Current Recruiting

Difficult Discussions: Helping young people with cancer voice their choices

What is this project about?

For adolescents and young adults, going through cancer treatment can be really tough. Sometimes it’s unclear how things are going to turn out. There may be difficult conversations that young people want to have with family, friends and their healthcare team that they might not have the words for.

This study aims to evaluate the Voicing my CHOiCES™ advance care planning tool with adolescent and young adult cancer patients and survivors, and their families.

When there is so much uncertainty related to the future, being able to put words to their concerns can help young people feel more in control and have more of a say in their care and treatment.

Voicing my CHOiCES™ is an advance care planning tool for young people, developed by a team in the United States to give young people a way to express the things that are important to them – their thoughts about how they want to be comforted, supported, treated, and remembered.

Advance care planning is a series of steps that a patient, their family and healthcare professionals can take to make sure that the patient’s values, choices and decisions can be communicated in the future, if they were no longer able to do so themselves. For adolescents and young adults these steps are often recorded in a booklet, such as Voicing my CHOiCES™

Currently, there is no advance care planning tool specifically for Australian young people. Our team needs assistance evaluating the American Voicing my CHOiCES™ tool and adapting it for Australian young people with cancer. Creating an Australian advanced care planning tool will ensure young people’s voices are heard if their treatment does not go to plan, or takes an unexpected turn.

The use of age-appropriate advance care planning tools directly responds to adolescents and young adults’ needs. Young people report wanting to be involved in their medical decisions, and wanting to be told honest information about their illness if it is progressing or life threatening.

You are eligible to participate in this project if you are a  young person aged 15-25 who currently has cancer, or a cancer survivor who was treated between the ages of 15-25 years.

 

If you decide to participate, we will invite you to Sydney Children’s Hospital in Randwick to complete a brief questionnaire and have a face-to-face chat with a researcher asking your feedback on the Voicing my CHOiCES tool.

If you are interested, but don’t live in Sydney or aren’t able to travel to Sydney Children’s Hospital, you can still participate via phone.

Participating should take about an hour all up. You will be given a $30 Westfield or iTunes gift voucher to thank you for your time!

If you like to sign up to participate in this study:

Contact Holly Evans on 9382 3117 or holly.evans@unsw.edu.au

Contact the Canteen Research team on 1800 234 007 or researchteam@canteen.org.au

Visit The Difficult Discussions study website

This study has been approved by the Human Research Ethics Committee of the South Eastern Sydney Local Health District.  To contact them, call 9382 3587 or email rsoseslhd@sesiahs.nsw.gov.au and quote ref no.: 15/198

 

 

If you have any questions about this research, contact Holly Evans on (02) 9382 3117 or holly.evans@unsw.edu.au