Excerpt of the presentation

Internet health support groups: their uses, formats, benefits, risks, falicitation, and research approaches

Elizabeth Ann Pector
Spectrum Family Medicine, Naperville, United States

Objectives: This review was conducted to determine the extent of participation in Internet support groups, to describe support group structure, to document benefits and risks of participation in online groups, to identify important considerations for moderators and researchers in online support groups, and to find resources for both users and moderators.

Study design: A comprehensive review was undertaken via literature and web search. Methods: Literature search was conducted on Medline for publication dates 1996 to 2003, and on Psycinfo for publication dates between 1992 and 2002, using the keywords ?support, self-help, Internet, online, group, efficacy, outcome.? A supplemental Internet search using Google was performed to identify sites that addressed online support groups.

Results: Computer-mediated-communication (CMC) self-help groups are used by 9 to 46% of patients who access the Internet in search of health information. Anyone with a computer and Internet access can find continuous support in one of thousands of groups. Internet support is valuable for patients with rare, disabling, or stigmatizing disorders, and for caregivers whose responsibilities prevent meeting attendance. Debilitating yet poorly understood disorders such as multiple sclerosis or chronic fatigue are popular topics for online support. Men and women, ethnic minorities, senior citizens, and low-income users have all received benefit. Men may use CMC support more than FTF support. Technological and disability barriers can be overcome. Computer-mediated-communication (CMC) groups exist in many formats. A group?s software structure influences the style of participants? interaction, group cohesiveness, and the degree of empathy expressed. Synchronous group formats include Multi-User Domains, chat, email focus groups, web telephony and Internet videoconferencing. Asynchronous group formats range from patient-to-patient email to comprehensive multimodality patient education and communication sites. Stand-alone message boards, newsgroups, and listservs are popular.

Hospitals may provide a significant benefit to frequently admitted patients and their caregivers via access to online support. Several authors have described features that enhance functionality and utility of support networks. Group structure needs to be compatible with computer hardware and software available to most users, and must take into account users? linguistic and computer literacy and limitations related to their health, age or other factors. Introductory training in keyboarding, computer use and research skills may help some populations. When interactive support is part of a comprehensive system, other components such as health information databases, FAQs, restricted-access biographical statements about members, and ?ask-the-expert? modules can be included. These provide important background to newcomers while preventing repeated group discussions of basic material. Separate areas within a website can be considered for crisis and for day-to-day messages. Message analysis reveals consistent themes of support, information exchange, sharing of experiences, advice, empathy, catharsis, and advocacy. Empathy and a sense of community are successfully achieved online. Tone varies from factual to emotional. Several aspects of CMC groups are unique when compared to FTF groups.

Anonymity filters nonverbal cues, including personal characteristics that might disturb others. It also facilitates discussion of sensitive topics and leads to rapid disclosure of intimate details. Writing has long-term health benefits for chronic illnesses, and group participants feel they benefit from reflecting on word choice as they write their stories. Lurking occurs in 75-95% of some groups. Those who do not post regularly still feel they learn valuable information. Some may lurk to familiarize themselves with group culture before writing. Asynchronous discussions frustrate some participants. Subjective and objective benefit has been reported. Participants benefit from group cohesiveness and empathy that decrease the sense of isolation caused by the disorder. Stress is reduced by a perceived increase in social support. Patients with AIDS, breast cancer, chronic back pain, and diabetes mellitus have enjoyed documented improvement in their physical or mental health. Patients may feel empowered through online groups. Added benefits accrue when CMC support is combined with FTF groups.

There are significant risks to online group participation, including delayed interactions, misinformation, arguments, loss of privacy, online stalking, and deception. Patients with suicidality, refusal to get better, or anxiety, psychotic, borderline, factitious, and obsessive-compulsive disorders may not be appropriate for online groups. Dishonesty is more likely in MUDs, newsgroups and chat rooms. Group members sometimes resent the heavy time and e-mail burden of online groups. Many are frustrated by the lack of physical contact with other members. Adverse psychological effects may ensue from online group use, such as Internet addiction, depression, social withdrawal, and loneliness. Recent work suggests that extroverts tend to use the Internet to extend their social networks, while people with deficient real-world social networks, and teens, may become more isolated. Knowledge of group psychodynamics, and specific training in online therapeutic techniques, may be invaluable for online group facilitators. While not well studied, the behavior of informal leaders online appears similar to that of trained facilitators.

Moderators oversee membership and technical matters, monitor appropriateness of posts, correct misinformation, facilitate therapeutic process, and mediate disputes. Many directories list existing groups, and instructions are available for those who wish to start new communities. Clinicians and website operators are often approached via the Internet for advice, and their practices in responding to these unsolicited requests vary. Liability and ethical concerns exist for clinical and mental health professionals who respond to queries, sponsor websites or moderate online groups. Many research methods have been used to study online groups. Experimental trials have assessed health or psychological outcomes from group use. CMC support has been experimentally compared to FTF support. Through covert observation, factors such as user demographics, number of members joining or leaving, time of use, message analysis, and social network analysis have been analyzed without disrupting naturalistic discourse by disclosing the investigator?s presence. Guidelines concerning ethics, confidentiality, and methodology have been developed for researchers who wish to study online groups.

Conclusions: Internet health support groups offer participants many benefits, with accompanying risks. To preserve privacy and enhance empathy, the author recommends closed, private, moderated listserv groups. Website developers and group moderators must consider user demographics, ease of use, confidentiality, group therapeutic process, and the balance of participant benefit and researcher needs when constructing and maintaining Internet support communities.