activity

crossing paths

Pacing – Activity management concepts (a longer than usual post)


In the literature recently there’s been a flurry of activity around pacing as a concept. When I first wrote about pacing I couldn’t find very much that had been published, and I ended up writing something that made sense to me at the time. Today I hope to add to that by summarising a few of these recent papers, and discussing some findings from my PhD research.

Firstly, what is pacing?

Pacing isn’t well-defined. In one of a few recent papers on pacing, Nielson, Jensen, Karsdorp, & Vlaeyen (2013) suggest that pacing should be defined as “…the regulation of activity level and/or rate in the service of an adaptive goal or goals” (p. 465).  Gill & Brown (2009) point out that because pacing is poorly defined, and despite the term being used widely and most especially in the mid 20th century (and related to the “3 P’s” of planning, positioning and pacing used for rheumatoid arthritis), there are a diverse range of articles mentioning pacing, but no consensus as to what it might include.

Jamieson-Lega, Berry and Brown (2013) scanned the literature and sought feedback from stakeholders from a range of disciplines, and developed a concept map for the term. Concept mapping involves identifying the use of the concept in the literature, defining the attributes of the concept and developing a model case (a “pure” example), and both borderline and contrary cases (incorporating none or only some of the concepts). Antecedent and consequent outcomes associated with the concept of pacing were also defined, and empirical referents, or phenomena that show how the concept has occurred.

Key criteria for pacing, drawn from the literature by Jamieson-Lega, Berry & Brown (2013) show that pacing has five consistent attributes:

  1. Action – pacing involves intentional behaviour
  2. Time – pacing occurs over time and involves attending to time
  3. Balance – weighting activity and rest in accordance with intended outcomes
  4. Learning – pacing needs to be learned, it requires an effort
  5. Self-management – the process of using pacing involves independently integrating the practice once the skill has been developed.

The definition proposed by this group is therefore slightly different from Neilson and colleagues:

“Pacing is an active self-management strategy whereby individuals develop self-efficacy through learning to balance time spent on activity and rest for the purpose of achieving increased function” (p. 209).

When would someone need to develop this skill and what might happen if they use it successfully?

Janieson-Lega, Berry and Brown (2013) suggest that there are prerequisites for the need to develop pacing.  These involve activity disruption secondary to pain, imbalance between activity and rest, patient’s lack of pain self-management knowledge and having pain. When an individual successfully uses pacing, the expected outcomes are pain management, self-direction and improved self-efficacy, avoidance of pain exacerbation, balanced activity/rest, increased functional ability, and increased knowledge and skills in activity planning and prioritising (p. 210).

Therefore, if a person with chronic pain isn’t able to engage in what they want to do, finds it difficult to have sufficient rest or activity, lacks self-management knowledge and has pain, they could expect that pacing would enable them to manage their pain more effectively, become self-directed and more confident, minimise flare-ups, have a balance between activity and rest, be able to do more, and know more about what is important and how to achieve what is valued.

What does the literature suggest?

Despite the problems with defining pacing, and consequently having no real measure of pacing, there have been several studies examining the relationship between pacing and other important variables. The first study I saw of pacing was McCracken and Samuel’s 2007 paper looking at the relationship between avoidance, pacing and other activity patterns.  Surprisingly, these authors found that pacing was associated with both activity avoidance and disability. From this study, the authors suggested that avoidance activity may resemble healthy coping (and from this I deduced that pacing is considered “healthy”).

Murphy, Smith & Alexander (2008) conducted a small pilot study of activity pacing in women with lower limb osteoarthritis. This study used actigraphy to monitor movements, and correlated this data with self-reported pain and fatigue. This study found that “high pacers” had more severe, escalating symptoms, and activity pacing was related to lower physical activity. Karsdorp & Vlaeyen (2009) found that activity avoidance but not activity pacing was associated with disability, and challenged the notion that pacing as an intervention is essential in pain management.  van Huet, Innes, & Whiteford (2009) on the other hand, found that “graduates” from a pain  management programme continued to use pacing strategies years after completing a programme, but made no comments as to the effect on outcomes although they did comment that “the application of pacing tended to be individualised, with the use of self-selected time increments and novel strategies providing structure to limit over-activity” (p. 2036).

Andrews, Strong & Meredith (2012) completed a systematic review of activity pacing in relation to avoidance, endurance and functioning.  This study found that pacing was linked to better psychological functioning but more pain and disability, but couldn’t comment on the direction of this relationship.

What about people with chronic pain, what do they think?

