Ways to avoid “othering”

After my last post on “othering” I thought I should write something about what we know reduces the distancing that othering produces. To refresh your memory, othering is what happens when we identify positive characteristics about ourselves and simultaneously identify the absence of these positives in another person. Othering is a common part of any interaction but it seems to become less helpful as views become more polarised.

Lehti, Fjellman-Wiklund, Stalnacke and colleagues (2016) describe “walking down ‘Via Dolorosa'” as the “way of pain and suffering… from primary healthcare to [a] specialty rehabilitation clinic.” This depiction also captured the way gender and sociocultural context influenced that journey: chronic pain is a ‘low status’ illness (especially compared with high status diseases like cancer, heart disease, orthopaedic problems), while those patients with higher education and similarities to treating clinicians were viewed as “easier to interact with”. This study provides an insight into the norms expected as part of “being a proper patient – ready for change”.

Norms are a part of culture, assumptions about what “is done” in a particular context. Just as health professionals learn to “be professionals”, people seeking help for their health are also expected to behave in certain ways. Othering is, as I’ve indicated above, a normal or common part of interactions – some authors suggest we need an “other” in order to for our self to “know itself and define its boundaries” (Krumer-Nevo, 2012). At the same time, once the “other” is identified in less positive terms than “self”, it’s far easier to distance oneself from the other person.

One step towards reducing the distancing between “us” as health professionals and “them” seeking help is to create moments of “belongingness”. What this means is using overt means to help people feel welcome. In New Zealand, this may mean ensuring signs are written in both Maori and English. For people with pain, it may mean explicitly indicating to people with pain that it’s OK to stand up and move around during an initial assessment.

Another way is to raise the idea of the person living with pain as an expert. “Expert?” I hear you say…Yes, expert in “what it is like to be this person living with this pain in this context”. For us to demonstrate our understanding that the person living with pain is the expert on his or her experience, we need to provide safe and welcoming opportunities for the person to tell us what it is like. Narrative medicine, if you like.

Tonini and Chesi (2018) used Charon and Remen’s definition of narrative medicine “a way of dealing with the disease through narration, aimed at understanding the complexity of the patient that will no longer be seen as a set of objective data but as a unique individual with needs” in a study of the stories given by people living with migraine. The stories were of people with a chaotic narrative where migraine was a mystery, full of disorientation and few solutions, moving through to restitution where knowledge and efffective treatment allowed the person to progress. Other narratives were “stable” leading to improvement in understanding and management, and regression, where people gave up and remained disoriented.

How might this help us reduce our sense of “othering”? In one way, learning to hear what people have to say should be fairly simple for health professionals. We’re trained to listen carefully. But what we’re often focusing on is some sort of diagnosis: “what is going on here, what’s going wrong, what’s the pathology?” Hearing another’s narrative is a different process: this involves empathising with, understanding the journey from feeling unwell to seeking help, beginning to acknowledge the similarities between this person and ourselves. How might we respond to illness if we were faced with the same circumstances? the same prior history? the same choices?

Lajos Brons, philosopher (Brons, 2015), argues that charity, or the “reasonableness argument” could help us to deal with othering. Reasonableness is an assumption that the other person has rational, coherent, and true reasons for doing and saying what they do – even if, at first, we may not discern the underlying reasons. By invoking a charitable interpretation on another’s actions, we are in turn asked to question our own preconceptions, our assumptions about the reasons the person did what they did.

Imagine that kind of humanity being brought into our judgements of people who are apparently “lacking motivation”, or “seeking secondary gain”, or “noncompliant”?

Brons, Lajos. (2015). Othering: An analysis. Transcience, 6(1), p. 69 – 90

Krumer-Nevo, M. (2012). Researching against othering. Qualitative inquiry and the politics of advocacy, 7.

Lehti, A., Fjellman-Wiklund, A., Stalnacke, B.-M., Hammarstrom, A., & Wiklund, M. (2017). Walking down ‘Via Dolorosa’ from primary health care to the specialty pain clinic-Patient and professional perceptions of inequity in rehabilitation of chronic pain. Scandinavian Journal of Caring Sciences, 31(1), 45-53.

Tonini, M. C., & Chesi, P. (2018). Narrative medicine, an innovative approach to migraine management. Neurological Sciences, 39(Suppl 1), S137-S138.

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Othering

When we look at someone else, we first start by identifying the differences between that person and ourselves. It’s only later that we spend some time identifying the similarities between ourselves and that “other”.

There’s a problem in pain management today. It’s this: too few of “us” are “them” – by which I mean, there are too few people who identify as living with persistent pain working with people who are seeking help for their pain.

“Why is this a problem?” you ask… Well, it’s because it’s far too easy for “us” healthcare providers to forget that persistent pain affects people just like us. Yes, I know the stats: lots of people with persistent pain are multiply disadvantaged by socio-economic status, gender, ethnicity, age, multiple morbidities. But – and this is important – persistent pain doesn’t discriminate, but disability and distress might.

Othering was first brought to attention by Simone de Bouvier. de Bouvier was interested in the way women’s voices were hidden and often compared with men’s voices. “Why”, said men. “Are women not like us?” The answer was evident: women are not men. And in establishing that women are “other”, or “not men”, those dominant voices were able to not only elevate their own voices to prominence, but also minimise and trivialise the words of women.

There are, according to Lajos Brons, two main forms of “othering” – crude, where the assumed differences are stated; and sophisticated, where the assumed differences are stated – and seem reasonable. Let me give an example. It seems reasonable that people seeking help for their pain are needing something they don’t have. And the people they seek help from (healthcare professionals) have that something. Sensible, yes?

“What’s the problem?” you ask. Well, it’s because alongside noticing the difference between the person seeking help and “us” who might have some answers, we also begin to distance ourselves from “them”. And in doing so, we begin to dehumanise or consider that person to be different and somewhat less than us.

I don’t want to accuse readers of stigmatising people who live with pain, so let’s take a moment to unpack what I’m trying to say.

When we talk about someone who is experiencing pain and having trouble with it, we begin by trying to work out what’s going on. In the very best circumstances, we create a “third space” where we can meet one another on an equal footing – both focusing on “what’s going on here”, and neither one assuming a superior position, because while “we” the healthcare professional, might have lots of knowledge about the various factors that could be contributing to this person’s situation, “we” actually know absolutely nothing of this person’s reality, their experience. Meanwhile, the person seeking our help is the expert on what life is like with their pain, their worries, their strengths, their supports, their vulnerabilities. So we meet in the middle, and collaborate, to try to work out how we can develop something new.

Sadly, that space can be muddied by a whole lot of things. We might bring our assumptions about the “other” – that they’re afraid, they need information, they want whatever solution we provide. The person might bring their fear of being misunderstood, their memories of the last time someone “tried” to help, perhaps their idea of what we want to know. We may end up talking past one another.

Let’s see what we can assume about the person in front of us. We might think they just need to know their pain is “an output of the brain” and that “hurt doesn’t equal harm”. We might spend some time educating that person about neurobiology. We might think they need exercise. They need to lose weight. They need do more mindfulness. They need to go back to work. And so our plans for “them” are set in motion. None of these things are bad or wrong – except when we think of the person needing these things before we’ve taken the time to hear what they really want.

What does the person want? Probably like many people, they’d like someone to listen to their perspective. Then they’d like to have some daily practical problems solved: perhaps knowing that they’re not harming themselves. Then maybe some sleep management. And perhaps some time out from people telling them what to do. And maybe some explanations – but only once we’ve taken the time to listen.

“Othering” is one way health professionals maintain a professional distance. By knowing that “we” already do these things, we can feel good about what we offer “them”. But I’d like to ask: how many of us have daily, weekly, monthly goals? How many of us have set them with the SMART acronym? And how many of us have our days timetabled to make sure we do all the things expected of us? What if we have an off day? Is it OK or do we have to explain ourselves? And how many of us also live with persistent pain? I think more of us live with pain than we’re honest about…

I’ve heard “us” talk about “them” and it’s not pretty. “They” need to be more goal-focused, more persistent, more relaxed, more revved up. “They” are ‘non-copers’ anyway. “They” have always needed help for everyday life. “They” have disorganised, chaotic lives.

I wonder what would happen if “we” spent some time checking in on our assumptions about “them”? Would we find ourselves mirrored in the people we try to help? I think we would – and it might help us to remember that we’re guides, coaches, and cheering squads, but we’re no better, no worse, and just as human as “them”. Oh, and some of “us” might even be one of “them” living with pain every day….

Brons, Lajos. (2015). Othering: An analysis. Transcience, 6(1), p. 69 – 90.

de Beauvoir, S. (1949): Le deuxi`eme sexe, Paris: Gallimard, 1976.

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

On “us” and “them”: what if we’re one of “them”?

Over the past few years I’ve been pondering the presumed gap between people living with pain and the people who “treat” or work with them.  Most of my readers will know that I live with widespread pain (aka fibromyalgia) or pain that is present in many parts of my body, and the associated other symptoms like DOMS that last for weeks not a day or two, and increased sensitivity to heat, cold, pressure, chilli, sound and so on.

I first “came out” with my pain about 15 years ago: that is, I first disclosed to people I worked with that I had this weird ongoing pain – and finally joined the dots to realise that yes, I did in fact meet criteria for fibromyalgia. I recall feeling a sense of embarrassment, almost shame, for admitting that I had pain that did not go away – as if I shouldn’t acknowledge it, or speak about such “personal” stuff in a chronic pain service.

There’s a weird sort of cloud over being up-front about persistent pain when you’re working in the field. Perhaps I’m a little sensitive, but I’ve seen the little eye roll and the comments about other people who work in the same field as their health problem: drug and alcohol people who have had their experience with drug and alcohol problems; those working in mental health with their mental health issues; people who have survived rape or other criminal activities going on to work as counsellors… Like “are you meeting their needs, or your own?”

Sapolsky wrote about “why your brain hates other people” pointing out that “us/them” responses occur globally and happen instantly and effortlessly. Our neurobiological ancestry has set us up for this process such that within a 20th of a second of seeing a face of “them” we show “preferential activation of the amygdala, a brain region associated with fear, anxiety, and aggression…other-race faces cause less activation than do same-race faces in the fusiform cortex, a region specializing in facial recognition; along with that comes less accuracy at remembering other-race faces.”

It’s therefore not surprising that when a group of “us” work together to help “them”, coming almost as colonialists with our goodies to dispense to the needy natives, we find it a little eerie, maybe a little confronting when “they” want to come along as equals.

In the 1960’s the disabilities rights movement was founded in the United States. Called Independent Living, and founded by people living with disabilities, this organisation campaigned strongly to be seen firstly as people, and only secondly as consumers or healthcare users. “Nothing about us without us” was one of the key slogans used in their campaign. It’s only just happening in chronic pain management.

Persistent pain is often called an invisible problem. Because pain initially seems to be from an acute problem, people are treated within services for the body system involved.  We have gynaecology services for pelvic pain, cardiology for non-cardiac chest pain, orthopaedic surgery and neurology for low back pain and headache – and so the problem of chronic pain fails to be accounted for because this information isn’t collated as a single problem.

Persistent pain is also invisible because no-one sees the person looking different. I don’t know how many times people living with pain have said to me “Oh but people say you look so well, surely there’s nothing wrong with you?”

And the even more invisible group are clinicians who also live with pain. Believe me, it’s not something many of “us” want to admit! And yet, if the statistics are correct, probably 1 in 5-6 of the clinicians working in persistent pain management have pain that’s lasted longer than 3 months.

“But I’m not like them” I hear you say! What’s that about? Oh that’s right, “we” have the answers… “We” are not struggling from day to day. “We” have it all together.

It’s a protective response, I think. One that protects clinicians from acknowledging our own vulnerability and powerlessness when it comes to knowing how to live daily life with pain. One that means clinicians can still pretend to have “the answers” while simultaneously protecting themselves from recognising just how little difference there is between “us” and “them”.

There are differences, though, and these aren’t pretty and might add to the “us/them” dichotomy.

People who are at greater risk of developing persistent pain (and other comorbidities like mood disorders, sleep disorders, obesity and so on) often come from lower socioeconomic areas. This is not as a result of giving up work and thus dropping income, but is actually a predictor of developing chronic pain (Fryer, Cleary, Wickham, Barr & Taylor-Robinson, 2017; Rios & Zautra, 2011; Sampiero, Cardoso, Bush, Riley, Sibille, Bartley et al, 2016). This means the people we see in primary care, or even in tertiary pain management services via the Ministry of Health in NZ, probably have more difficulty accessing transport to see us; have poorer dental care (Whyman, Mahoney, Morrison & Stanley, 2014); may not be able to afford to see a doctor or fill prescriptions (Devaux, 2015); can’t afford to attend a gym – and indeed may not have enough time to go to one after working two low pay jobs.

