9781405144025

Table of Contents


	Foreword	xi
	Contributors	xii
	Introduction	xv
Chapter 1	The Definition and Aetiology of Chronic Illness Fay Valentine and Suzanne Hazell	1
	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	3
	The Determinants of Genetic Disease	5
	Chromosomal Abnormalities	5
	Chromosomal Nomenclature	7
	Single Gene (Mendelian) Disorders	8
	Autosomal Recessive Inheritance	9
	Autosomal Dominant Inheritance	10
	X-Linked Recessive Inheritance	11
	X-Linked Dominant Inheritance	12
	Inherited Variations	12
	Antenatal Period	15
	The Neonatal Period	18
	Post-Neonatal Period	19
	Adolescent Period	23
	Conclusion	24
	Useful Websites	25
	References	26
Chapter 2	Context of Care and Service Delivery Fay Valentine and Peter Mcnee	29
	Introduction	29
	Aim of the Chapter	29
	Intended Learning Outcomes	30
	Context of Change	30
	Political Influences	30
	Economic Influences	32
	Social Influences	32
	New Models of Service Delivery	34
	Modernising Workforce	36
	Increasing Patient Expectations and Engagement	38
	Locally Based Commissioning	39
	Staffing Implications	40
	Staff Education and Competence	41
	Meeting Parental Needs	42
	Innovative Practices - New Roles	44
	Telemedicine	45
	Key Worker Role	46
	Mental Health Issues	47
	Multi-Agency Working	48
	Multidisciplinary Team (MDT) Working	49
	Nursing Implications, Challenges and Opportunities in MDT Working	50
	Conclusion	50
	Useful Websites	51
	References	51
Chapter 3	Impact Upon the Child and Family Lesley Lowes	55
	Introduction	55
	Aim of the Chapter	55
	Intended Learning Outcomes	56
	Theories Of Grief, Loss and Change	56
	Initial Impact	61
	Type 1 Diabetes	61
	Impact on Parents	62
	Impact on the Child/Young Person with Chronic Illness	63
	Continuing Care	66
	Impact on Siblings	66
	Coping, Adaptation and Change	69
	Theories of Stress and Coping	69
	Coping Strategies	71
	Normalisation	73
	Conclusion	78
	Acknowledgement	79
	Useful Websites	79
	Recommended Reading	79
	References	79
Chapter 4	A Holistic Approach to Meeting Physical, Social and Psychological Needs Beverly Hodges and Julia Tod	84
	Introduction	84
	Aim of the Chapter	84
	Intended Learning Outcomes	85
	Prevalence of Eczema	85
	Nursing Considerations	86
	Presentation of Eczema	87
	Treatments of Eczema with Emollients	87
	Effects of the Itch Scratch Cycle	89
	Family Stress and Coping	90
	Assessment and Immediate Intervention	92
	Current Care Management Plan	93
	Pain Assessment	94
	Play and Distraction	96
	Bullying	96
	Spirituality	99
	Complementary and Alternative Medicine	101
	Health Promotion	102
	Conclusion	103
	Acknowledgement	104
	Useful Websites	104
	Recommended Reading	104
	References	104
Chapter 5	Empowering Children, Young People and Their Families Mandy Brimble	107
	Introduction	107
	Aim of the Chapter	107
	Intended Learning Outcomes	108
	Health Promotion	108
	Empowerment	111
	Approaches to Health Promotion	112
	Parental Smoking	115
	Obesity	116
	Non-Compliance	122
	Steroids	122
	Restraint	123
	Conclusion	126
	Useful Websites	127
	References	127
Chapter 6	Ethical Issues Peter Mcnee and Maggie Furness	131
	Introduction	131
	Aim of the Chapter	131
	Intended Learning Outcomes	132
	Why Study Ethics?	132
	A Definition of Ethics	132
	Introduction to Ethical Theories	133
	Theory of Consequentialism	133
	Utilitarianism	134
	Act Utilitarianism	134
	Rule Utilitarianism	135
	Theory of Deontology	138
	Ethical Principles	140
	Principle of Autonomy	141
	Ethical Principle of Beneficence	144
	Ethical Principle of Non-Maleficence	146
	Ethical Principle of Justice	148
	A Nursing Ethic	149
	Definition of an Ethical Dilemma	150
	Ethical Decision Making	151
	A Suggested Model for Ethics in Practice/Decision Making	152
	Conclusion	154
	Useful Websites	154
	Recommended Reading	155
	References	155
Chapter 7	Continuing Care Needs Melda Price and Sian Thomas	157
	Introduction	157
	Aim of the Chapter	157
	Intended Learning Outcomes	157
	Complex Health Needs	158
	Transition to Home Care	165
	Continuing Care Policy	168
	Framework for Assessment of Children in Need	169
	National Service Framework for Children, Young People and Maternity Services	169
	Carers� Assessments	169
	Identifying an Appropriate Care Package	170
	Key Worker Role	170
	Community Children�s Nursing Services	172
	Provision of Equipment for Home Care	173
	Respite Care	174
	Home Adaptations	176
	Education	176
	Support for Families	177
	Conclusion	177
	Useful Websites	178
	Support Groups	178
	References	179
Chapter 8	Acute Emergencies Peter Mcnee and Martina Nathan	183
	Introduction	183
	Aim of the Chapter	183
	Intended Learning Outcomes	183
	Acute Emergencies	184
	Aetiology	185
	Environmental Factors	186
	Pathophysiology	187
	Presentation	188
	Prognosis	189
	Treatment	190
	Administration of Chemotherapy	192
	Central Venous Access Devices	193
	Sepsis	196
	Children�s Critical Care	197
	Family Focused Care	197
	Multidisciplinary Working Across Different Organisations	198
	Conclusion	199
	Useful Websites	200
	References	200
Chapter 9	Adolescence Si�n Bill and Yvonne Knight	203
	Introduction	203
	Aim of the Chapter	203
	Intended Learning Outcomes	204
	Adolescent Knowledge	204
	Why Nurses Need Knowledge of Adolescence	205
	Brief Overview of Adolescent Development	205
	Understanding Chronic Illness from a Young Person�s Perspective	206
	Chronic Renal Failure	207
	Communicating with Young People	210
	Communication Issues for Thomas	211
	Peer Groups	213
	The Impact of Chronic Illness on Growth and Development	214
	Delayed Growth and Puberty	215
	Inconsistencies Between Physical and Psychological Development	215
	Body Image And Self-Esteem	216
	Compliance and Non-Compliance	217
	The Social Aspects of Chronic Illness	220
	Young People, Chronic Illness and School	220
	Bullying	222
	The Hospitalised Adolescent	223
	Issues for Young People in Hospital	224
	Specialised Adolescent Units	225
	Service Delivery and Adolescent Health	227
	Promoting Excellence	227
	The Role of the Nurse	228
	Conclusion	229
	Useful Websites	229
	Recommended Reading	230
	References	230
Chapter 10	Transitional Care Si�n Bill and Beverly Hodges	234
	Introduction	234
	Aim of the Chapter	234
	Intended Learning Outcomes	234
	Overview of Cystic Fibrosis	235
	Management	237
	Transitional Care	238
	Issues Regarding Transition for Adolescents	240
	Gaining Autonomy	242
	Managing a Chronic Illness	242
	Support and Decision Making	243
	The Role of the Nurse	244
	Promoting the Paradigm Shift	247
	The Principles of Successful Transitional Care	248
	Conclusion	252
	Useful Websites	253
	Recommended Reading	253
	References	253
	Index	256