The all-important support network

Living with an illness or condition can sometimes be hard work, full of physical and emotional ups and downs. It is so much easier when you have a solid network of people close to you who empathise, 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. We are sharing here some of the valuable insights we have learned from trial patients, and the 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.

You have the power to build your support team, with the people you know you can rely on during your clinical trial. All kinds of support can come from people like the ones below:

Loved ones and other people closest to you

  • Significant other/life partner
  • Children
  • Parents
  • Other relatives
  • Friends
  • Co-workers

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.)
  • Trainer
  • Psychotherapist
  • Spiritual advisor
  • Patient support groups and patient advocacy groups

When participating in a clinical trial

  • Trial doctor
  • Other members of the research team
Once you have 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 cannot help you with something they do not know about. Reach out and let them in. Yes, the process can be trying, but it 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 are just not sure how. Help them to help you by clearly explaining what you are doing and why — that the trial's a commitment you want to honour and that it involves appointments, journal work, etc. Don't be afraid to say it might temporarily change life at home and that you will be counting on them for their support.

Things they can do:

  • They can learn about your clinical trial: Reading this website or other sources for general information and going through the Informed consent process with you will leave them much better prepared to help.
  • They can be good listeners: Tell your loved ones that a sympathetic ear is sometimes all you need to feel better. Have frank conversations about the trial process — physically and emotionally. Tell them about your hopes or worries. Above all, keep communicating — silence can lead to assumptions or tension. What is obvious to you may not be obvious to your loved ones.
  • They can be proactive: Diseases can be unpredictable — so can your clinical trial journey. Ask your family to be adaptable and follow your lead, so you can all handle twists and turns together. As a family, shuffle daily chores, meal planning, etc. around so everyone contributes to the game plan before the trial starts, and you are relieved of any guilt or additional stress.
  • They can hang in there: Let them know you will need them for the duration. Even when the trial's schedule slows down and life seems to return to normal, you will still need to follow your treatment plan. When the trial's schedule speeds up, they should be there for you. 
The professionals looking after you can offer a whole new perspective — but only if you let them know about your concerns or any problems. You might be surprised at the helpful suggestions they come up with to make your life more comfortable and the trial process more manageable. Never hesitate to discuss the trial with healthcare professionals — including members of the trial team — and getting the dialogue you need to feel supported, empowered and confident in your decisions.

When someone you know is in a clinical trial

Whether it is your parent, child, sibling or friend, the trial patient's support network is indispensable. But when someone you know is in a trial, how can you help? Start here by learning more about their condition, what a clinical trial is and what it could mean to them. When you are well informed, you will be confident and prepared to offer support — one of the nicest things you can do for someone you care about.

Conditions

Find out more about your loved one's condition to better understand what he or she is going through.

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Trial participant’s journey

See what a participant's trial journey looks like, from the beginning to when he or she gets the results

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Essentials of clinical trials

What are the stages of a clinical trial? How long do they last? How are participants protected? Find answers to these questions and more.

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Clinical Trial Journey 

See a participant’s clinical trial journey from beginning to end