Academic journal article British Journal of Occupational Therapy

Understanding the Lived Experience of People with Multiple Sclerosis and Dysexecutive Syndrome

Academic journal article British Journal of Occupational Therapy

Understanding the Lived Experience of People with Multiple Sclerosis and Dysexecutive Syndrome

Article excerpt


More than a third of people with multiple sclerosis (MS) experience impairment of executive function sufficient to interfere with their daily occupations (Preston et al 2013). Although there is no consensually agreed definition, 'occupation' is generally understood in relation to the things that people do in their daily lives that enable them to look after their basic human needs, pursue their personal interests, and relate to others (Christiansen and Baum 2005). McLaughlin-Gray (1997) argued that occupation is multidimensional, involving a complex combination of the physical, cognitive, sensory-perceptual, and emotional subsystems.

People participate in everyday occupations for a variety of reasons, predominantly determined by the roles they occupy and the predictable patterns that form their everyday routines (Christiansen and Baum 2005). Throughout their lives people establish regular patterns of activity from which they develop habits and routines. Habits develop when there is sufficient repetition in the way the task is performed that eventually the task is completed without much attention or thought (Kielhofner 2002a). Routines develop in response to activities being completed at regular times throughout the day or week, such as morning and night or weekdays and weekends (Kielhofner 2002a).

Routine patterns of behaviour also accompany many of the roles that people assume within their lives. The roles of partner, parent, or employee generate both personal and societal expectations which lead to the subsequent development of patterns of behaviour perceived to be consistent with the specific roles (Kielhofner 2002b). Habituation, therefore, contributes to the development of identity, as roles shape our sense of self, influence our attitudes and outlooks, and evoke certain behaviours consistent with the defined roles (Kielhofner 2002a). We see ourselves and judge ourselves in terms of our own perception of the roles we inhabit (Kielhofner 2002b).

Although occupations are frequently considered within the context of the person's ability to carry out the task, occupation extends beyond the 'doing' paradigm to the meaning and purpose that it creates for the individual participating in or engaging with the task or activity. Aspects of personal effectiveness, importance, or worth attached to the task, and the amount of enjoyment or satisfaction gained from participation, all contribute to the level of motivation and willingness for a person to engage in activity Diagnosis with a chronic illness such as MS can significantly impact on the choice and potential ability to engage in occupations that people find meaningful.

This study attemped to enhance the understanding of how dysexecutive syndrome affects the everyday lives of individuals, within the context of how chronic illness is experienced by people with MS.


In the absence of empirically tested theoretical frameworks or hypotheses, the intention of this study was to develop an understanding of everyday experiences of life with MS and dysexecutive syndrome. This study is contextual in nature and attempts to explore the meanings constructed by the individuals participating in the study who live with MS and executive dysfunction daily. A qualitative design within a phenomenological framework was therefore the most appropriate methodology for this inquiry (Byrne 2001).

The data required for this study were not naturally occurring (Lewis 2005): that is, in our experience people with MS often do not talk about their personal experiences of dysexecutive syndrome. A generated data-collection method was therefore required that would allow the participants to describe their personal experience as they relate to the impact of MS and dysexecutive syndrome on a daily basis, and which would be congruent with the underlying research methodology. As phenomenological research aims to investigate the experiences people have in their everyday lives, the data were generated through semi-structured interviews (Finlay 2006). …

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