Benita Weathers

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.

Varying the message source in computer-tailored nutrition education

The effect of message source on message recall and perceived credibility was examined in a randomized study comparing two different computer-tailored bulletins promoting fruit and vegetable consumption among rural African American church members. An expert oriented (EXP) bulletin was compared with a spiritual and pastor-oriented (SPIR) bulletin and a control group. Both bulletins had the same format and used an identical set of dietary and psychosocial variables for tailoring. At follow-up, the majority of both intervention groups recalled receiving the bulletin, however message trust was higher in the SPIR group (P < 0.05). The EXP group reported higher trust of health and nutrition information coming from scientific research (P < 0.01), and the SPIR group reported higher trust of information coming from the pastor (P < 0.05). Both bulletin groups increased fruit and vegetable consumption significantly compared to the control group; however, this difference could not be solely attributed to the tailored intervention which was part of a multi-component program.

Racial Differences in Medical Mistrust among Men Diagnosed with Prostate Cancer

Mistrust of healthcare providers and systems is a significant barrier to quality healthcare. However, limited empirical data are available on perceptions of medical mistrust among individuals who are diagnosed with cancer. The objective of this study was to identify sociodemographic, clinical, and cultural determinants of mistrust among men diagnosed with prostate cancer.

Attitudes about genetic testing and genetic testing intentions in African American women at increased risk for hereditary breast cancer

Purpose: To evaluate attitudes about the benefits, limitations, and risks of genetic testing for BRCA1 and BRCA2 (BRCA1/2) mutations and explore testing intentions in African American women at increased risk for hereditary breast cancer.Methods: Attitudes and intentions were evaluated by telephone in African American women (n = 74) at moderate and high risk for having a BRCA1/2 mutation.Results: Attitudes about the benefits of genetic testing were endorsed at a higher rate relative to limitations and risks; however, only 30% of respondents indicated that they would definitely have testing. In regression analysis, women most likely to be considering testing were those with fatalistic beliefs about cancer and those who believed they had a BRCA1/2 mutation. Women who had two or more affected relatives were also most likely to be considering testing. Women who had a personal history of cancer and those who believed they were at high risk for developing breast cancer were most likely to report greater limitations and risks. Pros scores were higher among women older than age 50 and those who were unemployed.Conclusion: Although African American women at moderate and high risk for BRCA1/2 mutations report favorable attitudes about genetic testing, interest in testing may be limited. Women affected with cancer and those who believe they are at a higher risk for developing breast cancer may be most concerned about the negative consequences of testing. Increased attention may need to be given to beliefs about genetic testing and testing motivations during genetic counseling with African American women.

Long-Term Reactions to Genetic Testing for BRCA1 and BRCA2 Mutations: Does Time Heal Women's Concerns?

PURPOSE Short-term reactions to BRCA1 and BRCA2 (BRCA1/2) genetic test results have been described in several reports, but the long-terms effects of testing have not been examined extensively. METHODS We conducted an observational study to characterize the long-term impact of genetic testing for BRCA1/2 mutations in 167 women who had received genetic test results at least 4 years ago. We also evaluated the relationship between genetic testing-specific reactions and breast and ovarian cancer screening to determine the behavioral significance of adverse reactions. RESULTS Seventy-four percent of women were not experiencing any distress regarding their test result, 41% were not experiencing any uncertainty, and 51% had a score for positive experiences that was suggestive of low levels of adverse reactions in terms of family support and communication. Mutation carriers (odds ratio, 3.96; 95% CI, 1.44 to 10.89; P = .01) were most likely to experience distress. Only less time since disclosure was related significantly to experiencing uncertainty (odds ratio, 0.62; 95% CI, 0.44 to 0.88; P = .008). In terms of cancer screening, 81% of women had a mammogram during the year before study enrollment, 25% had magnetic resonance imaging (MRI), 20% had a transvaginal ultrasound, and 20% had a CA-125. Experiencing distress was associated significantly with having a CA-125 (χ(2) = 3.89, P = .05), and uncertainty was associated with having an MRI (χ(2) = 8.90, P = .003). CONCLUSION Our findings show that women are not likely to experience genetic testing concerns several years after receiving BRCA1/2 test results; distress and uncertainty are not likely to have adverse effects on screening among women at risk for hereditary disease.

