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Discussion: I wish my support group had....

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Knoh	I wish my support group had.... Dec 5 2008, 10:47 PM EST Hi Folks- What would help to make healthcare support groups more valuable to their leaders and other members? Is there features lacking in the SL tools? Is the 25 group limit a problem? Are griefers and 'imposters' taking up too much time and energy? Is too much being asked of too few? I would really like an expert to advise me. I need a place to hold meetings. I'm guessing that many folks share some of the same issues, and maybe some have solved them. Perhaps other issues do not have a solution, but with a little thought might. So if folks just add their thoughts to this thread, we may be able to break out other threads on common issues as they coalesce. I am also thinking of putting together a survey and sending it off to the various group leaders to get their thoughts. (I would share the results with those that participated, as well as here.) -Knoh Post reply 1 out of 1 found this valuable. Do you find this valuable? Do you? Keyword tags: None
perplexity	1. RE: I wish my support group had.... Dec 6 2008, 10:52 AM EST Knoh, thank you for posting this great discussion thread! I bet some more questions will come out of this also. Let me take a quick try at some of the ones you started with. > Are there features lacking in the SL tools? There are a lot of us who have been discussing this. The Healthcare Education group talked about this with Pathfinder in October, and the minutes of that meeting are (I think) posted here in SLHealthy. I will check for that. > Is the 25 group limit a problem? You bet it is! This is the main thing we said over and over to Pathfinder, and he said they hear this a lot. Now, I might have misunderstood his explanation, but my understanding was that reason LL has not fixed this is because it is somehow programmed in at a very basic level of the source code for the program. Trying to take it out means reengineering the entire browser from the ground up. UGLY For now, the best solution seems to be Subscribe-O-Matic, which is now FREE for groups under 500. I will post info on that shortly. > Are griefers and 'imposters' taking up too much time and energy? Haven't been a problem for me. > Is too much being asked of too few? Uh, probably. :) But we volunteered. > I would really like an expert to advise me. Check out HealthInfo Island and Health EduIsland. Especially look for the Gallery / Who's Who in Healthcare Education for people to advise. > I need a place to hold meetings. Gentle Heron has a grant funded sim just for the purpose of supporting small support groups. I will try to get her to log in here and provide more info on that. Post reply 1 out of 1 found this valuable. Do you find this valuable? Do you?
Knoh	2. RE: I wish .. 25 group limit problem Dec 8 2008, 1:40 AM EST \| Post edited: Dec 8 2008, 1:40 AM EST I noticed that Preferred Family Healthcare uses ArtiZans Mailbox. The Lite version cost L$350 (http://xstreetsl.com/modules.php?name=Marketplace&file=item&ItemID=584208) While that is almost free, it does cost something. Interested people should probably check out both. Thanks for the tip, Lexi. Post reply Do you find this valuable?
Knoh	3. RE: I wish my support group had... Dec 8 2008, 1:52 AM EST \| Post edited: Dec 8 2008, 1:52 AM EST ...an off/on switch. How does one deal with people from one's support group that need support during non support group times? It is difficult to be there for people in one's group every time one logs in to SL. Some answers off the top of my head: An alt is a possibility, but some may not feel it allows one to be who they are. Clear expectations about what members of the group are responsible for answering one another's IM's is probably a must. (Some groups have been created with 24/7 support as one of their attributes.) Post reply 1 out of 1 found this valuable. Do you find this valuable? Do you?
perplexity	4. RE: I wish my support group had... Dec 8 2008, 7:51 AM EST \| Post edited: Dec 8 2008, 7:51 AM EST For a while I was part of a group that had 24/7 expectations. Personally, I found it overwhelming. They did an excellent job of managing response, but it required a pretty substantial commitment from number of people. I wish there was a way, as with email, to have an automated response. I mean, we want to be available to help all the time, but realistically we can't. If someone can wait, then you will tend to get better information and responses by asking your questions at a time people have set aside to focus on you and the answers. Otherwise, if it is a true emergency it is probably outside of the purview of support, don't you think? I am just thinking that if the question or situation can't wait, really can't wait, then what strategies should we recommend to people as standard practice? Obviously, we should always remind people about the 1-800 numbers that DO provide 24/7 support with real people. We should also provide reminders that if you think you might die or injure yourself you should contact appropriate emergency numbers (and provide examples of how to do that in several countries). This would be a nice resource to have on HealthInfo Island, and then all the support groups could provide an LM to the location with the most current info. We should also remind people to ask their own friends, remind them how to make friends in SL, and mention safe locations that tend to have people hanging around most of the time. I have a selection of these for our newbies, but this is a somewhat different situation. A good question to ponder. Thank you again, Knoh! Post reply 1 out of 1 found this valuable. Do you find this valuable? Do you?
Knoh	5. RE: I wish my support group had... 24/7 Dec 8 2008, 10:12 AM EST I keep two "Emergency Asterisks" on Healthinfo Island that include Avalon Birke's self-harm info. It seems quite complete, but I like they idea of also including some safe areas in SL that usually have folks. I'm thinking The Shelter, VAI, maybe New Citizens Inc (but I don't hang out there much), Dreams has some nice folks too...but maybe busy building. Hoping other's will join in here... Post reply Do you find this valuable?
