Videnscentret for Døvblindblevne

Awareness Raising and Information of Non-specialists Regarding Acquired Deafblindness

Workshop presentation given at the world conference on deafblindness, Lisbon, Portugal, July 1999, by Ole E. Mortensen, Information Center for Acquired Deafblindness

Introduction

This workshop is about awareness raising and information of non-specialists regarding acquired deafblindness. A very long title and a very big subject for a short workshop!

In my presentation for this workshop I will present one way of raising awareness and giving information to non-specialists. I will be talking about two examples of information about acquired deafblindness that we have given to non-specialists in Denmark. Naturally there are other things to say about this subject, but this is what I have chosen to focus on in my presentation.

When I say "we" I mean The Information Center for Acquired Deafblindness, where I work. The purpose of our center is to give information about acquired deafblindness to professionals, institutions, organisations, deafblind people and their families and others who might need this information. You can read more about our center in this presentation folder. We only work with acquired deafblindness, that is people who are not born with their vision and hearing impairment. Therefore when I talk about deafblind people in my presentation, I mean people with acquired deafblindness.

Now, let us be clear about who we mean when we say "non-specialists". This term can be used about a great number of people. In this presentation I focus on the professionals who get in some kind of contact with elderly with acquired deafblindness, but who don't know much (or anything) about deafblindness and maybe even aren't aware that such a condition exists. They may be home helpers, nurses, vision rehabilitation workers, hearing rehabilitation workers, social workers, staff at homes for the elderly and others who work with elderly people.

It is almost impossible to get these people together to give them actual training and education in deafblindness. These professionals live and work many different places, there are too many of them, and deafblind people are a too small part of their work – it is simply too expensive for their employers.

Therefore the way to reach this group of professionals is through information. The aims of this information for this group may be:

  • Raise awareness
  • Provide background information
  • Provide practical skills
  • Make changes in receiver's approach to working with deafblind people
  • Show how to access specialists
  • But not to make receiver a specialist

Raising awareness is a very important point here. You could say that awareness is the precondition for giving the right and adequate service to deafblind people. If the professional is not aware that this person is deafblind, then he will not treat the person as a deafblind person and follow the guidelines and advice for working with deafblind persons. And the deafblind person will not get the help that he needs as a deafblind person.

We probably all know of examples, where a deafblind person – a person with both a hearing impairment and a vision impairment – is one day treated as a hearing impaired person (for instance when he is in contact with the hearing rehabilitation system). And the next day he is treated as a vision impaired person (for instance when he is in contact with the vision rehabilitation system). It is important that professionals who are not specialists in deafblindness become aware that there are some people who have both a vision and a hearing impairment, so that they will recognise these deafblind people when they meet them. And by that be able to give the right service and assistance.

In this presentation I will use two examples from our work at the Information Center in Denmark. They are two booklets. One is called "When Vision and Hearing Fail" and the other is called "Good Communication with patients who have impaired vision and/or hearing".

"When Vision and Hearing Fail" was directed to home helpers, nurses and other staff that work with elderly people with a vision impairment, a hearing impairment or a combination of both – including deafblind people. Home helpers and nurses who work in the homes of elderly people get in contact with many elderly people in their work – also elderly deafblind people – but most of them don't know anything about deafblindness or what it means, or how to interact with people who are deafblind.

"Good Communication with patients who have impaired vision and/or hearing" was directed at staff at hospitals, which might get into contact with patients with a hearing and/or vision impairment. A lot of people go to hospitals, and deafblind people are no exception. Especially elderly people go to the hospital, and of course we know that there are some elderly people, who have a combination of a vision and hearing impairment. It is very important for them that the staff at the hospitals are able to follow some guidelines – most importantly about communication – so that the stay at the hospital does not get a worse experience than it has to be. But of course it is never a pleasant experience to go to the hospital.

As you notice both of these booklets are about people with a hearing and/or vision impairment and not only deafblind people. This is a very central point for us as I will get back to.

The process of information

The process of information can be viewed like this (in a simple illustration). These are the stages that the receiver must go through in order for the information to be a success. Or in other words, these are the stages where the information can go wrong and make you miss your point.

  • Contact
  • Attention
  • Motivation
  • Understanding the information
  • Memorizing (saving) the information
  • Changing or strengthening of action (EFFECT)

I will now explain this list a little further and use it to give you an idea of how we tried to give information and raise awareness in these two instances.

Contact

First of all your audience must come in contact with the information. This is very simple and basic, but it is an important point that has to be carefully considered. If they don't get in contact with the information, it doesn't matter how well it has been planned and produced.

If it is printed material – as in these cases – we must consider how to put it into the hands of the receiver. By mail directly to him? By having someone give it to him? By having him order it from you? By making him pick it up somewhere?

Can we make the receiver active in getting the material by ordering it himself? If he hears/reads about our interesting material and decides to order it, he will be active in getting exposed to the material, which will make him more alert to it when it arrives, and help us in getting his attention.

The booklet "When Vision and Hearing Fail" was sent to the directors of all the local social service departments in Denmark (about 275). It was sent by the organisation of municipalities with a letter asking the directors to pass it on to the heads of the home care service. They handed it to the home helpers with a request that they read it. This helps attention very much, when the material is given to the receiver by someone he trusts or who is in the position to order him to read it. Just that fact that it comes from a side where you are used to expecting interesting and relevant information make the receiver expect something interesting and relevant.

The booklet "Good communication…" was sent to all hospitals by the National Association of County Councils with the request that is was handed out on all wards of the hospital.

So in both these cases the material was sent out by an organisation, that is considered reliable to the top of the local system.