I wonder if this socioeconomic disparity adds to clinicians’ tendency to think of people with pain as “other”. On top of greater prevalence of mental health problems (Scott, Lim, Al-Hamzawi, Alonson, Bruffaerts, Caldas-de-Almeida et al, 2016) which can add to this sense of “otherness”, particularly when those disorders include “difficult personalities” (Carpenter & Trull, 2015).

It’s unpleasant and slightly unsettling to think of yourself as a clinician being, let’s call it what it is, prejudiced. And even more disconcerting when one of those “others” is one of “us”. Sapolsky suggests several ways of reducing the “them” and “us” divide:

• Contact – particularly prolonged, task-focused contact where everyone is treated the same
• Making the implicit explicit – show people their biases (what I’m doing in this article!), perspective taking – what is it like to walk a mile in the shoes of a person trying to deal with persistent pain with limited resources?
• Replace “essentialism” with “individuation” – explaining that there are fewer differences between “us”, and that the things we do see can be explained in other ways, less “fixed” ways than “oh it’s genetic”
• Flatten hierarchies – reduce the gap between “them” and “us”. In persistent pain this should mean ensuring people living with pain are involved in both service design and delivery. Nothing about us without us.
  

Do I expect this gap reduction to be easy? Not at all. There are significant barriers between full acceptance: there are angry people who have had their pain experience invalidated; there are clinicians who have been sworn at, spat at, assaulted (yes, it’s happened to me). But until we begin talking, we simply will not begin to address this problem.

Carpenter, R. W., & Trull, T. J. (2015). The pain paradox: Borderline personality disorder features, self-harm history, and the experience of pain. Personality Disorders: Theory, Research, and Treatment, 6(2), 141.

Devaux, M. (2015). Income-related inequalities and inequities in health care services utilisation in 18 selected OECD countries. The European Journal of Health Economics, 16(1), 21-33.

Fryer, B. A., Cleary, G., Wickham, S. L., Barr, B. R., & Taylor-Robinson, D. C. (2017). Effect of socioeconomic conditions on frequent complaints of pain in children: findings from the UK Millennium Cohort Study. BMJ paediatrics open, 1(1).

Rios, R., & Zautra, A. J. (2011). Socioeconomic disparities in pain: The role of economic hardship and daily financial worry. Health Psychology, 30(1), 58.

Sampiero, T., Cardoso, J., Bush, R., Riley, J., Sibille, K., Bartley, E., … & Bulls, H. (2016). (209) Association of socioeconomic factors with pain and function in older adults with knee osteoarthritis. The Journal of Pain, 17(4), S28.

Scott, K. M., Lim, C., Al-Hamzawi, A., Alonso, J., Bruffaerts, R., Caldas-de-Almeida, J. M., … & Kawakami, N. (2016). Association of mental disorders with subsequent chronic physical conditions: world mental health surveys from 17 countries. JAMA psychiatry, 73(2), 150-158.

Whyman, R. A., Mahoney, E. K., Morrison, D., & Stanley, J. (2014). Potentially preventable admissions to N ew Zealand public hospitals for dental care: a 20‐year review. Community dentistry and oral epidemiology, 42(3), 234-244.

Myths about exposure therapy

Exposure therapy is an effective approach for pain-related anxiety, fear and avoidance, but exposure therapy is used less often than other evidence-based treatments, there is a great deal of confusion about graded exposure, and when it is used, it is not always well-conducted. It’s not a treatment to be used by every therapist – some of us need to challenge our own beliefs about pain, and whether it’s OK to go “into” the pain a little, or even slightly increase pain temporarily!

Below are some common misconceptions and suggestions for how to overcome them:

Misconception: Exposure therapy causes clients undue distress and has adverse consequences.

Suggestions: Although exposure therapy can lead to temporary increases in anxiety and pain, it is important to remember that these symptoms are not dangerous, and that exposure is generally carried out in a very gradual and predictable way. Exposure very rarely causes clients harm, but it is important to know your clients’ medical histories. For example, a client with a respiratory condition would not be asked to complete an exposure designed to elicit hyperventilation.

I usually begin with a really clear explanation for using this approach, basing my explanation on what the person has already said to me. By using Socratic or guided discovery, I try to understand the logic behind the person’s fear: what is it the person is most worried about? Often it’s not hurt or harm, it’s worrying that they won’t sleep, or they’ll have a flare-up that will last a looooong time – and they won’t be able to handle it. These are fundamental fears about having pain and vital to work through if the person is going to need to live with persistent pain for any length of time.

Once I’ve understood the person’s reasons for being bothered by the movements and pain, then I work on developing some coping strategies. These must be carefully carried out because it’s so easy to inadvertently coach people into using “safety behaviours” or “cues” that work to limit their contact with the full experience. Things like breath control, positive self-statements, any special ways of moving, or even ways of recovering after completing the task may serve to control or reduce contact with both anxiety and pain. I typically draw on mindfulness because it helps people focus on what IS happening, not what may have happened in the past – or may happen in the future. By really noticing what comes up before, during and after a graded exposure task, and being willing to experience them as they are, people can recognise that anticipating what might happen is often far worse than what does happen.

Finally, I’ll work through the scenario’s – either pictures of movements and activities, or descriptions of the same things. I prefer photographs (based on the Photographs of Daily Activity), because these elicit all the contextual details such as the other people, weather, flooring or surface and so on that are often factors increasing a person’s concerns. We begin with the activity that least bothers the person and consistently work up from there, with practice in the real world between sessions. I’ll go out to the places the person is most concerned about, we’ll do it together at first, then the person can carry on by themselves afterwards.

Misconception: Exposure therapy undermines the therapeutic relationship and leads to high dropout.

Suggestions: If you give your person a clear reason for using this approach and deliver it well,  the person is more likely to achieve success – and this in turn strengthens your relationship. Additionally, there is evidence that dropout rates for exposure are comparable to other treatments.

There is something about achieving a difficult thing that bonds us humans, and if you approach graded exposure with compassion, curiosity, and celebration, you may find your relationship is far more rewarding and deeper than if you simply prescribe the same old same old.

Misconception: Exposure therapy can lead to lawsuits against therapists.

Suggestions: Survey data suggest that lawsuits against therapists using exposure are extremely rare. As with any kind of therapy, you can take several steps to protect yourself from a legal standpoint. Don’t forget to obtain informed consent, ensure your treatment is delivered with competency, professionalism, and ethical consideration.

The best book/resource by far for graded exposure is Pain-Related Fear: Exposure-Based Treatment for Chronic Pain, (click) by Johan W.S. Vlaeyen, Stephen J. Morley, Steven J. Linton, Katja Boersma, and Jeroen de Jong.

