Health related virtual communities and electronic support groups: systematic review of the effects of online peer to peer interactions

Methodology, Validity, and Applicability: A Critique on Eysenbach et al.

17 May 2004

We commend Eysenbach and his associates for their intensive investment in searching, collecting, screening, and investigating studies on Internet peer-to-peer support groups. These online communities have become a common source of emotional support for millions of people in distress. The authors' exhaustive search and careful analysis have been badly needed, and warrant appreciation from the scientific and clinical community.

In some ways we are troubled, however, by the rigorous and unwarranted inclusion criteria used by these authors. For their analysis, Eysenbach et al. made a careful attempt to include only well-designed research studies that utilized specific experimental methodology. This approach, in their view, enabled valid assessment of the sole, incremental effects of peer-to-peer support. In our view, the authors have isolated online support intervention effects from reality. Emotional support is not provided in a vacuum. Online support—by all common theories, methods, and applications—is most commonly offered to people as an adjunct to other available resources. Actually, supported by empirical research, a combination of online support and the use of other help resources is considered most desirable (e.g., Cummings, Sproull, & Kiesler, 2002). We strongly believe that online emotional support may be an effective means of relief, but not as an isolated remedy. Although full control of variables is commonplace among experimental psychologists (for good methodological reasons in executing pure experimental designs), it is far less important in research that seeks to investigate the psychosocial effects upon real people in distress in their natural social environment.

Secondly, although clinicians and scientists strive at obtaining reliable evidence, we question whether certain types of quantitative research on Internet peer support groups are desired, needed, or even possible. Eysenbach and associates wrote: "Given the abundance of unmoderated peer to peer groups on the internet, research is required to evaluate under which conditions and for whom electronic support groups are effective… (p.1166).” However, as we see it, research of online peer-to- peer support groups by professionals is rather paternalistic, and it completely misses the point that the Internet environment is viewed by its users as a self-empowering medium. Users do not necessarily want, or need, professional researchers present in peer-to-peer support groups, which are run by ordinary people for ordinary people. Many of these groups thrive precisely because there are no professionals in them. Moreover, we question whether researchers can truly “evaluate under which conditions and for whom (p. 1170)” online groups are effective given the inherent nature of these groups, characterized by minimal control, open-door approach, and unidentifiability (e.g., Wright & Bell, 2003). Eysenbach et al. also stated that research is needed on “how effectiveness in delivering social support electronically can be maximised (p. 1166)" but disregarded the given non-paternalistic, self-help nature of these groups. The problematic attributions made by Eysenbach et al. make the premise of their analysis shaky, perhaps unjustified. Moreover, we argue that professionals are not responsible for maximizing or delivering benefits in a self-help system and ought to practice appropriate boundaries. The online peer-to-peer support group environment would apparently benefit the most by nurturing, respect, and privacy, rather than intrusive external interventions in an emotionally vulnerable setting. Thus, qualitatively- oriented and ethnographic methodologies (Hine, 2000) seem to better fit this special area of research in cyberspace.

Members and leaders of online groups could, however, benefit from guidelines derived from extensive field experience. Published indicators of quality would help them educate themselves on factors that might improve their online peer-support experiences and minimize their risk. Examples of such guidelines are provided by Grohol (2001), Madara (2004), and Pector (2004). These resources, as well as other writings on online support groups which based on experience and appropriate research (e.g., Alexander, Peterson, & Hollingshead, 2003; Lieberman & Russo, 2001 -2002; Till, 2003), note that the tone of interaction depends on the quality of moderation by either naturally emerging leaders or professional moderators. Most of the studies in Eysenbach et al.’s review, however, involved professional moderation, whereas the vast majority of Internet groups are unmoderated. Indeed, the rapid disclosure of intimate personal details fostered by the online disinhibition effect (Suler, 2004) may leave participants vulnerable to deception, coercion, anger, and criticism that can arise in unmoderated groups. We believe a review of existing qualitative and quantitative studies would offer valuable advice to self- help communities on how best to create a positive, healing environment and avoid abuse.

Numerous systematic and nonsystematic observations—and our own clinical experiences—reveal that online support groups provide much relief to people who struggle with a variety of mental- and health-related difficulties. Most of these people do use other resources of variable quality, from personal therapy, to medications, to support by family, to worship, to use of amulets, to escape into drugs or gambling. An investigation that aspires to closely study effects of online support should not ignore or adjust for these other resources, but should integrate them into the research design. This results in ecological validity, documenting the extent to which the conditions under investigation reflect real life and natural circumstances. Contrary to Eysenbach et al., we believe that interaction effects of participation in online support groups and other sources of help have significant impact and should be included in systematic analyses. Lastly, we encourage thoughtful methodical reviews of qualitative research already conducted on online groups. Qualitative studies have described characteristics of those who use such groups, the process by which self-help occurs, perceived benefits, potential risks, and the types of individuals that may be helped or harmed by online support communities. Such information, in addition to appropriately- and specifically-designed quantitative studies, will help health professionals intelligently advise patients who use online support resources.

References

Alexander, S. C., Peterson, J. L., & Hollingshead, A. B. (2003). Help is at your keyboard: Support groups on the Internet. In L. R. Frey (Ed.), Group Communication in Context: Studies of Bona Fide Groups (pp. 309-334). Mahwah, NJ: Erlbaum.

Cummings, J. N., Sproull, L., & Kiesler, S. B. (2002). Beyond hearing: Where the real-world and online support meet. Group Dynamics, 6, 78-88.

Grohol, J. (2001). What to look for in quality online support groups. Retrieved on May 16, 2004, from: http://psychcentral.com/archives/support_groups.htm

Hine, C. (2000). Virtual ethnography. London, UK: Sage.

Madara, E. (2004). How to develop an online support group or Web site. Retrieved on May 16, 2004, from: http://mentalhelp.net/selfhelp/selfhelp.php?id=863 Azy Barak

Pector, E. (2004). Internet support networks: Suggestions for a safe & sound experience. Retrieved on May 16, 2004, from: http://www.synspectrum.com/support.html

Suler, J. (2004). The online disinhibition effect. Retrieved on May 16, 2004, from: http://www.rider.edu/suler/psycyber/disinhibit.html Till, J. E. (2003). Evaluation of support groups for women with breast cancer: importance of the navigator role. Health and Quality of Life Outcomes, 1, (16). Retrieved on May 16, 2004, from: http://www.hqlo.com/content/1/1/16. Wright, K. B., Bell, S. B. (2003). Health-related support groups on the Internet: Linking empirical findings to social support and computer- mediated communication theory. Journal of Health Psychology, 8, 39-54.

Azy Barak, Ph.D.
Fellow, International Society for Mental Health Online
Departments of Psychology and Education, University of Haiha, Haifa 31905, Israel
azy@construct.haifa.ac.il

John M. Grohol, Psy.D.
Fellow, International Society for Mental Health Online
39 Colby St. Bradford, MA 01835
john@grohol.com

Elizabeth Pector, M.D.
1220 Hobson Road, Suite 216, Spectrum Family Medicine, Naperville, IL 60540
synspectrum@yahoo.com

Competing interests: None declared

Competing interests: None declared

Azy Barak, Professor, University of Haifa

John M. Grohol, and Elizabeth Pector

Departments of Psychology and Education, Unversity of Haifa, Haifa 31905, Israel

Click to like: