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.
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 CHOiCESTM
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™. Helping young people to express their preferences is really important for allowing them to achieve good quality of life and to live their lives to the fullest.
What this study aims to achieve
We have recently developed an advance care planning tool specifically for Australian young people for when it is not certain that their cancer can be cured. Our team evaluated the American Voicing my CHOiCES™ tool with Australian young people, their families and healthcare professionals. The next step is to evaluate this new Australian version of the Voicing my CHOiCES™ tool. Having 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.
Together with our consumers and stakeholders, our team has adapted the language, content and structure of the tool to better suit Australian adolescents and young adults living with cancer. This has been an important step: not only to make the tool more relevant to our Australian healthcare system, but also to make the tool ‘speak’ in language that makes sense to Australian adolescents and young adults.
We’ve had help from the Australian Medical Association Queensland to update the tool’s look and graphic design to better suit Australian young people’s preferences and needs. The result is a tool with a more Australian flavour, and a look that our consumers felt was more inviting and engaging for them. Using tools like this can help us to help patients, families, and health-professionals alike navigate the murky waters of, “What next?”
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 CHOiCESTM
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™. Helping young people to express their preferences is really important for allowing them to achieve good quality of life and to live their lives to the fullest.
What this study aims to achieve
We have recently developed an advance care planning tool specifically for Australian young people for when it is not certain that their cancer can be cured. Our team evaluated the American Voicing my CHOiCES™ tool with Australian young people, their families and healthcare professionals. The next step is to evaluate this new Australian version of the Voicing my CHOiCES™ tool. Having 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.
Together with our consumers and stakeholders, our team has adapted the language, content and structure of the tool to better suit Australian adolescents and young adults living with cancer. This has been an important step: not only to make the tool more relevant to our Australian healthcare system, but also to make the tool ‘speak’ in language that makes sense to Australian adolescents and young adults.
We’ve had help from the Australian Medical Association Queensland to update the tool’s look and graphic design to better suit Australian young people’s preferences and needs. The result is a tool with a more Australian flavour, and a look that our consumers felt was more inviting and engaging for them. Using tools like this can help us to help patients, families, and health-professionals alike navigate the murky waters of, “What next?”
If you’d like to read more about this study you can check out Ursula’s blog post on Oncology News - https://oncologynews.com.au/talking-about-dying-is-never-easy/
You can also read more from the team on the communication needs of young people with cancer here - https://www.liebertpub.com/doi/full/10.1089/jayao.2019.0084
If you’d like to be involved or find out more about evaluating the new Australian Voicing my CHOiCES™, get in contact with our Chief Investigator Ursula via the details below, or leave us a message on the website (https://www.behaviouralsciencesunit.org/difficult-discussions.html)
Ursula Sansom-Daly
Email: ursula@unsw.edu.au
Phone: (+612) 9382 3114
You can also read more from the team on the communication needs of young people with cancer here - https://www.liebertpub.com/doi/full/10.1089/jayao.2019.0084
If you’d like to be involved or find out more about evaluating the new Australian Voicing my CHOiCES™, get in contact with our Chief Investigator Ursula via the details below, or leave us a message on the website (https://www.behaviouralsciencesunit.org/difficult-discussions.html)
Ursula Sansom-Daly
Email: ursula@unsw.edu.au
Phone: (+612) 9382 3114
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