Fair Cynthia, Wurst Bria, Wiener Lori
Department of Public Health, Elon University, Elon, NC 27244, USA.
National Cancer Institute, Center for Cancer Research, National Institutes of Health, Bethesda, MD 20892, USA.
Cancers (Basel). 2025 Aug 24;17(17):2755. doi: 10.3390/cancers17172755.
BACKGROUND/OBJECTIVES: This study assessed how to best prepare pediatric and adolescent cancer patients for amputation and support them afterward.
This pilot qualitative study explored pre- and post-amputation experiences from the perspectives of nine pediatric and adolescent survivors who underwent amputation. Hour-long audio-recorded semi-structured interviews were transcribed and analyzed using the Sort and Sift, Think and Shift qualitative approach.
Participants described the informational supports they received before surgery, including guidance on what to expect, contact with amputation-related organizations, and exposure to tangible tools, such as a physical model of a knee joint. Emotional support from fellow amputees and healthcare providers, particularly surgeons, was also found to be meaningful. Individuals also identified unmet needs and gaps in emotional care. These included clearer guidance on post-surgical adaptations (e.g., basic self-care and navigating physical limitations) and the need for information tailored to their learning styles. Many emphasized the importance of improved pain management resources, expanded access to mental health services for both them and their families, and support in adjusting to changes in body image and social relationships. Participants also shared advice for future patients, recommending strategies such as personalizing hospital rooms, connecting with other amputees through social media, and using art to process their experience and say goodbye to the lost limb.
Interviews with nine cancer survivors provide guidance for improving holistic, patient-centered care throughout the amputation process. Informational and emotional support should be tailored to an individual's learning style and specific needs, in addition to their age at the time of surgery.
背景/目的：本研究评估了如何为儿科和青少年癌症患者截肢做好最佳准备，并在截肢后为他们提供支持。
这项定性试点研究从9名接受截肢手术的儿科和青少年幸存者的角度，探讨了截肢前后的经历。采用“分类筛选、思考转移”的定性方法，对长达一小时的半结构化访谈录音进行转录和分析。
参与者描述了他们在手术前获得的信息支持，包括对预期情况的指导、与截肢相关组织的联系以及接触实体工具，如膝关节物理模型。还发现截肢同伴和医护人员，尤其是外科医生提供的情感支持很有意义。个体也指出了情感关怀方面未得到满足的需求和差距。这些包括关于术后适应（如基本自我护理和应对身体限制）的更清晰指导，以及需要根据他们的学习风格量身定制的信息。许多人强调了改善疼痛管理资源、为他们及其家人扩大获得心理健康服务的机会，以及在适应身体形象和社会关系变化方面提供支持的重要性。参与者还分享了给未来患者的建议，推荐了一些策略，如个性化病房、通过社交媒体与其他截肢者建立联系，以及用艺术来处理他们的经历并与失去的肢体告别。
对9名癌症幸存者的访谈为在整个截肢过程中改善以患者为中心的整体护理提供了指导。除了根据个体手术时的年龄外，信息和情感支持应根据其学习风格和特定需求进行量身定制。
