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 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.

Preface xi 1 Children and Young People who have Complex and Continuing Health Needs 1 Definitions 1 Providing Care at Home 4 Economic Issues 6 The Best Option for Individuals 7 Achieving Home Care 8 2 Putting the Child or Young Person First 10 Quality of Life 11 The Child or Young Person’s Priorities, Preferences and Choices 12 Communication 14 Play 18 Social Opportunities and Leisure Activities 21 Education 22 The Right to Privacy 26 Developing Independence 27 Summary 28 3 The Child or Young Person as a Part of the Family 29 Family 29 Parenting 30 Being the Parent of a Child who has Complex Needs 32 Expert Parents 35 The Impact of having a Child who has Complex Needs 37 Social Opportunities 40 Employment and Finances 42 Relationships Between Parents 43 Effects on the Family 44 The Impact of the Child’s Needs on their Siblings 47 The Impact of the Child’s Needs on the Extended Family 49 Summary 50 4 Working with Parents 52 Negotiation 52 Building Relationships 54 Respect 56 Respect for Parents’ Responsibility for their Child 57 Trust 58 Boundaries in Professional Relationships 60 Working with Parents who are Experts 63 Enabling and Supporting Parents to Access and Accept Support 66 Understanding and Working with the Family’s Expectations 67 Summary 69 5 Working in the Family Home 70 Being a Visitor in One’s own Workplace 70 Intrusion Versus Support 71 Staff Safety and Well-being in the Workplace 76 Confidentiality 79 Summary 81 6 Supporting Young People 83 Developing Independence 83 Risk Taking 86 Developing Peer Relationships 89 Image and Identity 90 Sexuality and Sexual Expression 91 Further Education 94 Preparing for Employment 95 Transition to Adult Services 96 Summary 99 7 Grief, Loss and Bereavement 100 Grief and Loss for Children and Young People 100 Sources of Loss for Parents 104 Sources of Loss for other Family Members 109 Theories of Grief, Loss and Bereavement 110 Children and Young People’s Concepts of Death 112 Families Living with Loss 115 Supporting Families who Experience Loss 117 Loss for Healthcare Staff 119 Summary 120 8 Choices and Rights 121 Children’s Rights 121 Autonomy 122 Autonomy and Healthcare 125 Competence in Decision Making 127 Consent 129 Empowerment 131 Advocacy 133 Child Protection 136 Equality and Disability Rights 138 Summary 139 9 Ethical Issues Involved in Supporting Children, Young People and their Families 141 Morals and Ethics 142 Promoting Health 142 Ethical Principles 145 Duties of Healthcare Professionals 151 Fidelity 154 Responsibility 154 Summary 155 10 Organisational Issues 157 Support 157 Determining what is Needed 159 Joined-up Assessment 161 Collaborative Working 162 The Key Worker 166 Organising Care Packages 167 Independent Funding Options 169 Short-Break Services 170 Summary 172 11 Working with Children, Young People and Their Families 174 Seeing the Child or Young Person First 174 The Child or Young Person as a Part of their Family 176 Working in the Family Home 177 Supporting Young People 178 Decision Making and Finite Resources 179 Appendix: Useful Resources 181 References 185 Index 199