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Levels of prevention

How does HIV prevention work on different levels?

what are levels?

HIV prevention is not just about changing individual behavior. Many other factors also influence HIV transmission, such as relationships with family and friends, community norms, access to health care and local laws. Working on different levels means addressing all these factors through multiple approaches: individual, couple/family, community, medical and legal.¹ HIV prevention programs for injecting drug users (IDUs) in the US have included interventions on many different levels. These programs have incorporated interventions such as: intensive street outreach to educate IDUs, drug treatment, syringe exchange, community-building and empowerment efforts and adherence programs for HIV+ IDUs. Where these efforts are in place, rates of HIV among IDUs have remained stable.¹ Prevention efforts addressing multiple levels have reversed HIV epidemics in Uganda and Thailand, and averted an epidemic in Senegal. Senegal, for example, used prevention programs on the individual level (HIV counseling and testing), community level (HIV education in schools, condom promotion among sex workers), medical level (treatment of sexually transmitted diseases [STDs]), and structural/political level (mobilizing religious and political leaders to talk openly about HIV) to maintain one of the lowest rates of HIV infection in Sub-Saharan Africa.³

individual level

Many prevention programs help individuals change risky behavior. Project EXPLORE was a randomized trial of an individually-based counseling intervention for men who have sex with men. EXPLORE recognized that different men experience different individual, interpersonal and situational factors associated with risk. The program tailored the intervention to each man’s needs. Ten counseling modules used motivational interviewing to assess risk behavior, enhance sexual communication, understand substance use and recognize triggers to unsafe sex.⁴ Project RESPECT was a randomized HIV counseling trial conducted at STD clinics in five cities in the US with high HIV seroprevalence. The program evaluated whether interactive counseling is more effective than informational messages in reducing risk behaviors and preventing HIV and other STDs. The program found relatively little difference between 4- and 2-session interactive counseling interventions, but found lower rates of new STDs among the interactive counseling groups compared to groups that only received information. Reported condom use increased in all groups, with significantly greater protection among those in interactive counseling.⁵

couple/family level

The Visiting Nurse Service of New York offers comprehensive in-home services to families affected by HIV, substance abuse, sexual abuse and mental illness. The children in these families are at high risk for repeating the histories and behaviors of their parents. The program provides home-based interventions that include play therapy, health and safe sex education, family and individual counseling, relapse prevention for the parent and drug awareness and prevention for the children. Helping children deal with anger and resentment towards their parents lessens the likelihood that their anger will be displaced on themselves, thus repeating the behavior of the parent. Supporting each family member is key to breaking the cycle of dysfunction in these families.⁶ Interventions that promote safer sexual behaviors for both members of a couple can also be important. Project Connect was a six-session relationship-based intervention for women in a heterosexual relationship. Women attended separately or with their partners. The sessions emphasized communication, negotiation and how gender roles affect relationship dynamics. Project Connect helped decrease risky behaviors for couples receiving the intervention together and for couples where the woman attended alone.⁷

community level

Community-level programs can reach large numbers of people and can therefore be cost-effective. The Mpowerment Project promoted a norm of safer sex among young gay men through a variety of social, outreach and small group activities designed and run by young men themselves. They found that young men engaging in unsafe sex who were unlikely to attend workshops were more likely to be reached through outreach activities such as dances, movie nights, picnics and volleyball games. Rates of unprotected anal intercourse fell from 40% to 31% after the intervention.⁸ A community-level intervention with ethnically-diverse adolescents living in low-income housing, uses skills training, modeling, peer norm and social reinforcement to reduce sexual risk. Using social events and peer leaders nominated for training and team building, the program attracted neighborhood youth. The peer leaders developed small media prevention messages and planned community-wide events. Workshops for parents were also offered. The community intervention was shown to be more effective in delaying onset of first intercourse than education or skills building only.⁹

medical level

In the past few years, various medical approaches have been shown to be effective in HIV prevention. For example, antiretroviral drugs used to treat HIV have also been used to help prevent mother to child transmission (MTCT) of HIV, and to prevent transmission after accidental exposures (post-exposure prophylaxis or PEP). Neither of these approaches completely prevents transmission, but MTCT can reduce the risk of transmission by one half to two-thirds. Similarly, because antiretroviral drugs can greatly reduce the viral load in HIV+ persons, it is possible that widespread use could decrease the sexual transmission of HIV.³ Children’s Hospital Los Angeles teamed with community-based prevention organizations to provide an integrated care model for youth with and at high risk for HIV infection. The model offered a general medical clinic for youth and psychosocial services such as counseling and case management. Peer educators also conducted extensive street outreach where high-risk youth congregate. The program developed a computerized referral system for local youth services available on the Internet.¹¹

