Starting an HIV/AIDS support group

[IAmTheWalrus]

Hey everyone!

I am a psychology undergraduate student, HIV-negative. For an internship, I was offered the position of facilitating a support group for those suffering from HIV/AIDS in my area. I've got some doubts, but I've discussed them at length with the advisor who runs the internship, and he has given me the go-ahead. I also have met some really supportive, encouraging, and inspiring HIV-positive people who have offered their assistance. I am basically just trying to reach out to anyone who either has HIV/AIDS, has facilitated any kind of support group, or just has any suggestions overall. I'd like to hear everyone's opinion. I worry that it may be difficult to attract members to a group that is led by someone who is not HIV-positive, and who is young and inexperienced on top of that. I've attended Al-Anon (support group for friends/family of alcoholics) for 4 years now, so I am quite familiar with the way a support group runs and I've got some great ideas for topics. I also have an idea of what regulations/rules would be appropriate to establish right from the start. I'm working on the "administrative" stuff now-making contacts, recruitment, finding a time/place, gathering a packet of medical/psychological resrouces for group members.

Any ideas? Feel free to PM me. I'd love to hear everyone's thoughts. In truth, I'm a little nervous, but very excited and grateful for this opportunity. I've been nominated for a Peace Corps position in Sub-Saharan Africa, so I'm interested in learning as much about HIV/AIDS as possible, as well as offering a safe, confidential place for those in my area to share freely and meet others who can empathize.

Thanks, loves!

 

[Raz]

I understand where you're coming from, I don't know how I would feel about having a HIV- person facilitating a support group which is specifically for HIV+ people....it would be different if it were a group for serodiscordant couples, or a support group for people who are indirectly affected by HIV (eg: friends/family)...

I would suggest have a look through http://www.thebody.com/ which is a really good resource for HIV related material. Also, get in touch with your local LGBT community centres/groups and see if you can speak to anyone there who has run something similar.

It sounds like you have great intentions, but honestly I don't think I would feel that comfortable attending a peer support group being run by someone who doesn't understand my issues as a peer...especially if I had just been diagnosed or was having trouble accepting HIV in my life (which is really when people are most likely to actually want to access that kind of service anyway).

PS in case it's not obvious, I am actually HIV+ so just speaking from my own experience/point of view

 

[lola]

^ interesting... but that's like saying that a support group for people with eating disorders should have a facilitator with anorexia, or that a support group for people with cancer should have a cancer patient as facilitator, or that a group for survivors of child sexual abuse should have a victim facilitating, etc....

I guess I just mean that: a. even someone with a similar condition will never fully know what you are going through (for example, what if the facilitator is HIV+ but has a supportive partner and family and you're alone in the world? Then they still don't really know what it's like for you because these experiences are so deeply personal); b. the OP training to be a psychologist, so the whole point of a therapist is that they are a bit removed and thereby not a peer. They just enable the group process to take place and steer it in the right direction. The other people in the group would still be in the same situation as you so can offer peer support...

Not trying to be difficult - just curious I guess...

 

[Raz]

^^^Personally, I think those groups should be run by people who have shared the same experiences first-hand...it's all well and good to be open, empathic and understanding to the experiences of people around you, and the world would be a better place if everyone was like that.....

But when it comes to helping people adjust to experiences they're having difficulties adjusting to, I don't think you're gonna help them as much by not knowing first-hand what they're going through. Coming from my own experience, and from that of the guys who were in my group, we needed someone who had actually gone through what we had gone through themselves, and who had come out the other side well adjusted and thriving. We needed to see for ourselves that it was possible for someone to be HIV+ and actually still be able to live a normal life...not just that there were HIV- people who still liked us but at the end of the day could go home and not have to think about it for half a week till they see us again.

I equate it with something like....I grew up around Koori (native Australian) kids - some of them I consider to be my family, and vice versa. I would never in a million years presume that I have the insight to run a group for Koori people, because as much as I think I understand them and I am proud of our association, I will never be one of them.

 

[lola]

Well... as someone who works in the therapy field I guess I'd wonder what the function of the facilitator is.

I mean, if he is there as a mentor figure, someone to look up to or a role model for the younger and newly diagnosed group members I agree. And there are groups like that - the hearing voices group which is always run by someone who also hears voices, AA, weigh loss programmes always run by previously overweight people etc. And it is good to see someone who went through the same and came out the other end.

