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Introduction
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Family caregivers -- including relatives, friends, neighbors, and others who provide unpaid support -- perform immensely valuable work, helping older adults with chronic disabilities get the help they need at home, rather than entering a facility. Recently, ASPE funded a study that combined data from the 2004 National Long Term Care Survey Caregiver Supplement with MDS data to examine the impacts of caregiver stress on nursing home use (Spillman & Long, 2009). Results showed that caregiver stress was the most powerful predictor of an extended nursing home stay, accounting for about a quarter of nursing home entries from the community. Of the dimensions of caregiver stress, physical strain, followed by financial hardship, was the most powerful predictor -- higher than emotional stress or social constraints. Nearly a third (31%) of caregivers reported that caregiving is a physical strain. Caregivers interviewed for the survey indicated that physical strain from activities such as lifting and transferring was a big problem for them.
Common causes of physical strain among all caregivers are transferring/lifting individuals and communication problems with people with dementia (Wångblad, Ekblad, Wijk, & Ivanoff, 2009). Oftentimes people with dementia become confused due to their inability to interpret signals from their bodies or from their surroundings, which contributes to resistance towards caregivers when they attempt to transfer them. In addition, over 50% of the caregivers surveyed were over the age of 65, which raises their risk of physical strain when they provide this assistance.
The problem of physical strain has received little attention in family caregiver support efforts, with most programs focused on emotional support or respite. A recent two-part study sought to identify ways to accelerate the use of AT/HM to reduce physical strain among family caregivers. Part I and Appendix A summarize the research component of the study, which involved a systematic literature review to assess and synthesize the evidence base for AT/HM in reducing family caregiver physical strain. Part II will present findings from the adoption/dissemination component which focused on developing user-friendly resources and suggestions for how to encourage and facilitate the spread of AT/HM to mitigate family caregiver physical strain. Examples of dissemination materials are provided in the Appendices.
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Comprehensive Literature Review
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To enhance understanding of AT/HM interventions that could benefit family caregivers, we included published and unpublished research on:
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Technologies and programs designed to reduce physical strain/injuries among caregiving staff in institutions/residential facilities (nursing facilities, hospitals, assisted living facilities). Compared with the scant literature on family caregiver physical strain, more research activity has focused on technologies to reduce injuries among paid caregivers, with most of the focus on caregiving staff in nursing facilities and hospitals. Workers in nursing and residential care facilities experienced the highest injury rates of any occupational setting in 2010, according to data recently released by the U.S. Bureau of Labor Statistics (PHI National, 2011). This literature is relevant to family caregivers, because although paid caregivers and family caregivers have different circumstances, they provide many of the same types of support and have many of the same physical needs (DSW Resource Center, 2011).
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Technologies and injury prevention programs designed to reduce physical strain/injuries among the home care workforce.
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AT/HM services designed to promote independence of older adults with disabilities living at home. While the focus of this study is on reducing physical strain for caregivers, any device that increases the level of independence for the care recipient is likely to simultaneously decrease the amount of assistance needed and thereby indirectly relieve burden for care providers (Mann, 2001).
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Programs providing AT/HM services with a direct focus on family caregivers.
To identify relevant published and unpublished studies, we combined a search of the academic literature in PubMed/MEDLINE with a targeted Internet search of websites with information about technology and long-term care. These websites included the National Rehabilitation Information Center literature database (http://www.naric.com/research/rehab/default.cfm), http://www.techforltc.org, http://www.hcbs.org, http://www.colemaninstitute.org, http://www.abledata.com, http://www.gerontechnology.info, and http://www.caregiver.org. Additional studies surfaced through other sources, including examination of reference lists of studies included in the literature review, conference proceedings, and discussions with members of the study's TEP and CAP.
To address the study objectives, the PubMed search combined statements for five concepts: (1) caregivers/care settings, (2) physical strain, (3) AT, (4) HM, and (5) physical strain prevention efforts (Table A-1). A preliminary search led to many studies touching on the topic of AT and caregiver physical strain, including many laboratory tests of devices. The scope of the review was then refined to exclude laboratory studies and focus on studies examining the use of AT/HM in real-world settings. The review was limited to English language articles involving adult participants, excluding articles about caregivers of children with disabilities because they would likely need different types of technologies. We included studies with any type of design that addressed the research questions.
The final search strategy was executed in PubMed/MEDLINE on October 14, 2010, and resulted in a total of 431 "hits." An updated search was carried out approximately one year later, on October 6, 2011, to identify new studies published during the past year, which yielded an additional 15 hits, for a total of 446 articles.
A data abstraction table (Appendix A) was used to enter detailed information on included studies, including bibliographic information; details on the population, setting, and intervention examined (types of AT/HM, funding); findings (economic impacts, impacts on caregiver injury/strain, other outcomes for caregivers and care recipients, and lessons learned); and recommendations provided by study authors, based on full-text review of the studies. To assess the strength of the evidence, we also extracted details on each study's design, sample, methods, and limitations. Two researchers reviewed each entry.
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Results
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Overall Search Results
We screened the 446 abstracts and titles resulting from the PubMed searches to identify potentially relevant studies; 409 studies were excluded because they did not meet the inclusion criteria, and 37 were retrieved for closer evaluation (Figure A-1). Upon full-text review, 12 studies were determined not to meet the inclusion criteria, and the remaining 25 articles were included. Although the targeted website search provided some relevant background information, the targeted sites (listed in the 'Methods' section) did not yield any studies that met the inclusion criteria for this study. Twenty-seven relevant studies were identified through other sources (e.g., reference lists of included studies, conference presentations, suggestions from the TEP and CAP), for a total of 52 included articles.
