"They see you as a different thing": the experiences of men who have sex with men with healthcare workers in South African township communities.

OBJECTIVES: To describe interactions between men who have sex with men (MSM) and healthcare workers (HCW) in peri-urban township communities in South Africa. METHOD: Qualitative study using semistructured in-depth interviews and focus group discussions in the Gauteng province townships of Soweto and Mamelodi. 32 MSM were purposively sampled for in-depth interviews and 15 for focus group discussions. Topics explored included identity, sexuality, community life, use of health services and experiences of stigma and discrimination. RESULTS: MSM felt their options for non-stigmatising sexual healthcare services were limited by homophobic verbal harassment by HCW. Gay-identified men sought out clinics with reputations for employing HCW who respected their privacy and their sexuality and challenged those HCW who mistreated them. Non-gay-identified MSM presented masculine, heterosexual identities when presenting for sexual health problems and avoided discussing their sexuality with HCW. CONCLUSIONS: The strategies MSM employ to confront or avoid homophobia from HCW may not be conducive to sexual health promotion in this population. Interventions that increase the capacity of public sector HCW to provide appropriate sexual health services to MSM are urgently needed.

The legacy of the Tuskegee Syphilis Study: assessing its impact on willingness to participate in biomedical studies.

The phrase, 'legacy of the Tuskegee Syphilis Study', is sometimes used to denote the belief that Blacks are more reluctant than Whites to participate in biomedical research studies because of the infamous study of syphilis in men run by the U.S. Public Health Service from 1932-72. This paper is the first to attempt to assess directly the accuracy of this belief within a multi-city, multi-racial, large-scale, detailed random survey. We administered the Tuskegee Legacy Project (TLP) Questionnaire to 826 Blacks and non-Hispanic White adults in three U.S. cities. While Blacks had higher levels of general awareness of the Tuskegee Syphilis Study, there was no association between either awareness or detailed knowledge of the Tuskegee Syphilis Study and willingness to participate in biomedical research, either for Blacks or Whites observed in our survey. While this study refutes the notion that there is a direct connection between detailed knowledge of the Tuskegee Syphilis Study and willingness to participate in biomedical research, it does not assess the broader question of whether and how historical events influence people's willingness to participate in research. Future studies should explore this.

Awareness of the Tuskegee Syphilis Study and the US presidential apology and their influence on minority participation in biomedical research.

OBJECTIVES: We compared the influence of awareness of the Tuskegee Syphilis Study and the presidential apology for that study on the willingness of Blacks, non-Hispanic Whites, and Hispanics to participate in biomedical research. METHODS: The Tuskegee Legacy Project Questionnaire was administered to 1133 adults in 4 US cities. This 60-item questionnaire addressed issues related to the recruitment of minorities into biomedical studies. RESULTS: Adjusted multivariate analysis showed that, compared with Whites, Blacks were nearly 4 times as likely to have heard of the Tuskegee Syphilis Study, more than twice as likely to have correctly named Clinton as the president who made the apology, and 2 to 3 times more likely to have been willing to participate in biomedical studies despite having heard about the Tuskegee Syphilis Study (odds ratio [OR]=2.9; 95% confidence interval [CI]=1.4, 6.2) or the presidential apology (OR=2.3; 95% CI=1.4, 3.9). CONCLUSIONS: These marked differences likely reflect the cultural reality in the Black community, which has been accustomed to increased risks in many activities. For Whites, this type of information may have been more shocking and at odds with their expectations and, thus, led to a stronger negative impact.

The Tuskegee Legacy Project: willingness of minorities to participate in biomedical research.

The broad goal of the Tuskegee Legacy Project (TLP) study was to address, and understand, a range of issues related to the recruitment and retention of Blacks and other minorities in biomedical research studies. The specific aim of this analysis was to compare the self-reported willingness of Blacks, Hispanics, and Whites to participate as research subjects in biomedical studies, as measured by the Likelihood of Participation (LOP) Scale and the Guinea Pig Fear Factor (GPFF) Scale. The Tuskegee Legacy Project Questionnaire, a 60 item instrument, was administered to 1,133 adult Blacks, Hispanics, and non-Hispanic Whites in 4 U.S. cities. The findings revealed no difference in self-reported willingness to participate in biomedical research, as measured by the LOP Scale, between Blacks, Hispanics, and Whites, despite Blacks being 1.8 times as likely as Whites to have a higher fear of participation in biomedical research on the GPFF Scale.

