There are two of us in this…

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Cano, Annmarie, Miller, Lisa Renee, & Loree, Amy. (2009). Spouse beliefs about partner chronic pain. The Journal of Pain, 10(5), 486-492. doi:

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

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

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

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

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

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

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

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

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

Sessa, Paola, & Meconi, Federica. (2015). Perceived trustworthiness shapes neural empathic responses toward others’ pain. Neuropsychologia, 79, 97-105. doi:

Expectations – and communicating

There are times when I look at the research on persistent pain and treatment, and I begin to wonder why I’m still so positive about this field! After all, it seems that although a biopsychosocial or multidimensional framework for pain has been around since the 1970’s, I’m still encountering reasonably recently-graduated clinicians who sincerely believe that whatever treatment they’ve learned is the Bee’s Knees, and Will Truly Fix All Pain. And people who firmly believe that All Pain Is X. Or Y. Or Z. And surely we should do what they say (pay the fee, get the certificate, perhaps even levels 3, 4 and 5!) and the people we see will get completely cured.

Maybe I’m just being a Grinch because it’s coming into Christmas.

Perhaps, too, we’ve all forgotten that treatments for persistent pain don’t happen in a vacuum. The people we work with have first had to recognise that their problem is something they think should be treated. Then they’ve chosen to see someone – and maybe chosen to see us, or been referred to us by someone else. These two steps in treatment response alone make an incredible difference to outcomes.

Imagine if I’m someone who thinks my lumbago is normal, something everyone gets, and don’t see it as something unusual. I might choose not to seek treatment until I’m about to embark on a long trip. I choose to see an osteopath because I think they’re more gentle than a physio (who will only give me exercises), or a chiropractor (who will hurt me!), and I don’t like needles so I avoid acupuncture. I don’t think my problem is serious enough to go see a medical practitioner and besides I think my GP will just send me to the physio.

Now imagine instead that I’m a young woman who loves to dance. I’ve had little niggles in my back before, but last night I got on the dance floor and partied like it’s 1999 (oh, that’s right, we’ve been there, done that!). Anyway I partied the night away until I slipped on some beer on the floor, landed on my butt and now my back is really bothering me. I head to my GP feeling pretty hung over and like I cannot walk because my back is SO sore.

Two reasonably common stories.

Now let’s take a look at a study looking at expectations from people seeking help for chronic pain (persistent pain). Wiering, de Boer, Krol , Wieberneit-Tolman and Delnoij (2018) examined the results of data collected from people with persistent pain. Over 2000 people took part in this study, mainly between the ages of 55 – 64. Most were women, most had been living with pain for a long time (on average 14.9 years). Most (50.7%) obtained treatment intended to reduce or stabilise (27%) their pain, and for many people the pain did stabilise (26%), or reduced to a degree (29.4% + 34% to a lesser degree). BUT, and here’s the thing: 41.8% expected a better result, while 33.3% got a better result than they thought they would.

The killer point is that although nearly 70% of people achieved or did better than they expected, and nearly 40% of patients didn’t expect very much, 30% of people were unsatisfied.

Curiously, there was little relationship between how the clinician communicated and the accuracy of the person’s expectations. It didn’t matter whether the clinicians used shared decision-making, patients felt their outcomes should be better than they were.

BUT importantly, attentive listening, having time available for the person, whether the patient trusted the clinician, and whether the patient thought the clinician had done all he or she could were important predictors of satisfaction.

What points do the authors make about communication and expectations? Well, one is that although communication is important only certain aspects of communication really rated with patients: clinicians thought “instrumental” communication was important. This is things like seeking information, asking questions of the person, asking for consent. Instead what actually helped was “affective” communication: responding to the person’s emotional subtext. Things like taking time to listen, building trust, giving people the idea that the clinician is doing all that he or she can.

There’s a caveat though, and I’ll quote directly “Low scores on the important communication aspects were related to expectations that were too high, while high scores were related to too low expectations. Apparently the perfect level of communication is somewhere in the middle. The relationship between low patient expectations and good affective communication may be a sign that it worries patients if health care providers show too much empathy and therefore come across as concerned.” (p. 6)

What can we do with this information? Well I think we can begin by recognising that helping people establish what’s important to them – what is the outcome they most value – is something often not tabled by us. We think we’re communicating clearly, but maybe not. We should also personalise treatments – help people realise that we’re not just delivering some sort of template or algorithm, but that we’re concerned about their unique needs, wants and lifestyles. We should also be warned that people seeking help from us have very high hopes that we’ll be able to achieve a lot. And of course, if we read the research, we should recognise that in general we don’t have a great track record in persistent pain. Let’s not over-promise!

