Science in practice

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.

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.

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.

Why reducing pain intensity doesn’t always mean a better outcome


There have recently been some studies published on meta-analyses of “pain education”. I’ve made my stance clear on what I think of “pain education” particularly as a stand-alone intervention here and here and why I think we need to look beyond pain intensity reduction as The Outcome of Choice. In this brief post I want to look at some of the variables that influence both pain behaviour and pain intensity.

We all know that pain is subjective: this means it can’t be directly shared with anyone, and no-one is able to determine just how sore any other person is (that includes people who believe they can spot faking or malingering. Stop it! You can’t, not for pain). What this also means, though, is that for us as clinicians to understand what it is like for another person to be experiencing pain, we must infer on the basis of what they do (ie behaviours).

Mostly with adults, we infer the severity of pain on the basis of the dreaded visual analogue scale or the numeric rating scale – “what is your pain on a 0 – 10 scale where 0 = no pain at all and 10 = most extreme pain you can imagine.” In people who either don’t speak our language, or who can’t respond with words, we rely on inferences drawn from their “body language” or nonverbal behaviour.

Many pain behaviours begin as useful evolutionary responses to threat: physiological arousal, reflex withdrawal, verbal groans and gasps. These serve to help us withdraw from the stimulus, help us escape the threat (or freeze or fight it), and signals that we need help (and avoid this threat) because we’re social animals. At the same time, behaviours are subject to behavioural reinforcement as well as cognitive biases, memories and so on. An example: If someone goes to the Emergency Department and reports their pain is 3/10, they’re unlikely to receive heavy-duty analgesia. You can bet that if they attend ED on another occasion, they’ll remember this and report their pain to be a little higher. Now often this isn’t a conscious decision, it’s something we learn over time and throughout our lives, so we may be oblivious to how we alter our verbal and nonverbal behaviour as a response to events in the environment and our own interpretations of what’s going on.

Pain is also rarely a static, consistent experience. Pain typically varies over the course of time. It can be episodic and pulsing and rhythmic, or it may come in waves, it might fluctuate unpredictably: in part this variability is a product of the stimulus, but also physiological processes such as habituation, attentional demands can mean we’re more or less “tuned in” to being aware of pain, and our emotional state is also part of the picture.

Finally (or not, depending on my whim!), our response to pain depends on our interpretation of its meaning and significance. When we’re tired and feeling down, and the pain seems mysterious and very threatening because we have things to do and no-one can tell us what the diagnosis is we’re more likely to increase our awareness and our behaviour associated with that experience. Maybe we’ll report it as 9/10 because it seems to intrude on life, the universe and our very existence as we know it. Maybe we’ll be really afraid and don’t think we can cope with it even though we usually do, so we’ll report it as 12/10. Maybe we’re not experiencing pain right now but we think that if we do something wrong we’ll get the pain back (think of angina here), so we just don’t do things “in case”. And maybe we’ve been told not to do things because it might be harmful, so we don’t do those things, our pain is around its usual level but we feel constrained and report it as 7/10 because we’re fed up with it all.

We know that part of the challenge of pain is that it’s incompletely understood (I use the word “it” as a placeholder for the rather more wordy “our experience of pain”). We do have pretty good means of reducing pain, but the problem is that these leave us incapable of doing very much because the most effective approach is simply to lose consciousness. But life doesn’t permit us to do that for long without adverse consequences! And for many people, even the best analgesia is only likely to reduce pain by about 30%, if at all.

When someone has learned to reinterpret their pain as not terribly threatening, still annoying and frustrating and demoralising, but not indicating that the body/self is about to come to serious harm, it’s possible to look well but feel awful inside. In other words, the pain intensity and quality doesn’t change an awful lot, but because it’s no longer associated with existential threat to self, it’s possible to put on makeup, groom well, interact happily, and look “normal”. How do I know this? Well – that’s what I do every day.

