Seeking caregivers of children with lived experience of high-risk neuroblastoma

About the Project and the Involvement Opportunity

This research aims to better understand how neuroblastoma cancer cells change and adapt during treatment. The team will also explore new RNA-based approaches that could help improve treatments in the future.

Parents or caregivers of children with lived experience of high-risk neuroblastoma are invited to provide input on the research from a family and patient perspective. Their experiences and feedback will help researchers better understand the priorities and challenges faced by families and ensure that future research directions address issues that are meaningful to the neuroblastoma community. Consumer involvement will help strengthen the relevance and impact of the research and support the translation of laboratory discoveries into future treatments.

About the Position

Parents or caregivers will work alongside the research team to provide lived experience perspectives and feedback throughout the project. Their input will help ensure that the research reflects the priorities, needs and experiences of families affected by high-risk neuroblastoma and supports the development of meaningful research outcomes.

What Am I Expected to Do?

Attend regular meetings with the research team (e.g., monthly or quarterly)
Review documents (e.g., grant applications, consent forms, surveys)
Share your lived experience and insights

What Skills or Experience Do I Need?

You should be a parent or caregiver of a child with lived experience of high-risk neuroblastoma. No previous research experience is needed.

We are looking for people who are willing to share their experiences and perspectives, take part in discussions, and provide feedback to help guide the research. Your lived experience and insights are valuable and will help ensure the research reflects the needs and priorities of children and families affected by neuroblastoma.

How Long Am I Expected to Be Involved?

Consumer involvement will take place throughout the project as needed. Participants will be invited to provide feedback on different parts of the research, such as study information, research priorities, and how research findings are shared with families and the broader community.

Participation is flexible, and you can contribute in the way that works best for you, including online meetings, in-person meetings, or by email. We expect there will be approximately two to four meetings each year, lasting around 30 to 60 minutes each, with occasional emails between meetings. Your level of involvement can vary depending on your availability and interests.

Where Will Meetings Be Held?

A mix of in-person and online, depending on consumer preference

What Support Is Offered?

An honorarium of $50.00 per hour is available for consumer involvement activities in line with CCIProgram guidelines
Training and support provided by the CCIProgram or relevant support body.

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