To rate the strength of the evidence provided by each study, we used an adapted version of Moore, McQuay, and Gray's (1995) five-tiered model for rating research design strength (Table A-2). None of the studies achieved the highest level of design: a systematic review of multiple randomized controlled trials. Overall, 17 of the studies were randomized control trials, six were quasi-experiments with a comparison group, 18 used a single group pre/post-design, five were non-experimental (e.g., retrospective studies), and six used qualitative methodologies. To assess the generalizability of the studies, we also examined the participants and settings represented in each study.
Data were not comparable across studies because the included studies varied in design, methods, intervention, study population and setting. Many of the studies focused on interventions targeting workers in nursing facilities and hospitals (21 studies); no relevant studies focused on assisted living. Most of the studies involved a small number of participants and facilities, often limited to a single facility. The research involving the home care workforce was quite limited (four studies). The Centers for Disease Control and Prevention's (CDC) NIOSH (2009) recently recognized this research gap of limited studies addressing AT to reduce physical strain for home care workers, noting "a particular need to address musculoskeletal disorders (MSDs) in the home health setting where interventions such as lifting equipment are generally unavailable." Another noted research gap in the home care field is how to overcome barriers to implementation of equipment and safe handling practices that have been found to be effective (NIOSH, 2009). Sixteen studies focused on AT/HM to promote independence of older adults with disabilities living at home, of which ten were randomized controlled trials. Eleven studies involved family caregivers or the care receiver/family caregiver dyad.
Evidence from Studies with Caregiving Staff in Facilities
Of the 21 studies based in nursing homes and hospitals, 12 focused on the effects of specific technologies and training (Table A-3) such as mechanical lifting devices. Although data are not comparable across studies due to differences in the interventions, study design, outcome measures, and time period examined, a common finding was that many devices lessened physical strain and decreased worker injuries.
In studies incorporating feedback from caregiving staff, the caregivers reported reductions in perceived physical strain. This was measured in terms of perceived exertion (Owen, Keene, & Olson, 2002); perceived risk of injury/discomfort and ease of lifting patients (Engst, Chhokar, Miller, Tate, & Yassi, 2005); perceived force used (Engst, Chhokar, Robinson, Earthy, & Yassi, 2004); perceived physical stress (Owen & Garg, 1994); perceptions of fatigue, comfort with tasks, and safety (Yassi et al., 2001); and reported comfort and ease of using the devices (Hunter, Branson, & Davenport, 2010).
Several studies using quasi-experimental designs found that assistive devices reduced worker injuries, particularly back injuries and musculoskeletal injures (MSIs). Several studies also reported fewer workdays lost as a result of the reductions in injuries (Owen, Keene, & Olsen, 2002; Engst et al., 2004; Alamgir et al., 2008; Chhokar, Engst, Miller, Robinson, & Tate, 2005; Li, Wolf, & Evanoff 2004; Park, Bushnell, Bailer, Collins, & Strayner, 2009). All of the studies examining cost impacts reported savings when AT was consistently used, due to reduced workers' compensation claims costs (Chhokar et al., 2005; Li, Wolf, & Evanoff, 2004; Park et al., 2009). Engst et al. (2005) found a 68% decrease in compensation costs related to transferring and lifting injuries, but a 53% increase in costs related to re-positioning injuries, which may have been because the caregivers were less likely to use AT for re-positioning patients. In several of the studies that examined long-term impacts, direct cost savings were not fully realized until a few years after program inception (Chhokar et al., 2005; Alamgir et al., 2008, Engst et al., 2005).
A few studies identified problems with the design of some commonly used devices, in particular sliding sheets, causing these devices to be ineffective at reducing caregiver physical strain. In a survey of over 1,000 nurses in two states, Trinkoff, Brady, and Nielsen (2003) found that the availability of lifting teams and lifting devices were associated with lower odds of MSD, but transfer boards/sliding sheets and adjustable beds were associated with higher odds of back MSD for those who use the devices. Consistent with these findings, a study by Baptiste, Boda, Nelson, Lloyd, and Lee (2006) found that caregivers preferred the air-assisted devices; caregivers ranked the draw sheet last in comfort, ease of use, perceived injury risk, time efficiency, and patient safety. The study noted that this is important because the draw sheets were one of the most commonly used transferring devices in caregiving institutions.
Nine studies evaluated more comprehensive multi-component injury prevention programs in nursing homes or hospitals (Table A-4). In addition to providing assistive equipment and training, common components of these programs also included: assessment of the need for AT devices through observations or interviews with caregiving staff (Hunter, Branson, & Davenport, 2010; Lynch & Freund, 2000; Owen & Garg, 1994); having patient-handling staff test equipment before purchase/installation (Charney, Simmons, Lary, & Metz, 2006; Engkvist, 2006); involvement of caregiving staff beyond intervention participant role (Brophy, Achimore, & Moore-Dawson, 2001; Nelson et al., 2006); and a more involved approach to handling workers who were injured (Collins, Wolf, Bell, & Evanoff, 2004; Morgan & Chow, 2007). Many of the interventions discussed in these studies also adopted a "no" or "zero lift" policy (i.e., requiring use of assistive devices and prohibiting or minimizing manual assistance).
