If someone you care for is taking part in a clinical trial, you may need to support them during their participation. Caregivers can be a close family member, such as a spouse or sibling, a close friend, or a professional carer.
Watch the video to learn about the importance of caregivers in trials and what type of role they can play:
What will a caregiver do?
The level of support that you may be expected to provide will vary depending on the nature of the trial. For example, it might simply mean providing emotional support by checking regularly on how the person you care for is doing.
In some instances, you may need to help the person you care for get to and from their trial visits. In others, you might be asked to attend visits with them, and even complete questionnaires about how they’re doing. Your role may also include assisting with trial drug adherence and/or administering the trial drug.
Caregivers tend to be the person who spends the most time with the participant in their day-to-day life. This makes them uniquely placed to keep an eye on the health and behavior of the participant and spot any significant changes.
This can be invaluable to the trial team, and can help them make important decisions about the investigational drug.
Just like the participation of the person you care for, your support as a caregiver is equally important. With every appointment you drive to and every call to the doctor you make, not only are you helping ensure the person you care for gets the best care available, but you’re also contributing to the advancement of medicine – and the greater good – for all.
What else do I need to know?
Informed consent
Before the person you care for takes part in a trial, a detailed description of the trial, as well as possible risks and benefits, are provided in writing in an Informed Consent Form (ICF) and discussed with you both. You and/or the person you care for will be asked to review and sign this form prior to taking part. But before you sign the ICF, you should make sure you have all the information on the following important topics:
Time commitment
In addition to knowing how long the trial will last, specific details about participation are important as well. What days and times are appointments available? How long will each appointment last?
Cost and compensation
In most cases, the investigational drug or placebo, as well as trial-related medical exams, procedures, laboratory tests, and travel, are all covered by the trial sponsor. Be sure to find out if reimbursement options are available.
Travel
Is there a trial site nearby? How far and how often will you and the person you care for need to travel to appointments? These are important considerations, as you will likely have more frequent appointments than for regular doctor visits. Some people are happy to travel a long way for the right trial; others prefer to stay more local.
Questions from the person you care for
As a study partner, you may be an advocate for the person you care for. Use the informed consent process as an opportunity to understand their concerns and speak up with any questions they or you may have.
Languages
Trial-related materials are sometimes available in more than one language (to accommodate which language the participant/family/caregiver are most comfortable speaking). Many trials have team members who can act as interpreters, too, so be sure to ask the trial team about this, if it is relevant to you.
Practical considerations
Some things, like not having a trial clinic nearby or access to childcare, may make it harder to join. Other things, like being unsure of the medical system, can make people hesitant to join. The good news is that you and the person you care for are not alone. Many clinical trials and the clinics conducting them have built-in options for support, which may make participating a little more accessible.
Safety
As a trial partner, you should know that the person you care for has the right to withdraw from the trial at any time for any reason without impact to their future medical care. Please also keep in mind that the trial doctor or sponsor has the right to withdraw any participant at any time. For instance, the person you care for may be withdrawn in the interest of their safety. If you have more questions regarding this, please speak to the trial doctor or team.
Where next?
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More information
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Download our Caregiver brochure.