I think using personalised outcome measures like the Patient Specific Functional Scale or the Canadian Occupational Performance Measure, or Goal Attainment Scaling could help us be more focused on what people want from their treatment. While pain reduction is the ideal – it’s not the only outcome! What point is there to have no pain if you’re still afraid to do things you want to do?

Wiering, B., de Boer, D., Krol, M., Wieberneit-Tolman, H., & Delnoij, D. (2018). Entertaining accurate treatment expectations while suffering from chronic pain: an exploration of treatment expectations and the relationship with patient- provider communication. BMC Health Serv Res, 18(1), 706. doi:10.1186/s12913-018-3497-8

Talking pain – seeking validation: Social interaction in pain

While we might laugh about the so-called typical ‘I will fix it’ response of some men when their partners talk about problems (when what the woman really wants is a hug), it seems that much of our research into pain behaviour, particularly verbal expressions of pain, has missed something. I’m not a major reader of relationship literature, but I do read a lot about pain behaviour, and something I’ve noticed is the almost exclusive orientation toward the operant conditioning model when it comes to expressing pain in a social setting.

In operant model of pain behaviour, these behaviours are enacted to communicate to others. Responses to those behaviours may reinforce or punish those behaviours – and there is a good deal of evidence to support this model. It seems to be supported by evolutionary theory in that pain behaviours elicit resources from others, and serve to obtain help. One focus of therapy traditionally is to reduce the number of pain behaviours, in order to reduce the identification of the individual with helplessness or the sick role.

Cano and Williams, in this paper, suggest an alternative view of particularly verbal utterances about pain in relationships – they suggest considering an interpersonal process model of intimacy.

In this model, the things we say that disclose emotional content serve to foster and strengthen intimacy if they are met with empathy and validation. Cano and Williams state: ‘verbal communications about one’s thoughts and feelings about pain, may entail attempts to disclose emotion, recruit emotional support, and build intimacy.’
They go on to say ‘An empathic and concerned response from the partner may also contribute to intimacy. Emotional validation, including empathic responses, enhances the emotion regulation process for both partners because such responses allow each person to process stressful or aversive stimuli.’

In other words, if the partner doesn’t respond empathically, this is usually interpreted to mean rejection and disregard for the partner and usually negatively affects emotion regulation, but when the partner does respond with empathy, the relationship is stronger and more intimate.

What might this mean in therapy?
Well, up until now, operant theory has supported the idea of reducing or minimising pain behaviour, including talking about pain or eliciting emotional or practical support from a partner. This process model suggests that some types of communication may serve to improve the relationship. Validation of emotional content by the partner has in one study correlated negatively with punishing spouse responses, while invalidation correlated positively with punishing spouse responses – and the emotional content (rather than the words) made the major difference between the two types of response (Cano, Barterian & Heller, 2008).

This suggests that a simple ‘let’s eliminate the negative’ may not benefit the relationship. Strong relationships enhance coping, and relationships are strengthened when what one spouse is seeking is matched by the other spouse.

Empathy, caring, concern, and closeness may be desired when a person with pain discloses emotion, not ‘‘expertise” or problem-solving, which could signal invalidation of emotion.

This may mean clinicians helping partners (and families) learn to communicate more effectively – and something that has become very apparent to me is how poorly we as humans can communicate about pain, especially when it comes to setting boundaries, asking for help, or seeking emotional support. It takes a good deal of skill to express what it is that we really want, and to clarify or restate what we want if initially we fail to get it.

Assertiveness has a bad rap very often – it can mean all sorts of strident and aggressive ways to ‘get the point across’, when in fact it is simply about being respectful of each other and oneself.  A good number of factors can get in the way of effective communication such as long-standing scripts ‘I should be able to cope alone’, ‘I must not disagree’, ‘I don’t have the right to ask’, as well as limited skills in regulating emotions when the message isn’t received in the way it was hoped.

At the very least, something we can do as clinicians is listen to the people we are working with, and while we don’t want to reinforce helplessness (which, by the way, we will do if we offer ‘solutions’ rather than simply acknowledging the situation), we can help people feel more comfortable with difficult emotions if we ourselves can be mindful and allow ourselves to ‘sit with’ those very emotions.  By modelling effective communication ourselves, we can help validate and strengthen our relationship with the person, while not necessarily attempting to ‘fix’ or ‘reduce’ the distress.  Then we can turn the conversation to things that are good, achieved and helping the person move on.