People with chronic pain indicate that they use pacing in studies within the qualitative literature. The problem is that these describes rarely include definitions of pacing.  van Huet, Innes and Whiteford’s study from 2009 provides quotes from graduates of pain management programmes who describe pacing as “doing things in bursts of 20 minutes and half an hour, then changing what I’m doing, then go back”; “you don’t have to do the whole lawn at once”.

From my study of people who cope well with pain, participants were selective about their use of pacing. Many of them indicated that pacing was not used when they had an important goal to achieve, while using “chunking” or breaking activities into smaller units was used from time to time – what was interesting is that pain intensity wasn’t used as an indicator for when to stop. Patients I’ve worked with in the past have described using pain intensity or fatigue as the indicator – they always stopped before their pain or fatigue “got out of hand”.

Where does this leave us?

My take in pacing as it currently stands is that there is a great deal of confusion on the matter. My personal opinion, and from both the literature and my own experience with my fibromyalgia, is that pacing can be useful in several ways – but can also be unhelpful.

Here’s how I think it can be useful:

  • When beginning to work towards an increased activity level – by setting a baseline level of activity, then titrating this level up by time or “chunk” increments rather than using pain or fatigue as a guide
  • When individuals are finding it hard to maintain activity levels over a day/week/month, pacing using time or quota as the guide can help extend activity levels over a longer period
  • When people are not sure of their symptoms and find it difficult to know what triggers an exacerbation, usually during the “making sense of pain” phase of adjusting to chronic pain
  • When engaging in routine activities that don’t need to be carried out all at once, such as mowing the lawn, doing the laundry, vacuuming the house. Things that need to be done, but might be carried out over a longer period of time than a single session. I used this approach to write my PhD using Pomodoro Technique.  I also use it when doing housework.

When might it be unhelpful?

  • When individuals continue to use pain as a guide to stopping activity, and “stop before it flares up”
  • When individuals monitor their pain intensity and seek to avoid fluctuations in pain
  • When working to a quota doesn’t help them reach goals and isn’t used to reduce distress, disability and isn’t progressed. A good example of this is the “5 minute break” I saw instituted in a data entry workplace. It was a computerised system that stopped the keyboard for five minutes with no over-ride. The “5 minute break” was obligatory for everyone every 45 minutes, there was no rationale for using it, it interrupted flow, and people HATED it. I’ve seen similar things used when people are returning to work – “work for 15 minutes then stop for 5”, maintained for weeks without being reviewed and without establishing effect.

Next steps?

Having arrived at a reasonable definition, I think it’s time to see how people use pacing in daily life, within the context of the ebb and flow of normal activities. I’d like to see an ecological momentary assessment approach to see what triggers use of pacing, how well do people return to their activities, how long is a break, and whether there is an impact on both disability and distress.

 

Andrews, Nicole E., Strong, Jenny, & Meredith, Pamela J. (2012). Activity Pacing, Avoidance, Endurance, and Associations With Patient Functioning in Chronic Pain: A Systematic Review and Meta-Analysis. Archives of Physical Medicine and Rehabilitation, 93(11), 2109-2121.e2107.

Gill, Joanna R., & Brown, Cary A. (2009). A structured review of the evidence for pacing as a chronic pain intervention. European Journal of Pain, 13(2), 214-216. doi: 10.1016/j.ejpain.2008.03.011

Jamieson-Lega, K., Berry, R., & Brown, C. A. (2013). Pacing: a concept analysis of the chronic pain intervention. Pain Research and Management, 18(4), 207-213.

McCracken, Lance, & Samuel, Victoria. (2007). The role of avoidance, pacing, and other activity patterns in chronic pain. Pain, 130(1), 119 – 125.

Murphy, S. L., Smith, D. M., & Alexander, N. B. (2008). Measuring activity pacing in women with lower-extremity osteoarthritis: a pilot study. American Journal of Occupational Therapy, 62(3), 329-334.

Nielson, Warren R. PhD, Jensen, Mark P. PhD, Karsdorp, Petra A. PhD, & Vlaeyen, Johannes W. S. PhD. (2013). Activity Pacing in Chronic Pain: Concepts, Evidence, and Future Directions. Clinical Journal of Pain, 29(5), 461-468.

van Huet, Helen, Innes, Ev, & Whiteford, Gail. (2009). Living and doing with chronic pain: Narratives of pain program participants. Disability and Rehabilitation: An International, Multidisciplinary Journal, 31(24), 2031-2040. doi: 10.3109/09638280902887784

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A new way of looking at coping, maybe?


