Health

‘Women’s pain’ – not just ‘women’s pain’

Women really do get a rough deal when it comes to pain. We live with the myth that because women experience pain in childbirth and (often) with periods of course women can ‘deal with it.’

Until recently women and female animals haven’t been included in pain research, and guess what? Women and female animals don’t have the same biological system for processing nociception.

Men are told ‘don’t be a girl’ about their pain.

Women are told they ‘look too good’ to be experiencing pain.

Women don’t get taken seriously when they ask for help with their pain – and get given more psychological labels and help instead of appropriate investigations and effective analgesia.

I’ve just reviewed a whole heap of research papers looking at the differences between men and women, boys and girls and pain. It doesn’t make for happy reading, and even though I was fully aware of the disparity I have been thunderstruck at how pervasive pain in women is dismissed.

Let’s look at some facts for women in New Zealand.

https://minhealthnz.shinyapps.io/nz-health-survey-2021-22-annual-data-explorer/_w_37711963/#!/explore-indicators

This survey asks the question: Do you have chronic pain that is present almost every day, but the intensity of the pain may vary, and has lasted, or is expected to last, more than six months. This includes chronic pain that is reduced by treatment?

By comparison, Asthma (diagnosed and treated) – 11.4%; Diabetes – 5.2%; Chronic Pain – 22.6%

BUT there is NO national priority for chronic pain, and more women than men report it.

Want more? What’s the major area of pain for women in Aotearoa? According to the Global Burden of Disease, the most significant contributor to years lived with disability for women in New Zealand is – no, not endometriosis, not menstrual pain, but low back pain, followed by migraine. We hear a lot about endometriosis, but rather less about the overall problem of pain for women.

https://vizhub.healthdata.org/gbd-compare/

In reviewing international data I came across this study looking at 11,000 patient records, and evaluating the differences in reported pain intensity between men and women receiving care for the same diagnoses (Ruau et al., 2012).

This was gobsmacking to me. We KNOW that women are more likely to develop chronic pain (many of the studies show a 2:1 prevalence for women with chronic pain – see Fitzcharles et al., 2021) – but are clinicians aware that women report higher pain intensity, lower pain threshold and lower pain tolerance than men in acute pain? For an excellent review of sex differences in neurobiology, take a look at this paper by Presto and colleagues (2022).

But wait, sadly there’s more.

When women seek help for their pain, from childhood their pain is minimised and managed less assertively than men. Here are some examples from my recent wandering through the literature.

Girls are thought to be experiencing less pain than boys…

Earp et al., (2019) replicated a previous study showing that when clinicians were asked to watch a video and rate how much pain a child was experiencing when having a fingerprick blood test. The child’s gender was considered ‘ambiguous’ (so not easily identified as either a boy or a girl) but the participants were told either a boy’s name or a girl’s name, and asked to rate the pain. There were a whole bunch of other questions asked, but I’ll cut to the chase. No, Virginia, your pain is not as bad as Larry’s, and the gender of the observer was irrelevant. The authors said: “if the belief that boys tend to display less pain than girls is what is driving the relevant inferential process—that is, that this particular “boy” must really be in pain—then controlling for that belief should make the between-subjects difference in pain sensation ratings diminish or disappear. Indeed, this is what we find.”

Naamany and colleagues (2019) found that women attending the emergency department with acute renal colic (nasty pain for sure) reported higher pain intensity BUT men were given analgesics more frequently including opioids and more drugs overall than women.

Men reporting cardiovascular-related chest pain were 2.5 times more likely to be referred to a cardiologist than women….(Liaudat et al., 2018).

AND I wasn’t aware that one in three women quit doing daily activities because of menstrual symptoms, but 50% of them never mention this to family/friends or seek healthcare (Schoep et al., 2019).

Folks, it doesn’t get any better and actually gets a whole lot worse when we’re talking about chronic pain…

Samulowitz and colleagues (2018) carried out an exhaustive review of gender disparity in pain literature. It’s well worth a read (but keep the tissues handy, and watch your blood pressure if you are of ‘gentle disposition’). Essentially the findings show that women are actually biologically more sensitive to nociception, are more willing to report pain and apparently it’s more socially acceptable for women to be experiencing pain. BUT women are assigned ‘psychological’ rather than somatic causes for their pain, struggle for legitimacy, have their appearance scrutinized (‘you look too well to be in pain’), are prescribed less and when given analgesia are given less effective pain relief, fewer opioids but more antidepressants (though that could be because women are 2:1 more likely to have nociplastic pains), and give more mental health referrals instead of active rehabilitation. Even the recommendations for rehabilitation differ depending on gender (Wiklund et al., 2016).

Frankly, it’s outrageous.

It sucks to find that women’s pain continues to be trivialised, and women get given poorer treatment. We must change this because, duh, it’s a fundamental human right to be given access to pain management. It’s also a fundamental right to be treated with the same respect and diligence irrespective of your sex or gender. The flow-on effects of ineffective, inappropriate and inadequate pain management on women are profound.

Begin by getting loud about this. Look at your own assumptions. Be willing to question your treatment if you’re a woman. Be willing to review your practice, both men and women.

Earp, B. D., Monrad, J. T., LaFrance, M., Bargh, J. A., Cohen, L. L., & Richeson, J. A. (2019). Featured Article: Gender Bias in Pediatric Pain Assessment. Journal of Pediatric Psychology, 44(4), 403-414. https://doi.org/10.1093/jpepsy/jsy104

Fitzcharles, M.-A., Cohen, S. P., Clauw, D. J., Littlejohn, G., Usui, C., & Häuser, W. (2021). Nociplastic pain: towards an understanding of prevalent pain conditions. The Lancet, 397(10289), 2098-2110. https://doi.org/10.1016/s0140-6736(21)00392-5

Clerc Liaudat, C., Vaucher, P., De Francesco, T., Jaunin-Stalder, N., Herzig, L., Verdon, F., Favrat, B., Locatelli, I., & Clair, C. (2018). Sex/gender bias in the management of chest pain in ambulatory care. Womens Health (Lond), 14, 1745506518805641. https://doi.org/10.1177/1745506518805641

Naamany, E., Reis, D., Zuker-Herman, R., Drescher, M., Glezerman, M., & Shiber, S. (2019). Is There Gender Discrimination in Acute Renal Colic Pain Management? A Retrospective Analysis in an Emergency Department Setting. Pain Management Nursing, 20(6), 633-638. https://doi.org/https://doi.org/10.1016/j.pmn.2019.03.004

Presto, P., Mazzitelli, M., Junell, R., Griffin, Z., & Neugebauer, V. (2022). Sex differences in pain along the neuraxis. Neuropharmacology, 210, 109030. https://doi.org/10.1016/j.neuropharm.2022.109030

Ruau, D., Liu, L. Y., Clark, J. D., Angst, M. S., & Butte, A. J. (2012). Sex differences in reported pain across 11,000 patients captured in electronic medical records. Journal of Pain, 13(3), 228-234. https://doi.org/10.1016/j.jpain.2011.11.002

Samulowitz, A., Gremyr, I., Eriksson, E., & Hensing, G. (2018). “Brave Men” and “Emotional Women”: A Theory-Guided Literature Review on Gender Bias in Health Care and Gendered Norms towards Patients with Chronic Pain. Pain Research and Management, 2018. https://doi.org/https://doi.org/10.1155/2018/6358624

Schoep, M. E., Nieboer, T. E., van der Zanden, M., Braat, D. D. M., & Nap, A. W. (2019). The impact of menstrual symptoms on everyday life: a survey among 42,879 women. American Journal of Obstetrics & Gynecology, 220(6), 569 e561-569 e567. https://doi.org/10.1016/j.ajog.2019.02.048

Wiklund, M., Fjellman-Wiklund, A., Stalnacke, B. M., Hammarstrom, A., & Lehti, A. (2016). Access to rehabilitation: patient perceptions of inequalities in access to specialty pain rehabilitation from a gender and intersectional perspective. Glob Health Action, 9, 31542. https://doi.org/10.3402/gha.v9.31542

New year, new you! 10 Steps to Change Your Life!

