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PARTY 项目:通过患者参与、参与和表现揭示青少年和年轻人独特的癌症体验和见解。

The PARTY Project: Revealing Unique Cancer Experiences and Insights of Teenagers and Young Adults through Patient Engagement, Participation, and Performance.

机构信息

School of Performance and Cultural Industries, University of Leeds, Leeds LS2 9JT, UK.

School of Leadership Studies, Royal Roads University, Victoria, BC V9B 5Y2, Canada.

出版信息

Curr Oncol. 2024 Oct 1;31(10):5896-5907. doi: 10.3390/curroncol31100439.

Abstract

Cancer in teenagers and young adults (TYAs) coincides with major life transitions and presents unique psychosocial challenges. Understanding the experiences and needs of TYAs is critical. TYAs want to play an active role in improving cancer for TYAs; however, few opportunities exist for TYAs to do so. Using a tri-partite methodology, an international team collaborated with four TYA co-researchers in this pilot study to explore how performative staging strategies help convey TYA experiences with cancer. Using creative video, TYA co-researchers shared cancer experiences and insights in novel, impactful ways. The process provided intrinsic benefits for co-researchers to connect with other TYAs and creatively share their experiences and perspectives. Furthermore, it provided space for dialogue between TYAs and cancer care allies where TYAs could convey the nuances of their cancer experiences and how cancer care could be improved. This tri-partite methodology can support TYAs to actively engage in a process of connection, reflection, creation, and dissemination to improve cancer experiences for TYAs.

摘要

青少年和年轻成年人(TYAs)中的癌症与重大生活转变同时发生,并呈现出独特的社会心理挑战。了解 TYAs 的经历和需求至关重要。TYAs 希望在改善 TYAs 癌症方面发挥积极作用;然而,TYAs 很少有机会这样做。利用三方方法,一个国际团队与四位 TYA 共同研究人员合作进行了这项试点研究,以探讨表现性分期策略如何帮助传达 TYA 与癌症的相关经历。通过创造性的视频,共同研究人员以新颖、有影响力的方式分享了癌症相关经历和见解。这一过程为共同研究人员提供了内在的益处,使他们能够与其他 TYAs 建立联系,并以创造性的方式分享他们的经历和观点。此外,它还为 TYAs 和癌症护理盟友之间提供了对话的空间,使 TYAs 能够传达他们癌症经历的细微差别,以及如何改进癌症护理。这种三方方法可以支持 TYAs 积极参与连接、反思、创造和传播的过程,以改善 TYAs 的癌症体验。

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