Some brief pointers as to how:

  • ask about what the person has been up to rather than how their pain is
  • if they say they’ve had a hard time, acknowledge this ‘It’s been a real challenge to get here’.  Then pause – and add ‘it’s really great to see you here, how did you manage it’ as a way to move on towards positive coping
  • when they foresee snags or problems, acknowledge that it’s not easy to do what we’re asking.  Then ask what they think is the ‘next best step’ towards doing what you’re currently working on.
  • respond to the emotional content by empathic reflection, rather than getting caught up in how to solve the practical problem – that’s probably not what the person is asking for, and even if it is, empathy can go a long way towards helping the person accept that you are there for them rather than to ‘fix’ them

The paper by Cano and Williams goes on to discuss appropriate research strategies that might help us understand more about interactions in couples.  It’s difficult for me to read this without adding ‘if you can get the couple to come in!’ because so often people seem to think that they ‘should’ cope with ongoing pain alone.  It would be great to see far more emphasis on people and their relationships and social context in the next ‘new wave’ of chronic pain management.

Cano, A., & Williams, A. (2010). Social interaction in pain: Reinforcing pain behaviors or building intimacy? Pain, 149 (1), 9-11 DOI: 10.1016/j.pain.2009.10.010

Cano A, Barterian JA, Heller JB. Empathic and nonempathic interaction in
chronic pain couples. Clin J Pain 2008:678–84

It’s not what you say, it’s the way that you say it?
I have a bit of a theme happening – health care interactions. I think it’s because this week I’ve been talking about this with patients, and it seems to be something that either raises the hackles or fills them with gratitude! Anyway, I was glad to find this paper the other day on ‘perceived quality of doctor–patient interaction in rehabilitation’. This is slightly different from the usual focus, which is often on interactions in primary care.

It’s an interesting paper written by a group of researchers in Germany. They describe the use of a newly-developed rating instrument, the ‘P.A.Int-Questionnaire’, which stands for (in German) ‘Patient-Arzt-Interaktion’. I’m guessing that’s German for ‘patient-doctor interaction’ (correct me if I’m wrong!). By using this, they aimed to examine the relationship between perceived quality of interaction and long-term treatment outcomes.

The quality of interactions between patients and clinicians were rated on three dimensions – affective behaviour (ie warmth, empathy, ‘coherence’); instrumental behaviour (ie information exchange, structuring and reinforcement); and participation and involvement of patients.

I’ll just briefly describe the methodology, before cutting to the findings and then going onto how this might influence practice in chronic pain management.

Two different questionnaires were developed – tapping into the same domains, but one for patients and one for clinicians.
Seven rehabilitation clinics were involved in the study, with 61 doctors and their 470 patients reviewing their interactions with each other on admission, discharge and ward round. Patients also rated their health status on admission, discharge and six months later.

The key study questions were

  1. whether there were similarities between the patient rating of the experience, as compared with the clinicians rating;
  2. what the relationship was between the perceived quality of the interactions and long-term patient outcomes;
  3. whether there were any differences between those perceiving good interactions and those who perceived interactions as poor; and
  4. whether depression, anxiety or pain intensity influenced those ratings or outcomes.

The findings?

  • Patients and clinicians both rated affective behaviour in  interactions in a similar way, and quite positively.  So people were happy with the warmth demonstrated in the consultations.
  • Instrumental behaviour (information and structuring) wasn’t viewed as positively by patients as it was by clinicians – it seems that clinicians believe they are better at information exchange and guiding an interaction than what the patients experience is.
  • Patients who were happy with the interactions they had on admission were more likely to respond well to treatment in terms of pain reduction, as well as to anxiety when they were discharged – and this was maintained even to six months after discharge.

The final conclusions from the authors of this study relate to both the questionnaire itself and the findings about quality of interactions and treatment outcomes.

Firstly they indicate that the questionnaire has adequate internal consistency and is  sensitive to different situations and subjects (with recognition that the instrument needs further work in terms of factor structure and validity/reliability).