policy/legal level

HIV infection is closely linked to and often fueled by structural factors such as poverty, discrimination and lack of power for women. The Center for Young Women’s Development is a peer-run organization in San Francisco, CA that promotes self-sufficiency, community safety and youth advocacy among young women aged 14-18 who are involved in the juvenile justice, foster care systems and/or have lived on the streets. The Center provides employment, leadership and training for young women to educate others in their community. Equipped with the knowledge and opportunity to train others, young women are more likely to incorporate these skills into their own lives.¹² Political and legislative factors can also hamper HIV prevention. For example, there is currently a ban on federal funding for needle exchange programs in the US. Connecticut addressed the problem of access to clean needles through a program that 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. Needle sharing dropped from 52% before the new laws to 31% after implementation, street purchase fell from 74% to 28%, and pharmacy purchase rose from 19% to 78%.¹³

what have we learned?

Prevention is more than a single program or intervention. A comprehensive HIV prevention strategy addresses multiple levels to protect as many people at risk for HIV as possible. We should learn from and promote the effectiveness of HIV prevention programs already in place, as well as continue to evaluate these programs.

Says who?

1. Kelly JA, Kalichman SC. Behavioral research in HIV/AIDS primary and secondary prevention: recent advances and future directions. Journal of Consulting and Clinical Psychology. 2002;70:629-639. 2. Vlahov D, Des Jarlais DC, Goosby E, et al. Needle exchange programs for the prevention of human immunodeficiency virus infection: epidemiology and policy. American Journal of Epidemiology. 2001;154:S70-77. 3. Valdiserri RO, Ogden LL, McCray E. Accomplishments in HIV prevention science: implications for stemming the epidemic. Nature Medicine. 2003;9:881-886. 4. Chesney MA, Koblin BA, Barresi PJ, et al. An individually tailored intervention for HIV prevention: Baseline data from EXPLORE study. American Journal of Public Health. 2003;93:933-938. 5. Kamb ML, Fishbein M, Douglas JM Jr, et al. Efficacy of risk-reduction counseling to prevent human immunodeficiency virus and sexually transmitted diseases: a randomized controlled trial. Project RESPECT Study Group. Journal of the American Medical Association. 1998;280:1161-1167. 6. Mills R, Samuels KD, Bob-Semple N, et al. Breakin’ the cycle: multigenerational dysfunction in families affected with HIV/AIDS. Presented at the 14th International AIDS Conference, Barcelona, Spain. 2002. Abst #ThPeE7828. 7. El-Bassel N, Witte SS. Gilbert L, et al. The efficacy of a relationship-based HIV/STD prevention program for heterosexual couples. American Journal of Public Health. 2003;93:963-969. 8. Hays RB, Rebchook GM, Kegeles SM. The Mpowerment Project: community-building with young gay and bisexual men to prevent HIV1. American Journal of Community Psychology. 2003;31:301-312. 9. Sikkema KJ, Hoffmann RG, Brondino MJ, et al. Outcomes of a community-level intervention among adolescents in inner-city housing developments. Presented at the International Conference on AIDS, Barcelona, Spain. July 2002. Abst# WeOrD1276. 10. Fuchs J, Colfax G. A shot or a pill: exploring biomedical approaches to HIV prevention. Focus. 2004;19:1-4. 11. Schneir A, Kipke MD, Melchior LA, et al. Children’s Hospital Los Angeles: a model of integrated care for HIV-positive and very high risk youth. Journal of Adolescent Health. 1998;23(2Suppl):59-70. Computerized referral system:www.caars.net 12. Center for Young Women’s Development. www.cywd.org 13. 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.

Prepared by The Center for AIDS Prevention Studies, University of California, San Francisco July 2004. Fact Sheet #1ER 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]. © July 2004, University of California

Resource

Niveles de prevención

¿Cómo opera la prevención del VIH a diferentes niveles?

¿qué queremos decir con niveles?

