UQ Study Invitation: How do carers and families experience conversations about the end of life?

March 26 2018

If you live in Brisbane or Ipswich and have lost a loved one due to a non-cancer illness such as lung failure, heart failure, brain or nerve conditions (motor neurone disease, Alzheimer’s disease, dementia), or kidney disease between 3 and 12 months ago, we would like to invite you to share your experiences and views about how end of life issues were discussed and managed with your loved one. We understand that losing a loved one is often intensely emotional and personal, so we are prepared to discuss these sensitive topics with the understanding and respect they deserve.

Your participation will consist of either an interview where you are alone with an interviewer, or a group session where about other 5 family members will be sharing their experiences with a moderator. These will be held between March and June 2018. You can choose which of the two options you prefer. Interviews take around 1 hour and group sessions (focus group) take roughly 2 hours. Your participation is voluntary and all responses are kept anonymous, that means that no one will be able to identify you. You are free to withdraw from the study without any consequences.

This study may not directly benefit you, however it will provide you with the opportunity to discuss experiences with the treatment of your loved one that you were perhaps unable or unwilling to discuss at the time they were receiving medical care. In addition, the findings of this study will contribute to the development of targeted approaches to support physicians and medical students in the process of discussing death and dying in illnesses with an uncertain progression. This should potentially improve the care given to families and patients at the end of life.

To register your interest of if you would like more information, please contact Dr Laura Deckx via email at eolcstudy@uq.edu.au

We thank the unconditional support of Lung Foundation Australia for allowing us to contact you via their Facebook page. This study is not affiliated with nor funded by the Lung Foundation Australia, please send all enquiries to eolcstudy@uq.edu.au. It has been reviewed and approved by the University of Queensland Human Research Ethics Committee (approval no. 2017001435).