Enabling people with sensory impairments to participate effectively in research
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- Whitney, G. Univ Access Inf Soc (2006) 5: 287. doi:10.1007/s10209-006-0052-x
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The aim of this paper is to identify and discuss some of the effects that a person’s sensory impairment has on the ways in which they can participate in research. Sensory impairment will result in a person receiving less sensory information. This reduction may be uniform across a particular type of sensory information (like having the volume on the radio turned down or watching things through a haze) or, more likely, it will have different effects on different parts of the available information. The result of this information loss will not be that the person has a partial experience of a situation compared to a person without a sensory impairment or with a different sensory impairment. Instead, they will have a full experience based on a different combination of information, and it is likely that more of the information that they are using will come from their memory or previous experience. This paper describes ways of working that acknowledge the different experiences of people with a hearing or visual impairment with respect to both the object of the research and the research process. It describes how to design questionnaire, use interviews and focus groups and carry out evaluations of objects and situations in a way that acknowledges the effect of the different amounts and types of information available have on the experiences of people with sensory impairments.
KeywordsSensory impairmentHearing impairmentVisual impairmentResearch methods
This paper is based on the author’s personal experiences whilst working as a researcher in the Royal National Institute of the Blind and in the School of Computing Science at Middlesex University, and conducting research in partnership with hundreds of elderly and disabled people. The research consisted of working with potential users of systems to identify how information and communication technology (ICT) could be used to benefit them; it also involved carrying out evaluations of that technology with representative users. In such context, information was acquired on the effect of sensory impairment on how people perceive objects and situations both in the formal (questionnaires, interviews, focus groups, evaluations) and informal parts (refreshment breaks) of the research. This work has enabled to identify how sensory impairments can lead people to miss information from their environment or to interpret the information in a different way, and how a lack of acknowledgement of these different interpretations can result in errors in the research results.
The two most common ways of providing information from ICT technology are sound and vision. This paper will therefore concentrate on the effect of hearing and visual impairment on a person’s ability to receive and use available information.
2 Elderly and disabled people
On the 29 January 2003 the European Assembly adopted Recommendation 1592 ‘Towards full social inclusion of people with disabilities’. In its preamble, this document states that “It has been estimated that people with disabilities represent 10–15% of the total population in Europe. In other words, 80 to 120 million European citizens have a form of disability, a number which exceeds the population of almost every European State” .
The increasing number of elderly people in Europe will lead to an increase in the number of people who have one or more disability. It will especially have an effect on the number of people who have a combination of sensory, cognitive and physical impairments which in combination affect their ability to carry out physical tasks and acquire and process information correctly.
Disability becomes more prevalent as people age. For instance; 70% of people with impaired vision are over 75, or to look at it the other way round, more than one person in six over the age of 75 is blind or partially sighted . The majority of these people will have some useful vision and hearing, but they will have a reduction in the amount of visual and audible information that they are receiving. This can lead to difficulties with static tasks such as reading or cooking, and can also lead to problems when the person attempts to use relevant information to move through the built environment. It will have a particular effect when the person attempts an unfamiliar task or travels through an unfamiliar environment. For many tasks, the prior knowledge accumulated in a lifetime of carrying out similar tasks will enable the person to carry out the task successfully, but problems may occur when a person is confronted with a new task or new piece of equipment. This can be a particular problem when carrying out research into items of new technology which have been designed to compensate or restore impaired functions, as the lack of previous knowledge of the technology makes it more difficult to use.
3 Visual impairment
Acuity (ability to discriminate objects)
Static acuity (ability to see the world as a continuous field)
Dynamic acuity (ability to discriminate detail in moving objects)
Accommodation (ability to focus on objects at different distances)
Adaptation (ability to see when changing from high illumination to low or vice versa)
Colour vision (ability to distinguish between colours)
4 Hearing impairment
Some people are deaf or hearing impaired from birth.
Some people gradually lose their hearing as they get older; in this case they are most likely to lose the ability to hear the higher frequencies first.
Others lose their hearing suddenly through illness or accident; this may result in them losing the ability to hear lower frequencies or a particular band of frequencies.
5 Access to and use of information
A sensory impairment can lead to a person missing things or incorrectly recognising them. It can also affect how the relationships between objects are perceived, and the relative values of different sensory inputs.