La prevención del VIH no depende exclusivamente de lograr cambios en la conducta individual. Hay muchos otros factores que influyen en la transmisión del VIH como las relaciones entre familiares, entre amistades, los valores comunitarios, el acceso a servicios médicos y las leyes locales. Trabajar a diferentes niveles significa responder a todos estos factores por medio de estrategias múltiples: individual, de pareja/familia, comunitaria, médica y legal.¹ En EE. UU. los programas de prevención del VIH para usuarios de drogas inyectables (UDI) han incluido intervenciones a muchos niveles: campañas intensivas de educación para UDI en la calle, tratamiento para dejar las drogas, intercambio de jeringas, empoderamiento comunitario y programas de apego (adherencia) para UDI VIH+. Las localidades que cuentan con estos servicios tienen tasas estables de infección por VIH entre los UDI.² Los esfuerzos de prevención a varios niveles han invertido el curso de las epidemias del VIH en Uganda y Tailandia. También han evitado una epidemia en Senegal, en donde los programas preventivos a nivel individual (consejería y pruebas del VIH), comunitario (información en las escuelas, promoción del uso de condones entre trabajadores sexuales), médico (tratamiento de enfermedades de transmisión sexual, ETS) y estructural/político (movilización de dirigentes religiosos y políticos para hablar abiertamente sobre el VIH) han mantenido una de las tasas más bajas de infección por VIH en el África subsahariana.³

nivel individual

Muchos programas de prevención ayudan a los individuos a cambiar sus conductas riesgosas. El Proyecto EXPLORE fue un ensayo aleatorio de consejería individual para hombres que tienen sexo con hombres. EXPLORE reconoció que los factores individuales, interpersonales y situacionales asociados con el riesgo son diferentes para diferentes hombres. El programa individualizó la intervención adaptando los diez módulos de consejería motivacional para evaluar la conducta de riesgo, aumentar la comunicación sexual, entender el consumo de drogas y alcohol e identificar las situaciones que provocan el sexo desprotegido.⁴ El Proyecto RESPECT fue un ensayo aleatorio de consejería del VIH realizado en clínicas de ETS en cinco ciudades estadounidenses con alta seroprevalencia del VIH. El programa evaluó la eficacia de la consejería interactiva en comparación con los mensajes informativos para reducir las prácticas de riesgo y evitar el VIH y otras ETS. El programa descubrió relativamente poca diferencia entre las intervenciones de 2 y las de 4 sesiones de consejería interactiva, pero encontró tasas más bajas de ETS entre los grupos que recibieron consejería interactiva en comparación con otros grupos que sólo recibieron información. Todos los grupos reportaron un aumento en el uso de condones y quienes recibieron consejería interactiva mostraron notablemente tener una mayor protección.⁵

nivel de pareja/familiar

El Visiting Nurse Service de Nueva York ofrece servicios integrales a domicilio para familias afectadas por el VIH, las drogas, el alcohol, el abuso sexual y la enfermedad mental. Los niños de estas familias están en alto riesgo de repetir las historias y conductas de sus padres. El programa les ofrece intervenciones a domicilio que incluyen terapia del juego, educación sobre la salud y el sexo protegido, consejería familiar e individual, prevención de recaídas para los padres e información y prevención del consumo de drogas para los niños. Al ayudarles a afrontar sus sentimientos de ira y resentimiento hacia sus padres se reduce la probabilidad de que los niños dirijan la ira hacia sí mismos y repitan la conducta de sus padres. La clave para romper el ciclo de disfunción en estas familias es brindarle apoyo a cada miembro de la familia.⁶ Las intervenciones que promueven conductas con mayor protección sexual para ambos miembros de la pareja también pueden ser importantes. El Proyecto Connect fue una intervención basada en la relación heterosexual de pareja en la cual las mujeres asistieron a 6 sesiones con o sin sus compañeros. Las sesiones se enfocaron en la comunicación, la negociación y los efectos de los papeles masculinos y femeninos en la dinámica de pareja. El Proyecto Connect ayudó a disminuir las conductas riesgosas entre las parejas que participaron juntas en la intervención y en las que sólo asistió la mujer.⁷

nivel comunitario

Los programas a nivel comunitario pueden alcanzar a muchas personas y por lo tanto pueden ser costo-efectivos. El Proyecto Mpowerment promovió una norma de protección en el sexo entre jóvenes gay mediante diversas actividades (sociales, de alcance comunitario y en grupos pequeños) diseñadas y llevadas a cabo por los jóvenes mismos. Mpowerment notó que las actividades de promoción como bailes, noches de cine, días de campo y partidos de voleibol funcionaban mejor para alcanzar a los jóvenes que tenían sexo desprotegido y no asistían a charlas. La tasa de sexo anal sin protección cayó del 40% al 31% después de la intervención.⁸ Una intervención a nivel comunitario con adolescentes de diversos grupos étnicos que vivían en residencias para familias de bajos ingresos combinó el desarrollo de habilidades, el modelaje de comportamientos, las normas sociales entre jóvenes y el fortalecimiento social en la reducción del riesgo sexual. Para atraer a los jóvenes del vecindario, el programa los invitó a funciones sociales e involucró a líderes jóvenes que realizaron capacitaciones y fomentaron el trabajo en equipo. Los jóvenes lideres diseñaron breves mensajes de prevención para los medios de comunicación y organizaron eventos para toda la comunidad. También se ofrecieron talleres para los padres. La intervención comunitaria fue más eficaz para aplazar el primer coito que la educación o el desarrollo de habilidades por sí solos.⁹

