Rogério M. Pinto

‘It's really a hard life’: Love, gender and HIV risk among male‐to‐female transgender persons

Scientific studies demonstrate high rates of HIV infection among male‐to‐female (MTF) transgender individuals and that stigma and discrimination place MTFs at increased risk for infection. However, there is little research examining how gender roles contribute to HIV risk. This paper reports on in‐depth interviews with 20 MTFs attending a community clinic. Data reveal that stigma and discrimination create a heightened need for MTFs to feel safe and loved by a male companion and that in turn places them at a higher risk for acquiring HIV. Male‐to‐female transgender individuals appear to turn to men to feel loved and affirmed as women; their main HIV risk stems from their willingness to engage with sexual partners who provide a sense of love and acceptance but who also may also request unsafe sexual behaviours. A model illustrating how HIV risk is generated from stigma and discrimination is presented.

Keeping the Spirit of Community Partnerships Alive in the Scale Up of HIV/AIDS Prevention: Critical Reflections on the Roll Out of DEBI (Diffusion of Effective Behavioral Interventions)

DEBI, or the Diffusion of Effective Behavioral Interventions is the largest centralized effort to diffuse evidence-based prevention science to fight HIV/AIDS in the United States. DEBI seeks to ensure that the most effective science-based prevention interventions are widely implemented across the country in community-based organizations. Thus, this is a particularly timely juncture in which to critically reflect on the extent to which known principles of community collaboration have guided key processes associated with the DEBI rollout. We review the available evidence on how the dissemination of packaged interventions is necessary but not sufficient for ensuring the success of technology transfer. We consider additional principles that are vital for successful technology transfer, which were not central considerations in the rollout of the DEBI initiative. These issues are: (1) community perceptions of a top-down mode of dissemination; (2) the extent to which local innovations are being embraced, bolstered, or eliminated; and (3) contextual and methodological considerations that shape community preparedness. Consideration of these additional factors is necessary in order to effectively document, manage, and advance the science of dissemination and technology transfer in centralized prevention efforts within and outside of HIV/AIDS.

Male-to-Female Transgender Individuals Building Social Support and Capital From Within a Gender-Focused Network

ABSTRACT The literature on male-to-female transgender myriad problems such individuals face in their day-to-day lives, including high rates of HIV/AIDS, addiction to drugs, violence, and lack of health care. These problems are exacerbated for ethnic and racial minority MTFs. Support available from their social networks can help MTFs alleviate these problems. This article explores how minority MTFs, specifically in an urban environment, develop supportive social networks defined by their gender and sexual identities. Using principles of community-based participatory research (CBPR), 20 African American and Latina MTFs were recruited at a community-based health care clinic. Their ages ranged from 18 to 53. Data were coded and analyzed following standard procedure for content analysis. The qualitative interviews revealed that participants formed their gender and sexual identities over time, developed gender-focused social networks based in the clinic from which they receive services, and engaged in social capital building and political action. Implications for using CBPR in research with MTFs are discussed.

“You've Gotta Know the Community”: Minority Women Make Recommendations About Community-Focused Health Research

ABSTRACT Objectives: To determine what ethnic and racial minority women recommend as the best approaches to participatory health research in their communities. To achieve this goal, this study focused on HIV prevention research. Methods: In 2003, Seven African American and seven Latina women (ages 33 to 52), all members of an HIV Prevention Collaborative Board, participated in individual interviews, lasting about 90 minutes each. Participants discussed their involvement in participatory research, and made recommendations as to how health researchers might better engage their communities. Data were coded independently by two coders following standard procedure for content analysis. Results: Womens voices and expertise can help guide health-related research. This study shows that: (1) participatory HIV prevention research should be founded on trust and commitment, leading to social support; (2) research partners ought to come from diverse backgrounds and be knowledgeable about the community and willing to work on common objectives; and (3) collaborative partnerships ought to portray an image of strength and cohesion, and a clear articulation of the mission around a research project. Implications: To develop meaningful health research, researchers need to establish long-term ongoing relationships with community collaborators, including minority women from diverse backgrounds. Researchers ought to take a holistic approach working with communities, and ought to consider their research interests vis-à-vis the communitys needs.

