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个人叙事:提高同龄大学生对青少年和青年癌症幸存者的认识。

Personal Narrative: Raising Awareness of Adolescent and Young Adult Cancer Survivors in Similarly Aged University Students.

机构信息

1Reid R. Sacco Adolescent and Young Adult Cancer Program at Tufts Medical Center, Boston, Massachusetts.

2Department of Natural and Applied Sciences, Bentley University, Waltham, Massachusetts.

出版信息

J Adolesc Young Adult Oncol. 2019 Aug;8(4):434-441. doi: 10.1089/jayao.2018.0131. Epub 2019 Apr 30.

Abstract

As part of a programmatic educational initiative, we developed a personal narrative presentation, embedded with evidence-based data, to raise awareness of adolescents and young adults (AYAs) who have been diagnosed with cancer between the ages of 15 and 39 years among similarly aged university students. The narrative encompassed the cancer care continuum from signs of the disease through survivorship and incorporated psychosocial aspects of the experience. The presenter, diagnosed with lymphoma at the age of 25 years in 2007, interwove AYA data with her narrative in a series of 26 invited lectures given over 2 academic years, 2016-2017 and 2017-2018. Students were asked to provide anonymous open-ended feedback. Six hundred thirteen forms were collected and retrospectively dually coded and analyzed. The majority of students (97%) referenced at least one of the presentation's three objectives: (1) build awareness of the AYA demographic; (2) encourage a personal health care focus; and (3) expand awareness of the far-reaching impact of cancer (i.e., psychological, social, and medical) both during and beyond the treatment phase. Format- and/or content-related suggestions and potential benefits of hearing the narrative also were reported. The use of personal narrative to raise awareness of the AYA cancer experience in an academic setting is both feasible and effective. Students demonstrated a new or enhanced understanding of AYA cancer and its biopsychosocial implications. We provide evidence to inform the design of awareness interventions directed at similarly aged university students.

摘要

作为一项计划性教育计划的一部分,我们制作了一个个人叙事演示文稿,嵌入了基于证据的数据,以提高年龄在 15 至 39 岁之间被诊断患有癌症的青少年和年轻人(AYA)在年龄相仿的大学生中的认识。该叙事涵盖了从疾病迹象到生存阶段的癌症护理全过程,并纳入了该经历的心理社会方面。演讲者在 2007 年 25 岁时被诊断患有淋巴瘤,她在 2016-2017 年和 2017-2018 年的两个学年中,通过 26 次受邀演讲,将 AYA 数据与她的叙事交织在一起。学生被要求提供匿名的开放式反馈。共收集了 613 份表格,并进行了回顾性双重编码和分析。大多数学生(97%)至少提到了演讲的三个目标之一:(1)提高对 AYA 人群的认识;(2)鼓励关注个人的医疗保健;(3)扩大对癌症(即心理、社会和医疗)在治疗阶段内外的深远影响的认识。还报告了与格式和/或内容相关的建议以及听取叙事的潜在好处。在学术环境中使用个人叙事来提高对 AYA 癌症经历的认识是可行且有效的。学生们对 AYA 癌症及其生物心理社会影响有了新的或增强的理解。我们提供证据,为针对年龄相仿的大学生的意识干预措施的设计提供信息。

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