family

Family and friends matter


I’m going back to my series on behavioural approaches to pain management (it’s a slow process!). For the first two go here and here. Now I want to talk about the impact of family and friends on people living with pain.

The people we live with are so influential on what we do and believe about pain. It’s our parents who first taught us the relationship between the word “pain” and the experience we know as pain. It’s our parents and family who responded when we cried, who kissed it better (or not), who told us to “harden up” (or not), who took us to the doctor (or not), who showed us, through their own behaviour, how to “do pain.”

There’s a good deal of research investigating the impact of friends and family on pain behaviour (remember the distinction I make between pain-the-experience and pain behaviour or what we do when we’re sore? click). For instance, a systematic review by Snippen, de Vries, van der Burg-Vermeulen, Hagedoorn and Brouwer (2019) looked at people with chronic diseases, and the attitudes and beliefs of significant others. They found that “positive and encouraging attitudes regarding work participation, encouragement and motivating behaviour and open communication with patients” were facilitators for work participation while “positive attitudes towards sickness absence and advise, encouragement or pressure to refrain from work” were barriers to returning to work.

In another study, Burns, Post, Smith, Porter and colleagues (2019) observed spouse dyads behaviour after arguing then the person with pain undergoing a pain induction task. Spouses that believed that the patient’s pain was a mystery were significantly more likely to be perceived by the patient as giving critical/invalidating responses toward the patient during the discussion; while spouse perceptions that the patient’s pain was a mystery were related to internal and negative attributions spouses made while observing patients display pain behaviors during the structured pain behavior task (p. 1176).

In another study, this one a daily diary study with people living with osteoarthritis in their knee, found that on days when the person with pain reported more thinking the worst, their spouses were more unhappy during the day. And on the days when the partner was more irritated with the person living with pain, that person reported more thinking the worst the next morning. The link? The people with pain who were thinking the worst were also more grumpy through the day, and this was rubbing off on their partner. (Martier, Zhaoyang, Marini, Nah & Darnell, 2019).

Makes sense, doesn’t it? That when we see our loved one demonstrate that they’re sore, and they’re grumpy – and if we’re not sure they’re for real – we might be less supportive as partners than if we think their pain is for real. And over time the pattern of being sympathetic might wear thin – in fact, Chris Main (psychologist) describes a pattern of initial solicitous behaviour (the “there, there dear, I’ll fetch you a cup of tea”), then resentment (“surely you’ve recovered now?”), then anger and punitive behaviour (ignoring the person, getting irritated with them), but then feeling guilty about this (“OMG I know, it’s not your fault and I’ve been so mean”), returning to being solicitous – until the next time the partner feels fed up.

What does this mean for a behavioural approach?

Well, it’s not surprising that if one of the partners thinks the other “should be well now”, they’re likely to be unsympathetic as we begin changing the person’s behaviour. Often we’re attempting to help someone be consistent with their daily activities, and this can often begin by reducing how much should be attempted so the person can “do no more on a good day, and do no less on a bad day.”

And if the partner is really worried about the person with pain, and afraid that doing more is going to increase pain and prolong disability, it’s also not surprising that the partner is likely to be worried about us asking the person to do things differently (especially exercise!).

And don’t forget that during this time, both partners are probably trying to keep some semblance of normal going. They still have the usual household tasks to get done, to pay the bills, to get the kids to and from school, to keep in touch with extended family and friends and so on.

It’s stressful. And we add to the burden when we ask the person to do something different, whether this be doing exercises, using a mindfulness or relaxation technique, perhaps go to various appointments all around town…and if we don’t include the impact of what we expect on the partner, we’re possibly not going to have “the team” on board with the rehabilitation programme.

The very best option is to ask the person’s partner to come in to at least one of our treatment sessions, so we can spend some time talking about what we’re asking the person with pain to do, and getting an indication from the partner about their willingness to follow the programme. The next best option is to write the programme down, and include “things family can do to help” – listing the kinds of things family and friends can do (and what they should avoid doing).

