Learning ACT (acceptance and commitment therapy)

Around 2001 I read what I believe is the first randomised controlled trial of ACT for people living with chronic pain (McCracken, 1998). I quickly dived into this ‘new’ therapy – it appealed to me because it resonated with my own experiences with psychological therapies for depression, and in the way I had learned to live alongside my own pain. For those who don’t know, I developed chronic pain around the age of 22ish (dates are hard to remember!) and after seeing a pain specialist was given those fateful words ‘I’m sorry, there’s nothing we can do from a medical perspective.’

Why did ACT resonate so well? Because I’d tried to do the things that CBT offered. All the ‘maladaptive thoughts’ (stinkin’ thinkin’), the reframing (no, life doesn’t suck completely, it just sucks here, and here…), the behavioural activation (just keep on doing, even though it’s not rewarding) – all the things I was supposed to do to ‘fix’ my depression and my pain, but actually made me focus more on my thoughts, and more on the reality of being a single mother with two small children working full-time, studying part-time, and yes, feeling overwhelmed and at times pretty desperate.

ACT was different. ACT focused on noticing first. Noticing what was here and now. And when I was being present in the moment I could see my children as wonderful, quirky, loving kids (who also made a horrendous mess that I could never keep on top of!). I could see the colours in the flowers and trees in the nearby Botanic Gardens. I could notice my left earlobe (it doesn’t get sore – neither does my belly button!).

Learning ACT was not easy. ACT is a slippery therapy for anyone who wants a step-by-step protocol. There are common parts to ACT as an approach, like creating a sense of ‘these things don’t work – but it’s not for want of trying, it’s because humans don’t work this way’ (because the harder we struggle to control a thought or a feeling, the more it sticks to us), like being present and noticing, choosing actions that align with what matters: these were relatively familiar to me because of my occupational therapy background. Occupational therapists often start by asking people about what they want and need to do, then begin by setting actions that help the person do those things, but ACT can start anywhere on that darned hexaflex.

How might I go about learning ACT today? Because I know me, I would begin by looking at the end. What’s the end goal with ACT? It’s about being able to continue doing what matters (making our lives count in the ways we want them to), despite what life throws at us. I take this to mean that although the form or outer expression of what matters to us might change over our lives, the intent or values underpinning those actions is retained. And sometimes the values might change a little as we focus on one for a time, and others step back.

The thing is, changing how we do things is hard! I’ve often said to people with pain that I can teach the skills of pacing, for example, in an hour. What’s difficult is dealing with what our minds say, the reactions from other people, our own feelings about making changes and dealing with these other reactions, and the inner sense of wrongness that can come up – like ‘what kind of a person stops half-way through a task just to go take a break?’ And this is why ‘education’ for pain has to go beyond telling someone what to do.

As a total nerd, I like to know the theory or the organising structure supporting a therapy. ACT is based on solid science and I don’t just mean relational frame theory! ACT is a cognitive behavioural therapy, with the major distinction between ACT and CBT being how language is viewed. This means knowing about behaviour change from a Skinnerian perspective. It really does help to understand classical and operant conditioning. It moves us away from working hard to avoid things we don’t like, and towards things that are rewarding to us. The influence of moving in the direction of things we want has a different flavour from avoiding things we don’t want.

For example, if I work hard to avoid feeling my pain, I'll notice my pain whenever I do anything. This makes pain so much more present to me! If, instead, I want to enjoy the delights of what my body can do because I love to move to music, there are so many ways I can do this! I can tap my toes and my fingers in time to the music. I can hum along. I can chair dance. I can sit and internally dance to it. I can stand up and do a wiggle. I can even get up and dance! I can walk in time to the music, I can choose the tempo of the music I move to... the world opens up to me. 

I do ACT as I understand it. I try to use ‘doing’ as the vehicle for working through the various processes because how we do anything is how we do everything. I try not to just talk about ACT. ACT is a doing therapy where, by paying attention to what happens in the moment and bypassing the commentary our minds make (and the stories we hold onto about who we are), the effects of what we do become the guidance we need.

