Becoming resilient

Rehabilitation professions are about helping people recover from illness to return to what matters in life. Sometimes as I read the myriad social media posts on ways to help people with pain, I wonder what kind of life rehabilitation professionals live themselves. Does our focus on what’s done during rehabilitation represent the way people live in everyday life?

I suspect that because rehabilitation has emerged from a medical model, much of our expectations and the framework for our work has remained in a “fix-it” or “there you go, good as new” mindset. A kind of short-term, out the door and back home lens, exacerbated by hospital adminstrators and policy developers needs to get people to leave hospital so as not to clog the beds.

Rehabilitation is often provided for people recovering from accidental injury, at least in NZ. These services consist of lots of physiotherapy – mainly exercise prescription; vocational rehabilitation – mainly time-frame expectations for the number of hours a person should be working, with adjustments made to tasks and some equipment; psychology – possibly cognitive behavioural approaches, but no specialist rehabilitation psychology yet in NZ.

The main problems with rehabilitation for persistent pain is that while provision for people receiving compensation is available (very little for those not receiving ACC), it’s often located away from where people live their lives. Even in the workplace, much vocational rehabilitation is undertaken by clinicians who are focused on helping the person return to this job only, not respond to future developments.

I think rehabilitation professionals could take a few leaves out of an approach promoted by Steven Hayes, Professor of Psychology at University of Nevada. In a recent paper he and Stefan Hofmann and Joseph Ciarrochi wrote, he proposes an “extended evolutionary meta-model” (EEMM) could provide unity to a process-based approach to therapy (Hayes, Hofmann & Ciarrochi, 2020). Much of the paper addresses concerns about the DSM V and its abysmal record of identifying underlying aetiologies for common mental health problems – and I would argue that similar concerns apply to problems inherent in attempting to treat pain. The aetiology of a pain problem probably has little in the way of influencing how a person responds to the experience.

What appeals about the EEMM is that it builds towards recognising that “defined processes of change are biopsychosocial functions of the
person in context, as distinguished from the procedures, interventions, or environmental changes that engage such functions.”

When the human genome was first mapped, I remember the enthusiasm had for finally, finally, we’d find “the genes for…” [name your disease].

Sad to say, behaviour isn’t as straightforward as that – as Hayes and colleages point out “behavior results from a diverse set of evolving dimensions and levels that include not only genes, but also many other processes. As a result, behavioral phenotypes that clearly involve genes are not necessarily genetic in a process of change sense.” Actually, many chronic diseases aren’t nearly as straightforward as we’d hoped (think type II diabetes, for example).

So what does an EEMM approach do for rehabilitation? I think we can begin to frame rehabilitation according to the foundations of evolution: to evolve, organisms need to have variability (otherwise the whole species dies out). To be resilient, and respond to what life throws at us, humans also need to have a wide repertoire of responses. This is one part of rehabilitation – to help people develop new response repertoires that fit their new circumstances. How well do we enable people to develop a broad repertoire of ways to do things?

Rehabilitation processes work to help people choose the most useful response for what’s needed in function: selection. Selection is a key part of evolution, because it allows the organism to choose a response from their repertoire to suit the circumstances. Translating to humans, given a context, people can choose a response that enables them to do what matters in their life. For example, knowing a range of ways to move an object from A to B means humans have learned to build the pyramids, and to construct Faberge jewelry. In rehabilitation, do we enable people to develop a range of responses, and do we help them work through a process of choosing well for a given context and purpose? Is a clinic the best place to learn how to choose well? Do our rehabilitation approaches incorporate motivational factors to engage people, so they can work out what’s important for their own life and values?

Retention is another process of evolution – people need to learn a range of responses, choose appropriately and know those responses well enough for them to be used when needed. Rehearsal, practice, habits and routines are the way humans have developed patterns that enable more brain space to be dedicated to choosing the best way to achieve a goal. Being able to effortlessly vary a response because it’s well-practiced is how elite sports athletes, professional dancers, musicians and performers do what they do despite the very different places they may need to do it. I think we possibly begin to do this, but often omit the patterning, the habitual practice in many different contexts that is needed to really retain variety.

