The magazine of the Melbourne PC User Group Online Support Groups Monika Merkes monika@melbpc.org.au

Jack in Utah, To: All

My son recently strangled himself trying to make a Halloween haunted house in our garage. I'm not all that sure that I can talk about this here, so don't be surprised if I disappear. I'm having a hard time typing. I look at the screen and see my son dying. No one knows exactly what happened, but my brain has made up a scene that keeps flashing into my mind. I had never let myself realise just how much I loved him, and now he's gone. I never ever would have thought that this could hurt so much, or that I would miss him so badly. My wife and I have been seeing a therapist and from what she says, after almost three weeks, we may still be operating in shock and this could get worse before it gets better. I'd like some insight into this shock business: how do you know if you are in shock, how do you know if it's wearing off, and what does it feel like when it does wear off? We've been told to take it easy and let this go at it's own pace, but I can't help wondering if there isn't there something I can do to speed up the process? Any help would be much appreciated.
 
Jack received several dozen responses over the next 48 hours, all with high levels of empathy and understanding. The members of this online support group were all active participants because they were currently dealing with similar issues.
 
The issues that online support groups, or self-help groups, deal with range from "Abuse Recovery" to "Xeroderma Pigmentosum" - the list is extensive and growing. Online support groups operate in real time (synchronous ) or through newsgroups and e-mail lists (asynchronous). In synchronous groups members are interactive and correspond anonymously using text-based communication. These groups meet at a scheduled time to encourage consistent participation and convene for one hour on average. The use of emoticons is common.

In asynchronous groups members post messages and questions around the clock in newsgroups or e-mail lists to a specific member or to the general membership. Sometimes, groups have hosts or moderators who may be health professionals. Their role is that of a resource person rather than an online counsellor. They assist members in expressing feelings and make referrals to helplines, face-to-face (f2f) self-help groups or local counselling services. Some groups include health professionals in their membership. These "experts" provide advice, but participation in an online support group also helps them to gain a better under-standing of the physical, emotional and spiritual needs of people who might be their patients or clients.

Why would people seek support in a chat room or a newsgroup on the Internet? Online support groups can reduce the sense of isolation for people who live in remote areas, are house-bound, need additional support between f2f support groups or counselling, or those who seek anonymity. Online groups can also give people the privacy to seek support and information about behaviour or an illness that might be perceived as a stigma and thereby become a barrier to seeking counselling and/or information.

A U.S. study found that support seeking was highest for diseases viewed as most stigmatising, including alcoholism, AIDS, breast cancer and anorexia. Support seeking was lowest for less embarrassing but equally devastating disorders, such as heart disease, hypertension, migraine, ulcer and chronic pain. The study found also that 60% of groups describing themselves as self-help were moderated.

Online support groups have their limitations. Feedback may be unsatisfactory, and the lack of f2f contact obscures vocal intonations and verbal and non-verbal cues such as body language. If a person is experiencing an emotional crisis, the lack of identifying information can make assessment and referral difficult for the group moderator. In unmoderated groups, the responses of other group members, or the lack of responses, may exacerbate the situation. There is a high turnover in some groups, which can make it difficult to develop online relationships between members.

People with language limitations may be frustrated by text-based communication and the rapid pace of the interaction. Although not common, there are people who enjoy a hoax or make hurtful comments. 
The quality of information provided in online self-help groups varies, as does the perception of what constitutes good quality information. There are individuals and organisations that monitor such groups, and give awards to the best groups in their area of concern. Some people suggest that the best way to get good information is to post bad information and wait for the corrections to come in. As with any information found on the Internet, it makes sense to check with other sources.

Reprinted from the November 2001 issue of PC Update, the magazine of Melbourne PC User Group, Australia

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