The Tuskegee Legacy Project: history, preliminary scientific findings, and unanticipated societal benefits.

This article is intended to provide a relatively complete picture of how a pilot study--conceived and initiated within an NIDCR-funded RRCMOH--matured into a solid line of investigation within that center and "with legs" into a fully funded study within the next generation of NIDCR centers on this topic of health disparities, the Centers for Research to Reduce Oral Health Disparities. It highlights the natural opportunity that these centers provide for multicenter. cross-disciplinary research and for research career pipelining for college and dental school students; with a focus, in this case, on minority students. Futhermore, this series of events demonstrates the rich potential that these types of research centers have to contribute in ways that far exceed the scientific outcomes that form their core. In this instance, the NMOHRC played a central--and critical, if unanticipated--role in contributing to two events of national significance, namely the presidential apology to the African American community for the research abuses of the USPHS--Tuskegee syphilis study and the establishment of the National Center for Bioethics in Research and Health Care at Tuskegee University. Research Centers supported by the NIH are fully intended to create a vortex of scientific activity that goes well beyond the direct scientific aims of the studies initially funded within those centers. The maxim is that the whole should be greater than the sum of its initial constituent studies or parts. We believe that NMOHRC did indeed achieve that maxim--even extending "the whole" to include broad societal impact. well beyond the scope of important, but mere, scientific outcomes--all within the concept and appropriate functions of a scientific NIH-funded research center.

What is community? An evidence-based definition for participatory public health.

Increased emphasis on community collaboration indicates the need for consensus regarding the definition of community within public health. This study examined whether members of diverse US communities described community in similar ways. To identify strategies to support community collaboration in HIV vaccine trials, qualitative interviews were conducted with 25 African Americans in Durham, NC; 26 gay men in San Francisco, Calif; 25 injection drug users in Philadelphia, Pa; and 42 HIV vaccine researchers across the United States. Verbatim responses to the question "What does the word community mean to you?" were analyzed. Cluster analysis was used to identify similarities in the way community was described. A common definition of community emerged as a group of people with diverse characteristics who are linked by social ties, share common perspectives, and engage in joint action in geographical locations or settings. The participants differed in the emphasis they placed on particular elements of the definition. Community was defined similarly but experienced differently by people with diverse backgrounds. These results parallel similar social science findings and confirm the viability of a common definition for participatory public health.

The role of community advisory boards: involving communities in the informed consent process.

Ethical research involving human subjects mandates that individual informed consent be obtained from research participants or from surrogates when participants are not able to consent for themselves. The existing requirements for informed consent assume that all study participants have personal autonomy; fully comprehend the purpose, risks, and benefits of the research; and volunteer for projects that disclose all relevant information. Yet contemporary examples of lapses in the individual informed consent process have been reported. The authors propose the use of community advisory boards, which can facilitate research by providing advice about the informed consent process and the design and implementation of research protocols. These activities could help reduce the number of individual informed consent lapses, benefiting study participants and the scientific integrity of the research in question.

Cost-effectiveness of the Mpowerment Project, a community-level intervention for young gay men.

OBJECTIVES: Previous evaluation demonstrated that the Mpowerment Project community-level intervention for young gay men reduces HIV risk behaviors. The current analysis was undertaken to estimate the intervention's health and economic outcomes. DESIGN/METHODS: We conducted a retrospective cost-effectiveness analysis. We estimated HIV infections averted, the gain in quality-adjusted life years (QALYs), cost per infection averted, and net cost. Using a population-level model, we portrayed two epidemic scenarios: the first with stable HIV prevalence and the other with rising HIV prevalence. Inputs included behavior change resulting from the intervention and program cost data. Cost was calculated from three perspectives: societal; societal excluding volunteer time; and that of a community-based organization (CBO). Outcomes were calculated for 1, 5 (baseline), and 20 years. RESULTS: The Mpowerment Project averted an estimated 2.0 to 2.3 HIV infections in the first year (according to the epidemic scenario), 5.0 to 6.2 over 5 years, and 9.2 to 13.1 over 20 years. The societal cost per HIV infection averted was estimated at between $14,600 and $18,300 over 5 years. Costs per infection averted were 28% lower when excluding volunteer time and 35% lower from the CBO perspective. Net savings were $700,000 to $900,000 over 5 years from the societal perspective. CONCLUSIONS: The Mpowerment Project is cost-effective compared with many other HIV prevention strategies. The cost per HIV infection prevented is far less than the lifetime medical costs of HIV disease.

