TEXT-BASED MUTUAL AID

Thousands of email and Web-based self-help groups exist on the Internet. There is one devoted to every imaginable condition or disorder. Some are very active, generating 50 or more messages a day. Many generate about 50 messages a month. A large but unknown number of these lists are no longer active at all. Such groups often function as communities, developing their own culture and norms (Rhinegold, 1993; Walther, 1996; Wellman, 1996).

Participants in online communities often carve out roles for themselves just as they do in physical communities. For example, there are protagonists, experts, people who befriend others, people who always try to respond, witty people, sarcastic people, and lurkers who watch silently. (Preece & Maloney-Krichmar, 2003).

Social support, practical information, shared experiences, positive role models, helper therapy, empowerment, professional support, and advocacy efforts are all therapeutic factors that Internet self-help groups share with face-to-face groups (Madara, 1999). The asynchronous nature of e-mail online support groups provides the additional advantages of 24-hour availability, selective participation in responding to messages, anonymity and privacy, immediate and / or delayed responding, and recording of transmissions (Sparks, 1992). Members can save notes for later study. They also have a much higher ability to decide which topic to respond to, or to start a new topic at any time, in Internet self-help groups compared to f2f ones.

In an article titled Who Talks? The Social Psychology of Illness Support Groups, Davison et al. (2000) researched self-help group participation by people diagnosed with the twenty most prevalent and deadly physical and mental disorders. They examined Internet self-help groups and f2f groups in four major U. S. metropolitan

9 Internet Self-Help and Support Groups

areas. They counted the number of the f2f self-help groups that exist for the target disorders in each of the four large metropolitan areas. They contacted each group to get the frequency with which the group met and the average attendance size of the group. They counted contributions to online bulletin board forums (on AOL and the Internet) devoted to the same twenty disease categories used in the f2f survey. The results of the f2f group survey confi rmed that Alcoholics Anonymous (AA) is by far the largest and most well-attended f2f self-help organization in the U. S. “Of the 12,596 total groups identifi ed for all of the conditions studied, across all cities sampled, AA groups constituted 10,966, or 87%, of the group counts” (p. 209). Based on the number of groups (and group size), the disorders that have the highest rates of f2f self-help group memberships are, in order, alcoholism, AIDS, breast cancer, and anorexia. Attendance was lowest for heart disease, hypertension, migraine, ulcer, and chronic pain. Diseases viewed as the most embarrassing and stigmatizing had the highest rates of self-help group participation.

The results of this study of online self-help groups showed that chronic fatigue syndrome had the highest activity level of the Internet groups, and multiple sclerosis had the highest activity on AOL. Combining both the Internet and AOL activity of the online groups, the top four disorders, listed in order of participation are multiple sclerosis, chronic fatigue syndrome, breast cancer, and anorexia. The authors explain these results by stating that “virtual support can be very attrac- tive to those whose disability impairs mobility.” It is particularly useful for people with rare conditions, who cannot get together physically. Alcoholism was ranked the eleventh most prevalent type of group online. The authors postulate that the large availability of f2f AA groups makes the online AA seem “a poor substitute for the group experience.” The research revealed that “having an illness that is embarrassing, socially stigmatizing, or disfi guring leads people to seek the support of others with similar conditions (p. 213).” The most frequently attended self-help groups, both f2f and online, were the groups devoted to disorders that were rated as “embarrassing to talk about” (Davison et al., 2000).

One of the fi rst published reports of an online self-help group was in 1984, in an article in the Exchange Network, the newsletter of the National Volunteer Center. Ed Madara, then the director of the New Jersey Self-Help Clearinghouse, wrote about a weekly online text-based conference taking place on CompuServe. The members were all disabled. They used the computer conference to offer each other emotional support and practical information. The organizer of this group was deaf and blind. He used a Braille keyboard to enter his messages, and an early version of a text-to-audio software program to hear replies from other members of the group. This may have been the fi rst online self-help group. Madara wrote at that time what turned out to be a very prophetic statement about the experience; “embarrassing to talk about” (Madara, 1984).

An analysis of 500 messages posted to an online self-help group devoted to people with a knee injury found that almost 45% of the messages were of a

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supportive nature. People posted their personal stories, presumably containing what happened to them and what they had to go through to deal with the injury. Almost one-third of the messages were of this type. The rest were mostly factual information, given in response to questions asked of the group. No hostile responses or postings were part of that sample (Preece, 1999).

