This work is a chapter for the Academic Press book "Psychology and the Internet", edited by Jayne Gackenbach. Copyright and all rights therein are retained by Academic Press. This material may not be copied or reposted without explicit permission. (Copyright 1998 by Academic Press).
Cite as;
King, S. A & Moreggi, D. (1998). Internet therapy and self help groups - the pros and cons. In J. Gackenbach (Ed.), Psychology and the Internet: Intrapersonal, Interpersonal and Transpersonal Implications (pp. 77-109). San Diego, CA: Academic Press.
Internet therapy and self help groups - the pros and cons.
111. Self-help online.
Before discussing the advantages and disadvantages of online self-help groups, we must first review what is known about traditional self-help organizations. Alcoholics Anonymous is the oldest, largest, and most widely understood self-help group in existence. As such it has been a model for the development of a tremendously wide range of other self-help groups that are devoted to everything from physical disabilities to mental illness. It has, at its core, the principle of members sharing experiences, strengths and hopes in order that members may solve their common problem. It is this self referenced, rather than authoritarian, instruction and guidance that has been exported in the development of a huge variety of self-help groups. These groups offer both an alternative and adjunct to the traditional psychotherapy arena. With the development and expansion of self-help groups throughout the world, the psychological community of mental health professionals has developed various opinions about the therapeutic values of self-help groups.
The term self-help is misleading. It implies that people are involved in an effort to help only themselves, where in fact a defining feature of self-help groups is that people help one another. Mutual aid groups is the term preferred by researchers. It better represents the process of people helping one another. The term "mutual aid" captures another important element of these groups, helper therapy. Helper therapy is the term for that part of the therapeutic value of these groups that is available because each person can be both a helper and a helpee. Humphries & Rappaport (1994) have suggested that the terms self-help and mutual aid groups be used interchangeably in the professional research literature. They do note that the term self-help is the preferred term among self-help members. The recommended term for groups that are led by professional mental health workers is support groups. Professionally led and professionally organized support groups will be discussed later, and should not be confused with self organized self-help groups.
The last few decades have seen an enormous growth in the self-help movement. Dissatisfaction with traditional medical models for solving emotional disorders, and the general de-stigmatization of seeking peer support has fueled this growth. Between 8 and 10 million Americans now participate in f2f self-help of some form (Wuthnow, 1994; Kessler, Mickelson & Zhao, 1997). By far the largest segment of these groups deal with substance abuse problems. All mutual aid groups function as normative communities, allowing members to understand and feel that their experiences with their problem are not abnormal. "At a time when membership in mainline religions is declining, some Americans seem to be finding spiritual renewal in small groups. Even mutual aid self-help groups that do not address spirituality as directly as do 12-step groups may benefit member's spiritual lives. The experience (distinct form the intellectual realization) of learning that we need not suffer life's burdens alone, that we have a place in the human community, and that we have something both to offer and to receive from other beings is too profound to be captured by such terms as "improved mental health" or "better coping. " (Humphreys, 1997 p. 15).
All self-help and mutual aid organizations have in common the fact that members participate with the expectation of receiving emotional support, sharing personal experiences, and finding new ways to help themselves cope with their shared problems. An important aspect of mutual aid groups is that they are grassroots organizations that are controlled by the members themselves. "One of the empowering features of self-help groups is that members experience autonomy, control of the group, and a sense that they are experts on their problem" (Humphries & Rappaport, 1994, p.219).
A summary of what online self-help groups offer its members is provided by Madara (in press). Madara explains that social support, practical information, shared experiences, positive role models, helper therapy, empowerment, professional support, and advocacy efforts are all factors that operate online, just a they do in face to face groups. The asynchronous nature of email online support groups provides the additional advantages of "24 hour availability, selective participation in entering and responding to messages, anonymity and privacy, immediate and/or delayed responding, and recording of transmissions." (Sparks, 1992). Members can save notes for later study, decide which sub-topics to engage in, and know that other group members are not judging them based on physical appearance.
It is crucial for the therapist who is considering referring a patient to online mutual aid that they first understand the nature of the differences between f2f and online self-help groups. Additionally, the newness of this arena, and the lack of research data about the value of online groups, suggests that a therapist who is supplementing a clients treatment with online modalities be personally experienced with the nuances of text based interpersonal relationships.
111. A. Review of the research on online self-help.
For people who live in rural settings, people that have disabilities that inhibit their movement and for others who are emotionally unable to seek f2f peer support, the recent advent and explosion of online self-help forums represents a rare opportunity. People confined to hospital beds, people with rare disorders, and people without transportation can now connect to the world and find others like themselves (Madera & White, 1997). There exist online self-help groups that have no f2f counterpart. Madera mentions a group devoted to survivors of traumatic car accidents, and one for victims of stalkers.
