Support groups exist all around the world, in most all communities, and cover just about every topic you could ever imagine. These groups are designed for people with similar life situations, medical chaos, or illness, and they meet on a regular basis to share news, information, and personal stories. Support groups are safe places to exchange ideas about how to handle difficult issues, or what to expect from new medical treatments. Support groups began as local groups meeting at churches, offices, or designated meeting places. Today, support groups can be found in a myriad of places and with different methods of communicating. Social network support groups, online support groups, phone groups, private groups, hospital groups and more now exist for anyone at the touch of a button.
Support groups can be organized in different ways. Here are the two main types of groups:
- Open membership: Open membership means that members can come and go freely, and long-term commitment is not required. If you are going through treatment and your schedule is not consistent, this may be the type of group for you.
- Closed membership: Closed membership means that registration and commitment to a certain number of sessions is required. Once a specific number of people have signed up, the group is closed to new members. This helps members to establish consistency and to get to know each other better, helping to establish a more personal connection between members.
Some benefits of cancer support groups include:
- connection during an experience that can sometimes feel isolating
- tips and information from those who have been through the same thing
- opportunities to use your knowledge to help others
There are also many major websites that offer video journals and diaries from patients who have been able to share their personal journey for documentation. These types of videos can give a one-on-one feel for those just beginning with support groups and know what better to expect when it comes time to share one’s journey.
What to Expect from Support Groups
While there are no set standards for how support groups are conducted, they are often moderated and led in a similar way by a group leader. Some support groups are led by professionals, such as oncologists, social workers, psychiatrists, psychologists, nurses, or even local pastors. Other groups are led by cancer survivors, which gives a very personal feel to the meetings. Both types of groups have advantages and disadvantages.
- Groups organized by professionals: Trained professionals have experience in setting up groups, helping members get what they need, and responding to people who are upset or angry. However, many times, trained professionals are not always cancer survivors themselves and cannot offer advice from their own experience.
- Groups organized by cancer survivors: Cancer survivors bring personal experience to support groups they organize. For example, a cancer survivor can help those who are newly diagnosed know what to expect. But because many cancer survivors have not had support group skill training, they may not always know how to respond to difficult group situations. At the same time, even without official training, people who have had cancer often have enough life experience to be comfortable when group dynamics get challenging.
After you have decided your support group, you might need to allow yourself time to adjust to the group and the new setting. Some people have an easier time sharing their story than others. You should not feel pressured to share at any time, and it is okay if you never share and only listen. There are also certain practitioner requirements for support groups as well.
- Professionals who lead breast support groups, psychologists, psychiatrists, oncology social workers, oncology nurses, or pastors, for example, should be licensed in their fields and should have some training in group leadership. Professionals should feel comfortable with different personalities and know how to respond to group members who are upset, angry, or have a tendency to take over the conversation.
- Breast cancer survivors who lead breast cancer support groups should have enough life experience and be comfortable enough to handle difficult personalities and challenging group dynamics.
When starting any new support group, be sure to check with the group leader and find out their credentials and experience in leading groups of cancer patients.
Research and Facts on Support Groups for Cancer Patients
There have been several studies about the potential benefits of support groups for people with cancer. In 2005, a review article compared five studies involving support groups for patients with metastatic cancer. The article reported that while one study identified increased survival time resulting from participation in support groups, nine other studies did not show survival benefits. All the studies, however, reported that participation in support groups resulted in positive effects on psychological well-being.
The study that did show survival benefit was published in 1989. In this controlled study, eighty-six women with metastatic breast cancer were followed. Half of the women had been enrolled in a weekly support group during medical treatment. The other half did not participate in a support group. The women in the support group met weekly for a year. In addition to regular support group participation, these women were also taught self-hypnosis to manage pain and holistic ways of living.
The author followed up with participants after ten years. Three of the women were alive and medical records were obtained for the other eighty-three women. The records showed that the women in the support group lived on average twice as long, an average of thirty-seven months, as the women who had not attended a support group, an average of 19 months. The women attending the support group also reported a higher quality of life.
While these study results are encouraging, the results from other studies are mixed on whether participating in support groups can lengthen life. Studies have shown, however, that support groups can provide an increased quality of life for people with cancer, which in turn helps treatment and after care is much more tolerable.
Important things to Consider When Joining Support Groups
- You may find that a support group is helpful during one phase of your treatment, but not so helpful in another phase. For example, if you’ve just been diagnosed, it may feel overwhelming if some people in the group are going through the stress of a recurrence.
- Ongoing issues such as marital problems or depression are better managed one-on-one with an individual counselor than in a support group.
Check with the support group leader before going to a session to make sure your needs are like those of the group. Remember, it is okay to try different groups out until you find the right fit for your needs. Give yourself time and be open to this new opportunity!
Citations:
American Cancer Society
National Institute of Health and Human Services
Cancer Support Community
Gilda’s Club