Motivation

The demise of practical pain management


Cast your mind back to the last time you decided to create a new habit. It might have been to eat more healthy food, to do daily mindfulness, to go for a walk each day. Something you chose, something you decided when, where and how you did it, something that you thought would be a great addition to your routine.

How did it go? How long did it take to become a habit you didn’t need to deliberately think about? How did you organise the rest of your life to create room for this new habit? What did other people say about you doing this?

While we all know a reasonable amount about motivation for change – importance and confidence being the two major drivers – and as clinicians most of us are in the business of helping people to make changes that we hope will become habitual, have you ever stopped to think about what we ask people with pain to do?

It’s not just “do some exercise”, it’s often “and some mindfulness”, and “you could probably eat more healthily”, and “organise your activities so you can pace them out” – and “take these medications at this and this time”, “attend these appointments”, “think about things differently”… the list continues.

Now, for a moment, cast your mind back to the last few research papers you read, maybe even a textbook of pain management, the most recent course you went on, the latest CPD.

Was there anything at all on how people with pain integrate all of these things into their life?

Lewis et al., (2019) reviewed inpatient pain management programmes over 5 decades. They found 104 studies spanning from 1970’s to 2010’s. Unsurprisingly the content, format and clinicians involved in these programmes has changed – but you might be surprised at some other changes… Lewis and colleagues found that physiotherapy (primarily exercise) remained at similar levels over time, but programmes gradually became less operant conditioning-based (ie behavioural reinforcement with a focus on changing behaviour) to become more cognitive behavioural (working with thoughts and beliefs, often without necessarily including real world behaviour change), with reduced emphasis on reducing medications and less family involvement. While the same numbers of physiotherapists, doctors and psychologists remain, nurses and occupational therapists are decreasingly involved.

What’s the problem with this? Isn’t this what the research tells us is “evidence-based”?

Let’s think for a moment about effect sizes in chronic pain. They’re small across all modalities when we look at outcomes across a group. There are some gaps in our understanding of what, and how, pain management programmes “work”. We know that movement is a good thing – but effect sizes are small. We don’t know how many people maintain their exercise programmes even six months after discharge. We also don’t know how well movements taught in a clinic transfer into daily life contexts, especially where fear and avoidance are being targeted. We don’t know who, if anyone, carries on using mindfulness, cognitive strategies such as thought reframing or reality testing, and we don’t know many people leave a programme thinking they’ve been told their pain is “in their head” (though, to be fair, this is something we’ve had problems with for at least the 30 years I’ve been doing this work!).

So while assessment might be more “holistic” and outcomes more likely to be about quality of life and disability, the minutiae of how people with persistent pain integrate and synthesise what they learn in pain management programmes into their own life contexts is invisible. It’s not even part of many pain management programmes.

We could turn to the qualitative literature for some insights. Mathias et al., (2014) interviewed people two weeks after completing a programme. Munday et al., (2021) selected people toward the end of a three week programme. Farr et al., (2021) talked to people up to 24 months after a programme – but in the context of a peer-led support group (which, by the way, I think are marvellous!), Penney et al., (2019) interviewed veterans to identify outcomes, barriers and facilitators to ongoing pain management – but don’t indicate how long after a programme their participants were interviewed. So we don’t know what pain management strategies “stick” and remain in use, integrated into daily life.

So many questions come up for me! Do pain questionnaires measure what matters to people? Can a 0 – 10 response on an item of the Pain Self Efficacy Questionnaire (Nicholas, 2007) represent how someone draws on, and uses, coping strategies to do what matters? Does a response on the 0 – 10 Pain Disability Index (Tait, Chibnall & Krause, 1990) adequately capture how a person does their daily life? If we help people “do exercise” but they don’t continue with these exercises once they resume their own life – what is the point? Why are family members not included any more? How does this fit with New Zealand’s Te Whare Tapa Whā model of health?

The problem/s?

The health profession that entirely focuses on helping people do what matters in their life (occupational therapists use occupation or daily doing as both therapy and outcome) has had trouble describing our contribution. We don’t, as a profession, fit well into a medical model of health. We focus almost exclusively on the “Function” and “Participation” parts of the ICF – and we focus on daily life contexts. Researching our contribution using RCTs is difficult because we offer unique solutions that help this person and their whanau in their own context, and no-one’s daily life looks the same as another’s. We are about meaning, expressing individuality and self concept through the way we do our lives. This doesn’t lend itself to a clinic-based practice, or a hospital, or a standardised treatment, or treatment algorithms. Our contribution has been eroded over time. Very few pain management programmes incorporate occupational therapy – most are physiotherapy + psychology. This is especially noticeable in NZs ACC community pain management programmes.

Pain management is often based on the assumption that if a person is told what to do, perhaps gets to do it in a clinic with a therapist, this is sufficient. And for some people, especially those who view themselves in the same way as therapists (ie, individual responsibility), and people with the psychological flexibility and internal resources to just do it, they may do quite well. BUT consider the people we know who don’t. People from different cultures, lower socio-economic living, neurodiverse, those with competing values, lack of confidence, lack of personal agency – these are the people who don’t do as well in all of our healthcare, and especially those programmes relying on “self-management”.

Programmes also assume that what is done in a clinic can readily transfer to daily life. Clinics are contained, often purpose-built, usually regulated, and have a therapist handy. People are there for the one purpose. Daily life, on the other hand, is highly variable, holds multiple competing demands, other people question what you’re doing and why, is quite chaotic and messy. And there is no therapist. How does a person decide what to do, when, how, and why?

Remember your challenges with developing one new habit. How you had to stake a claim in your own life to create space for this new activity. How you sometimes forgot. How a change in one part of your life undermined you doing this new thing. How this was only one change. Only one. And what do we ask people with pain to do? And we don’t even bother to find out what is still being done 12 months down the track.

Practical pain management is about helping someone work out how to organise their week so they can add in this new exercise programme that might help, alongside having time and energy to be a good Mum, pick the kids up from school, sort the washing, do the groceries, oh and the car needs a new warrant, and I need a new prescription for my meds.

It’s about working out the best time of day to do some mindfulness – when will it do the most good? when can I fit it in? how do I deal with my partner wanting to get out and start the day while I’m meditating?

It’s about communicating to my boss, my colleagues and my customers that I need to get up and walk around – and maybe say no to some new projects at the moment. Perhaps I need to be more assertive about my own needs. Perhaps I’m worried I’ll lose my job because I need to make these changes….

In the rush to streamline pain management to the bare bones, I wonder if we have forgotten who it is all about. He tangata, he tangata, he tangata – it is people, it is people, it is people. Let’s remember that coping strategies and exercise and all the psychological approaches need to be continued for months, and even years. And this means helping people work out what our suggestions look like in their own life. Let’s not omit the profession that puts people and what their daily life looks like as its reason for being.

Tait, R. C., Chibnall, J. T., & Krause, S. (1990). The pain disability index: psychometric properties. Pain, 40(2), 171-182.

Farr, M., Brant, H., Patel, R., Linton, M. J., Ambler, N., Vyas, S., Wedge, H., Watkins, S., & Horwood, J. (2021, Dec 11). Experiences of Patient-Led Chronic Pain Peer Support Groups After Pain Management Programs: A Qualitative Study. Pain Medicine, 22(12), 2884-2895. https://doi.org/10.1093/pm/pnab189

Lewis, G. N., Bean, D., & Mowat, R. (2019, Sep). How Have Chronic Pain Management Programs Progressed? A Mapping Review. Pain Practice, 19(7), 767-784. https://doi.org/10.1111/papr.12805

Mathias, B., Parry-Jones, B., & Huws, J. C. (2014). Individual experiences of an acceptance-based pain management programme: An interpretative phenomenological analysis. Psychology & Health, 29(3), 279-296. https://doi.org/10.1080/08870446.2013.845667

Nicholas, M. K. (2007, Feb). The pain self-efficacy questionnaire: Taking pain into account. European Journal of Pain, 11(2), 153-163. https://doi.org/http://dx.doi.org/10.1016/j.ejpain.2005.12.008

Penney, L. S., & Haro, E. (2019). Qualitative evaluation of an interdisciplinary chronic pain intervention: outcomes and barriers and facilitators to ongoing pain management. Journal of Pain Research, 12, 865-878. https://doi.org/10.2147/JPR.S185652

What goes wrong in pain rehabilitation (2)


One size does not fit all. Cookie cutter treatments fail to take into account the huge variability each person brings into a clinical encounter, particularly when the person is living with persisting pain. Not really earth shattering news, is it?!

Let me unpack this one.

When we’re treating a person with an acute musculoskeletal injury, let’s say a lateral ankle sprain, I’m going to hazard a guess that most of the recovery occurs without our assistance (don’t shoot the messenger – go read Chen et al, 2019). In essence, we’re creating an environment that supports tissues to do what they do well – get on with healing. Because of this, there’s good reason to follow a basic treatment algorithm that will work for most people. That is, unless or until recovery stops for some reason.

It’s here that algorithms begin to lose utility, because the factors that are implicated in delayed recovery are many and varied – and it’s important to narrow down the particular factors involved for this person with their ankle.

So, IMHO, cookie cutter treatments begin to fall apart when recovery is slower than expected because there are a heap of variables involved. And yet what do I see? “Oh it failed but let’s do the same thing again but harder!” or “the person wasn’t doing their exercises” or “it must be psychosocial factors.”

Well, no, actually, perhaps psychosocial factors are involved, but they were there from the outset (just ignored because the tissue-based factors capture our attention). And no, doing the same thing again but harder leads to the same outcome, only more disappointing. And we have no idea whether the person was, or wasn’t doing their exercises – or whether the prescribed exercises were useful, or whether they even make much of a difference anyway! (again, don’t shoot the messenger, go read Wagemans, et al 2022).

But probably the most heartbreaking thing about using “one size fits all” is that this doesn’t take into account this person’s goals, lifestyle, current priorities, other contextual factors like workplace, family and friendship obligations that are integral to being a person, not just a lateral ankle sprain.

I once worked at a chronic pain centre where every person was assessed by three clinicians: a medical practitioner for diagnosis and medication management; a psychosocial clinician to understand life stressors and the person’s understanding of their pain and their current coping strategies; and a person who assessed how he or she was managing with daily life and functional activities. What I couldn’t understand was how almost every patient was given the same management plan: to try some drugs, see a psychologist, and do a home exercise programme. Come to the centre to see each clinician on a different day of the week. Irrespective of the unique presentation, the same recipe was given. The ingredients might have been a little different when the person was seen for treatment, but without fail, the basic elements were exactly the same.

How is this person-centred care? What if this person was a 4 wheeldrive off-roading enthusiast who loved to go fishing? What if this person was a traveling sales rep with a well-developed meditation practice? What if this person had five kids and couldn’t get to the pain centre for the twice weekly appointments? What if this person was hankering after spending some time with other people who were also living with pain so she could hear that she wasn’t alone, and could pick up tips from people who knew what it was like?

Today I still hear of people being given a copy of “Explain Pain”, get to do the “Protectometer” and then told to go see the physio and psychologist. Nothing about the person’s desire to work out the impact pain has on their daily life, nothing about the understanding the person already has about their own pain fluctuations, and nothing that’s tailored to what this person needs and wants to do.

Seriously folks, pain rehabilitation and management is all about tailored, bespoke, clever therapy based on what the person needs and wants to do, what they already know and bring to their own recovery, and it probably needs to include connection with other people who are in the same situation. Why? Because while “other people” might not give the advice the journal articles recommend, they offer advice from their own experience. And mostly, people with persisting pain need affirmation that they’re resilient, capable, knowledgeable and can work a way through this.

Maybe what we need to do is include people who live with pain in service design (Sandvin Olsson, et al., 2020) – and pain management delivery (Farr, et al., 2021). It seems to work.

Chen, E. , McInnis, K. & Borg-Stein, J. (2019). Ankle Sprains: Evaluation, Rehabilitation, and Prevention. Current Sports Medicine Reports, 18 (6), 217-223. doi: 10.1249/JSR.0000000000000603.

Farr, M., Brant, H., Patel, R., Linton, M. J., Ambler, N., Vyas, S., Wedge, H., Watkins, S., & Horwood, J. (2021, Dec 11). Experiences of Patient-Led Chronic Pain Peer Support Groups After Pain Management Programs: A Qualitative Study. Pain Med, 22(12), 2884-2895. https://doi.org/10.1093/pm/pnab189

Sandvin Olsson, A. B., Strom, A., Haaland-Overby, M., Fredriksen, K., & Stenberg, U. (2020, Aug). How can we describe impact of adult patient participation in health-service development? A scoping review. Patient Educ Couns, 103(8), 1453-1466. https://doi.org/10.1016/j.pec.2020.02.028

Wagemans, J., Bleakley, C., Taeymans, J., Schurz, A. P., Kuppens, K., Baur, H., & Vissers, D. (2022). Exercise-based rehabilitation reduces reinjury following acute lateral ankle sprain: A systematic review update with meta-analysis. PLoS One, 17(2)http://dx.doi.org/10.1371/journal.pone.0262023

Rehab fails: What goes wrong in pain rehabilitation (1)


Well obviously I’m not going to cover everything that goes wrong – and certainly not in one post! But inspired by some conversations I’ve had recently, I thought I’d discuss some of the common #fails we do in rehabilitation. Things that might explain why people with pain are thought to be “unmotivated” or “noncompliant” – because if the rehab doesn’t ‘work’ of course it’s the person with pain who’s at fault, right? So for today, here goes.

Starting at the wrong intensity

One of the main things that happens when someone’s in pain is to reduce overall activity level. Pain has been called “activity intolerance” and it’s common for people to stop doing. So naturally when a clinician is developing an activity or exercise programme, the aim is often to simply increase how much movement a person does in a day. So far, so good. Muscles and cardiovascular systems improve when we use them.

But guess what? There’s a person inside that body! And people have minds. Minds with opinions about everything and in particular, anything to do with doing. There’s often a “should” about how much movement or activity to do. This rule might be based on “pain is a sign of tissue damage” so anything that increases pain clearly “should not be done”. There may equally be a “should” about how much exercise this person used to do, or wants to do, and often mental comments about “what kind of a person does this amount of exercise.”

I’ve heard good clinicians say that their patients “have unrealistic goals” – this is probably because the person’s mind has an opinion about what he or she “should” be able to do!

What can good therapists do about this? Well, firstly to ignore the person who inhabits the body is plain wrong. Secondly, flashy gadgets like coloured tapes or special elastics or foam thingies probably won’t do much for the person’s opinionated mind except to temporarily distract — oooh! shiny!!

Something I might do would be to ask the person what level they think they can begin at – beginning where the person is at, and moving at his or her pace is a solid foundation for developing a relationship where experimenting with movement becomes about the person and his or her relationship with their body. I think one of the aims of movement rehabilitation is to help the person develop trust in their own body and how it moves, so enhancing playfulness and experimentation can be a good start.

I might ask the person “what shows up when we begin doing this set of movements/exercises”? By “showing up” I’m talking about thoughts, images, sensations in the body that pop into a person’s mind (minds are soooo opinionated!). We might need to guide the person to notice quick thoughts or images, to put words to emotions and feelings, and to get in touch with fleeting sensations in the body.

Some of the things I’ve heard people say include: “only weak losers would call this exercise”, “I used to be able to lift 40kg sacks of cement and now all I can move is this pathetic 5kg dumbbell”, “he wants me to do what?! I hate boring exercises”, “but what am I going to feel like tomorrow?”

What do we do with these thoughts?

First: make room for them to be present. Don’t quickly deny them “Oh of course you’re not weak”, “5kg isn’t pathetic”, “exercise is great fun”, “you’ll be fine, you can do this”. Saying these sorts of things dismisses the validity of the person’s fears and won’t win you any friends.

Second: empathic reflection. Indicate that you’ve heard what the person has said, validate that this is their experience, their thoughts. Something like “it’s a long way from what you used to lift, and that’s hard”, “it’s tough beginning to build up again”, “you’re worried that this is going to be unrewarding”, “you’ve had pain flare-ups before, and it’s hard to deal with”.

Third: Ask the person where they’d like to begin, put them in control of the intensity. Then ask them “how do you think that’s going to pan out” – in other words, will their option get them to where they want to be? What’s good about it? What’s not so good about it? from their perspective not yours! The idea is to establish how workable the person’s starting point might be. It might be perfectly fine, even if it’s not your choice!

