values

Who am I? The sense of self in chronic/persistent pain


One of the most pervasive descriptions of what it is like to live with persistent pain is the loss of sense of self. Time after time in qualitative research we read about people feeling they’re in “limbo land”, losing confidence that they can do what matters in their lives, feeling stigmatised and isolated – not themselves any more. An in-depth meta-ethnography of qualitative research showed that pain undermined participation, ability to carry out daily activities, stymied a sense of the future, and intruded on the sense of self (MacNeela, Doyle, O’Gorman, Ruane & McGuire, 2015).

To understand the idea of “self”, I poked about a little in the literature, and found a title I like “Becoming who you are” (Koole, Schlinkert, Maldei & Baumann, 2019). The theoretical propositions of this paper relate more to self-determination than self-concept – but that title “Becoming who you are” resonated strongly with me.

When I read through pain rehabilitation research and theory, especially that dealing with learning how to live well with pain, I rarely see anything written about how we might help people who feel alienated from their sense of self. Scarcely a word. Except in the psychological literature. There’s a bit about self-discrepancy theory (See E. Tory Higgins works for much more about self-discrepancy), where the “imagined self”, the “real self”, the “feared self” and the “ought self” don’t match – but not much about what to do about helping people restore a sense of self, particularly in physical and “functional” rehabilitation.

Silvia Sze Wai Kwok and colleagues (2016) argue that psychological flexibility can play a role in helping people adjust to chronic pain. They found that psychological flexibility mediated between self-discrepancy (how close is my current self to my feared or ideal self?) and pain outcomes (distress, disability and so on). In other words, the degree to which people could flexibly adjust their goals and actions to suit what they could and couldn’t do made a difference.

This seems like common sense. Kinda. As the authors put it: “recognition of self worth and self-values could be attuned through flexible (re)construction of self-concept in response to changing contexts. These adaptations and regulatory functions then in turn may predict the subjective feelings of pain interference, emotional distress and pain tolerance level perceived.”

So my question is: how often does this become openly discussed in pain rehabilitation? Particularly by occupational therapists and physiotherapists – the clinicians who most often work on goals and helping people achieve them?

Whether a person is “motivated” to pursue important goals depends on whether the goals are important to them and whether they think they’ll successfully achieve them. When someone is “non-compliant” it’s because either the rehabilitation activities are not as important as something else in the person’s life, OR they’re not at all confident they can be successful at it. An enormous part of our job as rehabilitation professionals is helping people re-examine what they want to do and helping them adjust how to achieve the underlying values, even if the particular goal isn’t possible – yet. So, for example, if a person really values being a conscientious worker but can’t sustain a full working day, we can either help them fell OK about being conscientious for fewer hours, or we can make the work less demanding. I see this as an especially valuable contribution from occupational therapists.

Should rehabilitation clinicians be involved in this kind of “self-concept” work? I think so – especially occupational therapists. Occupational therapists are about doing, being and becoming – by doing things, we express who we are, and what we choose to engage in also shapes our perceptions of ourselves. As therapists we can’t help but influence a person’s self-concept – if we’re hoping to increase self-efficacy, we’re automatically influencing self-concept. If we’re working on goals, we’re influencing self-concept. If we’re working on participation in life, we’re working on self-concept.

And physiotherapists? Self-concept? Yep – of course. If we’re helping someone do exercise, that’s going to influence that person’s beliefs about exercise and their capabilities – that in turn is going to influence self-concept. (psst! it might be even more powerful if movements are done in the context of daily life, where feedback is real, meaningful and ever-present).

Persistent pain challenges the automatic assumptions people hold about what they can and can’t do, what they’re good at, what’s important in life, and how to engage with “the world” at large. Our job as clinicians is to be sensitive to just how confronting it is to find that what used to be effortless and meaningful is now daunting and requires more concentration and thought than we ever believed. I think that’s part of our job, irrespective of professional labels.

Koole, Sander L., Schlinkert, Caroline, Maldei, Tobias, & Baumann, Nicola. (2019). Becoming who you are: An integrative review of self-determination theory and personality systems interactions theory. Journal of Personality, 87(1), 15-36. doi: 10.1111/jopy.12380

Kwok, Silvia Sze Wai, Chan, Esther Chin Chi, Chen, Phoon Ping, & Lo, Barbara Chuen Yee. (2016). The “self” in pain: The role of psychological inflexibility in chronic pain adjustment. Journal of Behavioral Medicine, 39(5), 908-915.

MacNeela, Padraig, Doyle, Catherine, O’Gorman, David, Ruane, Nancy, & McGuire, Brian E. (2015). Experiences of chronic low back pain: a meta-ethnography of qualitative research. Health Psychology Review, 9(1), 63-82.

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

One-session instruction in pacing doesn’t work


If there’s one form of coping strategy that occupational therapists love, it has to be the idea of “pacing”. Of course, the concept of pacing is vexed: we don’t have a good definition that’s widely accepted so it’s difficult to know whether we’re doin’ it right, but the idea of chunking down the amount of activity carried out at any one time is widely used as one way for people to sustain activity involvement despite pain and fatigue.

Today I’m looking at an old paper (from 2016) where people with osteoarthritis (hip or knee) were given instruction in time-based activity pacing by an occupational therapist. Surprisingly, this was a three-arm randomised controlled study, where 193 people were randomised into tailored activity pacing, general activity pacing, or usual care. I say surprisingly because RCT’s are fairly rare in occupational therapy research in persistent pain, and nigh on impossible to get funding for (sigh).

The definition of pacing used in this study was “the regulation of activity level and/or rate in the service of an adaptive goal or goals” (Nielson, Jensen, Karsdorp & Vlaeyen, 2013) although the form of pacing offered by clinicians working in this field is still unclear. In this study, the “tailored” group underwent seven days of monitoring using an accelerometer, the results were downloaded, analysed and an individualised pacing plan developed by the therapists. The plan was intended to highlight times when the person had high or low levels of activity (as compared with their own average, and averages drawn from previous studies of people with the same diagnosis), and to point out associations between these activity levels and self reported symptoms. Participants were then provided with ideas for changing their activity levels to optimise their ability to sustain activity and minimise symptom fluctuation.

