We are establishing a diverse group of consumers to participate in activities for the "Shaping the Future of Paediatric Palliative Care Project". To learn more about the Project please visit https://paediatricpalliativecare.org.au/shaping-the-future-of-paediatric-palliative-care-project

We invite consumers (parents, carers, young people and families) who have experience of Paediatric Palliative Care who would like to be involved in this project to complete the survey below and let us know which activities you are interested in.

Snapforms survey platform is located in Australia, ensuring that all data is stored within the country.

This survey will take up to 20 minutes to complete. If you need assistance with completing this survey, please contact the project team on (02) 62320700 or paediatrics@palliativecare.org.au.

Participation in this survey is voluntary. If you decide to take part and later change your mind, you are free to withdraw from the project at any stage.

Privacy and Data Handling:

• Personal information collected will only be used for the purpose of participation in the project and will be handled according to Palliative Care Australia (PCA) Privacy Policy - Privacy Policy - Palliative Care Australia

Project Overview:

• Palliative Care Australia (PCA) and Paediatric Palliative Care Australia & New Zealand (PaPCANZ) have received funding from the Australian Government for a new project called "Shaping the Future of Paediatric Palliative Care."

• We value the input of parents, carers, young people, and family members, in our research project, believing that involving consumers in designing activities is essential to ensure that the activities reflect real experiences and needs.

Project Goals:

• The project aims to improve paediatric palliative care services, including workforce development, accessibility, awareness-raising, advocacy, and inclusive involvement of those affected by life-limiting illnesses.

• Focus areas include increasing workforce skills, developing clinical guidelines, improving referral strategies, and creating a Transition Pathway for young people and families transitioning between paediatric and adult palliative care services

Activities include:

• Developing resources for the Paediatric Palliative Care website

• Making paediatric palliative care resources more accessible for people from underrepresented groups.

• Developing strategies to improve referrals to paediatric palliative care

• Developing a Transition Pathway (A plan or process that assists individuals from one setting to another) for young people transitioning to adult health services

Ways to be Involved:

Consumers can contribute in various ways, such as participating in workshops, working groups, interviews, sharing their stories through written, video, or podcast formats, providing thoughts through surveys, giving feedback on resources, and reviewing project documents. The amount of time people spend participating in this research project varies – workshops are 1.5 hours, working groups are 1 hour each, sharing your story is 1 hour, reviewing resources is 1 hour. Participants will be remunerated for their participation in the research project activities.

Accessibility:

If you need any support in completing this survey, please let us know

Ethics:

The project team have developed all project activities to ensure the safety and wellbeing of consumers is maintained. Bellberry Human Research Ethics Committee has approved the "Shaping the Future of Paediatric Palliative Care Project" - https://bellberry.com.au/

If you would like to speak with the project team prior to completing the survey or instead of completing the survey, please email them at paediatrics@palliativecare.org.au

Please be aware that this research project is designed for individuals aged 12 years and above.

Thank you for your interest, please contact us on paediatrics@palliativecare.org.au if you would like additional information.

Providing your email address will allow us to keep you informed of the project activities. You can withdraw your interest at any time by emailing us paediatrics@palliativecare.org.au

Given the sensitive nature of this project, we recognize that individuals who have experienced a recent loss may face an increased potential for emotional challenges and distress. We want to ensure that participation aligns with your comfort and readiness to share your experiences. We respect the diversity of individual circumstances, and if you feel that the timing or assessment may not accurately reflect your situation, please share your thoughts in the space provided below. We are open to organizing a meeting to discuss your specific needs and considerations. Your well-being and comfort are our priorities throughout this process.

In the questions below you can choose which activities you would like to be involved with and how you would like to be involved. If you are not interested in an activity, you can just move to the next question. You can always change your mind at a later stage.

Thank you for your interest. If you have any questions, please contact us on paediatrics@palliativecare.org.au