social

Five things I learned about pain this year


  1. Our definitions of pain matter more to researchers and people who like to philosophise about pain than to people experiencing pain. At the same time, definitions do matter because when the IASP definition of pain was first established, the distinction between the neurobiological underpinnings of pain – and the experience – was clear. And this matters because neurobiology is only part of the picture. (Chekka & Benzon, 2018; Cohen, Quintner & van Rysewyk, 2018; Reuter, Sienhold & Sytsma, 2018; Tesarz & Eich, 2017; Williams & Craig, 2016)
  2. The idea of “tribes” in pain and pain management is a misinterpretation of our need to work together as clinicians because pain is complex. The old argument that we’ve omitted “the bio” because we use a biopsychosocial framework for understanding pain is, frankly, ignorant. It’s also destructive because we need one another when we try to help people who are seeking our help. And even if someone has a straightforward sprain, fracture, or whatever – that sprain is happening to a living, breathing, thinking, emoting, motivated person. If we are to break down the silo thinking in pain management, we also need to learn how to work together within an interprofessional team. This means learning to speak a common language. This also means including the person with the pain as part of the team. To think that we can ignore the person and focus only on “the tissues” means we also must agree that our contribution as health professionals could be replaced by an algorithm (Gordon, Watt-Watson & Hogans, 2018; Lötsch & Ultsch, 2018; Shluzas & Pickham, 2018 .
  3. The gap between what is investigated in research institutions and both the concerns of clinicians and patients, and implementing research findings is enormous. Accusing researchers of ‘living in ivory towers’ fails to recognise that most of our active pain researchers in rehabilitation still continue in clinical practice. The gap seems to be between funding agencies (valuing high tech, high impact research) and the concerns of clinicians (often about high value, low tech, and low cost research). There are very active discussions about “how do I use this study” on social media across the board – Twitter, Facebook, LinkedIn, blogging – and these represent possibly the most important vehicles for clinicians, policy-developers, researchers and people living with pain to break down silo thinking and begin to address the factors that contribute to the knowledge translation gap. Many discussions on Exploring Pain: Research and Meaning (Facebook group) end with acknowledgement that funding systems simply do not support collaborative evidence based teamwork (Arumugam, MacDermid, Walton & Grewal, 2018; Bérubé, Poitras, Bastien, Laliberté, Lacharité & Gross, 2018; Chen, Tsoy, Upadhye & Chan, 2018; Romney, Salbach, Parrott & Deutsch, 2018; Tougas, Chambers, Corkum, Robillard, Gruzd, Howard,… & Hundert et al., 2018).
  4. The social part of pain is receiving increased research and clinical attention – and it’s a messy area of study. Social isn’t well-defined – it can mean social psychology, sociology, culture, health systems, media, feminism, political science, legislation – anything where people interact. Social psychology studies investigate things like trustworthiness, gender effects in interactions, stigma (Naushad, Dunn, Muñoz & Leykin, 2018; Sherman, Walker, Saunders, Shortreed, Parchman, Hansen, … & Von Korff, 2018; Wesolowicz, Clark, Boissoneault & Robinson, 2018), while sociology examines diagnoses and power relationships in healthcare – things like being “too young” for a diagnosis of arthritis (Kirkpatrick, Locock, Farre, Ryan, Salisbury & McDonagh, 2018) or validating the pain of menstruation (Wright, 2018) or a diagnosis of fibromyalgia (Mengshoel, Sim, Ahlsen & Madden, 2018). It seems no accident that many of the pain problems needing “validation” occur more often in women, and fail to have “objective” signs. But social means more than labeling and interacting, it’s also about community values and ideas – and how pain is portrayed by people experiencing pain, and in the media (Kugelmann, Watson & Frisby, 2018). The way WE talk about pain, and how we talk about people living with pain. How people living with pain are portrayed and how they portray themselves (ourselves). I suspect the social aspects of our experience with pain are amongst the most complex and most potent in determining suffering (loss of sense of “who am I?”) and disability (“what can I still do?”).
  5. Finally, I am encouraged by the wealth of information being shared freely, discussed passionately, and applied in many different forms around the world. I am proud to have been associated with many different groups as we – you, me, people living with pain, us – keep this topic alive and up-front. While I am no great productive scholar, I publish few peer-reviewed articles, and in the eyes of University hierarchy I am insignificant, I believe the conversations had on social media and into the real world have an impact on how we work in the clinic. If we can achieve the things we talk about, even if we achieve only a fraction of those things, we will have helped more people than we can ever imagine. I feel so privileged to have got to know some of the greatest “lived experience” advocates for greater ‘patient’ involvement in our conversations about pain. Isn’t it time we remembered the old adage “nothing about us without us”? Social media allows us to break the code of silence – and the distinction between “us” and “them” in the world of pain. After all, many of “us” are also living well with persistent pain.