nivel médico

En años recientes se ha comprobado la eficacia de varios métodos médicos de prevención del VIH.¹⁰ Por ejemplo, los medicamentos antirretrovirales (AR) usados para tratar el VIH también han ayudado a evitar la transmisión del VIH de madre a hijo (TMH) así como después de una exposición accidental (profilaxis posterior a la exposición, PPE). Ninguno de estos métodos impide la transmisión totalmente pero el uso de AR puede reducir el riesgo de la TMH a la mitad o dos terceras partes. De igual forma ya que los AR pueden reducir la carga viral en las personas VIH+ es posible que un uso más amplio disminuya la transmisión sexual del VIH.³ El Children’s Hospital de Los Ángeles colaboró con organizaciones comunitarias de prevención en un programa modelo con servicios integrados para jóvenes con VIH o en alto riesgo de contraerlo. Se les ofreció una clínica de medicina general para jóvenes junto con servicios psicosociales como consejería y manejo de casos. Educadores de pares también llevaron a cabo esfuerzos intensivos de contacto callejero. El programa creó un sistema computarizado de referencia con servicios locales para jóvenes disponible vía Internet.¹¹

nivel político/legal

La infección por VIH está muy vinculada a y con frecuencia es alimentada por factores estructurales como la pobreza, la discriminación y la falta de poder de las mujeres. El Center for Young Women’s Development es una organización dirigida por mujeres jóvenes en San Francisco, CA que promueve la autosuficiencia, la seguridad comunitaria y la defensa de los derechos de la gente joven entre jovencitas de 14-18 años de edad que han vivido en la calle o están involucradas en los sistemas de justicia juvenil o de crianza temporal. El centro provee empleo, oportunidades de liderazgo y capacitaciones para que las jóvenes eduquen a otros en su comunidad. Las jóvenes que obtienen estos conocimientos y la oportunidad de enseñarlos a otros están más propensas a incorporar dichas habilidades en su propia vida.¹² Los factores políticos y legislativos también pueden impedir la prevención del VIH. Por ejemplo, en EE.UU. se prohíbe el uso de fondos federales para programas de intercambio de jeringas. En Connecticut la falta de acceso a jeringas limpias se resolvió con un programa muy eficaz que no le costó nada al estado. Al revocar parcialmente las leyes que prohibían recetar jeringas y usar equipo de inyección de drogas, hubo reducciones dramáticas en el uso compartido de jeringas e incrementos en la compra en farmacias de jeringas por UDI. El uso de jeringas compartidas cayó del 52% antes de las nuevas leyes al 31% después de su entrada en vigor. Asimismo, la compra de jeringas en la calle se redujo del 74% al 28% y el porcentaje de jeringas compradas en farmacias aumentó del 19% al 78%.¹³

¿qué hemos aprendido?

La prevención va más allá de un solo programa o intervención. Una estrategia integral de prevención del VIH abarca varios niveles para proteger al mayor número posible de personas en riesgo. Debemos aprender de los programas actuales de prevención del VIH y fomentar su eficacia al tiempo que continuamos evaluándolos.

Quien lo dice?

Preparado por The Center for AIDS Prevention Studies, University of California, San Francisco Julio 2004. Fact Sheet #1SR

Resource

Research/service provider collaboration

How Can Service Providers and Researchers Collaborate in HIV Prevention?

Why collaborate?

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

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

What does collaboration involve?

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

What are barriers to collaboration?

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

What’s being done?

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

What are best practices?

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

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

What supports collaboration?

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

Says who?

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

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

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

Resource

Colaboración entre proveedores e investigadores

¿Cómo pueden colaborar los proveedores de servicio y los investigadores?

¿por qué colaborar?

