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Nursing Care of Children and Young People with Long-Term Conditions. Edition No. 2

  • Book

  • 304 Pages
  • January 2021
  • John Wiley and Sons Ltd
  • ID: 5839410

The second edition of Nursing Care of Children and Young People with Long Term Conditions remains the only nursing-specific text on the care of paediatric patients with chronic illness. Written to meet the needs of nursing students and professionals alike, this comprehensive volume provides authoritative and up-to-date information on the context, theory, and practice of delivering holistic care to children and families in a range of health and social care settings.

Contributions from a team of experienced academics, educators, and practitioners offer valuable insight into the impact of chronic illness on children and parents, the practical implications of meeting their physical, psychological, and social needs, empowering them to be 'experts' in their care, and many more vital aspects of long-term paediatric care. This edition features new and revised content reflecting contemporary guidelines and evidence-based practice, including updated clinical case studies and a new chapter examining the impact of having a sibling with a long-term condition. Emphasising a multi-disciplinary approach to managing chronic illness, this important resource:

  • Provides numerous case studies and activities illustrating the application of theoretical principles and current evidence in nursing practice
  • Investigates the genetic basis of chronic illness and the differing onsets of long-term conditions
  • Discusses current political, economic, and social policies that are influencing healthcare for children and bringing challenges to managers and practitioners
  • Examines both classic and contemporary theories of grief, loss, coping, and adaptation Explores ethical, legal, and professional aspects of nursing children and young people with chronic illness
  • Addresses evolving nursing roles, the importance of acute emergency care, and the planning and delivery of effective transition from child to adult services

Nursing Care of Children and Young People with Long Term Conditions is required reading for student and registered children's nurses, as well as for practitioners in related health and social care disciplines.

Table of Contents

Contributors xiii

Introduction xvii

1 The Definition and Aetiology of Long-Term Conditions 1
Siân Bill and Angharad Dwynwen Barklam

Introduction 1

Aim of the chapter 1

Intended learning outcomes 2

Genetic knowledge 2

The need for genetic knowledge 3

The ethical, legal and social implications in the screening, testing and recording of genetic information 4