Willingness to volunteer in future preventive HIV vaccine trials: issues and perspectives from three U.S. communities.

UNLABELLED: This study examined perceived risks, benefits, and desired information related to willingness to volunteer in preventive HIV vaccine trials. SAMPLE: Purposive sampling was used to select 90 participants among injecting drug users (Philadelphia, PA, U.S.A.); gay men (San Francisco, CA, U.S.A.); and black Americans (Durham, NC, U.S.A.). METHODS: A qualitative interview guide elicited perceived benefits, risks, and desired information relating to trial participation. Themes were developed from the transcribed texts and from freelists. RESULTS: Stated willingness to volunteer in a preventive HIV vaccine trial was similar across the three communities. Eight perceived benefits were reported, including self-benefits, altruism, and stopping the spread of AIDS. Seven perceived risks were reported, including negative side effects and vaccine safety issues, contracting HIV from the vaccine, and social stigmatization. Participants voiced the desire for eight types of information about issues relating to trust and confidentiality in the research process, health complications and later assistance, and vaccine trial methodology. CONCLUSIONS: In this study, many benefits as well as risks of preventive HIV vaccine trial participation were cited. Scientists conducting preventive HIV vaccine trials need to address community perceptions of risks and provide information about the research if trial enrollment is to be diverse and successful.

From science to application: the development of an intervention package.

Many community-based organizations and health departments want to implement HIV prevention interventions with scientifically demonstrated effectiveness. The Replicating Effective Programs (REP) project supported researchers in developing intervention packages designed to help prevention partners replicate effective programs in their settings. Intervention packages convey the intervention's foundation, components, and methods and are one part of a larger system needed to transfer research-based HIV prevention technology to service providers. Implementation packages were developed using a multistage process. The original researchers drafted the materials, advisory groups reviewed the packages, and adopting agencies used the materials in trial runs. The advisory groups and adopting agencies recommended extensive use of examples, thorough explanations about the rationale for each intervention component, explicit representation of people of color in the materials, clear statements about the intended audience(s), and an easy-to-use and visually appealing format. Packages were revised based on these recommendations and the outcomes of the trial runs.

The role of technical assistance in the replication of effective HIV interventions.

This article examines the role of technical assistance (TA) in supporting the replication of proven HIV interventions. A case study of the replication of the VOICES/VOCES intervention elucidates the level and types of TA provided to support new users through the adoption process. TA included help in garnering administrative support, identifying target audiences, recruiting groups for sessions, maintaining fidelity to the intervention's core elements, tailoring the intervention to meet clients' needs, strengthening staff members' facilitation skills, troubleshooting challenges, and devising strategies to sustain the intervention. Two to four hours per month of TA were provided to each agency adopting the intervention, at an estimated monthly cost of $206 to $412. Findings illustrate how TA supports replication by establishing a conversation between the researcher TA providers experienced with the intervention and new users. This communication helps preserve key program elements and contributes to ongoing refinement of the intervention.

Willingness to participate in biomedical research. African-americans vs whites.