For example, if I feel better in my body by doing chunks of activity then doing a stretch or a walk or a dance or a body scan, my mind can leap in and tell me I'm being lazy, ineffective, sloppy, and never get anything done. Following the guidance of my mind would lead me away from relishing the lightness and reduced pain I get from chunking my day into bits. If I'm willing to notice how my mind likes to nag AND to notice how wonderful my body feels, guess which one is a better guide? Especially if what really matters to me is how I can be calm at the end of the day when I spend time with my partner! By noticing how my body is, and letting my mind do its thing without buying into the content, I'm much more likely to keep doing the pacing. 

There are many courses teaching ACT, and loads of freely accessible material on ACT throughout the interwebs. That’s due in large part to the ethos of ACT and those researching and using ACT-aligned approaches. Unlike CBT which can be tightly regulated, particularly in the USA, ACT is far more generous and open. Anyone can use ACT, it’s intended to view people as people, not bundles of psychopathology. I like this, especially in pain where so many people have already been given unhelpful names and treated with disdain and stigma. It won’t breach your scope of practice because it is about humans being practical about how our minds work, and what trips us up when we hit a life snag. Life snags are everywhere, and being human is, well, who we are!

The challenge for therapists not familiar with psychological approaches is to learn ACT from the perspective of your profession. If you’re a physiotherapist, ACT is done differently from when ACT is used by an occupational therapist or a social worker or a psychologist. We might deal with the same stuff, but our entry point to ACT is often different from a psychologist. I like to begin with actions aligned with values and watch what happens as people begin to do the things. It’s once people begin doing that our minds, beliefs about who we are, our desire not to feel uncomfortable, our memories and expectations all begin to wreak havoc on being guided by what actually happens in real time.

This is why I’m preparing my own online ACT course for therapists who work with people living with pain. The solid foundations of ACT will be there – but we’ll begin by doing the doing. ACT is a different way of being with people, and the best person to experiment with is —– yep, yourself. Keep watching for ACT for pain therapists, coming soon!

BTW this study by Lai et al., (2023) shows 33 ACT RCTs (bearing in mind my reservations about RCTs), with 2293 participants, showing (as usual) small to medium effect sizes for physical function and pain intensity at follow-up; and on depression, anxiety and improved quality of life. Interestingly, people with difficult-to-treat pains like chronic headache and fibromyalgia showed greater benefit than those wioth nonspecific or mixed pain, and again as usual, results were smaller over time. ACT is helpful – so let’s do it!

Lai, L., Liu, Y., McCracken, L. M., Li, Y., & Ren, Z. (2023). The efficacy of acceptance and commitment therapy for chronic pain: A three-level meta-analysis and a trial sequential analysis of randomized controlled trials. Behav Res Ther, 165, 104308. https://doi.org/10.1016/j.brat.2023.104308

McCracken, L. M. (1998). Learning to live with the pain: acceptance of pain predicts adjustment in persons with chronic pain. Pain, 74(1), 21-27. https://doi.org/10.1016/s0304-3959(97)00146-2

When life happens….

Most of my writing comes from mulling over recent events as played out either in social media or research findings. Today’s post is a little different. It’s no secret that I live with persistent pain, fibromyalgia to be exact. I’ve found that being open about my diagnosis, and that all the strategies I advise to others are also strategies I employ, and that none of them are ‘the secret.’

I posted recently about a struggle I have dealing with reviewer’s comments on papers I submit for publication. Now peer review is a thing, I think it’s a good thing though somewhat exploitative (I’m also a reviewer – we do it for free, we do it as part of our academic ‘service to the research community’ but we do it for large publication companies that receive articles for free from researchers who utterly rely on getting published for their grant applications, careers…). My struggle isn’t with unfair or unkind reviewers because to be fair I’ve had really good reviewer comments.

