Adolescents and parental caregivers as lay health advisers in a community-based risk reduction intervention for youth: baseline data from Teach One, Reach One.

The purpose of the current study is to describe the demographic, behavioral, and psychosocial characteristics of adolescent and caregiver lay health advisers (LHAs) participating in an intervention designed to reduce risk behaviors among rural African-American adolescents. Teach One, Reach One integrates constructs from the Theory of Planned Behavior and Social Cognitive Theory. It acknowledges that changing the sexual behaviors of African-American adolescents requires changing one's knowledge, attitudes, normative beliefs about the behavior of peers, and self-efficacy regarding adolescent sexual behavior, parent-teen communication about sex, and healthy dating relations among adolescents. Study participants completed baseline questionnaires assessing demographics and psychosocial determinants (knowledge, attitudes, perceived social norms, and self-efficacy) of sexual behaviors. Sixty-two adolescent and caregiver dyads participated. Caregivers included biological parents, legal guardians, or other parental figures. Strengths and areas in need of improvement were determined using median splits. Few adolescents had initiated sex. Their strengths included high levels of open parent-teen communication; positive attitudes and normative beliefs regarding both sex communication and healthy dating relationships; and high knowledge and self-efficacy for healthy dating behaviors. Areas needing improvement included low knowledge, unfavorable attitudes, poor normative beliefs, and low self-efficacy regarding condom use. Caregiver strengths included positive attitudes, normative beliefs, and self-efficacy for sex communication; positive attitudes and self-efficacy for condom use; and low acceptance of couple violence. Areas needing improvement included low levels of actual communication about sex and low knowledge about effective communication strategies and condom use. The current study highlights the value of assessing baseline characteristics of LHAs prior to intervention implementation, as it enables a better understanding of the key characteristics necessary for planning and implementing interventions, as well as engaging in targeted training activities.

Bridging Research, Practice, and Policy: The "Evidence Academy" Conference Model.

Innovative models to facilitate more rapid uptake of research findings into practice are urgently needed. Community members who engage in research can accelerate this process by acting as adoption agents. We implemented an Evidence Academy conference model bringing together researchers, health care professionals, advocates, and policy makers across North Carolina to discuss high-impact, life-saving study results. The overall goal is to develop dissemination and implementation strategies for translating evidence into practice and policy. Each 1-day, single-theme, regional meeting focuses on a leading community-identified health priority. The model capitalizes on the power of diverse local networks to encourage broad, common awareness of new research findings. Furthermore, it emphasizes critical reflection and active group discussion on how to incorporate new evidence within and across organizations, health care systems, and communities. During the concluding session, participants are asked to articulate action plans relevant to their individual interests, work setting, or area of expertise.

Evaluating a community-partnered cancer clinical trials pilot intervention with African American communities.

Cancer clinical trial (CCT) accrual and retention rates remain disproportionately low among African Americans. Awarenesss and access to trials are crucial facilitators of trial participation. Strategies developed within a community-based participatory framework (CBPR) are potential solutions to increase awareness and access to CCTs. In this study, we describe the pilot phase of three innovative community-centered modules to improve basic CCT knowledge, awareness of locations to access CCT information, and opportunities to participate in CCTs. Four community organizations completed Community Bridges to CCT training-of-the-trainer and recruited adult African American volunteers to participate in one of three CCT education modules: a workshop about CCTs, a role play describing one person's experience with CCTs, or a call and response session reviewing myths and facts about CCTs. Pre- and post-test surveys were collected and analyzed using McNemar agreement statistic to evaluate changes in knowledge and attitudes regarding trials. Trainers enrolled 125 participants in the call and response (n = 22), role play (n = 60), and workshop (n = 43) modules. Module participants were mostly African American, female, and with a mean age of 53 years. Comparison of pre- and post-test responses demonstrates favorable changes in awareness of CCTs and where to access CCTs across the sample. Analysis by module type indicates significant increases for participants in the call and response (p < 0.01) and role play modules (p < 0.001), but not the workshop module. Despite measures taken to increase the participation and retention rate of African Americans in clinical trials, little advancement has been made. Developing tailored community education modules on CCTs within the CBPR framework is a promising innovation to increase knowledge about CCTs and favorable attitudes about participation that are known precursors to trial enrollment.

