Confidentiality Form

Information from this interview will be used for assistance in writing a paper and open, round
table discussion during a class period. No names, locations, or hints of identification will be used
during the discussion portion.

I, _________________________________, (Date: 3/30/2021) acknowledge that I have been

informed about the scope and purpose of this interview. I consent to answering all questions
asked and that information being used for the purpose of the paper and round table presentation.
I acknowledge that I am also able to not answer any questions at any point with no questions
asked.
 Interview Questions
Can you tell me a little background about your accident? What happened and your initial
thoughts after it happened?

What do you remember thinking while you were in the hospital initially? What is your memory
of your doctors and how they handled giving information to you?

How did your family handle the situation acutely after the accident?

Before this event, what was your perception of healthcare providers? Did that perception change
at all after the event?

We have been learning about stages of grief, how people work through the stages differently, and
that process not always being a straight line. Do you mind sharing how you dealt with the grief
or your ability to cope with the accident after it had happened?

What is something throughout your rehabilitation that you thought healthcare providers did very
well?

What is something you thought they did very poorly or something that could have been done
better?

What are some things throughout your normal day that became more difficult after your
accident? Do you have ways of working through those challenges?

What do you think helped get you through the more challenging times of your recovery?

Part A:
 The individual I interviewed for this project was my aunt. She had an incomplete C5-C6
spinal cord injury during the summer of 2007. According to the Mayo Clinic, an incomplete
spinal cord injury means the person has some motor and sensory function below the level of
injury and there are varying degrees of incomplete.1 The injury was caused by a fall down her
basement steps in the middle of the night. She had to use the bathroom, and the basement door
was open which is directly next to her bathroom door. She was not fully awake and walked to the
open door. She stated that she stepped onto air and then was at the bottom of the steps. Her
oldest son’s room was in the basement, so she called for him to get his dad. At the bottom of the
stairs, she could not feel her arms or her legs, and she was taken by an ambulance to the hospital.
She stayed at Vanderbilt Hospital for three weeks and then was transported to the Shepherd
Center in Atlanta, Georgia. She would then partake in three more months of intensive
rehabilitation there before returning home.
Prior to the injury, my aunt was a runner since the time she was in high school, and she
said she had a beautiful singing voice. Since the accident, she can no longer run or sing because
of her injuries. Losing the ability to do these tasks was something initially that was very difficult
for her to cope with. She said that she still misses the ability to do those two specific tasks, but
has come to terms with her inability to do them.
Before her fall, my aunt stated that she had a pretty “normal” view of healthcare
providers and doctors. She thought they were there to help her, and she just needed to go for a
yearly physical or if something felt wrong. After the injury, her feeling towards healthcare
providers is very mixed. When she can find a helpful doctor that will listen to her wants and
needs and consider her as a whole person, she wants to stay with that doctor, but that is easier
said than done. While in acute care at Vanderbilt, she had many doctors that she felt didn’t know
the best things to do to try and help her which was frustrating as a patient. However, she did very
much appreciate one doctor taking time to talk with her about the Shepherd Center. He told her if
