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

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).

Providing Support at Home for Children and Young People Who Have Complex Health Needs 3
Contents 9
Preface 13
1 Children and Young People whohave Complex and Continuing Health Needs 15
Definitions 15
Providing Care at Home 18
Economic Issues 20
The Best Option for Individuals 21
Achieving Home Care 22
2 Putting the Child or Young Person First 24
Quality of Life 25
The Child or Young Person’s Priorities, Preferences and Choices 26
Communication 28
Play 32
Social Opportunities and Leisure Activities 35
Education 36
The Right to Privacy 40
Developing Independence 41
Summary 42
3 The Child or Young Person as a Part of the Family 43
Family 43
Parenting 44
Being the Parent of a Child who has Complex Needs 46
Expert Parents 49
The Impact of having a Child who has Complex Needs 51
Social Opportunities 54
Employment and Finances 56
Relationships Between Parents 57
Effects on the Family 58
The Impact of the Child’s Needs on their Siblings 61
The Impact of the Child’s Needs on the Extended Family 63
Summary 64
4 Working with Parents 66
Negotiation 66
Building Relationships 68
Respect 70
Respect for Parents’ Responsibility for their Child 71
Trust 72
Boundaries in Professional Relationships 74
Working with Parents who are Experts 77
Enabling and Supporting Parents to Access and Accept Support 80
Understanding and Working with the Family’s Expectations 81
Summary 83
5 Working in the Family Home 84
Being a Visitor in One’s own Workplace 84
Intrusion Versus Support 85
Staff Safety and Well-being in the Workplace 90
Confidentiality 93
Summary 95
6 Supporting Young People 97
Developing Independence 97
Risk Taking 100
Developing Peer Relationships 103
Image and Identity 104
Sexuality and Sexual Expression 105
Further Education 108
Preparing for Employment 109
Transition to Adult Services 110
Summary 113
7 Grief, Loss and Bereavement 114
Grief and Loss for Children and Young People 114
Sources of Loss for Parents 118
Sources of Loss for other Family Members 123
Theories of Grief, Loss and Bereavement 124
Children and Young People’s Concepts of Death 126
Families Living with Loss 129
Supporting Families who Experience Loss 131
Loss for Healthcare Staff 133
Summary 134
8 Choices and Rights 135
Children’s Rights 135
Autonomy 136
Autonomy and Healthcare 139
Competence in Decision Making 141
Consent 143
Empowerment 145
Advocacy 147
Child Protection 150
Equality and Disability Rights 152
Summary 153
9 Ethical Issues Involved in Supporting Children, Young People and their Families 155
Morals and Ethics 156
Promoting Health 156
Ethical Principles 159
Duties of Healthcare Professionals 165
Fidelity 168
Responsibility 168
Summary 169
10 Organisational Issues 171
Support 171
Determining what is Needed 173
Joined-up Assessment 175
Collaborative Working 176
The Key Worker 180
Organising Care Packages 181
Independent Funding Options 183
Short-Break Services 184
Summary 186
11 Working with Children, Young People and Their Families 188
Seeing the Child or Young Person First 188
The Child or Young Person as a Part of their Family 190
Working in the Family Home 191
Supporting Young People 192
Decision Making and Finite Resources 193
Appendix: Useful Resources 195
References 199
Index 213