How to Find the Right HIV Support Group

Photo Credit: Martin Barraud/Getty Images 

Start by Defining Your Personal Goals and Needs

By Dennis Sifris, MD and James Myhre - Reviewed by a board-certified physician.

Updated August 19, 2016 

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Few can question the value of support groups in helping you transition from being a person with HIV to a person truly living with HIV. But finding one of value to you and your personal needs can sometimes be challenging.

Why a Support Group?

 

Ultimately, the aim of any support group is to provide a safe, non-judgmental environment where people can communicate freely and find the emotional support they need to better normalize HIV in their lives.

It's not about one-size-fits-all. It's about connecting with people of shared experience and values, with whom you can "speak the same language."

Clearly, for most, that means finding a group of individuals most like you. But that's not always the case for everyone: for some, the need to find specific information or maintain a level of anonymity may be a far more important concern than shared culture or personal interaction.

At the same time, there's often not a lot of choice in some communities. That doesn't mean that support is not available or that you should "make do" with what you've got. Today, support groups can range from structured, in-person gatherings to online chat rooms and forums, oftentimes working in conjunction, or as an adjunct, to each other.

Deciding what you need, first and foremost, is the key to finding the group that's right for you. 

What Are Your Needs?

 

Whatever the format, HIV support groups should be goal-oriented, moving you forward rather than being a dumping ground for issues.

Needs will frequently change and evolve as you work with the group, so it's important to regularly reassess your goals. Ultimately, change is not so much about "outgrowing" a group, but rather gaining the tools for positive, self-reliance.

When looking at a group, consider things like the meeting location and the size of the group.

If a location is too far away, or you feel lost or exposed in a group, you may find yourself discouraged after just a few meetings. Also, ask yourself how you feel about the person who oversees the group. He or she will most often reflect the attitudes and values of that group.

It's also important to ask yourself:

• Is this group able to provide the confidentiality I need to express myself fully and freely?

• Can I speak to this group without fear of embarrassment or judgment?

• Do I require a certain expertise or advice, and, if so, can this group provide me that?

• Does this group provide the kind of support I need to deal with my immediate issues?

• What about the other group members? What has the group experience done for them?

By regularly re-evaluating your needs, you'll be better assured of reaping the benefits of group support.

Clinic-Based Support Groups

 

Clinic-based HIV support groups are often organized as part of the integrated HIV services offered by hospitals, outpatient clinics or specialized HIV practices.

It directly links a patient's medical care to a range of services and support programs, oftentimes with the convenience of a single location.

Clinic-based HIV support groups are generally structured and scheduled and are usually facilitated by a member of the multidisciplinary team providing those within the group a direct link to other services (e.g. counseling, social work) offered by the facility. Walk-in support groups may also be available. As a rule, strict confidentiality policies are maintained.

Institution-Based Support Groups

 

Institution-based support groups are those which may be allied, but not directly associated with your primary care physician or clinic. These groups are generally scheduled and facilitated, with varying degrees of structure or formality. Most are organized through community-based organizations, university-based health projects or faith-based groups.

While most have strict confidentiality policies, some people still fear exposure at even entering a "known" meeting location. In response, some organizations now offer home-based, 
peer-facilitated groups or off-site locations. Groups can be on-going or time-limited, the latter of which requires a time commitment and, occasionally, intake assessment.

Private Support Groups

 

These are support groups that are not officially affiliated with an institution or governmental agency. Some are organized by lay people with HIV (or who have had experience with HIV), while others are facilitated by a social worker or healthcare professional. Private support groups often serve more as a haven for emotional support and interaction, encouraging members to actively exchange ideas, advice and experiences.

Before joining a private group, always inquire about their confidentiality policy and protocols. Be wary of questionable science. While support groups should always encourage open dialogue and allow for personal disagreement, they are meant to function in cooperation with your healthcare providers, not in opposition to them.

Online Support Groups

 

Online support groups serve an important function for HIV-positive people who are either isolated by location or feel they can speak more freely and safely in an anonymous environment. Not only have they become important sources for information exchange, they have been shown to offer often-valuable emotional and coping support, particularly in times of crisis.

With the widespread availability of online peer-to-peer forums and chat rooms, the biggest challenge may be finding a group that can provide the tools you need to move forward, rather than isolating yourself from one-on-one human interaction.

The most productive groups tend to be larger in size, with frequent and vibrant communication between members, as well as the active participation of moderators to spark discussion and help the community thrive.

Learn more about how to find reputable online resources and what to watch out for.

Where to Start Looking

 

• Ask your doctor, clinic or healthcare provider for support group referrals. Your social worker, case manager or psychologist should also be able to assist.

• Contact the state or national HIV organization nearest you.

• Ask other people living with HIV for suggestions.

• HIV support group listings (including online support groups) can generally be found in lesbian & gay publications, or in HIV periodicals and monthlies.

• For faith-based groups, contact your local church, mosque, synagogue or temple.

• Referrals can also often be found through local HIV hotlines. HIV hotlines are usually found in the yellow pages under "AIDS, HIV Educational Referral and Support Services" or "Social Service Organizations.

• Group facilitation websites like Meetup can sometimes help connect you with a live HIV support group in your area, as well as providing a platform by which you can start a support group of your own.

 Sources:

Constantino, Coursaris K. and Liu, Ming. "An analysis of social support exchanges in online HIV/AIDS self-help groups." Computers in Human Behavior. July 4, 2005: 25(4); 911-918.

Potts, Henry W. W. "Online Support Groups: An overlooked resource for patients." He@lth Information on the Internet. April 1, 2005: 44(1); 6-8.

Mo, Phoenix K. and Coulson, Neil S. "Living with HIV/AIDS and Use of Online Support Groups." Journal of Health Psychology. April 2010: 15(3); 339-350.

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