Most of the studies examining multi-component ergonomic interventions found evidence of significant decreases in workplace injuries. A randomized controlled trial to test the effect of various patient-handling devices did not find a statistically significant change in injury rates over the one-year period of the intervention, although it did find other positive outcomes (Yassi et al., 2001). In a randomized controlled trial corresponding with the Yassi (2001) study, the new AT had mixed effects on different types of physical strain: it reduced peak spinal loading for several patient-handling tasks, but increased cumulative spinal loading, which could present problems for caregivers over the long term (Danyard et al., 2001). In a one-year back injury prevention program, Lynch and Fruend (2000) found that the number of back injuries after implementation of the program was 30% lower than during the prior three years' average. Engkvist (2006) analyzed the effects of a No Lift System (NLS), and found that, in comparison to nurses at two hospitals without the NLS, nurses at the NLS hospital reported fewer injuries, less pain/symptoms, less absence from work due to musculoskeletal pain/symptoms, and less physical tiredness.
Over half of the multi-component facility intervention studies reported economic outcomes and all of these studies found evidence of significant savings due to reduced workers' compensation claims (Hunter, Branson, & Davenport, 2010; Morgan & Chow, 2007; Charney et al., 2006; Nelson et al., 2006; Brophy, Achimore, & Moore-Dawson, 2001; Collins et al., 2004). Nelson et al. (2006) also reported improvements in job satisfaction.
These studies also reported positive results for care recipients. Charney et al. (2006) reported that patients received fewer injuries, like skin tears or falls, when using various AT equipment. In Owen, Keene, and Olson (2002), surveyed patients at an intervention site felt more comfortable and secure being transferred using assistive devices. Similarly, in another study residents at a nursing home felt more comfortable and secure being weighed using a hoist or a wheelchair ramp, in comparison to the manual transfer from wheelchair to scale (Owen & Garg, 1994). Engst et al. (2004) found that patients were less agitated being transferred from bed to toilet using AT, in comparison to the manual transfer or being cleaned in bed. A decrease in agitation was also noted in Collins et al.'s (2004) study, in which violent physical acts by patients decreased upon implementation of a safe patient-handling program. Hunter, Branson, and Davenport (2010) found that patients provided positive feedback about the lifting equipment.
In a few studies, a major barrier to implementing AT such as ceiling lifts or stand-up lifts was the amount of time that it took for caregiving staff to use (Engst et al., 2005; Engst et al., 2004; Li, Wolf, & Evanoff, 2004). Other concerns were that staff felt their jobs were more hectic and were more worried about making mistakes when using assistive devices (Engst et al., 2005), which the authors potentially attribute to the increased training and time needed to use the devices.
Other studies identified barriers related to the facility culture or management practices. Khatutsky, Wiener, and Anderson (2010), using national data sets, found no evidence that lifting device availability reduced the probability of being injured. However, mandatory overtime, poor training, being a new worker, and not having enough time to provide activity of daily living (ADL) help did increase the probability of being injured. In the study by Hunter, Branson, and Davenport (2010), the purpose of the three-year program was to instill a culture change in the institution; however, one of the challenges the program ran into was staff resistance to this change from current practices.
Evidence from Studies with Home Care Workers
Four studies (Table A-5) found that reductions in physical strain for home care workers who used AT, including redesigned clothing for persons in wheelchairs (Nevala, Holopainen, Kinnunen, & Hanninen, 2003) and injury prevention programs involving back-belts (also called back braces) (Kraus, Schaffer, Rice, Maroosis, & Harper, 2002; Leff, Habenback, & Marn, 2000). In the Leff, Habenback, and Marn (2000) study, injury reductions were not realized until about a year into the program, suggesting that persistent use of multiple interventions over time may be needed. Craib, Hackett, Back, and Cvitkovich (2007) found that, although the group receiving interventions including education and access to a lift registry experienced fewer time-loss injuries, reporting of injuries was higher. The authors suggested that this may be because the intervention increased workers' ability to recognize injuries and awareness of how to report them. A limitation of this research is that these studies were conducted with small samples in a single agency.
A 2008 review of the literature on the effectiveness of lumbar supports (not specific to caregivers) found a need for additional research, including randomized controlled trials, to determine their effectiveness for preventing low-back pain (van Duijenbode, Jellema, va Poppel, & Tulder, 2011).
Another finding from the studies on home care workers is that some groups of these workers were more at risk of injury than others. Workers at greater risk for new lower back injury included those with a greater body mass index, those with back problems at entry into the study, and those with a history of back injury (Kraus et al., 2002), as well as full-time workers and those with less than college education (Craib et al., 2007).
Evidence from Studies with Older Adults with Disability Living at Home
All of the studies of AT/HM interventions targeting adults with disabilities living at home found positive effects, primarily enhanced independence (Table A-6). In the Massachusetts low-cost AT demonstration, 90% of clients reported satisfaction with the low-cost devices, 60% found them to be "very helpful," and 70% used them regularly. Petersson, Lilja, Hammel, and Kottorp (2008) found that older adults with disabilities in Sweden who received HM significantly improved in self-reported independence and safety with toileting tasks and transferring tasks such as getting in and out of the home. In a randomized controlled trial study by Mann, Ottenbacher, Fraas, Tomita, and Granger (1999), participants who received a functional assessment, a home environment evaluation, and AT/HM based on their evaluation results experienced less functional decline than the control group. Participants also incurred less expenditures for nurse and case management visits. Liu and Lapane (2009), analyzing data from the Second Longitudinal Study on Aging, found that HM (like railings or bathroom modifications) were associated with reduced risk of decline among community-dwelling adults aged 70 and older. Stark, Landsbaum, Palmer, Somerville, and Morris (2009) found that adults in a suburban naturally occurring retirement community (NORC) improved significantly in their subjective ratings of their daily activity performance after receiving a HM. The improvement was maintained for two years.
