Pain Concepts for Occupational Therapists course is now open for pre-enrolments! Click here for more information and to enrol [click]
Please note: I am not GST registered, there is no GST on the fee for this course.
I will issue tax receipts on request – please email me if you need one.
There are two payment options: Paypal and Stripe (your credit card). If you want a separate invoice because your work is paying for you, please email me direct. There will be an additional NZ$20 administration fee for this.
Remember: this course is limited to 20 participants at a time so you get the best learning experience, so be in quick!
Researchers and clinicians are drawn to studies with many participants. Especially randomised controlled trials, where two groups are randomly divided and one gets “the real thing” while the other does not. The joy comes from knowing that results from these kinds of studies suggest that, all things being equal, the differences between the groups is “real” and not just by chance.
When we come to analyse the graphs from these kinds of studies, what we hope to see are two nice bell-shaped curves, with distinct peaks (the arithmetic mean) and long tails either side – and a clear separation between the mean of one group (the experimental one) and the control group.
It should look a bit like this:
Now one of the problems in doing research is that we can’t always guarantee a large sample – for example, it’s difficult to find enough people with a relatively rare problem like complex regional pain syndrome to randomly split the groups to iron out major differences between them. And, this kind of research design presumes the principle of ergodicity – here for more information from Wikipedia, or here for a more detailed examination relating to generalising from groups to individuals.
This research design also struggles to deal with distributions that don’t conform to the lovely bell curve – things like bimodal distributions, or skewed distributions. And if we draw only on the mean – we don’t get to see these delightful peaks and troughs – or the people at either end of the curves.
The more variables we add to analysis, the more complex the statistics needed – so in the case of pain research, we often have to simplify the research question, do complex maths to “normalise” the results, and ultimately we get research that doesn’t look the slightest bit like the people we see in clinical practice. No wonder we get results that don’t look nearly as nice as the research studies!
Now I don’t mind statistics at all, but I do mind research papers that don’t declare the assumptions made when using analyses. Many papers assume the reader knows these assumptions – unlike qualitative research where the authors philosophical assumptions are openly stated, and where epistemology and ontology are considered part of the research design.
So why might lots of data points be cool?
Most of us working in a clinic will be seeing an individual. One person, with all their unique history, attributes, vulnerabilities, preferences and values. When we extrapolate the findings from RCTs especially, and apply them to this unique person, we risk failing to acknowledge that we’re violating the principle of ergodicity, and that our person may be one of those falling at the tails of that bell curve: or worse, in the middle of a bimodal distribution. Given that most pain problems, particularly persistent pain, are multifactorial, applying a single “solution” no matter how many studies showing a positive effect there are, may not cut it.
For years I’ve been pointing out the value, both in research and in clinical practice, of single case experimental designs. There are loads of reasons for using this approach, and it’s a method with a long history. Essentially, the person serves as their own control, they take lots of measurements before introducing a treatment, the treatment is applied and changes in the measurements are closely monitored. If there’s a change in the expected direction, we can test whether it was the treatment by withdrawing said treatment, and closely monitoring any changes in the measurements. Of course, there are challenges to using this approach – we have to be able to withdraw the treatment, and that doesn’t work if it’s something like “information”. But there are ways around this – and the method of intensive longitudinal repeated measures is becoming a rich source of information about change processes.
Change processes are changes that mediate the final outcome. In other words, when we do a treatment, either the treatment directly causes the end outcome – eg give someone a raised toilet seat, and they can get off the toilet because the toilet is at a good height for them – or via some other process – eg by giving the raised toilet seat, the person gains confidence to get on and off the toilet so it’s not the toilet seat per se, but enhanced confidence that mediates the outcome.
Change processes matter because once we’ve identified them, we can develop ways to work with them more effectively. We can also measure the progress a person makes on more than one change process, and refine what we do in our treatments in response. The more data points we collect from that one person, the more we can track their trajectory – and the better we can understand what’s going on in their world to influence their responses.
Technology for repeated measures in real time has become much smarter and more invisible than it used to be. We can still employ some of the simpler techniques – a pen and paper diary still has used! But we then have to rely on the person remembering to fill them in. Passive data collection using wearable technology is something many of us use to track fitness, diet, sleep, travel, heart rate variability and so on. Set the parameters, and as long as you’re wearing the gadget, your data is captured.
