Support groups: preconceptions and nomenclature

[Moonbear]

While having a discussion with my students this week, a topic came up that I found interesting, and was wondering what other people's views were on it.

We were talking about patient compliance with treatment (for diabetes in this case) and the role and availability of support groups.

The question that came up was whether patients who could really use the educational aspects of a support group would avoid them because of the stigma associated with the term "support group." These groups provide a lot of educational material about managing chronic illnesses, but we wondered if people hear the term "support group" and think of things other than educational material. For example, I think it might be perceived as a place for emotional support...a cry-fest...or group for someone too weak to take care of themselves.

Now, some support groups really are for emotional support, but others are more for learning about how to manage one's treatment and health better.

So, part one of the question is about what you perceive the term support group to mean.

For part two, do you think patients might be more likely to use such a group to learn to better manage their care if another term was used? Some ideas we tossed around as a group were, "Diabetes Education Group," or "Diabetes Management Group." Would such terms have better connotations? Of course, you could substitute whatever illness you preferred for diabetes in these examples. My students tracked down studies to show that patient education and communication with health care professionals improves compliance with treatment, so in addition to spending more time in office visits, they think getting patients to participate in these support groups that also focus more on education would help with compliance and improve long-term outcomes, but calling it a "support group" might hinder that based on preconceived notions of what that term means.

So, if I haven't rambled on beyond the point of comprehension, what do others think about these ideas?

 

[TheStatutoryApe]

Is the structure like a support group? People get together and discuss their experiences and give each other advice? Or is 'support group' supposed to mean a collective with information that they distribute assist diabetes patients?

 

[Dale]

These groups provide a lot of educational material about managing chronic illnesses, but we wondered if people hear the term "support group" and think of things other than educational material. For example, I think it might be perceived as a place for emotional support...a cry-fest...or group for someone too weak to take care of themselves.

I think you are correct. The connotation of "support group" seems to be emotional support. It would probably not be very attractive for people who are either emotionally well-adjusted or who are emotionally uncommunicative.

 

[CRGreathouse]

I think you are correct. The connotation of "support group" seems to be emotional support. It would probably not be very attractive for people who are either emotionally well-adjusted or who are emotionally uncommunicative.

I concur.

 

[Moonbear]

Is the structure like a support group? People get together and discuss their experiences and give each other advice? Or is 'support group' supposed to mean a collective with information that they distribute assist diabetes patients?

I think they still discuss experiences, but it's more related to issues such as glucose monitoring and sticking to healthy diets. I have never had a reason to attend a support group, but I suspect that what they are really like and what TV and movies have made them seem to be might be quite different.

 

[GeorginaS]

Personal experience. I have tinnitus in both of my ears. Now, I knew I had a high-pitched whine in both of my ears for years, but it took having the right doctor who sent me to a specialist to get it diagnosed for me. And he did a lovely job of explaining it to me and what my options were. He also said to me, "Some people are really distressed by it and attend support groups for it" to which my very first reaction was, "I'm going to sit around with a group of strangers and discuss what, exactly? My ears make a constant noise inside that only I can hear. You too?" It sounded ludicrous, to me.

Now, perhaps the support groups are information groups. I may have attended one of those, although I simply did a bunch of research on my own. In my case, had it been called a Tinnitus Information Session/Management/Group, I would have at least thought it had possibilities of being worthwhile.

I can understand the need for and utility of the classic idea of "support groups" when you're talking about something like people with similar emotional experiences such as the loss of a spouse or child getting together and offering each other emotional support. That too makes good sense to me. But those two words "support group" are absolutely fraught with a specific meaning. "Education" not being one of them.

 

[Ivan Seeking]

Gut reaction to "support group" [sorry, but these were my first thoughts]

Depressed women

A recovering alcoholics saying, "Hi, my name is Joe, and I haven't had a drink for 245 days".

 

[Moonbear]

Gut reaction to "support group" [sorry, but these were my first thoughts]

Depressed women

A recovering alcoholics saying, "Hi, my name is Joe, and I haven't had a drink for 245 days".

No need to apologize. This is exactly what I'm getting at, and Georgina seems to have expressed it as well. Because, when I hear support group, that's the sort of thing I think about too...or like Georgina said, things like bereavement groups. I always think of them as ways to deal with emotional issues too, not how to actually deal with treating an illness or disease or disorder. Though, it makes good sense to have a group to share ideas on how to manage one's treatment. With the example I started out with of diabetes, wouldn't sharing recipes, or talking about different blood glucose monitors and the pros and cons of those, or good exercise classes in the area that are easier for beginners, or better understanding of side effects of the medications (and distinguishing medication side effects from effects of the illness itself), and learning more about the complications of the illness and what warning signs to watch out for, etc., be good functions of a support group? Perhaps some need to address emotional concerns, but I don't get the impression that's a huge primary concern of most diabetics.

 

[GeorginaS]

Support groups whose primary function was education and practical information sharing for a disease like diabetes would be a brilliant idea, I think. (For something like tinnitus it's a little goofy because there are no treatments for it. You live with it, pretty much. There isn't far to go in terms of information gathering. Which is what made me laugh when I heard about "support groups" for it.)

But yes, I have a friend who was diagnosed a few years ago, in her early forties, with Type 1 diabetes, and she put a load of time and effort (because she had to) into learning about diet and basic management. I'll ask her if an information sharing group was available to her, would she have, or would she still, found/find that helpful. (And not refer to it as a "support group". I'll use a different word and report back. It's anecdotal, I know, but still, I'm curious to know what she'd say.)

 

[TheStatutoryApe]

I think that the name change would be a good idea. Diabetes Management Group or Diabetes Education Group are good choices. Something that focuses on the purpose of the group so its not just a generic Support Group.

An idea for format: Most people will likely ask what the group is and will wind up realizing it is more or less a 'support group'. Having a session once in a while (not sure what sort of schedule for the meetings we are talking about here) with a scheduled speaker could help bring people in. If they are urged to attend a meeting with a speaker this allows them to be there without feeling as though they will be expected to paticipate. They can then listen to an engaging person discuss the sort of information they need, hopefully with reference to real life situations, and they get to 'scope out the scene' and maybe meet some people.

http://www.apbspeakers.com/diabetes-speakers
How likely you will be able to get any of these people who knows but the program may be able to help direct you to other speakers and organizations where you can find more.