Use of a Listserve for Information and Support in Families of Individuals with AS
Presentations at the 1st World Conference IASO - Tampere, Finland, 4-8 July, 2000
Presented by: Robin L. Alvares - Leigh Brezovsky, Department of Speech and Communication Studies Edinboro University of Pennsylvania Edinboro, Pennsylvania USA
B.F. Skinner once said that most great research ideas occur serendipitously. While I'm not sure this study may be considered "great", the idea occurred serendipitously. When I originally began to do research on Angelman syndrome about 4 years ago, it was suggested that I get on the listserve to get a better idea of what the issues were. After just a few months it became obvious that the listserve served an important function for caregivers of individuals with AS. In fact, I became more interested in family support function of the listserve than in AS itself. The present study is a pilot study looking at the use of the listserve for families of individuals with AS.
The proliferation of communication technology and the relative availability of equipment and services has led to a revolution in the way that we communicate. The study of communications sent via electronic mail, also known as Computer Mediated Communication (CMC) has become an area of study only within the last 10 years. Most of the research during the past 10 years has focused on business communications with some study of interpersonal communications. The use of e-mail in health care has been suggested and studied to a certain extent, however, many questions remain. As with many technological and scientific innovations, research on the sociologic implications of those innovations lag behind the advancement of technology.
As stated earlier, most of the research to date has focused on the role of e-mail communication in business and social communication. Researchers refer to this type of communication as Computer-Mediated Communication (CMC). Most of the researchers are specialists in communication who look at the theoretical implications of CMC versus Face-to-Face (FtoF) communication or Voice-to-Voice (VtoV) communication . In other words, what is different about the way we encode information in written form, particularly instant written form, as opposed to a face-to-face interaction or a telephone conversation, or even a letter sent via regular post (now known as "snail mail"). Let me give you a personal example that shows the differences between CMC and Face-to-Face or Voice-to-Voice communication.
Several months ago, while I was responding to an e-mail from a friend of mine who was having some problems at work. My brother, who has the same internet server as I, was also on line, and was able to interrupt and attempt to engage in a real-time interaction. I responded to him that I was in the middle of something and that I'd get back to him in about half an hour.
This was his response: "RUDE" What would that imply to you?
I was infuriated and let him know that I was furious that he was so self-centered and expected me to just drop everything to interact with him. I received a later e-mail message apologizing, saying that he was being sarcastic. However, this example shows some of the difficulties with CMC with respect to the difference between FtoF or VtoV communication:
- The use of capital letters implied emphasis, in this case, anger. Or at least I interpreted it as such.
- Lack of non-verbal cues. It was impossible to use non-verbal cues (intonation and facial expression) to indicate sarcasm.
Because of my level of communicative intimacy with by brother, I should have known he was teasing, and fortunately, we were able to resolve our misunderstanding. However, this example highlights the importance of studying CMC, particularly in user groups that deal with emotional and personal issues.
There are many other issues with respect to CMC and communication theory, and we are currently writing a grant, in collaboration with some of our colleagues, to look at this vast amount of data that we have. However, the clinical aspects of CMC which, though cannot be studied exclusive of the scientific study of CMC, are more relevant for our purposes here.
For this talk, we have focused on an aspect of CMC for which there has been little research: The use of the listserve for sharing of information and social support. As a clinician, I feel that the need is greater for understanding the role of CMC in providing support and information for caregivers for individuals with disabilities by providing them with a sense of community.
First, for those of you who don't know, what a listserve is, briefly, a listserve is a group of e-mail users who subscribe to a listserve. They send their messages (postings) to a central server. The server then sends the message to all individuals who have subscribed to the listserve. The person who co-ordinates the listserve is known as the systems coordinator.
We first studied the listserve in 1997. A graduate student of mine, Christy Miks, used descriptive techniques to exam listserve postings for a 1 month period (March, 1997). Communications were coded for content, audience and communicative intent (for example, asking a question versus commenting on a topic). A survey was also distributed via the listserve, to obtain consumer opinions and perceptions about the listserve. At that time, the listserve had approximately 300 members world-wide, most of whom were families of individuals with AS, though some professionals subscribed to the listserve as well.