Before anyone leaps in to tell me the gadgets are prone to measurement error, believe me I know! For example, monitoring sleep using a phone (or even a smartwatch) doesn’t monitor sleep depth, it monitors movement (and records snoring LOL). However – and this is important – it is more likely to get used than anything requiring me to do something extra in my day. And we can integrate both passive data collection and active data collection using similar technologies. For example, it’s not difficult to send an SMS (instant text message) at random times during the day to ask someone a brief and simple question.
Where these repeated measures approaches get a bit gnarly is in analysing the data – but even this doesn’t mean it can’t be done. The analyses require a good understanding of what it is being measured (and why), and how best to use complex statistical analyses to understand how one factor (variable) might influence another.
The advantages of using intensive measures in clinic lie with understanding how, for example, one day of additional activity (measured using the step counter combined with GPS tracking) might directly influence mood the next day (or pain, or energy levels or whatever). We still need to apply critical thinking to uncover the causal mechanisms (is it plausible for factor X to directly cause a change in factor Y?) and to check whether the results are stable over time (or just a chance fluctuation). Another advantage is that we can quickly step in to experiment with an intervention – and watch what happens. For example, if we think being very active on one day has an effect on mood the following day, we can test this out: try experimenting with a day of lots of activity, and monitor what happens the next day, or the converse, do very little and monitor what happens with mood the following day. Rinse and repeat until we’re certain that for this person, activity level has an effect on mood.
And the study that made me think about all this? It’s this one by Whibley, Williams, Clauw, Sliwinski and Kratz (2022) – click
If we want to really develop excellent clinically-relevant research-based ways to understand what might be going on for the one person in front of us, and not for the large mixed group of people included in a randomised controlled trial, we could be inspired to look at intensive repeated “micro-longitudinal” research strategies as models for clinic-based research.
Whibley, D., Williams, D. A., Clauw, D. J., Sliwinski, M. J., & Kratz, A. L. (2022). Within-day rhythms of pain and cognitive function in people with and without fibromyalgia: synchronous or syncopated? Pain, 163(3), 474-482. https://doi.org/10.1097/j.pain.0000000000002370
People come to see us because they have a problem. So the formulation approach I’m taking today begins from “the problem” and works back and forward. It’s called a “network” model, and is something many of us do without knowing that’s what we’re doing. The network model can also be called a functional analysis where we’re looking at what happens, and what a person does, and the ongoing consequences or loops that occur over time.
Angelina comes to see you because her neck is very sore. She’s not sure why it’s sore, or what happened to start it off, but she thinks it could be after working for a week at a new workstation where she had to look to the right to read documents, and straight ahead to work on the main monitor. It’s been there for over six months, and she’s come to see you now because she has a week of annual leave and some time to spend on herself. She’s played with changing her pillows because her neck is more uncomfortable in the morning, and it gets painful towards the end of the day just before she heads to sleep. She’s having trouble turning her head to reverse down her driveway, and looking up is almost her least favourite thing. Her sleep is OK once she’s got off to sleep, but initially it takes her a while to fall asleep because she can’t get comfortable. Her partner is getting frustrated with her because she doesn’t want to kiss him because that means she has to look up, and she doesn’t sit on the couch with him any more because he likes to rest his arm around her shoulders – and that increases her pain. She’s irritable and finds herself getting snappy at him. Angelina is in her mid-50’s, otherwise well, but has always lived with various aches and pains, most of which she ignores until they go away. She has had a painful shoulder and lateral elbow pain that lasted for over a year, but has gradually settled down – she didn’t do anything special to manage those after having only a small response to a steroid injection into her shoulder.
Angelina’s main concern is to establish whether her neck pain is anything to worry about, or whether it’s just more of the same, like her shoulder and elbow pain. Her other focus is on getting a comfortable position to go off to sleep because she thinks this is adding to her problem.
OK, so we have a lot of information about Angelina, and we can organise this information in many different ways. Given her main concern is her prognosis and then her sleep, we need to make sure the way we organise the information offers a possible explanation – a hypothesis.