Fourth: Affirm that the choice is the person’s – and that this is an experiment that will be reviewed at the next session. You might say something like “So you’d like to try doing 5 minutes of walking instead of the treadmill that I suggested, because you think this shouldn’t flare your pain up as much. What’s your choice now that we’ve talked about the good and not so good? We can review it next time.”

Fifth: Review how it went at the next session! Note down the rationale the person had for the level of intensity they chose, and then review how well that intensity worked from this perspective. For example “you wanted to do 5 minutes of walking because it wouldn’t flare you pain up as much, what did you notice? What showed up? How well did it work?” Notice all the open-ended questions, the reminder that the person thought this intensity wouldn’t flare their pain as much, and the focus on workability. Because at the beginning of a movement or exercise programme, what you’re looking for is adherence, sticking to the level of intensity chosen. Habits take time to make, and often adhering to a programme is because the opinionated mind is having a go at the person, interfering with their willingness to stick with it. If we avoid that roadblock, we have at least one point on the board.

Your opinionated mind might now be telling you that “oh they’ll never make progress at that pace”, “they’ll do themselves an injury if they lift that much”, “this is just pandering to their lack of motivation”

Be careful! At this point you could reflect on what’s showing up for you. Are you worried their outcomes will reflect badly on you? Do you only have a few sessions with the person and need them to get somewhere or you’ll have failed? Make room for those uncomfortable feelings. Let them be present and listen to what your opinionated mind is telling you. Maybe remind yourself that outcomes don’t depend on you – they depend on the person sticking to the programme, and a programme that doesn’t start because the person’s mind tells them it’s not worth it is a #rehabfail Remember also that you’re aiming for the person to gain confidence in their body, learn to listen to what happens when they try something out – the repeated progress reviews you do with the person are the actual active ingredients in therapy, they’re the bits that help the person to reflect on what works, and what doesn’t. That’s gold.

ps The technique I’ve described above is – gasp! – a psychological approach, based on ACT and motivational interviewing. You won’t find a specific study examining this approach in journals (at least not in a cursory search like I did!), but it’s an application of well-studied approaches into a movement or exercise context. It’s the same approach I use in contextually-relevant occupational therapy. Reading Bailey et al, 2020, affirms to me that we have a way to go to define and measure adherence, so I feel justified in using these strategies!

Bailey, D. L., Holden, M. A., Foster, N. E., Quicke, J. G., Haywood, K. L., & Bishop, A. (2020, Mar). Defining adherence to therapeutic exercise for musculoskeletal pain: a systematic review. Br J Sports Med, 54(6), 326-331. https://doi.org/10.1136/bjsports-2017-098742

Eynon, M., Foad, J., Downey, J., Bowmer, Y., & Mills, H. (2019). Assessing the psychosocial factors associated with adherence to exercise referral schemes: A systematic review. Scandinavian Journal of Medicine & Science in Sports, 29(5), 638-650. https://doi.org/10.1111/sms.13403

Levi, Y., Gottlieb, U., Shavit, R., & Springer, S. (2021). A matter of choice: Should students self-select exercise for their nonspecific chronic low back pain? A controlled study. Journal of American College Health, 1-7. https://doi.org/10.1080/07448481.2021.1960845

Why do people with pain report differently on questionnaires than they do in physical performance testing?


One of the topics thrown around by people who don’t have an up-to-date understanding of pain is why people say one thing on a questionnaire, for example, what they can and can’t do, and perform quite differently when asked to do the same task in a clinic. It’s a good question, on the face of it: after all, people should know what they can and can’t do, and be consistent. If there is a difference, well obviously the physical performance test is far more objective than self-report – the therapist is right there watching, so there’s no room for doubt about which measure is The Most Accurate.

The main reason, according to these clinicians, for someone doing differently in the clinic compared with self-reporting, has to be because they’re biased. The person wants to misrepresent what they can and can’t do. Of course.

Superficially, and if you’re not knowledgeable about pain, behaviour, context and human interaction, you could be forgiven for accepting the idea that what you see in clinic is consistent with what’s being done in every day life. The physical movements are pretty much the same and the person is just being asked to do something they do all the time.

BUT – and it’s an enormous exception – humans are not robots. Not body bits that move when they’re pulled like a puppet on a string. People are meaning making, interpreting, social creatures with rapidly responding body systems that represent contexts in relation to memories, predictions and current demands.

I wrote a talk recently on some research that made my heart sing a bit. As an occupational therapist, my profession has long recognised that doing activities (occupations) that hold meaning is quite a different thing from doing a-contextual, meaningless movements. This is why occupational therapists are known to ask about what matters to you, and to use meaningful activities/occupations both as therapy and as outcome (Hitch & Pepin, 2021). The research I referred to was a proposal for an “ecologically grounded functional practice” within rehabilitation (Vaz, Silva, Mancini, Carello & Kinsella-Shaw, 2017). In this paper, the authors point out that “improvements at one level of functioning might not transfer immediately to other levels” and by this they mean that elbow flexion/extension improvements may not transfer into a person being able to feed themselves. They also pointed out that when people perform well-rehearsed activities in the context of goal pursuit – such as getting dressed, ready for work; catching a ball as part of a fast-moving game of netball; hammering a nail – the movements are not just about motor control, they’re about goal-directed behaviour in a context with an interaction between the person, the environment, any tools, the purpose of the activity and so on.

For example, if I want to eat soup, I not only need to have sufficient elbow flexion/extension, I also need to know where the soup bowl is (tried eating soup while lying down?), the texture of the soup (is it thick, thin, lumpy?), the heat of the soup (hot, cold, spicy) and even the social context – I might be OK slurping when I’m on my own, but I’m less inclined to slurp when in polite company. The way in which I carry out the flexion/extension will be very different with each contextual variation.

OK. So context matters, and both the what and why of movement will influence how I go about my performance.
What else?

Well, with a painful condition and especially when I’m not confident I can do it without increasing my pain, I’m much more likely to attempt a difficult movement task in the presence of someone who can monitor what I’m doing. Firstly that person might stop me if they think I’m doing something harmful (professional liability insurance offers some protection!). Secondly, it’s a lot harder to say “no” to someone who is right there in the room! This is called “demand characteristics” and has been associated with problems of the rubber hand illusion (Lush, Vazier & Holcombe, 2020). If someone expects you to do something, you’ll probably do it – because we social creatures don’t like to offend, because the person may inadvertently signal the response they want (see link).

There are other reasons people don’t report the same level of disability on a questionnaire and in physical performance testing: they don’t measure the same things, people forget (especially if they haven’t tried in a while), the day of physical performance testing could be a bad day (or a good day), in physical performance testing the person is usually asked to do it maybe once or twice – in daily life that same activity might be carried out many times across a day, week, month. The environment in a clinical testing environment is typically well-lit, the space around the person is clear, the noise level is usually reasonably low, the floor surface is flat and usually hard lino and free of rugs or pets, there’s minimal distraction, the only thing the person has to think of is this one movement – they’re not picking up the washing off the floor while rushing to put it in the washing machine before dashing out the door to pick the kids up from school.

Even the questions are different – “does pain interfere with…?” is a different question from “can you step up onto this step using a hand rail?”

And don’t let me even start on the meaning of performance either way – for example, if the person is really keen on getting knee surgery, might “good” performance mean they, without even knowing it, alter how they do a movement? What if the person is apprehensive about how the results of this testing might affect their rehabilitation and return to work – again without even knowing it, might this not have some influence on how the person performs?

Testing and measurement is a core skill and research area in psychology. Dang, King & Inzlicht (2020) offer some really good insights into the reasons responses differ between self-report and performance, and to be fair, they don’t even consider the influence of pain and physical capability as I have above. Pain-related performance is a specialty area of its own, nonetheless we can still draw from their paper because many of the problems they recount are absolutely part of pain and disability self-report and physical performance.

They describe the reliability paradox (that reliability = variance between individuals divided by variance between individuals + error variance) – in other words, we need low levels of between-person variability so that any experimental manipulation is maximised. But in real life, we almost always exhibit variability in our performance – so the reliability of two measures limits the correlations that can be observed between then, with lower reliability leading to weaker observed correlations.

