Family support groups provide safe spaces for families who have children with disabilities or other special health care needs to connect and share information and resources. This fact sheet gives some direction to parents, grandparents or other caregivers who want to start a virtual support group.

While face-to-face support groups have benefits, many groups find virtual support groups to be more convenient and practical.

However, a virtual format may have risks, or possible downsides. It is important to weigh each of these factors before starting, or joining, an online support group.

Benefits of Virtual Groups

• • • More frequent and flexible participation because no travel is needed,
    • Connects families who may not have a local support group nearby,
    • Connects families who have children with rare conditions or diagnoses, or other shared identities or experiences,
    • Provides a level of privacy or anonymity, which some parents or families may find more comfortable.

Risks of Virtual Groups¹ 

• • • Members may have trouble connecting with others they haven’t met in person. This can be especially true for groups that use only audio or text formats because they don’t have the benefit of seeing one another’s reactions or body language,
    • Anonymity may provide some members space to voice inappropriate or disrespectful comments or behaviors,
    • Members may use the online environment as a platform to scam, spoof or take advantage of others,
    • Virtual or text conversations can lead to misunderstandings or confusion among group members.

¹Mayo Clinic, mayoclinic.org/healthy-lifestyle/stress-management/in-depth/support-groups/art-20044655

Want to Learn More?

Check out these resources to learn more about Virtual Support Groups:

• managementhelp.org/groups/support/select-technologies.htm
• mayoclinic.org/healthy-lifestyle/stress-management/in-depth/support-groups/art-20044655
• wisconsincaregiver.org/virtual-events-for-caregivers

Overcoming Barriers to Virtual Groups

Even though there are risks to forming a virtual support group, thoughtful planning before the first meeting, and periodically revisiting these, is the best way to ensure success.

1st: Establish Ground Rules                                                                                                                                                  

Like in-person support groups, it’s important that your group’s members understand the rules to maintain a healthy group. Some examples of rules to think about include:

• • • Information shared at the meetings must be kept confidential unless what is shared is putting someone in danger.
    • Member’s private information should not be shared unless that person has given permission.
    • Members must treat every participant with respect.
    • Allow members to share personal information in a caring environment by avoiding judgments or disrespect.

2nd: Each meeting needs a Facilitator or Group Leader

Make sure that the attendees know who the meeting facilitator is. The facilitator’s job includes:

• • • Reminding members about the ground rules.
    • Putting an end to any inappropriate or misleading information.
    • Encouraging a healthy dialogue by not allowing one member to take over the discussion.
    • Getting the group back on topic if the conversation turns negative or there’s complaining.

Choosing the Right Technology for Your Virtual Support Group

There are many options available for hosting virtual support groups and they’re getting easier to use and more accessible all the time. You can try one format and then re-evaluate and try another to see what works best for your group members. Often, a member who is familiar with one platform can teach others who may not be as comfortable with the technology.

Live Video Meetings                                                                                                                                                              

Meet live at a date and time decided by the group using applications like Zoom, Google Meet, Facetime or What’s App. Setting up an account on most of these is free, or low cost. And, if your group has a sponsor like a school, clinic or hospital, that organization likely has video conferencing capabilities available for you to use.

Phone Only Meetings

Your group might prefer to use audio only if bandwidth is a problem. There are telephone conferencing options like FreeConferenceCall.com. Keep in mind that an audio-only group provides more privacy and anonymity, but it may lack the opportunity for members to make personal connections.

Online Only                                                                                                                                                                        

Support groups can be held in an online format using chat rooms like Google Hangout or Yahoo Messenger. Setting up an email list, like a Google Group is another way to have online chats. This format allows members to share ideas and resources at any time.

Using Social Media

Your group can set up a private group on a site like Facebook. This type of virtual group also lets members communicate any day or at any time. If you chose social media, you may also want to add email lists and/or live meetings to bridge the conversation between meetings.

INFORMATION AND RESOURCES

Wisconsin Wayfinder: Children’s Resource Network, 877-WiscWay (877-947-2929):  Wisconsin Wayfinder offers families one name and phone number to find services for children with special health care needs. Wayfinder connects you to a resource guide at one of the five Children’s Resource Centers in your area.