PO.ADV01 · 患者倡导
生存者关怀与同伴支持：青年主导倡议的成果
Survivorship and peer support: Outcomes from youth leadership initiatives
作者与单位 Authors & Affiliations
摘要 Abstract
中文摘要
MIB Agents是一家非营利组织，致力于为受骨肉瘤（OS）影响的患者及家庭提供支持。骨肉瘤是一种主要影响儿童和青少年及青年（AYA）的恶性肿瘤。过去十年间，MIB实施了多项青年主导的倡议，以推动OS研究、游说相关立法，并与当前受OS影响的患者建立联系。其中一个名为Ambassador Agents的项目，将OS生存者与当前受OS影响的患者及家庭联系起来。另一个名为Junior Advisory Board（青年顾问委员会）的项目，是一个由AYA组成的小组，负责为OS研究提供信息、游说儿童癌症立法，并制作播客以在OS社区中传播他们的声音。此外，由OS生存者运营的osTEAo播客旨在讨论OS生存者在治疗后面临的障碍。这些项目最大的间接效益之一，是在不同OS生存者之间创建了一个同伴支持社区。参与这些青年主导的倡议通过营造结构化的同伴间联系和相互支持机会，促进了AYA的应对能力。参与Ambassador Agents和Junior Advisory Board等项目与孤立感减少、韧性增强以及在骨肉瘤生存者社区中身份认同感的强化相关联。
查看英文原文 English abstract
MIB Agents is a nonprofit organization dedicated toproviding support for patients and families affected by Osteosarcoma (OS), amalignancy that primarily affects children and AYAs. Over the past decade, MIBhas implemented youth-led initiatives to inform OS research, lobby forpertinent legislation, and connect with current patients affected by OS. Oneprogram, called Ambassador Agents, connects OS survivors with current patientsand families affected by OS. Another program, called the Junior Advisory Board,is a panel of AYAs who are responsible for informing OS research, lobbying forpediatric cancer legislation, and producing podcasts to spread their voiceacross the OS community. Additionally, the osTEAo podcast, run by OS survivors,aims to discuss post-treatment roadblocks that OS survivors face. One of thelargest indirect benefits of these programs is the creation of a peer supportcommunity between different OS survivors. Participation in these youth-ledinitiatives has facilitated coping among AYAs by fostering structuredopportunities for peer-to-peer connection and mutual support. Engagement inprograms such as the Ambassador Agents and Junior Advisory Board has beenassociated with reduced isolation, enhanced resilience, and a strengthened senseof identity within the osteosarcoma survivorship community.