Self-management: What do we think about it?


Self-management is all about the person living with their chronic health problem, learning how to maximise their wellbeing and limit the impact of their health problem on their life. The words might be well-known – but how self-management is best carried out, by whom, and when is a vexed question.

I stumbled upon a study carried out by Van Wely, Boiten, Verhoef, Eijckelhof, Van Hooft, Van Staa et al (2019) where, using Q-methodology (more about this shortly), they examined the beliefs about self-management of a group of Dutch physiotherapists.

First of all, why is this something to blog about on a blog about pain? My basic reason is that the only time we as health professionals can directly influence what a person does is when they’re in front of us. That might be about 30 – 60 minutes, maybe once a week if we’re lucky. The rest of the time that person is on their own. How closely the person follows what we’ve discussed in clinic depends on a whole bunch of factors, some of which are values (how important is health compared with everything else in that person’s life?), readiness to take action (maybe just thinking about it hasn’t yet moved to planning or doing), support or not from others, how well we’ve explained things (how many of us learned about teaching as part of our training?), confidence (are they worried they’re doing it wrong?) and so on. We’re a little inclined to believe that because we value health over other parts of life, so too does the person. And we’re familiar with what to do – but what we ask people to do can be very foreign and unfamiliar.

Living with persistent pain is a 24/7 7 days a week job. It doesn’t go on holiday, doesn’t switch off because you’re tired, doesn’t shuffle into the background because you have other things to do. I’ve referred to it as the ongoing burden of micro-decisions made every single moment of the day.

This means that knowing what helps, and what doesn’t, being able to decide what to prioritise in this moment on this day in this place, being able to communicate plans and negotiate with others, being “selfish” enough to prioritise what helps with wellbeing over what might feel important in the moment but drains.

So, turning to the study by Van Wely and colleagues, what did they find out?

Q-methodology is an approach to help establish correlations between participants’ beliefs and values by ranking a series of statements, and gradually reducing the list to one by forcing decisions about which statements to omit. Often there is an interview accompanying a Q-methodology sort, and in this case it was used to help participants explain their choices. 37 statements about self-management were sorted by participants into (1) agree (2) disagree or (3) neutral. The “agree” statements were then rank ordered starting from the right “strongly agree”, then moving to the left “strongly disagree” and finally, the neutral statements were sorted. For more information on q-methodology, this site is gold!

Statistical analysis was carried out using a by-person centroid factor analysis with varimax rotation. This process was used to identify the number of data-driven factors, factors representing people who sort the statements in a similar way to one another (ie they share similar beliefs). The qualitative material was then coded to identify topics related to self-management support, and clustered into themes which the authors then labelled.

39 physiotherapists were involved in this study, approximately 50% women, aged between 22 – 64 with an average age of 41 years. Most participants held a Bachelor degree, and the majority worked either in priamry care or nursing home settings.

Results – and what do they mean?

Three dimensions explained how the therapists ranked the statements – the physio’s role perception, the physio’s drive, and collaboration with the patient. The authors therefore coded the four perspectives (from the factor analysis) as (1) externally driven educator (2) internally driven educator (3) client centred coach and (4) client initiated coach.

(1) Externally driven educators thought self-management “ought” to be done to cut down health-care costs, or to reduce the need for clinical input. They thought of themselves as motivators and experts, and didn’t allow much autonomy for the person. Adhering to what is “prescribed” was important – while life goals were considered important, these physio’s thought treatment goals were more important.

(2) Internally driven educators thought self-management is best encouraged by identifying intrinsic motivation in the person, and support self-management by education within consultations. Unlike externally driven educators, they weren’t as motivated by healthcare system issues, and thought that self-management should be supported as an integral part of every session. These participants recognised the person’s autonomy and own expertise to find solutions, and also identified the need for them to obtain additional training to be able to provide support in this way.

(3) Client-centred coaches were influenced by their own internal drive for self-management support and focused on the person’s freedom to choose. Goals of reducing professional care and cost weren’t considered part of the equation, and they aimed to collaborate in a partnership with the people they were seeing. They believed in shared-goal setting, and thought they should be available when needed, but encouraged people to find solutions for their own problems. They particularly thought that healthcare reorganisation was needed to support this approach to healthcare.

(4) Client-initiated coaches also had an internal drive to support self-management but believed the person should ‘take the initiative’ to ask for help, and essentially passed the responsibility for maintaining self-management over to the person, rather than integrating either the environment or physiotherapy input. This group of participants thought distance technology would be useful to support people at a distance.

Overall, the physios in this study thought self-management was not a new concept, nor as something that was difficult or time-consuming. They recognised that self-management promotes the person’s freedom to choose – and that treatment should address the person’s needs so they could self-manage.

The authors were pleased that participants in this study thought of self-management as “business as usual”.

I thought it was interesting that the “educator” perspective was a strong theme. This tends to elevate the clinician above the person seeking help – although these participants did aim for shared decision-making mainly via providing education. I also thought it interesting that factors such as the need for healthcare reform and financial impact of self-management (to reduce cost) were important and I wonder what this study would look like in New Zealand where private practice physiotherapy, dependent as it is on (usually) ACC funding, might be less inclined to support an autonomous self-managing patient.

I think self-management is something all people with persistent pain engage in, whether it’s supported by clinicians or not. We don’t spend all our time “in therapy” which means the rest of our time is all about those decisions. Supporting people to be able to make thoughtful choices about what and how and when to do things that help promote well-being is, I think, something health professionals must do as equal partners. And I think it needs to be made explicit and part of every consultation. That means learning how to work alongside people, listen carefully to their priorities and values, help them develop skills to problem solve and find their own solutions – but most importantly, to have the confidence that people living with pain can make choices themselves.

Van Wely, L., Boiten, J. C., Verhoef, J., Eijckelhof, B. H. W., Van Hooft, S. M., Van Staa, A., & Roelofs, P. D. D. M. (2019). Perspectives of Dutch Physiotherapists on Self-Management Support: A Q-Methodology Study. Physiotherapy Theory and Practice, 35(4), 318-326. doi:10.1080/09593985.2018.1443182

Clinical reasoning & meaning-making (a long post)


Clinical reasoning is a cornerstone of evidence-based healthcare, in fact some would argue it’s the cornerstone of all healthcare. While there are many different processes, the ultimate purpose of clinical reasoning is to ensure the person seeking help has their needs identified then met, and the clinician has a basis upon which to decide which treatment they should offer.

The approach we use in clinical reasoning, including the information we prioritise and search for, and the way we synthesise the information to make sense of it will depend on the model we have to explain our treatment approach. For example, if we’re occupational therapists, we’re looking for information about the occupations the person wants and needs to do (identifying the person’s needs), and we search for information to help explain how and why this person is unable to manage their occupations at this time. Because occupational therapy is concerned with context – social, interpersonal and environmental, as well as looking at pathophysiological processes, we will also review psychosocial-spiritual factors (beliefs, attitudes, desires, interactions, values, etc) and the physical and social environment/s as part of our clinical reasoning.

Meaning making

But… there’s something missing from this picture of how we go about doing clinical reasoning: the very process of enquiring about “daily doing” (aka occupation) is likely to influence the person seeking help. There is a dynamic process involved in making sense of what’s going on between the clinician and the person. Some would call this “intersubjectivity” (Quintner & Cohen, 2016) meaning “a shared perception of reality between embodied agents… meanings expressed through performance and …perceived by others”, some would call it “embodiment” (Arntzen, 2018) meaning bodily aspects of human subjectivity and referring to my phenomenological body (the way I experience my body), and still others wouldn’t recognise it at all! I like to call it “meaning making” or the way that both parties make sense of what goes on in the “meet the therapist moment” as Benedetti (2011) puts it.

Much of the discussion about clinical reasoning refers to the way clinicians blend implicit/tacit knowledge (knowledge that’s so well-learned that it’s hard to state exactly what it is) with explicit/declarative knowledge (knowledge that we can articulate). Each profession has its own implicit body of knowledge that frames the way they approach the clinical problem. I think patients, or people seeking health care, also have implicit knowledge they bring to the clinical setting.

Some of the knowledge brought in from people seeking treatment is the inner sense that “something is wrong with me”. Without the sense that something is wrong, we don’t seek healthcare, and this can explain why problems like bowel cancer can go unnoticed until the disease is in an advanced state – because symptoms are either very subtle, or not present. With low back pain we know that for most people the sense that “something is wrong” is almost immediate, but may not evolve into treatment-seeking until the problem either doesn’t follow the typical path of recovery, or the pain begins to interfere with what’s important in daily life (Ferreira, Machado, Latimer, Maher, Ferreira, & Smeets, 2010).

