Experiences of persons with multiple sclerosis with rehabilitation—a qualitative interview study

Abstract

Abstract Background Managing multiple sclerosis (MS) includes different treatment approaches. Rehabilitation is a key strategy in MS for improving functioning, activity and participation. As part of a larger study on overall patient experiences with different treatment approaches, this study aims to give an overview of different patients’ experiences and perspectives on inpatient rehabilitation in MS. Methods We conducted problem-centered interviews in 50 persons with MS in Germany, of whom most had relapsing–remitting MS. We used the maximum variation sampling method during recruitment. Data were analyzed thematically. Results As a result of the analysis, three major themes were identified: 1) factors contributing to the decision-making concerning rehabilitation, 2) experience with the rehabilitation setting, 3) benefits of rehabilitation treatments. The treating physicians’ attitude had a major impact on the decision to either opt for rehabilitation or not. Setting goals prior to rehabilitation was given a high priority. Exchanging experiences with other persons with MS presented a major benefit from rehabilitation while for some being separated from regular daily life resulted in a more ambiguous attitude ranging from appreciation of escaping daily hassles to substantial behavioral change management. Conclusion Patients reported various experiences in the process of decision-making with regard to rehabilitation. Physicians´ advice, goal setting and the selection of the most suitable rehabilitation clinic were considered most relevant.

Keywords

• Multiple sclerosis
• Decision-making
• Patient experiences
• Rehabilitation
• Qualitative study
• Thematic analysis