“La investigación sobre la prevención del VIH-por muy buena que sea-no detiene la infección del VIH. La investigación del comportamiento sobre el VIH sólo puede detener la infección del VIH si sus resultados se utilizan en el mejoramiento de programas ya implementados.”¹ -Jeff Kelly

Toda persona que trabaja en el área de prevención de VIH quiere lograr disminuir la propagación del VIH. Cuando los investigadores y las agencias comunitarias (CBO por sus siglas en inglés) colaboran es posible mejorar los programas comunitarios, las investigaciones científicas y por consiguiente los esfuerzos de prevención del VIH. Para evaluar y realizar programas de prevención que sean útiles en las comunidades, los investigadores han de comprender cómo funcionan los programas de educación para la salud y de organización comunitaria, cómo tener acceso a las poblaciones que estudian (las mismas que atienden las CBO), y las maneras mas útiles de divulgación de resultados. Estos recursos se obtienen al colaborar con las CBO y pueden contribuir al mejoramiento de las investigaciones.² La misión de muchas CBO es impartir programas, no evaluarlos. Éstas podrían requerir de colaborar con investigadores al utilizar intervenciones ya comprobadas, evaluar programas en operación o para incorporar elementos teóricos en el diseño de una intervención. Trabajar con los investigadores puede ayudar a mejorar los programas.³ En EEUU los financiamientos federales, estatales, locales y privados requieren cada vez más que las CBO utilicen la teoría en el diseño de sus programas y que evaluen estos programas.

¿qué implica la colaboración?

Los investigadores y proveedores de servicio pueden trabajar juntos de muchas formas, y el grado de colaboración puede variar. La colaboración puede ser una acción simple y de corta duración, como ayudar a una CBO en la formulación de preguntas para una encuesta o cuando los investigadores quieren saber más sobre la población que las CBO sirven. Aún si la relación entre investigador y proveedor de servicios es limitada, hay maneras de combinar la experiencia y las habilidades de ambos y de optimizar los resultados del trabajo en conjunto. La colaboración también puede ser relativamente compleja y requerir de tiempo y recursos. Los proveedores de servicio y los investigadores pueden colaborar en la evaluación de programas, diseño de programas, y/o en el análisis datos. Generalmente, esta colaboración implica 1) seleccionar al colaborador (ya sea el investigador o la CBO); 2) crear la relación entre sí; 3) decidir qué se va a investigar (la pregunta de investigación); 4) conducir la investigación o la evaluación; 5) analizar e interpretar la información; 6) divulgar los resultados.⁴ El último paso en la colaboración podría implicar la creación de programas basados en los resultados de la investigación.

¿qué obstáculos enfrenta la colaboración?

La colaboración puede ser interpretada como el encuentro entre dos culturas: la cultura de la investigación y la de las CBO. Tanto investigadores como proveedores de servicio poseen culturas de trabajo particulares que incluyen ciertas normas, incentivos, lenguaje, percepción de tiempos, recursos, capacitación, educación y expectativas que a menudo difieren entre sí.⁵ Por ejemplo, las CBO deben resolver las necesidades inmediatas de sus afiliados mientras que los investigadores generalmente trabajan en proyectos de 2-5 años de duración con objetivos a largo plazo. A menudo las CBO desconfían de los investigadores pues se sienten “usadas” por los mismos para la recolección sus datos, toman todo el crédito y no proporcionan la información a cambio.⁶ También llegan a sentir que los investigadores tienen un exceso de recursos; por ejemplo, el personal de una CBO llega a recibir salarios muy por debajo de los que sus colaboradores investigadores reciben. Por otro lado los investigadores a menudo se frustran por el ritmo acelerado de las CBO, la falta de personal y la falta de prioridad para las actividades de investigación. Cuando la CBO y el investigador colaboran en un proyecto, existe un desbalance de poder inherente. A los investigadores se les percibe como “expertos” por su grado académico. La sabiduría de las CBO-conocimiento de la comunidad, del funcionamiento de intervenciones y su acceso a la población-algo que los investigadores subestiman y pasan por alto.

¿qué se está haciendo?

