The following chapters in Volume I and II of my Meanings of Pain book series describe how meaning makes a difference in common forms of pain:
- Cancer-related pain
- Chronic low back pain
- Complex regional pain syndrome
- Diabetic peripheral neuropathic pain
- Labour pain
- Pain-related suffering
- Rheumatic pain
Cancer Pain and Coping
Sara E. Appleyard and Chris Clarke
Abstract Receiving a diagnosis of cancer can be devastating. Cancer continues to be one of the most feared diagnoses, and experiencing pain is a major fear for people diagnosed with cancer. Cancer pain is complex in aetiology and can be acute or chronic and can be caused by various compression, ischaemic, neuropathic or inflammatory processes. Many people with cancer will experience excruciating pain, which is often underreported and undertreated. The reasons for this are complex and include various factors including fears and beliefs held by patients.
Cognitive factors are important modulators of pain and the appraisals, meanings and beliefs that people have in relation to illness, cancer, and pain, have implications in regard to help-seeking behaviours and the coping strategies people adopt. Cancer pain can impact a range of psycho-social factors across its course. Cancer pain relates to higher rates of psychological distress, anxiety and low mood, and the perception of pain intensity is, in turn, influenced by psychological factors. Cancer pain can negatively affect psychological health, and psycho-social factors can affect the pain experience. It has been suggested that people with a life-limiting illness experience ‘total pain’, and this can encompass psychological, social, practical, spiritual domains.
Research demonstrates that cancer is predominantly an illness affecting older people, yet there is a higher risk of under-treated pain in this age group and there is a paucity of research into the subjective experiences of older people managing their cancer pain. Many older people are required to self-manage cancer pain at home as outpatients, due to drivers to keep people out of inpatient care, such as the high healthcare costs of inpatient treatment, and patients wanting to manage their illness, and die, at home. Our own research into this area found that the self-management of cancer pain involves a sequential and temporal process, which centres on perceptions of control. We describe how the older people in our study experienced a perceived loss of control, followed by a sense of gaining control over pain through various experience of certain internal and external factors. The assessment and treatment of physical pain should be done in combination with assessment and treatment of psycho-social and spiritual pain, and interventions for cancer pain need to focus on increasing positive affect and reducing helplessness. No person should suffer with poorly controlled pain and we argue for the need for further research in this area to ensure adequate treatment for all.
Clinical Implications: Assessment and treatment of physical pain in people with cancer needs to be conducted in combination with assessment and treatment of psycho-social issues and spiritual pain. Psychological and behavioural approaches have strong evidence supporting their efficacy for reducing cancer pain. Interventions should target helplessness and focus on increasing positive affect through positive psychological states including fighting spirit and resilience. Person-centred interventions that focus on helping people with the search for meaning may help those with cancer pain derive positive benefits.
Chronic Low Back Pain
The Lived Experience of Pain-Related Fear in People with Chronic Low Back Pain
Samantha Bunzli, Anne Smith, Rob Schütze and Peter O’Sullivan
Abstract Low back pain (LBP) is a leading cause of disability worldwide. One of the strongest predictors of LBP disability is pain-related fear. The fear avoidance model (FAM) describes how the belief that pain signals damage to the spine can lead individuals into a cycle of fear and avoidance, which in turn sustain pain and physical and psychosocial disability. A large body of research has supported the relationships proposed by the FAM; however, randomized controlled trials based on the model have reported modest effect sizes for reductions in fear and disability. Limitations of the model in its current form may be impeding its clinical utility and applicability to the wider population of people with LBP and high pain-related fear. In particular, while the FAM conceptualises pain-related fear as a “phobia” driven by the underlying belief that pain signals damage, it is possible that “non-phobic” processes also trigger pain-related fear and avoidance. In this chapter, we examine the lived experience of LBP and pain-related fear. We explore personal explanations and narratives related to the beliefs underlying pain-related fear, the factors associated with these beliefs and how fear may change over time. We consider how individual variance in qualitative data relates to scores on quantitative measures of fear. Finally, we offer an alternative framework to understand the lived experience of pain-related fear, based on “common sense” rather than only “phobic” processes. We will propose that incorporating a “common sense” perspective into future iterations of the FAM may extend its clinical utility and have implications for the next generation of fear avoidance research.
