Table 2 Quotes about the ET

Expectations of patients

26.

‘That I gain insight in how to handle my body in a good way, without getting to exhausted. I try to listen to my body, I have to because of the pain, but I think I could still learn a lot’

R17 p

27.

‘I hope the training will result in more strength in my legs. Normally I never cycle! It does hurt in my upper legs and my legs get tired, but I’ll try’

R19 p

Experiences of patients

28.

‘I’ve learned not to cross the line over and over again. And because of that, I’m better able to do the things I want’

R22 a

29.

‘The pain is still there and I’m not less tired either’

R54 a

30.

‘I’m less harsh to myself these days. By listening to others, I experienced more self-acceptance.(…) [The other patients] told me about their wheelchairs and that made me think ‘why not?’. My wheelchair will arrive next week’

R17 a

31.

‘I walk more often at home. I feel less scared, because of the training I had at the rehabilitation centre’

R24 a

32.

‘I just couldn’t keep up. With a lót of effort I came to a certain point, but after that I just could not do it anymore, I absolutely couldn’t…’

R55 a

33.

‘[Because of all the activities during the day] I am just tired in the evening. And then you have to start training at nine thirty in the evening. At a certain point I was training in my pyjama’s! That was too much’

R21 a

Expectations of therapists

34.

‘Their endurance will improve due to the training, but I’m not sure whether this will positively influence the fatigue…’

R40 p

35.

‘I hope this will show people that they’re still able to do this, and that they feel ‘I can keep up with this’. Hopefully that will be a start for people to keep training afterwards as well’

R39 p

Experiences of therapists

36.

‘It was quite remarkable that it was possible to train the muscles. You could see people improving over the weeks, and I hadn’t expect that. I thought they would stay on the same level. Even [that patient] who had rather weak legs improved. First in the number of repetitions and later on also in the amount of weight that he lifted’

R40 a

37.

‘[These patients] used to have ‘fighters spirit’ and now they suddenly have to learn not to spill their energy. For this group I therefore try to focus on únderachievement [rather than overachievement]’

R41 a

38.

‘It was very difficult sometimes not to advice the patients on aspects that could influence their behaviour. (…) I think I did advice some patients actually. I’m so used to advising them and I want to help the patients of course, so sometimes I might have given some extra advice when I was chatting with the patient during the training’

R43 a