Providing Support at Home for Children and Young People who have Complex Health Needs

by Hewitt-Taylor, Jaquelina

• ISBN13: 9780470517314
• ISBN10: 047051731X
• Edition: 1st
• Format: Paperback
• Copyright: 2008-07-14
• Publisher: WILEY

Summary

Providing Support at Home for Children and Young People who have Complex Health Needs discusses elements of providing support in the home, which influence the quality of provision. This includes: the rationale for providing support at home, the child being central to the provision of support, taking into account the needs of the whole family, working closely with parents, working in the family home, choices and rights, supporting adolescents, team working, ethical issues, political and organisational issues. Case studies are used to illustrate the points raised.

Author Biography

Jaquelina Hewitt-Taylor, PhD BA (Hons) RSCN RGN
Jaqui Hewitt-Taylor works as a Practice Development Fellow for Children with Complex and Continuing Health Needs. Her work includes developing and evaluating education and training opportunities for staff (including health care support workers, pre registration student nurses and Registered Nurses).

Table of Contents

Preface	p. xi
Children and Young People who have Complex and Continuing Health Needs	p. 1
Definitions	p. 1
Providing Care at Home	p. 4
Economic Issues	p. 6
The Best Option for Individuals	p. 7
Achieving Home Care	p. 8
Putting the Child or Young Person First	p. 10
Quality of Life	p. 11
The Child or Young Person's Priorities, Preferences and Choices	p. 12
Communication	p. 14
Play	p. 18
Social Opportunities and Leisure Activities	p. 21
Education	p. 22
The Right to Privacy	p. 26
Developing Independence	p. 27
Summary	p. 28
The Child or Young Person as a Part of the Family	p. 29
Family	p. 29
Parenting	p. 30
Being the Parent of a Child who has Complex Needs	p. 32
Expert Parents	p. 35
The Impact of having a Child who has Complex Needs	p. 37
Social Opportunities	p. 40
Employment and Finances	p. 42
Relationships Between Parents	p. 43
Effects on the Family	p. 44
The Impact of the Child's Needs on their Siblings	p. 47
The Impact of the Child's Needs on the Extended Family	p. 49
Summary	p. 50
Working with Parents	p. 52
Negotiation	p. 52
Building Relationships	p. 54
Respect	p. 56
Respect for Parents' Responsibility for their Child	p. 57
Trust	p. 58
Boundaries in Professional Relationships	p. 60
Working with Parents who are Experts	p. 63
Enabling and Supporting Parents to Access and Accept Support	p. 66
Understanding and Working with the Family's Expectations	p. 67
Summary	p. 69
Working in the Family Home	p. 70
Being a Visitor in One's own Workplace	p. 70
Intrusion Versus Support	p. 71
Staff Safety and Well-being in the Workplace	p. 76
Confidentiality	p. 79
Summary	p. 81
Supporting Young People	p. 83
Developing Independence	p. 83
Risk Taking	p. 86
Developing Peer Relationships	p. 89
Image and Identity	p. 90
Sexuality and Sexual Expression	p. 91
Further Education	p. 94
Preparing for Employment	p. 95
Transition to Adult Services	p. 96
Summary	p. 99
Grief, Loss and Bereavement	p. 100
Grief and Loss for Children and Young People	p. 100
Sources of Loss for Parents	p. 104
Sources of Loss for other Family Members	p. 109
Theories of Grief, Loss and Bereavement	p. 110
Children and Young People's Concepts of Death	p. 112
Families Living with Loss	p. 115
Supporting Families who Experience Loss	p. 117
Loss for Healthcare Staff	p. 119
Summary	p. 120
Choices and Rights	p. 121
Children's Rights	p. 121
Autonomy	p. 122
Autonomy and Healthcare	p. 125
Competence in Decision Making	p. 127
Consent	p. 129
Empowerment	p. 131
Advocacy	p. 133
Child Protection	p. 136
Equality and Disability Rights	p. 138
Summary	p. 139
Ethical Issues Involved in Supporting Children, Young People and their Families	p. 141
Morals and Ethics	p. 142
Promoting Health	p. 142
Ethical Principles	p. 145
Duties of Healthcare Professionals	p. 151
Fidelity	p. 154
Responsibility	p. 154
Summary	p. 155
Organisational Issues	p. 157
Support	p. 157
Determining what is Needed	p. 159
Joined-up Assessment	p. 161
Collaborative Working	p. 162
The Key Worker	p. 166
Organising Care Packages	p. 167
Independent Funding Options	p. 169
Short-Break Services	p. 170
Summary	p. 172
Working with Children, Young People and Their Families	p. 174
Seeing the Child or Young Person First	p. 174
The Child or Young Person as a Part of their Family	p. 176
Working in the Family Home	p. 177
Supporting Young People	p. 178
Decision Making and Finite Resources	p. 179
Useful Resources	p. 181
References	p. 185
Index	p. 199
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