What is an online support group and how do I find the best one for me?

Michael Adam Reale By Michael Adam Reale, 12th Dec 2014 | Follow this author | RSS Feed
Posted in Wikinut>Health>Recovery & Coping

Tips on what to look for in a good online support group

What is the difference between a support group and an online community?

“The Definition of a Support Group: Support Group – A support group is a group of people who support each other over a problem they all share. The Definition of an Online Community: Online Community – A group of people online who share a common interest. Wow, both of those definitions sound very similar, don’t they? An online community and support group is on the same type of idea. They have a common ground, a common interest. And, the group builds from there. Because of this, it makes sense that support groups would work online…. that they not only work, but they thrive.” - Quoted from: Using Social Media by Shana Albert which appeared on Collective Thoughts: Social Media Thinking.

Finding out about existing online groups

As reflected in the group descriptions that are provided in the SourceBook Online, all the established national and international self-help group organizations have developed their own websites. Many of these sites provide interactive message boards or e-mail discussion groups, chat rooms, and links to other helpful sites that deal with their particular issue. So the websites of the face-to-face self-help groups would be one good place to start to check for an online discussion group. If the national self-help organization doesn't have a message board or an e-mail discussion group displayed at their website, send them an e-mail, asking if they know of any good online groups that exist.

You can also begin with a search at your favorite search engine such as Google.com, Bing.com, WebCrawler.com or a host of other search engines. EBiz|MBA has an article on Search Engines that lists many and helps you, the end user, to determine which best suites your needs. Today, most search engines are better equipped to “Sherlock” out what people are looking for. Search engines send out “spiders” to crawl the web in search of key-words or phrases that match your criteria. To enhance your searching experience feel free to use multiple search engines. Be sure to use words such as "support group" or "support network" in your search.

A second valuable resource is the Open Directory Project which can be similarly searched. You will find supports groups under "Health," "Health Mental Health," and "Society." They also break out website by language.
For mental health groups there is PsychCentral.com for a comprehensive listing by subject.

For specific cancer groups, the Association of Cancer Online Resources (ACOR) which is a non-profit patient/family-run organization that has over 130 e-mail discussion groups related to different forms of cancer and non-malignant tumors, both for patients and many for caregivers. They also help those seeking to start and run a needed new online support group for any type of cancer or tumor disorder for which there is no existing online group.

For older adults, SeniorNet provides older adults with access to and education about computers. They also have discussions and chat rooms on dozens of different topics of interest to older adults.

For health, emotional and general support issues, the larger sites have different issue boards/forums. Consider checking:

DailyStrength.org - Medical and emotional support community - physical health, mental health, support groups.

DelphiForums.com - Online support community that has support groups, forums, chat and more.

ExperienceProject.com - Online support groups for many issues and life experiences.

Meetup.com - General. Used to plan offline (face-to-face) meetings for people interested in a variety of support groups and other activities.

SupportGroups.com - Online community of persons interested in forming support groups within this networking site.

ToolstoLife.com - Online. Support groups and group bonding with peers, friends and role models.

Tribe.Net - Online support community that has many categories. A place to connect with others “to find your community on Tribe”.

What to look for in an online support group | community?

The quality of online groups differ widely, more than face-to-face support groups. Whether you are looking at an existing online group, or thinking of starting one of your own, here are some of the characteristics of a good online support group that you can either look for, or work to develop. Online Support Groups should be easy to navigate and user friendly. They should also appear clean and bright. They should not be confusing to individuals.

The first indicator is to see if it's alive, i.e., utilized and vibrant. It's easy for anyone to hang out a shingle saying that there is an online support group, when in fact there is little or no activity. So look for a fair number of people and recent postings. Just as in a community group, the life of an online group depends on the continued participation of people who have found it helpful. A good number of participants also help to correct misinformation. But take into account that with rare disorders and concerns, the membership and message volume will often be naturally low.

There should also be clear guidelines on how to use the support group. Rules for support groups are made so that everyone can feel comfortable and welcomed. Those rules and guidelines should be easy to find and follow.

Message boards, forums, tweets and chats are the way in which members communicate with one another by giving and receiving support and comfort to one another. Message volume alone doesn't indicate quality. So, look to see if people are actually helping one another? Beware of "pity party" discussion groups, where people mostly complain, but there's "no recovery" to be found. Are questions and requests for help answered by different members, who share their positive experiences, strengths and hopes? Or is just one person doing all the helping? Look for the multiple ideas and collective wisdom of a "support group," not just a "support person."

Is the environment non-judgmental and caring? In viewing the messages, does it feel like a safe and welcoming place? Look for tolerance of different opinions and feelings, as well as ground rules that prohibit negative behavior like "flaming" (the use of abusive language used to demean a person or their idea).

It is safer and helpful to have a non-judgmental moderator on hand. Moderators should be monitoring the forums to be sure that the rules are followed. Online support groups should also offer you the resources you need to help you find a local face-to-face support group and a doctor if need be.

After you have had an opportunity to view messages and participate, do you feel a sense of community? Online support groups, run by and for people who share the same experience, provide an understanding ear that no one else in the world can provide. Newcomers often report that they feel an also instant sense of belonging. This is one reason that many people stay active in the group, helping others, after being helped. For some groups, professionals may also be available at online group sites as helpful resource people (online it's not unusual to see them as "guest speakers" for a full week). But it is important that they not dominate or take over the support group.
There should be links to important information and Websites because you need to understand the issues you are having, why you are having them, what are the symptoms, when will they go away, etc. Good Support Groups and Communities should have plenty of information for you at your fingertips. Or, at least point you in the right direction.

Support groups are non-proprietary. Therefore, be sure that the online group has no explicit or hidden agenda of selling products or services. Some support groups may use a free online service that has general ads, e.g., Yahoo e-mail groups, which is normal and to be expected. But be beware of any groups or online sites that encourage purchases, especially of a quick-cure product.

Ultimately, the key to a good online support group is whether it meets your needs. There are a variety of groups available that have different values and personalities. A good group should match your needs and values.

Online networks provide individuals worldwide with the peer support, understanding, and information they seek. Some online groups also do a good job in promoting needed and timely advocacy efforts. The Internet overcomes barriers of distance, time, and disability. Overall, the Internet will continue to help expand mutual help networks to better meet people's needs and improve the overall quality of our lives.

Note: Please keep in mind that online support should not take the place of medical attention that you should receive from a doctor or professional.

Tags

Forum Blog, Forum Content, Forum For Counselling, Forum Groups, Forum Posting, Forums, Self-Help, Support Group

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author avatar Michael Adam Reale
Issues of social justice and advocacy are very important to me.

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