Background
Materials and methods
Design
Participants
Data collection
Data analysis
Results
Characteristics | N (%) | N (%) | N (%) |
---|---|---|---|
Total (n = 50) | Experience with inpatient rehabilitation (n = 27) | No experience with inpatient rehabilitation (n = 23) | |
Sex | |||
Females | 35 (70) | 19 (54) | 16 (46) |
Males | 15 (30) | 8 (53) | 7 (47) |
Age in years (mean, range) | 44.4 (21 – 61) | 48.9 (32 – 61) | 39.0 (21 – 57) |
Highest professional qualification | |||
No professional qualification | 3 (6) | 0 (0) | 3 (13) |
Vocational education | 27 (54) | 17 (63) | 10 (43) |
Academic degree | 20 (40) | 10 (37) | 10 (43) |
MS type | |||
RRMS | 44 (88) | 21 (48) | 23 (52) |
SPMS | 6 (12) | 6 (100) | 0 (0) |
Duration of MS since diagnosis (mean, range) | 13.4 (2 – 33) | 15.0 (4 – 28) | 11.6 (2 – 33) |
Patient determined disease steps (PDDS) (mean, range) | 2.7 (0 – 7) | 3.6 (1 – 7) | 1.8 (0 – 5) |
Factors contributing to the decision-making concerning rehabilitation
Physical and psychological aspects
“The decision process for the first rehab stay […] happened after diagnosis, or after that first relapse. At that point, I couldn’t decide much for myself. It was just obvious that I required some rehab to help improve my walking.” (pwMS 25).
“This means that the rehab clinic kind of takes you in hand right at the start, because you’ve just received a new diagnosis, everything is different, so much has changed, and you are really frightened […]. I was in a wonderful rehab clinic, and it had a special program, a so-called Training Program, which was like being a beginner at school again.” (pwMS 28).
“And then I was discharged [from hospital], with no advice on what I should do next. All I had was the information on those flyers. The sum of my knowledge when discharged. And then rehab was mentioned. That was at diagnosis time.” (pwMS 42).
“Because I always felt fit enough already, I did sport, and the limitations imposed on my body weren’t so huge.” (pwMS 40).
Expectations and assumptions
“Simply attending rehab with an expectation that then I’ll be better, isn’t workable […] I had set myself the goal of finding out what I could do to help my walking […] most of all for when I was back home, to really consider the question, what can I integrate into my everyday life? It’s no good thinking that a visit to rehab is all it takes.” (pwMS 22).
“I really put that into practice because I believe it is more effective to do something every day than to go to physio once or twice a week, that this is the way to stay fully charged […]. That is what really swung it for me for residential rehab, rather than doing it from home.” (pwMS 7).
“I actually never did rehab. I was always put off by the thought I would see people there who were worse off than me and that this wouldn’t be good for me. That is what has stopped me from going thus far.” (pwMS 2).“Well, you know, going to rehab straight away after that first relapse, seeing other MS patients, the full spectrum from those who are like me, where it’s not visible, to those who are in wheelchairs, that can really pack quite a punch to begin with, it’s quite something to process mentally.” (pwMS 22).
Environmental aspect
“It feels good, simply having time away from work, from family, from everyday life, and immersing yourself there where the subject matter is the disease […]. For it’s not through my illness that I want to live. I am living my life and this darned disease is a companion. But I do not want my everyday life to be defined by the disease.” (pwMS 26).
“No, I’ve never been away on rehab. […] I’d say that’s definitely to do with my husband who said: Well now, what am I supposed to do with the children, and so on and so forth, and somehow it never came to be.” (pwMS 8).
“After the hospital I actually had a really great physiotherapist and […] both my general practitioner and neurologist were people I trusted very much and I didn’t want to leave [these familiar surroundings]. I had a lot of thinking to do and for me the familiar setting was where I needed to do this.” (pwMS 48).
“When I needed help, or when I noticed that I needed some more support, I was sure to go to the clinic. That is ultimately a lot like rehab anyway. You are there and cared for and have the best of therapists.” (pwMS 11).
Information and advice
“The decision for rehab, yes, the first time that was on the advice of the doctors here, the second time there was a little push from the neurologist […]. It’s possible that this was during a phase when I was teetering on the edge a little and she could see that.” (pwMS 5).
“I knew that rehab away might be a possibility. And then I spoke to my neurologist about it and asked him: Is there anything we can do to stabilize my state of health, because I’m just not managing to do this in day-to-day life. […] And then he recommended it to me, and said, yes, this is something we can do.” (pwMS 22).
