|
An online support group can be a lifeline for those providing care for a family member or friend. Individuals meet together on the web—without leaving home—to talk about a common disease or condition with caregiving peers who often have some of the best advice and deepest understanding of the caregiver journey.
At its best, an online group is a comfortable place to express concerns, share strategies and connect with others in a similar situation. Here are a few tips to consider before joining an online support group:
-
Who sponsors the group? A health or social service provider you trust may offer an online group as a free service. Look for the groups on their website. (Some support groups may use a free online service that has ads, e.g., Yahoo!® e-mail groups, which is normal and to be expected.) If you get a sense that the group has an explicit or hidden agenda of selling products or services, look elsewhere.
-
Do you prefer a group that is moderated, self-governed or somewhere in between? A moderated group has a designated person(s) whose job is to ensure a safe, supportive and welcoming environment. Moderators enforce group rules, including screening for those allowed to join the group, and also weed out unsolicited research and commercial pitches. A self-governed group tends to be less structured, allowing for a broad range of topics and ideas to be discussed.
-
Read the group postings before deciding if you want to join in. This is a great way to see if the group is active and vibrant. The quality of the posts is often more important than the number of individual messages. Reading but not writing, also known as “lurking,” can be a way to gauge if caregivers in the group are talking about issues that are relevant to your caregiving situation. When you scan messages check to see if members are supportive and if they make new members feel welcome.
When you join a group, become familiar with basic rules of online writing etiquette. A few common ones are:
-
Don’t use all CAPS (it’s the same as shouting).
-
If you use “reply” change the subject line to match what you are writing about.
-
Write to the group using text only, saving pictures and symbols for nongroup messages.
-
"Flaming” (insulting people) is not allowed.
-
Consider the source of posted information. Medical treatments and discoveries posted by others may not be effective or safe for your situation. Be sure to check out those that interest you with a reliable source.
-
Carefully consider your message before sending. Using the delete key is often a better response than an angry retort to a message that upsets you. If it’s just too much to let it pass, draft your note and don’t send it for a day. You might feel differently—or not—after some time has passed. Once a message is sent you can’t get it back, and if the group messages are archived that message could live on for others to read for years.
-
Think twice before posting from your work computer. An employer may be legally entitled to monitor your transmissions and computer activity.
Most online caregiver support groups are offered in an e-mail “listserv” format. Family caregivers send and receive e-mail messages or post to a central online bulletin board to take part in the discussion. This format allows for longer and more thoughtful messages and greater expression of emotion than what you would find in a typical realtime “chat” group. A listserv offers you the choice to receive your posts all together, in one delivery each day, a “digest,” or to receive them one-by-one, as they get posted.
You’ll find that an online membership group is either “open” or “closed”. For example FCA’s caregiver discussion group on www.caregiver.org is “open,” meaning it’s available to any caregiver locally, nationally or internationally who has internet access and wants to connect with others who care for an adult family member or friend. By comparison, the California Caregiver Resource Centers’ Link2Care discussion group is “closed.” This means that only caregivers who are served by a California Caregiver Resource Center and are caring for a loved one with some form of dementia are allowed to join.
FCA offers four online groups: the general caregiving group; a group for individuals and families affected by Huntington’s disease, Parkinson’s disease and other movement disorders; a group for the LGBT community (see article, LGBT Online Support Group), and a group for clients of the CRCs throughout California. Go to www.caregiver.org. All FCA groups are free of charge.
Today’s affordable computer technology and expanded Internet use has made online support groups a viable option for many family caregivers. Some choose to join an online group in addition to the in-person group they attend. The choice to try an online discussion group is yours. It’s fun, easy and available 24 hours a day, seven days a week.
For more information see related articles in this issue of Update, LGBT Online Support Group and A Personal View.
E-mail to a Friend
Printable Version
|
