CME Objectives:Upon completion of this article, the readershould be able to: 1.) Identify key factorscharacterizing the experience of caregiversof assistive technology (AT) users; 2.)Describe the influence of care recipients’ useof AT on the experience of caregivers; 3.)Explain reasons for examining how carerecipients’ use of AT impacts on caregivers.
Level: Advanced
Accreditation: The Association ofAcademic Physiatrists is accredited bythe Accreditation Council forContinuing Medical Education toprovide continuing medical educationfor physicians. The Association ofAcademic Physiatrists designates thiscontinuing medical education activityfor a maximum of 1.5 credits inCategory 1 of the Physician’sRecognition Award of the AmericanMedical Association. Each physicianshould claim only those credits that heor she actually spent in the educationactivity.
A Conceptual Framework ofOutcomes for Caregivers ofAssistive Technology Users
ABSTRACT
Demers L, Fuhrer MJ, Jutai J, Lenker J, Depa M, De Ruyter F: A conceptualframework of outcomes for caregivers of assistive technology users. Am J PhysMed Rehabil 2009;88:645–658.
Objective: To develop and validate the content of a conceptual frame-work concerning outcomes for caregivers whose recipients are assistivetechnology users.
Design: The study was designed in four stages. First, a list of potential keyvariables relevant to the caregivers of assistive technology users was gener-ated from a review of the existing literature and semistructured interviews withcaregivers. Second, the variables were analyzed, regrouped, and partitioned,using a conceptual mapping approach. Third, the key areas were anchored ina general stress model of caregiving. Finally, the judgments of rehabilitationexperts were used to evaluate the conceptual framework.
Results: An important result of this study is the identification of a complexset of variables that need to be considered when examining the experience ofcaregivers of assistive technology users. Stressors, such as types of assis-tance, number of tasks, and physical effort, are predominant contributors tocaregiver outcomes along with caregivers’ personal resources acting asmediating factors (intervening variables) and assistive technology acting as akey moderating factor (effect modifier variable).
Conclusions: Recipients’ use of assistive technology can enhancecaregivers’ well being because of its potential for alleviating a numberof stressors associated with caregiving. Viewed as a whole, this workdemonstrates that the assistive technology experience of caregivershas many facets that merit the attention of outcomes researchers.
Key Words: Self-Help Devices, Outcome Assessment, Caregiver, Theoretical Model
Authors:Louise Demers, PhDMarcus J. Fuhrer, PhDJeffrey Jutai, PhDJames Lenker, PhDMalgorzata Depa, MScFrank De Ruyter, PhD
Affiliations:From the Research Center (LD, MD), Institut universitairede geriatrie de Montreal; School of Rehabilitation (LD),Faculty of Medicine, Universite de Montreal, Montreal,Quebec, Canada; National Institute of Child Health andHuman Development (MJF), National Institutes ofHealth, Bethesda, Maryland; Faculty of Health Sciences(JJ), University of Ottawa, Ottawa, Canada; Department ofRehabilitation Science (JL), State University of New York,Buffalo, New York; and Division of Speech Pathology andAudiology (FDR), Duke University Medical Center,Durham, North Carolina.
Correspondence:All correspondence and requests for reprints should beaddressed to Louise Demers, PhD, Research Center, Institutuniversitaire de geriatrie de Montreal, 4565 Queen MaryRoad, Montreal, Quebec, Canada H3W 1W5.
