Motivation

Who are you? The effect of pain on self


My client, let’s call him Al, is a plumber. Or was a plumber. He sees himself as a hard-working, reliable guy who takes pride in doing a job once, doing it well, and not stopping until the job is finished. He’s worked for most of his adult life in his own plumbing business, something he’s very proud of. He’s supported his partner while she’s been at home caring for their two now adolescent boys. In his spare time he goes fishing, loves the outdoors and likes to wander the hills whenever he can.

Al isn’t very happy. He’s been told that his back pain, which he’s had for six months now, is not likely to go away. He’s been having treatments from physiotherapy, had a return to work programme developed by an occupational therapist, tried medications and injections but nothing has taken his pain away. He’s slowly stopped seeing his mates, isn’t sleeping well, hasn’t been out fishing in months, and he’s even had trouble keeping from shouting at his boys.

Al doesn’t sound all that different from many of the men I’ve seen in pain management. Some people call him “unmotivated” because he’s stopped thinking about goals for the future, and does his exercises in a half-hearted sort of way. He doesn’t always attend his appointments. It’s hard to know whether he’s actually doing his home exercise programme. A far cry from the “hard-working, reliable” man who runs his own business.

What’s going on? We could say he’s depressed, and maybe he is. But more importantly, why is he depressed? He doesn’t describe his pain as anything more than a 5/10 where 10 is the most extreme pain he can imagine. He’s still getting an income from his worker’s compensation, he’s still in a loving relationship and in their own home. But he’s not a happy man.

We’ve all met an Al, I’m sure. Superficially he looks fine, but a throwaway comment nails it: “I’m just not myself any more, I want things to be normal”.

Self-concept

All of us have an idea of who we are. A self-concept is a set of representations about who we are, what we do, how we do it, and why we do it. We all have several self-concepts – the “actual” self, the “ideal” self (who we would like to be), the “ought” self (the person others think we should be), the “feared” self (the person we really don’t want to be) and so on (Higgins, 1999; Markus & Nurius, 1986). Our sense of self is based on a collection of memories, a pattern of behaviours that we’ve developed and continue to develop as we aim to be the person we want to be.  Our sense of self guides our choices and the way we do things.

What happens when we can’t do things the way we think we “should”, or the way our sense of self would guide us to? Let’s think about this for a minute.

Al is used to getting up early in the morning, usually about 6.00, so he can get out to the site he’s working on that day and begin work by about 7.30. He prides himself on being at work, ready to go, before his apprentice gets there. He’s always organised, got his gear ready and in the truck with a cup of tea all sorted so he can plan his day.

Since he developed his back pain, Al’s had trouble getting out of bed before 8.00. He’s always tired. He’s not sleeping. He’s the last one in the house to get up, and he can’t even get to the work site until 9.00 because his body is sore and he can’t seem to wake up. He’s getting picked up by his apprentice who keeps giving him grief over not having his gear ready in time. He’s not the man he used to be, in fact, he’s become the man he swore he’d never be, a compensation bludger. He doesn’t like who he’s become. He feels lazy and useless.

Achieving self-coherence by re-occupying self

One of the neglected aspects of pain management is how to help someone deal with the changes to his or her sense of self. Life becomes chaotic when assumptions we make about the world no longer apply. The main concern of someone who is learning to deal with chronic pain is how to make life and self make sense again, to regain some coherence.  When they successfully solve this problem, it’s like all the various aspects of “self” have been reassembled. This is usually a new “self”, one that incorporates pain and the things that need to be done to accommodate pain while still expressing important aspects of “who” he or she is.

The process of learning to live comfortably with a new self is, I believe, a process of re-occupying self. Making a new self that feels recognisably “me”, doing the things that make “me” feel like myself, including some of “my” usual standards and attitudes and interests.

Yet what do we so often do when we doing pain management? We tell people like Al to “relax” and “pace” (Al learned as a child that you don’t stop until the job is done). We tell him he needs to move in certain ways (as a plumber? under buildings, in roof cavities, hauling gear out of the truck, carrying it over building sites). We suggest he needs to not do some things (work for the whole day without a break), but ask him to do other things (carry out a set of exercises three times a day). We say he needs to be back at work, but he doesn’t feel he’s pulling his weight.

What can we do?

