The main findings of this study were that 1) subscribers to both internet lists found them helpful in terms of feeling supported and in obtaining information, and 2) the different approaches to TTM on the two lists were associated with differences in treatments attempted by participants.
Respondents noted in their comments that a great deal of the information provided was useful, as it came from people dealing with the same problem. They also found it useful to interact frequently with someone who had experienced their problem. The internet support groups were helpful in terms of learning about the symptoms and treatment of TTM, tips on how to decrease hair pulling, and in giving a name to their hair-pulling problem. Only a small number of members reported in their comments that their symptoms increased when reading the messages posted on the support group.
Consistent with this positive experience the majority of subscribers were members for more than a year, read and/or responded to messages posted by members once a day or weekly, and spent approximately one to two hours per week making use of the support group. It is notable that many sufferers had not sought professional help, had discontinued treatment, or had not discussed symptoms with family or friends. Indeed, subjects reported having received inadequate information and advice from professionals.
Differences in the apparent content of the two support groups did seem to impact on attempted treatments. The TTM Telemailer subscribers found the support group very helpful in terms of learning about the John Kender Diet, while both support group subscribers found the groups somewhat helpful in learning about the Fish Oil Diet. This may indicate the influence the list-owner has regarding information provided and topics under discussion, as well as attitudes of members towards certain forms of treatments.
Most subscribers had not followed either of these diets or had not achieved good results with them. Nevertheless, people did not feel misled by information, and they continued to participate in the groups. Indeed, members of TTM Telemailer had been subscribers for a longer period than those to Trichees Yahoogroup, suggesting that the former had a longer lasting influence, or alternatively, that people interested in particular nutrition-based interventions were more likely to find this list and to remain subscribers.
Perceived problems related to the support groups included the tediousness of reading and/or responding to large numbers of messages, the abrupt loss of discussion threads when a subscriber suddenly quit the mailing list, the deviation of the discussion away from problems related to TTM, or disagreements with the other subscribers or the list owner's viewpoint. In both groups, English is the language used and this might be difficult for people with English as their second or third language. Another problem mentioned was that members can have different expectations from the support groups, i.e. as a group providing support, as a forum to discuss issues, or as a place to gain information about TTM and recent research.
There are several limitations to the data presented here. First, the sample was a convenience sample; it represents participants who chose not only to continue to participate in the list, but also to answer the questionnaire. Indeed, there was a low response rate, although this might be an underestimation given that not all of the participants in the groups were in fact active members at the time of the study. Second, the survey was not comprised of standardized rating scales, and the extent to which self-report data collected is reliable or valid is unknown. For example, while it seems safe to assume that many participants in the groups had hair pulling, we are unable to confirm that a diagnosis of trichotillomania was in fact present. Possible bias in the survey is compounded by the cross-sectional rather than longitudinal design; there may well be a disjunction between perceived increase or decrease in hair pulling during participation in the survey, and actual changes in symptoms. Participants in the groups have some level of computer literacy, knowledge about how and where to search for the internet support groups, as well as access to a computer and the internet; and the data cannot necessarily be extrapolated to other groups of people with trichotillomania. Nevertheless, membership of the support groups was similar to that described in the clinical literature on hair pulling, i.e. mostly young females [8