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Summary

Online support groups are convenient and easy to join.  It may also be easier to find an online support group of people who are like you in addition to having the same disease you do.

Research suggests that online support groups can be as beneficial as in person support groups. 

If you join, you can be anonymous. Still, reasonable precautions are in order.

Standard advice is to give an online support group a two week trial period because it takes time to get used to participating in a support group, to get a real understanding of what the group discusses, and to get used to a written conversation. Also keep in mind that according to Mitch Golant, Senior Vice President of research and training at the Cancer Support Community: "Online, the way you connect is by self-disclosure. Just by talking about yoruself and sharing and having others listen has a tremendous impace on your quality of life."

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Internet Support Groups Compared To In Person Support Groups

Since a support group that meets on the internet doesn't have the same personal contact as an in-person support group, or even one that meets on the telephone, it has been questioned whether such a group is as effective as one of the other types. A 2002 study by The Cancer Support Community (www.thewellnesscommunity.org offsite link) indicates that online support groups can be as beneficial as in person support groups. The study found that breast cancer patients who participated in 16 weeks of professional facilitated online support groups experienced significant decreases in depression and negative reaction to pain, and significant increases in zest for life and spirituality.

In fact, internet support groups have certain advantages over in person support groups.

  • You can meet people with a similar condition who are in a similar situation no matter where you and they are located.
  • You don't have to wait for the next meeting to raise a concern or ask for advice.
  • You can pick up the threat of an ongoing discussion anytime it suits you.
  • You can be anonymous.
  • It may be the preferred method for people who prefer to share their thoughts in writing.
  • You don't have to leave home.
  • It works for people who are uncomfortable with an in-person setting.

Disadvantages of internet support groups include:

  • If you belong to a posting web site, you may post vulnerable emotional information and have no reply.
  • It is easy for group members to drop in and out.
  • It can be easy to be misunderstood without the benefit of body language, facial expression and intonation.

How Internet Support Groups Work

Generally, online participation in a support group is free.

Internet support groups  can be accessed through any computer system.

Inernet support groups can be conducted in several different ways:

  • A "bulletin board" format on which people write posts with thoughts, questions or informaiton to which other people respond. Bulletin board format groups can be accessed at any time, 24/7, from any place - even while you are traveling.
  • Chat rooms where people can "chat" over the internet by typing their thoughts and/or questions in real-time either during a set time or with a posting.
  • e mail discussion groups (known as "listservs") where the discussion is by e mail.

You generally must register and get a password before joining an online support group.

Only other members and the moderator who leads the group can access your entries.

Members are often permitted to share poems, photographs or anything else they can scan. Scanning devices are inexpensive.

What To Do Before You Join An Online Support Group

Before joining an online support group, it is advisable to do the following:

  • Look for a group that is the right fit for you, including the following:
    • The make-up of the group
    • The amount of time you are expected to give to participating in the group. 
    • Look at both structured groups and social networking sites
  • Make sure the site is trustworthy.
    • Look for password-protection and a requirement that you register before joining a group.
    • Learn who the sponsors are so you can make sure that the sponsor is reputable.
  • Check to see if the site has a monitor for the discussion. 
    • It is preferable that a group have a professional moderator to help keep the discussion on track as well as to add insights and experience to the conversation.   
    • Non professionally led groups can also be beneficial. A study published in January 2012 in the journal CIN: Computers, Informatics, Nursing found that the important thing was belonging to a support group, no matter how it was led.
  • If the group does not have a monitor, check for posts on threads that have no replies to help avoid the feeling of exposing your thoughts and feelings, and then have no one respond.
  • Exercise caution regarding your personal information. For instance, while having a financial crunch may be relevant, more specific information such as the identity or amount of your assets is not. Likewise, information such as your home address is not relevant. (For information about dealing with a financial crunch, click here.)
  • Keep in mind that people may lie about who they are.
  • If someone tries to sell you something, be very wary.

How To Find Online Support Groups

There are a variety of ways to find an online support group. No one method is better than another. Keep trying until you find a group that works for you. 

ALL GROUPS OTHER THAN CANCER

  • Type the name of your disease and "online support group" into your favorite search engine
  • Contact national nonprofit organizations that provide information and support to patients and caregivers
  • Ask a mental health therapist who specializes in helping people with your disease or life challenging diseases in general
  • Ask a social worker at a large nearby hospital

CANCER

Following are some of the reputable online websites that provide online support for people with cancer: