Quick Guide – Supporting Cancer Caregivers for CHWs

Community health workers (CHWs) can play an essential role in supporting individuals and families impacted by cancer, including caregivers. This Quick Guide is designed to help CHWs:

1. Provide high-quality navigation and resources to cancer caregivers.
2. Empower caregivers to care for both themselves and their loved one.

Note: Some people say caregiver, others say care partner or support person. There’s no right or wrong word. Use the term that feels best to you or the person you're helping.

Cancer affects not only the person diagnosed, but also those who love and care for them. On average, caregivers spend 8 hours per day providing care. Caregiving for a loved one with cancer is a responsibility shaped by many factors, including:

• the type of cancer
• stage of disease
• side effects
• relationship with the patient

A caregiver’s physical, emotional, and social well-being is just as important as the patient’s. Supporting caregivers strengthens the entire cancer care team.

Common Questions From New Caregivers

Caregivers stepping into this role often ask:

• What should I do now? Where do I start?
• How can I help?
• Can I manage this with my other responsibilities?
• Will I find time for myself?
• Why us? Why is this happening?

CHWs can play a vital role in listening to the patients and caregivers’ concerns and helping to address these questions and provide reassurance.

How CHWs Can Help Caregivers

As a CHW, you can help cancer caregivers find balance, support, and connection. Here are 9 things you can help caregivers do:
 

Find a Support System

Caregivers can often feel alone. It can be difficult for them to talk to their loved ones about their feelings when they both are going through this shared and challenging experience. A support system can be key for a cancer caregiver’s well-being.

Encourage cancer caregivers to:

• Talk with other caregivers who are going through the same thing
• Join a caregiver support group
• Visit a CSC or Gilda’s Club location for free programs and resources

Access Information

Help caregivers normalize the change in everyday life. Knowledge is power. Having the right knowledge and information can help caregivers support their loved one’s needs and help them know what to expect. CHWs can help empower cancer caregivers by:

• Sharing trusted resources, like CSC’s educational materials
• Telling them about CSC’s free Cancer Support Helpline, offering free, personalized navigation by phone and online (call CSC-867-5309 or use the Helpline’s live chat service)
• Sharing helpful videos on the basics of cancer caregiving

Normalize Change

Cancer changes daily life for everyone. Help caregivers to acknowledge that their home life, finances, and friendships may change for a period of time. Sometimes the laundry might not get done, or maybe takeout will replace home cooking. Encourage cancer caregivers to try to manage each day’s priority as it comes.

CHWs can help caregivers:

• Create new routines
• Focus on what they can control
• Know that it’s okay if things feel different

Find Balance

Caregivers still need to take time for themselves. Remind them to:

1. Talk to friends or other cancer caregivers
2. Do things that spark joy
3. Take breaks from caregiving with movement or self-care activities

Make Plans

Uncertainty is a common feeling among caregivers and people with cancer. It’s hard to know what the future holds, but planning where it’s possible can help.

CHWs can:

• Help caregivers plan transportation to and from appointments
• Talk about paperwork, like wills and healthcare decisions
• Encourage caregivers and their loved one to celebrate small wins

Ask For Help

Let caregivers know that it’s okay to ask for help. Caregivers don’t have to do it all, or alone. CHWs can suggest:

• Making a list of things others can help with (meals, rides, errands)
• Using an online tool to organize help, like MyLifeLine, CSC’s free digital support community for patients, survivors, caregivers, and loved ones impacted by cancer

Tip: Help a caregiver make a list of all the patient’s doctors and their contact information.

Remember Their Health Needs

In order to be strong for their loved one, caregivers need to take care of themselves, too. Caregivers often forget to care for themselves. It’s easy for them to lose sight of their own health while focused on their loved one.

CHWs can remind caregivers to:

• See their own doctor for annual check-ups
• Eat healthy foods and drink water
• Get enough sleep
• Stay on top of their own cancer screenings

Learn Self-care Methods

It can be easy to feel overwhelmed by the tasks of caregiving. CHWs can help caregivers notice how they handle stress and teach them small ways to cope.

Activities like meditation, guided imagery, and healing therapies such as art, music, or dance can all help reduce stress. Small breaks are another easy way to replenish energy and lower stress. Even 10 minutes to breathe, walk, or sit quietly can help.

Set Realistic Goals

Remind caregivers that no one can do everything. Let them know:

• It’s okay to acknowledge what you can and cannot handle on your own
• It’s okay to feel overwhelmed
• It’s okay to ask for help

In using these tips, CHWs can play a critical role in preventing caregiver burnout, enhancing well-being, and ultimately improving outcomes for both caregivers and the cancer patients they support.