In a non-randomized, single group pre/post study, Horowitz, Brennan, Reinhardt, and MacMillan (2006) reviewed the effects of optical and adaptive devices on disability and depression among older adults who had acquired a recent vision impairment and who were applying for vision rehabilitation services. They interviewed the sample (n=138) at pre-service and at 5-month follow-up. Participants were asked about their use of optical devices (including magnifier, telescope, special sunglasses, or other) and adaptive aids related to vision loss (large-print telephone dials, handwriting guides, talking books, other talking items, large-print reading materials, long white cane for mobility, or other aids). Researchers found that use of optical devices was significantly associated with declines in functional disability and depressive symptoms over time. These results were not found with adaptive devices.
Wilson, Mitchell, Kemp, Adkins, and Mann (2009) conducted a randomized controlled study to examine an AT/HM intervention's impact on functional decline of aging individuals with a disability. The study involved 91 participants with a variety of impairments. The intervention group received an evaluation of their home and potential AT/HM needs, which the study provided, paying part or all of the cost. The AT included a variety of devices, such as grab bars and bath benches. HM included ramps, widening doorways, and lighting/electrical changes. The intervention also included adaptive behaviors or changes in task performance to help reduce strain. The control group received health care already available through community resources. Outcomes were tracked through in-home interviews using the Older Americans Resources and Services Instrument (OARS) and the Functional Independence Measure (FIM). Analysis showed slower decline in function in the treatment group over the two-year intervention period. Additionally, that group was found to be more likely to use AT instead of personal assistance to maintain their independence.
Several studies with older adults living at home examined multi-component programs with an OT component for adults with a disability living at home and found positive outcomes. Participants in the Advancing Better Living for Elders (ABLE) program (Gitlin et al., 2006; Rose, Gitlin, & Dennis, 2010), an ongoing clinical trial begun by the National Institutes of Health (NIH) in 2005, experienced less difficulty with ADLs and instrumental activities of daily living (IADLs). ABLE provides five OT visits, a PT visit, and identification and installation of appropriate HM for adults age 70 and older (Gitlin et al., 2006). Average costs per ABLE participant were $439 for equipment and HM and $783 for therapy, for a total of $1,222. Researchers recommended that HMs be reimbursable through Medicare, which is not part of current policy (Gitlin et al., 2006).
Building on the ABLE demonstration, the Community Aging in Place, Advancing Better Living for Elders (CAPABLE) pilot is comprised of the ABLE program, a person-centered nurse intervention, and home safety/modification handyman services (Szanton et al., 2010). The program aims to enhance low-income older adults' ability to age in place and improve the functionality of their homes and was described as: "Each service synergistically builds on the others by increasing the participants' bio-psycho-environmental capacity to function at home." The pilot was theorized to avert costly health utilization by increasing medication management, problem-solving ability, strength, balance, nutrition, and home safety, while decreasing depression and risk of falls. Szanton et al. (2011) performed a prospective randomized controlled pilot trial of the CAPABLE pilot with 40 low-income older adults with one or more ADL difficulties or two or more IADL difficulties in the Baltimore, Maryland area. The intervention group (n=24) received up to six OT visits, up to four nurse visits, and handyman repairs and modifications costing an average of $1,300. The control group (n=16) received the same number of visits, but with a trained research assistant who was not an OT or a registered nurse (RN) and participated in sedentary activities of their choice (like scrapbooking). The OT assessed the home for HM needs, coordinated with the handyman to install the HM, and trained the individual using the HMs, which included grab bars, rails, and raised toilet seats. Nearly all (94%) of the intervention group stated that CAPABLE made their lives easier, compared to 53% of the control group. Szanton et al. (2011) noted that the intervention making their lives easier is theoretically connected to a decrease of functional difficulties. They suggest that future research review the potential effects on long-term outcomes, including nursing home admissions.
Similarly, in the Howard County/Montgomery County (Maryland) Aging in Place/Better Living at Home program OTs, SWs, community health nurses, and older adults collaborate to facilitate independence and aging in place for older adults, using AT/HM (Sheffield, 2011). The OT provides a comprehensive person-centered evaluation of the home, including the physical, psychological, social, and financial strengths and needs of the client. The OT works with the person to prioritize needs and develop appropriate solutions, such as developing emergency response plans, removing environmental hazards, providing adaptive equipment and training in adaptive equipment, and providing education in adaptive strategies for daily activities. The retrofit specialist provides logistical support to implement the identified solutions. Existing community resources and funding sources are used to pay for AT/HM when possible. Frequently prescribed equipment included hand-held shower holders, reachers, tub benches, tub mats, raised toilet seats, grab bars, bedrails, night lights furniture risers, and pill dispensers. Results of a randomized trial indicated that the intervention reduced hours of paid weekly assistance by 43% and cost less than $1,000 per person served (Sheffield, 2011). On average, $150 was spent on equipment for the participants, with the rest of the money going to the OT/SW assessment. The estimated one-year savings per client was $3,133 in Howard County and $4,631 in Montgomery County. The estimated program savings, then, was approximately $7,000 for every $1,000 spent on the intervention. Using funds saved from reduced service needs, the program has expanded to serve more people. This intervention improved functional independence and safety, decreased fear of falling, and showed an increase in quality of life (Becker, 2011).
In the Assistive Technology Long-term Advocacy and Support (ATLAS) intervention, aging individuals with intellectual disabilities and their social support network worked with an OT for four sessions to identify and problem-solve issues through environmental strategies, including AT/HM, using a consumer-directed, collaborative approach (Mirza & Hammel, 2009). The intervention was theoretically based on the Competence-Environmental Press Framework that was applied and adapted by Gitlin. Consistent with findings from similar interventions reported above, ATLAS was associated with higher levels of performance and satisfaction.
