estudios clínicos. El personal clínico y los proveedores de servicio para personas mayores, incluyendo a los cuidantes y el personal de asilo de ancianos, deben recibir educación sobre los comportamientos de riesgo y los síntomas del VIH en personas mayores. El personal clínico además, debe asesorar el riesgo y el uso de drogas más cuidadosamente en pacientes mayores de 50 y no asumir que los pacientes no participan en este tipo de actividades o que no hablan de ello. Las personas mayores carecen del apoyo y la educación que les permitiría asegurarse una vida tan satisfactoria como la que tenían antes de pasar los 50 años. Un programa de prevención completo, utiliza muchos elementos para proteger del VIH a la mayor cantidad de gente posible. Los adultos mayores de 50 consituyen un grupo especial que debería recibir mensajes preventivos tanto por el riesgo ocasionado por las conductas de riesgo como por el papel de liderazgo y de maestros que estos desempeñan para futuras generaciones.

¿quién lo dice?

1. Centers for Disease Control and Prevention. HIV/AIDS Surveillance Report . 1996;8:15. 2. HIV, AIDS, and older adults . Fact sheet prepared by the National Institute on Aging, National Institutes of Health. 3. Stall R, Catania J. AIDS risk behaviors among late middle-aged and elderly Americans. The National AIDS Behavioral Surveys . Archives of Internal Medicine. 1994;154:57-63. 4. Whipple B, Scura KW. The overlooked epidemic: HIV in older adults . American Journal of Nursing. 1996;96:22-28. 5. Skiest DJ, Rubinstien E, Carley N, et al. The importance of comorbidity in HIV-infected patients over 55: a retrospective case-control study . American Journal of Medicine. 1996;101:605-611. 6. Feldman MD. Sex, AIDS, and the elderly . Archives of Internal Medicine. 1994;154:19-20. 7. Grossman AH. At risk, infected, and invisible: older gay men and HIV/AIDS . Journal of the Association of Nurses in AIDS Care. 1995;6:13-19. 8. Ship JA, Wolff A, Selik RM. Epidemiology of acquired immune deficiency syndrome in persons aged 50 years or older . Journal of Acquired Immune Deficiency Syndromes. 1991;4:84-88. 9. Catania JA, Turner H, Kegeles SM, et al. Older Americans and AIDS: transmission risks and primary prevention research needs . Gerontologist. 1989;29:373-381. 10. Skiest DJ, Keiser P. Human immunodeficiency virus infection in patients older than 50 years. A survey of primary care physicians’ beliefs, practices, and knowledge . Archives of Family Medicine. 1997;6:289-294. 11. Nokes K, ed. HIV/AIDS and the older adult . Washington DC: Taylor & Francis;1996. 12. Ory MG, Zablotsky D. Notes for the future: research, prevention, care, public policy. In MW Riley, MG Ory, D Zablotsky, eds. AIDS In an Aging Society. New York, NY: Springer Publishing; 1989. 13. Senior HIV Intervention Project (SHIP). Contact: Lisa Agate (954) 467-4774. 14. Dill D, Huston W. AIDS education for older adults. Healthpro UIC. 1996;Fall:18-19. Contact: Rita Strombeck, HealthCare Education Associates (760) 323-4032. 15. Rose MA. Effect of an AIDS education program for older adults . Journal of Community Health Nursing. 1996;13:141-148. Contact: Molly Rose (215) 503-7567. Recursos: NY HIV Over 50 Task Force, Brookdale Center on Aging, Hunter College, 425 E 25th Street, New York, NY 10010, (212) 481-7594. Contact: Kathy Nokes,[email protected] American Association of Retired Persons (AARP), Social Outreach and Support (SOS), 601 E Street, NW, Washington, DC 20049, (202) 434-2260,http://www.aarp.org National Association on HIV Over Fifty (NAHOF), Midwest AIDS Training & Education Center, University of Illinois, 808 S. Wood Street m/c 779, Chicago. IL 60612, (312) 996-1426, [email protected] National Institute on Aging, https://www.ioaging.org/

Preparado por Pamela DeCarlo*, Nathan Linsk, PhD**, Traducción Romy Benard-Rodríguez* *CAPS, **National Association on HIV Over 50, Midwest AIDS Training & Education Center Abril 1998. Hoja Informativa 29S.

