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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.
List 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
About the author
MANDY BRIMBLE, Senior Lecturer, Children and Young People's Nursing, School of Healthcare Sciences, Cardiff University, Cardiff, UK. She has worked as a Children's Nurse in general medicine and day surgery, and as the research and education lead in a children's hospice.
PETER MCNEE, Senior Lecturer, Children and Young People's Nursing, School of Healthcare Sciences, Cardiff University, Cardiff, UK. His main areas of teaching include the acquisition of clinical skills, paediatric critical care, and acute clinical care.
