Hello everyone, my name is Adegboyega Akinsiku, I am a doctoral student at the University
of Maryland, Baltimore County, and I will present our paper "It's Not Just the Movement:
Experiential Information Needed for Stroke Telerehabilitation". In our paper, we share
findings from our ethnographically-informed field study that aimed to investigate what
aspects of movement data is essential in co-located stroke rehabilitation sessions,
with the ultimate goal of informing the design of future telerehabilitation systems.
Simply, telerehabilitation leverages technology, such as the internet, to facilitate the
communication of information between a patient and the rehabilitation specialist at a distance.
However, the type of information that needs to be communicated is not well defined.
The current design paradigm for stroke tele rehabilitation systems is predominantly focused
on collecting, measuring, quantifying, and conveying patient exercise movement data.
Our research was initially guided by the same focus and assumption. As we began to observe
face-to-face rehabilitation sessions and interview stroke rehabilitation specialists, we found that
the data and information they dedicated effort to extract and understand during rehabilitation
sessions, were incongruent to our initial focus and assumption. In other words, the current design
paradigm. We quickly challenged our assumption as our interviews and observations revealed that
although exercise movement data is an important component of stroke rehabilitation, it is not
the only information need for specialists. So we set out to study the additional information needs.
We found that experiential information is a key need in stroke rehabilitation. We define it as
information describing a stroke survivor's lived experience, collected through a patient-centered
approach, and used to inform the rehabilitation care plan. We also found that experiential
formation has four components. The first component is the stroke survivor's motivation, stress,
and frustration level. Specialists shared that these levels are top priority. 14 out
of 16 specialists found information describing a survivor's motivation, stress, and frustration
as more important than information describing activity repetition. These three are important
because they impact the ability for a stroke survivor to make progress on, and comply to,
a care plan. We observed a physiatrist even explain to a stroke survivor that stress can
actually make your side effects of stroke feel worse. Which takes us to our second component.
Specialists evaluate survivors physical, mental, and emotional health when prescribing
a rehabilitation plan, as all impact the ability for stroke survivors to complete the plan safely.
The third component, survivor's acclimation after a stroke and their rehabilitation goals.
An occupational therapist said, "Validating home exercise is a combination of objective
and subjective measures... I actually tell my patients to complete a weekly report for me."
These two aspects are tightly connected because the survivor's acclimation can inform the progress
made towards accomplishing a goal, and validating the two are not always as simple as tracking
movement. The fourth component, a caregiver's assessment. Many specialists consider the
rehabilitation process as a team effort within a stroke survivor's care network, and that network
includes a caregiver. We observed a number of stroke survivors come to rehabilitation sessions
with their caregiver. A physical therapist said, "A caregiver support is a major predictor in how
much someone can recover. Fortunately, they can offer support, encourage them,
help them overcome cognitive deficits, monitor their schedule, help with exercise, and cook
meals." The caregiver's day-to-day involvement with the stroke survivor produces key insight that
often becomes important experiential information. In summary, we found that the information needed
by rehabilitation specialists is not solely a detailed log of exercise movement data,
but rather experiential information that enables specialists to create a deeper understanding
of their patients lived experience, and for this reason we posit for a design paradigm
reconceptualization for stroke telerehabilitation systems. Simply, we propose including the four
components of experiential information into the design paradigm. This reconceptualization
brings telerehabilitation system design, closer to how co-located rehabilitation takes place,
by integrating components that reflect the patient-centered approach. I conclude by
offering design implications for the development of future stroke telerehabilitation systems.
First, for telerehabilitation systems to be congruent with existing co-located rehabilitation
practices, they need to provide ways to capture various forms of experiential information. Second,
solely capturing experiential information is not enough, systems should allow the information to be
annotated to better create a shared meaning among the multiple users of the system.
Finally, we believe that telerehabilitation systems have the potential to be the central
hub of information for a stroke survivor's care network, so systems should support Coordination.
Look for our work next year, as we are currently applying these design implications to a prototype
system. And we will like to thank you for your time, and we will also like to extend a special
thank you to the patients and the medical personnel that participated in our study.