Why are there not more occupational therapists in pain rehabilitation?

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

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

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

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

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

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

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

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

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

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

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

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

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

Three letter acronyms and what they mean – CBT, DBT, CFT, ACT – not alphabet soup!

Once you begin to dip your toes into psychological therapies, it doesn’t take long before you begin to see TLAs all over the place. So today I’m going to post on two things: some of the TLAs, and why or how we might consider using these approaches in pain rehabilitation.

The first one is CBT, or cognitive behavioural therapy. CBT grew out of two movements: behaviour therapy (Skinner and the pigeons, rats and all that behaviour modification stuff), and cognitive therapy (Ellis and Beck and the “cognitive triad” – more on this later). When the two approaches to therapy are combined, we have cognitive behavioural therapy where thoughts and their effect on emotions and actions are the focus of therapy, with a secondary focus on behaviour and how behaviour can be influenced by (and influence) thoughts and emotions.

In pain rehabilitation, cognitive behavioural therapy is used primarily by psychologists, while a cognitive behavioural approach is what underpins most of the multidisciplinary/interprofessional pain management programmes. These programmes were very popular and effective during the 1980’s and 1990’s, but have faded over time as insurers in the USA in particular, decided they were expensive and should instead be replaced by what I call “serial monotherapy” – that is, treatments that were provided in a synthesised way within interprofessional programmes are often now delivered alongside or parallel to one another, and typically with very limited synthesis (or case formulation). A question yet to be answered is what effect this change has had on outcomes – my current understanding is that the outcomes are weakened, and that this approach has turned out to be more expensive over time because each discipline involved is seeking outcomes that fit with their priorities, and there is far more opportunity for duplication and gaps in what is provided.

Cognitive behavioural approaches underpin the “Explain Pain” or pain neurobiology education approach. The theory is that people who hold unhelpful beliefs about their pain can become fearful of what the pain means. Once they hold more helpful or realistic beliefs about their pain, that emotional zing is reduced, and it’s less scary to begin moving.

Cognitive behavioural approaches also underpin cognitive functional therapy. In cognitive functional therapy, as a person begins to move, the therapist asks about what’s going through their mind, and establishes through both movement experiments and information, that they’re safe to move, and can do so without fear (O’Sullivan, Caneiro, O’Keeffe, Smith, Dankaerts, Fersum & O’Sullivan, 2018).

When carrying out graded exposure, in the way that Vlaeyen et al describe, a cognitive behavioural approach is integral. In this approach, the classic relationship between avoidance and a stimulus (bending forward, for example), is challenged in a series of behavioural experiments, beginning with movements the person fears the least, and progressing over time to those the person fears the most.

There’s good evidence from psychological therapies, and also from within pain rehabilitation research, that it’s the behavioural aspects of therapy that do the heavy lifting in pain rehabilitation (Schemer, Vlaeyen, Doerr, Skoluda, Nater, Rief & Glombiewski, 2018).

And, in the words of Wilbert Fordyce, psychologist who first started using a behavioural approach for persistent pain management “Information is to behaviour change as spaghetti is to a brick”.

So don’t expect disability (which involves changing behaviour) to shift too much without also including some strategies for helping someone DO something differently. And if a person doesn’t accept what you’re telling them – sometimes it’s more effective to try helping them do things differently first, and use that experiential process rather than talk, talk, talking.

ACT (acceptance and commitment therapy), and DBT (dialectical behaviour therapy) are both what is known as “third wave” cognitive behavioural therapies. They both involve understanding the relationship between thoughts, emotions and behaviours, but add their own flavours to this. In the case of ACT, the flavour that’s added is “workability” and contextual behavioural analysis, with relational frame theory as the underpinning theoretical model. Instead of directly tackling the content of thoughts, ACT focuses on changing the relationship we have with thoughts, and shifts towards using values as directing the qualities of what we do (McCracken & Vowles, 2014). Dialectical behavioural therapy helps people build social relationships that support them, begin to recognise strengths and positive qualities about themselves, recognise unhelpful beliefs about themselves and shift towards more helpful beliefs, and to use coping strategies to help soothe and calm emotional responses. I draw on ACT as my primary framework for pain rehabilitation (actually for my own life too!), but I haven’t seen as much use of DBT in this area.

Compassion focused therapy, the other CFT, is also a psychotherapy designed to help people become compassionate towards themselves and others. The theory behind this are understanding three main “drives”: the threat and self-protection system, the drive and excitement system, and the contentment and social safeness system. When these are under-developed, or out of balance, unhelpful behaviours and unhappiness occur. CFT aims to help people bring the three systems into balance. Given that many of the people who experience persistent pain have also experienced early childhood trauma, and concurrently endure stigma and punitive responses from those around them because of their pain, CFT offers some strategies to help effect change on an unsettled and fearful system. CFT uses self appreciation, gratitude, savouring, as well as mindfulness (non-judgemental awareness), and compassion-focused imagery to help soothe the system (Penlington, 2019; Purdie & Morley, 2016).

Along with these TLAs, you can also find many others. I think for each approach, understanding the theory behind them is crucial. While some of these approaches appear very “psychological”, whenever we begin unpacking them, we can start to see how most of what we offer in physical or occupational therapeutic approaches require us to draw on them.

Skills like guided discovery, motivational interviewing, goal-setting, values clarification, graded activity, helping people experience difference in their own lives, soothe their own body, become more comfortable with a sense of self that has to grapple with pain – unless we’re knocking our patients unconscious, we’re going to be using these so-called “psychological” skills.

