Content uploaded by William Bennett Mortenson
Author content
All content in this area was uploaded by William Bennett Mortenson on Nov 09, 2017
Content may be subject to copyright.
How assistive technology use by individuals with disabilities
impacts their caregivers: A systematic review of the research
evidence
W. Ben Mortenson, PhD, MSc., BScOT,
Centre de recherche de l’institut universitaire de gériatrie de Montréal, Montreal, PQ, Canada.
Gerontology Research Centre, Simon Fraser University, Vancouver, BC, Canada
Louise Demers, PhD, MSc., BScOT,
Centre de recherche de l’institut universitaire de gériatrie de Montréal, Montreal, PQ, Canada.
École de réadaptation, Université de Montréal, Montréal, PQ, Canada
Marcus J. Fuhrer, PhD, BA,
Eunice Kennedy Shriver National Institute of Child Health and Human Development, National
Institutes of Health, Bethesda, MD, U.S.A
Jeffrey W. Jutai, PhD, CPsych,
Interdisciplinary School of Health Sciences, University of Ottawa, Ottawa, ON, Canada
James Lenker, PhD, MSc, BSc, BSc, and
University at Buffalo, Department of Rehabilitation Science, Buffalo, NY, U.S.A
Frank DeRuyter, PhD, MA, BA
Duke University, Department of Surgery/Speech Pathology and Audiology, Durham, NC, U.S.A
Corresponding author: Ben Mortenson, PhD, MSc, BScOT, Post-Doctoral Fellow, Centre de recherche de l’institut universitaire de
gériatrie de Montréal & Simon Fraser University Gerontology Research Centre, Vancouver, BC, Harbour Centre 2800, Simon Fraser
University, 515 West Hastings Street, Vancouver, BC, Canada V6B 5K3 Phone 778-782-7634 Fax: 778-782-5066,
bmortens@interchange.ubc.ca.
Author disclosures
Sources of Support
This work was supported by the National Institute on Disability and Rehabilitation Research (grant #H133A060062) and Canadian
Institutes of Health Research (CIHR) (grant # 232262). Personal financial support for Dr. Mortenson was provided by a CIHR post-
doctoral fellowship in the area of Aging and Mobility from the Institute of Aging.
Financial disclosure
We certify that no party having a direct interest in the results of the research supporting this article has or will confer any benefit on us
or on any organization with which we are associated. We certify that all financial and material support for this research are clearly
identified in the title page of the manuscript.
Previous Presentation
Portions of the findings from the study have been presented at two conferences:
a. the 2010 American Congress of Rehabilitation Medicine
Mortenson, W.B., Demers, L., Jutai, J., Fuhrer, F., Lenker, J., DeRuyter, F. (2010). Impacts of assistive technology
interventions on informal caregivers of adults with chronic physical impairments: A systematic review. American Congress
of Rehabilitation Medicine-American Society of Neurorehabilitation Conference, October, Montreal, PQ.
b. and the 2011 Festival of International Conferences on Caregiving, Disability, Aging and Technology.
Mortenson, W.B., Demers, L., Jutai, J., Fuhrer, M.J., Lenker, J. & DeRuyter, F. (2011). Impacts of assistive technology
interventions on informal caregivers. Festival of International Conferences on Caregiving, Disability, Aging and
Technology, June, Toronto, ON.
NIH Public Access
Author Manuscript
Am J Phys Med Rehabil. Author manuscript.
Published in final edited form as:
Am J Phys Med Rehabil. 2012 November ; 91(11): 984–998. doi:10.1097/PHM.0b013e318269eceb.
NIH-PA Author Manuscript NIH-PA Author Manuscript NIH-PA Author Manuscript
Abstract
Informal caregivers are a critical, yet frequently unacknowledged part of the healthcare system. It
is commonly presumed that providing assistive technology (AT) will decrease the burden of their
care provision; however, no review has evaluated the evidence behind this assumption. Therefore,
a systematic reviews was undertaken to evaluate evidence of the impact of AT use by care-
recipients on their informal caregivers. Data Sources included Embase, Medline, Cumulative
Index to Nursing and Allied Health Literature, Web of Science, PsychINFO, and active
researchers in this area. Twenty-two studies met the specified inclusion criteria. Collectively, the
findings suggest that AT use helps caregivers by diminishing some of the physical and emotional
effort entailed in supporting individuals with a disability. However, confidence in this causal
connection is limited because of the relatively weak study designs that were used. This
undermines our understanding of the impacts of AT use on users’ informal caregivers.
Keywords
Self-help devices; Caregivers; Outcomes assessment; Review
Each year in the United States, over 50 million individuals act as informal caregivers.1
Informal caregivers are definable as being individuals who provide unpaid assistance to
recipients who are ill or disabled, exclusive of volunteers from care provision
organizations.2 Informal caregivers provide assistance with basic and instrumental activities
of daily living and emotional support.2 In attempting to maintain the quality of life of those
they help, informal caregivers may experience a great deal of distress, which can include
feelings of depression, isolation, anxiety and burnout (i.e. physical, mental, or emotional
exhaustion).3,4 These potential problems pose a challenge to health care systems, as
informal caregivers provide four times as much assistance as formal caregivers.5 The
replacement value of informal caregiver’s unpaid contributions has been estimated at $350
billion annually in the United States.1
Many older adults rely on assistive technology (AT), defined as, “any item, piece of
equipment, or product system, whether acquired commercially or off the shelf, modified, or
customized, that is used to increase, maintain, or improve the functional capabilities of
individuals with disabilities.”6 In the United States, estimated rates of AT use for individuals
age 65 years and over range from 14%–18%,7 and AT usage grows as age increases. Canes,
walkers, wheelchairs, grab bars and bath seats are some of the most commonly used devices
in later life.7–11
A primary justification for providing AT to older adults is that it reduces their dependence
on human assistance. However, notwithstanding the use of AT, daily activities and social
participation are likely to remain restricted to some extent, especially for persons with
moderate and severe levels of impairment.12 Consequently, it is not surprising that a
combination of AT and human assistance is used by some older people to enhance their
daily activities and social participation.13–15
Ben Mortenson et al. Page 2
Am J Phys Med Rehabil. Author manuscript.
NIH-PA Author Manuscript NIH-PA Author Manuscript NIH-PA Author Manuscript
Demers et al.16 developed a framework for understanding outcomes experienced by
caregivers who assist AT users. According to this framework, AT and other contextual
factors moderate the relationship between caregiving-related stressors (primary and
secondary) and caregiver outcomes. Primary stressors are distinguished in terms of areas and
forms of assistance, i.e., the nature, number, safety, and security of tasks, and the time and
physical effort/work they require. Secondary caregiving-related stressors include role
overload, effective use of time, and home modifications. Caregiver outcomes are comprised
of quality of life, physical and psychological health, and social participation.
Systematic reviews of research published prior to 2000 found only limited information about
the impact of AT on caregivers. A review of care delivery approaches to promote seniors’
independence reported that little research evidence exists to support or refute the claim that
AT use decreases dependence on caregivers or that it reduces caregivers’ sense of burden.17
Similarly, a review of the impact of wheeled mobility on adult users and their caregivers
found few studies that had looked at outcomes relevant to caregivers.18
Given 1) the prevalence and importance of informal caregivers, 2) the number of older
adults with disabilities, and 3) potential problems associated with caregiver burnout, we
sought to identify research evidence that examined the impact of AT used by care-recipients
on their informal caregivers. Specifically we wanted to 1) evaluate evidence for the
effectiveness of care recipient’s AT use on caregiver outcomes, 2) identify methodological
limitations that constrain the quality of the evidence they provide, 3) describe the outcome
domains that were focused on in the relevant studies, and 4) suggest remedies needed in
future research.
Methods
We addressed the study objectives by conducting a systematic review of research in this
area.
