Carolin Wilharm, Anne Pralong, Mara Weiß, Saskia Blütgen, Michael Hallek, Raymond Voltz, Steffen T Simon, Armin Tuchscherer
{"title":"\"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.","authors":"Carolin Wilharm, Anne Pralong, Mara Weiß, Saskia Blütgen, Michael Hallek, Raymond Voltz, Steffen T Simon, Armin Tuchscherer","doi":"10.1089/jayao.2023.0158","DOIUrl":null,"url":null,"abstract":"<p><p><b><i>Purpose:</i></b> 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. <b><i>Methods:</i></b> 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. <b><i>Results:</i></b> 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. <b><i>Conclusion:</i></b> 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. <b><i>Trial Registration Number:</i></b> DRKS00030277 (German Clinical Trials Register); September 27, 2022.</p>","PeriodicalId":1,"journal":{"name":"Accounts of Chemical Research","volume":null,"pages":null},"PeriodicalIF":16.4000,"publicationDate":"2024-05-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Accounts of Chemical Research","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1089/jayao.2023.0158","RegionNum":1,"RegionCategory":"化学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q1","JCRName":"CHEMISTRY, MULTIDISCIPLINARY","Score":null,"Total":0}
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.
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.