I think we need to take some time to understand Al and what’s important to him. Not just the occupations (activities) but also the way he does them, and why he does them. How do they contribute to his sense of self? And then we need to work with him to give himself “permission” to do things differently – for a while. It’s like putting on a temporary “self”, a “rehabilitation” self. We can revisit this “rehabilitation” self as time goes on, and help him identify important values and occupations so he can begin to feel more like himself. Perhaps help him develop a new self that lets go of the old “normal” but includes some of the most important values expressed differently. I call this flexibly persisting – as Antony Robbins says, “staying committed to your decisions, but staying flexible in your approach”.

BTW – if you’d like to help me share this concept, you can! The idea of re-occupying self emerged from my PhD studies, and I want to present this at the Pain Science in Motion Colloquium in Brussels at the end of March. If you’d like to help me raise the airfare to get there (and back!), go to Give a Little and my page “Live well with pain”. Every little bit counts! I’ve had some wonderful people help me get almost half the money I need – will you help me get the rest? Thank you!!

 

Beekman, Claire E., Axtell, Lois, Noland, Kathy S., & West, Jaime Y. (1985). Self-concept: An outcome of a program for spinal pain. Pain, 22(1), 59-66. doi: http://dx.doi.org/10.1016/0304-3959%2885%2990148-4

Charmaz, K. (2002). The self as habit: The reconstruction of self in chronic illness. Occupational Therapy Journal of Research, 22(Suppl1), 31S-41S. doi: dx.doi.org/10.1177/15394492020220S105

Hellstrom, Christina. (2001). Temporal dimensions of the self-concept: Entrapped and possible selves in chronic pain. Psychology & Health, 16(1), 111-124. doi: http://dx.doi.org/10.1080/08870440108405493

Higgins, E. Tory. (1999). Self-discrepency: A theory relating self and affect The self in social psychology (pp. 150-181). New York, NY: Psychology Press; US.

Markus, Hazel, & Nurius, Paula. (1986). Possible Selves. American Psychologist, 41(9), 954-969. doi: dx.doi.org/10.1037//0003-066X.41.9.954

Goals? I loathe them: What to do instead


I dislike that acronym “SMART” goals. I can never decide whether it’s meant to mean “Specific, measurable, achievable, realistic and time-bound” or “specific, manageable, active, realistic and timed” And if it’s either of those, what’s the difference between achievable and realistic? Or is it meant to be “relevant”?

In previous posts I’ve established good reasons to have a focus for therapy. Unless the focus is something valued by the client, it’s either unlikely to get done or it’s not their goal and they’re going along with it to keep you happy. Goals, targets or focus are useful, and the logic goes that unless you have them you won’t know where you’re going or when you’ve got there.

I’m not going to argue against the idea of having a focus to therapy. I just think there are risks in having goals, like some sort of checklist that says “If you achieve this, you’re all good”.

Seriously, that doesn’t work in real life. That’s the same kind of logic that says “if I just buy enough things I’ll be happy”, “if I just earn a bit more I’ll be happy”. While there’s a bottom line below which it’s hard to think beyond survival, above that line, having stuff, and even doing things as an end in themselves doesn’t fulfill for long.

What gives forward momentum, enrichment, fulfillment and can’t be ticked off like some shopping list is recognising that life is actually a whole series of actions and events that, when we think back on them, make up a good life. The richer events and experiences and actions feel good and fulfilling. The empty routine and humdrum things feel deadly dull and empty.

When I think about the purpose of therapy my focus is helping people to live the kind of life they value, doing the things they believe are important. Given I don’t want to be a long-term feature in a client’s life (for all I love them, I’d rather they were doing it themselves), my focus is on helping them work out what makes a rich, fulfilled life they can look back on and feel satisfied. My job is to help them develop skills and strategies to carry out the actions needed to live a life aligned with what they value.

Let me unpack this a little.

Many people I see place value on being a good parent, a loving partner, a reliable employee. When I see them, their pain has interfered with doing the things they believe demonstrate “being a good parent” or “being reliable”. Pain has moved in to their lives, and come and sat on their laps right in front of their face so that all they can see is pain.  If I ask someone in this state to “set goals” they laugh, rather sarcastically sometimes, and say they don’t have goals, they can’t think of anything and what’s the point anyway. Perhaps not in those words, but the meaning is clear.

Instead, I ask them “what would you be doing if your pain was less of a problem for you?” Sometimes I’ll even hand over a plastic fairy wand I have, and suggest they dream a little. It’s then that the passion takes over – they’ll say “I’d be out working, having fun with my friends, caring for my family” – and the list goes on! If I stopped there, though, I’d be holding a tantalising dream just out of reach, which is cruel, so I don’t. Instead I ask why these things are important.

That’s how I find out that “family is everything”, “I just love creating”, “I need my friends”.