If we are doing good therapy, I think we need to be as excellent as we can in all the skills required. This includes being excellent at the way we thoughtfully and mindfully use communication.

Psychological therapies all incorporate communication, and responses to people who are fearful of something. Most of us are involved in helping people who are afraid of their pain – and as a result are not doing what matters to them. If we don’t help people do what’s important in their lives, what on earth ARE we doing? For this reason, we need to employ the most effective tools (ie psychological approaches) in just the same way we use goal-setting (psychological), respond with encouragement to someone attempting a new thing (psychological), start with something the person can only just do, then grade it up (psychological), help down-regulate an overly twitchy nervous system (psychological), teach new skills (uh, that’s quite right, psychological!). I could go on.

What don’t we do if we’re using psychological strategies? We don’t dig into deep trauma, substance abuse, criminal behaviour, self harm, psychopathology. Though, we do address some psychopathology if we recognise that depression and anxiety both respond quite nicely to scheduling positive activities, and meaningful movement (ie exercise). Perhaps our artificial divide between “physical” and “mental” needs to be altered?

McCracken, L. M., & Vowles, K. E. (2014). Acceptance and commitment therapy and mindfulness for chronic pain: Model, process, and progress. American Psychologist, 69(2), 178.

O’Sullivan, P. B., Caneiro, J. P., O’Keeffe, M., Smith, A., Dankaerts, W., Fersum, K., & O’Sullivan, K. (2018). Cognitive functional therapy: an integrated behavioral approach for the targeted management of disabling low back pain. Physical therapy, 98(5), 408-423.

Penlington, C. (2019). Exploring a compassion-focused intervention for persistent pain in a group setting. British journal of pain, 13(1), 59-66.

Purdie, F., & Morley, S. (2016). Compassion and chronic pain. Pain, 157(12), 2625-2627.

Schemer, Lea, Vlaeyen, Johan W., Doerr, Johanna M., Skoluda, Nadine, Nater, Urs M., Rief, Winfried, & Glombiewski, Julia A. (2018). Treatment processes during exposure and cognitive-behavioral therapy for chronic back pain: A single-case experimental design with multiple baselines. Behaviour Research and Therapy, 108, 58-67.

Toye, F., & Barker, K. (2010). ‘Could I be imagining this?’–the dialectic struggles of people with persistent unexplained back pain. Disability and rehabilitation, 32(21), 1722-1732.

Veehof, M. M., Trompetter, H. R., Bohlmeijer, E. T., & Schreurs, K. M. G. (2016). Acceptance-and mindfulness-based interventions for the treatment of chronic pain: a meta-analytic review. Cognitive behaviour therapy, 45(1), 5-31.

Flare-ups and how to handle them

If you live with persistent pain of any kind, you’ll know what a flare-up is. Periods of time when pain is exacerbated and sustained at a higher than average level over at least a few days, often longer. Flare-ups always settle down – but oh my, it can feel like they’re going on forever!

Handling a flare-up is not quite the same as handling everyday pain. Everyday pain, for those of us who manage it independently of healthcare professionals, usually needs a generally steady routine, not too many surprises. A regimen of movement, relaxation, fun, mindfulness, plodding on and managing stress. A little boring, if you will. Most people will add or subtract some medication (if there is some to help) and vary the activity level depending on the demands of the day.

But when a flare-up happens, some people can find themselves side-swiped and confidence can plummet, while the usual everyday coping can feel like it’s not quite cutting it. For some people, it can be a complete surprise to find that on one day everything feels “normal” yet the next can be a flare-up.

What health professionals do during a flare-up is important, because how we respond and our attitude towards flare-ups can build confidence, or knock it even further.

Identify your early warning signs

Even though a flare-up can feel like it’s come from out of the blue, mostly there are early warning signs that perhaps haven’t quite been recognised (or have been ignored because something else is more important than pain intensity). It can be a period of feeling really good (so that the normal coping strategies don’t feel quite as relevant, and are just a bit easier to forget to do). It can be fatigue, or feeling a little overloaded. It can be a rotten night’s sleep, or a really busy day without the normal recovery time.

An early warning sign can be being more achey than normal, a little stiff and less keen to move. For some it can be feeling a little irritable, or a little down.

There may be parts of the body that don’t typically get sore – but during a flare-up, they begin to join in the action. The quality of the pain may be different: burning, deeper, achier.

Noting these “flare-up early warning signs” in a diary can be a great way to develop an alert system to remind us to focus on keeping on with the strategies that we’ve found useful – like a reminder not to suddenly stop what’s working!

Rescue Remedy

No – I don’t mean the drops you can get! Please no!! The rescue remedy I advocate is to develop a set of strategies, a plan, that is written down ahead of when it’s needed. During a flare-up, thinking straight can be difficult, so pre-planning can reduce the effort at the time.

I always begin by developed a “Can Cope” card. This is a business-card sized card with four or five simple steps that can be used immediately and may even abort a flare-up before it begins. The first instruction is always “Breathe out!” followed by using a calming word like “relax” or “I’m fine” or “chill out”. Three to five out breaths can help to interrupt stressful thinking, enough to move on to the next step that I pretty much always include: notice. Noticing in this instance is a few minutes of body scanning to notice just what is happening in the body in the here and now. A body scan allows an opportunity to recognise where any additional tension is held, to notice and stop rushing if that’s part of the problem, to simply be for a moment or two.