Considerable data indicate that both assistivetechnology (AT) and human assistance are used bypeople with disabilities to enhance their function-ing.1–5 The principal patterns of assistance includethe use of AT alone, AT in combination with humanassistance, and human assistance alone.5 Using mo-bility as an example, human help can include (1)making preparation for an activity, e.g., removingobstacles from an intended pathway, (2) providingdirect physical assistance with the activity, e.g., partiallysupporting the individual’s body weight during ambu-lation, (3) supervising the execution of the activity, or (4)monitoring from a distance the safety with which anactivity occurs. It is important to note that AT use mayco-occur with human assistance to facilitate perfor-mance of these same activity components.5–7
This study examines the impact of AT on care-givers in the home environment. From both a clinicaland policy viewpoint, a principal justification for pro-viding AT to people with disabilities is that it reducestheir dependence on human assistance. Verbruggeand Sevak5 report that equipment is more efficaciousthan personal assistance in reducing disability. Toappreciate the full impact of AT, one must understandhow caregivers are affected. This view is sup-ported by the Taxonomy of Assistive TechnologyDevice Outcomes8 in which one important area ofoutcomes pertains to caregiving. In the present context,caregiving refers to the nature and amount of effortinvolved in providing assistance for an individual with adisability.
Studies of AT outcome have paid scant atten-tion to the impacts of technology on caregivers ofadult AT users (18 yrs and older). Chen et al.9
examined how older adults with physical impair-ments (n � 20) involved their caregivers in the useof assistive devices and how the older adults andtheir caregivers perceived the value of AT. Thedevices studied were the ones that participants hadreceived in conjunction with customary services.The results indicate that AT may reduce users’dependence on human assistance, as well as someof the burden expressed by family members andfriends. Lansley et al.10 addressed the feasibilityand cost of adapting 82 homes with environmentalimprovements (e.g., wide doors) and AT (e.g., bath-boards), based on the assumption that an impor-tant benefit of such interventions is to substitutefor human input. Concrete effects on reducing carewere imputed to some adaptations, based on theopinions of occupational therapists and otherhealth specialists. The internal validity of the abovestudies is constrained by their use of descriptiverather than experimental designs, and by the lim-ited use of quantified outcomes. Recently, Kirby etal.11 compared two types of wheelchairs from theperspective of 19 caregivers. They found one modelto have better wheelchair handling performance,requiring less exertion, and producing greater sat-isfaction. Although not stated explicitly by the au-thors, the findings suggest that one model ofwheelchair impacted more positively on the care-giving experience. There remains a paucity of re-search evidence to support or refute the claim thatassistive device outcomes include decreased depen-dence on the assistance of specific individuals incommunity-living environments.12
Another category of studies that have exam-ined the connection between AT and caregiving isbased on national survey data. The findings suggestthat use of AT impacts caregivers by supplementingor even substituting for some of the physical andemotional effort entailed in supporting individualswith disabilities.1–4,13–15 As an example, Agree13
found that difficulties with mobility were less prev-alent among older users of AT alone than amongindividuals using personal care alone or a com-bination of both. The strength of these studies isthat they lend themselves to population-basedgeneralizations. Their weakness is that the im-pact of AT use on caregivers is inferred fromresponses to very few queries, principally dealingwith the number of hours of assistance provided.Several impacts are underreported that may re-flect the quality of caregiving. These includephysical demands on helpers, psychologicalstress, and satisfaction in providing help. Theneglect of such potential outcomes hampers ap-
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plications to policy and practice because the ben-efits of AT are incompletely portrayed.
The lack of data reflecting AT impact on care-givers can be partially attributed to the absence ofa fully formed conceptual framework. Measure-ment theorists agree that systematic evaluationshould be grounded in explicit conceptual ap-proaches.16–18 The goal of this study was to developand content-validate a conceptual framework forunderstanding the impacts of care recipients’ useof AT in terms of outcomes reflected in the lives oftheir caregivers. We hypothesized that AT affects thequality of caregiving and thus the caregivers’quality-of-life. A clearer conceptualization of theseoutcomes will allow future researchers to capture theimpacts of AT more comprehensively by taking intoaccount effects on users and caregivers alike.
