Purposes of AAC Device Use for Persons with ALS as

Reported by Caregivers

MELANIE FRIED-OKENa*, LYNN FOXb, MARIE T. RAUc, JILL TULLMANd, GLORY BAKERa,MARY HINDALb, NANCY WILEa, and JAU-SHIN LOUa

aOregon Health & Science University, Portland, Oregon, USA, bPortland State University, Portland,Oregon, USA, cPortland VA Medical Center, Portland, Oregon, USA, and dUniversity of Colorado

Health Sciences Center, Denver, Colorado, USA

Thirty-four informal caregivers who support 26 persons with ALS reported on AACtechnology use. Each caregiver completed the Communication Device Use Checklist, asurvey tool developed for this study based on Light’s (1988) classification of the purposes ofsocial interaction (Augmentative and Alternative Communication, 4, 66 – 82). The checklistincludes 17 purposes of communication and asks participants to judge importance, mode,and frequency of use for each purpose. Results show that the three communication purposesused most frequently and valued as important by caregivers involve regulating the behaviorof others for basic needs and wants (getting needs met; giving instructions or directions toothers; and clarifying needs). Consistent reports of use and frequency for the purposes ofstaying connected (social closeness) and discussing important issues (information transfer)indicate that AAC technology can assist the dyad in maintaining previous relationships. Theface-to-face spontaneous conversation mode is used most frequently, despite the slow rate ofproduction, the lack of permanence, and the demands on conversational partners duringmessage generation. Clinical and research implications are discussed.

Keywords: Augmentative and alternative communication; Amyotrophic lateral sclerosis;Communication purposes; Caregivers

INTRODUCTION

Amyotrophic lateral sclerosis (ALS) affects ap-proximately 20,000 people in the United States inany given year (Borasio & Miller, 2001). Theprogression of motor loss that characterizes thedisease results in life changes for people withALS and their families. A diagnosis of ALSportends changes in the ability to walk, speak,eat, and eventually, the ability to breathe and tosustain life (Armon & Moses, 1998). Persons withALS (PALS) and their families must adapt inorder to cope with these changes, and to remainas functional and independent as possible overtime.A mean age of onset of 58 years suggests that

ALS is often diagnosed while men and women arein the most productive years of their lives(Borasio & Miller, 2001). For these individuals,symptoms of the disease may first become

apparent while they are managing family, career,and financial responsibilities. For others, symp-toms may emerge after retirement, when they areexperiencing life with fewer external obligationsand a greater emphasis on maintaining socialconnections with others. For each family livingwith ALS, patterns of interaction are likely todiffer depending on a person’s age at diagnosis aswell as the life cycle stage of their family (Fox &Sohlberg, 2000). Other factors that may affectinteraction patterns include, but are not limitedto, levels of fatigue for both persons with ALSand caregiver, cognitive change experienced bypersons with ALS, disease type at onset, diseasestage, and rate of progression (Ball, Beukelman &Pattee, 2004; Chio et al., 2004; Lou, Reeves,Benice, & Sexton, 2003).AAC interventionists frequently recommend

communication systems that include speech-gen-erating devices so that, despite the loss of speech,

*Corresponding author. Oregon Health & Science University, Oregon Institute on Disability and Development, P.O. Box 574,Portland, OR 97207, USA. Tel: 1 503 494 7587. E-mail: friedm@ohsu.edu

Augmentative and Alternative Communication, September 2006 VOL. 22 (3), pp. 209 – 221

ISSN 0743-4618 print/ISSN 1477-3848 online � 2006 International Society for Augmentative and Alternative CommunicationDOI: 10.1080/07434610600650276

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persons with ALS may continue to fulfill the roles(e.g., parent, worker, spouse) considered impor-tant in their lives (Doyle & Phillips, 2001). Tofulfill these roles, individuals need to commu-nicate in all of the essential areas of socialinteraction described by Light (1988): to meettheir basic needs, to share new information, toestablish and maintain social closeness withothers, and to follow the rules of social etiquette.Many types of AAC technology are capable ofstoring and retrieving messages to fulfill commu-nication needs in all of these areas (Bardach &Newman, 2003). Case studies and empiricalresearch, however, have suggested that AACtechnology is employed selectively to fulfilldifferent purposes (Murphy, 2004; Doyle &Phillips, 2001; McNaughton, Light, & Groszyk,2001; Mathy, Yorkston, & Gutmann, 2000). Forexample, Mathy and colleagues (2000) havereported that quick needs are often communi-cated using unaided or low technology methods,while in-depth information and stories are morelikely conveyed using high technology AACsystems. McNaughton et al. (2001) reported thatAAC technology is used for continued employ-ment in order to maintain intellectual and socialstimulation.Researchers who have examined the use of low

