COMMUNICATING WITH NONVERBAL PATIENTS IN INDIA: INEXPENSIVE AUGMENTATIVE COMMUNICATION DEVICES Subhash C. Bhatnagar* and Franklin Silverman ABSTRACT Various communication prostheses have been developed to augment the limited communication abilities in children and adults who are speechless because of developmental disabilities or neurological diseases. Communication boards remain the most economical of such communicative prostheses. Five communication boards in Hindi containing alphabet, words, and pictures are discussed, which were developed to assist non-verbal persons in northern India, and which have been used to promote communication with adults with stroke. These communication boards can equally be used with minimum modification by both developmentally disabled children and neurologically impaired adults. SCOPE OF NON-VERBAL COMMUNICATION The most notable gift that humans possess is their ability to verbally communicate. An inability to speak can be the most catastrophic disability, since this deprives one of independence and human dignity. People with impaired/limited speech are described as being communicatively impaired, non-verbal, or speechless. Without a reliable and consistent mode of self-expression, speechless persons become socially isolated. Since most of them may understand spoken language, possess intact cognitive skills, and are aware of the surroundings, this speechlessness adds to their frustration. The family becomes equally dismayed at their inability to understand what the person wishes to express. Loss of verbal communication is commonly found in persons with natal/prenatal developmental conditions (cerebral palsy/ pervasive developmental disorder), with neurological conditions (stroke, traumatic brain injuries), with degenerative conditions (Huntington's chorea, multiple sclerosis (MS), amyotrophic lateral sclerosis (ALS), and Parkinson's disease), and with oral-facial-neck malformations (1). Many of them are also tracheostomized and ventilator-dependent. Many non-verbal/oral communication (augmentative) aids and strategies are available to allow a speechless or communicatively impaired person to participate in social exchanges. These range from the use of a simple yes/no system to more detailed communication boards and computers equipped with synthesised speech output systems. Designing and selecting of the appropriate non-oral system depends on the user's residual cognitive (attention, memory, and self monitoring) skills, communicative needs, and sensorimotor abilities. Most of these augmentative and alternative means of communication for expressly impaired persons have been developed in the United States and the western European countries. Only recently have these augmentative/ substituted/alternate communicative systems developed in non-western languages such as Hindi. Gesture and Gesture-Assisted Types of Devices Selecting a non-oral communicative device depends on the affected person's method of communicating using the augmentative devices. Thus, the available communicative aids and devices can be categorised into two major types: gestural access and gestural-assisted (2). The gestural access system to non-verbal communication requires no instrumentation for encoding and transmitting messages. Common examples of gestural systems are hand/head gestures, eye-blinks, facial expressions, written communication, sign language (a manual communication system used by deaf individuals), and American-Indian hand-talk (a manual communication system with simple visually concrete gestures). The gesture-assisted access system to communication requires a symbolic medium for encoding messages, which involve graphic or electronic displays of the non-oral symbolic systems. Common examples of the symbol system are: the alphabetic board, boards with frequently used words or pictographic symbols, Blissymbolics (an idiographic/arbitrary system with a universal appeal for international communication), Braille, and Morse code. Access Types The affected person can use two different methods for using these devices: direct selection or scanning access methods for communicating. In direct selection, the person points to the target letter, word, or symbol using motor movements including moving of the eyes. For example, a finger can point or type, or a mouth/head stick with or without light can identify the target message, and the eyes can gaze. In the scanning access system, the communicative partner (family or friend) presents items/letters/words and continues until the person indicates his/her approval of the target message by a predetermined signal, which could involve a motor response, a yes/no response from a simple switch, or a simple eye-blink, or any consistent gesture. NON-ELECTRONIC COMMUNICATION BOARDS Non-electronic communication boards are simple and cost-effective devices for encoding and transmitting messages, and they are also easy to construct. In order to produce these communication boards one can write symbols on rectangle sheets of cardboard, plastic, or paper. The size of the communication board can vary from 42 (length) by 35 (width) centimetres to a size of 9 by 6 centimetres and can be divided into columns and rows. There are various kinds of communication boards ranging from simple alphabet to word/picture boards. Communication boards containing alphabet and commonly used words/phrases/sentences are the most suitable for those non-verbal individuals who can read. For those who cannot read, boards can be made using symbols in the form of pictures (pictographic) or drawn ideas (ideographic) or Blisssymbols can be used. In order to supplement the communicated messages, pictorial boards can also have the written words/phrases printed under or above the pictures. This article presents four basic charts that have been developed in Hindi for communicating with verbally impaired subjects (be they children with developmental disabilities or adults with stroke). These are the Alphabet Communication Board, the Lexical Communication board, the Eye-Gaze E-Tran Communication Board, and the Pictorial Board. These boards have been clinically tried with Hindi speaking