First book to describe what pain means in vulnerable or special groups of people
Clinical applications described in each chapter
Provides insight into the nature of pain experience across the lifespan
This book, the third and final volume in the Meaning of Pain series, describes what pain means to people with pain in “vulnerable” groups, and how meaning changes pain – and them – over time.
Immediate pain warns of harm or injury to the person with pain. If pain persists over time, more complex meanings can become interwoven with this primitive meaning of threat. These cognitive meanings include thoughts and anxiety about the adverse consequences of pain. Such meanings can nourish existential sufferings, which are more about the person than the pain, such as loss, loneliness, or despair.
Although chronic pain can affect anyone, there are some groups of people for whom particular clinical support and understanding is urgently needed. This applies to “vulnerable” or “special” groups of people, and to the question of what pain means to them. These groups include children, women, older adults, veterans, addicts, people with mental health problems, homeless people, or people in rural or indigenous communities. Several chapters in the book focus on the lived experience of pain in vulnerable adults, including black older adults in the US, rural Nigerians, US veterans, and adults with acquired brain injury. The question of what pain experience could mean in the defenceless fetus, neonate, pre-term baby, and child, is examined in depth across three contributions.
This book series aspires to create a vocabulary on the “meanings of pain” and a clinical framework with which to use it. It is hoped that the series stimulates self-reflection about the role of meaning in optimal pain management.
Meanings of Pain is intended for people with pain, family members or caregivers of people with pain, clinicians, researchers, advocates, and policy makers. Volume I was published in 2016; Volume II in 2019.
Request a sample by emailing me: simon.vanrysewyk@utas.edu.au, or vanrysewyk@hotmail.com
Buy the complete book on Springer’s website, here.
Gordon, also known as “Whipped Peter”, a former enslaved African American man, shows his scarred back at a medical examination, Baton Rouge, Louisiana, on 2nd April, 1863. The scars were the result of whipping during his time as an enslaved person at a Louisiana plantation. (Source: Wikimedia Commons)
A reason for thinking that pain is private – hidden to external observers – is the uncertainty that affects our judgements about the pain of others.
When someone appears to be in pain, it seems self evident that what matters is not the pain behaviour that we observe, but the pain experience that lies ‘behind’ the behaviour. We find it natural to say that ‘pain is private; we infer it only inconclusively from the behaviour.’
We naturally think: first-person experience is certain; third-person observation is uncertain. The person in pain has privileged, or immediate, access to his or her pain. Doubt is excluded in the first-person case.
Is this thinking correct?
Following the philosopher Wittgenstein, doubt in the first-person is excluded, not because pain is a private experience, but because the practice of pain excludes it. In the practice of pain, the individual has the role of expressing pain experiences; these expressions include a diverse range of verbal and non-verbal behaviours. In the swing and play of the practice, we treat these behaviours as authentic. To introduce doubt here would alter the practice of pain; importantly, it would undermine our concept of the person.
In clinical settings, this is reflected in McCaffery’s maxim that “Pain is what the person says it is, and exists whenever he or she says it does.” This brings the person to the fore, and makes patients the authority in their pain experience. This approach to pain assessment is also aligned with the principles of patient advocacy and ethical clinical treatment.
Why can’t a person be wrong about his or her own pain? The reason Wittgenstein proposed is that assigning the individual the role of expressing pain means there is no gap between what the person sincerely says her experience is, and what it really is. If we are trying to determine the effect of pain on a person’s quality of life, it is what the person says, and not anyone else, that is correct.
The point is not that the individual feels pain only she can feel, but that we treat her as a person, and on the basis of her behaviours, including self-report, assign to her particular sensations, thoughts, and moods. The ‘privacy of pain’ reflects not the intrinsic privacy of pain experience, but our practice of pain based on the notion of a person whose behaviours are treated as authentic expressions of pain.