Are you setting goals for this year? Did you decide to get fit? Eat healthier? Spend more time with your family? Be more mindful? Read on for my famous 10 steps to change your life!

Bah, humbug!

Reflect for a moment on what you’ve just read. Head to Google and do a search using the terms “New Year” and see what you come up with. My search page showed, amongst all the horrific news of car smashes and events for the holiday season, topics like “New Year Bootcamp: Get rid of your debt”, “cook something new every week”, “read more books”, “create a cleaning schedule you’ll stick to”…

Ever wonder why we do this? Every single year?

First, we buy into the idea that our life right now isn’t good enough. There are improvements we can [read ‘should’] make.

Then we decide what “good” looks like. Better finances, healthier diet, less time on devices, cleaner and tidier house…whatever.

We then read all the things we should do – apparently, improving body, mind and soul is good for… the soul.

The popular “experts” then tell us to use a planner, tick off daily fitness goals, and tackle small actions frequently.

Betcha like anything most of us will fail. Even if we begin with the best of intentions.

This year, I’m not doing “goals” – I’ve bought into the over-use of SMART goals for too long, and I’m rejecting them. Why? Because life begins to look like a whole bunch of tick boxes, things to do, keeping the “eye on the prize” at the end. But when is “the end”? Is it a set of “yes! I’ve done it” achievements? Little celebrations? Or do we feel coerced into setting yet another goal? Can goals prevent us from being present to the intrinsic nature of daily life? I think so, at least sometimes. A goal focus can take us away from appreciating what we have right now, while also detracting from the process of going through each day. We can lose the joy of running, for example, if we’re only looking to the finish line. We can forget the pleasure of fishing in beautiful natural surroundings if we’re only looking to hook a fish!

So, as a start to this year, I’m sitting still. I’m noticing my Monday morning routine as I slurp my coffee and sit at my computer to write my blog. I’m making a choice to be present with my thoughts and ponderings. I’m looking back at the blog posts I’ve made since 2007 – all 1262 of them! – and feeling proud of my accomplishment. I’m revisiting my “why” or the values that underpin my writing. I’m acknowledging that I’ve chosen to put my voice out there, whether others read what I write or not (FWIW readership is low compared with the heady days of 2008 and 2009!). These choices aren’t in a weird pseudo-spiritual mindful sort of way, just a nod to my habits and the underlying reasons for doing what I do.

I’ve been pondering the drive clinicians have to set goals with patients, and to record achievements. As if these exist outside of the person’s context and all the other influences on what a person can and does do. There are even posts declaiming patients for not “doing the work” even after the explanations and rationales are presented, as if the only factor involved in doing something is whether it has a good enough reason for it to be done. This attitude is especially pertinent when a person lives with persistent pain, and is embroiled in a compensation system with expectations for recovery.

I suppose I’m looking for more attention to be paid to strengths people demonstrate as they live with persistent pain. More awareness of the complexity of living with what persistent pain entails (see this post for more). And for us as clinicians to be more content with what is, despite limitations and uncertainty, ambiguity, frustration and limited ‘power’ to make changes happen.

Contentment is at the heart of “fulfillment in life” (Cordaro, et al., 2016). It’s an emotion with connotations of peace, life satisfaction, and, again according to Cordaro and colleagues, “a perception of completeness in the present moment.” In English, contentment invokes a sense of “having enough” and a sense of acceptance whether the situation is desirable or undesirable (Cordaro, et al, 2016, p.224). Contentment, in contrast to happiness, is considered a low arousal state: that is, when we feel content we experience reduced heart rate, skin conductance and is associated with serotonergic activity, while happiness in contrast activates higher arousal states including dopaminergic responses (Dustin et al., 2019). The table below gives some interesting comparisons between the “reward” and the “contentment” states in humans – take it with a grain of salt, but it makes for useful pondering.

When we think about helping people with persistent pain, how often do we consider contentment as a long-term outcome? To be content that, despite all the hard work the person and their healthcare team and their family and colleagues, this person has achieved what they can. Do we even have this conversation with the person? Giving them the right to call it quits with constantly striving for more.

How can we develop contentment for ourselves and for the people we work with? Should we guide people towards activities that foster contentment? These will likely be the leisure activities that take time, that involve giving without a focus on receiving, that calm people, that invoke nurturing (plants, animals, people), and probably those that involve moderate intensity movement practices (Wild & Woodward, 2019). I hope we’ll draw on occupational therapy research and practice, because these activities will likely be long-term practices for daily life contentment, and daily life is our occupational therapy focus.

For ourselves, I suspect fostering contentment will be more difficult. Our jobs, often, depend on finding out what is wrong and setting goals for a future state, not ideal for those wanting to be OK with what is. We often work in highly stressful and demanding contexts with numerous insults to our moral ideals and values. We debate ideas and approaches to our work with vigour. We make judgements about our own performance and that of others. We often find our expectations aren’t fulfilled and that we can’t do what we think/know would be better.

I’ll leave you with a series of statements about contentment compared with other states that can be related to contentment (Cordaro et al., 2016, p.229). It helps clarify, perhaps, what we might do for ourselves in this new year. Happy 2023 everyone!

Cordaro, D. T., Brackett, M., Glass, L., & Anderson, C. L. (2016). Contentment: Perceived Completeness across Cultures and Traditions. Review of General Psychology, 20(3), 221-235. https://doi.org/10.1037/gpr0000082

Dustin, D. L., Zajchowski, C. A. B., & Schwab, K. A. (2019). The biochemistry behind human behavior: Implications for leisure sciences and services. Leisure Sciences, 41(6), 542-549. https://doi.org/10.1080/01490400.2019.1597793

Lustig, R. (2017). The hacking of the American mind: The science behind the corporate takeover of our bodies and brains. New York, NY: Avery.

Wild, K., & Woodward, A. (2019). Why are cyclists the happiest commuters? Health, pleasure and the e-bike. Journal of Transport & Health, 14. https://doi.org/10.1016/j.jth.2019.05.008

The joy of having many data points

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

Frustration in the clinic

I’m prompted to write this post because it’s something I see in social media so often – a clinician gets frustrated. Things don’t work. The person getting treatment doesn’t respond in the way that was expected. The person doesn’t look like what the clinician usually sees. The evidence doesn’t fit with practice. All the things! So I thought today I’d write about emotions and thoughts that might turn up – and what might underlie those feelings. (For people living with pain – we also have frustration in the clinic. Things don’t work out. The therapist isn’t what we expected. I’ll write more about this soon!)

