Young, Mary Ellen

Abstract Introduction Prostate cancer (CaP) significantly impacts Black men, who face higher morbidity despite lower overall mortality. The disease and its treatments profoundly affect sexuality, relationships, and quality of life (QoL), necessitating robust support systems. Healthcare, spousal support, community involvement, and interactions with other survivors are crucial for enhancing survivors' self-esteem and daily functioning. Virtual town halls offer a platform to share trusted information and foster community support, overcoming geographic and structural barriers. This town hall event will explore Black CaP survivors' experiences, focusing on sexuality post-diagnosis and related medical and psychological needs. MethodsOn June 13, 2024, The University of Oklahoma and Stephenson Cancer Center will host the 5th town hall event (via Microsoft Teams) to address Black CaP survivors' sexual health concerns. Previous town halls averaged 70 attendees and covered various aspects of the CaP journey. This event will include storytelling and panel discussions, with presentations from two CaP survivors and their spouses on personal experiences and coping strategies. A urologic oncologist will discuss treatment advancements and early detection, while a clinical health psychologist will address psychological and emotional aspects of survivorship. Simultaneous watch parties will be held in Milledgeville, Georgia, and Dallas, Texas. Interactive Q&A sessions will allow participant engagement. Attendees will complete a post-event survey to assess the session's impact and collect clinical and sociodemographic data. Quantitative data will be analyzed using SPSS v28, and audio-recorded sessions will be transcribed and thematically analyzed using Nvivo. Results will be available by the end of June and presented at the conference. Expected Results Participants will gain a deeper understanding of the intersection between CaP and sexuality in Black men's health. Discussions will highlight the psychological impact of a cancer diagnosis, challenges in maintaining sexual health during and after treatment, and the role of mental health support. The town hall aims to emphasize the importance of a strong support system, providing valuable coping skills through shared experiences and expert insights. Topics will include the emotional and psychological impact of sexual health challenges, partner support, and the necessity of open communication with healthcare providers. The event seeks to improve CaP survivors' QoL by emphasizing continuous education and integrating sexual health into overall survivorship care. Conclusion This town hall event aims to bridge gaps in understanding and addressing Black CaP survivors' sexual health concerns. By fostering open dialogue and providing expert insights, we hope to improve these men's QoL and survivorship care, emphasizing mental health support, spousal support, and continuous education. Citation Format: Motolani Ogunsanya, Ernie Kaninjing, Parisa Ghasemi, Skyler Danker, Daniel Morton, Kathleen Dwyer, Mary Ellen Young, Folakemi T. Odedina, Yaw Nyame, Amy Siston, Jordan Neil, Adam C Alexander, Perry Cole, Patrick Beckford, Donald Reese, Thomas Mitchell, Everett Montgomery, Roland Odeleye, Darla E. Kendzor. Beyond the diagnosis: A town hall event to explore black men’s journey with prostate cancer and sexuality [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 B028.

Abstract Background: Prostate cancer remains a significant health concern, particularly among Black men who experience higher incidence rates and poorer outcomes compared to other racial and ethnic groups. Despite advances in survivorship care, disparities persist in the survivorship experiences, underlying the urgent need for research focusing on the unique needs of Black men in prostate cancer survivorship. By understanding the advocacy efforts and experiences of Black men who have completed prostate cancer treatment, we can identify strategies to better support this vulnerable population and inform interventions aimed at improving survivorship outcomes. Our study explored the advocacy efforts, experiences, and skills of Black men post-prostate cancer treatment to inform targeted interventions aimed at improving survivorship outcomes. Methods: Qualitative interviews were used to obtain information from 31 Black prostate cancer survivors who have completed treatment to explore their insights on survivorship and advocacy. Grounded Theory approach was utilized to analyze participants’ narratives. We employed open and axial coding techniques to extract themes from audio-recorded interviews that were then transcribed, verified and deidentified. Results: We identified several significant themes among Black men who completed prostate cancer treatment. First, participants actively engaged in "spreading the word," advocating for awareness and early detection within their communities through various channels. Second, they emphasized "the importance of advocacy," advocating for themselves and policy changes to address healthcare disparities. Third, participants were committed to "sharing information," openly discussing experiences and providing support to others navigating prostate cancer. Additionally, they highlighted the significance of "reflecting back," drawing from their life stories to offer valuable insights and guidance. Conclusion: This study sheds light on the advocacy efforts and experiences of Black men who have completed prostate cancer treatment, offering valuable insights into their perspectives and actions within their communities. Through the identification of five significant themes, including spreading awareness, advocacy importance, information sharing, and reflective support, this research underscores the proactive engagement of participants in addressing the challenges of prostate cancer. By amplifying the voices and experiences of these individuals, this study contributes to a deeper understanding of the multifaceted nature of prostate cancer survivorship within marginalized communities, ultimately informing future interventions and policies aimed at improving outcomes and reducing disparities in prostate cancer survivorship care. Citation Format: Fullwood, Mary Ellen Young, Folakemi T. Odedina. Science of Cancer Survivorship Advocacy: Perspectives from Black Prostate Cancer Survivors [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 C038.

