Internet Support for Mood Disorders
These sites recently got a decent enough review, with all the usual reservations...
Online Empathy for Mood
Disorders: Patients Turn to Internet Support Groups
Lynne Lamberg. JAMA. 2003;289:3073-3077.
Walkers in Darkness
A nonprofit support organization for individuals with mood disorders with a very large and active email list and Internet Support Group (ISG).
American Self-Help Clearinghouse (ASHC)
The ASHC helps consumers find or form community and online groups for a wide range of illnesses, addictions, disabilities, and other problems.
Depression and Bipolar
Offers forums for individuals with depression or bipolar disorder, for family and friends of individuals with those disorders, and for those interested in state and national advocacy, and even offers teams of trained facilitators.
Offers e-mail list called KnowHow for NAMI consumer members and is launching new intenet support groups (ISGs) for individuals with major depression, bipolar disorder, anxiety disorders, and other chronic mental illnesses, and ISGs for spouses, families, children, and parents of individuals with such illnesses, and includes facilitators.
The Depression and Related Affective Disorders Association (DRADA)
Offers a peer-support program
that links individuals with depression or family members who wish to e-mail,
write, or talk with others with similar concerns, using trained leaders in for
community support groups for individuals and their families, mainly in
About network's Depression Site
Offers chat rooms and forums with moderaters who lead discussions, suggest resources, etc.
A large health information portal that offers an online administered Center for Epidemiologic Studies Depression Scale that produces general recommendations
Online Empathy for Mood Disorders
Patients Turn to Internet Support Groups
Some of the 20 million individuals in the
The relative anonymity of the Internet helps protect their privacy, allowing them to air questions and concerns openly. At the same time, the round-the-clock nature of ISGs facilitates participation, by permitting users to read and post messages when they like. This 24/7 availability is a particular boon for individuals who live in areas without community support services (or who find that community groups meet at inconvenient times or locations), as well as individuals who lack transportation or have physical disabilities that limit their mobility.
At many mood disorders' Web sites, visitors can participate in real-time chats, sometimes around the clock. Users "talk" by typing short notes. Off-the-cuff comments, although seemingly mundane, mimic ordinary conversation and provide social glue that bonds participants. "People don't feel so alone when they can come to a Web site like ours at 3 AM and talk with 25 other people who also experience mental illness," said Mark Oberg, president and chief executive of Walkers in Darkness Inc, a nonprofit organization that that started in 1991 for individuals with mood disorders.
According to Oberg, the group's Web site, http://www.walkers.org, logs nearly 500 000 visits annually. Oberg, who has bipolar disorder, formerly worked as a computer industry executive.
The group's six current e-mail lists reach 400 subscribers who post about 100 messages daily on living with mood disorders. Its 18 Web-based forums, with 2400 registered users, generate more than 200 messages a day. A few recent discussion threads: "All alone once again." "Depression meds." "New here, just diagnosed."
In this and other ISGs for individuals with mood disorders, members often post lengthy, thoughtful messages. They discuss the impact of their illness on daily life, relate experiences with clinicians and hospitals, enumerate benefits and drawbacks of medications and other treatments, review new research, and encourage others to seek help and stick with therapy. The ISG users often develop intimate, trusting relationships with group members they have never met in person. In times of crisis, some may send flowers or money to those in need.
A NEW AREA FOR STUDY
Just how helpful ISGs might be for patients with mood disorders is unknown. Despite more than a decade of ISG use by individuals with mood disorders, researchers are just starting to examine how these groups work, how they compare with face-to-face groups, how they affect symptoms, and how well they meet members' needs.
Researchers at Johns Hopkins University
School of Medicine,
Despite fears that individuals with mood
disorders might turn to ISGs in lieu of professional
help, 96 of the 103 study participants were in treatment for their depression,
At baseline, more than half said they had participated in ISG activities for 5 or more hours a week in the previous 2 weeks; researchers characterized these individuals as high users. Only 1 in 3 reported ever participating in a face-to-face support group. After 1 year, 43% of the high users and 21% of low users had experienced resolution of their depression. Most still participated in the ISG, as well as in face-to-face treatment. More high ISG users stayed in treatment than low users did.
Nearly all rated emotional support as ISGs' chief benefit. The groups allow individuals to discuss feelings they may not otherwise have the opportunity to explore, Ford said, if their prime mode of care is pharmacotherapy. The ISGs also prompted users to take a more active role in their own care, by encouraging them to ask their health care professional questions or seek a change in medications.
Some physicians have raised concerns that
individuals with mood disorders, who may have little social support to begin
with, will deepen their isolation by spending hours online. However, the
"That's not surprising in a 1 year period," Ford said, asserting, "ISGs won't realize their full promise until they teach members how to get more support from people around them."
LOOKING FOR SUPPORT
Finding the right ISG may take some exploration. Depression tops the list of ISGs most sought by visitors to the Web site of the American Self-Help Clearinghouse (ASHC), http://selfhelpgroups.org, says Edward Madara, MS, ASHC's director. The ASHC helps consumers find or form community and online groups for a wide range of illnesses, addictions, disabilities, and other problems.
In selecting ISGs for its database, Madara notes, ASCH looks for those with enough contributors to provide a variety of perspectives, experiences, resources, and practical tips. Questions and comments ideally prompt timely and pertinent responses. Members support one another, foster coping skills, and refrain from making judgments.
Some ISGs for individuals with mood disorders are peer-led. Others use a moderator or facilitator, often a person with the illness that is the group's focus. Some enlist a psychiatrist, psychologist, social worker, or nurse to answer treatment-related questions. However, that's not always a plus, because the professional may dominate discussions, says Madara.
