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认知障碍对成年多发性硬化症患者及其家庭照顾者的影响。

Impact of Cognitive Impairment on Adults with Multiple Sclerosis and Their Family Caregivers.

作者信息

Halstead Elizabeth J, Stanley Justin, Fiore Damian, Mueser Kim T

出版信息

Int J MS Care. 2021 May-Jun;23(3):93-100. doi: 10.7224/1537-2073.2019-091. Epub 2020 May 15.

Abstract

BACKGROUND

Cognitive impairment is a prominent feature of multiple sclerosis (MS). However, the impact that cognitive symptoms have on daily life, and the effect this has on persons with MS and their relationships with spouses/partners, remains unclear. This qualitative study sought information on the nature of cognitive impairments experienced and the impact of cognitive impairments on the daily lives of adults with MS and their partners to gain further insights into how health care professionals can best support families.

METHODS

Fifteen persons with MS and their spouses/partners participated in separate semistructured telephone interviews.

RESULTS

Six themes and several subthemes were identified: the social impact of cognitive impairments in MS, changes to daily living, relationship quality, communication, ways of coping with MS, and the desire for help in managing MS.

CONCLUSIONS

These results identified types of support that couples needed and wanted; ways that MS affects couples' social lives; that there are difficulties negotiating changes in roles due to cognitive challenges; that there are difficulties coping with the impact of cognitive challenges on daily living; that couples often have difficulty communicating about the impact of cognitive changes on daily living and related issues, which also contributes to relationship strain; and finally, that most participants felt that they did not understand enough about the cognitive symptoms of MS. We outline key areas to address these identified needs.

摘要

背景

认知障碍是多发性硬化症(MS)的一个突出特征。然而,认知症状对日常生活的影响,以及这对MS患者及其与配偶/伴侣关系的影响仍不清楚。这项定性研究旨在了解MS患者所经历的认知障碍的性质,以及认知障碍对成年MS患者及其伴侣日常生活的影响,以便进一步深入了解医疗保健专业人员如何能最好地支持这些家庭。

方法

15名MS患者及其配偶/伴侣分别参与了半结构化电话访谈。

结果

确定了六个主题和几个子主题:MS中认知障碍的社会影响、日常生活的变化、关系质量、沟通、应对MS的方式以及管理MS方面寻求帮助的愿望。

结论

这些结果确定了夫妻需要和想要的支持类型;MS影响夫妻社会生活的方式;由于认知挑战,在协商角色变化方面存在困难;应对认知挑战对日常生活的影响存在困难;夫妻在就认知变化对日常生活及相关问题的影响进行沟通时往往存在困难,这也会导致关系紧张;最后,大多数参与者觉得他们对MS的认知症状了解不足。我们概述了满足这些已确定需求的关键领域。

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本文引用的文献

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Cognitive Impairment in Relapsing-Remitting Multiple Sclerosis Patients with Very Mild Clinical Disability.
Behav Neurol. 2017;2017:7404289. doi: 10.1155/2017/7404289. Epub 2017 Aug 15.
3
A pilot study of a family cognitive adaptation training guide for individuals with schizophrenia.
Psychiatr Rehabil J. 2018 Jun;41(2):109-117. doi: 10.1037/prj0000204. Epub 2016 Aug 22.
4
Illness Perception and Well-Being Among Persons with Multiple Sclerosis and Their Caregivers.
J Clin Psychol Med Settings. 2016 Mar;23(1):33-52. doi: 10.1007/s10880-015-9425-8.
5
Cognitive Enhancement Treatment for People With Mental Illness Who Do Not Respond to Supported Employment: A Randomized Controlled Trial.
Am J Psychiatry. 2015 Sep 1;172(9):852-61. doi: 10.1176/appi.ajp.2015.14030374. Epub 2015 May 22.
6
Anxiety and depressive symptoms in caregivers of multiple sclerosis patients: The role of information processing speed impairment.
J Neurol Sci. 2015 Feb 15;349(1-2):220-5. doi: 10.1016/j.jns.2015.01.024. Epub 2015 Jan 26.
7
Unmet needs of people with severe multiple sclerosis and their carers: qualitative findings for a home-based intervention.
PLoS One. 2014 Oct 6;9(10):e109679. doi: 10.1371/journal.pone.0109679. eCollection 2014.
8
Cognitive impairment in patients with multiple sclerosis predicts worse caregiver's health-related quality of life.
Mult Scler. 2014 Nov;20(13):1769-79. doi: 10.1177/1352458514532398. Epub 2014 Apr 28.
9
Caregiver burden among informal caregivers assisting people with multiple sclerosis.
Int J MS Care. 2011 Summer;13(2):76-83. doi: 10.7224/1537-2073-13.2.76.
10
The effect of social support on the quality of life of patients with multiple sclerosis.
Arq Neuropsiquiatr. 2012 Feb;70(2):108-13. doi: 10.1590/s0004-282x2012000200007.

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