Salud es Outturn (Southwest US-Mexico Border Region) the community need
The US-Mexico border represents one of the highest risk communities for a myriad of health disparities, including HIV. While Latinos represented approximately 16% of the US population, in 201 06 they accounted for 21% of those newly diagnosed with HIV and 19% of people living with HIV in the same year.7-9 Underserved Latino populations on both sides of the border are more vulnerable to acquiring HIV largely due to the social determinants of health that contribute to this disparity. Thousands of individuals, whether for work or home, engage in daily border crossings.10
Recent immigration policy enforcement, in combination with anti-immigrant legislation in states such as Arizona, has increased fear associated with accessing health and human services, and exacerbated the stigma associated with speaking Spanish and immigrant status within the United States.11-12 Given these contextual factors, formidable barriers exist when attempting to manage HIV vulnerability. Thus, innovative methods are required to reach Latinos in a culturally and linguistically relevant manner, particularly in places within close proximity to the US-Mexico border.
ENGAGING CoMMUNITIES IN RESEARCH
Salud es Cultura, a Latino-focused HIV prevention intervention, resulted from a series of collaborative activities with three community-based organizations, two of which are Federally Qualified Health Centers (FQHCs). FQHCs serve a vulnerable and underserved area or population, offer a sliding fee scale, provide comprehensive services, and have quality assurance oversight. These collaborative activities included involvement in a national needs assessment that included individual, in-depth interviews, and focus groups with Latinos living with or at-risk of HIV to determine HIV risks and contexts that increase vulnerabilities for their communities. In addition, the principal investigator’s close collaboration with organizational leaders in HIV and AIDS advocacy both regionally and nationally, and her work with the organizations as they established peer health educator programs, facilitated community engagement. These collaborative efforts spanned nearly a decade.
The intervention also developed as the result of lived disparities and trust gained through interactions over time that facilitated both dialogue and a collective search for solutions. Early in the national needs assessment13 and largely due to the needs assessment’s qualitative nature, a new, Latino-specific definition of HIV risk emerged that did not completely conform to the risk categories associated with being gay or bisexual, having multiple sex partners, and engaging in unsafe injection drug use practices. Data from 121 interviews and 18 focus groups (n = 201) revealed that Latinos often experienced vulnerability due to (1) marriage-related sexual experiences, perceived sexual obligation (“sexo es un deber”—sex as a duty that is often associated with women’s economic dependence on male partners; not engaged in because of desire); (2) men’s lack of condom use with their “good women” or wives; (3) Latinas’ inability to assert condom use within a relationship wherein they had little social and economic power; (4) Mexican women’s inability to find employment on the Mexican side of the border after becoming mothers, which resulted in survival sex work during the day on the US side of the border; (5) women’s inability to evade both physical and psychological abuse from their husbands for a myriad of reasons; (6) homophobia and the inability of gay or bisexual men to live openly, which often resulted in marriage followed by “down-low” sexual relations; (7) resistance on the part of both men and women to use condoms regularly; (8) lack of both knowledge of, and access to, culturally and linguistically relevant healthcare and HIV testing; (9) lack of HIV and AIDS-related knowledge; and, (10) low socioeconomic status and history of racism, both external and internalized, and discrimination.
Given the multifaceted nature of stigma associated with HIV combined with the risk-exacerbating factors listed above, extensive dialogue was warranted to clearly discuss stigma and its relationship to HIV risk. These processes were facilitated through CBPR techniques. In-depth discussions with HIV positive community health workers in San Ysidro revealed that the word “stigma” in and of itself was highly problematic, due to its relation to the word “stigmata” in Spanish, or “marks of God.” The predominant fear was that stigma itself would be interpreted as marks of God, therefore potentially demarcating those with HIV. For this reason, stigma was only discussed in the intervention sessions after it had been fully and clearly defined.
The team’s collective task was to find a way to mitigate the adverse effects of stigma by facilitating an understanding of how it impacts health access and issues surrounding HIV status. Given the fear associated with being Latino, participants extensively discussed ways in which to confront hardships through cultural values and narratives. From these dialogues, the project team developed the title Salud es Cultura to demonstrate the inextricable link between health and culture.
These multiple focus groups and dialogues resulted in the development of a 45-minute intervention and materials including an educational rotafolio or flip chart that could be easily transported to diverse settings, a facilitator’s guide, and an evaluation plan. San Ysidro-based community health workers (people living with or affected by HIV) led the development of all project elements. Throughout the study, project staff met with community health worker teams in Los Angeles and El Paso to help ensure utility and effectiveness, given the diverse geographic regions involved. This process occurred until each site reached agreement regarding the anticipated usefulness of the intervention materials for the local community. Community health workers from each site then engaged in a one-day training in which communications methodology, an undergirding of the importance of culturally relevant communication techniques, and extensive role-playing were taught to ensure that each community health worker demonstrated competence in delivering the health charla (or “conversation”), the descriptive word used instead of the term “intervention.” Community health workers were also trained in institutional review board procedures and were tested to ensure that they clearly understood problems associated with coercion as well as the importance of informed consent.
Salud es Cultura was led by community health workers (promotores de salud) and engaged underserved Latinos in three southwestern US communities. All 579 participants were Latino adults from either El Paso, Texas (n = 204); San Ysidro, California (n = 175); or Los Angeles, California (n = 200). The purpose of the intervention was to decrease HIV-related stigma and increase HIV knowledge and perception of potential infection. Promotores delivered interactive group-based charlas to groups of Latinos in Spanish and English. To decrease stigma and motivate behavioral and attitudinal change, charlas emphasized positive Latino cultural values.
HIV stigma scores decreased significantly (p < .001) pre- to post-intervention, with participants demonstrating significant increases in HIV knowledge (p < .001), willingness to discuss HIV with one’s sexual partner (p < .001), and perceptions of vulnerability or risk of exposure to HIV (p = .006). While these findings are positive, the length and resources associated with the project did not allow for development and testing of the potential effects of multiple charlas. Whether due to having to rely on a sole charla or other limitations associated with the project length and resources, willingness to test for HIV 3 months post intervention was not significantly associated with increased testing. Female participants demonstrated a greater reduction in HIV-related stigma scores compared to their male counterparts, which may have been related to a greater increase in HIV knowledge scores (p = .016 and p = .007, respectively). This may also be explained by the emphasis placed on familism/familismo and the importance of open dialogue about sexual risk behaviors and reduction measures so as to protect all family members from HIV.
The effectiveness of this program and its resonance with community-based organizations working to reduce HIV vulnerability led to its further dissemination through four regional training sessions. Over 90 promotores were trained in Portland, Oregon; New York City; Washington, DC; and Oakland, California. The program’s popularity led to further dissemination and training sessions in Mayaguez and Ponce, Puerto Rico, and Ft. Lauderdale, Florida.
Furthermore, the deidentified data and results garnered from each site were shared electronically and in the form of site-specific reports with each community- based organization. All partners reported using these data and elements from the report to further their respective agencies’ grant and programmatic efforts.
Promotores-led interventions appear to reduce stigma overall, as well as stigma associated with sexual and reproductive health within underserved communities. These interventions also help build trust and facilitate CBPR engagement as well as collaborative efforts to mitigate health inequities among diverse contexts and communities. Additionally, because promotores programs are based within their respective communities, the skills and knowledge associated with their delivery resides within the community.