Finally, evolutionary processes are about context. When the context changes, the most adaptive beings survive because they have a range of behavioural options to choose from, they know how to choose them, and the options are well-learned – and the choices they’ve made suit the new context. In rehabilitation, how well do we vary contextual demands? How often do we help people engage in what matters in their life in the person’s real world? Do we go walking across a range of different flooring surfaces, like the slippery shopping mall, the sandy beach, the rocky river-bank, the rugby field, the park? Do we mix it up with pace – fast and slow? Do we consider time of day? Do we think about the presence of sensory stimuli? Or the absence of sensory stimuli? Do we include contexts where there are lots of people – or very few, but they’re all focused on the one person? Do we think about the size, shape, fragility, wriggliness or preciousness of an object we’re hoping the person will lift?

To really help people flourish and respond to the future demands they’ll face, rehabilitation professionals might want to consider the EEMM, and begin to adopt a process-based approach to what we do. While some of the physical rehabilitation principles we use might not change, I think we could be far more creative and responsive to the processes involved in learning to adapt to altered circumstances. Maybe psychosocial flexibility is as important as muscle strength and control?

Hayes, S. C., Hofmann, S. G., & Ciarrochi, J. (2020). A process-based approach to psychological diagnosis and treatment:The conceptual and treatment utility of an extended evolutionary meta model. Clinical Psychology Review, 82. doi:10.1016/j.cpr.2020.101908

What do occupational therapists add to pain management?

I’ve struggled with professional identity from time to time, but after completing my PhD thesis looking at how people live well with pain, I’ve developed a new understanding of how occupational therapists add value in this area of practice.

Occupational therapists joke that “no-one knows what an occupational therapist does” – and sadly, that’s true. It’s not because what we do isn’t important, it’s because our view of people and the way we work with people differs from most health professions. Occupational therapists don’t treat disease per se, we work with people’s function and participation, with a person’s illness experience. We don’t fit inside a biomedical, disease-oriented model of humans.

This means an occupational therapist works with people using a process-oriented approach. This approach begins by understanding what a person values, what matters in their life, and how the person’s life context influences their participation. Occupational therapists are concerned with the daily minutiae of life: the way you clean your teeth, how you get to work, what you do for fun, the roles you undertake, the daily routine you follow, the things that make your life your own – not a facsimile of someone else’s.

In pain management/rehabilitation, occupational therapists are there to help people resume, or begin, a life that looks like their own. To integrate strategies into daily routines and habits. To contextualise the strategies other professionals introduce. We’re the professional who talks about the timing of exercise/movement practice – how to fit exercises into each day without compromising other important routines. The details of when and where and how exercises are done in the long term, for life, in life. We encourage people to look beyond the simple 3 x 10 and into the kinds of movement opportunities that hold meaning beyond the “it will help your pain”.

Occupational therapists translate what happens in clinic settings into the real, messy, chaotic and unpredictable worlds of the people we serve. When someone is learning to develop self compassion, occupational therapists work out what this might look like in the context of being a good father, or an efficient employee. When someone is developing effective communication skills, occupational therapists are there to review when, where and how these skills are brought into play with the kids, the uncle, the neighbour, the colleague. When someone needs to learn to down-regulate a sensitive nervous system, occupational therapists are there to help assess each setting, noticing the sensory load of a situation, problem-solving ways to remain engaged in what’s important without withdrawing or overloading.

When someone’s afraid of a movement, occupational therapists go into the real world to help that person begin to do that activity – our skills are there to titrate the level of difficulty not just around biomechanical demands, but also social, interpersonal, sensory, and cognitive loads. Ever wondered why a person can manage something really well in the clinic – but can’t do the groceries, go to a restaurant, stay with friends overnight, anywhere where the demands are different? Occupational therapists can help figure out why.

For those that don’t know, my profession has been established since the days of 1793, when Phillipe Pinel began what was then called “moral treatment and occupation”, as an approach to treating people with mental illness. In the US, a National Society for the Promotion of Occupational Therapy (NSPOT) was founded in 1917, and continued through the 1920’s and 1930’s until the Great Depression. Occupational therapy became more closely aligned with medicine as part of a rehabilitation approach to recovery with wounded soldiers, those with TB (in New Zealand especially), and those with chronic diseases. In fact, occupational therapy was a registered and protected health profession in NZ since 1945 (before psychology).

It was during the 1980’s and 1990’s that the profession began questioning the medical model – and during my training in the early 1980’s, Engel’s biopsychosocial model was promoted as an over-arching approach to viewing people. So for occupational therapists, this is our practice philosophy: to look at the whole person in context.