We acquire the idea of “something is wrong with me” from personal experience (that queasy feeling just before you get seasick), from others around us (you’re looking really pale today, are you OK?), and from broader society (if your pain persists, see your health professional). But, from some of the qualitative studies I’ve been reading, I think we really start to notice and do something about our “something is wrong with me” intuition once we can’t do things that are important to us and help to define our sense of self (Darlow, Brown, Lennox Thompson, Hudson, Grainger, McKinlay & Abbott, 2018).

It’s clear to me that both the person seeking help and the clinician hold tacit knowledge, and that this knowledge/information is likely to influence clinical reasoning. And some of the implicit knowledge in both clinician and patient changes without either party recognising that’s what has happened.

Back to clinical reasoning and meaning making.

Something I noticed when developing my theory of living well with chronic pain was that many people with ongoing pain learn about the effects on daily doing by themselves (Lennox Thompson, Gage & Kirk, 2019). What I mean by this is they establish what they can and can’t do in mini-experiments (experiences) each day. This experimentation and experience is strongly influenced by the person’s interpretation of what the pain means – and the confidence they have to find ways to cope or deal with pain. Because so much of our knowledge about pain is based on acute pain that generally settles down quickly, it’s unsurprising that some interpretations of persistent pain go awry.

Given the impact of persistent pain is firstly on being able to do what’s important in a person’s life, it makes sense to me that our clinical reasoning should incorporate an understanding of what the person needs and wants to do. It also makes sense to me that we need to understand the person’s current perspective: their beliefs, assumptions and experience of what pain has interfered with. This doesn’t mean that the person’s perspective is 100% accurate with respect to what is going on in their body, because as I pointed out above, many of our beliefs about “what is wrong with me” are based on social constructs. Having said that, it doesn’t mean our clinical interpretation is any more “accurate” – it does, however, mean that until our perspectives align, we’re likely to have trouble developing a shared meaning of the problem. As Arntzen points out “there is a tendency in person-centered occupational therapy practice to consider only the patient-articulated experience and not the multiple layers of embodiment and co-construction of meaning within the therapeutic relationship” (Arntzen, 2018).

One form of clinical assessment, perhaps one that’s under-used, is as Arntzen (2018) describes, the ongoing dialogue between a clinician and the person as the person enacts movements or engages in occupations. This kind of meaning making involves physical and cultural contexts (I may visit a cafe with my client to see how she navigates the tables and people, how she stands and then sits while drinking her coffee, and how she moves from this location to her car); it involves conversations with her about what is going through her mind as she encounters these situations; I may change the location of our next session on the basis of interpreting her performance in this context, adapting my voice, my body language to convey my assessment of this performance.

At the same time, the person I’m working with is also making meaning of how she managed in this situation. From my nonverbal and verbal response to what she does, she may infer that I think she’s doing fine, or that I’m worried about her capabilities. You’ll notice that much of this implicit shared meaning making is not verbal – it’s inference, and may well be inaccurate.

I really like Arntzen’s description of the way clinician and person can work together to develop a shared understanding of “the problems” – I’m quoting it whole:

An embodied intersubjective reasoning can be about questioning how the patient senses their changed body during performance and what it means for his or her ability or obstacles to act, learn, and change. This mode of reasoning can help the occupational therapist problematizing the patients’ performance, capabilities, and possibilities as an interrelated process between action failure, lived habitual practice, and ongoing and shared meaning-making.

Arntzen, 2018

I also love this depiction of therapy: Therapy is a context- specific dialogue between two interpretive, embodied agents, in which the outcomes of their relationship are not given in advance (Arntzen, 2018).

How can all clinicians use this perspective?

While Arntzen is an occupational therapy commentator, and I have framed this post through an occupational therapy lens, I think there is much that other movement and doing-oriented clinicians can draw on. The “ambiguous body” is also core to much of physiotherapy: the person’s experience of being within a body with its attendant limitations, and the body through which goals and aims and life is lived. The ambiguity is particularly relevant in pain where “not being myself” dominates the person’s sense of self – because the experience of pain and movement renders familiar actions as different and needing more attention than usual, or failing where it hadn’t before. Doing is disrupted, and therefore “being” the person I know myself to be is also disrupted. The way the person experiences his body can be influenced by an empathic clinician, to help him recognise changes, or become aware of a return to familiarity.

Arntzen (2018) also refers to tools or the things we use during daily doing – the toothbrush, the car, the clothing we wear, the phone we use that now doubles as computer, camera, aide memoir. Although we can think of these things as “things” have you noticed that you talk about “my phone”, “my car” – and the choice of phone or car situates you in your social environment. If you’ve ever picked up another person’s phone by accident, it just doesn’t feel right even before you recognise that it’s not your own! Occupational therapists incorporate “things” as part of enabling occupation, as do physiotherapists who may incorporate walking aids, temporary splints, or use gym equipment as part of therapy. I think it’s worth considering how the person experiences these things – are they integrated into a sense of self? (think of those tatty neoprene wrist splints worn for months, if not years; and also ponder the gym equipment that still seems alien even after completing a six week rehabilitation programme).

Finally, the crucial element of what we attend to during therapy – and the things we focus on and draw the person to notice – is about our own embodied presence. Arntzen says “Through moment-to-moment interaction, the therapist can have an effect on what becomes foreground and what is background for the patient during the act. The therapist may support or hinder the patient’s habitual practice, or may facilitate or hold back the patient’s own capability to explore new strategies, develop compensatory techniques, and find alternative solutions” (Arntzen, 2008). I’ve often described this process when teaching about eliciting automatic thoughts during movements (eg riding a bike or walking over a slippery floor) – if we attend to “purity of movement” or biomechanics or some externalised idea of how someone ought to do something, we’re likely to elicit more of that and it may be unhelpful. If we collaborate with the person and interconnect we’re just as likely to learn from him as he is from us. I like Schell’s (2014) description of this form of clinical reasoning: ecological professional reasoning.

Concluding

To conclude this lengthy post, I think too often clinicians have viewed their role as dominant, and what they say or ask the person to do as the primary therapeutic agent. I also think there’s a reason someone seeks help from a clinician. Relying only on one form of knowledge without integrating other forms (from the other person, using only language, being primary active agent etc) doesn’t seem to represent what actually goes on in therapy.

Many people with persistent pain learn what they can and can’t do on the basis of experiments that (often, at least in our most disabled people) lead to failure and recognising “I can’t do that any more”. Our approach has been to administer corrective exercises, experiences in moving differently, but we may well have forgotten both the contextual nature of doing and the experiential interpretation made by the embodied person. If we want to help people return to “feeling like themselves” maybe we need attend more carefully to the “what it is like” to experience this new experience, and then support the person to experiment in their own context. I’d call this knowledge translation, or perhaps occupational therapy.

Arntzen, C. (2018). An embodied and intersubjective practice of occupational therapy. OTJR Occupation, Participation and Health, 38(3), 173–180. https://doi.org/10.1177/1539449217727470

Benedetti, F., & Amanzio, M. (2011). The placebo response: How words and rituals change the patient’s brain. Patient Education and Counseling, 84(3), 413-419. doi:http://dx.doi.org/10.1016/j.pec.2011.04.034

Brooks, R., & Parkinson, S. (2018). Occupational formulation: A three-part structure. British Journal of Occupational Therapy, 81(3), 177–179. https://doi.org/10.1177/0308022617745015

Darlow, B., Brown, M., Thompson, B., Hudson, B., Grainger, R., McKinlay, E., & Abbott, J. H. (2018). Living with osteoarthritis is a balancing act: an exploration of patients’ beliefs about knee pain. BMC Rheumatology, 2(1), 15.

Ferreira, M. L., Machado, G., Latimer, J., Maher, C., Ferreira, P. H., & Smeets, R. J. (2010). Factors defining care-seeking in low back pain–A meta-analysis of population based surveys. European Journal of Pain, 14(7), e1-e7. doi:http://dx.doi.org/10.1016/j.ejpain.2009.11.005

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

McCambridge, J., Witton, J., & Elbourne, D. R. (2014). Systematic review of the Hawthorne effect: new concepts are needed to study research participation effects. Journal of Clinical Epidemiology, 67(3), 267–277. https://doi.org/10.1016/j.jclinepi.2013.08.015

Quintner, J., & Cohen, M. (2016). The challenge of validating the experience of chronic pain: the importance of intersubjectivity and reframing. In Meanings of Pain (pp. 281-293). Springer, Cham.