My trouble is associated with two peculiarities of mine. I get horribly, horribly anxious when I read reviewer comments, and largely I’ve learned to deal with that. I understand that the aim is to get the best version of what I’ve written out there into print, and as I’ve said, reviewers have generally been fair. Uninformed in some cases (no, Classical grounded theory is NOT the same as Strauss & Corbin, or Charmaz! CGT holds different philosophical assumptions, and in qualitative research, philosophy of science matters), but readily rebutted. Nevertheless I feel highly anxious and worry that I won’t be able to address the reviewer’s concerns adequately. That old imposter syndrome is alive and well in this woman!

The second peculiarity is one I’ve only just got a handle on, though the effects have been with me forever. You see, about 12 months ago I was diagnosed ADHD.

Yes. At 58 years old, I got a new diagnosis that helps explain some of the things that I’ve had trouble with my whole life.

Time for a quick segue. Diagnoses are an odd phenomenon, particularly when it comes to intangible concepts like emotions and cognitions. Unlike acquired diseases, there don’t seem to be readily identified biomarkers – because, of course, unless it’s viewable it’s not real (yeah, right). In other words, we have to rely on what a person says and does to determine whether they have the right to a certain label. And labels in ‘mental health’ are notoriously unreliable, shift with changing political and societal norms (how long ago was homosexuality removed from being thought a mental illness? 1973…). People like Steven Hayes have argued that the entire notion of diagnostic criteria in DSMV is flawed (Hayes, Sanford & Feeney, 2015). Diagnoses for most mental health problems have not led to effective treatments that target the purported mechanisms involved (Hayes, et al., 2022). What diagnoses may do is allow social permission to receive certain considerations. For example, someone with an accident-related pain problem in New Zealand will be able to access free therapy from a multidisciplinary team, while someone with a non-accident-related pain problem such as hand osteoarthritis, or migraine, will have to rely on the scant publicly funded chronic pain services. Diagnoses matter, as anyone in NZ who has been told their pain is ‘not injury-related’ will tell you.

ADHD is not, let’s be quite clear, only reserved for children (particularly boys) with a tendency to leap around a classroom making noise and generally being disruptive. ADHD is a neurotype experienced by around 2.5 – 5% of adults (Young, et al., 2020) and typically considered under-diagnosed in girls and women precisely because of the stereotypical understanding of ADHD. It’s at least partly heritable (some estimates are about 70 – 80%, with 12 independent genomic loci that increase susceptibility to ADHD), generally responds well to stimulant medication (though this does in NO WAY ameliorate all the problems associated with ADHD), and can be found in people from all walks of life and all levels of intelligence.

ADHD describes lifelong patterns of difficulty regulating attention, emotions, and behaviour. There are three major groups of problem: inattention, hyperactivity, and impulsivity (Australian evidence-based clinical practice guideline, 2022). Different people experience different problems associated with ADHD. Mine include atrocious organisational skills, but great responsiveness in high pressure situations; a terrible short-term memory but great visual recall; lousy object constancy (if I can’t see it, it just doesn’t exist); overwhelm in busy sensory environments but exceptional capacity for laser-focused attention on what interests me – to the exclusion of remembering to eat, drink or pee.

People with ADHD often feel out of kilter with others in the world. We might get told we’re weird, or lack social skills, or we ‘have potential’ if only we’d learn how to harness it. Women in particular are often treated for depression and anxiety without anyone asking how it is we’ve developed these issues. We’re great on social club quiz evenings because we have immense recall for utter trivia, but we routinely have to return to the house four or more times to pick up our phone, lock the doors, fetch our glasses and our handbag.

How does it affect me and my writing?

Well, ADHD means I’m fascinated by novelty. Dopamine is the ‘molecule of more’ – and drives me to dive down rabbit holes to find stuff out. Once I’ve found something out, I like to cement my knowledge by writing or talking about it. It makes me a good teacher though sometimes I info-dump way more than anyone else wants to know! Being novelty-driven also means I write fast, as I speak, and once I’ve written something – it’s done. That novelty buzz evaporates and it’s like a switch in my mind flicks off and boom! I’m on to the next thing.