The information that a person receives is used to build their view of an object or task. D. Hoffman  describes how seeing and recognising objects can be likened to constructing them “you construct the objects that you see in the phenomenal sense. That is, you construct your visual experience of objects. You also construct your perceptual experience of objects by touch, taste, smell and sound”. These constructions are carried out according to rules that have been absorbed as babies and children. “Your rules allow you to construct what you see, but they also restrict what you can construct and what you can do with your constructions. The result of the construction will depend on the information that is being used, and may vary for a person with a sensory impairment.
Elizabeth Styles  goes further in analysing how people interact with objects “Quite clearly many sources of information need to be integrated not only visual and spatial information from the environment about the colour, shape and distance, but also semantic information from memory, about the sensory properties, hard/soft, heavy/light, etc.”. A person with a sensory impairment or a combination of sensory impairments may rely more on information from their memory and past experience. When information from part of the visual field is missing, information from the surrounding visual field or information from a person’s memory will be used to fill in the gaps. This can result in a person not seeing objects such as controls or signs, or it can result in people seeing things or people that are not there.
Booth  describes the situation for a person without a sensory impairment “Often information may be received about an event through multiple sense modalities. In such situations it is likely that a considerable degree of duplication and, therefore redundancy will occur with the data obtained. This can prove advantageous for the formation of effective and reliable mental representations, as multiple senses combine forces to reduce informational uncertainty and/or ambiguity”. For somebody with a sensory impairment or a combination of sensory impairments, the reduction in information will reduce the amount of redundant or confirmation information. The sensory impairment may result in some information being misperceived. This can cause problems, as it then becomes difficult to combine the information into a useful mental representation. This can lead to the person missing or mistaking the object. Different combinations of information will lead to different value judgements about the object being perceived. Mistakes are more likely to be made if the object or situation is not familiar to the user and information cannot be obtained from the person’s memory or prior experience.
Missing or mistaking something may in some situations be dangerous or embarrassing, depending on the situation, as one blind volunteer stated “mistaking the post box for your wife can be embarrassing, mistaking your wife for the post box is far worse”.
6 Methods of presentation of information
When working with people with a sensory impairment it is often necessary to present information in a number of different modalities. This will mean producing information in one format and then transferring it to another format. When information is transferred from one method of presentation to another, some of the information content is lost as information is contained both in the content and in the presentation method. As Gladstone  states “The underlying assumption by those who promote the notion of automatic transformation between modalities is that the various media are transparent. This is manifestly not true. For instance speech always includes an element of emotion, whether it is full of intonation or completely blank”.
An explanation of this effect is given in “The Accent of Babel, An exploration of language, mind and understanding” by Altmann . Of course, the neural activity that is evoked when we see a fish may not be the same as the activity that is evoked when we think about a fish, or when we hear the word ‘fish’ or when we eat a fish. In all likelihood, these patterns do differ. But because they may each occur in similar contexts (we might hear the word ‘fish’ when we see one, or eat one), there will be elements of the corresponding patterns which are similar.
The effect of information modality on content
Effect on information content when transferring from standard print
The amount of information (words) visible at any one time is reduced; also any information that was conveyed by the layout of the information is lost. The time taken to read a large print document will be considerably longer than the time taken to read a similar length small print document. This can result in fatigue and lack of interest in the participant
The transitory nature of speech will change the users’ perception of the information content. The information received by the user will also depend on the method of speech presentation, whether there is an opportunity for sections to be repeated, and whether a human voice with inflection or a computer voice without inflection is used
Any information that was conveyed by the layout of the information is lost. The time taken to read a Braille document will be considerably longer than the time taken to read a similar length small print document. This can result in fatigue and lack of interest in the participant. The effect of friction on the fingers means that discomfort may be felt if the person has to read for more than 30 min
Lip-reading is a technique whereby the deaf or hearing impaired person carefully watches the mouth of the person speaking and guesses what they are trying to say. As vowels do not appear on the lips, much of lip-reading is guess work, based on the context or situation. In perfect conditions (good lighting, no moustaches, etc), lip-reading is still 70% guesswork
The structure and vocabulary of sign language is different from that of spoken or written language. Spoken or written language is interpreted into sign language, not directly translated. There may therefore be differences in the information content in the two versions
Symbol language such as Makaton
The limited vocabulary of many symbol languages will have a large effect on the amount and type of information that can be conveyed. The time taken for communication will be longer
The main effect on transferring information from one modality to another is a loss of detail of the information being transferred; although the differences in information content may be small, they may have an effect on the understanding of the research issue. For instance, if a precise impression is desired by the use of particular phrase, it is likely to be lost.
