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多发性硬化症对家庭成员的影响:文献综述

The impact of multiple sclerosis on family members: a review of the literature.

作者信息

Uccelli Michele Messmer

机构信息

* Italian Multiple Sclerosis Society, Healthcare Professional & Client Programs, Via Operai 40, Genoa 16149, Italy;

出版信息

Neurodegener Dis Manag. 2014;4(2):177-85. doi: 10.2217/nmt.14.6.

Abstract

Multiple sclerosis (MS) is one of the most common neurological diseases in young adults and involves inflammatory demyelination of the CNS. MS typically manifests between 20 and 40 years of age, and can lead to significant disability in some cases. The disease course is unpredictable. MS has a significant impact on families, influencing their wellbeing and quality of life, often creating psychological stress in each family member as well as on family functioning in general. Common themes include the impact of the emotional state of the person with MS on family members, the role of the healthy parent on how children cope, the effect of a lack of information about MS, communication within the family and with healthcare professionals, and the importance of assessing and treating families as a dynamic unit in order to assure comprehensive intervention plans. The current literature review is based on 30 full research articles meeting inclusion criteria related to partners/couples, family caregivers, children with a parent with MS and parents of young children with MS.

摘要

多发性硬化症(MS)是年轻成年人中最常见的神经疾病之一,涉及中枢神经系统的炎性脱髓鞘。MS通常在20至40岁之间发病,在某些情况下会导致严重残疾。疾病进程不可预测。MS对家庭有重大影响,影响其幸福和生活质量,常常给每个家庭成员带来心理压力,也影响整个家庭功能。常见主题包括MS患者的情绪状态对家庭成员的影响、健康父母在孩子应对方式上的作用、MS信息缺乏的影响、家庭内部以及与医疗保健专业人员的沟通,以及将家庭作为一个动态单位进行评估和治疗以确保全面干预计划的重要性。当前的文献综述基于30篇符合纳入标准的完整研究文章,这些文章涉及伴侣/配偶、家庭护理人员、父母患有MS的儿童以及幼儿患有MS的父母。

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