The determinants of genetic disease 5

Chromosomal abnormalities 6

Chromosomal nomenclature 8

Single gene (Mendelian) disorders 8

Autosomal recessive inheritance 9

Autosomal dominant inheritance 11

X-linked recessive inheritance 11

X-linked dominant inheritance 12

Inherited variations 12

Antenatal period 15

The neonatal period 17

Post-neonatal period 19

Adolescent period 22

Conclusion 23

Useful websites 24

References 25

2 Context of Care and Service Delivery 31
Peter McNee

Introduction 31

Aim of the chapter 31

Intended learning outcomes 31

Context of change 32

Political influences 32

Economic influences 33

Social influences 34

New models of service delivery 35

Modernising workforce 36

Increasing patient expectations and engagement 38

Locally based commissioning 39

Staffing implications 40

Staff education and competence 40

Meeting parental needs 42

Innovative practices - new roles 44

Telemedicine 45

Key worker role 45

Mental health issues 47

Multiagency working 47

Multidisciplinary team (MDT)/Interprofessional working (IPW) 48

Nursing implications, challenges and opportunities in MDT/IPW working 49

Conclusion 49

Acknowledgement 50

Useful websites 50

References 50

3 Impact upon the Child and Parents 55
Dawn Daniel and Mandy Brimble

Introduction 55

Aim of the chapter 55

Intended learning outcomes 56

Theories of grief, loss and change 56

Initial impact 60

Type 1 diabetes 60

Impact on parents 61

Impact on the child/young person with a long-term illness 62

Continuing care 65

Coping, adaptation and change 66

Theories of stress and coping 67

Coping strategies 68

Normalisation 69

Conclusion 74

Acknowledgement 75

Useful websites 75

References 75

4 Impact On Siblings 81
Amie Hodges, Daniel Kelly, and Julia Tod

Introduction 81

Aim of the chapter 81

Intended learning outcomes 82

The sibling relationship 82

Sibling identity 83

Sibling boundaries 83

Sibling interaction 84

Parental influence on the sibling relationship 85

The impact of a long-term condition on the sibling 86

A new diagnosis 86

Changes in family life for the sibling 87

Emotional labour 88

Sibling empathy and maturity 88

Siblings as carers 89

Young carers and carers’ assessment 90

Recognising the unmet needs of siblings 91

Conclusion 93

Useful websites 93

References 94

5 A Holistic Approach to Meeting Physical, Social and Psychological Needs 97
Amie Hodges and Julia Tod

Introduction 97

Aim of the chapter 97

Intended learning outcomes 98

Prevalence of eczema 98

Nursing considerations 99

Presentation of eczema 100

Treatment of eczema with emollients 101

Topical emollients 101

Safety 102

Effects of the itch scratch cycle 102

Family stress and coping 103

Assessment and immediate intervention 105

Current care management plan 106

Wet wraps 106

Topical steroids 107

Pain assessment 107

Antihistamines 109

Play and distraction 109

Bullying 110

Spirituality 112

Traditional complementary and alternative medicine 114

Health promotion 115

Conclusion 116

Useful websites 116

Recommended reading 117

References 117

6 Empowering Children, Young People and their Families 121
Mandy Brimble

Introduction 121

Aim of the chapter 121

Intended learning outcomes 122

Health promotion 122

Empowerment 125

Approaches to health promotion 126

Parental smoking 129

Obesity 131

Non‐compliance 135

Steroids 135

Restrictive physical interventions and therapeutic holding 136

Conclusion 139

Useful websites 140

References 140

7 Ethical Issues 145
Peter McNee

Introduction 145

Aim of the chapter 145

Intended learning outcomes 146

Why study ethics? 146

A definition of ethics 146

Introduction to ethical theories 147

Theory of consequentialism 147

Utilitarianism 148

Act utilitarianism 148

Rule utilitarianism 148

Theory of deontology 151

Ethical principles 154

Principle of autonomy 155

Ethical principle of beneficence 157

Issues 158

Ethical principle of non‐maleficence 159

Ethical principle of justice 161

A nursing ethic 162

Definition of an ethical dilemma 163

Ethical decision-making 164

A suggested model for ethics in practice/decision-making 166

Conclusion 167

Acknowledgement 167

Useful websites 168

Recommended reading 168

References 168

8 Children and Young People’s Continuing Care 171
Melda Price and Sian Thomas

Introduction 171

Aim of the chapter 172

Intended learning outcomes 172

Continuing care needs and integrated children services 172

Transition to home care 177

Blended diets 179

Children and young people’s continuing care 180

Identifying an appropriate care package 181

Key worker role/care coordinator 182

Community children’s nursing services 182

Provision of equipment for home care 184

Carers’ assessments 185

The need for respite or short break provision 186

Home adaptations 188

Education and support at school 188

Support for families 189

Conclusion 189

Useful websites 190

References 190

9 Acute Emergencies 193
Martina Nathan, Peter McNee, and Jane Davies

Introduction 193

Aim of the chapter 193

Intended learning outcomes 193

Acute emergencies 194

Aetiology 196

Environmental factors 196

Pathophysiology 197

Presentation 197

Prognosis 198

Treatment 200

Administration of chemotherapy 201

Central venous access devices 202

Sepsis 205

Children’s critical care 206

Family-focused care 207

Multidisciplinary working across different organisations 208

Conclusion 209

Useful websites 210

References 210

10 Adolescence 213
Siân Bill and Taryn Eccleston

Introduction 213

Aim of the chapter 213

Intended learning outcomes 214

Existing knowledge 214

Why nurses need knowledge of adolescence 214

Brief overview of adolescent development 215

Understanding long-term conditions from a young person’s perspective 216

Chronic kidney disease 217

Communicating with young people 220

Communication issues for Thomas 221

Peer groups 221

The impact of having a long-term condition on growth and development 224

Delayed growth and puberty 224

Inconsistencies between physical and psychological development 225

Body image and self-esteem 225

Compliance and non-compliance, concordance and co-production 227

The social aspects of having a long-term condition 228

Young people, long-term conditions and school 229

Bullying 230

The hospitalised adolescent 231

Issues for young people in hospital 232

Specialised adolescent units 234

Service delivery and adolescent health 235

Promoting excellence 236

The role of the nurse 236

Conclusion 237

Acknowledgement 237

Useful websites 238

Recommended reading 238

References 238

11 Transitional Care 243
Siân Bill and Amie Hodges

Introduction 243

Aim of the chapter 243

Intended learning outcomes 243

Overview of cystic fibrosis 244

Further complications 246

Genotype 246

Management 247

Adolescents with a long-term condition 247

Transitional care 248

The philosophy of transitional care 248

Models of transition 248

Issues regarding transition for adolescents 250

Gaining autonomy 252

Managing a long-term condition 252

Support and decision-making 252

The role of the nurse 254

Promoting the paradigm shift 257

The principles of successful transitional care 258

Conclusion 262

Useful websites 262

Recommended reading 262

References 263

Index 267

 

Authors

Mandy Brimble Cardiff University, Cardiff, UK. Peter McNee Cardiff University, Cardiff, UK.