Hi,
I am Tamanna Motahar
And I am presenting our research on identifying factors that
inhibit self-care behaviors of people with severe spinal cord injury.
This is work I did with Isha Ghosh and my
advisor Jason Wiese
at the University of Utah.
Take a moment to think about how long it has
been.
since you last stood up from your seat?
Common recommendations are to stand up and move around every 30 minutes,
Perhaps some of you even have a wearable
that reminds you to do this.
If you forget,
do you follow it?
Now
Consider that a person with a spinal cord.
Injury is in a wheelchair,
needs to change their sitting position for the pressure relief
Once every 20 minutes.
This is three times an hour or approximately 30 to 50 times
each day.
Imagine how hard it is to adhere to
this critical,
self-care Behavior.
This pressure reliefs are necessary to prevent the occurrence of
pressure ulcers,
which require medical treatment, can be painful and can even
be life threatening.
Pressure relief is one of many self-care activities
that people with severe
Spinal cord injuries
need to perform. Some self-care activities.
Need to be performed multiple times a week, others multiple times a day.
Finally,
that are some activities that need to be performed multiple
times an hour. Among all of these self-care activities, pressure relief is the most frequent self-care activity
and is the focus of this work.
Getting a pressure ulcer can be very serious.
Unfortunately.
It is very common for someone with a spinal cord
to develop a pressure ulcer,
more than 80% of patients develop
at least one pressure ulcer in their lifetime.
This is also a common cause of hospitalization and having
a pressure ulcer has negative impacts on quality of
life.
For instance,
individuals need to spend more time in bed and in
hospitals,
there's a risk of infection,
and there is a decreased possibility to return to work.
The good news is that pressure ulcers are preventable and
one way to help prevent them is by performing
pressure reliefs.
pressure relief involves regularly changing one's sitting position for
for a certain duration to reduce tissue load.
Manual wheelchair users perform pressure relief by leaning,
forward, backward,
or to the side. On the other hand,
Power wheelchair users, who typically have more severe motor impairment perform
pressure relief using the tilt function of the power wheelchair to shift
their tissue load
to their back.
In this study.
we explored power wheelchair users’ experiences in performing pressure relief
to help us understand how technology might be able to
support this high-frequency activity.
Our first research question focused the current pressure relief behaviors and experiences of
power wheelchair users.
We also explored some design considerations for technology
to support adherence to pressure relief guidelines.
Our study involved two phases: first we conducted
semi-structured interviews about participants’ pressure relief behavior.
We then presented nine storyboards with imaginary technological interventions to each participant
and solicited their reactions to each one.
We used prior literature to inform the scenarios we developed,
including ideas such as chairable form factors,
mobile interventions and feedback, collaborations with stakeholders and accessibility
in different contexts.
Here is an example scenario of a storyboard from our
study.
It says,
after finishing breakfast,
Bob was taking a rest alone while he was resting.
He felt a vibration on his arm rest,
Bob remembers that he has not done a pressure
relief for a long time,
Bob is thankful
for the reminder as he often forgets to do his
pressure reliefs without that vibration.
In each scenario,
we varied five dimensions that we integrated into the story:
Trigger, Modality, Interactivity, purpose and social setting.
for instance,
in the examples of scenario.
I just read it had an automatic trigger,
The modality was through vibration,
the interactivity was through a chairable form factor,
the purpose of the technology in this scenario was to provide a reminder and
the person in the storyboard was not around anyone else.
We recruited seven participants who were power wheelchair users from
the United States and Canada. Our participants’ spinal cord
Injuries had happened between 4 and 38 years earlier.
And all of them had experienced,
multiple pressure ulcers,
Participants also have multiple co-morbidities and a wide range of functional abilities
Some have the ability to use their hands; others primarily
relied on their head and mouth to control their power
wheelchair and other devices.
Despite having had pressure ulcers and being worried about future
Pressure ulcers,
participants all self-reported routinely missing pressure reliefs.
Primary reason for this is that they rely on their
they rely on their internal awareness of the time and feelings of pain to
remember when they should perform pressure relief.
Additionally,
they were not confident about what their ideal pressure relief
behaviour should be,
for instance,
participant two said that they should do a pressure
relief once every 15 minutes and participant 6 thought
that the ideal pressure relief frequency is once every four hours.
These perceptions of ideal pressure relief behavior vary dramatically from
each other.
Even when participants remember to do,
a pressure relief, they did not always perform one.
as there are other contextual factor at play.
For instance, using the tilt function of a power wheelchair
to perform a pressure relief requires sufficient space,
which can be difficult
in some settings. Furthermore,
as it is a highly visible health activity, participants reported sometimes feeling socially awkward to perform pressure
reliefs in settings
where it might be distracting or draw unwanted attention to
them.
In reaction to the speed dating scenarios we presented, participants strongly
favoured,
appropriate chairable interactions to smartphone-based ones--
chairable systems would be more convenient for them
in terms of control and reachability.
Participants also noted that a reminder for every pressure relief would
be burdensome because of the large number of pressure relief
they need to perform every day.
Rather,
they only wanted reminders for missed or
unfinished pressure reliefs.
Additionally, they wanted the reminders to be private,
reminder modes to be based on their physical abilities, and
for the reminders themselves to vary depending on their social
and situational context.
These results help to illustrate just how difficult of a situation these
participants are in when trying to adhere to pressure relief
guidelines. While forgetting is one reason for not performing a pressure relief,
It is not only the reason. There are contextual factors that impact
factors that impact
their pressure relief performance.
There is also incredible potential for personal informatics to
support these individuals in performing pressure reliefs,
with other self-care behaviors they must follow. Unfortunately, to date personal informatics has
almost completely ignored power wheelchair users.
Finally.
I'd like to thank you for your interest in this
work
This paper contains many more details and I would invite you
to please reach out to us if
you have any questions or would like to discuss this
topic further.
Thank you so much.