Poppy_Zabelin	6. RE: I wish my support group had.... Dec 9 2008, 3:26 AM EST \| Post edited: Dec 9 2008, 3:26 AM EST This is a great string, Knoh. Is there features lacking in the SL tools? The main one I miss is a notification when people join and leave the group. I try to send each new member a welcome note ... it gets pretty challenging as the group grows. Some other things on my wish list are a permanent group notices archive (at the moment notices are only stored for two weeks) and a group calendar. Lots that I probably haven't thought of. Is the 25 group limit a problem? Yes. I'm not a subscribe-o-matic fan though. All that green text floating on your screen ... people don't tend to read those green notices properly. More often than not they say 'I didn't get that notice ...' when of course they did ... Are griefers and 'imposters' taking up too much time and energy? It's not been a big problem in practice but it's something to be aware of. The group leader needs to have 'eject' powers and be alert for role play. Is too much being asked of too few? Speaking just for my own (cancer survivors) group, I know that as the group grows I need to recruit and train a bigger support team. I'm working on it! I would really like an expert to advise me. That's what I belong to networks like this for ... I need a place to hold meetings. My group meets on the American Cancer Society island which is also open to other groups dealing with cancer. Contact Stingray9798 Raymaker for information. Hope this helps Poppy Post reply 1 out of 1 found this valuable. Do you find this valuable? Do you?
avalonbirke	7. RE: I wish my support group had.... Dec 11 2008, 9:55 PM EST This is such a good thread, Knoh. I agree with with group leaders and participants like Poppy and Lexi have shared thus far. Wellness Island's mission is sharing resources like this with as many residents and groups as possible. For the last 2 years, my efforts have been to advertise, network, speak at events, provide a large community outreach center for any group/resource that asks, teach workshops, and publish Wellness Magazine, all of which I have found more effective than the 3 groups we sponsor. The personal touch is key, and with 2 RL jobs maintaining that personal touch is also the most challenging part. I have seen some of the support Groups work really well, with folks online a lot providing good resources. Sometimes people cross over into diagnosis or treatment (of sorts) via Group chat, which can be concerning. I see some roleplay but not as much as I expected. I developed a "I Need Help NOW" notecard for in-world and RL support, not only for self-harm but for any resources I could find for someone looking for help when no one is logged on. As with all my materials, I am glad to share - just stop by the island and pick up anything you need (and excuse the dust, we just remodeled a little) :-) I do a lot of training of peer counselors and support group leaders, and Poppy - just ask, I'd be more than happy to help you in any way I can. I have a whole island as well as a mainland center, and can provide space too. We're not grant funded, I support the land and the projects myself by working in-world, but we're still going strong and always want to help any way we can. avalonbirke@gmail.com, or IM or notecard. Glad to hear from you. Post reply 1 out of 1 found this valuable. Do you find this valuable? Do you?
shamblesguru	8. RE: I wish my support group had.... Dec 11 2008, 11:10 PM EST Two contributions .... a) You mentioned considering doing a survey If doing in-world then there is a couple of free survey tools on the 6th Floor of the technology Tower on International Schools Island http://tinyurl.com/2o44dw If doing on the web then lots of free (Web 2) tools listed at http://www.shambles.net/pages/learning/ict/surveys/ .... Google docs does this really well now. b) Groups in-world I created an SL Group "International Schools (k-12) to support work on International Schools Island ... the problem I think is that many avatars are maxed out at their 25 limit and are continually wondering which to delete to join the next ... except we don't want to delete any ... right? So to help with this I purchased a "Subscriber Kiosk" http://subscriberkiosk.wordpress.com I'm very pleased with how this works in-world .... does not take any space from the 25 SL groups ... allows IM and messages and attachments to be sent out .... has an option to archive everything sent in-world (but haven't set that up yet) It also is working at attracting members .... a LOT more people have subscribed in this way than through the official SL Groups function. Downside it is one way traffic .... only out to members .... members cannot send stuff out to others (pros and cons to that) ..... although administrator can give others permissions to do so. Also modifiable so can put on some cool textures .... Other big plus for me is that the main subscriber board is on International Schools Island and I can have LOTS of other satellite boards all over the place .... even other SIMS! The board I've set up can be seen at http://slurl.com/secondlife/International%20Schools/69/83/24 Hope of interest boys and girls ;-) Post reply 2 out of 2 found this valuable. Do you find this valuable? Do you?
Knoh	9. RE: I wish my support group had.... Dec 12 2008, 1:17 AM EST Avalon- Thanks for the support...nice to get some help from you with all that experience. Shamblesguru - I'll check on the survey deals. I was thinking on using SLHealthy discussion forum and you all to come up some interesting questions. I can send it off to the ~150 healthcare support groups that I have identified, plus various email lists. And the Subscriber Kiosk looks good. It is interesting you mentioned the inability to send messages both ways. I find a gaping hole in SL for asynchronous communication like a good ol' message board. There are bulletin (notecard) boards, but they pale in comparison to even a rudimentary BBS. Then again, one can just use the net (EG SLHealthy) Post reply Do you find this valuable?
