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

On the problem of coping

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Making sense of pain

Humans have an incredible desire for things to make sense. We want things to fit a story or what’s expected – and we get right discombobulated (it’s a word) if we encounter a situation where things don’t make sense. To a certain extent we can blame our use of language for this, because it’s the way we’ve learned to pair words with concepts, and to associate multiple concepts together. For example, we learn “ouch” is associated with that unpleasant sensory and emotional experience that we’ve learned goes along with scrapes or bumps or cuts. We’ve also learned that “ouch” goes along with “it will go soon” and “don’t use that bit too much or it will hurt for longer” as well as “big boys don’t cry” and “you’re just being lazy if you don’t suck it up” and “whiners talk about their back pain all the time” and other similar notions. This is how humans connect visible objects (nouns) with words and other invisible concepts to create a network of meaning that, among others who share similar language and culture, means we can communicate with one another and go beyond the here and now and into the future and recall the past.

Even when events don’t make sense, we struggle to create a sense from it – we even say things like “this doesn’t make sense” as a way to classify the event along with a bunch of other “events that don’t make sense”. 

Why does this matter?

Well, because we want life to make sense, and to understand what we and others are up to, we create meaning and sense (coherence) even where there is no sense. Sometimes we grasp at straws (otherwise known as explanations from people who may not actually know what’s going on, but can spin a good tale). And at times, grasping at these straws means we ignore our own experience just so we can  hold on to what we think ought to be there. Here’s an example: some of us have back pain. We don’t know why it started, but we try to make sense of why we experience it by drawing on things we’ve been told by others – we might blame age, lifting “incorrectly”, weak “core” muscles, or differences in how long our legs are. Now the explanation itself doesn’t need to even be accurate – what’s important is that by accepting an explanation we become less sensitive to alternative explanations, and even more importantly, we begin to ignore what our own body feels like because we think we should believe what an expert tells us.

The problem with trying to make an explanation work for us, when it’s not necessarily so, is that in adopting that explanation we may find it a lot more difficult to respond flexibly to different situations. For example, if we’ve learned that back pain happens because of poor posture (where “poor posture” means not holding the spine a certain way), then we have more difficulty doing things when we’re in situations where being hunched over is the only way to get into an awkward situation, like when we have to lift a child into the back seat of a car, or put the pots back into the back of the bottom shelf of the cupboard.

Explanations for pain

Because pain is so common, and critical for human survival, we hold deep and powerful beliefs about what pain should mean, and how we should handle it. We probably all learned that pain is temporary and generally settles down once tissues have healed. We might have learned to hide our tears and not to ask for help when we’re sore. We probably grew up knowing that if tissues are really mangled, then it really hurts, and if it’s a paper cut it shouldn’t bother us. And we learned all the myriad concepts associated with pain – like being too withdrawn or tearful means we’re not really very brave, that if we get angry and hit out at someone who’s helping us with our pain, it’s very bad. We learned that it doesn’t hurt as much when someone “kisses it better”, and we learned that we should find out what’s wrong, get it fixed, and get over it.

But what happens when pain violates our past experience and all the explanations we’ve been given before?

What if we have pain that doesn’t disappear? What if the explanations we get given don’t fit with our own experience? What if the very things we’ve been told to do to “help” our pain actually make our lives worse? What if we’re clinicians who find that all the things we’ve been told should work – just don’t.

If we’ve been good learners, most of us will be unsettled by these inconsistencies. Things don’t add up. We probably keep on looking for “the answer” that will fix the problem. We’ll probably feel guilty and perhaps even a bit embarrassed that this pain is different. We might doubt our own experience and worry that we’re being just a bit pathetic or a really don’t want to get better. Or if we’re clinicians, we may wonder if the person wants to get better, or if they’re really doing the exercises the way they should…

And this isn’t helped by well-meaning people who might suggest that we should keep on looking for “the answer” – even when doing this gets in the way of important things we want to be able to do! So we might take the pills that make us feel groggy and constipated. We keep on doing the exercises that are boring and don’t seem to change anything. We do these things not because they work – but because we think they should work. And so we all get frustrated and irritated and just don’t live lives of richness and fulfillment. Perhaps we forget what we want our lives to stand for anyway.

Difficult conversations

It isn’t easy to talk about pain that doesn’t do what it ought to. Our very human nature makes the situation difficult. I’m hoping that by beginning to think more contextually, more about what works in the here and now, about having a range of options to try so we don’t get backed into an unworkable corner just because that’s what someone has suggested should work, that we the people (those living with chronic pain and those working with those who live with chronic pain) might gently and creatively develop some flexibility around what can be such a sticky  concept. Maybe that’s what resilience is?