Arumugam, V., MacDermid, J. C., Walton, D., & Grewal, R. (2018). Attitudes, knowledge and behaviors related to evidence-based practice in health professionals involved in pain management. International journal of evidence-based healthcare, 16(2), 107-118.

Bérubé, M. È., Poitras, S., Bastien, M., Laliberté, L. A., Lacharité, A., & Gross, D. P. (2018). Strategies to translate knowledge related to common musculoskeletal conditions into physiotherapy practice: a systematic review. Physiotherapy, 104(1), 1-8.

Chen, E., Tsoy, D., Upadhye, S., & Chan, T. M. (2018). The Acute Care of Chronic Pain Study: Perceptions of Acute Care Providers on Chronic Pain, a Social Media-based Investigation. Cureus, 10(3).

Chekka, K., & Benzon, H. T. (2018). Taxonomy: definition of pain terms and chronic pain syndromes. In Essentials of Pain Medicine (Fourth Edition) (pp. 21-24).

Cohen, M., Quintner, J., & van Rysewyk, S. (2018). Reconsidering the International Association for the Study of Pain definition of pain. Pain reports, 3(2).

Gordon, D. B., Watt-Watson, J., & Hogans, B. B. (2018). Interprofessional pain education—with, from, and about competent, collaborative practice teams to transform pain care. Pain Reports, 3(3).

Kirkpatrick, S., Locock, L., Farre, A., Ryan, S., Salisbury, H., & McDonagh, J. E. (2018). Untimely illness: When diagnosis does not match age‐related expectations. Health Expectations.

Kugelmann, R., Watson, K., Frisby, G (2018). Social representations of chronic pain in newspapers, online media, and film. Pain, in press.

Lötsch, J., & Ultsch, A. (2018). Machine learning in pain research. Pain, 159(4), 623.

Mengshoel, A. M., Sim, J., Ahlsen, B., & Madden, S. (2018). Diagnostic experience of patients with fibromyalgia–A meta-ethnography. Chronic illness, 14(3), 194-211.

Naushad, N., Dunn, L. B., Muñoz, R. F., & Leykin, Y. (2018). Depression increases subjective stigma of chronic pain. Journal of affective disorders, 229, 456-462.

Reuter, K., Sienhold, M., & Sytsma, J. (2018). Putting pain in its proper place. Analysis.

Romney, W., Salbach, N., Parrott, J. S., & Deutsch, J. E. (2018). A knowledge translation intervention designed using audit and feedback and the Theoretical Domains Framework for physical therapists working in inpatient rehabilitation: A case report. Physiotherapy theory and practice, 1-17.

Sherman, K. J., Walker, R. L., Saunders, K., Shortreed, S. M., Parchman, M., Hansen, R. N., … & Von Korff, M. (2018). Doctor-patient trust among chronic pain patients on chronic opioid therapy after opioid risk reduction initiatives: A Survey. The Journal of the American Board of Family Medicine, 31(4), 578-587.

