Augmentative and alternative communication use by ...

Advances in Speech-Language Pathology V o l u m e 4, N u m b e r 2, p p , 8 9 - 9 4 C o p y r i g h t © 2002 b y T h e S p e e c h P a t h o l o g y A s s o c i a t i o n of A u s t r a l i a L i m i t e d

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Augmentative and Alternative Communication Use by People with Traumatic Brain Injury: A Review Lanie Campbell The Spastic Centre, Sydney, Australia

Susan Balandin University of Sydney, Australia

Leanne Togher University of Sydney, Australia

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The aim of this article is to review the available literature in the area of augmentative and alternative communication (AAC) use amongst individuals with traumatic brain injury (TBI). The inability to speak following TBI may be either temporary or permanent. Either way, it is important that an individual is provided with a series of AAC systems that are appropriate for each stage of his or her recovery. For speech pathologists to be competent in assessing and implementing AAC systems to people with TBI, training and support at an undergraduate level and in the workplace are vital. !.

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Individuals with traumatic brain injury (TBI) are a population with unique communication needs and therefore require specialised augmentative and alternative communication (AAC) assessment and treatment (DeRuyter & Becker, 1988; DeRuyter & Kennedy, 1991; Doyle, Kennedy, Jausalaitis, & Phillips, 2000). Historically, individuals who were temporarily unable to speak were often considered a low priority for AAC intervention (DeRuyter & Kennedy, 1991). However, more recently there has Address for correspondence: Lanie Campbell, Speech

Pathologist, TASC,The Spastic Centre, 189 Allambie Road, Allambie Heights NSW 2100, Australia. Email: [email protected]

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been a clinical shift toward providing individuals with TBI with a series of AAC systems that are temporary in nature and therefore easily changed if necessary (Beukelman & Mirenda, 1998; DeRuyter & Donoghue, 1989; Scroggs, 1995). Providing such systems helps ensure that communication support is responsive to changing cognitive and functional status throughout recovery. Examples of temporary systems may include y e s / n o systems, alphabet and phrase boards, and simple voice output devices (Keenan & Barnhart, 1993). To optimise success, an individual's AAC needs should be reviewed regularly over the course of recovery by a team of professionals with knowledge and experience in AAC and TBI. For speech patholo89

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gists to have this knowledge and experience, education at an undergraduate level and continued training and support in the workplace is required (Balandin & Iacono, 1998). However, even with some training, speech pathologists may be at a loss to know where to begin intervention, as there is a paucity of empirical research that explores the best intervention practices with those who do not regain speech.

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INCIDENCE Although accurate figures on the incidence of TBI in Australia are difficult to obtain, approximately 149 per 100,000 of the population sustain a TBI each year (Fortune & Wen, 1999). Fortune and Wen reported that males accounted for approximately 70% of people with TBI. People aged 15 to 19 were at highest risk of TBI, closely followed by children aged 0 to 4. These figures are similar to those reported in the United States (DeRuyter & Lafontaine, 1987; Love & Webb, 2001).

Medical Background TBI occurs when there is rapid acceleration and deceleration of the head, for example, in a motor vehicle accident where on impact the head moves quickly and then stops abruptly. There may be discrete focal lesions, contusions, and contrecoup damage from the force of impact of the brain against the bone of the cranium or from diffuse brain injury (Love & Webb, 2001). In either case, the injury results in compromised neurological function (Levin, Benton, & Grossman, 1982) often including cognitive communicative disorder (Love & Webb, 2001). The damage that occurs as a result of TBI can also be classified as primary or secondary (Doyle et al., 2000). Primary damage occurs at the time of impact and results from mechanical forces. Examples of primary injury indude vascular injury, cranial neuropathy, and haemorrhagic lesions. Secondary damage results from the brain's response to the primary injury. Examples of secondary TBI include haematomas, hypoxia, and increased intracranial pressure (Doyle et al., 2000). The frontal and temporal lobes are especially vulnerable to damage due to their location near bony protrusions inside the skull. Thus, TBI may result in language, cognitive, behavioural, motor, visual, perceptual, and personality changes, all of which will affect communication.

Communication Disorders Following TBI Communication disorders following TBI occur as a result of motor speech deficits, cognitive problems, and specific language disorders. These can occur independently of one another or in combination.

