A study of the impact of multiple sclerosis on working life and development of a program for cognitive support

The overall purpose is to build new knowledge that will supply the point of departure for the development of interventions to support people with multiple sclerosis (MS) to their desired level of involvement in remunerative employment i.e., to identify modifiable factors that are associated with maintaining, reducing or leaving employment and to ascertain that such interventions are based on processes involved and the meaning attributed to employment as experienced by people with MS.

Methods

For the purpose of a longitudinal study over 10 years of people with MS, data has been collected in a follow-up 10 years after baseline of a cohort of 219 people with MS. Data collected reflect disability known to commonly occur in MS and perceived impact of MS on health. Data on disease-related variables, personal and environmental factors have also been collected, as have data on use of health care, sickness absence and benefit, income and disability pension. In addition, qualitative data will be collected in order to explore the lived experience and decision-making regarding how people with MS maintain, reduce or leave remunerative employment.

Significance

Apart from the financial aspects it is postulated that work contributes to identity and wellbeing and job insecurity has been reported to be associated with decrease in self-rated health in the general population. The individual’s own preferences and perceived competence have been found to be associated with the return to work. Thus workforce participation has implications for health and wellbeing. MS is a neurological disease that frequently affects adults of working age and can result in a range of impairments and activity limitations that in the long term for most people with MS will impact on workforce partici-pation. Although, the literature supports vocational rehabilitation in people with MS, the rationale and the processes are poorly understood and the evidence for its effectiveness is yet to be established. In order to apply a person centered perspective and to develop and evaluate programs that support people with MS to maintain, reduce or leave remunerative employment in a pace and at a point in time in concordance with their preferences, the underlying processes and modifiable factors associated with successful maintenance or transitions in amount of engagement in the remunerative employment among people with MS, need to be identified.

Principal investigator

Sverker Johansson

Senior lecturer/physcial therapist

Scientific publications

2019

Construct validity and test-retest reliability of the Swedish version of the Acceptance of Chronic Health Conditions Scale.
Wallin A, Forslin M, Johansson S, Kierkegaard M
Mult Scler Relat Disord 2019 Oct;35():203-208

2017

Predictors for Employment Status in People With Multiple Sclerosis: A 10-Year Longitudinal Observational Study.
Forslin M, Fink K, Hammar U, von Koch L, Johansson S
Arch Phys Med Rehabil 2018 08;99(8):1483-1490

2016

The Swedish version of the Acceptance of Chronic Health Conditions Scale for people with multiple sclerosis: Translation, cultural adaptation and psychometric properties.
Forslin M, Kottorp A, Kierkegaard M, Johansson S
J Rehabil Med 2016 Nov;48(10):872-879