The Increasing Stability through Evaluation and Practice (InSTEP) program, conducted by the Fall Prevention Center of Excellence (FPCE), also incorporates an OT component and home assessments (FPCE, 2011). The FPCE is a consortium of the University of Southern California Leonard Davis School of Gerontology; the Veterans Administration Greater Los Angeles Healthcare System Geriatric Research, Education, and Clinical Center; California State University Fullerton's Center for Successful Aging; the California Department of Public Health State and Local Injury Control; and the University of California, Los Angeles School of Medicine. InSTEP, which is offered through community centers, includes an exercise program and assessment of medical and home risks for older adults at risk for falls. The program includes three models, with the high-intensity model including a home evaluation and follow-up by an occupational therapist whoprovides referrals for HM. The InSTEP program is currently being tested, but preliminary data indicate improvements in balance and mobility and improved understanding of risk factors associated with falls.
A case study of Lutheran Homes of Michigan suggests that telehealth devices can help reduce hospital readmissions among older adults (Gehm, 2011). In exploring ways to help older adults remain in their homes, the organization established the Aging Enriched Network, a one-stop model for information and referral to a wide range of services that older adults need to stay at home, including home health care and telehealth and monitoring systems. The services are offered by Lutheran Homes or pre-screened providers. It also features a call center and a shared electronic health referral and record exchange program. The organization receives discharge notices from the local hospital and it connects older adults to home care or subacute care services. In a small study of the telehealth program, 12 of the 15 people who were discharged from the hospital without a telehealth device experienced a readmission or an unexpected revisit to a physician, compared to one or two of the 18 members of the telehealth group.
A few studies examined factors related to the readiness of older adults with disabilities to use AT/HM. In the ABLE study, higher readiness to use technology was associated with: younger age, African Americans with financial difficulties, use of active-oriented compensatory strategies, use of cognitive oriented strategies, and less depression (Rose, Gitlin, & Dennis, 2010). The strongest predictor of change in readiness to utilize compensatory strategies was social support.
Program capacity to provide AT/HM to older adults was another major issue noted in the literature. In the Howard County program, challenges included funding for therapists, equipment, and modifications, and using existing staff resources (Becker-Omvig & Smith, 2010). The Howard County program was able to overcome initial resistance from clients and staff through "logical arguments, emotional arguments, building trust, and concrete reality," as well as enlisting champions and showing efficacy (Becker-Omvig & Smith, 2010).
The Massachusetts demonstration highlighted several challenges related to program capacity, including that CMs need consistent training on the benefits and uses of AT (Gottlieb & Caro, 2001). The authors recommended that an expert on AT equipment be hired, that CMs allocate time for tasks related to AT, and that agencies develop systems to order and deliver equipment to clients and allocate funds for AT.
Demiris, Oliver, Dickey, Skubic, and Rantz (2008) evaluated the implementation of a "smart home" project in the apartments of nine residents of an independent retirement facility through qualitative interviews and observational sessions. This included an In-Home Monitoring System (IMS) which had a set of wireless infrared proximity sensors to detect motion and pressure switch pads. The IMS also included a stove sensor, a cabinet sensor, and a bed sensor. They identified three phases of adoption and acceptance of the sensors: (1) familiarization; (2) adjustment and curiosity; and (3) full integration. The residents reacted positively to the sensor technologies and did not feel that these interrupted their daily activities. Additionally, the residents did not express privacy concerns.
Mann, Marchant, Tomita, Fraas, and Stanton (2002) examined older adults' receptivity to home telehealth care, which they defined as the provision of health care evaluation, medical advice, and the delivery of services to the home through the use of telecommunication technologies, including information, communications, and monitoring technologies. The researchers used the Rehabilitation Engineering Research Center on Aging Consumer Assessments Study (CAS). They developed the "Home Care Monitoring Devices" questionnaire to gauge frail older adults' receptivity to devices including a thermometer, metered dosage inhaler, blood pressure monitor, blood glucose monitor, and medication compliance monitor. Results indicated that the sample strongly accepted the concept of home health monitoring and the different devices. One of the determining factors of perceived intrusiveness of these devices was equipment characteristics. An analysis of subjective comments found that participants thought these devices would be useful for others, but not necessarily for their own personal use.
Anemaet and Trotter (1999) reviewed the literature on home assessments and their effects on the safety and functional independence of older adults living at home. They made the case for home assessments being the first step in ensuring proper AT/HM are brought into the home. The authors described some of the considerations home care providers face in using a home assessment tool:
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Comprehensive -- covers pertinent details.
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Format and Time ease of use.
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Guidance step-by-step.
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Objectivity some assessments allow for an objective scoring of home safety.
Anemaet and Trotter (1999) suggest that home care providers use home assessment tools3 that include:
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Safe at Home (Securing a Functional Environment with the Anemaet-Trotter Home Observation and Modification Evaluation). This comes in an objective form, which uses ordinal scales, as well as in a descriptive form, which does not use a scoring mechanism but is similar to the objective form.
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The Functional Environmental Assessment. This tool takes the assessor through potential hazards in the home that can be scored based on the care recipient's difficulty with those hazards.
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Home Safety Checklist. This was developed by the U.S. Product Safety Commission. This assessment tool lists the potential hazards in the home and providers' recommendations for addressing those hazards.
Evidence from Studies with Family Caregivers and Dyads
Several demonstration studies tested programs to provide OT services and AT/HM to family caregivers of older adults with dementia or the family caregiver dyad (Table A-7).All found positive effects for caregivers, such as reduced burden and reduced hours spent caregiving, although none of the studies directly measured impacts on caregiver physical strain. Most of the studies focused on caregivers of people with Alzheimer's, but the findings are relevant to all caregivers.
