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Living with Traumatic Brain Injury:
A Narrative Analysis of a Survivor’s Photographs and Interview
A Poster Presented to the American Public Health Association Annual Conference,
Boston, MA, November 6, 2006
Laura S. Lorenz, MA, MEd
Doctoral Candidate, The Heller School for Social Policy and Management
Brandeis University, Waltham, MA
Email: [email protected]
Abstract
Traumatic brain injury (TBI) is a silent epidemic that affects at least 1.4 million people in the
U.S. each year. An estimated 5.3 million Americans are living with disabilities resulting from
TBI, and another 80,000 to 90,000 people join their numbers annually. Research that provides a
deeper understanding of the patient’s perspective can provide clinicians and others with valuable
insights into the lives of TBI survivors and the facilitators and barriers to recovery from their
point of view. This past fall I carried out a pre-pilot study “Facilitators and Barriers to Recovery
from Traumatic Brain Injury: Through the Lens of Photovoice” with approval from the Brandeis
Human Subjects Research Committee and recruited one respondent. I asked her to take
photographs of living with TBI and facilitators and barriers to recovery from her perspective
using a disposable camera with 27 exposures. She finished her camera after three weeks, and we
met a week later to discuss her pictures. Some photographs were symbolic, others were
representational. She told me what each photograph meant for her, why she had taken it, and
how she had settled on or created the image. This poster presents a narrative analysis of 15 of her
photographs and their interview excerpts following an approach suggested by Elliot Mishler
(2004). Grouped into three categories (problem, action, and resolution), her photographs and
interview data tell of her joy in completing simple tasks, her gradual improvement over time, and
her sense of inner pride and hope for the future.
Background
Traumatic brain injury (TBI) is a serious problem affecting not only injured individuals but also
their families and communities. A TBI is an injury to the brain caused by an external physical
force, and may not be evident visually or clinically.1 Common sequelae include headaches and
memory loss; problems with initiation, attention, focus, and follow-through; and depression,
irritability, impulsiveness, and altered personalities. An estimated 5.3 million Americans are
currently living with disabilities resulting from TBI, and 80,000 to 90,000 individuals join their
numbers every year.2 Research that provides a deeper understanding of the patient’s perspective
can provide clinicians and others with valuable insights into the lives of TBI survivors and the
facilitators and barriers to recovery from their point of view.
This Study
I carried out this pre-pilot study in October 2006 with approval from the Brandeis Human
1 Jagoda, A. S., Cantrill, S. V., Wears, R. L., Valadka, A., Gallagher, E. J., Gottesfeld, S. H., et al. (2002). Clinical
policy: Neuroimaging and decisionmaking in adult mild traumatic brain injury in the acute setting. Annals of
Emergency Medicine, 40(2), 231-249. 2 Langlois, J. A., Rutland-Brown, W., & Thomas, K. E. (2005). The incidence of traumatic brain injury among
children in the United States - Differences by race. Journal of Head Trauma Rehabilitation, 20(3), 229-238;
Langlois et al., 2004.
L. S. Lorenz, 2006, Page 2
Subjects Research Committee and recruited one respondent. As specified in the protocol, she had
a cognitive level of at least seven on the Ranchos Los Amigos Cognitive Level Scale (one being
lowest and ten being highest), and she received her injury no more than five years ago. She took
photographs of living with her injury and facilitators and barriers to recovery from her
perspective using a disposable camera with 27 exposures. She finished her camera after three
weeks, and we met a week later to discuss her pictures. She told me what each photograph meant
for her, why she had taken it, and how she had settled on or created the image.
My two research questions were: What is the lived experience of people who have a traumatic
brain injury? What are the facilitators and barriers to recovery from the perspective of someone
who has a TBI?
The Analysis
This narrative analysis of 15 respondent photographs and interview excerpts follows an approach
inspired by Elliot Mishler (2004) to see “the basic story parts, in temporal order: an initial
problem, action to deal with it, and a resolution.”3 Grouped into the plot categories problem,
action, and resolution, the photographs and text excerpts show us “the prologue to a more
extended story” as the respondent moves on with her life, four years after her injury.4
For the analysis, I removed all duplicate photographs and photos that were “mistakes” (e.g., a
photograph of the ground). I did not include some photographs of family members, due to their
repetitive nature. We discussed her photographs in the sequence in which she took them. The
analysis transformed that sequence. Within each category, only the last photograph is placed
purposefully, as it appears to lead to the next category of photos.
Problem People with TBI may feel disconnected from themselves, their environment, and other people.
They may not be able to stay organized, make phone calls, and set and reach goals. They may
find it hard to sift out problems that were already a challenge from problems caused by their
injury. Being sick can be more of an obstacle to having the energy needed to “get out there.”
Memory loss can cause great risks—for example, leaving a cake in the oven till it burns to a
crisp. The last photograph and excerpt hint at an action or strategy that has helped: humor. We
need both the image and the excerpt to understand what the respondent means.
Table 1: Four Problem Photos with Text Excerpts
3 Mishler, E. (2004). Historians of the self: Restorying lives, revising identities. Research in Human Development, 1,
101-121, p. 108. 4 Ibid.
L. S. Lorenz, 2006, Page 3
…that’s how I felt…right after my accident, that there
was no connection and there were so many missing
links as I tried to begin living again…it was kind of
like living in the middle of nowhere…When I saw
that, well, that seemed like a perfect way to sum it all
up, you know
Paperwork…is a great obstacle for me…It’s also a
symbol for the disorganization I encounter in my
mind….there’s a sifting process here for me, because
paperwork was never a forte for me,...how much of it
is just my own pre-existing trait, and how much of it is
the disability? Maybe here it’s like 50-50.
…you said not to forget, that also obstacles, need to be
highlighted, because they are part of life with
TBI…and having this cold, actually it was the flu, was
more of an obstacle … than previous to my disability,
because when you don’t drive, and you rely
on…others, and you’re not feeling good, you just
don’t have the energy to get out there
…this is a burnt cake, and it symbolizes my
forgetfulness…now there is a joke in my house, where
if I ever were to open up a restaurant, it would be
called the well done café, because I tend to like to
make everything well done…but this is pushing it…so
that is my well done cake … and to have a sense of
humor about this whole thing is critical
L. S. Lorenz, 2006, Page 4
Action Here, the respondent shares some actions, strategies, and people she has found helpful. Having a
way to get away from the hustle and bustle of a houseful of teenagers served a good function.
Physical exercise has contributed to physical and mental health. A conscious decision not to
drive has meant her lack of focus will not endanger others on the road. Placing an object right in
the middle of the kitchen floor means it will be remembered.
Table 2: Four Action Photos with Text Excerpts
…in the early to mid stages of my recovery…it was
nice for Paul and I just to be able to get away,
and…we would have our own house away from home.
And with my brain injury, and already experiencing a
lot of confusion…with three college age kids…and
friends coming in and out, and, just, busy life… it
served a good function in that way.
My forgetfulness is such that…if I really wanted to
remember something, I would have to…place it right
in the middle of the floor, and otherwise, it would most
likely be forgotten. Lists, you know, lists just wouldn’t
work….I was trying to remember to take a picture that
day.
L. S. Lorenz, 2006, Page 5
This is…a neighbor who has become a good friend of
mine…in our walks every morning …we’ve been able
to confide in each other a lot…and she’s a great
listener…and…walking in the morning, has helped
me tremendously with my day…I feel very alert by
the end of the walk, and it’s just a great help, to have,
have someone to walk with like that.
I wanted to show that…by the decision not to drive, I
have .. slowed my life down, drastically … driving is a
responsibility, and it is taxing … if you were to take
your focus for.. a, second, away…you are not only
endangering, your own life, but the lives of other
people…so it is a very stressful activity, but we
all…take it for granted.
Action...Continued
People have played an important part in her recovery. A loved one’s patience and understanding
are vital for reducing stress and improving functioning. Emotional support from others helps her
feel safe and comfortable with her current abilities. Children and other family members remain
important to her—perhaps even more so. Therapy helped her initiate action to take better care of
herself—hinting at the third category, resolution.
Table 3: Four Action (continued) Photos with Text Excerpts
L. S. Lorenz, 2006, Page 6
…when I took his picture I said to myself, hmmm,
what would I really want Paul to be doing…he loves
to work with plants, and so, I …said…just do
something with this plant… because I wanted it to be a
metaphor of how he took care of me…He has a lot of
what it takes, mostly patience…very understanding.
