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Assistive Technology: The Official Journal of RESNAPublication details, including instructions for authors and subscription information:http://www.tandfonline.com/loi/uaty20

Psychosocial Impact of Electronic Aids to Daily LivingJeffrey Jutai Ph.D. a , Patty Rigby M.H.Sc. a , Steve Ryan P.Eng. a & Shone Stickel M.Sc. aa Bloorview MacMillan Centre , Toronto, CanadaPublished online: 22 Oct 2010.

To cite this article: Jeffrey Jutai Ph.D. , Patty Rigby M.H.Sc. , Steve Ryan P.Eng. & Shone Stickel M.Sc. (2000) PsychosocialImpact of Electronic Aids to Daily Living, Assistive Technology: The Official Journal of RESNA, 12:2, 123-131, DOI:10.1080/10400435.2000.10132018

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APPLIED RESEARCHAsst Technol 2000;12:123-1 31

© 2000 RESNA

Psychosocial Impact of Electronic Aids to DailyLiving

Jeffrey Jutai, Ph.D., Patty Rigby, M.R.Sc., Steve Ryan, P .Eng., and Shone Stickel, M.Sc.

Blooruiew MacMillan Centre, Toronto, Canada

Electronic aids to daily living (EADLs) allow personswho have a degenerative neuromuscular condition suchas Duchenne's muscular dystrophy to operate a wide va­riety of household and workplace appliances without as­sistance (independent of family members or other care­givers). There is very little published research to describehow well EADLs are perceived by users to enhance theirsense of personal autonomy, functional independence,and psychological well being. Psychosocial impact is asignificant determinant of how users perceive the benefitof assistive devices to their quality of life. This studycompared the perceived psychosocial impact of EADLson a group of device users with the anticipated impactof EADLs reported by a group who were eligible for, buthad not yet received, these devices. The perceptions ofthe user group were measured at two points in time,approximately 6 to 9 months apart, to examine the sta­bility of psychosocial impact. The Psychosocial Impactof Assistive Devices Scale was the instrument used toassess perceived impact. EADLs were found to producesimilar degrees of positive impact on users and positiveperceptions of anticipated impact on those without de­vices. The psychosocial impact on users was stable overtime. The results indicate that the perceived benefits ofEADLs to the autonomy, functional independence, andpsychological well being of both users and nonusers arepositive and strikingly similar. The study is an importantfirst step in attempting to quantify psychosocial out­comes for EADLs in a way that might facilitate economicanalysis of these devices in the future.

Key Words: Muscular dystrophy-Electronic aids todaily living-Outcome measures-Quality of life.

Electronic aids to daily living (EADLs) are animportant category of assistive technology (AT),

Addr ess corre spondence and reprint request s to Dr. Jeffrey Ju­tai, School of Occupational Therapy , Faculty of Health Science,Universi ty of Western Ontario, Elborn College, London <Ontario)N6G 1H1, Cana da.

yet their contributions to functional and psycho­social outcomes have not been well researched.EADLs can be defined as electronic devices thatare used to access, operate, and control technolo­gies for comfort, communication, leisure, and per­sonal security (Lange, 1999). Also known as envi­ronmental control devices, EADLs allow personswith a severe physical disability, such as musculardystrophy or spinal muscular atrophy, alternativeaccess to a wide variety of household and work­place appliances independent of assistance fromfamily members or other caregivers. Remote ac­cess telephones and emergency alert devices areamong the types of EADL most commonly recom­mended. EADLs are normally recommended forpersons whose disabilities severely restrict theirfunctional independence, as a means of improvingtheir opportunities to engage in daily activities oftheir choice and of freeing their caregivers to doother things (Platts & Fraser, 1993). EADL tech­nologies are not often supported by third-partypayers and can be expensive to purchase, install,and maintain in good working order. This meansthat service providers often feel constrained in rec­ommending EADLs to their clients. Because it isnecessary to choose from among several service op­tions, reflecting a wide range in cost , it has becomevery important to know what sorts of outcomes aretypically associated with the options of choosing ornot choosing an EADL.

EADLs, like other forms of AT, are designed toprovide important functional benefits and improvethe quality of life for people who use them. How­ever, research has shown that people will some­times reject or abandon what seem to be well-de­signed and functional devices (Cushman & Scher­er, 1996; Murphy, Markova, Collins, & Moodie,1996; Phillips & Zhao, 1993; Scherer, 1996). The

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possible consequences of nonuse of prescribed tech­nologies can be very serious. They include the lossof functional abilities of the user, increases in at­tendant and other care costs, and ineffective use offunds from provider organizations. Assistive tech­nology might be threatening to some people andproduce feelings of helplessness, frustration, andloss of control (Kerrigan, 1997). For these reasons,AT designers and practitioners need to better un­derstand the psychosocial factors that might de­termine device adoption, retention, and abandon­ment. Moreover, the field of AT needs measuresthat can be comfortably included in a comprehen­sive assessment of outcomes (J utai, Ladak, Schul­ler , Naumann, & Wright, 1996).