In the “general” pacing group, participants were given the same sorts of instructions, but instead of using objective data from their own activities, they were asked to recall their past situations and symptoms, and broad guidelines were given instead. Both groups had three sessions with comparable educational material.

In the usual care group, participants were instructed to carry on with their usual approach to activity, and were assessed at baseline, 10 weeks and six months, using the same assessment process as those in the experimental arms.

Outcome measures were fatigue, measured by the Brief Fatigue Inventory (Mendoza, Wang, Cleeland, Morrissey, Johnson, Wendt & Huber, 1999); and the 8-item PROMIS fatigue short form. Pain severity was measured using the pain subscale drawn from the WOMAC. Additional measures included the 6-minute walk test; the WOMAC physical disability short form scale; the Arthritis Self-Efficacy Scale; the CES-D depression measure, and various demographic and disease measures (joint space narrowing, osteophyte formation etc). Finally, to determine activity pacing adherence, the pacing subscale of the Chronic Pain Coping Inventory was used (Jensen, Turner, Romano & Strom, 1995).

What did they find?

Well, you may have guessed from the title of this post: although people given the pacing intervention said they benefited, and they changed the way they carried out daily activities, the results showed that although they did so, the only significant change on measures taken was for WOMAC pain, in which the people in the general pacing group reduced their pain over the first 10 weeks. BUT participants in the usual care group reduced their pain over six months!

What does this mean?

Should we all throw out the idea of paced activities? Should occupational therapists despair and go back to the drawing board?

I don’t think so, and here’s why.

I think targeting pain intensity is possibly the wrong outcome in a study like this. We already have a vast collection of studies showing that pain intensity and disability are not well-correlated. Pain intensity alone isn’t the main reason people stop doing things when they have osteoarthritis – it’s often fear that the pain signifies “bone on bone” and “wear and tear” and “cartilage disintegration” (Hendry, Williams, Markland, Wilkinson & Maddison, 2006). And we also know that people with osteoarthritis develop their own self-management strategies and that these focus on maintaining everyday social roles and valued activities (Morden, Jinks, Bie Nio, 2011). Values seem to help people engage in demanding activities, whether the demands are because the activities hurt, or they’re physically demanding, or they’re not our favourite thing to do (think vacuum cleaning when Mum is coming to visit!) (McCracken & Keogh, 2009).

Perhaps, by drawing attention to both activities and pain intensity, the therapists in this study created a situation where pain intensity became more salient to the participants. Perhaps, too, aiming to reduce pain doesn’t take into account the other values people may hold. For example, even if I’m sore I’ll rush around cleaning if I know my parents (or other visitors) are coming to visit. My pain intensity matters less than feeling embarrassed at an untidy house.

I think we need to revisit the aims of pacing activity. To me there are several reasons for having the strategy available when/if needed:

  1. If I want to work consistently at something that’s going to take a week or two to do. Example: I recently laid bricks under my cherry tree. I did this over three weekends because digging into really hard soil, heaving bags of sand, and placing the bricks is something that increases my pain quite a lot. Because I have other things to achieve over the weekend and during the week, and laying the bricks wasn’t a top priority, I chose to do about a metre square each day of each weekend.
  2. If I’m aiming to do something quite demanding – like go on a two-day tramp (hike). I’ll try to build my activity tolerance over similar terrain with similar loads in advance of the actual trip.
  3. If I really loathe the job and would otherwise avoid it… For example, vacuuming and mopping my floors. I’ll do a room at a time because I seriously do not enjoy housework!

Looking at activity management in isolation from what a person believes is important makes this strategy pretty unpalatable. Combine it with values, and we’re starting to see something that can be employed flexibly and when it’s workable.

 

Hendry, M., Williams, N. H., Markland, D., Wilkinson, C., & Maddison, P. (2006). Why should we exercise when our knees hurt? A qualitative study of primary care patients with osteoarthritis of the knee. Family Practice, 23(5), 558-567.

Jensen MP, Turner JA, Romano JM, Strom SE. (1995). The Chronic Pain Coping Inventory: development and preliminary validation. PAIN ;60, 203–16.

McCracken, L. M., & Keogh, E. (2009). Acceptance, mindfulness, and values-based action may counteract fear and avoidance of emotions in chronic pain: An analysis of anxiety sensitivity. The Journal of Pain, 10(4), 408-415. doi:http://dx.doi.org/10.1016/j.jpain.2008.09.015

Mendoza TR, Wang XS, Cleeland CS, Morrissey M, Johnson BA, Wendt JK, Huber SL. (1999). The rapid assessment of fatigue severity in cancer patients: use of the Brief Fatigue Inventory. Cancer 85, 1186–96.

Murphy, S. L., Kratz, A. L., Kidwell, K., Lyden, A. K., Geisser, M. E., & Williams, D. A. (2016). Brief time-based activity pacing instruction as a singular behavioral intervention was not effective in participants with symptomatic osteoarthritis. Pain, 157(7), 1563-1573.

Morden, A., Jinks, C., & Bie Nio, O. (2011). Lay models of self-management: How do people manage knee osteoarthritis in context? Chronic Illness, 7(3), 185-200.

Nielson WR, Jensen MP, Karsdorp PA, Vlaeyen JW. (2013). Activity pacing in chronic pain: concepts, evidence, and future directions. Clinical Journal of Pain, 29, 461–8.

Persson, D., Andersson, I., & Eklund, M. (2011). Defying aches and revaluating daily doing: Occupational perspectives on adjusting to chronic pain. Scandinavian Journal of Occupational Therapy, 18(3), 188-197. doi:http://dx.doi.org/10.3109/11038128.2010.509810

One way of using a biopsychosocial framework in pain management – v


Theories are an important part of scientific development. Theories are essentially a collection of propositions or hypotheses that build a picture of what is in order to predict or control or somehow explain what’s going on. The extent to which a theory’s predictions represent what actually happens, given a set of circumstances, allows us to place more or less faith in the adequacy (or perhaps accuracy) of that theory. The problem with social theory is that there are so many complex interactions between variables that it’s very hard to generate hypotheses that represent what actually goes on in the world – so we end up with skinny theory that explains very little, and in turn this allows naysayers to argue “oh but it isn’t so”.