When I get reviewer comments on my work, a big part of me thinks “oh but didn’t you get it? I’ve written it, can’t you see?” because I’ve forgotten about the background information I hold that the reader probably doesn’t also hold. Another big part of me thinks “but I organised this to tell a story this way, now I don’t know how to change that” because I find holding on to multiple points really difficult, and structuring a cogent response to reviewers means not only remembering what I wanted to say, but also what the reviewers found – and my response to their comments. That’s a lot of cognitive shuffling, to say the least, especially when one of the problems my ADHD brings is holding onto information in memory then selecting the right response at the right time.

Once I start thinking about these multiple perspectives and which bit is most important I begin to get anxious. My anxiety is about choosing a response that says what I want to say and aligns with the reviewers ideas. What if I get it wrong? What if I can’t sift through the various points and decide what needs to change? All the overload hits my poor mind, and I freeze.

Part of this is because I was diagnosed later in life and I’ve experienced a lot, and I mean a LOT, of negative feedback about focusing on the wrong things. Doing it wrong. Being wrong. Working really hard on something that ultimately didn’t count for much where it matters. And academic life is full of negative, even brutal, feedback. I mean, we debate ideas with vigour! A good part of me thrives on intellectual debate in the moment. In the quiet of a late night… not so much. It’s overwhelming.

Another part is that ADHD means I see relationships between things that might not occur to others. It’s a big quirk of ADHD – as a group of individuals, we’re often ‘the creatives’, seeing connections and solving unique problems in ways that aren’t logical. That’s because our minds see connections quickly, and linear logic is not often our friend because… well it’s boring and linear. Free association is where my mind lives! Hunches, intuition, improvising, mix’n’match… Precisely because of this, when a new piece of information hits, it disrupts what I’ve already assembled, and for me it’s not just about altering this one part, that single change ripples throughout the whole network of associations I’ve made. Where oh where do I start?

As an older woman learning that yes, I do in fact have an explanation for the difficulties I’ve faced throughout my whole life, has meant an enormous shift in my own self-compassion. When I consider what I’ve achieved despite my ADHD, as a single parent with two ADHD children (undiagnosed until 2 years ago), while working full time, studying part-time, and generally maintaining a good long-term relationship and long-term employment, I’m a little astonished. And at the same time… afraid that really, I am ‘not achieving my potential’, ‘could try harder’, ‘has the capability if she’d only be more consistent.’

Why reveal this in a blog about pain self management?

A couple of reasons. Firstly, it’s my blog, so I can write what I want!! And writing a blog for as long as I have demonstrates that yes, I can certainly be consistent in some circumstances. The context of my consistency matters, because it’s something that I can use to support my neurotype, my ADHD traits.

Secondly, because while I’m now diagnosed and treated and experiencing the incredible benefits of a successful therapy (what? my mind can be quiet? I can focus? I can make choices instead of reacting? OMG it’s awesome!), I still need to deal with both my quirky executive function AND the experiences of a lifetime of dealing with it and the responses from the world around me. Nearly 59 years of consistently stuffing things up, double-booking myself, forgetting details, getting overwhelmed and stuck, not being able to sort my way through a complex situation, being criticised for exactly the sorts of things my brain does well. Things like seeing connections between things that appear to be left-field, but make perfect sense to me AND could be just the sorts of innovations we need to progress pain management beyond the recipes and algorithms that fail to understand that people are individuals.

You see, the diagnosis of ADHD gives me a label, and access to more knowledge about people with ADHD as a group. What it doesn’t do is give anyone a good idea of the unique way ADHD plays out in me.

And BTW, people with ADHD are disproportionately more likely to experienced chronic pain, so if you’re a clinician trying to help someone with chronic pain, and that person has ADHD – there’s a good reason they didn’t do their home exercise programme, or apply their pacing strategies. These both require effective executive functioning. And if that person you’re trying to help is a woman who is also ADHD and attempting to run a household (all that planning, organising, maintaining – the cognitive labour of keeping a household running) – heaven help you! That woman could do with some compassion, simplification and support, rather than judgement and shaming. She’s already had enough of that. True story.