An experimental study of pharmaceutical cannabis in fibromyalgia


I’ve had a strong interest in cannabis and pain seeing as so many of the people I’ve worked with who live with chronic pain talk about using it (it’s still illegal in New Zealand, though medical cannabis has just been legalised this year). This study is one of the growing number of studies beginning to examine the effects of cannabinoids on pain, and offers a tiny window into what might be happening. Note: the study was performed in collaboration with the cannabis producer, and one of the authors is an employee of this company. Although his role was only to comment on the protocol and final version of the paper, it’s worth noting this relationship.

The study question

In this study, the researchers were looking to understand the analgesic effect of inhaled pharmaceutical-grade cannabis as a plant rather than an extract, using four different varieties with known levels of THC and CBD. Three had active biochemicals, while one was a placebo and had neither THC nor CBD. They investigated the effects of these preparations on experimental pressure pain, electrical pain, and spontaneous pain (primary endpoints), as well as the subjective and psychotropic effects.

The participants were all women with rheumatologist-diagnosed fibromyalgia, a score on a numeric rating scale of more than 5 (where 10 = most pain imaginable), met the diagnostic criteria of the 2010 American College of Rheumatology, and therefore had a widespread pain index of greater than or equal to 7 (from 0 – 19); symptom severity score of greater than 5 (from 0 – 12), or a widespread pain index of 3 – 6, and a symptom severity score greater than 9. Participants were excluded if they had any medical, neurological or psychiatric illness, used strong opioids or other pain relief except paracetamol or ibuprofen, using benzodiazepines, or had any known allergies to the cannabis used. Other exclusion criterai included pregnancy, illicit drug or alcohol use, recent use of cannabis, breast feeding, and other pain problems apart from fibromyalgia. On the day of screening and each day of testing, urine was tested for illicit drug use. Comment: note that excluding anyone with psychiatric illness doesn’t describe whether this was current illness, illness controlled by medications – and if it doesn’t include these participants, suggests the participants are not our usual sort of person with fibromyalgia, given the high comorbidity of psychiatric illness with fibromyalgia.

Study design

Participants attended the centre five times, with the first visit being the screening session where they were also given an orientation to the experimental set-up (eg how to inhale). On subsequent visits, participants were given one of four different cannabis inhalations (in random order) with at least 2 weeks between visits. The vapour was generated using the Stroz and Brickel Volcanic Medic vapouriser which heats the plant material which is then collected in a balloon (made opaque for this study so participants couldn’t see the vapour). Participants had to inhale the vapour 3 – 7 minutes after the balloon was filled, and asked to hold their breath for 5 seconds after they’d inhaled.

Blood testing involved using an arterial line, and five ml of blood was obtained a T0 (before), 5, 10, 20, 30 , 40, 50, 60, 90, 120, and 180 minutes after the person started to inhale. This blood was analysed for CBD,THC, and its active metabolite 11‐hydroxy‐THC (11-OH-THC) plasma concentrations.

In addition, participants were asked to rate their pain on an 11 point visual analogue scale (from 0 = no pain to 10 = most severe pain imaginable), and to do this before inhaling, and at 1, 2, and 3 hours after. Two experimental pain tests were used: pressure pain test using an algometer to deliver pressure on a skin area of 1 cm square, between the thumb and index finger; pressure was applied until the person said it had become painful, and repeated three times at each time point of T 5 0 (baseline), 12, 22, 32, 42, 62, 92, 122, 152, and 182 minutes after the start of inhalation.

An electrical pain test was also used delivering a current via two electrodes placed on the tibial surface of the right leg, about 10 cm above the medial malleolus. The participants were required to indicate when they first experienced pain (threshold) and when the pain became unbearable (tolerance), and this procedure was repeated at T 5 0, 10, 20, 30, 40, 60, 90, 120, 150, and 180 minutes after the start of cannabis inhalation.

Finally, two questionnaires were also completed: the Bowdle questionnaire which is used to evaluate psychoactive aspects of cannabis use (eg psychedelic effects), and the Bond and Lader questionnaire which is used to establish the mental cloudiness and mood effects.

I won’t go into the blinding and allocation processes, but randomisation was computer-generated, and adequate steps were taken to ensure neither the investigators nor the participants were aware of the contents of the inhalation.

The results

25 people were recruited, but five withdrew after the first study visits, and interestingly three did so because of dizziness and nausea (3/5) . These participants were replaced with another patient according to the protocol. Participanats were women, around 39 years old (+/- 13 years), weighing about 82kg +/- 20kg, and 169 cm (+/- 7cm). Their NRS pain score was 7.20 +/-1.24; and all had their fibromyalgia diagnosis confirmed. Widespread body pain of 13.9 =?-2.6, symptom scale of 9.2 +/-1.3, and 14.9 +/- 2.9 tender points. (note that tender points are still difficult to identify reliably, so this continues to be an area of discussion).

All three active preparations resulted in adverse effects. Yes – all three! These effects included coughing, sore throat and bad taste, feeling high, dizzy, and nauseous. Of course, two also reported feeling high after placebo, but there were no differences in the frequency of adverse effects between the active treatments, and it should be noted, no serious adverse effects.

Interestingly, none of the treatments had an effect greater than placebo on spontaneous pain scores or electrical pain responses. So it doesn’t look like cannabis is much help with the general spontaneous pain many people with fibromyalgia experience, and I hope we don’t go around electric shocking each other!!

BUT two preparations caused a significant increase in tolerance to the pressure applied to the skin over the adductor pollicis muscle for the duration of the study. The largest effect was observed for the cannabis variety that contained high doses of both THC and CBD, allowing an additional 11kgf at 20 – 90 minutes. Active treatments vs placebo showed significantly more patients (n = 18) responded to the CBD + THC preparation with a decrease in spontaneous pain by 30%, but only N = 9 achieved 50% which is not statistically significant. At both responder rates, all other treatments had response profiles not different from placebo. Spontaneous pain scores were strongly correlated with the magnitude of drug high.

Study author’s discussion

The authors point out that none of the treatment had an effect greater than placebo on spontaneous pain, but that compared with placebo, more people responded to the combined THC + CBD preparation than the other forms – and these others had response rates no different from placebo. The pain reduction scores for spontaneous pain correlated with how high participants felt. For pressure pain threshold, an increase in pressure was tolerated by people with two preparations with THC content, while the form with CBD did not have any analgesic effect.

What do I think?

As someone living with fibromyalgia, I’m always curious about treatments that may help reduce the burden of this disorder. Unfortunately, I don’t think cannabis, at least in these forms, is going to cut the mustard. While pressure pain threshold reduced, it didn’t reach the 50% reduction in pain that we really want, and I’m not sure pressure pain is the one I’m most concerned about. I’d love for my spontaneous pain to reduce and unfortunately this study suggested that I’d have to get high to do so. Might be great for pain, but not so great for being able to DO anything! The authors point out that “the pressure pain test seems especially suited for exploring treatment effects in FM pain, as it elicits mechanical muscle stimulation through A delta- and C fibre activation and better reflects the symptoms of patients with FM, but I’m not entirely convinced myself.

The numbers needed to treat for cannabis preparations are greater than 20 – what this means is that more than 20 people need to try cannabis for ONE person to obtain a benefit. Not only that, but from this study, 5 of the original 20 people withdrew because of adverse effects, with adverse effects being very common. You’d have to be prepared to cope with coughing, dizziness, nausea, and feeling high if you wanted to use cannabis in this way.

So, at this point I’m not an advocate of cannabis for the purpose of relieving the pain that people with fibromyalgia experience. While it’s appealing, the numbers needed to treat are very high, adverse effects common, and the fact that the analgesic effects were only experienced alongside feeling high makes me very cautious. More studies are needed!



van de Donk, T., Niesters, M., Kowal, M. A., Olofsen, E., Dahan, A., & van Velzen, M. (2019). An experimental randomized study on the analgesic effects of pharmaceutical-grade cannabis in chronic pain patients with fibromyalgia. Pain, 160(4), 860-869.

Pacing, pacing, pacing…


If there’s one pain management and rehabilitation strategy that keeps me awake at night, it’s pacing. Living with persistent pain, I loathe the idea of pacing because I know everyone “booms and busts” from time to time, and few people like the idea of planning every single aspect of every single day as they come to grips with modifying their daily routines. BUT it’s one of the most popular strategies in textbooks, self-help books, and in treatment so there must be something in it, right?

Vexed definitions

One of the problems with the whole pacing concept is defining what we mean by it. I like Nicole Andrew’s approach: Nicole acknowledges that defining pacing is difficult, so when she talks about her research into pacing, she’s clear about the definition she’s using in that piece of work.

