Working together: understanding job retention in Multiple Sclerosis

Multiple Sclerosis (MS) is commonly diagnosed during key years of paid employment, yet within 10 years up to 80% of people with MS are no longer employed. Previous literature has focused on physical, psychological, and cognitive factors that may contribute as barriers to work. Current UK legislation requires employers to make ‘reasonable adjustments’ for people who disclose a disability. However, people with MS (PwMS) continue to leave work earlier than expected. The aim of this study is to understand more about what helps or hinders PwMS who would like to stay in paid work. Specifically, this research seeks to explore how PwMS, their employers and healthcare professionals can work together to improve job retention in MS. In total, 24 semi-structured interviews were conducted with PwMS who are working, PwMS who have recently left work, and relevant employers and healthcare professionals. Data were analyzed using Critical Grounded Theory. Key themes are identified for each subset and discussed. A core model is synthesized which includes the perspectives of the key stakeholders. Facilitators and barriers to job retention for PwMS are identified at the individual, organisational, and societal levels. The core model identifies five key themes: In/validation, Adjustment demands, Sense of control, Social relations at work, and Constructing social value. Analysis from the Professional data (i.e., employers and healthcare professionals) provides insight to structures that influence these key themes; Knowledge structures, Inter-organisational structures, Socio-relational structures, and Intra-organisational structures. How interventions can best be targeted to reduce barriers to paid work for PwMS is discussed.