Health

skies-copy

On the value of doing, being and becoming


An old occupational therapy tagline was “doing, being, becoming”. The meaning of this phrase is intended to point to the tight relationship between what we do, who we are, and how we develop and grow. As I read blogs discussing an increased emphasis on “real world” outcomes there is something missing from the narratives: that intangible quality that marks the difference between colouring in – and painting. Or filling in a form – and writing a poem. Going from room to room – and dancing. Something about expressing who we are and what we value.

Values are things we hold dear. They are principles, or “desired qualities of behaviour”, life directions (not destinations).

The things we do (our actions) are inevitably infused with our values because how we do things (sloppily, carefully, neatly, with gay abandon, enthusiastically) is an expression of what we think is important. To give you an example, I occasionally vacuum my house. Sometimes I’ll do it really thoroughly – because I love seeing a sparkling house. Sometimes I’ll do it with a flick and a promise – because it’s a beautiful day and I want to get out of the house. In both instances I’ve expressed something about what is important to me – I do enjoy seeing my home looking tidy and organised. I don’t have to have reasons for liking my home this way, I just do. When I do a quick flick through my home it’s not because I’m lazy or I don’t care, it’s because I value getting out of the house more than I value having a tidy and organised home on that day.

Values don’t have to be explained. We don’t have to have reasons for holding them. They’re something we choose to place as important.

Why be concerned about values? Well, they underpin our choices. They provide motivation towards some activities, and away from others.

There is a lot of emphasis at the moment on people with osteoarthritis “getting fit” and “doing exercise”. The current approach in New Zealand is to provide community-based programmes to people who have just been declined joint replacement surgery (because we can’t offer surgery to everyone who wants it). Uptake hasn’t been enormous, and to be honest I’m not surprised. People who haven’t been exercisers are not very likely to begin an exercise programme that is undoubtedly going to increase their pain in the short-term (because, duh, movement hurts!) even if the programme offers hope of improved pain and function in the future. Putting this into a “values” and “motivation” perspective, people usually value comfort over discomfort. They value short-term outcomes over long. If they’ve never exercised much, it’s clear that exercise isn’t something they value. To help them engage in an exercise programme, we need to work hard to identify values they hold dear so they’ll look to those to over-ride the value of comfort over discomfort.

An alternative might be to think of different ways of expressing values that will concurrently meet the goal of increased exercise. For example, I don’t enjoy exercise per se. In fact I’ve boasted that my body is an exercise-free zone! To tell the truth, that’s not exactly the case. I just don’t do “exercises”. Instead I dance. I get out of my chair for five minutes every 20 minutes and go do something involving my whole body. I garden. I play with the dog. I go out in the kayak. I walk miles when I’m fishing.

Some people would argue that “there’s no evidence base for this” – but I think we’ve forgotten that exercises are simply a planned and repetitive form of moving our bodies because we don’t do that nearly as much in modern times as we used to even in the early 1900’s, let alone in stone-age times. I don’t think hunter-gatherers “do exercises” except as training for something like war or hunting (to increase skill).

Living life with chronic pain must become a lifestyle. And it needs to be a lifestyle that has some life to it – not an endless series of “things we must do for health”, unless “health” is a particular value. If life is just about “things we do for health” doesn’t that constantly remind people of what they don’t have? That they’re not healthy? Making them patients instead of people? For most people, to be healthy is a means to an end: they want to connect with family, express who they are, contribute to their society, love and be loved. If the person in front of us isn’t into exercise, it’s OUR job to work out what they value and connect what we think is important to what they think is important, or we will simply fail.

Some simple steps to identify values – try these out in the clinic!

  1. When a person attends your clinic, they’re expressing a value, that they care about something. Asking the person “what do you hope from coming to see me” is a pretty common opening line. Try extending this by, after they’ve answered, asking “why is that important to you?” or “what would it mean you could do” or “how would that make a difference to you?”
  2. If a person says they don’t like something, try suggesting to them that they value the exact opposite. eg if they’ve said they really don’t like running, ask them why: “it’s boring” might be the answer. This answer suggests they like variety and excitement in their exercise routine. Then you can ask them what activities they see as exciting – maybe instead of running, they’d enjoy virtual boxing (bring out the Oculus Prime!), or a scavenger hunt, or geocaching.
  3. Use the 1 – 10 “readiness ruler” technique from Motivational Interviewing. Ask the person to draw a line and put 1 at one end, and 10 at the other. 1 = not at all important and 10 = incredibly important. Then ask them to put a cross on the line to indicate the importance they place on doing exercise/healthy living/pain management (whatever you’re asking them to do). Then (and this is important!) ask them why they put that mark so high. This is important – even if that mark is down on 2!! Ask them why they put it there and not lower. This will help elicit important values that you can then use to connect what you want them to do with what they value.
chilly lake

“Sleep is my drug, my bed is the dealer, and my alarm clock the police.”


