青少年面临生命威胁：一项关于癌症青少年和青年挑战、应对和需求的定性研究。
Facing life-threat during youth: a qualitative study on challenges, coping, and needs among adolescents and young adults with cancer.
机构信息
Department of Palliative Medicine, Faculty of Medicine and University Hospital, University of Cologne, Kerpener Street 62, 50937, Cologne, Germany.
Department I of Internal Medicine, Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany.
出版信息
Support Care Cancer. 2024 Feb 22;32(3):179. doi: 10.1007/s00520-024-08370-0.
PURPOSE
While the unique situation of adolescents and young adults with cancer (AYAs) has become the focus of research and clinical practice, little is known about how they deal with the threat to life at a curative stage. The aim of this study was to obtain insight into the challenges, coping strategies, and needs of AYAs regarding the life-threatening nature of their diseases.
METHODS
Face-to-face in-depth interviews were conducted with patients who were 18-39 years old at diagnosis. The interviews took place 2-5 years after their diagnosis. Patients who were still undergoing treatment or who were suspected of recurrence were excluded. Interviews were transcribed verbatim and analyzed using qualitative content analysis.
RESULTS
Fifteen patients (mean age 27.33 years, nine females) were interviewed in a large comprehensive cancer center in Germany. Before diagnosis, AYAs had not faced their own mortality and had little experience with cancer. The sudden confrontation with a life-threatening disease and therapy, as well as experiencing the death of other AYAs, challenged them. Fear, particularly regarding recurrence and death, and the loss of trust in their own bodies were the major emotions that continued to limit them even after the end of treatment. For mothers, concern of leaving their young children alone was paramount. Coping strategies frequently mentioned were hope, avoidance, self-soothing, and valuing the experience as a chance. Health care professionals were expected to be reassuring, motivating, and open and to provide honest information based on individual and current needs.
CONCLUSION
AYAs appear to cope with life-threats similarly to older patients but have additional unique challenges, including inexperience with life-threatening diseases and responsibility for young children. More research is needed in this area, although it is already evident that AYAs need honest and reassuring communication regarding the life-threat during any curable phases of their disease. Trial registration number DRKS00030277; September 27, 2022 (German Clinical Trials Register).
目的
虽然青少年和年轻成人癌症患者（AYAs）的特殊情况已成为研究和临床实践的重点，但对于他们在治愈阶段如何应对生命威胁知之甚少。本研究旨在深入了解 AYAs 对疾病致命性的挑战、应对策略和需求。
方法
在德国的一家大型综合癌症中心，对 18-39 岁确诊的患者进行了面对面的深入访谈。访谈在诊断后 2-5 年内进行。排除仍在接受治疗或疑似复发的患者。访谈内容逐字转录，并使用定性内容分析进行分析。
结果
在德国的一家大型综合癌症中心，对 15 名患者（平均年龄 27.33 岁，9 名女性）进行了访谈。在诊断之前，AYAs 没有面对过自己的死亡，也没有太多与癌症相关的经验。他们突然面临危及生命的疾病和治疗，以及经历其他 AYAs 的死亡，这对他们构成了挑战。恐惧，特别是对复发和死亡的恐惧，以及对自身身体失去信任，是他们在治疗结束后仍然持续存在的主要情绪。对于母亲来说，最关心的是独自留下年幼的孩子。经常提到的应对策略包括希望、回避、自我安慰和珍惜经历作为机会。医疗保健专业人员应给予安慰、激励和开放，并根据个人和当前需求提供诚实的信息。
结论
AYAs 似乎与老年患者一样应对生命威胁，但也面临额外的独特挑战，包括对危及生命疾病的经验不足和对年幼子女的责任。尽管在疾病的任何可治愈阶段，AYAs 需要关于生命威胁的诚实和安慰的沟通，但在这一领域还需要更多的研究。注册号 DRKS00030277；2022 年 9 月 27 日（德国临床试验注册处）。
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