Shluzas, L. A., & Pickham, D. (2018). Human Technology Teamwork: Enhancing the Communication of Pain Between Patients and Providers. In Design Thinking Research (pp. 313-325). Springer, Cham.

Tesarz, J., & Eich, W. (2017). A conceptual framework for “updating the definition of pain”. Pain, 158(6), 1177-1178.

Tougas, M. E., Chambers, C. T., Corkum, P., Robillard, J. M., Gruzd, A., Howard, V., … & Hundert, A. S. (2018). Social Media Content About Children’s Pain and Sleep: Content and Network Analysis. JMIR Pediatrics and Parenting, 1(2), e11193.

Wesolowicz, D. M., Clark, J. F., Boissoneault, J., & Robinson, M. E. (2018). The roles of gender and profession on gender role expectations of pain in health care professionals. Journal of Pain Research, 11, 1121.

Williams, A. C. D. C., & Craig, K. D. (2016). Updating the definition of pain. Pain, 157(11), 2420-2423.

Wright, K. O. (2018). “You have Endometriosis”: Making Menstruation-Related Pain Legitimate in a Biomedical World. Health communication, 1-4.

Context and sociocultural factors


I posted yesterday about how little social and cultural factors seem to be included in assessing and managing pain, and I had hoped to find some papers to discuss today. Events conspired and I have failed in that endeavour, so this post is, unusually for me, almost entirely my opinion.

So, sticking my neck out, why do I think the sociocultural context needs to be included when someone presents with their pain problem?

Well, the first thing that springs to mind is how has that person has found their way to a treatment facility – how did they get referred and by whom? To present for treatment means that at some point, this person has decided the pain they are experiencing is undesirable, and something needs to be done about it (whether that ‘something’ is diagnosis, elimination or confirmation of its impact). This decision to seek help seems to be based largely on whether it’s ‘normal’ or ‘expected’ in the culture in which the person lives.

Let me give you an example: and yes, it’s perhaps a little outrageous, and yes, it does relate to acute pain!
In one group in New Zealand society, body piercing and suspension is one way to generate a ‘natural high’. The individual and his or her supporters (usually members of the same social group) congregate and encourage each other through the process of suspending the body from large hooks inserted through the skin of the back. As the process continues, some of the participants begin to swing their bodies from the hooks, and I’ve watched one participant swing and run across a stage to gain more momentum. Although the physical trauma is clear and pain is experienced as the hooks are initially inserted, over the 10 – 20 minutes of the process, these individuals start to feel euphoric and describe the feeling as ‘bringing me closer to a spiritual plane’, ‘overcoming my physical self’, ‘getting in touch with the inner self’.

The practice of body piercing is ancient, and an accepted part of many cultures including Sri Lanka where it forms a part of a ritual to the Hindu god Murugan, and the Phillipines where ritual re-enactments of the crucifixion, complete with nails piercing the hands are performed on Good Friday. Tattooing is also an accepted part of many cultures including New Zealand Maori and the Pacific Islands.

For many of us, the thought of submitting to painful procedures as a recreational activity is just not something we would ever do. However, we may participate in weekend sports – netball, rugby, skiing, running, weight-training…and sustain pain with the ‘support’ of our friends!

So it’s not surprising that if our willingness to experience acute pain can be influenced by social and cultural factors, treatment seeking for persistent pain can also be influenced.

Two common pain problems come to mind: the headache and the backache. Headaches are usually managed with simple analgesia and a quiet night or a walk. Backaches – well for many of us (around half of those that have an episode of back pain in a year (Walker, Muller & Grant, 2004) we will seek health care from a GP or chiropracter or similar. If we don’t initially attend, our families and friends or employers will suggest we do if our function is affected. Who we see will be influenced by our culture – in New Zealand, it’ll be a GP or physiotherapist or chiropracter; in rural China, it will more likely be a practitioner of traditional chinese medicine, or an acupuncturist.