The authors also describe the very different response processes involved in self report and performance – as I mentioned above, self-report measures ask people to reflect on what they do in real life in many different contexts that are unstructured. Performance measures take a snapshot based on performance in specific and highly structured situations. Self-report measures capture a person’s perception of their capabilities whereas physical performance reflects the observations of someone else. And performance assessments generally tap into peak performance, not daily performance – tapping into some of the discrepancies we see between “can do” and “will do” (competence-performance discrepancy).

So, when you read arguments on social media from well-known physiotherapists suggesting that the person who reports a difference between what they perceive they can do, and what they have done in a physical performance test is “biased”: know that we have absolutely NO WAY to determine “bias”, “malingering”, “faking bad”, “faking good” – and that there are many well-understood reasons for the difference in performance. Read this paper for more on why we can’t detect “malingering” in people with pain: Tuck, N. L., Johnson, M. H., & Bean, D. J. (2019, Feb). You’d Better Believe It: The Conceptual and Practical Challenges of Assessing Malingering in Patients With Chronic Pain. J Pain, 20(2), 133-145. https://doi.org/10.1016/j.jpain.2018.07.002

Dang, J., King, K. M., & Inzlicht, M. (2020). Why are self-report and behavioral measures weakly correlated?. Trends in cognitive sciences, 24(4), 267-269.

Hitch, D & Pepin, G. (2021) Doing, being, becoming and belonging at the heart of occupational therapy: An analysis of theoretical ways of knowing, Scandinavian Journal of Occupational Therapy, 28:1, 13-25, DOI: 10.1080/11038128.2020.1726454

Lush, P., Vazire, S., & Holcombe, A. (2020). Demand characteristics confound the rubber hand illusion. Collabra: Psychology, 6(1).

https://methods.sagepub.com/reference/the-sage-encyclopedia-of-communication-research-methods/i4252.xml

Self-care


No, not the Instagram “self-care” of floofy slippers and a glass of wine, or an excuse to indulge in chocolate. No, I’m talking about the gritty self-care that all of us humans need to do, only some of us need to it more regularly or we’ll experience Consequences.

Self-care for people living with pain is no luxury, and it does (occasionally) mean walking away from something enjoyable, setting boundaries on demands for time and energy, AND it means many other things too.

I’ll talk about my own self-care needs because I can’t talk authentically about anyone else. Most of you will know I live with fibromyalgia, and that I’m pretty happy with my lifestyle and dealing with pain. Mostly it’s just a nuisance that I live alongside, and make room for. Sometimes it’s a PITA, and over the last year it’s been more of that and less of the “just a nuisance”.

My fibromyalgia involves widespread body pain (currently neck/shoulder but randomly goes to other places – maybe for a holiday? Who would know!). I also experience fatigue. In fact, the pain is nothing to bother me because I know it’s not a sign I’ve harmed myself – it’s the fatigue that is a killer. Probably the most difficult thing to deal with.

So when I went to a conference, and had a few late nights it didn’t surprise me to feel exhausted. I’m lucky in that I can take a couple of days off for some downtime, and I slept and now I’m pretty much back to normal. Except that it’s a short week with Easter coming up, and I have a whole day out because of a procedure – and I’m teaching Thursday night while also having some other deadlines coming up.

Lurching from frantically catching up to crashing is called “boom and bust” in our persistent pain language. According to conventional pain management wisdom (based on books like Manage Your Pain by Prof Michael Nicholas) pacing is The Way to Go. And there’s some merit in the idea of being consistent in what to expect from yourself, building up from a baseline to what works for you in your life context, to reduce the number of times you have to apologise for not being able to do something because you’ve either flared or you’re fatigued.

The problem with pacing is that we still have little agreement on what we mean by the word (is it gradually increasing activity levels? is it stopping before we flare up? is it planning each moment of the day, breaking each task into 10 – 20 minutes with a break in between? is it about using time instead of pain/fatigue as the guide for what you do?). There’s even less evidence to support pacing as a strategy – few randomised trials of pacing and studies have shown associations between pacing and avoidance. Yet it remains one of the more popular and widely-endorsed strategies for living well with persistent pain.

Coming back to self-care, one of the issues for me is to understand how I get into the situation where my fatigue and pain begins to interfere with my plans. Is it my planning that’s awry? Should I say no more often? Should I ask for help more often? Am I bad for pushing myself? Am I over-reaching myself, spreading myself too thin?

And even as I ask these questions of myself, I feel my mind judging me. After all, I should know better! I’ve been living with pain most of my life. I teach people about pain. I’ve worked clinically. Seriously I ought not to do this to myself. I should be perfect!!

Well, as anyone who knows me is perfectly aware: I am not perfect. And I mess up. I did last week when I completely forgot an appointment with someone because my mind was fried.

Here’s the thing though. This amount of self-analysis, of questioning, of planning, of organising around something that I never asked for, is what anyone with persistent pain goes through. And the often-glib “go exercise” or “just pace” or “let’s ignore pain and pretend it’s not a thing” often fails to touch the constant demands that living with a chronic/ongoing health problem poses. The negative and critical mind is prone to sniping at the “who” I am, while onlookers, clinicians in particular, might not even be aware of just how brutal and energy-sapping this process is. Every. Single. Day.

I do not have a glib answer to how best to live well with pain, and as you can tell I’m still learning even 35 years down the track! I do know I’m determined, and that drawing on values and being flexible about how I do what matters in my life has meant I’ve stayed working (even in a demanding job), kept on playing (creative pursuits are like oil on dry skin), learned to keep my eyes on the prize and not sweat the small stuff…

This post is a plea to health professionals working with people who are in the early stages of living with persisting pain: don’t add things to a person’s life without thinking about the constant juggle the person will need to do often for the rest of their life. Don’t make up another list of exercises, or make suggestions about another technique to add in to their already busy daily life without asking yourself “Could I do this every day? In the presence of ongoing pain?” Ask yourself, too, whether you’re implying that this person is “doing it wrong.” Think hard about all the things each person needs and wants to do in their life – if you’re going to suggest adding yet another thing into their day, consider what this person might need to abandon to fit it in, think about when and where and how this person can do what you’re suggesting.

When we’re clinicians, we can be prone to suggesting that people with pain “aren’t motivated.” I reject this – motivation isn’t a trait, or a quantity we’re given or not given. Motivation is about importance, and confidence. And for so many people with pain, confidence is very very low. Saying no to things requires confidence. And sometimes saying no is the hardest thing.

Self-care. It’s a life-long commitment to being vigilant about the choices I make every day, because the consequences of not caring for myself can be tough to swallow. And yet it’s also OK to mess up and to be with that flare or fatigue, and remember what matters in life.

Modifying pain behaviour (2)


Two concepts that receive limited attention in the allied health literature are nomothetic and idiographic approaches. I’m discussing these concepts here because when we’re considering pain behaviour, I think we can focus much more on “generic” (nomothetic) concepts than we do idiographic ones – and yet we say we’re about the unique person in front of us.

Firstly, this site offers a good summary of the difference between nomothetic and idiographic – click

Essentially, nomothetic approaches focus on underlying generalities, perhaps traits, and are a solid part of the science of measurement in psychology. Given that much of our allied health measurement practice is based on psychological theories (such as using aggregated or grouped data to search for differences in means between two groups), it’s not surprising that we’ve tended to reach for a self-report measure when we want to understand what a person thinks and does when they’re sore. Think of the Oxford Knee Score, or the Oswestry Disability Index, for examples!

Here’s an item from the Oswestry Disability Index (Fairbank, Couper, Davies et al, 1980)

Section 5 – Sitting
I can sit in any chair as long as I like.
I can sit in my favorite chair as long as I like.
Pain prevents me from sitting for more than 1 hour.
Pain prevents me from sitting for more than ½ hour.
Pain prevents me from sitting for more than 10
minutes.
Pain prevents me from sitting at all.

When a person reads these items, they’re asked to indicate the answer that best fits their experience, but left unanswered are these points: what time of day? what kind of chair? what is the person doing in the chair? who is around that person? why is the person sitting for a long time? what is it about the pain that stops the person from sitting? what do they think is going on?

While the measure itself is based on rigorous methodology, has excellent psychometric properties and so on – it doesn’t investigate important dimensions that we need as clinicians to help this person perhaps alter their sitting tolerance.

