Online communities for information exchange and peer support : a case study

Abstract

When their son was born prematurely, a Melbourne couple looked in vain for the advice and support that they needed. Neither hospital staff, nor professional support staff could provide the sort of information and interaction they wanted. A year after these traumas, they established a mailing list as a place where parents in their situation could offer support and advice.

The list has been a huge success. Its archives are now more than 120 megabytes in size, it has many hundred members from around the world, at least two North American hospitals make access available to parents in the NICU parents rooms. The list has spawned a more social discussion forum, where mothers hold virtual "baby showers", and a number of electronically distributed print on demand publications, including a monthly newsletter with a global editorial panel.

The list shows the enormous potential of the medium, as an engine for empowerment, information exchange and knowledge creation. It has not all been plain sailing however, and this paper explores the growth, the dynamics and the dilemmas of list owning. It describes the dangers, the obstacles and the challenges of building a virtual community, offers practical advice, and makes a plea for public access internet providers to make allowance for the "read/write" interactive nature of participation in this very valuable form of information exchange

An unexpected premature birth is a dislocating experience. For us, the birth of Vincent three months before his due date made the very ground we stood on seem uncertain. We divided our time between a ghastly parody of our former life and the sci-fi world of a neonatal intensive care unit. True support and advice were in very short supply. The nursing and medical staff of Vincent's NICU were briskly occupied in the often dramatic care of their patients. The neonatologists gave us several interviews conducted with the utmost gravity of demeanour. The unit's social worker looked out for signs of postnatal psychosis. And our family kept well clear of what looked to be a very bad news.

At night, it was difficult to relax. Television was never more repulsive and irrelevant. We screened all our phone calls and answered very few, finding that callers wanted either to give us a blast of good cheer or to have us comfort them. We quickly discoved that replacing the phone line with a modem line gave us some much needed space, and Netscape gave a kind of soothing abstract comfort. We found breastfeeding discussion lists where the experts gave pointers on expressing milk, and baby focussed newsgroups where people who sounded nice shared the difficulties of shampooing toddler's hair, and potty training. All this was more comforting than you'd expect after a hard day in the real world, given that no-one in the real world had a clue about what to say to us.

One night we posted a message to Miscellaneous Kids, a very popular generic newsgroup. Our message went something like, "Parents of 27 week baby desperate for information", and this slotted in nicely between the two year olds eating cat food and the tantrums in the supermarket. But people were quick to respond, posting advice back to the newsgroup and mailing us personally. We corresponded daily with about half a dozen people who'd also had premature babies of various ages. The relief of sharing this experience with people further down the track was unimaginable. And no-one said to us, "Oh, he'll be right. Just you wait and see!"

Throughout Vincent's first year, we struggled along with the realities of caring for a fragile baby and a three year old, and setting up an ambitious project called VICNET. It's surprising how many people presume we named Vincent after VICNET. It's very easy to make the typing error that turns one into the other, and perhaps this is a fair symbol of our blurred and sometimes overlapping preoccupations this first year.

When Vincent's first birthday came round, it started to look like everything might be alright after all. We decided to celebrate by creating a home page for him. We told his story quite simply, and asked other parents to contact us to exchange information. And they did, in droves. People were interested in Vincent, asked if we knew anything about various consequences of prematurity, wrote simply to say he was a beautiful baby and to wish us luck. Our internet experience began to have a social focus. It soon became clear to us that the people who were writing to us could also be talking to each other, that our interactions could be richer and more complex.

In late January 1996, we set up our new prematurity mailing list. Tossing about ideas for a name for the list, we came up with Preemie-list believing that this spelling was in international usage. It wasn't at the time but is now. We advertised the new list on some of the newsgroups and waited to see what would happen. Some weeks later, after checking our mail each day to find that no-one had written, we checked to see if anyone had subscribed. We found eight subscribers all waiting for something to happen. The anticipation was broken at this point by our first message to the group from a woman in the States, "Let's get this list going! There's so much I want to talk about!"

Every other subscriber responded, and from this point on most people responded to most messages. The discussion was very lively, ripping straight into the horrors and highpoints of our shared experience. New members sent in introductions, describing briefly or otherwise their personal experience with prematurity and the burning issues for them. Each new person was welcomed by other members, and all issues were taken up for discussion by the group. At the end of the first month there were twenty members, each with a great deal to say. It truly seemed like the torrential breaking of a drought.

We established a Families on Preemie-l page to keep all the introductions. There are several hundred stories there now and they represent a wide range of experience within the common boundaries of prematurity. Imagine what this must look like to someone who has suddenly become a "stranger in a strange land" through the experience of premature birth. One of the great healing values of Preemie-l is that finding other people who share the experience helps to normalise the experience, and reduces the feelings of shock and denial that can accompany the crisis of prematurity.

Some months after the mailing list began, we also saw the need for a more informal means of communication . Some families who had babies still very sick in hospital found the mail volume overwhelming but still wanted to be able to check in from time to time. At this point, Vicnet had begun the process of helping public libraries to provide public access web browsers. We could see the value in providing a Preemie-l bulletin board which people could use independently of personal email accounts. We imagined that families with premature babies could use public libraries to access the Preemie-l bulletin board. We also hoped that hospitals with neonatal intensive care facilities would provide a computer in their Family Rooms so that people could browse for information and social support. This would help to break the monotony and stress of spending long hours in the NICU. One Australian hospital and two that we know of in America have taken up this idea, so far.