So using pain intensity as a guide to how well a person has recovered or adjusted to their pain is not an especially reliable guide as to how much pain is bothering them. The relationship between pain intensity and what we can and cannot do is uncertain and complex. And behaviour change is not easy. Doing things differently involves a whole cascade of changes that need to be implemented, not the least of which is learning how to regulate physiological arousal, reconceptualising the pain experience as something that can be lived with, redirecting attention towards things that matter to us, developing motor control and strength when this has changed – but possibly the most complex and ignored involves responding to, or altering our response to other people’s behaviours.

This means navigating other’s expectations from us (some people are afraid that when a person begins doing things again they’re going to make their pain worse and fail, others are expecting return to “normal” without factoring in that pain IS a significant challenge to deal with), and their behavioural responses to what we do. Many of the people I work with who live with pain talk about losing friendships, not being able to keep up with others, being misunderstood, being ignored or punished with angry reactions because they’re not the same person they were before their encounter with weird prolonged pain. And these are only the responses at an individual and small group level! What about the perverse disincentives to return to usual activities, like losing compensation prematurely, or having to return to a job that is not the job you left and you feel unprepared for or overskilled and unappreciated? Legislation that is written for “normal” recovery from illness or injury but doesn’t include persistent pain. Processes that mean you have to prove disability repeatedly just to retain access to services or income.

So, even if clinicians find that their treatment reduces pain, it may not lead to the outcomes clinicians want to see: a happy, active and engaged person. Sometimes it can lead to ongoing life restrictions (think angina again). Sometimes it can lead to erratic activity patterns. Sometimes those other factors influence how the person goes about life and not in a good way.

Echoing something written repeatedly over the decades in pain research literature, I want to quote from Ballantyne and Sullivan (2015). This article challenges clinicians to rethink pain reduction as the primary outcome measure for persistent pain in the face of increasing opioid use (now reducing but often without subtlety or support) because of the very issues I’ve outlined above. They state the following:

Suffering may be related as much to the meaning of pain as to its intensity. Persistent helplessness and hopelessness may be the root causes of suffering for patients with chronic pain yet be reflected in a report of high pain intensity.

And conclude their article with this:

When pain is chronic, its intensity isn’t a simple measure of something that can be easily fixed. Multiple measures of the complex causes and consequences of pain are needed to elucidate a person’s pain and inform multimodal treatment. But no quantitative summary of these measures will adequately capture the burden or the meaning of chronic pain for a particular patient. For this purpose, nothing is more revealing or therapeutic than a conversation between a patient and a clinician, which allows the patient to be heard and the clinician to appreciate the patient’s experiences and offer empathy, encouragement, mentorship, and hope.

Emphasis is entirely mine. And heartfelt.

Ballantyne, J. C., & Sullivan, M. D. (2015). Intensity of chronic pain—the wrong metric? New England Journal of Medicine, 373(22), 2098-2099.

Reconciling uncertainty and the drive to diagnose


Recently it was suggested to me that even though I’m an occupational therapist, I might “diagnose”. Not so much diagnose disease, but “determine if a patient is depressed, anxious, catastrophising, fear avoidant etc?” The author goes on to say “isn’t that diagnosis too?” The comment was made in the context of a lengthy Twitter discussion about so-called “non-specific” low back pain. Over the course of I think about five weeks now, a large number of highly educated, erudite and passionate clinicians have argued the toss about whether it’s possible to identify the “cause” of nonspecific low back pain. On the odd occasion I’ve put my oar in to mention psychosocial aspects and that people seek help for many reasons, one of which may be pain intensity, but mostly people ask for help because either the pain is interfering with being able to do things, or because the person interprets their pain as an indication, perhaps, of something nasty.

