Understanding the lived experience of people with multiple sclerosis and dysexecutive syndrome

Abstract

Introduction: While evidence suggests that people with multiple sclerosis experience executive function impairment, there is a lack of understanding as to what this means for people within their occupational lives. This study attempted to explore the meanings constructed by individual participants who live with multiple sclerosis and dysexecutive syndrome on a daily basis.

Method: Ten community-dwelling adults, diagnosed with clinically definite/probable multiple sclerosis and having performed within the ‘Impaired’ category of the Behavioural Assessment of Dysexecutive Syndrome, were invited to participate in semi-structured interviews. The data were analysed using interpretative phenomenological analysis.

Findings: The reported changes in the occupational lives of the participants contributed to significant alterations in the roles they inhabited. There was a substantial cost to personal identity as the participants withdrew from former roles or perceived themselves to be failing within their existing roles, leading to a loss of self-worth and self-esteem.

Conclusion: It is evident from the findings of this study that the actual cognitive deficits did not represent the main issue for people within their everyday lives; rather, the putative consequences of executive dysfunction were of much greater concern for them.

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