Bastian Tiana D, Burhansstipanov Linda
Professional Data Analysts, Minneapolis, MN.
Native American Cancer Research Corporation, Pine, CO.
JCO Glob Oncol. 2020 Feb;6:161-166. doi: 10.1200/JGO.19.00215.
The purpose of this study was to gain insight into the experiences of Native American cancer survivors in navigating life after cancer and what resources and strategies survivors found useful for coping and achieving optimal quality of life (QoL) after diagnosis (the terms "Native Americans" and "Natives" are used interchangeably in this article to describe American Indians and Alaska Natives). The research questions were What advice and words of wisdom do Native cancer survivors prioritize in messages to other Native cancer survivors? and What do those messages reveal about how Native cancer survivors interpret, experience, and restore QoL after diagnosis?
This study used a qualitative phenomenologic descriptive study design. Researchers used thematic analysis to identify themes related to peer advice and QoL from transcripts of semi-structured interviews with 52 geographically and clinically diverse Native cancer survivors in the United States.
Survivors' lived experiences directly informed their advice to other survivors, which was characterized by four themes: listen to your body, advocate for yourself, embrace your culture and spirituality, and share your story. A deeper look into the origins of those messages revealed challenges survivors face balancing their responsibility to care for themselves while simultaneously embracing cultural values of selflessness.
Providers and researchers should work with Native cancer survivors to identify and leverage existing community strengths in ways that support all aspects of a survivors' QoL rather than limiting support to a single QoL domain (eg, physical, spiritual, mental/emotional, or social issues). Interventions should ensure that supports and services align with survivors' cultural values and attend to competing responsibilities to optimize QoL.
本研究旨在深入了解美国原住民癌症幸存者在癌症后生活中的经历,以及幸存者发现哪些资源和策略对诊断后应对和实现最佳生活质量(QoL)有用(本文中“美国原住民”和“原住民”可互换使用,以描述美国印第安人和阿拉斯加原住民)。研究问题是:美国原住民癌症幸存者在给其他美国原住民癌症幸存者的信息中,优先考虑哪些建议和智慧之言?这些信息揭示了美国原住民癌症幸存者在诊断后如何理解、体验和恢复生活质量?
本研究采用定性现象学描述性研究设计。研究人员通过对美国52名地理位置和临床情况各异的美国原住民癌症幸存者的半结构化访谈记录进行主题分析,以确定与同伴建议和生活质量相关的主题。
幸存者的生活经历直接影响了他们给其他幸存者提供的建议,这些建议有四个主题:倾听身体的声音、自我倡导、接受自己的文化和精神信仰、分享自己故事)。深入探究这些信息的来源发现幸存者面临挑战,即在照顾自己的责任与同时接受无私的文化价值观之间取得平衡。
医疗服务提供者和研究人员应与美国原住民癌症幸存者合作,以支持幸存者生活质量各个方面而非将支持局限于单一生活质量领域(如身体、精神、心理/情感或社会问题)的方式识别并利用现有的社区优势。干预措施应确保支持和服务符合幸存者的文化价值观,并关注相互竞争责任以使生活质量最优化。