ResearchBlogging.org
One half of knowing what you want is knowing what you must give up before you get it. ~Sidney Howard

Many are stubborn in pursuit of the path they have chosen, few in pursuit of the goal. ~Friedrich Wilhelm Nietzsche

There are few topics closer to my heart than goals.  This is partly because of my background in occupational therapy, where goals are seen as part of how we live purposeful, meaningful lives – but it’s also because they’re incredibly difficult to help others to do, yet goal setting is seen as integral to therapy.

I’ve also been considering the whole topic of coping recently.  What is coping? Which coping strategies are helpful? Is it possible to view coping efforts without also looking at the context in which they’re being used? My current conclusion is that, at least in pain management, coping is a concept that we really haven’t come to grips with.  Even the term ‘coping’ isn’t well-defined: is it the process of adapting to a situation? the outcome? or the strategy employed?

Karsdorp and Vlaeyen, in this pre-print article, consider the pursuit of goals as part of the problem of disability associated with chronic pain.  What? you say – how can going after a goal be part of the problem?  Let me explain.

For some time, we’ve recognised that along with the people who avoid activity and become deactivated and highly disabled, there is a somewhat smaller number of people who superficially seem to be coping well – they’re active, maintain going to work, keep the family going and so on, but at the same time can be highly distressed by their pain.  Their pain represents a roadblock that gets in the way of getting things done, but unlike the first group who stop doing and avoid experiencing pain, this group of people seem to almost redouble their efforts.  They just keep going.

One model looking at mood and the motivational effects of mood is the “mood as input” model.  This model proposes that “the motivational effect of goal pursuit on behavior is moderated by mood”.  It suggests there are two types of goal – short-term ‘hedonistic’ goals, and long-term ‘achievement’ goals.  Hedonistic goals are all about pleasure in the ‘now’ – that taste of chocolate, the joy of running and so on.  Achievement goals require a longer-term focus and may involve some hard work in the short-term – learning to ride a bicycle, drive a car, win a race.

In this model, the degree to which a person tends towards either type of goal is thought to be influenced by mood.  In other words, negative mood suggests to the individual trying to achieve a goal that they haven’t got there yet – leading to task persistence.  In other individuals, negative mood suggests that they’re not enjoying the goal any more, so they should stop.  Of course, most of us have a mixture of goals, both hedonistic and achievement, but there does seem to be a tendency towards one type or another in some individuals, and in this study by Karsdorp and Vlaeyen, it was hypothesised that those with a strong preference towards one or the other, would present with the most disability and pain, dependent on their level of negative affect.

Nearly 300 people with current pain present in any part of the body and with various diagnoses were recruited by newspaper for this study.  A large battery of questionnaires were completed including some related to goals, affect, catastrophising, perfectionism and pain-related disability.  Using exploratory factor analysis, a two-factor structure was obtained from the data – one factor related to pain, and ‘the rest’.  With the pain factor excluded, a further two factors were obtained – one related to a pain avoidance goal, and the other to a mood management goal.

After completing further analyses, mainly multiple regressions,  a nonlinear, U-shaped association was found between
pain-avoidance and pain and disability.  What this means is that a stronger endorsement of either pain-avoidance goals or achievement goals was related to greater pain and disability while controlling for other factors.

The other main finding from this study is to confirm previous research that has found an association between high “sense of responsibility” and achievement goals and between pain catastrophizing and the “hedonic” goal to find a solution for pain.  In other words, there are some people who push themselves to complete goals because of a high sense of responsibility and the negative emotions they experience when they don’t complete things to their satisfaction – and in this group, disability and distress is increased when their pain ‘gets in the way of’ achieving these goals.  Then there are other people who tend towards primarily trying to manage their mood, who are likely to catastrophise more about pain, and are more inclined to avoid activities that exacerbate their pain.

Now here is where I think we need to do more research.  Rather than classifying coping strategies according to ’emotion-focused’ or ‘solution-focused’, or ‘active’ vs ‘passive’, I think we need to look at the function of coping strategies as they are conducted in the pursuit of things people want to do.  It’s not helpful to see people as separate from the context of what they want to do, and where they want to do it.

This model is in its early stages, the findings were relatively weak, and there is clearly much more to be done to explore the idea of goal pursuit and coping strategies, but it is nice to see that at least one group of researchers is concerned about “why” people do things as much as “what” they do.

