Caring for someone considering a clinical trial

You may be reading this information because you are caring for someone with cancer who is interested in taking part in a clinical trial or another research study. It is often a good idea for carers to read about the study themselves and talk it over with the person who has cancer. You can also discuss the study with the clinical trials or research nurse.

While the decision to join a study can only be made by the person with cancer (unless they’re under 18), it’s important to understand what impact the study might have on them, and on you and your family. For example, you may have to take extra time off work to drive the person to appointments, or you may be worried about how the treatment will affect them. If the study will mean you have extra expenses (such as parking fees), check whether you can be paid back for these.

Being involved in research may offer the person with cancer a chance to have a promising new or improved treatment or useful supportive care options. It may be satisfying to know that their participation will help others in the future. As a carer, you may also be asked to take part in research into the experience of carers, for example, by doing surveys about your wellbeing. You could read our information on cancer trials and research to help you decide.

Caring for someone with cancer can be stressful. Try to give yourself some time out, and share your worries and concerns with somebody neutral such as a counsellor or your doctor. To find local support services and information, contact the Carer Gateway (call 1800 422 737) or call Cancer Connect on 13 11 20.