Sleep.  The “little death”, the “golden chain that binds health and our bodies together”, “sleep is a hint of lovely oblivion”.

There’s no doubt that having pain and sleeping well just don’t go together – having trouble with sleep is a common problem for people living with pain.  One study reports that over a period of 26 months, 67% of people living with chronic low back pain experienced poor sleep (Axen, 2015). More than this, in the same study one single day of bothersome pain increased the risk of reporting 2 to 7 nights with disturbed sleep by two, and people with chronic low back pain were more likely to report poor sleep than those with acute low back pain.

In another study, (Harrison, Wilson & Munafo, 2015) teenagers from a large cohort study in the UK were surveyed to identify the presence of sleep problems, mood problems and pain problems. 21% of the population reported trouble with sleep, 5.5% reported pain problems, and 2.8% experienced both pain and sleep problems.

And in yet another study, participants with fibromyalgia had significantly shorter and more frequent wake bouts than those with primary insomnia, and the researchers argue that sleep disruption in fibromyalgia does not lead to prolonged periods of wakefulness, but seems to be a disorder of the sleep system whereby internal or external events repeatedly disturb and fragment sleep, and suggest the resulting increased frequency of awakenings may be, at least in part, due to pain, as studies have shown that reducing pain also improves sleep.

These researchers also considered that there is a relatively intact homeostatic drive in participants with fibromyalgia that causes them to quickly return to sleep after an awakening. This is evidenced by shorter initial sleep latency (LPS) and increased slow wave sleep, in addition to shorter duration of wake bouts compared with individuals with primary insomnia (Roth, Brown, Pitman, Roehrs & Resnick, 2015).
People who experience chronic pain can often experience depression, while those who have depression commonly experience sleep disturbance. There are suggestions that common neurobiological pathways exist between all three states.  Atrophy of the hippocampus and increased limbic area activation has been reported across all three conditions, while increased limbic activation occurs in all three conditions as well. Neurochemical changes are also found in all three conditions: HPA-axis hyperactivity has been found, with subsequent alteration to glucocorticoid receptor downregulation, monoaminergic neurons are inhibited as a result of glucocorticoid-induced monoamine depletion, thus reducing inhibitory drive and therefore increasing pain.
Slow wave sleep has been found to inhibit the HPA axis and cortisol secretion, with wakefulness associated with increased cortisol which could lead to increased HPA activation and subsequent elevation of pain (Boakye, Olechowski, Rashiq, Verrier, Kerr, Witmans, Baker, Joyce and Dick, 2015).
Essentially it seems clear that there are neurobiological factors that are implicated in chronic pain, depression and poor sleep.
The importance of this finding shouldn’t be under-estimated. In qualitative studies, participants report that one of the most challenging aspects of dealing with chronic pain is handling fatigue and sleep-related problems (Turk, Dworkin, Revicki, Harding et al, 2008). Pain not only affects sleep quality, but because it intrudes on cognitive processing, there is perceived effort involved in just handling day-to-day situations.
What to do about it…
Well, here’s the thing. Most of the ways GP’s manage sleep problems is through short-term prescriptions of hypnotics such as zopiclone and occasionally benzodiazepines. While there are some useful short-term effects from these drugs, chronic pain is not a short-term problem. Sleep disturbance associated with chronic pain is thus less likely to be helped by simply increasing the length of prescription – these drugs are not intended to be taken long-term. Other medications are used primarily for their pain reducing effects (such as gabapentin and the tricyclic antidepressants), but happily, also possess sedative effects.  These can be taken long-term – but may not work for everyone.
Alternatives include using cognitive behavioural therapy for insomnia. Actually, there are two alternatives – CBTi and sleep restriction, and in some cases, both together.
CBTi is a brief form of cognitive behavioural therapy that has been shown to be highly effective, and focuses on the thoughts and beliefs people hold about sleep, the habits people have associated with sleeping, and associations between habits, thoughts and sleep onset.  Sleep restriction, on the other hand, reduces the amount of time people are actually in bed overall, with the aim to consolidate sleep, and reduce the amount of time spent awake while in bed. Sleep restriction also influences the sleep architecture, so that people can descend into deep sleep more quickly, while reducing the amount of time in REM sleep and lighter levels of sleep.
A final alternative is to use mindfulness to help people become aware of their thoughts and habits about sleep, but instead of challenging or refuting them, learning to attend to them with curiosity and kindness, while at the same time reducing the amount of time awake while in bed.
As a long-time insomniac (now recovered!), I am well familiar with being awake when all else is silent, and on the troubles of trying to get off to sleep while my bed partner snoozes. I also know how hard it is to get back off to sleep after waking in the middle of the night.
Here’s what I did:
  1. Used deep relaxation hypnosis to help establish the association between being relaxed and being in bed. I used this every night for ages, then I realised that I could do the hypnosis “in my head” rather than having someone else’s voice do it for me.
  2. I got out of bed if I hadn’t been to sleep in about 30 minutes. Especially during the middle of the night! Not easy, but worthwhile so I didn’t lie there trying hard not to fidget and wake my partner. I found that if I tried to stay in bed I’d end up being so aware of my fidgeting and so strung out by trying NOT to fidget that I’d be wide awake and stressed. Not the best way to sleep!
  3. Keeping the lights down low, and reading a book I’d already read was the next step once I’d got out of bed. That way I didn’t need to read every word, and it didn’t matter if I snoozed a little.
  4. After about 30 minutes or so, I’d slide back into bed with my mind full of the story rather than being frazzled by not sleeping. And I’d return to my relaxation and breathing and gradually slip off to sleep.
  5. More recently I’ve kicked the mental hypnosis/relaxation habit, and I now go to bed and simply roll over and slow my breathing and fall asleep. Learning to do this without using the hypnosis has been fabulous so I no longer need to worry about being awake at 3.00 in the morning! If I do wake, I head to the toilet, do my business, then slide back into bed and roll over and slow my breathing.