METHODSThis study included four stages that blended
qualitative and quantitative approaches. First, a listof potential key outcome variables relevant to thecaregivers of AT users was generated from a reviewof the existing literature and semistructured inter-views with caregivers. Second, the variables wereanalyzed, regrouped, and partitioned into compo-nents and subcomponents, using a conceptualmapping approach. Third, the components andsubcomponents were anchored in a general modelof caregiving. Finally, the opinions of rehabilitationexperts were elicited to evaluate the conceptualframework and assess the degree of consensus on itsstructure and contents. The four stages are detailedbelow. The project was approved by the Research andEthics Committees of the Institut universitaire degeriatrie de Montreal (Montreal Geriatric UniversityInstitute) located in Quebec, Canada.
Defining Potential Key OutcomesStudies that jointly considered AT and caregiv-
ers were retrieved. Computerized searches of OvidMEDLINE, Current Contents, and EMBASE throughApril 2007 were conducted with the combinationsof the following MESH key words: caregiver, self-help devices, and assistive technology. Literaturereviews and original research were included. Arti-cles were limited to those in English. This strategyidentified 17 articles. Of these, two articles wereexcluded because they did not identify outcomevariables applying to caregivers whose care recipi-ents were AT users. Table 1 lists the outcomevariables (n � 56) and associated AT devices thatwere abstracted from the remaining 15 articles. Theoutcome variables include those identified by theauthors (n � 26) and those that were inferred fromthe papers’ content (n � 30). Although there were avariety of variables, in many cases similar conceptswere identified by somewhat different wordings.
Semistructured telephone interviews wereconducted with 19 caregivers of AT users, who hadbeen recruited to take part in a larger study relatedto powered mobility devices (12 scooters and 7electrical wheelchairs).27 Sociodemographic char-acteristics of the participants are described in Table2. Their age averaged at 53 yrs, with gender appor-tioned slightly in favor of women. The caregiverswere mostly the spouses or the children of the ATusers, and most were living with the care recipient.The principal areas of assistance in descendingorder of importance were as follows: communityactivities, transportation, domestic activities, andself-care (including mobility). All participatingcaregiver interviews lead to disclosure of AT im-pacts they perceived for themselves. The interviewswere taped and transferred to an MPEG-1 AudioLayer3 (MP3) format. Relevant extracts were tran-scribed and coded using a mixed coding strategy.28
Some codes were based on the literature review,and others were created in response to the emerg-ing content. Finally, the data were regrouped, andsimilar information was synthesized. All analyticaltasks were performed by one author (MD) andreviewed by another author (LD) to ensure reliabil-ity. Table 3 contains the variables and some of thethemes that emerged from the interviews. A total ofeight potential outcome areas were identified: (1)degree of anxiety, (2) amount of assistance, (3) phys-ical effort, (4) degree of concern for the AT user’ssafety, (5) amount of free time, (6) participation inpersonal activities, (7i) participation in shared activ-ities, and (8) quality of relationship with the AT user.
Analyzing ConceptsA conceptual mapping approach was used in this
second stage to organize the variables obtained in thefirst stage. This methodology considers associationsbetween related concepts and the context in whichthey are to be used.28 Using an inductive approach,the outcome variables were analyzed and partitionedinto components and subcomponents, without im-posing any order of priority. The mapping strategywas all-encompassing in that it considered all of thevariables generated by the interviews and found in the15 references captured by the literature review. Twoauthors (LD and MF) performed the analysis. Dis-agreements were reconciled by including the remain-ing authors in a discussion. The mapping of conceptsobtained at this stage is illustrated in Figure 1. Thecomponents (n � 19) listed in the left column arelinked by solid lines to the subcomponents (n � 28)that are seem in the right column.
Anchoring Concepts in a FrameworkIn the third stage, we developed a conceptual
framework for studying the outcomes experiencedby caregivers of AT users. This stage was important
for visualizing the relationships among the vari-ables and for clarifying causal influences on theoutcomes. Its components and subcomponents areanchored in a general model of caregiving that isbased on the Stress Process Model.29 The use of astress model is consistent with the understandingthat caregiving can be a particularly demandingaspect of family life. As a result, many studies ofcaregiving have been guided by theories of stressand adaptation.30 Among them is a study byDemiris et al.23 of caregivers’ use of communica-tion technology. Technology is seen in their studyas directly influencing both caregiver stressors andthe outcomes of caregiving.
