A brief background to online
support

by Dr. Alison Darcy 8 February 2008

Online support groups are a popular form of support service delivery now common on the Internet. They can be in either asynchronous (e.g. newsgroups, bulletin boards) or synchronous (e.g. chat rooms) form. Surveys conducted both in the US and Ireland show that a substantial proportion of Internet users access the Internet for health reasons. In 2002, 80% of American Internet users (55% of all adults) accessed the web for health information. And in 2000, 4.9 million American Internet users participated in emotional support settings on line (Fox, 2000). In Ireland, a survey conducted in 1999 reported that about half of all Irish households have Internet access (Amarach Consulting, 2000). And this figure has probably risen due to strong home-computer sales. Almost 3 in 10 Irish Internet users frequented newsgroups, and 22% visited chat rooms regularly (Amarach Consulting, 2000). Despite the ubiquity of Internet based support groups, there is widespread scepticism about how well the traditional face-to-face support model would translate to the Internet. However, findings from the few preliminary studies of online support that have been conducted have been largely positive. This article will address some of these concerns. Given the emphasis that UPR places on evidence-based tools, this article refers only to studies that have been published in peer-reviewed scientific journals.

One example of a successful online support group was for women with breast cancer. The intervention consisted of facilitated synchronous (real-time) meetings with an asynchronous newsgroup forum. The programme was received well, with 2/3 of participants finding it helpful. Importantly, the investigators demonstrated that participation in the support group led to positive symptom change. Patients showed a decrease in depression, cancer related trauma, and perceived stress (Lieberman, et al., 2003; Winzelberg, Classen, Roberts, et al., 2002).

Another well-supported online support group is contained within an intervention for women with high body image concerns, developed in Stanford University, called Student Bodies. The online support component also demonstrated symptoms change when compared with a control group, with participants showing significantly greater reductions in weight or shape concerns than controls (Zabinski, Wilfey, Calfas, et al, 2002). Interestingly, 79% of participants reported that online conversations were much better than face-to-face conversations, and 93% preferred synchronous (real-time) to asynchronous communication (Zabinski, Celio, Wilfley & Taylor, 2003). This programme has been a breakthrough in terms of internet-delivered interventions, as it has recently demonstrated that participants’ reductions in shape and weight concerns were sustained after 3-years.

These two interventions are but two examples of the kind of service that can be delivered over the internet to effect positive and importantly, sustained changes in participants. However, substantial scepticism still remains.

Commonly cited fears around online service delivery

Chat rooms are truly anonymous, not requiring an email address or any other form of identification in order to gain access, and they allow for users to freely move between virtual spaces or sites. One of the common fears born from this anonymity and ease of movement is that online support groups will tend to attract inappropriate, malicious participants, or even people pretending to be suffering from the illness in question (termed “Munchausen by Internet” or MBI by Marc Feldman; Lamberg, 2003). However, preliminary studies indicate that this may not be the case. A study of an online support group for depression found that all but 2 of the 103 participants had a diagnosis with the remaining 2 participants scoring very high on a measure of global depression (Houston, Cooper & Ford, 2002). Another study investigating an online support group for people with eating disorders – bodywhysConnect - demonstrated that participants had symptoms that were at least, if not more symptomatic than samples that were hospitalised – traditionally considered to be at the most severe end of the spectrum (Darcy & Dooley, 2007).

Another fear surrounding the use of online support services is that it may discourage their participants from availing of more traditional treatment, or that it may somehow alienate them from their therapist or other treatment provider. Again, findings from preliminary studies would indicate otherwise. In the earlier depression online support study, 96 out of the 103 participants were in treatment for depression at baseline. Further, after 1 year of participation, users had not abandoned their treatment, and it may have even facilitated a better level of care. 71.8% of participants had discussed their use of the internet support group with their traditional care providers, and some reported that their involvement in the group had encouraged them to become more active in their health care by asking their provider a question or influencing a change in medication (Houston et al., 2002). Thus the authors concluded that participants in this support group were using their online experience to supplement, not replace, their traditional health care. A point worth noting here, and one that cannot be ignored, is that many people with mental health problems will never access traditional therapy. 60% of those registering for bodywhysConnect were not receiving formal treatment, even though their clinical profile would suggest that they could benefit from it (Darcy & Dooley, 2007)

One of the oldest fears relates to the stereotypical image of the socially maladjusted Internet user and asserts that people who frequently use the Internet become more socially isolated as a consequence. Findings here have been mixed so this concern warrants a little more attention. One early study (Kraut et al., 1998) famously reported how people in 73 households demonstrated a significant decrease of social contact and increase in depression after the households got Internet access. This study received much publicity and attention by researchers with over 230 citations (Institute for Scientific Information). However, a much less publicised follow-up study revealed that the depression effect was not reliable, and Internet users are not, in fact, unusually socially maladjusted (Kraut et al., 2002). Other recent data suggests that Internet users do not differ from non-users in terms of social networks, with one study finding little difference between time spent socialising with friends (9.7 hours for users and 9.9 hours for nonusers; Lebo, 2000) or participation in a club or volunteer organisation (2.4 hours for users, 2.0 hours for nonusers). Another telephone study revealed that 72% of Internet users had visited a friend or relative on a given day compared to 60% of nonusers (Lenhart, 2000). And comparing data from a number of Internet studies with 21 year olds from 3 university pools, Gosling, Vazire, Srivastava & John (2004) found no difference in neuroticism or introversion and thus conclude that the preconception of the Internet user as socially maladaptive is a myth.