ADHD Guideline Development Group. Australian evidence-based clinical practice guideline for Attention Deficit Hyperactivity. Melbourne: Australian ADHD Professionals Association; 2022.

Hayes, S. C., Ciarrochi, J., Hofmann, S. G., Chin, F., & Sahdra, B. (2022). Evolving an idionomic approach to processes of change: Towards a unified personalized science of human improvement. Behaviour Research and Therapy, 156, 104155. https://doi.org/10.1016/j.brat.2022.104155

Hayes, S. C., Sanford, B. T., & Feeney, T. K. (2015). Using the functional and contextual approach of modern evolution science to direct thinking about psychopathology. the Behavior Therapist, 38(7), 222-227.

Young, S., Adamo, N., Asgeirsdottir, B. B., Branney, P., Beckett, M., Colley, W., Cubbin, S., Deeley, Q., Farrag, E., Gudjonsson, G., Hill, P., Hollingdale, J., Kilic, O., Lloyd, T., Mason, P., Paliokosta, E., Perecherla, S., Sedgwick, J., Skirrow, C., . . . Woodhouse, E. (2020). Females with ADHD: An expert consensus statement taking a lifespan approach providing guidance for the identification and treatment of attention-deficit/ hyperactivity disorder in girls and women. BMC psychiatry, 20(1), 404. https://doi.org/10.1186/s12888-020-02707-9

New year, new you! 10 Steps to Change Your Life!

Are you setting goals for this year? Did you decide to get fit? Eat healthier? Spend more time with your family? Be more mindful? Read on for my famous 10 steps to change your life!

Bah, humbug!

Reflect for a moment on what you’ve just read. Head to Google and do a search using the terms “New Year” and see what you come up with. My search page showed, amongst all the horrific news of car smashes and events for the holiday season, topics like “New Year Bootcamp: Get rid of your debt”, “cook something new every week”, “read more books”, “create a cleaning schedule you’ll stick to”…

Ever wonder why we do this? Every single year?

First, we buy into the idea that our life right now isn’t good enough. There are improvements we can [read ‘should’] make.

Then we decide what “good” looks like. Better finances, healthier diet, less time on devices, cleaner and tidier house…whatever.

We then read all the things we should do – apparently, improving body, mind and soul is good for… the soul.

The popular “experts” then tell us to use a planner, tick off daily fitness goals, and tackle small actions frequently.

Betcha like anything most of us will fail. Even if we begin with the best of intentions.

This year, I’m not doing “goals” – I’ve bought into the over-use of SMART goals for too long, and I’m rejecting them. Why? Because life begins to look like a whole bunch of tick boxes, things to do, keeping the “eye on the prize” at the end. But when is “the end”? Is it a set of “yes! I’ve done it” achievements? Little celebrations? Or do we feel coerced into setting yet another goal? Can goals prevent us from being present to the intrinsic nature of daily life? I think so, at least sometimes. A goal focus can take us away from appreciating what we have right now, while also detracting from the process of going through each day. We can lose the joy of running, for example, if we’re only looking to the finish line. We can forget the pleasure of fishing in beautiful natural surroundings if we’re only looking to hook a fish!

So, as a start to this year, I’m sitting still. I’m noticing my Monday morning routine as I slurp my coffee and sit at my computer to write my blog. I’m making a choice to be present with my thoughts and ponderings. I’m looking back at the blog posts I’ve made since 2007 – all 1262 of them! – and feeling proud of my accomplishment. I’m revisiting my “why” or the values that underpin my writing. I’m acknowledging that I’ve chosen to put my voice out there, whether others read what I write or not (FWIW readership is low compared with the heady days of 2008 and 2009!). These choices aren’t in a weird pseudo-spiritual mindful sort of way, just a nod to my habits and the underlying reasons for doing what I do.

I’ve been pondering the drive clinicians have to set goals with patients, and to record achievements. As if these exist outside of the person’s context and all the other influences on what a person can and does do. There are even posts declaiming patients for not “doing the work” even after the explanations and rationales are presented, as if the only factor involved in doing something is whether it has a good enough reason for it to be done. This attitude is especially pertinent when a person lives with persistent pain, and is embroiled in a compensation system with expectations for recovery.

