Communicating with deafblind individuals or deaf people who also have a cognitive disability is particularly difficult. The University of Groningen, together with Koninklijke Kentalis, is researching whether ‘sense stories’ – stories that can be told through smell or touch, for example – can help to improve such communication. The aim: to ensure that this group of people and their relatives can enjoy spending time on the same thing as one another. The research is still being carried out, yet the initial responses appear to be positive.
Text: Beau Oldenburg / Photos: Henk Veenstra
Gijs, who is deafblind, sits bent over in an electric wheelchair, deep in his own world. His supervisor walks towards him and carefully takes his hands. Gijs springs up and sits straighter. The supervisor gently traces a garland with red strips along his face and hands. Gijs grabs hold of the strips and smiles. Then, the supervisor gives him a party hat adorned with silver sequins. Gijs glides his fingers over the sequins and puts the rim of the hat in his mouth. He smiles from ear to ear, as he recognizes it: he wore this hat during a fun Carnival afternoon.
The story told to Gijs is called a ‘sense story’. These stories make use of our senses, such as smell and touch. Together, Saskia Damen from the University of Groningen and Rita Gerkema-Nijhof from Koninklijke Kentalis are researching the effects of sense stories on deafblind individuals and deaf people who also have a cognitive disability, as well as on their relatives.
The researchers hope that the sense stories will help to improve communication with this group of people. Damen: ‘In addition to sensory disabilities, this target group also often has limited cognitive abilities. Due to these multiple disabilities, it can be difficult to communicate with them, yet that is very important. If a deafblind person has too little contact with others, then they may retreat into their own world too much.’
Most sense stories are about fun things that a person has experienced, such as Gijs’ Carnival afternoon. Damen: ‘It is hard to tell deafblind people about things that they do not yet know about. For example, it is now winter. If you want to tell a story about this, it would be best to first take your client outside, allow them to touch the leaves, feel that it is a bit cold and wet, and then perhaps drink a hot chocolate to end. Later on, you can use all these experiences to make a story.’
Sense stories must be tailor-made, as they are based on personal experiences. Damen and Gerkema-Nijhof are not, therefore, working on a collection of ready-made stories but are instead creating a sort of user manual. They are researching what types of storytelling come across well and which story elements are the most suitable. With these insights, they will be able to train and support relatives and supervisors better, so that they can also compose their own stories.
Gerkema-Nijhof: ‘The sense stories are, primarily, a fun way of establishing contact between the client and their relatives or supervisors. For them, it is very important to be able to spend time on the same thing as another person, to focus their attention on something.’ According to Gerkema-Nijhof, it is a lovely bonus that the stories are also entertaining. ‘The mother of a client heard her child laughing when the supervisor told a sense story. She was surprised and said: “I heard my child laughing, he hardly ever does that!”’
In the long term, the stories will ensure that it is possible for deafblind individuals or for deaf people who also have a cognitive disability to further develop their communication abilities, which is difficult but certainly not impossible. Gerkema-Nijhof: ‘How much exactly people learn from this depends on the level of their disability, but we hope that the sense stories could be a stepping stone to telling a story themselves. For example, because someone may learn a new sign or word through these stories. Having contact with someone by spending time on the same thing is a first step in learning to communicate.’
The researchers are making video recordings of the sense stories being told. They are doing so to be able to give the storyteller focused feedback. In addition, the video images are part of the research data. The researchers are analysing the images to see what effects the sense stories produce. One of the most significant challenges in the research study is to do this in the most systematic way possible. Damen: ‘It is very important that the research assistants who are analysing the videos know what they need to pay attention to. They therefore need to be trained well. Practise videos, for example, may be of help in this way. I have faith that we will eventually come to a good method for this, but it may take some time to get us there.’
Another challenge is the question of how you can exactly establish whether the person telling the story and the deafblind person are actually paying attention to the same things, and whether they are enjoying the story together. Gerkema-Nijhof: ‘More research has been done on shared attention, which we can build on. But not much is yet known about shared enjoyment experienced by this group. You can’t always see enjoyment from the outside. A smile, for example, does not always mean that someone is enjoying something – they may be nervous. We therefore need to agree in advance how to measure enjoyment on a person-by-person basis, depending on how that person expresses it.’
The research is still underway, but in practice, Damen and Gerkema-Nijhof are already seeing enthusiastic responses. Gerkema-Nijhof: ‘We are seeing that this storytelling method really appeals to both the client and their relative or supervisor. There is clear enjoyment and laughter. If parents get the idea that their children are not enjoying something, then they will not bother them with it again. But if they do see their children enjoying something, then they will want to do that again. This makes them happy.’
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