The most important perspective on how AT af­fects quality oflife is th e perspective of the deviceuser (Bell & Hinojosa, 1995). We define quality oflife impact as the effect of the technology on "thedegree to which a person enjoys the important pos­sibilities of his/her life" (Renwick, Brown, & Ra­phael, 1994, p. 35). An assistive device will pro­mote good quality of life for the user to the extentto which it makes the user feel competent, confi­dent, and inclined (or motivated) to exploit life'spossibilities (J utai, 1999). This definition seems toinclude the essential elements of perceived EADLimpact that have been reported by users and theircaregivers (Cowan & Turner-Smith, 1999) andhave been described as indirect benefits of thesedevices (Harmer & Bakheit, 1999).

The research reported in this article is part ofseveral linked investigations into the outcomes as­sociated with the use of EADLs , which include aqualitative research study that explored the qual­ity oflife ofEADL users and nonusers (Rigby, Ren­zoni, Ryan, Jutai, & Stickel , 2000 ). In the study re­ported here, subjects with a degenerative neuro­muscular condition completed a rating scale thatexplored the impact of EADLs on psychologicalwell being and its relationship with perceivedquality of life.

According to one authoritative source, indepen­dence is defined as the subjective perception of be­ing able to carry out life's activities within a nor­mal community setting and of having access tochoices about these activities (National AdvisoryCouncil on Aging , 1989). EADLs would appear tobe forms of assistive technology (AT) whose poten­tial benefits to users would be more obvious andless stigmatizing than devices such as hearing aidsand wheelchairs (J utai, 1999). Therefore, onewould expect that users' expectations should equalor exceed, but should not be smaller than, per­ceived impact following adoption ofEADLs. In this

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study, we used the Psychosocial Impact of Assis­tive Devices Scale (PIADS)- a tool specifically de­signed to measure subjective perceptions of assis­tive device impact that include effects on indepen­dence.

Apart from eyeglass and contact-lens wearers,persons who have amyotrophic lateral sclerosisand other forms of degenerative neuromusculardisease have been the largest of the clinical popu­lations studied to date using the PIADS (J utai &Gryfe , 1998). These populations provide a rigoroustest of the specificity of the PIADS for assessingthe impact of EADLs as opposed to the impact ofillness. If EADLs act independently of the user'shealth status to promote positive perceptions offunctional independence and psychological well be­ing, then PIADS scores should remain stable (orpossibly increase) over time despite an obvious andinevitable decline in health.

In this article, we use the term "low technology"to refer to both no-tech and low-tech interventions,as defined by Lange (1998) to include EADL equip­ment without batteries or electricity and devicesthat involve simple technology to either augmentdirect motor access (e.g., a switch control for a bat­tery-operated toy) or simplify cognitive require­ments (e.g., TV remote control with larger buttonsand fewer choices ). High technology is more so­phisticated and includes integrated EADLs used toaccess, operate, and control electronic devices suchas telephones, radio-controlled devices , door open­ers, and security systems.

RESEARCH QUESTIONS

Our study tested the following hypotheses:

(1) EADL users report a positive psychosocial im­pact from their devices.

(2) The psychosocial impact of EADLs is stableover time.

(3) The anticipated psychosocial impact ofEADLsshould closely resemble the impact reportedfollowing device adoption.

Across all analyses, we expected that the impactwould be greatest for perceived functional perfor­mance, compared with other psychosocial areas.

METHODS

Design

We compared two preexisting groups of personswho have a degenerative neuromuscular disorder,a group of EADL users and a group with compa­rable clinical characteristics but who had not yet

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TABLE 1. Demographic and clinical information on research participants

EADL nonusersEADL users

Variable (n = 21) Time 1 (n = 20) Time 2 (n = 16)

Mean age (years) 27.5 (SD = 11.8) 31.0 (SD = 10.1) 32.4 (SD = 10.6)Sex 71%M, 29% F 80%M, 20% F 81% M, 19% FDiagnosis

DMD 71% 70% 69%Oth er MD 5% 5% 6%SMA 24% 25% 25%

Martial statusSingle 86% 95% 100%Married 14% 5% 0%

Mean FIM® scoreTotal 60.1 (SD = 5.4) 57.1 (SD = 4.6) 57.1 (SD = 4.7)