Various definitions abound. As a broad concept, pacing refers to organising daily activities in such a way that a specific end is achieved. The difficulty arises when we begin to determine the end goal of pacing (pain reduction? maintaining consistent activity levels? completing important tasks? avoiding a flare-up? reducing the relationship between pain fluctuations and activity? increasing overall activity levels over time?) and the means used to achieve these ends (time as a guide? activity intensity as a guide? importance and values as a guide? “spoons” of energy as a guide?). You can see how complex this concept is…

Nielson, Jensen, Karsdorp & Vlaeyen (2013) discussed this and identified two treatment goals (they weren’t considering the spontaneous use of pacing, nor the use of pacing outside a treatment context). “Whereas the operant approach seeks to improve function (decrease disability), the energy conservation approach is designed to reduce symptoms (pain, fatigue).”

Fordyce developed the operant conditioning approach, viewing pain behaviours as reinforced by other people – or by avoiding negative consequences such as a pain flare-up. His approach involved establishing a quota – a certain number, or a certain time in which people maintain activity irrespective of pain flucuations. In a clinical setting, this is the approach I mainly use, though there is an art to setting the “minimum” a person does (setting a baseline) and to nudging the activity levels up.

Sternbach, another influential pain management person from around the late 1970’s, followed a similar approach – but instead of simply establishing a baseline, he advised people to anticipate the point at which they would increase their pain and to stop the activity just before then. This is also a popular approach in pain management rehabilitation today – but has the unfortunate effect of reinforcing a pain avoidance (and pain contingent) approach, if not done very carefully.

Occupational therapists have frequently advocated the “5 p’s”. Pacing, positioning, posture, persistence and problem-solving. This approach was based on energy conservation, and while I can’t find the original papers from which this approach was developed, it was introduced to me as part of rheumatology practice, and in conditions where fatigue is a problem such as multiple sclerosis. I can see it being used today as part of the popular “spoons” meme where people are thought to have a fixed number of “spoons” of energy, and need to allocate their energy accordingly. My main criticism of this approach is that it doesn’t allow for people to increase their capabilities over time, either through “training” effects, or habituation.

Now, how about some evidence for any of these approaches?

Well therein lies a problem – there is very little research to support activity pacing despite its popularity. This is why I was so interested when I spotted a pilot study published in Journal of Pain, testing the energy conservation approach to activity managing (aka pacing) against an operant conditioning approach in a group of people with fibromyalgia. This group of people provides us with a useful population to test both approaches because fatigue is thought to be a prominent feature of fibromyalgia, and energy conservation has some degree of face validity for managing fatigue.

The design of the study involved four groups, two immediately treated using either an operant conditioning variant of pacing, or the energy conservation variant, and two groups with delayed treatments, again with the two versions (these groups acted as the control groups for this study). 178 participants were involved, with confirmed diagnoses of fibromyalgia given by occupational therapists using the American College of Rheumatology’s 2010 FMS diagnostic criteria. If the occupational therapist had doubts about the individual’s diagnosis, or the person wasn’t able to provide formal documentation confirming the diagnosis, the study rheumatologist assessed the potential participant for inclusion. This is an important procedure in studies of people living with fibromyalgia, given there is no definitive diagnostic test such as a blood test or imaging result.

The two treatment approaches were documented in treatment manuals to establish consistency, and it’s interesting to note that the approaches were applied across all activities in a day rather than just exercise, as often happens. For full descriptions of each of the ten treatment sessions, the article should be referred to, and the treatment manuals are available at http://research.melanieracine.com/activity management

Cutting to the chase, what did they find?

Well… to quote the authors “Inconsistent with the study’s primary hypothesis, neither treatment was effective in reducing average pain or usual fatigue symptoms. However, analyses of secondary outcome measures suggest the possibility that OL-based activity pacing treatments might be more effective than EC-based treatments in improving patient function.”

I didn’t expect pain reduction, or fatigue to be altered by an activity management approach: the relationship between movement and pain is highly variable, and there are many times we’ll be happy doing something and not experience pain simply because it’s something we enjoy. At the same time, I did hope to see a difference between the two approaches in terms of overall “doing” (function). My expectation was that pain may actually increase as people begin doing more, or alternatively, that people will feel more confident that they can achieve what’s important to them in a day, and that pain intensity becomes less of a guiding factor. The authors provide some explanations: perhaps the study numbers were too low to detect a difference (ie the study was under-powered); and perhaps a brief intervention isn’t intensive enough to help change over so many different aspects of a person’s life. Or perhaps, I want to add, neither approach is terribly great and while they both have intuitive appeal, persistent pain is too complex for any single activity management approach to make much of a difference. Maybe it’s something that needs other strategies to be incorporated such as exercise, mindfulness, medications, and even scheduling pleasant events.

So where does this leave us?

I guess for me, I like to think of activity pacing as one of many different tools in my toolbox. I bring it out when I’m attempting to increase my overall activity level – such as my walking programme, where I’m slowly but gradually increasing my capabilities without giving myself a whole two weeks of DOMs! I otherwise use a more flexible activity management approach: if something is important to me, and I think I can deal with the flare-up, I’ll do it. If it’s not as important to me, or I don’t think I can deal with the flare-up, I’ll probably modify my approach. Pacing, or activity management is only one tool…

Andrews, N. E., Strong, J., & Meredith, P. J. (2012). Activity Pacing, Avoidance, Endurance, and Associations With Patient Functioning in Chronic Pain: A Systematic Review and Meta-Analysis. Archives of Physical Medicine and Rehabilitation, 93(11), 2109-2121.e2107.

Nielson, W. R., Jensen, M. P., Karsdorp, P. A., & Vlaeyen, J. W. S. (2013). Activity Pacing in Chronic Pain: Concepts, Evidence, and Future Directions. Clinical Journal of Pain, 29(5), 461-468.

Racine, M., Jensen, M. P., Harth, M., Morley-Forster, P., & Nielson, W. R. (2019). Operant Learning Versus Energy Conservation Activity Pacing Treatments in a Sample of Patients With Fibromyalgia Syndrome: A Pilot Randomized Controlled Trial. Journal of Pain, 20(4), 420–439. https://doi.org/10.1016/j.jpain.2018.09.013

Do you trust me?


Trust – something that needs to be earned, or something that is present at first… and then erodes? Or perhaps, it’s a snap judgement we make on the fly – and judge everything else about a person on that basis?

Firstly, why even discuss trustworthiness in pain rehabilitation? Well, the answer is quite clear: I don’t know how many times I’ve been asked if I can tell whether someone is faking their pain. I’ve read numerous articles on functional capacity testing – and its poor predictive validity (or completely absent investigation of such properties). I’ve had case managers tell me they have a method for testing whether someone is faking or malingering… so trustworthiness is something those in the insurance industry seem to want to test. The same kinds of questions are made by employers: how can I tell whether this person is really that bad?

When we don’t believe someone, or we think they’re exaggerating, our level of empathy for that person drops, and our tendency to question their honesty increases (Ashton-James & Nicholas, 2016; Schafer, Prkachin, Kaseweter & Williams, 2016). As a result, people who don’t fit our preconceived ideas of who should or shouldn’t deserve empathy are stigmatised (De Ruddere & Craig, 2016; Stensland & Sanders, 2018). Stigma means people may not receive adequate analegsia (Wilbers, 2015), they may present as stoic and prefer not to reveal how they are feeling (Cagle & Bunting, 2017), and this in turn may lead to further lack of acceptance of that person’s own experience.

So, how is trustworthiness formed? Swenson, Weinstein, Junghaenel and Richeimer (2019) carried out an online study of pain narratives, ie depictions of pain from the perspectives of people seeking treatment. They had 727 participants in this study, 86% (n=626) individuals with chronic pain, and 14% (n=101) having a ‘medical’ background (we don’t know whether medical = health-training). The narratives were based on actual narratives from people living with pain who had responded to the Institute of Medicine (US) call for descriptions related to obtaining care for pain. They identified three narrative characteristics: apparent pain severity, apparent frustration with care, and apparent wish for more or better pain medication. They hypothesised that those describing high levels of pain, frustration with care or a wish for more or better pain medication would be associated with lower ratings of trustworthiness, while people living with pain would give higher ratings of trustworthiness compared with medical professionals.

Participants were asked to rate each vignette on the following characteristics: depressed mood, histrionicity, stoicism, appreciativeness, hostility, and likability. Participants were also asked to assess trustworthiness using the Physician Trust in the Patient Scale (Moskowitz, Thom, Guzman, Penko, Miaskowski & Kushel, 2011).

The results? “Narratives that were rated as depressed, hostile, or histrionic were rated as significantly less trustworthy by study participants (rs=−0.25, −0.44, and−0.43, Ps < .001, respectively). In contrast, pain narratives that were rated as appreciative, stoic, or likable showed a significant and positive relationship with ratings of trustworthiness (rs=0.48, 0.36, and 0.58, Ps < .001, respectively). The observed relationships between personality and psychological characteristics and trustworthiness were similar between patient peers and clinicians.” In other words, the more distressed the narrative the less trustworthy they were rated. So much for compassion for people who are so very often not able to get answers for their pain!

