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

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.

Experiences of fatigued persons with multiple sclerosis with multimodal agility-based exercise training and the ReFEx study protocol: a qualitative extension of a feasibility study

“…Namely, the effect of an intervention might not be separable from that exerted of just being in the rehabilitation facility, as this seems to have an important effect, described and experienced by pwMS, as supported by the present results and the ones of Ghaidar et al . 41 Furthermore, in the present setting, participants might have complied with the exercise schedules and tolerated the high frequency of sessions per week, because they knew there were no competing activities (eg, housework, job, family), as otherwise, pwMS have described a need to avoid the experience of fatigue, to continue with their desired activities in daily life. 40 Appropriately, pwMS have also described inpatient rehabilitation with the image of being under a ‘bell-jar’.…”

“… 40 Appropriately, pwMS have also described inpatient rehabilitation with the image of being under a ‘bell-jar’. 41 Two recent RCTs conducted in similar inpatient settings have not yet elaborated on this aspect, but it is noteworthy that in both studies, the control groups tended to also show reductions in fatigue experience, that is, potentially displaying ‘vacation from daily grind’. 42 43 Moreover, it has to be noted that quantifying change in fatigue with established questionnaires, including the ones used in the two recent RCTs and the present feasibility study, proves to be difficult, 22 44 45 which is why qualitative investigations can be seen as a valuable methodology in these instances.…”

“…40 Overall, inpatient rehabilitation could be an environment that allows pwMS to break through a vicious circle as it frees up capacities otherwise occupied by work, caring and other duties, and facilitates experiencing the positive effects of exercise. Appropriately, in a recent comprehensive qualitative study, Ghaidar et al 41 reported factors contributing to the decision of pwMS to attend inpatient rehabilitation in Germany. These included the Open access escape from everyday life, finding time to relax and to fully concentrate on one's health.…”

Targeting Vascular Impairment, Neuroinflammation, and Oxidative Stress Dynamics with Whole-Body Cryotherapy in Multiple Sclerosis Treatment

“…Such rehabilitation should be multidisciplinary and address both motor function and mental status. The rehabilitation protocol itself should be individualized and include physical rehabilitation intended to reduce spasticity and improve balance and posture [112]. Many studies underline the need for continued research into the effectiveness of different physiotherapeutic methods and types of therapies; however, current studies indicate that an effective approach is based on a combination of pharmacological treatment and physiotherapy.…”