A biopsychosocial framework is one of those messy, complex theoretical models of “the way people are” that beg for people to argue against it. “It’s too complex”, “it’s too broad”, “it’s too reductionist”, “it’s not clinically useful” – all points against this way of viewing people. Yet, after years of using this model, I still find myself unable to find an alternative way of attempting to understand my two clinical questions: why is this person presenting in this way at this time (and what is maintaining their situation), and what can be done to reduce distress and disability?

Social theories are not something many health professionals are introduced to during their undergraduate training. We’re not trained to understand topics like structure of societies, organisations, groups and everyday lives and how they come about. We don’t typically get trained to think about power and who defines what is normal and abnormal, or who generates names for things – classifications, taxonomies, diagnoses. We rarely get to unpack the hidden discourse of who holds power in healthcare delivery, policy development – even social spending on health.

The people I typically see, living with persistent pain, are often from what posh folks call “the wrong side of the tracks”. Many people don’t have good employment histories. They may not have savings, they may live off a benefit. They are often not well-educated, having left school to do manual work. Their daily routines might be chaotic, and the idea of “keeping fit” or “eating well” doesn’t occur to them because their lives are about getting through the day, loving the family they have, and maybe looking towards a tomorrow where things might be different.

In pain management, we’ve not really spent much time examining the kinds of social relationships or social structures in which the people who really struggle with managing pain come from.  I’m not sure I’ve read very much research exploring, for example, whether people who have two jobs and live on a minimum wage experience greater difficulty developing skills in pacing their activities. I’ve not heard much from the people who live in this way expressing their understanding of what contributes to their distress and disability. I don’t see much about how uncertainty of employment pushes people into unsuitable work – while work is good for most people, what about those minimum wage jobs with unsavoury work environments, precarious employment tenure, cold, wet, smelly and physically demanding jobs with little prospect for the future? I don’t see very much about the effect of someone living on the bare bones of their threadbare trews going to see a medical specialist dressed immaculately in a bespoke suit and silk tie, with the handmade shoes and a language of healthcare that is incomprehensible to anyone other than another similarly clad specialist.

For a sociopsychobiological model of pain (yes, that’s a word, and no I haven’t got it backwards – see this) to gain traction, I think it’s timely to ponder the way our communities view persistent pain. Communities include our own healthcare communities – the manual therapy, physical therapy, occupational therapy, nursing, medical enclaves that use special language and dress in certain ways to demonstrate that we know our stuff. And we need to take a minute to understand the communities the people we hope to help come from.

At the stroke of a keyboard, the labels we give to someone – fibromyalgia, “degenerative changes”, “pre-existing condition”, “depression” – alter the treatment that person receives within healthcare. No question about it – if a person is receiving accident compensation (in NZ it’s ACC) and someone gives that kind of label to them, they’re going to the bottom of the health queue. The vagaries of our system mean that person doesn’t receive work-related rehab, they’re disentitled from ACC, no more weekly compensation, and oh yes they now go through the dehumanising process of attending the “Ministry for Social Development”.

I’m not arguing against the way our ACC legislation is written. And I’m not certain that receiving compensation is always a good thing. What I am pointing out is that when health professionals view the person in front of them as “other” – beneficiary, ACC claimant, pain patient – we are issuing a social declaration. And that means we’re exerting a degree of power over them and their lives. The labels we give have power. And this has a significant impact on the way that person views their pain, and the treatment they may receive.

I think until we begin to include, extend, and invite people living with pain to co-investigate their experience and to contribute to our health professional education (including scientific meetings), we’ll carry on thinking of ourselves as somehow superior to, and certainly more powerful than, the people we hope to treat. Hats off to Rajam Roose for developing the San Diego Pain Summit where this year she’s included a patient panel to give an insight into what it means to hear “your pain is just an output of your brain”. Can we have more please.

What can we do to reduce distress and disability? One thing we can do is begin a conversation about persistent pain being something that anyone can experience. It’s just that people without resources end up dealing with not only pain but also lack of power to change the way it’s treated.

What is pain for?


We’re told we need pain – without the experience, we risk harming our bodies and living short lives. With pain, and for most people, we learn to not go there, don’t do that, don’t do that AGAIN, and look at that person – don’t do what they’re doing! Thirst, hunger, fear, delicious tastes and smells, the feelings of belonging, of safety and security, of calm and comfort: all of these are experiences we learn about as we develop greater control over our bodies.

Pain is an experience we learn to associate with actual or possible threat to “self”. Let’s take a moment to think about what “self-hood” means.

If I ask you “who are you?” you’ll tell me your name, probably your occupation, maybe where you live and who you live with. Baumeister (1997) suggests our sense of self is about “the direct feeling each person has of privileged access to his or her own thoughts and feelings and sensations.” He goes on to say “it begins with the awareness of one’s own body and is augmented by the sense of being able to make choices and initiate action.” We learn about who we are through interacting with the environment, but also as we interact with other people and begin to sort through our roles, contributions and relationships.

Of course, our sense of self changes over time and is reciprocally influenced by choices we make as well as opportunities (and threats) around us, both environmental and social.

We work really hard to avoid threats to our sense of self. For example, I’ll bet we’ve all seen that person who steadfastly refuses to stop colouring his hair, wearing the same clothing styles as he did in his 20’s, holding on to the same habits as he did at the same age even when he’s now in his 50’s, has a paunch, and still looks for partners 20 years younger than he is…  He still believes he’s that young stud despite the evidence in the mirror. And of course the same applies to women perhaps more so!

So what happens when our mind/body is threatened? How do we know it? And what do we do about it?