“Pain narratives that expressed a low or moderate level of pain severity received significantly higher trust ratings compared to those narratives that expressed a high pain severity level (t (1,585.15)=9.97, P < .001). Similarly, pain narratives that did not express frustration with pain care received significantly higher trust ratings compared to those narratives that expressed frustration with pain care (t(1,2894.02)=2.59, P=.009).” So, grateful patients are trustworthy, as are people rating their pain as low or moderate. Finally, “when no frustration with pain care was expressed in the narrative, patient peers and clinicians gave similar ratings of trustworthiness, whereas clinicians gave lower trustworthiness ratings than patient peers when frustration with pain care was expressed in the narrative (F(1,2857.31)=7.16, P=.008).” Clinicians clearly think patients should be grateful and satisfied with their care.

Now, I can hear clinicians reading this saying “Oh but not me!” “I would never…” – yet implicit biases exist in healthcare (FitzGerald & Hurst, 2017). Implicit biases are those we have without being aware of them (Holroyd, Scaife & Stafford, 2017). This makes it really difficult to decide whether we ought to take them into account and attempt to correct them, or whether it is just something to put up with. Philosophers Holroyd, Scaife and Stafford tackle this in their paper Responsibility for implicit bias. They break the question of responsibility down to three: Does the attitude reflect badly (or well) on the agent [person], is there a fault (or credit) that can be attributed? Should the agent [person] be regarded as blameworthy for the fault she has or has demonstrated, should she bear some cost or burden (in the form of sanction or blame) for this? And finally, What forward-looking obligations do individuals have for dealing with the fault or problematic behaviour?

Arguments for and against the first question suggest that because the person isn’t aware of their bias, he or she can’t really be held to account for what they do as a result of this. However, once that bias is drawn to the person’s attention, while he or she might still not be able to alter their tendency towards being biased, there is a responsibility to recognise the unfair situation that has arisen, and do something to correct it. Now, Holroyd, Scaife and Stafford’s paper is complex, lengthy and philosophical (tautology perhaps?!), and I’ve cut to the chase – but here’s the thing: we are aware that the way we perceive a person is judged within the first few seconds of meeting them. We’re also aware that we like people who are more like us than different from us. We think people should be grateful for our help, and that they should present as calm and pleasant when they seek it.

YET – many people who live with persistent pain have spent years trying to find appropriate help for their problem. They’re often frustrated, depressed, angry perhaps, and distressed. If we recognise that the people presenting in this way are often stigmatised and judged by others as less trustworthy, I think we ought to (because we know about it) take special steps to counter our tendency to be biased. Some practical things we could do:

  1. Listen for commonalities between the person and ourselves
  2. Recall people who are exceptions – perhaps those who present as distressed and who pull through and develop confidence in their ability to manage
  3. Listen for the unique features of this person’s narrative. Break the stereotype and look for details that make this person special.
  4. Perhaps take the time to ask yourself: what would I be like if I had lived through this person’s life?
  5. Spend some time with people who are experiencing persistent pain. Listen to their stories. Hear their gripes.
  6. Take your time – hurried interactions tend to elicit greater implicit biases.

As we’re emphasising right now in New Zealand, as a result of the terror attack on 15th March 2019, where 50 people died and many were seriously injury, we are one.



Ashton-James, C. E., & Nicholas, M. K. (2016). Appearance of trustworthiness: an implicit source of bias in judgments of patients’ pain. Pain, 157(8), 1583-1585. doi:http://dx.doi.org/10.1097/j.pain.0000000000000595

Cagle, J., & Bunting, M. (2017). Patient reluctance to discuss pain: understanding stoicism, stigma, and other contributing factors. Journal of social work in end-of-life & palliative care, 13(1), 27-43.

De Ruddere, L., & Craig, K. D. (2016). Understanding stigma and chronic pain: a-state-of-the-art review. Pain, 157(8), 1607-1610.

FitzGerald, C., & Hurst, S. (2017). Implicit bias in healthcare professionals: a systematic review. BMC Medical Ethics, 18(1), 19. doi:10.1186/s12910-017-0179-8

Holroyd, J., Scaife, R., & Stafford, T. (2017). Responsibility for implicit bias. Philosophy Compass, 12(3), e12410. doi:10.1111/phc3.12410

Institute of Medicine (US) Committee on Advancing Pain Research, Care, and Education. Relieving Pain in America, A Blueprint for Transforming Prevention, Care, Education, and Research, Washington (DC): National Academies Press (US), 2011.

D. Moskowitz, D.H. Thom, D. Guzman, J. Penko, C. Miaskowski, M. Kushel, Is primary care providers’ trust in socially marginalized patients affected by race, J. Gen. Intern. Med. 26 (8) (2011 Mar 11) 846–851.]

Schafer, G., Prkachin, K. M., Kaseweter, K. A., & Williams, A. C. d. C. (2016). Health care providers’ judgments in chronic pain: the influence of gender and trustworthiness. Pain, 157(8), 1618-1625.

Stensland, M. L., & Sanders, S. (2018). Not so golden after all: The complexities of chronic low back pain in older adulthood. The Gerontologist, 58(5), 923-931.

Swenson, A. R., Weinstein, F. M., Junghaenel, D. U., & Richeimer, S. H. (2019). Personality and treatment-related correlates of trustworthiness: A web-survey with chronic pain narratives. Journal of Psychosomatic Research, 119, 14-19. doi:https://doi.org/10.1016/j.jpsychores.2019.01.017

Wilbers, L. E. (2015). She has a pain problem, not a pill problem: Chronic pain management, stigma, and the family—An autoethnography. Humanity & Society, 39(1), 86-111.

The next new thing


Each week as I sit to write a blog post, I think about what’s been happening in my world and in the world of pain rehabilitation. It struck me this morning that we’re often a bit like “Ooooh! Shiny!” with new toys and techniques and research to read… yet as so many people point out, the old biopsychosocial (sociopsychobiological) framework doesn’t seem to have seeped down very far, particularly when we look at undergraduate training about pain. It’s like an abstract concept until we meet face-to-face with how poorly our original training sets us up for complexity and messiness.

And clinical work is inherently complex, ambiguous, emergent. We work with incomplete information. We pin our hopes upon asking questions about what we hope the problem is, take histories from people who don’t know what we want to know about, use assessment techniques that are full of measurement error and attempt to derive a pattern amongst the noise so we can give the person a name for what is wrong. And we need this label so we know, the person knows, the funding agency knows – what to do next.

What might our training teach us to do? Under the pressure of cramming an enormous amount of information about normal and abnormal function, our training may teach us to quickly discard uncertainty so we can answer the examiner’s questions promptly. We are possibly led towards a linear, time-constrained interview process where people present as neat problem lists, and where uncomfortable imprecision, particularly with respect to – ewwww! – feelings, thoughts, beliefs, family relationships, mental health, drug and alcohol use, coping strategies – yes all those things inside Pandora’s box – is put aside to focus on the real, physical problem we can do something about.

I think this kind of process sets us up to constantly seek the next new thing. We’d like to know that something will work for people who we know, once we start working in the real world, just don’t conform to our diagnostic boxes. Secretly perhaps we’re hoping there will be some wand or sparkle dust that will turn pumpkins in royal coaches, Cinderella into a beautiful, smart, and endlessly compliant patient who gets better within time frames!

While our training might be, in part, responsible for this tendency to seek simple and shiny and new, perhaps the problem goes deeper than this. Perhaps it’s about who we choose to recruit in training – the straight A students who seem to get along with people reasonably well, and who don’t have “problems”. Perhaps it’s also about our post-graduation training (CPD) opportunities – largely fueled by the need to “show evidence” of ongoing learning – that primarily focus on simple techniques that can be taught in a weekend.

What does working with ambiguity look like? Are there models of treatment in healthcare where being OK with not knowing, perhaps discovering together with the person coming for help, where we can feel safe enough to say “I’m not ready to do anything to you until I’ve got to know you better”, or better still “I’m not ready to work with you until we’ve got to know each other better”.

What would it take to reveal some of yourself in the same way we expect our patients to? And what would that do to our relationship dynamics? And the sense of who has power and who doesn’t? Could we challenge our assumptions about who the expert is?

If we adopted a sociopsychobiological model, we might need to begin by acknowledging the complexity of human relationships. Starting with acknowledging that macro influences on assumptions we take for granted – and recognising the similarities and differences between people. We might prioritise learning about social systems, law, folkways and mores, “in” groups and “out” groups and how they work, and even review our beliefs about socio-economic status and why people might not prioritise their health.

