From Idaho, USA:
We are RN's who work in a busy Medical Center. We are currently working on a needs assessment for our area concerning Type 1 diabetes. Our goal is to set up a diabetic support group for children and their parents. We have a diabetes specialist nurse working with us, but her time is limited. Do you have any suggestions as to who we could talk to in order to gain information/ideas on support groups already formed? Who could we talk/interact with that might help us with questions concerning starting a support group?
This question was referred to the entire Diabetes Team, who have each given an answer:
Answer from Dr. O'Brien:The first prerequisite for a group like this is to designate a 'volunteer' who will arrange for the meeting room, speaker progam and refreshments. Burn-out is the norm after about a year and you must be prepared to find alternates and even to have gaps in the program.
In general it seems to be a good idea to have speakers on some relevant topic for about twenty minutes and to follow this with plenty of time for questions. Nurses, child health associates, nutritionists or social workers are often better at this than M.D's. A variation that some people like and if you have a big enough group is once in a while to have a 'consumer panel.'
Answer from Dr. Lebinger:I have also found burn-out to be common. It is mainly the fairly newly diagnosed patients/families who want to come. I have found that it is important to have a prossional involved, otherwise the group can be dominated by one or a few individuals not representative of the group.
In my office we try to have one to two meetings a year centered around a specific topic with our nutritionist and psychologist present or leading the discusion. We have gone to local supermarkets on supermarket tours to compare foods (nutritional value and taste), we have discussed products, research, treament options, and walked and ridden bicycles as a Team to raise money for the local ADA chapter. Usually the turnout is different depending on the event and who is interested.
Answer from Dr. Robertson:The only twopence worth that I would add to this discussion is that once such support groups are set up, they should be run by a panel of interested parents/patients with only support necessary from the professionals. This seems to me to be the only way to avoid total burnout.
Answer from Stephanie Schwartz:The American Diabetes Association has a book about starting Support Groups.
There's also an article (Support Groups Come of Age; Diabetes Interview Offers a Do-It-Yourself Guide) in the October 1996 edition of Diabetes Interview (now Diabetes Health, ed.) (paper version; the article is not on the Internet)
Answer from Dr. Quick:Definitely, talk with your local American Diabetes Association and Juvenile Diabetes Research Foundation offices. Their staff should be aware of any existing nearby support groups, and they should have information on how to start a new group.
It's very hard to keep the listings of support groups current.
Original posting 25 Sep 96
Updated January 16, 2006
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