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. 2018 Dec 12;43(2):247–256. doi: 10.1080/10790268.2018.1543094
1. “Spasms are signs that you have to take seriously. That’s what they taught us. That comes from pain, right? And if I cannot figure out the cause, or if that's inexplicable, then I'll go to the doctor. Then I go to the family doctor. Or I come here to the outpatient clinic, huh. But it's important to do it timely, huh. One shouldn’t risk anything, huh … You shouldn’t risk anything, huh. This is tremendously important for the overall impact on pressure ulcer prevention.” (T2)
2. “I learned to listen to the signals from my body. I do not feel the pain in my left or right toe, but I can, if I have pain in one foot, I notice that. It gives me prickling, it may give me some spasticity, then I know that there is something wrong and I change my position.” (S1)
3. “If I have to drive to Genoa for six hours or so, then I notice that it's redder than usual. Then I'll arrive at the camping place or at the hotel and then I'll lie down three, four hours, right?” (T4)
4. “If you have a pressure ulcer, if the wound is one cm or a half cm, then you for sure have to lie down for a week to ten days.” (D3)
5. “And not simply saying that the skin is red. They [homecare services] did not do anything. And I didn’t know that you treat the red skin with [skin ointment].” (D1)
6. “I think, as a person with paraplegia, you have to look after yourself a lot. And even if I go to a general hospital, I’ll bring my assistive devices with me because I know best what I need, and then if I cannot do the care by myself, I instruct the staff on how to care for me.” (T1)
7. “We used to have the full responsibility for our own lives. For all things in life. Not just for preventing pressure injuries, but for eating properly, for making all the decisions that you need to make in life, about work or about quality of life, about the adaptation of the house and, and, and.” (S6)
8. “But I did not notice that I had a pressure ulcer over that long time. That was, actually, from above the skin was not open, it developed from the inside.” (S9)
9. “I have to say it very clearly. They [homecare service] wanted to blame me for that. But hold on, who repositioned me? They did it. They should have known how to do the wound treatment and everything. Well, they are not that innocent. That annoys me quite a lot.” (D1)
10. “[…] because there are many with paraplegia who say: “Yes, when I go on vacation, I would like to take a vacation from my SCI.” And that doesn’t work. So there are some people who leave the mirror at home, because they say: “Now I would like to have holidays from my everyday life.” And that won’t work. The SCI comes on holiday with you.” (T1)
11. “But I kept doing sport. I've never been consistently lying down on my stomach and I went to high school. Then I did an internship. Otherwise I could not have done all this. And in this way I preserved a lot of my quality of life.” (S10)
12. “I haven’t had big problems with my skin so far. Not yet. So I hope that stays this way.” (D2, several PIs with hospitalizations and surgeries)
13. “I don’t do anything, absolutely nothing. As little as possible. (Laughter) Body lotion, no. Nothing at all.” (D2)
14. “I try to do everything so that I do not get a pressure ulcer. (laughs) But it is a hard job.” (T4)
15. “And just, to put it in pretentious words, solution-oriented. Just do not stop, but search. Move on. But that’s not always easy (laugh).” (S3)
16. “At the beginning it was a bit difficult. But meanwhile it has become normal. You have to decide, if you want to do something, you have to structure it. […] Certainly this limits my freedom, that I have to structure everything. But I don’t notice that anymore […].” (T5)
17. “So after 36 years, it's so integrated that somehow, that's just normal. […] [In those years it has changed] I don’t feel that taking care of myself is a burden, or something.” (S2)