Buettner, Yu and Burgener (2010) conducted a systematic literature review of studies with rigorous research methods related to the effects of technology-based interventions for people with early-stage Alzheimer's disease. Their search yielded ten studies, only one of which focused on the effects for caregivers. That study tested the SAFE House System (Kinney, Kart, Murdoch, & Conley, 2004), which consists of a camera and sensors routed through a controlled unit to a website that is accessed with a broadband-connected computer. Caregivers are alerted through text messages from the website if any potentially unsafe activity is detected. Some of the positive benefits of the system included peace of mind for the caregivers; however, 50% of the caregivers surveyed felt that the system made their lives more difficult because of the technological burden.
NIH established the Resources for Enhancing Alzheimer's Caregiver Health (REACH) Initiative in 1995 to research interventions to support family caregivers of people with Alzheimer's disease and related disorders (Gitlin et al., 2003; Gitlin, Hauck, Dennis, & Winter, 2005; Girlin & Greening, 1997). REACH included an Environmental Skill-Building Program (ESP), which provided family caregivers with education about the disease and strategies for modifying the home to help solve problems with care recipient behaviors. Education was provided through visits with OTs who also provided problem-solving training and adaptive equipment. Caregivers participating in REACH reported being less upset with memory-related behaviors, less need for assistance, better affect, and tended to maintain skills at 12 months. Upon demonstrating that this program was successful in reducing caregiver burden and enhancing caregiver skills in managing care recipients, a recent two-year translational project was conducted by Gitlin, Jacobs, and Earland (2010) to examine the translation of the ESP for home care delivery as a reimbursable Medicare Part B Service. Caregivers received ESP training for patient therapeutic needs, as defined under Medicare Part B Service. Caregivers reported a large increase in knowledge and skills for understanding topics like dementia and home safety. A majority reported enhanced ability to care for and manage the care recipient and enhanced self-care. The translational project for funding the ESP program through Medicare Part B presents a potential future for home caregiver interventions (Gitlin, Jacobs, & Earland, 2010).
REACH VA, part of the REACH II intervention sponsored by the National Institute on Aging and the National Institute on Nursing Research, served stressed caregivers of people with Alzheimer's or related dementia from 24 Veterans' Medical Centers in 15 states (Nichols, Martindale-Adams, Burns, Graney, & Zuber, 2011). Findings at 6 months from the REACH VA initiative found that problematic behaviors of care recipients with dementia decreased (Goy, Freeman, & Kansagara, 2010). Follow-up for REACH VA found that caregiver burden and depression decreased, as did time spent caregiving (Goy, Freeman, & Kansagara, 2010). In addition, early findings from the REACH VA showed declines in inpatient, pharmacy, and outpatient costs (Nichols et al., 2011).
Gitlin, Winter, and Dennis (2010) studied 272 caregiver-patient dyads, with 136 randomized to the intervention group. The implemented intervention was Advancing Caregiver Training (ACT); this included up to eight OT sessions and two nursing sessions. This was followed by a 16-24 week maintenance phase, which included three brief OT contacts through telephone. The OT assessed the need for and willingness of the caregiver to use adaptive equipment, which was purchased and paid for through grant funding. These included devices to help with IADLs (mobility, seating, medication taking, transfers), ADLs (eating, toileting), and safety (monitoring devices). Sixty-three dyads received assistive devices, with an average of three devices per dyad. The average cost was $152.52 for ordering, delivering, and installing the equipment. At 4 months, 87.6% of devices ordered were reported as being in use and ranged from somewhat to very helpful. The most popular/needed devices were for activity engagement (e.g., games, puzzles), followed by bathroom/toileting challenges. The latter included grab bars, raised toilet seats, and tub benches. The least issued devices were for ambulation and transferring, which were also the most expensive. This study demonstrates the effectiveness of small, low-cost AT in helping to reduce caregiver burden, with bathing and toileting devices among those most commonly needed. The reported device use rate (87.6%) was high and Gitlin, Winter, and Dennis (2010) report this may have been due to the client-centered approach in the intervention, which included working with the caregiver to identify the problematic behaviors. AT was provided only when approved by the caregiver. Gitlin, Winter, and Dennis (2010) suggest that caregivers need education on the range of assistive devices and where they can obtain them, exposure to the potential benefits of the assistive devices, and training on how to use them.
A randomized controlled trial by Schulz et al. (2009) tested a program for family caregivers of people aged 35 and older with spinal cord injury (SCI). Although they did not receive AT or HM, the caregivers received in-home and telephone-based sessions to improve their knowledge about how to reduce environmental stress, in addition to how to reduce personal stress and improve health and self-care, access to support, and emotional well-being. A dyad intervention provided the same elements (like improving their own emotional/physical well-being) to care recipients and also taught care recipients ways they could help reduce caregiver burden. The intervention targeting the dyad improved quality of life of the dyad, measured by depressive symptoms, burden, social support and integration, as well as self-care problems and physical health symptoms. No significant effects were obtained for the caregiver-only intervention, raising questions about the efficacy of this approach.
Several studies examined issues affecting the successful dissemination of AT/HM to caregivers. Carswell et al. (2009) reviewed the literature related to AT solutions for people with Alzheimer's disease and examined how those solutions could relate to problems faced by the population at night. Four of the articles were night-specific and related to monitoring and guidance. They did not relate to caregiver physical strain. Fourteen papers related to both night and day AT solutions. These also did not relate to caregiver physical strain, but some of the AT related to alleviating caregiver mental or emotional strain through calming the care receiver and alleviating verbal aggression and agitation. Technologies examined in this literature included "Smart Homes" to better monitor people with Alzheimer's disease, intelligent sensors that could be used for monitoring or as an alarm system, grab bars, bathtubs, and showers. One of the researchers' suggestions for persons with Alzheimer's disease using AT is to ensure user-centered design and acceptance. They stressed the importance of involving stakeholders in all aspects of assessing for and deciding on AT for the home; this helps increase their acceptance of the AT.