Emotions are a complex reaction pattern, involving experiential, behavioral and physiological elements (https://dictionary.apa.org/emotion). From a cognitive behavioural perspective, an event happens, we appraise it (judge it), and we experience an emotion – then we do something as a response. It’s much more complex than this, and each part interacts with the others – so we end up with a big diagram looking something like this: (from – https://www.researchgate.net/figure/Cognitive-behavioral-therapy-model-of-depression_fig1_338695579).

Instead of “depressive”, just put in “beliefs/expectations about who I am and what I can expect from myself”. This is a pretty generic model in CBT, and is well-established even if there are plenty of arguments about accuracy and adequacy!

Clinicians generally want to help. Yes, some are in it for fame or fortune (choose something else, kthx), but on the whole people enter a clinical profession because they think they can do some good, and people will “get better.” Our communities hold long-standing expectations about what seeing a health professional should entail: read Benedetti’s “The Patient’s Brain” for a much more detailed description of the historical and evolutionary basis for a therapeutic encounter.

Why does this matter? Because it sets the scene for how we think a therapeutic encounter should go.

Rules and assumptions about what “ought” to, or “should” happen often underlie emotions.

We’re happy when all the things line up and the patient does what we expect of patients while the clinician does things that work. When things don’t go to plan (ie our expectations are violated) that’s when we get some feelings, and they can be pretty big.

What do we expect from patients?

Despite moves towards person-centred care where patients are seen as people and clinicians offer options rather than dictate orders, our societies still hold expectations about the roles a patient and a clinician should play.

Patients are expected to seek help when they’re sick. They’re expected to be truthful about their symptoms, and tell clinicians everything that is relevant about their condition – AND about any other aspect of their health, even if it’s not immediately relevant to their current problem. Symptoms experienced by patients are expected to be what the clinician expects, and the disease a patient has should fit within “typical” parameters (usually based on males). Patients are also expected to follow instructions, not do things that go against instructions, and of course, to get better. Patients are meant to be grateful for their treatment, even if it’s disruptive, has unpleasant side effects, or isn’t 100% effective. Patients should do their best all the time.

As a corollary, clinicians have a huge number of expectations they take on (and are given!). Some of us have these explicitly handed to us during our training, while others find they’re an implicit set of assumptions that we adopt, perhaps in the guise of “being professional.”

What do we expect from clinicians?

Clinicians expect to be in control in the clinical encounter. We’re expected to know what to ask about, and from this, what to test for. We’re expected to have the answers, and be right. We’re also expected to be calm, caring and focused – even when our personal lives are topsy-turvy. We’re meant to know what the patient wants, and how to give that to them. We’re also expected to be up-to-date, do no harm, change our practice according to evidence (even when that evidence is contradictory, or just emerging), and to stay interested in our work even if we’ve been doing it for years.

We’re expected to know our scope of practice, but practice using a broad “whole person” framework even if we were never trained to do this. We think we should be compassionate and caring, even if we were selected for training on the basis of our academic prowess and not on emotional literacy. We must take on responsibility for outcomes, even though we’re not there to “make sure” the patient “does what they’re told” in their own time. We assume when we tell someone to do something, they’ll drop everything in their life to do it – because their health should matter most, and even when other things in their life matter more.

Clinicians can be expected to practice independently from the moment they qualify, and are either “right” or “wrong” and never shades of in between. Clinicians expect that if something goes wrong, and the person doesn’t get better, it’s either the person’s fault (they didn’t do what they should have done), or the clinician has done something wrong and made a wrong diagnosis, or chosen the wrong treatment (or the treatment was right but the intensity was wrong…. so just do it again). And clinicians shouldn’t ask for emotional help because that means they’re “too emotionally invested” or “not distanced enough.”

Expectations suck

We all have them. And the ones I’ve listed above, while not always present, often underpin the way we expect clinical encounters to go. Many of them are implicit, so we don’t even realise we hold them – until BAM! Something goes wrong.

When expectations are violated, we feel emotions and some of these can be pretty strong. Many are less strong, just little niggles, little irritations, a bit of cynicism, some disappointment, some frustration. And they go both ways: people seeking help, and people trying to help. Over time, violated expectations feel like your head hitting against a brick wall, or swimming against the tide, or just plain demoralisation or even burnout.

Ways through them

Some of us have professionally-endorsed support systems to help us. Occupational therapists and psychologists have mandatory clinical supervision with someone who is there for you, who supports your development as a clinician, who challenges your assumptions, who pokes and prods at your reactions, who encourages taking a broader view. Individual clinicians in other professions may also pick up on using supervision in this way.

Some of us don’t have that kind of support. So we seek it elsewhere – I suppose, in part, I started writing this blog those years ago to “find my tribe.” Social media is one way we get affirmation, validation and even (sometimes!) great ideas to help us shift our approach.

Some clinicians leave their profession, do something else that’s more lucrative and less emotional effort. Some move out of practice and into academia. Some use “outside work” interests to blow off steam, or give emotional space.

Some of us are a little fused with the assumptions we hold. It’s hard to create a little space around those assumptions, because they’re held so tightly (or they’re so deeply buried). When we do get a tap on the shoulder suggesting our beliefs are out of whack it can feel so terribly humiliating, so inherently WRONG that we shut off, or bite back.

Creating “wiggle room”

Slowing down is a good way to begin creating some space to feel what is showing up when we’re feeling frustration. This could be by taking one or two minutes at the end of a session to be present. Yes, a little mindfulness to notice what is present in the body. To be OK with being aware of emotions, thoughts, and body sensations. NOT TO CHANGE THEM! To simply be with them. (An explanation here: https://www.youtube.com/watch?v=v9NkUomOO_w). This helps in many ways, but it does not (and isn’t intended to) reduce them. It helps you notice that you’re having feelings. It helps you pay attention to your own state of mind. It can create a moment to ask yourself “I wonder why I feel this way?” It can help you be more present with the next person you see because you’re not carrying those feelings into the next encounter.

Reflective practice is another way to create some space to be human, feel things, be curious about why they happen, and check in with your own values. A great resource that’s freely available is Positive Professional practice: a strength-based reflective practice teaching model – it might be a ‘teaching’ model, but clinicians teach All The Time!

Taking small steps, making small changes

The first step towards making a change is knowing that it’s needed. And the second is knowing that it’s possible. The third? Knowing what to do. I hope these suggestions help a little in this seldom-discussed aspect of practice. My own preference is to question WHY do we hold these expectations? WHO made them a thing? WHAT purpose do they serve? WHEN might those expectations be a good thing – and when might they not? WHERE can we nudge just a little to make change? And preferably, as clinicians, I think it’s OUR job to make the adjustments because we’re not ill or sore or seeking help.