Inclusion Criteria
The review focused on the population of informal caregivers of adults with physical and/or
cognitive disabilities. We focused on adults because another review recently examined the
impact of AT on children’s caregivers.19 Informal caregivers were considered to be
individuals who provide unpaid assistance to recipients who are ill or disabled. The informal
caregivers studied encompassed individuals who did or did not cohabitate with the person
receiving assistance, and thus included friends, family members, acquaintances, and
neighbors. The interventions that were examined comprised AT intended to enhance user
self-care, mobility, or memory; device training; and environmental modifications.20 Because
we were interested in the broad impact of these interventions, both objectively and
subjectively assessed outcomes were covered.20 Given that we wanted to be able to evaluate
the quality of the original research and we were concerned with real rather than hypothetical
outcomes, included studies had to present original data describing outcomes of using the AT
being investigated.
Ben Mortenson et al. Page 3
Am J Phys Med Rehabil. Author manuscript.
NIH-PA Author Manuscript NIH-PA Author Manuscript NIH-PA Author Manuscript
Exclusion Criteria
Studies were excluded for three reasons. 1) They did not include AT as the main component
of the intervention, as this would represent substantial co-intervention. 2) They pooled data
from both users and non-users of AT (e.g., individuals with multiple sclerosis, only some of
whom used AT), making it impossible to isolate the impact of AT on caregivers. 3) They
were published before 1990.
Search Strategy
We searched Embase, Medline (combined and in progress citations), PsychINFO, and the
Cumulative Index to Nursing and Allied Health Literature. We targeted articles that had
been published from 1990 until August 2011, as the first formal and legal definition of AT
was first published in 1988.6 We used a variety of database specific medical subject
headings and keywords. Among those terms were self-help device, AT, mobility aid,
disability aid, wheelchair, communication AT for the disabled, caregiver, informal care,
informal hours of care, family, spouses, significant other, caregiver burden, and caregiver
support. Systematic reviews were examined to identify relevant original research.
After deleting duplicates, the first author reviewed the titles of all citations and the abstracts
of potentially eligible studies. We obtained the full articles for abstracts that appeared to
meet the inclusion and exclusion criteria. The first and second authors independently
reviewed the articles and discussed any disagreement until reaching consensus. We
reviewed the reference lists of included studies to identify additional candidate studies, and
used Web of Science to identify papers that cited the included studies. Finally, we contacted
authors who had recently published in this area to identify any unpublished studies of
relevance, examined systematic reviews to identify relevant original research, and reviewed
abstracts revealed by the electronic searches of databases.
Evaluation of Evidence for the Effectiveness of Care Recipients’ AT Use on Caregiver
Outcomes
We used a study-specific protocol to abstract information from each included study. It was
adapted from one used by the World Health Organization,21 and is available from the first
author upon request. Based on pilot testing, we added specific items to facilitate the
inclusion of qualitative studies. This form included information about the study design,
sampling methods, theoretical perspective, hypotheses, participants (i.e., age, sex,
diagnosis), intervention provided (i.e., AT used, environmental modification made, or
training given), outcome measures (reliability, validity, quality control, missing data),
results, and summary of potential biases (i.e., selection biases, measurement biases, and
intervention biases such as co-intervention and contamination).
Quantitative studies were assigned a level of evidence based on criteria recommended by the
Centre for Evidence Based Medicine (1a=systematic reviews of randomized control trials
(RCTs), 1b=individual RCTs, 2a=systematic reviews of cohort studies, 2b=individual cohort
studies, 3a=systematic reviews of case control studies, 3b=individual case control studies,
4=case-series studies, and 5=expert opinion).22 Cross-sectional surveys were assigned a
value of “4” for the purposes of the review.
Ben Mortenson et al. Page 4
Am J Phys Med Rehabil. Author manuscript.
NIH-PA Author Manuscript NIH-PA Author Manuscript NIH-PA Author Manuscript
Qualitative studies were assigned a level of evidence based on Kearney’s criteria.23 To be
consistent with the Centre for Evidence Based Medicine levels, we reverse scored Kearney’s
levels as follows: I=dense explanatory description, II=depiction of experiential variation,
III=shared pathway or meaning, IV=descriptive categories, V=findings restricted by a priori
frameworks. We evaluated the quantitative and qualitative aspects of mixed-methods studies
separately using the previously described approaches. Final quality scores and levels of
evidence were arrived at consensually. A narrative synthesis of each included study was
formulated and the studies were categorized in terms of design, level of evidence,
population, type of ATs, and AT outcomes identified.
Methodological Limitations of Included Studies
To identify methodological limitations, the first author and a trained master’s-level research
assistant critically appraised all studies. The methods of quantitative studies were evaluated
using Downs and Black’s review criteria24 because they are not restricted to evaluating
randomized or quasi-experimental studies. The criteria are represented by 26 dichotomous
and one six-point rating scales (for sample size) that assess how findings are reported, as
well as issues of internal and external validity and power. Consistent with the practice of
Strong et al.,25 we scored all items dichotomously, and particular scoring ranges were
assigned the quality designations of excellent (26–27), good (20–25), fair (15–19), and poor
(0–14).
Qualitative studies were reviewed using the Critical Appraisal Skills Program (CASP)
qualitative evaluation form26 The CASP was selected because it is a generic appraisal tool
that is not specific to any particular type of qualitative methodology. The CASP includes 10
dichotomous questions, each having 1–7 sub-questions that assess research design,
recruitment, methods, reflexivity, analysis, and findings. Main questions were scored
positively if the majority of sub-questions were answered affirmatively. Specific ranges of
CASP score were assigned to corresponding levels of quality: excellent (9–10), good (6–8),
fair (3–5), and poor (1–2).
We recorded the potential biases of each study on the data abstraction form, and also
documented methodological gaps in how well the AT was described (in terms of training
provided and fit with the user’s environment), how informal caregivers were defined, and
whether the research was based on a conceptual model or research hypothesis.
Outcome Domains
To categorize the outcomes of AT provision on caregivers, we mapped the studies’ findings
in terms of the stressors and outcomes identified in the Demers and colleagues’ conceptual
framework for understanding outcomes experienced by caregivers who assist AT users.16
Results
Our search strategy identified 1124 candidate articles with duplicates removed; 1056 were
excluded following review of the abstracts or titles. Of the remaining 68 articles, 46 were
excluded following review of the article, leaving 22 studies that met the inclusion and
exclusion criteria. The authors who we contacted reported no unpublished studies, and no
Ben Mortenson et al. Page 5
Am J Phys Med Rehabil. Author manuscript.
NIH-PA Author Manuscript NIH-PA Author Manuscript NIH-PA Author Manuscript
relevant conference abstracts were identified. Among the 46 excluded studies, 31 did not
describe impacts on informal caregivers, five did not distinguish between formal and
informal caregivers, five did not provide an intervention that was AT-focused, and five were
review articles. The included studies11, 13, 16, 27–45 are described in Table 1 in terms of their
study design, theoretical basis, AT user and caregiver demographics, caregiver definition,
type of AT, and the informant who provided judgments from which the outcomes were
derived (user only, caregiver only, user and caregiver, or researcher).
Methods Used in Included Studies
Methodologically, 7 studies were qualitative, 13 were quantitative, and 2 used mixed-
methods. Among the qualitative studies, one used focus groups and six used qualitative
interviews, including one with participant observations. Four of the eight quantitative studies
using survey data11, 13, 27, 28 were based on representative, population-based data from
phase 2 of the United States Adult Disability Follow-back Survey (1994–5).46 Two were
case studies and three were intervention studies without a control group that recorded both
the pre- and post-intervention status of the participants. Both mixed-methods studies
consisted of an intervention supplemented by interviews. Fifteen of the 22 studies that met
the inclusion/exclusion criteria were published after 2000. All were conducted in North
America or Europe.
