"The Most Important Thing is That You Are Not Left Alone"-A Qualitative Study of Challenges and Needs of Adolescents and Young Adults with Cancer.

IF 16.4 1区 化学 Q1 CHEMISTRY, MULTIDISCIPLINARY
Carolin Wilharm, Anne Pralong, Mara Weiß, Saskia Blütgen, Michael Hallek, Raymond Voltz, Steffen T Simon, Armin Tuchscherer
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引用次数: 0

Abstract

Purpose: We aimed to gain in-depth insights into the challenges and needs of adolescents and young adults with cancer (AYA) throughout their disease to detect increased needs for support. Methods: We conducted face-to-face interviews with 15 patients 18-39 years old at the time of diagnosis of malignancies who had completed treatment at the time of the interview. The interviews were analyzed using content analysis. Results: The unexpected diagnosis of a serious illness shocked the participants, especially since many were in a life phase of transition at that time and had little knowledge about cancer and its therapy. They reported feelings of helplessness, unfairness, and insecurity triggered by side effects, divergent information from health care professionals (HCPs), or lack of information. After the end of the therapy, many AYAs were challenged by prolonged changes in their lives since they gained strength from the hope of returning to "the life before." The primary needs were social and psychological support, connecting with peers, orientation, and guidance. Conclusion: AYAs face special challenges requiring support and guidance from HCPs that should extend beyond the end of the therapy. There is a need for exchange opportunities with other AYAs. Trial Registration Number: DRKS00030277 (German Clinical Trials Register); September 27, 2022.

"最重要的是你不会孤单"--关于青少年癌症患者的挑战和需求的定性研究。
目的:我们旨在深入了解青少年癌症患者(AYA)在整个患病期间所面临的挑战和需求,以发现他们对支持的更多需求。方法我们对 15 名确诊为恶性肿瘤时年龄在 18-39 岁之间、在访谈时已完成治疗的患者进行了面对面访谈。我们采用内容分析法对访谈内容进行了分析。结果突如其来的重病诊断令参与者感到震惊,尤其是许多人当时正处于人生转型期,对癌症及其治疗知之甚少。他们表示,副作用、医护人员(HCPs)提供的不同信息或信息匮乏引发了无助感、不公平感和不安全感。治疗结束后,许多青壮年患者因希望回到 "以前的生活 "而获得了力量,但他们的生活却面临着长期变化的挑战。他们的主要需求是社会和心理支持、与同伴的联系、定位和指导。结论青壮年患者面临着特殊的挑战,需要保健医生在治疗结束后提供支持和指导。有必要提供与其他亚健康人群交流的机会。试验注册号:DRKS00030277(德国临床试验注册);2022 年 9 月 27 日。
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来源期刊
Accounts of Chemical Research
Accounts of Chemical Research 化学-化学综合
CiteScore
31.40
自引率
1.10%
发文量
312
审稿时长
2 months
期刊介绍: Accounts of Chemical Research presents short, concise and critical articles offering easy-to-read overviews of basic research and applications in all areas of chemistry and biochemistry. These short reviews focus on research from the author’s own laboratory and are designed to teach the reader about a research project. In addition, Accounts of Chemical Research publishes commentaries that give an informed opinion on a current research problem. Special Issues online are devoted to a single topic of unusual activity and significance. Accounts of Chemical Research replaces the traditional article abstract with an article "Conspectus." These entries synopsize the research affording the reader a closer look at the content and significance of an article. Through this provision of a more detailed description of the article contents, the Conspectus enhances the article's discoverability by search engines and the exposure for the research.
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