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From Our Archives: Advocacy
September 14, 2011

Safety in Numbers

There are many ways to connect with other cancer caregivers, so there’s virtually no reason to go it alone.

BY Jane Hill
PUBLISHED September 14, 2011

Stephanie Hepner, RN, OCN, of Dallas, has been leading support groups for the American Cancer Society for almost 20 years. As an oncology nurse, she knows her business from the clinical side, but learned firsthand the intensity of full-time caregiving when her mother-in-law, a kidney cancer patient, came from Ohio for an extended stay.

Not everyone is a “group person,” she says, but caregivers who are inclined to try a support group have many options. Start by asking at a local cancer treatment center or house of worship. Participants usually don’t have to be affiliated with either to join the group, Hepner says. Even caregivers who are reluctant to speak publicly are welcome. Often, non-speakers find their voice, or end up thanking the others for expressing fears, anxiety or grief that they too experience, she says. Occasionally, patients in the group interject to lend perspective. Every member is assured confidentiality, creating a level of trust that inspires emotional honesty. It’s not a “boo-hoo fest,” a common misperception among the uninitiated, Hepner says. 

To find a support group for cancer caregivers, visit Cancercare.org (800-813-4673 or email info@cancercare.org), ask at the social work department of a nearby hospital or treatment center or call the local chapter of the American Cancer Society. Online group support is available around the clock at Cancercare.org

For those who decide to join a group, the National Family Caregivers Association (NFCA), a nonprofit advocacy organization, suggests asking these questions before the first meeting: 

> Who sponsors or runs the group? 

> Who is the facilitator and what is his or her background and training?

> What is its organizing principle? 

> What is the makeup of the group? 

> Where and how often does it meet? 

> What is expected of participants? 

> Can participants just listen? 

> What are the rules of confidentiality?

The Family Caregiver Alliance (caregiver.org) provides advice for caregivers and an online forum to share tips with others. The NFCA and the National Alliance for Caregiving teamed up to create a public education program called “Family Caregiving: It’s Not All Up to You,” accessible at familycaregiving101.org. A brochure called “Share the Caring,” available at thefamilycaregiver.org, has a checklist to help caregivers and their support network create a plan. The National Cancer Institute (call 800-422-6237 or visit cancer.gov) offers informational pamphlets, including “Caring for the Caregiver” and a series of guides aimed at various age groups.

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