Research Participants
The studies incorporated a variety of AT users and informal caregivers (defined and
described in different ways) and had a wide range of sample sizes. Five were limited to
individuals with cognitive impairments. The remainder included users with a variety of
diagnoses and physical functioning problems. Five did not provide demographic information
about caregivers. Most caregivers in the remaining studies were older than age 60 years.
Eight studies included only relatives of the AT users. Two of these only dealt with spouses,
and one included individuals who self-defined themselves as being caregivers, but the term’s
operational definition was not specified. Excluding four studies based on national survey
data, most had sample sizes less than 50 participants. None explored differences in outcomes
between male and female caregivers.
Evidence for the Effectiveness of AT in Relation to Caregiver Outcomes
As noted in Tables 2 & 3, most studies provided a relatively low level of evidence. At the
same time, the qualitative studies were of relatively better quality than the quantitative ones.
All quantitative studies provided level 4 evidence. The evidence of one qualitative study was
rated as being grade V, two as being grade IV, and four as being grade III. The two mixed-
methods studies had level 4 quantitative evidence and grade V qualitative evidence.
Impact of Assistive Technology by Device Type
Eight studies focused on the impact of mobility AT. Four studies concerned with power
mobility devices reported that they reduced 1) the perceived need for caregiver supervision
of user mobility, 2) assistance with transfers, and 3) the need to push users
outside.16, 30, 34, 35 Effects on the amount of informal care provided depended on the type of
Ben Mortenson et al. Page 6
Am J Phys Med Rehabil. Author manuscript.
NIH-PA Author Manuscript NIH-PA Author Manuscript NIH-PA Author Manuscript
device being considered. Allen et al. found that the use of canes or crutches decreased hours
of informal care, and the use of wheelchairs increased hours of informal care.28 Home
modifications to improve wheelchair accessibility were associated with decreased hours of
informal care.27 Negative outcomes of wheelchair use included caregiver injury,38 anxiety
about AT-user injury,15, 30, 35, 41 wheelchair accessibility issues, and social stigma.16, 35, 41
Six studies examined how the use of medic-alert (communication AT designed to summon
help when users are unable to get to the telephone, combined with a reminder system) and
AT for cognitive problems affected caregivers. Two related studies of a medic-alert device
found it increased caregivers’ sense of security and decreased their sense of burden.36, 44
Four studies looked exclusively at AT for individuals with cognitive impairment. The AT
that was investigated included a day/night clock,29,33,43 lost item locator, 33 automatic
nightlight, 33 gas cooker device, 33 and a picture button telephone. 33 The findings indicated
that although some caregivers reported the AT was useful, others were frustrated because of
the verbal cuing that care-recipients required in order to operate them.29, 33, 43 A study of a
stove timer found the device decreased caregiver anxiety, but caused frustration when the
device turned off the stove while caregivers were cooking.42
Eight studies looked at the outcomes of providing individual users with a variety of ATs.
Caregivers in four studies reported that AT made it easier for them to provide
assistance.32, 37, 39, 45 Two studies found that use of at least some of the AT resulted in
needing to provide fewer hours of care.11, 13 Two studies identified negative outcomes
including caregiver injury31 and concerns about how AT initially altered caregivers’ homes
and interpersonal relationships.40
Methodological Limitations
As noted in Table 2, the quantitative/mixed-methods studies had a range of 5 to 11 and a
mean of 8.6 out of 27 on the Downs and Black criteria.24 No studies adequately described
the interventions provided or the degree of adherence to those interventions. As none of the
studies used blinding or randomization. All of these studies were therefore considered to be
of poor quality. As noted in Table 3, the qualitative/mixed-methods studies had a range of 5
to 9 and a mean of 7.2 out of 10 according to the CASP evaluation system. Most of these
studies were judged to be of good quality. All of the studies adequately identified their study
questions, justified their choice of methods and presented their findings but no study
sufficiently described the relationship between the researcher and his or her participants.
The 22 studies had a variety of methodological deficiencies. Only three16,36,40 were based
on a conceptual model or theory, just three others specified a priori hypotheses 27,28,43 that
were based on extrapolations from previous findings, while one study included both.11.
Seven of the 15 quantitative/mixed methods studies used outcome measures that had been
psychometrically evaluated.32,37–39,43–45 Sixteen of the 22 studies supplied only scant
information about the AT provided, how appropriately their capabilities met users’ needs (in
terms of their capabilities and environment), and about any training that was provided. None
of the intervention studies described the characteristics of participants lost to follow-up.
Fourteen studies 13,16,29–32,36,38–40,42,44–45 did not explicitly define the caregivers they
included and eight 11,13,27–28,32, 34–35,38 relied on care recipients’ perceptions in order to
Ben Mortenson et al. Page 7
Am J Phys Med Rehabil. Author manuscript.
NIH-PA Author Manuscript NIH-PA Author Manuscript NIH-PA Author Manuscript
establish caregivers’ outcomes. None documented the usage frequency of the AT being
studied in any manner. None of the intervention studies reported data about possible co-
interventions. None of the studies described how their findings may have been affected by
seasonal influences. None performed an economic analysis examining the cost-benefit of
various forms of AT on users’ caregivers.
Outcome Domains
The content of the 22 studies is mapped in Table 4 according to the outcomes of AT
provision and the stressors that are involved as depicted in the conceptual framework of
Demers et al.16 Hours of care provision was the most frequently documented caregiver
outcomes. We identified eight outcomes related to primary stressors, two related to
secondary stressors, and four related to general outcomes (three pertaining to psychological
health and one to participation). Two outcomes that were not included in the framework
were identified: vigilance concerning the recipient’s well-being, and concern about stigma
associated with using a device. Most studies reported beneficial outcomes of AT use for
caregivers in terms of decreased primary stressors. Some negative outcomes included
caregiver injury, caregiver worry about user injury, frustration with having to cue the user,
and stigma and accessibility issues that jointly affect users and their caregivers.
Discussion
To our knowledge this is the first systematic review to explore the impact of AT on user’s
informal caregivers specifically.
Evidence of the Effectiveness of AT in Relation to Caregiver Outcomes
None of the 22 reviewed studies supplied more than a low level of evidence regarding the
impact of AT on users’ informal caregivers. Quantitative studies were primarily descriptive
in nature and the four intervention studies33,39,44,45 used a pre-post design without a control
group. The highest-level qualitative studies30, 40–42 described shared pathways or meaning
among participants, but none offered extensive description of experiential variation among
participants or provided dense explanatory description.
Overall, there seems be a trend towards positive outcomes for caregivers. This might reflect
a publication bias, as studies with positive findings are more likely to be published;47
however, we were unable to identify any unpublished reports (containing either positive or
negative findings) by contacting researchers who had published in this area, so publication
bias seems an unlikely explanation for this trend. ATs, like most innovations, are intended to
create favorable outcomes; however, negative, unintended consequences may also
occur.48, 49 Negative outcomes, including caregiver frustration, worry, and injury, were
more often identified in caregiver-directed surveys and in exploratory investigations using
qualitative/mixed methods designs. Although not discounting caregiver injury as being a
seriously negative outcome, it should be noted that similar injuries may occur in the absence
of device use. Outcomes such as frustration and worry might not seem severe, but they may
contribute to caregiver distress and ultimately lead to burnout.3,4
Ben Mortenson et al. Page 8
Am J Phys Med Rehabil. Author manuscript.
