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.

Section 1 – Introduction 
The Introduction outlines the purpose of Journeys and encourages the reader to adapt the information to suit their own needs.

This section includes special notes for:

• families living in rural and remote areas
• families from culturally diverse backgrounds
• Indigenous families.

It also includes the definitions of words families may come across during their journey.

To download the Resource list for Section 1, click here.

Section 2 – Getting Ready 
When a child is diagnosed with a suspected life limiting condition, the search for answers and information begins.

To help families prepare for what lies ahead, this section:

• looks at the early information needs many families have
• outlines what families can expect to receive from palliative care
• describes the roles of the different health professionals
• provides hints on how to find reliable health information about the child’s condition and on understanding treatment options
• includes information on patient and carer rights and responsibilities
• provides information on accessing financial support.

To download the Resource list for Section 2, click here.

To download the Tools:

Tool 1 – Contact list of your care tem click here

Tool 2 – Your questions click here

Section 3 – On the Road 
As families learn more about their child’s illness and see changes in their health and wellbeing, they are drawn further into the journey.

This section helps families find the best way forward by:

• exploring the options and choices available in caring for a child
• providing tips on care planning and managing the symptoms of the child’s condition.

 This section also focuses on emotional support for the family. It:

• describes the feelings of loss and grief that family members may experience
• contains suggestions for recording special moments
• looks at ways for parents to support themselves, their children, partners and other family members
• contains advice about seeking support from others
• explores spiritual issues.

 To download the Resource list for Section 3, click here.

To download the Tools:

Tool 3 – Sample care plan click here

Tool 4 – Sample medicines chart click here

Tool 5 – Some ways you can help click here

 Section Four – The Next Leg 
For some families, their journey takes them to a place where they must confront issues concerning dying, death and bereavement. This section explores these sensitive issues and guides families along this unknown path.

This section includes chapters on bereavement support, making memories and celebrating anniversaries. It contains:

• suggestions for talking to children about dying and death
• information on emotional and bereavement support for the child, their parents, siblings, grandparents, friends and community
• information on end of life decisions families should consider
• options for funerals
• a brief description of the dying process
• detailed information about what to do when a child dies.

 To download the Resource list for Section 4, click here.

To download the Tools:

Tool 6 – Selecting a funeral director click here

Tool 7 – Some common symptoms of grief

(for family members) click here

Tool 8 – Tips to help you through your grief

(for parents and grandparents) click here

Tool 9 – How to support someone who is grieving the loss of their child

(for family and friends) click here

Tool 10 – Ten rights for grieving children

(for siblings, parents and teachers) click here

Tool 11 – Notes for grieving children and teenagers click here

Tool 12 – Dealing with grieving students in your class

(for teachers) click here

Tool 13 – Help for the holidays click here

To register to download a copy of Journeys – Palliative Care for Children and Teenagers, click here.

 For those already registered, click here to login.

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