Otis L. Owens

It Takes Two to Talk about Prostate Cancer: A Qualitative Assessment of African-American Men’s and Women’s Cancer Communication Practices and Recommendations

Prostate cancer (PrCA) is the most commonly diagnosed nonskin cancer among men. African American (AA) men in South Carolina have a PrCA death rate 150% higher than that of European American (EA) men. This in-depth qualitative research explored AA men’s and women’s current practices, barriers, and recommended strategies for PrCA communication. A purposive sample of 43 AA men and 38 AA spouses/female relatives participated in focus groups (11 male groups; 11 female groups). A 19-item discussion guide was developed. Coding and analyses were driven by the data; recurrent themes within and across groups were examined. Findings revealed AA men and women agreed on key barriers to discussing PrCA; however, they had differing perspectives on which of these were most important. Findings indicate that including AA women in PrCA research and education is needed to address barriers preventing AA men from effectively communicating about PrCA risk and screening with family and health care providers.

Developing Partnerships and Recruiting Dyads for a Prostate Cancer Informed Decision Making Program: Lessons Learned From a Community-Academic-Clinical Team

Prostate cancer (PrCA) is the most commonly diagnosed non-skin cancer among men. PrCA mortality in African-American (AA) men in South Carolina is ~50% higher than for AAs in the U.S as a whole. AA men also have low rates of participation in cancer research. This paper describes partnership development and recruitment efforts of a Community-Academic-Clinical research team for a PrCA education intervention with AA men and women that was designed to address the discordance between high rates of PrCA mortality and limited participation in cancer research. Guided by Vesey’s framework on recruitment and retention of minority groups in research, recruitment strategies were selected and implemented following multiple brainstorming sessions with partners having established community relationships. Based on findings from these sessions culturally appropriate strategies are recommended for recruiting AA men and women for PrCA education research. Community-based research recruitment challenges and lessons learned are presented.

African American men's and women's perceptions of clinical trials research: focusing on prostate cancer among a high-risk population in the South.

While African Americans are at a significantly higher risk for developing certain cancers, they also have low rates of participation in cancer research, particularly clinical trials. This study assessed both African American men’s and African American women’s (1) knowledge of and participation in cancer-related clinical research and (2) barriers to and motivations for participating in clinical research. Data were collected from a total of 81 participants. Phase I of this research consisted of qualitative focus groups (all 81 participants). Phase II included quantitative pre/post survey data from an education program (56 participants). Findings from the study revealed that African American men and women had poor knowledge about clinical trials and the informed consent process, limited experience in participating in clinical trials, and they feared and mistrusted cancer research. Participants identified incentives, assurance of safety, knowledge and awareness, and benefiting others as motivators to participate in clinical trials research.

An Intergenerational Approach to Prostate Cancer Education: Findings from a Pilot Project in the Southeastern USA

African Americans (AA) are more likely to develop and die from cancer than any other racial or ethnic group. This study assessed older and younger/middle-aged African-American (AA) men’s (1) knowledge and attitudes about prostate cancer (PrCA) and PrCA screening, (2) participation in clinical research, and (3) health and cancer-related decision making. Twenty-eight AA men (14 older, mean age 59.8; 14 younger/middle age, mean age 30.4) received a PrCA education program and completed pre/post-education program surveys, as well as qualitative post-education interviews. Younger/middle-aged men were more knowledgeable about PrCA and PrCA screening than older men. Older men reported being invited to participate in a clinical trial more often than younger men but were more likely to report that participation in clinical trials was risky and they did not plan to participate in medical research in the future. Younger/middle-aged men were more willing to participate in a clinical trial in the future and reported fewer barriers to participation in clinical research. There is potential for using intergenerational communication strategies with older/younger AA male dyads in PrCA interventions.

An evaluation of a community-academic-clinical partnership to reduce prostate cancer disparities in the South.

Engaging partners in the planning, implementation, and evaluation of cancer education programs is critical for improving the health of our communities. A 2-year pilot education intervention on prostate cancer decision making and participation in medical research was funded by the National Cancer Institute. The partnership involving community members and clinical staff at a cancer center was used to develop recruitment strategies and plan for the implementation of the intervention with African-American middle-age and older men and female family members. We assessed partners’ perceptions of this community–academic–clinical research collaboration. In year 2, eight project advisory council members were selected among existing partners and year 1 participants to serve as a formal committee. Council members were required to participate in telephone and in person meetings and actively support recruitment/implementation efforts. At the conclusion of the project, 20 individuals (all clinical and community partners, including the eight advisory council members) were invited to complete a survey to assess their perceived impact of the collaboration on the community and provide suggestions for future collaborations. Most partners agreed that their organization benefitted from the collaboration and that various aspects of the advisory council process (e.g., both formal and informal communication) worked well. The most noted accomplishment of the partnership related to leveraging the collaboration to make men more knowledgeable about prostate cancer decision making. Suggested improvements for future collaborations included distributing more frequent updates regarding project successes. Evaluating partners’ perceptions of this collaboration provided important recommendations for future planning, implementation, and evaluation of community-based cancer education programs.

Written and spoken narratives about health and cancer decision making: a novel application of photovoice.

