Patients, and families of patients, impacted by advanced melanoma are invited to participate in an online interview to explore their views, experiences, and needs related to genetic information, support and testing.
Study Overview
This study aims to explore your views, experiences and needs related to genetic information, support, and testing. Your insights will assist health professionals and services provide information and support about genetics in a way that best suits the needs of people with an advanced, progressive illness.
This research is being led by Dr Stephanie White from the Graduate School of Health, University of Technology Sydney (UTS).
This study has received ethical approval from the Human Research Ethics Committee at the University of Technology Sydney (ETH24-9587).
Who Can Participate:
• People with an advanced, progressive disease receiving supportive care
• Spouses or blood relatives of someone with an advanced, progressive disease
• Bereaved spouses or blood relatives of someone who had an advanced, progressive disease
What to Expect
Format: The interview will be conducted online using Zoom or by telephone so you can participate from your home or another convenient place.
The questions we will ask are aimed at exploring your views, so there are no right or wrong answers. An example would be asking for your thoughts on the benefits and harms of discussing genetics or having genetic testing.
You are welcome to have a support person attend the interview with you if you wish.
Duration: The interview will last up to 60 minutes, depending on how much information you provide.
Remuneration: As a token of our appreciation, you will receive a $50 gift card for your time.
How to Participate
If you are interested in participating or would like more information, please email GCresearch@uts.edu.au.
Your participation will provide crucial insights and help shape future genetic support and testing services for those with an advanced, progressive disease. We understand these discussions can be sensitive, and we are committed to approaching these conversations with the utmost respect, care and privacy.
Thank you for considering this opportunity to share your valuable experiences.
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