PURPOSE: The overall goals of this study were: 1) to determine whether (and if so, the extent to which) African-Americans differed in their willingness to participate in biomedical studies as compared to non-Hispanic Whites, and 2) to determine the influence that a range of demographic, psycho-social and medico-historical variables had on the comparative willingness of these groups to participate in biomedical research. This report will present preliminary findings on the first goal.METHODS: The Tuskegee Legacy Project (TLP) Questionnaire, a 60 item instrument developed within the Northeastern Minority Oral Health Research Center (a P50 Center supported by the National Institute of Dental and Craniofacial Research at NIH), was administered via a random-digit dial telephone interview by the University of Alabama at Birmingham Survey Research Unit to 840 adult African-Americans and Whites in three city/county areas: Birmingham/Jefferson Cty, AL; Hartford/Hartford Cty, CT and Tuskegee/Macon Cty, AL.RESULTS: The response rates were 70%, 65% and 49% for Birmingham, Tuskegee and Hartford, respectively. A lower percentage of African-Americans (21%) reported that they were either somewhat or very likely to participate as biomedical research subjects than did Whites (29%) (p < 0.0001). In response to 7 prompts on 'who' was conducting a study, African-Americans indicated they were less likely to participate than Whites on 4 specific prompts and more likely to participate on only 1 prompt (p < 0.006 for each). In response to 9 prompts on 'what' a study asked participants to do, African-Americans indicated they were less likely to participate than Whites on only 2 specific prompts (p < 0.001 for each), more likely to participate on 2 prompts (p < 0.001), and were equally or near equally likely to participate on 5 prompts.CONCLUSIONS: The findings from this study show that African-Americans self-reported a lower willingness to participate in biomedical studies than did non-Hispanic Whites, and that African-American subjects were more influenced by the factor of 'who' was running the study than by the factor of 'what' they might have to do as study subjects. Study supported by grant P 50 DE10592 from the NIDCR at NIH.

Mobilizing young gay and bisexual men for HIV prevention: a two-community study.

BACKGROUND: To develop, implement and evaluate a community-level HIV prevention program (the Mpowerment Project) for young gay men in two US communities. DESIGN: Using a multiple baseline design, a cohort of young gay men was recruited independently of the intervention in each community and surveyed twice (1 year apart) regarding sexual risk behavior and psychosexual variables. The intervention was then implemented sequentially in each community. The cohorts were resurveyed immediately post- and 1-year post-intervention. Since there were few differences between the two communities, data were pooled to increase statistical power. INTERVENTION: The program had four components: peer outreach, whereby young gay men encouraged other men to engage in safer sex; peer-led small groups; a publicity campaign; and a young men's center. RESULTS: Baseline rates of unprotected anal intercourse were stable. Following intervention, the proportion of men who engaged in unprotected anal intercourse decreased from 38.3 to 30.9% (-19.3% relative reduction), with a reduction from 19.2 to 13.6% (-29.2% relative reduction) with non-primary partners, and a reduction from 57.7 to 41.8% (-27.6% relative reduction) with boyfriends. Reductions were sustained 1 year later with non-primary partners, but mixed results were found regarding sex with boyfriends. CONCLUSIONS: Mobilizing young gay men to support each other about safer sex is an effective approach to HIV prevention, but programs must be sustained. To reach young gay men, HIV prevention activities must be embedded into the satisfaction of needs for social and community belonging.

Factors related to the willingness of young gay men to participate in preventive HIV vaccine trials.

Given their high seroincidence, young gay men will be targeted for recruitment into HIV vaccine trials but many challenges stand in the way of enlisting their cooperation. This study examined factors associated with young gay men's willingness to participate in vaccine trials and identified reasons for agreeing or not agreeing to participate. The data come from the Young Men's Survey, a cohort of western U.S. young gay men aged 18 to 29 years, surveyed using mail-back questionnaires. Participants who reported being HIV-negative or who had not been tested for HIV (n = 390) were asked to rate their desire to be given an HIV vaccine and their degree of willingness to participate in a vaccine trial. They also responded to open-ended questions regarding their reasons for participating or not participating. Of these respondents, 91% wanted to be given an HIV vaccine, yet many had serious reservations about participating in a vaccine trial. Men who had engaged in HIV risk behavior reported greater willingness to participate. The most common reasons for wanting to participate were desires to contribute to ending the AIDS epidemic and desire to help others; however, fears for one's own health and safety made many reluctant to participate.

Actual versus perceived HIV status, sexual behaviors and predictors of unprotected sex among young gay and bisexual men who identify as HIV-negative, HIV-positive and untested.

