Contents

1. Acknowledgements
2. Introduction
   1. About Bettercare
   2. Why decentralised learning?
   3. Free Bettercare Online Learning Platform
   4. Learning programmes
   5. Format of the courses
   6. Contributors
   7. Updating the course material
   8. Contact information
   9. Registration
3. 1 The principles and practice of palliative care for children
   1. Contents
   2. Objectives
   3. Introduction to palliative care for children
   4. The continuum of care
   5. Categories of childhood illnesses needing palliative care
   6. Places where palliative care can be provided
   7. Levels of care
   8. Case studies
4. 2 Ethics and decision making
   1. Contents
   2. Objectives
   3. Medical ethics in children’s palliative care
   4. Ethical dilemmas
   5. Making decisions for children in palliative care
   6. Making an ethical plan
   7. Case studies
5. 3 Communication
   1. Contents
   2. Objectives
   3. Good communication
   4. Difficult conversations and breaking bad news
   5. Communicating with children
   6. Talking to children about illness and death
   7. Electronic communication
   8. Case studies
6. 4 Teamwork, managing conflict and self-care
   1. Contents
   2. Objectives
   3. Understanding the basics of the team and teamwork
   4. Managing conflict
   5. Referral pathways
   6. Self-awareness, debriefing and self-care
   7. Self-care
   8. Case studies
7. 5 Holistic assessment and palliative care planning
   1. Contents
   2. Objectives
   3. Holistic assessment
   4. The assessment process
   5. Care planning
   6. Care plans
   7. The palliative care plan
   8. Advance care planning
   9. Terminal care plans
   10. Case study
8. 6 Psychosocial care and support
   1. Contents
   2. Objectives
   3. Assessing a child’s psychosocial needs
   4. The right to continuing education
   5. The role of the community in children’s palliative care
   6. The role of the family in children’s palliative care
   7. The need to support the siblings
   8. Principles of relating with the child and the family
   9. Case studies
9. 7 Cultural understanding and spiritual care
   1. Contents
   2. Objectives
   3. Assessing culture
   4. Spirituality and spiritual care
   5. Assessing spirituality
   6. Planning and providing spiritual care for children
   7. Case studies
10. 8 Pain management
    1. Contents
    2. Objectives
    3. Introduction to pain
    4. Types of pain
    5. Pain assessment in children
    6. Pain management in children
    7. Morphine use in children
    8. Management of specific pains
    9. Case studies
11. 9 Management of respiratory and gastrointestinal symptoms
    1. Contents
    2. Objectives
    3. Signs and symptoms
    4. General approach to symptom management in children
    5. Managing shortness of breath
    6. Managing excessive respiratory secretions
    7. Managing nausea and vomiting
    8. Managing constipation
    9. Case study
12. 10 Management of neurological, nutritional and skin symptoms
    1. Contents
    2. Objectives
    3. Managing anxiety
    4. Managing depression
    5. Managing fatigue
    6. Managing anorexia and cachexia
    7. Managing pruritus
    8. Preventing and managing pressure sores
    9. Managing fungating malodourous wounds
    10. Case studies
13. 11 End-of-life care
    1. Contents
    2. Objectives
    3. Introduction to end-of-life care
    4. End-of-life planning
    5. Managing distressing symptoms at the end-of-life
    6. Management at the end-of-life
    7. Supporting the family at the end-of-life
    8. Case studies
14. 12 Loss, grief and bereavement
    1. Contents
    2. Objectives
    3. Introduction to loss, grief, mourning and bereavement
    4. The grief process
    5. Supporting families in their grief and bereavement
    6. Children and grief
    7. Supporting children after death
    8. Memory making
    9. Case studies
15. Appendix A: The International Children’s Palliative Care Network (ICPCN) charter of rights for life-limited and life-threatened children
16. Appendix B: Communication role plays
17. Appendix B1: Communication assessment tool
18. Appendix B2: Self-reflection tool
19. Appendix C: Debriefing model
20. Appendix D: Palliative care plan
21. Appendix E: PatchSA Advance care plan
22. Appendix F: Using the QUESTT approach to assess the child
23. Appendix G: Age appropriate pain rating scales
24. Appendix H: Drug formulary
25. Appendix I: Instructions for inserting and caring for a butterfly needle for a subcutaneous infusion
26. Appendix J: PatchSA terminal care plan and end-of-life care plan checklist