For the last six months, we have been following the listserve which has grown to approximately 400 members. We have continued to code the information, however, the number of listserve postings have increased from approximately 300 per month to approximately 1000 per month. Consequently, we have not reviewed all of the data. However, we'd like to present some preliminary qualitative analyses of the two pilot studies.
Advantages of Listserve Communication for Families of Individuals with Angelman Syndrome
Time: Postings can be sent out at any time, increasing access for listserve subscribers. Responses were also received relatively quickly, and most responses occurred within 24 hours of a posting. Some responses were later depending on how frequently users checked their e-mail.
Image Management: While messages may be sent quickly, individuals are afforded the opportunity (though they don't always take it) to compose their thoughts. Unlike some spoken communication, individuals may edit the content of their messages prior to sending the messages.
Elimination of Physical Barriers to Interaction: Many individuals with family members with disabilities face the challenge finding and paying for qualified home care or the difficulty of transporting an individual with a physical disability. Additionally, many families of individuals with disabilities are running from appointment to appointment. The listserve allows the user to remain at home, or at work (most people subscribed from home computers), and yet still have access to support services.
Number of Interactants: Even if individuals do have an opportunity to attend some type of support group, the relatively low incidence of AS the disorder makes face-to-face somewhat impractical for individuals who are not in large urban areas. The listserve allows for interaction between participants from a wide geographic region. The reach of this listserve is literally world-wide, and there are participants from Finland, Spain, Germany, France, Ireland, Great Britain, Finland and Australia.
Sharing of AS-specific Information: Individuals were able to share personal experiences about a disorder for which there has been very little published research, especially with respect to behavioral assessment and intervention. There unique characteristics of individuals with AS which make their educational, vocational and social needs different from individuals with other disabilities, and listserve participants may address issues specific to their family member.
Access for Professionals: As stated before, there is relatively little published information on clinical interventions for individuals with AS. Many professionals are at a loss for effective treatments. Many have accessed the listserve to gain further information about treatments for the disorder.
Emotional/Social Support: All participants who responded to the 1997 survey felt that the listserve was essential in creating a sense of community - that they were not "alone". While there are many aspects of the listserve which merit further scientific investigation, the sense of community created by a listserve has the greatest implications for the importance of this technology. The sense of community created by the listserve is unlike which would be possible via any other medium. The proliferation of listserves points to their importance. There are innumerable listserves which serve a purpose similar to that of the AS listserve yet differ in emphasis and content. Among the listserves that I know of are listserves for families of police officers, users of augmentative communication devices, families of individuals with Down syndrome, autism and Fragile X, and for individuals with HIV just to name a few.
Other: Some of the other ways that the listserve has been used has been for political action, documentation/archival information, sociological analysis and dissemination of research instruments. For this conference, for example, questions about AS were solicited from families via the listserve, allowing greater access and participation to the proceedings of this conference.
The possibilities are endless and the potential of this technology is very encouraging. However, there are limitations of the technology which need to be understood so that the benefits may be optimized.
Limitations of listserves for Information and Social Support for Families of Individuals with AS
Access: While the number of individuals who have access to the internet continually increases, there are still many individuals who do not. Limitations include cost of equipment and internet access, computer phobia and training. One reason to pursue this line of research is to demonstrate the value of access to the listserve for individuals who would not normally have access. Potential avenues of support could include grants or tax exemptions for families of children with disabilities, support for the purchase of dedicated equipment or televisions with on-line capabilities, and the development of lending libraries and refurbishing and distribution of older equipment. In addition, resources would need to be provided for training and maintenance of the listserve. These types of activities are the types of activities that are often supported by private service organizations as well as publicly funded programs.
Lack of non-verbal cues: This is an area that has been most frequently addressed by CMC research - the difference between CMC and FtoF communication (or VtoV). On the survey, some participants remarked that they miss interpersonal contact of FtoF or even VtoV. Face-to-face contact is perceived of as "richer", "warmer" and "more personal" than CMC. Respondents to the survey also expressed that the lack of cues, especially intonation cues, led to misunderstanding. Some reported that it was difficult to determine if a posting were sincere or ironic (sarcastic).