Motor Skills 25.2 (SD = 5.3) 23.3 (SD = 3.8) 23.0 (SD = 4.2)Cognitive Skills 34.9 (SD = 0.4) 33.8 (SD = 1.7) 34.1 (SD = 1.4)

EducationWith college or university degree 29% 40% 32%With high school as highest degree 38% 30% 31%

Living situationAlone 19% 50% 50%With partner 0% 10% 12.5%With family 61.9% 10% 0%With attendant 4.8% 5% 6.3%With family and attendant 9.5% 5% 0%With friend 0% 5% 6.3%Health care institution 4.8% 15% 25%

Level of care requiredOn call 24 hours per day 95% 90% 100%Continuous 24-hour care 5% 10%

EADL devices used1 None (other than 15.8% 20%2 a telephone or 42.1% 46.7%3 or more emergency 42.2% 26.7%

alert device)

received EADLs. They were recruited from the to­tal population of EADL users and potential usersin the greater Toronto area known to sources in­cluding assistive technology clinics, attendant careregistries, and the Muscular Dystrophy Associa­tion . We defined an EADL user as a person whocould reliably control a telephone or emergencyalert device and at least one other output technol­ogy, as determined by an assistive technology spe ­cialist. The user group was interviewed twice overa period of time that ranged between 6 and 9months following their initial interview.

Instrumentation

The PIADS (Day & Jutai, 1996) is a 26-item,self-rating questionnaire designed to measure userperceptions of how assistive devices affect qualityof life. It is intended to be a generic measure, ap­plicable to virtually all forms ofAT. The PIADS de-

scribes user perceptions along three dimensions.Adaptability refers to the enabling and liberatingeffects of a device . Example items are "Eagernessto try new things" and "Ability to adapt to the ac­tivities of daily living." Competence refers to theimpact of a device on functional independence, per­formance , and productivity. Example items are"Efficiency," "Independence," and "Usefulness."The self-esteem subscale includes items such as"Self-confidence" and "Self-esteem." This subscalealso refers to the extent to which a device has af­fected emotional well being (e.g., "Fru stration" and"Happiness"). Scores can range from -3 (maxi­mum negative impact) through zero (no perceivedimpact) to +3 (maximum positive impact). A num­ber of studies have demonstrated that the PIADSis a reliable, valid, and responsive measure (Day &Jutai, 1996; Day, Jutai, Woolrich, & Strong, inpress) with good clinical utility (Gryfe & Jutai,

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TABLE 2. Numbers of EADL users and nonuserswho could not access electronic devices at home

Sample

The research participants were 41 young adultswho had been diagnosed as having a progressiveneuromuscular condition. They were recruitedthrough assistive technology services located in

1999,2000). The PIADS is a sensitive and respon­sive measure of the impact of a wide range of ATin popu lations of adults who have various forms ofdisability and medical condition (J utai, 1999). Re­sponsiveness refers to the ability of the measure todetect minimal yet clinically important changeover time (Guyatt, Walter, & Norman, 1987).

Call system: cannot call for help 1 (5%) 18 (86%)using lifelin e, call bell , or EADLtelephone or telephone controlledby EADL

Phon e: cannot operate phone using 2 (10%) 21000%)EADL, although may ha vespeaker phone and use withmouthstick

Audio-visual equipment: no control 4 (20%) 21 (100%)of AV equipment (e.g., TV, VCR,ste reo) via EADL system al-though may be using regular re-mote

Door opener: cannot leave and re- 5 (25%) 14 (67%)ente r home ind ependently usingsepara te door opener

Lighting: no control of lighting in 7 (35%) 21 (100%)home through EADL, althoughmay use mouthstick

Computer : cannot turn on/ofT com- 13 (65%) 21 (100%)puter with EADL, although maybe using a mouthstick

Heating and ventilation: no control 13 (65%) 21 (100%)of heating and ventilationthrough EADL

Powered bed: no control of position 18 (90%) 21 (100%)of bed through EADL

the greater Toronto area. Most (29/41) had a di­agnosis of Duchenne's muscular dystrophy (DMD).The rest had a diagnosis of either spinal muscularatrophy (SMA; 10/41) or limb girdle muscular dys­trophy (MD; 2/41). There were 20 participants inthe EADL user group and 21 in the EADL nonusergroup. At the time of first interview, the averagelength of device use by the EADL users was 4 years(minimum of 2 months to a maximum of 8 years).The two groups had similar mean ages and meanscores on the Functional Independence Measure(FIM@J) (Uniform Data Set for Medical Rehabili­tation, 1996). As observed on the FIM , all partici­pants were almost completely dependent in occu­pations of self-care. Most had very little hand andarm function, which restricted their ability to feedand groom themselves and to manipulate manualswitches and remote controls. Some used mouthsticks for switch access.

