Pressey, Shannon

Prostate cancer represents a significant health disparity among Black men, who experience higher rates of both incidence and mortality compared to other racial groups. Understanding the complex interplay of cultural, familial, and socioeconomic factors that shape health behaviors is essential for the development of effective interventions. This study sought to explore the lived experiences of ethnically diverse Black men with prostate cancer, focusing on how cultural context, family history, and spirituality influence health decisions and engagement with care. Through a secondary analysis of existing data, personal narratives from 32 Black prostate cancer survivors, primarily U.S.-born Black men, were examined to identify recurring themes that revealed the multifaceted challenges and motivations these men face. The analysis uncovered eight key themes that reflect a complex landscape, including medical distrust fueled by cultural perceptions and past negative experiences, the dual influence of family history on seeking early care versus hesitation, and the role of spirituality as a guiding force in health decisions. Additionally, financial constraints and limited access to comprehensive health information emerged as critical factors affecting engagement with preventive care. The findings underscore the need for culturally sensitive approaches that acknowledge the diverse experiences of Black men in their prostate cancer journey. By understanding the influence of family dynamics, spirituality, and socioeconomic challenges, future research can create targeted interventions that promote informed decision-making and help reduce disparities in prostate cancer outcomes.

Objectives Communication barriers, such as channels, comfort, and location, can negatively impact Black prostate cancer survivors’ experiences and health outcomes after treatment. Addressing these barriers promotes a survivor-centric approach that views survivors as active partners in their care. This study explored the communication preferences of Black prostate cancer survivors, focusing on preferred channels, sources, and locations for enhanced quality of life. Design Using grounded theory methodology, we conducted engaged in-depth interviews with 7 Black prostate cancer survivors, centering on their post-treatment experiences. We analyzed participant transcripts to develop codes and themes. Communication accommodation theory (CAT) was applied to examine how survivors adapt their communication styles to navigate barriers and improve their quality of life. CAT helped identify key patterns of survivors’ convergence and divergence in their communication with healthcare providers, crucial for developing survivor-centric communication strategies. Results The analysis revealed the importance of acknowledging cultural and racial perspectives in post-treatment survivorship. Themes extracted from the transcripts included communication barriers, preferences for information channels, and favored locations for sharing information. Survivors expressed a preference for a balance between face-to-face interaction and telehealth, with environments that provide safety and support playing a key role in encouraging vulnerability and open dialogue. Inclusive healthcare practices were seen as essential in empowering Black survivors to engage in meaningful communication without feeling silenced or undervalued, thus fostering a dignified quality of life. Conclusion Tailoring post-treatment communication practices to incorporate cultural sensitivity, inclusive healthcare, and safe spaces is pivotal to supporting Black survivors. These findings provide a pathway to improving survivors’ experiences and empower them to actively shape their survivorship journey. Moreover, they highlight Black men’s need for trustworthy communication with healthcare providers and peers during the post-treatment period, emphasizing the importance of direct, personalized interactions.