Recruiting African American Women to Participate in Hereditary Breast Cancer Research

PURPOSE This study evaluated the process of recruiting African American women to participate in genetic counseling research for BRCA1 and BRCA2 (BRCA1/2) mutations with respect to referral, study enrollment, and participation in genetic counseling. PATIENTS AND METHODS African American women (n = 783) were referred for study enrollment. RESULTS Of 783 referrals, 164 (21%) women were eligible for enrollment. Eligible women were most likely to be referred from oncology clinics (44%) and were least likely to be referred from general medical practices (11%; chi(2) = 96.80; P = .0001). Overall, 62% of eligible women enrolled onto the study and 50% of enrollees completed genetic counseling. Women with a stronger family history of cancer (odds ratio [OR] = 3.18; 95% CI, 1.36 to 7.44; P = .01) and those referred from oncology clinics and community oncology resources (OR = 2.97; 95% CI, 1.34 to 6.58; P = .01) were most likely to enroll onto the study. Referral from oncology clinics was associated significantly with participation in genetic counseling (OR = 5.46; 95% CI, 1.44 to 20.60; P = .01). CONCLUSION Despite receiving a large number of referrals, only a small subset of women were eligible for enrollment. Oncology settings were the most effective at identifying eligible African American women and general medical practices were the least effective. Factors associated with enrollment included having a stronger family history of cancer and being referred from oncology clinics and community oncology resources. Referral from oncology clinics was the only factor associated significantly with participation in genetic counseling. Education about hereditary breast cancer may be needed among primary care providers to enhance appropriate referral of African American women to genetic counseling for BRCA1/2 mutations.

The Praise! Project: A Church-Based Nutrition Intervention Designed for Cultural Appropriateness, Sustainability, and Diffusion

Cancer prevention research has inadequately reached the African American community despite a higher risk for cancer and many other chronic diseases. Reasons for this failure include historical mistrust of research and medical institutions; lack of culturally relevant interventions; and a failure to design and implement interventions that “give back” to the community. The Partnership to Reach African Americans to Increase Smart Eating (PRAISE!) project is a National Cancer Institute-funded study that developed and tested a nutrition intervention program in partnership with African American churches. Sixty churches and over 1300 individuals participated in this 5 year randomized controlled trial. In this article, the authors describe the design and implementation of the PRAISE! intervention, building on the strengths of the African American church to create a community-university partnership to enhance cultural relevance of the intervention and foster the potential for long term sustainability and diffusion in the African American community.

Sociocultural determinants of men's reactions to prostate cancer diagnosis.

Objective: To develop a better understanding of how men react to being diagnosed with prostate cancer and identify factors that influence these responses, we conducted an observational study to identify sociocultural predictors of mens psychological reactions.

Experiences with weight change in African-American breast cancer survivors.

Abstract:  Although weight gain is a common side effect of breast cancer treatment, limited empirical data are available on how African‐American breast cancer survivors react to changes in their weight following diagnosis and treatment. The purpose of this study was to explore psychological and behavioral reactions to weight change in African‐American breast cancer survivors. We conducted a qualitative study to explore reactions to weight change following diagnosis and treatment in 34 African‐American breast cancer survivors. Forty‐seven percent of women reported gaining weight, 32% reported weight loss, and 21% reported no changes in their weight. Regardless of whether women gained or lost weight, these changes were viewed as stressors that caused psychological distress and health concerns. However, some women had positive reactions to weight loss, especially if they had been heavy prior to diagnosis. Women exercised and changed their dietary behaviors following treatment. Despite this, women reported being frustrated with not being able to control changes in their weight. These results suggest that changes in weight may be a critical component of breast cancer survivorship in African‐American women. It may be important to provide African‐American breast cancer survivors with information about the causes and implications of weight change and strategies for weight control after treatment as part of their follow‐up care.

Psychological functioning in African American women at an increased risk of hereditary breast and ovarian cancer

Despite attention to psychological issues during genetic counselling and testing for hereditary breast and ovarian cancer risk, limited information is available on cancer‐specific distress among African American women being targeted for participation in counselling and testing. Therefore, the purpose of this study is to examine cancer‐specific distress in African American women at an increased risk of hereditary breast and ovarian cancer and to identify factors having significant associations with distress in this population. Respondents were 141 African American women identified for participation in genetic counselling and testing for BRCA1/2 mutations. Overall, respondents reported moderate levels of cancer‐specific distress. Younger age (coefficient = 6.0, p = 0.001), being unemployed (coefficient = −5.0, p = 0.01), and having a personal history of cancer (coefficient = 5.0, p = 0.02) had significant associations with intrusion. Younger age was also associated significantly with greater avoidance (r = 6.0, p = 0.02). These results suggest that African American women aged 50 and younger, those who are unemployed and women with a personal history of breast or ovarian cancer may be the most vulnerable to experiencing elevated levels of distress during genetic counselling and testing. Greater attention to psychological issues, including concerns about cancer and cancer risks, may be needed during genetic counselling and testing for BRCA1/2 mutations with these women.