I mention this context, because over the many tweets, I was struck by the degree of certainty demanded by various commentators on both sides of the discussion. “Where’s the gold standard?”; “What’s the evidence”; “Yes”; “No” – and in many respects, diagnosis is a practice based on degrees of certainty. You either have a disease – or you don’t. You have the signs and symptoms – or you don’t. Unless, of course, it’s the creeping edge of “pre-diagnosis” like my “pre-diabetes”.

In October I wrote about clinical enquiry, which is described by Engebretsen and colleagues (2015) as a complicated process (sure is!) of 4 overlapping, intertwined phases: (a) data collection – of self reported sensations, observations, otherwise known as “something is wrong and needs explaining”; (b) data interpreting “what might this mean?” by synthesising the data and working to recognise possible answers, or understanding; (c) weighing up alternative interpretations by judging; and (d) deciding what to do next, “what is the right thing to do”, or deliberation.

For, irrespective of our certainty about the precision of any particular test or ultimately a diagnosis, all of our work involves two people who must collaborate to follow the process outlined by Engebretsen and colleagues. That is, the person seeking help notices “something is wrong and needs explaining”, he or she communicates selected information to a knowledgeable person (a clinician) and that clinician will typically seek more information, and assemble this in some way (synthesise). In my case I like to do this assemblage in collaboration with the person so we can weigh up or judge various interpretations of that data. I bring some knowledge from my training and ongoing learning, while the person brings his or her intimate knowledge of what it is like to be experiencing that “something is wrong.” There are times when we are both in the dark and we need to collect some more information: for while the person knows what it is like to be in this predicament, there are likely factors not yet incorporated (or noticed) into the picture. For example, guided discovery or Socratic questioning usually involves exploring something the person is aware of but hadn’t considered relevant, or hadn’t joined the dots. I don’t think it takes rocket science to see just how messy and complex this communication and information synthesising process can be – it only takes a person to fail to provide a piece of information (because they don’t think it’s relevant) for the analysis to go awry.

I like the depiction of the diagnostic process described in Britannica.com because throughout the process, the diagnosis is held lightly. It’s provisional. The process of diagnosing is seen as a series of hypotheses that are tested as the treatment progresses. In other words, despite beginning treatment, clinicians are constantly testing the adequacy and accuracy of their clinical reasoning, being ready to change tack should the outcome not quite stack up.

As a clinician and commentator who focuses on the relationship between people with pain and the clinicians they see, it strikes me yet again that the process of diagnosis is often one of relative uncertainty. While it’s pretty easy to determine that a bone is fractured, when pain is the presenting problem and because imaging cannot show pain (and when there are few other clear-cut signs), the clinical reasoning process is far more uncertain.

As I would expect, I’m not the first person to ponder the certainty and uncertainty dilemma in diagnosis. Some of my favourite authors, Kersti Malterud and colleagues (and especially Anne-Marie Jutel!) wrote an editorial for the British Journal of General Practice in which they argue that uncertainty, far from being “the new Achilles heel of general practice (Jones, 2016), instead is absolutely typical of the complexity involved in general practice diagnostic work. They go on to say “The nature of clinical knowledge rests on interpretation and judgment of bits and pieces of information which will always be partial and situated. In this commentary, we argue that the quality of diagnosis in general practice is compromised by believing that uncertainty can, and should, be eliminated.” (p. 244).

In their editorial, Malterud and colleagues point out that the person’s story is essential for diagnosis – and that people have all sorts of reasons for not disclosing everything a clinician might want to know. One of those reasons may well be the clinician’s capability for demonstrating willingness to listen. They also argue that models of disease are social and therefore dynamic (ie what we consider to be disease shifts – pre-diabetes is a good example). People who don’t fit the received model of “what a symptom should be” may not be heard (think of women with heart disease may not present in the same way as men), while those with “medically unexplained” problems just do not fit a disease model.

They make the point that clinicians need to recognise that clinical testing “does not eliminate uncertainty, rather the opposite as it introduces false positive and negative results.” For my money, diagnostic testing should only be used if, as a result of that diagnosis, clinical management will change – and just to add another dollop of my opinion, I’d rather avoid testing if not only does clinical management not change, but outcomes are no different!