The results of a recent (1997) survey (n=52) of people that use on-line self-help groups seems to support the hypothesis that people are using these groups as an adjunct to their efforts in recovery from various disorders. Almost half of the respondents reported that at the time they participated in the survey, they were currently in individual psychotherapy. Further, nearly 60% of the total respondents reported that they were attending traditional group therapy at the same time. Results from a question that addressed the therapeutic value of these groups, on a Likert Scale with one being the lowest and five the highest, yielded an average score of 4.3. There were two primary reasons given by respondents as to why they were receiving a unique form of value from having participated in these groups. One reason was indicated by a 63% response from those who appreciated the "opportunity to share experiences with others". Approximately half found these groups to be unique because of "the convenience of the service". The greatest benefit reported was "the convenience of being in your own home" (73% of the sample). Nearly half the sample cited "the variety of the participants" as being one of the most beneficial values gained from being involved the group (Dublin, Simon & Orem, 1997).
Some people have their first contact with self-help organizations by their online presence. There are documented cases of drug addicts who became willing to give up a destructive habit for the first time after witnessing the conversations between members of a recovery online self-help group (King, 1994). The frequency of this type of initial exposure to treatment for disorders is as yet unknown. GriefNet, a self described "virtual social service", operates a web site that connects people who are dealing with a death to f2f as well as Internet resources. Their site gets 3,700 hits per week. It is stated on their web page that their service is needed due to "the disappearance of the extended family and wide geographic dispersion of family members, individuals no longer have as ready access to traditional sources of help among family , communities and religious groups when facing death dying and major loss". (See http://griefnet.org/).
People who are responsible for the care for an elderly person are often relatively homebound. Long before the advent of the web, a study was organized to see if caregivers for people with Alzheimer's disease could benefit form being linked to a source of information and to each other for support (Brennan, Moore & Smyth, 1991). Topics discussed showed that the link (between 22 caregivers) was being used for emotional support, advice, information and sharing of resources. The connection to the message areas to read notes and type to other caregivers was used far more than the access to the data bases. This is an indication that it is the interpersonal interactivity that is most salient and important to people in need of affiliation.
One early study looked at addicts helping each other online to stay clean (King, 1994). There was a statistically significant positive correlation found between the number of hours per week a respondent reported that they used the online group and the amount they reported that online participation improved their program of recovery. Fifty-eight percent of survey respondents reported they had made contact with others they met on online; by phone, postal service mail or in person. This contact variable showed a positive correlation with the length of time a respondent reported being in recovery and the number of months of online group use. Improvement in recovery program was also positively correlated with total months of online self-help use and with the reported frequency that respondents used the online groups to seek advice. It appears that the regular, frequent contact with members from widely separated backgrounds and experiences available on in these online groups can improve one's ability to remain drug free. It must be noted that almost all respondents to the survey reported that they used online group participation to supplement regular attendance at Alcoholics Anonymous or Narcotics Anonymous.
One study downloaded and analyzed notes from Internet forums devoted to survivors of sexual abuse. Finn and Lavitt (1994) found that there were distinct advantages for this population in being able to use the anonymity provided online to decrease the level of anxiety members felt about sharing shameful experiences. Finn questions several aspects of the therapeutic value observed in the notes. Specifically, there was some indication that people were posting short notes that did not contain full stories, and that women felt the openness of these public forums to be problematic. There were no assurances that perpetrators would not be lurking in the survivors group. Separate groups were available for perpetrators in recovery. The advantages noted included the portability of the community. Members involved in online groups do not have to worry about members moving away - anywhere that telephones go the group can go.
Covert access by researchers to public Internet forums where highly personal notes are posted is a growing concern. Ethical treatment of human subjects in Internet naturalistic observations requires the researcher to be keenly attuned to the nuances of such public/private spaces. The journal The Information Society: an International Journal, edited by Rob Kling covered this topic in a special issue titled "The ethics of fair practices for collecting social science data in cyberspace", the April-June edition in 1996 (vol. 12 no. 2). Researchers from different fields of the social sciences were recruited to write responses to the seed article, which set forth specific ethical guidelines for the treatment of human subjects in cyberspace (King, 1996a). Debate centered around the free access to public forms by researchers, as opposed to the perception of Internet users that these forums were for interested parties only. People do not post notes to Internet forums thinking that researchers may be lurking, and that they may use their notes in the published results of their studies. This is especially true in the self help groups, were very personal information is posted to what is a public space.
Studies have now been done on a number of online self-help forums. Dunham (1997) set up a study of young single mothers, donating computers to them so they could connect from home to provide each other with emotional support and advice on coping strategies. Results showed a high level of use of this resource and an over all decrease in the level of stress reported by the moms. Over half the notes exchanged were supportive in nature (see http://www.apa.org/monitor/nov96/novnews2.html).
Another study of a group dealing with a very sensitive topic was recently published. Moursund (1997) performed participant observations in a MUD (Multi User Domain) called Sanctuary. A MUD is a form of Internet chat, a real time synchronous connection to a text based virtual reality where rooms and objects in the rooms are created by members, and described automatically when someone logs on to that space. Sanctuary is devoted to adult survivors of sexual abuse. Members also had access to an email forum, and could communicate asynchronous as well as in real time. Moursund analyzed notes posted for content, taking great care in the published report to respect the members confidentiality, and to conform to the extra layers of protection afforded by the protocols defined in the Sanctuary environment. These guidelines proscribed researchers from recording the messages posted in real time to the different "rooms" of the MOO. The results indicated that most of the messages were of a type of self-disclosure, the sharing of experience and hope. Second most frequent were messages that conveyed information about what members had learned from other sources, coping strategies and answers to previously posted questions. Moursund concludes that virtual spaces like Sanctuary are an important and valuable resource for victims of trauma.
Obsessive Compulsive Disorder (OCD) can be debilitating and shameful. F2f self-help groups do exist for OCD, but they are not widespread and often meet only once a month. A recent survey of an Internet forum for people with OCD (Stein, 1997) concluded that "a useful component of the management of OCD may include joining OCD-L or a similar Internet support group, as benefits seem to outweigh possible problems." Of 42 respondents to the survey, 80% were currently in treatment by a mental health professional, all responded that the list was either helpful or very helpful in learning about the symptoms of OCD, and "Subscribers did not report that the list had mislead them in a significant way, and subscribing to the list triggered symptoms in only a minority of respondents." (See http://www.ex.ac.uk/cimh/stein.htm).
A study of notes posted to an eating disorder online self-help groups (Winzelberg, in press.) found that the most frequent category of postings were of a personal disclosure type. The level of detail that members shared was notable. "Support was provided across traditional boundaries of age, status and education." The few members who glamorized their disordered behavior were corrected by others with more solid recovery. Incidents of flame wars were few, and there were a lot of referrals to f2f psychotherapy for members that revealed they were trying to recover on their own.
An extensive analysis of two weeks worth of notes to an Internet self-help forum for depression found 1,863 notes posted by 533 members (Salem, Bogar & Reid, 1997). Notes were coded as to which of several categories they represented. "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)" (p. 198). About half the notes contained a message intended to help another member. Comparison to studies of similar f2f groups showed that 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 notes posted. Men participated, and self-disclosed, at the nearly same rate as women. The authors speculate that this is due to the predominance of male online in general. In just the two weeks that this group was studied, some members felt it had grown too big and started their own, more private, group. The ease with which email Internet groups can be formed makes this kind of splinter groups formation much more likely, and less disruptive, online than f2f. As with other studies that employed naturalistic observation, the researchers noted the need to take extra precautions in the manner with which they reported the contents of the notes, so as not to offend members that post very personal information in a public space.
Distribution lists (listserves) are venues where messages are distributed directly to each member's email box by the software used to run the list. The UseNet, accessible through the Internet, manages messages in "newsgroups" stored on-line for a period of time and accessible for others to read and respond to. By far the most extensive and complete analysis of online self-help groups is "Attraction to Computer Mediated Social Support" by Joseph Walther & Shawn Boyd. Walther and Boyd gathered data from 340 subjects who responded to a survey of UseNet support groups. The results of this study were revealing not only for the value that participants found online but also for what participants felt may be the disadvantages in face-to-face groups. "The first factor, which accounted for the greatest variance, combined items related to stigma management and objectivity. Items pertained to the potential for embarrassment if off-line acquaintances were to know of the user's concerns, and lesser degree of negative judgment offered by CMC partners than friends or family might make in relationship to the topic discussed on-line" (Walther, 1997 p. 16). This suggests that on-line self-help groups have as a primary benefit the advantage that members can be less concerned about the potential for embarrassment when they self-disclose on-line. It is also apparent from this finding that users of on-line self-help groups tend to be less concerned about being judged negatively by fellow members of their virtual online group, than they would be when discussing these matters with off-line friends and family. In fact, so comfortable are these venues for self-disclosure and intimacy, that there is a potential for participants to become actively engaged in their on-line relationships to the exclusion of all others (King, 1996b).
Self help, self organized groups are appealing to people that want to learn from, and share with, others who suffer as they do. This is true of the online groups as well. The survey data, combined with observations and case reports, indicated that members of online self help groups receive benefits that go beyond what f2f groups can offer. For members that participate actively, and don't just lurk, the data show an overall increase in self disclosure. This is consistent with the finding that virtual communities engender a disinhibiting effect. Text based social relationships are real to the people involved, and often result in an effort to meet f2f. The disadvantages (increased misunderstandings, projection and lack of boundaries) most likely cause members that are negatively effected to drop out, leaving the very satisfied and very involved members to answer the researchers questions. This self selection process occurs in f2f groups as well, but it is not known what percent of people try online self help and do not stick with it. An important and consistent finding is that members use self help online to supplement their f2f efforts at recovery from, or coping with, a mental health disorder.