An Interpretative Phenomenological Analysis of Non-Malignant Chronic Low Back Pain
Abstract The aim of this chapter is to introduce the use of interpretative phenomenological analysis (IPA) in relation to understanding the subjective realities of individuals with chronic low back pain (CLBP). The chapter will begin with an overview of how phenomenological approaches may be of particular value in understanding how pain appears to a patient and ultimately the embodied nature of patients’ pain experiences. This will be followed by an introduction to IPA, its theoretical background and ontological and epistemological claims. The rationale for exploring subjective experiences of people with CLBP will be expounded and the main findings discussed in relation to clinical practice. The chapter will conclude by exploring the ways in which findings from an IPA study may contribute towards a First-Person Neuroscience of Pain.
Changing Pain: Making Sense of Rehabilitation in Persistent Spine Pain
James E. Eubanks, Michael E. Farrell, Brandon S. Barndt, Chandler L. Bolles, Maria Vanushkina, and James W. Atchison
Abstract When acute pain persists beyond the expected healing time following an injury, important neurological changes occur that allow pain to transition from adaptive to maladaptive. Spine pain has become an important global problem, with significant increases in prevalence, disability, and subsequent healthcare costs over the past several decades. Low back pain is now the number one cause of disability in the world. Because of the magnitude of the effect of low back pain, and especially chronic low back pain, it has become imperative that we embrace the best available evidence and clinical sensibilities as we work with patients to find appropriate solutions. Intrinsic to the successful care of persons with spine pain is the acknowledgment that the experience of pain is a biopsychosocial one. There is no universal experience of pain and thus our solutions must accommodate variation in the meanings of pain. Experiential (qualitative, subjective) knowledge of spinal pain can be integrated with our understanding of spinal pain neurobiology (quantitative, objective) in rehabilitation contexts to improve health outcomes. Ultimately, the rehabilitation of persons with spine pain exists at the intersection of the objective and subjective goals of care.
Clinical Implications: Understanding the full biopsychosocial scope of spinal pain allows clinicians to strengthen their therapeutic alliance with patients, reinforce self-efficacy, identify patients at risk for poor outcomes and intervene early, stratify care appropriate to the individual’s needs, reduce or prevent pain chronification, reduce direct and indirect costs to patients and society, and improve overall quality of life.
Complex Regional Pain Syndrome (CRPS)
Living with Complex Regional Pain Syndrome: Understanding the Battle
Colleen Johnston-Devin, Florin Oprescu, and Marion Gray
Abstract Living with complex regional pain syndrome (CRPS) can be described as similar to living with any other chronic pain condition, but with extra complications. Many health professionals have never heard of the condition and it is even less known in the general community. There is a diversity of presentations, no objective medical test for diagnosis, and it remains a diagnosis of exclusion based on clinical signs and symptoms. The pathophysiology is not fully understood and there is no dedicated treatment. There are only low-quality data supporting any treatment approach. Although there is no known cure it may go into remission. It may also reappear. The condition may occur spontaneously. Although the mechanisms are not well understood, it can spread to other parts of the body.
This chapter is based on a PhD study entitled “Battling Complex Regional Pain Syndrome: A Phenomenological Study.” The aim is to describe and discuss the meaning of living with CRPS. Using a heuristic hermeneutic phenomenological approach to investigate the phenomenon of living with CRPS, 17 patients and four health professionals from 6 different countries were interviewed. Textual material from internet blogs and a book containing patient stories were also included as data sources. As the first author has been diagnosed with the condition, she was interviewed as well. Serving multiple purposes, the interview transcript was used as data while allowing for explication of preunderstandings and assumptions. This is an important step in phenomenological research. Findings revealed that living with CRPS is a daily battle. Within the battle analogy, readers can recognise aspects of the themes and relate to them on some level. Within this battle, there are many smaller, but important, fights. These fights are the themes which are:
• Dealing with an unknown enemy;
• Building an armoury against a moving target;
• Battles within the war;
• Developing battle plans with allies; and
• Warrior or prisoner of war.