Before you begin carrying out this kind of treatment, check you have these skills (from the book I’ve referenced):

Vlaeyen, Johan, Morley, Stephen, Linton, Steven, Boersma, Katja, & de Jong, Jeroen. (2012a). Pain-related Fear. Seattle: IASP Press.

The dynasty of the disc! More history in pain management

Low back pain, despite the multitude of explanations and increasing disability associated with it, has been with humans since forever. Who knows why and I’m not about to conjecture. What’s interesting is that despite ergonomic solutions (fail), increased fitness amongst many people (also a fail), surgical solutions (fail), hands on solutions (fail, fail), and a whole bunch of “special” exercises (fail, fail, fail) we still don’t have a handle on how to reduce disability from it.

I don’t think there will be many people who haven’t seen this:
I’ve never quite worked out why, when you search for imagines of disc bulges (or rather, prolapse of the nucleus pulposus – herniated or ruptured disc was the term preferred by Mixter and Ayer (1935) who proposed the notion of disc prolapse being the cause of “injuries to the spine” (Allan & Waddell, 1989), you end up with these nasty red glowing areas (see below). I think it’s because how else do you convey the idea that this is meant to be “the source of pain”.

Let’s dig back a little into history. Allan and Waddell (1989) describe the “modern” concept of the disc based on four papers: Goldthwaite (1911); Middleton & Teacher (1911); Dandy (1929) and Mixter and Barr (1934). Pathologists had described the presence of these prolapses when conducting postmortem examinations – but their patients couldn’t tell them whether they hurt, and neither was there any clinical awareness of any relationship between pain and disc prolapse. In 1911, two papers described patients with massive disc prolapses – one was a fatal case of paraplegia after a disc prolapse followed by Middleton and Teacher conducting lab experiments to see whether injury (force applied to the disc) could produce a prolapse (Middleton & Teacher, 1911). Goldthwaite described a case of paresis (not pain) after manipulation of the back, presuming that a “displaced sacroiliac joint” was responsible and identified that the nerve at the lumbosacral joint could be compressed – this was supported by later authors.

Cushing, a surgeon, performed a laminectomy which didn’t turn out well – but identified that “narrowing of the canal” might be responsible for the person’s pain, and from there the disc was blamed as the cause of “many cases of lumbago, sciatica and paraplegia”.  This narrative was followed up by other clinicians, and Mixter and Barr (1934) increased the attention given to these theories. Ultimately this led to a meeting of the minds where Mixter and Barr (Mixter being a neurologist, Barr an orthopaedic surgeon) carried out an investigation into enchondromas and and normal discs. What were thought to be tumours were mainly “normal cartilage”.  Mixter and Ayer (1935) went on to pursue the idea of disc prolapse being involved in not only cases where neurological changes were evident, but also low back pain.

Mixter and Ayer (1935) found that surgical responses were not very good – while leg pain was fixed patients still complained of a painful back. Their paper, however, emphasised that lesions of the disc were caused by “trauma” (even though history of even minor trauma was only found in 14 of their 23 cases). Canny men that they were, they noted that if trauma was involved it would “open up an interesting problem in industrial medicine”: who caused the trauma?

Well, like many ideas of the time, this one took root in an exciting climate of medical and surgical discovery – detailed descriptions of the techniques and procedures used were published, but even at that time outcome measures were not reported because, in their words “the question of liability, compensation and insurance loom large on the horizon and add complications compounded to an already knotty problem”. The meme of physical trauma to the back causing disc prolapse and subsequent back pain caught hold of the imagination, and although initially diagnosed using a myelogram, very quickly became replaced (in the name of avoiding complications, cost, discomfort and potentially missing ‘concealed’ discs) by clinical history and neurological examination.

Over the years 1930 – 1950, anaesthetics and surgery became safer and more routine – and accepted, after all look at how these surgeons patched up the brave soldiers! But by the 1970’s the enthusiasm began to wane as more patients reported adverse outcomes, and continued to experience pain.  So… it was decided disc prolapses should only be surgically managed in the case of sciatica rather than simply low back pain – but what about disc degeneration? Surely that could be the “cause”! And yes, we know that even though normal age-related changes were present, these were ignored, along with the somewhat tenuous relationship between disc changes and pain… Instead cadaver biomechanical studies were used to confirm that the disc could bulge with certain forces, and because the problem was now “degenerative” there was no cure – it would ‘inevitably’ progress. Thus the surgical fusion was brought in to play to reduce the “wear and tear” on the disc to “stabilise” the joint (though instability hadn’t been found, and fusion didn’t produce great results).

What was really striking was the move during this period towards rest as treatment. Previously bonesetters (predecessors of osteopathy and chiropractic and manual medicine) manipulated and then quickly mobilised people with low back pain. The hands-on treatment provided short-term relief but the real cure was to keep doing. Orthopaedics, however, based both on knowledge of fracture and tissue healing and ongoing use of surgery for low back pain, emphasised rest to allow “inflammation” to heal. Whether there was any inflammation is moot – what took root in the minds of medical and other practitioners was the need to rest until the pain was gone.

And that, dear ones, is how the epidemic of disability (the effect on function, limitations on what people can do, on participation) was born. It’s called iatrogenesis, or what health professionals can do to increase harm, inadvertently or not. And it’s still happening today.

We should not lay the blame for ongoing harm at the feet of orthopaedic surgeons and neurologists of the day. It was a perfect storm of media attention, community fascination with technology and miracles performed as a result of the war, the heroic soldiers and their equally heroic surgeons, the courts (in the case of industry as responsible for trauma to civilians), and of course the insurers – all over the period between 1880 – and until even today.  While outcomes are being more widely reported in orthopaedic surgery (and other treatments), changing clinical behaviour, community attitudes and the legacy of our history is slow. Cognitive dissonance is a thing… and even though 1965 saw gate control theory revolutionise our thinking about the way pain is produced, the implications are not yet fully accepted.

 

Allan, D. B., & Waddell, G. (1989). An historical perspective on low back pain and disability. Acta Orthopaedica Scandinavica, 60(sup234), 1-23.

Each time we face our fear, we gain strength, courage, and confidence in the doing – Theodore Roosevelt

I’m not certain Theodore Roosevelt actually said that – but who cares?! It’s a great statement. For the person living with persistent pain, though, it can be the last thing you want to hear. After all, it’s tough enough getting up and just doing the normal things let alone challenge yourself! So… how can a health professional help?

