Frequently Asked Paediatric Palliative Care Questions

There are a lot of common misconceptions about paediatric palliative care. Below are answers to some of the more frequently asked questions.

We hope this information will provide you with a better understanding of paediatric palliative care.

All about Paediatric palliative care

Paediatric palliative care is the care for a child with a life limiting condition. Paediatric Palliative Care starts at the child’s diagnosis throughout the child’s life, death and beyond into to the grieving process.   Care embraces physical, emotional, social and spiritual elements and focuses on quality of life for the child or young person and support for the whole family.   
Referrals to the paediatric palliative care team can be made by your childs treating team or doctor.   Early referral to the paediatric palliative care team will help build trust and a relationship with the team which improves decision making and the quality of life for your child and your family.  Paediatric palliative care can provide care and support from the time of diagnosis, throughout your child’s life, to end-of-life, and into bereavement. Paediatric palliative care also includes perinatal and neonatal palliative care, meaning the care of expectant mothers and families, and newborn babies. Paediatric palliative care services can also coordinate transition to adult services as the young person approaches adulthood.  
The Palliative Care team is made up of a multidisciplinary team of doctors, social workers, nurses, therapists, counsellors, play therapists and other professionals tailored to your child's needs.  Their role is to listen to you and provide guidance, help you understand what is happening at each step of the way and help you plan.   
It is a common misunderstanding that paediatric palliative care can only be provided at the end of life and when there is no hope of cure.  However paediatric palliative care can and often is provided alongside curative treatment such as surgery or other treatment.  The paediatric palliative care team will work alongside your child's treating team. 
Palliative care can be accessed through referral from your General Practitioner, medical specialist or other health provider. To find a service in your local area go to the National Palliative Care Service Directory

Get involved

Your experiences as a consumer or carer are the best evidence we will have to drive improvement in the quality of, and access to, paediatric palliative care throughout Australia.  The purpose of sharing your story is to assist families who may be having a similar paediatric palliative care experience understand that there are others who may also be going through the same journey.   To share your story please complete the contact us form  contact us page 
If you are a child, young person, family member or carer who has experienced or is experiencing paediatric palliative care, are a paediatric palliative care health professional, a service or a not for profit organisation with an interest in paediatric palliative care we want to hear from you.  The lived experience will provide us with an understanding and a perspective which when partnered with clinical and academic professionals will create a holistic approach to improving the provision of paediatric palliative care in the future   You can help in many ways as we deliver the three-year Paediatric Palliative Care Project.   Contributions could be participating in consultations, participate in surveys, review and develop resources.  For more information on how you can help visit Paediatric Palliative Care National Action Plan Project
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