Resource

What works in HIV prevention

We Know What Works in HIV Prevention -Why Aren’t We Doing More of It?

What have we learned?

Fifteen years ago, the first AIDS cases were diagnosed among 5 gay men in Los Angeles, CA. Since then, AIDS has spread to over half a million people in the US and is the leading cause of death for all Americans aged 25-44. Fifteen years have also seen great leaps in understanding how to prevent the spread of HIV. But these fifteen years have not seen the widespread implementation of effective HIV prevention programs in the US. If we know what works, why aren’t we doing more of it? HIV prevention does not have to be perfect to be effective. Epidemiological models have shown that simply cutting rates of risky behavior in half can halt the epidemic.1 The programs listed below are some of the interventions that have shown signs of success and should be replicated, even without 100% reduction in risk behavior.

What has shown signs of working?

The majority of the estimated 41,000 annual new HIV infections in the US are occurring among injection drug users (IDUs), their sexual partners, and their offspring.2 We know what works to prevent the spread of HIV among IDUs: starting HIV prevention efforts when rates of HIV are still low, providing sterile injecting equipment through needle exchange programs and over-the-counter pharmacy sales, conducting community outreach to IDUs, and providing drug treatment on demand.3 In Tacoma, WA, where prevention efforts for IDUs began in 1988, the prevalence of HIV among IDUs has remained steady at 3-4%. In New York City, NY, where prevention efforts for IDUs met with early opposition, HIV among IDUs increased from 10% to more than 50% in five years.3 Connecticut implemented the ideal HIV prevention program: it cost the state nothing and was highly effective. A partial repeal of needle prescription and drug paraphernalia laws resulted in dramatic reductions in needle sharing, and increases in pharmacy purchase of syringes by IDUs. Sharing dropped from 52% to 31% after the new laws, pharmacy purchase rose from 19% to 78%, and street purchase fell from 74% to 28%.4 Gay and bisexual men account for a majority of total current HIV infections, and 25% of annual new infections in the US.2 We know what intervention strategies work for gay and bisexual men: small group counseling and skills training, peer outreach, counseling and testing, hot lines, media programs, and community interventions. One effective program in several medium-sized towns trained the most popular people in social settings to deliver AIDS risk-reduction messages to friends and acquaintances in gay bars. As a result, fewer gay men practiced unprotected sex.5 Another successful program promoted a norm for safer sex among young gay men through a variety of social, outreach and small group activities such as dances, picnics, and volleyball games. As a result, rates of unprotected intercourse dropped from 40% to 31%.6 One fourth of all new HIV infections in the US occur in young people under the age of 22. We know what works for adolescents: effective sex education programs in schools. Although the popular belief is that teaching kids about sex will lead to promiscuity, in fact, the opposite is true. A comprehensive review of 23 school-based programs found that teens who received specific AIDS education were less likely to engage in sex, and those who did were more likely to have sex less often and use contraception.7 Sex education is most effective when it is begun before students have initiated sexual activity. A program in Oakland, CA, used peer educators to teach seventh graders about sexuality and HIV/AIDS. After one year, students in the program were less likely to initiate activities such as deep kissing, genital touching, and sexual intercourse.8 Voluntary HIV testing and treatment with AZT for HIV-positive pregnant women reduced the risk of maternal-fetal HIV transmission by two-thirds in clinical trials.9 Long-term effects on mother and child have yet to be determined.

How is prevention being held back?