The impact of even our acute pain on our lives will depend on our social context – our work, whether we live alone, the responsibilities for household tasks or caring for family members. And most especially, our pain behaviours will be influenced by others around us – our nearest and dearest strongly shape the kinds of things we do when we are sore (e.g. Smith, Keefe, Caldwell, Romano & Baucom, 2004).

And these are the things that we may well miss assessing if we don’t meet the person’s family (how many people attend a pain assessment alone, without any family present?), or talk to their colleagues. What’s more, we don’t typically include these people in management either – despite our knowledge that people changing behaviour really need to have the support of those who see them every day, especially in the period immediately after a pain management programme. In New Zealand anyway, ACC claimants receiving compensation for an accident rarely have encouragement or funding to enable their family members to also be included in intervention – even when roles have changed significantly, or the relationship is under strain. The ‘claimant’ is the person with the problem – even when we know that people live within a family, community, social, sporting, church system.

Tomorrow I hope to post on some of the factors to assess when considering the sociocultural and contextual factors in a person’s pain experience. If you’ve enjoyed this post, and want to read more – don’t forget you can subscribe using the RSS feed button at the top of the page, or you can simply bookmark the blog. And I love comments and respond – even if you don’t like what I have to say!

Smith, S. J. A., Keefe, F. J., Caldwell, D. S., Romano, J., & Baucom, D. (2004). Gender differences in patient-spouse interactions: A sequential analysis of behavioral interactions in patients having osteoarthritic knee pain. Pain, 112(1-2), 183-187.

Walker, B. F., Muller, R., & Grant, W. D. (2004). Low back pain in Australian adults. health provider utilization and care seeking. Journal of Manipulative & Physiological Therapeutics, 27(5), 327-335.

It’s not rocket science – it’s respecting the individual


ResearchBlogging.org

Using cognitive behavioral therapies in pain management isn’t really rocket science, it’s simply being aware of the principles of learning from both a cognitive (thinking) point of view and a behavioural point of view. It is, however, complex – by that I mean, there are many threads to systematically follow and actively manage.

There does need to be a fairly large emphasis on assessing or understanding (or formulating, if you prefer psychological language) the factors that are working together to influence the person’s presentation. A formulation is simply a set of premises or hypotheses that, if they are tested and found to hold true, help to explain why this person is presenting the way they are, and to predict how they might respond in certain situations.

In chronic pain management, this means incorporating biophysical or biomedical elements, along with psychological and social elements. The complex blending of all these factors is what gives each individual a unique presentation and a unique set of concerns. And this is why it’s important never to think there is a ‘standard’ or routine way to help people with chronic pain develop ways to cope and move forward. ‘Cookie cutter’ or ‘recipe’ methods simply won’t work as effectively as an individualised approach.

My main concern currently is that the biomedical/biophysical and psychological aspects of assessment are fairly well covered in many settings – the aspect that is least well assessed and addressed is the social. ‘Social’ covers an area of influence that begins with interactions between the individual and his or her family, through to the influence of mass media and systems of governance and policy within a society. I think in New Zealand anyway, the psychological assessments are becoming over-emphasised, and the lack of emphasis on roles, function, interactions

Today let’s look at the words of people experiencing chronic pain – a great reading is Mandy Corbett, Nadine E. Foster, Bie Nio Ong’s paper ‘Living with low back pain—Stories of hope and despair’.

It incorporates the narratives of six people experiencing chronic pain, and themes that emerge include the fluctuating emotions of hope and despair. A number of linked themes emerged which influenced the extent to which people oscillate between hope and despair, the most salient of which were ‘uncertainty’, ‘impact on self’, ‘social context of living with pain’, and ‘worry and fear of the future’. It is clear from the narrative accounts that it is not only just physical pain that the back pain sufferer must endure, but also that the psychosocial implications pose an added and often complicated challenge.