Take a look at the network diagram below to see how I’ve sketched the information out – you’ll note that at this point I’m not trying to develop a diagnosis, I’m focusing on the problem as she sees it.
The matrix I’ve used here comes from Hofmann, Hayes & Lorscheid (2021) Learning Process-based Therapy, published by Context Press, New Harbinger.
What I’ve done is summarised the processes that I think might be relevant to Angelina’s presentation, and drawn the relationships between various aspects that she’s described. You might organise this information differently – and I’d usually do this in collaboration with the person.
If you look closely at the networks, you’ll see several loops that likely will continue if something doesn’t change. One to spot is this set below:
You can see that she’s worrying about her sleep, doesn’t get comfortable as she goes off to sleep, feels fed up, has changed her pillow (in line with her self-concept of someone who is a practical person), and the whole network will likely remain winding itself up unless “something” comes to disrupt this pattern.
This set of relationships raises some factors we need to consider when we’re thinking of interventions. As someone who sees herself as a practical person who doesn’t seek healthcare often, and has had previous bouts of pain that settled without specific treatment (though she sought it for her shoulder), we could interpret this as meaning she doesn’t panic about her situation too much – but we could also wonder if, because she’s seeking help now, she’s seeing her problem as different from previous pain problems and maybe this one is worrying her more than she’s ready to acknowledge. Just to the right of the loop I’ve shown above, you’ll see a box where she says “I’ll deal with it if it doesn’t get in the way of my family and relationship”. This is important – it’s an expression of how she sees herself, an important value, and her motivation for seeking help is also framed in terms of maintaining her loving relationship. For this reason, I’d be looking for interventions that either won’t intrude on her family life and routines, or I’ll be looking for ways to frame whatever treatment suggestions I make in terms of how this will support her relationship.
By drawing a network diagram showing potential processes that might be influencing Angelina’s presentation, I’m answering my question “why is she presenting in this way at this time, and what might be maintaining her predicament” – she really wants a prognosis so she can establish a strategy to maintain her relationship with her family, keeps her “practical person” view of herself alive, and in a way that she can still fulfill her desire (and others’ expectations) to be fully productive at work.
I could analyse (or organise) Angelina’s information in lots of different ways. This is just one – and in some ways, the particular model I use to assemble her information is less important than ensuring Angelina is an equal partner in sketching out these relationships. I could have drawn the Tim Sharpe CBT model or used an ACT-based model and looked for patterns of psychological flexibility. I could have used Vlaeyen’s fear-avoidance model – and I’m sure there are plenty of others that might have been useful. Irrespective of the model, what needs to be evident is using the information the person offers us, modifying the way we approach therapy as a result, and collaborating with the person to decide treatment priorities. This means we as clinicians need to be nimble, responsive, adaptive, and stop using treatment protocols! Any approach that suggests offering the same approach irrespective of the unique things influencing a person’s presentation is doomed to do a half-arsed job. These protocols might work for some, but they won’t work for all, and they may fail to address the real reason the person came to see us in the first place.
I’m struck at how often clinicians focus on pain intensity when how much pain intrudes on life matters more. I wonder whether new therapists might not have read some of the old studies looking at the relationship between pain intensity and disability – because while there is a relationship there, it’s not nearly as strong as we might think.
Let’s define a couple of terms first: pain is, I think most of us can agree, “an unpleasant sensory and emotional experience associated with, or resembling that associated with, actual or potential tissue damage”. (click for full definition and notes)
Disability isn’t quite as clear-cut a term and it’s gone through a few permutations over time. Probably the way I define it fits more with “functional limitations” – but the diagram below from WHO describes their model of disability .
In other words, disability is the combined impact of all of these aspects of health on a person. Pain arises from some kind of health condition (yes, even pain where we’re not entirely sure of the “diagnosis” and where we can’t quite yet be definitive about what’s going on). In turn, pain influences body functions (and perhaps structure – certainly there’s a lot of evidence showing altered neural networks while someone is experiencing acute pain, and changes are also present in persistent pain conditions. See the refs below – but interpret cautiously, this is an emerging area of research).
