Watch The Abstract
Abstract Description
Institution: Palliative Care Australia - Queensland, Australia
Background
As part of the Supporting Children with Life Threatening Medical Conditions and their Families 2019 federal election commitment, Palliative Care Australia were funded to undertake stakeholder engagement to inform the Paediatric Palliative Care National Action Plan (‘The National Action Plan’).
Aim
To articulate steps that will build capacity of the Australian health care system to respond to the needs of the paediatric palliative care sector, working with consumers, clinicians, and key organisations which support paediatric palliative care patients and families with all levels of need.
Methods
This project received ethical approval through Bellberry Ltd. Consumer and professional stakeholders were recruited through advertising by Palliative Care Australia across primary, tertiary, and community healthcare. Virtual consultations were undertaken with stakeholders in individual or group settings, aligned to their preference.
This qualitative study investigated perceptions of need in Australia’s paediatric palliative care sector under the areas of quality, access, information sharing and collaboration, and data and research. Utilising a mini-delphi method across two rounds of stakeholder engagement, iterative understandings of areas of need and solutions in the Australian context was reached. Additional to these findings, consumer feedback was sought regarding their experience of engagement in the development of the Plan.
Results
103 interactions with stakeholders took place across interviews, workshops, and consultations. Thematic analysis of workshop notes identified themes regarding suitability of language; adolescent and young adult considerations, including transition to adult services; bereavement support; sibling perspectives; service resourcing; cultural suitability; remote considerations; referral processes; and advance care planning. Stakeholder responses regarding the process of developing the National Action Plan are presented.
Presenters
Authors
Authors
Melanie Rolfe - Palliative Care Australia/ Aspex Consulting , Dr Peter Nagel - Aspex Consulting , Larissa Freeman - Aspex Consulting , Annette Vickery - Palliative Care Australia , Tara Conde - Palliative Care Australia , Lyn Peek - Palliative Care Australia , Sharon Lloyd - Aspex Consulting , Toni Rice - Palliative Care Australia
