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Published on: February 16, 2011
One Herd: A Community Storytelling Campaign for Equity in Adolescent and Young Adult Cancer Survivorship
Lauren V Ghazal1,2, Nick Giallourakis3, Yolanda Murphy3,4
1School of Nursing, University of Rochester, Rochester, New York, USA.
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.
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