stroke patients with expressive or global aphasia. Also included is the board with Blisssymbols, an internationally known non-verbal system of communication. The messages covered and examples used for trial teaching on the boards are only suggestive and generic in nature. Physicians, professionals, and family members should feel free to modify these boards to make them more useful for their needs and the patients in question. In order to promote and facilitate the development of such communication boards in other Indian languages, this paper also describes how to design each of these boards and provides instructions for using them. Alphabet Communication Board An alphabet communication board (Figure 1) is good for non-verbal persons who, because of poor motor speech control (dysarthria), are unable to speak but have good auditory comprehension and a reasonable spelling ability. Many of them are afflicted with neurogenic conditions, such as Parkinson's disease, multiple sclerosis, amyotrophic lateral sclerosis, and cerebral palsy. This alphabet board is useful for encoding basic one-word messages containing nouns/verbs/adjectives only. In order to keep it simple, no Hindi vowel "matras" have been included in the board. They either can be guessed from the selected consonant sequence, or they could be determined by the identification of the corresponding vowels. The board's size is dependent on the person's physical and cognitive ability. Further, depending on the motor ability, the person can use the selectional access where he constructs the message by pointing to the letters in a sequence to form words and phrases. Otherwise, a physically disabled person can rely on the scanning access-mode, where the communicative partner like a family member points to the target letters, and after scanning the pointed items, the patient responds by indicating "yes" or "no." The disabled person's response can involve any motor action, such as nodding head, blinking eyes, or tapping hands. Two important strategies for using the board are linear and row-column scanning (Figure 2). In linear scanning, the partner points to the letters in rows beginning with the first letter at the left end of the row and going to the right most letter. Once the first row is completed, they scan through the second row. This pointing continues until the non-verbal person signals "yes" to select the first letter. The partner then again begins with the first row scanning and goes to other rows until the person signals the second letter of the sequence. This process continues until the entire word has been spelled out. Since this is a slow process for encoding a message, one must limit this communication only to important words. For row-column scanning, the communicating partner points to the first row and asks the person if the intended letter is in this row. If the person signals "no," the partner goes to the second and other rows and asks the same question. This process continues until the person says "yes" and the line is identified. Then the communicating partner begins with the first column letter in the row and asks for the letter in each column (Is this the letter?) and continues until the person says "yes." The communicating partner begins again from the first row for the second targeted letter and continues this two-step scanning process for each letter. The row-column access system is faster than the linear scanning. One can also use the eye-link strategy for a completely paralysed person, who can move his eyes while using the alphabet communication board. The person gazes through a transparent sheet at a selected letter and the partner moves the sheet until both link or make eye contact. The partner pronounces the target letter out loud and the process begins again. The 'eye-link' appears to be a fast method of communication for persons with minimal motor skills. Lexical Communication Board The Lexical Communication Board (3) contains common words: nouns, pronouns, verbs adverbs, and adjectives (Figure 3). Also included are grammatical/tense markers, which would allow the sentence formation depending on the person's level of linguistic competence, in addition to Hindi alphabet and numbers. The words and phrases included on the board are based on how important they are for simple communication. Depending on person's cognitive ability and communicative need, the word symbols can be used individually or by combining them in small clauses. Even though the grammatical marking and verb agreement markings which are central to Hindi grammar, are present on the board, the correctness of gender/number/tense agreement need not be emphasised in communication. An important point to remember is that the appropriateness and effectiveness of communication are more important than the grammatical correctness. The most practical way for someone to use the lexical board is to point to symbols with a finger, hand, or pencil. In case of arm/hand paralysis, the person can use a mouth-stick (stick held in the mouth) or head stick (a stick tied to the side of head with a head gear or tape) for pointing. Each disabled person has different needs for communication and those needs must be met in order to make the communication board work. Prior to using the communication board, families should plan for how the content of the communication board is introduced. It is better to start with a few words in the beginning and only gradually increase the number of words for communication. The best way to start is first to communicate using only a small section of the board involving a few commands. It is functional to initiate with commands that require either a yes/no, good/bad/fine, or one word response. For example, one can begin with biographical questions like: "Are you a doctor?" (no), "Have you been sick?" (yes/no), "Do you live in Bombay?" (yes/no). The next step will be to help use words like "good", "bad", "fine" in response to basic questions like "how was this food? weather? medicine? cloth?" A few training questions requiring single word responses are: "What do we say when someone visits you?" (namastey... baithiye), "What day is today?"
