Caregiver training in an AAC intervention for severe aphasia.
The American Speech-Language-Hearing Association (2005) supplement, entitled 'Knowledge and skills needed by speech-language pathologists providing services to individuals with cognitive-communication disorders,' indicates that speech-language pathologists should know about and apply computerized and other technologies when working with individuals with cognitive-communication disorders. Among the important areas to be addressed are helping clients develop functional skills, compensatory strategies, and support systems.
AAC AND APHASIA
There is a limited body of research focusing on AAC use by individuals with dementia, aphasia, and the geriatric population in general (Beukelman, Ball & Fager, 2008; Crema, 2009). AAC strategies that did not include a speech-generating device, such as written choice communication, have been implemented for individuals with severe aphasia (Lasker, Hux, Garrett, Moncrief & Eischied, 1997). This approach used communication partners to provide written word choices to support the individual's responses to questions. Cress and King (1999) reported improvements in communication skills for two individuals with primary progressive aphasia following facilitator-trained use of picture communication boards. More recently, AAC research has investigated the use of more sophisticated technology, using speech-generating devices. Lasker and Bedrosian (2001) described improved communicative effectiveness in an individual with acquired aphasia, using a voice output augmentative communication system. Lund & Light (2006) have emphasized the increasing need to facilitate utilization of AAC by individuals with aphasia and the importance of documentation to establish best practices for individuals with complex communication needs.
CONSIDERATIONS FOR AAC USE AND APHASIA
The linguistic deficits typically associated with aphasia can be compounded by deficits in attention, working memory and exexcutive functioning (Purdy & Dietz, 2010). These deficits may also present challenges to effective AAC usage. There have been reported improvements in the cognitive and language skills of individuals with chronic non-fluent aphasia following a period of AAC usage (Johnson, Strauss Hough, King, Vos & Jeffs, 2008). Ho, Weiss, Garrett and Lloyd (2005) investigated the efficacy of the use of communication books for individuals with global aphasia. Their results indicated that more effective communication occurred when the participants used real objects and photographs to convey their messages, as compared with graphic symbols. Individuals with aphasia frequently experience problems interpreting symbols such as line drawings or written words, and they struggle to combine words and symbols to formulate messages (Fox, Sohlberg & Fried-Oken, 2001; McKelvey et al., 2010).
In a recent study, data analysis from eight adults with aphasia identified their preference for using personally relevant photographs to represent words on an AAC device (McKelvey et al., 2010). The authors cited ease of recognition and the meaningful, motivational and naturalistic aspects of using these types of stimuli as possible reasons for the participant's preferences. Personal photographs are also an accepted vehicle for individuals to maintain and support social relationships with friends and family. In addition, principles of visual cognitive science suggest that when individuals using AAC view personally relevant photographs, they process the essential content as a whole, rather than in fragmented bits (Wilkinson & Jagaroo, 2004).
A cerebrovascular accident can result in changes in the social network of an individual. Lasker, Garrett and Fox (2006) identified the loss of the ability to comprehend and use language (and therefore communicate effectively), that is often associated with aphasia, as a key factor in a reduced ability to establish and maintain relationships and fulfill social roles in life. These changes may include a decrease in the total number of communication partners and exchanges as well as a shift to increased dependence on family members as primary communication partners and caregivers (Dondam & Lasker, 2007). Social isolation and depression are often described as consequences affecting the individual with aphasia and his/her family. Changes in roles as a consequence of a partner's dependence post-stroke can contribute to a caregiver's isolation (Goldfarb & Pietro, 2004). One of the important goals of intervention for individuals with aphasia is to foster a shift from partner-dependence to greater independence through improved communication skills (Garrett & Lasker, 2007).
COMMUNICATION PARTNERS AND AAC INTERVENTIONS
Increasing research over the last 15 years has focused on the essential role of communication partners in AAC interventions and the importance of enlisting the involvement of caregivers/ family members (Beukelman, Fager, Ball & Dietz, 2007; Fried-Oken, Rowland & Gibbons, 2010; Light, Dattillo, English, Gutierrez & Hartz, 1992). Successful communication using AAC strategies is dependent on family acceptance and support. One potential obstacle is that family members may fear that the use of AAC may actually impede the improvement or recovery of natural speech (Beukelman et al., 2007). Involving family members/caregivers in the assessment and implementation phases of AAC may help in dispelling this error. Another frequent obstacle to functional AAC use is abandonment of the system after a short period of time. Johnson, Inglebret, Jones and Ray (2006) cited lack of training for AAC users and caregivers as a primary factor that resulted in abandonment of AAC systems. Family members also have the potential to have a positive or negative influence on the functional use of AAC over time, especially if they are not given sufficient opportunities for participation and training.