Let’s briefly recap. Self efficacy is the confidence I can do something successfully if I wanted to. It’s a robust predictor of many health behaviours including exercise, stopping smoking, eating healthily and coping well with persistent pain (Jackson, Wang, Wang & Fan, 2014; Williams & Rhodes, 2016). It was first introduced as a concept by Bandura as part of his theoretical model of behaviour change, and further discussed in an experimental study in a paper investigating systematic desensitisation processes, arguing that this approach to treatment created and strengthened expectations of personal efficacy (Bandura & Adams, 1977). Bandura argued that people develop a sense (expectation) of self efficacy from their own performance, watching others succeed, being persuaded by someone that yes indeed you have the skills to achieve, and also awareness of physiological arousal from which people can judge their own level of anxiety.

Self efficacy is more than a simple “general confidence” construct, however. It’s far more selective than this. For example, although I believe I can successfully dance in my lounge with no-one there and the curtains closed, this does not translate to me dancing on a stage on my own in the spotlights with an audience watching! Self efficacy refers to confidence to succeed and produce the outcome I desire in a given context – and that’s extremely important for pain management, and in particular, exercise for people experiencing pain.

How does self efficacy improve outcomes? There are at least two ways: (1) through the actions taken to manage or control pain (for example, gradually increasing activity levels but not doing too much) and (2) managing the situations associated with pain (for example, people with low self efficacy may avoid activities that increase pain, or cope by using more medication (Jackson, Wang, Wang & Fan, 2014).

To examine how self efficacy affects outcomes, Jackson and colleagues (2014) conducted a meta-analysis of papers examining this variable along with other important outcomes. Overall effect sizes for relationships between self efficacy and all chronic pain outcomes were medium and highly significant. This is really important stuff – we don’t find all that many studies where a single variable has this much predictive power!

As a moderator, the adjusted overall effect size (r=.50) of self efficacy and impairment was larger than the average effect sizes of meta-analyses on relations between disability and fear-avoidance beliefs, and pain as a threat for future damage and challenge for future opportunities. Self efficacy has stronger links with impairment than cognitive factors such as fear-avoidance beliefs and primary appraisals of pain (Jackson, Wang, Wang & Fan, 2014).  Age and duration of pain were the strongest moderators of these associations and suggest that reduced self-efficacy can become entrenched over time. In other words – as time passes, people experience fewer opportunities for success and begin to expect they won’t ever manage their pain well.

An important point is made by these authors: how we measure self efficacy matters. They found that self efficacy measures tapping “confidence in the capacity to function despite pain” had
stronger associations with impairment than did those assessing confidence in controlling pain or managing other symptoms.

Bolstering self efficacy – not just about telling people they can do it!

Given that self efficacy is domain-specific, or a construct that refers to confidence to do actions that lead to success in specified situations, here are a few of my questions:

• Why are most people attending pain management programmes provided with gym-based programmes that don’t look at lot like the kinds of things people have to do in daily life? It’s like there’s an expectation that “doing exercise” – any exercise – is enough to improve a person’s capabilities.

  BUT while this might increase my confidence to (a) do exercise and (b) do it in a gym – but does it mean I’ll be more confident to return to work? Or do my housework?

• How often are people attending gyms told to “push on”, or to “stop if it hurts”? And what effect does this have on people?

If their confidence is low, being told “just do it” is NOT likely to work. People need to experience that it’s possible to do things despite pain – and I think, to be able to handle a flare-up successfully. Now this is not going to happen if we adopt the line that getting rid of all pain is the aim, and that flare-ups should be avoided. If we want people to deal successfully with the inevitable flare-ups that occur, especially with low back pain, then we need to (a) be gentle, and grade the activities in an appropriate way (b) have some “ways of coping” we can introduce to people rather than simply telling them they can cope or reducing the demands (c) have other people around them also coping well (and that includes us health professionals)

• Ensure we attribute change to the person, not to us.

That’s right: not to our sparkling personality, not to our special exercises, not to the machines we use, not to the techniques we have – you get the drift? Progress must be attributed to the person and his or her skills and perseverance. Because, seriously, all this arguing over which exercise regime is best doesn’t stack up when it’s actually self efficacy that predicts a good outcome.

And for case managers who may read this: just because someone has successfully completed an exercise programme, or a vocational programme with exercise as a component, this does not mean the person can manage successfully at work. Well, they may manage – but they may utterly lack confidence that they can. Context matters.

 

Bandura, A., & Adams, N. E. (1977). Analysis of self-efficacy theory of behavioral change. Cognitive Therapy and Research, 1(4), 287-310.

Estlander AM, Takala EP, Viikari-Juntura E., (1998). Do psychological factors predict changes in musculoskeletal pain? A prospective, two-year follow-up study of a working population. Journal of Occupational and Environmental Medicine 40:445-453

Jackson, T., Wang, Y., Wang, Y., & Fan, H. (2014). Self-efficacy and chronic pain outcomes: A meta-analytic review. The Journal of Pain, 15(8), 800-814.

Williams, D. M., & Rhodes, R. E. (2016). The confounded self-efficacy construct: Conceptual analysis and recommendations for future research. Health Psychology Review, 10(2), 113-128.

The confidence that you’ll succeed if you try…

Self efficacy. It’s a word bandied about a lot in pain management, and for a group of clinicians in NZ, it’s been a shock to find out that – oh no! They’re not supporting self efficacy with their patients very much! It means “confidence that if I do this under these conditions, I’ll be successful”.

Self efficacy is part of Bandura’s social learning theory (click here for the Wikipedia entry) where he proposed that much of psychological treatment is driven by a common underlying mechanism: to create and strengthen expectations of personal effectiveness. Bandura recognised that we don’t always have to personally experiment through trial and error in order to learn. Self efficacy expectations were thought to develop from personal experience (let me do, and I’ll learn how); watching other people try (show me, and I’ll see if you succeed, then I’ll copy you); verbal persuasion that aims to convince that you have the capabilities to manage successfully (encourage me, let me know I can, and I’ll try); and how physiologically aroused or alert you are (if I feel confident inside, I’ll try but if I feel anxious or stressed I’m less inclined to) (Bandura, 1977).

Bandura and colleagues established that “different treatment approaches alter expectations of personal efficacy, and the more dependable the source of efficacy information, the greater are the changes in self-efficacy.” (Bandura & Adams, 1977, p. 288). The conclusions drawn from this mean that treatments where people DO and succeed are more effective at enhancing their belief in self efficacy, while watching others, or being told how to do something are far weaker at building this effect.