What I’ve learned from this is that the main habit I needed to learn was how to put myself to sleep. I also learned to remind myself that the occasional night with poor sleep is OK, I can handle. And if my sleep really turns to custard I have the skills to manage it myself.

I can’t stop the fact that fibromyalgia means there are some changes to the way my brain processes information, and that this means I’m likely to have poorer sleep than many other people. What I can change is how much I allow that to affect me. And by learning how to go off to sleep by myself, without the external aids, has meant I actually do fall asleep more quickly and don’t feel the effects of disrupted sleep to the same extent as I used to.

 

 

walkaway

An allied health response to primary care for musculoskeletal aches and pains


For as long as I can remember, the joke about doctors saying “take two paracetamol and ring me in the morning” has been a pretty accurate reflection of reality – but no more perhaps?

A large review and meta-analysis of randomised placebo controlled trials of paracetamol in back pain and osteoarthritis has found that although paracetamol can provide a limited reduction in pain in osteoarthritis but not at a clinically important level, there is an elevated risk (four times) of having abnormal results on liver function tests (Machado, Maher, Ferreira, Pinheiro, Lin et al, 2015). The meaning of this elevated risk on liver function isn’t clear, but what is clear is the very minimal effect of what has been used as a mainstay drug for two of the most common complaints in the world.

Oh what are we to do? Because if the findings about paracetamol are stunning, add to it the clear evidence of harms associated with nonsteroidal anti-inflammatories, and we have a situation where the two most common front-line treatments for musculoskeletal pain are being strongly questioned. What’s a busy GP meant to do?

As a community, I think health professionals working with people who have musculoskeletal pain need to begin a concerted campaign to show the value of nonpharmacological approaches to managing life with aches and pains. We already have this beginning with some of the physiotherapy social media campaigns – see a physio first! But I think we could add “See your allied health team first”.

What would it mean to see an allied health professional first? And what would allied health professionals need to do to make this a valid option?

I think allied health professionals would need to make some changes to how we assess people presenting with pain – I wouldn’t want to ban the biomechanical, but here’s a question: how well do physiotherapists consider the psychosocial in their history taking? Luckily I don’t need to have the answer because Rob Oostendorp, Hans Elvers and colleagues have done the work for me.  In this study, therapists were observed conducting their first assessment with a new patient experiencing chronic neck or back pain. Their interviews were reviewed against the SCEBS (Somatic, Psychological (Cognition, Emotion and Behaviour) and Social dimensions of chronic pain), and given scores for how well the interviews explored these domains. Perhaps unsurprisingly, history taking for the Somatic dimension (how sore, where are you sore, what triggers etc) was excellent, with 98% including this area. BUT, and you’d expect this perhaps, Cognition was 43%, Behaviour was 38%, Emotion was 28%, and Social was 18%. What this means is that despite the clinicians themselves considering their coverage for all but the social domain as being “adequate”, in reality the only aspect that these clinicians covered well was the most basic area – “what does it feel like?”.

Challenging indeed.

Now, what would happen if we then examined what these clinicians do with that information? Because if we’re not so wonderful at collecting useful information across domains, my bet is that we’re even worse at combining this information to make sense of it – in other words, developing useful formulations.

