Cancer patients describe what they seek from support groups

A new study finds that many cancer patients would prefer to receive information over emotional aid from support groups, although – over time – their needs could change. Although clinicians and others frequently advise cancer patients to join support groups to deal with the psychological consequences of their diagnosis, a minority of cancer patients actually joins.

“There's a good deal of research about what kinds of groups are helpful for cancer patients, but less information about what they themselves are looking for,” said Allen Sherman, Ph.D., lead author of a new study of 425 patients diagnosed with a variety of cancers.

Sixty-five percent of those surveyed said they would be interested in attending a group. Although Sherman said that this “doesn't mean they would necessarily vote with their feet,” he did say, “It was higher than we expected to find.” Sherman is director of the Behavioral Medicine Program at the University of Arkansas for Medical Sciences.

Most study participants wanted practical medical information about cancer delivered immediately after diagnosis or during treatment. About twice as many prioritized medical information (38 percent) over emotional support (20 percent) and 30 percent wanted a focus on wellness and health promotion.

Eighty-two percent wanted groups to include discussion of spiritual issues; however, Sherman said that his subjects came overwhelmingly from the Bible Belt, so this finding might not apply to cancer patients in other parts of the country.

The study appears in the September-October issue of the journal, Psychosomatics .

Although recent data suggest that such groups do not increase survival time, they do improve coping skills and mood.

Other studies have shown that once people begin to participate in groups, their preferences shift. New members tend to seek medical information, but established members most value the emotional support and sense of community.

The study also found that cancer patients preferred “drop-in” groups that they could attend as needed - and that nearly half did not mind if the groups contained people with many different types of cancer.

According to Fred Rotgers, associate professor of psychology at the Philadelphia College of Osteopathic Medicine, the most important study finding was that “patients often want very different things than doctors think they want, and what patients want very likely shifts over time.” Rotgers was not involved with the study.

He said an important implication is that “support groups might be more useful if they were delivered in a patient-driven fashion, with patients starting off in a group that provides what they most want - and then providing subsequent support groups to address patient needs as they shift.”

Sherman agreed: “Brief groups that focus on medical information and health improvement might be a useful gateway to later groups that address coping resources, existential concerns and emotional support.”

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