NIH-PA Author Manuscript NIH-PA Author Manuscript NIH-PA Author Manuscript
Impact of Assistive Technology by Device Type
The studies included in this review evaluated a variety of AT. A substantial proportion
focused on individuals who used several different types of AT, making it difficult to
determine the impact of any one of them. At the same time, such studies have ecological
validity because many individuals living in the community use multiple ATs.50, 51
There may be issues with the increased need for assistance that stem from the use of more
complex AT that include moving parts.11, 31, 39 In this regard, wheelchairs appeared to be
especially likely to produce mixed benefits for caregivers, as they facilitated transportation
on one hand, but were associated with increased hours of care and injuries on the other
hand.35 That may be attributable to the size and visibility of this AT, to difficulties
transporting them, and to environmental accessibility issues associated with their use.52–54
Other types of AT appeared to yield generally positive outcomes, although caregiver
complaints were noted about the need to provide verbal cueing when cognitive AT was
used.32, 43
Methodological Limitations of Included Studies
Many of the survey studies necessarily received low ratings because of their failure to
control for extraneous variables. Most of the intervention studies received low ratings
because they did not employ a comparison group and had very small sample sizes. None
measured the frequency with which AT were used or accounted for opportunities for their
appropriate use. In contrast, the qualitative studies had generally higher ratings than the
quantitative studies; however, this likely reflects the fact that different rating systems were
used to evaluate the two types of studies. Given that no qualitative studies adequately
described the relationship between participants and researchers, this does call into question
the authenticity of their findings, that is, the degree to which they fairly and accurately
described participants’ experiences.55
Published research in this area exhibits a number of deficiencies. Principal among them is
inadequately describing the characteristics of interventions. These include the types of AT
provided, their appropriateness for meeting the user’s and caregiver’s needs (in terms of
abilities and environmental fit), the extent to which both parties were involved in device
selection, the training that both received in the AT’s use, and measurements of that usage.
That information is needed both for interpreting the findings of AT outcomes studies and for
replicating them.56 Most of these studies offered little treatment theory to explain the
causally active ingredients of the interventions provided, also making it difficult to interpret
their findings.56
There are several areas that require additional documentation to develop a better
understanding of the effect on AT on user’s caregivers. Co-intervention is a serious
confounding influence that needs to be documented to help attribute caregiver outcomes to
the devices provided. Relatively few studies examined the relationship among AT use and
informal and formal caregiving (formal caregiving might be expected to substitute for some
informal caregiving). Pharmaceutical interventions and rehabilitation programs might also
affect AT use and informal caregiving. Seasonal variation is another potential confounding
Ben Mortenson et al. Page 9
Am J Phys Med Rehabil. Author manuscript.
NIH-PA Author Manuscript NIH-PA Author Manuscript NIH-PA Author Manuscript
variable because some AT such as mobility AT may be used differently in summer than in
winter. Finally, without documenting the characteristics of those lost to follow up it raises
that possibility that those who participated are different from those who did not.
Many studies’ findings about caregiver outcomes were based on the reports and judgments
of care recipients and not those of the caregivers themselves. Proxy measurements of
subjective caregiver-related outcomes are likely to be of questionable accuracy. Caregiver
and AT user reports of more objective constructs such as the frequency of care provision
may also be discrepant. Furthermore, few studies examined the outcomes of AT provision
separately and concurrently for users and their informal caregivers. Consequently, the
impacts of AT use on individuals in these two roles cannot be compared. This is important,
because some AT may benefit caregivers and assistance users alike, while other AT may
benefit caregivers and assistance users differentially. Like much research on factors
influencing either caregiver outcomes57 or AT outcomes,56 most of the studies that were
reviewed were atheoretical and not hypothesis driven, making it difficult to advance
research in this area. Furthermore, the failure of many studies to provide an explicit
definition of informal caregivers makes comparisons across studies problematic. For
example, studies that include both co-resident and extra-resident caregivers versus co-
resident caregivers alone may yield different outcomes because of different demands
associated with the two roles.58
Outcome Domains
From the standpoint of the framework by Demers et al.,16 the preponderance of studies
focused on the effects of AT use on the primary stressors experienced by caregivers. The
most frequently measured stressor was hours of care. Fewer studies examined the impact of
AT use on secondary stressors such as role overload and elective use of time. Outcomes
involving psychological health were studied while effects on physical health and quality of
life were generally neglected. It is important to document the impact of AT on stressors as
well as outcomes, so that the effects of AT provision can be fully understood.
Research Gaps
There are many gaps in this research area, one regarding the populations studied. Most of
the available research has focused on caregivers of older adult AT users. The caregivers of
users in younger age groups well may experience different outcomes. Furthermore, despite
the prevalence of disability in non-Western countries and projections of a dramatic increase
in its prevalence,59 the impact of AT on informal caregivers in these areas is unknown. It
has been argued that the gendered nature of caregiving, wherein women provide the
majority of care, contributes to different outcomes being experienced by male and female
caregivers.2 However, none of the studies examined that possibility.
Research is also limited in terms of the AT that have been evaluated and economic
evaluations of their effectiveness. Although it is infeasible to study impacts of the over
40,000 specific products that are available,60 more research is needed of caregiver outcomes
associated with the use of particular, broadly defined categories of devices such as AT for
daily living, mobility AT, and environmental adaptations. This is important because
Ben Mortenson et al. Page 10
Am J Phys Med Rehabil. Author manuscript.
NIH-PA Author Manuscript NIH-PA Author Manuscript NIH-PA Author Manuscript
different categories of devices may produce different outcomes. This is suggested, for
example, by the findings that compared the impact of wheelchairs versus ambulation aids on
hours of caregiving. Furthermore, without examining the cost-benefit of various forms of
AT interventions on user’s caregivers, an understanding of the overall utility of these
devices cannot be determined.
Future Research
To date, most research in this area has used exploratory designs, a strategy that is
appropriate in view of the current level of knowledge. The majority of quantitative studies
used cross-sectional survey methods. Additional hypothesis-driven exploratory research is
needed to identify active ingredients that appear to contribute to caregiver outcomes.
Promising candidates will then need to be confirmed by well-controlled experimental
studies, RCTs foremost among them.61 Qualitative methods can be embedded in those
studies to examine how interventions were implemented and perceived62, 63 and to provide
multiple perspectives on observed outcomes so they can be understood more
completely.64, 65
National population surveys (cf., 11, 13, 27, 28) offer the possibility of having demographically
representative findings. However, the available survey-based studies have inferred the
impact of AT use on caregivers from users’ responses to very few queries, principally
dealing with the number of hours of assistance they received. Outcomes have been neglected
that are likely to be important to caregivers, e.g., the amount of physical demands on them,
injury risk, psychological stress, and some of the positive aspects of caregiving that have
been documented including companionship and satisfaction with providing help.66 Future
population-based surveys that encompass the perspective of both AT users and their
informal caregivers and that contain more detailed queries about caregiver demands will be
especially valuable.
Limitations
Four limitations of this review should be noted. First, the inclusion of additional grey
literature such as conference abstracts and technical reports that were not indexed
electronically might have identified additional relevant research. Second, our search did not
identify any relevant studies prior to 1994. This may reflect the decreased electronic
coverage of older publications and inconsistent use of the term assistive technology, which
was only formalized in 1988.6 Third, the quality of evidence of quantitatively designed
studies could only be compared indirectly with that of qualitatively designed ones because
different systems were used for those appraisals. Finally, although the CASP and Downs and
Fawcett appraisal systems are a useful way to make comparisons across studies, caution
needs to be used in interpreting the total scores, as this assumes that each item is equally
important, For this reason, we have provided the scores for each item for all of the included
studies.
Recommendations
Given the importance of informal caregivers on those they care for, their integral role within
the healthcare system, and the need to facilitate their continued provision of informal care,
Ben Mortenson et al. Page 11
Am J Phys Med Rehabil. Author manuscript.
NIH-PA Author Manuscript NIH-PA Author Manuscript NIH-PA Author Manuscript
our review results in 12 recommendations for future research regarding caregiver outcomes
attributable to AT use.
1. Like studies 11,16, 26–28,40, 43 the research should be informed theoretically so that
models and theories can advance as empirical knowledge grows.67
2. Like studies 11,27–28,37,41,43, reports should clearly indicate how the role of
caregiver was operationally defined.