Although much of this information is well known within the disability field, it is often the case that the effects of modality change will only be directly appreciable after mistakes are made. For example, the author of this paper freely admits to writing questions that could not be successfully transferred from one medium to another, and also to producing a questionnaire which when presented in large print took 2 days to complete.
Much of the initial research carried out in the field of design for and with people with sensory impairments has involved answering the basic question of how to provide information that a person can perceive. The research has been considered to have a satisfactory outcome if it has produced information that is perceivable. For the research to be accurate and of benefit it will need to go further than that, and look at whether the information is actually usable, whether any of the necessary information content has been lost, and whether the information can be successfully combined with the information that the person has already.
6.1 How this effects the research process—information presentation and collection
Different methods can be used to present information to, and collect information from, participants in the research process. When working with people with a sensory impairment, it is often necessary to work in a way that suits the individual. Thus for purely practical reasons information may need to be given in a different format to that in which it was created. If the research involves people with a range of sensory impairments, the same information may be given in a variety of different methods to different participants in the same project. When using interviews, questionnaires or focus groups which make use of different information modalities, it must be remembered that there is the potential for information content to be lost when the information is transferred from one form to another. All these forms of communication transfer must therefore make use of the ability of the person with a sensory impairment to feedback their understanding of a question or of a piece of information before proceeding.
This method of working could potentially take longer, but will ensure that fewer errors are made. It is therefore necessary to ensure the best use of the time of any sensory impaired participants in a project. Thus, it is important that suitable background research is carried out to discover what is required from the research.
6.2 How this effects the research process—evaluation of objects and situations
The evaluation of items of technology which have been designed to benefit people with disabilities normally involves asking them about their views of the object, its use and its features. When carrying out this research, it is necessary to understand how the different perceptions of the participants can affect their understanding and use of an item. At the simplest, this means that assumptions cannot be made about the user’s perception of an item such as a control switch. A user with a sensory impairment may take longer to discover and identify the features of an object.
6.3 Issues for participatory or emancipatory research
When discussing the use of the emancipatory research process, Professor Colin Barnes  stated that “In response, all researchers can do is make our position clear at the outset. This means stating clearly our ontological and epistemological positions and ensuring that our choice of research methodology and data collection strategies are logical, rigorous and open to scrutiny”. Research with people with disabilities can only take place successfully if it is based on the persons’ view and understanding of a situation. Research methods such as participative or emancipatory research are a useful starting point, as they can ensure the useful and full participation of people with disabilities in the research process, but it is still important to acknowledge the different perceptions of the different participants.
The European funded project EUSTAT—Empowering USers Through Assistive Technology  stated that “EUSTAT had both a technological and social orientation: it stemmed from the idea that people with disabilities must be active participants in the choice of their AT, thus helping equal opportunities and also introducing direct control by the end-user over the quality of AT services and products”. To enable people with disabilities to be active participants involves ensuring that no assumptions are made as to how a person with a sensory disability perceives any object or piece of information.
Two main points need to be considered when carrying out research with people with sensory impairments. The first is how to base the research on the person’s viewpoint, and the second is to ensure that necessary information is not lost or confused when information is transferred from one medium to another. It is imperative that research with people with sensory impairments is based on the persons experience and understanding, meaning that assumptions can not be made as to their perceptions of a situation. As identified by Truman ,“In terms of the ‘truths’ which emerge from this process, it is accepted that the hope of effective research is to generate true propositions”. To identify that truth will involve using a communication method that acknowledges the different sensory experiences of the different participants.
Researchers in a number of fields have identified the need for a greater involvement by users in research. ‘Involving Consumers in Research and Development in the NHS: Briefing Notes for Researchers’  describes how the involvement of the end users of research can dramatically alter both the way in which the research is carried out and the final results. Suitable research methodologies are required to ensure that disabled and elderly people are active participants in the design process, and that it is their experience which is being evaluated, as opposed the researchers understanding of their experience. This is required to ensure that useful and useable products are produced that can be used to support people in their chosen lifestyle.
The combination of the users’ perception and their prior experience will effect how they view a situation, and until those elements are understood it is impossible to understand their viewpoint. For successful research to be undertaken with people with sensory impairments, considerable effort must be taken to understand their perception of any object or situation.