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Reged: 01/13/11
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Starting a new support group. Need help with ideas
      #253894 - 01/13/11 07:53 PM

I am a social work intern at a HIV outpatient clinic. I am looking to start a support group for new patients at the clinic or for patients that have been newly diagnosed. Obviously i have no idea of what I am doing so I was just wondering what kind of activities or topics that people have been to that they have found helpful so i can incorporate it in my group.

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Reged: 06/18/09
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Loc: Georgia
Re: Starting a new support group. Need help with ideas new
      #253954 - 01/19/11 09:36 PM

I speak from experience. I've been chairing/co-chairing an HIV support group for the past 5 years.

No matter what topic you choose someone is not going to like it. This is a feeling you're going to have to deal with when dealing with the newly HIV infected.

They've recently been told they have a deadly (WRONG!), incurable disease. Most if not all of them are probably going to be going through the hate-someone-for-it stage of the disease. They hate the person that gave them the disease. They hate themself for not being more careful and preventing the disease. They hate the government for not doing more to prevent the disease. The list can be nearly endless.

I don't know what kind of time you have to work with here, so I'm going to give you a couple of topics that can be run from one meeting to the next.

1) Who are they angry with? (Many won't admit to being angry, but they need to in order to move past that stage.)
2) How does HIV work? Go into detail about how the virus infects the CD4 cell, reproduces in the cell causing it to explode, and goes out to infect more. These people have the disease. There's no reason they shouldn't be informed as to how the disease operates.
3) What treatments are available? Discuss the early days when there were "questionable" or no treatments. Discuss some of the early meds now relatively unused. Let them know that AZT was the first and is still a good med. Discuss why everyone isn't on the same meds. Discuss drug resistance.
4) What are the signs of being infected? Can you look at someone and tell they've got the disease? What are some of the more common opportunistic infections?
5) What is the history of HIV. The movie "And, The Band Played On" is an EXCELLANT movie to watch if the group has the time. (I've been infected for more than 20 years, and I still tear up everytime I watch it.)
6) What should they be doing to keep themselves healthy now that they have this deadly (WRONG!) disease?
7) What are some of the misperceptions regarding this disease? (Don't drink from the same water fountain. Feed "them" with paper plates. Etc.)
8) "I woke up this morning, and I just couldn't get out of bed." "My legs are swollen." "My hands feel like pins being stuck in them all the time." Discuss possible side effects of the disease and the treatments. (They're really going to love hearing about all the side effects from the meds. But, hey, at least they don't have to deal with the Crix belly/hump. Or, the Norvir runs....)

The thing about many of the above topics is that they can and should also be discussed with people who have been infected for more than a couple years. Basically, it's a primer into the life of a very complicated disease.

Let them know that just because they have a disease their lives are worth no less than anyone else's. Listen to them talk about day-to-day living with the disease. Hear if they experience any discrimination and what to do about it.

They need to know that HIV has been around for roughly 30 years. That there isn't a great deal of research done, because they and others who are infected are the first line. Scientists are doing the research now and always finding out new information. They need to stay informed.

They need to take control of the disease. Don't let the disease take control of their lives.

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Reged: 06/04/10
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Re: Starting a new support group. Need help with ideas new
      #253961 - 01/20/11 09:17 PM

I am a psychologist, working in the HIV world for 25 years. i've run an HIV support group called Diversity in Philadelphia for 17 years, still going strong. i'd be happy to correspond with you.

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