One of the concerns that hospital administrators seem to have is that people looking for information will be at the mercy of amateurish, if not shonky, advice. Another concern is that browsing might encourage a kind of dangerous half knowledge that will cause parents to become a major nuisance on the wards. Our experience with Preemie-l has been that families are initially desperate for more information about what is happening to them and their children., the "NICU roller - coaster" as it is commonly called. They are looking for survivors of the experience to tell them that they too will survive. They are looking for recognition of the realities of their experience. They are looking for others who want to talk about the specifics or generalities of premature birth They have a great deal to say and need to know that they are being heard by others who understand them. Most of this can be called social support.

Questions about the medical condition of prematurity are common. Families with a baby in intensive care are usually faced with very summary information about the kinds of things that are routine or at least predictable in their baby's hospital course. Many of the conditions are known by acronyms. The more premature the baby, the more acronyms are likely to afflict them. Most parents want to know more. What they would really like is hours a day of the neonatologists' time to explain everything they need to know, and what this might mean for the future. Parents don't want to take snippets of information on trust, although they trust the medical staff. They want to demystify the acronyms and acquaint themselves with possible outcomes. Even very frightening medical conditions are less frightening once the boundaries can be more or less established.

So what kind of medical information are parents on Preemie-l passing around and what kind of safeguards are there to prevent misinformation? We believe that the size and composition of the group provides a system of checks and balances. It helps to have neonatologists and NICU nursing staff on the list. These people are generally members of Preemie-l because they want to learn more about parent perspectives. Many of the parents are also extremely well informed about the issues and language of prematurity. We all enjoyed the joke recently when one member was asked by her G.P. to speak in plain English.

If someone posts a medical enquiry to the list, people who have experience in this area will respond. If something is said that is wrong or exaggerated, others will quickly step in to correct the information. Rather than disseminating half-truths, the list seems to provide opportunity to clear up misunderstanding. People's dark fears about aspects of their children's medical conditions, for example, or treatments they may have been subject to during the hospital period can be discussed in a knowledgeable but friendly environment.

There's no doubt that Preemie-l has been a very positive experience for many of its members, including ourselves. But managing such a large, and sometimes emotional list has not been all plain sailing. In the early months of Preemie-l, members had a number of suggestions for ground rules that would help to keep the list specific, and useful to as many people as possible. We reached our official ground rules through consensus, posted them on the home page and felt really well organised.

We had no idea that our small community would continue to grow at such a pace. We had 20 members the first month, 200 by the end of the year and more than 400 by our second birthday. The common understanding we began with has been stretched by a tremendous range of opinions and experience. As a community we incorporate families with healthy babies and families with severely disabled children, parents enraged by what has happened to them and parents who are ecstatic to have any baby at all. Pro-lifers must share space with parents who have had to "pull the plug" on their babies, sometimes literally.

The three ground rules we began with have evolved into a 10K home page, covering most conceivable aspects of conscientious netiquette. Unexpected listowning issues continue to crop up. Preemie-l members have published a number of resources based on mailing list discussions. We ran into a flame war over who could publish shared material. This has been settled by a statement that all material on the Preemie-l web site, which includes the archives and Families page is copyright to the author, and that the author's permission must be sought before the material is published.

Preemie-l now produces a newsletter every two months. The newsletter, called The Early Edition, contains highlights of some of the discussions, as well as purpose written articles on breastfeeding issues, fathers' perspectives, the emotional and psychological aspects of prematurity, and practical advice about some of the trappings required by premature babies. It is our hope that The Early Edition will reach those families who don't have email or internet access.

As a community, our hopes for the future include a conference in Detroit planned for July. An important goal is to see the family rooms of neonatal intensive care units provide computer access for parents who often spend long hours in the hospital with very little to encourage or distract them from their individual situation. Computers in the breastpumping rooms would be a wonderful way to relieve the tedium of this necessary task. The group once nominated the invention we'd most like to see as a computer with a breastpump attachment.

As Australians, we'd like to see many more Australians using Preemie-l and getting the benefit of our work. We'd like to know that Australian neonatologists and medical staff are interested in hearing what parents have to say and contributing to those discussions. We'd like to see Maternal and Child Health nurses with basic browsing skills able to help the mothers of premature babies who come to them to find online resources such as the Preemie-l bulletin board.

Like most of the other list members, we have found the list to be unparalleled as a source of information about the topic, and a profoundly enriching and healing experience. As a group we have given each other emotional support in ways which only people who have "been there" could do. We have supported individual members through battles with their inlaws and with the medical profession, we have empowered our members in their dealings with hospitals over access to their children's medical records, We have raised our awareness of the seemingly endless detail of caring for these special children.

The "spin offs" from this process - the web site, the newsletter and the archives, are good sources, but without the participation and the interaction they seem to us less vivid, as a literally vital dimension has been left out. Mindful of the importance of this dimension, we'd argue very strongly that organisations (like libraries) that provide public access to the internet should resist the temptation to restrict the communications functions of their terminals. What we really need are proactive training sessions which teach people how best to participate, how to use email and how to set up and manage discussion lists.

We'd like to think that Preemie-l is a model which might be applicable to other community groups. The skills required to maintain it are not great - all you need to do is add time. We'd be happy to talk to anybody about the mechanics of this. Good luck!

annec@vicnet.net.au
garyh@vicnet.net.au