Participant characteristics are summarized inTable 1. Statistical analysis revealed that EADLusers were more likely to be living alone in thecommunity than were nonusers. There were noother significant differences between groups. Six­teen of the original 20 EADL users participated ina second interview. Of the four users who had nofollow-up, three had died and one had entered thehospital and was unavailable for interview.

There was a variety of types of EADLs used bythe research participants, ranging from direct ac­cess systems, such as the X-10 (X10 Wireless Tech­nology, Inc., Seattle WA) remote control, to inte­grated voice access systems, such as the Quartet(Quartet Technology Incorporated, Tyngsborough,MA), and computer access systems, such as the Im­perium (InterAct Plus, Huntsville, AL). We adapt­ed items from the Lincoln Outcome Measures forEnvironmental Controls scale (Potter , unpub­lished manuscript) to summarize home electronicdevice use by the EADL user and nonuser groups.Table 2 compares the numbers of group memberswho were or were not able to use an EADL for ac­tivities relating to comfort, communication, homesecurity, and occupation.

EADLusers nonusersEADL

Electronic device

TABLE 3. Statistical comparisons with test values from Day and J utai (1996)

EADL Mean95% confidence interval

PIADS sca le study mean SD Test value df Significance difference Lower Upper

Compete nce 1.83 0.77 1.12 5.90 40 0.000 0.71 0.468 0.955Adaptability 1.44 0.93 0.64 5.46 40 0.000 0.80 0.500 1.090Self-est eem 1.60 0.84 0.34 9.61 40 0.000 1.26 0.998 1.530

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TABLE 4. MANOVA on test-retest data from EADL users

Effect Multivariate statistic Value Fvalue df Significance

Test period Pill ai 's trace 0.065 1.042 1, 15 0.324Wilk's lambda 0.935Hotelling's trace 0.069

PIADS subscale Pill ai's trace 0.517 7.487 2, 14 0.006Wilk's lambda 0.483Hotelling's trace 1.070

Test X PIADS interaction Pillai's trace 0.Q18 0.129 2, 14 0.880Wilk's lambda 0.982Hotelling's trace 0.Q18

Data Collection

Interviews were conducted in the home of eachparticipant with the following exceptions. One per­son in the EADL user group was interviewed whileattending an appointment at a rehabilitation cen­ter and had a repeat interview conducted by tele ­phone. Two members of the EADL nonuser group,recruited from the same treatment center, were in­terviewed while receiving care at that center. Athird EADL nonuser was interviewed by tele ­phone.

Although the PIADS is a self-report measure, itwas administered in a face-to-face interview for­mat to accommodate the difficulty that partici­pants had in using a pen or pencil to complete thetask. The interviewers marked the PIADS ques ­tionnaire as directed by the participants to indi­cate their responses. Each interviewer was an ex­perienced therapist who was not a service providerto the participant. Four therapists took part in the

2.5 ,------ --- - _ _ ~iLl(f)

PIAD S Subscale

I• Compete nce

I* Adapta bility

I. 5 oi-_~ ~ ~_----.J 0 Self-esteem

FIG . 1. Mean PIADS subscale scores obtained from thegroups of participants. The time interval between psycho­social impact assessments for the EADL users ranged from6 months to 9 months.

interviewing (three occupational therapists andone physical therapist). The PIADS was part of aninterview protocol that included a semistructuredinterview. The interview was designed to help en­rich the personal context for data collection by ex­ploring the participant's daily living experiences,views about autonomy and attendant care, andknowledge of an d experiences with EADL technol­ogies (Rigby et al., 2000). Nonusers were asked touse the PIADS to indicate the anticipated psycho­social impact of using EADLs (cf., J utai, 1999).

RESULTS

The power of the statistical comparisons of in­terest to this study was calculated according toprocedures recommended by Borenstein (1997),Borenstein, Rothstein, and Cohen (1997), an d Co­hen (1992). Selected effects for each analysis werechosen as the smallest effect that would be impor­tant to detect, in the sense that any smaller effectwould not be of clinical or substantive significance.It was also assumed that this effect size was rea­sonable, in the sense that an effect of this magni­tude could have been anticipated in light of pre­vious research.

Hypothesis 1: Positive Impact from EADLs

Figure 1 shows that there was a positive psy­chosocial impact from EADLs. Mean scores andstandard deviations (SDs; in parentheses) on thecompetence, adaptability, and self-esteem sub­scales, respectively, for the nonuser group were1.83 (0.70), 1.45 (0.92), and 1.74 (0.81). For theuser group at the time of first assessment, meanscores and SDs on the subscales were 1.83 (0.86),1.42 (0.97), and 1.46 (0.87). At follow-up , meanscores an d SDs for the user group were 1.79 (0.78),1.39 (0.93), and 1.55 (0.85).

