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What obstacles get in the way of self managing chronic pain?


ResearchBlogging.org

Learning to manage pain using self management strategies ain’t easy – as we know, changing habits and doing things differently is not something any of us do without a bit of effort. It’s especially difficult when life in general is full of challenges, but so much more so when pain is the problem,you have a mood disorder that saps your energy and when other people (even health professionals!) challenge your decision to manage pain independently. There are even some researchers who would say that using self management strategies is not all that important – after all, after about a year, many people don’t use any of the new skills, but still feel differently about pain anyway (Curran, Williams and Potts, 2009).

The Stepped Care for Affective Disorders and Musculoskeletal Pain (SCAMP) project is a “randomized clinical trial designed to test the effectiveness of a stepped-care approach to deliver a combined medication and behavioral intervention for primary care patients with chronic musculoskeletal pain and depression.” The programme included 12 weeks of antidepressant medication ‘therapy’ followed by six sessions of pain self-management delivered over a further 12 weeks, and was delivered in primary care. The model used was a ‘social cognitive’ one, which essentially aims to enhance self efficacy and social support, and the definition of self management was “the ability to manage the symptoms, treatment, physical and psychosocial consequences and life-style changes inherent in living with a chronic condition.”

The study itself has been discussed in many publications, so I don’t want to review that aspect, but instead look at this paper which, using a qualitative approach, examines “the challenges patients face, particularly when pain is accompanied by depression, in learning and applying self management skills.” And not only look at obstacles, but also facilitators or factors that enhance using these skills.

Focus groups consisting of people who had completed the programme and who were willing to be involved in follow-up discussions, met and the following questions used to guide discussion:

  • What difficulties (if any) has your pain caused in your life?
  • Can you share with us some of the challenges you have faced in managing (coping with, dealing with) your pain?
  • What about some of the successes you have had in managing your pain better?
  • Think of some of the ways or strategies the SCAMP Pain Study taught you to better deal with (manage) your pain.
  • Which of these strategies did you find particularly helpful to better manage your pain?
  • Why did you find these helpful (relieve pain, improve activity, or both)?
  • How did they help?
  • Which of these strategies did you not find helpful?
  • Why?
  • What were some of the challenges that you faced in using these strategies to better manage your pain?
  • Do you think stress or mood problems (such as depression) made using these strategies more difficult?
  • What are some things that made these strategies easy to use regularly?
  • Has anyone learned other ways to manage/deal with your pain that we have not discussed today?
  • Let’s say that this discussion was going to be shared with your doctors with the goal to help them better treat your pain, what would you like to tell them?

(I think these make great questions to ask anyone who has completed a pain management programme, maybe at a six month review!)

What did they find?

Barriers to using self management included – pain, over-reliance on medications, the effect of low mood, inadequate tailoring of coping strategies to the individual, fear of activity and that pain reduction didn’t occur with some of the strategies – amongst a few others.

Facilitators to using self management included – mood improvement, supportive family and friends, support groups, support from nurse care managers (who were responsible for delivering this programme), social comparison (I’m not as badly off as …), being proactive – and others.

The paper discusses each of these factors in a little more detail, but I’m curious about some of the comments.  While it seems that the material delivered looks like much of what almost every self management for pain programme delivers, I wonder how much attention was paid to the cognitive therapy component – identifying and challenging thoughts and beliefs about pain and activity.

Things like “the exercise isn’t suitable for everyone (walking)”, or “I’d love to do it (go walking) but the pain gets in the way” suggests to me that it would be helpful to really work with people as they implement exercise (for example) to challenge the belief that pain needs to stop activity.  At least in the programme I work on, by titrating the activity level, working with small goals and helping people learn how to increase activity, and using effective self talk to challenge the reasoning behind the beliefs about pain, people seem to begin to let pain interfere less with what they want to do.  Recently one person returning for the six week followup said ‘My pain isn’t any different, but I feel differently about it’ – this person said he found himself chasing an animal down the road when he would never have thought this possible before the programme!

I was curious about the indication that over-using medication was problematic – it’s something we’ve discussed within our team, along with the prn use of medications and use of other passive modalities like acupuncture, or injection procedures.  Our thoughts have been that it tends to reduce the confidence people have in their own coping skills because it’s so much ‘easier’ to use medication than to use these other skills.  It seems that in this study at least, their medical providers reinforced the use of medications for pain relief rather than endorsing the use of self management.  I have wondered long and hard about this, because it seems that the medical model is so pervasive it’s very difficult for biomedical clinicians to ‘change tack’ to support nonpharmacological strategies.  I don’t know what the answer is!