Unfortunately I don’t have any information on how we as allied health clinicians use the information we collect, but if my experience as an educator and the very limited number of papers discussing formulations is anything to go by, I don’t think we’re doing too well. I suspect we tend to collect information then blithely continue doing what we’ve always done in terms of treatments. And I’m sorry I don’t have the evidence to support my hunch – would someone take this on for a project, please?

I think allied health professionals also need to make some changes to how we present what we do to the general public. While most people in the general public know that physiotherapists help people move, osteopaths are gentle and work with their hands, chiropractic looks after backs and necks – I’m not so sure anyone really knows what occupational therapists might offer, and I’m certain there would be some angst if psychologists were recommended as front line clinicians for musculoskeletal problems!

You see, while we’ve been concerned about a biomedical dominance in musculoskeletal pain, we haven’t been as good at helping the general public recognise that aches and pains are fairly common and often not a sign of pathology. We’ve been pretty poor at showing the value of relaxation, mindfulness and down-regulation as useful ways to deal with pain. We haven’t addressed the need to engage in occupations and activities that are fulfilling and enjoyable and enriching. In fact, I venture to say that we have almost wholly bought into the biomedical model when it comes to how to conceptualise musculoskeletal aches and pains. We are as guilty as anyone for considering an ache or pain as a sign that the person needs to be “fixed” or “mended” or “aligned” or “stabilised”.

I think a more radical approach, and one that allied health professionals can really endorse because there is evidence for it, is that living well involves being fully human beings. That means allowing ourselves to engage in what we love to do, to not only be active but also to relax, to be exuberant and to be peaceful. To think of our lives as a whole, rather than an isolated ouchy hip or knee or neck. And to look to our whole lifestyle as key to living well rather than “treating” the bit that happens to be bothering us right now.

Imagine that – an allied health workforce that puts out the message that life and wellbeing are the products of balancing all the wonderful facets of being human.

 

 

Machado, G.C., Maher, C.G., Ferreira, P.H., Pinheiro, M.B., Lin, C.-W.C., Day, R.O., . . . Ferreira, M.L. (2015). Efficacy and safety of paracetamol for spinal pain and osteoarthritis: Systematic review and meta-analysis of randomised placebo controlled trials (Vol. 350).

Oostendorp, Elvers, Mikolajewska, Laekeman, van Trijffel, Samwel, Duquet (2015). Manual physical therapists’ use of biopsychosocial history taking in the management of patients with back or neck pain in clinical practice. The Scientific World Journal, 2015, art. 170463, doi: http://dx.doi.org/10.1155/2015/170463

5588269974_1ddacf0976_z

Friday Funnies


It’s been a while since I posted a Friday Funnies – my apologies. I’m happy to say that despite this lack, my sense of humour has remained intact, fed by regular dollops of my favourite cartoons from The Oatmeal (who can resist the call of “15-ish Things Worth Knowing About Coffee“, or “Ten Words You Need To Stop Misspelling“, or even “Cat vs Internet“?), and XKCD – the authors who announce the site to be

A webcomic of romance,
sarcasm, math, and language.

– and who add this warning: Warning: this comic occasionally contains strong language (which may be unsuitable for children), unusual humor (which may be unsuitable for adults), and advanced mathematics (which may be unsuitable for liberal-arts majors). I mean – how could I resist?

What’s best about XKCD is that their cartoons are Creative Commons – so I can share legally! (but not sell).

On the original site, if you hover your mouse over the second box it says “If it were anything over a 2 I wouldn’t be able to answer because it would mean a pause in the screaming.”  So true.

And my final source of glee and giggles (don’t blame me, that’s alliteration for you) is Hyperbole and a Half

Go HERE and be transfixed – I so remember this when I was a kid…These guys are also responsible for “The Real Pain Scale”.

Which all contributed to this little piece from me, so it’s really not my fault at all.  I know.  I’m just not in the same league.

5588269974_1ddacf0976_z

Daily routines: a framework for healthy living


ResearchBlogging.org
I’m working with a couple of people who are having a good deal of trouble maintaining a routine.  Things like having a reasonably regular bedtime and wakeup time, eating regularly, having periods of energising activity, and periods of rest and relaxation.  While some of our normal routines have been disrupted by the earthquake in Christchurch, and things like getting to a supermarket or petrol station or even to see a doctor can mean travelling further than normal, for these people, routines have not ever really been a strong point.

As someone who likes a bit of routine, I personally struggle to understand how people can miss out a meal or go to bed at wildly different times of the night (or early morning!).  Although I have to say I’m not averse to the occasional lie-in!  But there are some real problems with not having a bit of a framework from which we can temporarily deviate.

