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Author Topic: Starting a support group...Help  (Read 4236 times)

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Offline LoriTomatoe

  • Member
  • Posts: 6
Starting a support group...Help
« on: November 29, 2006, 05:27:20 PM »
Any info would be greatly appreciated.  Here is my dilemma in a nutshell.  I am the mother of an HIV positive child and want to start a support group with other families with HIV postive children.  I think it would be good for the kids to know they are not alone and good for the parents to share stories of how they disclosed this information to their children.  The problem is our only source of HIV/AIDS help and case managers has no support groups that meet at all.  I found out from my child's case worker that two other mothers have asked her the same thing.  I am going to bring this to the director tomorrow, but if he says no, how do I proceed?  With confidentiality and HIPPA laws it will be impossible to find these other very interested people.  Any ideas? 
Without Faith....why bother?  Hope is the cure

Offline Ann

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Re: Starting a support group...Help
« Reply #1 on: November 29, 2006, 08:39:39 PM »
Hi Lori,

You're right, you won't be able to get the contact details of other people.

However, you might be able to put some posters up or leave leaflets around (at the office where your case worker is or in an ASO) saying what you want to do and have YOUR contact details on it. You can set up an email account, a P.O. Box and/or a cell phone number dedicated to this. If you use posters, put your contact details in a row at the bottom, (like a dozen or so, at right angles to the edge of the paper, with a little cut between them) that can be torn off the main page.

You could also take out a small classified ad in your local newspaper and the paper might even have their own P.O. boxes for replies. You might also think about contacting POZ magazine for the same purpose. Ask at your local ASO as well - they may have a newsletter you can advertise in and they might even run an article about it.

Whatever you do, don't use your home address or phone number or your main email account. Use a P.O. Box (I think charities can get a discount rate) or a cell phone or an email account that you create specifically for the purpose. Don't use contact details that could be used to trace your actual whereabouts.

Good luck!

Ann
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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

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Offline rk@aids-write.org

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  • Posts: 57
    • aids-write.org
Re: Starting a support group...Help
« Reply #2 on: December 03, 2006, 11:47:29 AM »
option b: train yourself as an emotional support group facilitator.

i don't know quite where you are in the country, but in the los angeles area, there's a community-based empowerment group called the life group la that, among other things, trains facilitators for emotional support groups. (meaning you)

their site is

http://www.thelifegroupla.org/

sunnie rose and ric parish would be the people to contact for assistance.

namaste

---rk
dark and bright
deep and clouded
sinister and resilient
sung and un
piece by piece
picture the truth

http://aids-write.org

Offline TLC

  • Member
  • Posts: 3
Re: Starting a support group...Help
« Reply #3 on: December 04, 2006, 11:33:37 AM »
Hi there!

 I lost my mother and step father to AIDS. My grandmother lost her only daughter to AIDS and I lost my mother, best friend and soul mate! If there is anything I can help you with please let me know. I have been involved in the AIDS community ever since I could remember. Good luck and best regards!

Offline DanKenny

  • Member
  • Posts: 147
Re: Starting a support group...Help
« Reply #4 on: December 16, 2006, 07:54:34 PM »
Lori,

Good plan.  I am also a parent of a + kid.  Sometimes, it feels so alone in not finding anyone else to discuss such matters with (apart from dealing with our own infection, our kids have unique issues too).  My hospital doesn't have a support group..though they have a big pediatric HIV unit, consisting mainly of older kids.  I am also suggesting something like this to the case workers.

One way to convince them is to use the emotional/psychological support argument.  Indicates the value of information sharing, and mutual support ..beyond what is provided in the formal clinic settings. Indicate the value of enabling kids to discuss their own situations with each other, guided by valuable / accurate clinical information from the support groups.  Also, such a support group will deal with concerns (especially about death) by other family members (especially negative siblings).

The TheresaGroup in Toronto Canada (http://www.teresagroup.ca/) deals specifically with these sorts of issues, and it would be nice to point to such models.

Please, let us know how you are doing....

rgds, DK
My Progress:

09/07:   771   ~    <50     ~   29%
03/07:   493   ~    227      ~   22%
02/07:   Began Meds ~~ ATRIPLA
01/07:   315   ~   45, 000  ~   18%
10/06:   350   ~   32, 430  ~   22%
04/06:   440   ~   23, 997  ~   24%
07/05:   621   ~   36,000   ~   24%
01/05:   842   ~   2306      ~   28%
07/04:   615   ~   3370      ~   27%
04/04:   674   ~   739        ~   26%
11/03:   439   ~   2800      ~   22%
Infected probably around 1997 / Diagnosed 2002

Offline Joe K

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  • 31 Years Poz
Re: Starting a support group...Help
« Reply #5 on: December 17, 2006, 05:05:45 PM »
Dear Lori,

First off, kudos for seeing a need and trying to fill it and in cases like these almost anything goes in getting the group started.  What I find works very well is to couch everything in TERMS OF THE NEEDS FOR THE GROUP and what you might need in terms of support from your ASO.  I do not think that Hippa will stop you from forming anything, assuming you are willing to put your name out into the community.  Like Ann suggested, a few well placed posters at the ASOs and drop off fliers to the docs who treat the kids of the community.