Evidently, these data relate to a broad variety of Internet users, and one could reasonably wonder whether they generalise to participants of an online support group for a mental illness that is heavily associated with interpersonal problems. The earlier depression study, for example, did find that compared to primary care patients, online support group users had less social support (Houston et al., 2002). Again, it is difficult to isolate cause and effect, and this difference was most likely mediated by other illness-related factors such as the greater prevalence of chronic depression in the Internet sample, and a higher proportion of the hospital sample were married and employed. One important observation, however, was that levels of support did not decline over one year of use (Houston et al., 2002).

The social networks of people with some mental illness are deficient. People with eating disorders, for example, report higher levels of social isolation with fewer sources of tangible support (eg, Lacey, 1992; Fairburn et al., 1999). We also know that disturbed interpersonal factors predict outcome. The depression online support group study shows that people who have fewer sources of tangible support use online support groups. It is conceivable therefore that without the same kind of social risk involved in face-to-face encounters, people may find it easier to seek help online. As long as participation in Internet support groups does not cause an increase in isolation over time, and the evidence suggests it does not, online support groups may serve as a platform from which someone can “graduate” to more traditional tangible support networks. There do seem to be some advantages that particularly benefit those who are already socially isolated/deficient.

The Internet can bring together people with relatively rare disorders, as well as disorders that are debilitating or pose mobility problems (Davison et al., 2000). Some mental illnesses are accompanied by a sense of shame that can cause delay in seeking treatment (Fairburn et al., 1993; Neumark-Sztainer et al., 2002). It has been suggested that communicating online allows users to feel safe while exploring emotions and developing bonds (Colon, 1997). Furthermore, support has been shown to be provided across traditional, educational, status and age-related boundaries, serving to reinforce the theory that computer mediated communication removes the barriers associated with the social standing of the communicator (Winzelberg, 1997).

The final fear around online services surrounds the quality of computer-mediated communication, and again, theorists are divided. In the absence of non-visual cues that are present in the face-to-face environment, are encounters more shallow and less intimate? Some theories such as the Social Presence Theory or the Social Context Cues Theory argue that without the physical presence of another person, and in the absence of social cues, relationships become less personal and intimate (Whitty, 2002). At first glance it would appear that computer mediated communication could not be as rich and as valuable as face-to-face communication because of the lack of non-verbal cues (Daft & Lengel 1986), just like the telephone has been shown to uniquely affect how people converse. However, just like the telephone, it appears that communicating online may offer additional specific advantages to people with a mental illness or difficulty. To illustrate this, we will use the example of eating disorders.

Without face-to-face contact and all of its accompanying self-consciousness, it may be easier to discuss weight and shape concerns. Online support offers opportunity for true anonymity which can facilitate self-disclosure (Miller & Gergen, 1998). Communicating online neutralises potent social factors such as physical attractiveness or vocal characteristics (Davison et al., 2000). In a discourse analysis of an asynchronous support group for people with eating disorders in the form of a bulletin board (forum), Winzelberg (1997) found that the participants used similar supportive and helping strategies as those found in face-to-face groups.

The advantages to the service provider

There are a number of key advantages of offering online support groups when compared with face-to-face groups. Online support groups are very cost effective not only for the participant but from the point of view of the service provider too. Delivering conventional face-to-face support can be hampered by a number of factors. Organising meeting times, venues and insurance etc. can be extremely resource intensive. For support groups that are established to help people with relatively rare illnesses, hosting meetings where there is no guarantee how many people will attend can be a risky endeavour. These problems could dissuade all but the largest or most established organisations from hosting support groups, yet groups of all sizes have an important part to play in democratising health information, often helping to shape medical understanding of their respective disorder of interest (Fox, 2001).

The Internet can go some way toward offering a solution to these problems. The Internet is not, as is often believed, a replacement for the real world, but is part of it. Although it is in no way a substitute for face-to-face contact, it could be an important supplement, especially for people with mobility issues. No other medium has such potential to reach such a large number of people at such minimal expense. Online support groups are very cost effective for both participant and the service provider. Furthermore, little is known about the substantial number of people that do not receive treatment. Finally, online support groups may be a cost effective way of reaching sub-clinical cases, and as such may serve as an important tool for prevention.