Photovoice is a community-based participatory research method that researchers have used to identify and address individual and community health needs. We developed an abbreviated photovoice project to serve as a supplement to a National Cancer Institute–funded pilot study focusing on prostate cancer (PrCA) that was set in a faith-based African American community in South Carolina. We used photovoice for three reasons: (a) to enhance communication between study participants and researchers, (b) to empower African American men and women to examine their health decisions through photographs, and (c) to better understand how participants from this community make health-related decisions. The 15 individuals participating in the photovoice project were asked to photograph aspects of their community that informed their health-related decisions. Participants provided written and oral narratives to describe the images in a small sample of photographs. Four primary themes emerged in participants’ photographs and narratives: (a) food choices, (b) physical activity practices, (c) community environment and access to care, and (d) influences of spirituality and nature on health. Although written and audio-recorded narratives were similar in content, the audio-recorded responses were more descriptive and emotional. Results suggest that incorporating audio-recorded narratives in community photovoice presentations may have a greater impact than written narratives on health promotion, decision making, and policy makers because of an increased level of detail and personalization. In conclusion, photovoice strengthened the parent study and empowered participants by making them more aware of factors influencing their health decisions.

Digital Solutions for Informed Decision Making: An Academic-Community Partnership for the Development of a Prostate Cancer Decision Aid for African American Men.

African American (AA) men are significantly more likely to die of prostate cancer (PrCA) than other racial groups, and there is a critical need to identify strategies for providing information about PrCA screening and the importance of informed decision making (IDM). To assess whether a computer-based IDM intervention for PrCA screening would be appropriate for AA men, this formative evaluation study examined their (1) PrCA risk and screening knowledge; (2) decision-making processes for PrCA screening; (3) usage of, attitudes toward, and access to interactive communication technologies (ICTs); and (4) perceptions regarding a future, novel, computer-based PrCA education intervention. A purposive convenience sample of 39 AA men aged 37 to 66 years in the Southeastern United States was recruited through faith-based organizations to participate in one of six 90-minute focus groups and complete a 45-item descriptive survey. Participants were generally knowledgeable about PrCA. However, few engaged in IDM with their doctor and few were informed about the associated risks and uncertainties of PrCA screening. Most participants used ICTs on a daily basis for various purposes including health information seeking. Most participants were open to a novel, computer-based intervention if the system was easy to use and its animated avatars were culturally appropriate. Because study participants had low exposure to IDM for PrCA, but frequently used ICTs, IDM interventions using ICTs (e.g., computers) hold promise for AA men and should be explored for feasibility and effectiveness. These interventions should aim to increase PrCA screening knowledge and stress the importance of participating in IDM with doctors.

Innovative and Community-Guided Evaluation and Dissemination of a Prostate Cancer Education Program for African-American Men and Women

African Americans (AA) are more likely to develop and die from cancer than any other racial or ethnic group. The aims of this research were to (1) evaluate current education materials being implemented in a community-based prostate cancer education program for AA communities, (2) refine materials based on findings from aim 1, (3) share updated materials with participants from aim 1 for additional improvements, and (4) disseminate and evaluate the improved education program through a statewide videoconference with AA men and women. AA individuals evaluated the current education program through a mail survey (n = 32) and community forum (n = 38). Participants reported that the existing prostate cancer education program content could be understood by lay persons, but recommendations for improvement were identified. They included the following: defining unknown and/or scientific terminology, increasing readability by increasing font size and enlarging images, and including more recent and relevant statistics. Following refinement of the education materials based on survey and forum feedback, a statewide videoconference was implemented. Following the videoconference, participants (25 men; 3 women) reported that they would encourage others to learn more about prostate cancer, talk to their doctor about whether or not to get screened for prostate cancer, and recommend the conference to others. There is great potential for using this type of iterative approach to education program development with community and clinical partners for others conducting similar work.

An Iterative Process for Developing and Evaluating a Computer-Based Prostate Cancer Decision Aid for African American Men

Background. The disproportionate burden of prostate cancer (PrCA) among African American (AA) men amplifies the need for informed decisions about PrCA screening. To create a computer-based decision aid (CBDA) for increasing prostate knowledge, decision self-efficacy, and intention to make an informed decision, the study implemented an iterative approach to develop a culturally appropriate CBDA. Method. A short CBDA prototype containing PrCA information and interactive activities was developed. A sample of 21 AA men aged 37 to 66 years in South Carolina participated in one of seven 90-minute focus groups and completed a 36-item survey. Updates were made to the CBDA based on participant feedback. The CBDA and heuristic evaluation surveys were then distributed to six expert reviewers. Ten men were also randomly selected from our sample population to participate in interviews regarding usability of the CBDA. Results. Participants and expert reviewers expressed consensus on many features of the CBDA, but some suggested changes to the format and graphics in order to enhance the CBDA’s effectiveness. Development and evaluation processes and implications are discussed. Conclusions. Using CBDAs for informed decision making may be appropriate for AA men. It is important to engage the community and experts in an iterative development process to ensure that a CBDA is relevant for priority populations.

Dodging the Debate and Dealing with the Facts: Using Research and the Public Library to Promote Understanding of the Affordable Care Act

This study reports on an innovative, community-based effort to promote awareness and understanding of the Affordable Care Act (ACA) through a public library system in one southeastern county. Specifically, this study assesses the current knowledge, perceptions, and communication sources and needs regarding the ACA among adults in one southeastern county in an effort to determine the feasibility of establishing the public library as a trusted and nonpartisan source of ACA-related information. Results of formative research are discussed, and campaign development activities are chronicled. Findings indicate that public libraries can serve as a hub of information on important health-related issues through their efforts to communicate with, educate, and engage with the communities they serve.