To give some context for the levels of impactshown in Figure 1, we decided to compare themean scores obtained from this study wit h those

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TABLE 5. Pairwise comparisons on test-retest PIADS scores from EADL users

Comparison

Com pe tence ve rsus adaptabilityCom peten ce ve rsus se lf-es teemAd aptability versus se lf-esteem

95 % confidence interval

Mean Standardfor difference

difference error Significance Lower bound Upper bound

0.367 0.098 0.002 0.159 0.5750.259 0.095 0.016 0.059 0.462

-0.108 0.107 0.327 - 0.336 0.119

from previous research on another population ofassistive device users. Mean PIADS subscalescores from a large, normative sample of eyeglasswearers ranged between 0.34 and 1.12 (Day & Ju­tai , 1996). The samples of EADL users and eye­glass wearers were comparable in age but obvious­ly could not be matched on disability status andother clinical variables. The purpose of the analy­sis was to see if PIADS scores from EADL userswere not only positive but also significantly higherthan scores that are typical of users of the lowestof low technology devices we have studied to date.

Table 3 presents the results from one-sample t­tests! done for each PIADS subscale to comparescores from this study with those reported for eye­glass wearers by Day and Jutai (1996).2

Mean PIADS scores were not only positive andsimilar to those reported for high technology de­vices in other studies (J utai, 1999) but significant­ly larger than those obtained from users of com­parison (low technology) devices such as eyeglass­es .

Hypothesis 2: Stable Positive PsychosocialImpact O ver Time

To see whether the psychosocial impact ofEADLs was stable over time, we tested the null hy­pothesis that the mean difference (or change) with-

I We calculated the power for sta t ist ical comparisons betweenPIADS scores from thi s EADL study and scores from our eyewearresearch. To test th e null hypothesis that th e populat ion mean is1.00, the cri te rion for significance (alpha )was set at 0.05. The testwas one tailed, which mean s tha t only an effect in the expecteddir ection will be interpreted. With th e same size of 41 cases, th estudy had power of 80.9% to yield a stat ist ically signi ficant result.This computat ion assumed th at the populati on from which th esa mple was drawn had a mean subseaIe score of 1.40 with a stan­dard deviation of 1.00. Th e observed value was tested against ath eoret ical value (for eyeglasses) of 1.00. Thus, we had adequ at estatistical power to determine if EADL users perceive a signifi­cantly higher impact from th eir devices th an th e impact felt byeyeglass users from th eir devices.

2 For thi s ana lysis , the sa mples of users (at th e t ime of first as­sess ment ) and nonu sers were combined (n = 41) since th e groupsdid not differ significantly on mean subseaIe scores (see hypothesis3).

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in pairs of PIADS subscale scores was zero ." Thetest-retest PIADS scores from the 16 EADL usersfor whom follow-up data were available were sub­jected to a multivariate analysis of variance (MAN ­OVA). The results are summarized in Table 4.

The analysis confirmed that scores on each of thethree PIADS subscales remained stable over time(i.e., nonsignificant effect of test period). Pairwisecomparisons among the subscales showed that apattern of significantly higher scores for compe­tence relative to adaptability and self-esteem wasalso stable (Table 5).

Hypothesis 3: Similari ty Be tween Anticipatedand Actual Impact

In examining the statistical power for a compar­ison of EADL user and nonuser groups, we testedthe null hypothesis that the two population meanswere equal for each of the three PIADS subscales.'To see how similar the anticipated psychosocialimpact reported by nonusers was to the actual im­pact described by users, we compared the PIADSscores of nonusers with those of the user group(first interview) using a MANOVA. The results arepresented in Table 6.

There were no significant differences betweenthe groups. Pairwise comparisons among the sub­scales showed that, for both groups, scores on com-

3 The crite rion for signi ficance (a lpha) was set at 0.05. Th e testwas one ta iled, which mean s th at only an effect in the expecteddirection of a drop in impact over time would be int erpreted. Withth e same size of 16 pai rs of cases, th e study had power of 83.7%to yield a sta tistically signi ficant result. We were interested in de­tecting a mean chan ge score of at least 0.5 on each PIADS sub­scale. Consequently, thi s computation ass umed th at th e popula­tion from which th e sample was drawn had a mean difference of0.50 (with a stan da rd deviat ion of 0.76). Th e observed value wastested against a th eoretical value (constant) of zero.

