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了解多发性硬化症中不同护理人员的经历及其对护理人员负担的影响。

Understanding Diverse Caregiver Experiences and Their Impact on Caregiver Burden in Multiple Sclerosis.

作者信息

Okai Annette, Elter Brian, Williams Mark

机构信息

From the North Texas Institute of Neurology and Headache, Plano, TX.

出版信息

Int J MS Care. 2025 Apr 28;27(Q2):125-133. doi: 10.7224/1537-2073.2024-025. eCollection 2025 Apr.

Abstract

For 80% of people living with multiple sclerosis (MS), informal care is provided by a caregiver. Caregivers spend an average of 6.5 hours a day providing care, which equates to nearly full-time, unpaid work. Although it is widely accepted that informal caregivers play an essential support role in the lives of people with MS, there is a general paucity of MS caregiver research. The findings of the few available research studies are often interpreted from a clinical perspective, without consideration of the many sociocultural aspects that produce a widely heterogeneous population of caregivers and care recipients. For many caregivers, caregiving can be accompanied by considerable burden, which can have a negative impact on their mental and physical health. However, with the lack of diverse caregiver research available, the full extent of the caregiver experience, burdens, and unmet needs is still relatively unknown. In this review, we discuss the key contributing factors to caregiver burden in MS across diverse caregiving groups, identify gaps in our understanding of caregiving responsibilities as they contribute to caregiver burden, and discuss potential strategies and interventions to reduce caregiver burden. We examine these topics from the clinician, caregiver, and care recipient perspectives.

摘要

对于80%的多发性硬化症(MS)患者而言,其非正规护理由照料者提供。照料者平均每天花费6.5小时提供护理,这几乎等同于全职的无薪工作。尽管人们普遍认为非正规照料者在MS患者的生活中发挥着至关重要的支持作用,但MS照料者研究总体上较为匮乏。现有的少数研究结果往往是从临床角度进行解读的,没有考虑到导致照料者和护理接受者群体差异极大的诸多社会文化因素。对许多照料者来说,护理可能伴随着相当大的负担,这会对他们的身心健康产生负面影响。然而,由于缺乏多样化的照料者研究,照料者经历、负担和未满足需求的全部情况仍相对不为人知。在本综述中,我们讨论了不同照料群体中导致MS照料者负担的关键因素,确定了在理解照料责任如何导致照料者负担方面存在的差距,并讨论了减轻照料者负担的潜在策略和干预措施。我们从临床医生、照料者和护理接受者的角度审视这些主题。

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