“I was having issues with my walking […]. And so I asked my neurologist, I said, before it gets worse wouldn’t rehab be an option now, to prevent that? And I was told: No, you are too well for that.” (pwMS 50).
“I attend an MS group with regular meet-ups […] and lots of people there had already been and were really enthusiastic about [rehab residencies]. And that’s when I thought, right, I’m going to do it, too.” (pwMS 21).“You chat about it with people and I also heard: […] “I’ve been in other clinics that were better” and then I researched a bit on the internet to find out what a clinic actually is and what they offer.” (pwMS 22).
Experience with the rehabilitation setting
Communication with other patients
“Yes, it’s a place where you can discuss things with like-minded people. It’s where you get to know the various forms of MS. […]. And it’s also where you discover that MS does not automatically mean a wheelchair and full-time care, and psychologically, that is really important.” (pwMS 5).
“To be honest, your fellow patients are the best therapists. Because we talk a lot to each other, privately, too, not only about the disease, but about everything, for everyday problems still exist for us, too. And that is the best therapy of all.” (pwMS 30).
Distraction from everyday life
“What I also found really great was simply switching off from the world, so that dream holiday that you always longed to have can actually be found at rehab, and it was a really lovely combination of medical input, sport, therapies of every stripe, shape and hue. […] You are away from home and those constant thoughts of tomorrow I have to go back to work, I must do the laundry, when am I going to cook […] instead you simply switch off and truly leave the everyday behind you.” (pwMS 10).
“The thing is, being at rehab for me is a little like being in a bell-jar, for these circumstances are not those of my everyday life. For example, I can get up and turn my attention immediately to the rehab task at hand […] and that is not real life. […] Everyday life is 1000 times more difficult for me than when I can restore away at rehab and […] move a little in the swimming pool or whatever. That is not the major challenge for me. Rather it is that peacefulness you experience at rehab.” (pwMS 35).“Personally, I like being an inpatient for rehab. And I’ve had the good fortune of being in a really excellent clinic. You feel like you are in a bell-jar. Personally, I felt so cared-for there; the people there were great.” (pwMS 40).
Loss of autonomy
“Well, at rehab I also heard a lot of lectures about what you should and shouldn’t eat, but I think for me, the disease already decides so much in my life. So I really don’t feel like being told in addition what I should eat or shouldn’t eat, or when I should be doing sport. That at least I want to decide myself.” (pwMS 10).
“It’s pretty tightly controlled: […] you get given numbers telling you where you have to sit at lunchtime and then that’s checked up on. […] Then in the evening, doors are locked, you can’t go out after 10 pm.” (pwMS 39).
“Within the framework of rehab I always found the external control a real trial and burden and that’s why out-patient rehab was a really good option for me.” (pwMS 3).
Benefits of rehabilitation treatments
Improved activity and participation
“I attended […] medical rehab, […] I had sport therapy there and so on … and I entirely regained my ability to walk.” (pwMS 1).
“Oh yes, simply doing something at last, doing a bit of sport again. […] and then eventually going to bed with that feeling of satisfaction at what I’d achieved that day, for body and soul, and also in terms of friendship and general well-being.” (pwMS 17).
“If I didn’t have rehabilitation in the year, I am quite sure that I would no longer be able to work on account of the fatigue, the exhaustion syndrome, because at rehabilitation I can let myself go entirely, can truly relax, and refuel the energy-tank, and thus be ready to more or less make it through another year of work.” (pwMS 25).
Integration of behavioral techniques into daily life
“When brushing my teeth, alternating from the right to the left leg, just that bit of movement. I learned that at rehab, and I do it. These are the little things that I have built into my everyday now.” (pwMS 25).“And in the clinic I learned about occupational therapy […] for everyday life. Things like how to become more adept with the wheelchair; how to empty the washing machine whilst sitting in a wheelchair, how to hang out washing, how to cook meals, all those kinds of things.” (pwMS 37).
“I stayed at a rehab clinic this year and was particularly eager to discuss nutrition and I had lots of conversations with an assistant nutritional therapist who helped me so much there, who provided me with an incredible number of tips, and that was really like the flicking on of a switch for me.” (pwMS 46).“The time at rehab helped me not only in terms of the disease itself, but also as regards my living environment as a whole, so my perspective on work, on certain personal stories, on problems really changed.” (pwMS 23).