Beyond Brain Cancer

What is this study about?

Adolescents and young adults diagnosed with brain cancer face many challenges once treatment has finished. There can be changes in friendships, independence, health, worries (e.g. the cancer returning or getting worse), and their mood.

All of these changes are difficult to cope with, especially while trying to get back into normal life.

Despite this, there are few support programs designed specifically for adolescents and young adults with brain cancer that teach useful coping strategies to manage these challenges, and are available in Australia.

What are we doing?

Through interviews we will hear what life is like after brain cancer treatment has finished. This includes, asking about challenges and changes experienced, and what it has been like trying to get the psychological support that is wanted or needed.

We will also be gaining feedback on an existing online group-based program for adolescents and young adults who have survived any cancer – Recapture Life – to create a brain cancer specific version.

The content and format of this group will be tailored with feedback from adolescents and young adults who have experienced brain cancer, caregivers and health professionals.

Later on, we plan to test the newly developed program in a pilot study to ensure that it is relevant and useful for adolescents and young adults who have experienced brain cancer.

What do we expect to find?

The opinions shared by adolescents and young adults, caregivers, and health professionals will give us a deeper understanding of the impact of ‘surviving’ a brain cancer on adolescents and young adults, and how to adjust coping skills to meet these needs.

Additionally, a brain cancer specific group-based program that teaches adolescents and young adults these coping skills to improve psychological wellbeing will be developed.

We expect that this program will be seen as relevant and helpful by adolescents and young adults who have experienced brain cancer and will fill a support gap in what is currently available for them.

What are our next steps?

We are looking for 15–40-year-olds who have had a diagnosis of brain cancer and have completed curative treatment (that is, treatment which has been successful in controlling, removing, or treating the brain tumour/cancer), as well as the carers and the health professionals that support them to share their opinions in an interview.

For more information or to get involved visit the Beyond Brain Cancer website
or contact the team at recapturelife@unsw.edu.au

For more information or to get involved visit the Beyond Brain Cancer website
or contact the team at recapturelife@unsw.edu.au