26 May 2023

Canberra children’s palliative care toolkit launches but it's not all 'full of sadness'

| Travis Radford
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Palliative care toolkit launch attendees.

Palliative Care ACT’s new toolkit, co-authored by university lecturer and paediatric nurse Macey Barratt (second from the left), was launched this week. Photo: Travis Radford.

A new palliative care handbook written especially for relatives and friends of families with children who have been diagnosed with a life-limiting illness has been launched in the ACT.

Toolkit co-author, university lecturer and paediatric nurse Macey Barratt said she wanted anyone to be able to pick up the handbook and understand the key concepts of palliative care.

“Palliative care is all about coming together to support a family in any way that they require it … and it’s a journey that is not going to always be somber or full of sadness,” she said.

“There is so much beauty in palliative care, there is so much joyfulness that palliative care can bring because … you’re recognising quality of life over quantity.

“You’re really trying to make lots of memories for that family because we can’t change the end of the journey but we can really bring light and joy into that journey.”

Children's palliative care toolkit.

The toolkit’s advice has been divided into the four stages of palliative care, with all chapters featuring children’s illustrations. Photo: Travis Radford.

Four of Ms Barratt’s nursing students from the University of Canberra and toolkit publisher Palliative Care ACT also helped with the creation of the 22-page booklet, which has been divided into four stages, ‘worst news ever’ (an introduction to palliative care), ‘surviving and thriving’ (palliative care when treatment is ongoing), ‘not long now’ (when end of life care begins) and ‘so much pain’ (after death care for the family).

The booklet also busts several common myths about children’s palliative care, including that palliative care is only for elderly people and that children are too young to understand palliative care.

“[Children] might not understand the term ‘palliative care’ but they understand that they are in hospital [and] they understand that they are undergoing treatment,” Ms Barratt said.

“You can have a 12-year-old that’s very aware of their own condition, who should be having these discussions with people so they can make the most of their life.”

The toolkit also includes memory-making activity ideas, information about local resources, cut-out “vouchers” to offer support with everyday tasks and space at the end for reflection by the reader.

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“We really talk about the fact that you require your own care and to acknowledge that this is a difficult journey for you as well as a difficult journey for the family of the child,” Ms Barratt said.

“One of the things we talk about in the toolkit is don’t be absent. Just be there for them. Keep talking about it and recognise that there’s going to be good and bad moments.”

Children’s drawings of things that make them happy are also included on almost every page to make the toolkit lighter reading and to recognise the value of children.

Minister for Health Rachel Stephen-Smith thanked everyone involved in creating the toolkit for drawing attention to what she said was an important but often unspoken subject.

“The level of stress that parents and carers and their families experience in caring for a child with a life-limiting illness is unimaginable,” she said at this week’s launch.

“With the right resources, knowledge and support we can help children and families who are facing serious illness to live their lives to the fullest with dignity and respect.

“This toolkit provides a wealth of fun ideas and resources for families and friends to support their loved ones caring for a child with a life-limiting illness.”

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The latest toolkit is the fifth in a series published by Palliative Care ACT over the past five national palliative care weeks, which happen in the last week of May each year.

Palliative Care ACT interim CEO Tracy Gillard acknowledged the latest toolkit on palliative care for children was especially confronting but said it was an important topic.

Other toolkits have canvassed topics including life-limiting illnesses in the workplace, cultural approaches to death and dying and LGBTQIA+ inclusive palliative care.

“The toolkits are guides, they’re not authorities. They’re intended to be discussion starters on topics that we think it’s important to talk about,” Ms Gillard said.

The toolkits, including the latest edition about palliative care for children, can all be accessed for free on Palliative Care ACT’s website.

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