Then we might need to reflect on psychological aspects of ourselves and others. That we have a finite amount of room for processing information so we use heuristics that reduce cognitive demand but also reduce what we pay attention to. That we, too, have emotions and assumptions and beliefs about how good we are as clinicians, and what it’s like for the other person to see us strutting our stuff.

And of course, the biological aspects underpin everything – our skin-covered anti-gravity suits through which we view the world. Still there. Still important, but filtered through the social and psychological.

Would this reduce the temptation to look for the next shiny new thing? I’m not sure – but it might broaden the range of shiny new things we’d look at. Perhaps we might become so fascinated by the sociopsychological that we’d recognise there is far more influence on what people do in these domains than we are currently trained to notice. And maybe we’d be a little less enamoured of the toys so temptingly offered at weekend workshops.

Why focus on pain management (rehabilitation)? Response to comments


My response to comments is that at this time self-efficacy (confidence you can do things despite your pain) is really low. Self-efficacy, like love, isn’t a finite resource though, although the energy required to keep on coping (balancing all the multiple demands that persistent pain has on you) can exceed current capacity. Both self-efficacy and energy are renewable resources and change over time. Love expands as we add to it. Self-efficacy increases as we have more successes. Energy renews as we find ways to fill our buckets up faster than the holes leak it out.

This post was written for health professionals, health professionals who may be inadvertently undermining what little self-efficacy an individual has by promoting a focus on what they do, rather than on what the person is using to deal with their situation. Health professionals who may well be told they must record pain intensity before and after Every. Single. Treatment. Who may not recognise just how much effort it has taken for a person to come in for a session – especially when feeling guilty or ashamed that “homework” hasn’t been achievable.

I think pain heroes do need to be celebrated. All we hear about in the media are people suffering, wanting techno-fixes and ways to get rid of their pain without recognising that for many people pain reduction just is not possible. For those who are able to live well, why not applaud their efforts – I’m not talking about their ability to get rid of their pain, but their ability to remain focused on what gives their life value and meaning – even if that’s a small fraction of what they were able to do prior to developing their pain.

I get that sometimes “pain heroes” who do amazing feats are held up as “normal”, but at the same time that’s not the story played out in most of our general media, I wonder if it’s more like the stories bandied about as examples of the latest new-fangled treatment. I often wonder if there were long-term follow-ups carried out on those folks, would they still be as positive as they were at the time their story was made?

Pain reduction as a goal doesn’t improve confidence to do activities successfully despite pain. Except in as far as a paper cut might not interfere as much with doing life as a migraine. At least some of the confusion arises from misinterpreting the measure: Pain Self Efficacy Questionnaire specifically uses the phrase “despite pain”, but I often hear people describe it as if it was “without pain”. Perhaps there needs to be a different measure “Self Efficacy Questionnaire for Doing Things With Only A Little Pain”, but currently the only measure of pain self efficacy is the one developed by Michael Nicholas.

I think it’s easy to misinterpret research about resilience as if it’s suggesting “thinking yourself out of pain” is the goal. It’s not. And that study in particular doesn’t say that, while neither did mine. In fact, “thinking yourself out of pain” isn’t achievable – good research suggests that attempting to suppress your attention to pain actually rebounds. It’s also not Pollyanna and pretending that pain doesn’t have an impact. What I think it is is a process of coming to grips with the fluctuations we all experience with pain and energy, recognising what we can and can’t do, being unafraid of our pain and knowing that it’s not going to kill us (though we may wish we could die from time to time), and finding small ways to go with our pain rather than fighting against it, wishing it wasn’t present, pretending it doesn’t have an effect when it does, trying to ignore it, or buckling underneath it and losing ourselves.

In the pain management services I’ve worked in, and the approach I take both for myself and with the people I try to work with, using pharmacological, neuromodulatory, surgical and procedural approaches to reduce pain has always been integral to the overall plan. Sadly I have not found anything that provides any pain reduction for me, I have no option but to keep going without anything. If there are things that reduce pain – and the side effects, adverse effects, or interference with the way you want to live your life are acceptable – that’s fantastic! The distinction I made in my post is the focus on pain reduction as the primary outcome. The sense that life cannot go on without pain reduction.  The thing is, life does go on whether we’re part of it, or not (and of course we can choose not to go on, but that’s death, and not an option I’d ever recommend). So, one foot after another, life does go on. I’m arguing for more than a focus on pain reduction. Because that seriously is the only outcome considered by some professionals – and some people with pain. And in pursuing only pain reduction, people lose sight of what already is going on around them. Life goes on hold, and people spend all their energy, time, and focus on how to get rid of pain. That is not living.

Wouldn’t it be great if we had something for those who find their pain overwhelms them. Sadly after working in this field for 30 years I do not think we are any closer to that elusive goal than we were when I began, except perhaps people aren’t going through quite so many useless and invasive surgeries with really nasty side effects as they did in the 1980’s. Do you not think there are so many people already seeking new and innovative treatments? And what would you like to have happen to those who may never see any of those new treatments reach them? It does not have to be an either-or situation.

What I’m finding is there is so much emphasis on pain reduction that few people are willing to provide what is already known to help people’s distress and disability. The unsexy, somewhat boring-but-necessary evils of self-regulation, reframing pain, setting teeny tiny goals, maintaining consistency, activity management, day in and day out exercise programmes, plodding through each small bump along the way. That is the reality for the many, many people who have, like you, not found anything wonderful to whisk the pain away. Demanding better treatments may not bear fruit in your life time. The only new class of analgesics are the triptans for migraine, and they were first discussed in the 1960’s, and only released onto the market in the 1990’s. Do you think there’s something hidden away for only “good” people? Seriously, there is SO much research being undertaken for all manner of wonderful treatments – but I haven’t seen much of this bear fruit in the way that you and all the other people who live with persistent pain would really like. Including me.

So, let me say, in case it wasn’t clear.

I am NOT suggesting there should be no medical interventions for people.

I AM cautious in terms of how successful they are (that’s me, the skeptic, been doing this for long enough to see the trendy things fail in the real world).

I AM suggesting it’s not worth putting life on hold in the hope that there MAY be something “just around the corner” because that’s not the case right now.

I AM arguing that clinicians who focus on pain intensity as the exclusive outcome that matters need to stop and think about what it is that people want to DO with that newfound energy if their pain did suddenly disappear.

Sometimes, in fact often, those things can be done with pain alongside. So it hasn’t happened in many people’s cases – that’s because pretty much nothing DOES work for everyone. But that doesn’t mean we should stop working really hard to continue to help people do what they can do, not letting what they can’t do get in the way of what they can.

And that is what I try to do both personally and professionally, as a person, clinician and educator.

Always look on the bright side of life!


Anyone who is older than, say, 40 years old, should be whistling right now…

For some time now I’ve been interested in how people who cope well with pain go about their daily lives. What makes this group of people different from the ones we more often see? While I know from my own research that there’s a process to get to where living life outweighs putting all the emphasis on finding a cure (note: this doesn’t mean giving up on a cure, it just means it’s a different priority), there is some research showing that how we view a situation (either as a challenge – or not) plays a role in how well we deal with it (Lazarus & Folkman, 1984).

The theory goes something like this: resilience people view pain as a challenge and believe that they have the resources to cope with it, and as a result they experience less disability and distress.

There has been a reasonable interest in resilience in coping with persistent pain since Karoly and Ruehlman (2006) found that a small but reasonable-sized group of people report moderate to severe levels of pain intensity, but don’t report high levels of interference or emotional burden. It’s thought that instead of avoiding movements or activities that are painful, this group of people may feel fear – but go on to “confront” or at least willingly experience pain as part of their recovery. What hasn’t been as well-understood is whether resilience is associated with perceiving pain as a challenge, and therefore people are more likely to do things that may hurt, or whether people believe they can face the demands of experiencing pain (ie they have self efficacy for managing pain) and this is the path by which they get on with life.

This study was carried out in mainland China, and is for this reason alone, is an interesting study (most of our understanding about pain comes from the US, Canada, Australia and the UK). China also faces an enormous burden from people being disabled by chronic pain, so this is a good step forward to understanding what might support living well with pain in this highly populated country.