Occupational therapists are fully trained across both physical and mental health. Our profession is one of the very few that has retained this “whole person” model of health from its inception. The value of doing, being and becoming is at the centre of practice. The appreciation that people live in a physical and social context, and that people have biopsychosocial, cultural and spiritual aspects is central to practice.

Pain is a human experience that spans the biological, the psychological, the social, the spiritual. Pain can influence all of life. When life has lost meaning because it doesn’t look like the life a person had before pain – this is where occupational therapists practice the art and science of our work.

Why are there not more occupational therapists in pain rehabilitation?

A question I’ve asked myself many times! As a small profession with a long history (as long as physiotherapy, TBH), it does seem odd that there are many, many pain rehabilitation services where never an occupational therapist has darkened the door.

Some of the reasons lie within the profession: in general, occupational therapists are busy being clinicians and have little time for research. In New Zealand, few occupational therapists pursue higher degrees, and many avoid statistical analyses, experimental design, randomised controlled studies. In fact, some occupational therapists have argued that the tailored approach used by therapists means randomised controlled trials are impossible – our interventions too complex, too individualised.

And it is difficult to describe occupational therapy in the kind of broad terms used to describe physiotherapy (movement), psychology (mind, emotions, behaviour), medicine or nursing. Occupational therapists often deal with the everyday. Things like organising a day or a week, getting a good night’s sleep, returning to work, managing household activities. Not sexy things with technical names!

So… what does a good occupational therapist offer in pain rehabilitation? These are only some of the things I’ve contributed over the years:

• graded exposure in daily life contexts like the shopping mall, supermarket, walking at the beach, fishing, catching a bus, driving
• self regulation using biofeedback, hypnosis, progressive muscle relaxation in daily life contexts like getting off to sleep, at work in between clients, while doing the grocery shopping, while driving
• effective communication with partners, children, employers, co-workers, health professionals in daily life contexts
• guided discovery of factors that increase and reduce pain in daily life contexts like the end of a working day, over the weekend, at the rugby, in the pub, on your own, in a crowd, at home
• information on proposed neurobiological mechanisms as they influence pain and doing/participating in daily life contexts, things like attention capture, distraction, memory, emotions, stress, excitement
• values clarification about what is important to a person’s sense of who they are in their daily life
• progressive meaningful movement in daily life contexts
• goal setting, planning, managing and progressing overall activity levels in daily life
• positive, pleasurable activities to boost mood, reduce anxiety and live a life more like the person wants

What characterises all that I offer? It’s context. One of the major challenges in all our pain rehabilitation is that people feel safe when in safe surroundings, with people who elicit feelings of safety. When things are predictable – like in a clinic setting – and when clinicians are present, people feel OK to do things they simply can’t do (or won’t do) elsewhere.

Life is complex. Contexts are highly variable, often chaotic, multiple demands on attention, priorities, values – and when a skill is developed in a controlled environment, like a clinic or office, it’s nothing like the real world. This, folks, is the unique contribution of a good occupational therapist.

Someone posted an image once, on the one side was physical therapy. On the other was psychology. And the question was posed: who bridges the gap between these two professions? I say definitively that this is the occupational therapy space. We are knowledge translators. We are the bridge between clinic and daily life. It is our domain, the entire specialty area of this profession. And it has been since the professions’ inception, way back in the early 1900s.

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There are occupational therapists who let us down. These are the therapists who focus exclusively on occupational participation without factoring in that we are also a rehabilitation profession. These occupational therapists provide equipment to people who are sore: the new bed, the shower stool and rails, the kitchen stool and trolley, the bed and chair raisers. Now there may be good reason for installing these gadgets – in the short term. They might keep someone safe in their environment so they can do what’s important. AT the same time they can, and do, reinforce the idea that this person cannot do, and certainly cannot change. While installing these things can mean a person is able to do – the person also learns to avoid doing these movements. This is such an important concept in pain rehabilitation – because progressively working towards being able to manage normal activities without aids is what we’re aiming for! An occupational therapist installing these things without reviewing and supporting the person to no longer need these things is just like a physiotherapist offering a person a back brace or splint and never reviewing whether it’s needed.

