Clinical trial preparation involves building up your support network.
Living with an illness or condition can sometimes be hard work, full of physical and emotional ups and downs. It can be so much easier when you have a solid network of people close to you who empathize, understand your condition, and who truly care about how you feel, on good days and bad.
Your network becomes doubly important when you join a clinical trial, as it has its own set of demands. The following are ways you can build and solidify your personal network — the people who can support and sustain you in your daily life and well beyond the clinical trial.
SUPPORT FROM LOVED ONES AND PEOPLE CLOSEST TO YOU
Significant other/life partner
PEOPLE IN YOUR EXTERNAL SUPPORT NETWORK WHO CARE FOR YOUR HEALTH AND WELL-BEING
Primary care physician
Physical therapist (e.g., massage therapist, physiotherapist, etc.)
Patient support groups and patient advocacy groups
Other members of the research team
PREPARING FOR YOUR CLINICAL TRIAL
Once you’ve decided on your network, honesty and communication are key to letting these people actually support you. Clinical trial patients have told us they sometimes held their feelings in because they thought they might be perceived as needy or a burden — but people can’t help you with something they don’t know about. Reach out and let them in. The process can be trying, but preparing for your clinical trial also takes strength and determination, and your family, friends, colleagues, and caregivers need to hear that from you.
The people closest to you are crucial to your support network. Often, they want to help, but just aren’t sure how. Help them help you by clearly explaining what you’re doing and why — that the trial’s a commitment you want to honor, and that it involves appointments, journal work, etc. Don’t be afraid to say it might temporarily change life at home, and that you’ll be counting on them for their support.
Things Your Support Network Can Do:
Help you evaluate benefits and risks of participating in a clinical trial
Learn About Patient Rights and Ethics and Informed Consent
Understand why to participate in a clinical trial
Join you in understanding the clinical trial journey