Effects of a caregiver-inclusive assistive technology intervention: a randomized controlled trial.

BACKGROUND: The principal aim of this study was to investigate whether a caregiver-inclusive assistive technology intervention improved older care recipients' functional autonomy and decreased the perceived burden of their family caregivers compared to customary care. METHODS: The study was a single-blind, mixed-methods, randomized controlled trial with baseline data collection and follow-ups at 6-, 22-, and 58-weeks after baseline evaluation, which was prospectively registered ( ClinicalTrials.gov Identifier: NCT01640470. Registered 11/21/2011). Dyads comprising a care recipient and family caregiver were randomly assigned to either a caregiver-inclusive experimental group (N = 44) or a customary-care comparison group (N = 46). Eligible care recipients were aged ≥55 years and had one or more limitations with mobility or daily activities, and family caregivers provided at least four hours per week of assistance. Outcome measures were administered to both groups at baseline and at the three follow-up time points. The data collectors were blinded regarding participants' intervention group. The primary outcome measures were the Functional Autonomy Measurement System to assess care recipients' functional performance, and the Caregiver Assistive Technology Outcome Measure to assess caregivers' burden. Qualitative interviews examined participants' perceptions of the caregiver-inclusive and customary care interventions. RESULTS: The experimental intervention addressed significantly more dyad-identified problematic activities, but caregiver involvement was evident in both groups and outcomes were not significantly different over time. In both groups, care recipients' functional autonomy declined significantly (P < .01), and caregivers' activity-specific and overall burden decreased significantly (P < .01). CONCLUSIONS: Given the unintended congruence between the caregiver-inclusive and customary care interventions, the overall findings lend support for the provision of assistive technology to reduce caregiver burden.

How a diverse research ecosystem has generated new rehabilitation technologies: Review of NIDILRR's Rehabilitation Engineering Research Centers.

Over 50 million United States citizens (1 in 6 people in the US) have a developmental, acquired, or degenerative disability. The average US citizen can expect to live 20% of his or her life with a disability. Rehabilitation technologies play a major role in improving the quality of life for people with a disability, yet widespread and highly challenging needs remain. Within the US, a major effort aimed at the creation and evaluation of rehabilitation technology has been the Rehabilitation Engineering Research Centers (RERCs) sponsored by the National Institute on Disability, Independent Living, and Rehabilitation Research. As envisioned at their conception by a panel of the National Academy of Science in 1970, these centers were intended to take a "total approach to rehabilitation", combining medicine, engineering, and related science, to improve the quality of life of individuals with a disability. Here, we review the scope, achievements, and ongoing projects of an unbiased sample of 19 currently active or recently terminated RERCs. Specifically, for each center, we briefly explain the needs it targets, summarize key historical advances, identify emerging innovations, and consider future directions. Our assessment from this review is that the RERC program indeed involves a multidisciplinary approach, with 36 professional fields involved, although 70% of research and development staff are in engineering fields, 23% in clinical fields, and only 7% in basic science fields; significantly, 11% of the professional staff have a disability related to their research. We observe that the RERC program has substantially diversified the scope of its work since the 1970's, addressing more types of disabilities using more technologies, and, in particular, often now focusing on information technologies. RERC work also now often views users as integrated into an interdependent society through technologies that both people with and without disabilities co-use (such as the internet, wireless communication, and architecture). In addition, RERC research has evolved to view users as able at improving outcomes through learning, exercise, and plasticity (rather than being static), which can be optimally timed. We provide examples of rehabilitation technology innovation produced by the RERCs that illustrate this increasingly diversifying scope and evolving perspective. We conclude by discussing growth opportunities and possible future directions of the RERC program.

Guidelines for Adult Stroke Rehabilitation and Recovery: A Guideline for Healthcare Professionals From the American Heart Association/American Stroke Association.