and high technology by persons with ALSdiscussed other challenges associated with AACuse. Beukelman and Lasker (1988) suggestedthat people with ALS use unaided or lowtechnology AAC more frequently with familiarcommunication partners and high technologyAAC more frequently with unfamiliar partners.Others have suggested that unfamiliar partnersprefer the use of low technology AAC toolswhen persons with ALS tell stories (Richter,Ball, Beukelman, Lasker, & Ullman, 2003). Ballet al. (2004) examined acceptance of AACtechnology by persons with ALS, and notedthat 96% of 50 participants accepted AACtechnology, either immediately (90%) or aftersome delay (6%) and only two individualsrejected AAC technology. Mathy et al. (2000)reported the results of a survey of 36 personswith ALS, which showed that a person’s initialALS symptoms impact the use of AAC techni-ques. Their respondents with initial spinalsymptoms were more likely to use more hightechnology AAC than were people who initiallypresented with bulbar symptoms. They proposedthat the use of handwriting to meet early needsby persons with bulbar ALS may predisposethose people to more frequent use of lowtechnology AAC approaches. In contrast, theuse of computers for writing in the early stagesof spinal ALS may predispose those particular

individuals to use integrated AAC systems tomeet more of their communication needs.Use of AAC technology depends upon a

communication system that is adaptable to motorfunction changes that occur as the diseaseprogresses, and that allows for production andstorage of messages to address each of the areasof social interaction described by Light (1988). Itis also likely that AAC technology use dependsupon an awareness of partners’ concerns, skills,and preferences (Murphy, 2004).The present study considered the opinions of

family caregivers who are relatives, friends, andother unpaid individuals caring for adults withALS. The term family caregiver is commonly usedinterchangeably with the term informal caregiverto refer to the many types of unpaid assistanceprovided by family, close friends, and/or neigh-bors. This is in contrast to care provided byformal structures: government agencies; privateorganizations; institutions; and paid, profes-sional, in-home care providers (Schulz, O’Brien,Bookwala, & Fleissner, 1995). Persons with ALSare typically cared for by informal caregivers.There are, in fact, differences in the type ofcare provided by informal and paid caregivers(Krivackas, Shockley, & Mitsumoto, 1997). Pre-vious research examining AAC technology use (Ballet al., 2004; Murphy, 2004; McNaughton et al.,2001) has used data gathered from persons withALS directly, rather than their informal caregiversor partners or professional care providers.The current study aimed to discover patterns of

importance and patterns of use of AAC technol-ogy for 17 communication purposes that expandupon Light’s (1988) four categories of socialinteraction. In addition, the study aimed toexplore relationships between reported impor-tance, mode of communication, and frequency ofuse for each purpose, as reported by informalcaregivers who support individuals with ALS whouse AAC. The present study was part of a largereffort that gathered information about a sampleof ALS caregivers.

METHOD

Design

Survey methodology and convenience samplingwere employed to obtain subjective responsesregarding the caregiving experience of informalcaregivers of persons with ALS who use AACtechnology. Information related to the mode,frequency of use, and importance ratings of AACtechnology was obtained with the Communica-tion Device Use Checklist (Fried-Oken, Fox,Rau, & Tullman, 2003). The appendix presents

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this checklist as well as its accompanying legend,and is described in detail below. In addition,demographic data on caregivers and persons withALS, as well as ALS severity ratings, wereobtained from each caregiver/PALS within theALS dyad. The present study is part of a largerpilot effort to detail the relationship of AACtechnology to a variety of caregiving activitiesand issues.

Survey Tools

Data were obtained using the CommunicationDevice Use Checklist (Fried-Oken et al., 2003).One scale in the checklist includes 17 purposes ofcommunication, grouped according to Light’s(1988) classification of social interaction. Forexample, calling for help and getting needs metquickly were considered reflective of expressingneeds and wants. Discussing important issues andconversing about health care were consideredexamples of providing new information. Having acasual conversation and telling stories wereclassified as examples of developing social close-ness. Being polite was classified as an example offulfilling social etiquette. (See Appendix for thecomplete checklist.) To determine content valid-ity, an initial checklist was distributed to fiveadditional AAC experts nationally. Their sugges-tions were incorporated into the final version ofthe scale. Internal consistency of multiple-itemsocial interaction categories was determined usingCronbach’s alpha (Cronbach, 1951): basic needs(.92); new information (.82); social closeness (.87).No Chronbach’s alpha was calculated for eti-quette as the category contained only one item.These results indicate an acceptable level ofinternal consistency. Caregiver participants wereasked to rate the frequency of use (on a five-pointscale from never/don’t know to hourly), impor-tance (on a four-point scale from unnecessary tomandatory), and mode of communication (face-to-face, written, e-mail, or telephone) for each ofthe 17 communication purposes. Participantscould specify other communication purposes forAAC technology use that were not included in thescale by responding to an open-ended question(‘‘other’’) at the end of the scale.Severity of ALS was assessed using the ALS

Functional Rating Scale (ALS-FRS) (ALS CNTFTreatment (ACTS) Phase I – II Study Group,1996). This research instrument subjectively rates11 different domains of functions, such asspeech, swallowing, handwriting, and walking,on a five-point scale from 0 (most severe) to40 (normal functioning). It is standardized as anaggregated score with all of the subscales. Forthis report, the aggregate severity score was used

rather than individual sub scores, becausethe research emphasis is on the social aspectof communication rather than individual sub-systems. Additional reports of severity ofspeech, handwriting, and walking in relation tocommunication purposes are available elsewhere(Fox et al., 2005).

