Connie Blumenthal

Trust, Benefit, Satisfaction, and Burden: A Randomized Controlled Trial to Reduce Cancer Risk Through African- American Churches

BACKGROUND: Community-based participatory research (CBPR) approaches that actively engage communities in a study are assumed to lead to relevant findings, trusting relationships, and greater satisfaction with the research process.OBJECTIVE: To examine community members’ perceptions of trust, benefit, satisfaction, and burden associated with their participation.DESIGN, SETTING, AND PARTICIPANTS: A randomized controlled trial tested a cancer prevention intervention in members of African-American churches. Data were collected at baseline and 1-year follow-up.MEASUREMENTS: Subscales measured perception of trust in the research project and the project team, benefit from involvement with the project, satisfaction with the project and the team, and perception of burden associated with participation.MAIN RESULTS: Overall, we found high levels of trust, perceived benefit, and satisfaction, and low perceived burden among community members in Partnership to Reach African Americans to Increase Smart Eating. In bivariate analyses, participants in the intervention group reported more perceived benefit and trust (P<.05). Participants in smaller churches reported more benefit, satisfaction and trust, while participants from churches without recent health activities perceived greater benefit, greater satisfaction, and lower burden with the project and the team (P<.05). Participants whose pastors had less educational attainment noted higher benefit and satisfaction; those whose pastors were making personal lifestyle changes noted higher benefit and satisfaction, but also reported higher burden (P<.05).CONCLUSIONS: A randomized clinical trial designed with a CBPR approach was associated with high levels of trust and a perceived benefit of satisfaction with the research process. Understanding variations in responses to a research partnership will be helpful in guiding the design and implementation of future CBPR efforts.

THE ROLE OF RACE AND TRUST IN TISSUE/BLOOD DONATION FOR GENETIC RESEARCH

Background: Public willingness to donate tissue samples is critical to genetic research. Prior work has linked minority status and mistrust with less willingness to provide specimens. Some have suggested recruitment of prior research participants to address these barriers. We present data from a genetic epidemiology study with a request for blood and/or saliva specimens to (1) measure willingness to donate tissue/blood samples, (2) identify demographic, trust, and other factors associated with willingness to donate samples, and (3) measure willingness to participate in future genetic research.Methods: We surveyed participants in the North Carolina Colorectal Cancer Study, which included biologic sample collection from consenting participants. Participants were later asked about sample provision; trust in researchers, and future research participation.Results: African Americans were less likely to give a blood sample, when compared with whites (21% vs. 13%, P < 0.05). After controlling for “trust,” this difference was no longer statistically significant (17% vs. 13%, P = 0.27). Those who had given samples were more likely to express willingness to participate in future research.Conclusion: Despite prior participation in a genetic epidemiology study, factors associated with provision of tissue samples reflected many previously identified demographic factors (race and trust). Interventions to improve and demonstrate the trustworthiness of the research team and recruitment of subjects with a record of sample donation might enhance future study participation.

Great expectations: views of genetic research participants regarding current and future genetic studies

Purpose: Recruitment of prior participants in genetic research is one strategy suggested to maximize efficient use of research dollars in gene-environment studies. We explored attitudes toward genetic research participation among people in a case-control genetic epidemiology study of colon cancer, the North Carolina Colorectal Cancer Study (NCCCS).Methods: Quantitative and qualitative cross-sectional analysis of 801 NCCCS participants.Results: Participants were “very positive” (63%) or “positive” (32%) about genetic research, and “very likely” (49%) or “somewhat likely” (40%) to participate in future genetic research. Variables significantly associated with feeling “very positive” were white race, more education, nonreligious, hearing “a lot” about genetic research, and two measures of trust in medical research. Except for race and education, the same variables were significantly associated with being “very likely” to participate in future studies. Qualitatively, “good things” for self and family included discovering causes and cures for cancer, and the value of genetic information. Many could not list “bad things”; those who did mentioned anxiety, “knowing too much,” losing confidentiality, or abuse of information.Conclusions: Despite very positive attitudes of these participants toward genetic research, there is significant variation based on participant characteristics. These findings should encourage and caution researchers attempting to recruit prior participants into genetic studies.

Project GRACE: A Staged Approach to Development of a Community—Academic Partnership to Address HIV in Rural African American Communities

The HIV epidemic is a health crisis in rural African American communities in the Southeast United States; however, to date little attention has been paid to community—academic collaborations to address HIV in these communities. Interventions that use a community-based participatory research (CBPR) approach to address individual, social, and physical environmental factors have great potential for improving community health. Project GRACE (Growing, Reaching, Advocating for Change and Empowerment) uses a CBPR approach to develop culturally sensitive, feasible, and sustainable interventions to prevent the spread of HIV in rural African American communities. This article describes a staged approach to community—academic partnership: initial mobilization, establishment of organizational structure, capacity building for action, and planning for action. Strategies for engaging rural community members at each stage are discussed; challenges faced and lessons learned are also described. Careful attention to partnership development has resulted in a collaborative approach that has mutually benefited both the academic and community partners.