Alternative measurement approaches are available: item response theory is one (click) and multi-level modelling is another (click) – but the former still considers latent traits (ie can we identify a general underlying response that underlies all the variability we see in the data), and multi-level modelling also assumes that the respondents still belong to a general population who will demonstrate similarities around the variable in question.

The problem is that people don’t always follow the rules. Here’s an example:

A woman I saw once had low back pain, and was very afraid to bend forward. She was particularly worried about bending down in the shower to wash her lower legs, and when she saw me she avoided putting her handbag on the floor because this would mean she’d need to bend down to pick it up.

To get around this concern, she’d learned to sit on the floor of her shower to wash her lower legs, used pull-on shoes with elastic laces, or court shoes for work, and she’d put socks and pantihose on while sitting on the floor.

At the same time, she was comfortable sitting for around an hour, was able to stand as a customer service person for an eight hour day, and was happy driving – but not happy about reaching into the back of her car (it was a two-door) because it meant she was bending.

For this woman, her score on the Oswestry was below 20% or considered to be “minimal disability” – and yet she was almost turning herself inside out to be able to do what mattered to her.

An idiographic approach to her situations looks a little more deeply at the function of behaviour in context. If we take a look at the amount of spine flexion within her activities of daily living, we can see that sitting on the floor to wash her legs, and to pull shoes and socks on involves just as much movement as if she was bending down. What was different? Well, she was really afraid she’d slip in the shower and land in an undignified heap on the floor, needing to be rescued – while being naked! She said she’d been told that she shouldn’t bend because she had a disc prolapse and she’d seen one of those spine models with the bright red disc bulge and thought this was going to be much worse if she bent over. She was very concerned about appearances as she worked in a customer service role, so developing a way to still get dressed while avoiding bending forward was really important to her – but it took her much longer to do, much more effort to do it, and she remained quite certain that this red jelly would ooze from her disc if she bent forward.

In a behavioural approach to pain management, it’s important to understand the antecedents and consequences of a behaviour, so we can understand what elicits the behaviour, and what consequences occur to maintain it. In this woman’s case, any context where she might need to lean forward – such as making her bed, picking clothes up from the floor, putting shoes and socks on from standing, picking her handbag up, reaching into the back of her car to fetch something – elicited a thought (image) for her of her disc oozing out. Combined with her interpretation of the advice not to bend when she first sought help, her response was one of fear – and one thing we learn very early on as humans is that we should avoid things that generate fear.

The consequences of her avoiding forward flexion were many: her fears weren’t allayed except in the moment, and she remained highly concerned about the disc bulge; she felt relieved in the moment as she avoided doing the movements she thought would harm her. This is negative reinforcement – fear (negative experience) is reduced (withdrawn) because she avoided the movement (relief – I’ve avoided a disaster!). She also avoided doing many things she’d enjoyed – like playing tennis (bending down to pick up a ball? No way!), picking her clothes up from the floor (she had a home helper do this, and do her washing), she’d changed the shoes she wore to avoid having to bend down to tie laces, and she sat on the floor of her shower to avoid having to bend down to wash her legs.

When we started to work on helping her move on with life, it was really important to understand the unique combination of context and function of her strategies for avoiding bending. Just telling her that her discs wouldn’t bulge out wouldn’t alter those powerful images in her mind! We can’t unlearn an association once we’ve learned it. And she’d been practicing this association between an image of disc bulge oozing and bending – and all the activities where we bend, and all the associations she’d made between jelly wobbling (because the disc is basically jelly, right?), and all the other things she knew about jelly – it’s not strong, it can smear over things, it wobbles, it can melt…. My approach was to help her experience doing without the dire consequences, starting from simple and moving to more challenging over time. More on this next week!

As clinicians, our words matter, as do the images and models we have in our clinics. We also must be mindful that the people we try to help will bring their history and the unique associations they’ve made between things they’ve been told, metaphors they’ve heard and the values that matter to them. Respecting all those vitally important and idiosyncratic aspects of being human is integral to a behavioural approach to pain rehabilitation. Let’s not put people into algorithms or groups or boxes, because if we take the time to learn about their uniqueness we can create more powerful – and fun! approaches to helping them live their lives again.

Fairbank J, Couper J, Davies J, et al. The Oswestry low back pain questionnaire.
Physiotherapy 1980;66:271–3.

Is exercise the new snake oil? or just a dirty word?


If you haven’t heard about the health benefits of exercise in the last 10 years or longer, then you’ve probably been a hermit! Exercise can do all these wonderful things – help you lose weight, reduce heart disease, moderate insulin and blood glucose levels, improve your mental health, and yes! reduce pain and disability when you’re sore. (check this list out)

The claims sound suspiciously similar to the claims made by old snake oil merchants – or the amazing White Cross Electric Vibrator!

Well perhaps there’s a little more research supporting claims for exercise… but are those claims being inflated just a little? When it comes to pain, particularly persistent pain, perhaps so…

But before I launch into some of the problems with exercise research, I have another problem with “exercise” – and that’s the word itself.

According to Wikipedia (and no, it’s not an academic reference!!) “Exercise is any bodily activity that enhances or maintains physical fitness and overall health and wellness.” Winter and Fowler (2009) in an interesting paper looking at definitions of exercise, found that “exercise” and “physical activity” are essentially the same and differ only in terms of motivation/intent, finally arriving at this definition: “A potential disruption to homeostasis by muscle activity that is either exclusively or in combination, concentric, isometric or eccentric.” Whew! Glad we’ve got this sorted.

But given the sticky nature of our minds, and that very few of us are inclined to spend hours debating the technical details, the word “exercise” has picked up quite a few other meanings. For me it conjures up images of sweaty, lycra-clad blokes grunting in front of enormous mirrors while they heave on lumps of metal to the pumping rhythm of loud music (and the eyes that follow my every move). It also raises the spectre of school sports where I was inevitably the last person chosen for any sports team, the last to come in after every run, the person who got hit in the face by the ball, who got her thumb smacked by the hockey stick the week before my piano exams…

I’m not alone in my distaste for “exercise”. Qualitative researchers have often investigated how people with pain view exercise: “I get the comments that “It is not dangerous” and that “you are not going to be worse.” I do not believe it is dangerous … but actually it happens that I become worse after .… I know that the pain will increase. And they … talk to me about pain that is not like my pain.” (Karlsson, Gerdle, Takala, Andersson & Larsson, 2018)

Boutevillain, Dupeyron, Rouch, Riuchard & Coudeyre (2017) in another qualitative study, found that people with low back pain firstly identified that pain intensity interfered “any minimal physical activity, standing still in one spot, is torture” (line 1683); “if my back hurts, I don’t do any activity that’s for sure, I am not going to the garden and do some digging, that is out of the question! I have two children, if I am in pain and they want to play, my back hurts and I can’t play with them. My back hurts I can’t do it. It’s not that I don’t want to it is just that I cannot. I am unable to” (line 29). In turn, motivation for exercise was reduced “I don’t have any desire to exercise. A lack of motivation, even apprehension” (line 390); “there needs to be this spark to get motivated, and I just don’t have it” (line 1335). Along with the lack of perceived benefits for some: “Sometimes I try to exercise and then I’m in pain, looking back had I known it would hurt I would probably not have done it” (line 2037) “It can be harmful, I give you an example: I have a colleague with low back problems, similar to mine, and she loves to take step classes, but each time she exercises too much, she is in pain but continues. I think she should stop, it is quite dangerous for her” (line 378).

A systematic review by Slade, Patel, Underwood and Keating (2014) found that “Individuals were more likely to engage within programs that were fun and had variety than ones that were boring, unchallenging, or onerous because they disrupted daily activities.” They added that “Difficulties with exercise adherence and not seeing benefits of exercise were frequently attributed to lack of time and fit into daily life.” Quotes drawn from the studies included in this review show that lack of confidence, negative experiences at the time, and poor “fit” between the exercises selected and individual preferences influence whether exercise was carried out consistently.

At the same time as these negative views, many participants in qualitative studies report that they use “movement” as a key strategy for their daily management. Whether movement looked like “exercise” as prescribed by PTs or trainers is a little less clear – people use the word “exercise” to mean many different things, hence Karlsson and colleagues (2018) combined the term “physical activity and exercise”.

