I love it when my biases are challenged (seriously, I do!). And in the study I’m talking about today, my biases are sorely challenged – but perhaps not as much as I initially thought.
Lance McCracken is one of my favourite researchers investigating processes of acceptance and living a good life in the presence of chronic pain. In this paper, he collaborates with a colleague currently involved in the INPUT pain management programme established at Guy’s and St Thomas’ NHS originally by Michael Nicholas who draws on a CBT model of pain management, and now more firmly in the third wave camp of ACT (Acceptance and Commitment Therapy). The paper is ‘Making sense’ and describes a cross-sectional study of sense-making by people with chronic pain attending the INPUT programme.
Making sense is something humans do without even thinking about it. Humans are prone to (and probably for good adaptive reasons) generate patterns out of random information. We gaze at shadows at night and think we see faces or intruders, and we look at clouds and see dragons and kittens. When we’re sore we also try to make sense of what’s going on – does this ouch feel like something I’ve had before? does it feel mysterious or can I carry on? have other people I know had this same ouch and what did they do?
In the search for making sense out of pain that otherwise seems random, clinicians have, since time immemorial, generated all sorts of stories about what might be going on. The wandering uterus. The evil spirit. The slipped disc. The leg length discrepancy. Clinicians, when faced with their own uncertainty about what exactly pain represents, can encourage patients to seek diagnosis: some sort of “explanation” for the problem. When that’s insufficient, more recently we’ve seen the flourishing of explanations for pain from a neurobiological perspective, particularly “pain as an expression of threat to bodily integrity”, a decision that is “made by the brain”.
My own research, investigating the experiences of people who indicated they live well with pain, reflected this same process. They sought a name for their experience, they wanted to understand the impact of pain on daily doing – those fluctuations and variances that emerge during the days and weeks early in the journey of learning that this pain isn’t going anywhere soon (Lennox Thompson, et al., 2019). Note that the group of people I recruited had come to the point where they identified that they were living well with pain – this group of people represent a small percentage of those who live with chronic pain, and not those who are seeking treatment.
OK, so what did McCracken and Scott (2022) find?
Bear in mind that this study was designed to measure the construct of sense-making in people seeking treatment for chronic pain. Also bear in mind the authors come from a perspective of functional contextualism, or a philosophy of science that argues for “…studying the current and historical context in which behavior evolves … to develop analytic concepts and rules that are useful for predicting and changing psychological events in a variety of settings.” What this means to me is that the form of whatever behaviour we’re observing/measuring matters less that the purpose or function of that behaviour in a specific context.
OK, on with the study.
451 adults attending an interprofessional pain management programme were participants in this study, and the measures were taken before they started treatment. They completed a battery of measures including ones measuring acceptance, cognitive fusion, committed action, tolerance of uncertainty, and pain measures such as the Brief Pain Inventory, numeric rating scale.
The research aim was to investigate a way to measure not only the positives from sense-making, but also the potential adverse effects of doing so. Concurrent with developing the measure, analyses of the inflexible ways we make sense were carried out in relation to outcomes: pain interference, depression and participation.
In the results (read through the analysis, BTW, it’s beautifully detailed), women were found to overthink compared with men, older people tended to want to avoid a sense of incoherence, and more educated people also tended to overthink.
Now, a little theory: coherence can be either literal or functional. Literal coherence is like “common sense” – so if I interpret my pain as meaning something is damaged, and moving it is bad, this is literal coherence. Functional coherence might occur when I realise that I hurt whether I’m doing things, or not, and I decide “this is how it is, I might as well get on with life”. In effect, as McCracken and Scott say, “these terms reflect the difference between language, thoughts and behavior fitting together consistently, (thoughts agree with other thoughts and behavior) versus behavior and goals in life fitting together consistently (behavior patterns succeed in reaching goals even when this seems to contradict “good sense”).
In daily life, people consistently prefer to solve problems and avoid insoluble problems. Makes sense, doesn’t it? Why try to deal with things that won’t change, even if we try hard to change them? BUT then we have insoluble problems that don’t make sense: the earthquakes in Christchurch New Zealand in 2011-2013 were random and we hadn’t had earthquake activity in our city for centuries – consequently we had many crackpots coming up with “predictions” for the next swarm of earthquakes based on phases of the moon or fracking or climate change. Anything to help people feel like they had a sense of control over something that did not make sense.
Chronic pain is often an equally insoluble problem. Many times pain like this does not make sense at all. No injury precipitated my fibromyalgia. There’s no imaging or biomarker for pain intensity. Existing biomedical diagnoses based on structural or biochemical or neurological processes don’t tell us much about who might get chronic pain, how intense it might be, or the impact of that pain on a person’s life. But clinicians and people with pain earnestly seek something, something to explain what’s going on.
For both clinicians and people living with pain, constantly searching for The Thing to explain pain can be exhausting, demoralising and linked to unhelpful patterns of behaviour. Clinicians might repeat the same treatment even though it didn’t work the first time. They might refer the person for more investigations, just in case something was missed. They might refer the person to another clinician, or, worse, they may attribute the pain to “mental illness” or “psychosocial factors”. Many, many clinicians think that giving a person a book about how pain might be constructed “in the brain” will be enough for people to make sense of what’s going on. People with pain might be afraid to get on with life in case they’re doing harm, or because they’re hoping the fix might be around the corner and life can “get back to normal”. They may spend enormous sums of money, time and emotion on treatments to either diagnose the problem, or treat it. They might spend hours brooding on what it could be. Their lives often stop – people with pain have called this “the endless limbo”.
Now there is a measure of sense-making I guess we’ll find out more about this part of learning to live with pain. The three subscales identified were “avoidance of incoherence”, “overthinking”, and “functional coherence”, though the last subscale had poor psychometric properties so wasn’t included in the final analyses.
My wish, however, is that rather than applying this measure to people attempting to make sense of something outside of their experience, we might develop a measure of how rigidly clinicians stick to “coherence” in the face of puzzling pain problems. Perhaps what might be even more influential, we might develop a measure of what happens when a vulnerable person trying to make sense of their pain meets a clinician with a high level of inflexibility about “what is going on”, because despite all the research we have into people living with pain, we haven’t yet recognised the power of the clinician in perpetuating unhelpful inflexibility.
Lance M McCracken , Whitney Scott , Potential Misfortunes in ‘Making Sense’: A Cross-sectional Study in People with Chronic Pain, Journal of Pain (2022), doi: https://doi.org/10.1016/j.jpain.2022.09.008
Lennox Thompson, B., Gage, J., & Kirk, R. (2019). Living well with chronic pain: a classical grounded theory. Disability and Rehabilitation, 1-12. https://doi.org/10.1080/09638288.2018.1517195