Focused training of caregivers/spouses in AAC strategies has yielded some positive outcomes. Light et al. (1992) instructed facilitators to decrease their conversational control and provide increased opportunities for individuals using AAC systems to communicate. This resulted in increased communicative initiations and reciprocity in the AAC users. Spouses of individuals with non-fluent aphasia have been trained to implement the use of symbol-based AAC, resulting in some general improvement in communication skills ( Hough & Johnson, 2009; Johnson, Hough, King, Vos & Jeffs, 2008).
A caregiver's role can be important to the generalization of AAC use in different contexts and environments. Hugh and Johnson (2008) found that implementing AAC training with a participant's spouse/caregiver enhanced accurate exchanges of information between them, resulting in fewer communication breakdowns. The level of familiarity and comfort between an individual with aphasia and a caregiver/spouse certainly supports successful communication in natural environments (Fried-Oken et al., 2010). Successful use of AAC strategies is dependent on the opportunities for naturalistic interactions and daily communication situations for using the AAC system (Hill, 2010).
Fried-Oken et al. (2006), in their report on the use of AAC device use for persons with ALS, cite the importance of identifying the specific communication purposes that are important to each AAC user and caregiver. Their findings also suggest that if AAC technology is available, individuals will use it to stay connected to family and friends. There is increasing evidence to support the premise that AAC systems can enhance quality of life for individuals with complex communication needs, such as aphasia (Beukelman et al., 2007; Hill, 2010; Johnson et al., 2008).
CASE STUDY DESIGN
Beeson and Robey (2006) reviewed over 600 articles published over the past 50 years on treating aphasia and related disorders (288 articles used group designs to examine effects of treatment, and 332 were single-subject case reports or experimental studies). The authors found it difficult to assess efficacy of various treatments or to synthesize the findings in a meaningful way. While meta-analyses of the outcomes from group studies (see, for example, Robey, 1998) suggest that treatment for aphasia results in improvement in language performance relative to untreated controls, such analyses are not appropriate when applied to research where N = 1. Some suggestions (Beeson & Robey, 2006) for evaluating single-subject research should include the following: (1) studies with large effect size, where the treatment effect diverges from the null state; that is, where the outcome is more or less than zero; (2) studies that present testable hypotheses, either in pre-treatment vs. post-treatment or treatment vs. no treatment conditions; and (3) studies that can be grouped because they address a common dependent variable, such as lexical retrieval, speech fluency or auditory comprehension.
Experimental design has been discussed in the context of evaluating efficacy of intervention techniques with populations that are heterogeneous, such as individuals using AAC. Single-subject designs are felt to be especially well-suited to this population because participants serve as their own controls (McReynolds & Thompson, 1986).
Higginbotham & Bedrosian (1995) cited the heterogeneity of the population who use AAC as a reason why the majority of research has relied on case studies and single subject experimental designs. Fox and Fried-Oken (1996) concluded from their review of AAC and aphasia research that "the most clinically relevant information is contained in case studies and single-case experimental research" (p. 268). The authors reported that important information related to the individual's communication needs and capabilities may be missed when participants are grouped.
A case study approach was used in the present investigation to examine the benefits of a (speech-generating) AAC device for an individual with severe non-fluent aphasia. The caregiver (spouse) was trained in the use of the AAC device and facilitated its use in the home environment. It was hypothesized that the use of AAC would result in an increase in the following communication behaviors: a) responses (using AAC); b) initiations (using AAC) and c) independent verbalizations.
The participant for this case report was a 63-year-old man with a diagnosis of severe non-fluent aphasia. Mr. D. was a native English speaker and a high school graduate. He worked in the airline industry for 39 years before retiring. In October of 2007 he underwent surgery for aortic valve replacement and removal of an aortic aneurysm. Following the surgery he suffered multiple CVAs, the last two causing cerebral hemorrhage and seizures. He subsequently underwent a course of rehabilitation at several different facilities. He received speech-language therapy at a university speech and hearing center for one year prior to the present intervention, consisting of one 45-minute individual session and one 45-minute group session weekly.