Abstract Background: Sub-Saharan African Immigrants (SSAI) represent one of the fastest-growing segments of the immigrant population in the United States (US). Between 2010 and 2018, the SSAI population in the US increased by 53%, significantly outpacing the 12% growth rate for the overall foreign-born population in the US during that time frame. Despite these growing numbers, little is published about the extent to which SSAIs adapt to health behaviors more common in the US or remain immersed in the values, beliefs and practices reflective of their country of origin. Importantly, no study has comprehensively examined the Social Determinants of Health (SDOH) among this population relative to their migration experiences and their influence on health-seeking behaviors and decision-making regarding prostate cancer care and treatment options. Methods: This qualitative study employed grounded theory and the social determinants of migrant heath framework to better understand the needs of SSAI prostate cancer survivors in the United States and how to effectively support these survivors. In-depth interviews were conducted with 8 survivors who live in the states of Florida and Minnesota. Findings: Some participants reported limited access to care and financial challenges paying for drugs. In terms of coping with diagnosis and treatment, most of the participants relied on their faith, a positive outlook about survivorship and support of family members. Some participants relied on the coaching and support of a loved one who experienced prostate cancer in the past. Erectile dysfunction severely impacted the sexual life of most participants as they experienced difficulty getting an erection. Conclusion: Participants expressed the benefit of belonging to support groups with other survivors for social and emotional support. As the number of immigrants from sub-Saharan continue to rise, so too will the demand for culturally tailored care to address and reduce disparities in survivorship among this sub-population. Citation Format: Ernest Kaninjing, Gladys Asiedu, Kaitlin Van Voorhis, Mary Ellen Young, Ebenezer Erefah, Emmanuel Agboola, Folakemi Odedina, Roxana Dronca, Kimlin Ashing, Solomon Rotimi, Che Ngufor, Arnola Merriweather, John McCall, Anthony Hill. Social determinants of migrant health factors impacting prostate cancer care and survivorship among sub-Saharan African immigrant men diagnosed with prostate cancer [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2024; Part 1 (Regular Abstracts); 2024 Apr 5-10; San Diego, CA. Philadelphia (PA): AACR; Cancer Res 2024;84(6_Suppl):Abstract nr 1310.

Abstract Purpose: Prostate cancer (CaP) is the most common cancer in Black men (BM), and the number of Black CaP survivors is rapidly increasing. Although Black immigrants are among the fastest-growing and most heterogeneous ethnic groups in the US, limited data exist regarding their CaP experiences. Therefore, this study aimed to explore and model the experiences of ethnically diverse Black men with CaP. Methods: In-depth interviews were conducted with 34 participants: Native-born BM (NBBM) (n=17), African-born BM (ABBM) (n=11), and Caribbean-born BM (CBBM) (n=6) CaP survivors recruited through QR-code embedded flyers posted in Black businesses, clinics, social media platforms, and existing research networks within the US. Guided by Charmaz’s constructivist grounded theory methodology, the interviews were analyzed using constant comparison following key stages of initial, focused, and theoretical coding using Atlas.ti v23. Results: Participants were thirty-four men aged 49-84 years (mean±SD, 66±8). Most were married (77%), likely to be diagnosed at Stage I (35%), and treated with radiotherapy (56%). Our study findings explored the complex trajectory of Black prostate cancer (CaP) survivors, unveiling a comprehensive model termed "Journeying through Unfamiliar Terrain." Comprising three phases and 11 sub-phases, this model uniquely captures the pre-diagnosis awareness and post-treatment adaptation among survivors. Conclusion: The resulting theoretical model delineates the entire CaP survivorship process among BM, providing contextual and conceptual understanding for developing interventions and enhancing patient-centered care for ethnically diverse CaP survivors, pivotal in bridging the gaps in survivorship research and healthcare practices.