In this instance I’m not talking about social threats, though there’s interesting research suggesting that being socially excluded has similar neurobiological effects as being physically threatened (or experiencing pain – though this may reflect the distress we experience when we’re hurt and when we’re socially excluded – see Iannetti, Salomons, Moayedi, Mouraux & Davis, 2013; Eisenberger, 2015). I’m instead talking about threats to our physical body. Those threats may be violence from another person, physical trauma to the body, or the threat of physical harm to the body. When we experience these kinds of threats, and once an aspect of mind/body has disentangled the threat evaluation from whatever other goals we’re currently engaged in, we experience pain. Tabor, Keogh and Eccelston (Pain, in press) define pain in terms of action: an experience which, as part of a protective strategy, attempts to defend one’s self in the presence of inferred threat.

So pain is there to help us maintain an intact sense of self in the presence of threat – threat that we’ve inferred from our context (or drawn a conclusion from incomplete data). It’s part of a system that works to maintain “us” in the face of multiple threats that we encounter.

Tabor, Keogh and Eccleston also argue that pain is an experience designed to intrude on awareness to show that “boundaries have been reached and action must be taken”. Pain is one way our mind/body can give us an indication of boundary – just how much, or how little, we can do. For example, I experience pain when I bend my thumb down to reach my wrist – it’s one way I can learn how far I can bend without disrupting something! The purpose of that pain is to help “me” defend against doing really dumb things, like stretching my thumb out of joint!

Interestingly, when we feel overwhelmed by our pain, when we can’t defend against it (because it feels too intense, has meanings that threaten our deepest sense of self) we tend to withdraw from responding to everything else – our conversations stop, we don’t notice other people or events, we pull into ourselves and ultimately, we can lose consciousness (think of the accounts of early surgery without anaesthesia – the surgeons were kinda grateful when the patient lapsed into unconsciousness because at last they weren’t writhing to get away – see Joanna Bourke’s book “The Story of Pain” for some harrowing stories!).

When we lose consciousness, our sense of self disappears. We lose contact with the “what it is to be me”.

Our sense of self also disappears when we experience pain we can’t escape and we can’t make sense of. Throughout the time while people are trying to label their pain, establish the meaning of their symptoms, and while people are searching for a solution to their pain, people’s experience of both time and “who I am” is threatened (Hellstrom, 2001).

To me, this is one of the primary problems associated with pain – and one we’ve almost completely ignored in our healthcare treatments. All our treatments are aimed at helping “get rid of the pain” – but what isn’t so often incorporated in these efforts is a way of engaging and rebuilding a resilient sense of self. So while the pain may ebb away, the “self” remains feeling vulnerable and threatened, especially if there’s any hint of pain returning.

What can we do better? Perhaps talk about what vision a person has of themselves as a “self”. Help them work towards becoming the “self” they believe they are – or at least helping them express the underlying values that their “self” has previously been expressing. That way perhaps people can find flexible ways to express that “self” – which will make them more capable of living well under any circumstances.

 

Baumeister, R. F. (1997). Identity, self-concept, and self-esteem: The self lost and found. Hogan, Robert [Ed], 681-710.

Bourke, J. (2014). The story of pain: From prayer to painkillers: Oxford University Press.

Eisenberger, N. I. (2015). Social pain and the brain: Controversies, questions, and where to go from here. Annual review of psychology, 66, 601-629.

Hellstrom, C. (2001). Temporal dimensions of the self-concept: Entrapped and possible selves in chronic pain. Psychology & Health, 16(1), 111-124. doi:http://dx.doi.org/10.1080/08870440108405493

Iannetti, G. D., Salomons, T. V., Moayedi, M., Mouraux, A., & Davis, K. D. (2013). Beyond metaphor: Contrasting mechanisms of social and physical pain. Trends in Cognitive Sciences, 17(8), 371-378.

Tabor, A., Keogh, E. and Eccleston, C. (2016) Embodied pain— negotiating the boundaries of possible action. Pain. ISSN 0304- 3959 (In Press)

On the value of doing, being and becoming


An old occupational therapy tagline was “doing, being, becoming”. The meaning of this phrase is intended to point to the tight relationship between what we do, who we are, and how we develop and grow. As I read blogs discussing an increased emphasis on “real world” outcomes there is something missing from the narratives: that intangible quality that marks the difference between colouring in – and painting. Or filling in a form – and writing a poem. Going from room to room – and dancing. Something about expressing who we are and what we value.

Values are things we hold dear. They are principles, or “desired qualities of behaviour”, life directions (not destinations).

The things we do (our actions) are inevitably infused with our values because how we do things (sloppily, carefully, neatly, with gay abandon, enthusiastically) is an expression of what we think is important. To give you an example, I occasionally vacuum my house. Sometimes I’ll do it really thoroughly – because I love seeing a sparkling house. Sometimes I’ll do it with a flick and a promise – because it’s a beautiful day and I want to get out of the house. In both instances I’ve expressed something about what is important to me – I do enjoy seeing my home looking tidy and organised. I don’t have to have reasons for liking my home this way, I just do. When I do a quick flick through my home it’s not because I’m lazy or I don’t care, it’s because I value getting out of the house more than I value having a tidy and organised home on that day.

Values don’t have to be explained. We don’t have to have reasons for holding them. They’re something we choose to place as important.

Why be concerned about values? Well, they underpin our choices. They provide motivation towards some activities, and away from others.

There is a lot of emphasis at the moment on people with osteoarthritis “getting fit” and “doing exercise”. The current approach in New Zealand is to provide community-based programmes to people who have just been declined joint replacement surgery (because we can’t offer surgery to everyone who wants it). Uptake hasn’t been enormous, and to be honest I’m not surprised. People who haven’t been exercisers are not very likely to begin an exercise programme that is undoubtedly going to increase their pain in the short-term (because, duh, movement hurts!) even if the programme offers hope of improved pain and function in the future. Putting this into a “values” and “motivation” perspective, people usually value comfort over discomfort. They value short-term outcomes over long. If they’ve never exercised much, it’s clear that exercise isn’t something they value. To help them engage in an exercise programme, we need to work hard to identify values they hold dear so they’ll look to those to over-ride the value of comfort over discomfort.

An alternative might be to think of different ways of expressing values that will concurrently meet the goal of increased exercise. For example, I don’t enjoy exercise per se. In fact I’ve boasted that my body is an exercise-free zone! To tell the truth, that’s not exactly the case. I just don’t do “exercises”. Instead I dance. I get out of my chair for five minutes every 20 minutes and go do something involving my whole body. I garden. I play with the dog. I go out in the kayak. I walk miles when I’m fishing.

