Q: I would love to create a support group for other parents and families affected by type 1 diabetes. How do I go about doing this?
A: Support groups are capable of filling a number of very different and important needs in the lives of families affected by type 1. They can be a place to socialize and make friends within the diabetes community, a chance to hear new perspectives about the disease, and a time to work through concerns about type 1 with the help of other people who have walked in the same shoes.
To start a support group of your own, a good first step is to check in with your local chapter of the JDRF (and/or your hospital, clinic or other diabetes organization) to let them know what you’re planning and to see what kinds of groups already exist in your area. Your chapter may be able to connect you with other group leaders for mentorship or provide other resources.
Next, decide what kind of group you want to start. In general, some groups function just like you expect a support group would, with members sharing their concerns and receiving feedback; other groups are purely social, with members meeting just to chat and mingle.
No matter what kind of group best fits your vision, part of your planning process should include getting in touch with a diabetes professional who can sit in on your support group. Whether it’s a diabetes educator, family counselor, or a pediatric endocrinologist, it’s important to have someone on hand who can answer specific questions about diabetes that members may have.
An exciting and fresh way to include a professional in a support group (and a great way to draw in new members), is to arrange your meetings by topic, with the diabetes professional serving as a guest speaker. Successful “theme nights” I’ve seen include presentations on school bullying and type 1, how to parent tweens and teens with diabetes, and how to choose a summer camp. You may find that different topics appeal to different populations of parents. To include everyone, you can still hold general support group meetings in between these special presentations.
Where should your support group take place? Hospitals, churches and synagogues, and public libraries are typically very welcoming to support groups, and usually offer space for free or for a very nominal fee. Depending on its size, your diabetes clinic could also have a meeting room for you to use. Or get creative and meet at a coffee shop during the less crowded off-hours, or even in your own home if you’re comfortable with that.
As for what to expect at your first meeting, do some advance work by asking your JDRF chapter to post your meeting on their social media channels and in upcoming newsletters. Likewise, ask your clinic to add your meeting to its public calendar. You can also get the word out by creating a page for the event on a social networking site. Of course, nothing beats a personal invitation, so call or email others in your local diabetes community to let them know what you have planned.
When it’s time to meet, just remember that your goal is quality over quantity. If only six people show up, but those six people are enriched by coming to the meeting, consider it a success. Also, know that it is not uncommon for numbers to drop off a bit between the first and second meetings. As much as you can, whenever new faces show up, ask for their contact email or ask if they would join your social networking page as a way to stay in touch. Don’t be afraid to follow up with members to ask them things like how often they want to meet, what kind of speakers they would like, and whether the meeting time is convenient for them.
Checking in occasionally is also a way to foster a greater of sense of community, which is the key ingredient of any support group built to last.
–Matthew Goldstein is the public outreach/advocacy manager for the New York City chapter of the JDRF.
How Other Parents Deal
“What I love the most about the support group I attend is that everyone involved is a parent of a child with diabetes — even the diabetes educator who sits in to answer questions. When you’re in a room filled with people who know exactly what you go through on a daily basis, it’s amazingly powerful and uplifting, even if you walk in feeling exhausted and overwhelmed. I try to never miss a meeting!”
–Joanne S., Orlando, Fla., mom of 8-year-old Eric
Disclaimer: The information in these articles is not intended as medical advice. Families should check with their healthcare professionals regarding individual care.