he or one of his family members were in her shoes that is where he would want to go. On the
other end of the spectrum, there were doctors at Vanderbilt that weren’t as helpful. My aunt
distinctly remembers being in a hallway the same night of the injury on a hospital bed after she
had imaging done, and no one would tell her what was wrong. Finally, one doctor said, “I’m
sorry, you’ve had a devastating accident,” and that was it. She said she will never forget those
words. To me, that relates back to my reading of Chasing my Cure. When David was diagnosed
with Castleman’s disease, the physician’s assistant told him that she had good news and that he
did not have lymphoma but instead Castleman’s disease. However, it wasn’t good news.
Castleman’s disease is a worse diagnosis at that time with no known cure. The ability to
communicate with patients during life changing episodes is critical, and I think in both instances
that was not done.
When thinking about building rapport with patients, treating them with respect and
dignity, and understanding them wholistically, healthcare practitioners can’t take things for
granted. During initial evaluations at the Shepherd Center, sensation testing had to be performed,
and during that my aunt felt like they were intruding in her personal space because as she put it:
“They had to check everywhere.” During that time, an extra couple of minutes of education
about what is being done and the why behind it could be very beneficial in respecting people’s
boundaries. Sometimes too, healthcare providers were too focused on the task they needed to do
instead of being personable. During her time at Shepherd, she would only get showers twice a
week and washed off with a washcloth once a day. Getting her to a shower meant using a lift to
get her onto a “metal slab” table and then wheeled into an industrial shower to get hosed off. She
said she always felt much better after, but the way it was done was in some ways dehumanizing.
A positive that my aunt discussed was her walking training at the Shepherd Center. She stated
the work was “grueling,” but she was thankful for it. One of the ways she was able to start
walking again was using a “robot-looking-thing.” This was good to hear because according to a
systematic review from Morawietz and Moffat, robotic assisted bodyweight supported gait
training is beneficial for patient after acute incomplete spinal cord injury.2
When talking with my aunt about her family and how they perceived her injury and how
they interacted with healthcare providers, she first stated how her boys were relatively young. At
the time of her fall, her youngest was 12 and the next son was 16. When she was in the hospital
and in Atlanta, her husband thought it was best for her children not to see her that way, so they
never visited her. She stated that was extremely difficult not seeing them. Even though she
couldn’t see her children, her husband was learning as much as he could to help her get home.
He even became certified to be able to help her put in a catheter and learned how to perform
stimulation for a bowel movement. My aunt said her immediate family was very helpful and a
driving force in helping her get home and also allow her to grieve. She thought her husband
found the healthcare providers helpful in getting him to learn ways to help her best when getting
home.
Currently, my aunt is able to walk and perform all ADLs independently, but needs
increased time to perform tasks. One issue she does have is with her balance though. As noted in
Brotherton et al., individuals with incomplete spinal cord injuries have increased numbers of
falls.3 That continues to be an issue for my aunt even today which is scary because that was her
initial mechanism of injury. Overall, there was a positive outlook for healthcare providers and
how they were able to push her and help her to get back to walking again. There were the few
that did not go as planned, but the majority of healthcare providers left a positive feeling with my
aunt.

