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“这造就了今天的我……”:儿童期、青少年期和青年期癌症幸存者回顾他们的经历。

"It Made Me the Person I Am Today…": Survivors of Childhood, Adolescent, and Young Adult Cancer Reflect on Their Experiences.

机构信息

Department of Psychiatry, Division of Child and Adolescent Psychiatry, Columbia University Medical Center, New York, New York.

Department of Pediatrics, Division of Hematology, Oncology and Stem Cell Transplantation, Columbia University Medical Center, New York, New York.

出版信息

J Adolesc Young Adult Oncol. 2020 Apr;9(2):239-246. doi: 10.1089/jayao.2019.0122. Epub 2019 Nov 18.

Abstract

As survival rates of childhood, adolescent, and young adult (YA) cancers improve, there is a growing population of YA cancer survivors who can provide insight into the lived experience of cancer. The goal of this study was to improve understanding of the cancer experience through interviews with YA-aged survivors. A convenience sample of survivors (age ≥18; remission ≥5 years) was recruited from an urban pediatric hospital. Participants responded to demographic questions, open-ended questions about cancer experience, and optional verbal interview. Responses to questions (written and verbal) were transcribed and coded using thematic analysis to identify common themes. Participants were 18 cancer survivors ( age = 22.17 ± 3.96, 50% male, 33.3% Latino/Hispanic). The main themes reported were as follows: (1) importance of mind-set (reported by 94% of participants); (2) positive transformation (61%); (3) importance of support from medical team (61%); (4) importance of social support (56%); and (5) burden of cancer (44%). Themes of resilience and optimism were pervasive throughout responses. YA-aged survivors were both proponents of adapting a positive mind-set when undergoing treatment, and appeared to maintain this positive mind-set into survivorship by describing cancer as a transformative experience. Cognition, positive change, and social support, are all concepts that could be addressed through targeted screenings and interventions. Fostering a positive lens may help with overall adjustment and mood during treatment, and be protective for physical and mental health.

摘要

随着儿童、青少年和青年期(YA)癌症患者生存率的提高,越来越多的青年期癌症幸存者能够深入了解癌症的真实经历。本研究的目的是通过对青年期癌症幸存者的访谈来增进对癌症经历的理解。从一家城市儿科医院招募了一组便利性样本的幸存者(年龄≥18 岁;缓解期≥5 年)。参与者回答了人口统计学问题、关于癌症经历的开放式问题以及可选的口头访谈。对问题的回答(书面和口头)进行了转录和编码,使用主题分析来确定常见主题。参与者是 18 名癌症幸存者(年龄=22.17±3.96,50%为男性,33.3%为拉丁裔/西班牙裔)。报告的主要主题如下:(1)心态的重要性(94%的参与者报告);(2)积极转变(61%);(3)来自医疗团队的支持的重要性(61%);(4)社会支持的重要性(56%);以及(5)癌症的负担(44%)。韧性和乐观主义的主题贯穿于所有的回答中。青年期癌症幸存者既倡导在治疗过程中采用积极的心态,也通过将癌症描述为一种具有变革性的经历,似乎将这种积极心态保持到了生存阶段。认知、积极变化和社会支持都是可以通过有针对性的筛查和干预来解决的概念。培养积极的视角可能有助于在治疗期间整体调整和情绪,并对身心健康起到保护作用。

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