2000 Conference Proceedings

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DISTRIBUTED EXPERTISE: REMOTE SUPPORT FOR DIRECT SERVICE PROVIDERS

C. Trepagnier*, L. Halstead*, T. Dang*, M. A. Schroeder**, & Michael J. Rosen*

*Rehabilitation Engineering Service, National Rehabilitation Hospital
Irving St., NW, Washington DC 20010

**School of Nursing, The Catholic University of America
Michigan Ave., NW, Washington DC 20064

Abstract:

This paper provides conceptual descriptions and progress to date for three projects in the NIDRR Rehabilitation Engineering Research Center (RERC) on Telerehabilitation. All of these activities involve making specialized expertise available from a distance in order to support the work and complement the knowledge of direct service providers. The service providers in these three diverse projects include job coaches in supported employment settings, women aged 50 and above providing care to a family member with stroke, and nurses or technicians assessing individuals with pressure ulcers. Specialist expertise is offered by, respectively, vocational counselors, nurses specializing in stroke rehabilitation, and wound teams typically consisting of a specialized nurse, a physical therapist, a physiatrist and a plastic surgeon. The CSUN presentation will focus on the human factors and technical challenges of these three implementations of a distributed expertise model.

The RERC on Telerehabilitation has as its primary mission the improvement of access to rehabilitative services for individuals living in rural, underserved areas. However, it is the investigators’ conviction that use of distance communication technology also has the potential to improve rehabilitative services for individuals in urban areas who may be isolated by their immobility, the absence of transportation infrastructure, and other social factors. The rationale for the projects summarized here would apply in either setting.

One model of telemedicine service delivery is the provision of expert consultation by a specialist working in a comprehensive medical center to a front-line practitioner who is in the physical presence of the person receiving care. This model may also be applied in telerehabilitation. The primary motivation for this model is to offer expert consultation, despite the intervening distance, to providers who are generalists or who lack the particular technical knowledge the expert can provide. In many settings, in particular rural communities, the alternative is to do without this expertise, or to get by with much less of it, since it can be obtained only if the specialist or the consumer travel an impractical distance.

In telerehabilitation, the on-site individual may be an aid (a job coach, for example) with much more responsibility than training, a generalist professional (e.g. a visiting nurse or therapist), a family member with no training at all but a wealth of knowledge of the patient, or a "technician" trained specifically to utilize telerehab technologies. For each of these situations, telesupport must be designed to take advantage of what the on-site individual knows and provide an effective partnership between remote expertise, on-site knowledge, and "smart tools".

Further, other than the telerehab technician, the on-site person typically has had little contact with distance technology and may be reluctant to learn it and make use of it. The distributed expertise model of telerehabilitation, then, involves not only technical challenges, but human factors issues as well.

Supported employment became an option for state vocational rehabilitation agencies in 1986 [Wehman & Revell, 1996]. Identification and development of appropriate jobs for clients with disabilities are constrained by the availability of personnel to provide support. Often the job development specialist must seek placements that are near each other geographically, so that a single job coach can provide the necessary support to more than one client, and a single vocational counselor can travel among several locations. This is particularly difficult in rural areas, where lower population density and lower concentrations of businesses mean that jobs for persons with disabilities may be separated by significant distances.

Choosing nearby test sites, for the present, provides this project with a convenient test bed for initial implementations of vocational telerehabilitation. Once two sites have been followed for six months, two new sites will be established which are at a greater distance from the National Rehabilitation Hospital (NRH) investigators. In order to avoid disruption to the providers and consumers involved, these next sites will be located close to RERC collaborators who can provide on-site technical support, if necessary, to complement the support at a distance that will be provided by investigators at NRH. After the first four case studies have been completed, subsequent sites will include rural locations. When data from the initial four sites has been analyzed, a larger-scale controlled study is planned to assess the effect of access to two-way video communication on the provision of vocational rehabilitation services to individuals with disabilities. Outcome measures will include cost, travel distance and time, and client job success descriptors.

The technology selected for this stage of the project is low-cost video telephones, which operate via POTS (Plain Old Telephone Systems), since regular telephone lines are available in most small businesses and in most rural areas. We are currently collaborating with the Rock Creek Foundation which provides vocational services to individuals with mental illness and/or developmental disabilities. A focus group was held with Rock Creek vocational personnel at all levels, in order to familiarize them with the technology, and give them the opportunity to think of ways they might make use of it [Trepagnier et al., 1999].

Case study: Rock Creek staff identified an individual who they feel may benefit from a videotelephone connection with his vocational counselor. This gentleman works as part of an enclave at a public library, with a job coach for the whole group. While he functions well most of the time, there are occasional crises. When these occur, the services of the vocational counselor are needed on an urgent basis, and the counselor travels to the site. Even after the difficulty is resolved, much time is consumed in meetings to review the situation and put in place measures aimed at reducing likelihood of recurrences. The crises also put this individual's employment at risk.

