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Children’s Palliative Care Toolkit made with compassion and creativity by UC nursing staff and students

Emma Larouche

26 May 2023: Nursing staff and students at the University of Canberra, with Palliative Care ACT, have released a Children’s Palliative Care Toolkit for the Canberra community.

Launched during National Palliative Care Week, the toolkit provides practical guidance and knowledge for those close to a family who are caring for a child with a life-limiting illness.

This is the third year the University’s nursing discipline has been involved in developing a toolkit for Palliative Care ACT.

Nursing Lecturer Macey Barratt drew from her clinical experience in paediatrics to lead the University’s contribution to a cause that is close to her heart.

“I've had the privilege to care for children and their families through the palliative care process and there are always those surrounding the family with lots of love and support, but don’t know what to say or how to say it or what they can do, because the topic isn't discussed as much as it could be,” Ms Barratt said.

“This toolkit can start a conversation about a sensitive topic.”

Palliative Care ACT CEO Tracy Gillard said that while many Canberrans access clinical paediatric services in Sydney, it was important to inform the Canberra community about how they can help families going through the process of palliative care for infants, young children or adolescents.

“When it's a child, it can be so much more distressing and unexpected, which can make people hesitant to reach out because they don't want to say the wrong thing or feel like they’re inconveniencing the family,” Ms Gillard said.

“It was important to make this toolkit accessible, in easy-to-understand language.”

Supporting the simple communication style are children’s drawings, scattered throughout the book – an idea which came from nursing staff and students, whose own children contributed their artwork to the project. This included the work of four-year-old Matilda Chesterfield, daughter of second-year nursing student Charissa Wright.

“We thought these drawings could bring a bit of lightness to the topic as people navigate the pages,” Ms Barratt said.

“We’ve also included a list of fun activities for the children and opportunities for self-reflection.”

Ms Barret said it was the second- and third-year students involved in the project who offered insight into the layout of the toolkit and suggestions for the creative elements.

Third-year nursing student Emma Rubendra said the process was an invaluable experience and an area of palliative care she had previously known very little about.

“While it is a heartbreaking and depressing subject, we wanted to make sure there were ways to make things more joyful for children and their families, so they’re not just thinking about the end of their time here, but are making the most of the time they have left,” Ms Rubendra said.

The toolkit can be accessed here.