Community health workers in Brazil's Unified Health System: a framework of their praxis and contributions to patient health behaviors.

Community health workers (CHWs) play a pivotal role in primary care, serving as liaisons between community members and medical providers. However, the growing reliance of health care systems worldwide on CHWs has outpaced research explaining their praxis - how they combine indigenous and technical knowledge, overcome challenges and impact patient outcomes. This paper thus articulates the CHW Praxis and Patient Health Behavior Framework. Such a framework is needed to advance research on CHW impact on patient outcomes and to advance CHW training. The project that originated this framework followed community-based participatory research principles. A team of U.S.-Brazil research partners, including CHWs, worked together from conceptualization of the study to dissemination of its findings. The framework is built on an integrated conceptual foundation including learning/teaching and individual behavior theories. The empirical base of the framework comprises in-depth interviews with 30 CHWs in Brazils Unified Health System, Mesquita, Rio de Janeiro. Data collection for the project which originated this report occurred in 2008-10. Semi-structured questions examined how CHWs used their knowledge/skills; addressed personal and environmental challenges; and how they promoted patient health behaviors. This study advances an explanation of how CHWs use self-identified strategies--i.e., empathic communication and perseverance--to help patients engage in health behaviors. Grounded in our proposed framework, survey measures can be developed and used in predictive models testing the effects of CHW praxis on health behaviors. Training for CHWs can explicitly integrate indigenous and technical knowledge in order for CHWs to overcome contextual challenges and enhance service delivery.

Community Perspectives on Factors That Influence Collaboration in Public Health Research

Community collaboration in research may lead to better methods, results, and dissemination of interventions. Little systematic research has examined specific factors that influence community-based organizations (CBOs) to collaborate in public health research. There is an urgent need to advance knowledge on this topic so that together, researchers and CBOs can minimize barriers to collaboration. This study advances a CBOfocused characterization of collaboration in HIV-prevention research. By focusing on the perspectives of 20 key informants in 10 HIV-prevention CBOs, qualitative data revealed factors that influenced their collaborations in four domains: (a) Researchers’ Characteristics (expertise, availability), (b) Collaborative Research Characteristics (ought to improve services and CBO infrastructure); (c) Community Partner—Researcher Relationships (resolving social and professional issues); and (d) Barriers to HIV-Prevention Research Collaboration (cultural and social disconnect between CBO and academia). To reduce barriers, researchers ought to enhance motivators that facilitate collaboration. To use the advantages of community-based research, prevention scientists and policy makers ought to embrace CBOs’ characterization of what makes health research genuinely collaborative.

HIV prevention and primary care for transgender women in a community-based clinic.

&NA; Male‐to‐female transgender individuals, or transgender women (TW), are at high risk for HIV infection and face multiple barriers to HIV care. Advocates agree that numerous factors need to be addressed concurrently to prevent HIV infection in TW, including primary health care. This article examines how a community‐based clinic that offers free or low‐cost care addresses the health care needs of TW. A total of 20 TW who attended a health care clinic dedicated to community‐based health were interviewed regarding best practices for HIV prevention and primary care. In‐depth interviews were conducted, transcribed, coded, and analyzed. Factors reported to be effective for HIV prevention and primary care included (a) access to health care in settings not dedicated to serving transgender and/or gay communities, (b) a friendly atmosphere and staff sensitivity, and (c) holistic care including hormone therapy. Community‐based health care settings can be ideal locales for HIV prevention and primary care for TW.