3. Unlike all of the intervention studies included in the review, study reports should
supply a) information about the bases for device recommendations (if any were
made), b) unequivocal designations of the AT that were used, c) descriptions of any
device training that was provided, and d) documentation about co-interventions
(formal caregiving, pharmaceutical interventions, rehabilitation services).55
4. Unlike all of the studies included in the review, AT use should be measured in
terms of where, when, how, and how often AT was used, and whether or not they
were used in conjunction with caregiver assistance.
5. Like studies 30,36,41 AT intervention outcomes should be assessed
multidimensionally, including those accruing to AT users as distinct from those
accruing to their caregivers.15
6. Like studies 35,44 diverse subjective aspects of caregiving should be measured, such
as fatigue, burden, and personal satisfaction.15
7. Like studies 16,30,33,36–37,39–44 data pertaining to subjective caregiver outcomes
should be elicited from caregivers themselves, rather than from AT users.
8. Like studies,32,37,39,40,45 exploratory research should be expanded to provide a
better understanding of how different types of ATs impact on users and their
informal caregivers.
9. Unlike the studies in the review, longitudinal studies should be conducted to foster
knowledge about how caregiver outcomes vary over time.
10. More robust experimental designs should be employed for confirming putative
causal linkages between aspects of AT use and caregiver outcomes.
11. Unlike the studies in the review, the effects of individual differences among
caregivers should be investigated, including their sex, age, ethnicity, and health
status.
12. Unlike the studies in the review, future research should look at a diversity of AT
interventions in respect to a variety of user populations, and some of those studies
should include benefit-cost analyses to determine the relative value of various
caregiver outcomes.67
Conclusion
This systematic review of the outcomes of AT for users’ informal caregivers identified 22
relevant studies. Despite the health effects of care provision on informal caregivers and their
Ben Mortenson et al. Page 12
Am J Phys Med Rehabil. Author manuscript.
NIH-PA Author Manuscript NIH-PA Author Manuscript NIH-PA Author Manuscript
economic impact, the evidence provided by these studies is limited because of the relatively
weak study designs that were used and methodological limitations. Further research is
necessary to explore how AT use affects informal caregivers, and to make stronger
inferences about the determinants that are involved. This research needs to include a greater
variety of AT users, informal caregivers, and AT. These studies will highlight ways that AT
interventions can be improved so that they are associated with beneficial outcomes for both
users and their informal caregivers.
Acknowledgments
Personal funding was provided for Dr. Mortenson by a Post-Doctoral Fellowship in Mobility and Aging from the
Canadian Institutes of Health Research.
References
1. Houser A, Gibson MJ. Valuing the invaluable: The economic value of family caregiving, 2008
update. Insight Issues. 2008; 13:1–8.
2. Walker AJ, Pratt CC, Eddy L. Informal caregiving to aging family members: A critical review.
Family Relations. 1995; 44:402–411.
3. Cuellar N, Butts JB. Caregiver distress: What nurses in rural settings can do to help. Nurs F. 1999;
34:24–30.
4. Egbert N, Dellmann-Jenkins M, Smith GC, Coeling H, Johnson RJ. The emotional needs of care
recipients and the psychological well-being of informal caregivers: Implications for home care
clinicians. Home Healthc Nurse. 2008; 26:50–57. [PubMed: 18158495]
5. Agree EM, Freedman VA, Sengupta M. Factors influencing the use of mobility technology in
community-based long-term care. J Aging Health. 2004; 16:267–307. [PubMed: 15030666]
6. United States Technology-related Assistance for Individuals with Disabilities Act of 1988, Section
3.1. Public Law 100–407, August 9, 1988.
7. Cornman JC, Freedman VA, Agree EM. Measurement of assistive device use: Implications for
estimates of device use and disability in late life. Gerontologist. 2005; 45:347. [PubMed: 15933275]
8. Clarke P, Colantonio A. Wheelchair use among community-dwelling older adults: Prevalence and
risk factors in a national sample. Can J Aging. 2005; 24:191–198. [PubMed: 16082621]
9. Kaye, HS.; Kang, T.; LaPlante, MP. Mobility device use in the United States. Washington, DC: US
Department of Education, National Institute on Disability and Rehabilitation Research; 2000.
10. Häggblom-Kronlöf G, Sonn U. Use of assistive devices-a reality full of contradictions in elderly
persons’ everyday life. Disabil Rehabil: Assist Technol. 2007; 2:335–345.
11. Agree EM, Freedman VA. Incorporating assistive devices into community-based long-term care:
An analysis of the potential for substitution and supplementation. J Aging Health. 2000; 12:426–
450. [PubMed: 11067703]
12. Agree EM, Freedman VA. A comparison of assistive technology and personal care in alleviating
disability and unmet need. Gerontologist. 2003; 43:335–344. [PubMed: 12810897]
13. Agree EM, Freedman VA, Cornman JC, Wolf DA, Marcotte JE. Reconsidering substitution in
long-term care: When does assistive technology take the place of personal care? J Gerontol B
Psycho Sci Soc Sci. 2005; 60:S272–S280.
14. Allen SM, Foster A, Berg K. Receiving help at home: The interplay of human and technological
assistance. J Gerontol B Psycho Sci Soc Sci. 2001; 56:S374–S382.
15. Taylor DH, Hoenig H. The effect of equipment usage and residual task difficulty on use of
personal assistance, days in bed, and nursing home placement. J Am Geriatr Soc. 2004; 52:72–79.
[PubMed: 14687318]
16. Demers L, Fuhrer MJ, Jutai J, Lenker J, Depa M, De Ruyter F. A conceptual framework of
outcomes for caregivers of assistive technology users. Am J Phys Med Rehabil. 2009; 88:645–655.
[PubMed: 19620830]
Ben Mortenson et al. Page 13
Am J Phys Med Rehabil. Author manuscript.
NIH-PA Author Manuscript NIH-PA Author Manuscript NIH-PA Author Manuscript
17. McWilliam CL, Diehl-Jones WL, Jutai J, Tadrissi S. Care delivery approaches and seniors’
independence. Can J Aging. 2000; 19:101–124.
18. Reid D, Laliberte-Rudman D, Hebert D. Impact of wheeled seated mobility devices on adult users’
and their caregivers’ occupational performance: A critical literature review. Can J Occup Ther.
2002; 69:261–280. [PubMed: 12501452]
19. Henderson S, Skelton H, Rosenbaum P. Assistive devices for children with functional
impairments: Impact on child and caregiver function. Develop Med Child Neurol. 2008; 50:89–98.
[PubMed: 18177410]
20. Gitlin, LN. Assistve technology in the home and community for older people: Psychological and
social considerations. In: Scherer, MJ., editor. Assistive Technology: Matching Device and
Consumer for Successful Rehabilitation. American Psychological Association; 2002. p. 109-122.
21. World Health Organization. [Accessed 08/19/2011] Draft guidelines for WHO and SAGE
development of evidenced-based vaccine related recommendations. Available at http://
www.who.int/immunization/sage/
1_Draft_Guidelines_Evidence_Review_GRADING_apr_2011.pdf
22. Centre for Evidence Based Medicine. [Accessed 11/25, 2010] Oxford centre for evidence-based
medicine levels of evidence. Available at: http://www.cebm.net/index.aspx?o=1025
23. Kearney MH. Levels and applications of qualitative research evidence. Res Nurs Health. 2001;
24:145–153. [PubMed: 11353462]
24. Downs SH, Black N. The feasibility of creating a checklist for the assessment of the
methodological quality both of randomized and non-randomized studies of health care
interventions. J Epidemiol Community Health. 1998; 52:377–384. [PubMed: 9764259]
25. Strong JG, Jutai JW, Russell-Minda E, Evans M. Driving and low vision: An evidence-based
review of rehabilitation. J Visual Impair Blind. 2008; 102:210–222.