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 Background: The increasing number of African immigrants in the United States has contributed to the diversity of the country's Black population. However, there is limited research on the impact of immigration, particularly regarding chronic diseases like cancer, within the sub-Saharan African immigrant (SSAI) community. To address this gap, this study aimed to explore cultural factors among SSAIs to better understand the drivers of health disparities in prostate cancer outcomes. Methods: A qualitative approach using grounded theory was employed for this study. Participants were purposefully recruited to reflect the cultural diversity among SSAIs. Recruitment occurred at health fairs, community events and by snowball approach. In-depth interviews were conducted with 16 participants, including prostate cancer survivors. Nine participants have lived in the US for at least 10 years. The average age of participants was 51 years. Country of birth for study participants include, Nigeria, Ghana, Cameroon, Kenya, and Ethiopia. Interviews were transcribed, verified, and de-identified then imported into NVivo 12 software. Four research team members, three of them African immigrants, performed open and axial coding, with consensus on the emerging findings. Results: This study identified several key cultural factors influencing SSAI men’s health behaviors. These factors include the perception of cancer in their country of birth, the low priority given to preventative care in their country of origin, and reluctance to embrace a Westernized diet, the perception of cancer in their country of origin as a death sentence, viewing cancer as a spiritual/religious attack, and associating cancer with affluence. In addition, these cultural factors made participants hesitant to discuss cancer, relying on religion for healing instead of medical care, and seeking healthcare only for cure. Conclusion: This study illuminates key cultural factors among SSAI men that influence their health-seeking behaviors. These findings highlight the need for culturally tailored behavioral interventions to address these factors and improve health outcomes within this understudied population. Citation Format: Ernest Kaninjing, Motolani Ogunsanya, Kaitlin Van Voorhis, Gladys Asiedu, Assata Kokayi, Rae Walker Brennan, Mary Ellen Young, Folake Odedina. The influence of cultural factors on health-seeking behaviors regarding prostate cancer among African immigrant men in the United States [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 A070.

Abstract Background: Sub-Saharan African immigrant (SSAI) men constitute one of the fastest-growing immigrant populations in the United States and a large heterogeneous group in cancer survivorship. Yet research has ignored decision making about health and behavioral risk factors among SSAI communities. Intersecting acculturation and culture-specific perceptions about cancer screening within decision-making frameworks may be an essential step towards developing meaningful interventions for immigrant men’s healthcare. Objectives: This study aimed to gain insight into cancer-related beliefs and health decision-making practices among sub-Saharan African immigrant men. Methods: A qualitative design intersecting grounded theory analysis was employed using 16 semi-structured, in-depth individual interviews with SSAI men residing in Georgia and Florida. Participants were recruited from health fairs, community events, and by snowball effect. The average age of participants was 51 years with country of birth including Cameroon, Ethiopia, Ghana, Kenya, and Nigeria. An interview guide was prepared with emphasis on SSAI’s perspectives on lifestyle factors for cancer and decision making about cancer screening. Data were audio-recorded, transcribed, and analyzed using open, inductive, and axial coding via NVivo 12 qualitative data analysis software. Results: Findings identified key cultural factors impacting barriers to and facilitators of SSAI men’s decision-making processes and health-seeking behaviors. Most participants making positive decisions reflected on intercultural health practices made in collaboration with clinicians, significant others and community partnerships. Most participants with negative decisions tended to consider socio-cultural barriers and shortcomings in US health-care system. Participants’ preventative care decisions about cancer screening differed. Conclusions: This qualitative study illuminated key cultural factors among SSAI men that influenced their decision making about cancer screening and health-seeking behaviors. Future research should investigate longitudinal and quantitative studies to test decision-making outcomes. Funding Source: This study is funded by the National Institute on Minority Health and Health Disparities (1R15MD017012-01A1). Keywords: Cancer health disparities, Decision-making, Immigrant men, Intersectionality, Qualitative study Citation Format: Assata Kokayi, Gladys Asiedu, Kaitlin Van Voorhis, Rae Walker, M.E. Young, Folakemi Odedina, Motolani Ogunsanya, Ernie Kaninjing. Intersecting acculturation and decision making about cancer screening among sub-Saharan African immigrant men: A qualitative study [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 A062.