, The crite rion for sign ificance (alpha) was set at 0.05. The testwas two tailed, which mean s th at an effect in eit her directionwould be inte rprete d. With sa mple sizes of2 1 and 20 for th e twogroups, th e study had power of 87.7% to yield a stat istically sig­nificant result. Th is compu tati on ass umed th at th e mean differ­ence is 1.0 an d th e common within-group standa rd deviation is1.0; i.e., we wanted to ensure sufficient power to detect a groupdifference of 1.0 score on any of the subsca les.

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TABLE 6. MANOVA comparing PIADS scores of EADL users and nonusers

Effect

Group

PIADS

Group X PIADS interaction

Multivariate statistic Value Fvalue df Significance

Pillai's trace 0.070 0.929 3,37 0.437Wilk's lambda 0.930Hotelling's trace 0.075Pillai's trace 0.306 8.379 2, 38 0.001Wilk's lambda 0.694Hotelling's trace 0.441Pillai's trace 0.066 1.342 2,38 0.273Wilk's lambda 0.934Hotelling trace 0.071

petence were significantly higher than scores onboth adaptability and self-esteem (Table 7). Scoreson adaptability and self-esteem were not signifi ­cantly different from each other.

Throughout the analyses, we had confirmationthat impact was greatest for perceived functionalperformance (competence subscale) compared withother psychosocial areas (adaptability and self-es­teem subscales).

DISCU SSION

Our research provides good evidence to supportthe claim that EADLs contribute significantly tothe user's perceived functional independence .Moreover, EADLs appear to enhance other impor­tant aspects of the user's psychological well being,such as feelings of self-confidence and perceivedcontrol. The findings are consistent with otherpublished research in this area (Cowan & Turner­Smith, 1999; Harmer & Bakheit , 1999). They re­inforce our contention that the PIADS is a validmeasure of how assistive devices are perceived toimpact quality of life.

The positive psychosocial impact reported byEADL users was stable over time. We did not mon­itor the general phys ical condition of the researchparticipants over the period of study . However, wedid observe that some users were using fewer de­vices at the time of the follow-up assessment,which might indicate a decline in functional abili­ty . In other AT studies with this clinical popula-

tion, we have found that positive psychosocial im­pact was sustained over time even though usersexperienced a decline in health and loss offunction(J utai, 1999; cf., also Day et al., in press).

Persons with degenerative neuromuscular con­ditions who were candidates for but had not yet re ­ceived EADLs had expectations of psychosocialbenefit from these devices that were not differentfrom the impact reported by users. This is a pat­tern for anticipated impact that we have observedin this clinical population for high-technology de­vices such as computer-assisted writing aids (Ju­tai, 1999). It contrasts sharply with that obtainedin anticipation of moving into a wheelchair (Jutai,1999) and suggests that EADLs may be associatedwith a lot less stigma than wheelchairs. In thisstudy, we could interpret our finding as evidencethat expectant users have realistic expectations ofpsychosocial impact, with perhaps one qualifica­tion. Nonusers tended to expect a greater impacton self-esteem, self-image, and emotional well be­ing (self-esteem subscale) than the impact report­ed by users. The finding was not statistically sig­nificant but was interesting nonetheless andshould be pursued through further research.

The findings from this study provide a good com­plement to those from a companion investigationon the same groups of users and nonusers. Rigbyet al. (2000) used qualitative research methods toanalyze semistructured interviews conducted withthese participants. They compared the groups on

TABLE 7. Pairwise comparisons on PIADS scores

95% confidence

Mean Standardinterval for difference

Comparison difference error Significance Lower bound Upper bound

Competence versus adaptability 0.397 0.100 0.000 0.194 0.599Competence versus self-esteem 0.231 0.089 0.013 0.051 0.411Adaptability versus self-esteem -0.166 0.107 0.129 - 0.382 0.050

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subjective reports of quality of life with referenceto the conceptual framework developed by Ren ­wick and Brown (1996). EADL users reported ahealthier pattern of relationships and experiencesthan nonusers that the researchers attributed tothe enhanced functional autonomy and occupa­tional opportunities associated with device use.Taken together, the results from these two inves­tigations suggest that the psychological well beingand subjective experience of quality of life for per­sons with degenerative neuromuscular conditionscan be significantly improved specifically throughuse of EADLs.

Our research design had the following limita­tions. We did not sample randomly from the clini­cal population of interest nor were research par­ticipants assigned randomly to the user and non­user groups. Consequently, we cannot estimatehow likely it is that our findings might generalizeto the population of persons who have degenera­tive conditions and who use EADLs. Nor can wesay with confidence that the results of group com­parisons would truly reflect the effects of EADLadoption and not some other factors. It is extreme­ly difficult to ensure random selection and assign­ment in this type of research both for practical aswell as ethical reasons. We recruited from a clientdatabase consisting of virtually all persons whohad a neuromuscular condition within greater To­ronto. Also, we had adequate statistical power forthe analyses we proposed and referred our resultsto those obtained from large samples of AT usersalready studied using these techniques (Jutai,1999).