I suppose I’m looking for more attention to be paid to strengths people demonstrate as they live with persistent pain. More awareness of the complexity of living with what persistent pain entails (see this post for more). And for us as clinicians to be more content with what is, despite limitations and uncertainty, ambiguity, frustration and limited ‘power’ to make changes happen.

Contentment is at the heart of “fulfillment in life” (Cordaro, et al., 2016). It’s an emotion with connotations of peace, life satisfaction, and, again according to Cordaro and colleagues, “a perception of completeness in the present moment.” In English, contentment invokes a sense of “having enough” and a sense of acceptance whether the situation is desirable or undesirable (Cordaro, et al, 2016, p.224). Contentment, in contrast to happiness, is considered a low arousal state: that is, when we feel content we experience reduced heart rate, skin conductance and is associated with serotonergic activity, while happiness in contrast activates higher arousal states including dopaminergic responses (Dustin et al., 2019). The table below gives some interesting comparisons between the “reward” and the “contentment” states in humans – take it with a grain of salt, but it makes for useful pondering.

When we think about helping people with persistent pain, how often do we consider contentment as a long-term outcome? To be content that, despite all the hard work the person and their healthcare team and their family and colleagues, this person has achieved what they can. Do we even have this conversation with the person? Giving them the right to call it quits with constantly striving for more.

How can we develop contentment for ourselves and for the people we work with? Should we guide people towards activities that foster contentment? These will likely be the leisure activities that take time, that involve giving without a focus on receiving, that calm people, that invoke nurturing (plants, animals, people), and probably those that involve moderate intensity movement practices (Wild & Woodward, 2019). I hope we’ll draw on occupational therapy research and practice, because these activities will likely be long-term practices for daily life contentment, and daily life is our occupational therapy focus.

For ourselves, I suspect fostering contentment will be more difficult. Our jobs, often, depend on finding out what is wrong and setting goals for a future state, not ideal for those wanting to be OK with what is. We often work in highly stressful and demanding contexts with numerous insults to our moral ideals and values. We debate ideas and approaches to our work with vigour. We make judgements about our own performance and that of others. We often find our expectations aren’t fulfilled and that we can’t do what we think/know would be better.

I’ll leave you with a series of statements about contentment compared with other states that can be related to contentment (Cordaro et al., 2016, p.229). It helps clarify, perhaps, what we might do for ourselves in this new year. Happy 2023 everyone!

Cordaro, D. T., Brackett, M., Glass, L., & Anderson, C. L. (2016). Contentment: Perceived Completeness across Cultures and Traditions. Review of General Psychology, 20(3), 221-235. https://doi.org/10.1037/gpr0000082

Dustin, D. L., Zajchowski, C. A. B., & Schwab, K. A. (2019). The biochemistry behind human behavior: Implications for leisure sciences and services. Leisure Sciences, 41(6), 542-549. https://doi.org/10.1080/01490400.2019.1597793

Lustig, R. (2017). The hacking of the American mind: The science behind the corporate takeover of our bodies and brains. New York, NY: Avery.

Wild, K., & Woodward, A. (2019). Why are cyclists the happiest commuters? Health, pleasure and the e-bike. Journal of Transport & Health, 14. https://doi.org/10.1016/j.jth.2019.05.008

Biopsychological pain management is not enough

I recently read a preprint of an editorial for Pain, the IASP journal. It was written by Prof Michael Nicholas, and the title reads “The biopsychosocial model of pain 40 years on: time for a reappraisal?” The paper outlines when and how pain became conceptualised within a biopsychosocial framework by the pioneers of interprofessional pain management: John Loeser (1982) and Gordon Waddell (1984). Nicholas points out the arguments against a biopsychosocial model with some people considering that despite it being a “holistic” framework, it often gets applied in a biomedical and psychological way. In other words, that biomedical concerns are prioritised, with the psychosocial factors relegated to second place and only after the biomedical treatments have not helped. Still others separate the relationships between “bio” “psycho” and “social” such that the interdependent nature of these factors is not recognisable.

