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患有晚期癌症的青少年和青年对希望的真实体验。

The Lived Experiences With Hope From Adolescents and Young Adults Who Have Advanced Cancer.

作者信息

Bennett C Robert, Coats Heather, Hendricks-Ferguson Verna L, Gauthier Kristine, Sousa Karen

机构信息

School of Medicine, University of Colorado Anschutz Medical Campus (C.R.B.), Aurora, Colorado, USA.

College of Nursing, University of Colorado Anschutz Medical Campus (H.C.), Aurora, Colorado, USA.

出版信息

J Pain Symptom Manage. 2022 Apr;63(4):581-589. doi: 10.1016/j.jpainsymman.2021.11.016. Epub 2021 Dec 7.

Abstract

OBJECTIVES

  1. Describe the concept of hope based on perspectives of AYAs who experienced advanced cancer. 2. Differentiate the role hope has for AYAs before, during, and after experiencing cancer.

CONTEXT

In clinical care, addressing patients' hopes may stimulate conversations about their goals, concerns, and values; helping clinicians focus on patient-centered interventions to support the patient's psychological, spiritual, and existential needs.

METHODS

This descriptive qualitative study used a phenomenology informed approach to depict experiences with hope by AYAs who have advanced cancer. The participants completed two semi-structured audio-recorded virtual interviews and co-created narratives and drawings about the role of hope before, during, and after experiencing cancer. Thematic analyses were performed on the narratives.

RESULTS

Fifteen AYAs aged 12-21 years were recruited from an academic medical center and an online non-profit organization. During data collection participants had either completed treatments (60%), or were actively receiving treatments (40%). Approximately 67% of the sample experienced at least one relapse. A main theme identified from the narratives was Transitions of Hope. Participants described differences in their hope before and after experiencing cancer. Participants who experienced a relapse reported their past experiences helped them build hope during their relapse. Participants described a new sense of purpose after experiencing cancer, such as starting a non-profit organization, giving back to others, doing "what I'm passionate about", and honoring the legacies of others.

CONCLUSION

Transitions in the role of hope occurred over time, becoming a source of mental sustenance during cancer treatment, and a source of altruism after experiencing cancer. This study adds to the understanding of hope for AYAs who have advanced cancer.

摘要

目的

  1. 基于罹患晚期癌症的青少年和青年成人(AYAs)的视角描述希望的概念。2. 区分希望在AYAs患癌前、患癌期间和患癌后的作用。

背景

在临床护理中,关注患者的希望可能会激发关于他们的目标、担忧和价值观的对话;帮助临床医生专注于以患者为中心的干预措施,以满足患者的心理、精神和生存需求。

方法

这项描述性定性研究采用现象学方法来描述罹患晚期癌症的AYAs的希望体验。参与者完成了两次半结构化的录音虚拟访谈,并共同创作了关于患癌前、患癌期间和患癌后希望作用的叙述和图画。对这些叙述进行了主题分析。

结果

从一家学术医疗中心和一个在线非营利组织招募了15名年龄在12至21岁之间的AYAs。在数据收集期间,参与者要么已经完成治疗(60%),要么正在积极接受治疗(40%)。大约67%的样本经历了至少一次复发。从叙述中确定的一个主要主题是希望的转变。参与者描述了他们患癌前后希望的差异。经历过复发的参与者报告说,他们过去的经历帮助他们在复发期间建立了希望。参与者描述了患癌后一种新的使命感,比如创办一个非营利组织、回馈他人、做“我热爱的事情”以及传承他人的遗志。

结论

希望的作用随着时间发生了转变,在癌症治疗期间成为精神寄托的来源,在患癌后成为利他主义的来源。这项研究增进了我们对罹患晚期癌症的AYAs的希望的理解。

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