Background/Objectives: This study assessed how to best prepare pediatric and adolescent cancer patients for amputation and support them afterward. Methods: 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. Results: 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. Conclusions: 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：本研究旨在探讨如何为儿童及青少年癌症患者提供最佳的截肢术前准备及术后支持。方法：本项探索性定性研究通过九名经历截肢手术的儿童及青少年幸存者的视角，深入剖析其截肢前后的真实体验。研究采用时长一小时的半结构化访谈并录音，通过"分类梳理、思考转换"定性分析方法对转录文本进行系统分析。结果：参与者详细描述了术前获得的信息支持，包括对手术预期的指导、与截肢相关组织的联系机会，以及接触实体教具（如膝关节物理模型）的经历。来自其他截肢者及医疗人员（特别是外科医生）的情感支持也被证实具有重要价值。同时，受访者指出了情感关怀方面存在的未满足需求与空白领域，包括术后适应阶段（如基础自我护理与身体限制应对）需要更清晰的指导，以及针对个体学习风格定制信息的必要性。多数人强调需改善疼痛管理资源、拓展患者及其家庭的心理健康服务渠道，并加强对身体意象改变与社会关系调整的支持。参与者还为未来患者提出建议，推荐个性化病房布置、通过社交媒体联系其他截肢者、运用艺术手段处理创伤经历并与截肢告别等策略。结论：通过对九名癌症幸存者的访谈，为改善截肢全过程中以患者为中心的整体护理提供了指导方向。信息支持与情感关怀除需考虑手术时的年龄因素外，更应根据个体的学习风格与特定需求进行个性化定制。
肿瘤(癌症)患者之家