Karsdorp, P., & Vlaeyen, J. (2011). Goals matter: Both achievement and pain-avoidance goals are associated with pain severity and disability in patients with low back and upper extremity pain PAIN DOI: 10.1016/j.pain.2011.02.018

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Establishing routines and baselines: Recording daily schedules


ResearchBlogging.org
I don’t know about you, but I’m not the world’s best at noting down every activity I do during a day.  I get engrossed in the thing I’m doing and I often get interrupted, so it’s not very easy to record my activity moment-by-moment.  Yet, for many of us, this is something we ask for from the people we’re working with.

Luckily, there is some research on daily diary methods.  Unluckily for most of us, the best ones (ie most accurate and least intrusive) are electronic!  Useful if you’re funded for some research, less helpful if you’re trying to do this in your everyday clinical setting!  Basically, the research findings show that an electronic, automated and usually random alarm that reminds the participant to record their activity (and usually pain) then-and-there provides more complete data than a paper diary.

I’m definitely no computer programming expert (actually I don’t know anything about programming – I just use the darned things), so I don’t have access to either the technology or the programming to be able to use an electronic diary.  One day perhaps.  So I rely on paper recording.

Various diary formats are available, and it depends on what you’re wanting from the diary recordings as to the best format to use.  The main things to remember are:

  • Not everyone follows the instructions! If the effort of completing any daily recording is too high, you’ll see the person quickly scribbling in the diary in the waiting room – not quite what you hope for!
  • Keep the demands reasonable.  If you would find filling a diary of everything that you do difficult, it’s likely the person you’re working with will too.  In practical terms this means making the purpose of the diary very clear (so importance is high), and the recording process as simple as possible (so confidence that it can be done is high).
  • Cuing the recording to regular activities helps.  So it’s a good idea to anchor filling out the diary to mealtimes, for example.  Of course if the person doesn’t have regular mealtimes, this isn’t going to be easy – but just by tying the recording to specific times of the day may be sufficient.
  • Tickboxes are easier than writing words.  If you can, make the recording process as simple as possible – it’s easier to tick a box for a category of activity, for example, than to write down “Grocery shopping”.
  • Recording something draws attention to it. And is this what you’re wanting? If you ask a person to record pain intensity, and you’re really aiming to increase activity, you’re focusing the person’s attention onto pain rather than onto whether they’ve completed the activity.  I personally rarely record pain intensity, and I don’t talk much about pain intensity after the first session.  I don’t aim to alter pain intensity, so I don’t focus on it.  If I want to focus on distress or thoughts or ‘up time’ – these are what I’ll ask the person to record.

With someone who finds it difficult to record anything, the initial focus could be on simply recording how often a target behaviour occurs.  For example, I’m working with a woman who has very low confidence for managing painful flare-ups, so she does very little on high pain days.  She’s also quite low in mood and becomes highly distressed.

I’ve worked with her to identify two activities that she can do everyday – putting on makeup, having coffee with her children.  We’re only recording (with a tick!) the number of times in a week that she completes these two activities.  By focusing on an activity she wants to do, and only recording when she is successful, her attention is on what she is doing (rather than the entire list of things she’s not doing), and she gradually seeing only the successes, rather than recording her failures.  We add the total number of days in a week that she’s been successful, and increasing that running total is our goal.  I’ve limited the number of activities she’s recording – too many, and she’ll be overwhelmed and feel demoralised.  Once she’s managed these two activities consistently every day, we’ll add another activity to the list.

Another approach is to use the ‘Plan to, Did do’ diary.  In this approach, popularised by Sullivan in the Progressive Goal Attainment Programme (PGAP), the participants make a plan for the day either the night before, or in the morning.  At the end of the day, they note down their actual activity pattern beside their planned ones.  At the bottom of the sheet, some of the strategies the person used to do their activities can be listed – both the planned ones, and the ones they actually used.

And my final adaptation is to use a colour coding arrangement on a spreadsheet with one client.  To help her identify the balance of activities she carried out during each and week, she completed her daily activities in a spreadsheet, and used colours for ‘self care’, ‘family’, ‘paid work’, ‘exercise’, ‘relaxation’, ‘household management’.  By doing this she was quickly able to review her week to see how closely she’d followed her planned allocation of activities over the week.  This allowed her some flexibility within each day, with the focus on her weekly balance rather than her daily schedule.

I’ve listed some interesting papers on the use of electronic recording

Allen, K. D., Coffman, C. J., Golightly, Y. M., Stechuchak, K. M., Voils, C. I., & Keefe, F. J. Comparison of pain measures among patients with osteoarthritis. The Journal of Pain, 11(6), 522-527.

