Ask CancerCare

December 2006 This Month's Topic: Finding Help Through Support Groups Featured Expert: Richard Hara, CancerCare’s Program Director of Online Services

Q. What are support groups and how can they help me? How do I know if they’re right for me?

A. A diagnosis of cancer can be a life altering event for people in major ways: it often changes their very sense of who they are and how they relate to other people. People with cancer and their caregivers sometimes come to feel that other people, unless they’ve been through it themselves, don’t really understand or “get it.”  Or they don’t want to burden their families or friends with their worries: Why do I feel so bad? What will happen to me?

Joining a support group is an opportunity to meet with people who are going through similar experiences and, by expressing your thoughts and feelings and sharing what you’ve learned, to feel less alone. Group members exhange valuable information and tips with one other about the things that contribute to better care for themselves or their loved ones, such as where to find reliable medical information, how to communicate better with their doctors, and who to contact for resources to help with their practical needs..

Support groups are usually led by professionals such as social workers and psychologists, or by trained volunteers. These leaders help the group achieve its goal of providing mutual aid and support, and are also there to help members individually as needed. Groups that are primarily educational in nature are often called “drop in” groups, meaning that members aren’t screened beforehand and often change from meeting to meeting. Support groups – or supportive-expressive groups as they’re also known –usually require some kind of interview with the group leader to ensure that the prospective member is a good fit with the group. Once assembled, support groups run for set periods of time of about 8 – 12 weeks. Although the majority of groups meet face to face, there are also telephone and online groups available through organizations such as CancerCare.

Are support groups for everyone? Of course not: some people are too vulnerable to the strong emotions that can be expressed in a group, while others are simply not comfortable expressing themselves in front of other people. But if you’re feeling alone and needing information and emotional support, a group might be a valuable way of connecting with people to help you cope with your situation.

Q. I’d like to organize a community support group for cancer survivors and people facing a cancer diagnosis. What do I need to do to get one started?

A. Many people who have been successfully treated for cancer often want to “give back,” by helping other people in their community affected by cancer. Some do volunteer work at a hospital or a non-profit agency, donating their time and money to support their programs. Others organize self-help groups that bring people together to share information and lend each other support, and empower them to better advocate for their needs.

To organize a support group where you live, start by researching what groups currently exist in your area. Local medical centers often offer support groups that are open to the community. If you haven’t already, attend their meetings to observe how they are run. The American Cancer Society, for example, maintains a resource database that lists many local groups; call 1-800-ACS-2345, or access its database online at www.cancer.org. You can also contact national advocacy organizations for specific cancer diagnoses, such as UsToo! (www.ustoo.org) for prostate cancer, to find out if they have chapter where you live. If there isn’t one in your area, ask whether the organization can help you form one. Also contact The American Brain Tumor Association to request its helpful publication, “Organizing and Facilitating a Support Group.” Once your group is established, you might want to partner with health care professionals to help you recruit group members or to serve as expert speakers at future meetings.

In addition to the practical details of finding a time and place for your group to meet, publicizing your meetings so that people show up, and deciding how often to meet, you will also need someone with excellent people-management skills to run your meetings effectively. Meetings run best when they have a defined structure, so it is important that group members determine from the outset what goals they want the group to accomplish and how you, as a leader, will help achieve them. Questions you need to answer include: Who can participate in the group (patients, family, friends, professionals)? What are the rules for discussion and maintaining privacy? Should certain controversial topics (for instance, religion or sexuality) be “off limits”? What mechanism will be in place to enforce your group’s guidelines? Discussing these issues with the group and writing down your decisions can be useful later on for resolving any conflicts that may arise.

It’s always a balancing act to try and steer a group of people who have a diversity of situations, backgrounds, and opinions toward common ground. From our many years of experience in organizing and running support groups, we at CancerCare have found that the questions above can help guide you and provide a framework from which you can build an effective, successful group.

Q. I’d like more information about how to help a close friend being treated for cancer. I’m also wondering if a support group could help me, too?

