Survivorship Support Groups

May 17, 2010

Recently, I’ve been reading about other countries' health systems, and I’ve been trying to learn about how other countries handle survivorship care. My interest was initially sparked by the national debate. I wanted to do my own fact checking. I had heard such conflicting stories about the NHS in Britain, the Canadian system, and the French system; I really wanted to make the evaluation for myself. By trade, I am a researcher, so I went to the literature. What I concluded is actually unimportant at the moment. In the course of that literature review, I came across some very interesting work. I would like to share two studies with you today.

The first study examined support groups in the UK. The researchers were interested in support group participation on the national level and the perceived benefit of and by participants. In other words, the researchers wanted to study as many people participating in support groups as they could, and they wanted to see if the support group participants felt as if they benefited from the participation. They studied 2883 support group members from 206 different support groups, and the average length of participation in support groups was 56 months. The authors summarize their results in the following statement: the "frequency of perceived benefits was positively associated with length of membership and attendance record" in the support group. 

This study confirms (in the UK) what many experts in survivorship have hypothesized. Support groups are a wonderful resource for survivors. While there are debates about the psychosocial benefits (Does support group participation decrease the probability of experiencing depression or anxiety?), there are undisputed benefits to survivors - survivors generally feel better with participation! Sometimes the difference between two countries would suggest that the observed outcome of a study might differ in those two countries, but I think the perceived benefit of survivorship support groups is a benefit we would observe in most communities - especially and including here in the US.

One of the most interesting papers I have read in the past few years came to me recently from Australia. It was published in the Journal of Medical Ethics, and it examined the "Ethical and Existential Challenges Associated with a Cancer Diagnosis." It was a very small study of only 15 participants; the researchers interviewed each participant and reported the amalgamated responses in the published paper. The researchers suggested that the "existential questions" most often presented to survivors by a diagnosis "included the experience of anxiety and uncertainty about recurrence and metastatic disease" and the "ethical challenges" involved "making meaning of survivorship and questioning of morals, values and relationships." The researchers went on to describe the challenges as "sometimes painful." 

So why did I think this was interesting? Well, first of all, I thought the researchers did something simple and simultaneously extraordinary: they described survivorship as an existential and ethical challenge. I think many survivors could identify with that description. More importantly, I think that by identifying ethical and existential challenges associated with survivorship, the researchers make an implicit case for the need for support in survivorship. One way to get this support might be through  the support groups I mentioned earlier. Support groups will undoubtedly help survivors recognize and face the existential and ethical challenges of survivorship.

Christian McEvoy, MPH

christian@ctchallenge.org

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