The US government still bans the use of federal funds for needle exchange programs, even though six government-sponsored reports have shown that those programs help stop the spread of HIV and do not lead to increased drug use. Similarly, ten states and the District of Columbia still have laws requiring a doctor’s prescription to buy a syringe, even though four government-sponsored studies have recommended repealing those laws.10 Meanwhile, drug treatment centers frequently have long waiting lists, and fewer than 15% of IDUs in the US are in treatment at any given time.11 In recent years, many states have passed laws that restrict sex education. For example, eight states require or recommend teaching that homosexuality is not an acceptable lifestyle, even though gay teens are at highest risk for HIV and most in need of education. Twenty-six states require abstinence instruction, even though a review of abstinence programs showed no proof of effectiveness in delaying the onset of intercourse.7 Only 14 of the 26 states also require sex education curricula to include information on contraception, sexually transmitted diseases and HIV.12 Funding for HIV prevention has not always flowed where it is most needed. For example, in California in 1991, gay and bisexual men accounted for 88% of all AIDS cases, yet received only 5% of total state spending on prevention.13 Success preventing maternal-fetal transmission has prompted the federal government to recommend universal counseling and voluntary HIV testing to all pregnant women. However, getting tested does not guarantee treatment if a women should test positive. A study of publicly funded HIV test sites found that almost half of all clients had no health insurance, and racial minorities were more likely to be uninsured.14 Lack of insurance may block many women from preventive services such as prenatal care. Prevention programs that have been evaluated and shown to be effective are sometimes perceived as too complicated or expensive to work “in the field.” Researchers and service providers can collaborate to better understand how to adapt effective programs to different populations, and to determine the cost-effectiveness of programs.

What can we do?

The federal government needs to repeal the ban on funding for needle exchange programs. State governments need to repeal needle prescription and paraphernalia laws. Federal and state governments need to dramatically increase methadone maintenance programs, as well as drug treatment programs for cocaine and crack. State governments should pass laws requiring all children to receive explicit and age-appropriate sexuality, drug, and HIV/AIDS education in schools that includes discussions of homosexuality and contraception. State health departments and their Community Planning groups need to prioritize funding for prevention programs that more accurately reflect the epidemiology of HIV in their communities. Highest priority should be given to programs for populations with the greatest need: IDUs in and out of treatment; gay and bisexual men who are young, substance users, and men of color; female partners of IDUs; and high-risk youth. The federal government needs to ensure early access to care and treatment for those who test positive. New medications and therapies can be prohibitively expensive for those without health insurance. Recent advances in HIV treatment can dramatically lower the amount of HIV virus during early phases of infection, which may reduce the risk of transmission. In the future, good HIV treatment may be key for HIV prevention. A comprehensive HIV prevention strategy uses many elements to protect as many people at risk for HIV as possible. Prevention does not have to be perfect to make a difference. We know what works in HIV prevention. We need to apply that knowledge more completely, more fairly, and more consistently. Prepared by Thomas J. Coates, PhD and Pamela DeCarlo

Says Who?