Abstract Introduction: Black men experience a significant burden and face greater hurdles in the prevention, detection, treatment, and survival of prostate cancer (CaP). To address barriers and systemic issues associated with CaP, we have established Community Living Lab (CoLLab) Learning Health Systems through a partnership with the American Legion Post (ALP) and Mayo Clinic. The focus is on providing comprehensive prostate health resources, education, amenities, and community health services (REACH). This initiative represents a proactive approach to addressing health disparities in prostate cancer prevention, detection, and treatment to improve CaP health equity for Black men. This study has three primary aims: (1) Co-develop a user-centric CoLLab Learning Health System with collaborating ALPs, (2) Evaluate the impact of the CoLLab Learning Health System using a pretest-posttest design, and (3) Explore the feasibility of replicating the CoLLab Learning Health System in Black communities nationally. Methods: Three ALPs in Northeast Florida are currently included in this pilot study. The study timeline spans 30 months, from October 2023 to March 2026. The target recruitment is 150 Black men aged 30 to 80 years. Community Health Workers (CHWs) are currently recruiting participants to complete the ALP Neighborhood assessment four times over 12 months to measure changes in CaP-related knowledge, attitudes, health beliefs, perceived control, intentions, and cues to action. Participants will be able to access prostate health REACH services at the designated ALPs through education, navigation, and support services. The program will be continuously evaluated for continuous improvement. The reach of the prostate health REACH services, including extent and patterns of use, demographics of participants reached, and successful navigation for social determinants of health (SDOH), clinical trials, and healthcare, will be evaluated. Additionally, participation in the Community Research Registry, indicating interest in being matched with clinical trials at Mayo Clinic, will be assessed. Results: To date, we have trained 10 CHWs for the study who will serve as community navigators to provide REACH services at their designated ALPs. We have had 49 Black men recruited into the study, and they have completed the baseline assessment at various events held at the ALPs. CaP survivors support group, led by ALP, has begun providing survivorship support services, including healthcare navigation, wellness programs, and grocery distribution to Black men and their households in the community surrounding the ALPs. Conclusion: The CoLLab initiative represents a proactive approach to addressing health disparities and improving outcomes for Black men in CaP prevention, detection, treatment, and survivorship. This study represents a crucial step towards eliminating CaP disparities experienced by Black men, contributing to improved health equity and outcomes in this population. Citation Format: Floyd B Willis, Collisa Mahin, Opeyemi O Bolajoko, Caleb Ramirez, Shannon Pressey, Shaina Flynn, Arnold J Merriweather, Toshiko Moultrie, Vermelle Smith, Wayne Ford, Derry Green. Utilizing Community Living Labs (CoLLab) to address prostate cancer disparities in Black men: An innovative partnership with the American Legion Post and Mayo Clinic [abstract]. In: Proceedings of the 17th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2024 Sep 21-24; Los Angeles, CA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2024;33(9 Suppl):Abstract nr B073.

Abstract Introduction: In an effort to ensure an all-inclusive initiative that would close the disparity gap among the immigrant communities in Florida, we developed a pilot project under the Inclusive Cancer Care Research Equity (iCCaRE) for Black Men Consortium with generous support from the Mayo Clinic Comprehensive Cancer Center (MCCCC). The objective is to train cancer advocates to engage their communities and develop and implement cancer prevention and screening navigation programs. The central hypothesis for this program is that community-driven cancer advocacy will significantly improve cancer awareness, knowledge, prevention, risk reduction, screening uptake, and early detection among Black immigrants. Methods: We collaborated with immigrant communities’ leaders to brainstorm on the current state of healthcare access and disparities experienced by Black immigrants and to set program and research priorities through listening sessions. Cancer advocates were trained to engage their communities to (1) develop and implement cancer risk reduction and education programs using train-the-trainer approach, (2) mobilize the resources within the community for cancer health promotion, prevention, and screening strategies, (3) partner with key stakeholders to accomplish targeted objectives; (4) raise funds to support advocacy activities; and (5) develop and successfully organize community-centered programs. Results: We are currently working with 10 Black immigrant organizations, including immigrant churches across different ethnicities, including Nigeria, Ghana, Cameroon, Liberia, South Africa, Haiti, Jamaica, and across different cities in the United States. Eighteen community cancer advocates, including breast and prostate cancer survivors, caregivers, and community influencers, were trained to engage the immigrant communities in cancer risk reduction and research in Florida using multiple channels, including in-person community programs and online engagement approaches. We have engaged 720 immigrants in cancer risk reduction education and the need to participate in research during advocate-led in-person community outreaches. We currently have 26 immigrants who have volunteered in the Mayo Clinic Community Research Registry. The program is ongoing, and we anticipate that more than 750 will be engaged, and 100 will volunteer to be registered in the Mayo Clinic Community Research Registry. Conclusion: Advocate-led advocacy in immigrant communities will provide evidence for compelling arguments about the feasibility and availability of the Black immigrant population for robust and sustainable research and program engagements to eliminate disparity and advance cancer health equity. Citation Format: Opeyemi O. Bolajoko, Caleb Ramirez, Shannon Pressey, Noreen A. Stephenson, Vinessa A. Gordon, Binta Onyibe, Kingsley Efe, Austin Okaiwele, Mubo Oloruntobo, Brittany M. Norris, Folakemi T. Odedina. Cancer health equity and research advocacy program among immigrant communities [abstract]. In: Proceedings of the 17th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2024 Sep 21-24; Los Angeles, CA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2024;33(9 Suppl):Abstract nr B002.