Some references:

Dobkin, P. L., Bernardi, N. F., & Bagnis, C. I. (2016). Enhancing Clinicians’ Well-Being and Patient-Centered Care Through Mindfulness. Journal of Continuing Education in Health Professions, 36(1), 11-16. https://doi.org/10.1097/CEH.0000000000000021

Huft, J. (2022). The History and Future of the Sociology of Therapy: a Review and a Research Agenda. The American Sociologist, 53(3), 437-464. https://doi.org/10.1007/s12108-022-09534-3

McGarry, J., Aubeeluck, A., & De Oliveira, D. (2019). Evaluation of an evidence-based model of safeguarding clinical supervision within one healthcare organization in the United Kingdom. International Journal of Evidence-Based Healthcare, 17 Suppl 1, S29-S31. https://doi.org/10.1097/XEB.0000000000000180

Spencer, K. L. (2018). Transforming Patient Compliance Research in an Era of Biomedicalization. Journal of Health and Social Behavior, 59(2), 170-184. https://doi.org/10.1177/0022146518756860

Ways to stop good clinicians leaving pain management (ii)

I’ve been asked to amend (actually, to remove) these two posts, so I’ve altered the opening sentence – you’re reading it now. I’ve also added some comments to preface these two posts.
I’m an old hack when it comes to teamwork and pain management: I’ve worked in this field a long time. I’m familiar with reactions to both interpersonal differences within a team (and the myriad ways these can be expressed), and to the discourse that happens when posting a publicly available message. In fact, that’s why I publish on social media: so we can have open conversations rather than ones hidden behind paywalls, or in rarified academic settings. Humans are odd, and when poked – even when poked with good evidence – want to react, to bite back. The following comments are not about any specific organisation. I’ll repeat that: comments about what we do in healthcare (ie bullying – nurses call this ‘horizontal violence’, stigmatising, excluding, not supporting etc) in the two articles I’ve written so far on how to prevent good clinicians do not relate to any one organisation. They are based on personal experience (my own) and experiences I’ve read in the literature.

Last week I started a series of posts on how we can stop good clinicians leaving pain management. I began with funding because, at least in New Zealand, lack of funding is a significant part of the problem of staff retention.

Now I want to look at how we prepare clinicians to work in pain management.

One of the major barriers in New Zealand is the dominance of musculoskeletal rehabilitation in physiotherapy clinics around the country. How could direct access to musculoskeletal rehabilitation be a bad thing, you ask? Well, it’s mainly because pain management is not musculoskeletal rehabilitation – and yet most of the workforce for pain management here comes from musculoskeletal physiotherapists.

I like physiotherapists, some of them are even very good friends! And I recognise that good physiotherapists have moved a long way from the old “back school” staff sergeant approach! Many physiotherapists have developed their skills well beyond analysing pelvic tilt and using “special tests” with limited inter-rater reliability and even less predictive validity. There are good physio’s who are skilled in Acceptance and Commitment Therapy, who routinely look at values and use motivational approaches in their clinical practice.

But, how well are new graduate physiotherapists (and indeed other entry-level health professionals) prepared for chronic pain work? (remember that many clinics in NZ employ entry-level therapists because they’re inexpensive, and chronic pain management isn’t a very profitable area – and staff turnover is a thing).

Unlike acute and subacute musculoskeletal rehabilitation, regression to the mean (ie returning to a baseline level of capability) doesn’t happen much in chronic pain rehab. Natural history doesn’t happen either, not four or more years after the original onset. Most treatments for chronic pain show very small effect sizes on both pain intensity and disability.

Progress towards goals is slow, and there are many – many! – flare-ups, set-backs, detours and plateaus. Because pain problems have lasted longer than expected, people have had time to worry, to be given inaccurate information, to have had poor sleep for ages, to have stopped doing the things that bring life into life, to have had several unsuccessful treatments – consequently, people with chronic pain often hold negative expectations about how effective a treatment will be.

How well do we prepare entry-level clinicians for the challenges of treatments not working? Despite the therapist “doing all the right things”?? Do we prepare them for the ambiguity and uncertainty of working without a clear diagnosis? without an algorithm? without a “simplifying process”? Chronic pain is complex!

How well do we prepare entry-level therapists not to take responsibility for a person’s outcomes? Or do we inculcate them into the idea that they must “get it right” all the time or they’ve “done something wrong”?

Do we spend so much time teaching a certain school of therapy, or set of special tests, that we forget to help them learn to listen well first? Do we teach them that mind and body are separate – and that psychological and psychosocial only come into play when “the bio” has failed to respond to treatment? Do we imply this, even inadvertently?

When do we teach entry-level therapists how to deal with therapy failure? How to work in the dark? How to revise their formulation when a treatment doesn’t have the intended effect? Where do we teach entry-level therapists how to seek and accept supervision – and how do we help them view supervision as a supportive opportunity to develop as a person and therapist?

And how well do we prepare entry-level clinicians to work well in a team, where they’ll come into contact with other clinicians seemingly “stepping into my scope”? In other words, where other clinicians have broad skills and experience, and who do what they do… Do we teach undergraduates how to be confident enough in their professional value that they stop being defensive?

Solutions, that’s right. I was going to suggest solutions.

Solutions include much more time working with other professions during training – and not just the ones handy to where they’re being trained. Solutions include ensuring the process of clinical reasoning is emphasised rather than the outcome. Solutions involve teaching undergraduates that they will carry on learning and that more experienced therapists from other professions will teach them a lot. Solutions might include ensuring that all students spend regular time with a supervisor who is not there to “correct” them, but instead to foster their self-reflection, to offer them support when they’re feeling overwhelmed, to encourage them to be OK to feel lost and not know the answers. And perhaps solutions involve recognising that chronic pain management is a specialist area of practice, and it is not musculoskeletal rehabilitation with a psychosocial twist.

Gordon, D. B., Watt-Watson, J., & Hogans, B. B. (2018). Interprofessional pain education-with, from, and about competent, collaborative practice teams to transform pain care. Pain Reports, 3(3), e663. https://doi.org/10.1097/PR9.0000000000000663

Lindblad, T. L. (2021, Jun). Ethical Considerations in Clinical Supervision: Components of Effective Clinical Supervision Across an Interprofessional Team. Behavior Analysis in Practice 14(2), 478-490. https://doi.org/10.1007/s40617-020-00514-y

O’Carroll, V., Owens, M., Sy, M., El-Awaisi, A., Xyrichis, A., Leigh, J., Nagraj, S., Huber, M., Hutchings, M., & McFadyen, A. (2021, May-Jun). Top tips for interprofessional education and collaborative practice research: a guide for students and early career researchers. J Interprof Care, 35(3), 328-333. https://doi.org/10.1080/13561820.2020.1777092

Perreault, K., Dionne, C. E., Rossignol, M., Poitras, S., & Morin, D. (2018, Jul). What are private sector physiotherapists’ perceptions regarding interprofessional and intraprofessional work for managing low back pain? Journal of Interprofessional Care, 32(4), 525-528. https://doi.org/10.1080/13561820.2018.1451829

Steuber, T. D., Andrus, M. R., Wright, B. M., Blevins, N., & Phillippe, H. M. (2021). Effect of Interprofessional Clinical Debates on Attitudes of Interprofessional Teams. PRiMER, 5, 14. https://doi.org/10.22454/PRiMER.2021.154149

Ways to stop good clinicians leaving pain management (i)

I thought I’d look at what we can do to stop good clinicians leaving pain management.

While our jurisdictions have differences in pay rates, reimbursement approaches and treatment codes, at the heart of good healthcare is good people who want to help. So why, when healthcare is populated with caring clinicians, do we strike bullying, lack of support for one another, non-existent teamwork, and poor career pathways? What is going on?

I’ll tackle these in bite-sized chunks, starting with the funders. And of course, I want to point out some of the contributing factors.