1. Blower SM, McLean AR. Prophylactic vaccines, risk behavior change, and the probability of eradicating HIV in San Francisco . Science. 1994;265:1451-1454. 2. Holmberg SD. The estimated prevalence and incidence of HIV in 96 large US metropolitan areas . American Journal of Public Health. 1996;86:642-654. 3. Des Jarlais DC, Hagan H, Friedman SR, et al. Maintaining low HIV seroprevalence in populations of injecting drug users . Journal of the American Medical Association. 1995;274:1226-1231.
  • Contact: Don Des Jarlais 212/387-3870 X3808.
4. Groseclose SL, Weinstein B, Jones TS, et al. Impact of increased legal access to needles and syringes on practices of injecting-drug users and police officers-Connecticut, 1992-1993 . Journal of Acquired Immune Deficiency Syndromes. 1995;10:82-89.
  • Contact: Beth Weinstein 203/509-7800.
5. Kelly JA, St. Lawrence JS, Stevenson LY, et al. Community AIDS/HIV risk reduction: the effects of endorsements by popular people in three cities . American Journal of Public Health. 1992;82:1483-1489.
  • Contact: Jeff Kelly 414/287-4680.
6. Hays RB, Rebchook, GM, Kegeles SM. The Mpowerment project: a community-level HIV prevention intervention for young gay and bisexual men . American Journal of Public Health. 1996;86:1-8.
  • Contact: Susan Kegeles 415/597-9159.
7. Kirby D, Short L, Collins J, et al. School-based programs to reduce sexual risk behaviors: a review of effectiveness. Public Health Reports. 1994;109:339-360. 8. Ekstrand ML, Siegel D, Nido V, et al. Peer-led AIDS prevention delays initiation of sexual behaviors among US junior high school students. Presented at 11th International Conference on AIDS, Vancouver, BC. 1996.
  • Contact: Maria Ekstrand 415/597-9160.
9. Connor EM, Sperling RS, Gelber R, et al. Reduction of maternal-infant transmission of human immunodeficiency virus type 1 with zidovudine treatment . New England Journal of Medicine. 1994;331:1173-1180. 10. Lurie P, Drucker E. An opportunity lost: estimating the number of HIV infections due to the US failure to adopt a national needle exchange policy. Presented at 11th International Conference on AIDS, Vancouver, BC. 1996. 11. Wiley J, Samuel M. Prevalence of HIV infection in the USA . AIDS. 1989;3(Suppl. 1):71-78. 12. Sexuality Education in America: A State-by-State Review. Report prepared by the NARAL Foundation. Washington, DC: 1995. 13. Lee PR, Franks P, Haynes-Sanstad K, et al. HIV Prevention in California: HIV Education and Prevention Evaluation. Report prepared for the Office of AIDS, California Department of Health Services, 1993. 14. Valdiserri RO, Gerber AR, Dillon BA, et al. Clients without health insurance at publicly funded HIV counseling and testing sites: implications for early intervention . Public Health Reports. 1995;110:47-52.
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 AIDS Clearinghouse at 800/458-5231. Comments and questions about this Fact Sheet may be e-mailed to [email protected]. ©1996, University of California
Resource

Evaluation

How does evaluation help in HIV prevention?

what is evaluation?

Most HIV prevention service providers conduct evaluation and data collection activities on a regular basis, although they may not consider it evaluation. Writing case notes during a prevention case management session, discussing client feedback on program services, watching needle exchange in action, taking notes at staff meetings: these are all examples of “informal” data collection that happen every day. The evaluation provides systems for collecting data and then helps providers make sense of the data they collect so that they can use it in their work. Evaluation can help providers increase their knowledge, better understand the populations they serve, improve programs, and make decisions. Evaluation is a way to identify program strengths and areas for improvement.1 It is a way for service providers to be responsible to the communities in which they work, to show accountability to funders, and to ensure that programs have the intended result. Evaluation can be integrated into all phases of planning and implementing an intervention:

  • Before (formative evaluation, needs assessment): To understand the context of the lives of community members and what puts them at risk, how they avoid risk, and what kinds of resources they need to reduce risk and maintain health and wellness. This can help shape the program and provide baseline data to help measure any change.
  • During (process monitoring and evaluation, quality assurance): To find out what actually occurs in practice and if the program is operating as planned; document interactions with participants; discover which components work best and if the program meets the needs of the participants. This can help develop any changes to the program.
  • After (outcome and impact evaluation): To determine what, if any, effect (short and long-term) the program has had on the participants, their partners/families, program staff, and the community. At this time, program staff can reassess their objectives and use findings to further refine their programs.

why do evaluation?

