Development of a Community Advisory Board to Guide Research About Cancer Disparities in the Black and African American Community.

BACKGROUND: Researchers who aim to serve a community (i.e., racial, gender, ethnic group) of which they are not a part must do foundational work to understand that community and build intentional, thoughtful collaborations with the community to guide their work. OBJECTIVES: This article aims to share a case exemplar of the formation period of a community advisory board (CAB) that conducts research focused on improving health equity in the Black and African American community. METHODS: CAB development has three phases: formation, operation, and maintenance. Previous work has described and provided best practices for each phase. This article focused on the first phase, formation. Guided by critical race theory, with guidance from her mentor, a researcher partnered with a research assistant and a community health educator to develop a CAB. Details of their processes-which apply to the formation of other CABs-are presented. DISCUSSION: During the board formation period, the major focus has been relationship building and developing a shared mission: "To work in partnership with researchers at the University of North Carolina to reduce cancer disparities in Black/African American communities by informing research and program development. As a liaison between the community and researchers, the Community Advisory Board will identify community needs, promote evidence-based interventions and information, raise awareness about health disparities in communities, and educate researchers." CAB formation is nuanced and unique, dependent upon the nature of the research to be conducted and the characteristics of the community and researchers. This case exemplar provides valuable insights to other researchers working to build community partnerships.

Identification and Characterization of Peer Support for Cancer Prevention and Care: A Practice Review.

Research across the cancer care continuum indicates peer support can improve patient outcomes, yet little is known about how cancer peer support programs are implemented in practice. This study aimed to describe cancer peer support programs in "real world" (i.e., non-research) settings. A web search identified 100 programs in a wide variety of settings and locations; 48 published contact information on their website and were invited to participate in semi-structured interviews. Twenty-nine program leaders participated. From the interviews, we observed eight primary themes, which centered on challenges and responses regarding training and content of peer support services as well as program organization and support. Obstacles include inconsistent funding, reliance on volunteers, and physician concerns about peer supporters' advice to patients, while increasing diversity, reach, and accessibility are future priorities. Peer support should be recognized and funded as a routine part of cancer care in order to expand its reach and address priorities such as increasing the diversity of supporters and those they help.

Peer support opportunities across the cancer care continuum: a systematic scoping review of recent peer-reviewed literature.

OBJECTIVE: Evidence suggests peer support (PS) is as an effective strategy for enhancing prevention and control of chronic and infectious diseases, including cancer. This systematic scoping review examines the range and variety of interventions on the use of PS across the cancer care continuum. METHOD: We used a broad definition of PS to capture a wide-range of interventions and characterize the current status of the field. Literature searches were conducted using PubMed, SCOPUS, and CINAHL to identify relevant articles published from January 2011 to June 2016. We screened the title and abstracts of 2087 articles, followed by full-text screening of 420 articles, resulting in a final sample of 242 articles of which the most recent 100 articles were reviewed (published June 2014 to May 2016). RESULTS: A number of the recent intervention studies focused on breast cancer (32%, breast cancer only) or multiple cancer sites (23%). Although the interventions spanned all phases of the cancer care continuum, only 2% targeted end-of-life care. Seventy-six percent focused on clinical outcomes (e.g., screening, treatment adherence) and 72% on reducing health disparities. Interventions were primarily phone-based (44%) or delivered in a clinic setting (44%). Only a few studies (22%) described the impact of providing PS on peer supporters. CONCLUSION: PS appears to be a widely used approach to address needs across the cancer care continuum, with many opportunities to expand its reach.

Project ACCRUE: Exploring Options to Increase Awareness of AIDS Malignancy Consortium Clinical Trials in North Carolina.

BACKGROUND Longer lifespans conferred by antiretroviral therapy result in more time exposed to cancer risk for people living with HIV/AIDS (PLWHA). Given limited diversity in AIDS Malignancy Consortium (AMC) clinical trials, there is need for new approaches to educate PLWHA in order to improve awareness and participation in AMC trials.METHODS With input from a community advisory board, Project ACCRUE (AMC Clinical Trials at Carolina Ramp Up Enrollment) conducted a key informant interview with service providers; online organizational surveys of AMC trial awareness and resource needs; and "lunch and learn" educational sessions, including pre- and post-intervention knowledge assessments.RESULTS Providers indicated that transportation, mistrust of the medical community, and affordability were barriers to trial participation, while printed educational materials could facilitate trial recruitment. Providers indicated that their clients had concerns about participating in trials, but also recognized several benefits of participation including access to medical personnel and treatment, receipt of monetary incentives, and a feeling of satisfaction from helping others. In lunch and learn sessions, use of an audience response system to collect questionnaire data improved scores on knowledge-based items [S(55) = 460; P < .0001] compared to a pencil and paper test [S(20) = 12.5; P = .6541].LIMITATIONS Generalizability may have been compromised by the small sample size. Long-term recall was not measured, and the short retest interval may have impacted post-intervention assessments.CONCLUSIONS Service providers recognize the benefits of working with researchers to educate patients about HIV-related cancers and participation in clinical trials. Lunch and learn sessions improved knowledge and perceptions about clinical trials for PLWHA.

