I am a Family member or a Carer

The words paediatric palliative care are words that no person thinks they will ever hear and when we think of palliative care, we typically associate it with older adults, but the reality is that infants, children, and young people are also affected by life-limiting illness.

But what families and carers need to know is that paediatric palliative care is more than you think. It is about improving the quality-of-life of infants, children and young people with a life limiting condition and those that care for them.

Our role in supporting you

Paediatric palliative care supports each infant, child, young person and those that care for them in all aspects of care including physical, emotional, social, financial, cultural, and religious needs. Health professionals believe that the role of the family/carer in this care is essential as you known your child the best. Each family is unique, and everyone’s paediatric palliative care journey will be different.

These pages will provide you with information and resources that can be helpful at different times in your paediatric palliative care journey.

How to 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.

Your lived experience will provide us with an understanding and a perspective to the Paediatric Palliative Care Project which, when partnered with clinical and academic professionals, will create a holistic approach to improving the provision of paediatric palliative care in the future.

To register your interest in contributing to the Paediatric Palliative Care Project, please complete a brief expression of interest survey.