26. Critical Appraisal Skills Program Birmingham. [Accessed 11/25, 2010] Birmingham critical
appraisal skills program. Available at: http://www.casp-birmingham.org/
27. Allen S, Resnik L, Roy J. Promoting independence for wheelchair users: The role of home
accommodations. Gerontologist. 2006; 46:115–123. [PubMed: 16452291]
28. Allen SM, Foster A, Berg K. Receiving help at home: The interplay of human and technological
assistance. J Gerontol Psycho Sci Soc. 2001; 56:S374–S382.
29. Baruch J, Downs M, Baldwin C, Bruce E. Innovative practice. A case study in the use of
technology to reassure and support a person with dementia. Dementia. 2004; 3:372–377.
30. Boss TM, Finlayson M. Responses to the acquisition and use of power mobility by individuals who
have multiple sclerosis and their families. AM J Occup Ther. 2006; 60:348–58. [PubMed:
16776403]
31. Brown AR, Mulley GP. Do it yourself: Home-made aids for disabled elderly people. Disabil
Rehabil. 1997; 19:35–37. [PubMed: 9021283]
32. Chen T, Mann WC, Tomita M, Nochajski S. Caregiver involvement in the use of assistive devices
by frail older persons. Occup Ther J Res. 2000; 20:179–199.
33. Cahill S, Begley E, Faulkner JP, Hagen I. “It gives me a sense of independence” - findings from
Ireland on the use and usefulness of assistive technology for people with dementia. Technol
Disabil. 2007; 19:133–142.
34. Frank AO, Ward J, Orwell NJ, McCullagh C, Belcher M. Introduction of a new NHS electric-
powered indoor/outdoor chair (EPIOC) service: Benefits, risks and implications for prescribers.
Clin Rehabil. 2000; 14:665–673. [PubMed: 11128743]
35. Frank A, Neophytou C, Frank J, De Souza L. Electric-powered-indoor/outdoor wheelchairs
(EPIOCS): Users’ views of influence on family, friends, and carers. Disabil Rehabil: Assist
Technol. 2010; 5:327–38.
36. Garceau M, Vincent C, Robichaud L. Note de Recherche: La télésurveillance comme outil
favorisant la participation sociale des personnes âgées à domicile. [The tele-surveillance as a tool
to favour social participation of elderly at home]. Can J Aging. 2007; 26:59–72. [PubMed:
17430805]
37. Kane CM, Mann WC, Tomita M, Nochajski S. Reasons for device use among caregivers of the
frail elderly. Phys Occup Ther Geriatr. 2001; 20:29–47.
Ben Mortenson et al. Page 14
Am J Phys Med Rehabil. Author manuscript.
NIH-PA Author Manuscript NIH-PA Author Manuscript NIH-PA Author Manuscript
38. Kirby RL, Ackroyd-Stolarz SA, Brown MG, Kirkland SA, MacLeod DA. Wheelchair-related
accidents caused by tips and falls among noninstitutionalized users of manually propelled
wheelchairs in Nova Scotia. Am J Phys Med Rehabil. 1994; 73:319–330. [PubMed: 7917161]
39. Nochajski SM, Tomita MR, Mann WC. The use and satisfaction with assistive devices by older
persons with cognitive impairments: A pilot intervention study. Top Geriatr Rehabil. 1996; 12:40–
53.
40. Pettersson I, Berndtsson I, Appelros P, Ahlström G. Lifeworld perspectives on assistive devices:
Lived experiences of spouses of persons with stroke. Scand J Occup Ther. 2005; 12:159–169.
[PubMed: 16457089]
41. Rudman DL, Hebert D, Reid D. Living in a restricted occupational world: The occupational
experiences of stroke survivors who are wheelchair users and their caregivers. Can J Occup Ther.
2006; 73:141–152. [PubMed: 16871856]
42. Starkhammar S, Nygård L. Using a timer device for the stove: Experiences of older adults with
memory impairment or dementia and their families. Technol Disabil. 2008; 20:179–191.
43. Topo P, Saarikalle K, Begley E, Cahillb S, Holthe T, Macijauskiene J. “I don’t know about the past
or the future, but today it’s Friday” - evaluation of a time aid for people with dementia. Technol
Disabil. 2007; 19:121–131.
44. Vincent C, Reinharz D, Deaudelin I, Garceau M, Talbot LR. Public telesurveillance service for
frail elderly living at home, outcomes and cost evolution: A quasi experimental design with two
follow-ups. Health Qual Life Outcomes. 2006; 4:41. [PubMed: 16827929]
45. Yang J, Mann WC, Nochajski S, Tomita MR. Use of assistive devices among elders with cognitive
impairment: A follow-up study. Top Geriatr Rehabil. 1997; 13:13–31.
46. Anderson L, Larson S, Lakin C, Kwak N. Health insurance coverage and health care experiences
of persons with disabilities in the NHIS-D. DD Data Brief. 2003; 5:1–20.
47. Easterbrook PJ, Gopalan R, Berlin JA, Matthews DR. Publication bias in clinical research. Lancet.
1991; 337:867–872. [PubMed: 1672966]
48. Rogers, EM. Diffusion of Innovations. New York: The Free Press New York; 1995.
49. Jutai J, Ladak N, Schuller R, Naumann S, Wright V. Outcomes measurement of assistive
technologies: An institutional case study. Assist Technol. 1996; 8:110–120. [PubMed: 10172879]
50. De Craen AJM, Westendorp RGJ, Willems CG, Buskens ICM, Gussekloo J. Assistive devices and
community-based services among 85-year-old community-dwelling elderly in the Netherlands:
Ownership, use, and need for intervention. Disabil Rehabil: Assist Technol. 2009:199–203.
51. Demers L, Fuhrer MJ, Jutai JW, Scherer MJ, Pervieux I, DeRuyter F. Tracking mobility-related
assistive technology in an outcomes study. Assist Technol. 2008; 20:73–83. [PubMed: 18646430]
52. McClain L. A qualitative assessment of wheelchair users’ experience with ADA compliance,
physical barriers, and secondary health conditions. Top Spinal Cord Inj Rehabil. 2000; 6:99–118.
53. Fitzgerald SG, Songer T, Rotko KA, Karg P. Motor vehicle transportation use and related adverse
events among persons who use wheelchairs. Assist Technol. 2007; 19:180–187. [PubMed:
18335707]
54. Hurd WJ, Morrow M, Kaufman KR, An KN. Wheelchair propulsion demands during outdoor
community ambulation. J Electromyography Kinesiol. 2009; 19:942–947.
55. Morrow SL. Quality and trustworthiness in qualitative research in counseling psychology. J Couns
Psychol. 52:250–260.
56. Lenker JA, Fuhrer MJ, Jutai JW, Demers L, Scherer MJ, DeRuyter F. Treatment theory,
intervention specification, and treatment fidelity in assistive technology outcomes research. Assist
Technol. 2010; 22:129–138. [PubMed: 20939422]
57. Greenwood N, Mackenzie A, Cloud GC, Wilson N. Informal carers of stroke survivors–factors
influencing carers: A systematic review of quantitative studies. Disabil Rehabil. 2008; 30:1329–
1349. [PubMed: 19230230]
58. De Koker B. Socio-demographic determinants of informal caregiving: Co-resident versus extra-
resident care. Europe J Aging. 2009; 6:3–15.
59. Harwood RH, Sayer AA, Hirschfeld M. Current and future worldwide prevalence of dependency,
its relationship to total population, and dependency ratios. Bull World Health Organ. 2004;
82:251–258. [PubMed: 15259253]
Ben Mortenson et al. Page 15
Am J Phys Med Rehabil. Author manuscript.
NIH-PA Author Manuscript NIH-PA Author Manuscript NIH-PA Author Manuscript
60. National Institute of Disability Rehabilitation Research. [Accessed 12/01, 2010] Able Data.
Available at: http://www.abledata.com/abledata.cfm?pageid=19327&ksectionid=19327
61. Kazdin, AE. Research Design in Clinical Psychology. 4. Boston, MA: Allyn and Bacon Boston;
2003.
