Meanings of Pain: Volume 3: Vulnerable or Special Groups of People (Meanings of Pain, 3)

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. Preface 5 Contents 7 Chapter 1: Conceptualising Pain in Critically Ill Neonates or Infants 8 1 Introduction 9 2 Do Neonates or Infants Have a Concept of Pain? 11 3 The Meaning of Neonatal or Infant Pain in Health Professionals 12 4 Intrinsic Factors that Influence the Meaning of Neonatal or Infant Pain 13 5 The Meaning of Neonatal or Infant Pain in Parents 16 6 Meanings of Neonatal or Infant Pain and Implications for Management 17 7 Signals of Pain 17 8 Craig ́s Social Communications Model of Pain and the Concept of Pain 20 9 Conclusions 21 References 22 Chapter 2: Pain in the Fetus and the Preterm Baby 24 1 Introduction: The Meaning of Pain 24 2 What Is the Fetus and the Newborn Baby? 25 3 The Fetus and the Newborn Feel Pain 27 4 Consequences of Untreated Pain Later in Life 28 5 False Myths: Neuro-Inhibitors and Immaturity of the Cortex 29 6 How Is Fetal and Neonatal Pain Measured? 30 7 What Qualities of Pain Can the Fetus Experience and What ``Meanings of Pain ́ ́ Are Open to the Fetus? 31 8 Fetal ``Experience ́ ́ of Pain 33 9 What Is the Meaning of Fetal-Neonatal Pain for the Subject and Their Caregivers? 35 10 Conclusion 36 References 36 Chapter 3: Developmental Influences on the Meanings of Pain in Children 40 1 Meanings Change Over Time 41 2 A Child ́s Experience Affects Their Concept of Pain 43 3 What Do We Know About the Meaning of Pain in Disadvantaged and Vulnerable Children? 45 4 What Do We Know About the Assessment of Pain in Children, Given Their Linguistic Competence? 45 5 Clinical and Research Implications 47 6 Conclusion 48 References 49 Chapter 4: ``Ooh, You Got to Holler Sometime: ́ ́ Pain Meaning and Experiences of Black Older Adults 52 1 Pain and the Black Older Adult 53 2 Structural Racism as a Context to Black Pain Experiences 54 3 Medical Mistrust 55 4 Chronic Pain Dimensions and Linkages to Structural Racism 57 5 Spiritual Coping as a Culturally Mediated Pain Resource 57 6 Chronic Pain and Depression 58 7 Pain Catastrophizing, Mood, and Coping 60 8 Living with Pain 61 9 Improving Pain Management in Black Older Adults 62 10 Future Research and Practice Directions 63 10.1 Community Health Worker-Led Pain Interventions 65 10.2 Cognitive-Behavioral Therapy 66 References 67 Chapter 5: Exploring the Meaning of Chronic Low Back Pain as a Life of ``Living Death ́ ́ in Rural Nigeria 72 1 Introduction 73 1.1 Background 73 1.2 Aims of the Study 75 1.3 Methodological Considerations 75 1.3.1 Qualitative Research Foundations 75 1.3.2 Reflexivity and the Role of the Researcher in Qualitative Research 77 1.3.3 The Researcher ́s Orientation 77 2 Methods 78 2.1 Design 78 2.2 Ethical Considerations 78 2.3 Study Setting 78 2.4 Participant Recruitment 78 2.5 Procedure 79 2.6 The Framework Approach to Qualitative Research 79 2.7 Qualitative Data Management and Analysis 80 3 Results 81 3.1 Participants 81 3.2 Analytical Themes 81 3.2.1 The Meanings and Characterisations of CLBP as a Life of ``Living Death ́ ́ in Rural Nigeria 81 3.3 The Role of the Perception of CLBP as a Life of ``Living Death ́ ́ in the Previously Developed Model of Chronic Low Back Pai... 85 4 Discussion 87 4.1 Summary and Interpretation of Findings 87 5 Conclusions 90 References 90 Chapter 6: Painworld: A Phenomenological View of Veteran Experiences of Living with Chronic Pain 94 1 Introduction 95 2 Ethnographic Exploration at a New England VA Medical Center 97 3 Common Veteran Illnesses and Experiences 100 3.1 The Beginning of the Chronic Pain Illness Narrative 100 3.2 Finding Support Among ``The Guys ́ ́ 102 3.3 Reaching Acceptance of a Pain-Full Life 103 4 Formation of a Painworld Among Veterans 105 4.1 VA Pain Care: Biomedicine Meets Complementary and Integrative Health Care 105 4.2 Improving Patient-Provider-Peer Communication 108 5 Conclusion 110 References 111 Chapter 7: ``It ́s Just One of Them Things You ́ve Got to Try and Manage ́ ́: Meanings of Pain for People with Brain Injury 113 1 Long-Term Pain in People with Brain Injury 114 2 Meaning: Our Communication Highway 115 3 Meaning of Pain in ABI: Who Knows? 117 4 Acquired Brain Injury 117 5 Pain 119 6 Pain in Acquired Brain Injury 120 7 Meaning, Identity, and Psychosocial Adjustment 124 8 Benefit-Finding, Post-Traumatic Growth, and Resilience 126 9 Asking Those in the Know 128 10 Julie ́s Story 129 10.1 The Stroke: A Painful Journey 129 10.2 Learning to Live with It: Get Tuned into Your Own Body 131 10.3 It Is All a Bit of Trial and Error 132 10.4 Do Not Let It Stop You! 134 10.5 Adjusting to a New Identity 134 10.6 They Are Close Friends, It Is Not a Big Deal 135 10.7 More than Just a Therapeutic Relationship 135 10.8 The Pain Is My Brain Injury 136 11 Mark ́s Story 137 11.1 The Accident Leading to Brain Injury 137 11.2 If It Does Not Hurt You, It Is Not Pain 137 11.3 I Do Not Let It Stop Me 138 11.4 You Only Live Once 139 12 What Have We Learned from Julie and Mark? 140 13 Clinical Recommendations and Future Research 144 14 Conclusion 148 References 149