When the Diagnosis Is Cancer
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.