62. Oakley A, Strange V, Bonell C, Allen E, Stephenson J. Process evaluation in randomized
controlled trials of complex interventions. Br Med J. 2006; 332:413.
63. Lewin S, Glenton C, Oxman AD. Use of qualitative methods alongside randomised controlled
trials of complex healthcare interventions: Methodological study. Br Med J. 2009; 339:b3496.
64. Teddlie, C.; Tashakkori, A. Major issues and controversies in the use of mixed methods in the
social sciences. In: Tashakkori, A.; Teddlie, C., editors. Handbook of Mixed Methods in Social
and Behavioral Research. Thousand Oaks, CA: Sage; 2003. p. 3-50.
65. Streubert, HJ.; Carpenter, DR. Triangulation as a qualitative research strategy. In: Streubert
Speziale, HJ.; Carpenter, DR., editors. Qualitative Research in Nursing: Advancing the
Humanistic Imperative. 3. Lippincott; 2003. p. 299-309.
66. Cohen CA, Colantonio A, Vernich L. Positive aspects of caregiving: Rounding out the caregiver
experience. Int J Geriatr Psychiatry. 2002; 17:184–188. [PubMed: 11813283]
67. Fuhrer MJ. Assistive technology outcomes research: Challenges met and yet unmet. Am J Phys
Med Rehabil. 2001; 80:528–535. [PubMed: 11421522]
Ben Mortenson et al. Page 16
Am J Phys Med Rehabil. Author manuscript.
NIH-PA Author Manuscript NIH-PA Author Manuscript NIH-PA Author Manuscript
NIH-PA Author Manuscript NIH-PA Author Manuscript NIH-PA Author Manuscript
Ben Mortenson et al. Page 17
Table 1
Study Design, Theoretical Basis, Participant Demographics, AT Provided, Caregiver Outcomes, Location and
Respondent for Included Studies
Reference
Study
Design/
Theoretical
Basis or
Hypotheses
(Y/N) AT User Demographics Caregiver Demographics/Definition(Y/N) Type of AT Caregiver Outcomes Region Perspective
Mobility AT
Allen et al.
200127 S*/Y N=9,230 reporting
limitations in both
mobility & activities of
daily living, 63% female,
mean age of 62 yr.
NR/Y Wheel-chairs, walkers,
canes, crutches
Use of canes &
crutches, ↓ number of
hours of informal care
& wheelchair use, ↑
hours of informal care
NA A
Allen et al.,
200628
S*/Y N=899 using a wheelchair
in previous two weeks;
62% female, mean age of
67 yr.
NR/Y Home modifications for
wheelchairs
Inverse relationship
noted between number
of home modifications
& hours of unpaid help
NA A
Boss &
Finlayson,
200030
QI/N N=7 individuals with
multiple sclerosis using
powered mobility, 29%
male, mean age of 49 yr.
N=4, spouses, 50% female, mean age of 57
yr./N
Powered mobility ↓ dependence on
caregivers & ↑worries
about safety
NA B
Demers et al.,
200916
QI/ Y NR
Individuals using powered
mobility
N=19, 57% female, mean age of 53 yr., all
relatives/N
Powered mobility ↓ anxiety, ↓ assistance,
↓ physical effort,
↓worries about safety,
↑free time, ↑
participation in personal
& shared activities, & ↑
quality of relationship
with user
NA C
Frank et al.,
200034
S/N N=113 prescribed powered
mobility mean age of 46
yr.
N=94, 51% spouses, 32% parents, & 16%
others, Sex NR/N
Powered mobility 86% felt the chair made
life for caregivers easier
by letting the user go
out alone, ↓ number of
transfers & ↓ need for
pushing
E A
Frank et al.,
201035
QI/N N=64 prescribed powered
mobility, 50% male, mean
age of 46 yr.
N=80, 39% parents, 28% spouses, 15%
siblings, 18% other/N
Powered mobility 44% of users reported
on burden of care
related to device use.
39% reported ↓ physical
burden .44% noted
practical problems for
carers in term of size &
weight of devices,
transportation, & curbs
& slopes. 19% reported
concerns about safety
E A
Kirby et al.,
199438
S/N N=577 community
dwelling wheelchair users,
57% male, mean age of 44
yr.
NR/N Manual wheelchairs One caregiver was
injured.
NA A
Rudman et
al., 200541
QI/N N=16 with stroke, 75%
male, mean age of 76 yr.
N=15, 87% co-resident spouses, 87%
female, mean age of 68 yr./Y
Manual wheelchairs Wheelchair became
incorporated into daily
life. Accessibility &
transportation issues
sometimes restricted
activities &
↓spontaneity
NA B
Medic-Alert or Cognitive AT
Baruch et al.,
200429
CS/N One woman in her 80’s
with balance & memory
problems
Son/N Night-day reminder system Night time phone calls
to son went from 12 to 0
per night
E R
Cahill et al.,
200733
MM
I/N
N=20 with dementia, 35%
male, most between the
ages of 70–80 yr.
N=20, 25% male, most between ages 34–51
& 61–75 yr./N
Five different types of
devices
All caregivers reported
finding the devices
useful. Many had to
prompt the user to use
the device
E C
Garceau et
al., 200736
FG/Y N=4 without cognitive
impairment & with
mobility or cardiovascular
problems, 100% female,
mean age of 77 yr.
N=6, 50% female, 50% daughters, mean age
of 62 yr./N
Medic-alert device ↑ sense of security & ↓
sense of burden reported
NA B
Starkhammar
& Nygård,
200842
QI + O/N N=9 with memory
problems, 33% male,
mean age of 80 yr.
N=5, 40% male, 40% spouses, 60%
daughters/N
Stove timer ↓ worries about safety,
but frustration noted
when the device was
engaged while
caregivers were cooking
E C
Topo et al.,
200743
MM
I/Y
N=50 with dementia, 38%
male, most 80–90 yr. of
age
N=50, 22% male, 49–58 yr. of age/Y most Night & day calendar Caregivers received ↓
questions & phone calls
about time orientation,
E C
Am J Phys Med Rehabil. Author manuscript.
NIH-PA Author Manuscript NIH-PA Author Manuscript NIH-PA Author Manuscript
Ben Mortenson et al. Page 18
Reference
Study
Design/
Theoretical
Basis or
Hypotheses
(Y/N) AT User Demographics Caregiver Demographics/Definition(Y/N) Type of AT Caregiver Outcomes Region Perspective
but some were
frustrated because they
needed to remind the
user to use the device
Vincent et al.,
2006.44
I/N N=38 “frail” older adults,
92% female, mean age of
81 yr.
N=38, 76% children, 71% female/N Medic-alert device Significant
improvements noted in
3 of 5 dimensions of
caregiver burden: daily
support provided,
concern about user well-
being, & caregiver
effort
NA C
Three or more Devices
Agree et al.,
200513
S*/N N=4,008 adults ≥ age 65
yr. who reported ≥1 ADL
limitation. 64% female,
58% age 75+ yr.
NR/N Devices primarily for
mobility & bathing
↓ hours of informal care
with AT associated,
especially for persons
who are unmarried,
better educated, with
better cognitive skills
NA A
Agree et al.,
200011
S*/Y N=10,028 adults age 65+
yr. with a disability
NR/Y Various (e.g., for mobility,
dressing, & bathing)
Results were highly task
specific. ↓ informal care
when simple devices
were used
NA A
Brown &
Mulley,
199731
CS/N 80 year old woman with
multiple sclerosis & an 85
year old man
80 year old husband & a daughter/N Homemade assistive devices Two caregivers were
injured using the
devices
NA R
Chen et al.
200032
S/N N=20, 40% female, mean
age 74 yr.
N=20, 80% spouses, 20% children, 75%
female, mean age 67 yr./N
Various (e.g., for mobility,
dressing, & bathing)
Most used the devices
when caregiving (59%).