Abstract Background: Sub-Saharan African immigrants (SSAI) in the United States (US) constitute one of the fastest-growing segments of the immigrant population. Between 2010 and 2018, the SSAI population in the US increased by 53%, significantly outpacing the 12% growth rate for the overall foreign-born population in the US during that time frame. For the purposes of this study, we define SSAI as the 2 million individuals living in the US originally from the region of the African continent located south of the Saharan desert. Despite their growing numbers, little is published about the extent to which SSAI adapt to health behaviors more common in the US or remain immersed in the values, beliefs and practices reflective of their country of origin. Importantly, no study has comprehensively examined the social determinants of health factors among this population and its influence on health-seeking behaviors and decision-making regarding prostate cancer care and treatment options. This study employs the social determinant of migrant health framework to examine the impact of immigration on the health-seeking behaviors of SSAI including informed-decision making, psychosocial effects and coping mechanisms. This study will fill the void of research studies that link social determinant of health and immigration among SSAI. Methods: Grounded theory will guide the study design that include in-depth interviews to document the experiences of SSAI relative to health seeking behaviors, care, and treatment. We explore differences and similarities among participants based on country or region of origin in Africa. We employ the social determinants of migrant health framework to better understand the needs of SSAI prostate cancer survivors in the United States and how to effectively support these survivors. Results: We will present findings based on preliminary interviews conducted with SSAI prostate cancer survivors recruited from Florida or Minnesota. Additionally, we will report on the development of a SSAI social determinant of migration model that explains individual and structural factors that impact the health-seeking behaviors and coping mechanisms among this population. We will provide new understanding about specific social determinant of health factors that can be addressed in intervention studies among SSAI in the United States. Conclusion: This study examines the full range of racial, social, environmental, behavioral and structural factors that SSAI prostate cancer survivors experience. It will illuminate the decision-making process and overall quality of care among this understudied population. Citation Format: Ernie Kaninjing, Gladys Asiedu, Mary Ellen Young, Ebenezer Erefah, Folakemi Odedina, Roxana Dronca, Kimlin Ashing, Solomon Rotimi, Che Ngufor, Arnold Merriweather, Jennifer Crook, Manisha Salinas, Parisa Fathi, Sha’Reff Rashad, John McCall, Ayinde Yahaya. The iCCARE consortium for prostate cancer in Black men: Grounded theory study of the social determinant of health factors among African immigrant men diagnosed with prostate cancer [abstract]. In: Proceedings of the 15th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2022 Sep 16-19; Philadelphia, PA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2022;31(1 Suppl):Abstract nr B050.

Abstract Introduction: Although prostate cancer (CaP) mortality rates are low, higher morbidity rates have been reported in Black men. In addition, the transition from treatment to survivorship can be burdensome and negatively impact quality of life (QoL). However, informal and formal support networks and resources, particularly spousal support, help enhance the sense of self and patient’s activities of daily living. Community, family involvement, and interaction with other survivors have also been found to be beneficial to survivors during diagnosis and treatment. Thus, we convened a town hall event for CaP survivors and those who care for and love them to explore the multidimensional impact of CaP and better understand the clinical and psychosocial needs of ethnically diverse Black CaP survivors. Methods: The virtual inaugural town hall meeting, organized by the University of Oklahoma (OU) Health and Stephenson Cancer Center, was held on April 28, 2022. The panelists included ethnically diverse CaP survivors, a radiation oncologist and urologist, and the spouse of a survivor. The town hall also served as a means to provide informational resources to attendees. A post-town hall survey was made available to all attendees to evaluate the town hall session and collect clinical and sociodemographic variables. Quantitative data were analyzed using SPSS v27. The event was audio recorded, and the transcript was content-analyzed to identify emergent themes. Results: Twenty-one out of the 43 attendees completed the survey (response rate of 49%). The respondents were aged 31-74 years old (mean±SD, 58±13), mostly males (67%), married (68%), CaP survivors (52%), and college graduates (43%). More than 80% rated the town hall to be very good/excellent and educational in light of varied approaches, perspectives, stories, and experiences shared by all the panelists. Participants appreciated updated information conveyed on anatomy, screening, signs and symptoms, diagnosis, stages of CaP, treatment, and short-term and long-term side effects shared by the oncologist. Results highlighted the physical and psychosocial impacts and stresses of CaP diagnosis on a family as a unit, especially intergenerational communication of perceived susceptibility and risk. Panelists also highlighted the burden of CaP survivorship on relationships, especially with their partners/spouses with impending functional distress. Results also underscored the positive influence CaP survivors can have on other survivors via peer advocacy and support. Finally, giving more time to panelists, extending the Q&A session, including other caregivers as panelists, and having more town hall events were top recommendations offered by participants. Conclusion: The town hall format allowed panelists, especially CaP survivors, to freely express their experiences with CaP. Overall, more awareness was raised about the importance of CaP prevention, treatment decision-making, survivorship, and advocacy: invaluable discussions needed to engage this hard-to-reach population regarding CaP prevention and care. Citation Format: Motolani E. Ogunsanya, Ernie Kaninjing, Maleeha Shahid, Darla Kendzor, Kathleen Dwyer, Mary Ellen Young, Folakemi T. Odedina. Prostate cancer survivorship and advocacy in ethnically diverse Black men: Findings from a town hall event [abstract]. In: Proceedings of the 15th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2022 Sep 16-19; Philadelphia, PA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2022;31(1 Suppl):Abstract nr A041.