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.

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.

Looking back and thinking forward: 20 years of disability and rehabilitation research.

The National Center for Medical Rehabilitation Research recently celebrated its 20th Anniversary. The celebration included a symposium highlighting advances in rehabilitation science over the past 2 decades. The anniversary also reminds us of the challenges that remain in order to strengthen the foundation of disability and rehabilitation research. These challenges have been described in 3 reports published by the Institute of Medicine (IOM) in 1991, 1997, and 2007. Three areas of concern appear across the IOM reports. These include (1) the lack of a comprehensive disability monitoring program, (2) the need for better integration and coordination of federally supported disability research, and (3) funding levels that are inconsistent with the current and projected impacts of disability on individuals, families, and communities. In this commentary we examine the lack of progress in addressing the recommendations contained in the IOM reports. We conclude that renewed efforts by consumers, clinicians, educators, researchers, administrators, and policy makers are needed to achieve the promise of rehabilitation and disability science identified 20 years ago.

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.

Comparing Assessments of Physical Functional Independence in Older Adults With Mobility Limitations.

OBJECTIVES: The aims of the study were (1) to assess the agreement and correlation between self-reported functional independence and observations of family caregivers in a heterogeneous population of community-dwelling older adults with disabilities and (2) to determine how self-reports and caregiver reports correlate with evaluator rated functional independence over time. DESIGN: Data were drawn from a larger, randomized controlled trial examining the effects of a caregiver-inclusive intervention on outcomes of care recipients and their family caregivers. Functional independence measures were obtained using a self-report version of the Functional Independence Measure (care recipient self-reported Functional Independence Measure, caregiver self-reported Functional Independence Measure) and the Functional Autonomy Measurement System (evaluator perspective). They were administered at baseline (preintervention) and after the intervention at 6, 22, and 58 wks. RESULTS: Bivariate correlation analyses of 90 dyads consisting of older care recipients and their family caregivers reported moderate to very strong correlations between the three functional independence measures across all time points (rS = 0.45-0.91, P < 0.01). Bland-Altman analyses revealed a small systematic bias between care recipient and caregiver assessments of functional independence, with participants reporting higher scores across all time points (mean difference = 2.00-2.97). CONCLUSIONS: There is substantial consistency among the self-assessed, caregiver-assessed, and evaluator assessed functional independence of older adults. Caregivers may be used as proxies for community-dwelling older adults without severe cognitive impairments with functional limitations. TO CLAIM CME CREDITS: Complete the self-assessment activity and evaluation online at http://www.physiatry.org/JournalCME CME OBJECTIVES: After reviewing this article, readers will be able to: (1) Describe the strength of association between self-reported functional independence and observations of family caregivers in a heterogeneous population of community-dwelling older adults with disabilities over time; (2) Describe the level of agreement between self-reported functional independence and observations of family caregivers over time; and (3) Describe the associations among self-reported, caregiver reported and evaluator rated functional independence over time. LEVEL: Advanced ACCREDITATION: The Association of Academic Physiatrists is accredited by the Accreditation Council for Continuing Medical Education to provide continuing medical education for physicians.The Association of Academic Physiatrists designates this Journal-based CME activity for a maximum of 1.0 AMA PRA Category 1 Credit(s)™. Physicians should only claim credit commensurate with the extent of their participation in the activity.

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.

Caregivers' experiences with the selection and use of assistive technology.

Qualitative data from a mixed-methods clinical trial are used to examine caregivers' experiences with the selection and use of assistive technology to facilitate care recipients' independence. Through a thematic analysis of interviews from 27 caregivers, three broad themes were identified. "A partial peace of mind" described the generally positive psychological impacts from assistive technology, mainly reduced stress and a shift in caregiving labour from physical tasks to a monitoring role. "Working together" explored the caregivers' experiences of receiving assistive technology and the sense of collaboration felt by caregivers during the intervention process. Finally, "Overcoming barriers" addressed two impediments to accessing assistive technology: lack of funding and appointment wait times for service providers. The findings suggest that assistive technology provision by prescribers plays a beneficial role in the lives of caregivers, but access to such benefits can be hampered by contextual constraints. Implications for rehabilitation The study findings have a number of implications for rehabilitation practice: Family caregivers can be instrumental in determining what assistive technology is needed and then procured. Their involvement in the selection process is desirable because assistive technology may have both positive and negative impacts on them, and they themselves may use the devices chosen. Involving family caregivers as more active partners in the process of assistive technology provision may represent a greater time investment in the short term, but may contribute to better long-term outcomes for care recipients and caregivers as well. Limited access to funding and long appointment wait times are potential barriers to obtaining necessary assistive technologies.

Rehabilitation Medicine Summit: Building Research Capacity--executive summary.

The general objective of the Rehabilitation Medicine Summit: Building Research Capacity was to advance and promote research in medical rehabilitation by making recommendations to expand research capacity. The 5 elements of research capacity that guided the discussions were: (1) researchers, (2) research environment, infrastructure, and culture, (3) funding, (4) partnerships, and (5) metrics. The [approximately] 100 participants included representatives of professional organizations, consumer groups, academic departments, researchers, governmental funding agencies, and the private sector. The small-group discussions and plenary sessions generated an array of problems, possible solutions, and recommended actions. A post-Summit, multi-organizational initiative is called to pursue the agendas outlined in this report.

