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一项关于继发性淋巴水肿患者出院后自我管理经历与需求的定性研究。

A qualitative study on the post-discharge self-management experiences and needs of patients with secondary lymphedema.

作者信息

Guan Yinyin, Ju Hui, Xu Lanwei, Wan Zhenzhen, Ge Lei, Fang Yuxia

机构信息

Department of Hand, Foot and Micro Reconstruction Surgery, Shandong Provincial Hospital Affiliated to Shandong First Medical University, Jinan, Shandong Province, China.

Department of Hand, Foot and Micro Reconstruction Surgery, Shandong Provincial Hospital, Cheeloo College of Medicine, Shandong University, Jinan, Shandong Province, China.

出版信息

Medicine (Baltimore). 2025 Aug 15;104(33):e43557. doi: 10.1097/MD.0000000000043557.

Abstract

Guided by the Chronic Illness Trajectory Framework, this study aimed to explore the post-discharge self-management experiences of patients with secondary lymphedema following lymphovenous anastomosis surgery, providing evidence for developing targeted interventions. A descriptive phenomenological design was employed. Through purposive sampling, 16 participants who underwent lymphovenous anastomosis surgery were recruited in February 2025. Semi-structured interviews were conducted and analyzed using Colaizzi phenomenological analysis method. Within the dimensional framework of the Chronic Illness Trajectory Model, 7 main themes emerged regarding patients' home-based self-management experiences: inadequate knowledge of postoperative lymphedema rehabilitation, improper self-management practices, barriers to accessing disease management information, challenges in daily life, recognition of and hope for social support, insufficient capacity to manage internal stress, and acceptance of the disease and self-reconciliation. Patients after lymphovenous anastomosis surgery experience multidimensional challenges including informational gaps, functional impairments, and psychosocial adaptation difficulties. A trajectory-oriented care model integrating stepped education, adaptive symptom management, and multidisciplinary support is recommended.

摘要

本研究以慢性病轨迹框架为指导,旨在探讨淋巴静脉吻合术后继发性淋巴水肿患者出院后的自我管理体验,为制定针对性干预措施提供依据。采用描述性现象学设计。通过目的抽样,于2025年2月招募了16例接受淋巴静脉吻合术的参与者。进行了半结构化访谈,并使用科莱齐现象学分析方法进行分析。在慢性病轨迹模型的维度框架内,出现了7个关于患者居家自我管理体验的主要主题:术后淋巴水肿康复知识不足、自我管理行为不当、获取疾病管理信息的障碍、日常生活中的挑战、对社会支持的认可与期望、管理内心压力的能力不足以及对疾病的接受与自我和解。淋巴静脉吻合术后患者经历多维度挑战,包括信息差距、功能障碍和心理社会适应困难。建议采用一种以轨迹为导向的护理模式,整合分阶段教育、适应性症状管理和多学科支持。

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