Participants and Setting

Thirty-four informal caregivers of 26 personswith ALS were recruited from local ALS supportgroups, ALS clinics, AAC vendors, and AACclinical practices. The study inclusion criteriawere (a) that caregiver participants could not bepaid caregivers (b) that persons with ALS had tohave owned their AAC device for at least onemonth and must have used the device within 6months prior to the interview and (c) that personswith ALS had a confirmed diagnosis of ALS by acertified neurologist.Caregivers ranged in age from 23 to 88 years,

with a mean age of 54 years. Participants were 20spouses, four adult children, four friends, onesibling, and five others (i.e., partner of an ex-wife,sister-in-law, spousal equivalent). Twenty-sevencaregivers were female and seven were male. Insome instances, a person with ALS had more thanone informal caregiver. The 26 persons with ALSranged in age from 37 to 88 years, with a meanage of 60.3 years; 22 persons with ALS were maleand four were female. ALS severity in the presentsample, with a possible spread from 0 (indicatingsevere disability) to 40 (normal), ranged from 0 to32, with a mean of 11.22 (SD¼ 10). Tables 1 and2 summarize the demographic information forcaregivers and persons with ALS, respectively.Caregivers reported the following AAC tech-

nology use: six persons with ALS used dedicatedtext-to-speech devices such as the LightWriterSL87TM; 13 persons with ALS used computer-based systems with specialized software, suchas EZ KeysTM; four persons with ALS usedsymbol or word based dynamic display dedicateddevices, such as the DynaVox 3100TM; tworelied on computers without adapted softwarefor communication; and one used voice recogni-tion on a standard desktop computer as an accessmode. (Lightwriter SL87 is made by TobyChurchill, Ltd., and vended by ZYGO Industries,Inc., Portland, OR. EZ Keys is made by Wordsþ,Lancaster, CA. DynaVox 3100 is made byDynaVox Systems, Pittsburgh, PA.)Interviews to obtain demographic information

and to administer the Communication DeviceUse Checklist were conducted face-to-facewhenever possible in participants’ homes. In11 instances, interviews were conducted by

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telephone. Length of time for the face-to-faceinterviews was approximately 30 – 45 minutes. Allinterviews were conducted by a rehabilitationprofessional who was a member of the researchteam. All attempts were made to make caregiverscomfortable during these data collection sessions.Responses from caregivers were analyzed to

address the following research questions: Howfrequently do persons with ALS use AACtechnology for each communication purpose?What is the perceived importance of each com-munication purpose? What is the relationshipbetween the frequency of use and perceivedimportance for each communication purpose?What modes are used to convey messages foreach communication purpose? The data also werereviewed with respect to Light’s (1988) fourcategories of social interaction. For example,issues such as whether there were any differencesbetween the frequencies of use across categoriesor whether there were any differences between the

importance ratings across categories were con-sidered.

Data Analysis

Data were analyzed with descriptive statistics andcorrelational procedures (SPSS, version 11.5.0).

RESULTS AND DISCUSSION

Frequency of Reported Use of Communication

Purposes

Figure 1 shows the percent of total respondentswho rated frequency of use with AAC technologyin each of the following scoring categories: (0)don’t know/never, (1) occasionally, (2) weekly, (3)daily or (4) hourly. Table 3 lists the median scorefor each communication purpose and the numberof respondents who gave each frequency of usescore. The data reported here are ordinal level

TABLE 1 Demographic data for 34 caregivers, in ascending order by age.

Age Gender Education OccupationRelationship toperson with ALS

Time known orresided with personwith ALS (months)

23 M 13 Personal assistant Son 27625 M 16 Student; research assistant Son 30032 F 20 Researcher Friend 4033 F 16 Physical therapist Daughter 39636 F 12 Certified nursing assistant Spouse 12037 F 16 Computer programmer Spouse 15639 F 14 Caregiver Girlfriend 2841 F 14 Student; medical assistant Sister-in-law 2844 M 17 Accountant Son 52844 M 17 Accountant Son 52845 F 14 Grocery clerk Spouse 33650 F 12 Caregiver Spouse 24050 F 14 Police officer Friend 24055 M 15 Retail manager Brother 2856 F 18 Family therapist Spouse 42057 F 16 N/A Spouse 39657 F 18 Administrator Spouse 28857 F 14 Bank teller Spouse 24057 F 14 Medical clerk Spouse 43257 F 16 Legal secretary Spouse 4257 F 18 Teacher Friend 24058 F 16 Retired teacher Spouse 28859 F 17 Internet consultant Spouse 6659 F 14 Executive director Spouse 45660 F 16 Teacher Spouse 48061 F 20 Retired professor Spousal equivalent 4863 F 16 N/A Spouse 30065 F 12 N/A Spouse 56465 F 16 Teacher Daughter 78066 F 16 Retired Friend 36066 F 12 Homemaker Spouse 57669 M 12 Magician Spouse 21669 M 16 Retired Spouse 70870 F 16 N/A Spouse 49288 M 16 Retired Friend 120