PURPOSE: The aim of this guideline is to provide a synopsis of best clinical practices in the rehabilitative care of adults recovering from stroke. METHODS: Writing group members were nominated by the committee chair on the basis of their previous work in relevant topic areas and were approved by the American Heart Association (AHA) Stroke Council's Scientific Statement Oversight Committee and the AHA's Manuscript Oversight Committee. The panel reviewed relevant articles on adults using computerized searches of the medical literature through 2014. The evidence is organized within the context of the AHA framework and is classified according to the joint AHA/American College of Cardiology and supplementary AHA methods of classifying the level of certainty and the class and level of evidence. The document underwent extensive AHA internal and external peer review, Stroke Council Leadership review, and Scientific Statements Oversight Committee review before consideration and approval by the AHA Science Advisory and Coordinating Committee. RESULTS: Stroke rehabilitation requires a sustained and coordinated effort from a large team, including the patient and his or her goals, family and friends, other caregivers (eg, personal care attendants), physicians, nurses, physical and occupational therapists, speech-language pathologists, recreation therapists, psychologists, nutritionists, social workers, and others. Communication and coordination among these team members are paramount in maximizing the effectiveness and efficiency of rehabilitation and underlie this entire guideline. Without communication and coordination, isolated efforts to rehabilitate the stroke survivor are unlikely to achieve their full potential. CONCLUSIONS: As systems of care evolve in response to healthcare reform efforts, postacute care and rehabilitation are often considered a costly area of care to be trimmed but without recognition of their clinical impact and ability to reduce the risk of downstream medical morbidity resulting from immobility, depression, loss of autonomy, and reduced functional independence. The provision of comprehensive rehabilitation programs with adequate resources, dose, and duration is an essential aspect of stroke care and should be a priority in these redesign efforts. (Stroke.2016;47:e98-e169. DOI: 10.1161/STR.0000000000000098.).

Effect of a tailored assistive technology intervention on older adults and their family caregiver: a pragmatic study protocol.

BACKGROUND: Many older adults with mobility limitations use assistive technology to help them perform daily activities. However, little attention has been paid to the impact on their family caregivers. This neglect produces an incomplete portrayal of the outcomes of assistive technology provision. This paper describes the protocol for a study that examines the impact of a tailored assistive technology intervention that is inclusive of assistance users and their family caregivers. METHODS/DESIGN: This research will use a combination of quantitative and qualitative methods. The quantitative portion will be an experimental, single-blinded study in which participants are randomly assigned to either an experimental assistive technology intervention or a standard care group. We will enroll 240 participants (120 dyads) into the study from three Canadian sites. Participants will include older adults (>55) and family caregivers who provide ≥4 h per week of assistance with daily activities and social participation. The primary outcome measure for the older adults will be the Functional Autonomy Measurement System, and the primary outcome measure for the caregivers will be the Caregiver Assistive Technology Outcomes Measure. Qualitative data will be collected through detailed records of the therapists' interventions, as well as through interviews with dyads and therapists following the interventions. Data collection will occur at baseline (T0) with follow-ups at 6 weeks (T1), 22 weeks (T2), and 58 weeks (T3) after baseline evaluation. DISCUSSION: The findings from this study will help service providers and clinicians to move forward with assistive technology recommendations that are more attuned to the needs of both older adults with mobility limitations and their family caregivers. Additionally, the study's findings will enhance our conceptual understanding of the spectrum of assistive technology outcomes and set the stage for econometric studies assessing cost-effectiveness. TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT01640470 . Registered 11/21/2011.

Using AAC technology to access the world.

This paper describes the monumental shift in the nature of augmentative and alternative communication (AAC) access that has occurred over the past three decades. In its earliest days AAC technology was directed at enabling interpersonal face-to-face interactions mainly for persons with physical impairment. Contemporary AAC access attempts to mirror the access needs of a broader population. Accordingly AAC access to today's mainstream technologies expands the focus from interpersonal communication to access of information and services over the expanding World Wide Web. With this expanded view comes a new range of challenges and opportunities. At the same time AAC has expanded its reach to include more people with a wider range of complex communication needs.

Treatment theory, intervention specification, and treatment fidelity in assistive technology outcomes research.

Recent reports in the rehabilitation literature have suggested that treatment theory, intervention specification, and treatment fidelity have important implications for the design, results, and interpretation of outcomes research. At the same time, there has been relatively little discussion of how these concepts bear on the quality of assistive technology (AT) outcomes research. This article describes treatment theory, intervention specification, and treatment fidelity as interconnected facets of AT outcome studies that fundamentally affect the interpretation of their findings. The discussion of each is elucidated using case examples drawn from the AT outcomes research literature. Recommendations are offered for strengthening these components of AT outcomes research.

The Digital Health Revolution and People with Disabilities: Perspective from the United States.

