Halstead Elizabeth J, Stanley Justin, Fiore Damian, Mueser Kim T
Int J MS Care. 2021 May-Jun;23(3):93-100. doi: 10.7224/1537-2073.2019-091. Epub 2020 May 15.
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.
Fifteen persons with MS and their spouses/partners participated in separate semistructured telephone interviews.
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.
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.
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。
15名MS患者及其配偶/伴侣分别参与了半结构化电话访谈。
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。
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。