All of the relationships above are bidirectional, meaning that there’s no linear path from one aspect to another – it’s complex.
What this means is that we shouldn’t be one bit surprised that the relationship between experiencing pain, the health condition, what a person wants to do, how much they participate, and their context is not at all straightforward. Yet so often I see research papers looking at altering one aspect of a disorder or disease, measuring pain as the primary outcome, and being a bit surprised that even though the pain might have reduced a little – the person isn’t “taking advantage of it.”
A good example of this is returning to golfing after knee arthroplasty. Prior to surgery many people have taken to golf carts so they can get around the course. After surgery, with less pain in most instances, you’d think people would go back to walking the course – it’s a great way to keep fit, it’s not as difficult to do as a bunch of gym-based knee exercises, and it makes for an enjoyable game. What actually happens? Jackson, Smith, Shah, Wisniewski and Dahm (2009) found that over half (57%) returned to golf within 6 months, with 81% playing golf as much or more often than before surgery. They reported less pain with 83% reporting no pain – 28% had walked the course before surgery, so what percent do you think would carry on walking now that their pain was less?
Only 14% walked the course after surgery.
No relationship between walking and age, sex, BMI, pain, receiving advice not to, bilateral or unilateral prosthesis, or current golfing handicap.
Even in acute musculoskeletal pain, where we know that to wait until all pain has gone will harm the person (think of your ankle sprain) it seems clinicians would rather address pain intensity than the impact of pain on what a person wants and needs to be able to do. Case in point: Adam Meakins recent back pain.
I’d love to hear clinicians dig just a little deeper – like “so if pain was less of a problem, what would you be doing?” Because we know that people seek treatment for back pain because of the effect on what the person wants to do – Ferreira, Machado, Latimer, Maher, Ferreira and Smeets (2010) showed this in a meta-analysis over a decade a go.
Is it either/or though?
Well by now readers of this blog should know that I don’t think anything is as simple as a dichotomous yes or no. Of course pain intensity matters – but what I often see, especially on social media, is an almost exclusive focus on pain intensity and “proper” form and “exercise” with little attention to what it is the person wants to do.
Because the unknown part of the Jackson et al (2009) study is why these people didn’t resume walking, even though they were in less pain, and were playing golf more.
I’m picking the reasons lie within those pesky contextual factors – who is around the person, their physical environment, community attitudes and beliefs, their fears and anxieties, what’s thought to be normal or expected – the bread and butter of occupational therapy, and coincidentally, the most complex part of health to research and understand. No wonder there are those who prefer the conceptually simple mechanistic, biomedical approach – these psychosocial (emphasis on the social) can’t be rote learned and spat out in an exam, they need conceptual understanding and unique, individualised solutions.
Barroso, J., Wakaizumi, K., Reis, A. M., Baliki, M., Schnitzer, T. J., Galhardo, V., & Apkarian, A. V. (2021, Mar). Reorganization of functional brain network architecture in chronic osteoarthritis pain. Human Brain Mapping, 42(4), 1206-1222. https://doi.org/10.1002/hbm.25287
Geuter, S., Reynolds Losin, E. A., Roy, M., Atlas, L. Y., Schmidt, L., Krishnan, A., Koban, L., Wager, T. D., & Lindquist, M. A. (2020, Jun 1). Multiple Brain Networks Mediating Stimulus-Pain Relationships in Humans. Cerebral Cortex, 30(7), 4204-4219. https://doi.org/10.1093/cercor/bhaa048
Jackson, J. D., Smith, J., Shah, J. P., Wisniewski, S. J., & Dahm, D. L. (2009, Nov). Golf after total knee arthroplasty: do patients return to walking the course? American Journal of Sports Medicine, 37(11), 2201-2204. https://doi.org/10.1177/0363546509339009
Wager, T. D., Hu, B., Jepma, M., Krishnan, A., Schmidt, L., Roy, M., Atlas, L. Y., Goldstein, P., Yao, Z., Woo, C.-W., & Zheng, W. (2020). Pain-Evoked Reorganization in Functional Brain Networks. Cerebral Cortex, 30(5), 2804-2822. https://doi.org/10.1093/cercor/bhz276
If it hurts – take notice, and avoid it. Learn from it. If there are other people around, make sure your behaviour is noticeable so they take care of you and don’t do what you just did. If they look after you, you’ll probably do the same thing again when you hurt, if they don’t you probably won’t.
