Paediatric Palliative Care for Families and Carers

A dedicated paediatric palliative care website is coming soon.

The Paediatric Palliative care website is being developed in collaboration with Palliative Care Australia (PCA) and Paediatric Palliative Care Australia and New Zealand (PaPCANZ) , and co-designed with families/carer, health professionals and support organisations.

The website will be a one-stop shop for quality paediatric palliative care specialised information and resources for families/carers, health professionals and young people experiencing paediatric palliative care.

Paediatric palliative care enables the infant, child or young person to live in an environment where curative treatment can be part of their life, but not be their entire focus. It aims to provide the best quality of life through a holistic approach which supports the physical, emotional, social and spiritual aspects of the child and their family.

This page provides practical information about paediatric palliative care for families who have a child with a life-limiting illness, as well as the people who support them.

The main topics include:

Diagnosis/Recognition

There are different ways a family might receive a diagnosis or recognition of a life-limiting illness. Ideally, every family is informed of their child’s prognosis in a sensitive, respectful and honest manner. Regardless of how the diagnosis is initially raised, it is important to remember that all children should have access to high quality medical assessment and care.

Ongoing/Palliative Care

An assessment to determine the needs of both the child and their family should be undertaken shortly after diagnosis or recognition and should be reviewed as their needs change. This assessment is a time to explore the child and their family’s goals, hopes, concerns and should include input from a multi-disciplinary team (i.e., a team made up of different health professionals). The primary goal of this assessment is to provide the best possible arrangement for the child and the family.

End of Life

Planning for the end of life can help ease stress by assisting carers to know what to expect and what support is available. It can also help avoid making difficult decisions at a time of crisis. Where appropriate, the child should be involved in discussions about what they would like to happen if their condition worsens. When people are uncertain about how to best approach these decisions, a member of their care team will be able to help.

Bereavement

No one can anticipate how a person will feel or react after the death of a child and the death can affect parents, siblings and other family members in different ways. Whilst painful, grief is a normal process that can include a number of reactions and changes in emotions, behaviours, spirituality and the physical body. People may feel overwhelmed and may initially struggle to believe the child has died. Grief is not a mental illness even if people experience a range of different feelings and emotions.

If you need immediate emergency services help dial 000.

For non-emergency advice about palliative care, please ring your GP, palliative care service or nearest hospital. For information about palliative care services, see PCA’s National Palliative Care Service Directory.

To contact your Member Organisation go here.

If you’re feeling overwhelmed or having difficulty coping, ring Lifeline on 13 11 14.

 

Read more on the Paediatric Palliative Care National Action Plan Project

Further resources for Families and Carers are available for download below.

Further information

Please contact Toni Rice, Paediatric Palliative Care Project Coordinator or Annette Vickery, Paediatric Palliative Care Senior Project Officer on paediatrics@palliativecare.org.au.