I think the call for certainty emerges from what Malterud and co describe as “The rationalist tradition” which “seeks to provide a world of apparent security where certainty is readily achievable.” The problems of both low back pain and many types of mental illness demonstrate very clearly that knowledge allowing us to be certain only covers a tiny amount of the territory of ill health. There is more unknown and uncertain than certain.

I’ll end with this quote from Malterud and co’s paper “Clinical practice must therefore develop and rely on epistemological rules beyond prediction and accuracy, acknowledging uncertainty as an important feature of knowledge and decision making. Nowotny (2016) suggests the notion ‘cunning of uncertainty’ as a strategy where we get to know uncertainty and acquire the skills to live with it.” In occupational therapy practice, uncertainty is always present in our problem-solving process – and consequently I don’t “diagnose”. I never know the effect of a tendency to “think the worst” or “worry” or “avoid because I’m scared” – the constructs it was suggested that I “diagnose”. Firstly because while I might recognise a pattern or tendency – I don’t know when, where, how or why the person may do that thing. And context, purpose, motivation and response all matter when it comes to people and what they do. And secondly, diagnosing suggests that we have a clear and specific approach to treat – and in most of my clinical work, certainty around outcome is definitely not a thing. We never really know if our suggestions are “right” because most of the impact of what we suggest is on the person within his or her own life. In my practice the outcomes ultimately determine how well I’ve worked with someone. Perhaps NSLBP is another of these human predicaments where being certain is less advantageous than embracing uncertainty and an unfolding narrative in someone’s life.



Engebretsen, E., Vøllestad, N. K., Wahl, A. K., Robinson, H. S., & Heggen, K. (2015). Unpacking the process of interpretation in evidence‐based decision making. Journal of Evaluation in Clinical Practice, 21(3), 529-531.

Malterud, K., Guassora, A. D., Reventlow, S., & Jutel, A. (2017). Embracing uncertainty to advance diagnosis in general practice. British Journal of General Practice, 67(659), 244-245. doi:10.3399/bjgp17X690941

Nowotny H. The cunning of uncertainty. Cambridge: Polity Press, 2016

Why do clinicians fear telling people their pain may persist?


There is a big void in our understanding of interactions between clinicians and people who live with persistent pain, and that vacuum is about how people learn that their pain is not going anywhere soon. Recently I searched for qualitative research examining the conversations between clinicians and patients at the moment of diagnosis: that moment when a clinician says “I’m sorry, but you’ve tried all there is to try, and it looks like your pain might not respond”. Or it might be “We’ve found out what your problem is, but we know that right now, there aren’t any very effective treatments”.

Oddly enough – or perhaps not – this is incredibly difficult to find. I wasn’t able to locate any specific studies (though if someone else has found some I’d be very happy to get a list!). The closest I found was a synthesis of qualitative studies by Toye, Seers and Barker (2017) looking at the experiences of healthcare professionals while treating people with persistent pain. In it, the authors identify six themes that seemed apparent after synthesising the included studies:

  • Skepticism in medicine where a person is ill – but diagnosis is difficult. The authors point to the strong culture within medicine in which subjectivity is valued less (they say “shunned”) than objectivity. But of course, pain is always subjective.
  • Clinicians have to “do the work” of reconciling the person they see in front of them and the absence of objective clinical findings – this is difficult when a biomedical model is preferred over a biopsychosocial model. (I could add here that unless that biopsychosocial model is truly integrated as a whole, it could turn into a dichotomous not “bio” then “psychosocial” but that’s another discussion)…
  • Clinicians also have to work in a space where either their clinical knowledge is not relevant, or it’s actively unhelpful, meanwhile trying to help a person who wants and needs certainty and support.
  • Clinicians also have a dual duty: responding to the person who is distressed while also remaining aware that some of what the person wants may not be helpful or good – with some of the concerns being also about the healthcare system, and using investigations that are unnecessary and wasteful.
  • As a result of these multiple demands on clinical balance, clinicians may bear a personal cost in terms of emotional energy, empathy and perhaps as a result find it difficult to want to engage with people for whom they feel the “work” will be hard and unrewarding.
  • Ultimately, clinicians working in this field develop a “craft of pain management” which they believe defies algorithms and categorisations, and instead is an ongoing interplay of call and response.