HIV Testing Experience and Risk Behavior Among Sexually Active Black Young Adults: A CBPR-Based Study Using Respondent-Driven Sampling in Durham, North Carolina.

African Americans are disproportionately affected by the HIV epidemic inclusive of men who have sex with men, heterosexual men, and women. As part of a community-based participatory research study we assessed HIV testing experience among sexually active 18-30 year old Black men and women in Durham, NC. Of 508 participants, 173 (74 %) men and 236 (86 %; p = 0.0008) women reported ever being tested. Barriers to testing (e.g., perceived risk and stigma) were the same for men and women, but men fell behind mainly because a primary facilitator of testing-routine screening in clinical settings-was more effective at reaching women. Structural and behavioral risk factors associated with HIV infection were prevalent but did not predict HIV testing experience. Reduced access to health care services for low income Black young adults may exacerbate HIV testing barriers that already exist for men and undermine previous success rates in reaching women.

Examining characteristics of congregation members willing to attend health promotion in African American churches.

BACKGROUND: Although churches are an important partner for improving health within the African American community, it is not known how congregants are best reached by health promotion activities and thus how best to target members in recruitment. This study examined how characteristics of churches and congregants' beliefs and interests in faith-based health promotion related to their willingness to attend church-based health promotion activities. METHOD: We surveyed adult congregants (n = 1,204) of 11 predominately African American churches in North Carolina. Surveys collected data within four domains: demographics (age, sex, education), behavioral (church attendance, respondent food choices, and physical activity), cognitive (church-based health promotion belief, Bible-based healthy living interest, healthy living resource interest), or environmental (family health, church travel distance, church health ministry activity, church members' food choices). Analyses used a dichotomous outcome, interest in attending programs offered by the health ministry. Domain-specific models were constructed. Logistic generalized estimating equations adjusted for clustering. RESULTS: Of the 1,204 congregants, 72% were female, 57% were 50 years or older, 84% had a high school education or more, and 77% had a chronic health condition. In bivariate analyses and in models adjusting for all four domains, cognitive factors had the highest odds of willingness to attend. CONCLUSION: Congregants' belief in the church's role in health promotion and their desire to learn about healthy behaviors highlight the role of the African American church as a partner in addressing health disparities and the need to capitalize on this expectation through stronger partnerships between medical and faith communities.

Community perceptions of genomic research: implications for addressing health disparities.

BACKGROUND: Increasing the engagement of racial and ethnic minorities in genomic research may help alleviate health disparities. This paper examines community perceptions of the relationships between race, genes, environment, and health disparities, and it discusses how such perceptions may influence participation in genomic research. METHODS: We conducted semi-structured interviews with 91 African American, Latino, and white lay community members and community leaders in North Carolina. Using constant comparison methods, we identified, compared, and developed linkages between conceptual categories and respondent groups. RESULTS: Participants described gene-environment interactions as contributing to group differences in health outcomes, expressed the belief that genetic predisposition to disease differs across groups, and said that social conditions trigger group-level genetic differences and create poorer health outcomes among African Americans. LIMITATIONS: Given the regional presence of major research institutions and the relatively high education level of many participants, this sample may not reflect the perspectives of those most disparately affected by health disparities. CONCLUSIONS: Members from multiple community sectors share perceptions and may respond to similar approaches when attempts are made to increase participation in genomic research. Researchers may inadvertently fuel the perception that health disparities experienced by minorities are rooted in the shared genomes of a particular group as distinct from those of other groups. The way researchers use race and ethnicity in recruitment, analysis, and communication of research findings inaccurately implies that there are genetic differences between races, when categories of social experience or ancestry may more accurately characterize health differences. Understanding these issues is crucial to designing effective community engagement strategies, recruitment plans, and messages about genomic research, which could ultimately help to lessen health disparities.

Acceptability of a mobile health unit for rural HIV clinical trial enrollment and participation.