Why is having a routine helpful?

Well, some of our basic functions, like sleep and hunger, digestion and even alertness are initially based on cues from our environment.  Although they can be influenced by many factors, these basic drives remain in place, and are there to keep our bodies in homeostasis.

Having a routine that acknowledges and integrates the requirements of our bodies helps to keep us functioning, at a physiological level.  For this reason, most of us keep to a regular food intake over the course of a day, we rest or sleep at nearly the same time each night, and when we don’t follow this on the odd occasion, we usually make it up over the next day or so.

Having a regular bedtime and waketime provides a framework for establishing good sleep. Erratic bedtimes and waketimes make it difficult for the body to relax and fall asleep quickly, and to ensure consolidated sleep with the regular sleep architecture that gives us refreshing sleep.  When bedtimes and waketimes are erratic, sleep can become disrupted and eventually, especially with daytime napping, sleep can be spread across almost the whole day.  This makes it really difficult to get deep, refreshing sleep with appropriate REM sleep periods and delta sleep periods.  Re-establishing good sleep typically means starting with a regular bedtime and wake time! For a nice explanation of sleep architecture, this post by Emily Deans of Evolutionary Psychiatry blog makes it all clear.

We use the idea of sleep patterns and mealtimes as an anchor for many things. Many medications need to be taken regularly, according to time rather than ‘as needed’ or ‘when I remember’.  This can be because of the way the active ingredients of medications are released into the bloodstream, and how the body processes the drugs.  It’s also one way of minimising the learning effect that can come from taking a medication when distressed, experiencing both a pharmacologic effect AND reduction of distress through taking action.  Over time (and sometimes not very much time!), this can become a very strongly learned response, so much so that the relief experienced occurs well before any medication could be absorbed.  And this can lead to increasing use of medication to reduce distress – and subsequent over-use, and in some cases, dependence on medications that can be harmful.

We also need to eat regularly to feed the brain. Brains use an enormous amount of energy, and without adequate food, brains simply don’t function all that well.  It’s one of the reasons for having breakfast! Inadequate diet, or erratic eating patterns, sometimes because of pain and sometimes because of side effects of medications, and sometimes because eating hasn’t been all that important, contributes to difficulties concentrating and remembering, something that people with chronic pain can often complain about (here’s a 2001 paper by Peter Havel on the role of peripheral signals as they contribute to hunger and homeostasis).

In pain management, routines are almost assumed to be present. We’re used to establishing a baseline level of activity – whether it’s walking or doing the housework or going to work, when we’re starting a graded activity programme we ask the person to estimate how much they’re ‘usually doing’.  So if the person’s not used to having a routine – oops! it’s pretty hard to set a baseline.

What’s the point of setting a baseline? Well it’s important for determining the starting point for increasing activity.  It allows us to help the person maintain a consistent level of activity despite fluctuations in pain.  We often find that people with chronic pain let pain determine how much and how often they do activities, and this interferes with their ability to plan ahead to go out socially, or to manage the grocery shopping, or go to work.

There’s quite a body of research on the development of habits and routines – and much more to learn! I’ve included a number of references for those interested in exploring this aspect of function in more detail.  While the majority of these references are taken from a research meeting in 1999 and I truly hope more research has been carried out since then, they provide some background reading on concepts of habits and routines – and I’d especially draw your attention to the paper by Reich (2000), on the place of ‘routinization as a factor in coping for women with fibromyalgia’.  This is essential research – pain often disrupts routines, and most pain management assumes that routines are present, or attempts to help people regain routines.  Maybe we need to learn more and focus more on this in our treatments.

 

Clark, F. (2000). The concepts of habit and routine: a preliminary theoretical synthesis. Occup Ther J Res, 20(Sup 1), 123S-137S.

Davidson, L. (2007). Habits and other anchors of everyday life that people with psychiatric disabilities may not, take for granted. OTJR:Occup Particip Health, 27(Suppl 1), 60S-68S.

Poole, J. (2000). Habits in women with chronic disease: a pilot study. Occup Ther J Res, 20(Sup 1), 112S-118S.

Reich, J. (2000). Routinization as a factor in the coping and the mental health of women with fibromyalgia. Occup Ther J Res, 20(Sup 1), 41S-51S.

Reich, J., & Williams, J. (2003). Exploring the properties of habits and routines in daily life. OTJR: Occup Particip Health, 23(2), 48-56.

Rogers, J. (2000). Habits: Do we practice what we preach? Occup Ther J Res, 20(Sup 1), 119S-122S.