Un método sencillo pero vital de colaboración es asegurarse que los datos recolectados por el investigador estén a disponibilidad de la CBO. La Universidad de British Columbia en Canadá, realizó un estudio a gran escala sobre cómo utilizan los sistemas de salud y los recursos comunitarios las personas que viven con VIH/SIDA. Después del estudio, se contrató a un investigador de enlace comunitario para que trabajara con las CBO y juntos determinaran las necesidades de información de las mismas y analizaran la enorme y valiosa base de datos del estudio para ser usada en los programas de las CBO.⁷ Otro método de colaboración más complejo, implica trabajar juntos desde el inicio para el desarrollo de programas. La Fundación de SIDA de San Francisco (SFAF sus siglas en inglés) quería entender porqué los hombres gay/bisexuales continuaban infectándose con el VIH, por lo que inició una investigación cualitativa con hombres de alto riesgo en colaboración con CAPS-UCSF. La SFAF y los investigadores se reunían semanalmente a comentar la pregunta de investigación, el diseño del instrumento y a discutir las transcripciones de entrevistas. Desarrollaron y evaluaron dos intervenciones y una campaña publicitaria. Como producto de esta colaboración, los programas Gay Life y Black Brothers Esteem continúan operando.⁸ La colaboración a menudo requiere del apoyo de una infraestructura sólida. En San Francisco, la iniciativa de colaboración de CAPS brindó fondos, capacitación, supervisión, asistencia técnica y compaginó investigadores con CBO para efectuar la evaluación de programas. Esta iniciativa fue financiada conjuntamente por la universidad y fundaciones privadas. Las CBO formularon las preguntas de investigación y realizaron la evaluación con ayuda de los investigadores. Los resultados fueron divulgados en foros públicos y a través de un ejemplar especial de una revista científica. Este modelo colaborativo ha sido replicado a lo largo de los EEUU.⁹

¿cuáles son las mejores prácticas?

Aunque colaborar puede ser una actividad intensa de trabajo y de recursos, los beneficios para la CBO, el investigador y el campo de la prevención del VIH ameritan la inversión. Las siguientes recomendaciones pueden ayudar a asegurar una experiencia satisfactoria:^10,11

Escoger cuidadosamente al colaborador (CBO o investigador). Entrevistar varios individuos y agencias. Pedir y revisar sus referencias.
La agencia debe generar un interés y sentido de pertenencia entre sus directivos y su personal hacia el proyecto.
Definir roles y responsabilidades clara y repetidamente.
Planear y presupuestar el tiempo empleado por el investigador y la CBO para comunicarse y reunirse.
Resolver conflictos en la medida que surjan.
Tener flexibilidad en cuanto a posibles cambios en el ámbito y/o amplitud de la investigación.
Anticipar cambios de personal y anticipar tiempo para orientar y adiestrar al nuevo personal.
Ayudar a capacitar a la agencia antes de iniciar una investigación .La investigación formativa, la descriptiva y la de desarrollo teórico son de mucha utilidad; la evaluación de los resultados no es siempre la mejor opción para nuevas intervenciones o nuevas CBO.
Diseñar una investigación que tenga “una protección”, es decir, si se está evaluando una nueva intervención, quizá se deba incluir desde el inicio preguntas de investigación alternas.
Planear estrategias de divulgación a la comunidad en todas las fases de la investigación.
Monitorear conjuntamente el control de calidad de la investigación.
Asegurar que se tengan los recursos y apoyo adecuados para el momento de la intervención y de la evaluación.

¿qué sostiene a la colaboración?

Existen algunas iniciativas recientes por medio de becas y subvenciones federales, privadas y universitarias. Sin embargo los proveedores de fondos deben continuar designando dinero para el trabajo conjunto entre investigadores y CBO, y este requisito deberá estar estructurado dentro de la propuesta de solicitud de fondos (grant);¹² así los fondos tan requeridos para los programas no irán sólo hacia la investigación. La colaboración, además de requerir de fondos adecuados requiere de tiempo, energía y compromiso. Sin éstos requerimientos básicos la meta final de la colaboración-una prevención del VIH más efectiva-no se logrará.

¿quién lo dice?

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

Recursos:

Behavioral and Social Science Volunteer Program (BSSV) American Psychological Association 750 First Street, N.E. Washington, D.C., 20002-4242 202/218-3993 Fax: 202/336-6198 https://www.apa.org/pi/aids/resources/exchange/2013/01/bssv-program HIV Community-Based Research www.cbrc.net Loka Institute PO Box 355 Amherst, MA 01004 413/559-5860 https://centerhealthyminds.org/programs/loka-initiative

Preparado por Ellen Goldstein MA*, Beth Freedman MPH*, Dan Wohlfeiler MPH**; Traducción Romy Benard-Rodríguez y Maricarmen Arjona *CAPS, **STD Prevention Training Center Septiembre 2001. Hoja Informativa 40S

Resource

Theory

What is the role of theory in HIV prevention?

What is theory and how can it help?

