Creating a Social Support System for People with Diabetes
No one can deny the value of having a community to which you can turn and contribute. This community can be defined geographically, such as by what city or school district you live in; or by interests, like birdwatchers or fantasy football fans. And communities can be defined and made up of those who are living with certain medical conditions, like depression, MS, or diabetes.
I've been fortunate to have been directed to a great number of communities since my son was diagnosed with Type 1 a year ago. I've been luckier still to find Type 1 communities that cater to my local area, which is in the Northern Virginia suburbs right outside of Washington, DC. When you can talk to people either online or face to face who live in your area, and deal with your same school districts or medical providers, this is where there's much value in terms of specific tips and recommendations. If you don't belong to a group as of yet, you may want to consider adding such a group to your support network.
I am a part of two different groups that both have made my acclimation into the world of diabetes much easier. It's often been a relief to know that we are not the only family from "Mars" - i.e. dealing with Type 1 - and that there are others who have insights, similar experiences, and a willingness to share thoughts their thoughts and time with us. All make the world of diabetes a little less lonely, not only as parents, but also for our son.
The following details these two groups - one offline and one online -- and can serve as a guide as you explore support to groups to consider.
In-person support group
Our family belongs to Type 1 Friends, which is a face-to-face support group run by our group of local CDEs based out of Inova Health System. It is run by Karen Harriman, RN, CFNP, CDE and Grace Hoeymans, RN, MSN. The purpose of the group is for families of Type 1 children, along with their siblings, to build a network of support and resources, and is open to any and all families in the area whose lives have been touched by Type 1.
The group meets in space provided by Inova, with support provided by IFHC Child Life Specialists who help facilitate a separate meeting for children while the adults meet. Although the Inova Health System offers many of the resources to make this group happen -- like the space and some of the staff support -- the content and structure of the group is driven by the participants. The group regularly meets once a month, on a day and time pre-determined by the members.
Meetings are set up like a roundtable for parents and typically begin with introductions from each participant, which include where one lives locally and the age of one's Type 1. These introductions often facilitates people with children with similar ages to meet separately in another setting.
Each meeting usually will have one focal point, which can include a guest speaker. Type 1 Friends has been fortunate to have the ADA's Crystal Jackson speak on 504 plans and Ann Bartlett discuss what it's like to live with Type 1 for nearly forty years. Other topics include a panel on local and regional summer camps for Type 1s and dealing with tough hurdles while managing Type 1, such as the holidays or Halloween.
One of the parent members of the group, Connie Smith, has proactively created a web site for the group for communication. She recently undertook organizing and executing a retreat for families local to our area who are all dealing with a child with Type 1 Diabetes. The mission of the retreat was to foster a sense of belonging for children managing Type 1, their siblings and their parents. Some educational components, a la the Children With Diabetes conference, were included.
Online Discussion Group
Another great local resource I have is a Yahoo Group, which is an online discussion thread. The group, called the Capital Area Type 1 Diabetes Support (and is identified as nvadm1 online) has been created especially for families who have children with Type 1 Diabetes and are local to the Northern Virginia, the District of Columbia, or suburban Maryland area.
Members can post questions, comments or experiences to the group, and these are delivered to each group member via email. In return, any group member who would like to respond can do so via the email thread. Posts have covered everything from where to find an H1N1 vaccine locally, to navigating VA state requirements to apply for a driver's permit, from asking the group for recommendations on area endocrinologists, to looking for babysitters for a Type 1 child.
According to Nancy Sharma, who founded the group in 2003 after her son was diagnosed with Type 1 at the age of five, "Local is good. It provides a forum to arrange outside meetings among members who would like to meet, and members know that they can drive to see one another."
"Likewise, the online format is good; it provides real-time feedback and learning," Nancy adds. "Any learning is good learning. Management of type 1 diabetes is very personal and regimens followed vary with lifestyle and priorities. People in the group are respectful of different points of view. Rarely do discussions get at all inflammatory and when on occasion they do, someone on the list will remind others that there are reasons to have different opinions and that is fine. Only once over the nearly seven years of the group was there an advertisement posted. The group is full of people who care about the topic and each other. It's a community."
In addition, adhering to these membership specifications means that there are no outside voices or observers participating, like medical providers or drug/device company reps, who may skew the discussion threads. Participants therefore feel free to offer honest insight to caregivers, medical devices, and healthcare professionals. Too, a close monitoring of membership protects the group from spammers.
Nancy founded the group with ten other participants. "When we first started, I participated nearly every day, replying to almost every post. You need 50 to 60 people to reach critical mass," she says.
If you don't have an online discussion group in your area and would like to start one, one of the first places to go is to Yahoo or Google. Both offer online discussion group resources with numerous resources.
You can promote your group via your local endo, CDE, primary care physican, and local chapters of the JDRF and ADA.
Next Steps Online Or Off
If you'd like to first see if there is an online discuss group or face-to-face support group in your area, then check with your endo's office, with your local CDE, at the JDRF and even try doing an online search.
And, as mentioned above, you can start your own, with your own specifications and make it as big - or small - as you want.