Then I switch tack for a moment and ask them “How well is what you’re doing to deal with your pain right now working to help you be the kind of person for whom family is everything? How well is what you’re doing with you pain helping you create?”

The reason for this tactic is to help generate what Acceptance and Commitment therapists (ACT) call “creative hopelessness“. Because motivation to change comes from inside – that it’s important enough, and the person is confident that change can happen.

I then suggest two things: 

  1. Is keeping pain happy more important than family ?(and yes, I know I’m personalising and objectifying pain here, and yes it’s an experience not a thing, but it works OK!)
  2. What would happen if you made a little room for pain to be there while you’re doing things that contribute to you being the kind of parent you want to be?

What I mean by this last statement is that pain can interfere with doing that things that help you feel you’re being a good parent. And that can lead to either completely abandoning those activities, or doing them while clutching resentfully to “the pain that interferes”. What if you attended to the value or importance of being the kind of person who is a good parent instead of focusing on the irritation, frustration and anger of having to bring pain along for the ride?

  • For many people, the things they believe contribute to “being a good parent” far exceed what they can currently achieve. So they give up and get demoralised. They both have their pain AND they don’t manage the very things they most value.

Now it’s here that I could begin to “set goals” and suggest we work towards them using all the traditional elements of goal setting. And that probably has excellent value. But here’s the catch: often we hold very strong internal rules about how these things should be done so that unless we can do them exactly the way we think they should be done, we’re not satisfied. And for many people this fails to recognise that as time goes on, life too goes on, and we change the way we do things to accommodate new habits or capabilities. So I try to begin a process of developing flexibility – and using the values a person identifies as a compass rather than a checklist.

What would happen if we thought a little about the range of things people might do to convey “being a good parent”? Maybe it would mean going to the children’s sports games and being a spectator. Maybe it would mean making lunches, helping to do homework. Maybe it would include listening while a kid tells you about his or her day. Many of these things can be done with pain present. Many might require altering how they’re done to accommodate having pain present but provided that they express the underlying value of being a good parent, can be fulfilling.

What’s important is less about the what a person does, and a whole lot more about why and how they do it.  When “being a good parent” becomes the direction we live (because we can never tick the box that says “being a good parent” is complete), then we focus on why and how we do it. Attention goes away from “but pain stops me”, and towards discovering all the ways “being a good parent” can be lived.

Often it’s through doing this that people seek new coping strategies so they can extend what they do. People may “set goals” or future actions they want to take but instead of feeling frustrated and dissatisfied, they begin to to take actions that bring them closer and closer to living the life they want to live. And that, my friends, is what I think “goal setting” is about.

This festive season is a good time to consider what’s important in your life. What actions are you taking to live a value-filled life?

Stepping out of the glue: How to generate goals


Chronic pain has been called one of the “most powerful and insidious disruptors” of routine, habit and wellbeing (Karoly, Okun, Enders & Tennen, 2014).  When a person experiences pain, a whole range of mechanisms come into play and work together to use thinking and processing space, and especially those areas we use when we’re developing and achieving goals.  When people are first trying to make sense of their situation, they can find it hard to think about future goals and plans, and instead focus on trying to solve the problem of pain – many people call this time like being in limbo (McGowan, Luker, Creed & Chew-Graham, 2007).

It’s not surprising, then, that when clinicians begin to work with someone who has had pain for a very long time, it can be very difficult for them to think of a “goal”. After all, not everyone sets goals anyway (I heard somewhere that it’s about 3% of people – but I can’t find the research to support it). But in pain management, funders often ask clinicians to work with the client to “set goals” for therapy from the first day as a way to ensure a client-centred programme, increase motivation, and monitor outcomes. This can be a problem in a couple of ways: first of all, if the person doesn’t have goals because they’ve been in “limbo land” for a long time, and feel pretty demoralised or their goal relates to “getting rid of the pain”; secondly, if the person has vague ideas that are difficult to set into the typical “SMART” formula (incidentally, I really don’t like that acronym!); thirdly, if the person doesn’t have strong ideas about what they want from therapy, the clinician can set the goals for them, and perhaps not those the client is really all that interested in; and finally, it’s hard to set goals without having spent some time listening to and collaborating with the client.

