Exploring patient and family perspectives of genetic counselling and testing in the context of life-limiting illness

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, including those with dementia. 

Researchers are seeking participants to take part in an interview. Details of the interview are as follows;

• Interview can be conducted either online using Zoom or by telephone
• the interview will last for up to 60 minutes, depending on how much information you provide.
• Questions asked during the interview 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.
• As a token of our appreciation, you will be offered a $50 gift card for your time. 

If you meet one of the following criteria, you may be eligible to participate:

• People with an advanced, progressive disease (including dementia) receiving supportive care and who have capacity to consent to participation in research. 
• Spouses or blood relatives of someone with an advanced, progressive disease (including dementia)
• Bereaved spouses or blood relatives of someone who had an advanced, progressive disease (including dementia)