You see, people we see for help never live in a vacuum. They always have a context of friends, family, home, responsibilities, expectations from them, expectations for the work we do. Forgetting about this and expecting a good result fails to recognise the embedded nature of life. Contextual factors are important, no person is an island.

Burns, J. W., Post, K. M., Smith, D. A., Porter, L. S., Buvanendran, A., Fras, A. M., & Keefe, F. J. (2019). Spouse and patient beliefs and perceptions about chronic pain: effects on couple interactions and patient pain behavior. The Journal of Pain, 20(10), 1176-1186.

Martire, L. M., Zhaoyang, R., Marini, C. M., Nah, S., & Darnall, B. D. (2019). Daily and bidirectional linkages between pain catastrophizing and spouse responses. Pain, 160(12), 2841.

Snippen, N. C., de Vries, H. J., van der Burg-Vermeulen, S. J., Hagedoorn, M., & Brouwer, S. (2019). Influence of significant others on work participation of individuals with chronic diseases: a systematic review. BMJ Open, 9(1), e021742. doi: 10.1136/bmjopen-2018-021742

Musing on “the social” in pain rehabilitation


What do we think about when we consider “the social” as a factor in pain rehabilitation? Do we think of socioeconomic status? Maybe employment status? Perhaps societal attitudes towards pain and recovery? Do we ask if the person has someone they trust in their life? Maybe we even discuss how a relationship is going, whether the person sees their friends and family?

Have we forgotten that possibly the most potent influences on pain behaviour are the people around the person we’re seeing?

It will be no surprise to anyone reading my work over the past 10 or more years (yes, really! it HAS been that long!) that I love reading older pain theorists, researchers and historic approaches to pain. We can learn so much from the pioneers in this area – people like Waddell, Loeser, Main, and Fordyce. While some of the details of theoretical advances may have been superseded, the ideas they promoted remain as potent as ever.

Fordyce, in particular, attracts my interest. Bill Fordyce was a clinical psychologist who pioneered behavioural approaches to reducing disability for people living with persistent pain. Rather than offering repeated surgeries or medications, Fordyce looked to how what we do (behaviour) is reinforced by people and situations around us. From his work, we learned about activity pacing (decoupling the relationship between activity and pain by adopting a quota-based approach to activity), time contingent medication (using medications according to a time schedule rather than “as needed”), and we learned a great deal about how other people’s responses to an individual’s behaviour could inadvertently increase or reduce the frequency of that behaviour.

Why is this important? Well, aside from the way pain behaviours develop from childhood (crying? Mama will cuddle you. Want something? Cry – and Mama will cuddle you), responses from a person’s partner will likely influence both verbal complaints and physical movements (pain behaviours) such as grimacing, bracing and guarding, and in surprising ways. In fact, in an electronic diary study where people with chronic low back pain and their partners (who had no pain) were asked to record responses five times a day for 14 days, researchers found that when a spouse observed their partner’s pain behaviour at one time, they’d be more likely to be critical or hostile towards that person at a later time. If the spouses believed that the person with pain was “trying to influence their feelings” at the first observation, their responses were more likely to be critical or hostile – and it was the attributions made by partners that mediated between pain behaviours and the subsequent criticism leveled at the person (Burns, Gerhart, Post, Smith, Porter, Buvanendran, et al., 2018).

The so what question is sure to come up for some people. Why do we care? It’s not like we can do anything about this, is it? Well… you know me – writing about this stuff isn’t just for fun! The first thing to know is that if something is influencing a person’s behaviour and especially their disability, rehabilitation professionals should be aware of it. Relationship “stuff” is part and parcel of rehabilitation because it’s part of the person’s context. Secondly, it’s not about judging whether this is good, bad or indifferent – it’s about recognising an influence on the person and considering how we might support that person to respond in a way that enhances their recovery. Finally, we need to recognise how behavioural expressions and responses to them influence us. An earlier study by the same researcher (Burns, Higdon, Mullen, Lansky and Wei, 1999) found that expressions of anger and depression by the person influenced the therapeutic alliance with the health professional and this was perceived both by the person and his or her therapist.