Sarno, Buonaguro, and Levita (1986) noted that 30% of people with a TBI had some degree of dysarthria. This figure was confirmed in an Australian study of 103 people with TBI who were followed up 5 years postinjury. For these individuals the incidence of dysarthria was 34% (Olver, Ponsford, & Curran, 1996). In the same sample, 67% of the participants reported ongoing word-finding difficulties, and 35% reported comprehension difficulties. However, despite reports of motor speech and language disorders following TBI, the most common communication disorder sustained is cognitive communication disorder (Love & Webb, 2001; McDonald, Togher, & Code, 1999). The severity of an individual's cognitive communication disorder is a key consideration when designing AAC for people with TBI. Individuals with TBI commonly have cognitive deficits consistent with frontal lobe damage. Examples of cognitive processes attributed to the frontal lobes include ability to focus attention, remembering and learning, organising information, reasoning, and problem solving (Ylvisaker & Szekeres, 1994). In addition to specific cognitive processes, the frontal lobes appear to mediate executive control of thought and behaviour (Lezak, 1993). Frontal lobe damage can dearly impact upon an individual's ability to use even simple AAC systems. For example, some individuals may have difficulty focussing their attention on using their communication board and consequently forget the message they intended to convey. It is therefore important that an individual's cognitive communication abilities need to be understood as completely as possible prior to recommending an AAC system.

RECOVERY FROM TBI Cognitive Recovery In Australia, recovery following TBI is often described according to a number of stages including the acute phase immediately following the injury, coma, and post traumatic amnesia (PTA). After emerging from coma, the person with TBI usually enters a period PTA. PTA is described as a period where "the patient is confused, amnesic for ongoing events and likely to evidence behavioural disturbance" (Levin, O'Donnell, & Grossman, 1979, p. 675). Identifying the duration of PTA is crucial, as it provides an index of the severity of the injury (Russell & Smith, 1961) and is one of the best predictors of the level of outcome (Bishara, Partridge, Godfrey, & Knight, 1992). Following emergence from PTA, the person with TBI often experiences a resolution of confusion and returns to some goal-directed behaviour; however, he or she may continue to process information slow-

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AUGMENTATIVE AND ALTERNATIVE COMMUNICATION USE BY PEOPLE WITH TBI ly and inefficiently and become confused by large nonroutine tasks. Clearly, these problems will be compounded if the person with TBI has a cognitive communication disorder and is unable to speak. The most commonly used method of measuring emergence from coma, particularly in the United States, is the Ranchos Los Amigos Levels of Cognitive Recovery (LOCF) (Hagen, Malkmus, & Durham, 1979). These levels can help staff and family to understand the cognitive recovery after a TBI (Ladtlow & Culp, 1992), although more rigorous neuropsychological testing is needed to evaluate this area thoroughly. More recently, the broader categories of earl~ middle, and late phases of recovery have also been used (Szekeres, Ylvisaker, & Cohen, 1987) to describe the recovery process following TBL The relationship between LOCF and PTA has not been extensively documented. During the early phase of recovery (LOCF I-HI), individuals are progressing from no response to generalised inconsistent purposeful responses. In the middle phase of recovery (LOCF IV-V), individuals remain disoriented and confused; however, they may demonstrate purposeful responses in highly structured settings. Given these descriptions it can be assumed that during the early and middle phases of recovery, a person would generally remain in a state of PTA. In the late phase of recovery (LOCF VI-VIII), behaviour is generally appropriate and goal directed; however, residual cognitive deficits often persist, indicating ongoing emergence from PTA. Individuals with a very severe injury may never emerge from PTA or reach the late stage of recovery, either because they have a very severe injury or because they have specific memory difficulties. R e t u r n of S p e e c h Predicting recovery of communication abilities following TBI is a difficult process. Beukelman (1988) argued that a number of clinical factors need to be considered when predicting return of functional speech. He noted that age, neurological deficits, rate of change in speech over time, changes in swallowing status, and history of intervention all affect the recovery of functional communication. Ladtlow and Culp (1992) conducted a retrospective study examining the general pattern of speech recovery of 138 people with TBI. They reported that 29 (21%) of these people were unable to speak at some stage during their recovery. Of these 29 people, 55% regained functional speech, and all of them did so during the middle phase of their recovery. The authors recommended that these results be interpreted cautiously due to the relatively small number of patients in their sample. Although Ladtlow and Culp noted that most people regained functional speech during the middle stage of their recovery, in some