The enemy is CRPS. Patients are the soldiers or warriors fighting it. From fighting for a diagnosis and coping with strange symptoms and disbelief, patients struggle with a condition that has no known cure and constantly changes. They battle against moving a painful body part too much and causing a flare or moving it too little and losing use of it. They face judgement from others, including health professionals, who do not understand CRPS. Support can be difficult to find. Patients must become resilient and must rise to the challenge with a warrior like attitude. Those who don’t may feel like a prisoner of war. This chapter provides vignettes composed from patient interviews. The vignettes could facilitate a better understanding of lived experiences from the patients’ perspective.
Clinical Implications: Health professionals (HPs) have little understanding of the smaller battles faced by patients living with CRPS and patient goals do not necessarily correlate to those of the HP. It is anticipated that with better understanding of the lived experience, HPs will deliver more empathic patient focused care. This could result in the clarification of realistic patient goals and needs as opposed to HP expectations of adherence and compliance to therapeutic interventions and could foster more collaborative and supportive self-management strategies for patients.
Diabetic Peripheral Neuropathic Pain
Common Meanings of Living with Diabetic Peripheral Neuropathic Pain from the Perspective of Patients
Zehra Gok Metin
Abstract Contemporary pain medicine is necessary to explain pain and to help in its treatment; yet, preference for biomedical explanation of pain in the field has meant that attention to the personal experience of pain and to the meanings of pain experience remain a blind spot in knowledge. Thus, the pain literature includes limited information about the common meanings of living with diabetic peripheral neuropathic pain (DPNP) from the perspective of patients. The purpose of this chapter is to describe some of the common meanings of pain in patients with DPNP, as currently reported in the literature, how these meanings interact with other common factors in pain experience, including specific negative emotions or moods (depression, anxiety, anger), or the psychosocial context surrounding pain, and to describe available evidence on the effectiveness of cognitive behavioral therapy (CBT) for patients with DPNP. Further quantitative, qualitative or mixed methods research is needed to more fully understand common experiences of pain in patients with DPNP, and the common meanings ascribed to these experiences.
Clinical Implications: Pain in patients with DPNP involves a range of threatening pain sensations, including sensations with burning, shooting, tingling, or cramping qualities, and additional more cognitive meanings linked to persistent pain, including a sense that pain disrupts daily life in an intrusive way. Pain affects many aspects of daily experience that are meaningful to patients with DPNP; some describe ongoing physical difficulties, others describe work-related problems or challenges in sexual intimacy. Given the heavy personal burden that DPNP imposes on patients and the considerable challenge of managing the condition pharmacologically, clinical use of non-pharmacological therapies such as CBT for painful diabetic neuropathy might be warranted in individual patients.
The Importance of Pain Imagery in Women with Endometriosis-Associated Pain, and Wider Implications for Patients with Chronic Pain
Christopher J. Graham, Shona L. Brown, and Andrew W. Horne
Abstract Pain imagery is “like having a picture in your head [of your pain] which may include things you can imagine seeing, hearing or feeling.” Pain imagery may offer a unique insight into a patient’s pain experience. This chapter summarises findings from international pain imagery research in women with endometriosis-associated pain. Endometriosis is a chronic inflammatory condition associated with debilitating pain that affects 5–10% of women of reproductive age worldwide. Our international research has found that pain imagery is experienced by around half of women suffering from endometriosis-associated pain, and is associated with higher levels of catastrophising, depression, and anxiety. However, coping imagery is also reported, and prevalent, at 30%. Pain imagery in women with endometriosis falls into themes: sensory qualities of pain; loss of power or control; attack (by someone, “something,” or self); pathology or anatomy envisaged; past or future catastrophe; pain as an object; and abstract images. Imagery content may therefore reveal the meanings of pain or endometriosis to these women. This chapter explores pain imagery content and its personal significance to patients, both for women with endometriosis-associated pain and for patients with other chronic pain conditions. The chapter concludes by discussing the clinical application of imagery, with example patient cases to contextualise the practicalities and therapeutic potential of imagery techniques.
