Engagement in occupations in persons with Multiple Sclerosis

Abstract: The overall aim of this thesis was to increase our knowledge of engagement in occupations in persons with Multiple Sclerosis (MS) in order to develop client-centred occupational therapy and rehabilitation. In study I, observations of the performance of self-care and household occupations were pursued in 44 participants, and study II identified self-perceived problems in performance of occupations in 47 participants. In studies III and IV, in-depth interviews with ten participants revealed experiences related to engagement in occupations and to the process of adaptation of engagement in occupations. The results showed that persons with MS can perceive problems related to all areas of occupations, and at different hierarchical levels. They can be dissatisfied with performance in occupations, especially related to self-care and household occupations and observational assessments confirm that performance in these occupations is impacted on. Furthermore, they can be independent in self-care but dependent in household occupations, and can have problems in their performance regardless of their age, disease severity, or their living arrangements. They can experience that they need to struggle continuously to manage occupations, and that this changes them as a person and make them live their lives differently than they had anticipated. In addition, they experience their adaptation of engagement in occupations as an ongoing, non-linear process, involving both themselves and their family, and they consider who would benefit the most, before they choose their adaptation of engagement in occupations. In summary, this thesis has shown that engagement in occupations in persons with MS is a complex phenomenon. All areas of occupations can be affected, and need to be addressed within occupational therapy and rehabilitation. Clients’ own experiences needs to be elucidated in order to facilitate the reconstruction of self, identity and support the process of adaptation of occupations.