Kristiansen K, Lyngholm-Kjaerby P, & Moe C (2010). Introduction and Validation of DoloTest(®): a new health-related quality of life tool used in pain patients. Pain practice : the official journal of World Institute of Pain, 10 (5), 396-403 PMID: 20384966

Palermo, T. (2004). A randomized trial of electronic versus paper pain diaries in children: impact on compliance, accuracy, and acceptability Pain, 107 (3), 213-219 DOI: 10.1016/j.pain.2003.10.005

Schiavenato M, & Craig KD (2010). Pain assessment as a social transaction: beyond the “gold standard”. The Clinical journal of pain, 26 (8), 667-76 PMID: 20664341

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Establishing routines and baselines: Baseline recording


One of the problems novice clinicians often complain about is that journals and research papers rarely examine or provide practical approaches to daily problems that are encountered when working with people who have chronic pain.

It can take a lot of work to locate suitable approaches to things like:

  • ways to help a person who is not accepting that a cure for chronic pain is unavailable
  • ‘motivating’ a person to engage in activities that are anticipated to increase pain
  • how to develop a baseline and establish an appropriate rate of progression
  • how to establish a daily routine

It’s tempting to think that in the absence of evidence-based approaches, the clinical skills are artistic rather than scientific, but I’m not so sure about that.  Maybe it’s more a case of lack of systematic documentation about methods used, or lack of systematic examination of the ways in which these often non-sexy and very practical strategies might be improved (subtle hint to clinical researchers here!).

Anyway, there are a few approaches that I’ve collected for developing a daily routine and baseline.  To date I don’t have publications to cite in their defense, so you’ll need to join me in exploring how and whether these work to help people with chronic pain become aware of their activity patterns.  First up: Baselines

There is good evidence that simply by recording what happens on a daily basis, positive changes can begin to occur.   This is a basic behavioural approach that has been used in eating disorders, smoking cessation, exercise, diabetes blood sugar monitoring and treatments for OCD.  It’s the principle that by having feedback available about often habitual activities, we’re more aware of them, and can begin to recognise antecedents and consequences of the behaviours in question.

The process of recording what happens, when it happens, and what comes after is often called ‘establishing a baseline’.  Clinicians unfamiliar with psychological use of baselines use the term without realising that, for behaviour change, the natural variations in behaviour need to settle into some sort of pattern in order for it to be called a ‘baseline’.

Variations in activity levels, for example, may not occur over the course of a single day or even over the course of a week.   If we don’t spend the time exploring variations over time until they’ve settled into a recognisable pattern, it can seem as if there are no patterns and fluctuations occur in a totally random way.

Once a baseline is recorded, we can start to analyse the antecedent triggers or events might be (ie the things that come before a behaviour), and the consequences of each type of behaviour.  This can help us identify the type of situation the person has trouble managing effectively (or in a way that is aligned with the person’s values in the long term).

For example, we might notice that it’s often after a period of feeling relatively comfortable that the person suddenly starts increasing his/her exercise demands.  After a few days of increased exercise, he/she might suddenly stop.  It’s important to explore the reasons the person felt it was important to increase exercising – automatic thoughts about being ‘lazy’ for feeling OK but not making the most of it? or automatic thoughts that the pain has ‘gone’ and ‘I’m cured’ so it’s time to start doing things normally again? or did the person get ‘bored’ of doing the same old thing and seek something more stimulating and blow their energy budget?

There are loads of ways to record baseline activity – diaries similar to an appointment diary; recording sheets that have several things to track such as sitting time, distance walked, thoughts about situations – and for people with high-tech backgrounds, electronic diaries that ask the person to note their activity as they go just by clicking on a button on a phone or PDA or iPad.

There is some research on whether there are differences in the quality of information collected via pen and paper through the day, or whether an ‘end of day’ record is sufficient.  I think it depends on the purpose of your assessment, and it also depends on the ‘pen-and-paper-ness’ of the person you’re working with!  In other words, it’s going to be difficult for a heavy labourer with limited access to pen and paper and low literacy to complete a detailed activity diary throughout the day, but if you’re asking a busy executive who is used to carrying a PDA or iPad around with them to do the same activity electronically, it’ll probably happen.

One simple electronic method of recording ‘up-time’ is a simple pedometer.  Taped up so it can’t be opened, it can be worn for three or four days, then opened, the total number of steps recorded, divided by the number of days, and there is a rough measure of general activity level.  This can help when developing and monitoring activity level over a longer period, such as when you’re helping someone begin a walking programme, or to maintain an even level of activity each day.  Just by recording the number of steps over a fortnight or so, with a target of maintaining the same number of steps each day, the person has a target to aim for and it can act as feedback on their overall activity level and help shape their activity behaviour.