I then like to include a few actions like get up and stretch, or go grab a drink of water, something that allows for some whole body movement – maybe a walk around the block. And finally, I end the Can Cope Card with a reminder that these flare-ups do end!

Working out why it happened

It’s tempting to try and find out what went wrong and why a flare-up happened, but it’s not uncommon to be unable to put a finger on it. So many variables are likely to influence! As I mentioned at the start of this blog, it can be a night of rotten sleep, a busy day, maybe a change in routine, feeling overloaded, maybe even having had a period of feeling really good.

If flare-ups don’t trouble the person very much, analysing how and why it happened may be counter-productive. It’s common for us to think firstly about movements or activities that are out of the ordinary, or perhaps more demanding than normal. These are the easiest flare-ups to identify. They can even be predicted, so can be built in to the weekly planning.

Other contributors can be much more difficult to identify – especially those involving emotional factors, stress, or enjoyable activities. For me, sitting for long periods, as in a conference, or travelling to a conference can be a flare-up initiator. Holidays not so much, but it’s not uncommon for me to feel sore in the days before heading away on holiday – all that rushing around, getting things ready!

Often it can be a cumulative series of seemingly irrelevant decisions. A whole cascade of tiny changes to routine that eventually tips the balance over – maybe working late a few nights in a week, combined with not as much time for exercising, and little more stress at work and not doing mindfulness or taking time out. On their own, they don’t seem much – but they erode the reserves needed to deal with pain on a daily basis.

If pain flare-ups like this do bother the person (or you!), it’s worth taking some time to track activities and mood, fatigue, sleep, and habits for a while. Simply tracking can be enough of a reminder to keep the habits going! But analysing what happens to energy, pain, mood can mean better capability for preparing and noticing in advance. That way, while a flare-up can be on the cards, gradually the person can get better at predicting what things set it off, and can make an active choice about whether it’s worth doing.

Health professionals

If we aim to prevent flare-ups, we’re on a hiding to nowhere. While there’s not a lot of research about on flare-ups, what research there is shows that flare-ups are common – 51% of people interviewed by telephone, all of whom had chronic low back pain, reported flare-ups (Suri, Saunders & Von Korff, 2012). It may be a matter of language: flare-ups can be called “breakthrough pain” (although this applies to cancer pain, when pain ‘breaks through’ the opioid dose, and shouldn’t be applied to noncancer pain); flare-ups can be called relapses or exacerbations or fluctuations. Whatever they’re called, there just doesn’t seem to be much in the research literature although qualitative studies do seem to show flare-ups as important.

If flare-ups are common, what are we doing as health professionals, to help people with pain learn to roll with the fluctuations? I think this depends a great deal on our own fears about pain. If we feel uncomfortable about pain, worry that our patients are “doing harm”, or feel concerned that they may get distressed because of pain, we may inadvertently convey this to them. We may try to dig deep into what may be causing the flare-up, we may ask the person to stop doing things, or alter their programme to prevent the flare-ups from “getting worse”. Or we may simply avoid discussing them at all. None of these approaches seem helpful to me.

I think (yep, opinion time!) that we need to convey our confidence that this person has the skills, capability and confidence to manage this themselves. I think it’s useful not to rush in to try to “fix” the problem, or to help the person out too quickly. This doesn’t convey the message that we are confident they can manage! It doesn’t mean ignoring the person, but it does mean we might want to think about asking the person what they can do to get through. And we can let people know how good it is that they’ve come in to see us even though it’s a high pain day. We can remind people of the skills they have and think of asking them which options they’d like to use. This might sound contradictory after I’ve just said not to rush in to “fix”, but to me the difference is that in one we’re supplying the answers and doing to, but in the latter we’re reminding people and giving the choice back to them.

I also think it’s worth avoiding analysing all the possible contributors, at least initially. Why? Because our temptation will probably be to focus on movements or activity changes that “caused” the flare-up, but it’s probable that many tiny decisions, multiple factors are the real issue. And if we focus on physical factors, we’re conveying yet again that pain is a problem of “the physical” – which may not be the case.

I’ve often said that if someone hasn’t had a flare-up while we’ve been working together, then I haven’t done my job. Flare-ups are part of living with persistent pain, and learning to roll with them is a skill I think everyone who lives with persistent pain can develop. Even though I know it’s difficult. But as people with persistent pain know, we are tough!

Suri, P , Saunders, & Von Korff, M., (2012). Prevalence and Characteristics of Flare-ups of Chronic Nonspecific Back Pain in Primary Care: A Telephone Survey. Clinical Journal of Pain, 28(7), 573-580.

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.

Having The Conversation…

Over the past few weeks I’ve been posing some of the curly questions that I don’t think have yet been answered in pain rehabilitation. In fact, some of them have yet to be investigated in any depth. Today I’m stepping out into the abyss to offer my current thoughts on one question that has been rattling around for some time: how do we have a conversation about pain and its persistence? I want to begin by stating very emphatically, that I do believe pain can change. And that the way a person views or interprets their experience can change, and there is reversibility in pain intensity and quality. Having a conversation about persistence doesn’t mean pain will inevitably hang around. So why talk about it?