Bandura began working on this theory while pondering how psychological treatments, particularly for systematic desensitisation or graded exposure, generated their effects. Systematic desensitisation aimed to reduce arousal levels and thus avoidance while being in a relaxed state – therefore the person is exposed to increasingly “aversive” stimuli (stimuli you want to avoid) while remaining calm and relaxed. Bandura thought that there were other factors involved in avoidance behaviour, developing his theory that expectations of negative consequences alone can generate fear and defensive behaviour and that this isn’t necessarily reflected in autonomic arousal and actions. Bandura hypothesised that reducing physiological arousal improved performance not by eliminating a drive to escape – but instead by increasing the confidence that the person can successfully manage the situation.

For parents, the idea that if you believe you can do what you set out to do, is embodied in the little book “The Little Engine That Could” (Piper, 1930/1989). Remember? The little engine that couldn’t because all the bigger engines said so, but then tried and tried and believed he could – and he did!

So, what does this have to do with pain management?

Let’s paint a scenario. Allan comes to see a hands-on therapist because he has a sore back. He believes that hands-on therapy is the thing, because others have said it’s really good. He goes, gets his treatment and wow! Things improve! The next time he has a sore back (because, you know, it almost always comes back) what does he do? Well, on the basis of his past experience, he heads to his hands-on therapist, because he’s confident this will help his pain. The problem is, his therapist has moved town. He’s a bit stuck now because in his town there are not many therapists doing this particular kind of treatment – what does he do? He doesn’t believe that anyone else can help, and he has no belief that he can manage by himself. He has little self efficacy for managing his own back pain.

Self efficacy is not about whether a person can do certain movements, it’s about believing that the person can organise skills to achieve goals within a changing context – not just what I will do, under duress, but what I can do, what I’m capable of doing, and what I say I’ll probably do.

Self efficacy is not a belief that a specific behaviour will lead to a certain outcome in a certain situation, it’s the belief that I can perform that behaviour to produce the outcome.

So, self efficacy isn’t a generalised attitude – it’s a specific belief about certain actions, certain outcomes in certain situations. It’s not a personality trait like hardiness, or resilience, or general confidence or self-esteem, it’s about being confident that I can generate a solution to a problem in a particular part of my life.

The times when we’re least confident are often when we’re facing a new experience, or we’ve had a bad experience previously. Particularly if we’ve seen other people fail at the same thing, or succeed but do so with much fear and loathing. In the case of pain, there are ample opportunities to have a bad experience in the past, and to learn from other people around us that – oooh back pain is something to be afraid of, and you can’t manage it alone – you need to get help from someone else. Consequently, many people have very low self efficacy for successfully dealing with a bout of low back pain.

And health professionals: we can foster this.

How? By implying that success is due to what we do, rather than being a natural process of recovery. By suggesting it’s something about our “magic hands” or pills, or injections or surgery or special exercises, or “using the core correctly”. In doing so, we’re generating a belief that the person cannot manage alone. That it’s not what the person does, but the magic hands, pills, injections, surgery, special exercises or using the core…

Damush, Kroenke, Bair, Wu, Tu, Krebs and Poleshuck (2016) found that self management approaches to pain increase self efficacy, self management actions, and reduced pain intensity and depression in a group of community patients with chronic musculoskeletal pain and depression. A typically tough group to work with because confidence to succeed at anything is pretty low in depression. Self management aims to ensure the credit for recovery lies with the person doing things that help – creating and supporting a belief that the person has the capability to successfully manage their situation. The techniques? Simple strengthening and stretching exercises, progressive muscle relaxation, and visualisation, in a group setting. Strategies that typically don’t need technology, but do provide support. Information about the natural history of recovery was included – so people were given realistic and optimistic information about their recovery, whether it meant pain reduction, or not. The usual goal setting, problem-solving, and positive self talk were encouraged, and people set goals each week to achieve – maybe based on something from the session, or something the person wanted to do for themselves.

This is not a high-tech approach. This is simple, straightforward pain management as it has been done for years (right back as far as the mid-1970’s and Sternberg!). And through it, these people become increasingly confident that they could successfully manage their own mood and pain independently. As a business model it’s probably not the best for repeat business – but oh how good for those participants who could go away and live their lives without having to think of themselves as patients.

More on self efficacy in the next couple of weeks – we can help people to become confident that they can succeed at managing their pain if it should happen again.

 

Bandura, A. (1977). Self-efficacy: Toward a unifying theory of behavioral change. Psychological Review,  84, 191-215.

Bandura, A., & Adams, N. E. (1977). Analysis of self-efficacy theory of behavioral change. Cognitive Therapy and Research, 1(4), 287-310.

Damush, T., Kroenke, K., Bair, M., Wu, J., Tu, W., Krebs, E., & Poleshuck, E. (2016). Pain self‐management training increases self‐efficacy, self‐management behaviours and pain and depression outcomes. European Journal of Pain, 20(7), 1070-1078.

Maddux, J. E. (2016). Self-efficacy Interpersonal and intrapersonal expectancies (pp. 55-60): Routledge.

Managing sleep problems – a medication-free approach (i)

I’ve recently completed two posts on assessing sleep problems in people experiencing persistent pain, and today I turn my attention to strategies for managing sleep problems – without medication. Why without medication? Because to date there are no medications for insomnia that don’t require a ‘weaning off’ period, during which time people often find their original sleep problems emerge once again… I’m not completely against medications for sleep or pain – but I think they need to be used with care and full disclosure about the effects, side-effects, and the need to eventually withdraw from them.

The approach I’m advocating is a modified form of cognitive behavioural therapy for insomnia (CBTi). CBTi is a form of treatment that is now considered to be first line therapy by both the British Association for Psychopharmacology (Wilson, Nutt, Alford, Argyropoulos, Baldwin, Bateson et al, 2010), and the American College of Physicians (Qaseem, Kansagara, Forciea, Cooke, Denberg et al, 2016). It includes sleep hygiene, cognitive therapy for the thoughts and beliefs associated with sleep, and sleep restriction for those who clinically need it. The modified version I advocate is based on Dr Guy Meadows ACT-based approach and I’ll cover that next week, but I’ll describe the classical CBT approach first.

Basic principles

The basic idea behind a CBT approach to insomnia is that although the initiating event may be out of our control, it’s unlikely to be maintaining the problem – and the factors maintaining the problem are typically the habits people have, and the thoughts and beliefs about their sleep problem.

Sleep is a behaviour that is infinitely malleable, as anyone who has travelled far enough on long-haul flights will know (and parents of small babies as well!). There are cues we use to decide when we should head to bed, and how long we should stay asleep. Bodies in turn respond to these cues and modify automatic processes such as digestion, urine production, and body temperature to ensure we stay asleep for as long as needed. When those cues change – for example, we’re in a new time zone when it’s light at the “wrong” time, and we’re hungry at the “wrong” time, we have trouble staying asleep until the body adjusts. Some people say we can manage a two-hour time zone shift every 24 hours, but in some sensitive people even a one-hour daylight savings change can upset the apple-cart!