Since onset there were significant problems with all aspects of both language formulation and speech production. Language testing with the Bedside Screening and Evaluation Test for Aphasia, Second Edition (BEST-2) (West, Sands & Swain, 1997) and the Communicative Abilities in Daily Living, Second Edition (CADL-2) (Holland, Frattali & Fromm, 1999) indicated unintelligible utterances with some appropriate gestures and severely limited reading and writing abilities. Auditory comprehension was moderately impaired, but adequate for indicating basic needs with gestures and facial expressions. There was a moderate-severe impairment in all aspects of verbal use of language. On the BEST-2, overall scores in each modality were in the severe range except for reading, where moderate impairment was noted. On the CADL-2, a test of functional language, a severe impairment was also noted, with an overall score in the 9th percentile. On all tasks there was a long latency of response, inconsistency in comprehension of simple material and only limited display of frustration. Based on these results, the diagnosis was severe non-fluent Broca's aphasia. The severity and variety of symptoms is likely related to the history of multiple CVAs, probably affecting diverse cortical and subcortical areas.
Assessment of speech production revealed severe distortions of 95% of consonants and vowels of the English language. Hypernasality, a breathy vocal quality and a reduced rate of speech were noted. The participant's speech was informally judged to be severely unintelligible more than 80% of the time, due to severe flaccid dysarthria. An oral peripheral examination revealed weakness in tongue movements and slowness of all oral movements. There was a history of swallowing and chewing deficits, with recent improvements in these skills.
The participant was recruited from the University Speech & Hearing Clinic where he was receiving weekly individual and group therapy. A comprehensive assessment at the clinic 9 months after admisssion recommended the use of augmentative and alternative communication since his primary methods of communication were facial expressions, gestures and primarily unintelligible utterances. Communication initiations were rarely observed and he was able to respond to most yes/no questions using gestures. He was able to point using his right hand. Premorbid handedness was left, but some degree of hemiplegia has precluded the continued use of his left hand.
The AAC device selected for intervention was the LEO, manufactured by Tobii ATI. A number of AAC devices were considered for use in this study. Computer-based dynamic display units such as the Dynavox V and the Lingraphica were deter-mined to be too challenging in terms of cognitive demand and operational complexity. The LEO was selected for its portability (since the participant was ambulatory) and its ease of use and programming. The LEO uses recorded, digitized voice output. The importance of natural-sounding, intelligible speech output has been recognized for individuals with aphasia and their caregivers given the age, hearing and auditory comprehension abilities of many individuals with this impairment (Beukelman et al., 2007). The voice output on the LEO is activated via direct selection by pressing on the picture overlays designed for the individual user. The participant had no difficulties using adequate pressure to press on the individual pictures with his right index finger. The caregiver and the participant were in agreement with the selection of the LEO as the AAC device.
An interview session was conducted with the participant and his spouse to explain the purpose of the investigation and determine their willingness to participate. Both were asked to compile vocabulary/messages that would be functional for daily conversations. Using Garrett and Beukelman's (1992) Assessment of Capabilities and Communicator Type, the participant was identified as a "specific-need communicator" with the primary need of saying names of family members. Two overlays were designed for the AAC device, one with basic messages such as "coffee please" and one with family member's names. Due to the participant's limited reading abilities, and the established iconicity of personally relevant pictures, photographs accompanied the written names/messages.
Instructions on basic operation of the AAC device and facilitation techniques were provided to the spouse in two 45-minute training sessions. Basic operation instructions included how to turn the device on and off; how to charge the battery; how to change the overlays and how to record new messages. The facilitation techniques/instructions were adapted from Light et al. (1992) as follows:
Goal 1: To provide opportunities for the participant using AAC to initiate conversation. Instructions to caregiver: Approach your husband within visual and auditory range for communication; focus attention on him and pause at least 10 seconds.
Goal 2: To allow the participant using AAC the time and opportunity to respond.
Instructions to caregiver: Following each communicative turn, pause at least 10 seconds, focus attention on your husband and use nonverbal cues (e.g., an expectant facial expression).