The study is by Shuanghong Chen and Todd Jackson, and published last year in the journal Rehabilitation Psychology. The authors recruited 307 Chinese adults with chronic back pain (189 women, 118 men), and asked them to complete a batch of questionnaires: Connor-Davidson Resilience Scale (Chinese); Pain Appraisal Inventory (Short-form) Challenge; Pain Self-Efficacy Questionnaire; The catastrophising subscale of the Coping Strategies Questionnaire, the Chronic Pain Grade; The Multidimensional Pain Inventory-Screening (Affective Distress) subscale; and the Center for Epidemiologic Studies Depression Scale. Participants were recruited from large residential settings close to the university and two local hospitals, and participants needed to be at least 18 years old with back pain of at least 3 months duration. All the questionnaires were translated into Mandarin using back-translation. This was a cross-sectional design, so all the measures were taken at one time, and analysis performed across the group. It’s not possible, therefore, to determine causal relations, and all the calculations were carried out using structural equation modeling, therefore correlational relationships only.

What did they find out?

High resilience levels were related to elevations in primary appraisals of pain as a challenge, and in turn, higher resilience and challenge appraisal scores were each related to higher scores on the secondary appraisal measure of pain self-efficacy beliefs. Those with high scores on resilience and pain self-efficacy tended to score lower on the secondary appraisal measure of pain catastrophising. When analysing the path it was found that challenge appraisals didn’t reach significance with catastrophising or pain-related disability (such as scores on Chronic Pain Grade, Affective Distress, or Depression). Higher scores on resilience and pain self-efficacy as well as reductions in pain catastrophising were associated with lower overall dysfunction scores (Chronic Pain Grade, Affective Distress, and Depression).

Interestingly, the authors tested to see whether pain self-efficacy and pain catastrophising had a bidirectional relationship with one another – they found that yes, this did have a good fit with the data but the resilience-catastrophising path was strong than the path in the original model, while the bidirectional self-efficacy-catastrophising path was slightly less strongly associated compare with the other model.

What does all this mean for us?

Well it seems that while we attend to negative features of a person’s presentation, from this study it looks like the relationship between positive aspects (such as not thinking of pain as an incredibly negative thing (catastrophising) and believing that yes I do have resources sufficient to cope with pain) is more predictive of outcomes than simply looking at catastrophising alone. However – pain self-efficacy and pain catastrophising and poorer coping have been found significant, while general resilience (appraising pain itself as a challenge, or not) and appraising pain itself as a challenge is less strongly associated. What this suggests is that increasing a person’s beliefs that they have the capability to cope (ie self-efficacy) despite pain needs to be a priority in pain rehabilitation.

To me this is an important finding. When we as therapists attribute change in function to either less pain, or to our efforts (or the treatments, eg injections, pills, special exercises, super-duper techniques that we use), we fail to foster or support self-efficacy. Self-efficacy is a slippery concept: the measure indicates confidence to engage in activities despite pain. If our treatments focus on reducing pain intensity and don’t support the person being able to do things despite their pain, we’re likely not helping them become more confident, especially in the future.

This doesn’t mean we should tell people to “suck it up, Buttercup”. It does mean we should help people identify the strategies they have (or can develop) to be able to continue with activity in the face of pain fluctuations. Of course this means we need to be comfortable with the idea that it’s OK to do things despite pain! If we still hold a sneaky suspicion that it’s not OK to be sore and do things, we’re likely to inadvertently (or perhaps overtly) encourage people to ease up, back off, or generally stop when they’re sore. Asking people how sore they are at each treatment is likely not to increase confidence that it’s OK to move. Commiserating over how painful it is and how tough it is may be unhelpful!

What can we do instead?

I think we can draw a lot from motivational interviewing. No, not the stages of change, but the part where we acknowledge that despite it being difficult, the person did something that moved them towards a more positive choice. What this might look like is “Hey you had a tough week, but it’s fantastic that you made it here today so we can look at what you carried on with”. It might include “While it’s been a flare-up week for you, you were still aware of your goals and had a go”. Or “Look at how you stayed the course despite the bumps in the road”.

Sticking with the idea that actions, or habits count more than results can be useful, because we’re helping people build long-term lifestyle changes that will sustain them over time. Yes, results are really cool and we want to see them (so don’t stop recording wins!), but at the same time, it’s vital we celebrate the daily choices a person makes to keep going and doing.

I think we can also help build self-efficacy by drawing on pain heroes. People who have maintained a good lifestyle despite their pain. Celebrating those who are grinding through, even though they have tough times. Perhaps other people in the clinic who are also managing pain. From self-efficacy research we know that vicarious learning (watching how others perform in the same situation) is one of the ways we boost our confidence to succeed. Group-work may be a useful approach for encouraging people to know they’re not alone, they can make progress, and that they’re doing OK.

So…. looking on the bright side of life doesn’t mean ignoring challenges, but it does mean viewing them as challenges rather than insurmountable obstacles. Our approach to pain – is it something to get rid of, or is it something to learn from and something we can manage – may give people encouragement to persist, or it may undermine coping. What’s your view?


Chen, S., & Jackson, T. (2018). Pain Beliefs Mediate Relations Between General Resilience and Dysfunction From Chronic Back Pain. Rehabilitation Psychology, 63(4), 604–611.

Karoly, P., & Ruehlman, L. S. (2006). Psychological “resilience” and its correlates in chronic pain: Findings from a national community sample. Pain, 123, 90–97. http://dx.doi.org/10.1016/j.pain.2006.02.014

Lazarus, R. S., & Folkman, S. (1984). Stress, appraisal, and coping. New York, NY: Springer.

Knowledge translation: A home for occupational therapy?


Modern occupational therapy is involved with helping people participate in daily life in the real world. Indeed, occupational therapy has always been about “doing” – see here for a brief history of occupational therapy – but it has been difficult, in a strongly reductionist and biomedical context, to articulate the unique and particular contribution occupational therapy makes within healthcare.

In a conversation last week with Dr Mary Butler from Otago Polytechnic, we were discussing our areas of research. I mentioned that knowledge translation, or helping clinicians use research that is often locked up in peer-reviewed journals, is my passion. Something clicked and we both recognised that the process of translating from one “artificial” setting to the real world is where both of us feel completely at home. As our conversation rambled (we know how to talk!), we described the way we go about contributing to research and clinical practice: looking from the evidence-based material or research in daily life, to where this knowledge needs to be applied. Our passion is understanding the where/how/why/what that gets in the way of bringing evidence to the lived experience, whether that be researching how an older person with poor vision might avoid falls (change the lightbulbs for brighter ones – it can help!), or working out a clinical reasoning model to help therapists think broadly about pain and factors influencing disability.

Knowledge translation is an area of research and practice that bridges the gap between journal articles and implementation. It involves identifying needs in the real world (read: practice area), identifying or developing research to solve those problems, making the solutions (research) accessible, then adopting and modifying that information as it’s implemented so that it does what it needs to do.

For occupational therapists, this is work as usual. We work with the person to identify their needs: what does this person want and need to do in daily life? We then scour our knowledge bases, often assessing the person’s capabilities, understanding the context and environment, research the constraints on the person’s participation and establish the obstacles that prevent this person from participating in what they want and need to do. We then tailor the solutions to fit the unique demands of the person, the task (or occupation) and the contexts, and help the person implement the solution so they can participate.

And this is why it’s so difficult to answer that seemingly simple question: What can you offer people? Why should I refer to you? What do you do? Because my answer will almost always be “it depends …!”

Working in pain management as I do, I draw on pain research across basic science, biology, biomechanics, physiology, sociology, anthropology, psychology in many different fields. I also need to know about pharmacology, kinesiology, strength and fitness research, and yes I even have to read about surgery, physiotherapy, nursing, post-operative recovery. Because the people I work with have relationships with others, I need to understand relationship dynamics, employer/employee relations, collegial relations at work, friendships, mateships and both introversion and extraversion. I could go on – but the point is not just how many fields I need to be conversant with, it’s that the way I use this knowledge is unique to occupational therapy. Let me elaborate.

All those fields of knowledge are relevant to my work, but the area that is utterly unique to occupational therapy is understanding the interaction between this person and his/her many different participation contexts. This means that I might be working on graded exposure to the fear of bending forward. A physiotherapist may have been working on this in a gym or fitness context – but this environment is controlled, there is a therapist hovering near, the loads and positions and floor surface and lighting and number of people around and noise level is all controlled and fairly consistent. As an occupational therapist, my job is to help this person generalise the fear reduction experienced in the gym to every day life. That means loading things into the boot of the car, or over the back seat of the car, or the laundry basket, or picking up the clothes off the floordrobe in the teens bedroom, or picking up the dog pooh from the back yard, or bending to weed the garden, or bending to put the shoes and socks on, or clean the bottom of the bath or shower. I have to help the person identify where they need to bend over, and grade the demands to a level that the person can only just manage – so he or she can push towards increasing confidence in any situation.