One major reason comes from people living with pain. In a recent book (Meanings of Pain) I quoted several qualitative studies where “pain acceptance” and conversations about this were highly valued by people with pain – in fact, in my own research, learning that pain would either likely remain in its current form, or would be a feature in some way, was part of a turning point (Lennox Thompson, Gage & Kirk, 2019). The turning point was away from pursuing pain reduction as a primary goal, and towards living a life. “And then I finally said to myself, nothing’s going to work. I might as well try to live with it, and learn to live with it, and since then I haven’t tried pursuing any type of pain relief” (Henwood, Ellis, Logan, Dubouloz & D’Eon, 2012), “All the previous treatments dealt with taking
away the pain. This is the first time one gets a treatment that focuses on acceptance of the pain, and you really understand that this is chronic pain that will never disappear; it’s the first time one has received the message from this angle”
( Pietilä, Stålnacke, Enthoven, Stenberg, 2018)

I guess I don’t see this as a dichotomous choice. It’s not simply “pain reduction” OR “pain acceptance”. I think we can have more than one goal. It’s a matter of emphasis, where energy gets spent. Mark Sullivan and Betty Ferrell argue that health professionals need to reconceptualise their contribution to health: is it to treat disease, or to “advance the person’s capacity for personally meaningful action?” (Sullivan & Ferrell, 2005).

The issue is, that doing what matters can mean “doing what matters provided that pain isn’t present”, or “doing what matters provided that pain has gone”, or “doing what matters provided that it feels good”.

Back to the conversation. The purpose of the conversation is to allow some wiggle room around the “provided that”. Because, in the pursuit of pain reduction life can pass by. Jobs go, relationships fail, kids grow up and leave home, expertise and capability become obsolete, mates develop new pursuits and meanwhile, as people living with persistent pain have said, they’re living in “limbo land”. Reconnecting with values-based activities as one way to feel more whole again often means navigating the meaning of pain fluctuations. It can mean developing ways to allow pain to be present without trying to change the experience, or escape the experience.

Guiding the conversation

I routinely use guided discovery as my main form of therapeutic communication. My approach to The Conversation is to begin by finding out about the person’s theory of their pain – what do they think is going on? What have they been told and what sense have they made of this? What has it been like to have this experience bring attention to daily movements and activities? How are they going about daily life? What’s helped, what hasn’t? What have they given up? What new things have they had to do? What’s that been like?

I usually jot down the good and not so good of all of this – it helps to have a record both for the person and for me. I like to reassure people that they’re doing their very best in what can feel like an unrewarding endeavour. I also explore the impact of treatments on the person. What is it like to take medications, do exercises, have to make time to attend appointments? What is it like to tell one’s story to so many people – who often don’t reciprocate?

Drawing from both my clinical experience and from what I’ve learned about ACT (Acceptance and Commitment Therapy), I offer people a chance to reflect on the impact of not only pain, but also the process of getting treatment. On the work that goes into rehabilitation. I ask them what sense they make of life at the moment. What do they take from all of this?

And in that moment I also ask about what’s important in life. What matters. And how well is that person able to do at least something of what matters in their life? And is it possible to move towards doing more of what matters in life even in the presence of pain? And what sense does the person make of all we’ve discussed?

If I’m asked about whether pain will go, I am open about the possibility that it will not completely vanish. This reflects my understanding of neuroscience, the many many studies into all kinds of treatments, and from the words of people in qualitative studies who indicate that this is an important acknowledgement. I’m also not suggesting that anyone stop participating in pain reduction efforts, not at all. It’s not my decision. It’s never our decision – it’s the person with pain who must decide. I will point out, though, that I don’t think living well with pain is often offered to people as a positive option. It’s often delivered as “well if this doesn’t work, you can try doing some pain management”. Not exactly a ringing endorsement. Not even a neutral suggestion.

The Conversation isn’t about stopping treatment. It’s not about pain reduction vs pain management. It’s not about pain persistence as much as it is about ensuring rehabilitation focuses on what matters to people. For rehabilitation is not about eradicating the disease that caused the problem, it’s about restoring and optimising capabilities, enabling people to participate in their own lives as much as possible. Sometimes, in the pursuit of restoring capabilities, perhaps participating in life is forgotten.

Henwood P, Ellis J, Logan J, Dubouloz C-J, D’Eon J. Acceptance of chronic neuropathic pain in spinal cord injured persons: a qualitative approach. Pain Manag Nurs. 2012;13(4):215–22.

Lennox Thompson B, Gage J, Kirk R. Living well with chronic pain: a classical grounded theory. Disabil Rehabil. 2019:1–12.

Pietilä Holmner E, Stålnacke B-M, Enthoven P, Stenberg G. The acceptance. J Rehabil Med. 2018;50(1):73–9.

Sullivan, Mark, & Ferrell, Betty. (2005). Ethical Challenges in the Management of Chronic Nonmalignant Pain: Negotiating Through the Cloud of Doubt. The Journal of Pain, 6(1), 2-9.

There are two of us in this…

Today’s post is another one where there’s very little to guide my thinking… Have you ever wondered why we read so much research looking at the characteristics of the people who look for help with their pain – yet not nearly as much about us, the people who do the helping?

There are studies about us – thanks Ben – and others! (Darlow, Dowell, Baxter, Mathieson, Perr & Dean, 2013; Farin, Gramm & Schmidt, 2013; Parsons, Harding, Breen, Foster, Pincus, Vogel & Underwood, 2007). We know some things are helpful for people with pain: things like listening capabilities (Matthias, Bair, Nyland, Huffman, Stubbs, Damush & Kroenke, 2010); empathy (Roche & Harmon, 2017); trustworthiness (Sessa & Meconi, 2015); goal setting (Gardner, Refshague, McAuley, Hubscher, Goodall & Smith, 2018).