Still, a person’s utterances may only partly signify the complexities of pain experience, and some situations warrant people be careful what they reveal. Some pain behaviour may therefore reflect perceived best interests, and this is contextual. Care-delivery in pain settings can involve a threat to the caregiver, and is conditional on the authenticity of pain behaviour. As observers of pain behaviour, we are sensitive to signs of exaggeration, suppression, or malingering. Thus, fine shades of behaviour are important in the evaluation of ‘what is going on’ in the setting of pain, and lead our relation to each other as persons. The practice of pain does not always connect behaviour and pain experience in a rigid way.
Navigating these complexities can make patient-clinician interactions challenging.
How do children learn the concept of pain? What is the ‘concept of pain’?
Children’s pain language
“Children rapidly develop an extensive vocabulary to describe pain between 12 and 30 months of age, with words for pain from injury emerging first and reflecting the development of normal speech acquisition. The differences in verbal expressions in the context of minor illnesses and injuries suggest that children make a cognitive distinction between the origins and sensory aspects of pain.
“Children’s expressive pain vocabulary appears to serve multiple purposes beyond simple description.We found that very young children have awareness of objects and actions that can alleviate pain and use language to seek parents’ attention and to engage parents in pain relief activities. In keeping with general language development, the youngest children used individual pain words or exclamations to convey more complex concepts (known as holographic or telegraphic speech) whereas older children demonstrated greater linguistic competence, including use of metaphor, simile and analogy (Karmiloff & Karmiloff-Smith 2001; Meadows 2006). Interestingly, the basic exclamatory vocalizations are retained throughout childhood and may reflect familial or cultural context that persist into adulthood (Craig et al. 2006).We found that parents’ communicative intent was primarily to gain further information from children about the source and nature of pain and to direct children’s behaviour.”
Franck L, Noble G, Liossi C. From tears to words: the development of language to express pain in young children with everyday minor illnesses and injuries. Child: care, health and development. 2010;36(4):524-33.
“Children’s use of the different pain descriptors changes as they grow older. Younger children (≤3;11), for example, mainly use interjections, such as “ouch” or “ow,” and words like “ache” to describe their pain. Literature indicates that children start to use the word “pain” for the first time at the age of 3;0 to 3;11 (Craig et al., 2006) and continue to use interjections and descriptors to describe their pain as they grow older (Craig et al., 2006; Ely, 1992; Wennström & Bergh, 2008).
When younger children do not yet have the cognitive and language skills to explain the bodily sensations that they experience during pain (Dubois et al., 2008), they try to explain pain with concrete phrases like “I lose my smile and feel bad” (Jerrett & Evans, 1986) or “I’m not feeling well” (Kortesluoma & Nikkonen, 2006). Some use comparisons such as “I had a real bad – kinda like a scar” (Ely, 1992) or “Feels like someone hit it with a sledge hammer” (Abu-Saad, 1984a). Other children explain what caused the accident that resulted in the pain experience, such as “I was playing too rough…” (Harbeck & Peterson, 1992) or “I touched the warm pot” (Johnson et al., 2016).
As children’s thinking develops on a more symbolic level, they start to describe their pain by using more graphic descriptors, such as “terrible, disgusting,” “aching and hurting” (Kortesluoma & Nikkonen, 2006), and “beating or pounding in my head” (Harbeck & Peterson, 1992). Older children tend to include intensifiers when using descriptor words: “really bad;” “pain was radiating…;” “pounding, stabbing, throbbing” (Kortesluoma & Nikkonen, 2006); “horrible; annoying; pin-like; sharp; shooting” (Abu-Saad, 1984a; Harbeck & Peterson, 1992; Savedra, Gibbons, Tesler, Ward, & Wegner, 1982; Wilkie et al., 1990); or “aching; stinging; itching” (Abu-Saad, 1984b; Johnson et al., 2016; Kortesluoma & Nikkonen, 2006; Pölkki, Pietilä, & Rissanen, 1999).