Some people would argue that “there’s no evidence base for this” – but I think we’ve forgotten that exercises are simply a planned and repetitive form of moving our bodies because we don’t do that nearly as much in modern times as we used to even in the early 1900’s, let alone in stone-age times. I don’t think hunter-gatherers “do exercises” except as training for something like war or hunting (to increase skill).

Living life with chronic pain must become a lifestyle. And it needs to be a lifestyle that has some life to it – not an endless series of “things we must do for health”, unless “health” is a particular value. If life is just about “things we do for health” doesn’t that constantly remind people of what they don’t have? That they’re not healthy? Making them patients instead of people? For most people, to be healthy is a means to an end: they want to connect with family, express who they are, contribute to their society, love and be loved. If the person in front of us isn’t into exercise, it’s OUR job to work out what they value and connect what we think is important to what they think is important, or we will simply fail.

Some simple steps to identify values – try these out in the clinic!

  1. When a person attends your clinic, they’re expressing a value, that they care about something. Asking the person “what do you hope from coming to see me” is a pretty common opening line. Try extending this by, after they’ve answered, asking “why is that important to you?” or “what would it mean you could do” or “how would that make a difference to you?”
  2. If a person says they don’t like something, try suggesting to them that they value the exact opposite. eg if they’ve said they really don’t like running, ask them why: “it’s boring” might be the answer. This answer suggests they like variety and excitement in their exercise routine. Then you can ask them what activities they see as exciting – maybe instead of running, they’d enjoy virtual boxing (bring out the Oculus Prime!), or a scavenger hunt, or geocaching.
  3. Use the 1 – 10 “readiness ruler” technique from Motivational Interviewing. Ask the person to draw a line and put 1 at one end, and 10 at the other. 1 = not at all important and 10 = incredibly important. Then ask them to put a cross on the line to indicate the importance they place on doing exercise/healthy living/pain management (whatever you’re asking them to do). Then (and this is important!) ask them why they put that mark so high. This is important – even if that mark is down on 2!! Ask them why they put it there and not lower. This will help elicit important values that you can then use to connect what you want them to do with what they value.

End-of-year musings


It’s my last post for the year. It has been an extraordinary year, lots of surprises, shocks and enough excitement for anyone! I’m not even going to start on the political changes, here in NZ we’ve had yet another major earthquake, excitement as ACC (our national accident insurer) sets up new pain service contracts (with a LOT of people who haven’t been involved in pain management before… there’s an experiment in the making!), and continuing road cone carnage on the streets of Christchurch.

On the pain news front, I can’t think of any incredibly ground-breaking news – although one medic advised that “Virtually all cases of low back pain can now be diagnosed definitively by criterion standard methods as to source and cause.” That same medic also argued that a paper by Maher, Underwood & Buchbinder (2016) on non-specific low back pain, published in The Lancet, represented “the views of non-evidence-based troglodytes who (a) have apparently not read any scientific papers since 1966, and (b) have vested interests in “managing” non-diagnosed patients so their practices remain busy and they reinforce each other’s views that the burden of low back pain cannot be eased.” I’ll leave the critiquing of that view to those with more time and energy than I have!

It’s also been a year in which various commentators have critiqued the “biopsychosocial model” as it’s applied in musculoskeletal pain.  Some have pointed out that this is an unscientific model, it’s not a theory that can be tested and therefore can’t point to “truth” or whatever approximation we can currently identify. Others have argued that by adopting this framework, practitioners must either be versed in “life, the universe and everything” – or perhaps become exactly what advocates of this approach decry: reductionists. I’m not sure I follow this argument, but those that raise it are intelligent, articulate and far more thoughtful than those who believe that Maher, Underwood & Buchbinder are “troglodytes” or have “vested interests”.

I continue to hold that a biopsychosocial perspective explains more, and is of practical use when we consider the various factors that might influence why this person is presenting in this way at this time, and what might be done to reduce their distress and disability. Here’s my take.

Biopsychosocial model

When we look into the original biopsychosocial model, we need to understand the context in which Engel first developed it. He was a psychiatrist, and at the time psychiatry was under threat from psychologists in particular, who were strongly advocating that many mental illnesses were actually “problems of living”. Things like alcohol abuse, forms of mood disorder, relationship issues and the like were seen as disorders influenced by learning and environment rather than biology. Psychiatrists were perhaps on the way to being sidelined from the very area in which they claim expertise. Engel, influenced by general systems theory and cybernetics, proposed a way for psychiatrists to remain relevant: look at the person as part of a wider system in which each element in the system could influence and be influenced by the next. Engel used this approach as a way to frame conversations with the patients he saw – attempting to understand how and why they were seeking help, and especially, attempting to understand the person and his or her priorities. I think that’s admirable.

How the model has evolved since then is an interesting tale. I first encountered the model during my occupational therapy training, where it was a foundation to viewing people-in-context. It was presented as a bit old hat (I started training in 1979), and was replaced in my profession by Gary Kielhofner’s Model of Human Occupation. This model similarly draws on general systems theory, and argues for the relevance of volition and habits as well as capacity from a biological/performance stance to undertake occupation and of course, contexts such as environment which includes the social environment. MOHO incorporates much of what we consider to be biopsychosocial – in fact, occupational therapy as a profession is based on the idea that people actively engage in purposeful and meaningful activities (occupations) that are formed out of the affordances available to them by virtue of biology, psychology and social elements within an environmental context.

So what?

For a model, or theory, to have value it needs to offer something that existing models or theories don’t. It needs to be more parsimonious (make fewer assumptions), explain more (be more consilient), hold together with existing knowledge (cohere), and predict more (Thagard, 1978).

For a clinician, a theory must also be useful in terms of explaining why this person is presenting in this way at this time, and directing what can be done to reduce distress and disability. Why these questions? Because people actively make decisions to seek treatment. They evaluate their experience in light of their past experiences, prevailing community beliefs about the trajectory of their problem, family influences, and yes, legislative influences. These are possibly more important than the biology of their problem – because we’re not going to treat someone who doesn’t believe they have a problem!

