中华护理杂志 ›› 2026, Vol. 61 ›› Issue (13): 1823-1828.DOI: 10.3761/j.issn.0254-1769.2026.13.013

• 多学科协作护理研究 • 上一篇    下一篇

肝豆状核变性患者对低铜饮食依从性的质性研究及护理启示

朱艺航1(), 占婷婷2,*(), 郝文杰2, 屠文洁1, 史金瑞1, 张杏杏1   

  1. 1 安徽中医药大学护理学院 合肥市 230012
    2 安徽中医药大学第一附属医院脑病三科 合肥市 230000
  • 收稿日期:2026-01-20 出版日期:2026-07-10 发布日期:2026-07-01
  • *通讯作者: 占婷婷,E-mail:joygoal1116ting@163.com
  • 作者简介:朱艺航:女,本科(硕士在读),护士,E-mail:18855890303@163.com
    第一联系人:

    朱艺航、史金瑞:研究设计、论文撰写及修改、资料收集与分析;占婷婷、郝文杰:研究指导、论文审阅与修改、基金支持;屠文洁、张杏杏:资料整理与分析

  • 基金资助:
    安徽省自然科学基金(2408085QH283)

Low-copper diet adherence in patients with Wilson’s disease:a qualitative study and nursing implications

ZHU Yihang1(), ZHAN Tingting2,*(), HAO Wenjie2, TU Wenjie1, SHI Jinrui1, ZHANG Xingxing1   

  1. 1 School of NursingAnhui University of Chinese MedicineHefei 230012, China
    2 Third Department of Encephalo-pathythe First Affiliated Hospital of Anhui University of Chinese MedicineHefei 230000, China
  • Received:2026-01-20 Online:2026-07-10 Published:2026-07-01
  • * Corresponding author: ZHAN Tingting,E-mail:joygoal1116ting@163.com
  • Funding program:
    Anhui Provincial Natural Science Foundation(2408085QH283)

摘要:

目的 基于知信行理论,探讨肝豆状核变性患者对低铜饮食依从性的真实想法和需求,为制订针对性干预措施提供依据。方法 采用现象学研究方法,选取2025年6—9月安徽省某三级甲等医院神经内科15例肝豆状核变性患者进行半结构式访谈。并运用Colaizzi 7步分析法进行资料分析。结果 共归纳出3个主题,9个亚主题。对疾病与饮食的认知(对疾病及其治疗必要性认知不到位、低铜饮食知识获取与判断单一);态度、动机与情感的动态交织(态度呈现多元并存、饮食动机的多样性、情绪体验较差、自我效能不足);饮食管理的实践与挑战(个人饮食执行行为薄弱、家庭支持与生活方式调整、低铜饮食实践中的结构性矛盾)。结论 肝豆状核变性病患者对低铜饮食的依从性受到系统知识不足、信念波动和行为执行困难的共同影响。建议制订认知教育、信念强化和行为支持联合的干预模式。开展系统化的饮食教育并加强家庭和社会的支持以提高患者长期低铜饮食治疗的依从性。

关键词: 肝豆状核变性, 低铜饮食, 依从性, 知信行理论, 质性研究, 护理

Abstract:

Objective To explore the thoughts and needs of low-copper diet adherence among patients with Wilson’s disease based on the Knowledge-Attitudes-Practice theory,so as to provide a reference for developing targeted interventions. Methods A phenomenological qualitative research approach was adopted. Semi-structured interviews were conducted with 15 Wilson’s disease patients from the Department of Neurology of a tertiary hospital in Anhui Province between June and September 2025. Data were analyzed using Colaizzi’s seven-step analysis method. Results A total of 3 themes and 9 sub-themes were identified. The knowledge dimension included awareness of disease and diet(insufficient awareness of disease and treatment necessity,limited sources and judgment of low copper diet knowledge). The attitudes dimension reflected dynamic interrelations among attitude,motivation,and emotion(diverse coexisting attitudes,multiple motivations for dietary management,poor emotional experience and psychological adjustment,low self-efficacy and confidence). The behavior dimension encompassed practices and challenges in dietary management(weak personal adherence to dietary practices,family support and lifestyle adjust-ments,structural contradictions in the practice of low-copper diet adherence). Conclusion Adherence to a low-copper diet in patients with Wilson’s disease is jointly influenced by insufficient systematic knowledge,fluctuating beliefs,and difficulties in behavioral execution. A tri-dimensional intervention model of cognitive education,belief reinforcement,and behavioral support is suggested to formulate. Systematic dietary education and enhanced family and social support should be implemented to improve patients’ long-term adherence to a low-copper diet.

Key words: Wilson’s Disease, Low Copper Diet, Adherence, Knowledge-Attitude-Practice Theory, Qualita-tive Research, Nursing Care