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多发性硬化症的生活质量的社会情感方面。

Social-emotional aspects of quality of life in multiple sclerosis.

机构信息

a Department of Psychiatry , University of Utah , Salt Lake City , UT , USA.

b Beth Israel Medical Center Neurology , Boston , MA , USA.

出版信息

Psychol Health Med. 2018 Apr;23(4):411-423. doi: 10.1080/13548506.2017.1385818. Epub 2017 Oct 27.

Abstract

Multiple sclerosis (MS) is an inflammatory auto-immune disease of the central nervous system. It leads to many impairments including physical, cognitive, psychological, and social challenges. Our study examined gender and cultural associations with quality of life (QoL), personal characteristics, and benefits from having MS among those with MS. The study was conducted in Austria and the United States. The sample included 128 participants, 64 in each country, of whom 78 were women and 50 were men aged between 20 and 57 years. We used standard statistical tests, including analyses of covariance (ANCOVA) and partial correlations for the analysis of quantitative data. For the qualitative part of the survey we used semi-structured interviews, which we transcribed and coded to identify categories in the answers for qualitative analyses. Austrian participants with MS perceived a higher social-emotional QoL in comparison to American participants. American participants expressed a higher self-esteem in comparison to Austrian participants. Men reported a lower ability to express love than women. Independent of sex/gender and nationality, participants reported benefits through the disease, especially with regard to improved compassion, mindfulness, improved family relations and lifestyle gains. The qualitative interviews revealed additional gender differences for coping with the illness; and in experiences, expectations, and challenges related to MS. These insights can be used to develop targeted psychological and social support interventions aimed toward improving social-emotional QoL for persons with MS.

摘要

多发性硬化症(MS)是一种中枢神经系统的炎症性自身免疫性疾病。它会导致许多损伤,包括身体、认知、心理和社会方面的挑战。我们的研究考察了性别和文化与生活质量(QoL)、个人特征以及多发性硬化症患者从中受益之间的关系。该研究在奥地利和美国进行。样本包括 128 名参与者,每个国家 64 名,其中 78 名女性,50 名男性,年龄在 20 至 57 岁之间。我们使用了标准的统计测试,包括协方差分析(ANCOVA)和偏相关分析,用于分析定量数据。对于调查的定性部分,我们使用了半结构化访谈,我们将其转录并进行编码,以确定答案中的类别,用于定性分析。与美国参与者相比,奥地利多发性硬化症患者感知到更高的社会情感生活质量。与奥地利参与者相比,美国参与者表现出更高的自尊心。男性报告的表达爱的能力低于女性。无论性别和国籍如何,参与者都报告了通过疾病获得的益处,特别是在提高同情心、正念、改善家庭关系和生活方式方面。定性访谈揭示了与疾病应对相关的额外性别差异;以及与多发性硬化症相关的经历、期望和挑战。这些见解可用于制定有针对性的心理和社会支持干预措施,旨在提高多发性硬化症患者的社会情感生活质量。

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