As part of an ongoing randomized controlled trial of Maximizing Independence Phase 2, Marquardt et al. (2011) reviewed the barriers to implementing suggested HMs for people with dementia. An architect assessed the home environments of 82 community-dwelling elderly individuals in North/Northwest Baltimore. The assessments included observation, a house plan sketch, and a caregiver questionnaire. Results showed that the entrance and interior stairs were a major obstacle in the homes of study participants, with many lacking safety railings. Bathroom safety was also an identified obstacle, with 57% of the study already having grab bars installed and almost 50% having modifications like a walk-in shower, hand-held showerhead, or a shower seat. Caregivers' reasoning for modifying the home included the care receiver's physical limitations, most commonly for bathroom safety. Another primary reason was the care receiver's memory loss; these modifications include additional lights, signs, and labels.
Messecar (2000) interviewed 24 primary family caregivers to determine the factors affecting the caregivers' ability to implement home environmental modifications. Environmental modifications were defined as "actions taken to organize the home, protect the elderly individual, structure the elderly individual's day, supplement the elderly individual's function with devices and environmental cues, work around the limitations of the environment to provide care, and make the home more pleasing." Factors identified as affecting the caregivers' ability to implement modifications included attributes of the elderly individual, attributes of the modification, quality of the caregiver-elderly relationship, caregivers' skills, personal resources of the caregiver, and the informal and formal supports available. Messecar provides a list of recommended interventions to help strengthen the caregiver's ability to use environmental modifications, including performing an environmental and functional assessment. They also recommended researching and acquiring modifications tailored to the individual older adult, as well as communicating with the care receiver about potential modifications and supplemental existing resources.
In the Marquardt et al. (2011) study, the caregiver's physical strain was not listed as a reason for adding modifications. However, some reasons for not accepting suggested modifications include the price and care recipient acceptance.
A recent online survey examined predictors of family caregivers' receptivity to using various types of AT, defined broadly as including training/mentoring services (National Alliance for Caregiving (NAC), 2011). Overall, caregivers were most receptive to technologies related to delivering, monitoring, tracking, or coordinating the care recipient's medical care. More highly burdened caregivers were more likely to find the following AT potentially helpful: an interactive system for physical, mental, and leisure activities; a passive movement monitoring system; caregiver training simulations; caregiving coaching software; and a caregiver mentor matching service. The following groups of caregivers were more likely to express receptivity to technologies: caregivers under age 50, early adopters of technology4 (vs. late adopters), caregivers of minority race/ethnicity (African American, Hispanic, Asian American, or other) over the age of 50 (vs. European American caregivers over age 50). The most commonly reported obstacle was the belief that the technology would be expensive.
Another major factor affecting caregiver and care recipient receptivity to AT noted in the literature is the level of ease and comfort of using the device for caregivers and care recipients. Mann (2010) found that wheelchairs and lifts, the most frequently used devices for mobility, were both very problematic in a home setting. One of caregivers' main concerns was that transferring a person without a lift seemed easier than using a lift, due to potential and/or actual discomfort of the person being assisted when a lift was used. In addition, family caregivers noted that transferring a person manually was more efficient than using a lift: one caregiver stated that transferring a care recipient manually took 20 seconds, while using an electronic lift took four minutes. Similarly, in a study by Messecar (2002), family caregivers said that environmental modifications had a few negative outcomes, including that it increased their workload.
The National Research Council, Committee on the Role of Human Factors in Home Health Care (2011a) developed a guide to human factors design considerations for health information technology in the home, focusing on computer or sensory and surveillance technology. The authors posited that designers and developers need to consider all factors, including the person with the disability and care provider, the tasks, the equipment and technology, and the environment. A specific guideline was that "devices should require minimal force, repetitive action, and sustained physical effort for operation." They should also be customizable to accommodate differences in individuals' height, reach, and range of motion.
A companion book, Health Care Comes Home: The Human Factors (National Research Council, 2011b), recommended including care recipients and home caregivers in the testing of medical devices that may be used in the home in order to reduce risk and analyze the appropriateness of technologies for the home. The authors noted that devices designed for institutional use come with many enhancements that are not appropriate for the home and suggested that untrained users need devices to be as simple as possible. They suggested that designers develop two versions of devices, for untrained and professional users. A related consideration is assessing the home environment. Many homes are unique and not well-suited for the needs of an aging adult. Home assessments can help caregivers greatly through the introduction of simple AT/HM, like tub benches or grab bars. The authors stated that a good time for a home assessment is prior to hospital discharge, to facilitate a smoother transition to the home. Universal design, which is "intended to create residential settings that work for everyone regardless of size, age, or ability," avoids the needed costs for HM, like ramps and bathroom remodels.
The National Research Council (2011b) also discussed the need for effective caregiver training on the use of technology. Caregiver training effectiveness depends on the timing of the training (if it is a time of stress), the number of sessions (if only one session is provided), and the cultural appropriateness of the training. Because people learn differently, including through pictures, text, word, video, and one-on-one, the authors suggested that multiple training options for caregivers be considered.