Clinical Implications: Pain imagery was reported by half of women with endometriosis-associated pain in our international study and associated with higher levels of catastrophising, depression, and anxiety. Imagery content is extremely varied but can be categorised into themes, which may offer unique insights into each woman’s pain experience. Coping imagery was prevalent at 30%. We believe imagery techniques may be particularly helpful for women with endometriosis associated pain and discuss these techniques, which should be of interest to professionals involved in pain management.
After the Tango in the Doorway: An Autoethnography of Living with Persistent Pain
Bronwyn Lennox Thompson
Abstract Persistent pain is a common health problem and increasingly, qualitative research is being used to explore the impact on daily lived experience. Stigmatisation and “othering” is reported in these studies, and health professionals indicate they struggle to know how best to help this group of people. In this autoethnography, I provide an account of my life as a clinician, educator, researcher and social media commentator who lives with fibromyalgia. Through this narrative I consider the social factors influencing my attitudes towards my own pain over time, and the position I hold as a member of many different social groups discussing persistent pain management.
• People seeking help for their pain are influenced by family habits and attitudes towards healthcare and accepting clinical opinion.
• Although persistent pain is common, “othering” or the tendency to see those with
persistent pain as different from clinicians (in a negative way) is frequently
encountered. This may be inadvertent but results in stigma.
• Information about pain mechanisms is insufficient for supporting a new way of living life for people with persistent pain.
• People with persistent pain may reject the narratives of people who have learned to live well with their pain, and this can be isolating and difficult to deal with.
• There is little research investigating how clinicians advise people of their persistent pain diagnosis, leaving a gap in our understanding of the best way to convey this information.
• Researchers who themselves live with persistent pain provide a unique insight into what it is like and may offer new ways for clinicians to carry out their work.
Laura Whitburn and Lester Jones
Abstract Contemporary thinking about pain suggests its ultimate function is more than just to indicate bodily injury, pathology or disease. This would seem especially important in the pain that a woman feels during labour and childbirth. The event of birthing a child is essentially a normal and vital physiological process but the pain women report can be extreme. In addition, it can be quite variable, and the variability cannot be explained by tissue-based factors alone. The variability extends not just to the intensity of the pain but also to its quality and behaviour. Equally variable is the ability for women to cope with the pain associated with childbirth. It can be anticipated that individuals will have differing capacities to cope, but the variability can also be a moment-to-moment proposition for the individual woman. In this chapter we will discuss the idea that the meaning of labour pain to the woman may be more important than its nature or intensity in determining the balance between coping and acopia and in defining her overall experience. In doing so, we will also
highlight the limitations in current conceptions of pain that cannot yet fully account
for unique occurrences of pain, such as the pain of labour and childbirth.
Capsule Summary: The concepts explored in this chapter emphasise the need to attend to the individual meaning that a woman ascribes to her pain experience during labour. We suggest that by conceptualising labour pain as a productive and purposeful pain, prioritising individualised social support and attending to cognitive and emotional variables that shape a woman’s perception of pain, women may be more likely to have positive experiences of labour pain and less need for pharmacological intervention.
A Scientific and Philosophical Analysis of Meanings of Pain in Studies of Pain and Suffering
Abstract Carefully weighing three major constraints for elucidating pain and pain-related suffering, I argue that the study of their meanings in experimental and clinical research is necessary. This research program can further the understanding of pain self-report observable pain behavior in addition to physiological signals of pain, thus combining subjective and objective measures for better assessing the pain experience. Much of the information is derived from the encountered difficulties during the ongoing development of pain and related suffering questionnaires, in both the laboratory context conducting experimental studies with healthy volunteers and in the clinic with chronic pain patients. The chapter exposes the challenges of meaning acquisition while proposing, following Eric Cassell, that the study of pain recognizes both objective and personal meaning types.