‘They [others with back pain] go through what
I’ve been through. They’ve got to come through
it all: the stress, the anger, er…the feeling of
..er.. uselessness, and it can take a toll on a
marriage and a family so bad, to the point that,
that person may not have a family in 18 months,
four years’

‘You know, I can’t have one
day a week off. I’ve got to do full-time and I’m
finding it very hard and I’m frightened that I’m
going to do it because I have to, but then I end up
getting worse and I just can’t cope. What do I
do? Because that worries me. I can’t go off sick. I
can’t afford to go on half pay. So .. so that’s a
real dilemma.’

‘He positions himself as a social persona
who contributes both to his family and to the
community, and re-affirming himself in this way
forms the foundation for a generalised hope where
he can have faith in the future’

Can we spend a while listening to the social context of the people we work with? Considering both the impact and the influence of the wider social factors that abound when an individual experiences their personal pain.

More tomorrow on the social context of pain.

Corbett, M., et al. Living with low back pain—Stories of hope and despair. Social Science & Medicine (2007), doi:10.1016/j.socscimed.2007.06.008

April already!


It’s April and time for a change of season, sadly.  For us in the southern hemisphere it means we’re moving swiftly into autumn, with the leaves outside my house becoming yellow and fluttering to the ground, and the hint of chill in the air at night and early morning.  After a weekend away, it’s a bit hard to sit down and write!

And what a weekend it was – I had an absolutely wonderful time at PainLang in Brisbane.  A four-hour forum of discussion and dialogue between a couple of really wonderful people including Professor Harold Merskey, originator of the now internationally-adopted definition of ‘pain’, Professor Jenny Strong from Queensland University, Professor Roland Sussex also from Queensland University, and a range of other researchers and clinicians who all were able to contribute to a wide-ranging discussion about the language of pain.

For me, a highlight had to be hearing Professor Merksey talking about how the definition of pain was first adopted, and his ongoing work in the medicolegal field of defining pain and disability, and establishing that there is a widespread but probably false impression that musculoskeletal pain such as whiplash is short-lived.  Some of his research and particularly his re-analysis of several studies, demonstrated that due to inadequate outcome measures and methodological limitations, there is an impression that all but a small percentage of people completely recover within three months – but in fact, somewhat closer to the truth is that around 10% of people take longer than 12 months to completely recover.  What confounds the assessment of outcome is lack of a consistent measure, and indeed it’s common for measures of:

  • pain intensity
  • disability
  • return to work
  • case closure based on ‘end of rehabilitation’
  • cessation of compensation

all to be used at different times to establish an  ‘outcome’ that is then used to determine how long it takes to recover from a musculoskeletal injury.   This creates problems when respected organisations quote figures drawn from studies without rigorous methodology and use the results from these studies to dictate policy such as duration figures for rehabilitation, types of treatments funded, or to establish whether compensation will be continued.

Another person that I listened to and think of as a kindred spirit is Professor Roland Sussex.  He is a linguistics professor and he and Professor Jenny Strong are working together to review the very commonly-used and well-known McGill Pain Questionnaire.  This is the instrument that provides a list of words, and asked the person with pain to identify the words that apply to him/her.  It was developed in the mid-1970’s, and reflects both the language and the concepts of pain from that time and the culture of North American middle-class white professionals.  Why do I think of Prof Sussex as a kindred spirit? Well, he’s a magpie for bits and pieces of information which he gleefully collects and notes down, and pulls out in conversation which is erudite, ranges over an enormous range of topics, and is entertaining and thoughtful.  While I can’t profess to achieve the level of knowledge of Prof Sussex, I too have that tendency to collect and pick over a range of tidbits of information that seems to scatter around me – and lo! and behold, it comes out on this blog!!