A theory describes what factors or relationships influence behavior and/or environment and provides direction on how to impact them. Theories used in HIV prevention are drawn from several disciplines, including psychology, sociology and anthropology. A theory becomes formalized when it is carefully tested with the results repeatable in a number of different settings, and generalizable to various communities.¹ Both formal and informal (or implicit) theories first begin with an individual’s observation about a person or phenomenon. Informal theories—those conceived by service providers— are not usually “tested,” yet these intuitive beliefs about why people do what they do are very useful and often similar to concepts found in formal theories conceived by academics. Theories can help providers frame interventions and design evaluation. When designing or choosing an intervention, theory can show what factors should be targeted and where to focus interventions. Theories can help define the expected outcome of an intervention for evaluation purposes. Also, basing programs on a tested theory gives it scientific support, especially if the program hasn’t been evaluated.² HIV prevention providers are frequently required to use theory in the development of prevention interventions. It’s common, though, for providers to pick a theory based on their intervention. Because many providers are not trained or supported in using theory, they can miss the opportunity to use it as a process for thinking critically about a community in the development of programs.

How can theory guide programs?

Answering the questions in the framework below can help in selecting the most appropriate theories and interventions for a particular community:³

Which communities/populations are targeted for services?
What are the specific behaviors that put them at risk for HIV/STDS?
What are the factors that impact risk-taking behaviors?
Which factors are the most important and can be realistically addressed?
What theory(ies) or models best address the identified factors?
What kind of intervention can best address above factors?

Behaviors that place people at risk for STDS/HIV acquisition and transmission are often the result of many complex factors operating at multiple levels. Theories of behavior change usually address one or more these levels and include individual, interpersonal, community, and structural and environmental factors. Many researchers and providers use a combination of factors from several theories to guide their programs. Following are select theories and models and examples of programs that use them.

Structural and policy level

These theories look at societal and environmental influences on health, including laws, policies, customs, economic conditions and social inequalities (e.g. racism, classism, sexism). Social Disorganization Theory states that where social institutions, norms and values are no longer functioning, high rates of violence, drug abuse, poverty and disease occur. Theory of Gender and Power views the differences in labor, power dynamics, and relationship-investment between women and men as structures that can produce inequalities for women and increase women’s risk and vulnerability to HIV.⁵ Family to Family is a structural intervention that strengthens family functioning and the bonds that connect families to each other in Harlem, NY. Designed to address a broad range of social issues, the program seeks to foster strong relationships in a community with high rates of violence, drug abuse and HIV infection, thus influencing the social determinants of individual risk behavior.⁶

Community level

Empowerment Education Theory, based on Paulo Freire’s popular education model, engages groups to identify and discuss problems.⁷ Once the issue is fully understood by community members, solutions are jointly proposed, agreed, and acted upon. This seeks to promote health by increasing people’s feelings of power and control over their lives. Diffusion of Innovation helps understand how new ideas or behaviors are introduced to, and are spread into and then accepted by a community.⁸ Voices of Women of Color Against HIV/AIDS (VOW) in New York City, is a community organizing intervention based on empowerment theory that aims to increase the involvement of women of color in all aspects of HIV prevention. Women meet monthly to discuss HIV/AIDS issues. VOW organizes trainings on topics of highest concern, and helps women advocate for formulating or changing policies. VOW has met with legislators, given public testimony and organized a women’s policy conference.⁹

Interpersonal level

Social Cognitive Theory views the adoption of behaviors as a social process influenced by interactions with a person and others in their environment.¹⁰ Two primary components of this theory are: 1) modeling of behaviors we see others performing, and 2) self-efficacy, a person’s belief that s/he is capable of performing the new behavior in the proposed situation. Social Support/Social Networks describes the impact of social relationships on health and well-being, where social networks refers to a web of social relationships and social support is the aid and assistance received through those relationships.¹¹ Lista Para Accion is an intervention in Long Beach, CA, that works with Latino gay men and is based on social support and social cognitive theories. The program features four skills-based workshops held in a local Latino dance club. Participants who complete all four workshops can become “Compadres” or community leaders who serve as a support network or “second family” for new workshop participants.¹²

Individual level

The Health Belief Model proposes that in order for persons to change their behaviors they must first believe they are susceptible to a particular condition, and that the severity of that condition is serious.¹³ Stages of Changeexplains the process of incremental behavior change, from having no intentions to changing, to maintaining safer behaviors.¹⁴ The five stages are: Precontemplation, Contemplation, Preparation, Action and Maintenance. Theory of Reasoned Action sees intention as the main influence on behavior.¹⁵ Intentions are a combination of attitudes toward the behavior as well as perceived opinions of peers, both heavily influenced by social norms. Students Together Against Negative Decisions (STAND) is a peer educator training in a rural Georgia county that is based on stages of change and diffusion of innovations theories. HIV prevention training topics are sequenced to match each of the stages of change. STAND prepares teens to initiate conversations with their peers about sexual risk reduction, then assess a person’s stage of change and suggest specific activities. Peer educators reported a sevenfold larger increase in condom use and a 30% decrease in unprotected intercourse.¹⁶

What else is there?

