BIANCA GHISELLI (blue blog)
For this week’s post, we visited Google’s support group for narcolepsy. Narcolepsy is a condition mostly characterized by excessive daytime sleepiness. The site listed hundreds of posts from people discussing their experiences with the diseases. Members also asked questions regarding their symptoms and possible ways to deal with it. My partner and I focused on 20 posts and coded them according to Braithwaite’s five scheme: information (advice, referral…), tangible assistance (perform a direct task, active participation…), esteem support (validation, compliment…), network support (access, presence…), emotional support (understanding, encouragement…), and humor (was there an intent to amuse?).
Overall, we agreed on most of the codes. All the posts we encountered shared the common theme of advice and how to deal with different aspects of narcolepsy. As such, the replies focused on very specific discussion themes and let very little room for code interpretation. This is why our results were so similar and thus our inter-rater reliability was so high (95%).
Although most of our answers were parallel, there were also a few instances where we interpreted the post differently. For example, in message four, the creator of the thread stated that under a certain medication he had become increasingly violent. One of the respondents reacted by saying that under the same prescription he had had become so aggressive that he was surprised he was “…not in prison.” My partner rated this to be 1 under esteem support as the respondent was validating the other’s feelings (anger). I, on the other hand, believed that he was simply stating his emotions and was not either agreeing or disagreeing. After a brief discussion, we decided that the commenter was indeed providing esteem support by confirming that he felt the same way, and thus validating the other’s person’s feelings (violence).
Our results were very indicative of the type of group we chose. Compared to Braithwaite’s data they indicated that people were more willing to provide information (100% vs. Braithwaite’s 31.3%), tangible support and esteem support (10% vs. 2.7% and 35% vs. 18.6% respectively). Also, we showed no network support as opposed to 7.1%. Finally, our study reflected more emotional support (45% vs. 40%).
We attributed these differences to the nature of the subjects discussed. Braithwaite’s study examined disabilities (self-care, mobility, communication, socialization and employment) which are widely known and accepted. Our study, on the other hand, focused on a far less “visible” condition. While in the disability case, people are mostly looking for emotional support, in our case, members felt like online groups were the only place where they could find information and comfort, as everyone else judges them to be simply lazy.
All (100%) of the posts contained some form of information sharing (e.g. “IIRC has been withdrawn in the US and is no longer manufactured.”) Also, very few messages offered tangible assistance (10%). Our guess is that while information sharing is mostly based on giving advice, tangible assistance is a more invested form of help. This is something that far fewer people are willing to give. Next, we found esteem support in a few messages (35%). In our case, this was found mostly in cases where respondents had shared the same experiences and validated some of the poster’s points. Network support was never found in any of our posts. Emotional support, on the other hand, was more frequent (45%). Almost everyone provided advice followed by a few words of comfort to show understanding and sympathy (e.g. “you are far from alone!”). Finally, humor was found in about 30% of the posts. In this case, my partner and I agreed that although jokes might help “lighten up the mood”, the authors might not always know if they are well accepted by the other party.
Our study agreed with Walther’s four dimensions of attraction to online social support groups. First,social distance. Narcolepsy is a rare disease and thus members appreciate the great expertise available in the larger online social network. This relates to our finding as 100% of posts provided information, thus indicating the great amount of advice people seek out and give. Second, anonymity. Whether perceived or real, it increases he ability to avoid embarrassment and judgment (narcoleptic = lazy) and increases confidence in providing support. In this case, members might not be as willing to provide as well as look for emotional support (found in 45% of posts) if they were afraid of others’ opinions. Next, interaction management. Users appreciate the ability to craft messages carefully and to read at their own convenience. In the narcolepsy group, members came from all parts of the world (different time zones) and asked information on medications that were not provided in their country. Finally, access. This 24/7 online support system allows members to read and write messages at any time of the day or night.
1-2
http://groups.google.com/group/alt.support.narcolepsy/browse_thread/thread/1fa4252d40d64974/b255eb68e1603b03#b255eb68e1603b03
3
http://groups.google.com/group/alt.support.narcolepsy/browse_thread/thread/cb82eb3e9adf4074/4e8b2d5d44804e3b#4e8b2d5d44804e3b
4
http://groups.google.com/group/alt.support.narcolepsy/browse_thread/thread/ab1a61f3a0cbfa97/c99167a762306dda#c99167a762306dda
5-11
http://groups.google.com/group/alt.support.narcolepsy/browse_thread/thread/09e0650c9dcd699b
12-13
http://groups.google.com/group/alt.support.narcolepsy/browse_thread/thread/b40c03c88bdce72f
14-15
http://groups.google.com/group/alt.support.narcolepsy/browse_thread/thread/e256d90472ce7d2c
16-17
http://groups.google.com/group/alt.support.narcolepsy/browse_thread/thread/da19b8d7b0058ad0
18-19
http://groups.google.com/group/alt.support.narcolepsy/browse_thread/thread/97c0b49e79ee8296/d308fc5cb61f95e4#d308fc5cb61f95e4
20
http://groups.google.com/group/alt.support.narcolepsy/browse_thread/thread/cb43c99f20b38afc/99ec859a203e6164#99ec859a203e6164
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