DAVS

A model for dissemination of information about stuttering

by Tine Egebjerg, speech therapist and staff member, and Per F. Knudsen, psychologist and director

Presentation at the 2nd World Congress on Fluency, San Fransisco, august 1997

In Denmark the Counties and the municipalities, on behalf of the State, are responsible for the examination and treatment offered to people with various handicaps - among them stuttering.

Examination and treatment in Denmark are free and every stutterer has a right to receive treatment if he need it and want it.

The treatment of stuttering has for many years been decentralized to speech therapists in the counties for adults and in the municipalities for children.

The education in speech pathology takes place at the Royal Danish School for Educational Studies and the University of Copenhagen. Unfortunately stuttering has a very small place in the study of speech pathology.

This factor, together with the fact that many speech therapist treat very few stutterers per year, often results in lack of knowledge and experiences - and also in a big difference from place to place in the quality of treatment offered.

No institutions has it as an aim to give the speech therapists special training in fluency disorders. And there is no places where speech therapists can be supervised if they have problems with treating a stutterer.

Furthermore no institution has been given the task to pass on knowledge about stuttering and stutterers, to the public in general, to public institutions, to semiprofessionals such as pediatricians, visiting nurses, preschool teachers and teachers, to associations or ministries.

All this means that too little has been done nationwide in the stuttering area during the last many years resulting in a lack of knowledge amongst both stutterers, professionals, semiprofessionals and in society in general. - And that is also the case for other areas in the handicap field.

In 1993 the Ministry of Social Affairs therefore wanted to establish information centers in specific areas in the handicap field - areas with a strong need for knowledge and dissemination of information. The centers should collect, adapt, develop and disseminate information about the actual handicap.

That's part of the background for establishing The Stuttering Information Center of Denmark.

The center started January 1, 1994. It is nationwide and have a yearly budget on approximately 225.000 US$, paid by the Ministry of Social Affairs.

In the following we will present our 'model for dissemination of information about stuttering' and tell you a little about how we have approached the task of being a stuttering information center. We will also show you some examples from our work.
 

The Model

This overhead shows The Stuttering Information Center of Denmark and the flow of information from different sources through the center to the recipients of the information.

As we will show you in a minute, we get information from many different sources and by very different means.

At the center we adapt and systematize the information. In some cases when information is not available we also develop information ourselves.

All the information we gather is in principle available for all categories of recipients. By different means - and by adjustment of the information level to suite the specific target groups - we provide the recipients with information about stuttering.

When we go through the model we will ask you to bear in mind, that the work of the center mostly is a dynamic process were information retrieval is mixed with adaptation and developing information, and with dissemination of information. So when we present the next overheads, please think of the work at the center as a dynamic interaction with a lot of sources, means and recipients involved.
 

The Center

This overhead tells you about the center.

The center has a superior management in the shape of a Board with representatives for the stutterers, the professionals and the educational interest - this group also serves as a background group for the staff.

Furthermore there is a much larger liaison committee consisting of people from different institutions with a special interest in stuttering - the staff of the center must report to this group of people once every year about the work that have been done and the plans for the coming year.

We are 3 people employed at the center. A director, a professional staffmember, and a secretary. At the moment this means that there is an educated psychologist, Per, who is the director and a speech therapist, Tine who is the staffmember and the secretary who is educated clerk and a very important staffmember - situated in the heart of the center.
 

User-conferences

From the beginning it was clear to us, that we should take care not to become an "ivory tower", so we invited stutterers, parents, speech therapists and psychologists to what we call an "user conference" to discuss ideas and suggestions of what they found important for us to work with.

This was a very important move, partly because we showed that we wanted to be an equal part in the field of stuttering, and partly because the users experienced they had an influence on the activities of the center.

Approximately one year later we repeated the "user conference" to continue the discussion with the users of the center.

The "user conferences" has shown to be very successful, the center benefit a lot from the many stutterers and professionals knowledge, experiences, and many good ideas. For instance is the translation of a very popular Danish booklet to parents of preschool children who stutter into bosnian serbian, Turkish and urdu and the working groups for professionals managed and runned by the center examples of the good collaboration - so in 2 months from now we have planned a new "user conference", which we also expect much input from.
 

Databases and the Library

All along we have established and developed databases, for instance a database with - for us - important names, addresses and institutions, a database for applications, and a database for literature. And we have build up an internal library which is open for students, speech therapists and others interested.

Using the databases and the internal library, we adapt and systematize the information we get from the many sources, so we're able to find specific knowledge and provide the users of the center with the information in demand.
 

Network and workgroups

Around the center we have established different groups and networks, which in different ways support the center or profit from the work in the center.

We have for instance established a network with trained speech therapists and psychologist in every County in Denmark so that local speech therapists or parents who phone us for advice can get in touch with a specialist who knows about the possibilities in their neighborhood.

The workgroups mentioned earlier are open for all professionals working in the field. We have a workgroup for psychologists who work with stutterers, a workgroup for speech therapists who work with adult stutterers, and a group for speech therapists who work with school age children.

