calm still afternoon

Accepting pain – or are we measuring something else?


Acceptance. Ask a person living with chronic pain whether they accept their pain and the answer is highly probably a resounding “No!”. It’s a word that evokes resignation, feeling helpless and giving up. Or at least that’s what many qualitative papers seem to show (Afrell, Biguet, Rudebeck, 2007; Baker, Gallois, Driedger & Santesso, 2011; Budge, Carryer & Boddy, 2012; Clarke & Iphofen, 2007; Lachapelle, Lavoie & Boudreau, 2008; Risdon, Eccleston, Crombez & McCracken, 2003). I remember when hearing a person tell me “Oh I accept my pain” thinking that this was often a clear indication that underneath it all, the person was pretty angry about the unfairness of pain impacting on their life.

Acceptance is defined in Acceptance and Commitment Therapy (ACT) as “a willingness to remain in contact with and to actively experience particular private experiences (Hayes, Jacobson, Follette, Dougher, 1994) (eds): Acceptance and Change: Content and Context in Psychotherapy. Reno, Context Press, 1994), and from this Lance McCracken and colleagues developed the Chronic Pain Acceptance Questionnaire. This measure has two dimensions: willingness to experience pain and engaging in values-directed activity despite pain.  The other way acceptance has been defined draws from self-regulation, and argues that withdrawing from goals that can’t be achieved, in order to turn to goals that can be achieved is a positive way to cope with life – acceptance is defined as disengaging from a goal to get rid of pain and instead, re-engaging in other goals that aren’t affected as much by pain.

Lauwerier, Caes, Van Damme, Goubert and Rosseel (2015) have recently published a paper reviewing the various instruments that purport to measure pain acceptance. In their analysis, a coding scheme was developed consisting of the three main aspects of acceptance that seem to represent the concept: disengaging from controlling pain, pain willingness (in certain circumstances), and engaging in other valued activities. These three concepts were drawn from the literature – and then there were the left-over concepts that were also present in measures of acceptance. These are the interesting ones!

The addition five codes were: controlling pain, pain costs, pain benefits, unclear and no fit.

They identified 18 difference instruments, of which five didn’t specifically measure acceptance of chronic pain or illness and were therefore excluded from the study, leaving 13 measures to review. The one mentioned the most in the studies reviewed was the Chronic Pain Acceptance Questionnaire-2o.

Moving on to the results, what did these researchers find? And of course, why does it matter

Well, most of the instruments were measuring aspects of acceptance – the Brief Pain Coping Inventory, Chronic Pain Acceptance Questionnaire-A and CPAQ-20, and the Pain Solutions Questionnaire. The original CPAQ and the PASOL were the only two measures with moderate (but the highest percentage) of items with all three acceptance features (disengagement from pain control, pain willingness, and engaging in activity other than pain control), and interestingly, most instruments included “engaging in activities other than pain control”, while the other two factors were less well-represented.

Even more interesting is that many of the items in these instruments were classified as “controlling pain” – in other words, measuring how willing individuals are to carry on with life without trying to control pain. At the same time, many of the instruments also measured “pain costs” – such as “because of my illness, I miss the things I like to do best”.

Then these researchers did some pretty fancy analysis, looking at dimensions contained within all the items from all the measures. What they found was a 2-dimensional solution, with one dimension going from “fully engaged in valued activities” (my description!) to “pain costs”, and the other axis going from “pain willingness” to “controlling pain”.

Conclusions and why this is important

Most of the assessment measures contained some of the concepts thought to be important in pain acceptance, but the aspect most commonly found was engaging in activities other than controlling pain. Items measuring disengaging from trying to control pain, and pain willingness were found less often, while many measures incorporate pain control, and some that reflected pain costs or were unclear. This research seems to show that engagement in activities other than pain control and pain willingness are key features of items measuring acceptance, but at the same time show that not many measures look at both of these concepts together.  Additionally, this research shows that many supposedly “acceptance” instruments actually measure attempts to control pain but then reverse score these items – this can mean that people using these measures interpret them as avoidance measures rather than willingness to experience pain – appealing to quite a different theoretical model (the avoidance or fear-avoidance model) rather than a pain acceptance model.

Why is this research important? Well, acceptance is still a relatively new concept in pain research and clinical practice. While it has been talked about a great deal, and there are numerous studies of acceptance, the instruments developed for such research have not been around very long, and as we can see, don’t always adequately represent the fullness of the theoretical domains. Some aspects are not well-represented or are at risk of being misinterpreted. What works in a research setting may not always be accurately transferred to a clinical setting, especially if clinicians pick up a new measure without reading the theoretical basis for its development.

I also argue on the basis of my research that “disengaging from trying to control pain” doesn’t only need to be represented by items suggesting that people no longer seek treatment. From my findings based on people who live well with chronic pain, treatment is still a feature – but the investment in the outcome of treatment is far less. It’s less important that the pain is removed, treatment is “an option” rather than a necessary part of “returning to normal”.