Project CARES (Caregiver Adaptations to Reduce Environmental Stress), funded by AoA, was designed to increase NFCSP staff knowledge about AT/HM for family caregivers (Sabata, Liebig, & Pynoos, 2005). Training topics included the basis of HM and AT, analysis of major activities that cause physical burden and their relationship to the environment, identification of solutions to problems, identification of caregivers' needs related to the home environment, different types of caregivers, resource identification, making CARES a reality in a participant's community, and the development of a proposal for an activity that could be completed in six months. Many of the 20 staff participants reported that their agency gained new knowledge about HM and new ways to meet caregiver needs.
The ability of professionals to recognize family caregiver physical strain and be familiar with AT/HM is also addressed in the National Association of Social Workers' (NASW) Standards for Social Work, Practice with Family Caregivers of Older Adults (2010). The Standards note that SWs need to assist family caregivers in preserving their own health through helping them to modify their caregiving roles. The standards also note the need for SWs to know of resources available to caregivers, including respite care and AT, and to assess the household environment for HM needs and the family caregiver's capacity to fulfill their role as caregivers.
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Discussion
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AT/HM Interventions with Promise for Reducing Physical Strain among Family Caregivers
Lifting/transferring devices. The literature suggests a need for increased access to lifting and transferring devices to support caregiving in the home. The facility-based research has shown the effectiveness of mechanical aids for lifting and transferring combined with other interventions such as training in device use, collaborating with caregiving staff to assess the need for and select AT, and "zero lift" policies. Significant positive impacts were found on reduced caregiver injuries, resulting in fewer lost workdays and long-term cost savings, and increased feelings of comfort and safety for people receiving care. These studies also reported the dangers of increased caregiver injuries of lifting a non-weight-bearing person without a mechanical device.
In contrast, of the few studies with home workers, most focused on back-belts, and the research on the effectiveness of these devices has been mixed. NIOSH guidelines recommend that equipment such as a hoist or mechanical lift be used for a whole body lift of a non-weight-bearing person. Gait belts and slings can help position and provide back-up when assisting a partially weight-bearing person. They can also be used for maneuvering a non-weight-bearing person into a hoist sling.5 One pilot program in Canada (Craib et al., 2007) used a registry of loaner lifts as an affordable way to provide home care workers with access to ceiling lifts.
In the studies with older adults and family caregivers at home, lifting and transferring equipment was one of the least frequently needed types of AT/HM but were used by some families.
Small, low-cost AT/HM. In the home-based studies, many of the devices used were low-cost, such as hand-held showers, reachers, grab bars, nightlights, and tub mats. These studies highlight the importance of assisting older adults with proper assessment of the need for AT/HM and raising awareness and acceptance of new technologies. Older adult receptivity to using AT/HM was related to both characteristics of the device, such as intrusiveness, and characteristics of the older adult, such as social support. Also important was the capacity of service agencies to provide AT/HM to older adults, including CM/SW training on the benefits and uses of AT/HM as well as the time allocated for tasks related to these services. As with the studies with older adults, these studies demonstrated the effectiveness of small, low-cost devices. The most common HMs needed included enhancements to bathroom safety (grab bars, walk-in shower, hand-held showerhead, shower seat); modifications to address the older adult's memory loss, such as additional lights, signs, and labels; and devices for activity engagement.
Electronic technologies. Several studies reported on the usefulness of electronic technologies in the home, such as telehealth care and remote monitoring systems. However, in some cases the technological burden of the devices was a challenge for caregivers. Future research and development may lead to more user-friendly versions of these technologies.
Home assessments, training, and OT. Several experimental studies tested the benefits of providing older adults and/or family caregivers at home with OT interventions, including AT/HM. Benefits included less need for assistance, reduced caregiver burden, less time spent caregiving, decrease in caregiver depression, enhanced caregiver skills, enhanced caregiver ability to self-care, fewer problem behaviors of people with dementia, and reductions in health care costs.
A key element of these interventions is a person-centered approach, in which OTs assess the home and work with the older person to identify solutions to increase their capacity to age in place. The OTs also assisted in ordering the devices and arranging for installation, as well as provided training and conducted follow-up visits. All of these studies found positive results, including user satisfaction with the devices, reduced functional decline and improved functioning, reduced depression, reduced need for paid assistance, and lower expenditures for nurse and case management visits. Although this decreased need for assistance would likely reduce physical strain for caregivers, this was not directly measured in any of the studies.
Implications for Dissemination Efforts
The literature suggests important lessons for efforts to accelerate the dissemination of AT/HM among family caregivers of older adults living at home.
Many studies identified caregiver or older adult resistance to using new AT/HM as a challenge. This suggests a need for efforts to increase awareness and acceptance of AT/HM.
Additionally, studies with family caregivers highlight the importance of CM and SW knowledge of AT/HM for family caregivers. Also important is ensuring that CMs have sufficient time to allocate to AT/HM services. Another suggestion is that CMs use a comprehensive, easy to use, objective tool for assessing home safety and identifying AT/HM needs. Several such tools have been developed.
The perceived cost of the AT/HM was another major barrier to device acceptance. This suggests a need for increased coverage of AT/HM in health care programs, combined with outreach to increase awareness of existing funding sources.
Identified Research Gaps
This review also identified several research gaps that could be addressed in future studies. No studies were found that directly measured outcomes on family caregiver physical strain, and few studies involved home care workers. Additional research is needed to assess long-term impacts of various types of devices on different aspects of physical strain among family and paid caregivers in the home setting and their cost impacts. Also needed is additional research on how to overcome barriers to more widespread adoption of equipment and safe handling practices that have been found to be effective. Attributes of the device, such as ease, comfort of use, time required to use the device, and intrusiveness, were major factors associated with receptivity to AT/HM. Thus, further research is needed to develop technologies designed for use by older adults and their caregivers in the home.
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