If sleep is a habitual behaviour, then we can manipulate the cues to our benefit when sleep is elusive. We learn to associate things like the routine we follow prior to going to bed, light in the room, the “winding down” process we use, and even the timing of our snacks and drinks as a way to signal to the body/mind that we’re sleepy/tired.

There are three basic steps in CBTi: stimulus control (aka sleep hygiene), cognitive therapy, and sleep restriction – with the usual relapse prevention steps an essential part as well.

Sleep hygiene (stimulus control)

The basis of sleep hygiene is to control the stimuli associated with going to sleep so that we clearly indicate to the body/mind that it’s time to get to sleep. That means some basic “rules” around what we do in the time preceding getting into bed, and what we do when in bed trying to sleep.

The golden rule is that the bed is for sleep and sex – not for worrying in, not for watching TV or using the computer or phone or tablet, not for arguing in, not for talking on the phone. If you’re awake in bed for longer than 20 minutes, it’s time to get out of bed until you’re sleepy/tired (more on this in a moment), keeping the lights down low, doing something tedious or boring, then returning to bed to actually sleep.

Simple, commonsense things like keeping the room dark and warm, blocking out the worst of the noise, NOT using a TV or radio or any other noise-making device to go to sleep, ensuring caffeine intake is limited, having a regular bedtime and wake-up time, not taking naps through the day and timing when exercise and relaxation are undertaken are all part of sleep hygiene and most of us are aware of these steps. If they’re not familiar to you, this site is a good one – click.

Cognitive therapy

The cognitive therapy part is about managing the thoughts and attitudes that can exacerbate the sleep problem – things like having a busy mind, worrying about not being able to sleep, believing that it’s crucial to have a certain number of hours of sleep or the next day will be awful, getting that sinking dread as bedtime approaches, following any number of almost (and sometimes actual) obsessive rituals to achieve sleep – and so on…

As usual, with any conventional CBT, dealing with these thoughts involves firstly reality testing – Is it true that you must have a certain number of hours of sleep or the next day will inevitably be terrible? Must the room be absolutely silent or sleep will elude you? Then challenging or disputing those thoughts – “It’s possible I’ll feel tired tomorrow, but I can still function even if I’m not at my best”, “It might take me longer to fall asleep but I’ll get to sleep even though I can hear a clock ticking”.

These simple approaches are reasonably easy to implement – and they are effective. But if sleep is still a problem, and the person isn’t getting more than 4 hours sleep a night, it’s time to bring in the big guns.

Sleep restriction

There are two parts of altering sleep habits that are particularly challenging: getting out of bed after 20 minutes of being awake (especially in the wee hours of the morning!); and using sleep restriction. Neither are easy, yet both are effective.

The idea behind sleep restriction is to reduce the amount of time being in bed while not actually being asleep. Simple huh? So that period from when you first hop into bed and until you actually fall asleep is called sleep latency – and the longer your sleep latency, the less sleep you actually get. You become inefficient at sleeping, and worst, your body/mind learns that it’s OK to be in bed wide awake, and as I mentioned earlier, people begin to associate even going into the bedroom as a negative thing which revs up the autonomic nervous system making it even more difficult to fall asleep.

The nuts and bolts are to work out what time you actually fall asleep, and only go to bed at that time. So if you stay awake until 2.00 or 3.00am, you only go to bed at 2.00am. And you keep your morning wake-up time the same as normal. Yes, this means you end up being only able to sleep for the time between 2.00am and 7.00am! Ouch!

The idea is to extinguish the “habit” of being awake while in bed, reducing the association between being in bed and wide awake, while getting you absolutely tired and sleepy that you fall asleep into a deep sleep quickly. Once this falling asleep part happens regularly (usually for a week or so) then it’s possible to begin a very gradual process of bringing the bedtime back to a more reasonable hour – I usually suggest 15 minute increments, returning to the previous step if falling asleep begins to be difficult.

The process is reasonably difficult – not because it’s hard to stay awake (after all, the person has been practicing it for some time!) but because of the mind chatter. It’s truly tough when your mind starts having a go at you, suggesting you can’t sleep, or you’ll be so incredibly tired you won’t cope, or you’ll be cranky and that it’s dangerous and how on earth  will you go at work without any sleep? And this is where having access to a really good clinician can be helpful, although there are apps that provide a pretty good alternative if a human isn’t available.

For a detailed examination of the literature on sleep restriction therapy, Kyle, Aquino, Miller, Henry, Crawford, Espie & Spielman (2015) provide a really good systematic analysis of how sleep restriction is employed in research trials.  For a plain language version of CBTi, this is a good description – click

As I mentioned above, I’ll be going through a slightly different version of CBTi – an Acceptance and Commitment Therapy approach to insomnia that is also gaining popularity and an evidence base. Come right on back next week for that exciting episode!

 

Kyle, S. D., Aquino, M. R. J., Miller, C. B., Henry, A. L., Crawford, M. R., Espie, C. A., & Spielman, A. J. (2015). Towards standardisation and improved understanding of sleep restriction therapy for insomnia disorder: A systematic examination of cbt-i trial content. Sleep Medicine Reviews, 23, 83-88.

Manber, R., Simpson, N. S., & Bootzin, R. R. (2015). A step towards stepped care: Delivery of cbt-i with reduced clinician time. Sleep Medicine Reviews, 19, 3-5.

Qaseem, A., Kansagara, D., Forciea, M., Cooke, M., Denberg, T. D., & for the Clinical Guidelines Committee of the American College of, P. (2016). Management of chronic insomnia disorder in adults: A clinical practice guideline from the american college of physicians. Annals of Internal Medicine, 165(2), 125-133. doi:10.7326/M15-2175

Wilson, S., Nutt, D., Alford, C., Argyropoulos, S., Baldwin, D., Bateson, A., . . . Wade, A. (2010). British association for psychopharmacology consensus statement on evidence-based treatment of insomnia, parasomnias and circadian rhythm disorders. Journal of Psychopharmacology, 24(11), 1577-1601. doi:10.1177/0269881110379307

Assessing problems with sleep and pain – ii

Last week I wrote about my approach to assessing sleep problems in those with persistent pain. As an ex-insomniac I’ve spent a while learning about sleep so I can understand what’s going on, and why sleep can be such a problem. In this week’s post I want to dig a little deeper into what’s going on with poor sleep, as well as some of the unique features of sleep in people experiencing persistent pain.

