Background: Cognitive impairment is a prominent feature of multiple sclerosis. However, the impact that cognitive symptoms have on daily life, and the effect this has on persons with multiple sclerosis and their relationship 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 both adults with multiple sclerosis and their partners, to gain further insights into how healthcare professionals can best support families.
Methods: Fifteen persons with multiple sclerosis and their spouses/partners participated in separate telephone semi-structured interviews.
Results: Six themes were identified from the data, along with several subthemes. These were: 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: Our results identified types of support that couples needed and wanted; ways that multiple sclerosis 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 multiple sclerosis. We outline key areas to address these needs identified.