// Posted by Natalie on 04/14/2012 (2:45 PM)
I became interested in my topic after a family friend was diagnosed with Leukemia. My brother and I received online invites… Read more
I became interested in my topic after a family friend was diagnosed with Leukemia. My brother and I received online invites to join her support page at MyLifeLine.org where we were able to follow her treatment and diagnosis and send her messages throughout the process. It was nice to have a link to her while she was so far away at home and I began to wonder how many other people seek comfort in these types of services. All of this inspired me to begin the project and led me to create my research problem:
How do online communities impact the recovery of patient’s suffering from cancer?
I chose to focus on my friend’s webpage with My Life Line and the website Cancer Support Community. I began visiting these sites on a weekly basis and created an account so that I could sit on discussion boards and read what members were saying. I chose a few guiding questions to direct my search.
- How are online communities different than other support groups for cancer patients?
- Does anonymity play a role in these communities?
- What ways do patients seek support, are they seeking guidance during their diagnosis/treatment or are they looking to make friends?
- Are there any negative repercussions to this style of therapy?
I continued to visit these sites on a weekly basis, to check in with my friend and visit the discussion boards. Cancer Support Community offers a news bulletin and a radio show that I also wanted to look into and make a part of my project; however, I found that there was less of a community dynamic with this aspect of their site. Consequently, I spent the majority of my visits looking at the discussion board.
One thing that I noticed over my weekly visits was the main discussion topics did not change much during the weeks. The threads remained active; however the number of views was always greatly disproportional to the number of posts that were made on each thread. This began to address my initial question of anonymity: obviously lots of people enjoy reading the posts on the site, which requires an account to be made, but not as many feel comfortable sharing in the conversations.
There were lots of posts where people shared their own personal stories, such as I’m in my 20s and just was diagnosed with breast cancer. Several of the comments would be inspirational, such as “just have faith and you can get through this” and others would be responses from other patients who were recovering form the same thing. I found a lot of posts made by younger people who were nervous about the social side affects of having cancer, such as dating, and wanting advice. The younger users wanted more guidance and support on these types of social issues, whereas some of the older users wanted expert opinions with medical questions, such as the best OTC drugs to help with pain or lotions to use on dry skin from radiation therapy.
Lots of patients use this platform to discuss the frustration that they have with their doctors and the medical system in general. This was refreshing to see because lots of the research I had done prior to this project surrounded studies done at hospitals on patients using a physician provided digital community called CHESS. They cited that this program exponentially helped patient’s recovery, even more so than in-person group therapy. What had intrigued me about the CHESS program as that it was set up by the hospital staff to reduce the amount of time physicians needed to spend with patients, so they could look up diagnostic information and therapy tools on the internet without monopolizing a doctors time. The side bonus was that there was the socializing and the community provided as well. I imagined that it would be difficult to talk about your physician in this type of network system; however, the sites I visited had lots of this type of discussion.
Another framework that I built my research off of was the WELL history that was discussed in Turner’s From Counterculture to Cyberculture. His analysis of how housewives found a way to connect and discuss with others on an online forum made me think about the opportunities online communities provide for isolated individuals. It is a gateway for those who do not have an immediate link with others around them and can meet friends through an anonymous discussion board. Turner expressed how in the greater view of the WELL women were often discriminated by men so I did want to find answers about how these cancer sites could have negative repercussions. I was unable to find answers to this so this is something I’m still looking into.
One aspect of the community that I was surprised by was that the number of people who do not have cancer that utilize the site. Lots of friends and family members utilize these online forums to ask questions about their loved ones and provide support for others suffering. I suspect this allows them to have a space to divulge their fears and emotions without placing them on the people they love directly. They can get as verbal about their fears without stressing out the people in their life who do have cancer.
I asked my group for help researching the negative side affects of these sites. I gave them my log-in information so they could peruse for any potential negative repercussions. I also wanted to know of any other personal stories the group had from these types of sites. One person volunteered that they had used a site called “Caring Bridge” when a friend was going through treatment for cancer and they had found it useful. Some of the feedback said that the site does allow people to have pity parties for themselves, which is not always the best solution for depressed people. Since the site is not run by professionals, it does allow the users to feel they can speak uncensored about medical issues, but at the same times people crying out for help may not be seen.
In the future I want to look more into studies and see how these sites influence patient’s mental recovery. Is it safe to have a pity party online when you feel you have already overwhelmed your immediate family with sadness? These are issues I want to look into further. I want to find a direct link to a CHESS simulation if possible as well to see what the medical professionals are using for online therapy. I would like to find a therapist in the area with experience in online communities to see if they have any insight as well. I think that there are several obvious benefits from these types of sites but I have been unable to find any counter arguments, which I would like to make a larger focus on the future. I have seen all of the great sides of these sites, especially since I am biased with my friend’s webpage on My Life Line. I need to do more research to know if this is the reality of these websites. If anyone in group B has comments please let me know.