Few rural minorities participate in HIV clinical trials. Mobile health units (MHUs) may be one strategy to increase participation. We explored community perceptions of MHU acceptability to increase clinical trial participation for rural minorities living with HIV/AIDS. We conducted 11 focus groups (service providers and community leaders) and 35 interviews (people living with HIV/AIDS). Responses were analyzed using constant comparative and content analysis techniques. Acceptable MHU use included maintaining accessibility and confidentiality while establishing credibility, community ownership and control. Under these conditions, MHUs can service rural locations and overcome geographic barriers to reaching major medical centers for clinical trials.

Silent endurance and profound loneliness: socioemotional suffering in African Americans living with HIV in the rural south.

We explored how community responses to HIV contribute to distress in African Americans living with HIV in the rural South of the United States. We listened to the voices of community members through focus groups and African Americans with HIV through interviews. Community avoidance of HIV, negative views of HIV, and discriminatory behavior powerfully affected the distress of people living with HIV (PLWH). Ongoing distress, coupled with limited support, led to a life in which many PLWH endured their pain in silence and experienced profound loneliness. We conceptualized their experiences as socioemotional suffering--the hidden emotional burden and inner distress of not only living with HIV, a complex serious illness, but also with the societal attitudes and behaviors that are imposed on the illness and on PLWH. To improve the quality of life and health of PLWH, we cannot focus solely on the individual, but must also focus on the local community and society as a whole.

Partnerships in health disparities research and the roles of pastors of black churches: potential conflict, synergy, and expectations.

BACKGROUND: The black church is a promising site to engage in health disparities research; however, little is understood about the pastors' perspectives. We used role theory to explore their expectations, potential conflicts, and synergy with research. METHODS: Four focus groups (n = 30) were conducted with pastors and analyzed using principles of grounded theory and content analysis. RESULTS: Pastors identified a variety of potential roles in research. They noted potential conflicts due to perceptions of research, the process, and pace of research. Areas of synergy included perceptions of health disparities research as consistent with the healthy mind, body, and spirit ideology, and clear benefits to congregations and communities. Pastors' research expectations included long-term commitments, honest and clear communication, investigator visibility, respect for church traditions/practices, and support in forming collaborations. CONCLUSIONS: Understanding pastors' roles, potential areas of synergy and conflict, and collaboration expectations offers insight in support of successful church-academic partnerships.

Evaluating Teach One Reach One-An STI/HIV Risk-Reduction Intervention to Enhance Adult-Youth Communication About Sex and Reduce the Burden of HIV/STI.

PURPOSE: Parents and caregivers play an important role in sexual socialization of youth, often serving as the primary source of information about sex. For African American rural youth who experience disparate rates of HIV/sexually transmitted infection, improving caregiver-youth communication about sexual topics may help to reduce risky behaviors. This study assessed the impact of an intervention to improve sexual topic communication. DESIGN: A Preintervention-postintervention, quasi-experimental, controlled, and community-based trial. SETTING: Intervention was in 2 rural North Carolina counties with comparison group in 3 adjacent counties. SUBJECTS: Participants (n = 249) were parents, caregivers, or parental figures for African American youth aged 10 to 14. INTERVENTION: Twelve-session curriculum for participating dyads. MEASURES: Audio computer-assisted self-interview to assess changes at 9 months from baseline in communication about general and sensitive sex topics and overall communication about sex. ANALYSIS: Multivariable models were used to examine the differences between the changes in mean of scores for intervention and comparison groups. RESULTS: Statistically significant differences in changes in mean scores for communication about general sex topics ( P < .0001), communication about sensitive sex topics ( P < .0001), and overall communication about sex ( P < .0001) existed. Differences in change in mean scores remained significant after adjusting baseline scores and other variables in the multivariate models. CONCLUSIONS: In Teach One Reach One intervention, adult participants reported improved communication about sex, an important element to support risk reduction among youth in high-prevalence areas.

Across the Miles: Process and Impacts of Collaboration with a Rural Community Advisory Board in HIV Research.