A. There are different ways to help family and friends as they make their way through their cancer experience. CancerCare offers a fact sheet entitled, “What Can I Say to a Newly Diagnosed Loved One?” that can point you in useful directions. Here are some quick tips to help you to be supportive:

• Listen. We want to be optimistic and positive with people with cancer. However, when they express fear or sadness, simply responding that “everything will be fine” can sometimes make them feel that their concerns are not being heard. Listening to it all – the negative thoughts included -- helps them to share their most important feelings.
• Be specific about the help you can offer. Telling a person with cancer to “Call me if I can help with anything” often puts him or her in a difficult position: Do you really mean anything? When is the right time to ask? It’s better to ask if you can help in a specific way. Perhaps you can research medical information about his or her cancer, or take on necessary tasks like driving him or her to treatment, cooking meals or handling other household chores.
• Support your loved one’s treatment decisions.  We all have our own opinions, but ultimately it is up to the person with cancer to decide what is best for him or her. Offer your own opinion or advice only when asked, and respect your loved one’s right to decide the course of his or her life in the way that accords with his or her values.

In support groups for people caring for a loved one with cancer, it’s possible you’ll find a lot more specific information about how and where people have found medical care, tips for managing the side effects of treatment, and suggestions for finding available resources in the local community.

While caring for someone with cancer can be a full time job in itself, family caregivers and their needs are largely unacknowledged by the health-care system. One of the other major benefits of belonging to a support group specifically for caregivers is that it gives you a place to talk about the emotional challenges of caring for someone while still caring for yourself. As a primary caregiver, there may be things that you feel you just can’t share with your loved one, like your own fears and concerns. Or maybe you’re wondering if other couples have experienced changes in intimacy. Sometimes, just knowing that you’re not the only one having difficulty can relieve some of the emotional drain.

For more information about family caregiving in general, the National Family Caregivers Association offers a wide range of downloadable educational materials. The Caregiver Resource Directory is also a great resource for information and advice about caring for a loved one.

Q. How are online support groups different from regular support groups?

A. Just like regular support groups that meet in person, there are several different kinds of support groups that “meet” in cyberspace. These groups function much like face-to-face groups, but with some notable differences. Because online communication is anonymous, some people find online groups too impersonal. Others find themselves saying (and hearing) much more than they ever thought they would. Only you can decide if a particular group is right for you. Here are a few types:

“Chat” Group – In online “chat,” the conversation takes place in “real-time,” which means that when you type in a message, the other members of the group see it instantly and can respond in kind. A chat group is usually held at a specific time and day.

Listserv – This kind of group allows its members to email each other with questions and comments. Because emails are automatically sent to everyone on the list, the number of messages you receive each day can sometimes be very high and responses to yours may or may not relate to your particular interests or concerns.

Message board – CancerCare hosts this type of group, which features a specific online site, accessible only to members, 24 hours a day, seven days a week, where people can write comments and questions, and read and respond to others’. While communication doesn’t happen instantly, a message board is more flexible, as members can post whenever it’s most convenient for them. CancerCare offers groups for people with cancer, their family members, caregivers, and people who have lost a loved one.

Remember, online groups aren’t meant to take the place of more personal and direct forms of counseling and support.  But they may put you in touch with that one person, or one piece of information, that somehow makes all the difference.

Richard Hara, Ph.D., LCSW, is director of online services at CancerCare. He specializes in lung cancer patients, post-treatment survivors, and family caregivers. Hara is a co-author of 100 Questions and Answers about Caring for Family or Friends with Cancer, a guide for caregivers on coping with the practical and emotional concerns raised by cancer.

The questions and answers listed above are from the December 2006 Ask CancerCare feature.  New Ask CancerCare topics are introduced every month. 

If you have additional questions about finding help through support groups, please contact CancerCare directly for information and guidance. CancerCare provides free professional support services, including counseling, education, financial assistance and practical help. These services are provided by professional oncology social workers. If you have a specific concern or question and would like to speak with an oncology social worker, please contact us at info@cancercare.org or 1-800-813-HOPE (4673).

For questions about medical issues, please visit Cancer.net, the patient information website of the American Society of Clinical Oncology (ASCO).