This article serves as the introduction to this special issue on Mobile Health and Mobile Rehabilitation for People with Disabilities. Social, technological and policy trends are reviewed. Needs, opportunities and challenges for the emerging fields of mobile health (mHealth, aka eHealth) and mobile rehabilitation (mRehab) are discussed. Healthcare in the United States (U.S.) is at a critical juncture characterized by: (1) a growing need for healthcare and rehabilitation services; (2) maturing technological capabilities to support more effective and efficient health services; (3) evolving public policies designed, by turns, to contain cost and support new models of care; and (4) a growing need to ensure acceptance and usability of new health technologies by people with disabilities and chronic conditions, clinicians and health delivery systems. Discussion of demographic and population health data, healthcare service delivery and a public policy primarily focuses on the U.S. However, trends identified (aging populations, growing prevalence of chronic conditions and disability, labor shortages in healthcare) apply to most countries with advanced economies and others. Furthermore, technologies that enable mRehab (wearable sensors, in-home environmental monitors, cloud computing, artificial intelligence) transcend national boundaries. Remote and mobile healthcare delivery is needed and inevitable. Proactive engagement is critical to ensure acceptance and effectiveness for all stakeholders.

Big Data Analytics and Sensor-Enhanced Activity Management to Improve Effectiveness and Efficiency of Outpatient Medical Rehabilitation.

Numerous societal trends are compelling a transition from inpatient to outpatient venues of care for medical rehabilitation. While there are advantages to outpatient rehabilitation (e.g., lower cost, more relevant to home and community function), there are also challenges including lack of information about how patient progress observed in the outpatient clinic translates into improved functional performance at home. At present, outpatient providers must rely on patient-reported information about functional progress (or lack thereof) at home and in the community. Information and communication technologies (ICT) offer another option-data collected about the patient's adherence, performance and progress made on home exercises could be used to help guide course corrections between clinic visits, enhancing effectiveness and efficiency of outpatient care. In this article, we describe our efforts to explore use of sensor-enhanced home exercise and big data analytics in medical rehabilitation. The goal of this work is to demonstrate how sensor-enhanced exercise can improve rehabilitation outcomes for patients with significant neurological impairment (e.g., from stroke, traumatic brain injury, and spinal cord injury). We provide an overview of big data analysis and explain how it may be used to optimize outpatient rehabilitation, creating a more efficient model of care. We describe our planned development efforts to build advanced analytic tools to guide home-based rehabilitation and our proposed randomized trial to evaluate effectiveness and implementation of this approach.

AAC technology transfer: an AAC-RERC report.

Transferring innovative technologies from the university to the manufacturing sector can often be an elusive and problematic process. The Rehabilitation and Engineering Research Center on Communication Enhancement (AAC-RERC) has worked with the manufacturing community for the last 10 years. The purpose of this article is to discuss barriers to technology transfer, to outline some technology transfer strategies, and to illustrate these strategies with AAC-RERC related activities.

Clinician Perspectives on mRehab Interventions and Technologies for People with Disabilities in the United States: A National Survey.

Mobile health and mobile rehabilitation (mHealth and mRehab) services and technologies have attracted considerable interest from healthcare providers, technology vendors, rehabilitation engineers, investors and policy makers in recent years. Successful adoption and use of mHealth/mRehab requires clinician support and engagement, including the ability to identify appropriate use cases and possible barriers to use for themselves and their patients, and acquire adequate knowledge and confidence using mHealth/mRehab interventions. This article reports results from a survey of rehabilitation clinicians in the United States on their attitudes, experience, expectations and concerns regarding mHealth/mRehab interventions and technologies. Over 500 clinicians in physical, occupational, speech, recreation and psychological therapy professions, among others, participated in the survey. Respondents reported that an overwhelming majority of their patients need additional therapy after discharge from inpatient environments, and over half of outpatients need additional therapy between visits. A large majority reported prescribing specific exercises and interventions for patients to work on outside of the clinic. However, only 51% reported being comfortable integrating mRehab technology into their practice; and only 23% feel knowledgeable about rehabilitation technology currently available. Technologies to support mRehab are maturing rapidly. Clinicians recognize the need for mRehab, but their knowledge and confidence prescribing mRehab represents a significant barrier to adoption.

LiveWell RERC State of the Science Conference Report on ICT Access to Support Community Living, Health and Function for People with Disabilities.

