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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