Should we, can we do anything to help?

First, to the “should.” Whether we like it or not, these influences are occurring – so they are having an effect anyway, and both on us and the person we’re working with. We are also constantly influencing our patients because we’re inherently social animals. It’s just that we’re probably oblivious to our influence, and consequently are likely to react rather than respond. While I don’t advocate clinicians who haven’t undertaken specific training in relationship work to begin “therapy”, there are some basic things we can and I think, should, do. We should because we’re already influencing anyway – so let’s do something helpful.

The second is, can we do anything to help? Well, yes – because as I’ve said above, we’re influencing anyway. Everything we say and do will likely influence the person we’re seeing and possibly their partner and family.

The first thing we can do is let the person we’re working with know that what they say and do influences the people around them. This might be a revelation to some! We can let them know that this communication is not deliberate, and neither is the interpretation by the partner. It’s part of being human and social.

The next thing we do is offer some information to the person and their partner. Preferably written or video – something that the person can share with their partner. This information should be about the nature of persistent pain (in particular), and that a person’s pain behaviour is unintentional. In other words, that what a person does is explicitly not intended to make the partner “feel bad for them” (ie garner sympathy – in fact, quite often it’s the opposite of what the person really wants!); that they’re not intentionally wanting to avoid doing something; and finally, that they’re not intending to “give in to the pain too easily”.

Another thing we can share with the person and their partner is that because pain is personal and internal, openly communicating about what’s going on is important. None of us are good at mind-reading! The responsibility for obtaining help has to be with the person living with pain, not the person who is observing. This might mean the person with pain needs to think about what they want their partner to do. Often it’s nothing – no fuss, no molly-coddling (been dying to use that word for a while!). But if the person does want something, it’s really good to be specific and clear: “I can’t lift this, can you give me a hand”. This doesn’t mean taking over, BTW!

Where possible, I think it would be great to ask partners and family to be involved in rehabilitation. I wonder at insurers who don’t allow partners or family/whanau to be involved in rehabilitation. I think it’s detrimental – because increasingly, we know that the social context of daily life is such an important influence on disability. Asking partners to be part of rehabilitation might be a bit easier under “lockdown” conditions in many countries at the moment, but even without these conditions, perhaps recording selected parts of sessions, even having a meeting (virtual or face-to-face) might allow partners to be part of their loved one’s rehabilitation journey.

Burns, J. W., Gerhart, J., Post, K. M., Smith, D. A., Porter, L. S., Buvanendran, A., . . . Keefe, F. J. (2018). Spouse Criticism/Hostility Toward Partners With Chronic Pain: The Role of Spouse Attributions for Patient Control Over Pain Behaviors. J Pain, 19(11), 1308-1317. doi: 10.1016/j.jpain.2018.05.007

Burns, J. W., Higdon, L. J., Mullen, J. T., Lansky, D., & Wei, J. M. (1999). Relationships among patient hostility, anger expression, depression, and the working alliance in a work hardening program. Annals of Behavioral Medicine, 21(1), 77-82.

Around and around and around we go – or…back to the beginning again


ResearchBlogging.orgIn the early days of non-medical chronic pain management, operant models of behavioural learning were used by Prof W Fordyce.  At the time, this was a revolutionary approach to helping people with chronic pain reduce their disability, distress and depression by altering the reinforcement schedules operating on pain behaviour.  It was such an innovation because it moved the focus from pain intensity to disability associated with pain, and in doing so, it offered hope to the many people who were otherwise thought unlikely to ever “get better”.

Operant models gradually fell out of favour as cognitive behavioural approaches for managing pain became popular over the 1990’s and later.  Refinements to behavioural approaches have been incorporated into ACT (Acceptance and Commitment Therapy) and graded exposure treatments for pain-related anxiety and avoidance – but this hasn’t been extended to operant conditioning.