Nicholas declares, too:

“… that cognitive behavioural therapy interventions that did not also include workplace modifications or service coordination components were not effective in helping workers with mental health conditions in RTW. That means, just like in the case of reducing time lost at school for children in pain, the treatment providers for adults in pain for whom RTW is a goal should liaise closely with the workplace. Unfortunately, as the studies from the systematic reviews examined earlier for a range of common pain therapies indicated, engaging with the workplace as part of the treatment seems to be rarely attempted.“

I find this confusing. In 1999 I completed my MSc thesis looking at this very thing: pain management combined with a focus on using pain management approaches in the workplace. The programme was called “WorkAbilities” and included visits to the workplace, liaison with employers and even job seeking for those who didn’t have a job to return to. The confusion for me lies in the fact that I’ve been doing pain rehabilitation within the workplace since the mid-1980’s – and that while today’s approach for people funded by ACC is separated from pain management (more is the pity), there are many clinicians actively working in pain rehabilitation in the context of returning to work here in New Zealand.

I’m further puzzled by the complete lack of inclusion by Nicholas of occupational therapy’s contribution to “the social” aspects of learning to live well with pain. This, despite the many studies showing occupational therapists are intimately connected with social context: the things people do in their daily lives, with the people and environmental contexts in which they do them. You see, occupational therapists do this routinely. We work with the person in their own environment and this includes home, work, leisure.

For those that remain unaware of what occupational therapists offer people with pain, I put it like this: Occupational therapists provide contextualised therapy, our work is in knowledge translation or generalising the things people learn in gyms, and in clinics, and helping people do these things in their life, their way.

An example might help.

Joe (not his real name) had a sore back, he’d had it for about three months and was seeing a physiotherapist and a psychologist funded by ACC (NZ’s national insurer). Not much was changing. He remained fearful of moving especially in his workplace where he was a heavy diesel mechanic and was under pressure from a newly promoted workshop manager to get things done quickly. Joe was sore and cranky, didn’t sleep well, and his partner was getting fed up. Joe’s problems were:

• guarding his lower back when moving
• fear he would further hurt his back if he lifted heavy things, or worked in a bent-over position, or the usual awkward positions diesel mechanics adopt
• avoiding said movements and positions, or doing them with gritted teeth and a lot of guarding
• poor sleep despite the sleep hygiene his psychologist had prescribed
• irritability
• thoroughly enjoying the gym-based exercise programme
• hating mindfulness and any of the CBT-based strategies the psychologist was offering him, because as he put it “I never did homework when I went to school, do you think I’m going to do it now? and this mindfulness thing doesn’t work!”

The occupational therapist visited Joe at home. She went through his daily routine and noticed that he didn’t spend any time on “fun” things or with his mates. His intimacy with his partner was scant because the medications he was on were making it hard for him to even get an erection, and his partner was scared he’d be hurt when they made love. Besides, she was fed up with all the time he had to spend going in to the gym after work when he wasn’t doing simple things around home, like mowing lawns, or helping with grocery shopping.

She went into his workplace and found it was a small four-person operation, with one workshop manager, two mechanics and one apprentice. The workshop was a health and safety hazard, messy and cramped, and open to the weather. The relationships between the team were strained with unpleasant digs at his failure to keep up the pace. The workshop manager said that he’d do his best to help Joe out – but in the end he needed to get the work out on time. The other mechanic, an old hand, meanwhile was telling Joe to suck it up and be a man, but also to watch out because Joe shouldn’t do as he’d done and shagged his back.

What did our erstwhile occupational therapist do? Absolutely nothing new that the physiotherapist and psychologist hadn’t taught Joe – but she worked out when, where and how Joe could USE the strategies they’d discussed in his life contexts. She went through the way he moved in the workshop and guided him to relax a little and find some new movement patterns to be able to do his work. She graded the challenges for him, and stayed with him as he experimented. She discussed alternating the tasks he did, interspersing tasks that involved bending forward with those where he could stand upright or even work above his head (in the pit). She discussed how he could use being fully present at various times during the day (mindfulness) to check in with his body and go for a brisk walk if he felt himself tensing up. She worked through communication strategies that they rehearsed and he implemented to let his manager know what he could – and could not – do.