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data, therefore measures of central tendencyshould be interpreted with care. While we reportmedian scores to help the reader see certain broadtrends, we encourage the reader to review the datain Table 3 to better appreciate the diversity ofresponses provided by the participants.According to Figure 1 and Table 3, respondents

reported that AAC technology was used for all ofthe 17 communicative purposes included in thechecklist. The highest levels of use, as indicated bya median of 3.0, were for two communicationpurposes within the expressing basic needscategory: getting needs met and clarifying needswith caregivers. More than 35% of caregiversreported hourly use for getting needs met, and23.5 and 26.5%, respectively, reported daily usefor getting needs met and clarifying needs. It is ofinterest to note that more than 25% of thecaregivers in this sample reported no use of AACtechnology for those two purposes, suggestingthat AAC technology varies across dyads for avariety of reasons (personal preference, healthand communication status).The next highest levels of use, as indicated by a

median of 2.0, were for giving instructions ordirections to others and staying connected withfamily and friends. A large percentage of care-givers (32.4%) reported hourly technology use forgiving instructions, and another 32% reported

TABLE 2 Demographic data for 26 persons with ALS inascending order by ALS severity level.

Age(years) Gender

ALSseverity

Number ofmonths postdiagnosis

Number ofmonths using

AAC technology

52 M 0 81 6060 M 0 72 4851 M 1 31 1237 M 3 56 3148 M 3 156 12165 M 3 61 559 M 4 14 265 M 4 144 2448 M 5 98 3667 M 5 33 1260 M 6 38 1067 F 6 39 261 F 7 21 347 M 8 46 2760 F 8 24 869 M 14 36 467 M 14 84 2488 F 15 16 1262 M 16 38 2475 M 18 96 6059 M 18 17 216*67 M 22 15 159 M 29 9 865 M 29 28 456*49 M 30 60 454 M 32 11 1

*Persons with ALS report that they used computers for 18 and 38 years,respectively.

Figure 1. Percentage of caregivers reporting frequency of use of AAC technology for 17 purposes of communication.

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daily or weekly use of the technology. Insummary, two-thirds of caregivers were providedwith some form of instruction by persons withALS who used AAC technology. Anecdotally,one of the authors observed a person with ALSwho participated in this study using his integratedAAC system to tell his wife how to prepare hisfavorite hamburger casserole when friends werecoming to dinner. This interaction occurred afterthe person with ALS was no longer taking anynutrition by mouth, confirming that, in this case,directing his wife’s behavior was intended by theperson with ALS to convey new information, notto address his basic wants and needs.A similar number of respondents (32%) re-

ported that persons with ALS used AACtechnology daily to stay connected with others,while nearly 12% reported weekly use and 35.3%reported occasional use. It is noteworthy thatcaregivers reported such high levels of use for apurpose that falls clearly within the socialcloseness classification. In fact, when comparedwith all other communication purposes includedin the survey, the smallest number of respondents(four) reported AAC technology was never usedto stay connected. Thus, although a highernumber of respondents reported frequent use oftechnology to achieve some of their basic needs(clarifying and getting needs met) or to conveynew information (giving instructions), it is im-portant to note that AAC technology wasdescribed as being used by almost all of theparticipants in this sample to stay connected withfamily and friends.An additional purpose that we classified in the

new information category, discussing importantissues, had a median score of 1.50. Although the

most frequently reported score in this categorywas 1, denoting occasional use, close to 15% ofrespondents said that technology was used hourlyfor discussions, 23.5% made daily technology usefor this purpose, and nearly 12% reported weeklyuse for discussions. With only eight caregiversreporting that they never used AAC technologyfor this purpose, it had the second lowest level ofnon-use for the purposes included in the checklist,again suggesting widespread use among theparticipants.A majority of caregivers reported that technol-

ogy was not used for the remaining 11communication purposes. It is important to note,however, that at least some caregivers of personswith ALS reported at least daily use of AAC forevery one of the communication purposes, againhighlighting the importance of considering thedata on an individual basis. AAC technology wasused both for comforting others and for expres-sing feelings on a daily basis by 17.6% of theindividuals in the dyads, and 14.7% of therespondents reported technology use for dailyconversations about health matters. The use ofhumor in conversation was reported by 15% ofcaregivers, who described daily technology use forbeing funny. Daily use of technology for chattingand being polite also was reported by relativelyhigh numbers of caregivers (26.5 and 29.4%,respectively).The lowest median scores were calculated for

having casual conversation (Mdn¼ 0.5), callingfor help (0.0), conversing about work (0.0), tellingstories (0.0), and being romantic (0.0). Non-userates ranged from 50% for having casual con-versation and 52.9% for calling for help to 70.6%for flirting and being romantic and 79.4% for

TABLE 3 Median frequency of use scores and number of caregivers in each score category.