Trust me that the needs is always there and I would hope that the Director would be responsive to your needs.  If he/she tells you that nothing can be done, then ask them "WHAT WOULD YOU DO???".  In cases like this you really have to stand your ground and stress the need and benefits of such a group.  The cost to host such a group can be minimal and depending upon your goals for the group, you may not need any formal training at first, assuming the group can agree on a group facilitator.

If your director will help you, there are many ASOs that would be happy to share group experiences with you, including the mechanics.  There are also a number of us who have group leading experience and would be happy to guide you.

Best of luck and thank you for caring enough to get involved.

Offline AustinWesley

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  • Posts: 815
    • HIV Discussion Group on Myspace!
Re: Starting a support group...Help
« Reply #6 on: December 19, 2006, 02:16:39 PM »
Any info would be greatly appreciated.  Here is my dilemma in a nutshell.  I am the mother of an HIV positive child and want to start a support group with other families with HIV positive children.  I think it would be good for the kids to know they are not alone and good for the parents to share stories of how they disclosed this information to their children.  The problem is our only source of HIV/AIDS help and case managers has no support groups that meet at all.  I found out from my child's case worker that two other mothers have asked her the same thing.  I am going to bring this to the director tomorrow, but if he says no, how do I proceed?  With confidentiality and HIPPA laws it will be impossible to find these other very interested people.  Any ideas? 


You are a great mom!   I'm lucky to have a family who is very supportive.   I run a discussion/support group on Myspace which is free and easy to use.   You can start one there as well.   It's hard to get families involved, but I see a definite need for it.   As the other person suggested consider printing up some simple posters locally.   Perhaps you could have small pot luck meetings at your house and a whole variety of social events.

One of my friends has just started one locally.   He is an HIV counselor so of course finds new people willing to get involved for his particular group.   I also belong to another organization which is strictly for social gatherings for HIV+ people and their partners.   I hosted a party at my home this weekend for the first time and it turned out to be a great experience.   

Many family members are not aware of their kids diagnosis.   It seems about half I talk to are too afraid to tell them for a variety of reasons.   The social stigma is worse than ever and I am thrilled to hear a parent speak up and want to do something.

I'd consider contacting PFLAG, Parents and Friends of Lesbians and Gays for some ideas on starting up.   Having some confidentiality rules in place is essential as many support groups fail because a member shares info. about another member etc.    However, you may want to hand pick some other good people to help you keep it coordinated and brainstorm over getting started.

I don't know where you live, but once you have a poster together see if you can get some HIV counselors or other HIV treatment centers to agree to let you post them.   It may take some effort, but I think you will find many others.   


Wesley
Diag. 3/06  Infected aprx. 2 mo. Prior
Date        CD4   %      VL
4/6/06     627    32    36,500     NO MEDS YET!
6/7/06     409    27    36,100
8/23/06   408    25     22,300
1/2/07     354    23     28,700
2/9/07     139    30     23,000  Hep A Vaccine same day???
2/21/07   274    26     18,500 
3/3/07    RX of Truvada/Sustiva Started.
4/5/07    321     27      Undectable 1st mo.  
5/16/07  383     28    Undectable 2nd mo.
8/10/07  422     32   UD <48 on new scale!

Offline SunnieRose

  • member
  • Posts: 1
Re: Starting a support group...Help
« Reply #7 on: February 09, 2007, 03:38:16 PM »
option b: train yourself as an emotional support group facilitator.

i don't know quite where you are in the country, but in the los angeles area, there's a community-based empowerment group called the life group la that, among other things, trains facilitators for emotional support groups. (meaning you)

their site is

http://www.thelifegroupla.org/

sunnie rose and ric parish would be the people to contact for assistance.

namaste

---rk

Thanks Richard for this posting....  Where are you located?  Perhaps i can refer you to a training close to you in the event you are not either in California, or can access our training in the Los Angeles area.

I do concur with you that this is an unmet need and have actually been working with a very active youth CAB at USC to begin supporting HIV+ youth and their families with very similar programs that we are already currently offering.

ALL The Life Group programs serve people whom are infected as well as affected.  At this time we have not received the "ask" for such a group as you described.  However.. whenever we hear from a number of people about an unmet need, we fill it.  An example would be that recently we were asked my several people for an HIV over 50 group.  We didn't have one, started one, and in two weeks, the group is filled to capacity and we will shortly open a new group with the same focus.

Perhaps a silly question, and maybe I missed a post.... but have you checked with a local children's hospital to see if emotional support services are already being offered?  One of my personal responsibilities is to not duplicate services.... but rather to find where they are being offered... and if not utilized... why.

Most Sincerely and wholeheartedly willing to support your endeavor,
Sunnie

P.S. Please copy posts to me to sunnie@thelifegroupla.org as I may not always have the opportunity to log on here to reply to pending posts or questions directed to me.


 


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