More on ways to establish routines next time!  If you find this interesting and want to know more, or have questions, don’t forget you can post a comment below, and I’ll do my best to help.  I’m also collecting some diary and other recording formats that I’ll post in my next post.

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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

D50s last shotsmall

Making self-help more helpful


ResearchBlogging.org
One of the things that appeals about self-managing chronic pain is that it doesn’t require endless appointments. If life is for living, why spend it sitting in a waiting room? (they never have up-to-date magazines anyway!)

Our problem as health providers is that we don’t know whether all our great self-help recommendations actually get done by the people we see. After all, we’re not there in the morning when they get up, or late at night when they’re trying to get to sleep! Most of us simply hope that –

  • the person is sufficiently motivated (thinks what we’re advising is both important and they’re confident they can do it)
  • can organise themselves to ‘get around to it’ before they forget what we’ve suggested
  • they’re telling us the truth when they say they’ve been doing whatever it is we’ve suggested

Quite a while ago I read about a very simple strategy to help people be more likely to carry out their exercises – and posted about it here. In that study by Christiansen,  Oettingen, Dahme, and Klinger (2010), two 30-minute sessions involving identifying the reasons for making a change (to increase physical activity), and the potential obstacles to actually doing it, were held.  For four of the obstacles identified, the participants were helped to generate solutions that would help them get around the obstacle and engage in exercise.  To do this, ‘if-then’ statements were developed.

An ‘if-then’ statement involves identifying a specific situation such as ‘when I get home from work’, then indicating the behaviour that will occurI will get my running shoes out and go for a walk.’

In the study I’ve looked at today, the same strategy was applied when delivering a self-help booklet for people with anxiety. In this study, Varley, Webb and Sheeran contacted (via email) the students and staff at a university in the UK.  People who were already being treated for anxiety were excluded, and the remaining participants (251 of them) were randomised into three groups.  All of them completed baseline Hospital Anxiety and Depression Scale (HADS, developed by Zigmond and Snaith, 1983) and the state version of the State-Trait Anxiety Inventory (STAI; Spielberger, Gorsuch, Lushene, Vagg, and Jacobs, 1983).

One group received no input, while the other two groups were asked to go to a web page where they downloaded a self-help booklet.  Both of the booklets were the same eight-page booklet containing psychoeducation, diary sheets for self-monitoring triggers and feelings, and two relaxation techniques – a breathing technique that could be used anywhere, and a longer relaxation exercises that could be used daily at home.

The experimental group, in addition to the booklet, were also asked to develop two ‘if-then’ plans – one that involved the participant identifying a specific anxiety-related symptom and to associate it with using their newly learned breathing technique. eg “If I feel my heart racing, then I will use my breathing technique to relax.” The second plan asked participants to identify when they might be able to do their deep relaxation technique into their daily routine. eg “when I get home at night, then I will do my deep relaxation.”

When the participants were reviewed eight weeks later, as expected, neither the control group nor the standard self-help group differed very much.  However, the self-help group that received the implementation intentions (if-then) supplement had significantly lower scores on the HADS and the STAI.

Interestingly, the experimental group also thought the booklet was more ‘user-friendly, used the relaxation techniques more frequently, were better at detecting the triggers of their anxiety, and experienced the benefits of using the relaxation techniques.’ So basically, quite an effective and yet simple strategy!

For readers with a critical eye for statistics and methodology, this study is a nice example of the use of multiple statistical methods to determine outcomes – a combination of ANOVA, Sheffe post hoc tests, multivariate analysis, correlations, and bootstrapping to test direct effects – and what’s more, they also reviewed ‘caseness’, or whether the changes that were statistically significant were also clinically significant.  This was achieved through identifying participants with scores over 11 on the HADS at pre- and post-testing.

OK, so lovely for people with anxiety: how might this apply in self-management of pain?

Well we’ve already had one demonstration of this method on exercise for people who have chronic pain (Christiansen and colleagues), and I wonder if it might not make an effective addition for people who have high pain-related anxiety.