Abstract Introduction: The relentless surge of prostate cancer rates is rapidly alarming public health officials, leaving a trail of shattered hopes among Black men in the United States. This toll reduces mortality for this population, the urgent need for effective solutions becomes more apparent. Survivorship care plans (SCPs) emerge as a beacon of hope, holding the potential to transform the provision of care. Within this tool lies the encapsulation of vital cancer-related information, passed from the oncology team to the resilient survivor and their primary care physician. However, despite the unwavering support of national governing bodies, a disheartening reality persists for Black male survivors, who never access these life-saving plans. The study purpose was to identify receipt of SCPs and the preferred communication delivery of health information among Black prostate cancer survivors. Methods: Utilizing a grounded theory approach, our study delved into the experiences of a convenience sample of seven Black male prostate cancer survivors. In-person and telephone-based semi-structured interviews we sought to unravel unique narratives. The research inquiries used open-ended questions (1) knowledge, awareness, and understanding of SCPs; (2) interactions with medical professionals; and (3) preferred methods of communication of healthcare information. Employing a line-by-line descriptive force coding method, we extracted pertinent statements by open and axial coding to generate specific codes to encapsulate information collected from an underserved population. Results: Thorough analysis revealed several distinct themes pertaining to survivorship care plans and preferred communication styles. The relevant findings were a lack of SCPs knowledge, an absence of post-treatment care, the profound influence of faith and family support, and the value of group settings. Despite receiving education on treatment, survivors expressed a sense of being left adrift, as if their medical professional team had failed to provide them with a clear roadmap for their survivorship journey. In the absence of proper guidance, survivors resorted to considering pre-treatment risk assessments as a makeshift substitute for a comprehensive survivorship care plan. Conclusion: The impact of our study’s findings resonates deeply, revealing a startling reality: Black male survivors in our sample possessed a distressing lack of knowledge about the post-treatment phase of survivorship. Instead, they relied on the support of their spouses or fellow survivors with whom they connected during treatment sessions. The removal of government mandates aimed at promoting SCPs likely contributes toward a disheartening knowledge disparities among many Black men, leaving them without clear guidance regarding the crucial phase of aftercare. Armed with this data, we have the opportunity to drive change and enhance the development of culturally tailored, interactive care plans specifically designed to support Black male survivors after they conquer prostate cancer treatment. Citation Format: Dottington Fullwood, Charles Waldon, Carol Thomas, Mary Ellen Young, Shannon Pressey, Folakemi T. Odedina, Brandon Snipe, Isela Villasenor. Unsilenced strength: Survivorship perspectives from Black prostate cancer survivors [abstract]. In: Proceedings of the 16th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2023 Sep 29-Oct 2;Orlando, FL. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2023;32(12 Suppl):Abstract nr B013.