What exactly is operant conditioning? The simplest way to think of it is to remember “operant” conditioning “operates” on the environment with behaviour maintained by what occurs afterward – so we need to think about rewards, punishments, and positive and negative conditioning.  In other words, the chance I’ll reach for a certain brand of chocolate bar will go UP if I receive some sort of reward for doing so, while the chance of my watching the Rugby World Cup will go DOWN if the people around me groan in unison whenever a game comes on the TV.  But this depends on whether I want the reward offered by the chocolate manufacturer – or I’m bothered by people groaning when I have the TV on!

In a really interesting study by researchers from Eastern Michigan University and University of Washington (Seattle), three hypotheses were tested: fear-avoidance, operant, and pain models, and their ability to predict activity levels.

To recap, the so-called fear-avoidant (pain-related anxiety and avoidance) model involves anticipatory anxiety, or specific fear of movement/reinjury and the resultant avoidance of activity and is usually associated with a classical conditioning process.  A person moves and simultaneously experiences pain or the fear of pain/reinjury, and therefore movement becomes associated with pain.  It doesn’t take long before the person avoids movement because it hurts, and because of the meaning of the hurt.

The operant model involves the person’s behaviour “operating on” the environment (usually involving people’s responses to the behaviour) which serves to increase or reduce the likelihood the person will do that particular behaviour again.  Think of someone coming home with a headache, looking poorly, maybe lying down, and the partner offering comfort – chances are, if the person liked this response, he or she will do the same thing next time a headache comes to visit!

In the pain model, it’s believed that the experience of pain itself dictates the degree of disability an individual has.  So, the person may have a neurobiological vulnerability leading to a greater sensitivity to painful input, and an augmented experience of pain.

In this experiment, 20 patients with chronic low back pain attending a tertiary pain management centre were asked to complete a range of questionnaires, and then were tested with a pressure algometer to determine the pressure at which they experienced pain.  This is thought to help identify the degree of “pain sensitivity” people may have and in this experiment was used to test the pain model.

Then patients were asked to wear an accelerometer to determine their activity level over five days – except when in water (showering, bathing, swimming).

Working some awesome statistical analyses (that, as usual, I won’t go into! Read the paper itself for more details), the researchers found that “the operant model emerged as the only model accounting for a statistically significant amount of the variance in physical activity”.  While the other two models were also relevant, and did contribute to the level of activity people carried out, family and/or spouse responses that were less solicitous, less punishing, and more distracting predicted higher activity levels.

The researchers concluded that“significant others’ responses account for a significant amount of the variance in physical activity, confirming that reinforcement of behavior is a powerful mechanism for behavior change”.  In a sense, this is not news – the response of family and others has always been thought to be important.  What is news is that when the other two models were tested concurrently, the factor that had the most impact on activity level was that of family and partners.

Here’s a question: how often do we

(a) assess the responses of these important people in behavioural terms?  While we might ask about the impact of pain on relationships, I think we need to examine what people do when the person is experiencing pain, and we also need to know how the person demonstrates or displays their pain – what the significant other is responding to, and

(b) specifically address how the person with pain can manage the responses of other people to their pain behaviour? Do we tell the person to communicate effectively about their pain to help them let other people know what they would like them to do when they’re sore?  It can be a very delicate process to negotiate how to ask the partner not to take over the activities the person with pain is beginning to do again! and finally

(c) include the family and partner in our treatments, goal setting and pain “education” so they are more fully informed about what their family member is trying to do, and so they can know what their best options for offering support might be?

It’s almost like deja vu – operant conditioning is coming back in from the cold.  I’d love to know your take on how we can do this within our usual practice. 

Alschuler, K., Hoodin, F., Murphy, S., Rice, J., & Geisser, M. (2011). Factors contributing to physical activity in a chronic low back pain clinical sample: A comprehensive analysis using continuous ambulatory monitoring PAIN DOI: 10.1016/j.pain.2011.07.017