Secondly, they identify that improvements with respect to pain intensity and pain frequency at discharge and six months after discharge were stronger and more sustainable in the patient group reporting high quality of interaction with their clinician.  Again, the authors point out thatthat there are some limitations with respect to interpreting these findings:

Patients rating their interactions as high quality also reported higher pain intensity at admission. This could mean their pain scores ‘regressed to the mean’ (ie, reduced from an artificially high level to a more ‘usual’ level simply as a measurement artifact), or that these patients obtained better interactions from clinicians because they had higher pain intensity. Another drawback to the study is the 40% of patients who were unavailable for the 6 month followup measure.
A further point the authors make is that although pain, anxiety and mood improved, functional measures did not change (good point!). I note also that information about demographics and type of patient (chronicity of problem, previous health status and so on) wasn’t available, so we can’t determine whether there were differences between clinics.

What can we make of these findings?
It seems that these clinicians were really nice people – they conveyed warmth and empathy, and their patients liked this. They didn’t, however, do so well in terms of information exchange, guiding the discussion, or ‘making it work’ (actions). This might mean that although these clinicians were nice people they maybe hadn’t developed the specific skills involved in structuring a patient interaction.

While the clinicians involved in this study were physicians, I wonder whether occupational therapists, physiotherapists, nurses or even social workers could also be relatively under-skilled in the specifics of instrumental behaviour. I’m hoping that psychologists have some skill in this area – but I’m not entirely sure.

What was interesting for several reasons was the specific finding that people who rated the interactions very positively experienced better outcomes even in the long-term.
Now I don’t want to over-interpret this finding, but it does make me wonder whether this study is tapping into one aspect of the so-called placebo effect, or ‘meaning response’. After all, one of the main differences between ‘alternative’ health care providers and those of us working in, for example, a public health system, is the time available for a consultation. At the very least, the longer time available means more opportunity to demonstrate caring and empathy, and for information exchange.

At the same time, ‘alternative’ therapists positively engage with their patients to involve them in their (sometimes) complex treatment regimes (ever tried homeopathic treatments? you often have to stop using peppermint toothpaste, eating peppermints, stop drinking tea, coffee, chocolate…and I don’t even WANT to think about colonic treatments!). Of course, we’re not given the number of patients who drop out from ‘alternative’ treatments either, so I guess I’m not comparing apples with apples here!

I think I’ll go about reviewing my interactions in terms of these three dimensions for a while – and then see what I need to learn to improve my communication with patients.

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Susanne Dibbelt,, Monika Schaidhammer, Christian Fleischer, Bernhard Greitemann (2009). Patient–doctor interaction in rehabilitation: The relationship between perceived interaction quality and long-term treatment results Patient Education and Counseling : 10.1016/j.pec.2009.07.031

Health literacy: if you can’t read it, you don’t get it

For a long time I’ve been a fan of ‘plainspeak’ or eliminating gobbledegook.  I know my writing is often quite complex, but I try to write as if I’m talking directly to someone – and yes, I do use all those complicated words in real life!

But after working in pain management for a while certain themes keep coming up, and one of them is the large number of people who don’t read and write well.  I value the concept of multiple intelligences, and some people are simply ‘practical’ and hands-on, and don’t like books much – but to actually not be able to read and write well enough to understand common labels and warnings and instructions, that is an incredible handicap.

I have just been reading a paper by Don Nutbeam called ‘The evolving concept of health literacy’ in which he discusses the concept of poor health literacy as a risk factor for poor health status, and conversely, the idea that by improving health literacy it can become an asset to enable people to take control over their health and the factors that shape their health.

Poor health literacy is associated with lower socioeconomic status, reduced use of health resources and information, poorer adherence to treatments and higher drop-out rates.  It’s easy to see why both direct and indirect effects of not being able to make sense of written information might have an effect on health.

Nutbeam’s paper makes the point that decisions about health are made in a context, part of which is the ability of the individual to make their way through the health care system.  This system inevitably involves negotiating paperwork, being aware of pre-requisites for care, being able to clearly state what is needed – and to the right person. More than that, it’s being able to retain the complex information that a health care decision is based on, and maintain that working knowledge to understand why certain actions need to be taken at certain times.  It’s clearly not just about an individual being able to read – its about an interaction between health care systems and individuals, and it includes, according to Nutbeam, three critical points at which literacy directly influences health – access (who do I see? where do I go?), the interaction between the person and the provider (how does the provider ensure the person understands and retains the information?) and self-care (how does the person continue to take best care without directly drawing on the ‘system’).

The alternative view of health literacy as an asset suggests that by improving literacy, it becomes integral to empowering the person to carry out self care – and to receive appropriately tailored information so they can engage in activities that increase wellbeing.

That’s a big ask for a health care system that often does view health as ‘the absense of disease’.