↓ assistance provided
(59%)
NA A
Kane et al.,
200137
S/N N=30 with moderate
disability (age ≥60 yr.)
N=30, 73% female, mean age 65 yr., 29
relatives, 66% spouses/Y
Various (e.g., for mobility,
dressing, & bathing)
Most agreed AT made it
easier to assist the care
recipient
NA C
Nochajski et
al., 199639
I +
CS/N
N=20 with cognitive
impairment, mean age of
79 yr.
N=17, 8 spouses, 6 children, 3 others; mean
age of 62 yr./N
Mobility, personal care,
sensory & cognitive
functioning
↓ need for assistance &
↑efficiently of care
NA C
Pettersson et
al., 200540
QI/Y N=12 with stroke
requiring help everyday
with personal or
instrumental activities
N=12 spouses, 10 female, median age of 75
yr./N
Mobility, personal care,
housekeeping, & home
modifications
Facilitated residential
living, but sometimes
caused 1) anxiety about
possible injury, 2)
accessibility problems,
& 3) concern about
social stigma
E C
Yang et al.,
199745
I/N N=7 with cognitive
impairment, 43% male,
mean age of 80 yr.
N=8, 75% female, mean age of 62 yr., all
relatives/N
Mobility, personal care,
sensory, environmental &
cognitive functioning
Devices reported to
assist care providers,
↓stress reported by 3
caregivers
NA C
Abbreviation for column 1: CS, = case studies, FG= Focus Group, I= Intervention Study, MM= mixed methods, N=no, NR= not reported, O=
Observations, QI= Qualitative Interviews, S= Survey, Y=yes *=Based on nationally representative 1994–95 United States National Health
Interview Survey data; Abbreviations for column 2: yr.=years; Abbreviations for column 6: ↓= decreased, ↑= increased; Abbreviations for column
7: E=Europe, NA=North America, Abbreviations for column 8: A= AT User, B= both(AT User and caregiver), C=caregiver, R= researcher
Am J Phys Med Rehabil. Author manuscript.
NIH-PA Author Manuscript NIH-PA Author Manuscript NIH-PA Author Manuscript
Ben Mortenson et al. Page 19
Table 2
Methodological Quality (Downs and Black criteria) and Level of Evidence (Centre for Evidence Based Medicine) of Quantitative Data
Study Agree 200011 Agree 200513 Allen 200627 Allen 200128 Baruch 200429 Brown 199731 Cahill 200733 Chen 200032 Frank, 200034 Kane, 200137 Kirby 199438 Nochajski, 199639 Topo 199743 Vincent, 200644 Yang, 199745
Q1: Hypothesis/objective 1 1 1 1 1 0 1 1 1 1 1 1 1 1 1
Q2: Main outcome measures clearly described 1 1 1 1 0 0 0 1 0 1 1 0 1 1 1
Q3: Patient characteristics clearly described 0 0 0 0 1 1 1 1 0 1 0 1 1 1 1
Q4: Interventions clearly described 0 0 0 0 1 1 1 0 0 0 0 1 1 0 0
Q5: Distributions of confounders in each group described 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0
Q6: Main findings clearly described 1 1 1 1 1 1 1 1 1 0 1 0 1 1 1
Q7: Estimates of variability for main outcomes 0 1 1 1 0 0 0 0 0 0 1 1 0 1 0
Q8: Adverse events reported 0 0 0 0 1 1 0 0 1 1 1 0 1 0 0
Q9: Characteristics of patients lost to follow up described 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0
Q10: Actual p values reported 0 0 0 0 0 0 0 1 0 1 1 1 0 1 0
Q11: Subjects asked to participate representative of
population
1 1 1 1 0 0 0 0 0 0 0 0 0 0 0
Q12: Subjects who participated representative of population 1 1 1 1 0 0 0 0 0 0 0 0 0 0 0
Q13: Staff, places, and facilities representative 1 1 1 1 0 0 0 0 0 0 0 0 0 0 0
Q14: Blinded subjects 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0
Q15: Blinded evaluators 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0
Q16: Any data dredging made clear 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1
Q17: Adjustment for different lengths of follow-up 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0
Q18: Appropriate statistical tests 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1
Q19: Compliance with intervention 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0
Q20: Main outcome measures reliable and valid 0 0 0 0 0 0 0 1 0 1 1 1 1 1 1
Q21: Selection bias 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0
Q22: Subjects in different groups recruited over same period 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0
Q23: Randomization 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0
Q24: Randomization concealed 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0
Q25: Adjustment for confounders 0 1 1 1 0 0 0 0 0 0 0 0 0 0 0
Q26: Losses to follow-up accounted for 0 0 0 0 0 0 1 0 0 0 0 1 1 1 0
Q27: Adequate sample size 1 1 1 1 0 0 0 0 0 0 1 0 0 0 0
Total 9 11 11 11 7 6 7 8 5 8 10 9 10 10 7
Level of Evidence (Centre for Evidence Based Medicine) 4 4 4 4 4 4 4 4 4 4 4 4 4 4 4
1= yes, 0= no or unable to determine
Am J Phys Med Rehabil. Author manuscript.
NIH-PA Author Manuscript NIH-PA Author Manuscript NIH-PA Author Manuscript
Ben Mortenson et al. Page 20
Table 3
Methodological Quality (CASP criteria) and Level of Evidence (Kearney’s criteria) of Qualitative Data
Question Cahill 200733 Boss 200630 Demers 200916 Frank 201035 Garceau 200736 Pettersson 200540 Rudman 200641 Starkhammar 200842 Topo 200743
Q1 Was there a clear
statement of the aims of the
study?
1 1 1 1 1 1 1 1 1
Q2 Is qualitative
methodology appropriate?
1 1 1 1 1 1 1 1 1
Q3 Was the research design
appropriate to address the
aims of the study? (justified)
1 1 1 1 1 1 1 1 1
Q4 Was the recruitment
strategy appropriate to the
aims of the research?
0 1 0 0 0 0 0 1 0
Q5 Were the data collected
in a way that addressed the
research issue?
0 1 1 1 1 1 1 1 0
Q6 Has the relationship
between the researcher and
participants been adequately
considered?
0 0 0 0 0 0 0 0 0
Q7 Have ethical issues been
taken into consideration?
1 1 0 1 0 0 0 1 1
Q8 Was the data analysis
sufficiently rigorous?
0 1 1 1 1 1 1 1 0
Q9 Is there a clear statement
of the findings?
1 1 1 1 1 1 1 1 1
Q 10 How valuable is the
research
1 1 1 1 1 1 1 1 0
Total 6 9 7 8 7 7 7 9 5
Grade (Kearney’s criteria) V III IV IV V III III III V
Am J Phys Med Rehabil. Author manuscript.
NIH-PA Author Manuscript NIH-PA Author Manuscript NIH-PA Author Manuscript
Ben Mortenson et al. Page 21
Table 4
Categorization of the outcomes identified according to the Demers et al.16 framework for understanding
outcomes for caregivers who assist AT users
Studies
Effect on Primary Stressors
Caregiver injury with device use 31, 38
Decreases physical effort 16, 34, 35
Assists caregiver 32, 37, 45
Increases efficiency of care provision 39, 44
Decrease in hours of care/ frequency of assistance 11, 13, 27, 28, 29,30
Increase in hours of care 27
Increased physical effort transporting the device 35
Vigilance 41
Effect on Secondary Stressors
Increases free time for participation in personal & shared activities 16, 35, 40
Home modifications difficult to accept initially 40
Participation-Related Outcomes
Device interferes with caregiver’s activities 42
Accessibility issues may affect the caregiver’s activities 37, 40, 41
Psychological Health Outcomes
Frustration with need to provide cues to use device 33, 43
Increases sense of security/ decreases worry or stress 34, 36, 42, 44–45,
Concern about potential injury of user 16, 30, 35, 40, 41,
Concern about stigma 37, 40
Am J Phys Med Rehabil. Author manuscript.
