Nursing Care of Children and Young People with Chronic Illness (eBook)

Fay Valentine is Director of the Children and Young People's Directorate in the School of Nursing and Midwifery Studies, Cardiff University. She has a long history of working with children and young people with chronic illness. Her specialist interests are leadership, adolescence and chronic illness. She is the Welsh representative on the RCN Children and Young People's Advisory Panel, a member of the all-Wales Senior Children's Nursing Forum and committee member for the Welsh Nursing and Midwifery Council. Lesley Lowes is a Research Fellow/Practitioner at the Research, Health and Social Care Research Centre, School of Nursing and Midwifery Studies, Cardiff University. She is an experienced qualitative researcher, whose research interests include childhood chronic illness (diabetes in particular), theories of loss, grief, adaptation and change, and the involvement of service users in health and social care research. She has an extensive clinical and academic publication portfolio, particularly in the field of paediatric diabetes. In addition to her academic work, she has a 50% clinical remit as a paediatric diabetes specialist nurse with Cardiff and Vale NHS Trust.

Nursing Care of Children and Young People with Chronic Illness 1
Contents 7
Foreword 13
Contributors 14
Introduction 17
Chapter1 The Definition and Aetiology of Chronic Illness 21
Introduction 21
Aim of the chapter 21
Intended learning outcomes 22
Genetic knowledge 22
The need for genetic knowledge 23
The ethical, legal and social implications in the screening, testing and recording of genetic information 23
The determinants of genetic disease 25
Chromosomal abnormalities 25
Chromosomal nomenclature 27
Single gene (Mendelian) disorders 28
Autosomal recessive inheritance 29
Autosomal dominant inheritance 30
X-linked recessive inheritance 31
X-linked dominant inheritance 32
Inherited variations 32
Antenatal period 35
The neonatal period 38
Post-neonatal period 39
Adolescent period 43
Conclusion 44
Useful websites 45
References 46
Chapter2 Context of Care and Service Delivery 49
Introduction 49
Aim of the chapter 49
Intended learning outcomes 50
Context of change 50
Political influences 50
Economic influences 52
Social influences 52
New models of service delivery 54
Modernising workforce 56
Increasing patient expectations and engagement 58
Locally based commissioning 59
Staffing implications 60
Staff education and competence 61
Meeting parental needs 62
Innovative practices-- new roles 64
Telemedicine 65
Key worker role 66
Mental health issues 67
Multi-agency working 68
Multidisciplinary team (MDT) working 69
Nursing implications, challenges and opportunities in MDT working 70
Conclusion 70
Useful websites 71
References 71
Chapter3 Impact upon the Child and Family 75
Introduction 75
Aim of the chapter 75
Intended learning outcomes 76
Theories of grief, loss and change 76
Initial impact 81
Type 1 diabetes 81
Impact on parents 82
Impact on the child/young person with chronic illness 83
Continuing care 86
Impact on siblings 86
Coping, adaptation and change 89
Theories of stress and coping 89
Coping strategies 91
Normalisation 93
Conclusion 98
Acknowledgement 99
Useful websites 99
Recommended reading 99
References 99
Chapter4 A Holistic Approach to Meeting Physical, Social and Psychological Needs 104
Introduction 104
Aim of the chapter 104
Intended learning outcomes 105
Prevalence of eczema 105
Nursing considerations 106
Presentation of eczema 107
Treatment of eczema with emollients 107
Effects of the itch scratch cycle 109
Family stress and coping 110
Assessment and immediate intervention 112
Current care management plan 113
Pain assessment 114
Play and distraction 116
Bullying 116
Spirituality 119
Complementary and alternative medicine 121
Health promotion 122
Conclusion 123
Acknowledgement 124
Useful websites 124
Recommended reading 124
References 124
Chapter5 Empowering Children, Young People and their Families 127
Introduction 127
Aim of the chapter 127
Intended learning outcomes 128
Health promotion 128
Empowerment 131
Approaches to health promotion 132
Parental smoking 135
Obesity 136
Non-compliance 142
Steroids 142
Restraint 143
Conclusion 146
Useful websites 147
References 147
Chapter6 Ethical Issues 151
Introduction 151
Aim of the chapter 151
Intended learning outcomes 152
Why study ethics? 152
A definition of ethics 152
Introduction to ethical theories 153
Theory of consequentialism 153
Utilitarianism 154
Act utilitarianism 154
Rule utilitarianism 155
Theory of deontology 158
Ethical principles 160
Principle of autonomy 161
Ethical principle of beneficence 164
Ethical principle of non-maleficence 166
Ethical principle of justice 168
A nursing ethic 169
Definition of an ethical dilemma 170
Ethical decision making 171
A suggested model for ethics in practice/decision making 172
Conclusion 174
Useful websites 174
Recommended reading 175
References 175
Chapter7 Continuing Care Needs 177
Introduction 177
Aim of the chapter 177
Intended learning outcomes 177
Complex health needs 178
Transition to home care 185
Continuing care policy 188
Framework for assessment of children in need 189
National Service Framework for Children, Young People and Maternity Services 189
Carers' assessments 189
Identifying an appropriate care package 190
Key worker role 190
Community children's nursing services 192
Provision of equipment for home care 193
Respite care 194
Home adaptations 196
Education 196
Support for families 197
Conclusion 197
Useful websites 198
Support groups 198
References 199
Chapter8 Acute Emergencies 203
Introduction 203
Aim of the chapter 203
Intended learning outcomes 203
Acute emergencies 204
Aetiology 205
Environmental factors 206
Pathophysiology 207
Presentation 208
Prognosis 209
Treatment 210
Administration of chemotherapy 212
Central venous access devices 213
Sepsis 216
Children's critical care 217
Family focused care 217
Multidisciplinary working across different organisations 218
Conclusion 219
Useful websites 220
References 220
Chapter9 Adolescence 223
Introduction 223
Aim of the chapter 223
Intended learning outcomes 224
Adolescent knowledge 224
Why nurses need knowledge of adolescence 225
Brief overview of adolescent development 225
Understanding chronic illness from a young person's perspective 226
Chronic renal failure 227
Communicating with young people 230
Communication issues for Thomas 231
Peer groups 233
The impact of chronic illness on growth and development 234
Delayed growth and puberty 235
Inconsistencies between physical and psychological development 235
Body image and self-esteem 236
Compliance and non-compliance 237
The social aspects of chronic illness 240
Young people, chronic illness and school 240
Bullying 242
The hospitalised adolescent 243
Issues for young people in hospital 244
Specialised adolescent units 245
Service delivery and adolescent health 247
Promoting excellence 247
The role of the nurse 248
Conclusion 249
Useful websites 249
Recommended reading 250
References 250
Chapter10 Transitional Care 254
Introduction 254
Aim of the chapter 254
Intended learning outcomes 254
Overview of cystic fibrosis 255
Management 257
Transitional care 258
Issues regarding transition for adolescents 260
Gaining autonomy 262
Managing a chronic illness 262
Support and decision making 263
The role of the nurse 264
Promoting the paradigm shift 267
The principles of successful transitional care 268
Conclusion 272
Useful websites 273
Recommended reading 273
References 273
Index 276

'This is an invaluable source of information about differing
perspectives in chronic illness for those working in primary or
secondary care. It is also recommended for those undertaking
pre-qualifying and post-qualifying children's nursing courses. It
is an essential read for practitioners at a reasonable
price.'

Nursing Standard, vol 22, November 2007