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从青年乳腺癌幸存者网络中吸取的经验教训。

Lessons Learned from the Young Breast Cancer Survivorship Network.

作者信息

Gisiger-Camata Silvia, Nolan Timiya S, Vo Jacqueline B, Bail Jennifer R, Lewis Kayla A, Meneses Karen

机构信息

School of Nursing, University of Alabama at Birmingham, Medical Towers Room 415A, 1720 2nd Avenue South, Birmingham, AL, 35294-1210, USA.

College of Nursing, The Ohio State University, Columbus, OH, USA.

出版信息

J Cancer Educ. 2019 Apr;34(2):304-308. doi: 10.1007/s13187-017-1302-8.

Abstract

The Young Breast Cancer Survivors Network (Network) is an academic and community-based partnership dedicated to education, support, and networking. The Network used a multi-pronged approach via monthly support and networking, annual education seminars, website networking, and individual survivor consultation. Formative and summative evaluations were conducted using group survey and individual survivor interviews for monthly gatherings, annual education meetings, and individual consultation. Google Analytics was applied to evaluate website use. The Network began with 4 initial partnerships and grew to 38 in the period from 2011 to 2017. During this 5-year period, 5 annual meetings (598 attendees), 23 support and networking meetings (373), and 115 individual survivor consultations were conducted. The Network website had nearly 12,000 individual users and more than 25,000 page views. Lessons learned include active community engagement, survivor empowerment, capacity building, social media outreach, and network sustainability. The 5-year experiences with the Network demonstrated that a regional program dedicated to the education, support, networking, and needs of young breast cancer survivors and their families can become a vital part of cancer survivorship services in a community. Strong community support, engagement, and encouragement were vital components to sustain the program.

摘要

青年乳腺癌幸存者网络(该网络)是一个基于学术和社区的合作组织,致力于教育、支持和建立联系。该网络采用了多管齐下的方法,包括每月的支持和交流活动、年度教育研讨会、网站交流以及为个体幸存者提供咨询服务。通过对月度聚会、年度教育会议和个体咨询进行小组调查和对个体幸存者进行访谈,开展了形成性和总结性评估。运用谷歌分析工具来评估网站的使用情况。该网络最初有4个合作伙伴,到2011年至2017年期间发展到38个。在这5年期间,举办了5次年会(598名与会者)、23次支持和交流会议(373人)以及115次个体幸存者咨询。该网络的网站有近12000名独立用户,页面浏览量超过25000次。汲取的经验教训包括积极的社区参与、幸存者赋权、能力建设、社交媒体推广以及网络可持续性。该网络的5年经验表明,一个致力于青年乳腺癌幸存者及其家庭的教育、支持、建立联系和满足其需求的区域项目可以成为社区癌症生存服务的重要组成部分。强大的社区支持、参与和鼓励是维持该项目的关键要素。

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