Why is it difficult to acknowledge occupational therapy’s contributions? Partly our rejection of a biomedical model based on diagnosing disease. Occupational therapists are about the person’s illness experience, our model is wholistic, biopsychosocial, integrative. It’s hard to articulate our contributions without using a lot of words! Or making it seem so dumbed down that people view the exterior actions (cleaning teeth, having a shower) without recognising the myriad contributing factors that influence whether this action is carried out successfully.

Occupational therapists have relied on qualitative research to examine the lived experience of people dealing with persistent pain. Rather than pointing to randomised controlled trials of broad concepts like “exercise”, we’ve tended to describe the individual and unique experiences of people as they regain their sense of self. Not something easily measured like range of movement or cardiovascular fitness, or even simple measures of disability and self efficacy. Peek behind these descriptions you’ll find synthesised strategies that integrate values, committed actions, sense of self, cognitive defusion, behavioural approaches – messy things that aren’t readily translated into simple cause and effect experiments. Multifactorial approaches that recognise that life is a contextual experience.

I contend that one of the major failings in pain rehabilitation is helping people reclaim their sense of self again. Self concept is ignored in favour of changing a person from a couch spud to a gym attender. Even psychologists can forget that when instilling new strategies, the person in front of them has to learn to integrate these new things into their world – and that means adjusting their sense of who they are. That’s the hidden work people living with persistent pain have to do, rarely supported. And yet it’s the thing people most want to resolve when they’re dealing with this experience. Who am I? Can I be me again? If I can’t be the old me, can I at least get something of what was important to me back again?

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What I’d like to see are more occupational therapists being confident about what our profession offers, being willing to step up and be the resource we know is needed. We don’t need to be defensive about this – but we do need to be sure about the validity and relevance of why our contribution is so important. I think the results from research showing how short-lived positive results of pain rehabilitation really are speak for themselves. Maybe the missing link is knowledge translation into daily life contexts?

Pacing, pacing, pacing…

If there’s one pain management and rehabilitation strategy that keeps me awake at night, it’s pacing. Living with persistent pain, I loathe the idea of pacing because I know everyone “booms and busts” from time to time, and few people like the idea of planning every single aspect of every single day as they come to grips with modifying their daily routines. BUT it’s one of the most popular strategies in textbooks, self-help books, and in treatment so there must be something in it, right?

Vexed definitions

One of the problems with the whole pacing concept is defining what we mean by it. I like Nicole Andrew’s approach: Nicole acknowledges that defining pacing is difficult, so when she talks about her research into pacing, she’s clear about the definition she’s using in that piece of work.

Various definitions abound. As a broad concept, pacing refers to organising daily activities in such a way that a specific end is achieved. The difficulty arises when we begin to determine the end goal of pacing (pain reduction? maintaining consistent activity levels? completing important tasks? avoiding a flare-up? reducing the relationship between pain fluctuations and activity? increasing overall activity levels over time?) and the means used to achieve these ends (time as a guide? activity intensity as a guide? importance and values as a guide? “spoons” of energy as a guide?). You can see how complex this concept is…

Nielson, Jensen, Karsdorp & Vlaeyen (2013) discussed this and identified two treatment goals (they weren’t considering the spontaneous use of pacing, nor the use of pacing outside a treatment context). “Whereas the operant approach seeks to improve function (decrease disability), the energy conservation approach is designed to reduce symptoms (pain, fatigue).”

Fordyce developed the operant conditioning approach, viewing pain behaviours as reinforced by other people – or by avoiding negative consequences such as a pain flare-up. His approach involved establishing a quota – a certain number, or a certain time in which people maintain activity irrespective of pain flucuations. In a clinical setting, this is the approach I mainly use, though there is an art to setting the “minimum” a person does (setting a baseline) and to nudging the activity levels up.

Sternbach, another influential pain management person from around the late 1970’s, followed a similar approach – but instead of simply establishing a baseline, he advised people to anticipate the point at which they would increase their pain and to stop the activity just before then. This is also a popular approach in pain management rehabilitation today – but has the unfortunate effect of reinforcing a pain avoidance (and pain contingent) approach, if not done very carefully.

Occupational therapists have frequently advocated the “5 p’s”. Pacing, positioning, posture, persistence and problem-solving. This approach was based on energy conservation, and while I can’t find the original papers from which this approach was developed, it was introduced to me as part of rheumatology practice, and in conditions where fatigue is a problem such as multiple sclerosis. I can see it being used today as part of the popular “spoons” meme where people are thought to have a fixed number of “spoons” of energy, and need to allocate their energy accordingly. My main criticism of this approach is that it doesn’t allow for people to increase their capabilities over time, either through “training” effects, or habituation.

