Peer-to-peer

HIV peer support, one of our community’s first responses to the challenges of HIV/AIDS, remains as relevant as ever today.

Dealing with an HIV diagnosis can be a very lonely and isolating experience. Even today, many people feel as if they are the only HIV-positive people they know, making it a very lonely and isolating experience.

The notion of ‘peer support’ — where people with HIV would get emotional support from others who were living with HIV — dates back to the early days of the epidemic. Even when there were few treatments for fighting the virus [1]A small infective organism which is incapable of reproducing outside a host cell., it was quickly recognised that being able to talk about and share experiences with others in a similar situation and from similar backgrounds made a big difference in how you dealt emotionally with HIV.

Many things have changed since those early days, but peer support remains one of the best and most powerful tools we have to bring people together, share our experiences and realise that we’re not alone in battling HIV.

Is it worth doing a peer support group?

Initially, there was one-on-one peer support. It was hard enough approaching one person about your status, let alone a whole group! Of course this still happens and there are many people whose immediate needs are to have a quick chat to someone and get some information about services and to help them get on the right track.

This was and still is extremely useful for many to start with, but one of the great things about going further and doing a group is the variety of issues and perspectives you can hear. This not only breaks down the feeling of isolation by the mere fact of numbers but this broadness can help a person develop effective strategies by choosing those that work best for them.

Challenges for groups

There are challenges for facilitators in making per support groups run well. The participants may be at different stages of coming to terms with their diagnosis and with living with HIV. Some people can be pessimistic or cynical in nature and may ‘bring the group down’ by talking mainly about their fear of dying when some people want to talk more about living with the virus.

On the other hand, some people can seem overly optimistic and may seem insensitive to other participants’ concerns. Different ages, where younger people who are in the early stages of dealing with their sexuality and life in general can have different concerns to older people who have ‘been there, done that’ and have managed to place HIV in a different space.

Some people may be on treatments and some not, and therefore may have different priorities for discussion. Above all, there are the ongoing challenges presented by disclosure to strangers.
To sort these potential problems out, some peer support groups have restricted recruitment criteria, perhaps only accepting people in a specific age range, people newly diagnosed, or those dealing with treatment issues.

In parts of the country where there are fewer people with HIV however, establishing effective groups with narrowly-defined criteria can be difficult, so it may be necessary to define and discuss the things that unite, rather than differentiate, the experiences of the participants. Facilitators are usually trained and experienced in dealing with group dynamics, and so can deal with the many and diverse characteristics that we all have.

Groups or workshops

Traditional ‘peer support groups’ are run on the basis that the participants, not the facilitators, decide what is talked about and how the group operates. This allows individuals to talk about the things that most concern them. It can sometimes be empowering, but not everyone necessarily wants to talk about the same issue — HIV can affect people very differently. There’s the potential for discussion to be drawn out for a long time, leading to the risk that there’s no variety in the topics being covered, and that some members of the group feel that their needs have not been met.

It of course depends on how they’re defined and run, but a ‘workshop’ will usually mean there’s some form of structure set in place and the workshop is guided by a facilitator. A typical workshop might consist of a number of timed activities set by the facilitators that prompt discussion on the various issues that HIV-positive people deal with. The objective of this format is to ensure a broader range of issues can be discussed with out getting into a ‘rut’ over a particular topic.

Whether it’s a group or a workshop, peer support can be a great way of meeting other positive people and sharing experiences with them, at the same time hearing how others deal with the issues that HIV brings up.

Most AIDS councils or PLWHA [2]Person (or People) Living with HIV/AIDS. organisations have peer support programs, and however they operate, they benefit from the ideas, experiences and input of the positive men and women who make up their membership. For details of peer support groups in your area ask your state PLWHA group or AIDS council — their details are on the back page of PL.

Health educator and researcher Vic Perri lives in Melbourne.