From approximately 8 years of age, children start to think in a more abstract way to describe pain: “Sometimes it is worse and sometimes more like stabbing” (Savedra et al., 1982). Building on these skills, older children (> 10;0) use comparisons (“Like there was a fire inside my head;” “Feels like someone hit it with a sledge hammer”) and define pain as a psychological state based on emotions (“Pain is really upsetting no matter where the pain is;” Kortesluoma & Nikkonen, 2006).
Johnson E, Boshoff K, Bornman J. Scoping review of children’s pain vocabulary: implications for augmentative and alternative communication. Canadian Journal of Speech-Language Pathology and Audiology. 2018;42(1):55-68.
Children’s pain behaviour
“A considerable diversity of actions has been identified as signifying pain in children, including behaviors that could be characterized as verbal (e.g., “asking for help,” “complaining of pain,” and “cursing”), facial activity (e.g., “wincing,” “furrowed brow,” and “widening eyes”), nonverbal vocalizations (e.g., “whimpering,” “crying,” and “moaning”), limb action (e.g., “flailing arms and legs,” “rubbing,” and “protecting/favoring/guarding part of body that hurts”), body action (e.g., “tensing up” and “restless”), physiological manifestations (e.g., “looking pale,” “irregular breathing,” and “shivering torso”), and social behaviors (e.g., “withdrawn,” “hard to console,” and “angry verbalizations”).
Factor analyses yielded three major factors: the “Automatic” factor included items related to facial expression, paralinguistics, and consolability; the “Controlled” factor included items related to intentional movements, verbalizations, and social actions; and the “Ambiguous” factor included items related to voluntary facial expressions.”
Sekhon KK, Fashler SR, Versloot J, Lee S, Craig KD. Children’s behavioral pain cues: Implicit automaticity and control dimensions in observational measures. Pain Research and Management. 2017.
Parents/caregivers
“Parents have well developed, although personal, ways of recognizing and responding to their children’s communication of pain, but also experience uncertainty in their judgments. Parents would benefit from information about the developmental aspects of pain and should be included as active partners in their children’s pain assessment and management.”
Liossi C, Noble G, Franck LS. How parents make sense of their young children’s expressions of everyday pain: a qualitative analysis. European Journal of Pain. 2012;16(8):1166-75.
“Overall, 101 pain incidents were observed, the majority of which evoked low levels of pain and distress, which resolved after 1 min. Pain incidents occurred at a rate of 1.02 incidents/child/hour, with 81% of children experiencing at least one incident, which is higher than previous research with preschoolers and daycare staff. Common parent responses included a range of verbal (reassurance) and nonverbal (staying closer, hugging/kissing child) behaviors. Boys were more likely to not exhibit any protective behaviors. Parents were more likely to pick up older toddlers”.
Noel M, Chambers CT, Parker JA, Aubrey K, Tutelman PR, Morrongiello B, Moore C, McGrath PJ, Yanchar NL, Von Baeyer CL. Boo-boos as the building blocks of pain expression: an observational examination of parental responses to everyday pain in toddlers. Canadian Journal of Pain. 2018;2(1):74-86.
“During the preschool developmental period, parents are instrumental in modelling appropriate pain responding through social learning and modulating their child’s response to pain. Although the literature on parental influences during clinical pain experiences has greatly improved our understanding of social factors in paediatric pain, several avenues of research remain largely unexplored. Specifically, the small number of studies which explored everyday pains spanned a wide time-period, with almost 2 decades between the most recent studies. In this same time period, our understanding of parental influences during clinical pain experiences has advanced significantly, but this evidence does not readily apply to everyday pain experiences. An increased focus should be placed on understanding where children learn about pain and how caregivers respond to common pain incidents in their natural environment.”
O’Sullivan G, McGuire BE, Roche M, Caes L. Where do children learn about pain? The role of caregiver responses to preschoolers’ pain experience within natural settings. Pain. 2021;162(5):1289-94.
Simon van Rysewyk 