This is one description of pain behaviour and how it works. It’s the only part of our pain experience that we can share directly with one another (actions and words). The “doing” part is also the part that is most affected by pain – even distress is signalled to others – so it’s unsurprising that a lot of attention has been paid to how therapists can change behaviours that are unhelpful.
Many of us start with offering an explanation. Language is something that sets humans apart from other creatures because we learn concepts, and associate one concept with another through it (see Beeckman, Hughes, Kissi, Simons & Goubert (2019) for excellent insights into relational frame theory and pain). I’m sure there are many clinicians who’ve tried to give information (to “educate”) to a person and found it works well. And then there are those who just don’t get it. There are three main points that people who respond well to “education” seem to find useful: (1) pain doesn’t mean my body is damaged (the old “hurt does not equal harm” message that originated with Fordyce. Butler (2017) offers us a selection of Fordyce’s wisdom – and wit); (2) thoughts, emotions and experiences affect my pain (again, something the cognitive behavioural therapists have been sharing with people since the beginning of multidisciplinary pain management programmes); and (3) I can retrain my over-protective nervous system (yes, another thing we’ve been doing in pain management for many years… not that we are unlearning pain, we’re helping the nervous system settle down and becoming less distressed by the experience).
We quite like talking to people – maybe because it appeals to our often dictatorial mind (read A Liberated Mind for a new take on this!). And so for people experiencing pain, we talk. But talk on its own isn’t super-effective. After all, for every one time we hear “pain doesn’t mean my body is damaged” we can Google and find literally hundreds of messages telling us our spine is fragile, our joints are damaged and pain is a sign there is harm.
So what is more potent than words? It’s learning by experience. Doing.
A brand new analysis of “sufficient conditions” for psychological therapy was published in Pain (Batho, Kneale, Sutcliffe & Williams, 2021).
Now I do have some reservations about calling this “psychological” because that word is loaded with meanings, not all of them helpful. Truth to tell, we humans use psychological approaches effortlessly in daily life – and it’s not “in the head/mind/emotions” which is almost inevitably what people first think of when they hear it…
In this analysis (which is complex – go read the paper!), the authors investigated 38 studies, did some horrendous statistical analysis and compared the ten most effective treatments with the ten least effective treatments. What they found was quite surprising, and I’m still pondering what it means.
They established that “interventions using graded exposure, graded exercise or behavioural rehearsal (exposure/activity), and interventions aiming to modify reinforcement contingencies (social/ operant) reduced disability levels when either approach was applied but not both.” [italics mine] They also found “exposure/activity can improve distress levels when combined with cognitive restructuring, as long as social/operant methods are not included in treatment.” [italics mine]
It pleased me to find that graded exposure or reactivation, when applied in the absence of social and operant contingencies, reduced disability and distress. And that social/operant approaches reduced disability on its own. The reason I’m happy is that graded exposure and reactivation with a dab of “let’s notice your thoughts and check out whether they’re helping you” are very common approaches used across occupational therapy, physiotherapy, chiropractic, osteopathy, coaching and a whole bunch of therapists who work with people in pain. Graded reactivation with information has been the mainstay of pain management since at least the 1980’s. We know it’s helpful. Graded exposure has gained popularity since the mid-1990’s and we know that it’s helpful too. And we use social reinforcement just because we’re humans.
In the analysis, ACT was used in only one study. ACT doesn’t do cognitive restructuring and instead, uses six interwoven processes that together support psychological flexibility. I use ACT as my primary approach, both for myself in daily living, and with people who come to see me for help with their pain.
What I like about ACT is that it’s flexible, allows people to notice what their mind tells them, but helps them to step back from that dictator within to make a choice about what to do. It’s the doing part (based on what matters in a person’s life) that I enjoy because it involves both graded exposure and graded reactivation. And if a person doesn’t relate to what they’ve been told about their pain, we don’t have to offer another explanation, we can help the person work out what works for them in the context of their own life.