Part B:
I believe my aunt is at the stage of acceptance. Her injury took place almost fourteen
years ago now. She has learned her limits on what she is able to do and learned different ways of
doing some tasks. Through talking with my aunt, I was able to understand how she has moved
through different stages of grief during her recovery. A stage I that did not seem to occur with
my aunt was denial. The first stage she experienced was anger. She remembers asking God why
this had to happen to her and being mad that He would do such a thing to her. Depression was
also a big stage during my aunt’s grieving process. She was placed on medication to help with
her depression at one point once she was home. There was a point where my aunt discussed not
wanting to be alive anymore while at the Shepherd Center and actually thought about different
ways she could die. Fortunately, she shared that with her sister and was able to get the help she
needed. Now, my aunt has been back home in Nashville for 14 years and living her best life. She
said she still has her bad days now and then, but the good days far outnumber the bad. According
the Kubler-Ross and Kessler, part of acceptance is not denying feelings and investing in other
relationships.4 I also think it is important that people don’t have to be okay with their situation to
accept it. The importance is the ability to understand their situation and what they can do to
improve their current situation. Currently, my aunt babysits her two grandchildren during the
week, and loves the ability to take care of them and be their grandma. She has determined her
“new normal,” and enjoys her time.

Part C:
I was young when my aunt had her injury and went through all of her rehabilitation, so I
don’t remember a lot of it. I was very surprised at everything she went through during her
rehabilitation and grieving process. I think overall the experience was what I thought it would be,
but I also feel like I learned a lot. I learned a lot not only about my aunt personally and her story
but also physical therapy, patient advocacy, and patient-centered care. I didn’t think interviewing
my aunt would be very difficult or uncomfortable, but I did feel like there were some instances
that were uncomfortable for me. She told me some things that she had only told a select few
people. I also was a bit taken aback when she said there were moments when she didn’t feel like
living anymore. I don’t think there is any good way to respond to someone telling me that. After
she told me that, I really had a feeling of sadness, but then also a feeling of great joy which was
odd. The sadness came more because she had gotten to such a low point. The joy was due to the
fact she was able to overcome those depths and come out the other side.
Something new I found out about myself is the appreciation I have for people in my life
and the appreciation I have for individuals who are willing to share their stories with me and
others. I always thought it was nice for people to share their stories, and I think I took a lot of
their stories at face value and not truly diving into more details about what had happened, what
they felt, or how they healed. Being able to talk with someone who is willing to be so open about
a time in their life that was so difficult is not something easy. I was able to learn so much about
her story, but also learn so much about what I can do to help others who are like her in the future.
From a professionalism perspective, we are taught to always treat the patient as a whole
and follow one of Ben’s rules of “be a human.” Sometimes those simple things can be forgotten
or not taken into account when working with a patient because as therapists, things are just trying
to get completed. I think this could be seen from an example my aunt gave. She said when she
was getting fitted for a wheelchair, she was transferred into a temporary chair and rolled into a
room that had a bunch of wheelchair equipment and was told that was how she was going to get
around. To my aunt, that was extremely disheartening. She wanted to be told that they would
work on eventually get her to talk again, which she ended up being able to do, but at that point in
time that wasn’t the outlook. The ability to communicate and how that communication is
performed has a major impact on patients. The actions and words of therapists cannot be
underestimated, and that is something professionally to keep in mind. I don’t think I had any
previous perceptions altered during my interview because school can teach “perfect” scenarios,
but in the “real world” oftentimes things don’t work quite like that. I think I was surprised at
some of the scenarios my aunt gave that wouldn’t have crossed my mind as to having an effect
on patients that actually do such as using a lift to transfer patients, going to get fitted for a
wheelchair, the word choices used by healthcare providers, and the type of assistance given when
trying to relearn tasks.
Through this experience and reflection, there are a few take away concepts that I learned,
and I think these concepts can really help as a future clinician. One major concept I took away
from my interview is the resiliency of people can never be underestimated. When people are
motivated, anything is possible for them to accomplish. There is a fine line though between
being realistic in what a patient can expect to accomplish and what is not medically possible.
Being clear with patient about that line would be important but can be a difficult conversation to
have. A second major takeaway is as physical therapists, we make a major impact on individuals
lives and that can be positive or negative. To make a positive impact, we have to think about the
patient wholistically and truly consider all biopsychosocial aspects of care. Simple things can
make a patient’s day just as little things that are trivial to healthcare providers can ruin a patient’s
day. A third major takeaway I had from this interview is the lengths that family will go to protect
each other and help one another. Family is important in a patient’s recovery and being able to
educate the family on how they can help the patient can be extremely beneficial. Family can help
in all aspects of a patient’s recovery and can serve as a motivating force. These three takeaways
were what I found most important, but I know I learned so much more through this experience
that I can take with me to be a great physical therapist.

Bibliography

1. Spinal cord injury. https://www.mayoclinic.org/diseases-conditions/spinal-cord-

injury/symptoms-causes/syc-20377890. Published September 17, 2019. Accessed April
1, 2021.
2. Morawietz C, Moffat F. Effects of Locomotor Training After Incomplete Spinal Cord
Injury: A Systematic Review. Archives of Physical Medicine and Rehabilitation.
2013;94(11):2297-2308. doi:10.1016/j.apmr.2013.06.023

3. Brotherton SS, Krause JS, Nietert PJ. Falls in individuals with incomplete spinal cord
injury. Spinal Cord. 2006;45(1):37-40. doi:10.1038/sj.sc.3101909

4. Article by: Christina Gregory. Five stages of grief - understanding the kubler-ross model.
https://www.psycom.net/depression.central.grief.html. Published March 4, 2021.
Accessed April 1, 2021.