The plan for implementing video communication in this case is to provide a brief, regular connection to the vocational counselor, for all the enclave participants, so that all are comfortable with it and it is not misperceived as a reinforcement for challenging behavior. In the event a consumer, the job coach or the employer sees a problem developing, a call will be initiated to the counselor. It is hoped that this will make it possible to resolve problems before they become crises.

Rock Creek personnel are gathering baseline data on the frequency of crises and the time and travel costs that ensue. The job site is scheduled for installation of video telephones connecting the job coach and the consumer to vocational counselors at the Rock Creek Foundation within the month. The CSUN presentation will include videotelephone connection with vocational staff and, if they are willing, one or more consumers, to discuss their experience with live two-way video delivery of vocational services.

This project offers and example of a service delivery situation in which on-site knowledge of the particulars of the environment and the consumer’s needs require timely observation and teleconsultation from an expert at a service delivery hub. A five-point interaction is needed involving the worker, the job coach and the vocational counselor at minimum, but also the employer and co-workers as needed.

When patients receive care in the home, one of the most important members of the health care team is the family caregiver, 73% of whom are women [AARP, 1997]. How well patients do at home is, for the most part, related to how able family caregivers are in assisting patients in following therapeutic regimens. Nowhere is this more important than with stroke patients' rehabilitation, wherein the monitoring of blood pressure and range of motion activities are crucial to successful tertiary prevention. However, the literature is replete with the phenomena of caregiver "burnout" which may interfere with rehabilitation activities, and subsequently may lead to rehospitalization of the patient, as well as mental and physical health problems for the caregiver. The clinical literature suggests that telehealth technologies could, perhaps, provide support for caregivers and reduce burnout. But, would caregivers accept telehealth? The literature is remarkably silent on the acceptance of telehealth technologies, so the research team thought that it was incumbent to identify what sways caregivers to buy into this novel .

The study question in this project is what factors influence the willingness to use telehealth technologies in the home by older women who are caring for a family member who has had a stroke. The study employs a descriptive design, using a variation of Participatory Action Research with a population of (a) 40 women over 50 years of age who are caring for a family member who has had a stroke and is receiving home health services (b) eight telehealth nurses and (c) two telehealth engineers. Prevention – of another stroke and caregiver burnout – is the clinical theme of the project.

Methodology: The home health agency nurse sets up an appointment for the project's telehealth nurse to meet with caregiver in order to explain the study. If the caregiver is willing to be involved then she and the patient sign informed consent forms. The telehealth nurse and telehealth engineer also sign informed consent documents. At the next appointment the telenurse and engineer go to the home to set up equipment; do an environmental and job accommodation assessment; and administer Daly and Fredman's Function-based Scale to Assess Patient-Caregiver Dyad [1998]. During this appointment the telenurse and caregiver set up some mutually agreeable times to talk to one another via videovisit. Following the second visit, the nurse and engineer each complete an instrument looking at how he/she perceives this caregiver's readiness and willingness to use the technologies. Following this part of the procedure, the next five weeks is the timeframe wherein the telenurse and the caregiver are supposed to interact. The telenurse is to keep detailed notes regarding initiation and content of the caregiver-telenurse interactions. After all these data have been collected, they will be subjected to descriptive analysis.

If the team can discern what are the barriers to and enhancers of acceptance and utilization of telehealth technologies by caregivers, they can develop strategies to best present, package and teach this treatment modality. Before studying effectiveness of telehealth technologies in reducing caregiver burnout, identifying and overcoming barriers to acceptance is vital. In the end, this project contemplates a three-point combination of expertise by means of teleinteraction among the caregiver, the individual with a stroke, and the telenurse (who will typically also make physical visits).

Remote Assessment of Pressure Ulcers:

Pressure ulcers represent a major, lifelong health hazard for persons with spinal cord injury (SCI). This health risk is increased when an individual with SCI lives in a rural area with unavailable or inaccessible healthcare that does not include professionals knowledgeable in the prevention and treatment of common medical problems such as pressure ulcers [Burns et al, 1998]. The goals of this project are:

address this healthcare need by developing and testing a kit of innovative technology to assess pressure ulcers via telecommunication of images and other signals; train healthcare professionals to standardize their assessment and treatment recommendations of pressure ulcers both in the clinic and via teleimaging; define the needed skills and train the on-site "technicians" who will make use of the kit and interact with the hub expert; and compare ulcer-care decisions made from data obtained by direct assessment with those made from teleinteraction; and carry out an demonstration project with individuals with SCI who live in a rural area in Minnesota. We will assess and manage their ulcers using the expertise of health professionals, including plastic surgeons and skin care nurses, located at NRH and at Sister Kenny Institute in Minneapolis.

