One Herd: A Community Storytelling Campaign for Equity in Adolescent and Young Adult Cancer Survivorship.

IF 1.2 4区 医学 Q4 ONCOLOGY
Lauren V Ghazal, Nick Giallourakis, Yolanda Murphy, Kayla Fulginiti, Natasha Renee Burse
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引用次数: 0

Abstract

Background: Community-based organizations play an essential yet underrecognized role in addressing health inequities faced by adolescent and young adult (AYA) cancer survivors, particularly those from underrepresented communities. Elephants and Tea, a nonprofit organization, launched One Herd, a digital storytelling and health equity campaign designed to elevate lived experiences of underserved AYA survivors. This article describes the conception and development of that campaign and presents findings from its needs assessment.

Methods: One Herd followed a five-phase process (1) assembling a multidisciplinary advisory team of underrepresented AYA survivors; (2) identifying campaign priorities and conducting a national needs assessment to inform content development; (3) analyzing survey findings and creating survivorship-centered content; (4) disseminating content through digital, print, webinar, and live storytelling platforms; and (5) evaluating campaign reach and perceived impact. A national needs assessment identified social and structural barriers to equitable survivorship care, guided by social determinants of health and community-engaged frameworks.

Results: Eighty-one AYA cancer survivors completed the survey; 76 were included in the final analysis. Participants reported multilevel inequities, including limited access to fertility preservation resources, perceived bias and discrimination in health care, and unmet needs for peer connection and identity-affirming support. Findings informed the development of survivor-centered digital storytelling and educational materials for community and provider audiences. Dissemination formats included a print and digital magazine, webinars, and live storytelling events, with workforce education integrated into Elephants and Tea's AYA Program for Oncology Workforce Education and Resources. Early feedback identified survivor stories as the most impactful campaign component.

Conclusions: One Herd demonstrates how community-led, research-informed storytelling can operationalize narrative equity and bridge survivor experience with system-level education in AYA cancer care.

一个牧群:青少年和青年癌症幸存者公平的社区讲故事运动。
背景:以社区为基础的组织在解决青少年和青年癌症幸存者,特别是来自代表性不足社区的癌症幸存者面临的卫生不平等问题方面发挥着重要但未得到充分认识的作用。非营利组织大象与茶(Elephants and Tea)发起了一群人(One Herd),这是一项数字叙事和健康公平运动,旨在提升得不到充分服务的AYA幸存者的生活体验。本文描述了该运动的概念和发展,并介绍了其需求评估的结果。方法:一个牧群遵循五个阶段的过程(1)组建一个多学科咨询团队,由代表性不足的AYA幸存者组成;(2)确定活动重点并进行国家需求评估,为内容开发提供信息;(3)分析调查结果,创造以生存为中心的内容;(4)通过数字、印刷、网络研讨会和现场讲故事平台传播内容;(5)评估活动范围和感知影响。在健康的社会决定因素和社区参与框架的指导下,国家需求评估确定了公平的遗属护理的社会和结构性障碍。结果:81例AYA癌症幸存者完成了调查;76例纳入最后分析。与会者报告了多层次的不平等现象,包括获得生育保护资源的机会有限,在保健方面感受到的偏见和歧视,以及同伴联系和确认身份支持方面的需求未得到满足。研究结果为开发以幸存者为中心的数字故事讲述和面向社区和提供者受众的教育材料提供了信息。传播形式包括印刷和数字杂志、网络研讨会和现场讲故事活动,并将劳动力教育纳入大象和茶的AYA肿瘤劳动力教育和资源计划。早期反馈认为幸存者故事是最有影响力的战役组件。结论:One Herd展示了社区主导的、以研究为依据的讲故事如何实现叙事公平,并将幸存者经验与AYA癌症护理的系统级教育联系起来。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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来源期刊
CiteScore
3.70
自引率
15.00%
发文量
114
期刊介绍: Journal of Adolescent and Young Adult Oncology (JAYAO) breaks new ground as the first cancer journal dedicated to all aspects of adolescent and young adult (AYA)-aged cancer patients and survivors. JAYAO is the only central forum for peer-reviewed articles, reviews, and research in the field, bringing together all AYA oncology stakeholders and professionals across disciplines, including clinicians, researchers, psychosocial and supportive care providers, and pediatric and adult cancer institutions.
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