PDF(Pubmed)
Abstract：
OBJECTIVE: 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.
CONCLUSIONS: 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).
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.
CONCLUSIONS: 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).
摘要：
目的：虽然青少年和青年癌症（AYAs）的独特情况已成为研究和临床实践的重点，人们对他们如何在治疗阶段处理对生命的威胁知之甚少。这项研究的目的是了解挑战，应对策略，以及AYA对其疾病威胁生命的性质的需求。
方法：对诊断为18-39岁的患者进行面对面的深入访谈。访谈是在诊断后2-5年进行的。排除仍在接受治疗或怀疑复发的患者。访谈被逐字转录，并使用定性内容分析进行分析。
结果：15例患者（平均年龄27.33岁，九位女性）在德国一家大型综合癌症中心接受了采访。诊断前,AYAs没有面对自己的死亡，也没有癌症的经验。与危及生命的疾病和治疗的突然对抗，以及经历其他AYAs的死亡，挑战他们。恐惧,特别是关于复发和死亡，失去对自己身体的信任是即使在治疗结束后仍继续限制他们的主要情绪。对于母亲们来说,最重要的是让他们的孩子独自一人。经常提到的应对策略是希望，回避,自我舒缓，并将体验视为机会。预计医疗保健专业人员会放心，激励,开放并根据个人和当前需求提供诚实的信息。
结论：AYAs似乎与老年患者类似，但也有其他独特的挑战，包括对危及生命的疾病缺乏经验和对幼儿的责任。这方面需要更多的研究，尽管已经很明显，AYAs在其疾病的任何可治愈阶段都需要有关生命危险的诚实和令人放心的沟通。试验注册号DRKS00030277；2022年9月27日（德国临床试验注册）。
方法：对诊断为18-39岁的患者进行面对面的深入访谈。访谈是在诊断后2-5年进行的。排除仍在接受治疗或怀疑复发的患者。访谈被逐字转录，并使用定性内容分析进行分析。
结果：15例患者（平均年龄27.33岁，九位女性）在德国一家大型综合癌症中心接受了采访。诊断前,AYAs没有面对自己的死亡，也没有癌症的经验。与危及生命的疾病和治疗的突然对抗，以及经历其他AYAs的死亡，挑战他们。恐惧,特别是关于复发和死亡，失去对自己身体的信任是即使在治疗结束后仍继续限制他们的主要情绪。对于母亲们来说,最重要的是让他们的孩子独自一人。经常提到的应对策略是希望，回避,自我舒缓，并将体验视为机会。预计医疗保健专业人员会放心，激励,开放并根据个人和当前需求提供诚实的信息。
结论：AYAs似乎与老年患者类似，但也有其他独特的挑战，包括对危及生命的疾病缺乏经验和对幼儿的责任。这方面需要更多的研究，尽管已经很明显，AYAs在其疾病的任何可治愈阶段都需要有关生命危险的诚实和令人放心的沟通。试验注册号DRKS00030277；2022年9月27日（德国临床试验注册）。