Evaluation can help agencies work more efficiently and improve their programs. It is not a substitute for staff and providers’ experience and knowledge but can offer complementary information. Using systematic data collection to design an intervention or program can help agencies make smart choices about what elements to incorporate and what behaviors, influences, and life issues to address.1 Evaluation can help agencies successfully compete for funds and be precise in seeking funding. Funders often require agencies to show that they have systematically thought through current and proposed interventions.2 Evaluation can also help agency staff know exactly what services best serve their program participants so that they don’t respond to all grant proposals, but only ones that specifically relate to their participants’ needs.1

what’s a good evaluation question?

Good evaluation questions come from well-written program objectives that are both realistic and measurable. When agencies design program activities based on the desired outcome (example: conduct outreach—increase the number of women tested for HIV), forming an evaluation is much easier.3 It is hard to evaluate programs that lack direction. The mark of a good evaluation question is that you care about the answer. Is it more helpful to know the number of condoms handed out in a month, or what clients do with the condoms after they take them? A good question should also be answerable. Many agencies may want to know if their programs are effective, but broad questions like that may require more time, money, and staff than are possible. For example, instead of asking, “Has our agency lowered HIV rates among gay men?” a more helpful and more easily answerable question might be, “Have the men who attended our living room discussion program reduced their use of methamphetamine or increased their use of condoms?”

what are perceptions of evaluation?

A common perception of evaluation is that it is only used by funders to pass judgment, to “prove” that a program worked or failed. It is no wonder that many agencies are wary of the idea of evaluation.4,5 Yet evaluation is a way for providers to know for themselves what works, what doesn’t work, what adjustments might improve their program, and whether what they are doing makes a difference for their clients and community. Another perception of evaluation is that it is often “done to” an agency. However, evaluation can be incorporated into regular program planning and all agency members can be active participants. This strengthens the process and ensures that results will be understood and used. Evaluators, front line staff, representative community members or program participants should be included in all phases: designing evaluation questions, reviewing forms or guides, discussing results, and brainstorming action points.6

how is an evaluation conducted?

There are many ways for agencies to conduct the evaluation. One way is to train staff in evaluation or hire an internal staff person with experience doing research to be in charge of evaluation and data. This approach may work best at a large agency with many resources. For example, AIDS Project Los Angeles’s evaluation team worked with their Commercial Sex Venues (CSV) initiative to design and evaluate risk-reduction activities in nine CSVs in Los Angeles County. Program and evaluation staff collaboratively developed and implemented formative research, pre/post evaluations, outreach forms, program evaluation and an annual needs assessment of patrons. CSV patrons reported decreased unprotected sex in CSVs at a one-year follow-up.7 Another example is for an agency to hire an external evaluator either for a one-time or ongoing evaluation. This approach can be less expensive than hiring a staff person, can build agency capacity to conduct some aspects of evaluation internally, and may be perceived by funders as having less bias than an internal evaluator. Agencies have had both positive and negative experiences with external evaluators. These evaluations are more likely to be successful when there is a strong partnership; agreement about roles, responsibilities, and expectations; and a dedication to collaboration between the evaluator and the agency. When hiring an evaluator, agencies can look for someone with a history of successful collaboration, extensive skills and experience with evaluation in a service setting, and knowledge or experience with the program population.8 A third example is for an agency and a local evaluator to work collaboratively to develop evaluation approaches and build agency capacity. Chicago HIV Prevention and Adolescent Mental Health Project (CHAMP), is a long-term collaboration between researchers at the University of Chicago and parents, schools, and community agencies. Together, they have designed, implemented, and evaluated an HIV prevention program for Black youth and families. The collaboration began in 1995 and continues today.9 As HIV prevention service providers have become more involved in the evaluation, technical assistance, and capacity building assistance (CBA) programs for providers have increased. The Centers for Disease Control and Prevention (CDC) has funded capacity building that integrates program planning, monitoring, and evaluation activities in agencies. A national network of CBA providers builds organizational, HIV prevention program and evaluation capacity in agencies that serve Asian & Pacific Islanders, Latino/as, American Indians/Alaska Natives, and African Americans.10

what still needs to be done?

