When a child is diagnosed with a progressive life-limiting illness, a journey begins. Throughout this journey, children, families and carers will need information and support.

Journeys – Palliative care for children and teenagers is an information resource which aims to better prepare and equip families and carers for the many situations and issues they may face as they live with their child’s illness. It is a starting point in identifying where to look or who to go to for specific information and support which best meets their needs.

Journeys was written in consultation with specialist clinicians and families who have travelled this journey. This resource shares their combined knowledge and expertise and their desire to help others answer the questions they may not know to ask.

Journeys is specially designed in four modular sections, each containing a resource list relevant to the different stages of the journey. These lists contain telephone contact numbers, websites and other references such as books. The modular design of this resource allows families to approach each section of their journey when they feel they are ready.

 Journeys – Palliative care for children and teenagers - PDF full version 
Note - large file 10mb

Cover pages and acknowledgements - PDF

1. Introduction
Section 1 – Introduction - PDF

• Overview
• Additional notes for families
• Words and meanings
• Resources

2. Getting ready
Section 2 – Getting ready - PDF

• What is palliative care?
• Who provides palliative care?
• Reliable health information
• Treatment options
• Your rights and responsibilities
• Financial support
• Resources
• Tools
  • Contact list of your care team
  • Your questions

3. On the road
Section 3 – On the road - PDF

• Places to care for your child
• Care planning
• Symptom management
• Feelings of loss and grief
• Helping yourself
• Helping your children
• Helping your partner
• Helping and getting help from family and friends
• Helping your community help you
• Spiritual care and support
• Resources
• Tools
  • Sample care plan
  • Sample medicines chart
  • Some ways you can help

4. The next leg
Section 4 – The next leg - PDF

• Talking to children about dying and death
• End of life decisions
• Funeral planning
• The dying process
• What to expect in the weeks and months ahead
• Bereavement support
• Remembering your child
• Deciding on another baby
• Resources
• Tools
  • Selecting a funeral director
  • Some common symptoms of grief (for family members)
  • Tips to help you through your grief (for parents and grandparents)
  • How to support someone who is grieving the loss of their child (for family and friends)
  • Ten rights for grieving children (for siblings, parents and teachers)
  • Notes for grieving children and teenagers
  • Dealing with grieving students in your class (for teachers)
  • Help for the holidays

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