We also know that clinicians who are themselves fear-avoidant tend to avoid encouraging people to remain active, tend to recommend more time off work and more analgesia (see Farin, Gramm & Schmidt, 2013; but also Bartys, Frederiksen, Bendix & Burton, 2017). We also know there is very little investigation of our behaviours and attitudes (Henry & Matthias, 2018). It’s not a sexy area of study, sadly.

So, today I want to point out that there are two of us in a clinic room: yes, the person with all their concerns, catastrophising, depression, avoidance and psychological inflexibility, but we are also in the room. Just as we know couples will vary their behaviour in response to words and actions (Ballus-Creus, Rangel, Penarroya, Perez & Leff, 2014; Cano, Miller & Loree, 2009), I’m pretty certain that the same things happen between a clinician and a person with pain.

What if our attitudes towards pain made a difference? (we know it does). What if underneath our talk of helping people with pain lies a shadow-land where actually we are afraid of pain and distress, where we sincerely believe that it’s unethical to allow people to feel pain and distress because it makes us uncomfortable? And if we are uneasy with another’s distress, or if we are uneasy with another’s presumed distress (because we would be distressed in their place), what might this mean for our approach to pain rehabilitation?

We all think we’re being person-centred in our treatment, I’m sure. Yet at the same time, I think there’s a risk of failing to look at our own blind spots. One of these is our motivation to help. Why do we work in this space? Is it out of a hero complex? To be “the one” who can find the cause, fix the problem, reduce the pain and have a happy patient? Is it out of a desire to be loved? Or because it’s an endlessly fascinating area with so much new research and so much complexity?

What if we have to have a hard conversation? What if our conversation confronts OUR belief that pain is bad, that all pain can change if we just try hard enough and avoid “nocebic language”? In the face of seeing people who have done all the therapies, been the model patient, worked really hard to get well but still have intense and intrusive pain, could we be Pollyanna and change the world by suggesting that person do it all again? Or try yet another something?

How we handle this situation is not yet clear. We have so little guidance as to how best to help – in the past (from the 1980’s, 1990’s, 2000’s) the way forward was clear: “Hurt does not equal harm, we will help you do more despite your pain because pain may change but in the meantime life is carrying on and you’re missing out.” Then along came Moseley, Butler and Louw and acolytes telling us that just by explaining neurobiology and doing graded motor imagery or mirror therapy or graded desensitisation, pain could (read = would) change and because neuroplasticity, pain would go! In fact, some in this group have made it clear that a CBT approach to pain, where learning to live alongside pain, learning to accept that perhaps not all pain reduces, is “shortchanging” people with pain. Kind of like giving up.

But here’s the thing for me: what if, in the pursuit of pain reduction, people lose their relationships, their jobs and stop doing leisure things? What if the pain doesn’t change? What if the pain only changes a little? When does a person with pain decide when is enough?

You see, it is not sexy to admit that pain may not change despite our best efforts. Most of our treatments research shows a group of people who get some relief, a smaller group who get a lot of relief, a group who actually get worse, and most who make no change at all. I want to know how clinicians who really, truly believe in a treatment for all pain, and that all pain changes, handle the people who don’t respond? Because even with the very best approaches in all the world, there is nothing that provides a 100% positive response to pain (except death, and we don’t know what that feels like).

While we espouse person-centredness and informed consent, I think the option of learning to live well alongside pain is rarely given air time. What might be happening more commonly is a narrative where, to avoid our own distress and the risk of “nocebo” or giving up, clinicians present an ever-optimistic picture of “life without pain” if the person will only try hard enough. Driven in part by clinician’s shadow-land fear of pain (and assumption that it’s horrible, awful and a fate worse than…), and by the desire to be loved, thought of as heroic, perhaps compassionate – and nice and good person, and maybe even driven by fear of how to handle a disappointed, distressed person who may themselves feel let down because we don’t have easy answers to persistent pain.

We can dress this narrative up in many ways. We can call to neuroplasticity always being a thing (but remember that nerves that wire together, fire together … and remain there for all time, able to reactivate any time the alternate paths aren’t used) (Clem, & Schiller, 2016; Hayes & Hofmann, 2018). And of course, humans have the additional capability of language and the myriad neuronal connections that allow us to relate one word to many different experiences, objects, relationships. We can call it being positive, enhancing the placebo, being encouraging. We can say we’re on the patient’s side, we only want the best. We can say we know they can and will make changes if we’re positive enough, if we’re good at our therapy, if we believe….

But, is it ethical to present only half the picture? To talk about pain reduction as if it’s the only goal worth going for? To not discuss the “what if it doesn’t help?” To keep self-management, and acceptance and adjusting to an altered self concept out of our conversations, so that people living with pain may not ever know that it IS a thing and can be a very good thing? How is that providing informed consent?

In case anyone’s worrying, I’m honest about my stance on pain: it’s not that I don’t care (because I really do), but pain is often not the problem. Instead it’s having a good relationship with a partner, having fulfilling work, being able to relax and be grateful for a beautiful day or a soft dog or a child’s laugh. I encourage people to look not at what they can’t do, but what they can. At what we can make of what we have. At what’s important and how we can do more that’s aligned with our values. And of it being OK to feel sad when we can’t do things, and angry, and withdrawn and frustrated – because all of these emotions, like all our experiences, are part of life. What matters is how we handle these things. I hope we can allow them to be present, then let them fade as they do over time, making room for new and different experiences that will also come, and then go.

