Netherlands Cancer Institute, Psychosocial Research and Epidemiology Department, Amsterdam, the Netherlands; Netherlands Cancer Institute-Antoni van Leeuwenhoek, Department of Medical Oncology, Amsterdam, the Netherlands. Electronic address: https://twitter.com/BurgersVivian.
Erasmus University Medical Center, Department of Neurology, Rotterdam, the Netherlands.
ESMO Open. 2022 Jun;7(3):100476. doi: 10.1016/j.esmoop.2022.100476. Epub 2022 May 6.
Adolescents and young adults (AYAs, aged 18-39 years) with advanced cancer have an increased life expectancy due to improvements and refinements in cancer therapies, resulting in a growing group of AYAs living with an uncertain and/or poor cancer prognosis (UPCP). To date, no studies have examined the difficulties of health care professionals (HCPs) providing care to AYAs with a UPCP. This study aimed to understand the challenges in daily clinical practice experienced by HCPs from different disciplines who provide palliative as well as general care to AYAs with a UPCP.
HCPs from a variety of backgrounds (e.g. clinical nurse specialists, medical oncologists, neurologists psychologists) were invited for a semi-structured interview. The interviews were transcribed verbatim and analysed using reflexive thematic analysis. Two AYA patients were actively involved as research partners to increase the relevance of the study design and to optimise interpretation of results.
Forty-nine HCPs were interviewed. Overall, we found that the threat of premature death within this young patient group increased emotional impact on HCPs and evoked a feeling of unfairness, which was an extra motivation for HCPs to provide the most optimal care possible. We generated four key themes: (i) emotional confrontation (e.g. feeling helplessness and experiencing a greater sense of empathy), (ii) questioning own professional attitude and skills, (iii) navigating uncertainty (e.g. discussing prognosis and end of life) and (iv) obstacles in the health care organisation (e.g. lack of knowledge and clarity about responsibilities).
HCPs experienced unique emotional and practical challenges when providing care to AYAs with a UPCP. The results from this study highlight the need to develop an education module for HCPs treating AYAs with UPCP to increase their own well-being and optimise the delivery of person- and age-adjusted care.
由于癌症治疗的改进和完善，青少年和年轻成年人（18-39 岁）的晚期癌症患者的预期寿命延长，因此越来越多的患有不确定和/或预后不良的癌症（UPCP）的青少年和年轻成年人存活下来。迄今为止，尚无研究探讨卫生保健专业人员（HCP）在为 UPCP 的青少年和年轻成年人提供护理时所面临的困难。本研究旨在了解来自不同学科的 HCP 在日常临床实践中遇到的挑战，这些 HCP 为 UPCP 的青少年和年轻成年人提供姑息治疗和一般护理。
邀请来自不同背景（例如临床护士专家，肿瘤内科医生，神经科医生，心理学家）的 HCP 进行半结构化访谈。访谈内容逐字记录，并使用反思性主题分析进行分析。两名青少年和年轻成年人患者作为研究伙伴积极参与，以增加研究设计的相关性并优化结果的解释。
对 49 名 HCP 进行了访谈。总的来说，我们发现该年轻患者群体中过早死亡的威胁增加了 HCP 的情绪影响，并引起了不公平感，这是 HCP 提供尽可能最佳护理的额外动力。我们得出了四个关键主题：（i）情感对抗（例如感到无助和产生更大的同理心），（ii）质疑自己的专业态度和技能，（iii）应对不确定性（例如讨论预后和生命末期）以及（iv）医疗保健组织中的障碍（例如缺乏有关责任的知识和明确性）。
HCP 在为 UPCP 的青少年和年轻成年人提供护理时会遇到独特的情感和实际挑战。这项研究的结果强调了为治疗 UPCP 的青少年和年轻成年人的 HCP 开发教育模块的必要性，以提高他们的幸福感并优化提供适合个人和年龄的护理。