Our initial task was the development and testing of the "Optiscan Pressure Ulcer System" or OPUS. This system uses real-time video and store-and-forward digital imaging for face-to-face interaction and high quality photography of the complex contours of pressure sores – respectively. We have found the Vista Medical VEV MDÔ wound documentation software package to be well-suited to our needs and are using it as the documentation component for OPUS.

The next task was to select or develop a high resolution description and scoring method which would foster repeatable reliable characterization of ulcers when comparing direct and remote assessment methods. However, after testing various standardized paper and pencil tools, in particular the PSST (Pressure Sore Status Tool) [Bates-Jensen, 1995], two conclusions emerged. First, inter-rater reliability among the expert clinicians on the NRH wound team remained poor because of the subjectivity and excessive descriptive detail imposed by this instrument. Secondly, it became clear that the relevant outcome from an assessment was not a detailed description but a selection from among a very small set of treatment decisions. For these reasons, this pursuit was dropped.

Concurrent with our work on pressure ulcer evaluation, we developed an algorithm for arriving at treatment recommendations that takes into account information not only on the status of the wound but also other variables such as the patient's knowledge and behaviors concerning pressure ulcers and their etiology, the availability and status of various durable medical equipment, and psycho-social-vocational information relevant to the healing, prevention and maintenance of healthy skin.

Our next tasks will focus on the project goals of training healthcare professionals at NRH and at SKI and its rural affiliates in the use of OPUS and then testing their reliability and validity in the assessment and treatment of individuals with pressure ulcers. When this is completed, we will pursue the demonstration project in rural health centers in Minnesota as part of our effort to evaluate and promote the concept of "Distributed Expertise". A critical issue will be finding an effective and cost-effective sharing of knowledge among the trained on-site technician, "expert system" guidance embodied in procedural prompts from an on-site computer, and real-time consultation from the hub expert(s).

Discussion:

The use of telerehabilitation holds significant promise for people living far from centers of rehabilitative service, as well as for individuals with disabilities for whom travel is a hardship. In addition, the potential for making relevant expertise available where and when it is needed, with audio and video two-way communication, may bring major benefit beyond current standards of practice, since specialty expertise can be made available at the site where the consumer is living or working, at the time difficulties arise, or even in advance of the escalation of difficulties. In order for this potential to be realized, the direct care providers have to be comfortable with the technology, have to have confidence in it, and have to be competent in its use. This is a human factors and training problem. Equipment must be designed/selected that is useable by a diverse range of individuals, not just professional technically sophisticated people without disabilities. A personal relationship with the provider of service is helpful, and may be necessary, whether it is with the engineer who installs the system and provides technical support, or the physician who will be viewing pressure sores by video.

This issue can be seen in the larger framework of the division of our society into technological 'haves' and 'have-nots'. Individuals who see themselves, for economic, cultural or other reasons, as part of the 'have-nots' will be unwilling to use the technology, and will thereby be excluded from its benefits. The success of telerehabilitation depends on a broad effort to make technology available and accessible, in every sense, to all citizens.

References:

AARP. (1997). A profile of older Americans. Washington, DC:AARP Resource Service Group.

Daly, M.P. & Fredman, L. (1998). A simple function-based scale for practitioners to assess the patient-caregiver dyad. Topics in Geriatric Rehabilitation, 14 (1): 45-53.

Bates-Jensen, B. (1995). Indices to Include in Wound Healing Assessment. Advances in Wound Care, 8(4): 28-25 to 28-31.

Trepagnier, C., Noiseux, J., & Glenshaw, M. (1999). Video communication for vocational support (Abstract). Proceedings of the First Joint Meeting of BMES & EMBS, 115.

Wehman, P., Revell, W. G. (1996). Supported employment from 1986 to 1993: A national program that works. Focus on Autism and Other Developmental Disabilities, 11(4): 235-242.

Burns, R., Crislip, D., Daviou, P., Temkin, A., Vesmarovich, S., Anshutz, J., Furbish, C., and Jones, M. (1998). Using Telerehabilitation to Support Assistive Technology. Assistive Technology, 10:126-133.

Acknowledgments:

This is a publication of the Rehabilitation Engineering Research Center on Telerehabilitation, which is funded by the National Institute on Disability and Rehabilitation Research of the U.S. Department of Education under grant # H133E980025. The opinions contained in this publication are those of the grantee and do not necessarily reflect those of the Department of Education.

We would like to thank Mr. Ray Salzberg, Mr. David Wachter and staff and consumers at the Rock Creek Foundation for their invaluable contributions. We also wish to thank Ms. Margaret Hadley from Holy Cross Home Care . We further acknowledge the vital contributions of plastic surgeon Dr. Raphael Convit of the NRH wound clinic.


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