What can you and I do?  Check with our patients whether they can read the information we provide – write simply in bullet point, avoid jargon, make sure patients have time to absorb information before making a decision, and in the end – listening, listening, listening.

D NUTBEAM (2008). The evolving concept of health literacy☆ Social Science & Medicine DOI: 10.1016/j.socscimed.2008.09.050

Who really has all the pieces of the puzzle?

I’ve worked in pain management for quite a while now, and longer in work rehabilitation, and seen the process from almost all sides.  For ages I thought that, as the health provider working with the person in the workplace itself, I had most of the pieces of the return to work puzzle.  I mean, I did have access to the medical information, progress reports from other health providers, I spoke with and met with the employer, the compensation agent or funder, and worked with the person…but I’ve revised my ideas since my own rehabilitation.

I’ve realised that the only person who has all the pieces of the puzzle is the person who is returning to work. This person is the only one who has been at every health care meeting, treatment session, and progress report.  This person is also the only one who has met with the employer, been a the at-work rehabilitation meetings, and been in ongoing contact with the compensation agent or funder.

I think the importance of this fact may not be made clear to the person very often – it certainly wasn’t made clear to me during my rehabilitation. Although I should have known, I didn’t – even with all my experience! (more…)

Words, words, words

What’s in a name? A rose is a rose is a rose by any other name…but those thorns still hurt.

Sticks and stones may break my bones, but words will never harm me… except at night when I’m lying awake and worrying…

Red Rose

Well as we all know, words do hurt, and often unwittingly especially in the area of pain management.

As health professionals, we use specialised language that sometimes can be misinterpreted by the people we are trying to help – a good example is the term ‘disc prolapse‘. To many people this means ‘disc collapse‘ which means ‘there is nothing between my vertebrae, I have bone rubbing on bone…’ Or disc degeneration, meaning a similar thing instead of merely being grey hair of the back!

While we use words to mean specific things, so do the people experiencing pain – but who knows whether we are in fact speaking the same language? It’s impossible to REALLY tell whether someone’s experience of ‘sharp’ pain is the same as the ‘sharp’ pain that we feel — just the same as we can’t tell whether the colour blue WE see is the same as the colour blue YOU see.

Coincidentally today I was thinking about the difference between calling an assessment a ‘psychosocial’ assessment, and calling an assessment a ‘psychological’ assessment. Even apart from the professional boundary issues, the concept of a psychosocial assessment, to me refers to ‘the interaction between the person and their social environment, and the influences on their behaviour’

A psychological assessment which implies assessment of psychological processes. The process of psychological assessment involves ‘a process that involves the integration of information from multiple sources, such as psychological tests, and other information such as personal and medical history, description of current symptoms and problems by either self or others, and collateral information (interviews with other persons about the person being assessed).’

I see the definition above as being pathology- or diagnosis-focused, looking at the individual and the problems they have. Now I know this isn’t necessarily always so – but by definition, a psychosocial assessment, to me, means using a similar process of collecting information from a variety of sources – but not only about the individual’s experience, but also those factors that could be contributing to disability, and especially social or community interactions that may be contextual to the individual’s presentation. A psychological assessment doesn’t have this flavour.

And of course, a critical component is that a lot of health professionals are skilled, competent and capable of carrying out a psychosocial assessment, while a psychological assessment is carried out by a psychologist.

In pain management, understanding the individual’s experience of pain, and then developing possible explanations for the interaction between various factors – both initiating the experience, and then maintaining the experience (particularly when disability or functional restriction is the key feature) – is critical to developing an individualised plan to help the person manage. This means including contextual factors like the employment situation, family roles, cultural factors, and needs to incorporate resources as well as deficits.

In the end, assessing the pain experience of the individual will require some level of mutual communication – without it, YOU will never know MY experience. This means some sort of language be it verbal or nonverbal will need to be transmitted. And we will need to include not just information from one or two domains, but from many, and from multiple sources including the social context, or we risk missing really important aspects of the individual’s experience that will impact on his or her disability.

