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Table 1 Overview of core categories, subcategories and examples of quotes from participants (P)

From: Patients’ experiences of internet-based Acceptance and commitment therapy for chronic pain: a qualitative study

Categories

Examples of quotes

IN TREATMENT

Physical and cognitive restraints

For my part, it was tough, maybe partly because of physical hindrance, since my hands and arms and knees and everything hurts, which makes it difficult to work on a computer. That’s why typing those assignments and all was so hard. Also, my knees start aching after sitting on a chair for some time. So, I suppose it was actual physical obstacles that made it hard (P 1).

Well, you know, getting your head around “what is this and what does it really mean?”. Because, I mean, being in pain, you are a bit dull and sometimes you can’t figure things out. So, one had to stay really focused, that’s what I felt (P 2).

What I had to do was to ask my best friend to come over and she would read it out loud for me while I was lying down resting, and also helped me write. Then I tried on my own and some stuff you must think about yourself and all that. She actually helped me write some stuff because I was under pressure getting it all done. (P 3).

Deadlines and time

Say you’re going once a week to see a pain therapist or something, you work stuff up to talk about when you get there. But maybe you’re not in the mood at that exact hour. Here, you can do it as it comes, so to say and that’s another way (P 4).

And maybe some need a shorter period with more frequent contact. When doing this, perhaps some flexibility would be good, to let the patient choose really, some parts (…) It’s important to listen to that person, how he or she works and such, because then treatment can be adjusted in the best way, you know (P 5).

I mean when I come home, I have to rest first, then you know, it takes time for me. So, an hour or so goes by (…) And one hour every evening means less time for resting. Then I need to reflect and give it some thoughts and work some more on the computer and ask someone to come over and write for me. So, several hours went by (P 3).

Therapist contact

She said it’s common that pain gets worse under pressure. It doesn’t matter where or how it hurts. Stress makes it worse. Good to know really, that you’re not nuts. (P 6).

When I was thinking, I’m not getting this, and what does it really mean? Even if my writing was confusing, we could go through it. It felt good when they called to follow it up to make sure it was carried out, and to get answers to my questions and such (P 2).

But that was actually the benefit because when she questioned me back and so, I had to think about pain in other ways. To not let it tear me down, rather put it aside, let it be, try not to focus on it, do something else, do something fun (…) That’s what you need, a push, some back-up to get started when you’re in pain all the time. Being stuck in pain makes you narrow-minded. That’s why the communication via computer and telephone was truly important to me. (P 7)

It’s easy to get insecure. Or, often I just need to hear another voice saying “How are you? How’s it going?” (…) Not only sit there with a text (…) A bit lonely. (P 8)

Self-confrontation

Well, it’s been so long you tend to forget how it was and who you were. As for now, I’m mostly a pain patient. It’s a good thing to get a feeling of and remembering how I was before and that I do still exist even if I’m another person or something. I’ve still got my … not merely pain, but you know, I’m myself. (P 3).

Well, I suppose it was demanding in the way that … Everything psychological is demanding really; when you’re putting things into words, formulating goals, really feeling, describing and explaining a lot of different things. (P 9)

It was in my head throughout the day the entire treatment time, I felt. Things I ought to do, think over and certain assignments for specific situations. Actually, quite demanding emotionally. (P 9)

It mustn’t go too fast. It takes time to be willing to accept. Accepting that you’re never going to be well and realizing that things are the way they are. It’s awfully hard really. You just can’t. (P 5)

“I’m allowed to focus on myself, to think and contemplate over my situation”. (P 3)

AFTER TREATMENT

Attitudes to pain

Because of the treatment, there’s a continuity all the time. Every week, answering those questions, it actually became a reality (…) It helped me accept this. To actually see this is what it is. To me that’s the greatest change. I probably consider my pain more often now, accepting it kind of. Now, this is it. It takes away like a quarter of me and this is the way it is now. (P 4).