Kat_Klata	10. RE: I wish my support group had.... Dec 14 2008, 2:02 PM EST anyone with a support group needing a place to hold a meeting, is welcome to use my place..I hold MS support group meetings the 1st Sunday of each month @ 11 SL, otherwise it is available. Just IM me inworld to set up a meeting time. Post reply Do you find this valuable?
perplexity	11. RE: I wish my support group had.... Dec 14 2008, 3:22 PM EST Wow, Shambles, that sounds WONDERFUL! I agree, Knoh, both that SL doesn't do asynchronous very well (ie. group notices), but also that for some of this outworld tools suffice (but not for group notices <g>). I know Ability Commons has meeting space for small support groups to reserve. Kat mentioned she does also. I think HealthInfo Island has sometimes done that. Perhaps we need a new page for recommended place to find a place to meet. Also, Kat - please add a note about available space and restrictions/guidelines to the page for your group? I think having the information in more than one place is a good thing. :) Wonderful discussion, folks - best EVER!! Post reply Do you find this valuable?
Kat_Klata	12. RE: I wish my support group had.... Dec 15 2008, 2:44 AM EST sorry, I should have mentioned there is seating for approximately 15 but can add a few more cushions..restrictions/guidelines, open only to groups devoted to helping people with disabilities. Post reply Do you find this valuable?
Muse_Carmona	13. RE: I wish my support group had.... Dec 21 2008, 7:08 AM EST GimpGirl's disability accessible sim in 3DE is open to other disability groups who share similar philosophies and interests to our own and there are many spaces to meet there. The best contact is JennyLin Arashi, but I'm in world more so contacting me is fine too. My gaming parlor/teahouse/dance hall and skybox in Caledon Southend are open to meetings & parties and wheelchair accessible; I reserve the right to turn down anyone for any reason but generally am looking for a positive, advocacy & peer support centered, nothing-about-us-without-us approach to things, and require compliance with the Caledon covenant (go anywhere in Caledon, click about land to see it). Basically we have anti-discrimination rules and roleplay is not required in Caledon but you should be dressed in proper clothing (of any era) below 750m. NonProfit Commons spaces are also available -- it would be nice if someone could find out the rules on booking those. Post reply Do you find this valuable?
Muse_Carmona	14. RE: I wish my support group had.... Dec 21 2008, 7:12 AM EST I wish I had a support group for leaders of support groups! -seriously I need to be able to discuss issues like how to deal with people who threaten suicide or disruptive people -a group to maintain a calendar and make coalitions with other groups for the purpose of hosting events. -to be able to find out what other groups are doing so i can make referrals as necessary. -and to have a place where i feel like i can discuss my own stuff without feeling like I need to Set An Example. Post reply Do you find this valuable?
Knoh	15. RE: I wish my support group had.... Dec 21 2008, 2:35 PM EST Muse: There is the The Health Support Coalition that is for Support Group Leaders. (More at: http://tinyurl.com/98sv2z) I understand it is strictly for those actually leading groups, as such, I am not a member, but I'm sure others can speak to it. I'm working on the calendar...I think we really do need one. The SLHealthy events is great, and I like how the community keeps it up, but inworld would be cool, and including all the weekly meetings is where I think the big benefit would be. Thanks for the info on GimpGirl and your space on Caledon. Post reply Do you find this valuable?
Muse_Carmona	16. RE: I wish my support group had.... Dec 21 2008, 6:57 PM EST That link is bad, and as far as I can tell using in world search tools the Health Support Coalition no-longer exists. Post reply Do you find this valuable?
Knoh	17. RE: I wish my support group had.... Dec 21 2008, 7:31 PM EST Hmm...sorry about the link. Here's the direct one: http://www.slnn.com/index.php?SCREEN=article&about=health-care-support-coalition-forms ..and you are right, the Health Support Coalition isn't in search. I thought I had seen it fairly recently. Perhaps some of the principles will start the group up again. There definitely is a need for something along those lines. I know some of them are active in SLHealthy and might jump in here shortly, 'cept for the holidays. One way or another such a group will be formed. Best to see what some of the other folks know. Post reply Do you find this valuable?
Muse_Carmona	18. RE: I wish my support group had.... Dec 21 2008, 11:16 PM EST I've talked to some people about the topic, actually. We were discussing forming one that meets once or twice a month after NPC meetings. Post reply Do you find this valuable?
Knoh	19. RE: I wish my support group had.... Dec 22 2008, 1:33 AM EST Just chatted with one of the members, Gentle Heron, and the Health Support Coalition is still active. Somehow the 'show in search' box got unchecked. It should be coming up in search soon. (Not showing up for me as of this writing, but it might not update so quickly.) Post reply Do you find this valuable?

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