BACKGROUND: Project Education and Access to Services and Testing (EAST) worked with a community advisory board (CAB) to (1) identify individual-level, provider-level, and community-level factors influencing attitudes about human immunodeficiency virus (HIV) and HIV/acquired immuno-deficiency syndrome (AIDS) research and (2) develop and test a community-based HIV clinical trials educational intervention in six rural counties in the Southeast. OBJECTIVES: We describe the processes and impact of forming and collaborating with a rural, multicommunity CAB. METHODS: CAB members included community leaders, providers, and people living with HIV/AIDS (PLWHA). CAB engagement emphasized respect and confidentiality. Tape-recorded meeting minutes and debriefing notes were used in analysis. RESULTS: The CAB identified physical and social parameters of the communities, built community trust, informed research design and implementation, and helped to navigate the impact of stigma. Major barriers to engagement were distance and geographic dispersion. CONCLUSIONS: CABs can make a critical difference in conducting culturally appropriate and successful research in rural communities.

Applying Cognitive Interviewing to Inform Measurement of Partnership Readiness: A New Approach to Strengthening Community-Academic Research.

BACKGROUND: Partnerships between academic and community-based organizations (CBOs) can richly inform the research process and speed translation of findings. Although immense potential exists to co-conduct research, a better understanding of how to create and sustain equitable relationships between entities with different organizational goals, structures, resources, and expectations is needed. OBJECTIVE: We sought to engage community leaders in the development of an instrument to assess CBOs' interest and capacity to engage with academia in translational research partnerships. METHODS: Leaders from CBOs partnered with our research team in the design of a 50-item instrument to assess organizational experience with applying for federal funding and conducting research studies. Respondents completed a self-administered, paper/pencil survey and a follow-up structured cognitive interview (n = 11). A community advisory board (CAB; n = 8) provided further feedback on the survey through guided discussion. Thematic analysis of the cognitive interviews and a summary of the CAB discussion informed survey revisions. RESULTS: Cognitive interviews and discussion with community leaders identified language and measurement issues for revision. Importantly, they also revealed an unconscious bias on the part of researchers and offered an opportunity, at an early research stage, to address imbalances in the survey perspective and to develop a more collaborative, equitable approach. CONCLUSIONS: Engaging community leaders enhanced face and content validity and served as a means to form relationships with potential community co-investigators in the future. Cognitive interviewing can enable a bidirectional approach to partnerships, starting with instrument development.

Curriculum development to increase minority research literacy for HIV prevention research: a CBPR approach.

BACKGROUND: Minority engagement in HIV prevention research can improve the process and products of research. Using community-based participatory research (CBPR) to develop capacity-building tools can promote community awareness of HIV prevention, clinical research, and community roles in research. OBJECTIVES: We sought to describe a CBPR approach to curriculum development to increase HIV prevention research literacy among Blacks ages 18 to 30. METHODS: Community members and researchers documented the iterative and participatory nature of curriculum development and lessons learned.Results/Lessons Learned: We used specific strategies to support and verify multi-stakeholder engagement, team building, capacity building, and shared decision making. Objective or formal assessments of baseline capacity, ongoing stakeholder engagement, and reinforcing the value of multiple perspectives can promote further equity in curriculum development between researchers and community members. CONCLUSIONS: The iterative process of shared discussion, development, and consensus building strengthened collaboration between stakeholder groups and produced a stronger, more culturally appropriate curriculum to promote HIV prevention research engagement among young Blacks.

Practical steps to community engaged research: from inputs to outcomes.

For decades, the dominant research paradigm has included trials conducted in clinical settings with little involvement from communities. The move toward community engaged research (CEnR) necessitates the inclusion of diverse perspectives to address complex problems. Using a relationship paradigm, CEnR reframes the context, considerations, practical steps, and outcomes of research.

Community-based HIV clinical trials: an integrated approach in underserved, rural, minority communities.