Translating from one context to another doesn’t always happen by itself. I’m sure there are many times we’ve seen someone walking beautifully, using the painful foot with a completely correct heel-toe pattern in the clinic – then perhaps unexpectedly meeting the person in the shopping mall on a wet day when the floor is slippery only to find he or she is leaning on the shopping trolley, limping and hardly putting any weight on the foot at all.

Knowing about a strategy doesn’t mean it’s used in the real context in which it’s needed. A mindfulness meditation carried out in clinic, where it’s quiet and there are no distractions, and no children saying “what’s for dinner!” and no partner coming home after a busy day wanting to decompress by talking… is a very different experience carried out at home! And this complexity is the practice space for occupational therapists. It looks like “doing meditation” and “oh but we’ve done that in one session” – but it’s a complex balancing of priorities, establishing boundaries, caring sufficiently for oneself over others, being willing to bring the mind back repeatedly as salient thoughts and sounds intrude.

I think that many clinicians assume that what is done in treatment has carryover into daily life. I would argue that this gap between knowing and doing, discussed so much in knowledge translation about research and clinical practice, is precisely what is missing in much of our pain rehabilitation. We may not even recognise that the person hasn’t integrated the skills we’ve been focusing on: why? Because we don’t enter the person’s everyday life.

Some of the things occupational therapists focus on so much include meaning and values, the social context, the physical environment, the cognitive and sensory environment – and at times, we can forget that we draw on foundation science in our treatment approach, so we hand out long-handled reachers for picking the clothes up from the floordrobe, forgetting that it’s possible for people to learn how to bend over without fear… and that’s a conversation for occupational therapists to have. I hope that by starting to recognise our “knowledge translation” space, we might gain more confidence to read research well outside “occupational” areas, and begin to consider how we can apply what other disciplines study to the everyday lives of the people we help.


The “onion ring” model of pain


Clinicians constantly search for a better way to describe the tangled mess that constitutes ways to explore pain. Today I’m hoping to add another way, but hopefully one that might help disentangle certain aspects of pain for ease of learning. And as usual, it’s largely not my own model, but one first developed by Professor John Loeser, eminent neurologist and neurosurgeon and Director of the Multidisciplinary Pain Center from 1982-1997 at the University of Washington.

There are many different versions of the ‘Onion ring’ model – Gordon Waddell, orthopaedic surgeon and contemporary of Loeser also developed one, and more recently we’ve seen a version from Lorimer Moseley and colleagues in NOI publications. I’m going back to Loeser’s one because I think it’s useful – and in the case of conceptual models like this utility is the measure by which we decide to adopt a model or not. You be the judge. This is my public announcement that this is not intended to be a scientific model for generating and testing hypotheses: it’s meant to be an explanatory metaphor, if you like.

OK, so what is this model?

Like any onion, the model has inner to outer layers, but unlike an onion, these layers are permeable, and slightly fuzzy. They interact with one another, and the resultant whole is intended to reflect the experience of pain, along with the aspects that you and I might see – and includes various factors thought to influence the experience. It’s incomplete because much of what is known about pain is incomplete. It can’t explain everything, because no metaphor can – but it does provide some hooks for our minds to grab onto when we’re accessing new information and we want to establish relevance and recognition.

Loeser’s Onion Ring Model (1983)

The purple ring in the centre is all about neurobiology for me. Loeser’s original model labeled this “nociception”, but since 1983 we’ve learned a great deal more about the neurobiology of pain and we know that pain in the absence of nociception is probably a product of something gone awry in the way our nociceptive system is interpreting information. It could be neuropathic pain (where there is an identifiable lesion of the somatosensory system), or it might be nociplastic pain ( “pain that arises from altered nociception despite no clear evidence of actual or threatened tissue damage causing the activation of peripheral nociceptors or evidence for disease or lesion of the somatosensory system causing the pain.” – click). At this level of the model this is not pain. This inner ring refers only to biological processes prior to conscious awareness.

The next ring (dark blue) refers to the conscious experience we have of pain. This is the part we personally experience – it’s subjective, unpleasant, sensory and emotional, and we learn to associate this experience with potential or actual tissue damage, or we describe it in similar ways. In many respects this is the quale – the quality of what-it-is-like to experience pain – although others would argue it is an aporia (In philosophy, Aporia means literally ‘impasse, difficulty in passage, lack of resources, puzzlement’). However we like to define it, this part of Loeser’s model refers to the experience once our brain/mind has deemed it relevant to our predicament.

But, as the saying goes, wait! There’s more!

Because this dark blue ring is experiential, we can’t share it, or even know about another’s experience unless we do something about it, and before we do something about it, we appraise or judge it. With some provisos (told you this was a metaphor not a testable model!).

Drawing from cognitive models, Loeser then wraps another ring around the experience “pain” – this is what he described as suffering, but I prefer to describe as “judgement” or “appraisal”. Suffering is a judgement that this experience is threatening our essential self, our future (Cassel, 1999). So while there are certain behaviours that occur prior to awareness or judgement (see this) as soon as we are consciously aware of pain we’re judging that experience. And probably, because brains don’t just sit there waiting for information to come towards it, there is a good deal of permeability between the neurobiology ring, the pain-experience ring, and this ring. But for simplicity’s sake, let’s take it that when we experience “ouch” we typically check it out and interpret the meaning of that ouch in context of where we are, what we’re currently doing, who we’re with, and our past experiences. This interpretation or judgement phase can augment the meaning of pain to increase its threat value, or vice versa (OMG that was a snake bite! or Oh that was a bruise I didn’t need).

Wrapping around that “judgement” ring is a further ring – and this is possibly the one we most need to come to grips with. This ring is the behavioural response to our appraised experience. Pain behaviour or what we do when we recognise and judge our experience of pain is complex. It’s complex because all human behaviour is complex. It’s also complicated because we naively judge one another on the basis of what we see – and our own assumptions about what that behaviour might mean.

Behaviours include nocifensive responses, but don’t stop there. As we develop and mature from babyhood to adulthood, we embroider and alter our behavioural response to pain, just as we do with our appraisals. As babies we’re likely to scream our lungs out at the heel prick test at birth. I hope we don’t do that when we get a flu jab (and I truly hope you DO get a flu jab, and if you’re in Christchurch New Zealand that you get a measles immunisation pronto). We learn what to do from watching others (social learning), from others responses to us (operant conditioning), and from events that occur at the same time as our pain occurs (classical conditioning). Social learning is powerful – within different cultural groups, peer groups and family groups, we learn what is normal and OK to do when we’re sore. We also get rewarded (or not) for the way we behave. Little kids get told “stop that crying, it’s nothing” when they stub a toe, or they might get cuddled instead. Footballers get extra time if they roll around on the ground with an injury during a match; rugby players get adulation when they carry on playing despite a rib fracture or two. And for some people, associating a movement with pain can lead to longstanding limitations and avoiding that same movement in case it brings the pain on.

Pain behaviours include language and even that old “pain rating scale”. We use language and nonverbal behaviour to communicate. So when someone says “my pain is 12/10” what they’re really saying is “this is more than I can bear, help me”. We do not have a pure measure of how intense a pain is – and any measure of intensity is likely filtered through a process of judgement “what does this mean for me?” and communication “what will happen if I say X number?” So stop judging someone if they say their pain is 12/10 – it means they’re freaking out, and need comfort.

If you’re smart you’ll notice that I’ve sneakily been discussing the final onion ring, and to be fair, Loeser didn’t include this in his version – it’s one that Waddell, Main, and others have added and I think it’s integral to understanding what’s going on so I’ve added it too. The outer ring refers to the social context because this influences what people do (pain behaviours) as I’ve just outlined. It also includes social factors such as the workplace and compensation, legislation covering what is and isn’t covered in insurance plans, our community attitudes towards people who are experiencing pain, stigma and social isolation and sense of online community and such.

Loeser’s onion ring provides me with some nice ways to separate parts of my understanding of pain so I can explain how and why we need to examine them and influence them separately. Health professionals are always and inevitably influencing the judgement, behaviour, and social aspects of pain. Sometimes we get to influence the neurobiology and through interactions between all these layers, sometimes the experience of pain is reduced. Other times it is not. At the same time, if we can begin to shift the judgements and what we do about pain and yes, the social contexts in which experiencing weird unexplained pain is viewed as a moral failing or attempt to “get secondary gain”, maybe then we can help people live better lives despite their pain.

Cassell, E. J. (1999). Diagnosing Suffering: A Perspective. Annals of Internal Medicine, 131(7), 531-534. doi:10.7326/0003-4819-131-7-199910050-00009

Loeser JD, Ford WE. Chronic Pain. In: Carr JE, Dengerink HA, (eds). Behavioral Science in the Practice of Medicine. New York: Elsevier Biomedical:1983:331-345