Hi guys- great meeting today. Really liked the discussion that we had during the meeting today... everyone was really enthusiastic and that was fantastic!
I talked to Rida and Tenzin tonight after my meal of all-you-can-eat sushi. I'm not doing very well so I wanted to be able to contribute some thoughts here in anticipation of tomorrow's great discussion.
Here goes:
1) lit review: Interestingly, there were not a lot of transplant-specific articles discussing the effectiveness of message boards on pt's coping skills. However, oncology nursing journals provided a wealth of information that could be transferable to the transplant patient population when developing our own message board. I'll email the articles to you guys, as well as a meta-analyses I found specifically on virtual communities and e-support groups and their interactions. The meta-analyses referenced lots of Randomized controlled trials (RCTs) that we could "use" in our lit review as well.
One thing I noticed from lit review is that qualitatitve studies can be done on message boards. Some of the articles I've included are qualitatitive studies so we could take a look at different methodological approaches to researching our e-support groups. What the researchers have typically done is research an existing support group and extract key themes by analyzing messages that were posted over a specified amount of time. I thought this was an interesting approach too, as it was one that did not involve developing a research board, but rather find an existing messageboard to study key themes that we could learn about our patients. It's not very exciting though... as I'm not sure if that's what the judges are looking for. However, it would save us time from having to make a message board to begin with.
2) "burning questions"
As we move forward in our e-support groups idea, I have a couple of logistical questions:
1) How are we going to maintain the message board? Is this message board sustainable?
2) Who will serve as a moderator(s)? Tenzin and I noted on some sites that a select group of pts actually acted as moderators (up to 5 people)
3) How will we "test" our message board?
4) Who will make our message board and what kind of costs are associated with it?
5) What will make our message board unique in relation to existing message boards? Will we provide transplant-specific information on this messageboard as well?
Tenzin also found some great websites showcasing existing e-support groups for transplant recipients. Really interesting and well constructed... definitely check them out!
Anyway, I have to go to sleep... crossing my fingers that I'll see you all tomorrow! Otherwise, here is a good start.
Cheers,
Liz
hey liz--productive ideas!
ReplyDeleteI am not in favour of the idea of a moderator, because:
1) this is a social network solely for the purpose of emotional support
2) the minute a moderator is involved, it will get complicated. a moderator implies, we are responsible. it implies, something more than just "hey how are you" needs to be acheived. for example, pts will ask medical info from the moderator, and if its any of us, its not in our expertise nor should we take the responsibility for it.
3) who will it be? is it voluntarily? is it a nurse? who among us then?
thus, the forum i believe should be just used as a means of creating a community, a sense of belonging, and possible resouces pts can defer from one to another via their own experience
Rida- a couple of points to clarify...
ReplyDeleteModerators could be voluntarily based and do not have to be us. A moderator also does not necessarily have to step in and volunteer medical advice and even be part of a conversation.
If the moderator happens to be a nurse, there should be a disclaimer that no medical advice will be given by moderators on this forum. That needs to be clearly stated in the homepage.
The use of a moderator is for quality control and to ensure that comments do not "step out of line." We need to ensure that no derogatory comments will be tolerated and that is common to all messageboards. If we are to facilitate support, then patients need to know that there is a safe place void of negative unnecessary comments.
-Liz
^ that's absolutely true. But do you think there is anyone that will volunteer to be responsible to always moderate the forum?
ReplyDelete