So where are we with this now? Given that we can’t stop being social animals, and that we respond to one another without knowing it, I’m not sure we can avoid inadvertently using social and operant approaches as therapists. What we can do, though, is become more knowledgeable about behavioural approaches in pain management and rehabilitation – and that undoubtedly means learning a whole lot more psychology. Perhaps we might need to reframe our own understanding of psychology so we feel more comfortable with it – a bit like explaining pain and cognitive functional therapy have both helped us feel OK to step into doing what has often been the territory of psychologists.
Batho, A., Kneale, D., Sutcliffe, K., & Williams, A. C. C. (2021, Oct 1). Sufficient conditions for effective psychological treatment of chronic pain: a qualitative comparative analysis. Pain, 162(10), 2472-2485. https://doi.org/10.1097/j.pain.0000000000002242
Beeckman, M., Hughes, S., Kissi, A., Simons, L. E., & Goubert, L. (2019, Oct). How an Understanding of Our Ability to Adhere to Verbal Rules Can Increase Insight Into (Mal)adaptive Functioning in Chronic Pain. Journal of Pain, 20(10), 1141-1154. https://doi.org/10.1016/j.jpain.2019.02.013
Butler, S. (2017). The wit and wisdom of Wilbert (Bill) Fordyce (1923-2009). Scandinavian Journal of Pain, 16(1), 160-163.
Leake, H. B., Moseley, G. L., Stanton, T. R., O’Hagan, E. T., & Heathcote, L. C. (2021, Oct 1). What do patients value learning about pain? A mixed-methods survey on the relevance of target concepts after pain science education. Pain, 162(10), 2558-2568. https://doi.org/10.1097/j.pain.0000000000002244
It’s no secret that I enjoy using social media to discuss topics associated with pain. After all, I wouldn’t have been blogging for as long as I do if I didn’t find this medium interesting in some respect!
At the same time, social media “debates” can truly be unhelpful, unpleasant and even harmful. Yet possibly one of the most harmful communicative strategies that I see is reference to “research says”. What? you say – but, but you LIKE research! Well yeah I do – but research is not a neutral “Truth” that means we can simply grab a published paper, find the results we like, then hang on to that for the rest of our careers!
What do we mean when we say “Research says”?
You know the Background part of a paper? And you know the Discussion section? The only bits read by some people – if they go past the abstract? These sections are important, but not perhaps for the reasons you might think. When I first started reading research papers, I used to think the Background was intended to highlight an unanswered question, and the Discussion was to put the answer (from the Results) into context and to establish “where next”? And there’s truth to this perspective. But it’s a beginner’s look at research. It’s a start to understanding the context of a piece of investigation. Reading these sections does give an insight into how the authors want to frame their piece of research.
Let’s pick it apart a bit. As Schostak and Schostak (2012) put it: “Each text is itself a framing of voices and their agendas, shaped to present a debate slanted towards a conclusion.” They go on to say “…whilst acts of framing bring and impose order, those very processes of ordering and categorisation select and edit so that some things are chosen to be foregrounded, others to be background and yet others to be excluded.”
In other words, these pieces of writing offer a selected view of what is going on in this part of the research and knowledge landscape. It’s understandable that people new to an area of study might not know what else is being said, or what else has been prioritised – but it’s rather less forgivable in people who have been working in, or studying or teaching in an area for many years.
So how do we “interrogate” research so we go beyond accepting the literature review and discussion at face value? And why does it matter?
Pain is always a personal experience that is influenced to varying degrees by biological, psychological, and social factors.
Pain and nociception are different phenomena. Pain cannot be inferred solely from activity in sensory neurons.
Through their life experiences, individuals learn the concept of pain.
A person’s report of an experience as pain should be respected.
Although pain usually serves an adaptive role, it may have adverse effects on function and social and psychological well-being.
Verbal description is only one of several behaviors to express pain; inability to communicate does not negate the possibility that a human or a nonhuman animal experiences pain.
In particular, I want to draw your attention to the first note: “Pain is always a personal experience that is influenced to varying degrees by biological, psychological and social factors.” My interpretation of this is that my experience of pain is mine. And while some people may have similar experiences, the particular way I experience pain is unique. It’s different from anyone else’s.