Ballus-Creus, Carles, Rangel, M., Penarroya, Alba, Perez, Jordi, & Leff, Julian. (2014). Expressed emotion among relatives of chronic pain patients, the interaction between relatives’ behaviours and patients’ pain experience. International Journal of Social Psychiatry, 60(2), 197-205.

Bartys, Serena, Frederiksen, Pernille, Bendix, Tom, & Burton, Kim. (2017). System influences on work disability due to low back pain: An international evidence synthesis. Health Policy, 121(8), 903-912. doi: https://doi.org/10.1016/j.healthpol.2017.05.011

Cano, Annmarie, Miller, Lisa Renee, & Loree, Amy. (2009). Spouse beliefs about partner chronic pain. The Journal of Pain, 10(5), 486-492. doi: http://dx.doi.org/10.1016/j.jpain.2008.11.005

Clem, Roger L., & Schiller, Daniela. (2016). New Learning and Unlearning: Strangers or Accomplices in Threat Memory Attenuation? Trends in Neurosciences, 39(5), 340-351. doi: https://doi.org/10.1016/j.tins.2016.03.003

Darlow, Ben, Dowell, Anthony, Baxter, G. David, Mathieson, Fiona, Perry, Meredith, & Dean, Sarah. (2013). The Enduring Impact of What Clinicians Say to People With Low Back Pain. Annals of Family Medicine, 11(6), 527-534. doi: 10.1370/afm.1518

Farin, Erik, Gramm, Lukas, & Schmidt, Erika. (2013). The patient-physician relationship in patients with chronic low back pain as a predictor of outcomes after rehabilitation. Journal of Behavioral Medicine, 36(3), 246-258.

Gardner, Tania, Refshauge, Kathryn, McAuley, James, Hübscher, Markus, Goodall, Stephen, & Smith, Lorraine. (2018). Goal setting practice in chronic low back pain. What is current practice and is it affected by beliefs and attitudes? Physiotherapy theory and practice, 1-11.

Hayes, Steven C., & Hofmann, Stefan G. (2018). Survival circuits and therapy: from automaticity to the conscious experience of fear and anxiety. Current Opinion in Behavioral Sciences, 24, 21-25. doi: https://doi.org/10.1016/j.cobeha.2018.02.006

Henry, Stephen G., & Matthias, Marianne S. (2018). Patient-Clinician Communication About Pain: A Conceptual Model and Narrative Review. Pain Medicine, 19(11), 2154-2165. doi: 10.1093/pm/pny003

Matthias, Marianne S., Bair, Matthew J., Nyland, Kathryn A., Huffman, Monica A., Stubbs, Dawana L., Damush, Teresa M., & Kroenke, Kurt. (2010). Self-management support and communication from nurse care managers compared with primary care physicians: A focus group study of patients with chronic musculoskeletal pain. Pain Management Nursing, 11(1), 26-34. doi: http://dx.doi.org/10.1016/j.pmn.2008.12.003

Parsons, Suzanne, Harding, Geoffrey, Breen, Alan, Foster, Nadine, Pincus, Tamar, Vogel, Steve, & Underwood, Martin. (2007). The influence of patients’ and primary care practitioners’ beliefs and expectations about chronic musculoskeletal pain on the process of care: A systematic review of qualitative studies. Clinical Journal of Pain Vol 23(1) Jan 2007, 91-98.

Roche, Jenny, & Harmon, Dominic. (2017). Exploring the facets of empathy and pain in clinical practice: a review. Pain Practice.

Sessa, Paola, & Meconi, Federica. (2015). Perceived trustworthiness shapes neural empathic responses toward others’ pain. Neuropsychologia, 79, 97-105. doi: https://doi.org/10.1016/j.neuropsychologia.2015.10.028

Big questions in pain rehabilitation

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

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

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

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

Uncertainty: perennial controversies in pain understanding

As I write this post today, yet again there are new theories being proposed for that most common of experiences: pain. Not only theoretical controversies, but even the definition of pain is being debated – is pain an “aversive” experience? An aversive sensory and emotional experience typically caused by, or resembling that caused by, actual or potential tissue injury. Some researchers have recently “found” a new nociceptive fibre (though they persist in calling it a “pain fibre” – once again perpetuating the idea that pain is one and the same with nociception).

One of the conversations is whether pain is a sensation, or an emotion, or something else. When I went to University and studied psychology, sensation was defined as “information transmitted by sensory receptors” – in other words, activity in the sensory receptors prior to perception is classified as sensation. Emotions are also defined in psychology, and depending on the theory being followed might be defined as “a complex reaction pattern, involving experiential, behavioral, and physiological elements.” Perception involves recognising and interpreting sensory information, and invokes the idea of awareness as an essential feature. (This is a good place to begin searching for definition – click)

The term aversive indicates “a physiological or emotional response indicating dislike for a stimulus. It is usually accompanied by withdrawal from or avoidance of the objectionable stimulus.” So pain, unlike most sensory experiences also contains an intrinsic element of distaste and avoidance – even people who pursue painful rituals like body suspension will acknowledge that the experience of being pierced is not pleasant but do it to achieve something else, often a feeling of achievement, accomplishment, meeting a challenge. Doesn’t sound too different from people who enjoy running a marathon, or lifting heavy weights.