Pain can be experienced as a major obstacle to motivation for setting goals. Negative mood associated with pain can reduce motivation to think ahead, to dream. Morning pain in particular can make it more difficult to want to do things, unless those activities are important, there are relatively structured ways to pursue them, and they don’t need much planning.  This can influence whether a person gets out of bed to go to work, or the gym, or take the kids to school. In a daily diary study, Karoly, Okun, Mooris, Enders and Tennen (2014) found that people with relatively high overall pain over a two-week period, but not necessarily just in the morning, and who have chosen to stay working, often also carry out their “lifestyle” goals in the afternoon. They suggest this could be because goals that are further out in time, and the positive feelings associated with achieving work goals keep them motivated. But they also found that even then, on the days people had more than their usual pain in the morning, they were less inclined to do as much.

The implication of this finding by Karoly and colleagues is that people who experience a “high pain” morning might need some reminders of the pleasure they get when they achieve goals – perhaps to pay attending to people and places that support their goal achievement. Helping people develop goal planning skills might also be useful – do the thinking when you’re feeling a bit more positive and can see beyond “now”, then when pain is higher, the cognitive demanding work is already done and the reminders help to generate positive emotions to encourage doing them.

OK, so we know some ways of helping people keep motivated, but what do we do to help people set them in the first place?

People are motivated by both push and pull factors. We want to move towards things we experience as good, and away from things we don’t enjoy. When pain is present, not only does it become hard to think straight, it doesn’t feel like it will ever change. So we need to help people dream a little. One way I do this is ask “What would you be doing if pain wasn’t such a problem for you?” Note that I’m not saying pain isn’t there – but that it’s less of a problem. Sometimes I’ll use a plastic magic wand and hand it to the person, asking them to dream a little. Other times I’ll add in “What gives you joy and pleasure? What makes you lose your sense of time and place? What gives you a sense of satisfaction when it’s done?”

These questions begin to identify activities in which a person might experience “flow” – Mihaly Czikszentmihalyi.

Another way is to ask the person what they need to, or want to do, perhaps using the occupational therapy broad groups of “productivity/work”, “leisure/fun”, and “self care” as prompts.

I’ve also found that by asking “what’s important in your life” can be a good way to generate personal goals. Importance indicates that the person places value on it. Values are important and lasting beliefs or ideals shared by people about what is good or bad and desirable or undesirable. Values underpin ACT (Acceptance and Commitment Therapy), because instead of setting goals, which can be achieved, values are like a compass – things we do (actions) allow us to move closer towards important values, and we never completely achieve them. They’re directional and aspirational, and allow us to do difficult things that have short-term negative consequences, just so we can move towards a better long-term consequence (van Huet, Innes & Stancliffe, 2013).

How can you use this in therapy?

Well, if a person really values family, and being a good Dad, anything that Dad does to enable him to be a better Dad will be motivational. So you can ask “What could you do today that would take you one step closer to being a great Dad?” And use whatever that might be as the foundation for a goal. Then you can go on and use all the other great goal-setting strategies like specific, measurable, achievable, relevant, and so on.

This doesn’t mean that doing that thing will be easy – far from it! But it will make achieving it more relevant, powerful and motivating. Working with the challenges is why you are a therapist.

 

Karoly, Paul, Okun, Morris A., Enders, Craig, & Tennen, Howard. (2014). Effects of Pain Intensity on Goal Schemas and Goal Pursuit: A Daily Diary Study. Health Psychology, 33(9), 968-976.

McGowan, Linda, Luker, Karen, Creed, Francis, & Chew-Graham, Carolyn A. (2007). ‘How do you explain a pain that can’t be seen?’: The narratives of women with chronic pelvic pain and their disengagement with the diagnostic cycle. British Journal of Health Psychology, 12(2), 261-274.

van Huet, Helen, Innes, Ev, & Stancliffe, Roger. (2013). Occupational therapists perspectives of factors influencing chronic pain management. Australian Occupational Therapy Journal, 60(1), 56-65.

What matters: patient-determined outcomes and clinician/researcher outcomes


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It’s easy to forget, sometimes, that when we choose an outcome measure, we need to seriously consider who will use the measures in the end.  Of course, I am assuming that we’re all using outcome measures – we are, aren’t we?  If anyone isn’t, shame on you – how on earth will you establish whether what you’re doing is having an effect? And don’t come at me with “oh but I just ask them” because I don’t want to have to list all the response bias, demand characteristics, and lack of consistency problems again. kthx.

Anyway, where was I? That’s right, the end-user in outcome measures.  Over the past few years, interest has risen in identifying the range of outcome measures that can be/should be used in research of treatments for chronic pain.  The IMMPACT project has worked to identify measures that researchers and clinicians agree are important – and more recently used focus groups to identify domains that people with pain thought were important.  I’ve blogged about this before here.