This article summarizes the proceedings of the three session State of the Science (SOS) Conference that was conducted by the Rehabilitation Engineering Research Center for Community Living, Health and Function (LiveWell RERC) in June 2019 in Toronto, Canada. RERCs customarily convene an SOS conference toward the end of their five-year funding cycle in order to assess the current state and identify potential future research, development, and knowledge translation efforts needed to advance their field. The first two sessions focused on the current and future state of information and communication technology (ICT) for mobile health (mHealth) and mobile rehabilitation (mRehab). The third session was a wide-ranging discussion of pressing needs for future research and development in the field. Several "big ideas" resulted from the discussion among participants in the SOS Conference that should inform the structure and operation of future efforts, including: (1) identifying active ingredients of interventions, (2) incorporating effective behavior-change techniques into all interventions, (3) including measures of social determinants of health in evaluation studies, (4) incorporating user-customizable features into technology solutions, and (5) ensuring "discoverability" of research and development outputs by stakeholders via structured and continuous outreach, education and training. Substantive areas of work include gaming and esports, the gamification of interventions for health and fitness, the cultivation of community supports, and continuous outreach and education wherever a person with a disability may live.

Tracking mobility-related assistive technology in an outcomes study.

The objective of this follow-up study was to describe changes in the mobility-related assistive technology devices (ATDs) that are used from shortly after discharge from a hospital setting until 5-6 months later. One hundred and thirty-nine participants who had one or more mobility ATDs (canes, crutches, walkers, and wheelchairs) that had been recommended during hospitalization were interviewed an average of 5.5 weeks after discharge and an average of 23.2 weeks later. Information about mobility ATD usage was obtained by questionnaire during face-to-face interviews. The SF-36 was used to assess perceived health status, both physical and mental, as an additional outcome. Results show that at follow-up, only 23.3% of participants were using the ATD provided at baseline as their primary aid. Seven distinct groups of participants were noted based on individual experience with ATD use from the time of discharge to follow-up. Those groups varied according to continued versus discontinued use of an ATD, single versus multiple ATD use across time, and primary versus secondary importance attributed to the ATD. The groups also differed in terms of their differential association with rehabilitation diagnosis, age, as well as physical and mental perceived health status. The findings have implications for designing ATD outcome studies and for interpreting the relationship of ATD outcomes to other variables. The information about changes in mobility-related ATDs can also help rehabilitation specialists at the point of device referral target their patients for interventions that will either increase their adherence to device prescriptions or support nondevice strategies for managing disabilities.

Mobile Healthcare and People with Disabilities: Current State and Future Needs.

Significant health disparities exist between the general population and people with disabilities, particularly with respect to chronic health conditions. Mobile healthcare-the delivery of healthcare via mobile communication devices-is witnessing tremendous growth and has been touted as an important new approach for management of chronic health conditions. At present, little is known about the current state of mobile healthcare for people with disabilities. Early evidence suggests they are not well represented in the growth of mobile healthcare, and particularly the proliferation of mobile health software applications (mHealth apps) for smartphones. Their omission in mHealth could lead to further health disparities. This article describes our research investigating the current state of mHealth apps targeting people with disabilities. Based on a multi-modal approach (literature review, Internet search, survey of disabled smartphone users), we confirm that people with disabilities are under-represented in the growth of mHealth. We identify several areas of future research and development needed to support the inclusion of people with disabilities in the mHealth revolution.

Enhancing AAC connections with the world.

The availability of new technologies has changed how we control devices, exchange information, and communicate with others. Significant barriers, however, have prevented many individuals who use augmentative and alternative communication (AAC) from accessing the technology and computer-based activities available in today's "Information Society." In this paper we discuss the benefits and challenges to increased interoperability between AAC and mainstream technologies. We outline suggested roles and activities for six stakeholder groups: (a) individuals who use AAC, (b) individuals who assist in selecting and supporting use of AAC devices, (c) AAC researchers, (d) AAC device manufacturers, (e) mainstream application developers and technology manufacturers, and (f) public policy makers. We also provide suggestions for future research, public policy, and technical development.

Psychometric and administrative properties of measures used in assistive technology device outcomes research.

Although there have been numerous calls for increasing the quantity and quality of assistive technology outcomes research, no one has analyzed the nature of data that the field has been accumulating. This article summarizes our evaluation of 82 outcome studies, published between 1980 and 2001, addressing assistive technology devices (ATDs). Our data indicate that the "typical" ATD outcomes study published in the past 20 years is one that (a) used a sample population that was diverse in terms of age, disability population, and type of ATD being used; (b) measured user-reported dependent variables with instruments designed specifically for the study; (c) did not report adequate information on the reliability and validity for the measurement instruments that were used; (d) did not discuss the staff workload associated with learning, administering, and scoring its data collection tools; and (e) did not differentiate its findings in terms of distinguishable participant subgroups. Several suggestions are provided to guide future development of assistive technology outcome measures in the domains of usability, quality of life, and social role performance. In addition, seven recommendations are offered to outcomes researchers, policy makers, journal editors, and reviewers in order to improve the reporting of assistive technology outcomes research.