So, in preparing this blog I did a wee search on lo! and behold! someone I really respect in the pain field, Professor Jenny Strong, Occupational therapy background, is chairing Pain Lang in Brisbane on Friday, March 28 2008, 12 – 5pm. This is a forum that aims to:

  • to present an overview of the current state of play in research on pain language
  • to investigate specific topics in pain language, especially in relation to the McGill Pain Questionnaire
  • to explore current studies at the cutting edge of pain language research
  • to explore social suffering associated with chronic pain, especially in the relation between the language of pain and other pain indicators and symptoms
  • to explore avenues for future research, both on pain language itself, and in its relation to non-language issues in pain diagnosis, treatment and management

Judging by the quality of the speakers listed (Professor Harold MERSKEY, Professor Roland Sussex (The Linguistic Perspective on the Language of Pain: Meaning, Metaphor and Discourse), PhD Candidate Amanda Neilsen (Social Suffering Experienced by People with Chronic Pain)), this is going to be a GREAT forum, with plenty to learn – and an opportunity to mix and mingle.

BTW I am NOT getting any commission on people who attend as a result of this post! I just think it’s a great opportunity to learn, and it’s really relevant to what I’m looking at in this post.
All the best to the organisers and speakers – it sounds like a great forum.

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Clear communication – an activity to encourage active listening

People who experience pain can have trouble saying what they want to happen – and difficulty hearing what other people really have to say. OK, I agree it’s a problem for us all – but

  • pain interferes with the capacity to attend to and process information, and
  • people with pain are often engaged in systems such as compensation or the health system
  • and communicating with their families (who are often also under strain)

so it’s good to help people learn to hear what is being said, and to be able to respond honestly and ‘assertively’.

Assertiveness is, however, a loaded word. I asked the group participants today what they immediately thought of when they heard the word ‘assertiveness’ and they said being bossy, dominant, pushy – and one person said it reminded her of hairy armpits!

So here are two activities that can be helpful so people develop skills for hearing and communicating.

The one minute silence

Pair off, sitting opposite each other.

If appropriate, hold the hands of the person and look into his/her eyes (this is best carried out with people in an intimate relationship – otherwise, simply looking into each others eyes is fine).

For one minute, one of the dyad can talk about anything he or she wants to. The other partner must listen without saying anything. After one minute, swap roles.

The paraphrase

As above (and following on from the above activity). The first person in the dyad talks for one minute about an issue that has been bothering them, while the second listens. After one minute, the person listening says ‘So you mean…’ and paraphrases the key issue. The first person can say ‘that’s it!’, ‘no, you haven’t got it’, or ‘nearly’, but gives no further information. The listener must continue with paraphrasing until the first person says ‘that’s it!’.

Then the pair swap roles.


  1. What was it like to be listened to? (first interaction)
  2. What was it like to really listen?
  3. What was it like when the person was trying to interpret/paraphrase what you said?
  4. What was it like to paraphrase what the person was trying to say?

I often then follow with the ‘DESC’ process to help with two things – (1) identifying what the ‘real’ issue is in a conflict (describing) and being clear about the emotional impact of that behaviour (expressing); and (2) then stating what exactly the person would like to have happen.

For those of you who haven’t encountered this process it’s as follows:

D= Describe the situation, being specific about one situation or event. e.g. ‘when I asked you about getting a dog, you walked out of the room’

E= Express your emotional response, keeping to ‘I’ messages. e.g. ‘I felt ignored and ‘cut off’.

S= State what you would like the other person to do, being specific about their action (but not about the outcome you want). e.g. ‘Could we meet to talk for 20 minutes this evening about the dog?’ (eg not presuming that the person will agree with your request to get a dog!)

C= Consequences – stating what consequences will be either for you or the other person. e.g. ‘And that way I can feel that we’ve been able to clear the air’ or ‘And that way I won’t keep on asking to talk about it again’.

This article by the London Pain Consultants outlines the rationale for effective communication, while this article discusses very briefly the place of assertiveness in developing confidence for self management.

For me, self management implies that the people we work with will be actively engaged in stating what they want to have happen with regard to their lives and health, and as a result they will be changing their behaviour, and doing things differently. This necessitates communicating these changes to other people, and doing this openly and honestly.

I find I carry out quite a lot of cognitive restructuring and challenging during sessions on communication skills – because it does seem that people are unwilling to ask others to do things differently, or to put up with them doing things differently, if they have not entirely convinced themselves of the benefits.

As a result, sessions on communication can often be quite intense CBT sessions – talking alone doesn’t do the trick, it must be accompanied by role play or practice!

I’m keen to hear what you think about communication, and whether (and how) you incorporate this into your pain management.  Drop me a line and let me know! And if you’ve enjoyed this post, don’t forget you can subscribe using RSS feed, and can bookmark my blog and visit regularly.  I’m posting roughly every day/every other day, so there’s plenty to read!