As clinicians I think we need to ponder exactly what we consider to be “treatment”.

When my fracture is reduced and immobilised, that is “treatment” – but it’s not actually ‘healing’ my bones, it’s actually up to my body to do the work. What immobilisation does is create an environment in which my body can heal itself. But the problem of a broken bone is not “treated” just by immobilisation. Treatment has to include the rest of my recovery – and involve prevention strategies too. My recovery will need to include restoring function. And some of that restoration will be by guiding me through various movements that increase tissue tolerance as well as my confidence that my limb will support me. My recovery also has to include me understanding and learning from my experience – will I jump off that cliff again? Will I leave the toys all over the floor again? Will I walk on a slippery path again?

I think clinicians simply create an environment in which people can recover. And we need to go beyond measuring range of movement or strength to establish that recovery has occurred. Recovery isn’t just about returning to “normal” whatever that is. It’s about moving beyond this interruption and into new possibilities and new challenges. It’s really about being able to be who we really are. While that’s primarily the person’s own responsibility, our job as clinicians is to create an environment where it’s possible. While a biopsychosocial model/theory/framework makes life complex, using this approach allows us to be aware of more of the factors relevant to recovery and growth than simply looking at people as if they’re bits of meat, bone, and juice.

In the new year

I’ve been blogging since 2007. In that time I’ve written over a thousand posts all on the topic of pain. Almost all of my posts are on the theme of how we can remember that we are working with people. Other human beings who have their own thoughts, beliefs and priorities. Humans who make sense of their situation as best they can. People who, like us, hold cognitive biases, and feel emotions, and get stuck, and hold values. My real focus is on how we can integrate these things into clinical reasoning – because until we do, we’re ignoring what matters most to the people we seek to serve.

 

Engel, G. L. (1977). The need for a new medical model: A challenge for biomedicine. Science, 196(4286), 129-136. doi:10.1126/science.847460

Maher, C., Underwood, M., & Buchbinder, R. (2016). Non-specific low back pain.  The Lancet. doi:10.1016/S0140-6736(16)30970-9

Thagard, P. R. (1978). The best explanation: Criteria for theory choice. The Journal of Philosophy, 75(2), 76-92.

Ups and downs and rocking and rolling


What a week it has been! Not only an unexpected result in the US elections, but also a very large earthquake north of Christchurch, along with a tsunami alert for the entire eastern coastline of New Zealand. Luckily I live far enough away from the shoreline that I didn’t have to evacuate, but the sirens certainly work!

As a result of these events, which I firmly believe are NOT associated except in time, the post I was going to make seems a bit redundant, so I’m going to talk about resilience and what it really means.

For someone who has lived through thousands of earthquakes since September 2010, resilience is almost a dirty word. People living in Christchurch are a bit tired of being called resilient.  You see, it’s not the quakes that are the problem – it’s the aftermath. The “new normal” that we’ve been living through these past years. The thousands of road cones lining almost every street. The constant detours as bits of road are dug up and sewerage, storm water and water pipes relaid. The delays. The ongoing processing needed to work out “where am I?” in the streets we used to know so well.

Resilience is intended to refer to “bounce back”. The thing is, I don’t think we bounce back to exactly the way we were before – we’re irrevocably changed by all experiences, but especially ones as significant as the earthquakes, or even political changes. That we don’t “return to normal” is one of the main reasons I don’t believe reports of people “going back to normal” if pain is completely removed. Why? Because people actively process and make meaning from everything that happens to them – and the meanings that are given to experiences don’t ever completely go.  We know, for example, that we can’t “unwire” nerves that have fired together, so what actually happens is that alternative paths or connections between nerves are formed. This means that under the right circumstances, those original paths will fire again… And people who have experienced chronic pain will, even if their pain eventually goes, know exactly what that pain meant, how it affected them, and I’m certain will be very aware of any new pain that seems to be similar to the one that was just there.

Resilience to me is therefore not so much about “bouncing back” as it is about being able to take stock of what actually IS, determine the paths that lead on in the direction of important values, and then choosing to take those paths. And this can often mean taking detours because old paths aren’t negotiable any more. That can be, and is, disturbing. It can be frustrating, fatiguing and far more demanding than the idea usually invoked by the word “resilience”.

So, in the next days and weeks, let’s think less about being resilient, and more about being flexible – flexibly persisting, if you will. We need to persist to get anywhere, do anything. We need to be flexible about how we get there and how we do what we value. We’ll need passion, but more than passion, we’ll need commitment.

 

When do we need to say we’ve done enough?


This post is food for thought for both clinicians and people living with pain. It has come about because of a conversation on Facebook where some clinicians felt that people with pain are only being offered the option to “learn to live with pain” when their pain intensity could either be reduced or go completely.  And this conversation is one repeated countless times around the world when those living with persistent pain seek help for their disability and distress.

I’m going to declare my hand right now: I think a the problem in chronic pain management isn’t that people get offered “pain management” or “learning to live with pain” or “accepting pain” too often – I think it’s not happening often enough, nor soon enough. But let me unpack this a little more…

We know that in New Zealand at least one person in every six lives with chronic pain that has gone on for more than six months (Dominick, Blyth & Nicholas, 2011). We also know the seven day prevalence of low back pain in New Zealand is 35% (men) and 48% (women) (Petrie, Faasse, Crichton & Grey, 2014).

Treatments for painful conditions abound. From the simple over-the-counter approach (medication, anti-inflammatory creams, hot packs, cold packs) to hands-on therapies (massage, osteopathy, chiropractic, physiotherapy), to exercise therapies (Pilates, core strengthening, gym programmes, spin classes, walking, exercise in water), and finally to the multitude of invasive therapies (injections, neurotomies, decompression surgery, fusion). There is no shortage of treatments that aim to get rid of pain, fix the problem and get life back to normal. And for the most part these treatments provide modest improvement in both pain intensity and functional gains. For low back pain it seems there is no single wonderful treatment that works for everyone – hence the proliferation of treatments! (cos if there was a single treatment that worked, we’d all be offering it – like we do with a broken bone or appendicitis).

