乳腺癌相关淋巴水肿患者疾病感知的质性研究

Disease perception in patients with breast cancer-related lymphedema：a qualitative study

摘要

目的: 探索乳腺癌相关淋巴水肿患者对疾病感知的特征,为疾病的早期识别诊断与临床干预提供参考。方法 应用现象学研究方法,以自我调节常识模型为理论框架,采用目的性抽样法选取2025年4~6月收治的 16 例乳腺癌相关淋巴水肿患者,实施半结构式访谈收集资料,并采用定向内容分析法进行分析。结果 共提炼出 7 个主题（疾病症状识别、疾病时间线、疾病发生原因、疾病影响、疾病的治疗与管理、疾病一致性、疾病的情绪表征）与 16 个亚主题（患肢肿胀是突出症状、多维症状表现、疾病的反复性、疾病发生的不确定性、疾病的进行性发展、自身预防意识不足、缺少疾病预防知识、日常生活适应性变化、工作适应性改变、自我认同感降低、治疗态度的差异化、管理措施的多样性、与普通水肿混淆、个人价值观与管理意义脱节、交织错杂的负面情绪、情绪的动态变化）。结论 乳腺癌相关淋巴水肿患者缺乏正确的疾病认知,且存在负性情绪问题,医护人员应重视其疾病感知并制定个性化的干预措施,以优化疾病管理,预防乳腺癌相关淋巴水肿的发生、发展。

Abstract

Objective: To explore the characteristics of disease perception in patients with breast cancer-related lymphedema, and to provide references for the early identification, diagnosis and clinical intervention of the disease. Methods: Phenomenological re- search method was adopted, with the self-regulation common sense model as the theoretical framework.Purposive sampling was used to select 16 patients with breast cancer-related lymphedema who were admitted from Apr.to Jun.2025.Semi-structured interviews were con- ducted to collect data, and directed content analysis was used for data analysis. Results: A total of 7 themes and 16 subthemes were ex- tracted.The 7 themes included disease symptom identification, disease timeline, causes of disease occurrence, disease impact, disease treatment and management, disease consistency, and emotional representation of disease.The 16 subthemes were as follows：swelling of the affected limb as a prominent symptom, multi-dimensional symptom manifestation, disease recurrence, uncertainty of disease occu- rrence, progressive development of the disease, insufficient self-prevention awareness, lack of disease prevention knowledge, adaptive changes in daily life, adaptive changes in work, reduced self-identity, differentiation in treatment attitudes, diversity of management measures, confusion with common edema, disconnection between personal values and management significance, intertwined and complex negative emotions, and dynamic changes in emotions. Conclusions: Patients with breast cancer-related lymphedema lack correct disease cognition and have negative emotional problems.Healthcare professionals should pay attention to their disease perceptions and formulate individualized intervention measures to optimize disease management and prevent the occurrence and progression of breast cancer-rela- ted lymphedema.

关键词

乳腺肿瘤 / 淋巴水肿 / 自我调节常识模型 / 疾病感知 / 质性研究

Key words

Breast neoplasms / Lymphedema / Common-sense model of self-regulation / Disease perception / Qualitative study