A new attitude to life, I’d say. Stop thinking of what’s coming next. Rather, do it now and do what you can. There’s no idea waiting for better times, because that might never happen since it might never get better than this. And that thing about focusing on the here and now, and not think about other stuff. As when my son comes home from school telling me about his day – I really shouldn’t plan dinner in my head meanwhile. Rather actually listen to him. That I learned during this treatment. (P 1)

But you know, it’s really about facing up to the situation and do the best possible thing. You don’t have much choice. If you don’t try, you’re lost. (P 2)

Imagine all those people running through life without experiencing the here and now (P 1).

To be willing to have. To have what I have so to say. I think I had some trouble relating to that since I’m still trying to find out what this is and I’m still looking for treatments that could ease pain (P 9).

I forced myself because I really wanted to, you know. I wanted a change in life so badly. (P 4)

It costs nothing to try. It can’t really get any worse. (P 6).

Image of pain

I had a grey lump. It was my pain and I could place it on the table and look at it (…) When blaming that thing instead of myself or something else, I can focus on that grey lump which I’d like to beat to death. To get rid of pain (…) I mean, really, the only thing you want is to run away from it. All you want is to get away from it. Far, far away. Think of something else. But like this, it was almost as if I was personalizing pain. Because I made it into a thing, something concrete, as a grey substance. (P 7)

It feels good to sometimes be able to take that substance and move away from it a bit. It doesn’t have to be far. But simply being able to get it off me, hoping it stays put and doesn’t come after. (P 7)

That guy in my body, who is running about hurting me (P7)

Now I sort of feel I’m not carrying pain in a bag, I’m rather holding on to a thin, thin fabric that flows around me (…) Instead of carrying that bag which is damn heavy and hurting my hand, I carry a thin, thin fabric that flies with me. (P 4)

I’m in my pain in a different way now. I can’t see it in front of me. I’m not trying to keep it at a distance. Rather I feel I’m with it most of the time. (P 9).

Control or command

It’s like I’m in command after all. If I’ve set my mind on doing this thing today, pain won’t keep me at home. It means the world to me, that my disease doesn’t knock me out, rather I can knock it out a bit as well. (P 2).

As I understood it, you’re not supposed to be focused on controlling pain all the time, but for me controlling pain makes me able to do more. When I do too much it might result in not being able to do anything for three weeks. (P 1).

I do understand it logically (accepting pain), but I can’t help myself from trying to overcome my pain in other ways, by trying to get help in other ways. Since there are so many other methods. (P 9).

I suppose relaxation techniques helped me the most so to say (…) I did … I have one that’s fairly good. I suppose that’s the one I listen to even now, maybe once, twice a month. Well it does help sometimes if I turn off the TV and just listen to that tape and take it easy for ten minutes. (P 6)

Acting with pain

Pain’s not important. It might be the thing that affects my life the most, but it’s still not important … it’s much better for me to simply do those things I value … It might lead to me being in bed for five days afterwards. But I did do something that mattered to me (…) So constantly, I pay in pain … But on the other hand, I did really achieve something, because if you’re committed to pay with five days of pain for half an hours’ work, then you really know what’s important in life, you know. (P 5)

Sometimes on a Saturday or Sunday, something is going on and I want to join. And then the consequence might be that I’ll be lying down Monday and Tuesday instead. Yeah, that’s tricky. Constantly one needs to prioritize. Choose what not to do (…) It’s extremely difficult to get away from it, because it’s always about being responsible, responsible, responsible. And of course, I want to! I do want to be a responsible person. But you simply can’t when you’re in pain. (P 5)

I want to feel I can do something. I can’t just stay at home. Because there are also good times, actually. Even If I’m never getting well altogether, I do have good times. And why shouldn’t I be able to do something useful of them? (P 2)

Actually, that I’m doing something of my time when I’m well enough to be active … I suppose that’s the greatest change as I see it. (P 7).

It gave me some perspective; I’m not totally stuck with “I can’t”. (P 8).

Since I can’t ride anymore, because of pain in my knees and all, it’s like, just because I can’t ride, I shouldn’t spend time with horses at all. But now I see that, well, its’s all right to go there and simply cuddle for a while or something. I don’t know really, but maybe, being satisfied with that small part at least. Instead of “Well if I can’t have it all I don’t want any of it”- rather I better go out and do something tiny then not doing anything at all. Which makes me feel better as well. (P 1).