Here’s a question: if pain “management” (ie helping people learn to live with their pain) was the main offering to people living with pain, wouldn’t there be a heap of places to get this kind of treatment? At least in New Zealand there are relatively few pain management centres although there are many, many places to go for pain reduction.

I’ve tried to find studies looking at how people are told they have persistent pain that won’t be cured. Strangely, I have had incredible difficulty finding such studies. They may be there in the research literature – but they’re fairly uncommon and hard to find. And given how poorly low back pain guidelines are followed despite being promulgated since at least 1997, even if there were studies examining the best way to convey this news, I’d be surprised if anything was routinely incorporated into clinical practice.

So, in my opinion there are many more clinicians offering to help reduce pain than there are those offering to help people “learn how to live with pain”.

I was asked recently “when you do decide to stop pursuing pain reduction?” I think I said “it’s ultimately the decision of the person living with pain” – but it’s complicated by the way we as a culture perceive this option. I think most people would be horrified to think “I’m going to have a lifetime of living like this” when our beliefs about pain are influenced by and attitude that “pain = suffering”, “pain is unnatural”, “pain is a sign of something badly wrong”, “pain is something to get rid of”. I know when I was told “I’m sorry but there’s nothing more we can do for your pain” I was terribly upset thinking I had a lifetime of feeling awful to look forward to! I was 22 and had low back pain that would not go away after 18 months. I’m now 52 and I still have pain – but I can tell you that I have done almost everything I’ve wanted to including SCUBA diving, tramping, fishing, dancing, working full time (overtime), and parenting.

When do we begin to think about living with pain rather than curing it? I think we need to take a hard look at what this sentence means.

Firstly it means living. Life continues whether we’re feeling like we’re moving forward, or we’re putting things on hold to pursue a particular goal. Life doesn’t actually stop – but the things we want to experience, the things we want to do change over time. Our focus at the age of 22 is quite different from our focus at age 52 – and I hope it will change again at age 82! We don’t get to hit the replay button and live life all over again. We get one shot at it. This could feel quite awful if we’re contemplating a life where looking for pain relief is our primary goal – especially when that process involves an endless round of hope then despair as treatments are tried – and then don’t quite work out. Even the process of looking for treatments is slow, fraught with anxiety, and it eats up time in a week. For me, taking time out from living to pursue a treatment that may work means a process of weighing up the costs against the benefits. The costs include time, energy, emotional investment in the result, and the discomfort of the treatment itself. The benefits? Well, that depends.

The second part of that sentence is “with”. Living with pain. To me this means establishing my willingness to experience something I don’t enjoy – and believe me, I’m not a fan of pain! If all I have to look forward to is pain, pain, pain I’m not keen on doing it. BUT I am keen on living and bringing pain along with me (because frankly, my pain is coming along for the ride anyway). Living with pain to me means making room to experience pain fluctuations while doing things that bring value and meaning to my life. It means I ache – but I have a beautiful garden. I have sore legs – but I’ve been dancing. I have an aching back and neck and arms – but my house is clean. Here’s the thing: even if I didn’t work in my garden, dance or clean my house I’d STILL be sore! And I’d be bored, feel like I hadn’t achieved anything, and would have had to ask other people to help because many of those things still need doing.

The thing is, pain ≠ suffering.

When do we make a decision to stop pursuing pain reduction? Well, if I’m honest I’m still on the lookout for something that will help reduce my pain. And I think anyone who does live with persistent pain would agree that we don’t really want to have this experience, just like people who have cancer don’t want it, or diabetes or stroke or any of the myriad other chronic conditions humans are prone to getting, especially as we age. When asked, I’m sure most people with chronic pain would say “Yes” to pain reduction as a goal. BUT, and this is important, living life as fully and richly as we can is just as important.  I would bet that anyone with any of those chronic conditions would also just love to have them cured too.

But pain is a funny thing, there are myths and unhelpful beliefs coming from clinicians and our cultural norms about pain being a bad thing that must go. Compared with the beliefs and attitudes about other chronic conditions, this is unhelpful. We don’t find health professionals constantly pursuing treatments to “get rid of” diabetes, the focus is on management. And we accept that people who have cancer may choose to no longer accept treatment – and we support them by providing good hospice care. How often do people with chronic pain get (a) support to make a decision to live with their pain and (b) support to learn to do this well without feeling like second class citizens who have failed. We even have a group of clinicians calling people who haven’t responded to their treatments “failed back syndrome” as if the person’s back has failed rather than the treatment failing.

What makes me decide to pursue a new treatment that promises to reduce my pain? Well, it has to fit into my life. It can’t interfere with what’s important to me in terms of time, energy or discomfort. The odds need to be pretty good for me to even look at it – I want to see more than a single research paper showing its effectiveness. I would have to trust the clinician, and they’d have to respect me and my lifestyle and priorities. I’d want to make sure that clinician was going to stick with me and help me decide whether it’s worth doing. I’d want to see that the treatment would help me achieve my goals and priorities – otherwise I’m not really interested.

Is this because I’m weird (say yes!)? Or that I have less intense pain than other people? (nope, because you can’t compare my pain with anyone else’s, and because pain intensity ratings are strongly influenced by distress, mood, anxiety, how much pain interferes with life, attention, culture yada yada yada (Linton & Shaw, 2011). I think it’s because right now I’m too busy living, I get more joy and satisfaction from doing things that make me feel like myself. But remember I’ve been doing this since I was 22. And it’s a process. And I’m weird. I am a pain geek.

The thing is, unless clinicians promote living well with pain as an equally valid option to trying to get rid of it, people will continue to think that it’s impossible to have a really good life unless their pain is gone. And that, to me, is a tragedy, because we only have one life to live.

 

Dominick, C., Blyth, F., & Nicholas, M. (2011). Patterns of chronic pain in the New Zealand population. New Zealand Medical Journal, 124(1337), 63-76.