Tickle-Degnen, L., & Trombly, C. (2000). The concept of habit: a research synthesis. Occup Ther J Res, 20(Sup 1), 138S-143S.

Wiese, D. W. (2000). Habit: What’s the brain got to do with it? Occup Ther J Res, 20(Sup 1), 6S-20S.

Williams, J. (2000). Effects of activity limitation and routinization on mental health. Occup Ther J Res, 20(Sup 1), 100S-105S.

Williams, J. (2000). The concepts of habit and routine: a preliminary theoretical synthesis Occupational Therapy Journal of Research, 20 (1), 100-105

5588269974_1ddacf0976_z

Talking about it: is it worth encouraging emotional disclosure for people with pain?


ResearchBlogging.org
One of the more common coping strategies for people with chronic pain is talking about stressful experiences. It’s thought to be healthy to be open and express feelings, while the very idea of repressing or avoiding emotional content seems almost Victorian. And there are various talk therapies in which emotional disclosure is encouraged – in fact, one popular approach suggests that people risk developing chronic pain if they don’t discuss ‘trauma’ (Sarno). So, does it work?

Some studies of emotional disclosure have found that it has ‘moderate’ effects – people can feel emotionally better, and their general health status can also improve.  Other studies are more equivocal, with less positive outcomes.  Even in meta-analyses, outcomes have been inconclusive.  It has been thought that some of the differences might be whether the participants were encouraged to write or instead, to talk about their situation.

Researchers from Detroit studied the effect of either written or verbal emotional disclosure in people with rheumatoid arthritis.  In a nicely conducted study, people with rheumatoid arthritis were randomised into two groups, one assigned to talking, while the other group was assigned to writing instead.  Within each of these two groups, participants were then randomised into three groups – one group was assigned to disclosing recent stressors, while the other two groups were assigned to either neutral topics or positive topics.  All in all, six different conditions.

What they found was that in the short term, talking or writing about stressful topics made a small difference compared with the two control conditions, but this wasn’t sustained, and it influenced only a few of the outcomes. The authors state “disclosure specifically about negative or stressful experiences – rather than just emotionally relevant experiences – is important”, so it’s not enough to write about positive experiences, they need to be negative experiences to have any effect at all.

The authors suggest that one reason for the weak effect was that the participants talked about the stress of having RA rather than “more powerful, unresolved stressors” such as “shameful experiences including childhood abuse, family of origin problems, and adult victimization” which were rarely disclosed.  They suggest that “such events may simply not have happened to these patients, we think it is likely that patients chose relatively safe, publicly known, and socially validated stressors to disclose”.  It’s my belief that disclosures such as these more serious and shameful ones are more likely to occur in the context of a long-term therapeutic relationship rather than a short-term experimental situation, so this could be an artifact of conducting research in this way.

One interesting finding is that none of the participants viewed either written or verbal disclosure as a particularly credible stress reduction technique.  The approach seems to lack “face validity” as a way for people to manage their stress, so it may mean further work on how to present this approach.

The conclusion in this paper is that although the effects were weak, it’s surprising that there was any effect at all in such a simple and inexpensive technique. They state: “there is modest or limited support for both written and spoken emotional disclosure among people with RA, with effects limited to a few outcomes and generally later rather than earlier time points, such as 6 months after disclosure.” They go on to say “The findings also remind us that stress and negative emotions are potentially important intervention targets for some patients with RA, and encouraging patients to approach rather than avoid such emotions can be beneficial.”

There were some process issues obtained in this research, and it’s nice to see them documented in this paper.  Many men withdrew from the study, and only 1/3 of the people approached actually participated in the study.  It would be helpful to learn why people don’t see disclosure as a useful or helpful approach.

So, is it useful to have people talk about negative experiences in order to manage stress and improve their health?  Well, in people with rheumatoid arthritis, it seems that the overall conclusion from this study is no.  The effects are very small and the authors suggest it’s possibly only helpful for people who can acknowledge that they have unresolved stressors, but who inhibit their feelings and don’t have anyone to talk to.

 

Lumley, M., Leisen, J., Partridge, R., Meyer, T., Radcliffe, A., Macklem, D., Naoum, L., Cohen, J., Lasichak, L., Lubetsky, M., Mosley-Williams, A., & Granda, J. (2011). Does emotional disclosure about stress improve health in rheumatoid arthritis? Randomized, controlled trials of written and spoken disclosure PAIN, 152 (4), 866-877 DOI: 10.1016/j.pain.2011.01.003

keep your love

Opportunity for a conversation


I had a wonderful discussion with another occupational therapist about the profession’s response to the earthquake.  “How”, she asked, “Can occupational therapists from the other end of the country help those in Christchurch?”

