PO.CL04.02 · 临床研究

幸存者照护与性健康:我们从社区市政厅会议中的黑人男性身上学到了什么

Survivorship and sexual health: What we learned from Black men in community town halls

海报缩略图:幸存者照护与性健康:我们从社区市政厅会议中的黑人男性身上学到了什么
编号 2483 展板 13 时间 4/20 09:00–12:00 区域 Section 42 主讲 Parisa Ghasemi, MD
分会场 Community-Engaged Approaches to Equity Across the Cancer Journey: From Prevention to Trial Design
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作者与单位 Authors & Affiliations

Parisa Ghasemi1, Gaurav Kumar1, Ernest T. Kaninjing2, Adanma Ayanambakkam1, Yaw A. Nyame3, Amy Siston4, Jordan M. Neil1, Adam C. Alexander1, Andrew G. McIntosh1, Yan Zhao1, Zsolt Nagykaldi1, Kathleen A. Dwyer1, Mary Ellen Young5, Sabrina Dickey6, Daniel Morton1, Opeyemi Bolajoko7, Darla E. Kendzor1, Motolani E. Ogunsanya1

1University of Oklahoma Health Campus, Oklahoma City, OK,2Georgia College & State University, Milledgeville, GA,3University of Washington, Seattle, WA,4University of Chicago Medicine, Chicago, IL,5Mayo Foundation for Medical Education and Research, Jacksonville, FL,6Florida State University, Tallahassee, FL,7Mayo Clinic Comprehensive Cancer Center, Jacksonville, FL

摘要 Abstract

中文摘要
背景:前列腺癌(CaP)是美国男性中最常见的癌症之一,与非西班牙裔白人男性相比,黑人男性的发病率高出1.7倍,死亡率则接近两倍。虽然早期发现已改善了生存状况,但在康复和生活质量(QoL)方面仍存在差异。治疗后的性功能障碍会影响身份认同、人际关系和幸福感,然而污名、文化规范以及以患者为中心的照护渠道有限阻碍了公开讨论。很少有举措针对该人群中身份认同、污名与幸存者照护的交叉问题。社区市政厅会议为围绕幸存者照护和性健康开展共同学习、同伴联结和公开对话提供了一个可信赖、文化响应型的空间。 方法:俄克拉荷马大学健康校区(OUHC)的多学科健康结局研究与经济学(MORE)实验室召集了两次社区参与式CaP市政厅会议,以探讨黑人CaP幸存者中的幸存者照护问题。第一次会议于2024年6月以线上形式举行,并在佐治亚州和得克萨斯州设有观看聚会。第二次会议于2024年11月举行,采用混合形式,在OUHC现场举办并通过Teams进行,同时在俄克拉荷马城的社区中心Willa D. Johnson娱乐中心设有观看聚会。小组成员包括肿瘤科医生、心理学家、幸存者、伴侣以及社区咨询委员会成员。两次市政厅会议均设有幸存者故事分享、医疗提供者问答和互动讨论环节。会后调查收集了人口统计学信息、满意度和影响。开放讨论的文字记录采用Braun和Clarke的反思性主题分析法进行分析,并以建构主义框架为指导。 结果:两次市政厅会议共有124名参与者出席。调查应答者(n=17;13.7%)提供了人口统计学和满意度数据;其余洞见来自所有参与开放对话的参与者。应答者年龄范围为19-76岁(均值=48.7 ± 21.8)。在17名应答者中,93%将活动评价为非常好或优秀;23.5%为CaP幸存者,全部认同自己为黑人。出现了五个主题:(1)男子气概、污名和沉默限制了求助行为;(2)性功能障碍和身份丧失造成重大情感负担;(3)导航挑战凸显了系统性障碍;(4)配偶支持和心理支持有助于应对;以及(5)幸存者赋能。参与者珍视听到“真实男性讲述真实故事”,认为这印证了他们的经历。 结论:社区市政厅会议是一种可行且具有文化相关性的策略,可让黑人CaP幸存者参与到幸存者照护和性健康的讨论中。通过以亲身经历为中心,并促进幸存者、临床医生和研究者之间的双向沟通,这些活动建立了信任并减少了污名。未来的工作将评估在知识、参与度和照护导航信心方面的变化,并探索如何扩展这一社区-学术合作模型,以改善幸存者的生活质量。
查看英文原文 English abstract
Background: Prostate cancer (CaP) is among the most common cancers in U.S. men, with Black men experiencing a 1.7-fold higher incidence and nearly twice the mortality rate compared with non-Hispanic White men. While early detection has improved survival, differences remain in recovery and quality of life (QoL). Sexual dysfunction after treatment affects identity, relationships, and well-being, yet stigma, cultural norms, and limited access to patient-centered care prevent open discussion. Few initiatives address the intersection of identity, stigma, and survivorship in this population. Community town halls provide a trusted, culturally responsive space for shared learning, peer connection, and open dialogue on survivorship and sexual health. Methods: Two community-engaged CaP town halls were convened by the Multidisciplinary Health Outcomes Research and Economics (MORE) Lab at the University of Oklahoma Health Campus (OUHC) to explore survivorship issues among Black CaP survivors. The first, held virtually in June 2024, included watch parties in Georgia and Texas. The second, in November 2024, was hybrid, hosted at OUHC and via Teams with a watch party at the Willa D. Johnson Recreation Center, a community center in Oklahoma City. Panelists included oncologists, psychologists, survivors, partners, and Community Advisory Board members. Both town halls featured survivor storytelling, provider Q&A, and interactive discussion. Post-event surveys captured demographics, satisfaction, and impact. Open-discussion transcripts were analyzed using Braun and Clarke's reflexive thematic analysis, guided by a constructivist framework. Results: A total of 124 participants attended both town halls. Survey respondents (n=17; 13.7%) provided demographic and satisfaction data; remaining insights came from all participants who engaged in open dialogue. Respondents ranged in age from 19-76 years (mean=48.7 ± 21.8). Of the 17 respondents, 93% rated the events as very good or excellent; 23.5% were CaP survivors, all identifying as Black. Five themes emerged: (1) Masculinity, stigma, and silence limit help-seeking; (2) Sexual dysfunction and identity loss cause major emotional burdens; (3) Navigation challenges highlight systemic barriers; (4) Spousal and psychological support aid coping; and (5) Survivorship empowerment. Participants valued hearing “real stories from real men,” validating their experiences. Conclusions: Community town halls are a feasible and culturally relevant strategy to engage Black CaP survivors in survivorship and sexual health discussions. By centering lived experiences and facilitating two-way communication between survivors, clinicians, and researchers, these events build trust and reduce stigma. Future work will assess changes in knowledge, engagement, and confidence in care navigation and explore scaling this community-academic model to improve survivorship QoL.
利益披露 Disclosure
P. Ghasemi, None.. G. Kumar, None.. A. Ayanambakkam, None.. A. Siston, None.. J. M. Neil, None.. A. C. Alexander, None.. A. G. McIntosh, None.. Y. Zhao, None.. Z. Nagykaldi, None.. K. A. Dwyer, None.. M. Young, None.. S. Dickey, None.. D. Morton, None.. O. Bolajoko, None. D. E. Kendzor, Qnovia Other, Serving on the Scientific Advisory Board. M. E. Ogunsanya, None.

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