Working life in people with multiple sclerosis

Abstract

Background: Multiple sclerosis (MS) is a chronic disease in the central nervous system, usually with an onset in early adulthood with many years of working age ahead. The employment rate in people with MS (PwMS) is low and associated with low quality of life (QoL). The support for PwMS in working life is despite this limited and needs to be further developed for PwMS to maintain sustainable working life and long-term QoL.

Aims: The overall aim of this thesis was to build new knowledge for the development of interventions to support sustainable working life and QoL in PwMS. The aims for the included papers were: I) to explore predictors for employment status over 10 years; II) to describe and explore the lived experience and meaning of change in working life in PwMS; III) to make the Acceptance of chronic health conditions (ACHC) Scale available in Swedish; and IV) to explore patterns of change over 10 years in functioning and perceived impact of MS, as well as level of acceptance of MS and life satisfaction, in relation to employment status.

Participants and methods: In the exploration of predictors for employment status (Paper I) and patterns of change (Paper IV), 116 PwMS of working age were included from a 10-year follow-up of PwMS. A generalized ordinal logistic regression was used for exploring predictors and Wilcoxon signed rank test for patterns of change. Out of PwMS of working age, 15 PwMS were purposely selected for interviews concerning change in working life. The interviews were analysed with a phenomenological approach (Paper II). For the translation and cultural adaptation of the ACHC Scale, an additional 10 PwMS were recruited from a rehabilitation clinic, while the test of the psychometric properties of the Swedish version of the scale using Rasch analysis, was based in the 10-year follow-up including 148 PwMS of working age and older (III).

Results: Young age, full-time work, high frequency of activities in private life and fatigue were found to predict keeping employment after 10 years. Low perceived physical impact of MS predicted full-time work and full-time or part-time work after 10 years (Paper I). The meaning of change in working life was found to be characterized by a negotiation of what gives life meaning, a disrupted life course, finding meaning through taking control and altered life as usual (Paper II). The ACHC Scale was made available in Swedish with acceptable psychometric properties (Paper III). The PwMS still working after 10 years, were found to be more stable in functioning and perceived impact of MS and had a higher level of acceptance of MS and life satisfaction than the PwMS not working (Paper IV).

Conclusion: This thesis underlines the complexity of working life for PwMS. A holistic perspective is needed for supporting sustainable working life and QoL. Change in working life can be difficult for PwMS and early indicators of problems in working life are therefore valuable for initiating appropriate support for sustainable working life. Maintaining meaningful activities in private life while working, may possibly improve QoL by making the loss of the benefits of work less tangible when ending working life.