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cases recovery of speech has been reported many years postinjury (Dongilli, Hakel, & Beukelman 1992; Light, Beesle~ & Collier, 1988). In these cases, the individuals communicated using a variety of AAC systems as their cognition improved, prior to reacquiring speech. In the case reported by Light et al. (1988), the adolescent female used different systems at each stage, including yes/no responses, a communication display with written words, and a computer with a membrane keyboard. She started to reacquire speech approximately 3 years after her injury; however, she still used AAC to augment her spoken language. Because it is difficult to accurately predict and quantify the amount and rate of recovery, as noted above, DeRuyter and Kennedy (1991) recommended that all AAC systems be considered temporary in the early stages of recovery.

AAC AND TBI The majority of literature documenting AAC use by people with TBI to date is based on clinical evidence and provides guidelines for assessment and implementation of AAC at various stages of an individual's recovery (e.g., DeRuyter & Becker, 1988; Ladtlow & Culp, 1992). In addition to this, there are a number of case studies that document the course of recovery and describe the types of AAC systems used (Beukelman & Mirenda, 1998; DeRuyter & Donoghue, 1989; Ladtlow & Culp, 1992). There are few experimental studies in the area of AAC that focus specifically on AAC use by people with TBI.

AAC System Type and Recovery Stage The individual's stage of recovery and his or her specific communication needs are both important considerations when determining the most appropriate AAC systems. The process of assessing and implementing AAC with a person with TBI is similar to that used with any person who requires assessment for an AAC system. It is beyond the scope of this article to detail the various methods of AAC assessment. However, the impact of cognition paired with stage of recovery on AAC assessment is unique to this population and consequently will be addressed. Doyle et al. (2000) emphasised that these processes manifested by the individual with TBI should be understood as completely as possible prior to selection and implementation of an AAC system. The role of speech pathologists during the period of PTA is not well circumscribed; however, they can facilitate the process of maximising communicative effectiveness. AAC use during this stage needs to be kept simple and will tend to involve low technology systems or simple technology. AAC systems may also be useful in the later stages of PTA for the nonver-

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bal client to facilitate the assessment of PTA (e.g., using binary/multiple-choice written cards to evaluate orientation to person, place, and time). Snow and Ponsford (1995) suggested that overstimulation can exacerbate agitation in the person with TBI. Therefore, it is important to keep AAC systems simple in the early stages of recovery and to minimise distractions in the individual's environment to maximise their communication potential. There is strong clinical evidence that an individual's LOCF influences the type of AAC system needed (DeRuyter & Kenned~ 1991); however, there is limited research to support this claim. Clinical evidence suggests that a direct relationship exists between an individual's LOCF and the type of AAC system. This means that an individual functioning at a lower LOCF uses simple systems, and individuals with higher LOCFs use more complex systems (DeRuyter & Kennedy, 1991; Fried-Oken & Doyle, 1992). This contention has been supported by Keenan and Barnhart (1993) who conducted a retrospective study on 82 individuals with TBI who had been treated at a centre for people with neurological disorders over a 5-year period. Keenan and Barnhart found that direct and natural methods of communication (e.g., head nods, pointing, or eye gaze) were most commonly used. Results were obtained from two sources: first, reviews of speech-language notes in medical records and, second, follow-up data from surveys about AAC use. Some of the hmitations of this study were that there was a wide variance in the time postinjury of the participants at the time of the follow-up survey and reliability of medical record entries was dependent on staffing levels, clinician competency, and consistency with file entries. These results therefore need to be interpreted cautiously. Prospective research documenting the type of AAC system at set intervals postinjury is needed to clarify the types of AAC systems used throughout recovery. Doyle et al. (2000) further investigated the relationship between AAC use and stage of recovery. They reported that during the early stages of recovery (LOCF II-III) individuals might use simple yes/no responses and choice making. At LOCF IV-V, individuals may use a range of simple systems induding gesture, word and symbol boards, alphabet boards, and possibly simple voice output devices. At the later stages of recovery, when the rate of cognitive recovery has slowed, more permanent systems may be considered. At this stage systems such as alphabet boards, voice output devices, and communication folders may be introduced. Clinical evidence suggests that the majority of individuals with TBI will eventually be able to use an alphabet-based system (DeRuyter & Kennedy, 1991; DeRuyter & LaFontaine,