In terms of facilitators, it’s great to see that participants in this programme found that improved mood helped them keep on with self management.  While I can understand the hesitation some clinicians have about over-treating depression (“he’s depressed because he’s got pain – reduce the pain and he won’t be depressed any more, simple!”) the debilitating effects of low mood can erode the will to persist with difficult actions.  Not to mention making life more miserable than it needs to be with pain.

The rest of the facilitators were mainly social support – now I’m not sure whether this is because of the social model used in this programme, but it’s a really important finding.  Why?  Well I observed a couple of days ago that the ‘social’ part of the biopsychosocial model sometimes looks like it’s been lost.  As well, it’s really difficult to get family members and others to attend pain management, and one of my recent patients said ‘but this pain is my problem, not my partners, so why would he get involved?’ But no one is a island, and social support to help maintain newly formed habits is really important.  People can make or break self management!  So an important finding was that practice nurses (nurse managers) were thought to be a vital part of maintaining self management.  Maybe that link between delivering a service and the family health centre is one we need to strengthen.

A final comment about support groups – while these can be great, they can also be ugly.  It depends so much on the focus of the group – whether it’s on living well or commiserating about hardship.  If it’s the former I think (don’t have any data on this though!) it’s probably a very positive part of living with pain.  If it’s about a pity party or maintaining an identity as a ‘disabled person’ then maybe it’s less helpful.  And if it’s on a self-destruct path (and I’ve seen this happen), it can be very unhelpful indeed.

Obstacles and facilitators: something to look at more in the future.  Along with defining what self management looks like for each individual – because there is no single recipe for everyone!

Curran, C., Williams, A. C. d. C., & Potts, H. W. W. (2009). Cognitive-behavioral therapy for persistent pain: Does adherence after treatment affect outcome? European Journal of Pain, 13(2), 178-188.

Bair, M., Matthias, M., Nyland, K., Huffman, M., Stubbs, D., Kroenke, K., & Damush, T. (2009). Barriers and Facilitators to Chronic Pain Self-Management: A Qualitative Study of Primary Care Patients with Comorbid Musculoskeletal Pain and Depression Pain Medicine, 10 (7), 1280-1290 DOI: 10.1111/j.1526-4637.2009.00707.x

13 comments

  1. I agree with the concerns about reliance on medications. I think it’s the over reliance not the use itself. How can a person learn how to rely on their self management skills if those skills are not able to do as much or more than the medications? Are there people for whom the skills need longer to set (like jello sets)?

    I was quite surprised myself to find that a little more antidepressant really made a significant difference in the struggling I do with my pain. I am now able to use my skills more successfully.

    The value of coaching is the value of the practice nurse and couldn’t that role be assumed by almost anyone – if the insurances paid for it?

    Thanks for your thoughts!

    1. Hi Esther
      I agree that using medication can be part of the toolkit that people with chronic pain can use to live well. To me it’s about when people have a flare-up, feel horrid, go to their GP for support and the GP (probably without thinking) reaching for a prescription pad!
      It’s great to see a study that asks the people who have done pain management about their own opinions isn’t it?! One of only a few.
      cheers
      Bronnie

  2. Great post. (I almost didn’t read though, being new to this site, because the print was so small! You might want to biggen it a bit.)

    1. Thanks for that feedback Dale – I wish I knew more about how to change the template on here, but I have no idea how! If you are interested, you can change the font size on your screen by using either Mozilla’s ctr+ or on IE, you go to view and font. I hope this helps!
      Love your poetry, btw, it’s fabulous.

  3. here’s a thought about not using the skills after one year…
    Research shows that when we practice a motor skill over and over, there is a change in the baseline activity of the brain in the areas used for the skill. Maybe when we practice self-management over and over, it leads to lasting positive neuroplastic changes that invade our biology 24 hours a day rather than just when we practice.
    After a sufficient period of practice the positive effects last without ongoing conscious practice because the new neural pattern has become strong and because it is now more automatic than conscious.
    No doubt all sorts of other things shift throughout the biopsychosocial spectrum…

    neil

    1. Yes I do wonder about that – I also wonder whether people may have automated the skills to the point that they simply don’t recall their use when asked. Not so sure whether the same changes that occur with motor skills also occur in cognitive skills but I can’t see why not!
      Thanks Neil, food for thought (as always!)

  4. So when you say that the use of passive tends to reduce the confidence people have in their own coping skills, how do you differentiate this from seeking legitimate relief? I had chronic pain for 4 years, and used a variety of self-management skills together with medications. Then I had a sudden exacerbation which derailed me completely and came close to costing me my job, despite my best effort to pace, time-manage, etc., etc. I was in a chronic pain management program at that point, where doctors identified themselves as biopsychological, but primary emphasis was CBT. I was pressured, quite strongly, to just accept the new situation as soon as a single consultant said he could not find a specific problem, people with chronic pain get new chronic pain disorders, and I just had to try harder to accept and cope.