The Stress Process Model of caregiving is com-posed of numerous variables that either mediate(by intervening) or moderate (by modifying) therelationship between the stresses of caregiving andcaregivers’ psychological, psychosocial, and physi-cal well being as outcomes. From that standpoint,influences associated with care recipients’ use ofAT comprise only a single subset among many that
bear on the stressors-outcomes relationship. In thenarrative and graphic exposition that follows, weset aside those many other influences (such associodemographic factors) and focused just on theimplications of recipients’ use of AT. This enabledus to restrict the application of the Stress ProcessModel to salient factors that are either directlyinvolved in recipients’ use of AT or that are con-sidered critical for addressing the effects of AT useon the experience of caregiving.
Validating the FrameworkIn the fourth stage of the study, the opinions of
experts were used to evaluate the conceptualframework. Expert review is the most direct ap-proach to establishing content validity.31 For theframework to have content validity, the factorsincluded within each category must be relevant toaddressing AT impacts on caregivers and have gen-erally accepted meaning. Four interdisciplinary re-searchers (not members of the research team) witha strong involvement in AT, caregiving research,
Cook et al.19 Use of safe helping techniques and strategies*; comprehendavailability and use of AT*; prevent falls*; deal withemotional changes*; manage changes in roles*; stayactive*
Assistive devices used by stroke survivors in thehome environment
Ryan et al.20 Reduce effort; allow respite; reduce supervision; decreaseworry about the PWD; increase technology acceptance
Postural control devices
Ostenjo et al.21 Reduce assistance for mobility; reduce assistance for self-care; reduce assistance for social function(communication, safety)
Assistive devices and environmentalmodifications (extensive list)
Berry et al.22 Change means of transportation (personal vehicle)*; dealwith community accessibility problems*; modify homeenvironment*; deal with maintenance problems*; dealwith lack of information*
Power wheelchairs
Hoenig et al.3 Reduce number of hours of assistance Variety of home adaptations and mobility-related devices
Taylor and Hoenig4 Reduce number of hours of assistance Variety of home adaptations and mobility-related devices
Agree et al.1 Reduce number of care hours; reduce number ofcaregivers; reduce number of tasks requiring assistance
Variety of transferring and mobility-relateddevices
Demeris et al.23 Increase QoL*; reduce anxiety*; reduce physicalexhaustion*; reduce physical work*; augment self-caretime*; limit disruptions in personal life*; prevent socialisolation*; prevent lack of privacy*; deal with roleadjustments*; deal with self-identity*
Communication technology, wheelchairs andhome adaptations
Allen et al.2 Reduce number of hours of help; reduce number of helpers Cane, crutches, walkers, and wheelchairsAllen et al.14 Number of hours of help Variety of home adaptations and accessible
parkingAgree et al.24 Enhance QoL; substitute for care; supplement for care
(lessen demands)Variety of devices for basic activities of daily
living and mobilityBenedict et al.25 Satisfaction with device; amount of assistance Large variety of assistive devices including
communication systems and medical devicesLansley et al.10 Increase safety and security of tasks*; reduced amount of
supervision*; reduce amount of help required (bathing,lifting)*; eliminate some tasks*
Large variety of devices and home modifications
Mann26 Make caregiving physically easier;* Make caregivingemotionally easier;* Eliminate tasks;* Reducesupervision time;* Increase safety and comfort*
AT for ADL, IADL, environmental control, andmonitoring health and behavior
Chen et al.9 Save time; conserve energy; reduce frustration with tasks;provide a feeling of security
Large variety of devices and home modifications
*Outcome variable not identified as such by the author(s) but inferred from analyzing the content of the article.