1987; Keenan & Barnhart, 1993). Research is needed to support these dinical observations. DeRuyter and LaFontaine (1987) also reported that simple systems were recommended for 76.6% of the individuals seen for assessment. The individuals were both inpatients and outpatients at various stages postinjury. Again, these results need to be interpreted with care, as the individuals were not separated into groups according to time postinjury. In addition, simple systems may be prescribed because the speech pathologist has limited knowledge of the more complex systems available (Balandin & Iacono, 1998; Russell & McAllister, 1995). When considering the more complex systems, it is, however, important for professionals to weigh the relative benefits and drawbacks of using a hightechnology device. Hux, Burke, Elliot, Ross, and Hrnicek (2001) described the differences in communication mode and function between people with TBI who used speech and those who relied on text-tospeech AAC systems. They found that people who used text-to-speech AAC as their primary means of communication initiated less conversation and produced fewer questions and comments than those who relied on speech to communicate. Although the people using AAC spent the same amount of time listening as those who spoke, they spent much longer generating their message. Case studies provide insight into AAC use for people with TBI and are an important precursor to developing research questions. Indeed, there are a number of case studies that document the transition through multiple systems and techniques for implementing AAC for people with TBI (DeRuyter & Donoghue, 1989; Ladtlow & Culp, 1992; Light et al., 1988). A case study by DeRuyter and Donoghue (1989) documented the different AAC systems that a young man used during the course of his rehabilitation. The authors described the complex issues surrounding assessment and intervention of a young male with TBI. They suggested that in the earlier stages of recovery, the emphasis was on communication needs, whereas later on, the focus was on developing interaction strategies, participating in the rehabilitation process, and improving quality of life. In describing the different AAC systems used by an adolescent female following TBI, Light et al. (1988) agreed that it is necessary to reassess both the individual's skills and communication goals regularly. They further noted that AAC seemed to facilitate, rather than impede, return of speech, resulting in the adolescent female reacquiring speech many years after her TBI. Although a professional observation like this must be interpreted carefully, cases such as these indicate the ongoing need for research in this area. Clearly, more research into all aspects of AAC use by people with TBI is needed.

AUGMENTATIVE AND ALTERNATIVE COMMUNICATION USE BY PEOPLE WITH TBI

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Professional Training Given the benefits of AAC use, it is important that individuals with TBI have access to AAC through every stage of their recovery. For this to occur, speech pathologists need to be competent in assessing and implementing AAC for individuals with TBI. For this reason, comprehensive preprofessional preparation and ongoing training for speech pathologists are essential. Undergraduate speech pathology education needs to include AAC courses so that AAC becomes a core part of a speech pathologist's basic competency rather than being a specialised field (Ratcliff & Beukelman, 1995). Additionally, optimal student clinical experience should include time working with individuals with acquired communication impairment w h o are unable to speak. Ratcliff and Beukelman (1995) conducted a survey to obtain information about the preprofessional preparation of speech-language pathologists in AAC. They found that although there had been a significant increase in undergraduate courses in the past 10 years, students did not appear to be getting hands-on experience with AAC technology or docking up clinical hours in the area. Practising speech pathologists also need further education and training in AAC and TBI (Balandin & Iacono, 1998). A survey of 971 speech pathologists working in Australia (Balandin & Iacono, 1998) indicated that 350 (36%) worked with clients with TBI, yet the speech pathologists had little knowledge of AAC systems. The most common reason given for not introducing an AAC system was the patient's cognitive ability (Russell & McAllister, 1995). Considering that most individuals with TBI have a cognitive communication disorder, this is of some concern.