To further this discussion, I’ve added a new page to my blog for people to contribute their thoughts about how occupational therapists can aid in the recovery process for people in Christchurch.

Feel free to contribute, comment, say your piece – and even if you’re not an occupational therapist, but you have some thoughts about how occupational therapy as a profession might be able to help, please add your comments too.

Go here for the page…

keep your love

After quake aftermath


Once again I’m lead to pondering the different ways my situation has affected me, and what might be helpful to mitigate some of the less frequently mentioned aspects of coping in a disaster.

Like many people, I’m still managing with quite limited power, water that is a trickle (not enough pressure to fill a toilet cistern let alone the hot water cylinder!), and the hassles of finding a supermarket and shops that are open, a petrol station before I run out of gas, and ways to dispose of human waste matter safely.

I posted before about the loss of cues that usually help me to maintain my normal routine.  With the loss of these cues, and changes to my usual routine, as well as the inevitable anxiety that comes with repeated aftershocks (Is that a truck going by or an aftershock? When will this aftershock stop? Is that crack in my driveway getting bigger? What about the one in my wall?), it’s no wonder that now, 13 days after the quake, I’m feeling fatigued.

Now while some people would argue that I’m somewhat inclined to be over-active (One medical report written about me after my concussion described me as having a ‘frenetic’ level of activity!), I generally like to have a routine.  I like to shop in the same place, with a list, on the same day every fortnight.  I like to go to the same service station, use the same route to and from the places I go.  My daily activity pattern is similar from day to day.  I find this helps me maintain a sense of security (no, I’m not obsessive about it!), and it helps reduce the amount of brain power needed to make decisions.  This is not what is happening right now! I’m starting to get tired.

And my thoughts turn to the people I work with, people with chronic pain.  While some have routines that serve them well, many don’t.  Some are too active in parts of the day, slumping into a ‘bust’ period at other parts of the day.  Some are quite chaotic and don’t have a regular routine at all.  Others are inclined to stop altogether.  Many, in response to stressors, find their pain flaring up and have trouble thinking clearly to organise their response to daily demands.

I was handed a leaflet prepared by the NZ College of Clinical Psychologists in response to the Christchurch Earthquake.  (Go here for their page for the people of Canterbury) The leaflet reminds people to maintain, amongst other things, routine and says ‘familiarity is comforting’.  It’s true.

It also says stay connected (we need each other),  save your energy (keep if for important things), lifestyle (balance is healthy), safety (protect yourself in every way).

I totally agree.

What I wonder is whether the people who seek our help, particularly people compromised by chronic pain with its associated fatigue, reduced cognitive capacity, influence on mood and anxiety and sleep, can put this advice in place.

What can we do after an event like this to support people with chronic pain?  I see an enormous amount of effort being put in place to support the immediate needs of people around me.  While not all the efforts are as coordinated as I’d like (not a portaloo in sight in my street, despite five households of folk in their 80’s, while a colleague who lives in an area with water and power has THREE of the darned things within 100 m of home!) those basic concerns are being addressed.  There is a concerted effort by the clinical psychologists to establish an acute stress response service.  There is counselling for people.  There are resources for people with disabilities who need help with environmental modifications. 

BUT – and you knew there would be one –  nothing about HOW to maintain routines, how to stay connected, to save your energy, to maintain a healthy balanced lifestyle or to be safe (emotionally and physically).  And not a lot for the weeks and months ahead of us all when we’re feeling fatigued, grumpy from poor sleep, dealing with cold and wet weather and poor roading and limited consultation from Powers That Be.

This is a call for occupational therapists, in particular, to begin thinking about ways to proactively engage with vulnerable people in the community to help return some control and routine to lives disrupted by not only disaster, but pain as well.  And no, I don’t mean focusing on patients, or people who have already been identified as having disabilities or special needs, or even those who go out and look for help.  This is a time to be positive about preventing loss of those things that maintain self efficacy and internal locus of control in people who are vulnerable.

I don’t think GP’s centres are always the best place for this kind of help – after all, people who are vulnerable may not be the same people who seek help.  I think of the households of elderly folk down my street – none of them have sought help.  We need to move beyond thinking in ‘health = medical’ and into ‘health = living’.  People with pain often don’t look for help, hence my PhD. 

How could we do this kind of wellbeing work? I think the Welfare Centres that we have established all around Christchurch as part of the response to this quake could do with an occupational therapist who could be available to talk with people about how to retain their routines and habits.  Then I wonder if supermarkets and pharmacies and shopping malls might be the next best places to set up shop.  Posters perhaps.  In libraries, pubs, cafes, and most particularly, takeaway shops.  Maybe leaflet drops in neighbourhoods. 

What do you think?