Our findings suggest several fruitful avenues forfuture research. Many persons who have a degen­erative neuromuscular condition use more thanone type of assistive technology for assistance withmobility, seating, communication, and activities ofdaily living. It would be interesting to assess therelative psychosocial impact of various forms oftechnology for these individuals. We have else­where reported a preliminary indication of signif­icant variations across device categories thatmight have important clinical implications (J utai,1999).

In other research, we controlled for variation inexperience with an assistive device and found thatpsychosocial impact remained stable over time. Inthis study, we did not have large enough samplesizes to analyze psychosocial impact in relation toexperience using an EADL. It would be very inter­esting to compare the PIADS scores on EADLsfrom short-time versus long-time users over an ex­tended period.

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It is not known what type and degree of observedfunctional independence might predict perceptionsof quality of life impact or vice versa. It would beuseful to examine the relationship between func­tional and psychosocial measures ofEADL impact.

Finally, it should be noted that, although thePIADS directs the user to comment specifically onthe impact of an assistive device, it is possible thatreported impacts are a blend of perceptions relat­ing to both the device and the services associatedwith it (Angelo & Trefler, 1998; Demers, Weiss­Lambrou, & Ska, 2000). It would be important toexamine the psychosocial impact of EADLs as afunction of various types and amounts of servicedelivery, including contributions from formal andinformal caregivers.

The PIADS is a reliable and clinically economi­cal measure of the psychosocial impact of assistivedevices. AT practitioners might find it helpful toidentify areas of concern for individual clients (e.g.,where perceived impact does not appear to matchthe expectations of user or practitioner) and dis­cuss them with their clients in relation to the per­sonal and functional significance of these areas.AT clinics might find it useful to examine aggre­gate scores for groups of users over time. Thiscould help identify trends related to the ingredi­ents of the clinical service model and delivery sys­tem.

The nonusers in this study were eligible forEADLs but did not have them largely due to a lackof funding opportunities and options. There arelimited funding resources for these assistive tech­nologies. Our study has taken an important firststep in attempting to quantify psychosocial out­comes for EADLs in a meaningful way for economicanalysis. The significance of these outcomes stemsfrom the fact that, for people with degenerativeconditions, the most important reason for intro­ducing assistive technology is often to promote per­sonal autonomy and preserve dignity (Gryfe & -Iu­tai, 1998). The economic relevance will be deter­mined by the value that payers and society in gen­eral put on this goal for rehabilitation.

ACKNOWLEDGMENTS: The authors grateful­ly acknowledge Bloorview Childrens HospitalFoundation and the Ontario Ministry of Healthand Long-Term Care (through the Ontario Reha­bilitation Technology Consortium), whose gener­ous financial support made this research possible.We want to thank the clients (and their caregiversand family members) from the Electronic Aids toDaily Living Service and the Neuromuscular Pro­gram at Bloorview MacMillan Centre and from

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other rehabilitation agencies in th e Toronto areafor participating in this study. We are grateful, too,for the technical assistance of Mr. William Wool­rich with th e data analysis.

REFERENCES

Angelo, J ., & Trefler, E. (1998). A survey of persons who useintegra ted control devices. A ssist ive Techn ology, 10, 77- 83.

Bell , P., & Hinojosa, J . (1995). Perception of th e impact of as­sist ive devices on daily life of three individuals with quad­riplegia . Assisti ve Techn ology, 7, 87- 94.

Borenstein , M. (1997). Hypoth esis test ing and effect size esti­mation in clinical trials. Annal s o[ Allergy, A sthma and Im ­mu nology, 78, 5- 16.

Boren st ein, M., Roth stein , H., & Cohen, J . (1997). Sample­Power. Chicago: SPSS.

Cohen, J . (1992). A power pr imer. Psycholog ical Bulletin, 112,155-159.

Cowan, D., & Turner-Smith , A. (1999). The user 's perspect iveon the provision of elect ronic assistive technology: Equippedfor life? Br it ish Journal o] Occup ational Th erapy, 62, 2- 9.

Cushma n, 1. A., & Sche rer, M. J . (1996). Measu ring th e re la­t ionship of ass ist ive technology use, functional status overti me, and consumer-therapist perceptions of ATs. A ssist iveTechn ology, 8, 103-109.

Day, H., & Jutai, J . (1996). Measu rin g th e psychosocial impactof assist ive devices: The PIADS. Canadia n Journal o] Re­ha bilitation , 9(2), 159-168.