Development and preliminary evaluation of the caregiver assistive technology outcome measure.

INTRODUCTION: Assistive technology is often recommended with the aim of increasing user independence and reducing the burden on informal caregivers. However, until now, there has been no tool to measure the outcomes of this process for caregivers. OBJECTIVES: To describe the development of the Caregiver Assistive Technology Outcome Measure (CATOM), a tool developed to measure the impact of assistive technology interventions on the burden experienced by informal caregivers, and to undertake preliminary evaluation of its psychometric properties. METHODS: Based on an existing conceptual framework, existing measures were reviewed to identify potential items in a preliminary version of the measure. Cognitive interviewing was used to identify items needing clarification. A revised CATOM and manual were then reviewed by clinicians. After revising some items based on the interview findings, the measure was piloted as part of an intervention study examining the impact of assistive technology on the users' informal caregivers (n = 44). RESULTS: Based on a review of 12 existing measures, a 3-part measure was developed and questions were refined based on cognitive interviews with informal caregivers and feedback experienced assistive technology practitioners. For the activity-specific and overall portions of the measure, the 6-week, test-retest intraclass correlations coefficients were 0.88 (95% CI 0.64-0.96) and 0.86 (95% CI 0.60-0.95), respectively. The CATOM data correlated as hypothesized with other measures. CONCLUSION: The CATOM is a promising measure with good content validity and encouraging psychometric properties.

Connecting AAC devices to the world of information technology.

Modern day information technology (IT) is converging around wireless networks. It is now possible to check E-mail and view information from the World Wide Web from commercially available mobile phones. For individuals with disabilities, the ability to access multiple and different types of information not only promises convenience, but also can help to promote independence and facilitate access to public and private information systems. There are many barriers to access for people with disabilities, including technological hurdles, security, privacy, and access to these emerging wireless technologies. However, legislation, advocacy, standards, and research and development can ensure that users of augmentative and alternative communication (AAC) and assistive technology have access to these technologies. This article provides a historical context for the field of AAC and IT development, a review of the current state of these technologies, a glimpse of the potential of wireless information access for the lives of AAC users, and a description of some of the barriers and enablers to making access available to users of AAC and assistive technologies.

Effects of an assistive technology intervention on older adults with disabilities and their informal caregivers: an exploratory randomized controlled trial.

OBJECTIVE: The aim of this study was to demonstrate experimentally that an assistive technology (AT) intervention improves older AT users' activity performance and satisfaction with activity performance and decreases their caregivers' sense of burden. DESIGN: This study was a delayed intervention, randomized control trial. Baseline data were collected on 44 community-dwelling AT user-caregiver dyads in Vancouver, British Columbia, and Montreal, Quebec. The primary outcome measures for AT users were the satisfaction and accomplishment scales from the Assessment of Life Habits. The primary outcome measure for caregivers was the Caregiver Assistive Technology Outcome Measure, which assessed burden associated with dyad-identified problematic activities. RESULTS: After the intervention, assistance users in the immediate intervention group reported significantly increased satisfaction with activity performance (P < 0.001) and improved accomplishment scores (P = 0.014). Informal caregivers in the immediate intervention group experienced significantly decreased burden with the dyad-identified problematic activity (P = 0.013). Participants in the delayed intervention group experienced similar benefits after the intervention. Improvements for both groups were mostly maintained 4 mos after the conclusion of the intervention. CONCLUSIONS: This is the first experimental study to demonstrate that the provision of AT decreases caregiver burden. If confirmed and extended by subsequent research, the findings have significant policy and practice implications and may enable health care providers to advocate for improved access to AT provision and the related follow-up services.

How assistive technology use by individuals with disabilities impacts their caregivers: a systematic review of the research evidence.

Informal caregivers are a critical yet frequently unacknowledged part of the healthcare system. It is commonly presumed that providing assistive technology will decrease the burden of their care provision; however, no review has evaluated the evidence behind this assumption. Therefore, a systematic review was undertaken to evaluate evidence of the impact of assistive technology 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, PubMed, and active researchers in this area. Twenty-two studies met the specified inclusion criteria. Collectively, the findings suggest that assistive technology use helps caregivers by diminishing some of the physical and emotional effort entailed in supporting individuals with disability. However, confidence in this causal connection is limited because of the study designs that were used. This undermines the understanding of the impacts of assistive technology use on the users' informal caregivers.