Over the years, I have spoken at cancer support group meetings, and at conferences and online interviews the organizations sponsored. And yet I do not formally recommend them. Why not? I don’t think they are universally beneficial. Some people find them helpful and supportive; some people find them confusing and upsetting. If I refer patients, they
might feel pressure to stay even if they don't find attending helpful. So, I let my patients decide whether to seek one out.
An article in the European Journal of Cancer Care,
titled “Benefits and Challenges of Cancer Peer Support Groups,” reviewed many scientific publications on this topic. Since the article is both dry and lengthy, I will summarize it.
The benefits of participating in support groups included:
All of these things sound good. Patients have told me they learned things in support groups they would have had a hard time figuring out by themselves. However, while helping others can be emotionally rewarding, it can backfire. Thoughtful, caring people may become so preoccupied by the needs of others in the group that they neglect their own health
and well-being.
The challenges of participating in support groups include:
Confrontation with the sufferings of others
Divergent information needs
Distressing group dynamics
“Divergent information needs” describes how members of a group may disagree about what information they want or don’t want. And in any group, there can be difficult people that create difficult group dynamics. For example, patients can be very invested in their own treatment choices and argue with those who make different
decisions.
Witnessing suffering of other group members can be the biggest challenge. Some support groups focus on patients who have early stage disease, such as localized breast or prostate cancer, where the treatment may have been curative. These patients are dealing with practical and emotional issues stemming from their diagnosis and treatment. Many of the
studies showing benefits from groups involved early-stage cancers.
However, when groups include patients who deteriorate or die, other group members can find it discouraging. Here is a theoretical scenario to illustrate this. In 1999, Dr. Gonzalez and I published an article about the results in our pilot study in pancreatic cancer. One year after beginning treatment, nine of 11 patients were alive, remarkable results for an illness where the typical life expectancy is six to nine months.
Had the patients been in contact with each other, how would those nine patients have reacted to the death of two of the group members? Would they have understood that the overall results for the group were good?
Over the years, patients from Dr. Gonzalez’ and my practice have found each other through various routes. I can think of examples of mutual support, encouragement and lifelong friendship. I also remember one patient who changed her phone number because the other patient was calling at all hours of the day and night. Since I don’t know if an
introduction will be helpful, I don’t put patients in contact with each other.
I believe we all need other people in our lives. But I don't think it has to be a "cancer support group." If a support group helps you, great! If not, that's OK too. Different things work for different people.
