Charity produces toolkit to support children and families through palliative care

Palliative care (the care given to those who are at the end of their lives) is a sensitive subject, and one many people hope to never need to think of. 

 

The sad reality, however, is that palliative care is a much needed service for many, and with around 9,535 children each year needing palliative care, the early childhood education and care (ECEC) sector may, at some point in their professional lives, work with a family who experiences palliative care for their child. 

 

In the Australian Capital Territory, around 20 children a year need palliative care, and that number, sadly, is likely to increase as the population of the ACT grows. 

 

To support these children and their families, Palliative Care ACT, with the support of nursing staff and students at the University of Canberra (UC), have created a toolkit about children’s palliative care, the fifth edition of which was released late last month in line with National Palliative Care Week.

 

UC 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.”

 

Designed for friends and family of a child who is accessing palliative care, the toolkit aims to start conversations, rather than to give all the answers. 

 

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.”

 

The toolkit addresses some common misconceptions about palliative care, and offers advice, divided into four stages, namely: 

 

• Introducing palliative care
• Palliative care when active treatment is still happening 
• When end of life care begins 
• After death care for the family. 

 

The toolkit also links ACT families in with local resources and supports. Making meaningful memories through excursions and outings, celebrating milestones and making time for simple activities is also covered in the guide, which includes a space to write reflections. 

 

“When people are in emotional times, it’s important to reflect on how they’re feeling, not to shy away from that, but also to embrace it and talk about those feelings,” said Tracy Gillard, interim CEO of Palliative Care ACT. 

 

ACT Health Minister Rachel Stephen-Smith launched the toolkit, which she considers a valuable resource for the local region.

 

“The level of stress that parents, carers, and their families experience in caring for a child with a life-limiting illness is unimaginable for the rest of us,” she said. “But 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, finding as many moments of joy as possible.”

 

Third-year UC 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.

 

Digital copies of the toolkit are available here. For a hardcopy, call (02) 6255 5771. Picture features contributors from the University of Canberra.