One of the effects of anxiety about pain is to reduce how readily people can bring coping strategies to mind (go here for some of the references to the Pain Anxiety Symptoms Scale).  If we identify people who have trouble thinking straight when they’re sore, we can help them generate specific ‘if-then’ statements to help them get by.  Here’s an example:

Jenny gets worried when her pain starts to increase, especially when she’s busy at work.  Her therapist helps her identify the ‘early warning signs’ that signify the potential for difficulty coping.  These are:

  • several deadlines occurring together
  • jaw tightening and frowning
  • multiple interruptions

She chooses one of these, and with her therapist, identifies several strategies:

  • breathe and let go
  • stand up and stretch
  • assertively setting a limit

She then constructs an “if-then” statement like this:

  • “If I have several deadlines occurring together, then I will stand up and stretch”

She writes this down and puts a copy of it beside her computer at work.

The good things about this strategy are that:

  • it’s generated by the person (who therefore gets involved in identifying personally relevant cues and solutions);
  • it’s brief (so easy to remember!);
  • it does the thinking and problem solving beforehand (when thinking can be much more creative, and the situation may even be pre-empted);
  • it involves a different behaviour (it’s an action, which is much easier than a cognitive strategy when anxiety is elevated)

Give it a go with your patients – and see whether it’s something they might find helpful.  Or even use it yourself!

Varley R, Webb TL, & Sheeran P (2011). Making self-help more helpful: a randomized controlled trial of the impact of augmenting self-help materials with implementation intentions on promoting the effective self-management of anxiety symptoms. Journal of consulting and clinical psychology, 79 (1), 123-8 PMID: 21171737

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?

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2010 in review


The stats helper monkeys at WordPress.com mulled over how this blog did in 2010, and here’s a high level summary of its overall blog health:

Healthy blog!

The Blog-Health-o-Meter™ reads Wow.

Crunchy numbers

Featured image

The Louvre Museum has 8.5 million visitors per year. This blog was viewed about 210,000 times in 2010. If it were an exhibit at The Louvre Museum, it would take 9 days for that many people to see it.

 

In 2010, there were 194 new posts, growing the total archive of this blog to 828 posts. There were 157 pictures uploaded, taking up a total of 38mb. That’s about 3 pictures per week.

The busiest day of the year was April 28th with 1,097 views. The most popular post that day was If you’re not asleep, get out of bed!.

Where did they come from?

The top referring sites in 2010 were researchblogging.org, facebook.com, twitter.com, Google Reader, and forum.psychlinks.ca.

Some visitors came searching, mostly for cognitive behavioral therapy worksheets, coffee cup, cbt worksheets, coffee, and possum.

Attractions in 2010

These are the posts and pages that got the most views in 2010.

1

If you’re not asleep, get out of bed! April 2010
1 comment

2

Some awesome CBT worksheets and resources May 2009
1 comment

3

Curiousities September 2008
1 comment

4

Useful resources: handouts on basic coping skills June 2008
1 comment

5

If you’re new to pain management October 2008
1 comment

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Resilience, catastrophising and positive emotions


ResearchBlogging.org

Catastrophising, or thinking the worst, is one of those psychological factors that we know influences distress and disability in people with chronic pain. It’s quite a common phenomenon, and sometimes can stand us in good stead – after all, if we can think of the worst things that can happen, then plan to avert those possible disasters, then life will be sweet, yes? ermmmm – no, as a matter of fact.  Catastrophising can actually function to narrow our thinking down, reducing the range of options we can come up with to manage situations, and it can also function to focus us on things that haven’t worked out while at the same time minimising our appreciation of things that are working well.

In chronic pain, catastrophising is often an outcome to measure – the thought is that if people learn to think more positively about what might happen when their pain is bad, they’ll be in a better position to cope with their pain. This is thought to reduce the level of distress by being more realistic about the potential for negative things to happen.  People who can face difficult times with a greater sense of the real level of threat can harness resources more effectively and often avert negative situations before they happen.

There are a number of interesting theories about resilience and how people cope more positively with life’s situations.  One of these theories is the ‘broaden and build’ theory first developed by Fredrickson, (2001). In the ‘broaden’ part of this theory, it’s thought that positive emotions serve to broaden what we attend to and think about, and in doing so, widen the range of things we consider and think about so that we can think of more options than we consider when we’re under stress. This is thought to help us cope better with stress because we can think of a greater range of things that might work to help us out of that particular difficulty.

Some of the other relevant discussions about resilience and positive emotions suggests that while resilience can be thought of as a trait, or a fairly stable ‘way of viewing the world’, one aspect of reslience that is important is the ability to generate and have positive emotions. Maybe having positive emotions is just a by-produce of resilience, or maybe it’s that if we can remain positive despite stressors being present, then we will be able to be resilient – but it’s certainly evident that when people are able to find something positive in a difficult situation, or if they can find something funny in their situation or even find something to comfort and therefore increase positive mood, they seem to cope better than people who ‘think the worst’ and then remain focused on these negative aspects of their situation.