So, what did he have to say?  Well, the poor McGill, which is an instrument I have never found useful and have rarely used, has some linguistic features that make it a product of its time, and one which needs some thoughtful consideration before deciding to use.  There are several words in the instrument that are rarely found in the conversations of the people I see in my clinical practice: lacinating (which according to a number of on-line dictionaries means characterized by a sensation of cutting, piercing, or stabbing), torturing, gruelling, searing – to name a few.  The instrument also categorises these words, but the categories are not necessarily mutually exclusive, and although each category apparently ranges from less severe to very severe, this isn’t particularly clear.

Some other concerns I’ve had with the McGill also came up – the cultural bias of an instrument developed in the US for english speakers means that people from other cultures are disadvantaged by it.  We simply don’t know whether it’s possible for someone who doesn’t speak english as a first language would think of these words when describing their pain.  There are some words that are very specific to pain (eg lancinating), while there are other words that are used far more generally for many other things (eg hot, cold, burning), and this makes it especially difficult for people from other cultures to translate.

I’m not sure whether the McGill was ever meant to be a substitute for simply talking about pain, but I’ve seen it used for a wide range of things in the pain literature – from ‘diagnosing’ pain sub-types (eg neuropathic pain), to measuring outcomes of treatment, to simply being part of a battery of tests to ‘understand’ someone’s pain.  There are always concerns when we try to understand another’s pain – we can never know the qualia of another’s pain (just as we can never know whether we each see the same ‘blue’, although we use the word about the same/similar wavelength of light).  Constraining someone to a tool like the McGill doesn’t seem especially helpful for me clinically, so I’ve preferred to talk and come to some sense of understanding, albeit filtered through my own language filters, and through the filters of the person I’m talking with.

Any assessment we use will be subject to certain other ‘cultural’ aspects of communication.  This is because in order to understand another’s pain, we rely on communication, and communication is social and cultural.  Communication involves at least two people, some shared communication conventions (folkways or mores), it relies on the ability of each participant  to have a message to communicate, a method to encode it, transmit it, for that message to be received, decoded and comprehended.  Lots of opportunity for error to creep in!

Think about some of the features that are present in any conversation about pain:

  • the person with pain needs to decide whether their pain is something they wish to communicate about
  • once they decided to communicate about it, they consider/process the aspect they wish to project – and we are quite selective about what we communicate.  For example, do we want to demonstrate stoicism? martyrdom? bravery? anxiety?
  • the actual process of determing what to communicate is filtered through often subconscious processes – how many of us from a Judeo-Christian background really think about the way our Judeo-Christian heritage conceptualises pain?  Of heroes, and saints suffering, and pain as punishment, and retribution and how it was visited on Job to ‘test’ him, and removed only with God’s will?
  • And what about our own family’s view on pain? Are we from a family where pain is discussed? or one where we were told to ‘put up or shut up’?  Was one parent very vocal about pain, and what impact does that have on us? Like the child of an alcoholic, who may ‘blame’ the parent for either abstinence or alcoholism, we too may be reacting to situations in our early life…
  • And culturally, we may be from a culture where certain pains are NEVER discussed (vulvodynia, painful periods), or we may be of an age or in a state such as pregnancy where every horror story of childbirth is discussed in intimate detail.
  • Our gender makes an impact on what we will discuss, with whom and in what detail…
  • Our power in a relationship as interrogator, subject or equal makes an impact on what is asked, by whom and when – and what is answered, by whom and when
  • and finally, once a decision is made to communicate about pain, it is moderated by the response of the other person in that conversation to either increase the frequency of ‘pain talk’ or decrease it.

I’ve talked before about the words that we use when talking about pain – the importance, to me at least, of the ‘social’ in ‘psychosocial’ assessment, for fear that the interaction between the person and his or her environment (both social and nonhuman environment) will become lost.  I’ve also talked about the language of ‘injury’ being used in some circumstances, but not in others (the head’ache’ is different from the back ‘injury’???).

So, a fruitful weekend, one that I will recall very fondly indeed – a toast to Jenny and colleagues for organising such a rich and enjoyable feast for me and the others who attended!