April 2, 2013

The Power of Healthcare Support Groups

Last week, writing about my AA anniversary, I discussed an excellent essay I'd read about AA... and why it works for some but not others. The most effective element of AA, the author concluded, is "the power of the group."

That was my experience with AA. It's equally true today with my Parkinson's support group.

If you're facing a major illness or  stressful life change, you don't have to go it alone. A support group can help.

No two self-help groups are alike. In most cases, the group becomes a family, a safe haven from the turmoil in the rest of the world.

Support groups are not the same as group therapy, which is a formal mental health treatment that brings together people with similar issues under the guidance of a trained mental health provider.

Support groups can be formed by anyone with the shared condition, or by someone interested in it, maybe a family member. In some cases, support groups are formed by nonprofit organizations, advocacy groups, mental health clinics, or other organizations.

They may be led by professional facilitators or by group members. Some groups are primarily educational. The leader might invite a professional to talk about a topic related to the group's interests. Other support groups emphasize emotional support and shared experiences.

My Parkinson's Support Group
After my AA experience, I began looking for a support group as soon as I was diagnosed with Parkinson's. I didn't have to look far. The Iona Senior Center, a ten-minute drive from my house, has a senior bridge game on Monday afternoons that I attend regularly. It also hosts a Parkinson's support group meeting every Friday.

Based on my AA experience, I showed up for a meeting one Friday, figuring I'd just sit in and see what the meeting was like. Wrong. When I opened the door, the moderator looked surprised and told me I needed to first make an appointment so he could determine if I was a good fit for the group. We met, and he cleared me to join the group.

This group is funded by the Parkinson's Foundation of the National Capital Area, which pays for our facilitator Leon. He's a psychologist experienced in group therapy. He also has early-onset Parkinson's and has lived with it for 25 years. His appearance reassured a newbie like me, since he looks great and doesn't show any serious side effects from the disease.

I thought I'd get information on what medicines and therapies were working for members of the group. Wrong again. Leon made it clear that the group focused on our fears and feelings about living with Parkinson's. When discussions drift toward treatment information rather than feelings, Leon adroitly gets us back on track.

Our group is mostly older men like me, who had fairly high-level careers (not surprising, given the meeting's location in far Northwest DC.)  After my AA experience, I adapted easily to the group's focus on shared feelings. But it's been fascinating to watch what happens to new members who've never had that "sharing" experience before.

At first, the newcomer is startled by the intimate sharing. But within a few weeks, our meetings become a centerpiece of his life. I've been amazed at the effort people make to attend, even our most handicapped members.

The "power of the group." It's too bad it takes a serious illness for us to identify and share our innermost feelings with others.

Internet Support Groups
Since at least 1982, the internet has provided a venue for support groups. We've seen the development of both synchronous groups (where individuals exchange messages in real time) and asynchronous groups, where members not simultaneously online can read and exchange messages.

Email, Usenet and internet bulletin boards have become popular methods of communication for peer-to-peer  self-help groups and facilitated support groups.

Many people who use online support groups are simply seeking information. Others are looking for emotional support so that they don't feel so alone in dealing with their illness.

Most of the traffic for online groups comes from "lurkers," people who read the messages without posting comments. People who are most likely to post are those looking for emotional support. Often these people become a tightly knit clique that scares off lurkers who might consider joining the dialogue.

It's not difficult to find an online support group, but it's hard to find one that meets your needs. In the best groups, members stick around long after they've received the support they needed in order to give others what they themselves found in the group. That dynamic is similar to AA, where experienced members become sponsors to new members.

A good place to start looking for an online support group is www.patientslikeme, where people can share information on treatments and medications. It features forums for all major diseases and conditions.

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Tomorrow, I'll discuss support group "red flags." 

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