…these two people are dear, dear friends of mine, and
also wonderful teachers, mentors for me…what they
represent for me…is how emotionally supportive they
have been, for me…I am able to show them…my
frailty…I’m able to ... feel very safe and comfortable
around them.
And here we have my daughter…she lives with
us…and she has been very supportive..and
understanding, right from the start, of the disability.
..She sees a lot of my compensatory strategies…and
she works with children with, special needs. We have
this now, and we help each other. So that’s a
wonderful thing…. I love having her. So, so, that’s
why she’s here!
I have a lifelong characteristic, of…caring for others.
And when it comes to myself I don’t do quite as
much….I think what matters is…to the degree that we
neglect ourselves. And I think there was a time in my
life when I did it, to the point of neglecting myself.
…I’ve always taken other people, seriously,…at work,
at home, everywhere. But now it may be time to truly
take my situation seriously.
L. S. Lorenz, 2006, Page 7
Resolution The survivor has a sense of accomplishment when she can get things done such as simple
household tasks. Her brain is working better, if not perfectly, three years after her injury. She
feels pride in her accomplishments and has hope for the future—perhaps the subject for another
study.
Table 4: Three Resolution Photos with Text Excerpts
…dishes that need to be done…the sense of getting this
cleaned up every day is, a wonderful feeling…it’s
concrete, it’s easy, it’s uncomplicated, and it’s just a
matter of getting it done…so this is a joy…I never look at
this, any longer as a chore…I really enjoy being able to
clean it all up, it probably just gives me such a sense of
accomplishment, and a job done.
…now this one here is again, another connection,
but it…has nice, big .. bulky connections, … (and)
it’s a whole picture… everything’s working,
connected, and it’s behind the scenes…and those
connections being made behind the scenes is what
makes everything go. So that’s why I took that. It’s
just, kind of simple, but yet it personifies a pretty
big thing. A pretty big thing.
I wanted to take her [Janét’s] picture …where she
would be happy and proud. The pride that you can
see…as she stands there, is the pride that I feel in
my accomplishments. And it’s very similar to the
pride of a young child as she’s growing…she
symbolizes for me the hope, for the future.
L. S. Lorenz, 2006, Page 8
Discussion Grouping the study photographs and their text excerpts into plot categories brings out movement
in the participant’s healing over time and reveals her hopes for the future—information that
would be more difficult to glean from analyzing a single photograph and its interview data,
frozen in time.
For this study, the respondent used several strategies for taking photographs. Some images she
took when she saw something in her house that reflected her experience with TBI; others she set
up on purpose to create the image. For some, she gave the camera to someone else; several
images she created with someone else’s participation. Often with this methodology, respondents
work with others to create their photographs:
• asking photographic subjects to pose in a way that reflects an aspect of their relationship
• giving them the camera to take the respondent’s picture
• seeking their participation in determining how to express an emotion, attitude, or
experience
A major question when considering narrative analysis is: What is narrative? For this study,
narrative is the series of photographs and interview text generated by the respondent. Narrative
analysis is often a case-centered approach, which is certainly true for this study. Rich et al (2002)
and others have referred to a series of respondent images (video) and text as a visual illness
narrative.5,6
For this TBI respondent, four years after her injury, her series of images
(photographs) and text could be called a visual healing narrative.
The Author
Laura S. Lorenz, MA, MEd, is a doctoral candidate in social policy at The Heller School for
Social Policy and Management, Brandeis University. Laura worked for 20 years in international
development as a photojournalist, writer, and editor, and has lived and worked in Africa, Latin
America, and India. She has led community action projects with youth in the U.S. and South
Africa and developed training curricula for after-school programs in the U.S. and Canada. To
gain an understanding of lived experience with traumatic brain injury, Laura is carrying out
photovoice studies through a rehabilitation hospital in Boston, MA and with a TBI survivor
support group in Framingham, MA. Laura facilitates photovoice training workshops and has
provided consulting services to photovoice projects in mental health, immigrant youth
leadership, and community health.
5 Rich, M., Patashnick, J., and Chalfen, R. (2002). Visual illness narratives of asthma: Explanatory models and
health-related behaviors. American Journal of Health Behavior, 26, 6, p 442-453. 6 Rich, M., Lamola, S., and Woods, E. R. (2006). Effects of creating visual illness narratives on quality of life with
asthma: A pilot intervention study. Journal of Adolescent Health, 38, 6, p 748-752.