I can completely understand these challenges. If clinicians “measures of success” are resolution or a problem, or at least effective management of a problem, the difficulty in most instances of persistent neuropathic or nociplastic pain is the limited number of medications, and their relatively poor effectiveness. And other approaches (exercise, coping strategies etc) are equally limited. So – we might need to establish a different measure of success, and that’s hard.

In the absence of research discussing clinician’s ways of giving a diagnosis, I asked people with persistent pain on a social media group to give me their account of how they were given the news about persistent pain. The themes that emerged were:

  • No-one told me my pain would persist.
  • Despite surrounding myself with a broad multidisciplinary team, no-one broached the subject.
  • Pointing to the presence of supposed pathology – “you’ll need surgery”
  • “what we’re doing isn’t helping” – despite best efforts.
  • Being put into a category of people who can’t be helped.
  • No-one showed me how to live with this pain
  • Being told casually as if it were no big deal – this shouldn’t have a big impact on you.
  • I was told there’s no cure, no effective treatment and the idea is to make life tolerable but I will probably never be pain free.
  • The diagnosis of a disease was given – but I wasn’t told it was the reason I hurt.
  • You have chronic pain and there’s not likely to be a cure in your lifetime.

In my interactions with people online, both people with pain and those hoping to treat, I’ve heard a number of opinions: we should never “give up” on pain reduction; we don’t want to “kill hope”; there’s always something we can do …

Here are a few questions:

  • When do we admit we don’t have a 100% success rate for treating persistent pain?
  • Given that people with pain often put their lives on hold until there is a diagnosis and treatment plan (usually aimed at pain reduction and/or cure) – how long does someone need to put their life on hold until we acknowledge that the cost of waiting outweighs the uncertain benefits of pain reduction?
  • Is this a decision we as clinicians should make? If it’s a collaborative decision, do we provide people living with pain an unbiased and neutral view of their options?
  • Fundamentally, do we fear living with pain ourselves, and does this in part fuel our desire to keep treating?
  • What do you think it’s like for a person living with pain to never be told that this is reality? Because people will blame themselves (for not trying hard enough), blame their health professionals (for not looking hard enough), blame the system (for not funding enough) – when actually there is no secret stash of treatments for people who are “good enough” to get them.
  • If someone is told “chances are high this won’t resolve quickly, if at all” does this mean nothing will ever change? Or simply that we’re giving permission to ourselves and the person to find ways to have a meaningful life with pain? What if we conveyed the reality that currently there may not be a way to reduce pain, but this doesn’t mean it will be forever – and in the meantime we can work together to create a life that is fulfilling?

I guess the sad thing for me is that even though we’ve had persistent pain management programmes available in various forms since the 1970’s, with the flush particularly evident in the 1990’s and waning ever since, people are still not given the opportunity to have good support while learning how to live well with pain.

Because until we have at least a 90% success rate with our treatments for persistent pain, I think we need to be humble and admit these approaches are still needed.

Toye, F., Seers, K., & Barker, K. L. (2017). Meta-ethnography to understand healthcare professionals’ experience of treating adults with chronic non-malignant pain. BMJ Open, 7(12), e018411. doi:10.1136/bmjopen-2017-018411

On the problem of coping


Coping. Lots of meanings, lots of negative connotations, used widely by health professionals, rejected by others (why would you need coping skills if you can get rid of your pain?).

