罕见病家庭照护者负担的影响因素及护理干预研究进展
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谈颂,女,博士,主任医师。中华医学会神经 病学专委会委员,中国医院协会罕见病专委会常委。主要研究方 向:周围神经肌肉病、神经免疫、神经系统罕见病

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R47

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四川省科技厅重点研发项目(编号:2021YFS0376)


Advances in research on the influencing factors of family caregiver burden and nursing interventions for patients with rare diseases
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    摘要:

    罕见病患者因病程迁延、疾病复杂及长期治疗等特点,其家庭照护者需持续承担疾病管理、生活照料及心理支 持等多重职责,普遍面临身体、心理、社会经济及信息决策等多方面负担。照护者负担受患者疾病特征、照护者自身因素、家 庭及社会支持、医疗资源与疾病管理等多种因素共同影响,并进一步影响患者的照护质量和疾病结局。本文围绕罕见病患者 照护者负担的主要表现、影响因素及护理干预策略进行综述,重点阐述加强照护者评估与健康教育、提供心理支持与照护者 赋能、完善延续护理与多学科协作以及构建家庭-社区-社会支持体系等护理措施,以期为临床护理实践及相关研究提供参考, 促进患者及照护者生活质量的改善。

    Abstract:

    Patients with rare diseases often experience prolonged disease courses, complex clinical manifestations and the need for long-term treatment. As a result, family caregivers are required to continuously undertake multiple responsibilities, including dis- ease management, daily care and psychological support. Therefore, they commonly experience various burdens related to physical health, psychological well-being, socioeconomic status and information and decision-making. The burden on caregivers is influenced by a variety of factors, including the characteristics of the patient's disease, the caregiver's own factors, family and social support, medi- cal resources and disease management. These influences in turn affect the quality of care and disease outcomes for patients. This article reviews the main manifestations, influencing factors, and nursing intervention strategies of the caregiver burden for patients with rare diseases. It focuses on nursing approaches such as strengthening caregiver assessment and health education, providing psychological support and caregiver empowerment, improving continuing care and multidisciplinary collaboration as well as building a family-commu- nity-social support system. We aims to provide references for clinical nursing practice and related research, thereby promoting improve- ments in the quality of life of both patients and their caregivers.

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徐利霞,林天昌,蒋靖文,魏朝霞,谈颂,冯雪雯.罕见病家庭照护者负担的影响因素及护理干预研究进展[J].实用医院临床杂志,2026,23(5):13-17

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  • 收稿日期:2026-08-24
  • 最后修改日期:2026-08-24
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  • 在线发布日期: 2026-10-10
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