The chapter also explains why the ambition of science to obtain an exhaustive picture of pain is impossible, and that a continuous revision of pain meanings is necessary, especially for clinical studies of chronic pain patients. The methodological dilemma however remains, whether a direct approach is the most appropriate for understanding the state of the patient or is it rather an indirect gathering of information that may best depict individual pain and suffering.
Diagnosing Human Suffering and Pain: Integrating Phenomenology in Science and Medicine
Abstract This chapter shows that phenomenology may be critical to diagnose human suffering in science and medicine, significantly improving patients’ well being, while providing a more thorough understanding and adequate management of on-going suffering in the context of chronic pain and other major illnesses. Historical and contemporary references from philosophy, medicine, and science explain why, to date, there is no golden rule or consensual definition of suffering. As a solution, the paper calls for a paradigmatic conceptual shift, explaining the fundamental principles, and how they are translated into an experimentally and clinically tested “Pain-related Suffering assessment tool,” as demonstrated by Bustan’s Fan Models. The tool is tailored for individual use for enhancing personalized care. And while reviving George Canghuilem’s important historical message about individuality in medicine, it seeks to combine impersonal knowledge and personal knowledge to improve medical science and practice.
Clinical Implications: The demand from physicians to be more attentive in assessing the suffering of their patients was introduced by Eric Cassell (1982) as one of the fundamental aims of medicine. This concern, taken into account by health professionals, is difficult to fulfill in the absence of appropriate measures. In addition, the focus on end-of-life suffering has excluded, in the vast majority of cases, patients with chronic pathologies and in particular those with chronic pain whose suffering is part of everyday life. This chapter therefore presents the conceptual shift necessary for the development and validation of a simple and effective clinical tool to diagnose suffering, allowing a more precise assessment and individualized care for chronic pain patients, applicable to other chronic illnesses.
“Let Me Be a Meaningful Part in the Outside World”: A Caring Perspective on Long-Term Rheumatic Pain and Fear-Avoidance Beliefs in Relation to Body Awareness and Physical Activities
Abstract Pain is a key outcome measure in persons with rheumatoid arthritis (RA) or psoriatic arthritis (PsA). Improving physical and social functioning is an important treatment goal in patients with RA or PsA. High self-rated pain is linked to elevated fear-avoidance beliefs for engaging in physical activity. Some research has demonstrated that when people’s attitudes and beliefs towards pain are negative, they often have elevated levels of body awareness. Many persons with moderate to severe self-rated rheumatic pain report a desire to be part of a wider social and active context, which is perceived to be a source of positive energy and meaning in life. Patients have suggested that physical activities can mediate pain reduction and a distraction from it. During periods of solitude or episodes of sedentary behaviour, inner bodily attention in some patients with RA or PsA is often directed towards the “problematic body” and self. The perceived “untrustworthy body” has to deal with many bodily memories and emotions. Contemplating the past (the former perceived “healthy body”) may interrupt a person’s ability to live life and trying to determine a future life with an unreliable body presents concerns for future consequences. This behavioural pattern can lead to maintained negative fear-avoidant behaviour and a more inactive life-style, resulting in new negative existential meanings of loss and helplessness. Despite suffering from rheumatic pain in this way, these patients point out their desire to participate in a wider social and active context without being subject to any form of discrimination, which is perceived as the main and new source of positive energy and meaning in life.
Clinical Implications: There is a common meaning of bodily intrusion and threat in persons with long-term rheumatic pain. Registered nurses can play a crucial role by helping their patients identify new understandings and cognitive meanings in relation to long-term rheumatic pain. Living a meaningful life in the active outside world is paramount for improving and maintaining general health and well being in persons with RA and PsA. A sedentary lifestyle together with long periods of solitude can lead to additional health problems and negative meanings.