Funders

Funders (insurers, agencies paying for treatment) have at their heart, a fear of being taken for a ride. People with pain can be viewed with suspicion because their problems cannot be imaged. Why else spend such inordinate amounts of money on investigating whether someone ‘meets criteria’ for treatment?

Historically in New Zealand, we have one national accident insurer – a no-fault, 24/7 insurance for any accidental injury sustained in work, out of work, in school, while on the roads, wherever. At times this insurer has been fairly generous – certainly when I started working in this area in the 1980s there were plenty of people with chronic pain that I saw having had 300 or more physiotherapy sessions. “Passive” therapy (hot packs and ultrasound) was carried out routinely. Our insurer certainly got stung by the over-use of unhelpful treatments and since then has systematically reduced access to passive therapies, and also seems to have physiotherapy practice in its sights. Sadly, it has not been quite as focused on reducing unhelpful surgeries, repeated injection procedures, and medical reports denying that chronic pain is a thing.

The community pain contracts funded by our insurer were, at initial conception, a good thing. Bring community-based therapists together to form local pain teams to respond early to people at risk of developing long-term disability associated with pain. Lots of new set-ups emerged with lots and lots of cobbling teams together: ad hoc coalitions of clinicians who didn’t know one another. Set on a background of messy referral processes, limited understanding of how the contracts worked, and a very limited budget, now was the time for large international groups to swoop in and sweep up small practices to form national organisations which simplified contracting for our insurer. And so they did.

Large organisations offer benefits to insurers. The risk of a single provider failing is reduced because the uneven nature of referrals is smoothed across the country. There are economies of scale from an administrative point of view. Some organisations have employed excellent people as clinical leaders for pain teams.

And yet… limited understanding of what teamwork is in pain management and how teams need to be supported and developed, combined with poor funding, and scarcity of skilled and specialised clinicians has led to teams on paper. Teams who rarely, if ever, meet; teams with no common model of pain; teams who don’t work collaboratively – serial therapy? not even that – a series of disjointed, uncoordinated therapies where the physical exercise programme is delivered by an entry-level physiotherapists a month or more before the person sees a psychologist who may not have any training or knowledge about pain management, while funding is spent on an unnecessary pharmacy session, and a pain assessment by a pain specialist who are scarcer than hen’s teeth and far more expensive than the rest of the entire programme combined.

What’s the answer? As usual, more than one…

Adequate funding for team meetings – preferably face-to-face, and preferably weekly. Co-location helps
Ensuring the team has a common model of pain.
Workforce stability – outcomes reduce if the team has a high staff turnover
Effective orientation and induction to the team
Processes and structures that foster sharing information that often doesn’t get shared
Training in how to negotiate, collaborate, amalgamate differing opinions
Training and recognition of specialised knowledge that transcends individual professions (in other words, professionals become transprofessional rather than silos)

And what of these organisations swooping in to carry out cookie-cutter approaches?

I am not an advocate of private providers working in health. What we’ve seen here since 2017 and the community pain contracts is the top slice of money heading off to shareholders and managers with fancy new cars, little to no career pathway planning for senior clinicians, an increase in placing newly graduated therapists into pain management without adequate clinical or emotional support, and an overall high level of turnover amongst clinicians in the field.

This is partly because our insurer has restricted pain funding. It is also partly because these organisations (including the insurer) fail to recognise that chronic pain management is a specialised field with specialised requirements. It’s not a place for new graduates – but if you have limited profit from programmes, what would you do? Yep, you’d employ clinicians you don’t have to pay as much to, and allow the senior clinicians to leave. You’d avoid offering effective clinical and emotional supervision because this is seen as a cost to the company. You’d fund weekend courses in pain management, but not fund time for teams to integrate this knowledge. Similarly, you wouldn’t fund meetings or induction because you’d see these as an unnecessary cost. After all, isn’t pain management simple?

The two most heartbreaking aspects of this current situation are (1) the burnout of clinicians who initially put heart and soul into their work, do their best to maximise the scant funding, work long hours, seek contracts that might offer the person/patient/client something useful – but do so and obscure just how poorly the funding model is working. And (2) the people with pain who are offered disjointed therapy (not a team approach) delivered by junior therapists who feel unsupported and don’t have the skill or knowledge to work in this area, and who deliver cookie cutter treatments because of this and leave. The patients receive ineffective therapy but the insurer can tick the box that they’ve “had pain management.”

Is this the view of an old hack who wants the glory days to return? Maybe – but I feel for the people with pain who are just not getting good pain management. Access to services may be there – but access to unhelpful, cookie cutter, disjointed therapy from disheartened clinicians does not lead to good outcomes. And the sad thing is that there’s enough teamwork research in pain management to show what does work.

NZ Pain Society Report on the impact of a new contract: request this from the NZ Pain Society

Buljac-Samardzic, M., Doekhie, K. D., & van Wijngaarden, J. D. H. (2020, Jan 8). Interventions to improve team effectiveness within health care: a systematic review of the past decade. Human Resoures for Health, 18(1), 2. https://doi.org/10.1186/s12960-019-0411-3

Griffin, H., & Hay-Smith, E. J. C. (2019). Characteristics of a well-functioning chronic pain team: A systematic review. New Zealand Journal of Physiotherapy, 47(1).

Matthew, O. T., & Samuel, E. H. (2021). Examining Team Communication and Mutual Support as Drivers of Work Performance among Team Members. Asian Research Journal of Arts & Social Sciences, 45-54. https://doi.org/10.9734/arjass/2021/v13i430223

O’Donovan, R., De Brun, A., & McAuliffe, E. (2021). Healthcare Professionals Experience of Psychological Safety, Voice, and Silence. Frontiers in Psychology, 12, 626689. https://doi.org/10.3389/fpsyg.2021.626689

Zajac, S., Woods, A., Tannenbaum, S., Salas, E., & Holladay, C. L. (2021). Overcoming Challenges to Teamwork in Healthcare: A Team Effectiveness Framework and Evidence-Based Guidance. Frontiers in Communication, 6(6). https://doi.org/10.3389/fcomm.2021.606445

Scopes, roles, interprofessional practice and person-centred healthcare

A topic that almost immediately gets my hackles up is the one of scopes and roles in pain management and rehabilitation. It’s like “Oooh but that’s MY stuff, get out of it!” and I can see Gollum saying “my preciousssss”…

I trained and graduated in 1984. As a raw newbie occupational therapist I couldn’t articulate much of what my profession brought to healthcare, except that I knew “doing”, “activities” or “occupation” was important to human wellbeing, and that I’d been trained to analyse these. I’ve learned a lot since then and got a PhD in the process. Developing as people and as clinicians is, I hope, deeply embedded in us as professionals.

Interprofessional practice is a model of healthcare recommended in pain management and rehabilitation (Oslund, et al., 2009). Interdisciplinary/interprofessional teams involve different health professionals working alongside one another using their areas of expertise, but where all use a common over-arching model such as a biopsychosocial approach. Teams meet regularly to collaborate on treatment goals and priorities (Ruan & Kaye, 2016). There is limited hierarchy and extensive communication, cooperation, and overlap between team members (Körner, 2010).

True interprofessional practice is rare. Why? Because teams on paper are not teams. Teams need time together both formally and informally, stability amongst members, a pool of common knowledge as well as an understanding of what each team member brings in to the mix. Needless to say, high trust is crucial, along with ongoing communication (Zajak et al., 2021). We can’t just use professional labels to know what another profession can offer because we [should] keep on developing.

