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Table 3 Quotes of participants on relationships with others and performing activities in daily life and leisure time

From: Content validity of the Dutch Rheumatoid Arthritis Impact of Disease (RAID) score: results of focus group discussions in established rheumatoid arthritis patients and comparison with the International Classification of Functioning, Disability and Health core set for rheumatoid arthritis

Quote number

Quotes

Relationships with others (partners, children and friends)

9

P1.2: You’re in a relationship in a certain way, and if that changes totally, then you can’t, well, blame either one that it doesn’t work anymore. Hey, you lose your job, you’re suddenly sitting at home, you need help and he (patient’s partner) certainly didn’t have that patience. I mean, before I was in the car, there was a period that I was really very stiff and my leg would still be outside and he would step on the gas. He was already driving off! So when it was over I felt like, I don’t have to keep up the pretense. In my marriage, especially the last year, it was very often simply overstretching too much. Because, you know, you want to keep up, be part of it. And be appreciated in that way, so you accept the situation. I couldn’t then, but I can now.

10

P2.1: Even my partner has something …, he understands, but then again he doesn’t.

P2.4: That sounds very familiar.

P2.1: Especially in times when it’s heavy for me, he says: ‘come on, just this little thing’. But then I think: ‘right now you have to leave me be’. And that, that’s so difficult, because if we can’t understand it ourselves, then the other can’t either.

P2.2: No, because in fact the slap on the wrist always comes too late.

P2.5: You never get a warning signal saying: now you should stop.

11

P3.2: I’ve always been a busybody who never stopped going but at a certain moment, I had a friend, and really, my best friend, she just didn’t have a lot of energy intrinsically, and she said at one point, when I became ill, she just didn’t get it. And she said at a certain point, well then I actually got very mad at her, she says: ‘that disease just doesn’t suit you, I don’t understand that you…’ And then I said, ‘well, I think the disease chooses…’

P3.5: Whom does it suit then?

P3.2: …randomly selects someone. How can you say the disease doesn’t suit me? ‘Yes but you always had so much energy’. I say: ‘But I didn’t ask for it, did I?’ Also, she’s the one of all my friends who is the least realistic in coping with my disease, she’s still surprised when I’m not able to do something.

Performing activities in daily life and leisure time

12

P1.4: Yes, you can’t dress yourself anymore. You can’t wipe your bum anymore. You feel, in that moment, you feel a bit powerless. A bit. Look I wasn’t working anymore, but then you really feel switched off.

P1.7: Dependent…

P1.4: Dependent. I mean, if you can’t even slice your own bread…

13

P2.5: When I’m walking somewhere… If I walk for a really long time, or if I’m on a shopping spree with the girls, then really after an hour, then I have to sit down for a bit.

14

P3.4: I’m a big fan of the Antilles. Usually I go with friends, but this winter I’m alone because nobody can get days off. Then I think: oh, should I be doing this? Because then I’ll be there and not able to do anything. So those are, those are actually, small things but…

P3.6: Limitations you have in your life.

P3.2: But don’t you, when you’re there, don’t you have a lot less complaints, because, I swear I really…

P3.5: Warmth

P3.2: …That really has an impact on my body.

P3.4: True, but the flight already takes you a few days to get over.

P3.2: And sitting still all that time.

P3.4: And 6 hours of time difference.

P3.6: Yes, that’s what I mean, I can’t do that. That’s really difficult, traveling is.

P3.4: Yes, so before you’ve slightly…

P3.5: Simply recovered from.

P3.4: And then the fear of, suppose I get something there? Then I think: oh, should I be doing this?

  1. Information on participants: P1.2 (F, 57 years); P1.4 (F, 65 years); P1.7 (F, 65 years); P2.1 (F, 41 years); P2.2 (F, 65 years); P2.4 (F, 79 years); P2.5 (F, 43 years); P3.2 (F, 57 years); P3.4 (F, 56 years); P3.5 (F, 46 years); P3.6 (F, 63 years). F female, M male