The new proposed definition also includes the phrase “caused by, or resembling that caused by actual or potential tissue damage” – because we learn to associate the experience we call pain (or whatever word we use in our first language) with what happens when we graze our skin, get pricked by a needle, or knock our shin. For potential tissue damage, think of those staring contests we used to do as kids: who will blink first? Or consider how long we can sit before we’ll move to relieve the numbness-then-ouch on our buttocks! I prefer the term “associate” than “caused by” because we don’t always perceive pain at the time of tissue damage (think about the bruises we find in the morning after a sports game – but we don’t recall exactly how we got them).

So, for what it’s worth, pain isn’t simply a sensation (the experience is always aversive, and invokes an emotion alongside the sensory characteristics) and it’s not simply an emotionit’s a perception, an interpretation of sensory input via nociceptors in the context of current goals (and consequently, attentional focus), social meaning and values, and past experiences (both personal and vicarious). These latter aspects are really important because it’s not uncommon to fail to perceive “ouch” during an important sports game when the attention is elsewhere, and some beautiful experiments have shown that our perception of a potentially painful experience is influenced by what we’re told about the stimulus (Arntz & Claassens, 2004).

The controversies over a definition of pain matter because after the original definition of pain was agreed upon, it was finally possible for researchers, clinicians and commentators to distinguish between the experience and its sensory apparatus. This is important because it enables a focus beyond what goes on in the tissues, to the person’s experience. Prior to defining pain in this way, if a person claimed to have pain but there was no nociceptive activity, he or she was considered lying or mentally unwell. Traces of this attitude continue to this day, sadly.

Focusing on the person’s experience has allowed treatment to shift beyond “issues in the tissues” to help the person deal with what has happened. Even in the absence of current tissue damage and pain, people can continue to be fearful of potential tissue damage and potential pain. Should anyone question this, I usually point out the extraordinary lifestyle changes made by people who have had angina. These people may not be currently experiencing any chest pain at all – but yet protect themselves from the potential of chest pain because “it might happen again.”

A shift away from addressing sensory stimuli towards helping a person who is experiencing pain involves moving away from a biological-only model of disease. We usually call this a biomedical model where what goes on in the body is considered separately from the person who is the subject of “disease”. Of course, this is a straw man argument because biomedical models have been extending to include the person for at least 30 years. Most medical practitioners would want to address the “why has this person fallen and fractured their neck of femur” alongside “fixing the neck of femur fracture with a plate and pin.” But, it troubles me greatly when I hear people say “but what about the bio?” when it comes to incorporating a broad, multifactorial understanding of people experiencing pain into pain rehabilitation. A multifactorial model (call it biopsychosocial if you will) has never negated the biological contributing factors – but has instead placed those factors into relative importance with psychological and social contributions. And psychological and social factors seem to have more to contribute to our experience of pain and resultant disability than, in particular, what happens to a tendon or disc.

And this leads me to the perennial problem of what do we do if pain doesn’t settle, despite our best efforts. This problem is a real and ongoing challenge for both the person experiencing pain, and his or her health. I think it’s a question many health professionals shy away from. Are we afraid we’ve let the person down? Let ourselves down? Failed somehow? What is it like for the person with pain – constantly wondering if this next treatment will do the trick? Or the next? Or whether they’ve failed? Or is it something sinister? There’s no doubt that pain is aversive and it can invade so much of life – but if so much of our experience of pain is related to how we interpret it, what if we were able to re-interpret this experience as less sinister, less distressing?

Health professionals are powerful attitude shapers. Could we use this influence to help people be a little less afraid of pain, and maybe a little more confident that although pain is inherently aversive, humans are infinitely creative and resourceful and can make peace with pain’s presence?

“‘Specialized cutaneous Schwann cells initiate pain sensation”. Abdo H, Calvo-Enrique L, Martinez Lopez J, Song J, Zhang MD, Usoskin D, El Manira A, Adameyko I, Hjerling-Leffler J, Ernfors P.
Science. doi:10.1126/science.aax6452

Arntz A, Claassens L. The meaning of pain influences its experienced intensity. Pain. 2004;109: 20–25. pmid:15082122

The know-do gap: does social media help change things?

This post is prompted by a Facebook post from Connor Gleadhill asking “in what way is SoMe contributing to knowledge translation (KT)? I’m interested in the experience of those tagged and if anyone is aware if it has been rigorously tested. As far as I’m aware it hasn’t. Is it simply a confirmation bias arena? We are humans after all, and we curate our experience on SoMe.”

Oh such a great question and one reason I still hang out on social media!

I’ve been blogging since 2007, two years before the famous Body in Mind (who have just announced they won’t post any more content). Over that time I’ve risen to the top of the blogs, then plummeted down to my current level. Yet I still have a passion for doing this (usually) weekly post.

One reason I post is in answer to Connor Gleadhill’s question: one method for translating knowledge from journals into clinical practice is through online content. Content that’s accessible (not behind a paywall). Content that offers an opinion. Content that (hopefully) translates a-contextual information into a context more familiar to clinicians.

Is there evidence that knowledge translation occurs in this space or is it all a vast echo chamber where we listen to ourselves and pretend that everyone who is anyone agrees?

Well, in the pursuit of understanding this phenomenon, I’ve been researching the research looking at the effectiveness of one form of social media: the community of practice. A community of practice is a concept developed by Wenger yet one that has (probably) existed since humans took up tools and started learning from each other. It’s a place where “groups of people … share a concern or a passion for something they do and learn how to do it better as they interact regularly.” Senior or recognised “expert” members of the group provide experiential knowledge to guide junior or “apprentice” members as they learn how to … the “how to” depends on the group. In my case, it’s a group devoted to learning how to apply a multifactorial model of pain into diverse areas of clinical practice.