Now one very important point about exercise, and one that’s rarely mentioned, is how little exercise actually reduces pain – and disability. A systematic review of systematic reviews from the Cochrane collaboration found that most studies included people with mild-to-moderate pain (less than 30/100 on a VAS) but the results showed pain reduction of around 10mm on a 0 – 100mm scale. In terms of physical function, significant improvements were identified but these were small to moderate in size.

And let’s not talk about the quality of those studies! Sadly, methodological problems plague studies into exercise, particularly sample size. Most studies are quite small, which can lead to over-estimating the benefits, while biases associated with randomisation, blinding and attrition rate/drop-outs, adherence and adverse effects.

Before anyone starts getting crabby about this blog post, here are my key points (and why I’ve taken this topic on!):

  1. Over-stating the effects of exercise won’t win you friends. It creates an atmosphere where those who don’t obtain pain reduction can feel pretty badly about it. Let’s be honest that effects on pain reduction and disability are not all that wonderful. There are other reasons to move!
  2. Exercise and physical activity can be done in a myriad of wonderful ways, research studies use what’s measurable and controllable – but chasing a puppy at the beach, dancing the salsa, cycling to work, vacuuming the house, three hours of gardening and walking around the shopping mall are all movement opportunities up for grabs. Don’t resort to boring stuff! Get creative (need help with that? Talk to your occupational therapists!).
  3. The reasons for doing exercise are enormously variable. I move because I love the feeling of my body in rhythm with the music, the wrench of those weeds as they get ripped from my garden, the stretch of my stride as I walk across the park, the ridiculousness of my dog hurtling after a ball… And because I am a total fidget and always have been. Exercise might be “corrective”, to increase cardiovascular fitness, because it’s part of someone’s self-concept, to gain confidence for everyday activities, to beat a record or as part of being a good role model. Whatever the reason, tapping into that is more important than the form of the exercise.
  4. Without some carryover into daily life (unless the exercise is intrinsically pleasurable), exercise is a waste of time. So if you’re not enjoying the 3 sets of 10 you’ve been given (or you’ve prescribed to someone), think about how it might translate into everyday life. It might be time to change the narrative about movement away from repetitive, boring exercises “for the good of your heart/diabetes/back” and towards whatever larger, values-based orientation switches the “on” switch for this person. And if you’re the person – find some movement options that you like. Exercise snacks through the day. Jiggles to the music (boogie down). Gardening. Swimming. Flying a kite. Don’t be limited by what is the current fashion for lycra and sweaty people lifting heavy things with that loud music pumping in the background.

Boutevillain, L., Dupeyron, A., Rouch, C., Richard, E., & Coudeyre, E. (2017). Facilitators and barriers to physical activity in people with chronic low back pain: A qualitative study. PLoS One, 12(7), e0179826. doi: 10.1371/journal.pone.0179826

Edward M. Winter & Neil Fowler (2009) Exercise defined and quantified
according to the Système International d’Unités, Journal of Sports Sciences, 27:5, 447-460, DOI: 10.1080/02640410802658461

Geneen, L. J., Moore, R. A., Clarke, C., Martin, D., Colvin, L. A., & Smith, B. H. (2017). Physical activity and exercise for chronic pain in adults: an overview of Cochrane Reviews. Cochrane Database Syst Rev, 4, CD011279. doi: 10.1002/14651858.CD011279.pub3

Karlsson, L., Gerdle, B., Takala, E. P., Andersson, G., & Larsson, B. (2018). Experiences and attitudes about physical activity and exercise in patients with chronic pain: a qualitative interview study. J Pain Res, 11, 133-144. doi: 10.2147/JPR.S149826

Big questions in pain rehabilitation


The last 30 years or more of pain research and management have been exciting for us pain nerds. We’ve learned so much about processes involved in nociception, about the psychology of our responses to nociceptive input, about treatments (that often don’t work terribly well), and we’ve discovered that we (mainly) don’t know what we don’t know. There are some big questions though, that have yet to be answered – and don’t yet share the limelight that neurobiological processes seem to hog. Here are a few of my big questions.

  1. How do we alter public health policy to move from an acute biomedical model to the broader and more adequate biopsychosocial understanding of illness, as opposed to disease? To expand on this – our current healthcare funding targets procedures, actions taken against “diseases” like an osteoarthritic knee that can be whipped out and replaced with a shiny new one. The person living with that knee doesn’t really feature because what matters is getting rid of a waiting list of people who want new knees. Government funding is allocated to ensure X number of knees are replaced with the unquestioned belief that this is the best way to deal with osteoarthritic knees. Rehabilitation, or the process of helping a person deal with the effect of a disease on their experience (ie illness), is, by comparison, poorly funded, and the outcomes rather more uncertain and complex. It’s hard to count outcomes that include quality of life and participation in the community. Health managers and policy funders find it slippery and complicated – and because a biomedical model is so much easier to understand, and so much simpler to measure, and those awkward “people” factors don’t need to be accommodated – funding seems to be allocated to procedures rather than outcomes. (see Wade & Halligan (2017) for a much more eloquent discussion of these issues).
  2. When, and how, do we tell someone their pain may be persistent? I’ve scoured the research databases several times over the years, to understand what research has been conducted in the crucial art of communicating to a patient that their pain is either not going to go away, or that it will take a long time before it does. While there is a little research into “giving bad news” this is primarily in the context of telling someone they have a “life-limiting disease”, ie they’re going to die. But nothing, not a single thing, on when we should advise someone, what we should say, what we should do to best help someone deal with the existential impact this kind of message has. In fact, when I’ve raised this question before, people on social media have advised me that if we tell someone their pain is persistent we’re reducing the possibility of recovery – developing an expectation in the person that their pain won’t go, and this will be a self-fulfilling prophecy. I’m not entirely sure that this is true: that suggests our minds can perpetuate pain, when my understanding is that our beliefs and expectations might influence behaviour rather more. And, putting myself in the shoes of many of the people I’ve seen who live with persistent pain, what is it like to be repeatedly told “we have the answer for you, if you’ll just do…[fill in the gaps]” only to find that it has not helped. How demoralising is that? How heartbreaking? And until we have a treatment with a 100% success rate, we will always have to acknowledge that some people will need to live with their pain for the rest of their years. It’s like a dirty little secret: don’t tell people or — and to be honest, I do not know what might happen! (I couldn’t locate a single paper on how to communicate a chronic pain diagnosis – if anyone has found something, please let me know!)
  3. How do we handle those clinicians who firmly believe that psychosocial factors are either irrelevant, or are equivalent to psychopathology? How do we help those people understand that describing someone’s cognitive approach to their situation as “catastrophising” does not negate or trivialise their distress? Neither does it mean we are “judging” the person. It simply recognises an association between one way of interpreting an experience – and outcomes that are not positive for the person. Clinicians who work with people who tend to “think the worst” do their best to understand how someone has developed this understanding of their situation, then offer new information, skills and support to help that person feel more confident and less hopeless. A clinician who simply offers sympathy may feel heroic and kind, but might be cementing disability and distress into place. And those who believe that the only factors that need addressing are depression or anxiety – and that’s not their scope of practice – probably could do with some more education about how humans interact, and the “social” aspects of the biopsychosocial approach.
  4. How do we appraise treatments that might help in the short term, but have unintended consequences? Particularly unintended consequences that occur over time and in areas unrelated to the original treatment. Here’s an example: when someone is offered an injection procedure that reduces pain, yes pain reduces. Yay! This might provide a “window” of opportunity for rehabilitation, return to work, and return to “normal”. And certainly this seems to occur. BUT what happens as the pain returns? If we offer a further procedure, what is the psychological effect of relief on future treatment seeking? Having worked in a pain management service where three-monthly injection procedures were offered, I can say that a core group of people will phone up as soon as their pain returns, and ask for another procedure. If it’s nearly 3 months since the last one, the person gets booked in. Another procedure, another few months go by. This time, it’s 2 months when the person begins to notice pain. Another phone call to ask for another procedure and the person gets booked in – 2 1/2 months since the previous one. Yay! Pain reduces, person goes on… this time six weeks after the procedure the person recognises that the pain is coming back…. phones up and asks for a procedure. This time the person is told “no, you need to wait”. They’re distressed. They’re anxiously waiting, waiting. They see their GP, maybe get some medications. They begin sleeping poorly. Eventually they get another procedure – and oh! the relief! But the experience of distress then relief from a procedure is an incredible learning opportunity. Guess how long before the person comes back for another procedure? And while they’re waiting for it, they’re distressed, not sleeping, disabled – and not ready to “do rehab” because they KNOW there’s a treatment that will “take it all away”. The problems are many, but two strike me: (1) repeated procedures mean those patients can’t be discharged, they remain patients as long as they continue to get the treatments and this eventually takes up so much time and space that fewer new patients can be accepted, and (2) treatments like cortisone injections can only be offered three or so times. What has the person been trained to do when they experience pain? That’s right – seek another procedure. And when this isn’t available, the person has learned to feel anxious about their pain, and to believe there’s little they can do about it themselves. I think this is cruel.
  5. Finally, how do we move from a clinical model where clinicians believe they have the answer, to a model where we appreciate that the person with pain is the one doing the work in all the hours they’re not with us? Maybe the way we do our treatments might shift from doing things to a person, or telling the person what to do (and expecting that they’ll do it just because we said) to being a coach, a facilitator, a cheerleader, a navigator – someone who is willing to work with rather than do to. And when will our funding models and service delivery models shift from valuing procedures (and therefore paying these people more) to valuing interactions (and therefore paying these people more) – and move away from trying to substitute person-to-person interaction with technology? Our communication capabilities need to be highly refined, highly skilled, incredibly nuanced and selective and flexible, and yet the skill to wield a technique (read – scalpel, manipulation, needle, bathboard – the “what” we do) is valued far more, and trained far more intensively than our communication skills. Unless, of course, we’re psychologists. But we use effective communication all the time – and we need to get better at it so we can more effectively help the person in front of us, who will ultimately have a choice about what they do. When will we be comfortable with recognising just how crucial the so-called “soft skills” of empathy, reflective listening, goal-setting, encouraging, challenging, responding to distress – when will these be funded adequately and when will we realise we ALL use these, not just psychologists.

