A Family Companion
This resource seeks to support parents and carers in their role as champions and decision-makers for their child, with each section exploring stages of your child’s illness and what you might expect.
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This resource seeks to support parents and carers in their role as champions and decision-makers for their child, with each section exploring stages of your child’s illness and what you might expect.
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This form allows carers to document all the relevant care teams contact details in the one place
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When your child is diagnosed you may have many questions or concerns. You may find this booklet helpful to write them down.
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Young people just like you who have been through the transition to the adult health care system have helped us put this document together, because its what they wished they had when they transitioned. And they want you to know that even though it might feel like you cant do it – you can.
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This fact sheet provides carers with information on the different settings where their child can be cared for such as home, hospital and hospices.
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This fact sheet provides carers with information on the importance of the types of decisions and plans that need to be made when caring for a child living with a life limiting illness
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This fact sheet provides carers with strategies on how to look after themselves whist caring for a child with a life limiting illness.
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This fact sheet is designed to provide carers with information on managing relationships, coping strategies and where to source support while caring for a child with life-limiting illness.
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This form allows carers to document a plan to manage any symptoms the child with a life limiting illness may experience
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Telehealth communication provides easy access to your specialist team for support, assessment, and connection. This information sheet has been written to help you to get the most out of your online video calls.
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This fact sheet will provide carers with information to share with family and friends on how to support them whilst they care for a child with a life limiting illness
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Being the friend of someone who has or has had cancer is not always easy. It can be scary and confusing and throw you way out of your comfort zone. This booklet is here to help you understand that a friend with cancer is still your friend… and that they will find it helpful just to have you there with them…
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This book is designed to help you get a handle on some of what is going on and give you some tips and encouragement for dealing with the massive challenges that your cancer diagnosis has thrown at you.
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This book is here to try and start the hard conversations and help you bring things out into the open. Because when you know and understand some of the things that may happen, it can help you “prepare” for them, as horrible as it may seem.
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In this module we hear from Tara, Melissa, Priyanka and Rachael and Jonny. They will each share with you the top things they want you to know – from one paediatric palliative care parent to another.
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This video highlights the beauty and burdens of parenting a child living with a life limiting condition. The content has been provided from direct quotes from parent interviews.
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In this module you hear how Tara, Melissa, Priyanka and Rachael and Jonny navigated their everyday life whilst caring for their child has a life limiting or terminal diagnosis. They cover topics such as the balance between being a carer and a parent, returning to work and how they found comfort during this difficult time.
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In this episode we hear from families drawing upon their real-life experiences to answer the question "What do you want the world to know about your child?"
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In this video two mothers reflect on their experiences whilst caring for their child receiving paediatric palliative care and provide some suggestions on how to practice self-care.
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In this episode two families recall their experiences of caring for their children, and consider what hope and spirituality mean to them, and how their views may change over time.
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In this module we hear from Tara, Melissa, Priyanka and Rachael and Jonny on how they used their voices to advocate for their babies and tips for how they navigate the never-ending goal posts of having an infant with a life limiting or terminal diagnosis.
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In this module we hear from Jonny who shares the treasured moments he spent with his daughter Mackenzie, the memories they created, the time they spent as a family, the role of dads and being the partner in a support role.
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This video shares Joseph’s story and his family’s experience of paediatric palliative care following his diagnosis with a severe epileptic condition at just three months old.
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In this episode two parents share how they approached conversations with their children: they share with us what worked, what was challenging, and how they keep the memory of their child alive in the family.
Read MoreWe recognise and acknowledge those who are working through Sorry Business, Sad News, grief and bereavement and offer our condolences and support.
Aboriginal and Torres Strait Islander peoples are advised that this website may contain images, videos and voices of people who have passed on. Some of the content and topics covered might also cause distress. You are welcome here, and we want you to feel safe and take care.
If you find that you need support please reach out to 13YARN on 13 92 76, Grief Australia, Grief Line on 1300 845 745, or Lifeline on 13 11 14.
Palliative Care Australia is located in Canberra. We acknowledge the traditional custodians of the surrounding land and waters, the Ngunnawal and Ngambri Peoples and pay our respects to Elders past and present. We extend that same respect and acknowledge the continuing cultures and contribution of Aboriginal and Torres Strait Islander Peoples across Australia.
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