I’ll bet one of the problems with coping is that we don’t really know what we’re defining. Is coping the result of dealing with something? Or is it the process of dealing with something? Or is it the range of strategies used when dealing with something? What if, after having dealt with the ‘something’ that shook our world, the world doesn’t go back to the way it was? What if ‘coping’ becomes a way of living?

The reason this topic came up for me is having just written a review for Paincloud on activity patterns (Cane, Nielson & Mazmanian, 2018), I got to thinking about the way we conceptualise ‘problems’ in life.  It’s like we imagine that life is going along its merry way, then all of a sudden and out of the blue – WHAM! An event happens to stop us in our tracks and we have to deal with it.

But let’s step back for a minute: how many of us have a well-ordered, bimbling existence where life is going along without any hiccoughs?!

Back to coping. The concept of coping is defined by Lazarus and Folkman (1980) as “the cognitive and behavioral efforts made to master, tolerate, or reduce external and internal demands and conflicts among them.” It’s identified as a transactional process and one that occurs within a context where the person has both resources and constraints, and a direction in which he or she wants to go.

By contrast, if we look at the research into coping in people with persistent pain, most of the attention is on the “what the person does” and the resources he or she has (see for example Rosenstiel & Keefe, 1983; Jensen, Turner, Romano & Karoly, 1991; Snow-Turkey, Norris & Tan, 1996; and much more recently, measures of coping by Sleijswer-Koehorst, Bijker, Cuijpers, Scholten-Peeters & Coppieters, in press). There are some studies exploring the goals set by the person (Schmitz, Saile & Nilges, 1996), but few studies examine the context in which the person is coping – nor what happens once the coping efforts are successful.

Measuring coping falls into three main buckets: the repertoire (how many strategies do you have?); the variation (which ones do you use and do they match the demands?); and the fitness approach (the choice of strategy depends on the way a person appraises the situation) (Kato, 2012). Out of these three, Kato chose to develop a measure of coping flexibility. Coping flexibility refers to “the ability to discontinue an ineffective coping strategy, and produce and implement an alternative coping strategy”. The Coping Flexibility Scale aims to measure this ability, based on the idea that by appraising the situation, implementing a strategy, then appraising the effectiveness of that strategy and applying a new one, the person is more effective at dealing with the challenge.

One of the most popular measures of coping for pain is the 14-item Coping Strategies Questionnaire (Riddle & Jensen, 2013). It suggests different ways of coping, some of which are seen as helpful, while others are not. Oddly enough, and why I started writing this blog, it doesn’t include the way we go about daily activities – activity patterns. In the study by Cane, Nielson & Maxmanian (2018), two main forms of activity pattern were found: avoidant-pacing, and  overdoing (as measured by the Patterns of Activity Measure – Pain). The avoidant-pacing group used pacing for daily activity management, but did so with the intention of avoiding flare-ups. The overdoing group just did a lot of activity. After treatment, some people moved group – from the two original groups, two more emerged: avoidant-pacing, pacing, mixed and overdoing. The pacing group basically did what everyone says is a great way to manage pain: picking out the right level of activity and sticking with it, using a quote-based approach. The definition used in this study was “… preplanned strategy that involved breaking activities into smaller parts, alternating periods of activity and rest (or an alternate activity), and using predetermined time intervals (or quotas) to establish when to stop an activity. The description of activity pacing provided to patients identified the goal or function of activity pacing as facilitating the completion of activities and ultimately increasing overall activity and functioning.”

As usual there are vulnerabilities in the way this study was conducted, and the main one for me is the follow-up period is non-existent. The reason I worry about this is that in my daily life, as I’m sure happens in many of yours, my pattern of activity varies wildly from week to week. Some weeks, like the weeks just before I headed to Sunderland for Paincloud, and the weeks just after I got back, were incredibly busy. I pushed myself to get things done because there were a heap of deadlines! This week I plan to have some down-time – this afternoon, in fact, because I want to play with some silversmithing.