648 Demers et al. Am. J. Phys. Med. Rehabil. ● Vol. 88, No. 8, August 2009
and physical medicine and rehabilitation served asexperts. Small group discussions and individualinterviews were arranged that lasted 1–2 hrs. Theexperts had several comments on the choice offactors, their amenability to being self-reported bycaregivers who were assisting AT users, and theirclassification within the proposed framework. The
revised framework that emerged resonated wellwith both the experts and the researchers involvedin this interactive and iterative validation process.
the interactions among four categories of factors:(1) stressors, (2) caregiver outcomes, (3) moderat-ing factors, and (4) mediating factors. As predictorvariables, the stressors represent the experiencesand activities of caregivers that are problematic forthem. The stressors act as potential threats to care-givers’ well being, the overarching outcome of inter-est. Influences on caregivers’ outcomes are distin-guished according to their hypothesized function asmoderating or mediating factors. Mediating factorsare involved in transmitting causal influence fromstressors to outcome. In other words, they account inpart for the final result.32,33 Moderating factors arethose that affect the direction and the strength of therelationship between stressors and outcomes. Theydo not play a causal role in producing those out-comes.
The framework promotes understanding ofhow the recipients’ use AT and how the back-ground and contextual variables intertwined withthat usage act together as factors that moderate thecausal influence of caregiving stressors on caregiv-ers’ outcomes. Although we acknowledge potentialreciprocal relationships, the direction of influencesis mainly unidirectional, as denoted in Figure 2 bysolid lines with arrows.
StressorsStressors are defined as the conditions, ex-
periences, and activities that are problematic for
TABLE 2 Characteristics of the caregiverparticipants (n � 19)
of the AT userNeurologic 78.9Musculoskeletal 10.5Complex medical 10.5
TABLE 3 Caregivers’ outcome variables drawn from the interviews (n � 19)
Variable Examples of AT Impacts*
Degree of anxiety Experiences less anxiety because the AT user has more autonomy.Experiences less anxiety because the AT user’s safety is improved with the use of AT.Experiences less anxiety because there are fewer demands from the AT user (both for
psychological and physical help).Feels less guilt associated with the caregiver role.
Amount of assistance Needs to provide assistance with fewer mobility tasks because the AT user has become moreindependent.
Physical effort Needs to provide less physical energy when they assist their relative because the wheelchairdoes not have to be pushed.
Needs to provide more physical energy to assist their AT user with transports because thewheelchair is heavier.
Degree of concern for the AT user’s safety Considers that the use of AT increases the safety of tasks.Fear of accidents involving the use of the wheelchair on the road.
Amount of free time Experiences more free time because the AT user is able to do more things on his/her own.Participation in personal activities Considers that she/he participates in more leisure, social activities, and work (domestic)
activities.Participation in shared activities Experiences more enjoyable activities during the time spent with the AT user (e.g.,
shopping, vacation).Quality of relationship with AT user Experiences improved interactions and a more satisfying relationship with the AT user (e.g.,
able to talk side by side while walking instead of being behind the AT user).
FIGURE 1 AT outcomes variables experienced by caregivers mapped in components (n � 19) and subcompo-nents (n � 28). PWD, person with disability.
650 Demers et al. Am. J. Phys. Med. Rehabil. ● Vol. 88, No. 8, August 2009
people.29 Stressors are divided into those that areprimary and those that are secondary.34
The primary stressors comprise factors de-scribing the assistance provided by caregivers tomeet the perceived needs of AT users or of potentialusers. The complex construct of caregiving can becharacterized in terms of areas of assistance (mo-bility, self-care, and communication)21,23 and formsof assistance (hands-on, supervision with verbal cue-ing, and monitoring at a distance).10,20,21,26 Also in-cluded are assistive activity-related and physical func-tioning components that were repeatedly emphasizedin the literature and caregiver interviews as key con-siderations. The components encompass number ofassistive tasks,1,10,24,26 time required for assista-nce,1–4,9,14 safety and security of tasks,10,26 andcaregivers’ physical effort/work.9,10,20,23,26,35 Thesestressors are considered primary because they areembedded in the provision of assistance.