Rehabilitation medicine summit: building research capacity executive summary.

The general objective of the "Rehabilitation Medicine Summit: Building Research Capacity" was to advance and promote research in medical rehabilitation by making recommendations to expand research capacity. The five elements of research capacity that guided the discussions were: 1) researchers; 2) research culture, environment, and infrastructure; 3) funding; 4) partnerships; and 5) metrics. The 100 participants included representatives of professional organizations, consumer groups, academic departments, researchers, governmental funding agencies, and the private sector. The small group discussions and plenary sessions generated an array of problems, possible solutions, and recommended actions. A post-Summit, multi-organizational initiative is called to pursue the agendas outlined in this report (see Additional File 1).

Rehabilitation Medicine Summit: building research capacity.

The general objective of the "Rehabilitation Medicine Summit: Building Research Capacity" was to advance and promote research in medical rehabilitation by making recommendations to expand research capacity. The five elements of research capacity that guided the discussions were: (1) researchers; (2) research culture, environment, and infrastructure; (3) funding; (4) partnerships; and (5) metrics. The 100 participants included representatives of professional organizations, consumer groups, academic departments, researchers, governmental funding agencies, and the private sector. The small group discussions and plenary sessions generated an array of problems, possible solutions, and recommended actions. A post-Summit, multi-organizational initiative is called to pursue the agendas outlined in this report.

Rehabilitation Medicine Summit: Building Research Capacity: executive summary.

The general objective of the "Rehabilitation Medicine Summit: Building Research Capacity" was to advance and promote research in medical rehabilitation by making recommendations to expand research capacity. The five elements of research capacity that guided the discussions were: (1) researchers; (2) research culture, environment, and infrastructure; (3) funding; (4) partnerships; and (5) metrics. The 100 participants included representatives of professional organizations, consumer groups, academic departments, researchers, governmental funding agencies, and the private sector. The small group discussions and plenary sessions generated an array of problems, possible solutions, and recommended actions. A post-Summit, multi-organizational initiative is called to pursue the agendas outlined in this report.

Rehabilitation medicine summit: building research capacity (executive summary).

The general objective of the "Rehabilitation Medicine Summit: Building Research Capacity" was to advance and promote research in medical rehabilitation by making recommendations to expand research capacity. The 5 elements of research capacity that guided the discussions were (a) researchers; (b) research culture, environment, and infrastructure; (c) funding; (d) partnerships; and (e) metrics. The 100 participants included representatives of professional organizations, consumer groups, academic departments, researchers, governmental funding agencies, and the private sector. The small group discussions and plenary sessions generated an array of problems, possible solutions, and recommended actions. A postsummit, multiorganizational initiative is called for to pursue the agendas outlined in this report.

Rehabilitation Medicine Summit: Building Research Capacity--executive summary.

The advancement of medical science depends on the production, availability, and utilization of new information generated by research. A successful research enterprise depends not only on a carefully designed agenda that responds to clinical and societal needs but also on the research capacity necessary to perform the work. Research that is likely to enhance clinical practice presupposes the existence of a critical mass of investigators working as teams in supportive environments. Unfortunately, far too little research capacity of that kind exists in rehabilitation medicine to ensure a robust future for the field. The "Rehabilitation Medicine Summit: Building Research Capacity" was conceptualized as a way of fashioning a long-term plan to foster the required developments.

Rehabilitation medicine summit: building research capacity.

The general objective of the "Rehabilitation Medicine Summit: Building Research Capacity" was to advance and promote research in medical rehabilitation by making recommendations to expand research capacity. The five elements of research capacity that guided the discussions were 1) researchers; 2) research culture, environment, and infrastructure; 3) funding; 4) partnerships; and 5) metrics. The 100 participants included representatives of professional organizations, consumer groups, academic departments, researchers, governmental funding agencies, and the private sector. The small group discussions and plenary sessions generated an array of problems, possible solutions, and recommended actions. A post-Summit, multi-organizational initiative is called to pursue the agendas outlined in this report.

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.

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.

Development and evaluation of a new taxonomy of mobility-related assistive technology devices.

OBJECTIVE: This article reports on the development of a new taxonomy for mobility-related assistive technology devices. DESIGN: A prototype taxonomy was created based on the extant literature. Five mobility device experts were engaged in a modified Delphi process to evaluate and refine the taxonomy. RESULTS: Multiple iterations of expert feedback and revision yielded consensual agreement on the structure and terminology of a new mobility device taxonomy. The taxonomy uses a hierarchical framework to classify ambulation aids and wheeled mobility devices, including their key features that impact mobility. Five attributes of the new taxonomy differentiate it from previous mobility-related device classifications: (1) hierarchical structure, (2) primary device categories are grouped based on their intended mobility impact, (3) comprehensive inclusion of technical features, (4) a capacity to assimilate reimbursement codes, and (5) availability of a detailed glossary. CONCLUSIONS: The taxonomy is intended to support assistive technology outcomes research. The taxonomy will enable researchers to capture mobility-related assistive technology device interventions with precision and provide a common terminology that will allow comparisons among studies. The prominence of technical features within the new taxonomy will hopefully promote research that helps clinicians predict how devices will perform, thus aiding clinical decision making and supporting funding recommendations.