 

Flexibility: not just movement variability

For many therapists, learning the Right Way to treat a person experiencing pain means following rules. Observe this, identify that, follow the yellow brick road and end up with the right result. The problem is that people don’t always respond in the way the rules suggest meaning both clinician and patient can be confused about what to do next. While it’s normal to generate clinical heuristics, or rules of thumb, these can limit the way we approach helping someone.

I’ve been pondering this as I’m reading Villatte, Viullatte and Hayes Mastering the clinical conversation: Language as intervention. I posted last time I wrote about the problems that language can pose for us as we attend to the concepts and relationships those word generate for us rather than noticing what is actually happening right here and now. I was originally thinking of the people we work with and treat, but now I want to turn my attention to us – because we too can be imprisoned within rules that function well in one context – but hamper flexible responses in other contexts.

The rules we follow

Some of the rules we learn during our initial clinical training can be very helpful – for example, we learn that we need to attend to what people say and do; we learn to suppress our judgements about the person as “likeable” or “unlikable” (hopefully); we learn the importance of using correct terminology with one another. Other rules are far less helpful: in my case, learning that people “should” use a raised toilet seat after hip replacement (almost irrespective of the bathroom they have, the alternatives they’d already organised, or whether it actually reduced the risk of hip dislocation) meant that I tried to give the things out to people who didn’t actually need them. I quickly stopped doing that after I found too many of those toilet seats dumped on the roadside inorganic rubbish collection! And I became more sensitive to who, what, when and where. And I changed my thoughts once I read the research suggesting those “hip precautions” perhaps don’t hold up to scrutiny (for example: Schmidt-Braekling, Waldstein, Akalin, et al, 2015; Ververeli, Lebby, Tyler & Fouad, 2009).

We follow many other clinical rules – for example, we attend to certain features of a person’s presentation because we’ve been told it’s important. Depending on the model or theory we hold about the problem, we’ll attend to some things and not others.

Similarly in terms of our treatments – we’ve been told that some treatments are “good” and others not so. Some of us follow these rules very strictly – so patients are told to move in certain ways, to avoid certain movements, to do six repetitions of an exercise, to stop for a break every hour – and some of us have even been quite frustrated because the patients we’ve been advising tell us these rules aren’t working. We think “but they should”!

Explaining pain

A good example of this is the push to ensure every person experiencing pain gets an explanation for their pain. We’ve seen the evidence showing it’s a good thing, and we’ve even learned a set of phrases that we’ve been told “work”.

BUT is this a rule we should always follow?

Flexibility

In some instances giving pain education is unhelpful. Times I can think of are when a person is presenting with high pain intensity and in an acute situation – or when they’re stuck with an explanation they prefer and aren’t ready to consider another, or when they have other more important concerns.

Based on what I’ve been reading, perhaps we need to consider some alternative ways of looking at this “rule”.

Here’s the thing: for some people, at the right time, and when the person is being helped to discover for themselves, learning about pain neurobiology is a really good thing. But if we apply this as a rule, we risk becoming insensitive to other things the person might need AND to whether the education has had the intended effect. For some people, it’s not the right thing – the outcome for THAT person might be seen in increased resistance to your therapeutic approach, or arguing back, or them simply not returning because we “didn’t listen” or “told me it’s all in my head”. For others, this information might be useful but not as important as identifying that they’re really worried about their financial situation, or their family relationships, or their mood is getting them down, or they’re not sleeping…

Am I suggesting not to do pain education? Not at all. I’m suggesting that instead of developing a rule that “everyone must have pain education because it’s good” (or, for that matter, any other “must”), clinicians could try considering the context. Ask “is this important to the client right now?”, “what effect am I hoping for and am I measuring it?”, “how can I guide the person to draw their own conclusions instead of telling them?”

In other words, attending to those contextual cues might just help us think of a bunch of alternative ways to help this person achieve their goals. And if we then ask the person to collaborate on HOW to reach those goals, suggesting the plans are experiments that both of you can evaluate. This helps reduce our human tendency to latch onto an idea, and then create a rule that isn’t always helpful.

 

Schmidt-Braekling, T., Waldstein, W., Akalin, E. et al. Arch Orthop Trauma Surg (2015) 135: 271. doi:10.1007/s00402-014-2146-x

Ververeli P, Lebby E, Tyler C, Fouad C. Evaluation of Reducing Postoperative Hip Precautions in Total Hip Replacement: A Randomized Prospective Study. ORTHOPEDICS. 1; 32: doi: 10.3928/01477447-20091020-09 [link]

Villatte, M., Viullatte, J., & Hayes, S. (2016). Mastering the clinical conversation: Language as intervention. The Guilford Press: New York. ISBN: 9781462523061