The spouse was also instructed to limit yes/no questions and to ask open-ended questions wherever possible, e.g. "What do you want to drink ?" instead of "Do you want coffee ?" Data sheets were provided for the spouse to record the participant's initiations and responses using the AAC device, as well as any verbalizations that accompanied the use of the device. The data sheets were set up for ease of recording, with columns for responses, initiations, use of AAC and concurrent verbalizations. The spouse was instructed to check off each occurrence in the appropriate column throughout the day and to date each sheet. Initiations were defined as any message conveyed spontaneously by the participant, using the AAC device, without prompting or facilitation from the spouse or other family member. Responses were defined as any message conveyed by the participant, using the AAC device, following a question posed by the spouse or other family member, without prompting or facilitation. If the participant verbally communicated while using the AAC device, this behavior was also recorded on the data sheet. These communicative behaviors were recorded over 17 dates in the home environment. The investigators met with the participant and his spouse weekly to collect data sheets, review procedures and address any questions or concerns.
The spouse was compliant in recording her husband's initiations, responses and any concurrent verbalizations on the data sheets. The data were collected throughout the day in a variety of natural contexts in the home environment. The participant's initiations and responses to questions using the AAC device increased by 93 %, and his concurrent use of verbalizations increased by 98 % over the 17 different recording sessions where there were data in all of the four measurements. (see Figure 1). An unexpected development was the participant's spontaneous use of the device's voice output as a model for practicing family members' names. His ability to pronounce the various names had been severely impeded by his dysarthria and using family members' names was a communication priority for him. Anectdotally, his wife reported hearing him sitting in the next room, activating the voice output by pressing on the photographs, and then repeating the name, attempting to improve his speech production.
[FIGURE 1 OMITTED]
There were four measurements which were subjected to statistical analysis: (1) the number of uses of the AAC device during a single recording session, which formed the basis of comparison to the other three measurements; (2) the number of initiations of communicative interactions by the participant; (3) the number of responses the participant provided to the caregiver; and (4) the number of independent vocalizations the participant produced.
In viewing the data (see Figure 1), it appears that there was little effect of use of the AAC device on any of the other three parameters through the initial 10 recording sessions. During Session 11, the participant began to use the AAC device to practice independent vocalizations (almost exclusively consisting of imitating the names of family members), at a rate of about 10 times as many as the average of the previous sessions. Beginning Session 12 onward, there was a sharp increase in the other three measurements, indicating that once the participant learned the strategies of use of AAC, initiations, responses, and verbalizations, he maintained the improved performance in all areas.
The research question involved the effect of use of AAC on other means of communication. Accordingly, the Pearson correlation coefficient was deemed to be the appropriate statistical measurement. The Pearson product-moment correlation coefficient measures the degree of association between two or more variables. The closer r is to +/-1, the greater is the degree of positive or negative linear relationship. A zero correlation means that there exists no linear relationship whatsoever between X and Y (i.e., they tend to change with no connection to each other). The correlations were significant for all calculations of r: for correlation between use of AAC and initiations, [r.sub.15] = 0.610, p <.01; for correlation between use of AAC and responses, [r.sub.15] = 0.998, p < .01; and for correlation between use of AAC and independent verbalizations, [r.sub.15] = 0.716, p < .01.
A significant finding in a statistical analysis indicates that a relationship is real, but not that it is strong. Strength of association measures are obtained by squaring the r value, with a weak association indicated at a level below 0.60 and a strong association above 0.80. Accordingly, there are weak associations between use of AAC and initiations ([r.sup.2] = 0.372) and between use of AAC and independent verbalizations ([r.sup.2] = 0.513); but a very strong association between use of AAC and responses ([r.sup.2] = 0.996).
The present study incorporates two of the three suggestions that Beeson and Robey (2006) suggest are important in single-subject research: there is a large effect size, and there is an increasing body of investigations of caregiver training and use of AAC devices for aphasia rehabilitation. Overall, the participant's initiations and responses using the AAC device, and his concurrent use of verbalizations increased over the 17 recorded sessions.
Individuals with acquired medical conditions, such as aphasia, often experience changes in their social roles in response to the challenges their condition may impose (Beukeleman, Garrett & Yorkston, 2007). In the case of caregivers or spouses, there may, in effect, be a role reversal and resulting learned helplessness on the part of the individual with aphasia. Familiarity from years of being together may facilitate anticipation of basic needs and communicating by the caregiver. The participant's spouse commented that she had to stop herself from doing routine tasks such as getting her husband a cup of coffee and instead ask him an open-ended question (e.g., "What would you like to drink this morning ?") to facilitate communication via the AAC device. The caregiver's report is consistent with the observation that instruction can result in changes in the facilitator's behaviors and interactions as well as changes in the participant's behavior and responses. Facilitator training has been reported to result in increased responses and information sharing on the part of the AAC user (Light et al., 1992). This was supported by the significant correlation between use of AAC and responses in the present case report.