Using family pictures, the person can be taught to indicate the family relationships listed in the board. Further, using sentences that require him to fill in the missing information, the person can be taught to communicate in order to call specific people by filling the blank from the relations listed in the board. Additional fill-in the blank sentences are also listed in the board, which disabled persons can use to provide their names and addresses ("My name is...", "My address is ...."). To enhance the speed of communication, the disabled persons should first be familiarised with prefabricated phrases and clauses that are listed in the board. Working with multiple pronouns, adjectives, nouns, and grammatical agreements should be undertaken only if the person is ready and really needs them. A rule of thumb is that if the person has limited needs for communication, he should never be overwhelmed with the additional symbols/phrases. Once he clearly understands the basic use of the board and the fruits of effective communication, only then one needs to recalculate what additional symbols are to be incorporated into the core commands, if needed. Patience and time are the keys to success in effectively using the communication board. Eye-Gaze (E-Tran) Communication Board "Eye-gaze board", also called "E-Tran chart" (Figure 4), is designed for severely disabled individuals. These may include people with severe developmental disabilities, quadriplegic cerebral palsied, stroke affected persons, and persons with multiple sclerosis and amyotrophic lateral sclerosis in the advanced stages when most of the motor control is lost except some control or eye movements. These persons become speechless or their speech is severely unintelligible, but they can understand spoken language, read, and spell well. Using of the E-Tran chart requires some control of the upper face (1), an area that is known for its bilateral innervation, so that the disabled persons can direct their gaze.The chart should be printed on transparent plastic (overhead transparency material mounted in a plastic frame). When communicating, the partner holds the board so that the letters are directed toward him; the user (disabled person) will be reading letters on it backwards. When the disabled person is gazing straight through the chart, the eyes appear to the partner to be at the centre of the board. The letters on the board are arranged in eight groupings with each group containing three rows. The single letter present in the top row of each grouping is an Hindi vowel. The remaining two rows of each grouping contain two consonant letters. Signalling the selection of a letter in the second or third row of groupings is a two-step process. In the first step, the user directs his gaze to the grouping of the target letter and then to the centre of the board. In the second step, the user directs the gaze toward the corner of the board that corresponds to the letter location in the second or third row of the grouping (upper left corner, upper right corner, lower left corner, and lower right corner) and then to the centre of the board. For example, for communicating the word "chaay:tea" the user requires the selection of three letters "CH", "AA", and "Y", with each letter involving two gaze movements (the movement signalling the grouping of target letters and the marking the location of the character within the grouping). Thus, communicating this word would involve the following six steps: directing gaze to the upper centre grouping, directing gaze to the upper left corner, directing gaze to the upper centre grouping, directing gaze to the upper centre grouping, directing gaze to the lower left corner, and directing gaze to the upper right corner.
Communication Board. After each character is signalled, the communicating partner should voice the character for the correctness. If it is incorrect, the user should re-signal the character. In order to make it more efficient, disabled persons using it should select as few words as possible for communication. The gazing efforts can be economised if communication can take place without involving vowels. E-Tran boards can also be used to encode entire messages (Figure 5) where the person can point to an entire message via direct selection. The person uses his eye gaze to refer to a specific message from a series of pre-selected messages, displayed on an attached communication board. The participants involved in communication are aware of these selected messages that the person has learned to communicate. One can also use the eye gaze method with pictures on the communication board. In a related manner, one can also use Morse code for communication. Morse code, consisting of letters and digits in the form of dots and dashes, has been used for centuries in India for tele-communication in Hindi and English. One can obtain the Morse code symbols from the local postal and telegraph office. In order to use it, it is only necessary that a person has intact neuromotor skill for producing a single muscle gesture at two different rates or two muscle gestures at a single rate. For example, blinking eye once for a dot and blinking it longer for a dash or moving eyeball left or right for dots and dashes. A prior knowledge of Morse code does help a person in its use for communication. Nonetheless, basic muscle gestures can also be taught to a cognitively intact person. All one needs is a chart containing its symbols that could be used by both the speaker and listener. Similar to Morse code, one can also use Braille symbols for communicating in Hindi and other Indian languages that have a well developed system of Braille code.
