Palliative Care Australia (PCA) and Paediatric Palliative Care Australia & New Zealand (PaPCANZ) have received funding from the Australian Government under the National Palliative Care Projects for a new project – Shaping the Future of Paediatric Palliative Care.
The Project will encompass a comprehensive approach to awareness-raising, advocacy, and inclusive involvement of those affected by life-limiting illnesses and those from underserved populations in the planning, and evaluation of activities.
Together with PaPCANZ we are taking the Paediatric Palliative Care National Action Plan to new heights!
The National Action Plan (NAP) has been our guiding star, charting a course for a brighter future in paediatric palliative care.
The Shaping the Future Project is focusing on the national quality and access elements of the NAP with four key actions:
What’s also included in our Plan?
Maintaining the Paediatric Palliative Care website to ensure children and young people with life limiting illnesses, their families and the medical and support staff who care for them have a ‘go to’ place for trusted resources, information and research. Additionally, it includes the adaptation of resources to cater to the specific needs of diverse communities, ensuring equitable access to vital information.
To achieve our objectives, it is vital to work alongside parents, carers, young people and their families and codesign all activities.
The consumer voice highlights the uniqueness of paedatric palliative care and the significant role that families play in this important area of health care. We can look at the action plan through a lens that can’t be understood from a textbook or from professional experience; We provide practical insight from the rollercoaster that is loving a child with a life-limiting condition, through every stage of the journey (Consumer Forward The-Paediatric-Palliative-Care-National-Action-Plan.pdf (paediatricpalliativecare.org.au)
It is also imperative to foster the partnership between paediatric palliative care specialist teams, , allied health professionals, primary health and community providers, researchers, and various specialists including oncologists, neurologists, geneticists and endocrinologists.
The project approach is robust, involving extensive research, genuine co-design, fostering collaboration and active listening.
To drive innovation and ensure the project’s success we will trial and evaluate new tools, share stories and knowledge through surveys and working groups.
A Steering Committee has been established is to provide the guidance, oversight, and expertise needed to steer the project in the right direction.
To learn more about the members visit our Steering Committee page
We are establishing a diverse stakeholder engagement group to participate in activities throughout the Project. You are invited to complete this survey to register your expression of interest for opportunities to participate.
PCA values parents, carers, and young people as partners in research projects we believe co-designing activities is not just a best practice; it is essential for ensuring that the initiatives are reflective of the real experiences, needs, and aspirations of the people affected. This approach enhances the quality, relevance, and impact of your research and the resulting activities.
We are submitting an ethics application for consumer-focused activities to ensure that our actions and decisions align with ethical principles.
We are doing this to safeguarding the rights and well-being of the individuals so generously willing to share their experiences to improve Paediatric Palliative Care for other children, young people and their families.
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