Day, H.. J utai , J ., Woolrich, W., & Strong, G. (in press ). Thesta bility of impact of ass istive devices. Disabil ity & Reha ­bilita tio n.

Demers , L., Weiss-Lambrou, R., & Ska, B. (2000). Proceedi ngso{ RESNA 2000, Orlando, FL (pp. 319-321). Arli ngt on, VA:Resna Press.

Gryfe, P., & J utai, J . (1998). Assistive technologies: Clients 'percept ions of impact on quali ty ofli fe. Rehab & Com mun ityCare Ma nagement, 7, 26-30.

Gryfe, P., & Jutai , J . (1999, November ). A ssi stive technologyand quali ty o] li fe [or client s wi th ALS / MND. Paper pre­sented at th e 10th Internat ional Symposium on ALSIMND,Vancouver, Cana da .

Gryfe, P., & Jutai , J . (2000, September). PIADS: Issues relat­ing to research and pra ct ice. Paper presented at th e Cana­dian Seating and Mobility Conference, Toront o.

Guyatt, G., Walter , S. D., & Norman, G. R. (1987 ). Measuringchange over time: Assessin g th e usefuln ess of evaluative in­st ruments. Journal of Chronic Diseases, 40, 171-17 8.

Harmer, J. , & Bakheit , A. (1999 ). Ben efits of ECS as perceived

by disabled users and th eir ca rers. Brit ish Journa l of Oc­cupational Th erap y, 62, 394-398.

J uta i, J . (1999). Quali ty of life impact of assistive technology.Rehabil itation En gineering, 14, 2- 7.

Jutai, J ., & Gryfe , P. (1998). Impacts ofassist ive techn ology onclients with ALS. Proceed ings o[ RESNA 1998, Minneap o­lis, (pp, 54-65). Arlington, VA: RESNA Press.

Jutai, J ., Lad ak , N., Schuller , R., Na uma nn, S., & Wright , V.(1996). Out comes measurement of ass istive technologies :Aninstitutiona l perspective. A ssi st ioe Techn ology, 8(2), 110­120.

Kerrigan , A. J . (1997). The psychosocial impact of reh abilita­t ion techn ology. Physical Med icine and Reh abil itati on:S tate o] the Art Reviews, 11, 239-252.

Lange, M. (1998). En vironmen tal controls and AD1. OT Pra c­tice, September, 49-50.

Lange, M. (1999). Electronic aids to daily living. Rehab Report,October , 24-27.

Murphy, J ., Markova, 1., Collins , S., & Moodie, E. (1996). AACsystems: Obstacles to effective use. European Journ al ofDisorders of Com mun ication, 31,31-44.

National Advisory Council on Aging. (1989). Understandingseniors'Lndependence. Report 1: Th e barr iers and sugges ­tions [or action. Ottawa: Ministry of Supply an d ServicesCana da .

Phillips, B., & Zhao, H. (1993). Predictors of assistive technol ­ogy abandonment. Assi st ive Techn ology, 5, 35-45.

Platts , R. G. S., & Fraser, M. H. (1993). Assist ive technologyin th e rehabili tati on of patients with high spinal-cord le­sions . Parap leg ia, 31,280-287.

Renwick, R., & Brown , 1. (1996 ), The Centre for Health Pro­motion's conceptu al approach to qua lity of life. In R. Ren­wick, 1. Brown, & M. Nagler (Eds.), Quality of life in healt hpromotion and reha bili tation: Conceptua l approa ches, is ­sues, and appl ications (pp. 75-86). Thousand Oak s, CA:Sage .

Renwick, R., Brown, 1., & Raphael, D. (1994). Quali ty of life:Linking a conceptua l approach to service provision. Journ alo[ Developm ent al Disab ili ties, 3, 32-44.

Rigby, P., Renzoni, A. M., Ryan , S., J utai, J ., & Stic kel, S.(2000, May). Exploring th e impac t ofelectro nic aids [or dai­ly living up on persons with neuromuscula r cond it ions . Pa­per presented at the Tri-Joint Congre ss 2000 (The Cana dianAssociati on of Speech-Language Pathologist s and Audiolo­gists, Th e Canadia n Association of Occupational Therapi st s,and The Cana dian Physioth erapy Association), Toronto.

Schere r, M. J . (1996). Outcomes of assistive technology use onqua lity of life. Disabil ity & Rehabilitation, 18, 439-448.

Uniform Data Set for Medica l Reh abilita tion. (1996).Guide [orthe Uniform Data Set [or Med ical Rehabil itati on (includ ­ing the FIM@ In strument), Version 5.0. Buffalo, NY: StateUnivers ity of New York at Buffa lo.

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