Intervention mapping as a participatory approach to developing an HIV prevention intervention in rural African American communities.

Southeastern states are among the hardest hit by the HIV epidemic in this country, and racial disparities in HIV rates are high in this region. This is particularly true in our communities of interest in rural eastern North Carolina. Although most recent efforts to prevent HIV attempt to address multiple contributing factors, we have found few multilevel HIV interventions that have been developed, tailored or tested in rural communities for African Americans. We describe how Project GRACE integrated intervention mapping (IM) methodology with community-based participatory research (CBPR) principles to develop a multilevel, multigenerational HIV prevention intervention. IM was carried out in a series of steps from review of relevant data through producing program components. Through the IM process, all collaborators agreed that we needed a family-based intervention involving youth and their caregivers. We found that the structured approach of IM can be adapted to incorporate the principles of CBPR.

Asking the Right Questions: Views on Genetic Variation Research Among Black and White Research Participants

BackgroundGenetic variation research (GVR) may raise concerns about misuse of information and discrimination. Seemingly contradictory positive views about GVR have also been reported.ObjectiveTo dissect this inconsistency, our objectives were to: (1) explore open-ended views of GVR and (2) quantify views of and willingness to participate in GVR by race.DesignCross-sectional study.Participants801 African-American and white prior participants in a case-control genetic epidemiology study of colon cancer risks (NCCCS).MeasuresQualitative measures evaluated responses to questions about good and bad things about GVR. Quantitative measures evaluated positive and negative perceptions, perceptions of discrimination, and likelihood of future participation by race.ResultsOpen-ended queries about GVR resulted in few “negative” responses. In closed-ended questions, however, African Americans were more likely to feel that such research would: result in higher insurance (41% vs. 30%, p = 0.008), not benefit minorities (29% vs. 14%, p=<0.001), reinforce racism (32% vs. 20%, p = 0.002), and use minorities as guinea pigs (27% vs. 6%, p < 0.001). Overall, after adjustment for potential confounding factors, African-American race remained inversely associated with feeling “very positive” about GVR (46% vs. 57%, p = 0.035). In contrast, African Americans were as likely as whites to express willingness to participate in future GVR studies (46%).ConclusionsOpen-ended questions about GVR were unlikely to spontaneously generate “negative” responses. In contrast, when presented specific examples of potentially negative implications, more respondents agreed, and minorities were more likely to express concerns. This suggests that while participants appear generally positive about GVR, their inability to articulate views regarding these complex concepts may require that researchers engage lay audiences, ensure accurate understanding, and provide them with language to express concerns.

Studying Genetic Research Participants : Lessons from the Learning About Research in North Carolina Study

Given the prohibitive cost of recruiting large and diverse populations for genetic explorations in cancer research, there has been a call for genetic studies to engage existing cohorts of research participants. This strategy could lead to more efficient recruitment and potentially result in significant advances in the understanding of cancer etiology and treatment. The Learning About Research in North Carolina (LeARN) study responded to the National Human Genome Research Institute interest in research on how study participants from diverse populations who had participated in genetic research perceived the risks and benefits of participating in combined epidemiologic-genetic research, how well they understand the purpose of the research and the uses to which the research results may be put, and how involvement in such research affects perceptions of disease causality. In this article, we give an overview of the LeARN study, summarizing the methods we used, challenges we encountered, and lessons learned about recruiting participants who have previously participated in genetic research. (Cancer Epidemiol Biomarkers Prev 2008;17(8):2019–24)

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.

Building Capacity in Community-Based Participatory Research Partnerships Through a Focus on Process and Multiculturalism

Background: In health research, investigators and funders are emphasizing the importance of collaboration between communities and academic institutions to achieve health equity. Although the principles underlying community–academic partnered research have been well-articulated, the processes by which partnerships integrate these principles when working across cultural differences are not as well described.Objectives: We present how Project GRACE (Growing, Reaching, Advocating for Change and Empowerment) integrated participatory research principles with the process of building individual and partnership capacity.Methods: We worked with Vigorous Interventions In Ongoing Natural Settings (VISIONS) Inc., a process consultant and training organization, to develop a capacity building model. We present the conceptual framework and multicultural process of change (MPOC) that was used to build individual and partnership capacity to address health disparities.Conclusions: The process and capacity building model provides a common language, approach, and toolset to understand differences and the dynamics of inequity. These tools can be used by other partnerships in the conduct of research to achieve health equity.

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

ABSTRACT 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 ones 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.