And it occurred to me that we expect such a lot from the people we work with who live with pain. We ask all sorts of intrusive questions about daily life and we expect people to be able to recall what they did, why they did it, and to make changes and be consistent about these until we’re satisfied they’re “coping”.

But what if coping is actually the way we live our lives? What if coping involves all the myriad self-evaluative activities we all do – like, how hungry, tired, irritable, frustrated, rushed, achey, restless, enthusiastic, apologetic we feel – and endlessly and constantly adjusting the actions and behaviours we do so we can do what, for a moment or two, we think is The Most Important thing for now.

Life is a constant flowing forward. It’s a stream, an avalanche, a train going one way only. We can’t stop the world to get off. And once we’ve “coped” with something, life doesn’t return to “normal” because we’re different. Maybe our priorities change, or our circumstances have, or we have a new insight into what we want, or we work out the goal we had is more important than we thought. What if we are expecting the people who live with pain to do something we’re not even capable of?

I suppose part of my musing is related to mindfulness. Mindfulness involves continually returning to what I want to pay attention to, and doing so without judgement, and also observing without judgement. But it always involves coming back to what I intend to attend to. On and on and on. And the lovely thing about it is that it’s endlessly gentle and forgiving. Let go of the things I forgot to do, or the rushing towards what needs doing. I wonder what would happen if we encouraged people to be mindful for brief moments throughout the day all day long. Would that encourage coping flexibility? Would it encourage using a broader repertoire of ways of dealing with things? Would it help people to be more aware of everyday choosing and prioritising and managing actions to meet what’s valued in life?

To summarise: currently coping is measured using a “catalogue” of actions, often out of the context of daily decision-making and activity management. Activity management can vary from day to day, hour to hour, month to month. Being flexible with how we go about life seems, at least to me, to depend on my being aware of what’s important to me, what my energy is like, and the context in which I life. How well do we measure these constructs in pain management?

Cane, D., Nielson, W. R., & Mazmanian, D. (2018). Patterns of pain-related activity: replicability, treatment-related changes, and relationship to functioning. Pain, 159(12), 2522-2529.

Folkman, S., & Lazarus, R. S. (1980). An Analysis of Coping in a Middle-Aged Community Sample. Journal of Health and Social Behavior, 21(3), 219-239. doi:10.2307/2136617

Jensen, M. P., Turner, J. A., Romano, J. M., & Karoly, P. (1991). Coping with chronic pain: A critical review of the literature. Pain, 47(3), 249-283. doi:http://dx.doi.org/10.1016/0304-3959%2891%2990216-K

Kato, T. (2012). Development of the Coping Flexibility Scale: Evidence for the coping flexibility hypothesis. Journal of counseling psychology, 59(2), 262-273.

Riddle, D.L &  Jensen, M.P. (2013). Construct and criterion-based validity of brief pain coping scales in persons with chronic knee osteoarthritis pain. Pain Medicine 14(2):265-275. doi:10.1111/pmc.12007

Rosenstiel, A. K., & Keefe, F. J. (1983). The use of coping strategies in chronic low back pain patients: relationship to patient characteristics and current adjustment. Pain, 17(1), 33-44.

Schmitz, U., Saile, H., & Nilges, P. (1996). Coping with chronic pain: flexible goal adjustment as an interactive buffer against pain-related distress. Pain, 67(1), 41-51.

Sleijser-Koehorst, M. L. S., Bijker, L., Cuijpers, p., Scholten-Peeters, G. G. M., & Coppieters, M. Preferred self-administered questionnaires to assess fear of movement, coping, self-efficacy and catastrophizing in patients with musculoskeletal pain – A modified Delphi study. Pain. in press

Snow-Turek, A. L., Norris, M. P., & Tan, G. (1996). Active and passive coping strategies in chronic pain patients. Pain, 64(3), 455-462. doi:10.1016/0304-3959(95)00190-5