One of the largest contributors to poor interprofessional teamwork is lack of confidence. Not just lack of confidence in the skills of the other team members, but lack of confidence in one’s own professional contribution. High trust in one another, and yourself is critical.

When you’re feeling uncertain and find it hard to articulate what you bring to a team, any encroachment on “your” turf (call it scope) will likely engender a worry that you’re unnecessary. That others are “taking over” – and in turn, this can mean you search for faults in what other team members do because this helps affirm your rights and your specialness. You might want to rigidly control who does what in a team. It boosts your sense of worth but at the expense of other team members, and more importantly, at the expense of the person the team is trying to help.

The thing is, the person with pain does not care which person in a team works with them. What they care about is that the clinician is knowledgeable, and empathic. Trustworthy. The quality of the interpersonal relationship accounted for 54.5% reduction in pain in one study by Fuentes (Fuentes et al., 2014). People with pain want to know that their individual needs have been taken into account in their treatment plan (Kinney et al., 2020).

If you’re finding it hard to work in a team, perhaps feeling vulnerable about your worth, try this:

Ask your team to meet for an hour, tops.

Ask each member of your team to say what they bring to the team – not just their profession, but what else? Consider age, humour, cultural background, additional courses, personal interests outside of work, the “social secretary”, the “librarian”…and professional skills.

Pool all of these contributions on a big piece of paper – use post-it notes of different colours for each person.

Group similar contributions together in the middle of the paper – and spread unique contributions around the outside.

Review the paper and ask each participant to add any contributions they’ve just been reminded of.

Take a good look at the common contributions and the unique ones: these are what make up your team and they’re there to use for better person-centred care.

You can add some reflective questions to this activity.

What are the areas of overlap? It could be goal-setting, offering information about pain, movement practices, addressing fear of pain/reinjury, helping build confidence…
What areas of uniqueness are there? These could be hypnosis, knowledge translation from clinic to daily life, exercise prescription, the ability to write a prescription for medications
What surprised you? This could be the degree of overlap, or the contribution you didn’t expect from someone, or perhaps a gap in the team’s knowledge or skills
What shows up in yourself as you review these contributions? These could be “yeah, right, I don’t believe you can do THAT!” or “but I can do that too!”

Handling your response to what shows up to that last question is where the enormous value of this activity lies. Remember, the team is there for the person with pain, not for you as clinicians. If you think someone is claiming a contribution you can do with more skill, this only means that you can offer that person help from time to time. If you think that you’d like to contribute in an area and you didn’t add that as one of your contributions, now is the time to put it on the paper.

Take a copy of that piece of paper, and keep it close to you.

Your mission from then on, should you choose to accept it, is to review this set of contributions when you are next developing a treatment plan for a person seeking your help. Choose the combination of clinicians that offers the range of skills and knowledge, the interpersonal skills suited, and the availability of each clinician so that the person you hope to help will be seen by a team, and not just a set of individual clinicians. Oh and add in a good case formulation as well…

Remember: it’s all about the person in person-centred pain management and rehabilitation.

Fuentes J, Armijo-Olivo S, Funabashi M, Miciak M, Dick B, Warren S, Rashiq S, Magee DJ, Gross DP. (2014). Enhanced therapeutic alliance modulates pain intensity and muscle pain sensitivity in patients with chronic low back pain: An experimental controlled study. Physical Therapy. 94:477–89.

Kinney, M., Seider, J., Beaty, A. F., Coughlin, K., Dyal, M., & Clewley, D. (2020, Aug). The impact of therapeutic alliance in physical therapy for chronic musculoskeletal pain: A systematic review of the literature. Physiotherapy Theory and Practice, 36(8), 886-898. https://doi.org/10.1080/09593985.2018.1516015

Körner, M. (2010). Interprofessional teamwork in medical rehabilitation: a comparison of multidisciplinary and interdisciplinary team approach. Clinical Rehabilitation, 24(8), 745-755. https://doi.org/10.1177/0269215510367538

Oslund, S., Robinson, R. C., Clark, T. C., Garofalo, J. P., Behnk, P., Walker, B., Walker, K. E., Gatchel, R. J., Mahaney, M., & Noe, C. E. (2009). Long-term effectiveness of a comprehensive pain management program: strengthening the case for interdisciplinary care. Baylor University Medical Center Proceedings, 22(3), 211-214. https://doi.org/10.1080/08998280.2009.11928516

Ruan, X., & Kaye, A. D. (2016). A Call for Saving Interdisciplinary Pain Management. Journal of Orthopaedic and Sports Physical Therapy, 46(12), 1021-1023. https://doi.org/10.2519/jospt.2016.0611

Wampold, B. E. (2018). The Therapeutic Value of the Relationship for Placebo Effects and Other Healing Practices. International Review of Neurobiology, 139, 191-210. https://doi.org/10.1016/bs.irn.2018.07.019

Zajac, S., Woods, A., Tannenbaum, S., Salas, E., & Holladay, C. L. (2021). Overcoming Challenges to Teamwork in Healthcare: A Team Effectiveness Framework and Evidence-Based Guidance. Frontiers in Communication, 6(6). https://doi.org/10.3389/fcomm.2021.606445

Women, partner violence and pain

As the potential for greater repression of women’s autonomy grows (Afghanistan, United States, Mexico), along with racist and misogynist statements from business leaders (DGL CEO Simon Henry) it’s timely to look at pain in women. We already know that more women than men present with persistent pain (Blyth, n.d.), while women who are seen for their pain are more often misdiagnosed, offered psychiatric medication or psychological intervention only and have their experiences dismissed as “hysterical, fabricated, or nonexistent” (Samulowitz, et al., 2018). My daughter, when attending Emergency Department was offered a paracetamol and told “there’s no cure for being a woman” when seeking help for an ovarian cyst. Period pain is considered “normal” (Drabble et al., 2021). Pain in women is not a sexy topic.

Intimate partner violence is common among women. 27% of women who have had a partner report violence perpetrated against them. 24% of young women aged between 15 – 19 years report violence. Low-income countries reporting higher levels of intimate partner violence, and while data was not available for the past two years of covid-19 disruption, it’s expected that higher levels of violence are probable (Sardinha et al., 2022).

What about the intersection between partner violence and persistent pain? (BTW violence is defined as emotional, physical, or sexual harm experienced in a current or former intimate relationship and includes stalking, psychological aggression such as coercion, as well as physical and sexual violence).

Persistent pain is one of the most commonly reported health consequences of intimate partner violence (Walker, 2022), and women are more likely to be the recipients of partner abuse than men. Yet – open conversations about violence and persistent pain in women, recognising the signs and symptoms of partner violence in people seeking help for persistent pain, and adequate approaches to treatment are rare. Women may not disclose their situation for fear of being stigmatised, labelled unfairly, or having their pain – and their situation – trivialised.

Walker and colleagues (2022) carried out a systematic review of studies exploring the types of pain women experienced in association with partner violence, the severity of that pain, and the impact of pain on the person. They found that while pelvic pain was common amongst women who had been sexually abused, women also reported chest pain, back pain, neck pain, arthritis, and stiffness in joint or muscles, more frequent headaches, and more back pain – furthermore, women who had experienced partner violence reports higher pain severity, with 75% of women indicating moderate to severe pain, and the longer a women had been in an abusive relationship, the more likely they were to report higher intensity pain.