Number of caregivers (N¼ 34) in each category

Purpose Median score No use Occasional use Weekly use Daily use Hourly

Calling for help .0 18 7 0 3 6Getting needs met 3.0 10 4 0 8 12Clarifying needs with caregivers 3.0 9 3 1 9 12Giving instructions 2.0 10 2 6 5 11Discussing important issues or concerns 1.5 8 9 4 8 5Comforting others 1.0 14 12 2 6 0Conversing about health care 1.0 10 8 9 5 2Conversing about work .0 27 2 1 4 0Talking about religion 1.0 16 7 7 4 0Staying connected 2.0 4 12 4 11 3Telling stories .0 23 5 4 2 0Chatting 1.0 15 8 1 9 1Having casual conversation .50 17 3 1 11 2Expressing feelings 1.0 14 11 2 6 1Being funny 1.0 12 9 5 6 2Flirting or being romantic 0.0 24 4 1 4 1Being polite 1.0 15 5 1 10 3

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conversing about work. Rates of reported non-use for these purposes were higher than for any ofthe other communicative purposes measured bythe checklist. In our sample, most persons withALS were not employed, thus conversation forthis social role was no longer important. Like-wise, flirting and being romantic is notappropriate when a person with ALS is beingcared for by a sibling, child or friend. Fourteencaregivers were not spouses.The reported median score of 0 for using AAC

technology to call for help illustrates the im-portance of examining results on an individualbasis. A majority of respondents (18 of 34)reported that AAC is never used for this purpose,contributing to the median score of 0. Caregiverseither anticipated many persons with ALS’ needs;or speech, unaided, or no-tech AAC methodswere used by the majority of the participants inthe dyads. At the same time, nine individuals werereported to use AAC technology to call for helpon at least a daily basis, highlighting theimportance of this technology to these indivi-duals. Doyle and Phillips (2001) also found thathigh tech AAC was not used when interactionwas primarily with well-taught or familiar com-munication partners and for basic need purposes.In their case studies, persons with ALS usedtechnology more when they were in the middlestages of the disease, and relied less on AACtechnology as severity of motor impairmentincreased. A similar pattern of distribution isseen for having a casual conversation. While halfof the participants reported no use of technologyfor this purpose, 13 reported hourly or daily useof AAC devices.Levels of low use were more consistent for

telling stories. A majority of participants (67.6%)reported that AAC technology was never used totell stories None of the caregivers reported hourlytechnology use for telling stories, less than 6% ofrespondents reported daily use, and only 11.8%reported that persons with ALS use technologyweekly for this purpose.

Importance of Each Communication Purpose

Figure 2 shows the percent of caregivers whorated importance of AAC technology for the 17social purposes as (1) unnecessary, (2) optional,(3) desirable, and (4) mandatory. Table 4 providesthe median scores for each purpose and thenumber of respondents who gave each impor-tance of use score. A comparison of Figures 1 and2 suggests that patterns of importance andfrequency of use were similar for this sample ofcaregivers. Results of a bivariate correlationalanalysis (Spearman’s r) showed a significant

positive correlation between frequency and im-portance for each of the communication purposes(rs(17)¼ 0.87, p5 0.05), confirming that thedyads’ use of technology and perceptions ofimportance were, indeed, related.Again, median scores should be interpreted

with care, but can provide insight into trendsacross participants. Interpretation of the datareveals that the most important purposes forAAC technology use were in getting needs metand giving instructions or directions to others(Mdn¼ 4.0). More than 50% of respondents saidtechnology was mandatory and 14.7% said thattechnology was desirable for both purposes.Individual variation is clear, as slightly less than30% said that technology was unnecessary andone individual said it was optional for gettingneeds met and giving instructions. Clarifyingneeds, with a median score of 3.5, was eithermandatory or desirable for more than 70% of therespondents. Perhaps the majority of respondentswho assigned high ratings to these communica-tion functions considered caregiving a jointactivity between the person with ALS and his orher caregiver. It is plausible that the one-third ofrespondents who rated these functions unneces-sary or optional were fulfilling these roles withoutfeedback, direction, or partnership from thepersons with ALS they supported. Still anotherpossibility is that these persons with ALS werenot as dependent on the caregivers for generalassistance, and may have been at the early ormiddle stages of ALS, as suggested by Doyle andPhillips (2001), or were communicating theserequests through speech and gestures rather thanthrough technology.Other purposes with relatively high median

importance ratings (3.0) included staying con-nected, discussing important issues or concerns,comforting others, conversing about health care,chatting, expressing feelings, being funny, andbeing polite.More than 80% of the respondents rated

technology use for staying connected as eithermandatory or desirable. This finding supports theimportance individuals with ALS and theirpartners place on activities such as interactingwith friends and colleagues that enhance qualityof life (Clarke, Hickey, O’Boyle, & Hardiman,2001; McNaughton et al., 2001). Greater than70% of respondents said that discussing impor-tant issues and conversing about health care weremandatory or desirable. More than 60% ofrespondents said that using AAC technologywas mandatory or desirable for being funny,confirming that most caregivers liked personswith ALS to use AAC technology for humor, andthat communication with technology added levity

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to the stresses of disease progression, dependencyand caregiving.While 44.1% of participants said technology

for calling for help was mandatory, at the sametime, a high percentage of caregivers ratedimportance of calling for help with AAC technol-ogy as unnecessary (52.9%). Perhaps thesepersons with ALS had developed a consistentmethod for requesting help that did not involveAAC technology (e.g., vocalization, head-nod).