Besides tested and implicit theories, there are strategies that are used as frameworks for programs. Harm Reduction accepts that while harmful behaviors exist, the main goal is to reduce their negative effects.¹⁷ Community Organizing/Mobilization approaches encourage communities to advocate for healthier conditions in their lives.¹⁸ Providers have tremendous insight into what puts their clients at risk for HIV and why. Funders need to accept both tested and implicit theories as a valid base for programs, which often go beyond HIV prevention to address violence, poverty and drug abuse.

Says who?

1. Goldman KD, Schmalz KJ. Theoretically speaking: overview and summary of key health education theories. Health Promotion Practice. 2001:2;277-281. 2. Centers for Disease Control and Prevention. Evaluating CDC-Funded Health Department HIV Prevention Programs. December 1999.https://www.cdc.gov/hiv/dhap/peb/index.html  3. Freeman A, Vogan S, Rietmeijer K, et al. Bridging theory and practice: a course on apply-ing behavioral theory to STD/HIV prevention. Presented at National HIV Prevention Conference, Atlanta, GA; 1999. Abst #263. 4. Elliott MA, Merrill FE. Social disorganization. New York, NY: Harper; 1961. 5. Wingood GM, DiClemente RJ. Application of the theory of gender and power to examine HIV-related exposures, risk factors and effective interventions for women. Health Education and Behavior. 2000;27:539-565. 6. Fullilove RE, Green L, Fullilove MT. The Family to Family pro-gram: a structural intervention with implications for the prevention of HIV/AIDS and other community epidemics. AIDS. 2000;14S1;S63-S67. 7. Wallerstein N. Powerlessness, empowerment and health: implications for health promotion programs. American Journal of Health Promotion. 1992;6:197-205. 8. Rogers EM. Diffusion of Innovations. Third edition. New York, NY: The Free Press:1983. 9. Elcock S, Goodman D. Women of color doing it for ourselves: HIV prevention policies. Presented at the National HIV Prevention Conference, Atlanta , GA. 1999, Abst. #443. 10. Bandura A. Social cognitive theory and exercise of control over HIV infection. In DiClemente RJ (ed) Preventing AIDS: Theories and Methods of Behavioral Interventions. New York, NY: Plenum Press; 1994. 11. Glanz K, Marcus Lewis F, Rimer BK, Eds. Health Behavior and Health Education: Theory, Research and Practice. 2nd Edition. San Francisco: Jossey-Bass, Inc. 1997. 12. Buitron M, Corby N, Rhodes F. Creating a culturally appropriate behavioral prevention intervention for Spanish speaking gay men from an existing risk-reduction program. Presented at the International Conference on AIDS, Geneva, Switzerland, 1998. Abst # 335553. 13. Rosenstock IM, Strecher VJ, Becker MH. The health belief model and HIV risk behavior change. In DiClemente RJ (ed) Preventing AIDS: Theories and Methods of Behavioral Interventions. New York, NY: Plenum Press; 1994. 14. Prochaska JO, DiClemente CC, Norcross JC. In search of how people change. Applications to addictive behaviors. American Psychologist. 1992;47:1102-1114. 15. Fishbein M, Middlestadt SE. Using the theory of reasoned action as a framework for under-standing and changing AIDS-related behaviors. In Wasserheit JN (ed) Primary Prevention of AIDS: Psychological Approaches. 1989. 16. Smith MU, DiClemente RJ. STAND: A peer educator training curriculum for sexual risk reduction in the rural South. Preventive Medicine. 2000;30:441-449. 17. Brettle RP. HIV and harm reduction for injection drug users. AIDS. 1991;5:125-136. 18. Community organizing and community building for health. M Minkler, ed. New Brunswick, NJ: Rutgers University Press. 1997.

PREPARED BY ALICE GANDELMAN MPH*, BETH FREEDMAN MPH** *California HIV/STD Prevention Training Center,**CAPS January 2002. Fact Sheet #14ER Special thanks to the following reviewers of this Fact Sheet: David Cotton, Pat Coury-Doniger, Ann Freeman, Andy Handler, Julie Lifshay, Matthew Staley, Javid Syed.