For clinicians – and researchers – respecting the unique experience of the person in front of us (or participating in a research study) is crucial. Yet we mainly read about GROUPED experiences in research, many of which are reduced to a single number on some questionnaire or scale.
One of the unspoken assumptions in much of our research, particularly quantitative studies, is that although we lose detail by grouping information, we retain essential information. Another assumption is that only the essential data really matters. Those details, that nuance, the individual isn’t relevant, or at least, it’s less relevant than the consistent information.
So interrogating, reading research critically matters – not only reading the methods section, but also reading the background and discussion. Because the background and what is selected from previous research and writing is used to frame what is thought important, while the discussion is used to illustrate and situation the importance of the research results. The reader’s job is to read these sections and look to the voices that are put in the foreground (thought important) and to look at those placed further back, or perhaps not even included.
And one set of voices often omitted are the people who live with persistent pain, those who experience acute pain, and those who care for and are affected by pain of any kind. We have yet to move pain research and management towards an inclusive “nothing about us without us” stance. Our research is dominated by studies about but not with people in pain.
How do we interrogate research?
Some key points (because people write whole books on this!)
Hold all research very lightly.
Never consider a single study to be sufficient.
Read widely. Read the background to the research and ask “Who isn’t included?” and “Which voices are foregrounded, which voices are backgrounded?”
When reading, ask yourself who will gain benefit from this? Who might lose?
What assumptions (explicit or implicit) are held when asking the research question, deciding on a method, analysing the results, and situating the piece in other research literature.
I really like the “cheat sheet” below for stretching my critical reading muscle.
And at the foreground for me is always “how is the voice of people experiencing pain represented in this paper?”
This is a great piece on critical reading – click – from Pavel Zemilansky and OpenOregon.
This piece from Massey University is also very helpful – click
And this is the book – click – by Schostak and Schostak
Now I’m the kinda woman who enjoys a bevvie or two – and I do love to talk! Combine them both with my favourite topic of pain, and you end up with Le Pub Home brew…and I’m speaking THIS SATURDAY!!
My topic? Let’s stop focusing on pain, because we have a few elephants in the room we need to discuss.
Come and join me as I poke and prod at assumptions made about why people come asking for help with their pain, why clinicians often focus on the wrong thing, why we need to listen to the messages buried beneath the “take my pain away” call – and why the skills clinicians have HAD to draw on during lockdown might just well be the Most Important Skills they have (psssst! Call them “soft skills” at your peril!).
I might wander into some philosophy, some sociology, and probably I’ll tread on some toes and push my own agenda to have more people recognise what occupational therapists already know about context, meaning, values and being flexible.
’nuff said: click on the link below and get in on the conversation (BYO home brew)
As New Zealand emerges from the most severe lock-down levels to greater freedom (but still not back to life as usual) I’ve been reflecting on what I’ve learned – no, not a new language, new baking skills, or sudden competence in using R (see here for a great tutorial), but things about myself. Odd though it may seem, I’m leaving lock-down with a sense of wistfulness. You see, the time from the end of March to end of April has been a lovely time for me.
I’m lucky, I have a good job, my work hasn’t changed much (well, a bit), my family are safe, I live close to the beach and a park, and the weather has been kind. It’s autumn in Christchurch, and it’s been mainly fine. The bird life has been flourishing. The foot traffic past my house has been families – Mum, Dad, kids on bikes and in pushchairs. Apart from the occasional drop-kick lighting fireworks or playing the Zombie Apocalypse Siren, and hammering from 7.00am to 11.30pm, our neighbourhood has been peaceful. And yet I know so many people in New Zealand and around the globe who are really struggling. Strange times indeed. So what have I learned?
Solitude is not the same as loneliness. Solitude is being alone and being OK with it. Loneliness is being alone when you don’t want to be. Being with my own thoughts, listening to the murmuring of sounds around me, letting my mind wander then gently bringing it back to focus is a pleasure, almost an indulgence. Having headspace to let what passes through my mind just pass by, without music or talking or anything interrupting my musing is a pleasure. Better still: being with someone who also appreciates being together in silence. I’ve learned to love solitude.