Quality varies more in ISGs than in community groups, he says: "Anyone can hang a shingle in cyberspace." Some groups turn into a "pity party" in which complaints dominate the discussion. Sellers of products or services may try to exploit the vulnerable, posting "it worked for me" messages. Frequent or hostile posters can discourage others from contributing. Individuals with Münchausen disorder occasionally intrude (See "Faking It Is Easy Online"). Misinformation may not be as serious a problem as physicians fear, however; in a well-functioning group, members rapidly correct each other's errors.
A CHANGING PICTURE
Many ISGs for individuals with mood disorders represent the determined effort, at least initially, of only one person. Organizations, even those with a network of community support groups, Madara says, have been slower to establish an online presence, but that picture is changing.
The online forums of the Depression and Bipolar
Support Alliance (DBSA), drew 14 000 users in February 2003—a typical month,
says Lisa Goodale, LSW, DBSA's
constituency relations director (http://www.dbsalliance.org/). Users can
participate in forums for individuals with depression or bipolar disorder, for
family and friends of individuals with those disorders, and for those
interested in state and national advocacy. This month, the DBSA (which has more
than 1000 face-to-face support groups across the
The National Alliance for the Mentally Ill (NAMI) maintains an e-mail list called KnowHow for NAMI consumer members (http://www.nami.org). NAMI plans to launch a new Web site this month, and will offer Web-based ISGs for individuals with major depression, bipolar disorder, anxiety disorders, and other chronic mental illnesses. The site will include ISGs for spouses, families, children, and parents of individuals with such illnesses as well, reports Watt Hamlett, NAMI's senior Web developer. Facilitators will work with these groups, too.
The Depression and Related Affective
Disorders Association (DRADA) offers a peer-support program that links individuals
with depression or family members who wish to e-mail, write, or talk with
others with similar concerns, reports Wendy Resnick,
RN, MS, DRADA's director of support services
(http://www.drada.org). At any given time, she says, several hundred pairs
participate. DRADA has trained leaders for more than 90 community support
groups for individuals with depression and their families, mainly in
Large information sites such as Yahoo!, (http://www.yahoo.com), Topica (http://www.topica.com), and About (http://www.about.com) offer dozens of ISGs. Patients also can find depression message boards and chats at Internet service providers such as America Online (http://www.aol.com) and Microsoft Network (http://www.msn.com).
At About network's depression site (http://depression.about.com), for example, long-term site users moderate chat rooms and forums. They lead discussions, suggest resources, and protect the room from occasional disruptive posters, according to Nancy Schimelpfening, MS, a community health educator with depression who serves as overall section guide. "We get many postings about medications," Schimelpfening says, "but the main thing people are looking for is someone to lend them a sympathetic ear and help them get through the day."
Patients increasingly turn to the Internet to
make health care decisions,
Faking It Is Easy Online
While many approach Internet encounters in a
spirit of honesty, the anonymity of the medium can provide easy cover for
individuals with factitious disorders. Some desire attention or sympathy, while
others seek revenge or control over others. Marc Feldman, MD, a psychiatrist
Most of the 35 cases he has documented involve medical illnesses, with bogus reports of life-threatening crises, calls to 911, surgeries and other procedures, and miraculous recoveries. Individuals with MBI betray themselves by caricaturing genuine illness, often citing textbook lists of symptoms that may include depression as one of many.
One man joined an ISG for individuals with bipolar disorder, claiming to suffer profound depression. When group members suspected his ruse and challenged him, he threatened to kill himself. He later signed on, professing to be the allegedly dead man's son, and blamed the group for pushing his father to the edge. Some members of the group were so distressed, Feldman said in an interview, they actually became suicidal themselves.
"Outing" of a pretender may make some members of an ISG feel hurt and betrayed, and leave the group in disgust. At minimum, such deceptions divert the ISG's attention from its primary focus.
Individuals with MBI, when detected, may castigate the group, saying, "If you had been more supportive, I wouldn't have had to make up stories." Unfortunately, says Feldman, individuals with MBI can gain new audiences merely by clicking from one ISG to another (South Med J. 2000;93:669-672).—L.L.
Feeling Blue, Internet Users Go Online
About 1 in 5 Internet users in the
People with chronic diseases or disabilities,
and caregivers who live with a care recipient search more for mental health
information than other Internet users do. These findings come from a Pew
Internet & American Life Project report, scheduled for release this month
at http://www.pewinternet.org/. The report draws on a nationwide telephone
survey conducted during November and December of 2002 of 2038 individuals in
Extrapolating from these results, Pew
researchers say 54% of Internet users, or about 63 million
At the MEDLINEplus consumer data base of the National Library of Medicine, http://www.medlineplus.gov, depression is the most viewed of 30 mental health topics and usually among the 20 most searched-for topics of the site's 600 health concerns, according to Naomi Miller, MLS, MEDLINEplus content manager.
Marketing data also show intense interest in depression. During January through March 2003, Internet users worldwide conducted more than 2.2 million searches for depression and 1.8 million searches for the 9 most-used drugs to treat it, according to comScore Networks, a global market research firm,http://www.comscore.com. The most-visited depression information site, the depression "condition center" at WebMD, http://webmd.com, drew more than 100 000 visitors, comScore reports.
By May 2003, more than 400 000 individuals had taken a 20-item depression screening questionnaire that Daniel Ford, MD, MPH, and colleagues at Johns Hopkins University School of Medicine first placed in 1999 on Aetna InteliHealth, a large health information portal (http://intelihealth.com/depressiontest). About 50% of test takers show a high likelihood of having major depression; they are urged to see their doctor. The researchers hope this confirmation will help persuade those who need help to get it.—L.L.