Interestingly, disability from persistent pain wasn’t measured often – only two studies from 12 included in the final review – but women with persistent pain from partner violence reported higher pain-related disability. They also reported worse impact on their mental health – more PTSD, anxiety and depression, with depression being one of the key mediator between a history of partner violence and ongoing pain.

The authors of this study (Walker et al., 2022) point out that it’s likely that women who have sustained partner violence and experience persistent pain are “not being adequately identified and responded to in clinical settings” – and that the fear of not being believed and the stigma of being on the receiving end of partner violence likely limits how many women openly discuss their situation.

Isn’t it time to get women’s pain prioritised? To get political about systems and processes that fail women? Isn’t it time to shift the narrative around women’s menstrual pain? To acknowledge that women are not mini men?

Finally, when we consider pain rehabilitation, we need to not only recognise that women have different priorities and goals for their lives than men, we also need to understand that doing rehabilitation is more complex for women than men – women report more difficulty prioritising their own rehabilitation over other responsibilities in their life (Côté & Coutu, 2010). Women may not even be referred for rehabilitation as often as men (Stålnacke et al., 2015). It’s time to prioritise understanding the lived experience of women as they pursue help for their persistent pain – and then do something different.

Blyth, F. (n.d.). Chronic pain in Australia: A prevalence study. Retrieved May 12, 2019, from http://www.ncbi.nlm.nih.gov/ pubmed/11166468

Daniel Côté & Marie-France Coutu(2010)A critical review of gender issues in understanding prolonged disability related to musculoskeletal pain: how are they relevant to rehabilitation?,Disability and Rehabilitation,32:2,87-102,DOI: 10.3109/09638280903026572

Drabble, S. J., Long, J., Alele, B., & O’Cathain, A. (2021). Constellations of pain: a qualitative study of the complexity of women’s endometriosis-related pain. British Journal of Pain, 15(3), 345-356.

Samulowitz, A., Gremyr, I., Eriksson, E., & Hensing, G. (2018). “Brave Men” and “Emotional Women”: A theory-guided literature review on gender bias in health care and gendered norms towards patients with chronic pain. Pain Research & Management, 2018. https://doi.org/10.1155/2018/6358624

Sardinha, L., Maheu-Giroux, M., Stöckl, H., Meyer, S. R., & García-Moreno, C. (2022). Global, regional, and national prevalence estimates of physical or sexual, or both, intimate partner violence against women in 2018. The Lancet, 399(10327), 803-813.

Stålnacke, B., Haukenes, I., Lehti, A., Wiklund, A., Wiklund, M. et al. (2015)
Is there a gender bias in recommendations for further rehabilitation in primary care of patients
with chronic pain after an interdisciplinary team assessment?.
Journal of Rehabilitation Medicine, 47(4): 365-371
http://dx.doi.org/10.2340/16501977-1936

Walker, N., Beek, K., Chen, H., Shang, J., Stevenson, S., Williams, K., Herzog, H., Ahmed, J., & Cullen, P. (2022). The Experiences of Persistent Pain Among Women With a History of Intimate Partner Violence: A Systematic Review. Trauma Violence Abuse, 23(2), 490-505. https://doi.org/10.1177/1524838020957989

Rehab Fails: What goes wrong in rehab 4

It’s not hard to choose rehab fails, the problem is more about when to stop! I tell a lie, it’s more about how to make changes so these things don’t happen.

Today’s #rehabfail is all about attempting to carve bits of a person off so each profession gets “their” bit to do with what they will. Oh boy, this is a doozy, and it comes to me off the back of seeing the return of the age-old argument about whether pain is “all about the bio” or whether the person gets a look-in. Cuz if it’s all bio then we just treat that bio and be done with it, right? It’s a question that also arises when we begin to ask questions about what the person understands about their pain and disability, when they <gasp!> show that they’re frustrated, demoralised, maybe sad or grieving for what they can’t do….

If I had a dollar for every time I’ve heard someone say “oh but I’m stepping out of scope” – usually in response to a suggestion that they incorporate cognitive behavioural principles in their work, or when someone says it might be a good idea to look into psychosocial factors – I would be wealthy and retired. I cannot believe how often therapists with a primarily physical orientation seem to think that asking someone how they’re feeling about their situation, what they understand might be going on, what they prefer, how they’re sleeping, how they’re getting on with their family… ALL these things is “out of scope!”

Seriously folks. Since when did being a human communicating to another human about how they are in the face of pain and disability turn into a “OOooh but I’m not a psychologist” kind of fear? Who else is going to be able to guide someone to a psychologist unless it’s the insightful clinician who is sensitive to when someone is feeling pretty rotten?

Another part of this chasm between “mind” and “body” is the idea that psychosocial factors are only relevant if or when the person “fails” therapy. Who failed, huh? And where did the idea that psychosocial factors are all negative come from? We all have psychosocial factors in our lives: our temperament, memories, assumptions, relationships, goals, routines, job, choices are all psychosocial, and some of them are even pretty positive!

The siloing of professions particularly in musculoskeletal pain rehabilitation is one of the least helpful things I’ve seen in health. The second is to have a “team on paper” where the “team” members do exactly the same things they do when working as a solo practitioner. Serial monotherapy does nothing for people living with pain. What I mean by this is every doing their therapy concurrently but failing to talk to one another, failing to modify what they do to suit the overall needs of the person, failing to have a common understanding of what one another do, and failing to support one another. How confusing is that for the person getting treatment?

Now I am not suggesting that psychologists should become physiotherapists, or occupational therapists become pharmacists, or even a full transprofessional approach (though this is something our NZ health ministry is aiming for over time). I am simply suggesting these things:

Know that whole people are seeking help, not a knee or a belly pain or a back. Pains are experienced by people.
Be human and listen to (and ask about) human things like: how is your job going? what’s your sleep like at the moment? what do you think is going on with your pain, what is your theory? how are you feeling in yourself at the moment? Open-ended questions about human experiences and habits – and follow up with more open-ended questions, and lots of reflective statements. Do this from day one. For everyone.
Take some time to sit in with someone from a different profession. Make friends with them. Go have a coffee with them. See how they work with someone in common. Let them know this isn’t so you can be them, but so you can help your patients/clients understand a bit more about what seeing them might look like.
Read about “whole person rehabilitation.” Matt Erb and Arlene Schmid’s book is awesome (and not just because I wrote a chapter in it! So did a heap of people! – click.)
Dip your toe into understanding your patient’s life. Ask questions that help you understand how they’ve made the decisions they have. Nobody gets up in the morning to do dumb things that might hurt them: there are logical reasons – to them – for why they do what they do. We just need to get our heads around their reasons to begin to tease out the assumptions they hold (and we hold) that have influenced their choices. Remember we all do this.
Never, ever think that you’re treating a back, or a knee, or a headache or a belly pain. You are always working with a person who is experiencing pain in a part of their body, and that pain has enough meaning for them to decide to ask for help. That’s what we’re actually working with.

Here are some readings discussing how we might build teamwork and whole person rehabilitation:

Bashir, U., & Siddiqui, A. S. (2021). Teamwork in chronic pain management and the way forward in low and middle-income countries. Anaesthesia, Pain & Intensive Care, 25(2). https://doi.org/10.35975/apic.v25i2.1477

Cartmill, C., Soklaridis, S., & David Cassidy, J. (2011, Mar). Transdisciplinary teamwork: the experience of clinicians at a functional restoration program. J Occup Rehabil, 21(1), 1-8. https://doi.org/10.1007/s10926-010-9247-3

Cassell, E. J. (2011). Suffering, whole person care, and the goals of medicine. In T. A. E. Hutchinson (Ed.), Whole person care: A new paradigm for the 21st century (pp. 9-22). Springer. https://doi.org/10.1007/978-1-4419-9440-0

Griffin, H., & Hay-Smith, E. J. C. (2019). Characteristics of a well-functioning chronic pain team: A systematic review. New Zealand Journal of Physiotherapy, 47(1). https://doi.org/https://doi.org/10.15619/NZJP/47.1.02

Maynard, M. T., & Gilson, L. L. (2021). Getting to know you: The importance of familiarity in virtual teams. Organizational Dynamics, 50(1). https://doi.org/10.1016/j.orgdyn.2021.100844

Mallick-Searle, T., Sharma, K., Toal, P., & Gutman, A. (2021). Pain and Function in Chronic Musculoskeletal Pain-Treating the Whole Person. J Multidiscip Healthc, 14, 335-347. https://doi.org/10.2147/JMDH.S288401

Rehab Fails: What goes wrong in pain rehabilitation 3

I’m beginning to think this series could grow into a monster – so many #rehabfails to pick from!

Today’s post is about rehabilitation that doesn’t fit into the person’s life. Or that the person hasn’t been supported to fit the rehabilitation into their life. THEIR life, not ours!

You know what I mean: for six to twelve weeks, this person has been coming along to their treatment sessions, doing the things the therapist suggests. They make progress and it’s time to end the programme. “Good bye patient” the therapist says. And the patient skips off into the sunset, fixed for life.

Yeah right.

Roll that movie right back to the start.

At the first consultation, therapists often ask the person about what they’d like to achieve. Often the person doesn’t really know, after all most people don’t routinely set goals – and particularly if someone is experiencing the disruption of dealing with a painful problem that doesn’t go away like it should. It’s not for nothing that people describe this time as being in “zombie land” and dealing only with “the essentials” (Lennox Thompson, et al, 2019). Nevertheless, therapists ask and people are expected to come up with something that can then form the focus of subsequent therapy. A recent systematic review, however, found that many studies describing goal setting practices fail to implement all the components of effective goal setting – in particular, omitting “formulation of coping plan” and “follow up” (Kang, et al, 2022).

Now these two components are crucial for long-term adherence to rehabilitation, and especially in persisting pain where it’s probable the person will need to follow therapeutic practices for a very long time. The “coping plan” consists of identifying barriers and facilitators to doing the actions that lead to achieving goals, and also involves assessing confidence to do so, along with generating a plan to deal with unexpected situations. “Follow up” involves self-evaluating progress, evaluation, and adjusting the plan to suit. (Kang et al., 2022).

Why are these two components so important?

Well, think of one of your recent patients. Think about the things you (and others in your clinical team) asked that person to do. Are any of these things typical for this person? Are they habits, built into daily routines? Are they familiar? What is this person’s daily routine like? What does their family need to do and what does this person need to do for them? If the person usually works, and is still trying to maintain that on top of their usual home and family activities, how much are you and your colleagues asking the person to do on top of these? When they’re already struggling with the debilitating effects of their pain problem?

See why we might have trouble with adherence? Let alone ensuring that the person feels it’s worthwhile doing what it is we’re asking them to do!

I’ve seen this problem time and time again. Little, if any, consideration of this person’s usual daily life context. Little thought to the burden of trying to manage normal life and what the therapists is asking the person to do. No discussion about what might get in the way of fitting these therapy things into their life – and then I’ve heard clinicians have the audacity to suggest the person isn’t motivated!

So much for person centred rehabilitation. So much for helping the person work out how they might fit these things in, and how they might develop a routine or habit that they can continue once they leave the therapist’s care.

While I’ve looked at goal setting and therapy for persistent pain, what I notice is that even in acute musculoskeletal management, studies have shown that therapists don’t really understand goal setting. Alexanders and colleagues (2021) found that physiotherapists undertaking goal setting for anterior cruciate ligament rehabilitation might employ SMART goals – but didn’t understand the theory behind goal setting, didn’t know that expectations were important, and didn’t use feedback sufficiently. And this is for SMART goals that have already been found wanting (see Swann et al., 2022).

What do I suggest?

Start by understanding the person’s current responsibilities in life, and the impact their pain problem is having. Recognise that those impacts will also have an impact on their capability for adding to their daily routine.
With the person, establish the best time of day for them to do whatever it is you think they should do. Work through what might get in the way – and what might support them.
You may need to help them develop some additional skills to deal with what might get in the way of undertaking your activities – maybe skills to communicate with family, or the boss, so they can take 10 minutes out to do the breathing practice you’ve suggested, maybe some work with thoughts to help them be OK with guilt for “not doing things as normal.”
Assess their confidence to engage in this additional task. Use motivational interviewing to boost their confidence (and it probably would help you to consider the importance of what you’re asking them to do in the context of their values and activities).
Check how much you’re asking the person to do – is it achievable in this person’s life? A certain intensity might be theoretically important for physiology, but if the person doesn’t do it because he or she can’t fit it in, it just won’t get done.
Check in with the person in between appointments. If you see them once a week – send a text 3 days in to that week to see how they’re getting on. Or ask the person if they’ll send you a text to let you know. Give feedback, alter your plan, encourage, celebrate.
And once the person is nearly ready for discharge, make sure you have a set-back or relapse prevention plan in place. What should this person do if things begin to go pear-shaped? Do they need to keep going at the same intensity as they have during your therapy? What are their warning signs for things beginning to fall apart? (clue: it’s often not when people are beginning to hurt again, it’s often because the person is feeling good and starts to drop the things that have helped!)

Don’t do #rehabfails

Kang, E., Kim, M. Y., Lipsey, K. L., & Foster, E. R. (2022). Person-Centered Goal Setting: A Systematic Review of Intervention Components and Level of Active Engagement in Rehabilitation Goal-Setting Interventions. Archives of Physical Medicine and Rehabiltation, 103(1), 121-130 e123. https://doi.org/10.1016/j.apmr.2021.06.025

Lennox Thompson, B., Gage, J., & Kirk, R. (2019). Living well with chronic pain: a classical grounded theory. Disability and Rehabilitation, 1-12. https://doi.org/10.1080/09638288.2018.1517195

Lenzen SA, Daniels R, van Bokhoven MA, van der Weijden T, Beurskens A. (2017). Disentangling self-management goal setting and action planning: a scoping review. PloS One,12:e0188822.

Swann, C., Jackman, P. C., Lawrence, A., Hawkins, R. M., Goddard, S. G., Williamson, O., Schweickle, M. J., Vella, S. A., Rosenbaum, S., & Ekkekakis, P. (2022, Jan 31). The (over)use of SMART goals for physical activity promotion: A narrative review and critique. Health Psychology Review, 1-16. https://doi.org/10.1080/17437199.2021.2023608

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For health professionals supporting chronic pain self management