    I went against this advice, and, with some searching and some hard luck, found a (private) physical therapist who took me on, located a potential medical problem, used a joint mobilisation technique together with acupuncture, and after 8 sessions returned me to my original “pre-exacerbation” state – i.e., not “cured”, still having pain daily, but able to cope using self-management and a small amount of medication, and do my work and stay active at the same time.

    I recognize that it could have turned out differently. Yet I don’t see why I should have accepted a life where packing a bag for a trip was a major undertaking spread over 3-4 days and requiring significant coordination with other activities (this was just to keep my pain from completely disabling me, not to stay pain-free, because my baseline was extremely low), when with a little intervention I can now have one where I can pack this same bag in 5-6 hours (with reasonable breaks, because now my baseline is much harder).

    I think many people who say they cannot accept their pain are, like me, just not convinced that everything has been done. Of course, there is a trick of knowing where to stop, but I think it’s dangerous to assume that “passive” forms of relief are inherently bad.

    1. Food for thought, Mary. I can understand your frustration at being advised to ‘just accept the situation’ when there was something that has provided you with pain reduction – at least to your original pain status. I want to take a while to think about how I want to respond, because I can understand what you’re saying yet at the same time the research suggests that passive coping isn’t useful. Maybe it’s a question about when and why they are being used, and what to do during a new pain episode rather than a flare-up?
      Anyway, thanks for posing me something to challenge my thinking!

      1. Hmm… Interesting. I wonder if there are different definitions of “useful” in play here. From my (layman’s) reading of literature, it’s not that the passive methods do not work, it’s that they are not enough in and of themselves. Take painkillers, for example. I think I saw a citation somewhere (maybe even this blog?) that they often reduce pain only by 30%. On the surface, it is not much. On practice, a 30% reduction for me is going from 6 to 4. 6 on my scale is “cannot concentrate or do effective work, will have major difficulties falling asleep”; 4 is “persistent pain that interferes with concentration, but I can get things done with a combination of distraction, breaks and time management”. Now, if painkillers changed my pain from 6 to 4, they haven’t solved the problem. I still have to pace. I still have to time-manage. I still have to accept that pain is there, it is not going away, and I should stay active and get on with my life. So all the things I learned from CBT are very relevant and very necessary. I do practice them in my daily life, too, and I think they are very important. But for me, at least, they don’t help past a certain threshold of pain, and this is where painkillers come in.

        I guess I reacted strongly to the original post because I picked up on this assumption, “doesn’t fully solve the problem = not useful”, and I think this is where a lot of problems came in for my interaction with doctors. There is, of course, always the issue of whether I could learn to do better with self-management, to the point of where I could deal effectively with even higher pain levels without medications. I don’t know. But I also know that I, post-factum, met another person who was in the same program, and they got scared and discouraged by the insistence that painkillers are unhelpful. They did worse than me, actually – because they could not get past the basic premise that medications are not useful, they rejected the whole idea of using self management as an invention by doctors to cut costs and deny care.

        Anecdotal evidence is not the same as studies, of course, and individual people, interaction with the particular therapist, etc., matters hugely. But I appreciate you taking my comments seriously – I enjoy the blog and learned useful things for myself.

      2. In the programme I work in, we encourage participants to weigh up the good and not so good of any and all ways of coping with pain. We encourage people to consider not just the short term effects of any strategy, but the longterm consequences also. The underlying theme is for people to identify what is important to them in terms of values, and to ask whether the strategy they’re using is ‘working’ to help them live the life they want.

        My take on medications taken on an ‘as needed’ basis is that pain intensity fluctuates and often the fluctuations are associated with distress and feeling somewhat helpless. Just by doing something, anything, to take control, the distress levels reduce. This becomes a very powerful reinforcement if medication is the ‘anything’ that is done.

        But pain fluctuations are common, frequent, and typically settle if distress is reduced. If the person is learning to use a new skill such as saying positive coping statements during a flare-up, and goes to see a doctor who then suggests more medication, it’s likely that the person will use the medication rather than learn to use the skill and then trust it.
        Medications that are used routinely (same time, same dose every day) are much less likely to have this effect because the relationship between taking the med and the result is less confounded by emotional/cognitive factors.

        As I said, all coping strategies have good and not so good aspects to them – and short term and long term consequences.

        As for whether something is a new condition or not, it’s always difficult to say. My take is that if it’s a new pain in a new area, then it’s worth checking out – but often the way to manage a new pain, unless it’s able to be surgically managed, is the same as what we do for persistent pain – gentle reactivation. At least, that’s how I manage my own pain!
        Thanks for the great discussion!

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