I also argue that pain willingness is conditional upon the values placed on the activities the individual wants to do. So, if the activity is boring, unpleasant, hard work or doesn’t have rewards to the individual, the person is more than likely to avoid it, but if it’s highly valued then pain becomes a less dominant factor in the decision to do it.

Why should clinicians care? Because acceptance is an exciting and fruitful aspect of living well with pain that we can incorporate into our treatments. Acceptance is about learning to live well, “being with” or “making space” for the presence of pain, so that the other aspects of life are able to be engaged in. That’s important given how few people can have their pain completely reduced.

 

 
Lauwerier, E., Caes, L., Van Damme, S., Goubert, L., Rosseel, Y., & Crombez, G. (2015). Acceptance: What’s in a Name? A Content Analysis of Acceptance Instruments in Individuals With Chronic Pain The Journal of Pain, 16 (4), 306-317 DOI: 10.1016/j.jpain.2015.01.001

Afrell, M., Biguet, G., & Rudebeck, C.E. (2007). Living with a body in pain — between acceptance and denial. Scandinavian Journal of Caring Sciences, 21(3), 291-296.

Baker, S.C., Gallois, C., Driedger, S., & Santesso, N. (2011). Communication accommodation and managing musculoskeletal disorders: Doctors’ and patients’ perspectives. Health Communication, 26(4), 379-388. doi: http://dx.doi.org/10.1080/10410236.2010.551583

Budge, C., Carryer, J., & Boddy, J. (2012). Learning from people with chronic pain: Messages for primary care practitioners. Journal of Primary Health Care, 4(4), 306-312.

Clarke, K.A., & Iphofen, R. (2007). Accepting pain management or seeking pain cure: An exploration of patients’ attitudes to chronic pain. Pain Management Nursing, 8(2), 102-110.

Eccleston C, Crombez G. (2007). Worry and chronic pain: A misdirected problem solving model. Pain, 132(3), 233-236.

Hayes, Jacobson, Follette, Dougher. (eds)(1994).  Acceptance and Change: Content and Context in Psychotherapy. Reno, Context Press.

Lachapelle, D.L., Lavoie, S., & Boudreau, A. (2008). The meaning and process of pain acceptance. Perceptions of women living with arthritis and fibromyalgia. Pain Research & Management, 13(3), 201-210.

Risdon, A., Eccleston, C., Crombez, G., & McCracken, L. (2003). How can we learn to live with pain?: A q-methodological analysis of the diverse understandings of acceptance of chronic pain. Social Science & Medicine, 56(2), 375-386. doi: dx.doi.org/10.1016/S0277-9536(02)00043-6

11 comments

  1. Principal Component, or Factor Analysis … paralysis I say. I’m surprised that academics try to understand the dimensions of pain, when it’s so much easier to experience it. Take up distance running thru mountainous terrain. It allows experiencing of gut-wrenching costochondritis as your trachea fights to get in bitterly cold air. Or else you can embrace the pain, feeling the roll of your foot as it transitions from pronation to supination. It’s easy to pick which feeling causes the time to pass faster.
    Best of all, the pain stops when you do.

    1. Which is cool – when you don’t have chronic pain. If your pain goes on and on, and there’s no way to alleviate it or completely remove it, then you have a problem. And some people seem to be able to get on with life despite their pain, while others don’t. It’s this problem that the pain acceptance concept attempts to partially explain. Certainly I acknowledge my pain but at the same time experience the joy of dance, the music, my breathing, the rhythm, the impact on the soles of my feet, the swish of my skirts, my arms above my head – and the pain which is still present, but not relevant to my dance.

      1. It’s always harder for the outsider to look in – so inducing suffering offers opportunity to then show empathy. Acceptance continues to confuse researchers, one recently demonstrated an association between mental health and chronic pain. This despite the fact their only significant result came from SF-36 aspects of vitality, and certainly not the mental health component.

  2. There are many studies demonstrating a relationship between low mood and chronic pain. It’s no surprise to me – similar pathways are activated in the brain, cognitions get screwed when pain dominates, and I don’t know about you, but when I’m sore I’m not the most happy chirpy bird around! Especially when sleep is poor.
    And yet, most of the time, pain is just a neutral part of me and I can put it to one side and not let it bother me.
    Oh and some of the similar paths (early childhood trauma, genetic influences) between low mood and chronic pain are present in both populations. It’s not necessarily cause and effect, and it’s not a slight on those who live with chronic pain. It’s also not suggesting chronic pain is psychiatric/psychological – just that there is a relationship there.

  3. I feel like accepting a chronic pain would take a while, as one would most likely continue looking for answers and seeking help for some sort of relief. Fortunately, I am not currently dealing with chronic pain, but I used to have back pain for an extended period of time, and even though it was eventually managed and nothing too serious, I can say that when your back is out of service, you as a whole are pretty much out of service. I have heard of a man who committee suicide due to chronic back pain, and as sad as it is, I can see how it came to that. I wonder if anyone has ever reached out to hypnosis as way to relieve chronic pain. I know it is used for temporary pain such as a tooth extraction or root canal at the dentist but posthypnotic suggestion seems like a possible route for a chronic pain. If it can help people quit smoking, maybe it can at least help a little bit when it comes to mentally blocking pain in the body.