Secondary stressors result from the durableeffects of the primary stressors on caregivers’ lives.The secondary stressors include disruptions of lifethat the literature and caregiver interviews identi-fied as concomitants of providing assistance to anAT user or potential user. Included are perceptionof role overload19,23 and encroachment on the elec-tive use of time.23 Because caregivers and recipi-ents frequently share the same residence, a recip-ient’s use of AT may affect aspects of the caregiver’s
home environment (e.g., decor and storage space).Consequently, home modifications are included asan area of potential stress.
The manner in which recipients’ use of ATdevices may attenuate the effects of both primaryand secondary stressors can be illustrated as fol-lows. If a recipient transitions from using a manualwheelchair to using a scooter, caregiver assistancemay continue to be provided but change from adirect physical mode (pushing the wheelchair) to abackground surveillance mode or to no involve-ment at all. In the latter case, AT is substituting forpersonal assistance. Thus, the new assistance strat-egy involves changes in the form of assistance andin physical effort, both being primary stressors. Atthe same time, additional environmental changesmay be needed to facilitate use of the scooter.Consequently, home modifications (secondarystressors) are likely to be made. Finally, safetyconcerns may decrease and contribute to decreasedanxiety about the recipient’s security, a caregiveroutcome.
Caregiver OutcomesOutcomes are conceptualized as the more dis-
tal effects of the stress process on the well beingand functioning of caregivers. Well being is con-sidered both globally and in terms of its majorcomponents. Influences of the recipient’s use of AT
FIGURE 2 A conceptual framework for understanding outcomes experience by caregivers who assist AT users.
on the caregiver’s global well being include effectson the caregiver’s subjective quality-of-life,23,24
psychological and physical health factors, and onthe individual’s ability to participate in commu-nity life.29 Psychological health includes anxiety/comfort about the person who is the AT user19,20
as well as anxiety9,23,26 and frustration/comfortin providing assistance.9 Physical health includesphysical problems such as back pain or cardiacproblems that result from, or are exacerbated by,the provision of assistance. Participation is im-portant to consider because providing help canaffect the capacity of caregivers to fulfill socialroles, including their involvement in leisure,work, and community life.
Moderating FactorsModerating factors, which in this framework
include AT, may either attenuate or reinforce therelationship between stressors and outcomes. Theinfluence of AT is produced by the amount andmanner of device use by the recipient. Amount ofuse can be quantified in terms of number of de-vices, usage frequency, and duration. Manner ofusage refers to the circumstances in the user’s lifein which the device is used, the skillfulness of thatusage, and its appropriateness, i.e., the extent towhich the device is used within operating condi-tions that are specified for it.
There is much debate about the moderating ormediating role of social support in the caregivers’literature.36–38 In this framework, we endorse aconservative approach and consider social supportas a buffer variable between stressors and caregiv-ers’ outcomes. Social support refers to the atti-tudes of family and community members towardcaregivers19,20 and to the number of caregiverswith whom coordination is necessary.1,2,20 Diverseforms of social support, whether informal or for-mal, are included.34 Instrumental support is poten-tially important to caregivers’ ability to render carein terms of practical physical assistance, materialsupport, or advice about how to manage a situa-tion. Supportive social relationships, such as posi-tive feedback and emotional support, are anotherform of social support that may be important de-terminants of caregiver outcomes.