Abstract The day I received news of my prostate cancer diagnosis time paused for a minute. My heart was heavy, and my mind racing and my soul appeared to leave my body as the physician kept talking. I’m looking at this doctor and having internal conversations with myself about dying. My attention switched from listening to reflecting to Fred Sanford holding his heart and saying “Elizabeth, I am coming to join you”, but my wife was right next to me holding my hand. The embrace of our interlocked fingers without saying a word to one another assured both of us this too shall pass. My knowing I had support encouraged me to begin educating myself about the science of survivorship. The presence of prostate cancer resources was absent in my community. I began reading information online to grasp a better understanding of this disease. The information gained encouraged me to request a second opinion from another oncologist. I was amaze by the difference in opinion about treatment options. I felt the urge to identify and specifically speak with other Black men going through this process. Everywhere I looked for support groups felt like removing my hands from pocket and watching lent flee from my fingers. What did I do? I registered my own prostate cancer support group with the state of Florida. The group grew from a few to 20 Black men across major metropolitan cities in Florida. These group meetings extended to men leading groups in their communities. I joined the Prostate Health Education Network as the Regional Ambassador to promote prostate awareness and clinical trials. My advocacy presence in the state of Florida led to Dr. Odedina and I crossing paths to champion elimination of prostate cancer health disparities for Black men. I am a Citizen Scientist in the lab of Dr. Odedina working on the inclusive cancer care and research equity for Black men consortium. I have co-authored publications, co-presented at conferences, served on research projects, and contributed to grant funding totaling over $25 million as a citizen scientist. Currently working on a Department of Defense funded grant focusing on the point of prostate cancer diagnosis. The project has completed several events to dispel myths about participation in clinical research while discussions about early detection is vital to improve survivorship. The reward from this work is knowing I am helping create spaces for Black men never to travel this journey alone. I believe men appreciate having a patient supporter but require fellowship with men who have traveled the road to gain navigational insights on how to maneuver across this terrain. Citation Format: AJ Merriweather, Dottington Fullwood, Che Ngufor, Jennifer Crook, Emelina Asto-Flores, Parisa Fathi, Roxana Dronca, Shannon Pressey, Folakemi Odedina. Early detection saves lives: I survived, and you can too— Any day above ground is a good day [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2023; Part 1 (Regular and Invited Abstracts); 2023 Apr 14-19; Orlando, FL. Philadelphia (PA): AACR; Cancer Res 2023;83(7_Suppl):Abstract nr 727.

Abstract Background: Black men continue to be disproportionately affected by prostate cancer incidence and mortality as compared to their White counterparts, despite worldwide declining prostate cancer diagnosis rates. This complex phenomenon remains poorly understood, especially at the point of a prostate cancer diagnosis. Newly diagnosed Black men report initial feelings ranging from being “shocked,” to “receiving a death sentence,” and both an ineptness of asking questions and a reliance on physicians for treatment options due to lack of knowledge. The psychological distress from prostate cancer uncertainties affects health management and treatment decisions, though it is unclear to what extent the role of social determinants of health factor in making informed healthcare decisions. Aim: In this scoping review, we examined the influence of the social determinants of health at point of prostate cancer diagnosis among Black men seeking to make an informed decision about their treatment plans. Methods: We followed the methodological framework: the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR). Five electronic databases, Emabase, Pubmed, PsycInfo, Scopus, and Web of Science were searched for quantitative and qualitative primary studies from the period 2005 until March 2022. Two authors independently screened titles and abstracts, and full texts, against predefined criteria: empirical research, post 2000, in English-language peer-reviewed journals; participants included Black prostate cancer survivors and research explored social determinants of health at point of prostate cancer diagnosis. Studies were quality assessed for data charting. Results: The search yielded 283 studies, with 45 included studies for synthesis. Traditional social determinants of health were frequent. However, identification of themes such as social support, masculinity and stigma, fear of abandonment by medical staff, and cost of diagnostic procedures were prominent determinants. Notably, sub-themes emerged that included coping factors such as emotional distress, perceptions of normalcy, and poor prostate cancer knowledge. Conclusion: Understanding the social determinants of health impact on Black men, especially at point of prostate cancer diagnosis will allow survivors, physicians, and researchers to work at solving these health disparities. Citation Format: Dottington Fullwood, AJ Merriweather, Che Ngufor, Deidre Pereira, KC Balaji, Roxana Dronca, Gerardo Colon-Otero, Jennifer Crook, Parisa Fathi, Emelina Asto-Flores, Shannon Pressey, Folakemi Odedina. iCCaRe: Social determinants of health navigation, psycho-oncology, and emotional support for Black prostate cancer survivors: Review of current practices. [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2023; Part 1 (Regular and Invited Abstracts); 2023 Apr 14-19; Orlando, FL. Philadelphia (PA): AACR; Cancer Res 2023;83(7_Suppl):Abstract nr 4371.