Those who used technology valued it highly;others who used forms of communication such aseye gaze, vocalization, head nod, or blinkingrated importance low for AAC technology. Theuse of AAC technology might have been too slowor complicated for this purpose among thosedyads; especially those who still had some speechor vocalization skills. Fox et al. (2005) found asignificant positive correlation between speechseverity and importance and frequency of AAC

TABLE 4 Median importance scores and number of caregivers in each score category.

Number of caregivers (N¼ 34) in each category

Purpose Median Unnecessary (1) Optional (2) Desirable (3) Mandatory (4)

Calling for help 1.0 18 1 0 15Getting needs met 4.0 10 1 5 18Clarifying needs with caregivers 3.5 9 1 7 17Giving instructions 4.0 10 1 5 18Discussing important issues or concerns 3.0 8 1 10 15Comforting others 3.0 16 0 14 4Conversing about health care 3.0 10 0 9 15Conversing about work 1.0 27 1 2 4Talking about religion 1.5 17 1 10 6Staying connected 3.0 4 2 14 14Telling stories 1.0 23 1 6 4Chatting 3.0 15 0 9 10Having casual conversation 1.5 17 1 8 8Expressing feelings 3.0 14 0 5 15Being funny 3.0 12 1 12 9Flirting or being romantic 1.0 24 0 6 4Being polite 3.0 15 0 13 6

Figure 2. Percentage of caregivers reporting importance of AAC technology for 17 purposes of communication.

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for calling for help, suggesting that AAC technol-ogy is least important for persons with ALSwhose speech is least impaired and it is mostimportant to persons with ALS who have lostspeech entirely.Other purposes with low importance ratings

included talking about religion and having casualconversation (Med¼ 1.50). Again, it is importantto examine the pattern of individual scores. Whilemany individuals gave these purposes low ratings,close to half (47%) described talking aboutreligion and having casual conversation as desir-able or mandatory. The range of scores mayreflect individual variations that existed prior tothe onset of ALS (e.g., individuals differ in theimportance of religion in their lives). Anotherpossibility is that individuals may differ in theirinterest in using AAC for casual conversation,reserving its use for ‘‘critical’’ messages. Manyindividuals gave low importance ratings to con-versing about work, telling stories, and flirting orbeing romantic (Mdns¼ 1.0). Again, while someindividuals rated these as mandatory or desirable,the overall low importance ratings for thesepurposes may have reflected life changes experi-enced by persons with ALS. As employmentcomes to an end, or as romance is expressednonverbally between spouses, persons with ALSmight not need the technology to achieve thesepurposes. They might rely on other modes ofexpression, low tech or no-tech options, for thevery personal messages between spouses.

Four Categories of Social Interaction

Reviewing the 17 purposes with respect to foursocial interaction categories deserves attention,as well (Light, 1988). The two purposes with thehighest median frequency of use scores involvedregulating the behavior of others for basic needsand wants. They were clarifying needs withcaregivers and getting needs met. Clearly, com-municating basic needs is a critical issue aspersons with ALS become dependent on care-givers and lose the physical or verbal control oftheir environment. It is interesting to note,however, that communication for developingsocial closeness and the exchange of informationwere also highly rated. AAC technology wasperceived by informal caregivers to assist theuser and his or her close friends and family toretain their relationships, express their personal-ities, and reinforce their expectations oncommunication. We learn that, in the face ofchanging physical and speech skills, AACtechnology can be used to help communicatorsand their partners to maintain their premorbidroles and relationships.

Median importance scores were more diversethan frequency of use scores. The highest medianimportance scores included three purposes inthe expressing basic needs category: gettingneeds met, clarifying needs, and giving instruc-tions. Mid-range scores addressed purposes inthe information transfer, social closeness, andetiquette categories. Low importance scoresincluded one basic need (calling for help), twoinformation transfer purposes (conversing aboutwork and religion), and three social closenesspurposes (telling stories, having casual conversa-tion, and being romantic). Although the highestrated purposes in importance to caregivers werein the basic need category, there was noclear pattern of perceived importance for AACtechnology when the social categories of commu-nication are examined. Again, the level of speechseverity, the different definitions of the caregivingroles, a presumed joint responsibility to thecaregiving role by some dyads, and the level ofdependency on the informal caregivers by somepersons with ALS, all may have resulted in thevariation in the perceived importance of socialinteraction categories.