CONCLUSION There is a scarcity of research into AAC and acquired neurological disorders (Doyle et al., 2000). This is particularly true in the area of TBI. Clearly, more research is required to provide the evidence that is needed regarding benefits and efficacy of AAC interventions for people with TBI. Literature based on clinical evidence strongly suggests that people with TBI do benefit from AAC; however, further research is needed to substantiate these claims. Research into the most effective methods of training people and their carers to use AAC is needed, as is the most cost beneficial way to provide this service. Assessing and implementing AAC for individuals with TBI can be challenging and often time consuming for speech pathologists. It is particularly difficult for speech pathologists who have limited experience in working with individuals with TBI or who have

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little expertise in AAC. The need for further training, more services, and further clinical research cannot be overstated if individuals with TBI are to have every opportunity to communicate throughout their recovery.

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Hux, K., Burke, R., Elliot, J., Ross, M., & Hrnicek, T. (2001). Communication interaction differences between natural speakers and AAC users with traumatic brain injury. Journal of Medical Speech-Language Pathology, 9(1), 70-88. Keenan, J. E., & Barnhart, K. S. (1993). Development of yes/no systems in individuals with severe traumatic brain injury. Augmentative and Alternative Communication, 4,184-190. Ladtlow, M., & Culp, D. (1992). Augmentative communication with traumatic brain injury. In K. Yorkston (Ed.), AAC in the medical setting (pp 139-243). Tucson, AZ: Communication Skill Builders. Levin, H. S., Benton, A. L., & Grossman, R. G. (1982). Neurobehavioural consequences of closed head injury. New York: Oxford University Press. Levin, H. S., O'Donnell, V. M., & Grossman, R. G. (1979). The Galveston Orientation and Amnesia Test: A Practical scale to assess cognition after head injury. The Journal of Nervous and Mental Disease, 167, 675--684. Lezak, M. D. (1993). Newer contributions to the neuropsychological assessment of executive functions. Journal of Head Trauma Rehabilitation, 8(1), 24-31. Light, J., Beesley, M., & Collier, B. (1988). Transition through multiple augmentative and alternative communication systems: A three-year case study of a headinjured adolescent. Augmentative and Alternative Communication, 4, 2-14. Love, R., & Webb, W. (2001). Neurology for the speech-language pathologist. Boston: Butterworth-Heinemann. McDonald, S., Togher, L., & Code, C. (1999). Communication disorders following traumatic brain injury. Hove, UK: Psychology Press.

Olver, J. H., Ponsford, J. L., & Curran, C. A. (1996). Outcome following traumatic brain injury: A comparison between 2 and 5 years after injury. Brain Injury, 10(11), 841-848. Ratcliff, A., & Beukelman, D. (1995). Preprofessional preparation in augmentative and alternative communication: State-of-the-art report. Augmentative and Alternative Communication, 11, 61-73. Russell, A., & McAUister, S. (1995). Use of AAC by individuals with acquired neurologic communication disabilities: Results of an Australian survey. Augmentative and Alternative Communication, 11,138-146. Russell, W. R., & Smith, A. (1961). Post-traumatic amnesia in dosed head injury. Archives of Neurology, 5, 4-17. Sarno, M., Buonaguro, A., & Levita, E. (1986). Characteristics of verbal impairment in closed head injured patients. Archives of Physical Medicine and Rehabiliation, 67, 400--405. Scroggs, D. J. (1995). AAC and TBI: Transitioning systems through the phases of recovery. Proceedings of 1995 Minspeak Conference. [On-line]. Available http://kaddath. mt.cs.cmu.edu/scs/95-djs5.html Snow, P., & Ponsford, J. (1995). Assessing and managing impairment of consciousness following TBI. In J. Ponsford 9Ed.), Traumatic brain injury: Rehabilitation for everyday adaptive living (pp. 33-64). Hove, UK: Erlbaum. Szekeres, S. F., Ylvisaker, M., & Cohen, S. B. (1987). A framework for cognitive rehabilitation therapy. In Ylvisaker & E. M. tL Gobble (Eds.), Community reentry for head injured adults (pp. 87-136). Boston: College-Hill Press. Ylvisaker, M., & Szekeres, S. F. (1994). Communication disorders associated with closed head injury. In R. Chapey (Ed), Language intervention strategies in adult aphasia (pp. 546-568). Baltimore, MD: Wrflliams& v~rflkins.