Observations of an online self-help group for people with an eating disorder pointed out the advantage the online anonymity provides to this group in particu- lar: Not being present with each other f2f meant that no one had to worry about judgments related to his/her physical appearance. This gave an extra level of safety to people who are often overly concerned with such judgments. The author made the strong statement that “the urgency of grasping the therapeutic benefi t of online support groups can be seen in the astronomical costs (and often ineffective) results of traditional health care” (Walstrom, 2000 p. 762). Using a “microlevel” discourse analysis qualitative methodology, the author was able to document, in its naturalistic setting, the effective coping strategies that members shared. The authors conclude that the virtual nature of online self-help groups decreases the evaluation anxiety that is present when people with an eating disorder meet in a f2f group. As a result, the reduced accountability and decreased evaluation anxiety enhance participation in the online self-help group, increasing the therapeutic value members receive (Walstrom, 2000).

A randomized research study reported about the value of text-based self-help for teenagers who suffered from cystic fi brosis (CF), and who were being treated by the Johns Hopkins CF clinic ( Johnson et al., 2001). Teens with this disorder can not be as physically active as they would otherwise and often are kept at home by their families. CF in teens is the kind of rare disorder for which geographic separation prevents most children from meeting for peer support f2f. The researchers created a “highly interactive Web-based support service” that included an area for the subjects to post text messages to each other. The goal of this study was to explore how such a group might impact teens’ perceptions of (1) their disease, (2) their available peer support, and (3) their assessment of the usefulness of the virtual support group. At the start of the study, all participants were surveyed to assess their knowledge about CF and their perceptions about the type of support they received from both peers and the staff of the Johns Hopkins clinic. Their opinion about the potential value of the Internet as a support environment was also recorded. Half of the teenagers in the study group were assigned to use the online resource at the start of the year-long study. They were given the this survey again at the fi ve-month point. A comparison cohort group was made to wait until fi ve months into the study before using the Web resource. Both cohorts were surveyed again at the end of the one-year study. The forum that allowed the subjects to interact socially with each other was the most frequently used part of the site. The results showed a signifi cant increase in the subjects’ perceptions of their support from peers. “The most signifi cant event that this project catalyzed was an opportunity

9 Internet Self-Help and Support Groups

for the participants to bond and to discuss both typical adolescent issues and those specifi c to CF” ( Johnson et al., 2001).

The appeal of Internet text-based communications to someone with hearing loss is self-evident. A random sample survey of an online self-help group for deaf people found two factors that predicted active participation in the group. One was

a lack of real world social support. Members with fewer friends or family they were emotionally close to were the most active participants. They were able to fi nd the support they had been missing from their online self-help group. They were also the members most likely to remain part of the group for the longest time. The predictive factor was members’ coping ability prior to joining the group. People less severely disabled, who were already coping well and using real-world professional help as well as other online resources, were more active in the group than were other members. For this cohort, the online support represented a useful opportunity to give support to others, engendering the therapeutic benefi t of helper therapy. Members who had family and f2f friends that participated with them as active members of their online group reported the highest level of emotional benefi ts from their participation. The authors believe that having friends and family join in as fellow Internet self-help group members is easy to do and very therapeutic in a unique manner (Cummings et al., 2002).

Walther and Boyd (2002) published an extensive analysis of Usenet self-help groups. They gathered data from 340 subjects who responded to a survey. The results were revealing not only for what the participants found to be of value in their online groups, but also for what participants reported to be the disadvantages of f2f self-help groups. Members endorsed items on the survey related to the potential for embarrassment if offl ine friends and family were to know about the details of the problems they were sharing with their online group. This study found that members felt that their online peers judged them to a lesser degree than their real-life acquaintances did. Online self-help groups have a unique therapeutic advantage in that members experience decreased concern about the potential for embarrassment when they self-disclose in text-based relationships (Walther & Boyd, 2002).

An analysis of two weeks of notes to an Internet Usenet self-help group for depression revealed, “Comments intended to convey support, acceptance, and positive feelings (i.e., emotional support, agreement, and humor) were observed over seven times more frequently than comments that conveyed negative sentiments (i.e., disagreement / negative)” (Salem et al., 1997, p. 198). About half the notes contained a message intended to help another member. Compared to similar f2f groups, the online group had a much higher rate of self-disclosure but a less formal structure and group process. There was a surprising lack of gender difference in the amount of, and type of, messages posted, with men participating and self-dis- closing at nearly the same rate as women. In the two weeks that this group was studied, some members felt it had grown too big, and started their own smaller and more private group. The ease with which text-only Internet groups can be formed

232 Storm A. King and Danielle Moreggi

makes this kind of splinter group formation much more common online than f2f, and less disruptive. As with other studies that employed naturalistic observation, the researchers noted the need to take extra precautions in the manner in which they reported the contents of the notes. Members had posted very personal information, not thinking that their message might end up published in an academic journal (Salem et al., 1997).

One group of researchers reported that Internet self-help groups remove access barriers caused by time constraints, geographic distance to the group, disability of the member, limitations in the ability of the member to communicate, scheduling problems, rarity of a disease that would limit the availability of membership, and fear of f2f participation. Online self-help provides a much broader and dif- ferent mixture of social support, and an enhanced sense of universality and diversity (Braithwaite et al., 1999).