Picture Communication Board There are some problems in using the non-verbal communication boards using lexicons. The foremost problem is that their use is very time-consuming and requires a long period of training. In order to overcome the time-related problem, picture communication boards (3) have been developed for use with persons who cannot speak, write, and read their language (Figure.6). The most notable advantage of picture boards is that they can be used with minimal training. They can easily be customised for persons with different communicative needs. However, they can be used for only limited communication. To construct a Picture Communication Board, one has to consider the selection of pictorial symbols, picture categories, and their designs and sizes. Selecting pictorial symbols should be semantically appropriate and related to the disabled person's communicative needs involving the concepts most commonly used in daily communication. Again, the categories would involve the pictures and symbols that are needed for communication and include people (mother, father, son, daughter, wife, husband, doctor, he/him, you/your, I/we, and servant), common actions (am, is/are, was/were, clean, eat, drink, dress, give, take, listen, sleep/rest, want, wash, read, and bath), nouns (food, tea, vegetable, pulse, fruits, milk, water, sugar, shirt, pants, coat, underwear, sari, glasses, cane, medicine, pain, hand, leg, head/hair, stomach, back, money, school, newspaper, book, pen/paper), and adjectives (sick, happy, asleep, painful, fat, first, last, little, more). The symbol designs should be kept simple. It is preferable to use line drawings for clarity. For size, the picture drawings may be as large as one to two inch for increased prominence and visibility. With no inherent limit on the size of the board, a picture communication board can have less than ten or more than fifty pictorial symbols. A simple pictorial communication board recommended for Hindi speaking users is presented in Figure 6, which contains pictures of common nouns, verbs, and people. Clinically, the best way to introduce a picture board is to begin with a few stimuli in the beginning, and not to expand the stimuli until the user has consolidated them.
Blissymbol Communication Board Blissymbol Communication Board has been used internationally for promoting communication among non-verbal adults and children, who cannot otherwise, read or spell. Blissymbols are easily recognisable idiographic symbols and some of them are also pictographs (Figure 7). Blissymbols have been used world-wide working with different clinical populations and have been found to be very effective in promoting communication. The Blissymbol Communication Board reproduced in Figure 7 contains hundreds of common symbols. The Hindi word for each symbol is printed underneath. Even though the chart has numerous symbols, the best way to introduce Blissymbols to an individual is first to cover the large part of the board and then begin with only a few symbols. One should never work with more than five to ten symbols in the beginning. These symbols should be based on their importance in the patient's communicative needs. Hindi words written under the symbol are for the convenience of the user.
Advantages of non-electronic communications system Non-electronic communication systems offer the most practical and economical approach to alternative communication for speechless persons. These involve a simple encoding system, which, if needed, could also be supplemented by complex and costly electronic communication systems. Specific benefits of the non-electronic communication systems are that they are easily constructed and can be personalised to the individual needs of the disabled individuals. Further, they are portable and replaceable, require simple training, and, most importantly, are low-cost items. ELECTRONIC COMMUNICATION SYSTEMS The electronic communication system is a high-tech system that provides options for non-speaking tracheostomised and ventilator-dependent persons. These electronic systems could be dedicated or integrated. Dedicated devices are used for communication alone while the integrated systems are computers that are modified for communication needs. Electronic communication devices provide greater flexibility for generating messages and they may better serve cognitively intact persons. The primary features of the electronic devices are a synthesised voice output and dual format of visual display and synthesised speech. Numerous software/hardware packages are available that can be used on lap/desk top computers for generating synthesised human speech. Major advances have taken place in computer synthesised speech and electronic devices. Numerous speech synthesising software/hardware are available which are powerful tools for communication. Computer-based augmentative devices are very costly and their uses require a long period of training and a higher level of cognitive skills. Unless paid for by charitable trusts or governmental agencies, these are generally beyond the financial means of disabled persons, and thus are currently not the most suitable devices for mass use in India. *Programme in Speech Pathology and Audiology P.O. Box 1881, College of Health Sciences, Marquette University, Milwaukee, WI. 53201-1881, USA REFERENCES 1. Bhatnagar, SC, Andy, OJ. Neuroscience for the Study of Communicative Disorders. Baltimore: Williams and Wilkins, 1995. 2. Silverman, FH. Communication for the speechless (Third Edition). Needham Heights, Massachusetts: Allyn & Bacon, 1995. 3.Bhatnagar, SC. Facts About Aphasia and Stroke: A Family Guide for Patients in India. New Delhi : Ratna Sagar Publishers, In Press. |