Mode of Communication

In the upcoming sections we report on modes ofcommunication used with AAC technology. Ourscale asked participants to report the frequency,importance, and mode of AAC technology usefor each purpose. We can report only thepercentage of face-to-face communication withAAC technology; it is important to state that wedid not collect data on other communicationmodes used during face-to-face interactions.As shown in Figure 3, the majority of

respondents (more than 60%) reported thatpersons with ALS used AAC technology forface-to-face communication across all purposes.The use of other techniques varied. Of those whoused AAC technology to talk about work, 14.3%used written messages and 28.6% used e-mail.E-mail also was used by 33.3% to stay connected,27.3% to tell stories, 20% to converse abouthealth care, by 15% to comfort others, and 17.6%to talk about religion. Writing was used by 19.2%of those who used AAC technology to discussimportant issues and by 17.6% for talking aboutreligion, but it was used by less than 15% of therespondents for all other purposes. Telephone usewas reported only by one respondent, who used itfor clarifying needs with the caregiver.Face-to-face communication was reported as

most critical in the caregiving setting. It isinteresting to note that face-to-face communica-tion is less permanent than either writing or email,

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and requires direct attention by the dyad duringthis time dependent exchange. Message genera-tion with the modes of email and writing are notdependent on time, do not require the presence ofthe communication partner, and are permanent.AAC professionals often investigate techniques tospeed up the rate of communication for sponta-neous conversation. AAC users with acquireddisabilities who formerly relied on speech oftenreport their frustration with the slow augmentedconversational rates. Still, when we asked parti-cipants in this sample about how AACtechnology was used, face-to-face was the mostfrequently used mode of communication.Perhaps the requirements of the caregiving

relationship dictate use of face-to-face commu-nication, and the interaction is so valued, that thetime constraints become less burdensome. Wecannot ignore the use of the other modes ofcommunication for specific purposes, however.Since persons with ALS have expectations aboutthe power and urgency of verbal interaction forevery communication purpose, all possible modesof communication should be available, even ifthey are infrequently used.

Research Implications

This study investigated the perceived frequency,importance, and modes of AAC technology usefor achieving a variety of communication inter-actions as reported by caregivers of persons with

ALS. Data provide empirical evidence from thecaregiver perspective that has been lacking in theAAC field. Previous reports of AAC technologyuse have been obtained with persons with ALS asinformants, or have used data that were collectedpost hoc. This study used a rigorously designedsurvey tool to collect responses from informalcaregivers.The Communication Device Use Checklist

developed for this study could be used to measureoutcomes for persons with ALS who use AACtechnology, and to provide evidence of thepragmatic uses of AAC technology by personswith ALS. This instrument resembles the INCH:Interactive Checklist for Augmentative Commu-nication (Bolton & Dashiell, 1984). Both surveysare tools to document AAC use, and can becompleted at different times and in variousenvironments. While the INCH quantifies modesof communication from behavior to equipmentuse, the Communication Device Use Checklistquantifies purposes of interaction with AAC.Advocates for AAC technology use by persons

with neurodegenerative disease may assume thatmore is better. That is to say, if more commu-nication purposes are expressed with AACtechnology, then interactions may be consideredricher, more substantial, and more successful. Infact, we do not know whether persons with ALSwho rely on AAC technology and their familiesfeel successful with their communication, orwhether the number of communication purposes

Figure 3. Percentage of caregivers reporting modes used for 17 purposes of communication.

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expressed can even be used as a measure ofsuccess. It would be intriguing to design aresearch study to examine users’ and caregivers’perceptions of interaction success based on thenumber, diversity, or range of communicationpurposes expressed with AAC technology. Ad-ditionally, psychosocial measures could beexamined in relation to communication purposes.It is possible that quality of life for persons withALS and caregivers may differ according to thefrequency of communication to achieve differentpurposes. For example, quality of life for personswith ALS may be related to the frequency ofcommunication for social closeness, but care-givers’ quality of life may be related to frequencyof communication to meet basic needs. Further-more, the research could be extended tocomparisons between the number, diversity orrange of communication purposes expressed bynon-disabled populations without AAC technol-ogy, and the communication purposes expressedby AAC users with multi-modal communication,with and without AAC technology.This tool could be used longitudinally as well,

to determine if there are changes in the frequencyand importance of different communicationpurposes at different stages in disease progression.As ALS progresses, do persons with the diseaserate the frequency and importance of device usepurposes differently? Fox and colleagues (2005)have examined communication purposes in rela-tion to severity of ALS. In a between subjectsanalysis, they found that there is a relationshipbetween ALS severity and some of the commu-nication purposes identified as most importantand most frequently used. For example, as theability to speak declines, importance and fre-quency of communication to achieve basic needsincreases.