Some kids will remember this time with gratitude. I’ve watched whole families walking together, making huts from driftwood, spotting the teddies in the windows, making low-tech memories of time being together. I have a fairy door (and a fairy) at my gate, and watching the little kids search for the fairy (who flies from tree to tree each day!) is such a joy. I’ve seen Mums and Dads out cycling with their kids then heading home to do the DIY together. What a treasure! I’ve learned (again) that families need time being families.
Some things stay the same – especially if you live with pain. Even though my days have been peaceful, my pain has not. With changes to my routine, the weather, sleep, and world events playing on my mind, my life with fibromyalgia still needs managing. I’ve had aches in places I don’t usually have aches, and the things I do to live alongside my pain still need doing. For me these things are: making sure I carry on with mindfulness (I savour those moments when I can be with my thoughts but not part of them), go for my walk for headspace and body movement, keep my sleep/wake routine reasonably consistent, and eat normally (hah! there’s chocolate and alcohol and crisps. I may have slipped up a little there…). I’ve learned that pain management is really life management.
Comparing myself with others is a waste of time. Yes, there are people out there learning new things, self-improving all over the place, doing their on-line socialising (and CPD), being creative and producing a lot. Good for them! I admire their achievements, and I’ve even contributed to a few of those online Zoom talks. Meanwhile, I thought I’d have been truly productive in the studio making loads of silver jewelry (those of you who don’t know – that’s my ‘hobby’ that seems to have taken over my photography, painting, sewing and everything else!). I’ve created a few pieces – but when I caught myself feeling pressured to come up with a “COVID19 Collection” I realised that this pressure wasn’t me. It was my mind being competitive and wanting to prove something to others. The need to belong can lead me to also want to be acknowledged as Something Special. Better than. As good as. Because, of course, underneath that is “I’m not good enough as I am”. So I decided to let that rope go. I don’t have to compete. There isn’t a prize for She Who Produces The Most because in the end, life is a process not a goal. I’ve learned (again) that comparisons are one way my mind beats up on me, and my mind doesn’t know everything.
Resilient people are adaptable people. Resilience is a word many people in Christchurch, NZ, are well and truly over. Since 2010, and the 10,000 earthquakes since, plus the Port Hills fire, and the terror attack on Al Noor Mosque, people in Christchurch have been challenged more than many in our wee country. Resilience doesn’t mean we’re unchanged. Resilience means we change with circumstances and we develop new ways of being, ways of expressing who we are and what matters to us. I sometimes think people believe resilience means “Oh you’ve bounced back and life goes on as it was” but for me the events since 2010 have had a profound effect on my life. I can’t walk through my city without seeing earthquake-wrought changes. I see bumper stickers saying “they are us” and “kia kaha“. I walk past the memorial wall Oi Manawa when I head in to work. The new streetscapes, city buildings, ongoing roadworks and repairs – all part of the way my city has changed. That underground subversive element in Christchurch has touched so much of our lives. Resilient people have found ways to express who they are despite the enormous impact of events over the past 10 years. I’ve learned that holding on to what I value while finding new ways to express these has given me freedom and growth – but I’ve had to let go of the form, the habitual, the routines that used to frame them. It’s painful. It’s tiring. It’s real and raw and hard work.
How does all this fit into a blog about pain? If pain doesn’t challenge clinicians and people experiencing it, I’ve wasted the last 30-odd years of my clinical career, not to mention my hours of social media involvement!
Change, as a clinician, can be tough – letting go of the form of what we offer (because … science) while holding on to why we ever started working as clinicians requires flexibility.
And solitude – to reflect on what it is we really want. We do it for families, those closest to our hearts (our own families, and others), so people can be who they really are.
Comparing ourselves with others leads to a popularity contest, and the self-management approach to pain is most definitely not a popular meme. I am not part of the Instagram/Twitter/TikTok/whatever meme culture. I don’t do short, snappy sound bites. There are, as far as I can see, no short-cuts or quick fixes for learning to live well with pain. There are only connections between people who care, who are willing to be vulnerable, who will let go of some things in order to take on new things in the pursuit of what matters.