The Lived Experiences of Young Australians with Li-Fraumeni Syndrome: are their psychosocial needs being met?

This study aims to understand how young people experience Li-Fraumeni Syndrome (LFS) on a day-to-day basis, and what their age-specific support needs are. We aim to make recommendations for the development of psychosocial model of support specifically for young people with or at risk of LFS.

What is this study about?

Li-Fraumeni Syndrome (LFS) is a hereditary cancer syndrome caused by a change in the gene called TP53. People who have this gene change have an increased risk of developing several different types of cancer from a young age into adulthood.

We know that adolescence and young adulthood is a time of constant change, emotionally, physically and socially. We also know that LFS is a unique and potentially concerning condition to live with. So in this study, we want to know what it's like to be young and live with LFS, and also what young people’s specific support needs are.

We are currently recruiting 30 young people (aged 15-29) who have either had genetic testing and know they have the TP53 gene change, or who haven’t had genetic testing yet but knows that one of their parents has this gene change.

What does participating in the study involve?

Participating in this research study means taking part in an interview with a researcher. In this interview you will talk about living with LFS in all aspects of your life. It is expected to take 60-90 minutes and can be at a location of your choosing. Your identity will remain confidential, and any publications or presentations of the research will be modified so that you are not identifiable.

Although unlikely, you may find the interview distressing. It is important to know that you can stop or pause the interview at any time, or withdraw from the study at any time after consenting to participate. If you become distressed, support options within the Peter MacCallum Familial Cancer Centre or the ONTrac at Peter Mac Youth Cancer Services will be made available to you free of charge.

Are you under 18?

If you are under 18 years of age and want to participate in this research, it’s important to keep your parents/guardians in the loop.

We still need your consent if you are a young person under 18 years of age, but we also need your parent's/guardian's consent. Showing them this website and talking about it openly will help. You or your parent/guardian can also contact the lead researcher with the details below to ask any more questions.

Next steps

If you are interested in participating or have any further questions please contact Rowan with the details listed at the bottom of this page. 

If you have been contacted previously please use the contact details to register your interest or withdrawal from the recruitment process.

Once you have registered your interest, Rowan will contact you to explain the study in more detail and what participating in this research entails. At this time you will organise a time and place to conduct the interview. If you withdraw, you will not be contacted again.

Sponsor

Peter MacCallum Cancer Centre

FUNDING

Melbourne Research Scholarship

PRINCIPAL INVESTIGATOR/S

  • Rowan Forbes Shepherd
Postdoctoral Fellow; Group leader: Psychosocial Cancer Genetics Research Group

CONTACT DETAILS

Rowan Forbes Shepherd
Email: [email protected]
Phone: (03) 8559 6194

Dr Laura Forrest
Email: [email protected]