Should you join a peer support group? Probably. Just make sure you choose the right sort.
Oct. 9, 2000 -- June Forman strikes you as the kind of woman who does things right. Whether she's taking on the role of guest chef for an evening at one of Lake Tahoe's gourmet restaurants, trekking in Thailand, or kayaking on the Truckee River, she's enthusiastic, capable, organized, and prepared. So it was no surprise that when faced with breast cancer at 51, she met the challenge head-on, gathering information and interviewing doctors.
Then, after the first of four planned chemotherapy treatments, she joined a support group for women with breast cancer. She looked forward to the opportunity to share her feelings and fears with others like her, as well as to tap in to their reservoir of knowledge.
She had good reason to believe that the experience would help her. After all, respected physicians like David Spiegel, MD, a professor of psychiatry and behavorial sciences at Stanford University School of Medicine in Palo Alto, Calif., championed support groups in the 1980s with much-publicized research showing that they increased survival among a group of women with breast cancer. Another study published in the Oct. 2, 1989, issue of the Lancet showed that women with breast cancer who joined such groups lived longer.
But Forman had a very different reaction. Instead of steeling her resolve, the experience undermined her strength, she says. "I felt like my armor had been pierced. People were sharing things with me that I really didn't need to know," Forman says. "I was usually feeling strong and positive, but when I went to that group, the bad feeling would echo for days. I felt drained afterward."
Support for Those Who Need It
Forman is not alone in her response. A recent study, published in the March issue of the American Psychological Association's journal Health Psychology, found that women may indeed be disturbed by the self-help group experience, and tests of their physical well-being showed some detriment in their ability to function.
The study looked at 203 women recently diagnosed with breast cancer. Most of them had early-stage disease, and all had a good prognosis. The women were randomly assigned to an education group, a peer discussion group that did not include an educational component, a group that provided both education and peer discussion, or a control group. All groups, except the control, met one hour a week for eight weeks. Each week the education group had a visiting expert -- a nutritionist, an exercise physiologist, or an image consultant, for example -- lead the discussion. The peer group was led by an oncology nurse and an oncology social worker trained to facilitate support group discussions.
Lead investigator Vickie S. Helgeson, PhD, associate professor of psychology at Carnegie Mellon University in Pittsburgh, says that in the educational groups tests of the participants' emotional and physical well-being indicated that more people had a positive experience rather than a negative one. The benefits were greatest for those who were having the most difficulty coping with their illness. These women were more likely to be receiving little support from their partners or had negative interactions with them, and had low self-esteem.
Women who fit a similar profile also appeared to benefit from the peer support group. However, Helgeson says, she and her colleagues were shocked to find that women who were satisfied with the support they received from their partners, family, and friends didn't fare as well. Some of them seemed to have actually deteriorated slightly on tests that measured their quality of life, including pain, physical functioning, limitations caused by physical and emotional problems, vitality, and social functioning.
There are many possible explanations, report the study's authors. For instance, the women who thought their support was adequate may have reconsidered when they heard the negative stories of women who didn't have good outside relationships. Helgeson tells of a woman who said her mother-in-law was kind and gracious, yet she repeatedly told stories of this woman's unhelpful behavior during the support group sessions. The group finally told the woman that her mother-in-law actually sounded very mean. As a result, the woman's perceptions of her relationship might have been altered.
Support Group Pitfalls
The comparisons that people invariably make when they hear others' stories aren't always helpful, as Forman found out. "If you hear that another woman with your condition is not doing well, you may feel threatened and more worried about your condition," says Helgeson.
Helgeson is continuing to follow the women who participated in her study to determine if they might have a different view of their experience over time. She says, "If you take someone who doesn't want to talk about her cancer and have her come to a support group so she can talk about it, it's definitely going to increase her distress in the short-term. But the question is, will it eventually have therapeutic value? I don't think the evidence is clear on that issue."
New York psychologist Sandra Haber, PhD, who counsels people with cancer and urges most of her patients to join a support group, agrees that long-term responses might be different. She cites the example of the woman who was told by the group that her mother-in-law wasn't being as kind as she thought.
"When you're making a person look at things differently, it's rough in the short run, but sometimes that results in healthy behavior in the long run," Haber says. "It's certainly worthy of more study."
Diversity and Equality Not Always Good
The group that Forman attended was a hospital-based program that, like many groups across the country, included women with all stages of breast cancer. In Forman's group, some were newly diagnosed and had not yet started treatment, while some were battling recurrences. And that may have been part of the problem.
The highly regarded New York City peer support group Self Help for Women with Breast or Ovarian Cancer (SHARE) makes an effort to avoid that kind of mix. SHARE spokeswoman Cydney Halpin says, "We would never put a newly diagnosed woman in with a group of women with advanced disease." SHARE leaders also match women according to age, marital status, and religion.
SHARE groups are led by breast cancer survivors who have been trained as facilitators, which Forman believes may have also made a difference to how she felt about her own support group. Not having a person in charge to keep the discussion on track contributed a lot to her dissatisfaction, she says.
SHARE's philosophy is that it's more important that the facilitator be a breast cancer survivor than to have a professional degree, but not everyone agrees. Helgeson believes it's less helpful to put a nonprofessional in charge because of her lack of training. Haber takes the middle road: She strongly recommends that a professional be in charge, but she refers women with cancer to SHARE and says the training program is quite good. Nevertheless, she says, the more diverse the group, the stronger and more experienced the leader must be to make the sessions productive.
Clearly there are no hard-and-fast rules, and at the moment the evidence promoting any particular support group model is not in. Haber's advice for women newly diagnosed with breast cancer is to try one or two groups and see how they like it. "There is rarely a downside to trying something," she says. It's also helpful to find a group of people with whom you have something in common besides the illness.
As a result of her negative experiences, Forman says she now knows what she's looking for in a group. "I might join a group that is geared more toward spiritual, psychological, and physical wellness, rather than a group that was stuck focusing on the problem of cancer."
Dianne Partie Lange is the co-author of Informed Decisions: The American Cancer Society's Guide to Cancer Detection, Treatment, and Recovery and the ACS's Cancer And Women. She is also a contributing editor to Allure magazine.
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