CIMG5554

Living well with chronic pain: A grounded theory study


While ‘coping’ with chronic pain has been studied extensively, the people usually studied have been those seeking treatment, and because of this, little is known about how people cope well despite their pain.  A large group of people experiencing ongoing pain do not seek treatment, and while there is speculation that factors such as personality or social support may be associated with this, there is very little known about how this group of people have developed coping skills, or the strategies they employ.

Consequently there is a lack of theory to explain how some people with chronic pain continue with important activities despite their pain.

My PhD study is intended to develop a theoretical understanding (using a grounded theory methodology) of how people cope well despite their pain, identifying the range of coping strategies used by these people, when these skills are used and when they are not, and the relationship between different strategies and how they are used during coping efforts.

Through this research, I will generate theoretical explanations grounded in the data obtained from people who cope well, so that clinicians are supported in their work to develop existing strengths and resources in people who seek treatment to support their pursuit of a ‘normal’ life as they view it. The theory developed within this study may also help to explain how some people live less ‘well’ with their pain, and how clinicians may be able to help this group.

Design
A grounded theory methodology has been chosen to develop an explanatory theory that focuses on strengths, resources and diversity in people who have persistent pain but cope well.

Grounded theory is a method for developing theoretical explanations about social processes developed from qualitative and quantitative evidence gathered from a variety of sources.

The grounded theory process involves:

(1)     obtaining information from participants through interview

(2)     analysing the information using a process called ‘constant comparative analysis’ which involves coding the material obtained, generating mutually exclusive categories and finally, describing the relationships between the categories (usually stemming from a single ‘core’ category)

Analysis begins as soon as the first pieces of data are collected from participants, and further information is obtained to ensure the broadest variability of the phenomenon under investigation is identified. Information may be obtained by interview, but also from questionnaire data, and extant theory from the literature.

The developing theory gradually becomes more abstract through the process of describing relationships between categories.  The research does not start with a theory or hypothesis to prove, disprove or extend. Existing theory is regarded alongside observations taken directly from the data.  This increases the potential for the completed theory to be close to the everyday reality of both participants and clinicians (Elliott & Lazenbatt, 2005). The process requires the researcher to identify as many underlying similarities and diversities as possible within the data.  As a result, new explanations for the patterns that exist are generated, and the widest range of possible patterns or phenomena is integrated (Skeat & Perry, 2008).

Grounded theory is used to develop a model directly from the data obtained from participants, which ensures the resulting theory ‘fits’, ‘works’, is relevant and be modifiable as new data becomes available.

It is a complete methodology and researchers using grounded theory are cautioned to adopt the whole approach rather than selectively use parts of the process (Weed, 2009).

Participants will also be asked to complete three questionnaires, either alone or with the researcher.  Responses from these questionnaires will be entered into analysis in the same way as interview data.

Participants
The first participants to be recruited to this study will be people with diagnoses of ankylosing spondylitis or rheumatoid arthritis, working and living in the local community, using medication for disease management but otherwise self-identified as ‘well’.   Between 15 – 40 participants are generally sought for a grounded theory, but the total number and participant characteristics will be dependent upon the emerging theory and data saturation (that is, when no new theoretical constructs are generated).

How can you help?

As you know, Christchurch sustained the second of two major earthquakes one week ago.  I was about to proceed with recruiting participants for this study within the Canterbury region.  In view of our circumstances I don’t think it’s appropriate to proceed with this at this time.  It leaves me with a fairly tight time-frame to identify suitable participants so that I can complete work on this before the end of 2011.

I’m therefore going further afield to identify people who might be interested in being part of this study.

My plea is for anyone reading my blog who might have ideas about how to identify people who live ‘well’ in the community and meet the inclusion criteria above and who are not in Christchurch, to drop me a line.  My original strategy included local swimming pools (with spa and sauna), adverts in local newspapers, GP practices, Rheumatology clinics and libraries.  I also intend to use Arthritis NZ newsletter.  I had been intending to restrict recruitment to Christchurch – but clearly that’s not going to be the best approach, at least right now.

If you have any ideas – please let me know in the comments below, or  fill out this form (it’ll be emailed direct to me and won’t appear in the comments section):

Elliott, N., & Lazenbatt, A. (2005). How to recognise a ‘quality’ grounded theory research study. Australian Journal of Advanced Nursing, 22(3), 48-52.

Skeat, J., & Perry, A. (2008). Grounded theory as a method for research in speech and language therapy. International Journal of Language & Communication Disorders, 43(2), 95-109.

Weed, M. (2009). Research quality considerations for grounded theory research in sport & exercise psychology. Psychology of Sport and Exercise, 10(5), 502-510.