Adherence to antiretroviral therapy in a context of universal access, in Rio de Janeiro, Brazil

Abstract Adherence is integral to improving and maintaining the health and quality of life of people living with HIV. Two-hundred HIV-positive adults recruited from teaching hospitals and non-governmental organizations (NGOs) in Rio de Janeiro City were assessed on socio-demographic factors, adherence to antiretroviral therapy (ART) and psychosocial factors hypothesized to be associated with ART. Predictors of non-adherence were analyzed using bivariate and multivariate analyses. Self-reported medication adherence was high (82% had adherence >90%). Non-adherence was associated with personal factors (i.e. sexual orientation, self-efficacy), physical factors (i.e. loss of appetite) and interpersonal factors (i.e. doctor-patient relationship). Adherence in Brazil is as good, if not better, than that seen in the US and western Europe, which is noteworthy since the sample was derived predominantly from public healthcare settings. It is possible that the connection to NGOs in Rio de Janeiro City played a helpful role in achieving high levels of adherence in this sample of people living with HIV and AIDS. Recommendations, based on study findings, include enhancing and sustaining supportive services for NGOs, promoting patient self-efficacy and behavioral skills for adherence, increasing social network support and having healthcare providers directly address patients’ medication beliefs, attitudes and experience with side effects.

“I feel like I'm carrying a weapon.” Information and motivations related to sexual risk among girls with perinatally acquired HIV

Abstract Some adolescent girls perinatally infected with HIV (PIH) engage in sexual behavior that poses risks to their own well-being and that of sexual partners. Interventions to promote condom use among girls PIH may be most effective if provided prior to first sexual intercourse. With in-depth interviews, we explored gender- and HIV-specific informational and motivational factors that might be important for sexual risk reduction interventions designed to reach US girls PIH before they first engage in sexual intercourse. Open-ended interview questions and vignettes were employed. The information–motivation–behavioral skills (IMB) model guided descriptive qualitative analyses. Participants (20 girls PIH ages 12–16 years) had experienced kissing (n=12), genital touching (n=6), and oral (n=3), vaginal (n=2), and anal sex (n=1). Most knew sex poses transmission risks but not all knew anal sex is risky. Motivations for and against condom use included concerns about: sexual transmission, psychological barriers, and partners’ awareness of the girls HIV+ status. Girls were highly motivated to prevent transmission, but challenged by lack of condom negotiation skills as well as negative potential consequences of unsafe sex refusal and HIV status disclosure. Perhaps most critical for intervention development is the finding that some girls believe disclosing ones HIV status to a male partner shifts the responsibility of preventing transmission to that partner. These results suggest a modified IMB model that highlights the role of disclosure in affecting condom use among girls PIH and their partners. Implications for cognitive–behavioral interventions are discussed.

Exploring group dynamics for integrating scientific and experiential knowledge in Community Advisory Boards for HIV research.

Abstract To demonstrate how Community Advisory Boards (CABs) can best integrate community perspectives with scientific knowledge and involve community in disseminating HIV knowledge, this paper provides a case study exploring the structure and dynamic process of a “Community Collaborative Board” (CCB). We use the term CCB to emphasize collaboration over advisement. The CCB membership, structure, and dynamics are informed by theory and research. The CCB is affiliated with Columbia University School of Social Work and its original membership included 30 members. CCB was built using six systematized steps meant to engage members in procedural and substantive research roles: (1) engaging membership; (2) developing relationships; (3) exchanging information; (4) negotiation and decision-making; (5) retaining membership; and (6) studying dynamic process. This model requires that all meetings be audio-taped to capture CCB dynamics. Using transcribed meeting data, we have identified group dynamics that help the CCB accomplish its objectives: (1) dialectic process helps exchange of information; (2) mutual support helps members work together despite social and professional differences; and (3) problem solving helps members achieve consensus. These dynamics also help members attain knowledge about HIV treatment and prevention and disseminate HIV-related knowledge. CABs can be purposeful in their use of group dynamics, narrow the knowledge gap between researchers and community partners, prepare members for procedural and substantive research roles, and retain community partners.