Big questions, uncertain and complex answers. Can we have meaningful conversations about these without research? And yet these questions are hard to study. But isn’t it time to?

Wade, D. T., & Halligan, P. W. (2017). The biopsychosocial model of illness: a model whose time has come. Clinical Rehabilitation, 31(8), 995–1004. https://doi.org/10.1177/0269215517709890

On the problem of coping


Coping. Lots of meanings, lots of negative connotations, used widely by health professionals, rejected by others (why would you need coping skills if you can get rid of your pain?).

I’ll bet one of the problems with coping is that we don’t really know what we’re defining. Is coping the result of dealing with something? Or is it the process of dealing with something? Or is it the range of strategies used when dealing with something? What if, after having dealt with the ‘something’ that shook our world, the world doesn’t go back to the way it was? What if ‘coping’ becomes a way of living?

The reason this topic came up for me is having just written a review for Paincloud on activity patterns (Cane, Nielson & Mazmanian, 2018), I got to thinking about the way we conceptualise ‘problems’ in life.  It’s like we imagine that life is going along its merry way, then all of a sudden and out of the blue – WHAM! An event happens to stop us in our tracks and we have to deal with it.

But let’s step back for a minute: how many of us have a well-ordered, bimbling existence where life is going along without any hiccoughs?!

Back to coping. The concept of coping is defined by Lazarus and Folkman (1980) as “the cognitive and behavioral efforts made to master, tolerate, or reduce external and internal demands and conflicts among them.” It’s identified as a transactional process and one that occurs within a context where the person has both resources and constraints, and a direction in which he or she wants to go.

By contrast, if we look at the research into coping in people with persistent pain, most of the attention is on the “what the person does” and the resources he or she has (see for example Rosenstiel & Keefe, 1983; Jensen, Turner, Romano & Karoly, 1991; Snow-Turkey, Norris & Tan, 1996; and much more recently, measures of coping by Sleijswer-Koehorst, Bijker, Cuijpers, Scholten-Peeters & Coppieters, in press). There are some studies exploring the goals set by the person (Schmitz, Saile & Nilges, 1996), but few studies examine the context in which the person is coping – nor what happens once the coping efforts are successful.

Measuring coping falls into three main buckets: the repertoire (how many strategies do you have?); the variation (which ones do you use and do they match the demands?); and the fitness approach (the choice of strategy depends on the way a person appraises the situation) (Kato, 2012). Out of these three, Kato chose to develop a measure of coping flexibility. Coping flexibility refers to “the ability to discontinue an ineffective coping strategy, and produce and implement an alternative coping strategy”. The Coping Flexibility Scale aims to measure this ability, based on the idea that by appraising the situation, implementing a strategy, then appraising the effectiveness of that strategy and applying a new one, the person is more effective at dealing with the challenge.

One of the most popular measures of coping for pain is the 14-item Coping Strategies Questionnaire (Riddle & Jensen, 2013). It suggests different ways of coping, some of which are seen as helpful, while others are not. Oddly enough, and why I started writing this blog, it doesn’t include the way we go about daily activities – activity patterns. In the study by Cane, Nielson & Maxmanian (2018), two main forms of activity pattern were found: avoidant-pacing, and  overdoing (as measured by the Patterns of Activity Measure – Pain). The avoidant-pacing group used pacing for daily activity management, but did so with the intention of avoiding flare-ups. The overdoing group just did a lot of activity. After treatment, some people moved group – from the two original groups, two more emerged: avoidant-pacing, pacing, mixed and overdoing. The pacing group basically did what everyone says is a great way to manage pain: picking out the right level of activity and sticking with it, using a quote-based approach. The definition used in this study was “… preplanned strategy that involved breaking activities into smaller parts, alternating periods of activity and rest (or an alternate activity), and using predetermined time intervals (or quotas) to establish when to stop an activity. The description of activity pacing provided to patients identified the goal or function of activity pacing as facilitating the completion of activities and ultimately increasing overall activity and functioning.”

As usual there are vulnerabilities in the way this study was conducted, and the main one for me is the follow-up period is non-existent. The reason I worry about this is that in my daily life, as I’m sure happens in many of yours, my pattern of activity varies wildly from week to week. Some weeks, like the weeks just before I headed to Sunderland for Paincloud, and the weeks just after I got back, were incredibly busy. I pushed myself to get things done because there were a heap of deadlines! This week I plan to have some down-time – this afternoon, in fact, because I want to play with some silversmithing.

And it occurred to me that we expect such a lot from the people we work with who live with pain. We ask all sorts of intrusive questions about daily life and we expect people to be able to recall what they did, why they did it, and to make changes and be consistent about these until we’re satisfied they’re “coping”.

But what if coping is actually the way we live our lives? What if coping involves all the myriad self-evaluative activities we all do – like, how hungry, tired, irritable, frustrated, rushed, achey, restless, enthusiastic, apologetic we feel – and endlessly and constantly adjusting the actions and behaviours we do so we can do what, for a moment or two, we think is The Most Important thing for now.

Life is a constant flowing forward. It’s a stream, an avalanche, a train going one way only. We can’t stop the world to get off. And once we’ve “coped” with something, life doesn’t return to “normal” because we’re different. Maybe our priorities change, or our circumstances have, or we have a new insight into what we want, or we work out the goal we had is more important than we thought. What if we are expecting the people who live with pain to do something we’re not even capable of?

I suppose part of my musing is related to mindfulness. Mindfulness involves continually returning to what I want to pay attention to, and doing so without judgement, and also observing without judgement. But it always involves coming back to what I intend to attend to. On and on and on. And the lovely thing about it is that it’s endlessly gentle and forgiving. Let go of the things I forgot to do, or the rushing towards what needs doing. I wonder what would happen if we encouraged people to be mindful for brief moments throughout the day all day long. Would that encourage coping flexibility? Would it encourage using a broader repertoire of ways of dealing with things? Would it help people to be more aware of everyday choosing and prioritising and managing actions to meet what’s valued in life?

To summarise: currently coping is measured using a “catalogue” of actions, often out of the context of daily decision-making and activity management. Activity management can vary from day to day, hour to hour, month to month. Being flexible with how we go about life seems, at least to me, to depend on my being aware of what’s important to me, what my energy is like, and the context in which I life. How well do we measure these constructs in pain management?

