Mrs Sara Fleming1
1Flinders University, Bedford Park, Australia, 2Palliative Care Australia, Australia
Biography:
Sara is a Nurse Practitioner with 25+ years of experience working in Paediatric Palliative Care. She is a senior lecturer in the Palliative Care team at Flinders University and fuses her clinical experience, love of teaching, and passion for the sector to this work. Sara worked on the Paediatric Action Plan Project with Palliative Care Australia where she developed resources including clinical guidelines and communication modules advancing commitment to co-creation with consumers. Sara has professional interests in sustainable practice, participatory design, communication, spirituality, and culture. She can be found happiest dancing in the kitchen with her little girls!
Abstract:
Background:
In 2023, optimising best practice in Paediatric Palliative care was supported by the Australian Government with the commissioning of Palliative Care Australia and Paediatric Palliative Care Australia & New Zealand to develop and implement Clinical Guidelines.
This presentation describes the impact of co-design with consumers in this development.
Aims:
To improve quality of life for children with palliative care needs, and their families by developing and implementing best practice guidance for clinicians.
Methods:
A scoping review identified three New Zealand Paediatric Palliative Care Clinical Network Clinical Guidelines for adaptation in Australia- Management of Agitation, Breathlessness, and Sharing significant news about end of life in paediatrics. This process embedded consumer co-design with clinician expertise and academic rigor in an equal three-pronged approach. The participation of consumers alongside clinicians was active in design, reporting, development and review levels through focus groups, consensus working groups and review processes. The methodological rigour and transparency in development was guided by the ADAPTE systematic approach and AGREEII (Appraisal of Guidelines for Research & Evaluation) international clinical guideline frameworks.
Results:
Through the consultation workshops with consumers to participatory design with parents in the clinical guidelines writing group and review feedback this project achieved;
–Powerful family-centered voices into what advice is given to clinicians about practice.
–Transformation of how the guidelines look and feel, including the priority placement of these statements in the guideline themselves- which now lead with voice of the families.
Conclusion:
This project marks a meaningful step forward in embedding lived experience into clinical practice. By partnering with consumers as equal contributors, we reshaped both the content and structure of paediatric palliative care guidelines to reflect what matters most to families. Validating consumer voice is not just valuable—it is essential. This co-design approach offers a replicable model for future clinical guideline development.