Other factors are stress moderators as well.Environmental accessibility and living arrange-ments are relevant especially for caregivers whodeal with mobility-related AT. For instance, accom-panying a nonindependent wheelchair user to amedical appointment entails challenges related toparking and to the distance involved in propellingthe wheelchair. The quality of the AT user-care-giver relationship and duration of caregiving arekey variables in moderating the effects of stressfactors on caregivers. Finally, financial capability
has been emphasized as influencing the experienceof caregivers, especially when a financial strain isassociated with the procurement of AT.39,40
MediatorsMediators differ from moderators because they
transmit causal influences from stressors to out-comes. In a stress model like Pearlin’s, caregiverresources are widely recognized mediators of care-giving stress.30 Caregivers can be affected differ-ently by similar caregiving demands.37 Within thepresent framework, caregivers’ personal resourcesthat include coping strategies and self-efficacy ac-count for some of the variation in their reactions.34
Coping is approached in most research by ex-amining the cognitive and behavioral strategiesused by caregivers to react to and manage thestressors embedded in caregiving.41,42 We considerthe AT used by recipients to be a useful behavioralstrategy that affects caregivers’ attitudes and expec-tations about assistance, thereby influencing thestress that they experience.43
Self-efficacy has also been emphasized as animportant stress mediator in the general caregiv-ing literature.37,44 It is an internal resource akin tothe notion of competence, as suggested by thedevelopers of the Psychosocial Impact Assistive De-vices Scale.45 As such, self-efficacy is a potentiallyimportant factor in alleviating the severity of stres-sors. In the present context, self-efficacy concernscaregivers’ assessments of their ability to meetrecipients’ needs, e.g., to provide effective assis-tance in a timely manner.
DISCUSSIONDeveloping a conceptual framework for under-
standing the caregiver outcomes that result fromrecipients’ use of AT proved to be a complex taskwith respect to the methodologic and conceptualissues entailed. This section reviews the methodol-ogy used for its development, discusses the frame-work’s connection with another approach used toexamine AT outcomes, and emphasizes the frame-work’s distinctive contributions.
The methodology used to generate data onpotential outcome variables benefited from com-plementary sources of inputs. First, it combined asystematic literature review with qualitative datafrom caregivers. Outcome variables that werefound in articles published since completion of thisstage of the study are similar in their content andsupport its results. Henderson et al.46 conducted aliterature review of the impact of assistive deviceson child and caregiver function. They identifiedcaregiver outcomes related to personal factors,cost, and social support. In the domain of dementiacare, Duff and Dolphin47 reported caregivers-real-ized benefits that included, among others, time,
652 Demers et al. Am. J. Phys. Med. Rehabil. ● Vol. 88, No. 8, August 2009
areas of assistance, work, quality of life, and burdenof care. Second, the mapping strategy used to an-alyze and partition the concepts was strengthenedby including several authors in a consensus-build-ing process. Third, key outcomes were anchored ina general model of caregiving that designated howthe variables influence one another. The analysisprogressed from a list of relevant but disparatevariables to an integrated framework reflecting thecomplexity of caregiver outcomes. Finally, theframework was examined and was further im-proved by an interdisciplinary panel of experts. Theexperts’ backgrounds in AT, caregiving, and phys-ical medicine, and rehabilitation were critical forachieving a balanced framework that did not favordiscipline-specific outcomes. A similar approach todeveloping a conceptual framework has been usedsuccessfully in geriatric rehabilitation.48
The framework that was arrived at is differentfrom others in the caregiving literature becausemany of them were developed for caregivers ofrecipients with cognitive impairments who may ornot be AT users. Those caregivers provide differentforms of assistance and respond to other kinds ofdemands (e.g., disruptive behavior).49 This studydevoted resources to identifying forms of assistanceand types of outcomes that distinctively apply tocaregivers whose care recipients are AT users orpotential users. At the same time, we ensured aclose linkage between the resulting framework andevolving knowledge in much of the general care-giving literature based on a model by Pearlin etal.29 that has been a major rallying point for re-search in the caregiving field.
Some may question our choice to base theproposed framework on a stress model of caregiv-ing. Other researchers emphasize the positive ef-fects of caregiving on the relationships betweensome caregivers and recipients.50,51 However, moststudies consider caregiving to be a predominantlydisruptive event.52,53 The advantage of a stressframework lies in its ability to capture the varietyof concerns that challenge caregivers’ functioning.The developers of the Family Impact AssistiveTechnology Scale20 take a similar view. Further-more, by formulating variables in the framework inneutral terms, ample provision is made for takingpositive caregiving outcomes into account.