Linton, S. J., & Shaw, W. S. (2011). Impact of psychological factors in the experience of pain. Physical Therapy, 91(5), 700-711. doi:10.2522/ptj.20100330

Petrie KJ, Faasse K, Crichton F, Grey A. How Common Are Symptoms? Evidence from a New Zealand National Telephone Survey. BMJ Open. 2014;4(6). doi: 10.1136/bmjopen-2014-005374.

Clinical reasoning “think aloud”


Occupational therapists are keen on helping people return to doing the things they value – meaningful activity, or participating in valued occupations (same thing, essentially). So, a person might come to see me because they have low back pain and want to work out how to get to work.

My first step is to understand what it is about the back pain that seems to be stopping the person from doing the tasks involved in their work. I usually begin by taking a history – what does the person understand about how their back pain came on, what’s their theory as to why it’s there, what have they done to help their recovery, how are they managing the everyday things they need to do right now. I ask about sleep, sex, personal care, daily routine, and in doing so I’m finding out about the person’s beliefs and attitudes towards their pain, their ability to regulate their arousal level, their mood, their confidence, the influence of others around them (both supportive – and those more subtle influences like their response when the person does something). I’m very careful to try to understand the contexts in which the person is having trouble – and what factors in the context might be supporting change.

In my mind I’m trying to establish a set of possible reasons for this person coming to see me at this time and in this way. I’m running through the various influences I know affect a person’s ability to engage in normal daily activities. Because I have a strong psychology background, I’ll consider functional behavioural analysis, but I’m also sensitive to personal values, cultural norms, and yes, even biological factors such as strength, range of movement, and motor control.

I can try to influence two things: the demands of the tasks in the context of work, and the capabilities of the person, but I need to keep a couple of things in mind.

  1. What is the effect of my intervention in the medium to long-term, not just the short-term?
  2. What does this person need in this context right now?

Depending on my clinical formulation, and the overall theoretical model I’m using, I can approach the decision-making in many different ways. As you’ve probably guessed, I’m a fan of Acceptance and Commitment Therapy, so my end goal is to help this person develop the ability to respond flexibly to the demands of any situation. I want to keep in mind that what I do now can have a long-term influence on what they’ll do over time. Some occupational therapists may instead focus primarily on “what will solve the problem for this person right now” without always thinking about the long-term impact.  As a result, we can see some people with low back pain being given special seating, perhaps a new bed, some adaptive equipment so they can achieve the goal of “doing” – but at the same time, being unaware of the constraints this can put on the person being able to participate in other contexts.

For example, if my client is having trouble getting to work because he thinks his car’s seat should be fixed. If my focus was purely on helping him drive his car in comfort, I could consider assessing his car and giving him some cushioning to make it more supportive. There, problem fixed! But, let’s take a look at the effect of that intervention in the medium term. While he can drive to and from work, he’s learned that he “needs” a special seat or cushioning to help stop his discomfort. He’s also learned that his back pain is something he “shouldn’t” experience.

Based on what he’s learned from my intervention, what do you think can happen if he continues to experience back pain in the work setting?

His personal model of pain will have developed a couple of interesting quirks (and ones we often see in clients) – he’s learned that posture influences his back pain, and that there is a posture that “fixes” it. He’s learned that he should have his back in a particular position to be comfortable. He’s also learned that because he can influence his sitting position in the car, he “should” be able to influence his sitting position in other contexts – like, perhaps, his office desk or the seat in his digger. He might even, if his belief that his back “should” be in a particular position is especially strong, begin to try to keep his back in this position while doing other activities like walking or carrying things, or using tools. Most insidiously, he has learned that his back pain is something he should not have. It’s a sign to him that he has to “fix” his sitting position or he’s doing something wrong. But back pain is common, many factors influence it, and it often doesn’t settle completely.

If I instead want him to be able to respond flexibly to many different settings, I’ll need to think more carefully about my intervention. My underlying reasoning has to capture the workability of any suggestions I make – and workability not just in the car while driving, but at work, while doing other tasks, at other times.

I may work together with him to find out what it is about the pain in his back that particularly bothers him. Pain itself is usually not the problem – it’s what the pain represents, the effect on doing things both here and now, and in the future. In my client’s case, perhaps his back pain is particularly frustrating for him because he values getting to work and feeling ready for anything. He doesn’t want to feel like his goals are being blocked (he doesn’t want to feel exhausted and not ready for work), he doesn’t want his back pain, and his mind is telling him he needs to be “ready for anything” even though he is in the middle of a bout of back pain. In ACT terms, he’s avoiding the negative feeling of frustration, of potential failure, of feeling exhausted and his back pain, and he’s doing what all humans do – trying to control those emotions so that he doesn’t feel them! Makes perfect sense – except that the solution (giving him a cushion for his vehicle) could pose its own problems.

I can position my intervention in a couple of different ways. Honouring the value he places on being ready for anything at work, I can talk to him about how well that’s working for him right now, given he’s having a bout of back pain. Could he be willing to allow himself to be less “ready for anything” while he recovers from his back pain? I could also suggest that he could take the time to be present to his back pain, to be aware of and experience his back – and his feet, arms, shoulders and breath – while driving to work, so that he can notice the times when it’s really bothering him, and when it bothers him less, and that along with his back pain he also has areas of comfort and strength. I could provide him with a cushion – but ask him to think about what happens when he has to sit in other chairs, and ask about the workability of carrying a cushion wherever he goes.

The point is that while occupational therapists can help people do the things they want and need to do, some of our efforts can constrain people’s options over time. We don’t live the lives of our clients – but sometimes we can assume the client’s priority is to solve an immediate problem, while overlooking the other competing values the person also holds dear.

I’ve included some readings that have informed this blog post – while they’re not directly referenced in my post, they help inform my clinical reasoning.

Damsgard, E., Dewar, A., Roe, C., & Hamran, T. (2011). Staying active despite pain: Pain beliefs and experiences with activity-related pain in patients with chronic musculoskeletal pain. Scandinavian Journal of Caring Sciences, 25(1), 108-116. doi: 10.1111/j.1471-6712.2010.00798.x

DeGood, Douglas E., & Cook, Andrew J. (2011). Psychosocial assessment: Comprehensive measures and measures specific to pain beliefs and coping. Turk, Dennis C [Ed], 67-97.

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