Having reviewed the five main areas that are fundamental (and can/should be assessed by anyone working with people who experience persistent pain), the next area I want to look at with people is mood. There are two primary psychopathological contributors to poor sleep: the first we’ve dealt with last week (Question 4 – what’s going through your mind…) which is by far and away the most common initiator and maintainer of insomnia, and it doesn’t even need to be a diagnosable anxiety disorder! The second, you’ll probably have guessed, is depression.

Depression is common in people with both rotten sleep and ongoing pain (Boakye, Olechowski, Rashiq, Verrier, Kerr, Witmans et al, 2016), and there are some suggestions that pain and depression may be related and similar neurobiological processes may be involved for both (increased limbic activity being one of them). In depression, there is increased activity in the HPA Axis, reduced BDNF (brain-derived neurotrophic factor), and reduced 5HT with increased pro-inflammatory cytokines . In persistent pain, there may be activity in the HPA Axis, there is certainly reduced BDNF except in the spinal cord, and reduced 5HT, along with increased pro-inflammatory cytokines. And in sleep disturbances there is also increased activity in the HPA Axis, redced BDNF, reduced 5HT and guess what… increased pro-inflammatory cytokines. And all three interact with one another so that if you happen to be depressed, you’re more likely to experience pain that goes on, and your sleep will also reduce your mood and increase your pain. And the reverse. All very messy indeed!.

What this means is that assessing for low mood and the impact on sleep is important – if someone’s describing waking well before they usually do, in the wee small hours (anywhere from 3 – 5am if they usually wake at 7.00am) I’m ready to screen for low mood. To be honest I always assess for that anyway! Depression is also associated with low motivation and loss of “get up and go” so this is likely to interact with poor sleep, creating a very tired person.

There are three other very important aspects of sleep I like to assess for: sleep apnoea, where someone stops breathing for seconds to minutes at a time, often snorting awake, and this may be associated with snoring and daytime sleepiness. Often the person won’t be aware of their sleep apnoea, so it can be helpful for a bed-partner to let you know whether this is a feature of your patient’s sleep.

The next are a group of movement disorders of sleep, many of which are associated with the third area I assess, which are medications.

Movement disorders of sleep include restless leg syndrome – that feeling of absolutely having to move the legs, usually at night, and relieved by getting up to walk around, but in doing so, making it difficult to sleep. Another is periodic limb movement disorder of sleep, which can be every 5 – 30 seconds of leg twitching all night long, and in some cases, whole body twitching though this is less frequent and less rhythmic. This latter problem may not be noticed by the person – but their bed-mate will know about it! – and this problem may be associated with both sleep apnoea and restless leg, AND some doses of antidepressants. Another common contributor to these problems is low iron levels – worth checking both iron and medications!

Finally with medications, I like to understand not only what the person is taking, but also when they’re taking them. Several points are important here: some medications are usually sedating such as tricyclic antidepressants but in some people nortriptyline can paradoxically increase alertness! If that’s the case, timing the dose is really important and should be discussed with either the prescribing doctor, or a clinical pharmacist. Opioids depress respiration (ie slow breathing down) so can be problematic if the person has sleep apnoea AND is taking opioids, the drive to inhale may be less, causing more frequent and deeper periods without breathing normally. For restless legs and periodic limb movement disorder, some antidepressants (venlafaxine is one of them) in high doses can cause the twitching and once the dose is reduced, this fades away, at least a bit.  There is a very small amount of research suggesting that NSAIDs can influence sleep quality in some people also.

The effects of poor sleep are many: anything from micro-sleeps during the day (problematic while driving or operating machinery!), to more irritability, sluggish responses, less concentration and more difficulty solving problems. Pain is associated with more frequent micro-wakenings during the night (Bjurstrom & Irwin, 2016) but findings with respect to whether deep sleep, REM sleep or light sleep were consistently more affected weren’t clear.

Having completed my assessment, more or less, I can also use a few pen and paper measures: Wolff’s Morning Questions (Wolff, 1974), Kryger’s Subjective Measurements (1991), Pittsburgh Sleep Quality Index (Bysse, Reynolds, Monk et al, 1989) and the Sleep Disturbance Questionnaire (Domino, Blair,& Bridges, 1984) are all useful. Speaking to the partner is an excellent idea because I don’t know about you but I never snore but my partner swears I do! Who do you believe?!

People experiencing insomnia are not very reliable when describing their own sleep habits – we’re terrible at noticing when we’re actually asleep or awake in those early stages of sleep, so we typically think we’ve slept less than we actually have. We also do a whole lot of things to avoid not sleeping – and these can actually prolong and extend our sleeplessness!

We’ll discuss what to do about the factors you may have identified in your sleep assessment in next week’s instalment, but you can rest assured it’s not crucial for you to do anything yourself about some things. For example, if someone has sleep apnoea, referring for a sleep study is important, but not something YOU need to do! But please make sure a referral is suggested to someone who can make it happen. Similarly with medications and sleep movement disorders, it’s not something you should tackle on your own – please discuss managing these with a specialist sleep consultant, psychiatrist, or the person’s own GP. Mood problems – treat as you would any time you find someone with a mood problem.

Next week – off to the Land of Nod: A roadmap?!

 

Boakye, P. A., Olechowski, C., Rashiq, S., Verrier, M. J., Kerr, B., Witmans, M., . . . Dick, B. D. (2016). A critical review of neurobiological factors involved in the interactions between chronic pain, depression, and sleep disruption. The Clinical Journal of Pain, 32(4), 327-336.

Buysse DJ, Reynolds CF 3rd, Monk TH, et al. The Pittsburgh Sleep Quality Index: a new instrument for psychiatric practice and research. Psychiatry Res 1989; 28(2):193–213.

Domino G, Blair G, Bridges A. Subjective assessment of sleep by Sleep Questionnaire. Percept Mot Skills 1984;59(1):163–70.

Kryger MH, Steljes D, Pouliot Z, et al. Subjective versus objective evaluation of hypnotic efficacy: experience with zolpidem. Sleep 1991;14(5):399–407.

Moul DE, Hall M, Pilkonis PA, et al. Self-report measures of insomnia in adults: rationales, choices, and needs. Sleep Medicine Reviews, 2004;8(3):177–98.

Wolff BB. Evaluation of hypnotics in outpatients with insomnia using a questionnaire and a self-rating technique. Clin Pharmacol Ther 1974;15(2):130–40.