Now, how about some evidence for any of these approaches?

Well therein lies a problem – there is very little research to support activity pacing despite its popularity. This is why I was so interested when I spotted a pilot study published in Journal of Pain, testing the energy conservation approach to activity managing (aka pacing) against an operant conditioning approach in a group of people with fibromyalgia. This group of people provides us with a useful population to test both approaches because fatigue is thought to be a prominent feature of fibromyalgia, and energy conservation has some degree of face validity for managing fatigue.

The design of the study involved four groups, two immediately treated using either an operant conditioning variant of pacing, or the energy conservation variant, and two groups with delayed treatments, again with the two versions (these groups acted as the control groups for this study). 178 participants were involved, with confirmed diagnoses of fibromyalgia given by occupational therapists using the American College of Rheumatology’s 2010 FMS diagnostic criteria. If the occupational therapist had doubts about the individual’s diagnosis, or the person wasn’t able to provide formal documentation confirming the diagnosis, the study rheumatologist assessed the potential participant for inclusion. This is an important procedure in studies of people living with fibromyalgia, given there is no definitive diagnostic test such as a blood test or imaging result.

The two treatment approaches were documented in treatment manuals to establish consistency, and it’s interesting to note that the approaches were applied across all activities in a day rather than just exercise, as often happens. For full descriptions of each of the ten treatment sessions, the article should be referred to, and the treatment manuals are available at http://research.melanieracine.com/activity management

Cutting to the chase, what did they find?

Well… to quote the authors “Inconsistent with the study’s primary hypothesis, neither treatment was effective in reducing average pain or usual fatigue symptoms. However, analyses of secondary outcome measures suggest the possibility that OL-based activity pacing treatments might be more effective than EC-based treatments in improving patient function.”

I didn’t expect pain reduction, or fatigue to be altered by an activity management approach: the relationship between movement and pain is highly variable, and there are many times we’ll be happy doing something and not experience pain simply because it’s something we enjoy. At the same time, I did hope to see a difference between the two approaches in terms of overall “doing” (function). My expectation was that pain may actually increase as people begin doing more, or alternatively, that people will feel more confident that they can achieve what’s important to them in a day, and that pain intensity becomes less of a guiding factor. The authors provide some explanations: perhaps the study numbers were too low to detect a difference (ie the study was under-powered); and perhaps a brief intervention isn’t intensive enough to help change over so many different aspects of a person’s life. Or perhaps, I want to add, neither approach is terribly great and while they both have intuitive appeal, persistent pain is too complex for any single activity management approach to make much of a difference. Maybe it’s something that needs other strategies to be incorporated such as exercise, mindfulness, medications, and even scheduling pleasant events.

So where does this leave us?

I guess for me, I like to think of activity pacing as one of many different tools in my toolbox. I bring it out when I’m attempting to increase my overall activity level – such as my walking programme, where I’m slowly but gradually increasing my capabilities without giving myself a whole two weeks of DOMs! I otherwise use a more flexible activity management approach: if something is important to me, and I think I can deal with the flare-up, I’ll do it. If it’s not as important to me, or I don’t think I can deal with the flare-up, I’ll probably modify my approach. Pacing, or activity management is only one tool…

Andrews, N. E., Strong, J., & Meredith, P. J. (2012). Activity Pacing, Avoidance, Endurance, and Associations With Patient Functioning in Chronic Pain: A Systematic Review and Meta-Analysis. Archives of Physical Medicine and Rehabilitation, 93(11), 2109-2121.e2107.

Nielson, W. R., Jensen, M. P., Karsdorp, P. A., & Vlaeyen, J. W. S. (2013). Activity Pacing in Chronic Pain: Concepts, Evidence, and Future Directions. Clinical Journal of Pain, 29(5), 461-468.

Racine, M., Jensen, M. P., Harth, M., Morley-Forster, P., & Nielson, W. R. (2019). Operant Learning Versus Energy Conservation Activity Pacing Treatments in a Sample of Patients With Fibromyalgia Syndrome: A Pilot Randomized Controlled Trial. Journal of Pain, 20(4), 420–439. https://doi.org/10.1016/j.jpain.2018.09.013