Without specific time and money set aside, evaluation can get lost in the crisis-oriented world of client services. Agencies should be encouraged to foster an atmosphere of learning along with service provision. Agencies can write evaluation time into job descriptions and allow time for staff to read and discuss what they’ve learned in regular meetings. Funders need to cover all costs related to evaluation so that it can be appropriately staffed. Often-overlooked costs include staff time and training, data entry, data analysis, write-up of findings, and dissemination costs. Making sure that evaluation findings are shared is crucial. Agency staff needs to write about their findings and present them at regional and national conferences. Funders need to share reports with agencies and other funders and synthesize the lessons learned for all their grantees. Health departments can organize regional report-backs and encourage networking among agencies with similar evaluation needs.

Says who?

1. Gandelman AA, DeSantis LM, Rietmeijer CA. Assessing community needs and agency capacity—an integral part of implementing effective evidence-based interventions. AIDS Education and Prevention. 2006;18:32-43. 2. Holtgrave DR, Gilliam A, Gentry D et al. Evaluating HIV prevention efforts to reduce new infections and ensure accountability. AIDS Education and Prevention. 2002;14SA:1- 3. Nu’Man J, King W, Bhalakia A, et al. A framework for building organizational capacity integrating planning, monitoring, and evaluation. Journal of Public Health Management and Practice. 2007;Suppl:S24-32. 4. Kegeles SM, Rebchook GM. Challenges and facilitators to building program evaluation capacity among community-based organizations. AIDS Education and Prevention. 2005;17:284-299. 5. Napp D, Gibbs D, Jolly D, et al. Evaluation barriers and facilitators among community-based HIV prevention programs. AIDS Education and Prevention. 2002;14:38-48. 6. Gilliam A, Davis D, Barrington T, et al. The value of engaging stakeholders in planning and implementing evaluations. AIDS Education and Prevention. 2002;14:5-17. 7. Mutchler M, Colemon L. A model for community-based participatory evaluation: Benefits, challenges, and lessons of evaluating HIV prevention in commercial sex venues. Presented at the 2005 Nat’l HIV Prevention Conf, Atlanta, GA. #M3-D0601. 8. Center for AIDS Prevention Studies. Working Together: A Guide to Collaborative Research in HIV Prevention. 2001. 9. Baptiste DR, Paikoff RL, McKay MM, et al. Collaborating with an urban community to develop an HIV and AIDS prevention program for black youth and families. Behavior Modification. 2005;29:370-416. 10. Taveras S, Duncan T, Gentry D, et al. The evolution of the CDC HIV Prevention Capacity-building Assistance Initiative. Journal of Public Health Management & Practice. 2007;13S:S8-S15.

Evaluation resources:

Manuals

  • Good Questions, Better Answers: A Formative Research Handbook
  • Program Evaluation, NMAC

Researchers

  • Behavioral and Social Science Volunteer Program (BSSV)

Training

  • STD/HIV Prevention Training Centers

Tools

  • AETC National Evaluation Center
  • American Evaluation Association
  • CDC Program Evaluation Resources
  • The Community Toolbox
  • Virtual Program Evaluation Consultant (VPEC)

*All websites accessed 10/2007

Prepared by Dara Coan,* Oscar Macias,* Janet Myers,** Kevin Khamarko*** *San Francisco Public Health Department, **CAPS, ***AETC Evaluation Center December 2007. Fact Sheet #44ER Special thanks to the following reviewers of this fact sheet: Carl Bell, Alice Gandelman, Ellen Goldstein, Carol Kong, Gene Shelley, Stacy Vogan, Duane Wilkerson. Reproduction of this text is encouraged; however, copies may not be sold, and the University of California San Francisco should be cited as the source. Fact Sheets are also available in Spanish. To receive Fact Sheets via e-mail, send an e-mail to [email protected] with the message “subscribe CAPSFS first name last name.” ©December 2007, University of CA.