Clinical Implications

A number of clinical implications emerge fromthese data. First, respondents in this studyreported that AAC technology was used primarilyfor face-to-face interaction; however, writing andemail were used by a moderate number of personswith ALS for selected purposes. In particular,email was often used to achieve social closenessand to convey new information. It will beimportant to assess each person’s current, past,and openness to future use of email to determinewhether there are opportunities for using thatmode to maintain and strengthen social bonds aspersons with ALS lose mobility.The data also suggest that interventionists will

do well to identify the specific communicationpurposes that are important to each person with

ALS and his or caregiver during the AACassessment process. Some persons with ALS andtheir caregivers will want to use AAC technologyfrequently to meet basic needs, but these data, aswell as research findings of Murphy (2004) andMathy and colleagues (2000), suggest that othersmay prefer to use speech, unaided, or simpleaided methods to communicate about a range ofsocial purposes. In addition, the findings of thisstudy suggest that if AAC technology is available,most persons with ALS will use it to stayconnected with family and friends and to discussimportant issues. Interventionists will facilitateuse of technology for these and other high-priority purposes by identifying potential part-ners, environments where communication is likelyto occur, and by carefully assessing the kinds ofmessages people with ALS need to achieve eachof their high priority communication purposes.The Communication Device Use Checklist can beapplied to facilitate this process in the clinicalevaluation. In addition to aiding the process ofidentifying important areas of communicationneed and guiding message selection, assessing theimportance of communication purposes mayassist in device selection for dyads that want touse AAC technology.The checklist may also be useful for identifying

discrepancies between partners’ interaction ex-pectations. Iris Fishman, as part of her work withthe ALS Association’s Speak Up! Project, de-scribed one example of the clinical use of thechecklist. A 65 year-old man named Milt hadpresented with moderate dysarthria secondary toALS. He had recently acquired the LightwriterSL87TM for spontaneous expression. His wife,Claire, complained about the device during anAAC treatment session. Claire reported that Miltnever used his device and that she didn’t want tonag him about it anymore. When Claire and Miltwere asked to complete the CommunicationDevice Use Checklist separately, it became clearthat they had different expectations for deviceuse. Claire wanted Milt to use the device todiscuss new information. Milt only was willing touse the device to get his immediate needs met. Theobjective information available from the com-pleted checklist helped Milt and Claire tounderstand differences in their priorities andprovided an opportunity for them to change theirinteraction expectations related to the device(I. Fishman, personal communication, November16, 2003).Use of the checklist could guide follow-up

treatment, as well, if the tool is administeredlongitudinally. While the current research did notaddress persons with ALS or caregiver trainingwith the AAC technology before or during use,

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it is possible that purposes of communicationshift as the user and caregiver become morefamiliar with the equipment and its potentialusefulness. Administration of the checklist pre-and post-intervention would help to determinethe effect of training on AAC use.The Communication Device Use Checklist may

have implications beyond the ALS population.For example, it is applicable to caregivers andadults with dysarthria who use AAC, regardlessof diagnosis; and may be useful for persons withstatic conditions such as cerebral palsy or brainstem strokes, as well as persons with improvingneurodegenerative disease conditions (traumaticbrain injury or Guillain-Barre Syndrome). In-deed, this checklist can be used with any personwith severe dysarthria or anarthria over time todocument changes related to the frequency andimportance of different communication purposesthat occur.In addition, support personnel working in

group homes, supported employment, or inde-pendent living settings with adults withdevelopmental disabilities who use AAC technol-ogy may be helped to better understand theirinteractions with the AAC user through the use ofthe checklist. Nurses and certified nursing assis-tants who support persons in skilled nursingfacilities might be motivated to change theirinteraction styles if they understood the variouspurposes of communication and could use thechecklist to assess their communicative interac-tions with care recipients. Mismatches canindicate where to direct treatment, so that thereis a common expectation. For example, the jobcoach who is working with a young woman whorelies on a speech generating device because of atraumatic brain injury might discover that co-workers are only expecting communication re-lated to basic needs and wants while the deviceuser is requesting communication to developsocial closeness. The home health nurse whovisits an elderly individual with aphasia who relieson a communication book for interacting with hisdaughter might show the family that basic needsand wants are not the only purposes of commu-nication that are important in social situations.The checklist permits some quantification of theconcepts of frequency and importance of differentcommunication purposes, and can be easilyunderstood by caregivers and many care recipi-ents to increase satisfaction with communicationand, ultimately, quality of life.

Acknowledgements

This project is funded by subcontract fromthe University of Washington/RehabNet-West

through NIH/NICHD/NCMRR #R24HD39629.We wish to thank the persons with ALS and theirinformal caregivers for participating in this surveyresearch. We are grateful to Amy Roman, CCC/Sp for identifying participants in the San Fran-cisco area.

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APPENDIX

Communication device use checklist: Purposes.

Communication purpose Frequency Importance Mode

Expressing needs and wantsCalling for helpGetting needs metClarifying needs withcaregivers

Giving instructions ordirections to others

Exchanging informationDiscussing importantissues or concerns

Conversing abouthealth care

Conversing about workTalking about religious orphilosophical issues

Developing social closenessExpressing feelingsStaying connected withfamily and friends

Telling storiesChattingHaving casual conversationComforting othersBeing funnyFlirting or being romanticFulfilling social etiquetteBeing politeOther (please specify)

Key: Frequency: 1¼ occasionally, 2¼weekly, 3¼ daily, 4¼hourly.Importance: 1¼ unnecessary, 2¼ optional, 3¼ desirable, 4¼mandatory.Mode: F¼ face-to-face, W¼written, T¼ telephone, E¼ e-mail.

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