As an aside, I have found that having student teachers and speech-language pathologists become aware of some of these issues helps them better understand the difficulties transitioning between written and spoken language for typically developing students and students with disabilities.
Language: The language of the internet is primarily English. Not only would that limit the number of participants on a listserve to those who were able to write in the language of the listserve, differences in language use and competency can lead to misinterpretation which may be rooted in cultural differences, even among speakers of the same language. Several months ago, two messages were posted in German to which no one replied, at least over the listserve. Surmounting this obstacle may be the greatest one faced by listserve users.
Cultural: Cultural issues go hand in language with language issues. Even among individuals with the same language, there are differences in both written and spoken communication with respect to vocabulary, topic, level of intimacy and self-revelation. On the survey, one individual from the UK remarked, "we Brits are more reserved." (Though there are other theorists that suggest that the relative anonymity of CMC allows for a greater level of self-disclosure than FtoF communication).
We have been monitoring the listserve for about 8 months now. One issue that has raised considerable difference of opinion, even within American users, is the posting of material that is of a religious nature, or, more recently, abortion. After considerable discussion among the participants, messages with religious content are labelled. In addition, the creation of a separate, religiously oriented listserve has been suggested.
Amount of information: As Leigh will attest to, the volume of information on this particular listserve is overwhelming. It is virtually impossible to read all of the postings, even if individually they are brief. There has been some monitoring among the users with respect to content. As communications researchers, it has been of interest to us to look at how individuals organize themselves and establish their own rules for participation.
Some of the Strategies used by Participants Include:
- Topic Labeling: Headings for postings generally labeled for content so that individuals may read and respond only to e-mails of particular interest. This has the greatest potential for assisting participants in decisions regarding whether they should read a posting or not. The topic and the content of the posting may differ, however, and the relationship between the title and topic needs to be further explored. Further, if an individual replies to a posting, the content of the reply may differ from the header of the reply.
- Identification of lengthy postings: Some individuals will indicate in the heading that the postings is "long" which alerts readers that the content may take them a while to read. One area to explore is how individuals make a decision as to whether their posting is long.
- Identification of postings for a specific audience: Items that pertain to individuals in a specific geographic region are often identified in the heading. For example, a picnic is being organized for Southern Ontario families and the heading was PICNIC FOR SOUTHERN ONTARIO FAMILIES. Individuals also use this type of posting if seeking services in a region or in the case of legislative issues. Postings to specific individuals that are not replies to posting discouraged.
- Digest: All postings for one day are placed in a single message or digest. While there is no loss of information, the number of items on the listserve are decreased.
Because of some of these issues, rules for use of the listserve have been established. These are known as "netiquette" (combination of English "net" and "etiquette"). As researchers, we are interested in how these rules are established and agreed upon by a group of users, and how these rules may differ between groups.
Accuracy of Information
While families of individuals of AS are for the most part much more knowledgeable about the disorder than many professionals, there is potential for dissemination of misinformation and potentially harmful information. Recently there have been postings recommending certain herbal preparations for various health and behavioral symptoms. While some of these substances may not have been harmful in and of themselves or in small doses, large doses could cause problems and interactions of chemical agents may not be clearly understood and are potentially dangerous.
Conclusion:
In conclusion, the information presented today indicates that there is a vast amount of research that needs to be done on listserves and other forms of CMC in the health care process. In addition to addressing issues raised in this presentation, further investigations may include, for example, the difference between real time communication on a computer (such as a "chat room") and a face-to-face group (such as a support group). It is only through a better understanding of this new media that it can be used effectively and for the greatest benefit for users.
Further study of listserves such as this has both scientific and clinical implications. Scientifically, communication, language, cultural and sociological information may all be gained from the listserve. In addition, the larger issue and one of greater importance here, is that the listserve may be one of the most efficient ways for caregivers of individuals with AS to gain emotional and information support. The limitations are few, and the potential is infinite.
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