People who are living with a serious illness know how to discuss difficult topics with family and friends. May have additional questions to ask if they are interested in taking part in clinical trials.
Although most friends and family will support you, preparing talking points and anticipating questions can facilitate productive discussions about volunteerism for research studies. Here are some tips.
Discussing clinical trials with your loved ones: Tips
Select the right moment. The first step is to choose the right place and time for the conversation. The right tone can be set at a time when everyone is available and willing to chat.
Understand the audience. Even though the information shared will be the same in the discussion, tailoring the messages can help everyone understand what participation means. Does not have the same level of health literacy for all audiences.
Share your reasons for joining. Share the reasons why you are interested in participating in clinical trials. This will help your loved ones to understand. Benefits include taking an active part in the treatment process, accessing potential new therapies, and accelerating medical research. Volunteers also have personal connections.
Be honest about the potential risks. Clinical trials evaluate treatments that are not yet approved. It’s, therefore, understandable that loved ones may have legitimate concerns. The most common problems are side effects or treatments that don’t work as expected. However, participants can withdraw from a clinical trial at any point for any reason.
Be prepared to answer common questions. Some of the most common questions include:
What is a Clinical Trial?
How can we tell if the system is working?
Does your doctor still care for you?
Do you expect more doctor’s appointments?
What is the cost of this?
What happens if I get a placebo instead?
Even for those who don’t have cancer, the Cancer Support Community published a great e-book called Frankly Speaking About Cancer Trials that answers these questions. Other online resources can also provide context on why clinical trials are beneficial and the importance of volunteering for them.
It may seem daunting to discuss research with family members, but this can be an effective way to include them in your decision-making. Preparing for the discussion will make it easier and allow loved ones to understand why enrolling in research is beneficial.