Prostate Cancer Ambassadors: Process and Outcomes of a Prostate Cancer Informed Decision-Making Training Program.

African American men bear a higher burden of prostate cancer than Caucasian men, but knowledge about how to make an informed decision about prostate cancer screening is limited. A lay health advisor model was used to train "Prostate Cancer Ambassadors" on prostate cancer risk and symptoms, how to make an informed decision for prostate-specific antigen screening, and how to deliver the information to members of their community. Training consisted of two, 6-hour interactive sessions and was implemented in three predominantly African American communities over an 8-month period between 2013 and 2014. Following training, Ambassadors committed to contacting at least 10 people within 3 months using a toolkit composed of wallet-sized informational cards for distribution, a slide presentation, and a flip chart. Thirty-two Ambassadors were trained, with more than half being females (59%) and half reporting a family history of prostate cancer. Prostate cancer knowledge improved significantly among Ambassadors ( p ≤ .0001). Self-efficacy improved significantly for performing outreach tasks ( p < .0001), and among women in helping a loved one with making an informed decision ( p = .005). There was also an improvement in collective efficacy in team members ( p = .0003). Twenty-nine of the Ambassadors fulfilled their commitment to reach at least 10 people (average number of contacts per Ambassador was 11). In total, 355 individuals were reached with the prostate cancer information. The Ambassador training program proved successful in training Ambassadors to reach communities about prostate cancer and how to make an informed decision about screening.

Prostate Cancer Ambassadors: Enhancing a Theory-Informed Training Program for Informed Decision-Making.

Despite the high burden of prostate cancer in African American communities, there is a paucity of knowledge about prostate health. This paper describes the enhancement of a curriculum for training lay health advisors, called prostate cancer ambassadors, on informed decision-making for prostate cancer screening. Adult learning theory informed the structuring of the training sessions to be interactive, self-directed, and engaging. Trainings were developed in a manner that made the material relevant to the learners and encouraged co-learning. The research team developed strategies, such as using discussions and interactive activities, to help community members weigh the pros and cons of prostate-specific antigen (PSA) screening and to make an informed decision about screening. Furthermore, activities were developed to bolster four social cognitive theory constructs: observational learning, self-efficacy for presenting information to the community and for making an informed decision themselves, collective efficacy for presenting information to the community, and outcome expectations from those presentations. Games, discussions, and debates were included to make learning fun and encourage discovery. Practice sessions and team-building activities were designed to build self-efficacy for sharing information about informed decision-making. Topics added to the original curriculum included updates on prostate cancer screening, informed decision-making for screening, skills for being a lay health advisor, and ethics. This dynamic model and approach to lay health advisor (ambassador) training is flexible: while it was tailored for use with prostate cancer education, it can be adjusted for use with other types of cancer and even other diseases.

African Americans' Perceptions of Prostate-Specific Antigen Prostate Cancer Screening.

BACKGROUND: In 2012, the U.S. Preventive Services Task Force released a hotly debated recommendation against prostate-specific antigen testing for all men. The present research examines African Americans' beliefs about their susceptibility to prostate cancer (PCa) and the effectiveness of prostate-specific antigen testing in the context of the controversy surrounding this recommendation. METHOD: This study used a qualitative design to examine perceptions regarding susceptibility and screening. Data were collected at a community health center and three predominantly African American churches in North Carolina. Study participants were 46 African American men and women who attended one of four "listening sessions" for pretesting PCa educational materials (average age = 55 years). Listening sessions of 1.5-hour duration were conducted to pretest materials; while presenting the materials, researchers probed beliefs and knowledge about PCa screening. The sessions were recorded and transcribed, and the transcripts were qualitatively analyzed using grounded theory. RESULTS: The four emergent themes indicated that participants (1) cited behavioral, psychosocial, and biological reasons why African American men have higher PCa risk compared with others; (2) knew about the controversy and had varying responses and intentions; (3) believed screening could save lives, so it should be used regardless of the 2012 recommendation; and (4) felt that women can help men go to the doctor and make screening decisions. CONCLUSION: Health education efforts to help community members understand health controversies, screening options, and how to make informed screening decisions are critical.