But I would also argue that there is a role for a different type of group - maybe a more reflective group therapy based intervention. I mean, if I had to facilitate an HIV support group I would expect my HIV- status to come up pretty early on, and I would actively encourage group members to talk about how they don't feel I can understand them. Because this would open up real conversation about how they might feel this way often, about most people; perhaps even people who used to be their friends, their family etc. Talking about this can enable to offload and talk about the loneliness that often comes with this kind of diagnosis, and the stigma; it can allow members to share their experiences and support each other in a genuine way, and because the facilitator is an "outsider", people would need to explain their experience to the facilitator rather than assuming s/he automatically understand, which can help them reflect on it.

So I think of this as a different type of group. We all hear about and can meet/talk to HIV+ people leading a full and successful lives and there are clubs and meetings and social events for this. But sometimes when being in a good place emotionally seems a million miles away I'm not even sure if having someone who's "been there" as a therapist would necessarily make people feel better about themselves, because then there can also be envy - "s/he's managed it but I don't feel I'll ever get there". And in these kinds of situations, the strength needs to come from within, once you've worked though your own stuff. So while having a role model is good I don't know if it's always better than having someone who is more detached and can help reflect on the situation exactly because they are an outsider.. but maybe it all sounds very unconvincing, not sure

 

[augustaB]

Hi Lola
I think it depends very much on what exactly you're trying to deliver.
I remember when we found that my SO was Hiv+ we went through various stages before splitting up.
When you are newly HIV+, you really want reassurance that life is still possible and really good reliable advice about medication.
Do I need it now, how is it going to affect me, do's and don'ts etc. And then there's the financial side. Am I going to be able to continue working (important question if you are sex worker).
After accepting that you are HIV+ and mourning, you need to be encouraged, stimulated to take a positive attitude: things like healthy diet, taking enough exercise, various lifestyle things. You need to be assured there is a future for you.
I'm not sure how effective a group of peers would be if they were to reinforce negative attitudes within the group. Is there any literature on the subject?

 

[lola]

^ Interesting question... not sure if there is literature/current research specifically about HIV groups, but obviously there have been groups for people with terminal illnesses, disabilities etc. I think HIV is unique because of the particular stigma attached and lack of empathy from many branches of society, so it is more complex, though I've always wondered about the attitudes towards people with lung cancer for example (or any other illness which is perceived by the popular media to be "self inflicted" - quotation marks intended).

But a good group therapist would enable group members to grieve together and express the angst and sense of hopelessness and isolation while trying to steer things in a direction where the answers and insights come from within the group, as part of the process of working through all these feelings and supporting each other, rather than a role-model facilitator saying "it's going to be ok because I've been there and I know what it's like". Just my take on it though...

 

[augustaB]

There's probably a place for both the role model facilitator and the group therapist. Hope this works out and I would love to hear how things go.

 

[Raz]

lola: makes sense what you are saying....I am not really 100% sure I agree with it necessarily, but I'm not 100% sure I disagree either. I guess I can only talk from my own experience; in a one-on-one setting I am comfortable having therapy with an 'outsider'.....I have spoken to a few different people about family issues, and you're right that it did definitely help heaps having an outside perspective to get me to examine things from a different angle.

Maybe in this case I am actually too close to it to be objective, lol....what I am comfortable/uncomfortable with isn't everybody's experience I guess.

 

[IAmTheWalrus]

Thanks for all of your replies. I agree that there are definitely going to be some disadvantages to having an HIV-negative person run the group. However, I think that members realistically must interact with many people who are HIV-negative in their daily life, probably more than they interact with other HIV-positive people. It is important that these people have a place, as someone else suggested, to discuss their feelings about those who do not have HIV, and how they perceive the way others not suffering from the disease feel about them.

As it stands, I am still in the process of getting administrative stuff done-requesting space for the meeting, designating a time/day, etc. Does anyone have any suggestions for setting a comfortable, therapeutic atmosphere? Or any suggestions about how to better facilitate a support group? All comments and suggestions are welcome.

I've been doing research, and I have attended Al-Anon (support group for friends/family of addicts) for several years, so I have an idea of where to start as far as topics go, what kind of etiquette needs to be established in order to ensure that each member has a chance to share, etc. I am also going to meet with long-time HIV/AIDS support group facilitator Jim Geary (who runs support groups on the other side of my county) to have a"mock" group, which will consist of several members of the community, a mix of both HIV-positive and HIV-negative people. This way, I will be able to see how he starts each group, and I will have the chance to ask group members about their feelings and thoughts on the subject.