It is useful to consider the present frameworkin relation with another conceptual structure, theTaxonomy of AT Outcomes.8 It suggests that AToutcomes can be effectively operationalized fromthree vantages: effectiveness, social significance,and subjective well being. The social significancevantage identifies effects on caregivers as being apossible result of AT use. However, little elabora-tion is provided about that outcome. The presentframework complements the taxonomy by pin-
pointing factors that are important for compre-hending the experience of caregivers of AT users.The framework is also likely to plan a well delin-eated role in AT outcomes assessment because ithas been researched and developed specifically forcaregivers of AT users.
An important result of this study is the emer-gence of a complex set of variables that need to beconsidered when examining the experience of care-givers of AT users or potential users. Stressors,whether primary or secondary, are the predomi-nant determinants of caregiver outcomes alongwith caregivers’ personal resources acting as me-diators. By itself, a recipients’ use of AT is notsufficient to explain caregivers’ outcomes in termsof quality of life, psychological health factors, phys-ical health, and participation. Our results suggestinstead that AT use comes into play subtly andindirectly as a key moderating factor. This does notdiminish the importance of AT for caregivers. Re-cipients’ use of AT has the potential to influence anumber of prominent stressors, such as forms ofassistance, number of tasks, and the physical effortthat is involved.
The framework highlights a variety of re-searchable questions with implications for clinicalpractice. Using an overhead rail lift system oper-ated by the recipient as an example, the frameworkcould help to address questions such as to whatextent: (1) amount of use impacts various areas ofassistance and the number of caregiving tasks; (2)caregivers’ reduced physical effort affects theirphysical health, and (3) variations in personal re-sources such as coping styles contribute to individ-ual differences in caregiver outcomes. As a secondexample, the distinctions among patterns of assis-tance (e.g., environmental preparation, supervisionwith verbal cues, and monitoring at a distance)lend themselves to the hypothesis that recipients’use of AT may not eliminate the need for assistancebut may alter the pattern of assistance that is beingused. Such questions deserve attention because theresulting knowledge can influence the recommen-dation, funding, and delivery of AT. We also expectthat the framework will foster experimentally de-signed studies in which the effects of AT on care-giver outcomes are systematically monitored andassessed. Finally, it will be important to learn howAT abandonment affects and is affected by caregiv-ers’ behavior and experience.
Our study has certain limitations. First, theinterview data were collected in the context of aproject that included other objectives. The resultsrelating to AT may have been affected by otherquestions included in that project’s interviews.Second, the focus of data collection solely on thehome environment reduces generalization of theresults to other contexts. Third, the situation of
paid staff and caregivers of AT users who are nurs-ing home residents was not considered. A finallimitation concerns the sample of caregivers whowere diverse on many characteristics but whoseassistance was limited to users of powered mobilitydevices. The use of other types of AT by these carerecipients is not documented. Consequently, it isdifficult to gauge the extent to which the interviewdata reflect the realities confronted by many othercaregivers.
The framework is a first step to identifyingpotential factors associated with the AT outcomesexperienced by caregivers. Research is needed nowto test the framework and more precisely the ex-tent to which the recipients’ use of AT, intertwinedwith the other factors, influences caregiver out-comes. There is also the challenge of obtainingmeasurement instruments that correspond to thefactors defined in the framework. Relatively sophis-ticated measures address several of those factorsseparately. However, a need remains for a multidi-mensional AT-specific measure that is derived fromthe framework and that is readily applicable inresearch and clinical practice.
ACKNOWLEDGMENTSSpecial recognition to Rossitza Nikolova and
Malgorzata Depa for their significant contributionsas research assistants, as well as to the expertsJohanne Desrosiers, Nicol Korner Bitenski,Francine Ducharme, and Helen Hoening for theirguidance.
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