OBJECTIVES: To compare the prevalence and predictors of HIV sexual risk behavior among young gay and bisexual men who perceived themselves to be HIV-negative, HIV-positive, or who were untested. DESIGN: Population-based sample of young gay and bisexual men. METHODS: Using multi-stage probability sampling, 408 gay and bisexual men aged 18-29 years in San Francisco were recruited and interviewed, and blood samples for HIV-testing from 364 participants were obtained. RESULTS: HIV prevalence was 18.7%, although 25% of the men who were HIV-positive did not know it. Thirty-seven per cent reported engaging in unprotected anal intercourse during the past year, including 59% of the men who knew they were HIV-positive, 35% of the men who perceived themselves HIV-negative and 28% of the untested men. Logistic regressions found similar predictors of unprotected intercourse for HIV-negatives and HIV-positives, including sexual impulsivity, substance use, sexual enjoyment and communication problems. CONCLUSIONS: The high rates of unprotected intercourse, particularly among the HIV-positive men, attest to the urgent need for HIV-prevention interventions for young gay and bisexual men. The findings suggest that many of the important variables to target in interventions are similar for both HIV-positive and HIV-negative men.

Unprotected sex and HIV risk taking among young gay men within boyfriend relationships.

A growing body of research shows that gay men in primary relationships engage in higher rates of unprotected anal intercourse than single gay men. We sought to (a) describe patterns of HIV risk taking among young gay men in boyfriend relationships and (b) identify characteristics of relationships that were most associated with engaging in unprotected intercourse. The data come from the Young Men's Survey, an ongoing longitudinal survey of 416 gay men aged 18 to 27 in three medium-sized West Coast communities. Fifty-one percent of the men with boyfriends had engaged in unprotected anal intercourse in the past 2 months, compared with 21% of the single men. Forty-two percent of the respondents who had unprotected intercourse with their boyfriend did not know their own and their partners' HIV status. Factors associated with unprotected intercourse included greater relationship involvement and time spent together, sexual behavior patterns, less involvement with the gay community, poor sexual communication skills, and misperceptions about safe sex. The findings highlight the need for HIV risk reduction interventions designed specifically for young gay men with boyfriends and identify critical areas to target in such interventions.

Differences in sexual behavior among HIV discordant and concordant gay men in primary relationships.

We investigated differences in unprotected anal intercourse among gay men in HIV concordant and discordant primary relationships. Individuals were recruited in 1992 from household- and bar-based samples of gay/bisexual men in Portland, Oregon, and Tucson, Arizona. Respondents were men who reported that they were in primary relationships of > or = 1 month and who reported their own and their partner's HIV status (n = 785). Comparisons were made between three groups: (a) HIV + respondents/HIV + partners; (b) HIV- respondents/HIV- partners; and (c) respondents whose partner's HIV status was different from their own (discordant), on sexual behavior, psychosocial, and demographic variables. Men in HIV concordant relationships reported significantly higher rates of unprotected anal intercourse (54% for +2 and 48% for --) than discordant couples (17%). HIV- men in concordant relationships were more likely to be monogamous (58%) and younger (22% < or = 25 years) than the other two groups. There were no significant differences among the groups regarding the kind of sexual behaviors they engaged in with nonprimary partners. The substantially lower rate of unprotected anal intercourse among men in discordant relationships compared to men in concordant relationships suggests that individuals and couples make judgments about sex and behavior based on knowledge of one's own and one's partner's HIV status.

Adolescents and the contraceptive pill: the impact of beliefs on intentions and use.

OBJECTIVES: To determine which beliefs about the contraceptive pill predict adolescent females' intentions to use the pill and their actual pill use, and to examine how intentions toward other birth control methods influence adolescents' intentions to use the pill and their eventual pill use. METHODS: Three hundred forty-five adolescents were interviewed about their beliefs regarding the consequences of using the pill and about their intentions to use the pill and other contraceptive methods. Follow-up interviews were conducted 1 year later, during which subjects reported their sexual activity and oral contraceptive use over the course of the year. RESULTS: Concerns about health and physical appearance differentiated subjects who intended to use the pill from those who did not, those who reported actually using the pill at all from those who did not, and those who did or did not use the pill consistently. The impact of beliefs differed between sexually active subjects and those who first had sex after the initial interview. Intentions to use withdrawal were negatively related to subjects' use of the pill (beta = -0.19, P < .05), although intentions to use condoms were unrelated to pill use. Intentions toward abortion were unrelated to either intentions to use the pill or eventual pill use. CONCLUSIONS: Female adolescents' beliefs about the contraceptive pill predicted their initial intentions to use the pill and their actual pill use over the course of a year. Adolescents may view withdrawal-although apparently not condoms-as an alternative to pill use. Abortion appears to be a backup to pill use rather than a substitute.