People with pain thought seven out of 19 outcome domains: enjoyment of life, fatigue, emotional wellbeing, physical activities, staying asleep at night, weakness, and difficulty concentrating, were so important they rated them at least 8 out of 10 (where 10 = extremely important).  Notably, these are all “subjective”, in other words, these are aspects of wellbeing that can’t be measured directly.

Beale, Cella and Williams (2011) were curious to see how well these domains were measured in 60 randomised controlled trials of pain rehabilitation.  These studies were included in a recent Cochrane review of psychological therapies for managing chronic pain (Eccleston, Williams & Morely, 2009).

Mapping the outcome measures used in each trial against the domains above, they found that physical activities were assessed in 93.8% of the 60 trials (over 5800 participants) and emotional well being was measured in 83.1% of trials.  Otherwise, the measurement of domains that people with pain thought were important was pretty poor.

None of the trials measured these important areas: difficulty concentrating, difficulty remembering things, hobbies, planning activities, and sex life; while only a few measured these domains : enjoyment of life, fatigue, weakness, staying asleep, falling asleep, relationship with family and friends, and taking care of family members.

The two most important areas to patients, enjoyment of life and fatigue, were not measured, or not measured well.

This result doesn’t entirely surprise me.  The practice of routinely measuring outcomes is still not well-established without (usually) some external agency requiring it.  In NZ, it’s often our national injury compensation agency that requires outcome measurement – as a result, outcomes are often those that have meaning to that agency.  Things like ability to return to work, mood, physical disability, and some cognitive variables such as catastrophising and fear of movement are often required.

Many medical practitioners question the practice of measuring outcomes at all – one doctor I know said “why can’t we just ask them?”  Hence my little grumble earlier in this piece.  Others want to limit the number of questions and pick and choose individual statements from psychometrically validated measures, like a pick and mix bag of sweets.  And it’s been my experience that some managers are loathe to spend time and money on collecting outcome measures “unless they’re needed by ACC”.

Why include outcomes that matter to patients?

Well, mainly because it’s their wellbeing clinicians are supposed to have at heart, isn’t it? It’s also about developing a greater ongoing relationship or dialogue between the person with pain and their treatment team.  By developing and including patient-centred measures, it’s far easier to have that conversation with the person who has pain.  The person can actively decide whether the treatment is helping – and if the person understands what’s in it for them, adherence to treatment is likely to be improved.

Where does this leave us?

One conclusion the authors of this study came to was that we simply don’t have a good range of outcome measures to reflect the areas patients think are important.  Actually, given the quite limited number of studies identifying what patients do think is important, maybe we haven’t got a good handle on the range of areas first!

I suggest we need to spend a little time considering patient-centred outcomes.  Maybe this is in the form of more patient focus groups talking about what is important to them.  Maybe it’s about using patient-derived measures like Goal Attainment Scaling.  Maybe it’s about working harder to develop measures that tap into things like quality of life.

Beale, M., Cella, M., & de C. Williams, A. (2011). Comparing patients’ and clinician-researchers’ outcome choice for psychological treatment of chronic pain PAIN DOI: 10.1016/j.pain.2011.06.007

Eccleston C, Williams ACdeC, Morley S. Psychological therapies for the
management of chronic pain (excluding headache) in adults. Cochrane
Database Syst Rev 2009;2:CD007407.

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

Establishing routines and baselines: Recording daily schedules


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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

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.

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

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?

Friday Meditation


As you know, Friday is about getting ready for the weekend.  Today I decided not to pass on some of the horrendous puns shared with me by one of my esteemed colleagues (although I may drop just one in because I can!).  Instead I thought this poem is a chance to consider being ‘in the now’, something clinicians working in pain management really need.

Salutation To The Dawn

Look to this day!

For it is life, the very life of life.

In its brief course

Lie all the verities and realities of your existence:

The bliss of growth,

The glory of action,

The splendor of achievement,

For yesterday is but a dream

And tomorrow is just a vision,

And today well lived makes every yesterday a dream of happiness

And every tomorrow a vision of hope.

Look well, therefore to this day!

Such is the salutation to the dawn.

Kalidasa

 

Oh, a pun?  As you read this, remember I have to work with the person who passed it on…sigh…

She was only a whiskey maker, but he loved her still.

A rubber band pistol was confiscated from algebra class, because it
was a weapon of math disruption.

No matter how much you push the envelope, it’ll still be
stationery.

A dog gave birth to puppies near the road and was arrested for
littering.

I wondered why the baseball kept getting bigger.  Then it hit me.

Two fish swim into a concrete wall.  One turns to the other and says
‘Dam!’