Frequently, the burden to support the communication and participation in meaningful interactions for the individual with aphasia falls on the communication
partner (Linebaugh, Kryzer, Oden & Myers, 2006). Beukelman and Mirenda (2005) suggest the importance of communication partners of individuals with aphasia learning the following skills: how to wait for a response or initiation; how to provide opportunities for communication; how to offer choices; and how to inventory messages and add them to communication systems (p.496).
In the present report, the training provided for the spouse focused on developing these particular skills to facilitate functional communication. She reported that this provided her with a new strategy for supporting her husband's communication. She also noted that the use of the AAC device increased her husband's social interactions, particularly with family, which is supported in the literature (Beukelman & Mirenda, 2005). There has been an increasing focus on the importance of family support and training of caregivers/family members as a critical component of an AAC treatment plan (Johnson et al., 2006; Jones, Mathy, Azuma & Liss, 2004).
There was not a significant increase in the number of initiations, responses and verbalizations accompanying the use of AAC by the participant until session 12 onward (see Figure 1). Often, the use of AAC is abandoned not only due to lack of training for AAC users and caregivers (Johnson et al., 2006), but also because of lack of sufficient time for practice and generalization of use. Hough and Johnson (2008) reported the greatest improvement in communication skills appeared to occur in the final month of a 3-month treatment regimen for an individual with chronic aphasia using AAC. The notion of staying the course, and providing consistent intervention over a period of time, when implementing AAC for individuals with chronic aphasia, has important clinical applications and should continue to be explored.
Finally, there appeared to be a large motivational factor in the opportunity for the participant to engage in verbal practice using the voice output of the AAC device as a model. Some AAC devices, such as the Lingraphica, have integrated this concept into their software. In addition to functioning as a communication device, the Lingraphica includes videos for practicing phonemes, commonly used phrases and automatic speech. Significant improvements in chronic aphasia across speech/language modalities have been documented in formal testing and were also reported by caregivers/family members following use of this AAC device (Steele, 2009; Aftonomos, Steele & Wertz, 1997). The improvements were attributed, in part, to the users' ability to practice word repetition on their own throughout the day.
A single case report does not permit generalization of the results. A focus of future research in this area might be to establish criteria to evaluate a caregiver/spouse's potential to be a facilitator of AAC use. The participant's spouse did not develop new messages for the overlays on the AAC device during the period of time that the data were collected. However, the success and functionality of an AAC device depends on the dynamic updating of the vocabulary and messages available. Education of facilitators should include establishing competencies to modify and update the messages in the AAC system as situations/contexts in the AAC user's life change.
Future investigations should further explore the relationship between the voice output of the communication device and the increased motivation for the AAC user to repeat the utterance and practice their speech.
Opportunities for successful access to AAC is dependent on an interrelationship between AAC technology's features, the AAC user's cognitive, linguistic and motoric abilities, and the communications partner's acceptance and support of this form of communication (Higginbotham, Shane, Russell & Caves, 2007). Research in this area of practice should increasingly focus on the social interactive aspects of communication, rather than focusing on the physical attributes of the device and the individual, as was typical in the past.
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This study was supported, in part, by an Adelphi University Faculty Development Grant to C. Arroyo and R. Goldfarb.
* AUTHOR CONTACT INFORMATION
CINDY GEISE ARROYO
Adelphi University Hy Weinberg Center
158 Cambridge Avenue, Garden City NY 11530 (516) 877-4768
Hy Weinberg Center
158 Cambridge Avenue
Garden City, NY 11530
Phone: (516) 877-4785
Hy Weinberg Center
158 Cambridge Avenue
Garden City, NY 11530
Phone: (516) 877-4765
Cindy Geise Arroyo, Robert Goldfarb, and Elaine Sands Adelphi University
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|Author:||Arroyo, Cindy Geise; Goldfarb, Robert; Sands, Elaine|
|Publication:||The Journal of Speech-Language Pathology and Applied Behavior Analysis|
|Date:||Aug 1, 2012|
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