Cane, D., Nielson, W. R., & Mazmanian, D. (2018). Patterns of pain-related activity: replicability, treatment-related changes, and relationship to functioning. Pain, 159(12), 2522-2529.

Folkman, S., & Lazarus, R. S. (1980). An Analysis of Coping in a Middle-Aged Community Sample. Journal of Health and Social Behavior, 21(3), 219-239. doi:10.2307/2136617

Jensen, M. P., Turner, J. A., Romano, J. M., & Karoly, P. (1991). Coping with chronic pain: A critical review of the literature. Pain, 47(3), 249-283. doi:http://dx.doi.org/10.1016/0304-3959%2891%2990216-K

Kato, T. (2012). Development of the Coping Flexibility Scale: Evidence for the coping flexibility hypothesis. Journal of counseling psychology, 59(2), 262-273.

Riddle, D.L &  Jensen, M.P. (2013). Construct and criterion-based validity of brief pain coping scales in persons with chronic knee osteoarthritis pain. Pain Medicine 14(2):265-275. doi:10.1111/pmc.12007

Rosenstiel, A. K., & Keefe, F. J. (1983). The use of coping strategies in chronic low back pain patients: relationship to patient characteristics and current adjustment. Pain, 17(1), 33-44.

Schmitz, U., Saile, H., & Nilges, P. (1996). Coping with chronic pain: flexible goal adjustment as an interactive buffer against pain-related distress. Pain, 67(1), 41-51.

Sleijser-Koehorst, M. L. S., Bijker, L., Cuijpers, p., Scholten-Peeters, G. G. M., & Coppieters, M. Preferred self-administered questionnaires to assess fear of movement, coping, self-efficacy and catastrophizing in patients with musculoskeletal pain – A modified Delphi study. Pain. in press

Snow-Turek, A. L., Norris, M. P., & Tan, G. (1996). Active and passive coping strategies in chronic pain patients. Pain, 64(3), 455-462. doi:10.1016/0304-3959(95)00190-5

The confidence that you’ll succeed if you try…


Self efficacy. It’s a word bandied about a lot in pain management, and for a group of clinicians in NZ, it’s been a shock to find out that – oh no! They’re not supporting self efficacy with their patients very much! It means “confidence that if I do this under these conditions, I’ll be successful”.

Self efficacy is part of Bandura’s social learning theory (click here for the Wikipedia entry) where he proposed that much of psychological treatment is driven by a common underlying mechanism: to create and strengthen expectations of personal effectiveness. Bandura recognised that we don’t always have to personally experiment through trial and error in order to learn. Self efficacy expectations were thought to develop from personal experience (let me do, and I’ll learn how); watching other people try (show me, and I’ll see if you succeed, then I’ll copy you); verbal persuasion that aims to convince that you have the capabilities to manage successfully (encourage me, let me know I can, and I’ll try); and how physiologically aroused or alert you are (if I feel confident inside, I’ll try but if I feel anxious or stressed I’m less inclined to) (Bandura, 1977).

Bandura and colleagues established that “different treatment approaches alter expectations of personal efficacy, and the more dependable the source of efficacy information, the greater are the changes in self-efficacy.” (Bandura & Adams, 1977, p. 288). The conclusions drawn from this mean that treatments where people DO and succeed are more effective at enhancing their belief in self efficacy, while watching others, or being told how to do something are far weaker at building this effect.

Bandura began working on this theory while pondering how psychological treatments, particularly for systematic desensitisation or graded exposure, generated their effects. Systematic desensitisation aimed to reduce arousal levels and thus avoidance while being in a relaxed state – therefore the person is exposed to increasingly “aversive” stimuli (stimuli you want to avoid) while remaining calm and relaxed. Bandura thought that there were other factors involved in avoidance behaviour, developing his theory that expectations of negative consequences alone can generate fear and defensive behaviour and that this isn’t necessarily reflected in autonomic arousal and actions. Bandura hypothesised that reducing physiological arousal improved performance not by eliminating a drive to escape – but instead by increasing the confidence that the person can successfully manage the situation.

For parents, the idea that if you believe you can do what you set out to do, is embodied in the little book “The Little Engine That Could” (Piper, 1930/1989). Remember? The little engine that couldn’t because all the bigger engines said so, but then tried and tried and believed he could – and he did!

So, what does this have to do with pain management?

Let’s paint a scenario. Allan comes to see a hands-on therapist because he has a sore back. He believes that hands-on therapy is the thing, because others have said it’s really good. He goes, gets his treatment and wow! Things improve! The next time he has a sore back (because, you know, it almost always comes back) what does he do? Well, on the basis of his past experience, he heads to his hands-on therapist, because he’s confident this will help his pain. The problem is, his therapist has moved town. He’s a bit stuck now because in his town there are not many therapists doing this particular kind of treatment – what does he do? He doesn’t believe that anyone else can help, and he has no belief that he can manage by himself. He has little self efficacy for managing his own back pain.

Self efficacy is not about whether a person can do certain movements, it’s about believing that the person can organise skills to achieve goals within a changing context – not just what I will do, under duress, but what I can do, what I’m capable of doing, and what I say I’ll probably do.

Self efficacy is not a belief that a specific behaviour will lead to a certain outcome in a certain situation, it’s the belief that I can perform that behaviour to produce the outcome.

So, self efficacy isn’t a generalised attitude – it’s a specific belief about certain actions, certain outcomes in certain situations. It’s not a personality trait like hardiness, or resilience, or general confidence or self-esteem, it’s about being confident that I can generate a solution to a problem in a particular part of my life.

The times when we’re least confident are often when we’re facing a new experience, or we’ve had a bad experience previously. Particularly if we’ve seen other people fail at the same thing, or succeed but do so with much fear and loathing. In the case of pain, there are ample opportunities to have a bad experience in the past, and to learn from other people around us that – oooh back pain is something to be afraid of, and you can’t manage it alone – you need to get help from someone else. Consequently, many people have very low self efficacy for successfully dealing with a bout of low back pain.

And health professionals: we can foster this.

How? By implying that success is due to what we do, rather than being a natural process of recovery. By suggesting it’s something about our “magic hands” or pills, or injections or surgery or special exercises, or “using the core correctly”. In doing so, we’re generating a belief that the person cannot manage alone. That it’s not what the person does, but the magic hands, pills, injections, surgery, special exercises or using the core…

Damush, Kroenke, Bair, Wu, Tu, Krebs and Poleshuck (2016) found that self management approaches to pain increase self efficacy, self management actions, and reduced pain intensity and depression in a group of community patients with chronic musculoskeletal pain and depression. A typically tough group to work with because confidence to succeed at anything is pretty low in depression. Self management aims to ensure the credit for recovery lies with the person doing things that help – creating and supporting a belief that the person has the capability to successfully manage their situation. The techniques? Simple strengthening and stretching exercises, progressive muscle relaxation, and visualisation, in a group setting. Strategies that typically don’t need technology, but do provide support. Information about the natural history of recovery was included – so people were given realistic and optimistic information about their recovery, whether it meant pain reduction, or not. The usual goal setting, problem-solving, and positive self talk were encouraged, and people set goals each week to achieve – maybe based on something from the session, or something the person wanted to do for themselves.

This is not a high-tech approach. This is simple, straightforward pain management as it has been done for years (right back as far as the mid-1970’s and Sternberg!). And through it, these people become increasingly confident that they could successfully manage their own mood and pain independently. As a business model it’s probably not the best for repeat business – but oh how good for those participants who could go away and live their lives without having to think of themselves as patients.

More on self efficacy in the next couple of weeks – we can help people to become confident that they can succeed at managing their pain if it should happen again.

 

Bandura, A. (1977). Self-efficacy: Toward a unifying theory of behavioral change. Psychological Review,  84, 191-215.

Bandura, A., & Adams, N. E. (1977). Analysis of self-efficacy theory of behavioral change. Cognitive Therapy and Research, 1(4), 287-310.

Damush, T., Kroenke, K., Bair, M., Wu, J., Tu, W., Krebs, E., & Poleshuck, E. (2016). Pain self‐management training increases self‐efficacy, self‐management behaviours and pain and depression outcomes. European Journal of Pain, 20(7), 1070-1078.

Maddux, J. E. (2016). Self-efficacy Interpersonal and intrapersonal expectancies (pp. 55-60): Routledge.