They discussed his home life, and ways he could begin doing some of the household tasks he’d been avoiding, and she showed him how to go about this. They worked out the best time of day to do this – and to vary the exercise he did so that it wasn’t all about the gym. He started to walk over rough ground to get more confident for when he went fishing again, and he got himself a little stool to sit on from time to time. Joe and his occupational therapist talked about his relationship with his partner, and they met together with her so they could share what his back pain meant, the restrictions he had, what he could do, and how else they could be intimate. Joe was encouraged to rehearse and then tell his doctor about the effect of his meds on his sex life.

The minutiae of daily life, translating what is learned in a clinic to that person’s own world is, and always has been, the province of occupational therapy. It’s just a little sad that such a prominent researcher and author hasn’t included any of this in this editorial.

Just a small sample of research in which occupational therapists are involved in RTW.

Bardo, J., Asiello, J., & Sleight, A. (2022). Supporting Health for the Long Haul: a literature synthesis and proposed occupational therapy self-management virtual group intervention for return-to-work. World Federation of Occupational Therapists Bulletin, 1-10.

Berglund, E., Anderzén, I., Andersén, Å., Carlsson, L., Gustavsson, C., Wallman, T., & Lytsy, P. (2018). Multidisciplinary intervention and acceptance and commitment therapy for return-to-work and increased employability among patients with mental illness and/or chronic pain: a randomized controlled trial. International journal of environmental research and public health, 15(11), 2424.

Cullen K, Irvin E, Collie A, Clay F, Gensby U, Jennings P, Hogg-Johnson S, Kristman V, Laberge M, McKenzie D. Effectiveness of workplace interventions in return-to-work for musculoskeletal, pain-related and mental health conditions: an update of the evidence and messages for practitioners. J Occup Rehabil 2018;28:1–15.

Grant, M., Rees, S., Underwood, M. et al. Obstacles to returning to work with chronic pain: in-depth interviews with people who are off work due to chronic pain and employers. BMC Musculoskelet Disord 20, 486 (2019). https://doi.org/10.1186/s12891-019-2877-5

Fischer, M. R., Persson, E. B., Stålnacke, B. M., Schult, M. L., & Löfgren, M. (2019). Return to work after interdisciplinary pain rehabilitation: one-and two-year follow-up study based on the swedish quality registry for pain rehabilitation. Journal of Rehabilitation Medicine, 51(4), 281-289.

Fischer, M. R., Schults, M. L., Stålnacke, B. M., Ekholm, J., Persson, E. B., & Löfgren, M. (2020). Variability in patient characteristics and service provision of interdisciplinary pain rehabilitation: A study using? the Swedish national quality registry for pain rehabilitation. Journal of Rehabilitation Medicine, 52(11), 1-10.

Ibrahim, M.E., Weber, K., Courvoisier, D.S. et al. Recovering the capability to work among patients with chronic low Back pain after a four-week, multidisciplinary biopsychosocial rehabilitation program: 18-month follow-up study. BMC Musculoskelet Disord 20, 439 (2019). https://doi.org/10.1186/s12891-019-2831-6

Marom, B. S., Ratzon, N. Z., Carel, R. S., & Sharabi, M. (2019). Return-to-work barriers among manual workers after hand injuries: 1-year follow-up cohort study. Archives of physical medicine and rehabilitation, 100(3), 422-432.

Michel, C., Guêné, V., Michon, E., Roquelaure, Y., & Petit, A. (2018). Return to work after rehabilitation in chronic low back pain workers. Does the interprofessional collaboration work?. Journal of Interprofessional Care, 32(4), 521-524

Nicholas, M.K. (in press). The biopsychosocial model of pain 40 years on: time for a reappraisal? Pain.

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.