Understanding Your Role as a CAR T-Cell Therapy Care Partner
Why is a care partner essential during the CAR T-cell therapy process? This animated video explains the role of care partner when supporting someone undergoing CAR T-cell therapy and provides advice and tips for their own self-care.
See More from The Care Partner Toolkit: CAR T-Cell Therapy
Related Resources:
CAR T-Cell Therapy Care Partners | Understanding Your Role in Patient Care and Recovery |
An Essential CAR T-Cell Therapy Team Member | The Care Partner |
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Transcript:
As a care partner, you play an essential role in supporting your loved one through the CAR T-cell therapy process. Your responsibilities will go beyond emotional support into active caregiving, medical monitoring, and close communication with the healthcare team.
It’s important to gather as much information as possible early on in the process.
Start with these questions:
- Who are the essential members of my loved one’s healthcare team?
- CAR-T therapy involves a multi-disciplinary team and you should know the members, who may include hematologists, oncologists, nurse practitioners, pharmacists, and social workers.
- What are my responsibilities as a care partner?
- Your role is an essential part of your loved one’s recovery and may include administering medication, monitoring for side effects, and keeping track of medical appointments.
- What can I expect during the CAR-T therapy process?
- Understanding how the process works and what your loved one will experience will help you prepare for CAR-T therapy and the recovery period.
- What can I expect when my loved one leaves the hospital?
- When your loved one comes home, you need to understand how to assist them, what side effects to watch for, and when to call for help.
- Who do I contact in case of an emergency?
- Know the 24/7 contact information for members of your healthcare team. Some side effects can escalate quickly, and fast action may be needed.
And while you’re busy supporting your loved one, it’s crucial to recognize your own needs. Care partner burnout is real, and to provide the best care, you must stay mentally and physically healthy.
So, what can you do?
First, recognize when you’re stressed. Signs of burnout can include fatigue, irritability, or feeling overwhelmed. Don’t try to handle everything on your own. Ask family members for help and talk with friends – sharing your challenges can reduce stress.
Remember to practice self-compassion – it can help you cope during stressful times and to manage unrealistic expectations that you may place on yourself.
- Next, arrange for help. If caring for your loved one becomes overwhelming, consider hiring professional in-home caregivers, even temporarily, to give yourself a break.
- Make self-care a priority. When time allows, take advantage of opportunities to recharge. Self-care is not selfish – it’s essential for your health AND for success in supporting your loved one.
- Finally, you don’t have to go through this alone. Ask about support. Many cancer centers offer resources and support groups specifically for care partners – you can start by talking to a social worker or a mental health professional about your needs.
And, advocacy organizations like The Leukemia & Lymphoma Society (LLS), American Cancer Society, and Caregiver Action Network provide assistance for care partners, including helplines, counseling, and community connections.
For more care partner tools and resources, visit powerfulpatients.org.