    1. I agree, it seems that acceptance takes a while, as you firstly try to make sense of what’s going on, seek ways to reduce the pain, then eventually decide that this isn’t producing outcomes you want and life is worth more than an endless round of treatments, so you decide to “get on with it”.
      Hypnosis is definitely a treatment that has some support. It doesn’t work by blocking out pain, but it does work by making pain less “bothersome”, sort of detaching the emotional part from the qualities and intensity of pain.

  4. This sounds good only if you don’t have a constant chronic intractable pain, suicide type pain. I have this as many others from medical harm.In 2005 my dura was punctured during a blind esi with depo-medrol, this ended my life at 45 yrs. This pain has never left me since, if it were not for opioids that were introduced to me, after many other invasive procedures. Pain pump, racz procedure etc. I am not a surgical candidate, and was told by a spinal surgeon never let anyone touch your back again. 10 yrs later this pain is controlled with opioids and many supplememts, steroids, and stimulants keep my opioid amounts down. I hate living in this pain, having to take meds daily. Now the government and medical community threatens my existence. The Medical comm put me in this pain, so I ask you ,is this fair to me and the estimated 20 million others suffering from Arachnoiditis bc of negligent drs?

    1. It sounds like you’ve really had a rough time with your pain, and I’m sorry this has happened to you. I also have chronic pain, and although my pain experience is different from yours (because everyone’s pain is different), I know there are times when it feels incredibly tough to keep going. Can I suggest that although your pain intensity seems to be being managed using medications, there are other things making your pain so unbearable: that it’s unfair, that you know who botched the procedure, that your life seems to have stopped ever since and that you can’t see a way to be who you are while also having pain, and that one of the few ways you’ve found to cope might be taken from you without giving you anything else that might help. If I was in your shoes I’d probably feel just as angry and distressed as I think you might feel.
      Pain is so much more than that sensation that wakes you in the middle of the night. It’s all about who you are and what you want to do and how you shape your life to live what’s important to you. That’s why I think it’s unfair to never be offered ways that you can still be who you are as well as living with pain. And even more unfair that so often healthcare professionals don’t look beyond the next jab or drug or surgery, or think that pain is only about what’s going on in your tissues.
      Please, take some time to read through more of what I’ve written about on this blog. If you have questions, don’t hesitate to use the form on my “About” page. You might also really enjoy Joletta Bolton’s blog – http://www.mycuppajo.com. Like you and me, she has ongoing pain. I think she’s awesome and I hope you enjoy what she writes too.
      Take care,
      Bronnie

  5. I find this really degrading to people who deal with MASSIVE amounts of pain that Docs have not experienced and say you must accept this. I do accept it. I will always be in pain and no pain medicine can take it all away. A good attitude, healthy lifestyle and pain medicine at a lower rate however can really make a huge difference instead of this sorry just accept a 9 or 10 on the pain scale all day everyday. No one can do that, it is not reality. You can get the pain down with OTC things, massage, yoga, meditation and yet there you are at a 6-7 on the pain scale to which most Dr.s is still too high a number. So how if they now decide sorry just deal with it no more medicine that works are we supposed to be able to concentrate on those things we need to do to help ourselves despite this pain. I am sorry but try having someone drill a hole in your head while you meditate see how well that works and then tell me to accept said pain. I only have a certain mental and physical capacity to do this which is why they make pain medicine.

    1. Hi Tracy, thanks for taking the time to comment. I can understand how frustrating it is to have someone else tell you what to do about your pain. And it’s scary to think the medications that do help might not be available when you need them. I wish there were better ways to help people with chronic pain, but the really sad thing is that even though there has been millions if not billions of dollars spent on research into pharmaceutical and medical approaches, the truth is our pain medications are not very good. And they don’t help everyone. In fact, in a review of all the medications available for chronic pain, it found that for every one person who got a 50% reduction in pain, three other people had no response at all. That’s a whole lot of money being spent on developing new drugs but very, very few have been found to be effective.
      I am one of these people who doesn’t get any benefit from medication. I couldn’t estimate what my pain is on a scale from 0 – 10 (I don’t think anyone CAN really!), but it’s always there. This acceptance thing isn’t just saying to yourself “Oh yes I’ve got pain”, we KNOW that!! It’s about knowing that the pain doesn’t mean anything bad is going on in your body, you won’t do any more harm if you move, and doing the things that make you feel more like who you really are EVEN THOUGH you have pain. After all, it’s bad enough to have pain all the time, who would want to add to it by not doing things you love to do? I don’t even focus on trying to get my pain down any more because it has a mind of its own, so I just get on with life and do the things that make me feel like I am myself. And when I get tired and over it, I take a break, but my pain doesn’t follow the rules. So I guess I find things that help me feel good about who I am, and I take the time to appreciate what I do have, and that means my life is much more than just pain. I hope you can find someone and something that will help you be who you are, and some space to feel good about what is still good even while you have your pain tagging along.

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