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Online Support Community Research!


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For those seeking support for cancer in communities on the Internet, what you find may depend on what you have. So says a new study, which found that online communities for patients with high–survival-rate cancers provide a greater amount of emotional support content than communities for those with low–survival-rate cancers. The study also found that online communities for cancer patients with low survival rates contained more informational content than communities for high–survival rate cancers.

The study was presented at the annual meeting of the North American Primary Care Research Group in November and was led by Lorraine Buis, PhD, a postdoctoral research fellow at the VA Ann Arbor Healthcare System, and co-authored by Pamela Whitten, PhD, of Michigan State University, and Caroline Richardson, MD, assistant professor in the Department of Family Medicine at the University of Michigan Health System. Dr Buis explains that for many patients, online communities may provide a type of support that would be impossible for clinicians to match.

“One of the benefits of online support communities is that unlike clinicians, they are available 24/7,” she said. “For people who are feeling really low at 2 AM, there is something very powerful about being able to go online and read messages within an online support community without having to wait until their clinician is in the office.

While there is certainly value in talking with providers who have clinical experience with an illness, there is real value in talking to others who have experienced an illness first hand, either as a patient, caregiver, spouse, friend, or family member.”

Although the researchers note that both emotional and informational support is widely available, they also found that emotional support was more common than informational support in online communities for all types of cancers.

“It is not necessarily specific medical advice that is the most valuable resource found on an online community,” senior author Caroline Richardson, MD, said. “Support from people who are living day to day with distressing symptoms, making difficult decisions, and facing an uncertain and frightening future can smooth out a lot of the emotional distress associated with a cancer diagnosis and a good online community may provide that for some participants.”

What Online Support is Valuable?

Dr Richardson also notes, however, that while researchers may find emotional and informational support easy to distinguish, for patients, the line between the two may become blurred.

“The distinction between emotional and informational support may represent a false dichotomy,” Dr Richardson said. “For example, users may experience informational support as emotional support or emotional support as informational support. While the distinction is relatively simple to detect and code [for researchers], the impact of the 2 types of support messages on the reader may be less differentiated.”

“A diagnosis of cancer is often frightening and isolating,” Dr Richardson continued. “People who do not have cancer sometimes cannot provide the kind of emotional support that some patients may need. Not every person who is diagnosed with cancer needs an online support community, but many could benefit, and good online communities are probably underutilized resources. It is not difficult to find online support communities even for relatively rare cancers. It may be harder for providers to remember to suggest it as a resource to patients.”

Although a plethora of online support communities exist, not all provide equal benefits, and Dr Richardson offered the following cautions for patients evaluating online forums.

“Perhaps the most critical component of public online community is that it has to be active,” Dr Richardson said. “That is, there has to be a sufficient number of people reading posts and posting comments to the community to keep the information fresh, to respond with empathy to new user posts, and to provide advice based on relevant personal experiences. It only takes one abusive and destructive participant to sabotage even the best online support community so the presence of a good moderator who has the power to deal with such a problem... can be critical. A good online community will also be welcoming to new members and will have a clear FAQ describing the expectations within the community.”

Participants in this study were all members of online support communities for 4 types of cancer: lung cancer, pancreatic cancer, thyroid cancer and melanoma. Members of the study, the first assessing this aspect of support, participated in 8 different online communities

From the February 2009 Issue of ONN

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