The effects of MS experienced in the work situation – a qualitative interview study

Abstract

Title: The effects of MS experienced in the work situation Background: One of the most impactful consequences of Multiple Sclerosis (MS) is unemployment: 67.6 % of people with MS are unemployed after a mean disease duration of 22.2 years. Quality of life is reduced in people with MS who are no longer employed. Research from the patient’s perspectives is lacking. Aim and research question: The purpose of this study was to explore how MS influences work, as experienced by people in their working environments. The research question is, ‘How do people with MS experience the effects of MS in their working conditions?’ Method: This is a qualitative study based on the grounded theory. Data were collected through semi-structural topic interviews. Data was analyzed through constant comparison. Results: Twelve MS patients were interviewed. Four themes emerged during analysis. The themes identified were: perceived consequences of MS in the work situation, importance of work, barriers and resources. All participants experienced effects of MS in the workplace. The emotional importance of work was large. The major barrier in the work situation was a lack of understanding from employers and colleagues. However, resources for work continuation were available in various forms. Conclusion: Exploring the perspectives of MS patients in the workplace is a critical step to be able to adapt care to the needs of patients. Information from this study can help caregivers better understand patients’ perspectives. It will help answer questions from patients about job situations in combination with MS. Recommendations: Results of this study can serve as a basis for developing better support. Information given must be consistent with the patients’ perspective. Attention should be given to helping with referrals. Caregivers should be well informed about available resources. These should fit with the barriers experienced by patients.