BACKGROUND: Although racial and ethnic minorities have disproportionately high rates of HIV infection, these groups are underrepresented in HIV-related clinical trials. This illustrates the need for more innovation in attempts to engage underrepresented populations in calls for interdisciplinary and translational research. OBJECTIVES: Eleven focus groups and 35 interviews were conducted with people living with HIV/AIDS (PLWHA) to explore the perspectives of rural community leaders, service providers, and PLWHA about bringing HIV-related research, including clinical trials, into rural communities. METHODS: Over a period of 3 months in spring 2007, we collected qualitative data from three sources: Community leaders, service providers, and PLWHA. Text data were analyzed using the constant comparative method and content analysis techniques of theme identification. RESULTS: Respondents want an integrated approach to HIV research that builds trust, meets community needs, and respects their values. They conceptualize HIV research as part of a broader spectrum of HIV testing, prevention, and care, and suggest integrating HIV trials with existing community services, organizations, and structures, engaging various segments of the community, and conducting research using a personal approach. CONCLUSIONS: These findings support calls for more relevant, translational, and engaged research. An integrated approach may be an important innovation to transform the research enterprise to meet these goals and more directly improve the health of individuals.

Community-responsive research priorities: health research infrastructure.

THE PROBLEM: A disconnect exists between research resources and the health and health care needs of people those resources are designed to serve. While a great deal of research is being produced at academic institutions across the country, the topics investigated are often driven by researchers' interests or by funding announcements focused on specific research areas of interest to the funder. PURPOSE OF THE ARTICLE: The purpose of this article is to describe a process that connects community identified health priorities with research funds as well as capacity building efforts. KEY POINTS: The North Carolina Translational and Clinical Sciences Institute (NC TraCS) developed a process to identify the health priorities of North Carolina communities through a partnership with the network of county Healthy Carolinians partnerships. The priorities identified were obesity, youth issues, healthcare delivery/access, mental health/ substance abuse, specific chronic diseases, cancer/tobacco, and injury/ violence. NC TraCS then used these research priorities to guide pilot funding and facilitate research capacity building. CONCLUSIONS: Tapping into an established community-based network and linking researchers to community-identified priorities ensures that NC TraCS addresses the most pressing health needs of North Carolina's residents.

Identifying gaps in HIV prevention services.

Human immunodeficiency virus (HIV) prevention programs and agencies are fighting growing rates of infection with decreasing resources. Identification of gaps in HIV prevention services can help inform prevention funding and program policies. To describe HIV prevention needs in a southern U.S. state, we conducted face-to-face interviews with prevention agencies and persons considered by others in their community to be "influential informants" of the community's HIV prevention services in a sample of counties in North Carolina. Using county as the unit of analysis (n = 10), we investigated differences in gaps by community characteristics, such as disparities in sexually transmitted disease rates. Lack of programs and problems with service program coordination/cooperation were reported frequently by rural counties. The most commonly reported barrier to meeting the needs of persons at risk for HIV was funding, followed by stigma. Findings from this study can inform local and regional planners on how to efficiently target prevention programs, including programs aimed at reducing racial and geographic disparities in sexually transmitted diseases, such as HIV.

Incarceration and sexually transmitted infections: a neighborhood perspective.

The social dynamics of some communities are affected by the loss of significant numbers of people to prison and by the release of others who encounter the challenge of coping with the negative effects of the incarceration experience. The effects on communities are evident, in part, in the high rates of sexually transmitted infections (STIs) in North Carolina (NC) counties that have a high rate of incarceration. In the present study, we examined whether the same associations can be observed at the census tract level in one urban city of NC. To identify the mechanisms by which incarceration can affect the transmission of STIs, we conducted ethnographic interviews with ex-offenders and people who lost a sexual partner to prison. We found that census tract rates of incarceration were consistently associated with gonorrhea rates in the subsequent year. An increase of the percentage of census tract person-time spent in prison from 2.0% to 2.5% corresponded to a gonorrhea rate increase of 7.1 cases per 100,000 person-years. The people interviewed spoke of sexual partnership changes including those left behind finding new partners, in part for help in making financial ends meet; men having sex with men for the first time in prison; and having multiple new partners upon reentry to the community. The statistical associations and stories of the effects of incarceration on sexual relationships provide additional evidence of unintended community health consequences of high rates of incarceration.