One survey of Internet self-help groups reported what members perceived to

be the unique value of their online group. Highly rated responses included increased opportunity to share experiences with others, the convenience of the service, and the convenience of being in your own home. Nearly half the respondents cited “the variety of the participants” as being one of the most benefi cial factors. “By taking away the barriers of social status, location, physical attributes, and emotional inhibi- tions, Internet groups provide people with a communication tool designed to help them address specifi c problems.” (Dubin et al., 1997). An important and reliable fi nding is that members who rate online self-help groups as valuable are frequently using the online self-help group to supplement f2f self-help or professional therapy (King, 1994; Stein, 1997; Dubin et al., 1997).

One gains status in f2f relationships by offering support that others regard as valuable and advice that others consider correct. Online, the question of legitimacy and authority is not nearly as clearly established. Galegher et al. (1998) researched how online self-help group members establish legitimacy and authority. They compared three Usenet support groups to three Usenet hobby groups over a three-week period. Messages on the online self-help groups more often contained a reference to the length of time the originator had been a member of that group. Members were deliberately and overtly establishing themselves as an authority in, at least, the workings of that group, and by inference, in associated recovery or with coping strategies. Newcomers established themselves by asking pertinent, important questions. The questions that were posted “out of the blue,” with no mention of how long the member had been part of the group or any information that legitimized the poster, were the ones that most often went unanswered. In the hobby groups, this was not the case, and the addition of information to legitimize the member did not seem important to other members and did not have the same consequences that it did in the support groups. The researchers found that the length of the average message was longer in the support groups, and there was more self disclosure of intimate details (Galegher et al., 1998).

9 Internet Self-Help and Support Groups

There are unique disadvantages to text-based self-help groups. Members negatively affected tend to drop out of the group. Only the “sturdy” group members, those not overly put off by the occasional fl ame war or by messages disruptive to the group process, are left to answer any research questions. This self-selection process positively biases the outcome of self-help research studies. In the online environment, it is particularly diffi cult to determine how many people have tried text-based self-help and did not fi nd it helpful.

An article that illuminates the negative potential of online self-help groups focused on the experiences of women seeking help from online groups and from online therapy. Finn and Banach (2000) reviewed the literature and reported about the benefi ts as well as the hazards of therapeutic text-only relationships. The list of the unique potential hazards include “inaccurate information, online harassment, loss of privacy, and cyberstalking” (p. 794). The authors note that “socialization for survival in cyberspace has not yet become part of the normal growing-up experience of women” (p. 792) and conclude that the risks and dangers of these online resources were not yet common knowledge.

There have been documented cases of groups that had to disband due to the high levels of disruption they experienced. Waldron et al. (2000) reported of an online group for sexual abuse survivors that received so many sexually explicit advertising messages that the groups choose to disperse rather than continue in that environment. These researchers documented the ease with which an online self-help member can have his/her privacy violated by another member who, not being intentionally harmful, did not understand the nuances of online self-help participation. This occurred when a member’s real-life address was mistakenly made public to the group. The sender had intended the e-mail to go only to one other member (Waldron et al., 2000). Other researchers have warned about the potential for what they observed during a fl ame war. The Internet self-help email list became “a breeding ground for inappropriate venting, where endless venting with no resolution and no self-refl ection was, at best, a wasteful exercise” (Worotynec, 2000, p. 808).

Some aspects of text-only self-help groups function both as an advantage and a disadvantage at the same time. For example, the number of participants can

be much larger than what most community meeting spaces could accommodate. Any member may type to the group at anytime. While this makes for benefi cial communications with a much more diverse membership than is possible f2f, it also exposes the member to the potential for information overload. Many online self-help group members join very active groups with high hopes, only to fi nd themselves swamped by the large volume of e-mail. In any new social endeavor, if the rules about what is acceptable behavior are unknown, people unconsciously try to apply the guidelines that they know work in f2f interactions. For example, in f2f situations, it is normally not acceptable to ignore a fellow member of one’s social support group. When involved in a very busy e-mail list, however, most

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people have to ignore some percentage of the messages in order to limit their commitment to the group to the amount of time that is feasible for them. Some people will be able to adjust their expectations and feel free to read only messages they have time to digest or respond only when they have something of signifi - cance to say. Other members will choose the simpler, less (perceived) risky path of dropping out completely.

The asynchronous nature of the communications is also both an advantage and a disadvantage. On the one hand, it makes possible ease of scheduling and the ability to participate in more than one self-help group during the same period of time. On the other hand, it is the source of much of the frustration and misunder- standing that arise from not having corrective feedback immediately available to guide one’s interpretation of text-only communications.

TEXT-BASED MUTUAL AID