The aim for the workgroups is to bring professionals together to discuss different problems and subjects. The groups meets twice a year.

The work in the groups also serves as a mean to build up more knowledge about stuttering and stuttering treatment among the participants in order to build up their professional skills. In addition to this the groups have an obligation to inform colleagues of their work. And it is of course our hope that stutterers receiving treatment will benefit from this sharing of knowledge and experiences among professionals.
 

Projects

At this point we will mention the case when information is developed in the center by the permanent staff alone or in corporation with a skilled person employed for a period.

We do this when we need knowledge in connection with specific subjects and well-defined target groups.

For instance we started out by making an inquiry about the level of the knowledge and the treatment of stuttering given by speech therapists in Denmark, for among others to find out who need more knowledge, and what kind of knowledge do they need.

One project dealt with stuttering and employment, another with stuttering in school and education.

We have also made a project about dissemination of information about stuttering to visiting nurses, child-minders and preschool teachers.

And for the moment we are working together with some speech therapists in a project about measuring efficacy of stuttering treatment given to preeschool children.
 

Dissemination of information

The main purpose of the center is dissemination of information. We have different target groups and we uses different kind of means to reach the target groups.

The target groups consist of multiple recipients. We have listed the recipients and the different means on the following overhead:

Newsletter

We send the newsletter free of charge to all the local offices and institutions where speech therapists works. Besides this anybody interested (both professionals, semiprofessionals, consumers and others) can free of charge receive our newsletter.

The newsletter is a very important part of the dissemination of information. Partly because the content of the newsletter is very relevant for the recipients, partly because it comes regularly (4 times a year) and therefor keeps the recipients notified about different stuttering events. The content can be information about workshops, news from the workgroups, a list of national and international workshops and conferences, interviews, book reviews and review of Journal of Fluency Disorders.
 

Leaflets

Our first leaflet was a general information about stuttering as a communication problem, information about treatment and where to get treatment. It was distributed free of charge to all institutions which treat children and adults, who stutter and to pharmacies and libraries all over the country.

Since then two more leaflets have been elaborated in connection with projects, namely a leaflet about stuttering and employment and a leaflet about stuttering in school and education.

A fourth leaflet about stuttering in small children is in course of preparation in connection with our latest project dealing with dissemination of information about stuttering to visiting nurses, child-minders and preschool teachers.

Other means to reach the professionals are workshops, 1-day conferences, booklets, articles, telephone contact and e-mail.
 

Means to reach the "semiprofessionals"

The means to reach the semi-professionals is mostly leaflets, booklets, articles, 1-day conferences and telephone. These recipients are very important, because they often are the first "professional" persons who parents talk to about their concerns when their child stutter. So we put much effort in educating the "semi-professionals" in stuttering issues.

The means to reach the other recipients is mainly leaflets, articles, the media, and telephone service - answering questions of all kinds.

Two ways of passing on information
You can say, that we have two ways of passing on information: in the first way we have the lead. Here we inform about stuttering issues by newsletters, booklets, articles and so on. The receivers of this information haven't directly asked for information at this certain moment - we just provide them with it because we think they may need it or want it. In the second way the recipient have the lead. They call us by phone and ask for information or help about a specific problem. And we provide them with the information we have or help we can give - or we refer to others. In some periods one way of passing on information is more common than the other.
 

Information retrieval

All the information we adapt and systematize and pass on to the various recipients comes from many sources and comes to us by many different means.

The sources of information are listed on the following overhead:

The professionals provide us with information about theory, treatment experiences, results of research, and other information about stuttering. Stuttering associations, adult stutterers and parents provide us with general information about stuttering, with their own stuttering experiences and with information about problems they face when they seek help, apply for a job and so on. Ministries provide us with information about laws and rules which effect stutterers. Other handicap organizations and information centers provide us with information about other handicaps, also in cases where a possible relationship exists between stuttering and the other handicap, like dyslexia, asthma and others.

We get the information from the sources through different means. The means are also listed on the overhead.

We get the most of the information by reading articles from journals, books, proceedings, e-mail from stutt-l, bulletins, and so on. We also get much information from participating in workshops and conferences. When we do projects we also get information by interviews and questionnaires. Sometimes we get information through personal inquiries. And sometimes we phone, e-mail or fax to a specific person or a specific discussion list to get information we can't find in another way. Here we can say that especially the stutt-l has been very useful for us.
 

In Conclusion

The model for dissemination of information about stuttering we have shown has proved to be very successful. We have got many positive reactions and a good feedback on the work we do. We have been told, that the Stuttering Information Center of Denmark is the best thing which have happen for the stuttering field in Denmark. Of course we are very proud of these reactions and the feedback we have received.

If we as a conclusion on this presentation in a brief way should try to say, why the center has been a succes, it must be, that we

We hope we have been able to give you an impression of The Stuttering Information Center of Denmark and our model for disseminating information about stuttering in this brief way. 


© Dansk Videnscenter for Stammen, email: davs@dlh.dk