The group I’m part of is unusual in that it has emerged organically, not having been established artificially for the purpose of studying it. I’ve written a paper on the findings from a study of this group, to be submitted shortly. So when I talk about “effectiveness” I have to refer to artificial studies where communities of practice have been examined. One integrative review by Rolls, Hansen, Jackson and Elliott (2016) found 77 studies consisting of 44 qualitative papers, 20 mixed methods studies, and 8 literature reviews. The range of social media used was wide and included Listservs (remember them?), Twitter, “general social media” (not sure what that really means!), discussion forums, Web 2.0, virtual communities of practice, wiki, and Facebook. The clinicians involved included medical practitioners, multidisciplinary specialty group, health care professional “in general”, midwifes, nurses, and allied health professionals. The study found that:

…social media use is mediated by an individual’s positive attitude toward and accessibility of the media, which is reinforced by credible peers. The most common reason to establish a virtual community was to create a forum where relevant specialty knowledge could be shared and professional issues discussed (n=17). Most members demonstrated low posting behaviors but more frequent reading or accessing behaviors. The most common Web-based activity was request for and supply of specialty-specific clinical information. This knowledge sharing is facilitated by a Web-based culture of collectivism, reciprocity, and a respectful noncompetitive environment. Findings suggest that health care professionals view virtual communities as valuable knowledge portals for sourcing clinically relevant and quality information that enables them to make more informed practice decisions.

Rolls, Kaye, Hansen, Margaret, Jackson, Debra, & Elliott, Doug. (2016). How Health Care Professionals Use Social Media to Create Virtual Communities: An Integrative Review. Journal of Medical Internet Research, 18(6), e166. doi: 10.2196/jmir.5312

Heidi Allen and colleagues (2013), from Body in Mind, found that by releasing papers on social media, there was an increase in dissemination of those papers. Chan and colleagues (2018) also identified that there was much “scholarly engagement” through online interactions. There are detailed analyses of the social construction of knowledge online (Gunawardena, Flor, Gomez & Sanchez, 2016), studies of how acceptable social media knowledge translation is amongst health researchers and clinicians (Tunnecliff, Illic, Morgan, Keating, Gaida, Clearihan et al 2015), and examination of patient’s use of social media (Antheunis, Tates & Nieboer, 2013).

Social media can “democratise” information. Because social media is readily accessible across so many forms and devices, and because there is greater opportunity to interact with authors, and the numbers of people seeking health info, social media allows more information flow than journal articles or conferences. There’s always a risk in that: loud voices, those with marketing smarts, those with a punchy delivery and especially those with a controversial message will attract more attention than, for example, my long form writing on complex topics.

Reader beware must also be the motto. Info dumping a load of references tangential to the actual topic, along with little, if any, critical analysis of that material, can lead to what appears to be authoritative content, but may perpetuate unhelpful and outdated ideas.

I continue blogging because it helps me sort my ideas out. I find it helps me “construct” and assemble what I know into something I can then apply. It helps me sift through the overwhelming wealth of research pouring out of Universities and research groups everywhere around the world. As I look at the over 1100 posts I’ve written, I can see the issues I’ve pondered, and the stance I take on issues such as communication, respect, thinking before adopting a new treatment, clinical reasoning, collaboration. Many of these are attitudes towards people who live with pain.

The things I most appreciate about social media are that I have a network of people with whom I can nerd out. People who do “get it”. People who may not agree with me but who are willing to entertain alternative views. People who push me to learn about areas I wouldn’t normally. People who live with pain who inspire me. People for whom I have great compassion because of their personal stories. I have a sense of community. A real assemblage of people I can turn to when I have questions.

In answer to the question “Does social media contribute to knowledge translation?” I would say it is as effective as the readers and contributors make it, possibly more effective than attending a conference (the best part is always the social isn’t it?!), certainly more useful for generating clinical discussion than a publication locked up in a journal, and as long as conversations remain respectful and discuss ideas and not personalities, it’s an effective way for clinicians to construct knowledge for their practice setting. I’m still going to blog even if my average reader numbers in the last week were a measly 100 people.

Allen, Heidi G, Stanton, Tasha R, Di Pietro, Flavia, & Moseley, G Lorimer. (2013). Social media release increases dissemination of original articles in the clinical pain sciences. PloS one, 8(7), e68914.

Antheunis, Marjolijn L., Tates, Kiek, & Nieboer, Theodoor E. (2013). Patients’ and health professionals’ use of social media in health care: Motives, barriers and expectations. Patient Education and Counseling, 92(3), 426-431.

Chan, Teresa, Trueger, N Seth, Roland, Damian, & Thoma, Brent. (2018). Evidence-based medicine in the era of social media: Scholarly engagement through participation and online interaction. Canadian Journal of Emergency Medicine, 20(1), 3-8.

Gunawardena, Charlotte N, Flor, Nick V, Gómez, David, & Sánchez, Damien. (2016). Analyzing social construction of knowledge online by employing interaction analysis, learning analytics, and social network analysis. Quarterly Review of Distance Education, 17(3), 35.

Tunnecliff, Jacqueline, Ilic, Dragan, Morgan, Prue, Keating, Jennifer, Gaida, James E, Clearihan, Lynette, . . . Mohanty, Patitapaban. (2015). The acceptability among health researchers and clinicians of social media to translate research evidence to clinical practice: mixed-methods survey and interview study. Journal of medical Internet research, 17(5).