How does this fit with catastrophising and chronic pain?

Well, in an interesting ‘daily process study’ by Ong, Zautra and Reid, people who were being seen for their chronic pain were asked to keep a daily diary and record catastrophising, pain intensity, and both positive and negative emotions over a period of 14 days. At the beginning of the study they were asked to complete a set of questionnaires including a measure of resilience, neuroticism, and the usual range of demographic details.

The aim of the study was to see how resilience characteristics related to catastrophising, positive and negative emotions, and pain. There were four main questions: (1) Is there a gender difference in catastrophising? (2) Is there a relationship between the level of resilience and the changes experienced in pain catastrophising? (3) Do positive emotions reduce pain catastrophising? and (4) Is the relationship between resilience and pain catastrophising influenced by positive emotion?

What did they discover?

Well, the first question about whether there is a relationship between gender and catastrophising found that yes, women in this study of 95 people, were more likely to catastrophise. Why this is, we don’t know. More research please!

The second question about resilience and catastrophising found that people who were identified as more resilient (using the scales in this study, anyway) were less likely to score as highly on the measure of catastrophising as people who were found to be less resilient. So it seems that if you have that tendency to bounce back, you’re also less likely to think the worst in a stressful situation. Which one comes first, we are not quite as certain.

The third question about whether positive emotions could influence catastrophising about pain also found that yes, if these participants felt positive on one day, they’d tend to score less on catastrophising the following day. (I guess you can see that maybe the reverse also applied – so it could easily become a downward spiral of feeling low in mood, then the next day, tending to think the worst – which is probably only going to increase the likelihood of feeling even lower that subsequent day!).

And lucky last, the question about whether positive emotions influenced the relationship between resilience and catastrophising (ie mediated that relationship) was also tested. In this rather complex set of calculations, it was found that the relationship between being generally resilient and the degree of catastrophising experienced on a daily basis was mediated by positive emotions. So if you’re generally resilient, but have a bad day, this can influence your catastrophising, but not to the same extent as if you’re generally less resilient, when it can lead to a really big increase in catastrophising.

What does this mean for us as clinicians?
The first thing that strikes me when I look at this is that if we can help people identify and pursue things that make them feel more positive, and they do this on a daily basis, it might help them be more able to think more realistically about their situation. So rather than freaking out about their pain, and being really concerned that their pain is going to overwhelm them, people who have had a couple of positive experiences through the day might be more likely to think that their pain is bothering them, but they can deal with it.

This leads me to consider the many ways in which we can help people generate positive events in their lives. Not everything we suggest to people needs to involve ‘hard work’! It’s actually OK to throw a ball for the dog and laugh at her antics. It’s fine to get out an old comedy movie and watch it for laughs. There could be merit in ‘laughing meditation’ where people are encouraged just to start laughing – it’s almost impossible to resist laughing when you see someone else chuckling away! Maybe even get people to look at my Friday Funnies? – oh, maybe not.

The next thing that comes to mind is that while women tend to be more likely to catastrophise, it was also found that positive emotions had a greater effect on catastrophising in women. The authors of this paper suggest that maybe women have more trouble regulating emotions (don’t talk to our menfolk will you? They’d only agree…sigh…), but add that perhaps a greater emphasis on using ways to increase positive emotions will pay dividends for women.

We have a long way to go to really understand what helps people look on the bright side or have bounce back when they experience life’s challenges. At least one thing we can draw from this study is that by increasing positive emotions there is a reasonable chance we can help people reduce their degree of catastrophising about their pain. I’ll post more about how to increase positive emotions shortly – but this is one area that is an especially important one for clinicians working in chronic pain, and especially for occupational therapists who are ‘expert’ in occupations that people enjoy. Having positive emotions seems to generate more options for coping, and increases the sense that life can go on – and this has got to be good for the people we work with.

Ong, A., Zautra, A., & Reid, M. (2010). Psychological resilience predicts decreases in pain catastrophizing through positive emotions. Psychology and Aging, 25 (3), 516-523 DOI: 10.1037/a0019384



Fredrickson, B. L. (2001). The role of positive emotions in positive psychology: The broaden-and-build theory of positive emotions. American Psychologist, 56, 218–226. doi:10.1037/0003-066X.56.3.218