Electronic support groups

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Support groups have long been popular with people experiencing serious or chronic illness. However, lack of transportation, ill health, schedule conflicts, and other factors prevent some people from participating in a support group. Electronic mailing lists (e-lists) and bulletin boards offer expanded opportunities for patients and their family and friends to participate in support groups. In May 2006 acor.org, the Web site of the Association of Cancer Online Resources, hosted more than 140 support groups and mailing lists for cancer and other patients and patient advocates.Yahoo.com hosted approximately 32,500 health and wellness support groups.


Electronic cancer support group users surveyed in 2004 reported several reasons for joining ACOR support groups. Users joined the lists to obtain information about managing cancer, receive support from other list members, offer support to others, and gain ideas for coping with cancer, among others.(1)

As with most content published on the Internet, there is some question about the accuracy of the information provided through electronic support groups, particularly because most participants are patients or caregivers rather than licensed medical care providers. A 1999 investigation of an electronic forum used by patients with epilepsy reported that 6% of posts were inaccurate.(2) In 2006, however, an analysis of 4,600 posts to a breast cancer support list found 10 messages containing inaccurate information; 7 of the 10 inaccurate posts were corrected within 10 hours, suggesting that the quality of information distributed within an electronic support group is relatively good.(3) The increasing availability of correct, high-quality, consumer-friendly information through such agencies as the U.S. National Institutes of Health and MedlinePlus has likely made it easier for electronic support group participants to locate and post accurate information.


Members of electronic support groups fill different roles within the group. A year-long study of an Australian electronic breast cancer support group study reported that 94% of the 31 members wrote fewer than 10 messages.(4) Two members accounted for 17 and 23 messages each, and content analysis of the messages indicated that the two members functioned as “volunteer emotion workers,” providing support to less verbal group members. Interviews with the high-frequency members suggested that they were motivated by a desire to help others.

Electronic support group users have reported generally positive experiences with such groups. More than three-quarters of the members of Women to Women, a support group for rural Montana women with a variety of chronic health conditions, reported that the conversation facilitated by the e-group was “extremely important” or “very important” to them.(5) Members of a breast carcinoma support group reported a similar reaction, with 67% noting that they found the group helpful.(6)


Age has little effect on users’ perception of the value of electronic support groups. Teenage members of an online group for youth with cystic fibrosis (CF) showed no change in their knowledge of CF despite exposure to educational materials within the program, but showed a significant increase in their perception of support from other teens.(7) Among older adults living in congregate housing and nursing facilities, depression and loneliness decreased after training and five months’ access to the Internet.(8) Although the study was intended to investigate overall mental health rather than response to electronic group involvement, it does refute the position that older adults cannot use computers for interpersonal communication and connection in the same way as young and middle-aged persons.

Nonetheless, some researchers question whether participation confers tangible benefits. A 2004 analysis of 6 journal articles about peer-to-peer electronic communities indicated that most studies showed no effect of support groups on measures of emotional status (e.g., depression and sense of social support).(9) There was also no evidence of harm resulting from participation in electronic support groups. The authors noted that a lack of published research focused specifically on electronic peer groups rather than groups in association with other interventions makes it difficult to assess the effects of groups.

It has been suggested that electronic support groups offer more than just disease information and support. The persistence of individual electronic support lists, in some cases for a decade or more, attests to their value to users.(10) Patients who establish connections with others in similar circumstances experience less isolation and may find it easier to cope with health challenges.


  1. Rimer BK, Lyons EJ, Ribisi KM, Bowling JM, Golin CE, Forlenza MJ, Meier A. How new subscribers use cancer-related online mailing lists. J Medical Internet Research 2005;7(3):e32. Accessed online 5/19/06 at http://www.jmir.org/2005/3/e32/.
  2. Hoch DB, Norris D, Lester JE, Marcus AD. Information exchange in an epilepsy forum on the World Wide Web. Seizure 1999;8:30-4.
  3. Esquivel A, Meric-Bernstam F, Bernstam EV. Accuracy and self correction of information received from an internet breast cancer list: analysis of posting content. BMJ 2006;332:939-42. Accessed online 5/24/06 at http://bmj.bmjjournals.com/cgi/rapidpdf/bmj.38753.524201.7Cv1.
  4. Winefield HR. Support provision and emotional work in an Internet support group for cancer patients. Patient Education and Counseling In press.
  5. Hill WG, Weinert C. An evaluation of an online intervention to provide social support and health education. CIN: Computers, Informatics, Nursing 2004;22(5):282-8.
  6. Lieberman MA, Golant M, Giese-Davis J, Winzlenberg A, Benjamin H, Humphreys K, Kronenwetter C, Russo S, Spiegel D. 2003 Cancer 2003;97(4):920-5.
  7. Johnson KB, Ravert RD, Everton A. Hopkins teen central: assessment of an Internet-based support system for children with cystic fibrosis. Pediatrics 2001;107(2) Accessed online 5/19/06 at www.pediatrics.org/cgi/content/full/107/2/e24.
  8. White H, McConnell E, Clipp E, Branch LG, Sloane R, Pieper C, Box TL. A randomized controlled trial of the psychosocial impact of providing internet training and access to older adults. Aging Ment Health. 2002 Aug;6(3):213-21.
  9. Eysenbach G, Powell J, Englesakis M, Rizo C, Stern A. Health related virtual communities and electronic support groups: systematic review of the effects of online peer to peer interactions. BMJ 2004;328:1166-71. Accessed online 5/19/06 at http://bmj.bmjjournals.com/cgi/reprint/328/7449/1166.
  10. Jadad AR, Enkin MW, Glouberman S, Groff P, Stern A. Are virtual communities good for our health? BMJ 2006;332:925-6. Accessed online 5/19/06 at http://bmj.bmjjournals.com/cgi/reprint/332/7547/925.

Submitted 24 May 2006 by Carolyn Petersen