Attention

When we have made sure that our target audience will get in contact with the material, the next important step is to make him pay attention to it. We all know that it is possible to see something and not pay any attention to it. Seeing isn't the same as noticing.

We live in a society with a great information overload. We are exposed to so much information, that it is impossible to pay attention to it all. We therefore choose among the offers for information as receivers. As senders it means that our information is in great competition with other information products.

This is especially true for a target audience such as our non-specialist, who don't know much about deafblindness or even is aware of its existence. This means that they don't realise that there are things that they need to know. They have no prior interest in the subject. This makes them harder to get in touch with.

So we have to get their attention to make them willing to invest time and mental resources in our information.

If their superior gives it to them and asks them to read it, we can hope that this is enough to make them pay attention to it and actually start reading it.

But what else makes people interested? Well, if we don't trust their interest in elderly deafblindness to be enough, we must make our information interesting and appealing in another way.

One way is to make it stand out. If it is a booklet or a folder that we are exposing the target audience to, one solution might be to make the cover interesting in format, colour, layout etc.

The appealing look of printed material may also be important in another way apart from getting the readers attention. If the look of the information material generates a positive feeling in the receiver this attitude will stay while beginning to read the text. This makes the receiver ready to invest time and mental resources into understanding the text.

And if it looks professional the reader may be more likely to believe that the contents is at a professional level as well – and is worth reading.

With this we go into the third stage:

Motivation

Our receiver has come in contact with the material. It has caught his attention. Now he opens the material and starts to read the text. If the text isn't able to keep his attention and motivation, he will put it aside – and that is the end of that.

Communication research during the last 15 to 20 years has shown that the receiver in the communication process is playing much more active part than we believed earlier. It is his interests and knowledge that controls what he receives.

If the receiver of our information material doesn't believe that reading the text will have a positive result in the end, he won't read it. One such positive result for this kind of information would be that he finds it relevant and useful for him in his work.

Now, we know that our information about elderly deafblind people is very relevant for our target audience – although they don't know it yet themselves. We must therefore try and convince our receiver that this is relevant for him – believe it or not. And we must do so fast, so that he will choose to read the material.

In these two information booklets the target group come in contact with many people, and only very few of them are deafblind. But we want them to read our information material anyway, because it contains information that we know is important for them.

So how do we make information about a very small group seem so important to these professionals, that they will want to read it and use the advice in their daily work?

In other words: How do we provide information at a national level about a group consisiting of maybe 1100 people (those who have a serious vision and hearing impairment – deafblind)?

The answer is: We probably don't! It is probably impossible. BUT if we make information material that has to do with also the hearing impaired and the vision impaired it now covers more than 500.000 people in Denmark! And when you think that more than half of all elderly people have a vision or hearing impairment, our information is now relevant for a very big group.

Let's look at some demographic information about Denmark:

  • Population: 5.000.000
  • Population over 67 years: 700.000
  • People with acquired deafblindness: 1100
  • People with acquired deafblindness over 67 years: 900
  • People with hearing or vision impairment: 500.000
  • People with hearing or vision impairment over 67 years: 350.000

So by reading the material they will get information about a very large group, including the very small group of deafblind people. And we of course are so lucky, that the information about the other two groups – the hearing impaired and the vision impaired – also is relevant for understanding the situation for those who have both impairments. So it actually helps the information about deafblindness to also give information about hearing impairments and vision impairments. The problem of this, of course, is that our small group may "drown" in the information about the two larger groups, and not be noticed very much.

When you read the material you will see how we put information about all three groups into one publication (unfortunately it is only available in English and Danish).

The next step:

Understanding the information

Communication research during the last 15 to 20 years shows that it is the receiver who decides what he receives. It is his prior knowledge and resources that form the basis for his understanding. Two persons who watch the sam TV program don't actually see the same program. There is a difference in what they make of it. Most often not a very big difference, but still a difference. The more new and complex the information is, the more difference will there be in what different receivers make of it. We can just think of the plenaries that we have listened to until now. We have all listened to the same words, but we have made different understanding of it.

The advice in these two publications is very practical. There is nothing new or sensational about it. It is based on the work experience that these professionals all share, and it is knowledge that they may already have. The purpose of the publications is to bring it forward in their memory and make them aware of it. It is advice like the following:

Be visible – be audible. Say something, sing to yourself or walk heavily from one room to another. That way the person can follow where you are through vision, sound or vibrations in the floor.

These pieces of advice are very practical and easy to understand. And while we were making the publications we asked some members of the target group, some home helpers and some nurses at different hospitals to read it and comment it, so that we made sure that the text was as clear as possible.

Memorizing the information and changing or strengthening of action

It think there is no doubt that this information has created awareness about visually impaired, hearing impaired and deafblind people. But we have no way of knowing for sure that the professionals remembered the advice in our material or if it resulted in the effect that they were able to use it in the actual work situations.

It is very difficult to tell which effect comes as a direct result of one piece of information. Example: Maybe the receiver forgets the information as soon as he has read it. But maybe he remembers the word "deafblind", so that he pays attention to it the next time he comes across an article about deafblindness in his professional magazine. He then reads the article and learns something about deafblindness. But is that the effect of the information material or the article or both - or what? Like advertising people say: "We know that about half of all advertising has the desired effect. We just don't know which half!"

But since this is knowledge that they already maybe had or should have, we have an idea that these two publications were successful attempts to provide information to non-specialists, about deafblindness. It is important to remember, that even if the professionals are doing things right already, it is an effect to strengthen this action, so that they are convinced that it is right what they do!

I look forward to hearing your comments and discussing it with you.