Providing Support at Home for Children and Young People Who Have Complex Health Needs

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